Development and evaluation of A Self-Management
WeChat Public Account for skin toxic reactions of
immunotherapy patients with lung cancer
Subject/Department:
Future Health & Technology
University of Turku /Fudan University
Department of Nursing Science
Master's thesis
Author(s):
Jutao Hu
Supervisor(s):
Chief superintendent nurse
Xiaoju Zhang
Descale
4.18.2024
Turku
The originality of this thesis has been checked in accordance with the University of Turku quality
assurance system using the Turnitin Originality Check service.
Master's thesis
Subject:Future Health & Technology
Author(s): Jutao Hu
Title: Development and evaluation of A Self-Management WeChat Public Account for skin toxic
reactions of immunotherapy patients with lung cancer
Supervisor(s):Chief superintendent nurse/Xiaoju Zhang
Number of pages: 88 pages
Date:4.20.2024
Abstract
Background: The incidence and mortality of lung cancer are increasing year by year. Skin toxicity
has become a common immune-related adverse event in patients with lung cancer
immunotherapy. Mobile health devices have gradually developed, and electronic products are now
available on the mobile medical platform to help lung cancer patients self-manage immune-related
adverse events.
Objectives: The study is divided into four phases. Phase 1: Evidence summary of skin toxicity self-
management of lung cancer patients with immunotherapy and scale design and framework
construction of WeChat Public Account. Phase 2: Assess the utilization of electronic devices for anti-
tumor therapy in cancer patients. Phase 3: Develop the WeChat Public Account of skin toxicity in lung
cancer patients with immunotherapy.Phase 4: Evaluate the usability of the Public Account.
Methods:We used the literature research method in the first phase. In the second phase, the purposive
sampling method and group discussion were adopted. Then we used the brainstorming method in the
third phase. In the fourth phase of the study, we used the focus group approach to conduct internal
testing. A convenience sampling method was adopted to collect data.
Results: Through evidence extraction, the evidence was summarized from three aspects to form 32
best evidence. Based on this evidence, we constructed the framework and generated the preliminary
image-text health education knowledge. Next, we found that the patients have self-management needs
through the demand analysis and built the preliminary 3 modules and function design. Finally, we
modified 6 problems through the focus group, PSSUQ data indicated that the median of usability was
4.67, information quality was 4.425, and interface quality was 4.4, which shows that the users were
generally satisfied with the system as a whole. The results of the usability interviews also showed that
most interviewees had a good user experience with our platform. However, the function design still
needs improvement.
Conclusion: This study developed a WeChat Public Account which is called “FDUSCC-
Nursing” based on the evidence summaries, framework construction, and demand analysis. It has been
evaluated with good clinical usability and good user experiences, and it has excellent further clinical
application.
Keywords:Mobile health, Lung cancer, Immunotherapy, Symptom management.
Table of contents
1 Introduction .............................................................................................................7
1.1 The incidence and mortality of lung cancer are increasing year by year ................7
1.2 Standard treatment of lung cancer ...............................................................................7
1.3 Common immune-related adverse events ...................................................................7
1.4 Skin toxicity has become a common adverse reaction in lung cancer patients
with immunotherapy .............................................................................................................8
1.5 The management of skin toxicity ..................................................................................8
1.6 Mobile health devices could improve the self-management ability of lung cancer
patients .................................................................................................................................. 8
2 Literature review...................................................................................................10
2.1 Standard treatment of lung cancer .............................................................................10
2.1.1 Surgical treatment ................................................................................................................. 10
2.1.2 Radiotherapy and chemotherapy .......................................................................................... 10
2.1.3 Targeted therapy ................................................................................................................... 10
2.1.4 Immunotherapy ......................................................................................................................11
2.2 Common immune-related adverse events .................................................................12
2.3 Application status of mobile health care in lung cancer patients ..........................12
2.3.1 Application status of mobile medical care in lung cancer patients abroad ........................... 12
2.3.2 Application status of other electronic medical treatment in lung cancer patients abroad .....13
2.3.3 Application status of mobile medical care in lung cancer patients in China ......................... 14
2.4 Framework .....................................................................................................................15
2.5 Definition ....................................................................................................................... 17
2.6 Summary ........................................................................................................................18
3 Research Purposes .............................................................................................. 19
4 Technology Roadmap.......................................................................................... 20
5 Phase 1: Evidence summary of skin toxicity self-management of lung cancer
patients with immunotherapy and scale design and framework construction of
WeChat Public Account .......................................................................................... 21
5.1 Identify the need for self-management of skin toxicity in immunotherapy patients
with lung cancer (preliminary study) ............................................................................... 21
5.2 Evidence summary of skin toxicity self-management of lung cancer patients with
immunotherapy ...................................................................................................................21
5.2.1 Research methods ................................................................................................................ 21
5.2.2 Search strategy ..................................................................................................................... 21
5.2.3 Inclusion and exclusion criteria for references ......................................................................22
5.2.4 Literature Quality Evaluation ................................................................................................. 23
5.2.5 Evidence summary and polarization ..................................................................................... 23
5.2.6 Research process ..................................................................................................................24
5.3 Results of the literature review and evidence summary ......................................... 24
General features of the included literature: A total of 11 studies were included, comprising 4
guidelines, 3 evidence summaries, and 4 expert consensus documents. Figure 2 below illustrates
the flow of literature inclusion and exclusion, while Table 1 provides an overview of the included
studies. .......................................................................................................................................... 24
5.4 Scale design and framework construction of WeChat Public Account .................29
5.4.1 Design of the scale and logic of the WeChat public account ................................................29
5.4.2 Generate the preliminary image-text health education knowledge .......................................29
5.4.3 Generate the final image-text health education knowledge ..................................................29
5.5 Discusion .......................................................................................................................29
5.5.1 Abundant evidence sources, with good timeliness and practicability ................................... 29
5.5.2 Patient-reported outcomes are necessary for self-management of cancer patients ............ 30
5.5.3 Self-symptom management should be carried out when the patient is discharged ............. 30
5.6 Conclusion .................................................................................................................... 31
6 Phase 2: Assess the utilization of electronic devices for anti-tumor therapy in
cancer patients ........................................................................................................ 32
6.1 Qualitative interview.....................................................................................................32
6.1.1 Research methods ................................................................................................................ 32
6.1.2 Research setting and subjects .............................................................................................. 32
6.1.3 Interview outline .....................................................................................................................33
6.1.4 Data Collection ...................................................................................................................... 33
6.1.5 Data Analysis .........................................................................................................................33
6.1.6 Quality control ........................................................................................................................34
6.2 Results of qualitative interview...................................................................................34
6.2.1 The demographic characteristics of the participants in the interview ................................... 34
6.2.2 The topics were refined after the interview analysis ............................................................. 35
6.3 Discussion .....................................................................................................................37
6.3.1 The cognitive and self-management capacity of cancer patients in response to cancer
therapy is inadequate ..................................................................................................................... 37
6.3.2 The diversified functions of mobile health were conducive to improving patients' self-
management ability ........................................................................................................................ 37
6.3.3 The functionality and content of electronic products utilized in anti-tumor therapy should be
diverse and comprehensive. .......................................................................................................... 38
6.4 Conclusion .................................................................................................................... 38
7 Phase 3:The preliminary module content and function design of WeChat
Public Account ........................................................................................................ 39
7.1 Module content and function design ......................................................................... 39
7.2 The preliminary modules and functions design include: ........................................39
7.3 Workflow of WeChat public account ..........................................................................39
7.4 An example (Dry skin) of patient manual .................................................................. 40
8 Phase 4: Usability evaluation of the WeChat Public Account ..........................47
8.1 Research methods ........................................................................................................47
8.2 Focus group for internal test discussions ................................................................ 47
8.2.1 Focus Group Discussion ....................................................................................................... 47
8.2.2 The characteristics of the participants (Table7) .................................................................... 47
10.2.3 Discussion Process ............................................................................................................. 48
8.3 Results of the focus group discussion ......................................................................48
8.4 User satisfaction and user experience evaluation of “FDUSCC- Nursing”WeChat55
8.4.1 Research methods ................................................................................................................ 55
8.4.2 Evaluation indicators of user satisfaction ..............................................................................55
8.4.3 The outline of the usability interview ..................................................................................... 56
8.4.4 Research process ..................................................................................................................56
8.4.5 Statistical Methods ................................................................................................................ 56
8.4.6 Quality control ........................................................................................................................56
8.5 The results of the Post-Study System Usability Questionnaire (PSSUQ) ............. 57
8.5.1 The characteristic of the patients .......................................................................................... 57
8.5.2 User satisfaction of the patients with PSSUQ.......................................................................58
8.6 The results of usability interview............................................................................... 59
8.7 Disscusion .....................................................................................................................61
8.7.1 Evaluation about the usability of mHealth should comprehensive ........................................61
8.7.2 Problems that should be paid attention to when developing mobile health medical products
for lung cancer patients .................................................................................................................. 62
8.8 Conclusion .................................................................................................................... 62
9 Innovations and Limitations ................................................................................64
9.1 Innovations ....................................................................................................................64
9.2 Limitations .....................................................................................................................64
References ............................................................................................................... 65
Appendices .............................................................................................................. 72
Appendix 1 Preliminary self-report scale ........................................................................ 72
Appendix2 Further assessment scale ..............................................................................73
Appendix3-1 Basic knowledge of skin toxicity ...............................................................76
Appendix3-2 Skin protection.............................................................................................77
Appendix3-3 Life care of skin ............................................................................................78
Appendix3-3 Medication guide ......................................................................................... 79
Appendix4 The health education videos about skin protection ................................... 80
Appendix5-1 Basic knowledge of skin toxicity ...............................................................81
Appendix5-2 Skin protection.............................................................................................82
Appendix5-3 Life care of skin ............................................................................................83
Appendix5-4 Medication guide ......................................................................................... 84
Appendix 6 Informed consent for interview.................................................................... 85
Appendix 7 Post-Study System Usability Questionnaire（PSSUQ） ......................... 86
Appendix 8 Informed consent for usability evalution ....................................................87
Appendix 9 Ethics Committee Grant Letter .....................................................................88
71 Introduction
1.1 The incidence and mortality of lung cancer are increasing year by year
In 2020, there were 2.2 million newly diagnosed cases of lung cancer worldwide, accounting
for 11.4% of all new cancer cases and ranking second in incidence [1] .Lung cancer also
accounted for the most cancer-related deaths worldwide with 1.8 million deaths, representing
18.0% of all cancer deaths and ranking first in mortality [1]. Lung cancer was the most
common cancer in China in 2022 (1,060,600 cases). It is the leading cause of cancer-related
deaths in males and females [2]. Alarmingly, according to the World Health
Organizationsprojections, China is expected to have over 1 million new lung cancer cases
annually by 2025, making it the country with the highest incidence of lung cancer in the
world [3].
1.2 Standard treatment of lung cancer
Standard treatments for lung cancer include surgery, radiotherapy, chemotherapy, targeted
therapy, and immunotherapy. Since its clinical application and achievement of good
therapeutic effect in the 21st century, immunotherapy has been increasingly used in patients
with advanced tumors, particularly checkpoint inhibitors (ICIs), which are gradually being
established. The mechanism of ICIs is to activate the human immune system, enabling the
body to rely on its immune ability to kill tumor cells and thereby improve the survival rate of
patients. According to the related articles [4], the immunotherapy methods commonly used at
home and abroad include immune-monotherapy; immunotherapy combined with
chemotherapy; dual immuno-suppressive therapy; immuno-combined anti-vascular therapy,
and immunoadjuvant/adjuvant therapy.
1.3 Common immune-related adverse events
While immune checkpoint inhibitors activate the immune system in the body to play an anti-
tumor role, excessive activation may disrupt the balance of T cells, leading to T cells attack
against normal tissues or organs, which can cause local autoimmune inflammation and a
series of toxic events, referred to as immune-related adverse events (irAEs)[5]. The occurrence
of irAEs may be related to T cell activation against common antigens, increased levels of pre-
existing autoantigens, and increased levels of pro-inflammatory cytokines [5].
81.4 Skin toxicity has become a common adverse reaction in lung cancer
patients with immunotherapy
Non-small cell lung cancer (NSCLC) is the most common histological subtype of lung cancer,
accounting for approximately 80% of all cases [6]. Currently, the standard of care for NSCLC
patients involves comprehensive treatment primarily consisting of early surgical intervention,
complemented by radiotherapy, chemotherapy, and targeted therapy. However, during this
treatment process, patients may experience a range of adverse immune reactions [7]. In
relevant clinical trials, nearly 40% of NSCLC patients receiving immunotherapy were
diagnosed with skin-related adverse reactions [8,9,10], with 2% to 10% of patients experiencing
severe (> grade 3) skin adverse reactions [11,12]. Additionally, studies have demonstrated that
such skin symptoms significantly impact patients' comfort and quality of life [13].
1.5 The management of skin toxicity
The assessment of skin toxicity incorporates assessment by medical staff and self-reporting by
patients. Based on the PRO-CTCAE tool, domestic scholar Peng Nana [14] formed a PRO-
CTCAE subset of lung cancer immunotherapy, which can be used for symptom monitoring of
adverse reactions during immunotherapy in lung cancer patients. This subset contains 13
symptoms associated with skin toxic reactions and can indicate whether each symptom occurs
or how severe it is after the occurrence, improving the accuracy and convenience of
skin symptoms assessment through patient self-reporting. Skin toxic reactions often occur
when patients stay at home, and medical staff cannot obtain patients' situation dynamically
promptly. As a result, the assessment of these skin toxic reactions by medical staff may lead
to risks of low reliability and time sensitivity [15]. All in all, these patients had urgent demands
to manage their skin toxicity symptoms after discharge in the form of self-management.
1.6 Mobile health devices could improve the self-management ability of lung
cancer patients
Currently, the Internet has become an important source of health-related information for
cancer patients [16]. Web-based e-health care can mitigate the stigma associated with cancer,
enhance patients' treatment experience, and to some extent, increase patients’ enthusiasm to
participate in treatment [17]. Furthermore, it can address issues such as shortage of
professionals, delayed information dissemination, and high treatment costs associated with
traditional intervention modes [18]. While existing mobile health programs in China primarily
9focus on managing patients at the treatment stage, there is still insufficient support for the
self-management of patients after discharge [19]. In contrast, foreign studies place more
emphasis on the use of mobile health devices to support the continuous care of cancer patients,
including self-management support [20]. Nevertheless, the application of mobile health
technologies based on WeChat in caring for cancer patients is increasing [21]. These
technologies are used to provide authorization to patients mainly through information
provision, interactive feedback, self-monitoring, and other forms, allowing patients to better
understand their own health and improve their self-management capabilities, resulting in more
cost-effective and sustainable care [22].
In summary, with the increasing incidence and mortality of lung cancer in China, the skin
toxic reactions experienced by lung cancer patients during immunotherapy continue to
negatively impact patients' quality of life. Therefore, it is essential to develop a medical
service for patients with skin toxicity that empowers them to manage their own skin
symptoms and improve their quality of life. This study aims to use the WeChat Public
Account as a platform for patients to conduct self-management. Based on patients' needs for
self-management of skin symptom, we will develop a WeChat public account based skin
toxicity self-management module for lung cancer patients. In addition, we will conduct a
usability evaluation and further improve the self-management ability and quality of life of
lung cancer patients.
10
2 Literature review
2.1 Standard treatment of lung cancer
2.1.1Surgical treatment
In the early stages of small cell lung cancer treatment, surgery was once the preferred
treatment. Schreiber et al. [23] in the United States found that patients with limited-stage small
cell lung cancer (LD-SCLC) whose tumor stage was T1N0M0 had a significantly better
outcome after surgical treatment than radiotherapy and chemotherapy. Currently, the
mainstream medical view is that detailed TNM staging is necessary, especially for accurate
evaluation of lymph node metastasis. For patients with stage T1-2N0M0, surgical treatment is
recommended as the first-line treatment, followed by postoperative adjuvant therapy[23].
2.1.2Radiotherapy and chemotherapy
Chemotherapy and radiotherapy have always been critical therapeutic options for small cell
lung cancer that are used throughout all stages of treatment[24]. Simultaneous
chemoradiotherapy can also be used. According to a meta-analysis [24], the local recurrence
rate was reduced by 25% to 30% and the 2-year survival rate was increased by 5% to 7%
compared with chemotherapy alone.
2.1.3 Targeted therapy
Targeted therapy involves the use of drugs that can specifically bind to oncogenic gene loci to
induce specific death of cancer cells in the body[25]. It is generally applied to advanced lung
cancer patients. Compared with chemotherapy, targeted drugs have higher efficacy and fewer
side effects, thus enabling precise treatment of lung cancer [25], which has greater clinical
application value.
Targeted therapies have rapidly developed in the past few decades, starting with gefitinib, the
first drug targeting epidermal growth factor receptor (EGFR), and EGFR tyrosine kinase
inhibitor (TKI) drugs constantly being developed. Targeted therapies for other driver gene
mutations have also made breakthroughs. Currently, the driver gene mutation targets of
approved targeted therapies for lung cancer at home and abroad include EGFR mutation,
anaplastic lymphoma kinase(ALK) fusion, ROS proto-oncogene 1(ROS1) rearrangement,
BRAF-V600E mutation, neuro trophin receptor kinase (NTRK) fusion, Kristen rat sarcoma
11
viral oncogene(KRAS)-G12C mutation and human epidermal growth factor receptor-2 (HER2)
mutation, among others.[26].
2.1.4 Immunotherapy
Since its clinical application and achievement of good therapeutic effect in the 21st century,
immunotherapy has been increasingly used in patients with advanced tumors, particularly the
lung cancer immunotherapy system based on immune checkpoint inhibitors (ICIs), which is
gradually being established[4]. The mechanism of ICIs is to activate the human immune
system, enabling the body to rely on its own immune ability to kill tumor cells and thereby
improve the survival rate of patients[4].
According to the related article [26], the immunotherapy methods commonly used at home and
abroad include:
Immune monotherapy: The first indication of ICIs monotherapy is second-line treatment
or more, and clinical trials of ICIs monotherapy first-line treatment have been carried out
successively after the success of second-line and post-line treatment, and the beneficiaries
are mainly people with high expression of PD-L1.
Immunotherapy combined with chemotherapy: Currently, chemotherapy combined with
immunotherapy has become the standard first-line treatment for EGFR/ALK wild-type
advanced NSCLC. Due to the limited treatment population of immunomonotherapy,
combined therapy is an important strategy to expand the population suitable for
immunotherapy.
Dual immunosuppressive therapy: Relevant studies have shown [27] that the combined
application of some immunosuppressive agents can synergistically activate anti-tumor
immune responses and improve the efficacy of immunotherapy.
Immunocombined anti-vascular therapy: anti-angiogenic drugs acting on the tumor
microenvironment can transform the immunosuppressive microenvironment into a
supportive microenvironment. At the same time, the use of anti-angiogenic drugs can
reshape tumor blood vessels and enable immune effector cells to effectively infiltrate the
tumor [28].
12
Immunoneoadjuvant/adjuvant therapy: The study results of IMpower010[29] showed that
attillizumab adjuvant immunotherapy significantly improved the survival rate of patients
compared with the best supportive therapy.
2.2 Common immune-related adverse events
While immune checkpoint inhibitors activate the immune system in the body to play an anti-
tumor role, excessive activation may disrupt the balance of T cells, leading to T cells attack
against normal tissues or organs, which can cause local autoimmune inflammation and a
series of toxic events, referred to as immune-related adverse events (irAEs)[5]. The occurrence
of irAEs may be related to T cell activation against common antigens, increased levels of pre-
existing autoantigens, and increased levels of pro-inflammatory cytokines [30].
According to relevant studies, skin toxicity is the earliest and most common irAE. Women,
patients with a history of allergy, chemotherapy, and advanced tumors, are particularly prone
to immunotherapy-related skin toxic reactions [31]. These reactions are often clinically
manifested as a measles-like rash (accompanied by pruritus), telangiectasia, pruritus, and
vitiligo on the torso and limbs [32]. The median time of occurrence is about 1 month after
immunotherapy, and most skin toxicity can be relieved, while some require remission after
reducing or delaying immunotherapy. Additionally, irAEs can affect multiple systems in the
body. Some examples are immune-related pneumonia, nephrotoxicity, endocrine adverse
reactions, cardiac adverse reactions, and enteritis[30]. The types and characteristics of irAEs
are related to the types of immune checkpoint inhibitors and the patient's own state. The
severity of IRAES varies from an asymptomatic state to a life-threatening health situation[30] .
2.3 Application status of mobile health care in lung cancer patients
2.3.1Application status of mobile medical care in lung cancer patients abroad
In developed countries, mobile medical care, using mobile health technology, has become a
common way to provide remote nursing and health education to lung cancer patients. A
randomized controlled trial by Denis et al. [33] on 49 patients with lung cancer showed that
health education via smartphone applications extended the survival time of patients in the
intervention group. Patients shifted from relying on the hospital to relying on themselves and
their families for health management, from passive acceptance to active participation, which
helped to change bad habits and promote healthy behaviors. Tamara[34] et al. used mobile
13
health devices to train cancer pain patients in pain management skills by using health
education videos to provide some guidance to them and found that patients' self-efficacy was
significantly improved after the intervention. Patients were more likely to accept mobile
health technology for pain management guidance than traditional means.
Moreover, users can obtain medical information through smart mobile devices to receive
medical care services, and medical personnel can monitor the symptoms of patients through
reported symptoms, which can better manage symptoms for patients. Tang FWK[35] used
tablet computers for 10 newly diagnosed lung cancer patients to self-reported common
symptoms (dyspnea, fatigue, pain,anxiety). After reviewing the evaluation results, nurses
provided targeted educational interventions and concluded that tablet-assisted symptom
assessment could help assess patients' symptom burden in a busy clinical environment. This
method can identify individual needs for a customized symptom management plan. The study
by Maguire et al. [36] proposed the use of the symptom management system (ASyMS)
developed based on Internet technology to monitor the conditions of chemotherapy patients
after discharge when the time of hospitalization and outpatient treatment was shortened, and
the symptoms of patients could be managed in a timely and effective manner.
2.3.2Application status of other electronic medical treatment in lung cancer patients
abroad
3D health game: The US Lung Cancer Mobile Health Tool (m-Health TLC) is the first
interactive, immersive 3D iPad health game[37]. The m-Health TLC games are supported by
information in the form of stories of lung cancer patients, who provide health literacy and
self-management for the game's characters. Additionally, lung cancer patients can simulate
outpatient visits with clinicians in the game, providing opportunities for therapeutic
communication skills [37].
Internet-based Network Platforms and Websites: Christine L Paul et al. proposed an Internet-
based intervention program to provide valuable information, emotion,practical support to lung
cancer outpatients through real-time chat and email on the Internet, but it has not been
formally carried out yet [38]. For example, Fabrice Denis et al. conducted routine follow-ups of
lung cancer patients for 19 months based on their weekly symptom self-scores on the website.
They found that follow-up based on online self-reported symptoms improved the overall
survival rate of lung cancer patients and reduced their recurrence rate [39]. Dumang et al. [40]
specially developed "OncoKompas" for cancer patients, which stored the basic information of
14
all patients. Cancer patients and their families could communicate and share through this
platform. When patients raised questions on the platform, nurses could provide timely
feedback to help them cope with the problems caused by the disease.
Computer-based customized health enhancement support system: Carter et al. [41]are currently
developing a computer-tailored decision support tool to support shared decision-making in
lung cancer screening decisions; The web-based Comprehensive Health Enhancement
Support System (CHESS) improves caregivers' understanding and coping capacity, This
website not only provides various cancer-related knowledge, including lung cancer, scientific
and healthy lifestyle, and the latest progress in cancer research but also offers a cancer
knowledge learning section for patients to learn on their own.
2.3.3Application status of mobile medical care in lung cancer patients in China
In recent years, mobile medical technology has been widely used in the medical and health
field due to its convenient, fast,easy-to-promote characteristics. Medical professionals use
mobile phones, tablet computers, and other wireless devices to transmit health information to
patients and provide medical services. Currently, there are various forms of mobile medical
applications, including mobile phones, social media (such as QQ groups and WeChat), SMS
or email follow-up, mobile apps, remote monitoring systems and network platforms, and
patient management networks of hospitals, families, and communities [42]. However, as
mobile health care is still in the initial stage of exploration in China, most studies focused on
its application in the care of patients with other diseases, such as coronary heart disease [43],
diabetes [44], hypertension [45] and chronic obstructive pulmonary disease [46]. There are
relatively fewer studies on patients with lung cancer undergoing chemotherapy.
Application of continuous care in patients with lung cancer: In recent years, there have been
increasing studies on the use of WeChat groups, WeChat platforms, and network platforms
for continuous care in patients with lung cancer. He Li et al. [47] divided 120 patients with lung
cancer into a control group and an observation group. The control group received routine care,
while the observation group received health guidance follow-up, and question-answering
based on WeChat, combined with pictures, text, and videos to improve doctor-patient
interaction and transform patients from passive rehabilitation exercise to active exercise. The
results showed that the quality of life and self-efficacy scores of the observation group were
significantly higher than those of the control group. Wang Miao et al.[48] conducted
continuous nursing intervention based on telephone return visits and WeChat network
15
platform communication for patients with advanced lung cancer who planned to receive
chemotherapy. They found that this intervention could improve the overall quality of life and
psychological status of patients, significantly reduce the unplanned re-visit rate of patients,
and reduce the medical burden of patients.
Application in medical diagnosis and symptom management of lung cancer patients:Previous
studies[49] have shown that image diagnostic tools developed based on artificial intelligence
and deep learning technology are accurate in qualitative diagnosis and prediction of the
malignant probability of pulmonary nodules. Clinicians can identify benign and malignant
pulmonary nodules within about 1s through PC or smartphone access, with an accuracy rate
of more than 90%. The ASyMS lung cancer symptom management system developed by
KEARNEY et al. [50] records symptom changes, early detection, and reporting of
chemotherapy toxicity and side effects, which helps healthcare professionals to intervene and
manage in time, overcome geographical and time barriers, save clinicians' time, and reduce
errors caused by incomplete information and human fatigue. China's mLCCare lung cancer
management system is used to monitor and record patients' clinical progress, treatment history,
and biomarker data, which can be linked to biobank databases to link patients' disease data for
biological samples to enhance the application of medical research and clinical practice [51].
Domestic scholar Pang Yongli [52] reported that the extended nursing management mode of
lung cancer chemotherapy complications based on a mobile management system is highly
scientific and practical, which helps patients monitor the occurrence of chemotherapy
complications in a timely manner.
2.4 Framework
A holistic framework for the development of eHealth technologies: Holism posits that the
properties of individual elements in a complex system are determined by the relations they
bear to other elements [53,54]. A holistic perspective on eHealth technologies has been
advocated elsewhere, as seen in the works of Dansky et al [55], Yusof et al [56], and Kukafka et
al [57]. Without addressing the full range of factors, strategies to change behavior run the risk
of being ineffective because they fail to recognize interdependencies between individual and
organizational factors [57]. For us, this means that human characteristics, socioeconomic and
cultural environments, and technology are closely interconnected.
The full development of the modules in this study follows the CeHRes roadmap in the holistic
framework for e-health technology created by van Gemert-Pijnen et al. JE [58]. This roadmap
16
serves as a practical guideline to help plan, coordinate, and execute the participatory
development process of eHealth technologies. The framework is intended for developers
(such as technicians, designers, and health care professionals), researchers, policymakers, and
students and health care providers for educational purposes). It also serves as an analytical
instrument for decision-making about the use of eHealth technologies. The development
process of an eHealth technology and the accompanying research activities can be divided
into the following five parts (see Figure 1).
Contextual Inquiry: Information gathering from the intended users and the environment in
which the technology will be implemented is conducted through field observations and
interviews with intended users. This process provides insights into users' day-to-day
rituals and habits and how technology can be matched to them.
Value Specification: This process elaborates on the outcomes of the contextual inquiry.
Value specification involves the recognition and quantification of economic, medical,
social, or behavioral values of key stakeholders.The most favorable solutions, along with
user and organizational requirements, emerge from this process (such as user
requirements and value drivers).
Design: Prototypes are built that fit with the values and user requirements. The design
cycle involves the translation of functional requirements into technical requirements and
prototypes, given the specified values and goals of the eHealth project. The project
management team visualizes the translation into mock-ups keeping in mind the values,
goals, and tasks that need to be fulfilled.
Operationalization: This step concerns the actual introduction, adoption, and employment
of the technology in practice.
Summative Evaluation: Finally, summative evaluation refers to the actual uptake of a
technology (its usage) and the assessment of the impact of eHealth technologies in terms
of clinical, organizational, and behavioral terms.
17
Figure 1：CeHRes Roadmap for the development of eHealth technologies
2.5 Definition
WeChat Public Account: An individual or organization can apply for a WeChat public
account to promote all-around communication with a specific group, using various forms of
media such as text, pictures, voice and video [59].
Lung Cancer Patient: In this study, lung cancer patients are defined as those who received
relevant immunotherapy after being pathologically diagnosed with lung cancer [60].
Immunotherapy: Immunotherapy refers to the application of immunological principles and
methods to overcome the state of immune tolerance or neglect of tumors by the body's
immune system through passive or active means, and to enhance the body's anti-tumor
immune response, with the aim of inhibiting tumor growth and eliminating tumor cells [61].
Commom immunotherapy drugs include cytotoxic T lymphocyte associated antigen-4,
programmed death receptor-1/programmed death ligand-1(PD-1/PD-L1), Lymphocyte-activ-
ationgene-3(LAG-3), among others [62].
Self-management (SM): Self-management refers to a chronic disease management approach
in which medical staff educate patients on the knowledge and skills necessary for disease
management, give full play to their subjective initiative in disease management, empower
them to take an active role in managing their condition, foster positive self-management
attitudes and behaviors, and encourage patients to proactively achieve health goals and
improve their quality of life [63]. In this study, the self-management group consists of lung
cancer patients undergoing immunotherapy, who actively manage their skin toxicity
symptoms through health information and nursing advice provided by medical staff.
18
Dermal toxic reaction (DTR):Drug-related skin toxicity is a common adverse effect [64]. Its
clinical manifestations typically include a measles-like rash (accompanied by pruritus) on the
trunk and limbs, dry skin, telangiectasia, pruritus and vitiligo, among other symptoms.
Mobile Health (MH): Telemedicine, also known as telehealth, refers to the use of mobile and
wireless technologies (such as mobile phones, tablets, and satellite communications) to
provide healthcare and information services from a distance. It represents a novel, patient-
centered nursing model that is data-driven [65].
2.6 Summary
Immunotherapy is commonly used for lung cancer patients, and a series of immune-related
adverse reactions caused by it require close attention by medical staff, especially immune-
related skin adverse reactions, which are the earliest and most common immune-related
adverse reactions[5,8] . Therefore, it is necessary for nursing staff to provide relevant nursing
guidance. Furthermore, compared to the domestic development of mobile medical and
electronic medical technology in foreign countries, the application of such technologies in
lung cancer patients is more extensive and diverse. The information provided by relevant
medical equipment is also more comprehensive and targeted. Currently, the application of
mobile medical equipment in lung cancer patients in China mainly focuses on medical
diagnosis and symptom management. However, there is a lack of substantive mobile medical
equipment for follow-up care and self-management of lung cancer patients.
19
3 Research Purposes
Establish the framework and contents of self-management of skin toxic reactions in lung
cancer patients with immunotherapy;
Assess the utilization of electronic devices for anti-tumor therapy in cancer patients;
Develop a WeChat Public Account of skin toxicity for lung cancer patients receiving
immunotherapy;
Evaluate the usability of the WeChat Public Account.
20
4 Technology Roadmap
21
5 Phase 1: Evidence summary of skin toxicity self-management
of lung cancer patients with immunotherapy and scale design
and framework construction of WeChat Public Account
5.1 Identify the need for self-management of skin toxicity in immunotherapy
patients with lung cancer (preliminary study)
A prior, qualitative study conducted interviews on the needs related to self-management of
skin toxicity in lung cancer patients undergoing immunotherapy. Findings demonstrated that
patients with lung cancer receiving immunotherapy had knowledge and information needs,
symptomatic treatment needs, continuous service needs, and psychological counseling needs
for self-management of skin toxicity symptoms. Certain challenges were also identified,
including inadequate symptom recognition, insufficient self-management knowledge,
ineffective self-response, and poor communication between healthcare providers and patients.
These research results would provide the foundation for the development of the self-
management module in the present study.
5.2 Evidence summary of skin toxicity self-management of lung cancer
patients with immunotherapy
5.2.1Research methods
Through a literature review approach, both domestic and international foreign guidelines,
books, scientific literature, nursing practices pertaining to skin toxicity in immunotherapy
were examined to establish the framework and content of the self-management knowledge
required for the later development of the public account. The health education knowledge was
then transformed into a visual image-text format based on professional discussions within the
research team.
5.2.2Search strategy
Database and networks were searched including CNKI, Pub Med, Cochrane Library,
CINAHL, Web of Science, EMBASE, National Comprehensive Cancer Network Network
(NCCN) , Joanna Briggs Institute (JBI). The search period would be extended up to July 2023.
Search terms used a combination of keywords and free words, including in English:
"immunotherapy/chemotherapy/drug therapy/Molecular Targeted Therapy/immunological
22
therapy/Targeted Therapy/Drug Related Side Effects and Adverse Reactions/Drug Side
Effect/skin toxicity/dermal toxicity/acute dermal toxicity/adverse skin reaction/skin
lesions/self-management/Disease Management/Nursing, Practical/Practical Nursin /nursing
intervention/nursing management/self-care."The Chinese search terms are“免疫治疗/化疗/
靶向治疗”“皮肤毒性/皮肤不良反应/皮肤毒性反应/皮肤损害/免疫相关不良事件”“护
理措施/应对策略/护理常规/自我管理/管理/自我护理”。
Search queries were conducted using CNKI and Pub Med as an example:
CNKI：(SU=‘免疫治疗’+‘化疗’+‘靶向治疗’）AND (SU= ‘皮肤毒性’+ ‘皮肤不良反应’
+ ‘皮肤毒性反应’+‘皮肤损害’+ ‘免疫相关不良事件’) AND (SU= ‘护理措施’+ ‘应对策
略’+ ‘护理常规’+ ‘自我管理’+ ‘管理’ + ‘自我护理’)。
Pub Med:(“immunotherap*y”[Mesh] OR “chemotherap*y”[Mesh] OR “drug
therap*y”[Mesh] OR “Molecular Targeted Therap*y”[Mesh] OR “immunological
therap*y”[Ti/Ab] OR “Targeted Therap*y”[Ti/Ab]) AND (“Drug-Related Side Effects
and Adverse Reactions” [Mesh] OR “Drug Side Effect*” [Ti/Ab] OR “ skin
toxicit*y”[Ti/Ab] OR “dermal toxicit*y”[Ti/Ab]OR“acute dermal toxicit*y”[Ti/Ab] OR
“adverse skin reaction*”[Ti/Ab] OR “skin lesions”[Ti/Ab]) AND (“self-
management”[Mesh]OR “Disease Management”[Mesh]OR“Nursing, Practical”[Mesh] OR
“Practical Nursing”[Ti/Ab] OR “nursing intervention*”[Ti/Ab] OR “nursing
management”[Ti/Ab] OR “self-care”[Ti/Ab]).
5.2.3 Inclusion and exclusion criteria for references
Inclusion criteria are as follows:
 The study subjects must be cancer patients who have received or are receiving cancer-
related treatment;
 The research must involve nursing management of skin toxicity;
 The literature types include clinical decision-making, guidelines, evidence summary,
recommendations, best practices, expert consensus, systematic review and meta-
analysis, and they should be published between January 1, 2015, to July 31, 2023,
because the literature during this time may have timeliness and innovation.
23
 The literature must be written in Chinese or English.
Exclusion criteria are as follows:
 Incomplete information, inability to obtain the full text, and repeated publication of
the study;
 Studies that do not pass the literature quality evaluation;
 Translated and interpreted versions of foreign guidelines, brief versions of guidelines,
and non-latest versions(literature that was published earlier than 2015), which refers to
the literature during the last ten years for the reason that this evidence could be more
significant.
5.2.4 Literature Quality Evaluation
The guidelines were evaluated using the Appraisal of Guidelines for Research and Evaluation
Ⅱ, AGREEⅡ [66], which includes 6 fields and 23 items, each scored on a scale of 1 to 7 points.
Based on the standardized scores in each domain, the guidelines were divided into 3 levels of
recommendation. Expert consensus and recommended practice were assessed using
evaluation tools recommended by JBI Evidence-Based Health Care Center [67]. Critical
appraisal for summaries of evidence (CASE) [68]was used to evaluate the quality of the
included evidence summaries and clinical decisions. Clinical decision-making traced the
source of evidence and evaluates the quality based on the type of original literature. The
quality evaluation was independently performed by two researchers trained in evidence-based
medicine according to the aforementioned criteria. In cases of differences in the evaluation
opinions, a third researcher would be consulted for discussion and joint decision-making.
5.2.5 Evidence summary and polarization
Incorporate evidence-based complementary recommendations while preserving the original
expression of independent evidence; when the evidence is the same, use concise and clear
recommendations; when there are differences in the content of the evidence, prioritize high-
quality, latest, or authoritative evidence. The level of evidence was pre-graded according to
the JBI Evidence-based Health Care Center’s Evidence Pre-Grading System (2014 edition),
which is graded on a scale of 1 to 5 [69].
24
5.2.6Research process
During this study phase, a senior dermatologist, an evidence-based senior researcher in related
fields, and 4 medical staff from related departments of lung cancer immunotherapy were
invited to review and provide feedback on the initial health education knowledge.
Subsequently, the final image-text health education knowledge was established following
revisions by the researcher, dermatologist, and researcher in turn after group discussion.
5.3 Results of the literature review and evidence summary
General features of the included literature: A total of 11 studies were included, comprising 4
guidelines, 3 evidence summaries, and 4 expert consensus documents. Figure 2 below
illustrates the flow of literature inclusion and exclusion, while Table 1 provides an overview
of the included studies.
Quality evaluation results of guidelines: Four guidelines [70,71,72,73] were included in this study.
Among them, the overall quality evaluation results of 2 guidelines were grade A and the other
2 guidelines were grade B. The percentage of standardization in each field of the included
guidelines and the results of two comprehensive evaluations are shown in Table 2.
Quality evaluation results of expert consensuses: Four expert consensuses [74,75,76,77] were
included in this study. The evaluation results of all items were "Yes" and the research design
was comprehensive, so the overall quality was high. Table 3 below illustrates the details.
Quality evaluation results of evidence summaries: Three evidence summaries [78,79,80] were
included in this study. The evaluation results of all items were "Yes" and the overall quality
was good, so they were all included (Table 4) .7.3.2 Evidence summary and polarization:
The level of evidence was pre-graded according to the JBI Evidence-based Health Care
Center’s Evidence Pre-Grading System (2014 edition), which is graded on a scale of 1 to 5 [69].
Through evidence extraction and integration, finally, the evidence was summarized from three
aspects (Self-assessment and proactive reporting, Daily protective measures, and common
treatments) to form 32 best evidence. Table 5 below lists the 32 pieces of evidence in detail.
25
Figure 2The inclusion and exclusion flow of literature
Table 1 The basic information of the included literature
Literature Year Source Type Title
中国抗癌协会肿瘤护理专业委[70] 2019 CNKI Guideline 中国癌症症状管理实践指南——皮肤反应
American Society of Clinical
Oncology[71]
2021 ASCO Guideline Management of Immune-Related Adverse Events in
Patients Treated With Immune Checkpoint Inhibitor
Therapy: ASCO Guideline Update
John A. Thompson[72] 2023 NCCN Guideline Management of Immunotherapy-RelatedToxicities
CSCO[73] 2023 CSCO Guideline 免疫检查点抑制剂相关的毒性管理指南
王刚等[74] 2021 CNKI Expert
consensus
抗 EGFR单抗治疗相关皮肤不良反应临床处理专家共识
中国抗癌协会[75] 2019 CNKI Expert
consensus
EGFR-TKI不良反应管理专家共识
Califano[76] 2015 PUBME
ND
Expert
consensus
Expert Consensus on the Management of Adverse
Events from EGFR Tyrosine Kinase Inhibitors in the UK
Gravalos[77] 2019 PUBME
ND
Expert
consensus
Clinical management of cutaneous adverse events in
patients on targeted anticancer therapies and
immunotherapies: a national consensus statement by
the Spanish Academy of Dermatology and Venereology
and the Spanish Society of Medical Oncology
Jolyn[78] 2022 JBI Evidence EGFRI: Management of Skin Toxicity
26
Literature Year Source Type Title
summary
Sophie[79] 2021 JBI Evidence
summary
Targeted Therapy: Epidermal Growth Factor Receptor
Inhibitor Associated Skin Rash Prevention and
Treatment
Tania[80] 2021 JBI Evidence
summary
Epidermal Growth Factor Receptor Inhibitor (EGFRI):
Management of Cutaneous Adverse reactions
Table 2 Quality evaluation results of 4 guidelines
Literature
included
Percentage of standardization by field (%) Score Level
Scope
and
purpose
Stakeholder
involvement
Rigour of
development
Clarity of
presentatio
n
Applicabilit
y
Editorial
independence
中国抗癌[70] 80.57% 88.89% 77.08% 69.44% 35.41% 70.83% 5 B
American
Society of
Clinical
Oncology[71]
75.56% 71.67% 83.29% 86.11% 62.5% 45.83% 5 B
John A.
Thompson[72]
95.67% 78.8% 90.48% 98.9% 79% 78.42% 7 A
中国临床肿
瘤学会指南
工作委员[73]
96.88% 70.57% 62.34% 67.89% 80.26% 70.34% 6 A
Table 3 Quality evaluation results of 4 expert consensus
Annotation:C1: Is the source of opinion clearly identified?C2: Does the source of opinion have
standing in the field of expertise? C3: Are the interests of patients/clients the central focus of the
opinion? C4:Is the opinion's basis in logic/experience clearly argued? C5:Is the argument that has
been developed analytical? Is the opinion the result of an analytical process drawing on experience or
the literature? C6:Is there reference to the extant literature/evidence and any incongruence with it
logically defended?
Literature included C1 C2 C3 C4 C5 C6
王刚等[74] yes yes yes yes yes no
中国抗癌协会[75] yes yes yes yes yes no
Califano[76] yes yes yes yes yes no
Gravalos[77] yes yes yes yes yes no
Table 4 Quality evaluation results of 3 evidence summaries
Annotation: C1:Specific in scope and application; C2:Authorship is transparent; C3:Reviewers/ editors
is transparent; C4:Search methods are transparent and comprehensive; C5:Evidence grading system
is transparent and ttranslatable; C6:Recommendations are clear; C7:Recommedations are
appropriately cited; C8: Recommendations are current; C9:Unbiased; C10:Can apply it to my patients.
Literature included C1 C2 C3 C4 C5 C6 C7 C8 C9 C10
Jolyn[78] yes yes yes yes yes yes yes yes yes yes
Sophie[79] yes yes yes yes yes yes yes yes yes yes
Tania[80] yes yes yes yes yes yes yes yes yes yes
Table 5 Evidence Summary
27
Category of evidence Content of evidence Level of
evidence
Self-assessment and
proactive reporting
1.Instruct patients to report suspicious symptoms to the treatment team (medical
staff) in a timely manner when toxicity occurs [73].
2
2.The severity of adverse skin events should be assessed as early as possible and
refine whether specialist advice or referral is needed [72,78].
3
3.Patients should be encouraged to report any changes in their health status to
their medical staff [71].
4
4.Patients should report the appearance or worsening of new symptoms
immediately, and they also should avoid self-management without coordination with
the oncology treatment team[72,79].
3
5.The PRO-CTCAE self-report scale is recommended for self-assessment[71,72]. 4
6.Dry skin: Grade1:Covering <10% BSA and no associated erythema or pruritus.
Grade2:Covering 10 - 30% BSA and associated with erythema or pruritus; limiting
instrumental ADL. Grade3:Covering >30% BSA and associated with pruritus;
limiting self care ADL[77].
1
7.Bullous dermatitis: Grade1:Asymptomatic; blisters covering <10%
BSA .Grade2:Blisters covering 10 - 30% BSA; painful blisters; limiting instrumental
ADL.Grade3:Blisters covering >30% BSA; limiting self care ADL. Grade4:Blisters
covering >30% BSA; associated with fluid or electrolyte abnormalities; ICU care or
burn unit indicated[71,72,73].
1
8.Palmar-plantar erythrodysesthesia syndrome: Grade1:Minimal skin changes or
dermatitis (e.g., erythema, edema, or hyperkeratosis) without pain. Grade2:Skin
changes (e.g., peeling, blisters, bleeding, fissures, edema, or hyperkeratosis) with
pain; limiting instrumental ADL. Grade3:Severe skin changes (e.g., peeling, blisters,
bleeding, fissures, edema, or hyperkeratosis) with pain; limiting self care ADL[77].
1
9.Photosensitivity: Grade1:Painless erythema and erythema covering <10% BSA.
Grade2:Tender erythema covering 10 - 30% BSA. Grade3:Erythema
covering >30% BSA and erythema with blistering; photosensitivity; oral
corticosteroid therapy indicated; pain control indicated (e.g., narcotics or
NSAIDs)[77].
1
10.Pruritus: Grade1: Mild or localized; topical intervention indicated. Grade2:
Widespread and intermittent; skin changes from scratching (e.g., edema,
papulation, excoriations, lichenification, oozing/crusts); oral intervention indicated;
limiting instrumental ADL. Grade3:Widespread and constant; limiting self care ADL
or sleep; systemic corticosteroid or immunosuppressive therapy indicated[71,72,73,77].
1
11.Rash maculo-papular: Grade1:Macules/papules covering <10% BSA with or
without symptoms (e.g., pruritus, burning, tightness) Grade2: Macules/ papules
covering 10-30% BSA with or without symptoms (e.g., pruritus, burning,tightness);
limiting instrumental ADL;Grade3:Macules/papules covering >30% BSA with
moderate or severe symptoms; limiting self care ADL[72,73,74,77].
1
12.Skin hyperpigmentation Grade1: Hyperpigmentation covering <10% BSA; no
psychosocial Impact. Grade2:Hyperpigmentation covering >10% BSA; associated
psychosocial impact[77].
1
Daily protective
measures
13.Avoid direct sunlight without protection (e.g. using sunscreen)[70,74,75,78,80]. 1
14.Avoid products that can cause skin dryness (e.g. alcohol-based cosmetics, hot
water)[70,75,78,80].
1
15.Avoid beard growth and use correct shaving methods (e.g. trim facial hair before
shaving, avoid electric shavers) and protective or moisturizing products that are
less likely to damage or dry the skin[76,78,80].
2
16.Avoid hair removal wax and plucking[76,78,80]. 1
28
Category of evidence Content of evidence Level of
evidence
17.Regularly moisturizing with gentle chemical-free and oil-based
products[70,74,75,78,80].
1
18.Limit cosmetic use and use gentle products for make-up removal[78,80]. 3
19.Keep finger and toe nails trimmed[76,70,78,80]. 2
20.Vitamin K1cream has shown some benefit and is well-tolerated[70,80]. 1
21.For patients with depigmented skin in light-exposed areas, light protective
measures are recommended to avoid sunburn[70,80].
2
22.Patients should be informed of the necessity of sun protection before treatment,
and the following sun protection measures should be taken every day: (1) Pay
attention to physical cover when going out, such as sunshade, sun hat and
sunglasses. (2) It is recommended to apply broad-spectrum sunscreen 30 minutes
before going out after moisturizing cream[70,75,80].
3
23.Timely moisturizing skin care after cleaning: (1) Choose light emulsion for the
areas that secrete more oil, such as face, neck and back, twice a day; (2) Where
the skin is prone to dry, such as the extremities and hands and feet, choose a thick
cream or cream twice a day; (3) It is recommended to choose medical skin care
products that do not contain ethanol, contain ceramides or other physiological
lipids, and have the effect of skin barrier repair[70,75,80].
3
Common treatments 24.For grade 1-2skin toxicity: topical corticosteroids, emollients and oral
antihistamines can be used when ICI treatment continues, and corticosteroids can
be used twice a day until the condition improves[76,79].
2
25.For≥grade 3 or intolerable grade 2 skin toxicity: Patients with more severe skin
toxicity who do not respond to external drug treatment should be given systemic
corticosteroid therapy, and ICI treatment may need to be interrupted or even
stopped[76,79].
2
26.The targeted treatment of pruritus includes oral antihistamines and topical
medications[74].
3
27.In those who have developed grade 1 to 3 acneform rash, topical corticosteroids
and oral antibiotics in addition to usual skin care is suggested, as compared to
usual skin care alone[74].
4
28.Pruritus: Topical (medium-to high-potency steroids) or systemic (antihistamines
or gabapentin/pregabalin or doxepin)[71,72,73,77].
4
29.Xerosis: Topical for mild/moderate xerosis (emollient creams packaged in jar/tub
that lack potential irritants,occlusive emollients containing urea, colloidal oatmeal
and petroleum-based creams) topical for severe xerosis (medium to high-potency
steroid creams[78,77].
4
30.Radiation dermatitis: Topical (maintain hygiene and gently clean and dry skin in
the radiation feld) or systemic (antibiotics (doxycycline))[72].
4
31.Rash: Topical (alclometasone 0.05% cream, fuocinonide 0.05% cream twice
daily, or clindamycin 1%) or systemic (doxycycline 100 mg twice daily, minocycline
100mg daily, or isotretinoin at low doses of 20 to 30 mg/day)[73,74,77].
4
32.For paronychia: Preventative measures to avoid pressure and friction (loose
footwear and correct nail trimming) is recommended[74,78].
4
29
5.4 Scale design and framework construction of WeChat Public Account
5.4.1Design of the scale and logic of the WeChat public account
The development of this initial self-report scale is rooted in the framework of the lung cancer
immunotherapy PRO-CTCAE subset (Appendix 1). It facilitates patients to initiate the self-
report process, and if the report indicates the presence of skin toxicity, they will be directed to
complete the subsequent standardized questionnaire.
Subsequently, participants would be asked to complete a standardized questionnaire, which is
based on the NCI-CTCAE 5.0 grading standard for skin adverse reactions. This questionnaire
would provide a more comprehensive assessment of the severity of skin toxicity. To develop
the questionnaire, we identified 9 common symptoms (including dry skin, pruritus, palmar-
plantar erythrodysesthesia syndrome, reactive cutaneous capillary endothelial proliferation,
rash macular-papular, photosensitivity, skin hypopigmentation, vitiligo, bullous dermatitis) of
skin toxicity associated with immunotherapy through a thorough review of the existing
literature (Appendix 2).
5.4.2Generate the preliminary image-text health education knowledge
Based on the "daily protective measures" and "common treatments" parts of the evidence
summary, we generated the preliminary image-text health education knowledge. It contained
7 essays and they can be divided into 4 major themes, they were "basic knowledge of skin
toxicity of Immunotherapy", "skin protection", "life care of skin", and "medication
guide"(Appendix 3). What’s more, our team filmed and edited three of its own small health
education videos about skin protection in this process (Appendix 4).
5.4.3Generate the final image-text health education knowledge
We refined the preliminary image-text health education knowledge into the final image-text
health education knowledge through collaborative discussions with 4 engineers (Appendix 5).
5.5 Discusion
5.5.1Abundant evidence sources, with good timeliness and practicability
The evidence summarised derived from 4 guidelines, 4 expert consensus papers and 3
evidence summaries. The overall quality of the literature was high, and all of them were
30
published or updated in 2019 or later, with strong timeliness. The evidence items included all
involved self-management of skin toxic reactions in immunotherapy, which was consistent
with the subject of evidence, and the evidence was supported by both foreign and domestic
literature, which had certain reference values for the practice of self-management of skin toxic
reactions in immunotherapy.
5.5.2Patient-reported outcomes are necessary for self-management of cancer
patients
Patient-reported outcomes (PROs) are essential for the self-management of cancer patients.
PROs, which concentrate on patient self-reported health-related outcomes and emphasize
capturing a patient's genuine experiences, can offer more reliable information about the
patient compared to conventional clinical indicators [81]. The included guidelines [71,73] propose
that by utilizing self-reported outcome information from cancer patients, healthcare
professionals can gain a more comprehensive understanding of the issues and requirements of
patients during the treatment or self-management process. It is important to acknowledge that
during the self-management of patients experiencing skin toxicity, the reported outcomes may
vary due to differences in individual symptoms. Therefore, healthcare professionals should
advise patients to conduct a rational analysis of the reported outcomes and implement tailored
self-symptom management measures based on the specific symptoms observed.
5.5.3Self-symptom management should be carried out when the patient is
discharged
Post-discharge self-symptom management should be implemented as part of the patient's care
plan. Irrespective of the underlying condition, patients should engage in self-symptom
management activities following discharge. Findings from a foreign randomized controlled
trial demonstrated that post-discharge self-management interventions are safe and effective,
leading to a significant reduction in patient readmissions within a 30-day timeframe [82].
Therefore, for cancer patients experiencing skin toxicity, healthcare professionals can
encourage regular self-assessment and self-management activities post-discharge, aiming to
maintain symptom stability and enhance their quality of life.
31
5.6 Conclusion
The evidence summaries systematically synthesized the most robust evidence regarding the
self-management of cancer patients experiencing skin toxicity, encompassing three key
aspects: "Self-assessment and proactive reporting", "daily protective measures" and "common
treatments"."Self-assessment and proactive reporting" plays a crucial role in the self-
management process, enabling patients to gauge the presence and severity of skin
toxicity."Daily protective measures" empowers patients with appropriate medical knowledge
to effectively safeguard their skin health. "Common treatments" entails the utilization of
numerous medical guidelines. Hence, healthcare professionals should provide guidance to
patients in implementing specific self-symptom management interventions tailored to their
individual symptoms, as identified through patient-reported outcomes (PROs).
32
6 Phase 2: Assess the utilization of electronic devices for anti-
tumor therapy in cancer patients
6.1 Qualitative interview
6.1.1Research methods
By conducting qualitative interviews with patients currently using or who have used
electronic products related to anti-tumor therapy, we could gain a deep understanding of the
demand and usage situation of existing electronic products for anti-tumor therapy in cancer
patients. This information provided a basis for the design of the skin toxic reaction module
and product design that will follow.
6.1.2Research setting and subjects
The purposive sampling method was used to select tumor patients from the Fudan University
Shanghai Cancer Center(FDUSCC)for semi-structured one-on-one in-depth interview.
Inclusion criteria:
 Pathological diagnosis of tumor;
 Age ≥18 years old and having received relevant anti-tumor therapy;
 Experiencing treatment-related adverse reactions, and using or having used electronic
products related to anti-tumor therapy;
 Being willing to participate in the interview and physically able to do it during the
interview.
Exclusion criteria:
 Patients who are having a combination of other serious life-threatening diseases;
 Having cognitive impairment or mental illness.
The sample size is determined based on data saturation, which was reached when no new and
important topics emerged.
33
6.1.3 Interview outline
Have you received anti-tumor therapy, and if so, are you aware of any related adverse
reactions or preventive measures that may occur as a result of the therapy? If yes, through
what channels did you learn about them?
What types of electronic products related to anti-tumor therapy (such as WeChat mini-
programs, WeChat public accounts, or mobile applications) have you used in the past or
currently?
Do you find the module design of the electronic products helpful for managing your
symptoms? Which module design is your favorite, and why? In what ways has it helped you?
Do you find the content of the electronic product attractive and engaging enough for you to
use regularly? How often do you use it, and do you find it easy to use?
What do you think are the advantages and disadvantages of this electronic product? What
improvements do you think could be made for similar electronic products in the future?
6.1.4Data Collection
Prior to the formal interview, the researcher(Jutao Hu) introduced herself, explained the
purpose, content and process of the study to the participants, ensured the confidentiality of the
interview content, and guaranteed the anonymity of the study. The researcher obtained the
participants' consent and signed the informed consent form (details are provided in Appendix
6). The interview process was recorded and lasted between 15 to 25 minutes. The interviews
were conducted in a quiet, private room to minimize interruptions. During the interview, the
researcher listened carefully, explored specific questions in depth, paid attention to the
participants’ expressions, movements, and emotional responses, and took notes throughout
the interview. The recordings were transcribed into written transcripts and returned to the
participants for verification.
6.1.5Data Analysis
Within 24 hours after the interview, the recordings were transcribed into a written transcript,
and the transcribed contents were time-stamped according to the interview situation, and a
label was created. All recordings were imported into NVivo 11.0 software for data
management and analysis. Conventional content analysis was used to systematically analyze,
34
summarize and encode all transcribed data. It was a kind of research method to describe the
communication content objectively, systematically and quantitatively. Its essence was the
analysis of the information contained in the communication content and its changes. Two
research team members independently read and analyzed the data.
6.1.6Quality control
Participants were encouraged to prepare fully for the formal interview and became familiar
with the interview process. The interview data was transcribed by two researchers and
checked verbatim to minimize research bias.
6.2 Results of qualitative interview
6.2.1The demographic characteristics of the participants in the interview
A total of 12 patients were included in this study, and their demographic information is
presented in Table 6.
Table 6The demographic information of interviewees
No. Gender Year Education Diagnosis Treatment
1 Male 55 Junior high school Prostate cancer Radiotherapy
2 Male 66 Junior high school Prostate cancer Chemotherapy
3 Male 56 Senior high school Prostate cancer Radiotherapy
4 Male 47 Primary school Prostate cancer Chemotherapy
5 Male 60 Junior high school Bladder cancer Radiotherapy and chemotherapy
6 Male 58 Senior high school Prostate cancer Radiotherapy
7 Male 62 Junior high school Bladder cancer Radiotherapy
8 Female 48 Senior high school Renal cancer Targeted therapy
9 Female 56 Junior high school Renal cancer Targeted therapy
35
No. Gender Year Education Diagnosis Treatment
10 Male 65 Junior high school Bladder cancer Chemotherapy
11 Male 60 Primary school Bladder cancer Chemotherapy
12 Male 59 Senior high school Bladder cancer Radiotherapy and chemotherapy
6.2.2The topics were refined after the interview analysis
Topic1:The demand for self-management information
The demand for post-discharge anti-tumor knowledge: Certain patients express a requirement
for ongoing medical consultation regarding their knowledge of anti-tumor measures after
being discharged, as quoted below
"There will inevitably be some adverse reactions after discharge, and it is impractical to
visit the hospital for consultation every time, as it would be time-consuming and costly."
(P 10)
"While being in the hospital, I could readily contact doctors and nurses for immediate
assistance, which was very convenient. However, I also desire guidance and support
from healthcare professionals once I am at home." (P5)
Limited access to self-management information: Certain patients may seek information from
various online platforms; however, these sources often require financial resources, and the
information provided is not tailored to their specific needs.
"I also consult some medical platforms, but I can only ask two or three questions each
time, and we cannot obtain professional guidance." P8 stated, "I usually rely on Zhihu
App or other medical platforms to gather medical information, but the amount of
information obtained is limited."(P9)
Topic2:The WeChat public account of the department facilitates effective self-management
for patients
The health consultation module offered by the department's WeChat Public Account
facilitates effective self-management for patients post-treatment.
36
"Through the health consultation module, I can regularly share pictures of my ostomy
with the doctor for real-time consultations."(P1)
"I regularly access the health consultation module to acquire the medical knowledge I
require, which enhances my understanding of my condition."(P7)
The health education module offered by the WeChat platform delivers a wealth of medical
knowledge.
"The WeChat public account regularly provides me with health education tips, and I
read them when I have free time." (P7)
"I find the medical knowledge in these posts to be more comprehensive and specific
compared to what I can find on the internet, and I make sure to click on them every
time."(P12)
Topic3:The demand for enhanced self-management capabilities of electronic devices
Electronic products should feature user-friendly interfaces: Numerous electronic products are
designed for the elderly population, necessitating more convenient and simplified operating
systems.
"I don't use smartphones much because they are too complex to operate." (P8)
"Of course, I prefer using devices that are more convenient and easy to operate."(P9)
"If I find a device difficult to use, I won't continue using it."(P2)
The content design of the health education model should be more personalized and tailored.
"The medical advice provided by the department is quite general, lacking specific
guidance for different patient conditions." (P3)
"I hope to see more targeted health education materials in the future that cater to
different types of patients, enabling me to have a clearer understanding of what actions I
should take."(P6)
The functional design of modules should be more diverse.
37
"The WeChat public account of our department has a check-in function, which I believe
is a good design for promoting health behavior management. However, I often forget to
check-in."(P4)
"I wish to have an app with interactive games that can enhance my interest in learning
about health knowledge."(P5)
Regarding content format, patients exhibit varying preferences, with a majority expressing a
preference for content that combines graphics and text.
"Due to my limited memory, I find it easier to remember knowledge when it is presented
through a combination of pictures and words." (P1)
"Personally, I prefer content in the form of text, pictures, voice, or video."(P3)
6.3 Discussion
6.3.1The cognitive and self-management capacity of cancer patients in response to
cancer therapy is inadequate
Foreign studies on supporting the self-management of cancer patients have a long history,
encompassing various intervention modalities, often incorporating online approaches such as
telephone follow-up and internet-based interventions. In contrast, domestic research on the
self-management of cancer patients began relatively late, with limited implementation and a
narrow focus, primarily centered around enhancing health education post-discharge [83]. The
survey subject of this study is limited to Fudan University Shanghai Cancer Center, and the
sample size is small, which reduces its representativeness to some extent. Consequently, it is
imperative to proactively conduct prospective randomized controlled clinical trials to offer
evidence-based, scientifically valid self-management skills training and enhance the patients'
self-management capabilities.
6.3.2The diversified functions of mobile health were conducive to improving
patients' self-management ability
Some existing studies have shown that mobile health devices can help improve lung function
symptoms and psychological functions of lung cancer patients[84], improve the quality life of
38
lung cancer patients[85], and save medical costs in medical institutions[86]. Therefore, in the
future, medical personnel should develop high-quality and diversified mobile medical devices
integrating symptom assessment, symptom management, health information provision, and
interactive feedback. After that, they should carry out relevant application studies in lung
cancer patients to explore its feasibility, so as to establish a sound application system for
mobile medical self-management of lung cancer patients.
6.3.3The functionality and content of electronic products utilized in anti-tumor
therapy should be diverse and comprehensive.
Currently, numerous anti-tumor electronic products in China manifest common challenges,
limited formats, and the prevalence of standardized templates. Consequently, patients often
perceive these platforms as lacking attractiveness and usability[87]. Therefore, when designing
new anti-tumor electronic products, considerations should be made regarding their ease of use
for all individuals, the need for personalized and targeted content design catering to diverse
populations, and the incorporation of diverse and comprehensive functional module designs.
6.4 Conclusion
The in-depth interview reveals that certain patients express a demand for continuous medical
knowledge consultation and self-management electronic products. Consequently, clinical
medical personnel should conduct comprehensive evaluations of the medical requirements of
tumor patients, gain a thorough understanding of their attitudes and cognitive status regarding
post-discharge self-management, and develop electronic products for anti-tumor treatment
that integrate information with medical interventions. Furthermore, there is a need to
continuously enhance the functionality and content design of these products to better align
with the specific needs of patients.
39
7 Phase 3:The preliminary module content and function design
of WeChat Public Account
7.1 Module content and function design
The researcher herself formed a multidisciplinary team consisting of four medical staff from
related clinical departments and two software developers. Based on the preliminary demand
analysis results and image-text health education knowledge, the researcher was responsible
for the framework and the overall scale design of the platform, then the brainstorming method
was adopted to discuss with the professors and finalize the function and content design details
of the WeChat Public Account.
7.2 The preliminary modules and functions design include:
The name of the WeChat Public Account was called “FDUSCC-Nursing”.The function and
content design of the public account decided by the multidisciplinary team were as follows:
“Symptom-assessment module”: This module had two parts: the first part was the scale which
was adapted from the lung cancer immunotherapy PRO-CTCAE subset, and the second part
was the standard questionnaire (It was based on NCI-CTCAE 5.0 skin adverse reaction
grading standard), through doing these scales they can evaluate their skin symptoms and
obtain their skin toxicity severity rating.
“Symptom-management module”: It contained three main functions: health education, follow-
up management, and health consultation. They included skin medication, diet guidance, life
care, medical and treatment guidance, health education, severity warning, and more.
7.3 Workflow of WeChat public account
Patients can access FDUSCC-Nursing by scanning the QR code or other methods (such as
direct referral from medical staff), and the system will dynamically recommend relevant
scales based on the patient's condition. Upon completion of the questionnaire, if the patient
exhibits skin toxicity, the system will provide corresponding medication guidelines and
pertinent skin prevention knowledge tailored to the severity of the evaluated outcomes. If no
skin toxicity is detected, the system will deliver general skin prevention knowledge to the
patient. Additionally, after one week, the "clock" module will automatically remind the
40
patient to participate in another evaluation. The workflow of the WeChat Public Account is
illustrated in Figure 3.
7.4 An example (Dry skin) of patient manual
Step1:Scan the QR code (Figure3)
Patients can access FDUSCC-Nursing by scanning the QR code or other methods. This QR
code will be given to them after discharge or during the process of discharge health education.
Figure 3. QR code
41
Step2: User registration (Figure4)
During this step,after following WeChat Public Account,the patients will be asked to make
the user registration of their personal information.
Figure 4 User registration
42
Step3: Filling in the preliminary Pro-CTCAE questionaire (Figure5)
The patients can have access to the preliminary Pro-CTCAE questionnaire after registration. It
facilitates patients to initiate the self-report process, and if the report indicates the presence of
dry skin, they will be directed to complete the subsequent standardized questionnaire, if not,
they will be asked to move on to the next question in the preliminary Pro-CTCAE
questionnaire for the assessment.
Figure 5 Filling in the preliminary Pro-CTCAE questionaire
43
Step 4: Filling in the standardized questionnaire (Figure6)
Subsequently, participants will be asked to complete a standardized questionnaire, which is
based on the NCI-CTCAE 5.0 grading standard for skin adverse reactions. This questionnaire
will provide a more comprehensive assessment of the severity of skin toxicity. This system
will calculate the area and grade the severity of skin toxicity. After that, they will fill in the
next question in the preliminary Pro-CTCAE questionnaire and enter the next cycle.
Figure 6 Filling in the standardized questionaire
44
Step5: Evaluation results and corresponding self-protection recommendations (Figure7)
After the patients complete all the questions, the system will have a comprehensive evaluation
result and push corresponding self-protection recommendations to the patients according to
their self-assessment symptoms. If the condition of the patient is worse (reaches the warning
value), the system will automatically alarm the doctor, and the medical staff will carry out
further intervention.
Figure 7 Evaluation results and corresponding self-protection recommendations
45
Step 6:Browse the health education knowledge (Figure8)
Although the patients have completed the questionnaire, they still have more or less relevant
questions about their symptom management, at this time they can click on the "health
education" module to browse the relevant health education articles, in fact, after they
complete the form, the system will also push some articles for them.
Figure 8 Browse the health education knowledge
46
Step7: Consult about correlative information (Figure 9)
As the knowledge content of the health education articles produced by the system is limited
and universal, some patients may still have questions after reading the relevant science
articles, so they can go to the "health consultation" module for further consultation. If the
machine answers still cannot solve their problems, they can further transfer to the manual to
consult the doctors online.
Figure 9 Consulation on the correlative information
47
8 Phase 4: Usability evaluation of the WeChat Public Account
8.1 Research methods
This study used two methods to collect data for the usability evaluation. The first method used
focus group discussion to obtain opinions and further modifications. The second method used
convenience sampling to select 20 lung cancer immunotherapy patients from Fudan
University Shanghai Cancer Center to use WeChat named "FDUSCC-Nursing" and follow
up for two weeks. The patients' experience was summarized through usability interviews, and
the Post-Study System Usability Questionnaire (PSSUQ) was distributed to collect patients'
satisfaction with its use.
8.2 Focus group for internal test discussions
8.2.1 Focus Group Discussion
The focus group method was commonly used for usability evaluation and it was utilized in
this study. After constructing the WeChat Public Account, internal testing was conducted,
followed by focus group discussions. The participants in the focus group discussions included
medical staff of the researcher team and technical team. All participants possessed the
necessary experience and information required by the institute, and they were able to
communicate effectively with each other.
8.2.2 The characteristics of the participants (Table7)
Table 7 The characteristics of the participants
No. Gender Profession Education
background
Professional title Work
experience
1 Female Nursing Master Chief superintendent nurse 29years
2 Female Nursing Doctor Chief superintendent nurse 18years
3 Female Nursing Master Co-chief superintendent nurse 10years
4 Female Nursing Bachelor Nurse-in-charge 11years
5 Female Nursing Master Nurse 2years
6 Female Informatics Master Engineer 10years
7 Male Informatics Master Engineer 6years
48
10.2.3 Discussion Process
The researcher herself took charge of the discussion process,firstly her reported to the focus
group on the specific design and process of using the WeChat public account "FDUSCC-
Nursing", and the participants discussed and commented on the structure and functionality of
the public website, content saturation, ease of use, port connectivity, and display of operations.
The researcher recorded the discussion and summarized the modifications, and submitted
them to the technical team(two engineers) for modification.
8.3 Results of the focus group discussion
Here listed 6 problems identified by the research team, which were subsequently addressed by
the researchers and engineers.
Table 8The problems and the solutions
No. The problems Solutions
1 The differences betwween “limiting
instrumental ADL ”and “limiting self care
ADL”in the scale are obscure.
Using some examples to help the patients have a
better understanding of the Terminology
(Figure10).
2 The Cutoff values of 9 symptoms need to
be defined to alarm the healthcare
personnel the severity of the patients.
Set the Cutoff values to ≥grade 3 due to the
patient's condition has deteriorated beyond self-
management in that time(Figure 11).
3 The pictures and videos which are
searched in the internet have copyright
disputes.
Making the videos by ourselves and noting the
source of the pictures(Figure12).
4 Patients fill in the scale once a week,such
frequence results in inconvenience.
A new overall assessment question is added at
the beginning of the scale to reduce the burden of
patients,if the patients have no skin problems
during this week,they don’t need to fill out the next
scale.(Figure13).
5 Some of the symptoms mentioned in the
question are difficult to understand.Such
as photosensitivity, vitiligo, bullous
dermatitis ect.
Adding pictures of symptoms after each
question(Figure14).
6 The calucation of the body surface area
including front and back,but it lacks a
reminder for patients to flip the picture,so
they may leave out it.
Making a reminder animation in the picture of the
body surface area,which patients can click on the
“back”button to flip the picture(Figure15).
49
Figure 10 Some examples
50
Figure 11 Set the Cutoff values
51
Figure 12 Making the videos by ourselves and noting the source of the pictures
52
Figure 13 A new overall assessment question is added
53
Figure 14 Adding pictures of symptoms after each question
54
Figure 15 A reminder animation in the picture of the body surface
55
8.4 User satisfaction and user experience evaluation of “FDUSCC-
Nursing”WeChat
8.4.1 Research methods
A convenience sampling method was used to select 20 lung cancer immunotherapy patients
from FDUSCC， and a two-week follow-up of skin toxicity reactions in these patients was
conducted using “FDUSCC-Nursing” WeChat.
Inclusion criteria:
 Pathological diagnosis of lung cancer;
 Age ≥18 years old and having received immunotherapy;
 There are physical side-effects related to drug treatment of skin toxicity;
 Being willing to participate in the interview and physically able to do it during the
interview.
Exclusion criteria:
Patients who are having a combination of other serious life-threatening diseases;
Having cognitive impairment or mental illness.
8.4.2 Evaluation indicators of user satisfaction
Post-Study System Usability Questionnaire (see Appendix 7 for details): Fill out the Post-
Study System Usability Questionnaire (PSSUQ) for satisfaction feedback [88], including four
dimensions of usability, information quality, interface quality and overall evaluation of each
functional module, with a total of 20 items and 5 options for each item: 1 is very poor, 2 is
poor, 3 is average, 4 is good, 5 is very good. The overall Cronbach'sαof the original scale is
0.94, and the Cronbach'sαof the three dimensions of usefulness, information quality, and
interface quality are 0.9, 0.91, and 0.83, respectively.
56
8.4.3The outline of the usability interview
Do you think this WeChat Public Account is well-designed to meet your skin management
needs during immunotherapy?In your opinion, if it helps you, what specific benefits might it
offer to you?
Do you find the design and the presentation of the health education essay appealing?
What other additional functions or content do you expect or look forward to?
8.4.4Research process
After obtaining informed consent from the patients (see Appendix 8 for details), the
researcher explained the module and the process of using WeChat to the patients on a one-to-
one basis and collected information face-to-face after the patients had used it for two weeks.
In addition, during the two-week follow-up period, the researcher contacted the subjects once
by phone. At the end of the two-week study, the researchers collected data from subjects who
used WeChat during this period. On the day of the follow-up, the researcher distributed
questionnaires to collect and analyze user satisfaction and conducted usability interviews
about the user experience. If there were any questions or concerns, the researchers provided
explanations but did not advise or guide patients in any way.
8.4.5Statistical Methods
The SPSS software was used to create a database for statistical processing of the collected
quantitative data. Continuous variables were described using the mean and standard deviation,
while categorical variables were analyzed using frequency and percentage. The data from the
interviews were imported into NVivo 11.0 software for data management and analysis.
Conventional content analysis was used to analyze all transcribed data.
8.4.6 Quality control
Before using the WeChat Public Account, the research subjects were provided with one-to-
one explanations of the process of using the public account, as well as an introduction to the
specific module functions. The module of "registration" in the background of the public
account is designed to include complete information verification and to obtain contact
information from the users.
57
During the process of using the WeChat Public Account, the researchers would conduct
telephone follow-ups to urge the patients who had not completed the use task.
After the use of the WeChat Public Account, data collection and analysis would be conducted
by the researcher herself.
8.5 The results of the Post-Study System Usability Questionnaire (PSSUQ)
8.5.1The characteristic of the patients
This study included a total of 21 patients,one patient withdraw from the study because he
didn’t go to our hospital for immunotherapy.
Table 9 The characteristic of the patients
No. Gender Age Diagnosis Treatment
1 Male 64 Lung cancer Immunotherapy and targeted therapy
2 Female 58 Lung cancer Immunotherapy and chemotherapy
3 Female 52 Lung cancer Immunotherapy
4 Male 51 Lung cancer Immunotherapy
5 Male 55 Lung cancer Immunotherapy and chemotherapy
6 Female 56 Lung cancer Immunotherapy and targeted therapy
7 Male 60 Lung cancer Immunotherapy and chemotherapy
8 Male 64 Lung cancer Immunotherapy
9 Male 66 Lung cancer Immunotherapy and targeted therapy
10 Male 67 Lung cancer Immunotherapy
11 Male 65 Lung cancer Immunotherapy and chemotherapy
12 Female 66 Lung cancer Immunotherapy and targeted therapy
13 Male 54 Lung cancer Immunotherapy and targeted therapy
14 Male 53 Lung cancer Immunotherapy and chemotherapy
15 Male 54 Lung cancer Immunotherapy and targeted therapy
16 Male 56 Lung cancer Immunotherapy
17 Male 66 Lung cancer Immunotherapy and chemotherapy
18 Male 51 Lung cancer Immunotherapy and targeted therapy
19 Male 50 Lung cancer Immunotherapy
20 Male 56 Lung cancer Immunotherapy and targeted therapy
58
8.5.2User satisfaction of the patients with PSSUQ
The Post-Study System Usability Questionnaire (PSSUQ) has a total of 20 items and four
dimensions for each item.The average of the responses to all statements was shown by Mean
Score,Maximun Score and Minnmun Score in the Table10;the average of the responses to all
statements of the same dimension was shown by Mean Score(MS)in the Table11.
Table 10 The data of 20 items
Item Mean Score Maximum Score Minnmun Score
1 4.45 5 4
2 4.3 5 3
3 4.7 5 4
4 4.75 5 4
5 4.65 5 4
6 4.8 5 4
7 2.4 4 2
8 2.55 4 2
9 4.55 5 4
10 4.65 5 3
11 4.35 5 3
12 4.5 5 4
13 4.3 5 3
14 4.25 5 3
15 3.0 4 2
16 4.6 5 4
17 4.4 5 4
18 4.75 5 4
19 4.7 5 4
20 4.5 5 4
Table 11 The data of 3 dimensions
Dimension Item Mean Score Median
Usability 1-6 4.61 4.67
Information quality 7-12 3.83 4.425
Interface quality 13-19 4.26 4.4
Overall evaluation 20 4.5 4.68
PSSUQ results showed the average score of usability was 4.61, information quality was 3.83,
interface quality was 4.26, and overall evaluation was 4.5. The median of usability was 4.67,
information quality was 4.425, and interface quality was 4.4. According to the supplementary in this
questionnaire [88], the closer the average to 5, the higher the usability of the WeChat Public Account.
59
However, in this study, due to most of the data being skewed rather than normally distributed, and the
median of the responses to all statements in the usability dimension and overall evaluation dimension
should be significant, they demonstrated the patients have a good satisfaction of our Public Account,
with a high score(4.67) in usability and overall evaluation(4.68). However, the information quality
dimension was 4.425 and the interface quality dimension was 4.4, appeared that users found some
parts of the WeChat Public Account to be relatively dissatisfied, these can be shown in the mean score
of item7(2.4),item8(2.55) and item15(3.0).
8.6 The results of usability interview
The overall feedback on the usability of the WeChat Public Account is positive, the patients
believed that the WeChat could meet the demands of self-management, including scientific
and easy-to-understand health education information; reasonable function design; as well as
convenient and practical features.
The WeChat Public Account was believed capable of providing scientific and easy-to-
understand health education information for skin toxicity patients. For example, one of
the participants described the created WeChat public account as useful and easy to
understand.
“It turned out that I find myself did not know much about skin toxicity, however,some
health education information in this WeChat Public Account is easy to understand,made
me learn a lot of new and useful knowledge”.(P13)
Another participant trusted the WeChat account as scientific when he or she compared it
with another previously used app for the same purpose.
“I think the health education information in this WeChat Public Account is pretty
scientific,Before,I used to look for the information on the Xiaohongshu APP,but I didn’t
know whether the knowledge on Xiaohongshu APP was scientfic or not.”(P10)
Some patients perceived that the function design of WeChat Public Account was
reasonable,making them mange their skin toxicity better.
“It should meet my needs,sometimes when I didn’t know how to handle the skin toxicity,I
can come here to evaluate and learn some health education information”.(P7)
60
“This WeChat Public Account provides the evalution scales for me to make the
assessment of the haelth condition of my skin,so I can always know if my skin was having
the skin toxicity”.(P16)
Some patients thought the management module in this WeChat Public Account was
convenient and practical.
“Actually,I think the most favourable function is the self-assessement module,it could send
me the evalution scales every week to track the changes of my skin condition,I think it is
so convenient ”.(P3)
“When I completed the scales,it could make some recommendations for me according to
the severity of my skin toxicity,I think it is quite practical ”.(P10)
The patients believed that health education articles of theWeChat Public Account was
useful,such as the videos and pictures were well-designed; the typesetting of articles was clear
and the content was comprehensive.
Some patients perceived that the videos and pictures in health education articles were
well-designed,making it easier to accept and interesting to read.
“When I browse the health education articles,some videos in the articles should catch my
eyes,and I find them interesting and helpful”.(P11)
“Sometimes I may feel cofused when I learned some knew knowledge,but the pictures
could make the knowledge easier for me to accept. ”(P5)
Another part of patients perceived that the typesetting of health education articles was
clear and reasonable.
“I feel quite amazing when the medical guidelines appear acccording to the severity of
the self-assessment results”.(P7)
“I think it make me easier to understand the professional knowledge by the combination
of the videos,pictures and text”.(P9)
Another patient believed that the content of the health education articles was
rich,including the knowledge they want.
61
“The content of the health education articles included the daily skin protective measures
and some medication duidelines,I think they are quite comprehensive”.(P1)
Patients believed that the content and the functions of the WeChat Public Account should be
improved in the future.
Some patients hoped the quantity and the content of health education articles should
improved.
“I like browsing the health education articles in my free time,but it only have 7 articles,I
hope the quantity of the articles should be more large”.(P2)
“I think the content of the articles should be more rich and comprehensive”.(P14)
Some patients wanted to operate the WeChat Public Account more smoothly.
“When I click it,I find the Public Account may respond slowly sometiomes” .(P6)
“I do not know whether it is the reason of the network, sometimes there is a delay when
entering the module.”(P19)
Other patients hoped that there should be more functions in the WeChat Public Account.
“I hope there should be more functions,such as when I do something wrong, it can warn
me”.(P20)
“Actually,I think it can be more convenient to use after adding some new functions”.(P15)
8.7 Disscusion
8.7.1Evaluation about the usability of mHealth should comprehensive
There are numerous methods to evaluate the usability of mHealth, and the Post-Study System
Usability Questionnaire (PSSUQ) was the most commonly used questionnaire [88]. The
selection of the PSSUQ in this study represents an innovative approach to questionnaire
selection for assessing usability. The PSSUQ in this study indicates that the median of
usability was 4.67, information quality was 4.425, and interface quality was 4.4, which shows
that the users were generally satisfied with the system as a whole. However, the function
design still needs improvement. The results of the usability interviews also showed that most
interviewees had a good user experience with WeChat. However, some suggested that
62
WeChat needed improvement in function and content design. Therefore, we should consider
adding new functions and upgrading the content to make further modifications in the future. It
is worth noting that many reviews highlight the limited adoption of automated methods such
as eye tracking in evaluating mHealth [89]. The research methods used in this study had some
limitations, such as simple qualitative interviews, and questionnaires may lack
representativeness to a certain extent. Therefore, after we improved our WeChat Public
Account, further research is needed to incorporate eye tracking and other wearable devices
into the research process to enhance the objectivity of the results.
8.7.2Problems that should be paid attention to when developing mobile health
medical products for lung cancer patients
In the era of artificial intelligence, there is a certain contradiction between data sharing and
privacy protection [90]. Medical personnel and information developers should maintain a
balance between data sharing and privacy protection when developing mobile medical
software, data encryption and access control can be set to protect users' privacy[90]. At the
same time, because the age of lung cancer patients are generally older, it is necessary to
inform them in advance in a more understandable way and carry out relevant network security
education to enhance the privacy protection awareness of the elderly. In addition, the elderly
often have difficulties in "digital integration"[91], so the use habits of the elderly should be
fully considered in the design process of mobile devices, such as using voice arousal function,
operation interface is simple and clear, and using large fonts, so as to meet the demands of the
elderly and improve the effectiveness of mobile medical applications in the elderly group. In
the platform we designed in this study, we only did some routine data protection and user
privacy protection, but we did not include some details of patient data in the scope of
protection, therefore, in the future development of our Public Account, we needed to
appropriately expand the scope of data protection.
8.8 Conclusion
Firstly, we conducted six essential modifications through the focus group. Subsequently, we
administered the PSSUQ to patients and conducted a usability interview. The results showed
positive user satisfaction and user experience evaluation of WeChat Public Account but also
identified areas for potential future improvement. The template was utilized to enhance the
63
self-management of other common symptoms, which was further extended and implemented
for the purpose of post-treatment follow-up and adverse reaction monitoring in tumor patients.
64
9 Innovations and Limitations
9.1 Innovations
Aligned with the "Internet + nursing" development trend in China, this study focuses on the
development and evaluation of a self-management module for skin toxic reactions in lung
cancer patients undergoing immunotherapy. The topic selection is precise, and the intention is
clear. The content and functions of the WeChat public account module are developed based
on demand analysis and knowledge base construction. This provides a novel and convenient
way for patients to self-manage their condition, thereby improving their quality of life.
9.2 Limitations
(1) The survey subject of this study is limited to Fudan University Shanghai Cancer Center,
and the sample size is small, which reduces its representativeness to some extent.
(2) The WeChat public account developed in this study is only for patients with skin toxic
reactions of lung cancer immunotherapy. The content and functional design of the
module is only one aspect of adverse immune reactions, therefore the public account
requires further improvement in the future.
65
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Appendices
Appendix 1 Preliminary self-report scale
73
Appendix2 Further assessment scale
74
75
76
Appendix3-1 Basic knowledge of skin toxicity
77
Appendix3-2 Skin protection
78
Appendix3-3 Life care of skin
79
Appendix3-3 Medication guide
80
Appendix4 The health education videos about skin protection
81
Appendix5-1 Basic knowledge of skin toxicity
82
Appendix5-2 Skin protection
83
Appendix5-3 Life care of skin
84
Appendix5-4 Medication guide
85
Appendix 6 Informed consent for interview
Dear patient,Hello! I am a researcher from the Nursing School of Fudan University. I
sincerely invite you to participate in this study. Please read the following carefully and
consider whether to participate in this interview.
We are conducting a study on "Development and evaluation of self-management module of
skin toxic reactions of immunotherapy for lung cancer patients based on WeChat public
account". This study aims to understand the utilization of electronic devices for anti-tumor
therapy in cancer patients, summarize the evidence according to the interview research results,
establish relevant knowledge base, develop a patient self-management module based on
WeChat public account, and carry out follow-up usability evaluation. The main purpose of
this interview is to understand the utilization of electronic devices for anti-tumor therapy in
cancer patients.
You participate in the study by being interviewed and collecting data in the form of notes or
audio recordings. In the interview, you can express your own opinion.
Participation in this interview is completely voluntary and you can withdraw from the study at
any time. At the same time, your identity and what you say during the interview will be kept
strictly confidential, and your personal interview answers and research data will not be fed
back to any other person or organization except the researcher. Your name will only appear
on this consent form (only your participant number will appear on the interview materials),
and the consent form will be kept separate from the interview materials, and any information
that may personally identify you will be hidden. What appears in the results is only an
anonymous set of data. In any written or oral report of the interview, the names and
identifiable information of the persons interviewed will not be mentioned.
I agreed to participate in the interview and I know that I could withdraw from the study at any
time. In addition, I understand that all information will be kept strictly confidential by the
researchers.
Interviewee：
Researcher：
Date:
86
Appendix 7 Post-Study System Usability Questionnaire（PSSUQ）
Table 12
Score：1 is very poor, 2 is poor, 3 is average, 4 is good, 5 is very good.
Dimensions Items Score（√）
Usability 1.The account is easy to use 1 2 3 4 5
2.I feel simple applying the account 1 2 3 4 5
3.I can quickly complete the assigned task by using
this account
1 2 3 4 5
4.I feel comfortable using the account 1 2 3 4 5
5.I feel easy learning to use the account 1 2 3 4 5
6.I believe I can manage myself more efficiently if I
use this account
1 2 3 4 5
Information
quality
7.If the account has errors,it can tell me how to
handle them
1 2 3 4 5
8.Whenever I make a mistake using the account, I
can recover quickly and find the correct way
1 2 3 4 5
9.The information provided by the account is very
clear
1 2 3 4 5
10.It is easy to find the information I need on the
account
1 2 3 4 5
11.The information provided by the account is
helpful for my healthy self-management
1 2 3 4 5
12.The information arrangement of this public
account is very reasonable
1 2 3 4 5
Interface
quality
13.The interface is clear and friendly 1 2 3 4 5
14.I like to use the account interface 1 2 3 4 5
15.The account contains the functions I expect 1 2 3 4 5
16.The display of the account is easy to read 1 2 3 4 5
17.The color design of the account interface is
beautiful
1 2 3 4 5
18.The pictures displayed on the account are clear 1 2 3 4 5
19.I can still remember how to operate the account
next week
1 2 3 4 5
Overall
evaluation
20.On the whole, I am satisfied with this account 1 2 3 4 5
87
Appendix 8 Informed consent for usability evalution
Dear patient,Hello! I am a researcher from the Nursing School of Fudan University. I
sincerely invite you to participate in this study. Please read the following carefully and
consider whether to participate in this interview.
We are conducting a study on "Development and evaluation of self-management module of
skin toxic reactions of immunotherapy for lung cancer patients based on WeChat public
account". This study aims to understand the utilization of electronic devices for anti-tumor
therapy in cancer patients, summarize the evidence according to the interview research results,
establish relevant knowledge base, develop a patient self-management module based on
WeChat public account, and carry out follow-up usability evaluation. The main purpose of
this interview is to understand your feelings about the use of our public account.
You will participate in this study by completing a Post-Study System Usability Questionnaire.
Participation in this interview is completely voluntary and you can withdraw from the study at
any time. At the same time, your identity and what you say during the interview will be kept
strictly confidential, and your personal interview answers and research data will not be fed
back to any other person or organization except the researcher. Your name will only appear
on this consent form (only your participant number will appear on the interview materials),
and the consent form will be kept separate from the interview materials, and any information
that may personally identify you will be hidden. What appears in the results is only an
anonymous set of data. In any written or oral report of the interview, the names and
identifiable information of the persons interviewed will not be mentioned.
I agreed to participate in the interview and I know that I could withdraw from the study at any
time. In addition, I understand that all information will be kept strictly confidential by the
researchers.
Interviewee：
Researcher：
Date:
88
Appendix 9 Ethics Committee Grant Letter