Health-Related Quality of Life in Adrenocortical Carcinoma: Development of the Disease-Specific Questionnaire ACC-QOL and Results from the PROFILES Registry

Autor: Rebecca V. Steenaard, Thomas M. A. Kerkhofs, Myrte Zijlstra, Floortje Mols, Michiel N. Kerstens, Henry J. L. M. Timmers, Rachel S. van Leeuwaarde, Koen M. A. Dreijerink, Elisabeth M. W. Eekhoff, Els J. M. Nieveen van Dijkum, Eleonora P. M. Corssmit, Ellen Kapiteijn, Marjolein N. T. Kremers, Richard A. Feelders, Harm R. Haak
Přispěvatelé: Health Services Research, RS: CAPHRI - R1 - Ageing and Long-Term Care, MUMC+: MA Med Staf Artsass Interne Geneeskunde (9), Interne Geneeskunde, Guided Treatment in Optimal Selected Cancer Patients (GUTS), Surgery, AGEM - Amsterdam Gastroenterology Endocrinology Metabolism, Internal Medicine, Medical and Clinical Psychology, Internal medicine, Amsterdam Gastroenterology Endocrinology Metabolism, CCA - Cancer Treatment and quality of life, AMS - Musculoskeletal Health, AMS - Tissue Function & Regeneration, Cancer Center Amsterdam
Rok vydání: 2022
Předmět:
Zdroj: Cancers, 14, 6
Cancers, 14(6):1366. Multidisciplinary Digital Publishing Institute (MDPI)
Cancers, 14(6):1366. MDPI AG
Cancers, 14
Steenaard, R V, Kerkhofs, T M A, Zijlstra, M, Mols, F, Kerstens, M N, Timmers, H J L M, van Leeuwaarde, R S, Dreijerink, K M A, Eekhoff, E M W, Nieveen van Dijkum, E J M, Corssmit, E P M, Kapiteijn, E, Kremers, M N T, Feelders, R A & Haak, H R 2022, ' Health-Related Quality of Life in Adrenocortical Carcinoma : Development of the Disease-Specific Questionnaire ACC-QOL and Results from the PROFILES Registry ', Cancers, vol. 14, no. 6, 1366 . https://doi.org/10.3390/cancers14061366
Cancers, 14(6):1366. MDPI Multidisciplinary Digital Publishing Institute
Cancers; Volume 14; Issue 6; Pages: 1366
Cancers, 14(6). MDPI
ISSN: 2072-6694
DOI: 10.3390/cancers14061366
Popis: Simple Summary: Patients with the rare cancer adrenocortical carcinoma are exposed to many symptoms and treatment side-effects. Research on how this can affect their health-related quality of life (HRQoL) is limited, however. This article includes the first assessment of HRQoL in a population-based cohort of patients with adrenocortical carcinoma with the European Organization for Research and Treatment of Cancer QLQ-C30 questionnaire and the newly developed disease-specific additional questionnaire ACC-QOL. The ACC-QOL has good psychometric properties in terms of validity, reliability, and responsiveness. Patients diagnosed more than 5 years ago reported a relatively good HRQoL compared with the Dutch reference population, but experienced residual fatigue and emotional problems. Patients after additional surgery reported a slightly lower HRQoL due to physical limitations. Patients who had recently received mitotane or chemotherapy reported a worse HRQoL and problems in many domains. This knowledge and the new disease-specific questionnaire can aid future research, side-effect monitoring, treatment guidance, and shared decision making. We aimed to develop a disease-specific adrenocortical carcinoma (ACC) health-related quality of life (HRQoL) questionnaire (ACC-QOL) and assess HRQoL in a population-based cohort of patients with ACC. Development was in line with European Organization for Research and Treatment of Cancer (EORTC) guidelines, though not an EORTC product. In phase I and II, we identified 90 potential HRQoL issues using literature and focus groups, which were reduced to 39 by healthcare professionals. Pilot testing resulted in 28 questions, to be used alongside the EORTC QLQ-C30. In Phase III, 100 patients with ACC were asked to complete the questionnaires twice in the PROFILES registry (3-month interval, respondents: first 67, second 51). Confirmatory factor analysis demonstrated the structural validity of 26 questions with their scale structure (mitotane side-effects, hypercortisolism/hydrocortisone effects, emotional effects). Internal consistency and reliability were good (Cronbach's alpha 0.897, Interclass correlation coefficient 0.860). Responsiveness analysis showed good discriminative ability (AUC 0.788). Patients diagnosed more than 5 years ago reported a good HRQoL compared with the Dutch reference population, but experienced residual fatigue and emotional problems. Patients who underwent recent treatment reported a lower HRQoL and problems in several domains. In conclusion, we developed an ACC-specific HRQoL questionnaire with good psychometric properties.
Databáze: OpenAIRE
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