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

Autor: Steenaard RV; Department of Internal Medicine, Máxima MC, 5631 BM Eindhoven/Veldhoven, The Netherlands.; CAPHRI School for Public Health and Primary Care, Ageing and Long-Term Care, Maastricht University, 6229 HX Maastricht, The Netherlands.; Department of Research, Netherlands Comprehensive Cancer Organization (IKNL), 3511 DT Utrecht, The Netherlands., Kerkhofs TMA; Department of Internal Medicine, Division of Medical Oncology, Maastricht University Medical Center+, 6229 HX Maastricht, The Netherlands., Zijlstra M; Department of Research, Netherlands Comprehensive Cancer Organization (IKNL), 3511 DT Utrecht, The Netherlands.; Department of Internal Medicine, St. Jans Gasthuis, 6001 BE Weert, The Netherlands.; Netherlands Association for Palliative Care (PZNL), 3511 DT Utrecht, The Netherlands., Mols F; Department of Research, Netherlands Comprehensive Cancer Organization (IKNL), 3511 DT Utrecht, The Netherlands.; Department of Medical and Clinical Psychology, Tilburg University, 5037 AB Tilburg, The Netherlands., Kerstens MN; Department of Internal Medicine, University Medical Center Groningen, University of Groningen, 9713 GZ Groningen, The Netherlands., Timmers HJLM; Department of Internal Medicine, Radboud University Medical Center, 6525 GA Nijmegen, The Netherlands., van Leeuwaarde RS; Department of Endocrine Oncology, University Medical Center Utrecht, 3584 CX Utrecht, The Netherlands., Dreijerink KMA; Department of Internal Medicine, Amsterdam University Medical Centers, Location VUMC, 1081 HV Amsterdam, The Netherlands., Eekhoff EMW; Department of Internal Medicine, Amsterdam University Medical Centers, Location VUMC, 1081 HV Amsterdam, The Netherlands., Nieveen van Dijkum EJM; Department of Surgery, Cancer Center Amsterdam, Amsterdam University Medical Centers, 1081 HV Amsterdam, The Netherlands., Corssmit EPM; Department of Endocrinology, Leiden University Medical Center, 2333 ZA Leiden, The Netherlands., Kapiteijn E; Department of Medical Oncology, Leiden University Medical Center, 2333 ZA Leiden, The Netherlands., Kremers MNT; CAPHRI School for Public Health and Primary Care, Ageing and Long-Term Care, Maastricht University, 6229 HX Maastricht, The Netherlands.; Department of Internal Medicine, St. Jans Gasthuis, 6001 BE Weert, The Netherlands., Feelders RA; Department of Endocrinology, Erasmus Medical Center, 3015 CA Rotterdam, The Netherlands., Haak HR; Department of Internal Medicine, Máxima MC, 5631 BM Eindhoven/Veldhoven, The Netherlands.; CAPHRI School for Public Health and Primary Care, Ageing and Long-Term Care, Maastricht University, 6229 HX Maastricht, The Netherlands.; Department of Internal Medicine, Division of General Internal Medicine, Maastricht University Medical Center+, 6229 HX Maastricht, The Netherlands.
Jazyk: angličtina
Zdroj: Cancers [Cancers (Basel)] 2022 Mar 08; Vol. 14 (6). Date of Electronic Publication: 2022 Mar 08.
DOI: 10.3390/cancers14061366
Abstrakt: 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: MEDLINE
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