Why Cancer Patients Aren’t Using Digital Symptom Tracking Apps

Digital symptom monitoring has become one of the most promising advances in supportive cancer care. When patients regularly report their symptoms through electronic tools, clinicians can catch problems earlier, adjust medications sooner, and in some landmark trials, even extend survival. Yet a new study from the Netherlands reveals a sobering gap between what these tools can achieve in controlled trials and what actually happens when they are released into the messy reality of patients’ lives. An open-access symptom tracking platform designed to reach adolescents and young adults with cancer attracted only twenty users in eighteen months, and most of them barely engaged with it at all.

The study, published in Supportive Care in Cancer, evaluated OpenSYMPRO, a web application built on an existing Dutch symptom monitoring tool called SYMPRO. The original SYMPRO app required enrollment by a healthcare professional, which meant patients could only use it if their hospital participated. OpenSYMPRO removed that gatekeeping entirely: anyone starting systemic therapy such as chemotherapy, immunotherapy, hormonal therapy, or targeted treatment could self-register, complete a short intake about their diagnosis, and begin receiving weekly questionnaires based on the validated Dutch version of the Patient-Reported Outcomes Common Terminology Criteria for Adverse Events, or PRO-CTCAE. Each questionnaire took roughly five minutes and asked about symptom severity, frequency, and interference with daily life over the past week.

The technical architecture was thoughtfully designed. Computerized adaptive testing skipped follow-up questions when patients reported no symptoms, minimizing burden. Predefined alerting algorithms, based on healthcare risk thresholds and specific symptom patterns, prompted users to contact their care team when responses suggested something concerning. Symptom reports were generated across three tabs showing alert-triggering symptoms, overall scores per symptom, and item-level details, which patients were encouraged to share during consultations. Because OpenSYMPRO was deliberately not linked to hospitals, alerts were not forwarded to clinicians directly; instead, the app followed a reactive model in which patients themselves were advised to seek care when alerts appeared. Data were stored securely within the PROFILES registry, and the platform was free, accessible on all mobile devices, and supported by tutorials developed with a patient organization and a dedicated helpdesk.

None of this was enough to generate meaningful uptake. After eighteen months of open availability and six months of hospital-based promotion of the regular SYMPRO tool, just twenty participants had enrolled by logging in at least once. Eighteen came through OpenSYMPRO and two through the hospital route, and neither of the hospital-enrolled patients completed a single questionnaire. Of the full sample, seven were frequent users who completed more than two symptom questionnaires, nine completed only one or two, and four never filled out any at all. The original research plan, which aimed to compare adolescents and young adults using the open platform with older patients using the hospital-based version, had to be abandoned entirely because recruitment fell so far short of expectations.

The research team pivoted to an exploratory question: why had engagement been so low? All twenty participants were invited to give feedback through interviews or questionnaires, and nine responded, including seven within the adolescent and young adult age range and two outside it. Thematic analysis of their accounts surfaced five recurring barriers, and notably, none of them were technical. Participants generally found the platform easy to operate, and no substantial technical problems were reported. One respondent even remarked that the tech part worked well enough. The obstacles were organizational, communicative, and deeply personal.

The first barrier was study overload. Several participants described feeling inundated by invitations to join multiple research projects and digital tools during their cancer trajectory, leaving them confused about each initiative’s purpose. One participant said she was called by so many different people that she honestly did not remember who was from which study anymore. Closely related was perceived overlap: some felt that OpenSYMPRO’s questions closely resembled those from other studies, creating a sense of answering the same things repeatedly. A third theme was simply forgetting. Several participants had completely lost track of the app or no longer remembered its purpose, suggesting that digital tools fade from attention quickly when they are not anchored to routine care. One respondent, contacted for an interview, admitted having no idea what the app was about or why the researchers were calling.

The remaining barriers cut to the heart of what cancer treatment actually feels like. Many participants described the treatment period as intense and emotionally overwhelming, leaving little time or cognitive capacity for even minor additional tasks such as a five-minute questionnaire. As one put it, a lot was happening at the time and she just could not deal with anything extra. Finally, some questioned the app’s added value altogether. One noted that chemotherapy-related symptoms were too severe to forget, making a tracking tool redundant. Another said that if she did not experience a particular side effect, she did not want to be made aware that it could occur, a striking reminder that symptom education can itself become a source of anxiety. Several believed they could communicate their symptoms effectively to clinicians without any app.

These findings matter because the evidence base for digital symptom monitoring is otherwise so strong. Large randomized trials have shown that routine electronic patient-reported outcome monitoring improves health-related quality of life, reduces emergency visits, and in some analyses improves overall survival, likely because alerting algorithms enable intervention before symptoms escalate. But those successes almost always occurred within tightly integrated clinical workflows, where clinicians actively reviewed patient reports and responded to alerts. OpenSYMPRO’s open, patient-initiated model deliberately severed that connection to maximize access, particularly for young adults whose care in the Netherlands is scattered across multiple hospitals and subspecialties. The results suggest that access alone, without visible ties to the care team and clear communication of personal benefit, may be insufficient to sustain engagement, although the authors caution that their exploratory data cannot establish this causally.

The study has important limitations that shape how its lessons should be applied. The sample was very small and clinically heterogeneous, qualitative feedback came from only nine respondents, and data saturation cannot be assumed. Crucially, the researchers could only gather feedback from people who had registered; patients who encountered the tool but chose not to sign up could not be approached, meaning the data illuminate discontinuation far better than initial non-uptake. Age at diagnosis was available for nineteen of twenty participants, but age at study participation was not, complicating interpretation of life-stage effects. The authors also acknowledge that design-related barriers, such as the choice of a web application rather than a downloadable app, visibility, navigation, and the number of steps required to engage, were not systematically evaluated and cannot be excluded, particularly among those who disengaged earliest.

Even so, the recommendations that emerge are concrete and likely to resonate with anyone implementing digital health tools. The authors argue that research teams and clinicians should coordinate introductions to avoid duplicating requests, ideally harmonizing data collection within a single integrated app. Digital symptom monitoring should be woven into routine care rather than offered as a standalone extra, with healthcare professionals actively involved, as demonstrated by successful European initiatives used by thousands of patients. Passive email reminders should be replaced or supplemented by personalized strategies tied to treatment milestones and concrete clinical decisions, ideally delivered through familiar hospital systems. Flexible participation models that allow patients to pause during intensive treatment phases could respect the realities of their capacity. Whether adolescents and young adults need additional design adaptations tailored to their developmental stage remains an open question that future co-design studies will need to answer. What this study makes clear is that the hardest problems in digital oncology are not computational but human: attention, trust, timing, and the simple question every patient implicitly asks of a new tool, which is what exactly is in it for me.

Subject of Research: Real-world uptake and engagement with a digital symptom-monitoring tool among patients with cancer receiving systemic therapy

Article Title: Digital symptom monitoring in cancer care: an exploratory evaluation of low uptake and engagement

Article References: Mols, F., Hendriks, M., Bol, N., Sleeman, S., Husson, O., van Eenbergen, M., & van den Hurk, C. (2026). Digital symptom monitoring in cancer care: an exploratory evaluation of low uptake and engagement. Supportive Care in Cancer, 34(10), Article 1045. https://doi.org/10.1007/s00520-026-11297-3

Image Credits: AI Generated

DOI: 10.1007/s00520-026-11297-3

Keywords: digital symptom monitoring, patient-reported outcomes, cancer care, adolescents and young adults, eHealth, PRO-CTCAE, systemic therapy, patient engagement, implementation science, supportive care, OpenSYMPRO, health communication