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Digital Patient-Controlled Follow-Up in Palliative Cancer Care: Protocol for a Mixed Methods Feasibility Study
Erik Torbjørn Løhre1,2,3, Morten Thronæs1,2,3, Hilde Hjelmeland Ahmedzai1
1Centre for Crisis Psychology, Faculty of Psychology, University of Bergen, Bergen, Norway.
Background:
Patient-centered care, emphasizing autonomy and shared decision-making, is essential in palliative cancer care. The increasing prevalence of cancer requires optimized health care use, and given patients' preference for home-based care, traditional time-based follow-up appointments may not adequately address their needs. We have developed a digital patient-controlled follow-up intervention at the acute palliative care unit in Norway. The digital app is integrated into the existing national health service platform, MyHealth, and facilitates symptom monitoring, self-management support, and patient-controlled access to palliative care services.
Objective:
This pilot study will evaluate the feasibility and acceptability of the intervention and study procedures prior to examining the intervention's effect in a future randomized controlled trial.
Methods:
Applying a mixed methods design, we plan to recruit 20 patients to participate in a 6-week intervention period, during which they will complete weekly electronic versions of the revised Edmonton Symptom Assessment System to monitor symptom burden and enable tailored follow-up. Participants will have access to a dedicated website providing self-management guidance and will also be able to electronically book appointments with the palliative care team. Health-related quality of life will be assessed at baseline and after the intervention using the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire C-15-Palliative. Following the intervention, patients will complete a satisfaction questionnaire. Semistructured interviews with patients and family carers will explore experiences, benefits, and barriers, while a focus group with health care professionals will assess feasibility from a clinical perspective. Quantitative and qualitative data will be analyzed separately before being integrated to identify convergence, complementarity, or divergence.
Results:
Findings from this pilot study will inform the design and feasibility of a future RCT. The recruitment of patients will start in October 2026, and the recruitment period and the intervention will last until April 2027 or until 20 patients have been recruited. We subsequently anticipate completing data analyses, manuscript writing, and submission of the stage 2 manuscript by October 2027. In January 2026, we received funding for the 4-year project (including a randomized controlled trial). This project is funded by the Dam Foundation (grant research [2025] #SDAM_FOR701622), supported by the Norwegian Cancer Society.
Conclusions:
Digital, need-based follow-up may offer a sustainable, patient-centered model for palliative cancer care. The findings of this feasibility study will inform the design of a randomized controlled trial to examine the effect of this intervention.
International Registered Report Identifier (Irrid):
PRR1-10.2196/92046.
