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Health-related quality of life in adrenocortical carcinoma: Development of the disease-specific questionnaire ACC-QOL and results from the PROFILES registry
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.
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.
Abstract
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.
Description
Funding: This research was funded in part by HRA Pharma, Paris, France.
Date
2022
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Research Projects
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Keywords
EORTC, EUROPEAN-ORGANIZATION, QLQ-C30, SURVIVAL, adrenocortical carcinoma, chemotherapy, health-related quality of life, mitotane, questionnaire development, SDG 3 - Good Health and Well-being
Citation
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
License
info:eu-repo/semantics/openAccess