Unmet needs in people with high-grade glioma: defining criteria for stepped care intervention

Mona M Faris; Haryana M Dhillon; Rachel Campbell; Georgia K B Halkett; Annie Miller; Raymond J Chan; Helen M Haydon; Ursula M Sansom-Daly; Eng-Siew Koh; Tamara Ownsworth; Anna K Nowak; Brian Kelly; Robyn Leonard; Kerryn E Pike; Dianne M Legge; Mark B Pinkham; Meera R Agar; BRAINS Program Group; Joanne Shaw

doi:10.1093/jncics/pkae034

Unmet needs in people with high-grade glioma: defining criteria for stepped care intervention

JNCI Cancer Spectr. 2024 Jul 1;8(4):pkae034. doi: 10.1093/jncics/pkae034.

Authors

Mona M Faris¹, Haryana M Dhillon^{1

2}, Rachel Campbell¹, Georgia K B Halkett³, Annie Miller⁴, Raymond J Chan⁵, Helen M Haydon^{6

7}, Ursula M Sansom-Daly^{8

9

10}, Eng-Siew Koh^{11

12

13}, Tamara Ownsworth¹⁴, Anna K Nowak¹⁵, Brian Kelly¹⁶, Robyn Leonard¹⁷, Kerryn E Pike^{14

18

19}, Dianne M Legge^{3

20}, Mark B Pinkham^{21

22}, Meera R Agar²³; BRAINS Program Group; Joanne Shaw¹

Affiliations

¹ Psycho-Oncology Cooperative Research Group, School of Psychology, Faculty of Science, The University of Sydney, Sydney, NSW, Australia.
² Centre for Medical Psychology & Evidence-Based Decision-Making, School of Psychology, Faculty of Science, The University of Sydney, Sydney, NSW, Australia.
³ Curtin School of Nursing/Curtin Health Innovation Research Institute, Faculty of Health Sciences, Curtin University, Bentley, WA, Australia.
⁴ Community advisory group, Psycho-Oncology Cooperative Research Group, The University of Sydney, Sydney, NSW, Australia.
⁵ Caring Futures Institute, College of Nursing and Health Sciences, Flinders University, Adelaide, SA, Australia.
⁶ Centre for Online Health, The University of Queensland, Brisbane, QLD, Australia.
⁷ Centre for Health Services Research, The University of Queensland, Brisbane, QLD, Australia.
⁸ School of Clinical Medicine, UNSW Medicine and Health, University of New South Wales, Kensington, NSW, Australia.
⁹ Behavioural Sciences Unit, Kids Cancer Centre, Sydney Children's Hospital, Randwick, NSW, Australia.
¹⁰ Sydney Youth Cancer Service, Nelune Comprehensive Cancer Centre, Prince of Wales Hospital, Randwick, NSW, Australia.
¹¹ South West Sydney Clinical School, UNSW Medicine, University of New South Wales, Liverpool, NSW, Australia.
¹² Liverpool and Macarthur Cancer Therapy Centres, Liverpool, NSW, Australia.
¹³ Ingham Institute for Applied Medical Research, Liverpool, NSW, Australia.
¹⁴ School of Applied Psychology & Menzies Health Institute of Queensland, Brisbane, QLD, Australia.
¹⁵ Medical School, University of Western Australia, Crawley, WA, Australia.
¹⁶ School of Medicine and Public Health, University of Newcastle, Newcastle, NSW, Australia.
¹⁷ Brain Cancer Collective, NHMRC Clinical Trials Centre, University of Sydney, Sydney, NSW, Australia.
¹⁸ Griffith Centre for Mental Health, Griffith University, Queensland, Australia.
¹⁹ School of Psychology & Public Health and John Richards Centre for Rural Ageing Research, La Trobe University, Victoria, Australia.
²⁰ Olivia Newton-John Cancer and Wellness Centre, Austin Hospital, Heidelberg, VIC, Australia.
²¹ Division of Cancer Services, Princess Alexandra Hospital, Woolloongabba, QLD, Australia.
²² School of Medicine, University of Queensland, Brisbane, QLD, Australia.
²³ Improving Palliative, Aged and Chronic Care through Clinical Research and Translation (IMPACCT) Research Centre, Faculty of Health, University of Technology, Sydney, NSW, Australia.

Abstract

Background: We aimed to define levels of unmet supportive care needs in people with primary brain tumor and to reach expert consensus on feasibility of addressing patients' needs in clinical practice.

Methods: We conducted secondary analysis of a prospective cohort study of people diagnosed with high-grade glioma (n = 116) who completed the Supportive Care Needs Survey-Short Form during adjuvant chemoradiation therapy. Participants were allocated to 1 of 3 categories: no need ("no need" for help on all items), low need ("low need" for help on at least 1 item, but no "moderate" or "high" need), or moderate/high need (at least 1 "moderate" or "high" need indicated). Clinical capacity to respond to the proportion of patients needing to be prioritized was assessed.

Results: Overall, 13% (n = 5) were categorized as no need, 23% (n = 27) low need, and 64% (n = 74) moderate/high need. At least 1 moderate/high need was reported in the physical and daily living domain (42%) and the psychological (34%) domain. In recognition of health system capacity, the moderate/high need category was modified to distinguish between moderate need ("moderate" need indicated for at least 1 item but "high" need was not selected for any item) and high need (at least 1 "high" need indicated). Results revealed 24% (n = 28) moderate need and 40% (n = 46) high need. Those categorized as high need indicated needing assistance navigating the health system and information.

Conclusions: Using four step allocations resulted in 40% of patients indicating high need. Categories may facilitate appropriate triaging and guide stepped models of healthcare delivery.

MeSH terms

Activities of Daily Living
Adult
Aged
Brain Neoplasms* / psychology
Brain Neoplasms* / therapy
Chemoradiotherapy, Adjuvant
Feasibility Studies
Female
Glioma* / therapy
Health Services Needs and Demand*
Humans
Male
Middle Aged
Needs Assessment*
Prospective Studies
Surveys and Questionnaires

Grants and funding

Brain Cancer Rehabilitation, Assessment, Intervention of Survivor Needs