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

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

Author(s): Ng, CA; Luckett, T; Mulhern, B; Kee, D; Lai-Kwon, J; Joshua, AM;
Details: Publication Year 2024-06-01,Volume 34,Issue #3,Page 248-257
Journal Title: Melanoma Research
Publication Type: Research article
Abstract: 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. 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. 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. Pending further development and psychometric testing, clinical researchers may need to take a modular approach to measuring the HRQL impacts of mUM.
Publisher: Wolters Kluwer
Keywords: Humans; *Uveal Neoplasms/psychology/pathology; *Melanoma/psychology; *Quality of Life; Female; Male; Middle Aged; Surveys and Questionnaires; Aged; *Qualitative Research; Adult; Neoplasm Metastasis
Department(s): Medical Oncology
Publisher's Version: https://doi.org/10.1097/cmr.0000000000000961
Open Access at Publisher's Site: https://doi.org/10.1097/cmr.0000000000000961
Terms of Use/Rights Notice: Refer to copyright notice on published article.

Creation Date: 2024-07-17 03:09:43

Last Modified: 2024-07-17 03:11:16