Development of a brief screening measure of unmet supportive care needs (SCNS-P&C-6) in caregivers of people with high-grade glioma

Abstract Purpose Informal caregivers of people with high grade glioma (HGG) often have high levels of unmet support needs. Routine screening for unmet needs can facilitate appropriate and timely access to supportive care. We aimed to develop a brief screening tool for HGG caregiver unmet needs, base...

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Main Authors: Jill Chen, Joanne M. Shaw, Haryana M. Dhillon, Georgia K. B. Halkett, Emma McDougall, Anna K. Nowak, Rachel Campbell, for the BRAINs Program Investigators
Format: Article
Language:English
Published: SpringerOpen 2025-01-01
Series:Journal of Patient-Reported Outcomes
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Online Access:https://doi.org/10.1186/s41687-024-00835-4
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author Jill Chen
Joanne M. Shaw
Haryana M. Dhillon
Georgia K. B. Halkett
Emma McDougall
Anna K. Nowak
Rachel Campbell
for the BRAINs Program Investigators
author_facet Jill Chen
Joanne M. Shaw
Haryana M. Dhillon
Georgia K. B. Halkett
Emma McDougall
Anna K. Nowak
Rachel Campbell
for the BRAINs Program Investigators
author_sort Jill Chen
collection DOAJ
description Abstract Purpose Informal caregivers of people with high grade glioma (HGG) often have high levels of unmet support needs. Routine screening for unmet needs can facilitate appropriate and timely access to supportive care. We aimed to develop a brief screening tool for HGG caregiver unmet needs, based on the Supportive Care Needs Survey—Partners & Caregivers (SCNS-P&C). Methods Secondary analysis was performed on responses to the SCNS-P&C from 188 HGG caregivers, who participated in the Care-IS trial. SCNS-P&C items were assessed against four criteria: factor loadings; prevalence; variation in domain score; diagnostic accuracy. Supplementary analysis was conducted at two timepoints (T1 & T2) on the final selected items to identify caregivers indicating no needs on the screening items but reported a need on the original SCNS-P&C, suggesting they would be “missed” by the screening items. Results Six items performed best against psychometric criteria, capturing two domains: Cancer impact needs and Information and communication needs. Supplementary analysis showed screening items failed to identify only 7.4% (14/188) of caregivers with other unmet needs at T1 and 11.4% (18/158) at T2. Of those missed at T1, only four were missed again at T2. Conclusions We identified six-items for inclusion in a brief screening tool, the SCNS-P&C-6, demonstrating good sensitivity in detecting unmet needs of caregivers of people with HGG. Use of this tool in clinical practice has the potential to improve access to care and the cancer experience for both the caregiver and person with brain tumor.
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spelling doaj-art-b970b833d55347f7b5061ac5ce2478992025-01-12T12:26:03ZengSpringerOpenJournal of Patient-Reported Outcomes2509-80202025-01-019111110.1186/s41687-024-00835-4Development of a brief screening measure of unmet supportive care needs (SCNS-P&C-6) in caregivers of people with high-grade gliomaJill Chen0Joanne M. Shaw1Haryana M. Dhillon2Georgia K. B. Halkett3Emma McDougall4Anna K. Nowak5Rachel Campbell6for the BRAINs Program InvestigatorsPsycho-Oncology Cooperative Research Group, School of Psychology, Faculty of Science, The University of SydneyPsycho-Oncology Cooperative Research Group, School of Psychology, Faculty of Science, The University of SydneyPsycho-Oncology Cooperative Research Group, School of Psychology, Faculty of Science, The University of SydneyCurtin School of Nursing/Curtin Health Innovation Research Institute, Faculty of Health Sciences, Curtin UniversityCurtin School of Nursing/Curtin Health Innovation Research Institute, Faculty of Health Sciences, Curtin UniversityMedical School, The University of Western AustraliaPsycho-Oncology Cooperative Research Group, School of Psychology, Faculty of Science, The University of SydneyAbstract Purpose Informal caregivers of people with high grade glioma (HGG) often have high levels of unmet support needs. Routine screening for unmet needs can facilitate appropriate and timely access to supportive care. We aimed to develop a brief screening tool for HGG caregiver unmet needs, based on the Supportive Care Needs Survey—Partners & Caregivers (SCNS-P&C). Methods Secondary analysis was performed on responses to the SCNS-P&C from 188 HGG caregivers, who participated in the Care-IS trial. SCNS-P&C items were assessed against four criteria: factor loadings; prevalence; variation in domain score; diagnostic accuracy. Supplementary analysis was conducted at two timepoints (T1 & T2) on the final selected items to identify caregivers indicating no needs on the screening items but reported a need on the original SCNS-P&C, suggesting they would be “missed” by the screening items. Results Six items performed best against psychometric criteria, capturing two domains: Cancer impact needs and Information and communication needs. Supplementary analysis showed screening items failed to identify only 7.4% (14/188) of caregivers with other unmet needs at T1 and 11.4% (18/158) at T2. Of those missed at T1, only four were missed again at T2. Conclusions We identified six-items for inclusion in a brief screening tool, the SCNS-P&C-6, demonstrating good sensitivity in detecting unmet needs of caregivers of people with HGG. Use of this tool in clinical practice has the potential to improve access to care and the cancer experience for both the caregiver and person with brain tumor.https://doi.org/10.1186/s41687-024-00835-4Brain cancerCaregiverScreeningUnmet needsSupportive care
spellingShingle Jill Chen
Joanne M. Shaw
Haryana M. Dhillon
Georgia K. B. Halkett
Emma McDougall
Anna K. Nowak
Rachel Campbell
for the BRAINs Program Investigators
Development of a brief screening measure of unmet supportive care needs (SCNS-P&C-6) in caregivers of people with high-grade glioma
Journal of Patient-Reported Outcomes
Brain cancer
Caregiver
Screening
Unmet needs
Supportive care
title Development of a brief screening measure of unmet supportive care needs (SCNS-P&C-6) in caregivers of people with high-grade glioma
title_full Development of a brief screening measure of unmet supportive care needs (SCNS-P&C-6) in caregivers of people with high-grade glioma
title_fullStr Development of a brief screening measure of unmet supportive care needs (SCNS-P&C-6) in caregivers of people with high-grade glioma
title_full_unstemmed Development of a brief screening measure of unmet supportive care needs (SCNS-P&C-6) in caregivers of people with high-grade glioma
title_short Development of a brief screening measure of unmet supportive care needs (SCNS-P&C-6) in caregivers of people with high-grade glioma
title_sort development of a brief screening measure of unmet supportive care needs scns p c 6 in caregivers of people with high grade glioma
topic Brain cancer
Caregiver
Screening
Unmet needs
Supportive care
url https://doi.org/10.1186/s41687-024-00835-4
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