Patient Experiences With a Symptom Monitoring and Self-Referral Program for Specialty Palliative Care After Lung Cancer Diagnosis: Qualitative Study
Background Palliative care improves patients’ health-related quality of life (HRQoL) by delivering specialty-level management for cancer symptoms. Digital symptom monitoring programs (SMPs) improve patients’ HRQoL through early symptom identification during cancer care. Through complementary approaches, SMPs and palliative care align with symptom management theory by linking the patient-reported symptom experience with clinician recommendations for symptom management to improve health outcomes for patients with serious illness. While both SMPs and palliative care reduce health care use and improve survival through detection and treatment of cancer symptoms, few studies have attempted to integrate palliative care into SMPs for cancer symptom management. Objective This study aimed to assess patients’ perspectives about the feasibility and acceptability of an SMP with a prompted palliative care self-referral option (Symptom Monitoring Program Linked to Electronic Referrals [SyMPLER]) via a mobile health (mHealth) app during lung cancer treatment. Methods This is a single-institution qualitative study of patients newly diagnosed with lung cancer who were enrolled in a single-arm feasibility pilot of an mHealth app that facilitates on-demand reporting of cancer-related symptoms and prompts patients to self-refer to palliative care for symptom management. Interview participants were purposively sampled based on high (≥3 uses) vs low (0-2 uses) engagement with the app during the first 3 months of access to the SMP. Questions focused on program feasibility and acceptability as well as perceptions of the 5 components of the SMP intervention (introduction to palliative care, reminders, symptom reporting, palliative care self-referral, and oncology team callback). Interviews were conducted from May 2024 to May 2025 by telephone, recorded, transcribed, and analyzed using thematic analysis. Results A total of 31 patients were interviewed; 21 had high and 10 had low app engagement. Participants were mostly White (n=29, 93.5%), female (n=21, 67.7%), and aged 60 years or older (n=19, 61.3%). In high and low engagement groups, participants voiced willingness and ability to report symptoms through the app and self-refer to palliative care if needed for symptom management. Feasibility barriers differed by group, with high-engagement participants noting forgetting to use the app for symptom reporting, while low-engagement participants cited low symptom burden, technology concerns, and time constraints as reasons for limited use of the SMP. Participants described uncertainty about when or why to request palliative care as a major barrier to self-referral. Conclusions Participants’ perspectives on the feasibility and acceptability of SyMPLER differed by their level of engagement with the SMP app. Participants in both groups voiced acceptance of the option to self-refer to palliative care, although feasibility was limited by low uptake of palliative care self-referral. Participants suggested improvements to educational outreach, digital accessibility, customizable reminders, and recommendations for help-seeking behaviors based on symptom scoring thresholds to improve patient engagement with iterations of this SMP intervention.
Authors
- Carolyn Jean Presley (ORCID: https://orcid.org/0000-0002-2607-5639)
- Julia L. Agne (ORCID: https://orcid.org/0000-0002-9967-0818)
- Tasleem J. Padamsee (ORCID: https://orcid.org/0000-0001-6644-8084)
- Alice A. Gaughan (ORCID: https://orcid.org/0000-0001-9109-3473)
- Ann Scheck McAlearney (ORCID: https://orcid.org/0000-0001-9107-5419)
- Jessica S. Merlin (ORCID: https://orcid.org/0000-0003-3207-4875)
- Madison M. Grogan (ORCID: https://orcid.org/0009-0000-1517-4829)
- Jack H. Stevens (ORCID: https://orcid.org/0000-0001-6586-1918)
- Robert Michael Cronin (ORCID: https://orcid.org/0000-0003-1916-6521)
- Laura J. Rush (ORCID: https://orcid.org/0000-0003-3859-6885)
- Jennifer L. Eramo
- A Ba
Publication Details
- Journal
- JMIR Formative Research
- Published
- 2026-09-24
- DOI
- https://doi.org/10.2196/95948
- Primary Topic
- Cancer survivorship and care
- Type
- article
- Field-Weighted Citation Impact
- 0.00