Development of a sarcoma-specific patient-reported outcome measure

Aim:

  • To develop and validate a sarcoma-specific PROM and to develop a strategy for its incorporation into practice.

Summary:

Sarcomas are a rare and diverse group of cancers arising from connective tissue, including soft tissue sarcoma (STS) and bone tumours. They are characterised by considerable clinical heterogeneity in presenting symptoms, morbidity and success rates of treatment. For a significant proportion of patients with sarcoma, the physical burden of the disease and of treatment is very high and is in many cases accompanied by low expectations of survival. Subsequently poorer patient-reported outcomes (PRO) are recorded in comparison to patients with other cancer types.  Currently there are no sarcoma-specific PROMS with which to evaluate physical and psychosocial outcomes in research and clinical practice.  This is a mixed methods study based on recommended methodology for developing a PROM, comprising of three stages:

  1. Developing the PROM using literature and qualitative interviews to generate items
  2. Psychometric testing of the PROM in up to 400 patients
  3. Developing a strategy to implement the PROM into clinical practice, using workshops with patients, clinicians and other stakeholders.

Outcomes/Impact:

The benefits of using PROMS in clinical practice and research are well known. The S-PROM will be useable for needs assessment, shared decision making, symptom management, outcome assessment and quality improvement.

Principal Investigator: University College London Hospital

NMAHP Research Unit Collaborators: Professor Mary Wells

External Collaborators: Bennister L - Sarcoma UK, Fern L - National Cancer Research Institute, Gerrand C - Newcastle upon Tyne Hospitals NHS Foundation Trust, Storey L - Queens University Belfast, Whelen J - University College London Hospital, Windsor R - University College London Hospital, Woodford J - Royal National Orthopaedic Hospital.

Funder: Sarcoma UK