What matters most to people with metastatic uveal melanoma? A qualitative study to inform future measurement of health-related quality of life

Ng, C-A; Luckett, T; Mulhern, B; Kee, D; Lai-Kwon, J; Joshua, AM

What matters most to people with metastatic uveal melanoma? A qualitative study to inform future measurement of health-related quality of life

Ng, C-A Luckett, T Mulhern, B Kee, D Lai-Kwon, J Joshua, AM

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Publisher:: Ovid Technologies (Wolters Kluwer Health)
Publication Type:: Journal Article
Citation:: Melanoma Research

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Field	Value	Language
dc.contributor.author	Ng, C-A
dc.contributor.author	Luckett, T
dc.contributor.author	Mulhern, B
dc.contributor.author	Kee, D
dc.contributor.author	Lai-Kwon, J
dc.contributor.author	Joshua, AM
dc.date.accessioned	2024-03-14T04:39:40Z
dc.date.available	2024-03-14T04:39:40Z
dc.identifier.citation	Melanoma Research
dc.identifier.issn	0960-8931
dc.identifier.uri	http://hdl.handle.net/10453/176707
dc.description.abstract	<jats:sec> <jats:title>Background</jats:title> <jats:p>Metastatic uveal melanoma (mUM) is a rare cancer with poor prognosis, but novel treatments are emerging. Currently, there are no mUM-specific health-related quality of life (HRQL) questionnaires available for clinical research. We aimed to explore how mUM and its treatment affect HRQL and assess the content validity of existing questionnaires.</jats:p> </jats:sec> <jats:sec> <jats:title>Methods</jats:title> <jats:p>Participants were patients with mUM and healthcare professionals involved in their care. Qualitative data were collected using semi-structured interviews and focus groups. Data collection and analysis used an integrative approach involving inductive questions/coding to elicit new concepts and deductive questions/coding based on domains of existing HRQL questionnaires. Initial interviews/focus groups focussed on HRQL questionnaires designed for patients with uveal melanoma or liver metastases. As new concepts were elicited, domains and items from other questionnaires were subsequently added.</jats:p> </jats:sec> <jats:sec> <jats:title>Results</jats:title> <jats:p>Seventeen patients and 16 clinicians participated. HRQL concerns assessed by uveal melanoma-specific questionnaires were largely resolved by the time of metastasis. The Functional Assessment of Cancer Therapy - Immunotherapy Module (FACT-ICM) adequately captured most immunotherapy-related side effects during initial treatment cycles. However, most patients emphasised emotional impacts over physical ones, focussing on the existential threat posed by disease amidst uncertainty about treatment accessibility and effectiveness. Patients were also concerned with treatment burden, including time commitment, travel, need for hospitalisation, and expenses. The relative importance of HRQL issues varied over time and across treatment modalities, with no single questionnaire being sufficient.</jats:p> </jats:sec> <jats:sec> <jats:title>Conclusion</jats:title> <jats:p>Pending further development and psychometric testing, clinical researchers may need to take a modular approach to measuring the HRQL impacts of mUM.</jats:p> </jats:sec>
dc.language	en
dc.publisher	Ovid Technologies (Wolters Kluwer Health)
dc.relation.ispartof	Melanoma Research
dc.relation.isbasedon	10.1097/cmr.0000000000000961
dc.rights	info:eu-repo/semantics/openAccess
dc.subject	1103 Clinical Sciences
dc.subject.classification	Oncology & Carcinogenesis
dc.subject.classification	3202 Clinical sciences
dc.subject.classification	3211 Oncology and carcinogenesis
dc.title	What matters most to people with metastatic uveal melanoma? A qualitative study to inform future measurement of health-related quality of life
dc.type	Journal Article
utslib.for	1103 Clinical Sciences
pubs.organisational-group	University of Technology Sydney
pubs.organisational-group	University of Technology Sydney/Faculty of Health
pubs.organisational-group	University of Technology Sydney/Faculty of Health/Centre for Health Economics Research and Evaluation
utslib.copyright.status	open_access	*
dc.date.updated	2024-03-14T04:39:39Z
pubs.publication-status	Published online

Abstract:

Background Metastatic uveal melanoma (mUM) is a rare cancer with poor prognosis, but novel treatments are emerging. Currently, there are no mUM-specific health-related quality of life (HRQL) questionnaires available for clinical research. We aimed to explore how mUM and its treatment affect HRQL and assess the content validity of existing questionnaires. Methods Participants were patients with mUM and healthcare professionals involved in their care. Qualitative data were collected using semi-structured interviews and focus groups. Data collection and analysis used an integrative approach involving inductive questions/coding to elicit new concepts and deductive questions/coding based on domains of existing HRQL questionnaires. Initial interviews/focus groups focussed on HRQL questionnaires designed for patients with uveal melanoma or liver metastases. As new concepts were elicited, domains and items from other questionnaires were subsequently added. Results Seventeen patients and 16 clinicians participated. HRQL concerns assessed by uveal melanoma-specific questionnaires were largely resolved by the time of metastasis. The Functional Assessment of Cancer Therapy - Immunotherapy Module (FACT-ICM) adequately captured most immunotherapy-related side effects during initial treatment cycles. However, most patients emphasised emotional impacts over physical ones, focussing on the existential threat posed by disease amidst uncertainty about treatment accessibility and effectiveness. Patients were also concerned with treatment burden, including time commitment, travel, need for hospitalisation, and expenses. The relative importance of HRQL issues varied over time and across treatment modalities, with no single questionnaire being sufficient. Conclusion Pending further development and psychometric testing, clinical researchers may need to take a modular approach to measuring the HRQL impacts of mUM.

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http://hdl.handle.net/10453/176707