Exploring the experiences of cancer survivors with a mobile survivorship care plan application: A mixed-methods study

Abstract

Background:

Survivorship care plans (SCPs) aid cancer survivors in transitioning from active treatment to long-term survivorship. Mobile health approaches to survivorship could enhance the effectiveness of SCPs. This study aims to better understand the perspectives and preferences cancer survivors have toward a mobile SCP application.

Methods:

Qualitative data were collected via semi-structured interviews among participants from the POST-Treatment Health Outcomes of Cancer Survivors (POSTHOC) randomized controlled trial, which delivered an SCP via an app or a static document. Exit interviews were analyzed using a qualitative descriptive approach. Then, responses were systematically categorized into structured variables for quantitative and mixed methods analysis.

Results:

Twenty-eight interviews were conducted among survivors who had recently completed curative treatment. Six key themes emerged: usefulness of SCPs, monitoring lifestyle behaviors and symptoms, lifestyle support, digital health, self-management and independence, and study support and design. Participant suggestions for feature customization and peer support highlight the need for SCPs to serve both physical and psychosocial needs.

Conclusions:

Cancer survivors found the mobile SCP application beneficial for promoting healthy behaviors and enhancing symptom management, physical activity, and nutrition. With further advancements in mobile health technologies, the SCP can evolve into an adaptable and interactive tool that supports cancer survivors through transition to long-term survivorship.

Introduction

Advances in early detection and treatment have led to an increase in the number of cancer survivors, a trend expected to continue as the medical field advances. In the United States alone, the number of people with a history of cancer is projected to exceed 22 million by 2035 [1]. Despite more optimistic clinical outcomes, the transition from cancer treatment to long-term survivorship remains an especially vulnerable time for many cancer survivors. The intensity and frequency of support from the medical care team decline, and consequently, many face new challenges with the management of late effects of cancer treatment, maintaining overall health, and navigating the psychological and social dimensions of recovery, such as emotional adjustment and reintegration into everyday life [2–4]. These challenges highlight the importance of continued and structured support during the transition to post-treatment survivorship.

The survivorship care plan (SCP) was developed to aid survivors in transitioning from active treatment to long-term survivorship [5]. The SCP is a personalized document that provides details of the patient’s diagnosis, treatments received, potential long-term effects of cancer treatment, recommended follow-up care, and guidelines on healthy lifestyle behaviors to enhance quality of life and support overall health. Such a tool is designed to help mitigate the challenges faced by post-treatment cancer survivors, who often manage their care among multiple providers and settings, resulting in fragmented follow-up care and increased risk of late effects going unrecognized [6]. While initially received with enthusiasm by the field, the implementation of SCPs met hurdles and the effectiveness of the document remain inconclusive [7]. Barriers to implementation of SCPs include time constraints for healthcare providers to generate SCPs, limited organizational resources for integration into routine care, and poor coordination between oncology and primary care [8–10]. Thus, mobile health (mHealth) tools are promising for overcoming these barriers by automating SCP generation, increasing the accessibility of SCPs, including real-time tracking of health behaviors, providing evidence-based resources, and displaying personalized recommendations for lifestyle modifications to enhance patient self-efficacy and independence post-cancer treatment.

Digital health interventions, delivered through smartphones, apps, or wearable devices, are increasingly being integrated into survivorship care and have been associated with improved health-promoting behaviors, such as increased physical activity [11] and enhanced adherence to nationally recommended dietary guidelines [12]. Compared to static paper SCPs, digital SCPs enable longitudinal data collection to identify trends in post-treatment symptoms and behaviors, which can be shared by patients with clinicians and updated as needed [13,14]. Although these features have the potential to improve survivorship care, limited digital literacy, lack of access to technology, and concerns about patient privacy limit their use [15–17].

The POSTHOC application (“app;” named for POST-treatment Healthcare Outcomes for Cancer Survivors) was developed to digitize the SCP and provide a platform for survivors to monitor symptoms and health behaviors such as nutrition, physical activity, and sleep [18]. The POSTHOC app was tested in a phase I/II randomized controlled trial and showed preliminary efficacy in improving global symptom burden [19]. To continue building this tool and other digital technologies to best address survivors’ needs in this transition phase, the primary aim of this analysis was to explore patients’ perspectives and preferences towards a beta version of the POSTHOC mobile app.

Methods

Study Design

This mixed-methods analysis employed remote semi-structured interviews to explore the experiences of cancer survivors with the POSTHOC smartphone app. All procedures were approved by the University of Maryland, Baltimore (UMB) Institutional Review Board (IRB, HP-00100473), and all study participants provided informed consent. The consolidated criteria for reporting qualitative research (COREQ) guidelines were used in the development of this report [20].

The parent phase I/II randomized controlled trial tested the effects of a mobile behavioral health intervention on symptom burden in post-treatment cancer survivors. This study was pre-registered on clinicaltrials.gov (NCT05499663). Recruitment occurred at the University of Maryland Medical System cancer centers. Eligible participants were aged ≥18 years, had a cancer diagnosis; were within 12 weeks of completing chemotherapy, radiotherapy, or surgery for cancer; had received, planned to receive, or were open to receiving an SCP; and had access to a device capable of running the POSTHOC and Fitbit apps. Further details of the study design and methodology are available in the published protocol paper [18] and primary aims paper [19]. To be eligible for this analysis, participants must have completed an exit interview [28 of 34 (82.4%) randomized participants].

Participants were randomized 2:1 to either the POSTHOC group or the control group for the 12-week study. Those in the intervention group had access to the SCP in the POSTHOC app, as well as features for symptom monitoring and accountability for diet and exercise. Those in the control group used a “lite” version of the app, which lacked access to the mobile SCP, symptom monitoring, diet, and physical activity features. Instead, they were given a paper and/or digital SCP document via email (participants’ choice) and downloaded the app solely for research data collection. Participants in the POSTHOC group were asked whether they wanted to focus on exercise or nutrition. Participants who prioritized exercise were encouraged to wear the Fitbit every day to track step count, minutes spent in moderate-to-vigorous activity, and time spent asleep, all of which were displayed in the POSTHOC app. Data were tracked against participant goals, which were developed with a clinician scientist (BSN, RN, MPH or MS, CNS, LDN) based on their baseline activity level and survivorship guidelines from the National Comprehensive Cancer Network [28][21]. If nutrition was prioritized, participants reported daily servings of various food groups in the app: fruits, vegetables, whole grains, sweet foods, sugar-sweetened beverages, and alcohol. Participants in the POSTHOC group were also encouraged to self-report symptoms experienced in a day by selecting from a list of symptoms (e.g., pain, nausea, fatigue) in the app.

Data Collection

Demographic and clinical characteristics were collected using a combination of chart review and participant-reported data. All participants, regardless of their group assignment, were invited to complete an exit interview after completion of the 12-week intervention. Participants were interviewed through a semi-structured format [22] via one-on-one telephone interviews. Interviews were conducted by one of four trained team members: AK (female, PhD in Human Nutrition and oncology clinical researcher), CC (female, Licensed Nutritionist/Dietitian and Clinical Research Coordinator), SJ (female, Bachelor’s in Neuroscience and Clinical Research Coordinator), or IA (female, Registered Nurse and PhD student in Nursing) and were audio-recorded with participant consent. The interview guide was developed by the study team to explore participants’ experience with the intervention and perceptions of survivorship care overall (Supplementary Material). Interviews comprised open-ended questions. Topics included the usefulness of SCPs, the monitoring and self-management of healthy behaviors, lifestyle support from the study team, preferences for sharing health data, and suggestions for improvement. Specific questions about the POSTHOC app and SCPs were asked depending on the arm to which the participant was randomized. Interviews were transcribed using NVivo Version 15 (Lumivero, Denver, CO) and reviewed for accuracy by research staff. Transcripts were managed and coded using NVivo. Transcripts were not returned to participants for review.

Data Analysis

The data were analyzed using a qualitative descriptive approach [23]. Thematic analysis [24] was conducted, focusing on survivors’ experiences with the SCP, the POSTHOC app, and the role both played in facilitating lifestyle modifications post-cancer treatment. Two researchers (SJ; MSR, female, Bachelor’s in Nursing student) independently read the interview transcripts before coding began to familiarize themselves with the content. Subsequently, initial codes and patterns in the data were discussed among the research team (SJ, MSR, and AK). Deductive and inductive codes were compiled in an initial codebook. Main themes and subthemes were refined iteratively to develop the final codebook, consisting of relevant quotes, with discrepancies resolved through discussion until an agreement was reached.

Following thematic coding, interview responses were systematically categorized into structured variables for quantitative and mixed methods analysis [25,26]. Interview transcripts were reviewed by two researchers (SJ, MSR), who categorized participants’ responses into nominal (e.g., yes/no/maybe) and ordinal (e.g., every day/sometimes/rarely/never) variables to generate visual summaries. For instance, for questions such as, “Would it be useful for friends, family, and caregivers to have access to this data?” participants tended to respond positively (categorized as “yes”), negatively (categorized as “no”) or in a more nuanced way (categorized as “maybe”). This process of quantifying qualitative data allowed us to visualize the distribution of responses, while the qualitative analysis retained the depth and nuance of participants’ perspectives [27].

Results

Participant Demographics

Among the 28 participants who completed an exit interview (n=19 POSTHOC group, n=9 control group), the majority were White (n=25, 89.3%) and female (n=22, 78.6%; Table 1). Participants were on average 61.9 years old (SD=12.4). The most common cancer types included breast (n=16, 57.1%) and gynecological (n=5, 17.9%), and the most frequent treatments were chemotherapy (n=27, 92.1%) and surgery (n=22, 78.6%).

Table 1.

Demographic and clinical characteristics of interviewed study participants

	All Participants (n=28)	POSTHOC group (n=19)	Control group (n=9)
	Mean (SD) or number (%)
Age (years)	61.9±12.4	63.8±10.9	58.1±15.0
Sex
Female	22 (78.6%)	16 (84.2%)	6 (66.7%)
Male	6 (21.4%)	3 (15.8%)	3 (33.3%)
Race and Ethnicity
Black/African American	3 (10.7%)	2 (10.5%)	1 (11.1%)
White	25 (89.3%)	17 (89.5%)	8 (88.9%)
Non-Hispanic	28 (100%)
Body Mass Index (kg/m2)	28.6±7.4	30.3±8.3	25.2±4.6
Cancer Type
Breast	16 (57.1%)	11 (57.9%)	5 (55.6%)
Colorectal	2 (7.1%)	2 (10.5%)	0 (0.0%)
Gynecological	5 (17.9%)	4 (21.1%)	1 (11.1%)
Head and Neck	3 (10.7%)	0 (0.0%)	3 (33.3%)
Prostate	2 (7.1%)	2 (10.5%)	0 (0.0%)
Type of Treatment
Chemotherapy	27 (92.1%)	10 (52.6%)	5 (55.6%)
Radiation	14 (50.0%)	18 (94.7%)	4 (44.4%)
Surgery	22 (78.6%)	18 (94.7%)	8 (88.9%)

Interviews lasted between 13 and 31 minutes. Themes that emerged during the interviews are described in detail in the following sections: (1) usefulness of SCPs, (2) monitoring of lifestyle behaviors and symptoms, (3) lifestyle support, (4) digital health, (5) self-management and independence, and (6) study support and design (Table 2). Participants’ perceptions on SCPs were shaped by their group assignment. As such, participant quotes in Table 2 are labeled by group (intervention or control).

Table 2.

Quotes from thematic analysis

Theme		Definition	Illustrative Quotes
Usefulness of Survivorship Care Plans		The implementation and engagement with Survivorship Care Plans by patients following cancer treatment, including the extent, duration, and manner of use.	“It was interesting to look at. It didn’t change a whole lot throughout, but it’s a good reminder, and it encourages you a bit more. If you see it, it’s like, ‘Okay, I really need to be doing this.’ So, I think in that way, it’s helpful.” —PST41, Intervention, Female, 62 years old “I think it’s useful because some people are more readers. It does have a lot of very valuable information in there. There are some people that just like to read everything, and they’ll gather a lot of information. But to have an app on your phone that you could just touch it, you’ve got it with you all the time, I think people would use it more.” —PST32, Control, Female, 61 years old “[I will use it] probably less [over time]. I think the more distance between the incidence and my recovery I get…you kind of want to get these things put out of your mind.” —PST39, Control, Male, 64 years old
Monitoring Lifestyle Behaviors and Symptoms	Tracking Physical Activity	The use of wearable devices to monitor metrics such as physical activity as part of health behavior tracking during cancer survivorship.	“At first, I was monitoring how much I was doing. But then, as I got stronger and stronger over the course of a couple of months, I was able to see how many steps I was doing and if I should probably be getting more exercise or not.” —PST23, Control, Female, 21 years old “[The study] definitely helped me think a little bit more about physical activity. I think it got me thinking a little bit more about my resting heart rate. I gave up caffeine for a while because I was trying to see if I could improve that.” —PST35, Intervention, Female, 41 years old “I think [the Fitbit] was helping me be more active and more aware of how much activity I was doing.” —PST35, Intervention, Female, 41 years old “I loved having the Fitbit to give me feedback. I understood a lot more about my sleep. And then when it got better, I could visually see it.” —PST47, Intervention, Female, 75 years old
	Tracking Nutrition	The use of the POSTHOC application’s nutrition diary log to monitor dietary intake and related behaviors as part of health behavior tracking during cancer survivorship.	“I think [the app] is very basic. Like when you’re filling out the nutritional part, I feel like it was just kind of generalized. I don’t even know how to explain that.” —PST14, Intervention, Female, 54 years old “Whereas remembering to log my food and my water was more like a task for me.” —PST05, Intervention, Female, 58 years old “Good because when you went on it, you were like, I did do this, and I did eat that. It showed you, almost like journaling. But I don’t like journaling because I always forget.” —PST17, Intervention, Female, 70 years old
	Tracking Symptoms	The use of digital tools or questionnaires to regularly record and monitor health indicators such as fatigue and pain, enabling ongoing assessment and self-management during cancer survivorship.	“Especially with keeping track of how things are changing and improving. For example, the base of my feet are very rough and hard, and it was good to see how that was getting better. Monitoring those small things that were affected by treatment that you originally did not pay attention to.” —PST45, Intervention, Female, 63 years old “I liked [the study] because it helped me keep track of a lot of my symptoms that maybe I didn’t even realize I was having and if they were getting worse or better over time. It just overall helped me keep track.” —PST23, Control, Female, 21 years old “The app is pretty simple and having all the several things displayed, the food, the exercise, the mood, and the symptoms. I liked having all of that. Tracking it helped me see each day what I was doing right on all those things and the symptoms, it was nice to see that how many times toward the end I was getting none.” — PST44, Intervention, Female, 70 years old
Lifestyle Support	Physical Activity	Healthcare guidance and resources aimed at encouraging and facilitating the resumption or enhancement of physical activity following cancer treatment, often supplemented by feedback from activity-tracking tools.	“I refer to the watch often, and it is an incentive and a guide, because I also know that when I go to my PA [physician assistant] or provider, I’m going to pull it up and say, ’Okay, this is where I’m at. This is what I’m doing. This is my goal.’ And the history is there.” — PST13, Intervention, Male, 75 years old I think it gave me more awareness of things. It might not have driven me to increased activity, but it might have more ensured that the activity existed as opposed to not.” —PST39, Control, Male, 64 years old
	Nutrition	The provision of information, guidance, and resources specifically from the POSTHOC application or study team to help cancer survivors maintain adequate nutrition and adopt sustainable, health-promoting dietary habits after treatment. This includes support delivered through app features, study communications, or research staff outreach aimed at empowering participants to make informed food-related decisions during survivorship.	“[The app] makes you think. You can even go two or three days and not realize it has passed, whereas this makes you think ‘Today you have to do this’. You need to give yourself a full boost and do stuff, and then also with the food, you realize, ‘Oh, I didn’t eat that.’ and ‘Well, yesterday I ate better than today.’ I’m reporting it to somebody. It does make you think.” — PST45, Intervention, Female, 63 years old “[The app] makes you aware because you’re looking at it, like your water intake or your steps. It’s in black and white in front of you, it’s a lot harder to ignore.” —PST41, Intervention, Female, 62 years old “I think that this [study] really helped make the transition easier, because I was able to count my steps and recording what I ate made me eat better. I think it did, because I eat pretty well now, because I only eat from home.” —PST49, Intervention, Female, 77 years old
Digital Health	App Suggestions	Recommendations for the design and improvement of digital health applications, focusing on functionality, usability, and features such as personalized symptom tracking.	“If you were teamed up with other survivors, maybe as a small group you could kind of encourage one another, like if you were walking. That would be useful.” —PST15, Control, Female, 60 years old “Maybe if you could add symptoms that are personalized to the person because some people might have different ones than others.” —PST23, Control, Female, 21 years old “I think having a little bit more education on what the categories entail, and then also having a wide variety of categories would be a little bit more helpful.” —PST47, Intervention, Female, 75 years old
	Sharing Data	The transfer or exchange of symptom and activity information—collected through the POSTHOC application or connected digital health tools—with healthcare providers, caregivers, or peers. This includes features such as syncing with the electronic health record to facilitate care coordination, enhance clinical communication, and support the patient’s well-being during survivorship.	“For others in the family to see [data from the app], they’re also part of this process. They have to accept that this person has cancer, and yes, they may have had radiation, but that’s not going to kill all the cells, it’s just going to knock them back. And therefore, we need to be part of the support program, and if they can see some of that data, then it’s there.” —PST13, Intervention, Male, 75 years old “I don’t think the [providers] have time to look through my stuff, quite honestly. Not that they wouldn’t.” —PST47, Intervention, Female, 75 years old “I think especially for caretakers, I think it would be helpful.” —PST41, Intervention, Female, 62 years old “No, I don’t think I would like that. That might be too much accountability. Too much. Yeah, no, I don’t think I would like that.” —PST48, Intervention, Female, 48 years old
Self-Management and Independence		The active role of individuals in monitoring and managing their health post-treatment, supported by digital tracking tools within the POSTHOC application. This includes enhancing self-awareness, setting personal health goals, and tracking progress toward recovery milestones.	“What I really liked was the accountability because I felt like I had a big brother sitting on my shoulder, and it just made me do what I should do. Without it, I may have just laid there and moaned.” —PST49, Intervention, Female, 77 years old “I had a tendency to keep a lot of it to myself because I’m the strong one in the family, and my husband’s not. So, I think there was a lot of stuff he didn’t understand, and I just didn’t share. Lately, I’ve been thinking I should have shared more, because people think when you’re finished with your cancer treatment, it’s like turning the light switch back on. But it is not, it’s another two months to a year to get that light switch back to as bright as it was. So I wish I would have shared that a little bit more, but that’s okay. We’re doing great. I’ve got a big support team.” —PST36, Intervention, Female, 70 years old “It brings back to the surface things that we should be thinking about, because we too often, in this world that is so hectic and crazy, get into routines, and in that process we forget about taking care of ourselves and others.” —PST13, Intervention, Male, 75 years old
Study Support and Design		The extent to which participants receive and perceive guidance, follow-up, and assistance from the POSTHOC study team regarding lifestyle behaviors and overall well-being after cancer treatment.	“I love the fact that someone was partnering with me and throughout this survivorship journey. I do wish that once the app is really up and running, that it’ll be easier to use and provide more helpful things.” —PST08, Control, Female, 55 years old “I’d say the transition was made easier a whole lot by having POSTHOC. I am kind of determined, and I feel better. I feel happier than I did. I just don’ get down like I did before.” —PST44, Intervention, Female, 70 years old “I really enjoyed this study. I think I got a lot out of it. It just made me more mindful of everything.” —PST49, Intervention, Female, 77 years old

Note: PST is a study-specific code for providing participants with unique identifiers.

Usefulness of SCPs

More than half of the participants (67.9%) were familiar with what an SCP is, while about one third (32.1%) did not recognize the term. Regarding how frequently the participants viewed their paper or digital SCP, there was a large range from rarely to every day (Fig. 1A).

Fig. 1.

Perceptions of the Survivorship Care Plan

Interviews revealed mixed attitudes among participants toward the usefulness of the SCP. About half (13/28, 46.4%) found the SCP useful, while a quarter of participants (7/28, 25.0%) did not find it useful (Fig. 1B). Half of the participants (50.7%) believed that the SCP will be more useful to them in the future (Fig. 1C), though some (10/28, 35.7%) indicated that they plan to use the SCP less in the future. Participants reported various reasons for less SCP usage (Table 2); some expressed a desire to move on, while others felt it had become less relevant over time. Furthermore, some participants stated they had no health issues post-treatment to warrant the use of an SCP, and one participant noted that they had created their own version.

Monitoring Lifestyle Behaviors and Symptoms

In general, participants found POSTHOC features, such as the daily step count, food log, and symptom log, particularly useful, as they encouraged them to pay closer attention to their physical symptoms and lifestyle behaviors (Table 2). Specifically, participants valued using Fitbit to track their physical activity, reporting that the step count data motivated them to be more active. Some noted that they already had another wearable device, which they were more comfortable with, and wished it could have been used with POSTHOC instead of Fitbit. Regarding the nutrition log, participants reported being more mindful of their eating habits when asked to record their food intake. One participant compared the diet log to journaling, highlighting its usefulness for monitoring foods consumed across various food groups.

Furthermore, the ability to track symptoms in the app was useful for participants to refer to and observe changes over time. While some participants had few or no symptoms to report post-cancer treatment, many considered the symptom-tracking feature valuable for self-management and having a record of their daily symptoms. For example, one participant shared that noticing improvements in symptoms, such as the callouses on their feet getting better, encouraged them to pay attention to symptom changes they had previously overlooked. Others noted they would continue monitoring symptoms, but less intently, as they felt non-symptomatic.

Lifestyle Support

Many participants noted that integrating Fitbit with the digital SCP was a major facilitator in achieving their lifestyle goals. For example, one participant described how the step count function acted as both a guide and an incentive to increase physical activity, adding that they shared this logged data with their healthcare provider as a record of their activity goals and progress.

Participants reported that monitoring their food intake and categorizing their diet through the app increased their awareness of eating habits, supported weight management goals, and encouraged healthier food choices. Most noted that they plan to continue monitoring their eating habits in the long term. Some participants reported greater understanding of appropriate food servings due to the allotted servings in the mobile food log, which enabled them to be more cognizant of their dietary choices. For instance, one participant noted limiting alcohol consumption to once a week per the recommendations provided in POSTHOC. Through tailored physical activity and nutrition recommendations, participants described increased awareness of their lifestyle habits and a sense of commitment to healthier choices.

Digital Health

This theme reflects the digital nature of the POSTHOC app, such as other mobile applications participants used during the study, the features they would like incorporated into future digital SCPs, and their preferences for sharing health data. Over half of the participants reported not using other health-related or cancer-related applications. Conversely, some mentioned using apps such as Apple Fitness, Apple Health, Google Fit, Noom, Under Armor, Fooducate, MyFitnessPal, FatSecret, and YouTube.

One frequently suggested feature for a digital SCP app was a community-building platform that would enable cancer survivors to connect and form support groups. Participants also requested the ability to customize symptoms in their symptom log to better reflect their needs, as well as more specific food categories in the nutrition log. One participant noted that visual representations of their physical activity and sleep data would be helpful, particularly for visualizing trends. Implementing reminder notifications to promote behaviors such as physical activity or water intake was also suggested.

Regarding sharing health data, 20 (71.4%) expressed that they would find it helpful for their care team to access diet, Fitbit activity, and symptom data stored in the POSTHOC app (Fig. 2A). In regard to sharing the data with friends, family, and caregivers, 21 participants (75.0%) indicated they would find it beneficial to share this information with others (Fig. 2B). Nearly everyone (87.5%) who was asked about their preference for sharing logged data with the Electronic Health Record (EHR) noted they would find it helpful.

Fig. 2.

Preferences for sharing data

Self-Management and Independence

Out of 28 participants, 24 (85.7%) indicated that they will continue to monitor their symptoms (Fig. 3). Three (10.7%) stated that they do not intend to continue monitoring; one of these individuals reported no post-treatment symptoms. Overall, participants from both groups reported that the study instilled an increased sense of awareness of post-treatment symptoms and healthy lifestyle behaviors. The ability to view their physical activity, sleep, and nutrition data through Fitbit and POSTHOC motivated participants in the intervention group especially to be more mindful. Participants in the study reported various goals, including regaining strength, being more active, losing weight, improving sleep, drinking more water, changing eating habits, and returning to “normal.” Regardless of whether participants were able to fulfill their goals, many noted that the heightened sense of awareness had a positive impact on their lives post-cancer treatment.

Fig. 3.

Preferences for post-treatment symptom monitoring

Study Support and Design

The role of the POSTHOC study team in providing guidance, follow-up, and support related to lifestyle behaviors and overall well-being emerged as a key aspect of participants’ experience (Table 2).

Participants described the study experience as a partnership, noting that regular check-ins from a designated individual, in this case, the study coordinator, provided them with someone to lean on during the transition to long-term survivorship and helped them establish healthier habits. Respondents in both groups reported feeling supported throughout the study, whether in setting health goals, troubleshooting technical difficulties with the app, or having someone available to talk to. Feedback from study staff encouraged participants to be more mindful of their behaviors.

Additionally, participants had feedback regarding logistics to guide follow-up studies. Most respondents indicated they would be open to physical assessments if scheduled with existing appointments or conducted at medical centers near them. Some noted that additional compensation for their time would be beneficial. A few participants expressed discomfort with magnetic resonance imaging (MRI) and blood draws. When asked if three months was a good length for a study, nearly all participants felt that it was. One participant mentioned that six months would have been more helpful in tracking changes over an extended period of time.

Discussion

This analysis used open-ended semi-structured qualitative interviews to capture the multifaceted value of a mobile SCP app and SCPs more generally. The digital features of the POSTHOC app facilitated self-monitoring of health-promoting behaviors. Participants also valued the potential to share data with both their clinical care team and personal support networks. Suggested features to enhance the app focused on opportunities for community engagement, greater personalization, and visual representations of their data in the app, reflecting the desire for personalized tools that enhance social connection. Collectively, this analysis provides novel, patient-informed insights into the design and delivery of a mobile SCP app. These findings have implications for the development of future engaging, accessible, and patient-centered long-term survivorship care tools.

The intent of SCPs is to support survivors in managing health needs post-cancer treatment, yet prior evidence suggests that traditional SCPs may not consistently meet the expectations of cancer survivors [28,29]. We observed varied responses toward engagement with and usefulness of SCPs, which may stem from unclear communication during SCP provision, as reported by Hua et al. [30]. Among those who understood that our survivorship program was focused on the SCP, nearly half of the participants found the SCP useful and believed it would be more useful to them in the future. Thus, providers should ensure explicit and intentional delivery of SCPs, taking the time to explain its purpose and contents. While traditional SCPs can be helpful when clearly communicated [31], participants in the POSTHOC arm noted benefits that are achievable only with a digital SCP, such as sharing symptom and physical activity data with providers, friends, and/or family. Thus, the combination of clinician-led engagement and a digital SCP may offer a more interactive and customizable approach to survivorship care [32].

Participants reported that tracking lifestyle behaviors using POSTHOC, including physical activity and nutrition, increased perceived awareness of healthy behaviors and motivated positive lifestyle changes. These findings align with evidence from other digital interventions, including mHealth apps, which have similarly been shown to support behavior change and increase self-management [33–35]. Our results are consistent with prior research suggesting that multi-component approaches are generally more effective at improving health outcomes [36]. This highlights the need for future survivorship interventions, including SCPs, to be multi-dimensional, addressing both clinical and psychosocial needs.

The general positive attitudes toward data sharing in our sample, especially with their clinical care team, contrast with prior studies that report privacy concerns as a significant barrier to sharing patient health data [37–39]. The willingness of participants to share data aligns with the notion of the “privacy–personalization paradox” as described in Guo et al. [40]. Our results suggest that for many post-treatment cancer survivors, the benefits of sharing data with healthcare providers, such as personalized and directed care, may outweigh privacy concerns, particularly when trust is established between the app provider and patient.

Although about half of the participants did not use other health-related apps, their feedback on potential features to enhance the POSTHOC app suggests that they are open to digital tools when designed to meet their specific needs. One frequent suggestion was the ability to connect with other survivors through a community platform or peer-support feature in the app. Social support and self-efficacy have been significantly associated with emotional well-being in cancer survivors [41]. Incorporating a social component into future digital interventions may address the psychosocial needs of long-term cancer survivors as well as increase engagement with survivorship tools such as mobile SCPs. Participant suggestions for symptom and food customization support the need for personalized digital tools to enhance the user experience and promote self-management. These findings align with prior work by Stubbins et al. [42], who developed a survivorship smartphone app, MOCHA, with physical activity and nutrition tracking capabilities. MOCHA demonstrated improved goal adherence and patient engagement with health practitioners through real-time feedback and accountability from clinical providers.

This work has research implications. The transition from paper-based to mobile SCPs represents a critical first step in modernizing survivorship care. As artificial intelligence (AI) capabilities continue to grow, the integration of AI is a promising next step for enhancing the effectiveness of SCPs. AI-driven systems could analyze patient data to detect patterns and flag concerning trends. Recent data have shown the feasibility and preliminary efficacy of AI-based SCPs in improving patient activation, self-efficacy, and quality of life [32]. This addition could shift static SCPs into a more adaptive and responsive tool that improves follow-up care for post-treatment cancer survivors.

This analysis has clinical significance. As patients transition to long-term survivorship, structured medical support declines. Participants in our study reported that regular check-ins from a designated individual provided them with someone who could assist them through the transition to long-term survivorship and help establish healthier habits. This highlights the need for additional patient support in post-treatment survivorship care. Behavior-tracking tools incorporated into POSTHOC, such as Fitbit step count data, food logs, and symptom checklists, encouraged positive behavior changes. These tools motivate patients, enhance personalized care, and foster more collaborative relationships between patients and providers. To maximize the potential of mHealth, tools should be patient-centered, prioritizing usability, personalization, and individual preferences. Furthermore, participants emphasized the importance of accessibility and relevance of health data in the app, suggesting that mobile SCP platforms may help address limitations of traditional SCPs by allowing information to be updated and personalized to patients’ evolving needs. With shared access of health data recorded into a mobile SCP to the EHR, medical providers can monitor progress between visits, recognize early warning signs of late effects of treatment, and adjust care plans if necessary. mHealth tools have the capability to transform survivorship care, reduce the sense of isolation, and improve the connection between patients and their care team.

This mixed-methods analysis allowed us to share the voices of post-treatment cancer survivors from an interpretive perspective, in addition to visualizing their responses graphically. However, we note that there are limitations in our approach. As our findings are based on a small sample size with limited racial diversity, the generalizability of the research may be limited. Also, only those with access to a smartphone were eligible for our trial, and only those interested in participating in a trial testing a beta version of a mobile SCP enrolled; therefore, these results are biased towards people with moderate to high digital literacy. This likely skews data-sharing results, particularly towards people who may have more trust in technology. Furthermore, this study is inherently susceptible to social desirability bias. Although we encouraged honest feedback during the interviews, participants may have been more inclined to share positive experiences than negative ones. Biases may also have emerged while coding due to the personal experiences and backgrounds of the researchers. To minimize bias, two researchers were involved in the coding and interpretation of data to check for consistency and address any discrepancies. Also, participants in the intervention vs. control groups had very different experiences with the SCP, which has both strengths and limitations in our analysis. The control group received a “lite” version of POSTHOC and therefore did not have access to the mobile SCP; they were provided with a paper-based or digital SCP via email, which they discussed with a clinician-researcher. Participants in the control group also completed symptom questionnaires and diet logs, used a Fitbit activity tracker during baseline, week 6, and week 12, and had biweekly check-ins with the study team, increasing their attention to symptoms and health behaviors more than in a usual care condition. Thus, while the quantitative effects of the study were designed to be specific to the mobile SCP [18,19], perspectives on SCPs from both the intervention and control groups were relevant to our qualitative analysis.

Conclusion

Post-treatment cancer survivors found the mobile SCP application beneficial for health-promoting behaviors and enhancing patient self-management. Participant suggestions for digital survivorship tools emphasize the importance of customization and multi-dimensional interactive features. Future research should explore the integration of digital SCPs with the EHR and further investigate features that facilitate increased engagement with SCPs.

Data availability statement

The data that support the findings of this study are available upon reasonable request to the corresponding author and proper Data Use Agreements in place between the University of Maryland, Baltimore, and the recipient institution.