Identifying common experiences amongst sarcoma patients. The first phase in developing a sarcoma-specific patient-reported outcome measure


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Ana Martins1,Lesley Storey2,Mary Wells3,Lorna Fern4,Lindsey Bennister5,Craig Gerrand6,Maria Onasanya7,Julie Woodford8,Rachael Windsor1,Jeremy S Whelan1,Rachel M Taylor1
1University College London Hospitals NHS Trust,2Queens University,3University of Stirling,4,5Sarcoma UK,6Newcastle Upon Tyne Hospitals NHS Foundation Trust,7Patient Representative,8Royal National Orthopaedic Hospital

Abstract

Background

Introducing patient-reported outcome measures (PROMs) into clinical practice is known to improve patient-clinician communication, patient experience and outcomes. While there are many generic cancer PROMs there are none developed for sarcoma so these may not capture issues that are tumour-specific. We undertook an in-depth study to describe the experiences of being diagnosed, treated and living with sarcoma to inform the development of a PROM.

Method

Participants across the UK were recruited by healthcare teams in Trusts or through the charities, Sarcoma UK & Bone Cancer Research Trust. Due to the heterogeneity of sarcoma, recruitment considered biometric factors (e.g. age), location of care, sarcoma type (bone, soft tissue, gastrointestinal stromal tumours (GIST)); treatment intent; treatment type; time since diagnosis; and other factors (e.g. clinical trial participation). Patients’ experience was shared in semi-structured interviews and focus groups, which were transcribed and analysed using Framework analysis.

Results

A total of 120 patients participated (50% male; aged 13-82 years old; with soft tissue (62%), bone (28%) and GIST (10%)). Five overarching themes were identified: impact of the diagnostic timeline (e.g. time to diagnosis; pathways; professionals’ roles), physical well-being (e.g. treatment side effects; mobility restrictions), emotional well-being (e.g. feelings of isolation; fear of recurrence; support available), social well-being (e.g. impact on interpersonal relationships; sexual identity) and financial well-being (e.g. support needed; challenges). The analysis identified the core experiences common to all sarcoma patients and the variances in reported experience depending on factors such as age and sarcoma type.

Conclusion

In the first step towards developing a sarcoma-specific PROM we have identified the key defining characteristics of patients’ sarcoma experiences. While some were similar to experience in other cancer types, many were unique to this population. These will form the basis for content to be included in the PROM.