Co-Designing Priority Components of an mHealth Intervention to Enhance Follow-Up Care in Young Adult Survivors of Childhood Cancer and Health Care Providers: Qualitative Descriptive Study

Introduction

Follow-Up Care for Survivors of Childhood Cancer

Due to advances in treatment and supportive care, the survival rate for pediatric cancer (age 0-19 years) now exceeds 80% [1]. In turn, the number of long-term survivors of childhood cancer has grown exponentially, with more than 45,000 survivors living in Canada today [2]. While this is encouraging, survivors of childhood cancer are at a lifelong risk of developing medical, psychological, and social late effects due to their cancer treatment [3]. By the age of 50 years, nearly 100% of survivors develop one or more chronic health conditions, many of which are disabling or life-threatening [4,5]. This prevalence suggests an important need for early screening and intervention of late effects to improve longer-term outcomes for this group considered vulnerable.

Consistent, cancer-specific follow-up care is associated with better long-term outcomes, including earlier identification of late effects or secondary cancers and minimized risk of morbidity and mortality [6-8]. However, less than 50% of survivors of childhood cancer attend long-term follow-up clinics [9,10]. Known barriers to attending follow-up care in Canada include limited knowledge of late effects and recommendations for follow-up care, treatment factors (eg, diagnosis and type of treatment), distance from cancer-specific follow-up clinics, and sociodemographic factors (eg, minority status and male sex) [7,10]. Furthermore, only 35% of survivors recognize that they could develop a serious health problem [11]. Young adults (aged between 18 and 39 years [12]) survivors of childhood cancer are especially at risk of not receiving consistent long-term follow-up care due to their unique developmental stage. Specifically, this is a critical and dynamic time during which major transitions occur, including greater autonomy, independent living, and financial independence, as well as a period of increased mental health concerns and risk-taking behaviors [13]. The transition from pediatric to adult health services is also particularly challenging and may result in diminished engagement in follow-up care [14].

Mobile Health Intervention for Survivors of Childhood Cancer

Development of innovative interventions is needed to better educate and engage survivors of childhood cancer in their follow-up care. An ideal intervention would meet survivors where they are, be accessible outside of formal follow-up care programs, account for the sociocultural context of survivors [15], and ultimately address the distinct needs and challenges of this population. Mobile health (mHealth) refers to the use of wireless technology in medical care to deliver health education. mHealth has shown potential to educate patients about preventative health care [16]. Furthermore, mHealth may serve to break down some of the geographic barriers and issues related to accessibility faced by survivors of childhood cancer residing in more remote or rural regions [17]. Given the widespread use of smartphones among young people [18], mHealth has the potential to address the unmet psychosocial and health care needs of young adult survivors of childhood cancer. Therefore, the use of mHealth is a promising new form of intervention to educate, connect, and empower survivors of childhood cancer on the importance of cancer-specific follow-up care.

mHealth interventions targeting young adult survivors of childhood cancer are in their infancy [19,20]. A systematic review of eHealth and mHealth interventions in pediatric cancer lends support for the feasibility and acceptability of technology-based approaches to improve outcomes of children with cancer. However, evidence of the effectiveness of interventions targeting specific outcomes (eg, emotional distress and health behaviors) remains mixed [19]. Limitations of existing interventions include restrictions to single-site pretest-posttest designs, a failure to consider an iterative process to intervention development, and a lack of engagement with patients as partners in the co-design of these programs, and intervention components must be guided by survivors’ priorities [21]. Engaging patients as partners is a feasible and efficient way to conduct clinical research, as they are considered experts through their own lived experiences [21]. Research shows that patient engagement in health research has many benefits, including higher participation rates, design of study protocols with more relevant outcomes, and more meaningful and accessible means of disseminating research to study participants and community members [21]. However, survivors are seldom included in the development of interventions directed at improving knowledge of the importance of long-term follow-up care. Therefore, co-designing with survivors of childhood cancer in addressing their own barriers to attending follow-up care may be a promising means to enable survivors of childhood cancer to understand and engage in their follow-up care and maximize their outcomes. There is also limited research that incorporates health care provider perspectives [22,23]. Health care providers that deliver follow-up care to survivors of childhood cancer may offer complementary insights on the mHealth intervention development in the context of Canadian health care systems.

Current Research

The overarching goal of this research was to co-design an mHealth intervention with young adult survivors of childhood cancer, as well as health care providers that deliver follow-up care to this population. In this research, we refer to co-design as a meaningful engagement with end users in the entirety of the research process [24]. In addition, our research approach adhered to the best practices outlined by the Strategy for Patient-Oriented Research (SPOR) of the Canadian Institutes of Health Research (CIHR) [25].

As a foundational step toward mHealth intervention development, we conducted a qualitative study to understand and identify the priority components to be included in an mHealth intervention that can engage, educate, and empower survivors of childhood cancer on the importance of attending their follow-up care. Subsequently, we validated the results by seeking feedback from multiple informants, including survivors, caregivers, health care providers, and researchers, through a community engagement event.

Methods

Overview

This study was conducted as part of a larger, multiphased project regarding survivors of childhood cancer and their follow-up care experiences [26,27]. We used patient-oriented research and qualitative descriptive study design. Qualitative description is a qualitative research framework that provides detailed experiences directly from participant perspectives [28]. This study design is well suited for health sciences research because it captures broad insights and helps address key clinical and health care services questions [29].

Study data were collected and managed using REDCap (Research Electronic Data Capture; Vanderbilt University) electronic data capture tools hosted at the University of Calgary. REDCap is a secure, web-based software platform designed to support data capture for research studies, providing (1) an intuitive interface for validated data capture, (2) audit trails for tracking data manipulation and export procedures, (3) automated export procedures for seamless data downloads to common statistical packages, and (4) procedures for data integration and interoperability with external sources [29,30].

Ethical Considerations

Ethics approval for this study was granted by the Health Research Ethics Board of Alberta—Cancer Committee (HREBA.CC-20-0248). As this project involved human participants, informed consent was obtained from all participants. Data collected were deidentified before data analysis. Participants were compensated for their time in the study (refer to the Procedure section for compensation details).

Patient and Public Involvement

In line with best practices of CIHR SPOR [25], we have reported the background, objectives, methods, and results of this project based on the checklist from the Guidance for Reporting Involvement of Patient and the Public Short Form [31]. Patient partners were involved as coresearchers throughout the project, including study design, recruitment, data collection, interpretation of results, and knowledge dissemination. Patient partners were compensated financially for their time.

Participants

Survivors were eligible to participate in the qualitative study if they were (1) currently aged between 18 and 39 years, (2) diagnosed with cancer before the age of 18 years, (3) at least 5 years after diagnosis and/or 2 years after treatment, and (4) currently living in Canada. Health care providers were eligible to participate in the study if they were (1) delivering clinical care to survivors of childhood cancer, (2) practicing for >5 years, and (3) currently living in Canada.

Participants were eligible to participate in the community engagement event if they were (1) survivors of childhood cancer as defined earlier, (2) parents or caregivers of survivors of childhood cancer, (3) health care providers that provide follow-up care to survivors of childhood cancer as defined earlier, or (4) researchers of childhood cancer survivorship.

Recruitment

Several strategies were used to recruit individuals from diverse sociodemographic backgrounds as part of the larger, multiphased project [26]. First, survivors and health care providers were informed about the study by their local or provincial long-term follow-up clinics, where they were given the option to complete a consent-to-contact form and subsequently invited to participate by the study team. Second, patient partners assisted in recruiting survivors across geographical areas in western, central, and eastern Canada. The practice of patients recruiting patients to integrate diverse patient perspectives is supported by the principle of inclusiveness according to the CIHR SPOR framework [25]. Third, social media outreach was used, including X (formerly known as Twitter; X Corp), Facebook (Meta Platforms), and Instagram (Meta Platforms). This strategy involved recruiting through patient and young adult cancer advocacy groups and communities by sharing study graphics (eg, Childhood Cancer Survivor Canada and #AYACSM).

Participants that completed other phases of this project were invited to participate in this qualitative study. Participants that participated in other phases of the project, as well as those who did not participated in the project, were all welcome to attend the community engagement event.

Procedure

We conducted 5 online focus groups with survivors of childhood cancer on Zoom (Zoom Communications Inc) between March and July 2022. Focus group discussions lasted approximately 90 minutes. Eligible participants were contacted and provided with a link to consent to the study on the web through REDCap. They were then provided with a Zoom link and date for the focus group. Participants were compensated with a CAD $25 (US $17.91) e-gift card for their participation. Similarly, we conducted telephone interviews with health care providers who followed the same consent process as survivor participants. Each interview lasted 15 to 20 minutes. Health care providers were also compensated with a CAD $25 (US $17.91) e-gift card for their participation.

We hosted a half-day online community engagement event via Zoom in October 2022. The event was cofacilitated by 2 academic researchers (FSMS and SHJH) and 2 patient partners (RD and IR). A collaborator from a digital technology company, Cambian, attended the event to provide input from a feasibility and usability standpoint. Cambian specializes in providing collaborative health care information services. A graphic recording artist from Fuselight Creative attended the event to visually capture central and representative ideas generated from the community event. Fuselight Creative is a visual facilitation company that specializes in the strategic use of graphic recording to enhance interactive engagement and learning in community events.

Eligible participants were asked to register for the event and provide their email address to receive the Zoom link. Registered participants provided verbal consent to partake on the day of the event on the web via Zoom. Participants were compensated with a CAD $25 (US $17.91) honorarium for their participation in the community engagement event. Likewise, patient partners (RD and IR) were compensated for their cofacilitation of the event.

Measures

Sociocultural Demographics

For the qualitative study, survivors completed an initial questionnaire regarding their sociodemographic background, including age, sex, gender, relationship status, family composition, and race and ethnicity. Survivors also completed questions regarding their clinical history, such as their diagnosis, age at diagnosis, type of treatments received, and number of years after treatment. Health care providers completed a similar questionnaire to survivors regarding their sociodemographic background, as well as questions regarding their professional experiences, including the number of years practicing and years of experience delivering care to survivors of childhood cancer.

Interview Guide

Survivors engaged in an online focus group discussion, guided by a semistructured interview guide exploring the development of an mHealth intervention for survivors of childhood cancer to optimize their engagement in follow-up care. Questions were codeveloped with patient partners and centered on the development of content (eg, “What are your thoughts on creating a platform for survivors?”), education (eg, “What type of information would you want included?”), communication (eg, “Would you want an opportunity to interact with other survivors and/or healthcare providers?”), and engagement (eg, “What are some features that could help you engage in your follow-up care?”) related to the mHealth intervention.

Health care providers engaged in an individual telephone interview. The same set of semistructured interview questions was administered, with wording modified to reflect the health care providers’ perspective on the same topic. The complete set of questions asked during the focus groups can be found in Multimedia Appendix 1.

Small and Large Group Discussions

As part of the community event, participants engaged in interactive small and large interactive group discussions. Facilitators posed semistructured questions on the accuracy, representativeness, and resonance of the themes conceptualized from the data. During small group discussions (3-4 participants per group), differences in perspectives were discussed in the presence of an observer who was a member of the research team. The observer’s role is to ensure equal participation among members and that no one individual or group’s views are dominant over others. The observer takes notes, facilitates the flow of conversation and turn-taking among participants, and shares a summary of key discussion points with members to ensure the accuracy of notes taken. Key discussion points from the small group sessions were subsequently integrated into the larger group discussion (all participants) to achieve consensus, facilitated by 2 main facilitators (SHJH and FSMS) and 2 patient partners (RD and IR). Large group discussions were facilitated using interactive media features, including a Google Jamboard, Mentimeter, and polling on Zoom.

Satisfaction Survey

Participants completed a web-based questionnaire within 1 week following the event. Questions were derived and adapted from the Public and Patient Engagement Evaluation Tool [32]. Participants were asked to rate the extent to which they agreed with statements regarding their experience at the event, using a 5-point Likert scale (1=strongly disagree and 5=strongly agree). Questions were centered on participants’ understanding of the nature of the workshop (eg, “I had a clear understanding of the purpose of this community workshop”), as well as whether the workshop met the stated objectives described herein. We also solicited feedback from participants using an open-text response format.

Analysis Plan

Sociodemographic information gathered from participants was summarized using descriptive statistics and analyzed with SPSS (version 28.0; IBM Corp). Qualitative descriptive data gathered from focus groups and interviews were audio-recorded, transcribed verbatim, and deidentified. Transcripts were subsequently analyzed using reflexive thematic analysis [33]. Reflexive thematic analysis is a theoretically flexible analytical approach used to identify patterns of meaning and conceptualize them into themes. This type of analysis is commonly used in qualitative description studies [34]. In total, 5 researchers (SHJH, BH, RD, KM, and HW) conducted the analysis according to the steps outlined by Braun and Clarke [33]. First, researchers read the transcripts several times to familiarize themselves with the data. Next, researchers developed a preliminary coding framework and coding book. Each researcher independently coded the same transcript and met as a team to compare coding choices and ensure alignment in the interpretation of the codes. Following this, the remaining transcripts were each analyzed by 2 researchers. Theme abstraction took place iteratively among the researchers by meeting regularly to discuss and review each researcher’s interpretations. Any differences in theme abstraction were reconciled through open dialogue until a consensus was reached. Data analysis was supported using NVivo (version 14; Lumivero) [35], a qualitative data management software. Multimedia Appendix 2 includes a reflexivity statement from all researchers involved in the thematic analysis.

Member checking, also known as response validation, is a validation technique used in qualitative health research and has been recognized as a method of rigor to enhance the trustworthiness of qualitative data [36]. Member checking was conducted with multiple informants, including survivors, caregivers, health care providers, and researchers, through an online community engagement event. Member checking was achieved through multiple methods, including small and large group discussions, satisfaction surveys, and graphic recording throughout the community engagement event.

Results

Participant Characteristics

In total, we conducted 5 online focus groups with 22 survivors of childhood cancer, with a range of 4 to 6 participants present per focus group. The mean age of survivors was 29.19 (SD 4.78) years. Over 95% (21/22) of survivors indicated that their assigned sex was female and likewise that their gender identity was female. Most survivors (19/22, 86%) identified as White. Survivors came from 6 provinces, most prevalently from Alberta (10/22, 46%), Ontario (5/22, 23%), and Nova Scotia (4/22, 18%). Most survivors (18/22, 82%) lived in an urban geographical region. Survivors reported a history of leukemias (11/22, 50%), lymphomas (6/22, 27%), and solid tumors (5/22, 23%) as the most common diagnoses. The average age at diagnosis was 10.59 (SD 5.45) years, and the mean time off treatment was 17.45 (SD 6.81) years.

We conducted individual telephone interviews with 7 health care providers. In total, 6 health care providers indicated that their sex assigned at birth was female and that their gender identity was female. All health care providers identified as White. Health care providers included 3 registered nurses and 4 allied health professionals. All health care providers had experience delivering care to survivors of childhood cancer; 29% (2/7) of the participants had between 1 and 5 years of experience, 43% (3/7) of the participants had between 5 and 10 years of experience, 14% (1/7) of the participants had between 10 and 15 years of experience, and 14% (1/7) of the participants had >15 years of experience. Health care providers were from Alberta (2/7, 29%), British Columbia (3/7, 43%), Manitoba (1/7, 14%), and Ontario (1/7, 14%). All health care providers reported residing in urban regions. A summary of participant demographic characteristics is provided in Table 1.

Priority Components to Be Included in an mHealth Intervention for Survivors of Childhood Cancer and Health Care Providers

Connections: Establishing Connections Is a Top Priority

Survivors’ Perspective

Survivors spoke of the importance of being able to connect with other survivors because they feel validated by those who understand that the cancer journey does not end when treatment ends and that, in fact, the cancer experience is lifelong (quote 1). Survivors also felt that the ability to communicate with other survivors on mHealth would allow them to establish a sense of community through a shared experience and shared understanding of having been impacted by cancer (quotes 2 and 3). Survivors specified that such a connection could be a therapeutic process as well as an opportunity to provide peer support (quotes 4 and 5). Survivors also discussed the possibility of being able to connect with their health care provider through additional means outside of clinical care (quote 6). Finally, survivors emphasized that being able to establish these connections with other survivors of childhood cancer as well as health care providers was a means of self-empowerment and self-advocacy because they could take control of their own care and experiences (quotes 7-9).

Health Care Providers’ Perspective

Health care providers also recognized the importance of connecting survivors with one another. Health care providers shared that these social connections are likely to mitigate feelings of isolation for survivors in their cancer experience and, in turn, empower them to engage in their follow-up care (quotes 10 and 11). Health care providers also expressed a desire to connect with other health care providers across Canada for the opportunity to consult and learn from one another about pertinent matters in delivering follow-up care for survivors of childhood cancer (quote 12). In addition, health care providers shared that being able to connect with survivors (eg, navigating appointments and/or scheduling), as well as with primary care providers, may be a useful feature to incorporate in mHealth to enhance the efficiency with which they deliver follow-up care (quote 13; Textbox 1).

Education and Information: Having a Cancer History Profile Can Be Useful

Survivors’ Perspective

Features that provided information on and tracking survivors’ cancer history were some of the most prevalent themes discussed by survivors. Specifically, survivors emphasized the importance of having their cancer treatment history summarized in the form of a cancer profile, along with information regarding the type of follow-up care they receive, a summary of their follow-up care visits, and a summary of past and current medications and treatments (quote 14). Participants highlighted several benefits of this feature in an mHealth intervention, including being able to recall their medical history during appointments with new health care providers, establishing a shared understanding between survivors and health care providers, addressing any gaps in communication, and making their follow-up care more accessible (quotes 15 and 16).

Health Care Providers’ Perspective

Health care providers identified a need for a cancer profile so that information such as treatment history (eg, cumulative doses and exposures) can be summarized in 1 hub (quote 17). Furthermore, health care providers indicated that a cancer profile may serve as an effective tool to communicate with survivors about their follow-up care, including the importance of screening for late effects, provided that the cancer profile can include a summary of potential risks of late effects related to diagnosis and treatment (quote 18). Similarly, health care providers explored the possibility of linking updated survivorship guidelines to a cancer profile, which may be informative for survivors of childhood cancer (quote 19; Textbox 2).

Engagement: Issues Related to Accessibility and Health Equity Impact Survivors’ Engagement in Their Follow-Up Care

Survivors’ Perspective

Survivors discussed the challenges related to accessing their follow-up care, referring to the ease of reaching and using health care services, and how these barriers reflected issues related to health inequities that some experience. For example, survivors felt that all survivors requiring follow-up care should be able to access their follow-up care, and yet, disparities exist in this regard (quote 20). Survivors spoke about their difficulty in accessing follow-up care due to geographic barriers, especially for those that reside in more rural or remote communities (quotes 21-23). In addition, survivors shared that features such as appointment reminders, accommodation provided for transportation, and being able to ask questions to health care providers in an mHealth intervention may be ways that can help increase access to their follow-up care (quote 24).

Health Care Providers’ Perspective

Health care providers recognized that health inequities exist in the current service delivery of follow-up care to survivors of childhood cancer and highlighted the need to make mHealth easily usable and accessible (quote 24). Health care providers also identified practical strategies that can help survivors engage in their follow-up care, such as displaying a list of the upcoming appointments on mHealth or outlining follow-up care in a stepwise fashion so that survivors that face cognitive effects of their treatment can be accommodated and supported in their engagement with follow-up care (quotes 25 and 26; Textbox 3).

Resources: Providing Personalized Resources Can Help Enhance the Survivorship Experience, Psychosocial Well-Being, and Reproductive Health

Survivors’ Perspective

Survivors highlighted the need for resources specific to the unique needs of cancer survivorship, highlighting that personalization helps normalize the experience of survivors of childhood cancer (quotes 27 and 28). Survivors also expressed a desire for more mental health resources. They readily endorsed the impact of diagnosis and treatment on their social, emotional, and mental well-being, especially wanting to know more about the notion of posttraumatic growth and posttraumatic stress in survivorship (quotes 29-30). Survivors also highlighted major gaps in resources dedicated to reproductive health, even though there is a negative impact of cancer treatment on fertility and family planning (quote 31). Survivors also noted that educational resources to support survivors’ transition back to school are largely absent (quote 32). Finally, survivors discussed the importance of being able to access resources that are up-to-date and reflect recent advances in science and research (quote 33).

Health Care Providers’ Perspective

Health care providers identified, as a priority, the need for resources dedicated to survivorship experience, financial assistance, and health care transitions (quote 34). They also identified a gap in psychosocial and educational supports (quote 35). Moreover, health care providers spoke of the need for better resourcing to help survivors understand and navigate their fertility and family planning (quote 36). Finally, health care providers discussed the importance of being able to share resources that are updated and reflect advances in research and science (quote 37; Textbox 4).

Personalization: There Is a Need for Personalized Features on mHealth, Including Consideration of Survivors’ Readiness; Emotional Impact of Accessing Follow-Up Care; Privacy; and Right to Accurate, Moderated Information

Survivors’ Perspective

Survivors highlighted several important considerations to help personalize the mHealth intervention. For instance, survivors described the importance of providing options so that survivors can feel that they have a choice in when and how they wish to navigate mHealth in their cancer journey (quotes 38 and 39). Furthermore, survivors discussed the emotional impact of accessing their follow-up care, highlighting that the survivorship experience is diverse and that they want to be able to establish their own boundaries in accessing their follow-up care and cancer history through mHealth (quote 40). In addition, survivors discussed the importance of incorporating privacy features to protect their identity and health information, whether that is from their family members and/or other members of the mHealth community (quotes 41 and 42). Finally, survivors recognized that, while they would value being able to communicate with other survivors in a forum on mHealth, there is a need to modulate all communication to ensure that any information or resources shared are accurate and not to be mistaken with professional recommendations (quote 43).

Health Care Providers’ Perspective

Health care providers expressed their concern for any information that survivors receive that is not communicated directly from a health care provider (quote 44). They expressed a desire to ensure that survivors receive accurate knowledge and resources to support their follow-up care (quote 44). Health care providers also shared their concern for the limited capacity of current health care providers in being able to support the growing population of survivors (quote 45; Textbox 5).

Validating Findings Facilitated Through Community Engagement

A total of 31 participants, including survivors of childhood cancer (n=10, 32%) and their caregivers (n=2, 6%), health care providers (n=6, 19%), researchers (n=11, 35%, including 2 patient partners), and collaborators (n=2, 6%) participated in the community engagement event to review and verify the qualitative results gathered.

Small and Large Group Discussions

Participants endorsed the accuracy of themes derived regarding the core components to be included in mHealth. Participants explored additional contexts in the development of an mHealth intervention, including considerations for family members (eg, families and siblings) and the practicalities of preserving privacy and confidentiality on a technology-based intervention. Participants also reported feeling heard through the graphic recording process. The final graphic recording is shown in Figure 1.

‎

Satisfaction Survey

Some participants (8/22, 36%) completed a web-based questionnaire assessing participant engagement at the event. On average, participants strongly agreed that they felt that their views were heard (mean 5.00, SD 0.00) and that they were able to discuss their views freely (mean 4.71, SD 0.45). Participants also strongly agreed that they felt they had enough information to contribute to the topics discussed (mean 4.71, SD 0.35) and that a wide range of views on the topics were shared (mean 4.71, SD 0.45). Participants mostly agreed that they had a clear understanding of the purpose of the community workshop (mean 4.14, SD 0.35). In addition, participants were asked to indicate the extent to which they agreed that the community engagement event objectives (ie, to co-design mHealth, to engage with others, and to provide feedback on study results) were achieved, and their responses ranged from mostly to strongly agreed (mean scores ranging from 4.00 to 4.71, SD scores ranging from 0.45 to 0.83). Importantly, participants strongly agreed that they felt confident that the input provided through this event would be incorporated by the study team. A summary of participant responses is reported in Tables 2 and 3.

Discussion

Principal Findings

It is important that survivors of childhood cancer receive routine health care follow-up, yet many survivors do not understand the importance of their follow-up care or have limited knowledge on their need for follow-up care. Our study aimed to amplify the voices of young adult survivors of childhood cancer in identifying the priority components to be included in an mHealth intervention that can help educate and engage survivors in their long-term follow-up care.

Our approach was unique in using co-design and a qualitative research framework and adhering patient-oriented research principles to engage in mHealth intervention development [21,37]. We uniquely incorporated perspectives from survivors of childhood cancer and health care providers that deliver cancer-specific follow-up care. Patient partners collaborated with our team over the entirety of the research process, including study design, recruitment, data collection (ie, cofacilitation of focus groups and interviews), interpretation of results, and knowledge dissemination. Furthermore, a community engagement activity was cofacilitated with patient partners to enhance the validity of qualitative descriptive data gathered.

Limited mHealth interventions have been created with survivors of childhood cancer despite its rising potential to improve health [38]. Most efforts have focused on patients who are on active cancer treatment. For instance, a systematic review indicated a positive effect of mHealth interventions on improving the health-related quality of life of adult patients with cancer [38]. Other studies have explored delivering a survivorship care plan and an app for enhancing self-management for adolescents and young adults [39]. Few studies have effectively engaged in the co-design of mHealth, and even less work has been conducted with young adult survivors of childhood cancer in this regard, as well as with health care providers. Therefore, our work provides important and novel insights from the perspectives of individuals with lived experience of cancer and health care providers regarding their follow-up care experiences. Specifically, results shed light on the priority areas necessary to increase knowledge of and engagement in follow-up care for survivors of childhood cancer, establishing a critical foundation in mHealth intervention development.

In total, 5 major themes were conceptualized as the priority components of the mHealth intervention. Many of the themes are consistent with the existing literature on the unmet needs of survivors of childhood cancer. For example, survivors and health care providers from our study identified a lack of knowledge of diagnosis and treatment, as well as associated late effects, for survivors. These results are consistent with past work showing that most survivors of childhood cancer fail to recognize their risk for developing a serious health condition [11,40]. Furthermore, previous research indicates that survivors of childhood cancer need a better way to learn about and engage in their own health information [10,41]. Indeed, our findings indicate a need for advanced means to deliver follow-up care knowledge, such as the use of a mobile app or website, as well as the need for creative features to enhance the follow-up care experience, such as reminders for appointments and a cancer profile to consolidate health history information.

Another notable theme generated was the need for more education and support during health care transitions. This builds on an extensive body of literature on health care transitions for young adults impacted by cancer [42]. There are cancer-specific risks and health care needs of survivors of childhood cancer that are distinct from those with other chronic illnesses [43]. Therefore, our research lends further support for the importance of personalized care for young adult survivors during their health care transition from pediatric to adult health care, one that prioritizes educating survivors on their potential late effects related to their diagnosis and treatment, as well as the utility of engaging in consistent surveillance to promote longer-term optimal outcomes.

Survivors expressed some hesitation toward having regular access to their cancer history information and therefore discussed the importance of being able to have choice and control in how they navigate mHealth. These findings are consistent with existing work documenting experiences related to posttraumatic stress experienced by survivors [44] and the importance of prioritizing a trauma-informed approach in intervention development.

Several other themes were generated from this study that are novel and relevant to building an mHealth intervention for survivors of childhood cancer. Survivors and health care providers emphasized the importance of establishing connections with other survivors and health care providers. These results likely reflect a sense of disconnect that survivors experience and a desire to broaden opportunities for meaningful connections. Indeed, survivors spoke about the need to explore their identity beyond their cancer journey. Taken together, these results are consistent with past work documenting that adolescents and young adults with cancer experience substantial psychosocial challenges, including peer and family relationships and personal growth stresses [45]. Likewise, health care providers echoed the importance of cultivating connections among survivors to address feelings of isolation on their cancer journey. Importantly, health care providers also highlighted a desire to connect with other health care providers that provide follow-up care across Canada, emphasizing the importance of connecting with and consulting one another to stay informed of current concerns and practices in survivorship. Few studies have addressed the unmet needs of health care providers in delivering follow-up care to survivors of childhood cancer [23]. Our study provides unique insight of both survivors and health care providers, offering a more contextualized understanding of how to improve follow-up care from multiple perspectives.

Issues related to accessibility of follow-up care and health equity were a prominent finding from our research. These outcomes contribute to our understanding of some of the geographic barriers faced by survivors from rural or remote regions, as reflected in our study sample. Developing an mHealth intervention will aim to address these barriers by connecting survivors to their follow-up care through technology. However, barriers to health care are complex and dynamic and require consideration of factors beyond the individual, including health care providers and health care systems factors, to alleviate health disparities [46]. Therefore, further work is needed to capture the complete and intersecting effects of accessibility factors, as well as other inequities faced by survivors of childhood cancer, on their receipt of high-quality health care. These are important considerations in intervention development to ensure that the burden of change is not placed solely on survivors of childhood cancer but rather recognized as a systemic problem that requires multilevel intervention.

Our research incorporated a response validation technique, member checking, to enhance the rigor of qualitative data gathered. Previous qualitative work using member checking lacked detail and discussion in the implementation of the technique. Absence of this reporting may be confounded by epistemological and methodological challenges [36]. In this research, we conducted a comprehensive assessment and report of member checking using a multiinformant, multimodal approach to strengthen the credibility and validity of data gathered. The strength of this approach is to demonstrate the true and iterative process that we took to achieve consensus among researchers and those with lived experiences in the research process. Our goal with this undertaking is to enhance the transparency, accessibility, and replicability of best practices in qualitative health research.

Limitations and Future Directions

We review several important limitations to be considered when interpreting the results of this study. A major strength of this research was leveraging technology for participation (ie, online focus groups and community engagement). This meant an increase in accessibility to those residing in remote or rural regions. However, reliance on technology also meant that participants from lower levels of income, or some individuals from geographically more remote or rural regions of Canada, may face greater barriers to participating because they are less likely to have access to technology. Future research incorporating community outreach, phone-based participation, or compensated travel to the local context can help to mitigate this challenge in research recruitment. Input on how we can account for potential technological limitations in reaching individuals from more remote or rural regions of Canada will be important as we build the intervention.

Research shows that a diversity of perspectives drives innovation [47]. Participants from our study offered important insights into accessibility issues that contribute to health inequities for survivors of childhood cancer. However, our sample nonetheless lacked representation and voice from individuals from diverse backgrounds (eg, diversity in ethnicity, gender identity, sex, language use, and geographic regions) and/or who are not engaged in their follow-up care. We recognize that a potential bias of our sample is that most of our sample reported attending their follow-up care. We are missing the voices of individuals who are not engaged in their care at this time, and future research leveraging purposive sampling of those not regularly attending their follow-up care would offer us important insights into the barriers they face in attending care. In addition, there is a notable disparity in gender representation of participants, with 86% (19/22) of participants identifying as female gender. Studies have found that female gender predicted attendance to follow-up care, such that female participants were more likely than male participants to attend follow-up care [48]. This bias in our sampling reinforces that our findings reflect the views of those who are attending their follow-up care. In addition, there are many factors that contribute to a lack of gender representation in cancer research, including researcher bias, gender stereotypes, and unequal social opportunities [49]. Importantly, a review of gender representation trends in psychosocial survivorship research showed that there is a trend toward a more balanced representation of men and women over a 15-year period (2007 and 1992) [49]. Taken together, our skewed sample indicates an important need to continue to engage with survivors from equity-deserving groups, particularly given the increasing diversity of the Canadian population.

Research shows that members of equity-deserving groups face significant barriers to accessing high-quality and accessible health care [50,51]. Without knowledge of the perspectives and experiences of these individuals, we are missing critical information that can help to address health disparities and, in turn, bring greater awareness to the importance of follow-up care surveillance and attendance for those from underrepresented and underserved communities. Implementation of safe, inclusive, and culturally responsive recruitment strategies is needed to increase representation in pediatric cancer research [52].

Finally, this study solicited feedback from participants and other important parties to enhance the credibility and validity of the results. We demonstrated rigor of data by using a multiinformant and multimodal approach to achieve consensus. However, the response rate for completing the satisfaction survey for our community event was 36%, so responses gathered on patient engagement may not be representative of feedback from most attendees. Another limitation of our community engagement event is that we did not determine whether attendees included those who previously participated in the focus groups and interviews. Therefore, the feedback gathered at the community event may be influenced by participants’ familiarity with the study. Future research establishing and implementing a comprehensive and systematic evaluation of patient and public engagement is necessary to strengthen the rigor of our evaluative framework and enhance patient engagement and research.

The next step of this multiphased project is to build an innovative and accessible mHealth intervention prototype based on the core components identified and grounded in an established conceptual framework for co-design of intervention development. Results from this study have provided the bedrock to progress in our development of an mHealth intervention for survivors of childhood cancer to enhance their knowledge of and engagement in their follow-up care.

Conclusions

In this study, we identified core components to be included in an mHealth intervention to increase the knowledge of and enhance follow-up care engagement for survivors of childhood cancer. We engaged in a rigorous and iterative co-design process with survivors of childhood cancer and health care providers. We incorporated a community engagement event to validate our findings with a broader audience of community members. Findings will inform the next phase of our multiphased, co-design project, ultimately aiming to improve follow-up care and long-term outcomes for survivors of childhood cancer.