Poster Presentation Clinical Oncology Society of Australia Annual Scientific Meeting 2024

Modifying a supportive care needs screening tool for people with brain tumour (#527)

Mona Faris 1 , Haryana Dhillon 1 , Thomas Carlick 1 , Sharon He 1 , Hannah Banks 1 , Megan Jeon 1 , Rachel Campbell 1 , Raymond Chan 2 , Georgia Halkett 3 , Dianne Legge 4 5 , Robyn Leonard 6 , Annie Miller 7 , Tamara Ownsworth 8 , Kerryn Pike 9 10 , Joanne Shaw 1
  1. The University of Sydney, Camperdown, NSW, Australia
  2. Caring Futures Institute, College of Nursing and Health Sciences, Flinders University, Bedford Park, South Australia, Australia
  3. Curtin School of Nursing/Curtin Health Innovation Research institute (CHIRI), Curtin University, Perth, Western Australia, Australia
  4. Olivia Newton-John Cancer and Wellness Centre, Austin Hospital, Heidelberg, Victoria, Australia
  5. Curtin School of Nursing/ Curtin Health Innovation Research Institute, Faculty of Health Sciences, Curtin University, Bentley, Western Australia, Australia
  6. Brain Cancer Biobanking Australia, NHMRC Clinical Trials Centre, University of Sydney, Sydney, New South Wales, Australia
  7. Community advisory group, Psycho-Oncology Cooperative Research Group, The University of Sydney, Camperdown, New South Wales, Australia
  8. School of Applied Psychology & Menzies Health Institute of Queensland, Griffith University, Brisbane, Queensland, Australia
  9. School of Applied Psychology & Griffith Centre for Mental Health, Griffith University, Brisbane, Queensland, Australia
  10. School of Psychology & Public Health & John Richards Centre for Rural Ageing Research, La Trobe University, Melbourne, Victoria, Australia

Introduction

People with brain tumour (PwBT) experience a range of symptoms and needs. As part of the Brain cancer Rehabilitation, Assessment, Interventions for survivorship Needs (BRAINS) program, we are implementing a clinical pathway that incorporates screening and management of unmet needs in PwBT using an online portal (ADAPT BRAINS). The 9-item Supportive Care Need Survey (SCNS-ST9) has been used to identify unmet needs of adults with cancer, although its acceptability among PwBT has not yet been assessed.

Aim

To assess the face and content validity of the SCNS-ST9 for PwBT.

Methods

Semi-structured, cognitive walkthrough interviews were conducted with PwBT, their caregivers, and healthcare professionals (HCPs) who treat them. Participants reviewed the SCNS-ST9 and discussed the acceptability, relevance, and comprehension of the content and language. Interviews were analysed using interpretive description.

Results

We interviewed fourteen PwBT, four caregivers, and seven HCPs. One item was easy to understand and relevant. Suggestions to the wording for eight out of the nine other items included: a) using language that reflects a brain tumour diagnosis (e.g., brain tumours ‘progress’ not ‘spread’); b) modifying language perceived to be sensitive (e.g., ‘changes in sexual relationships’ amended to ‘changes in your relationships’); and, c) simplifying language (e.g., ‘as soon as feasible’ was changed to ‘as soon as possible’). Feedback suggested modifications to the response options were needed as they were difficult to understand and apply. Participants recommended simplifying the instrument instructions by using plain language and being concise.

Conclusions

It is essential that instrument instructions, items, and response options for patient measures are easily understood. Based on our results, the instructions, items, and response options for the SCNS-ST9 were revised and implemented in the ADAPT BRAINS portal. Simplifying language will improve accessibility of screening for PwBT to identify unmet needs and inform the provision of appropriate supportive care.