Sarcomas are rare and aggressive malignancies of connective tissues that require prolonged follow-up care, often placing significant psychological and logistical strain on patients. Patient-Initiated Review (PIR) is a policy that can potentially attenuate these issues by empowering patients to self-monitor their health and book a review appointment with the clinical team only when they feel it is needed. This shift from the standard, provider-driven follow-up protocol to a more patient-focused approach encourages patients to take an active role in their recovery, potentially alleviating feelings of anxiety and loss of control while equally improving outpatient service capacity and efficiency.
However, while PIR offers promising benefits, its acceptance and perceptions among sarcoma patients, along with potential demographic variations remain underexplored. The aims of the study are therefore to (a) assess patient acceptance, perceived empowerment and practical benefits of the PIR model, (b) explore potential associations between reported outcomes and demographics, (c) understand individual patient experiences and outline potential challenges and (d) aim at providing recommendations for the integration of PIR based on patient reported outcomes. The hypothesis is that patients enrolled in PIR will demonstrate acceptance, experience enhanced psychological well-being and report logistical benefits with no significant variation with demographic factors such as age, gender or treatment stage.
The study will use a mixed-methods approach with the objective to combine quantitative surveys to measure acceptance, perceived empowerment, and practical benefits with qualitative interviews to explore patient experiences and challenges in depth. This approach will provide rich contextual data on patient experience and align with the aim to generate a comprehensive evaluation of patient experiences and attitudes towards PIR as an assessment of the policy’s impact. Another output would be possible recommendations for improving the integration of PIR based on patient reported outcomes and potentially increase the success rate of PIR implementation.