TY - JOUR
T1 - Health-Related Quality of Life in Adrenocortical Carcinoma
T2 - Development of the Disease-Specific Questionnaire ACC-QOL and Results from the PROFILES Registry
AU - Steenaard, Rebecca V
AU - Kerkhofs, Thomas M A
AU - Zijlstra, Myrte
AU - Mols, Floortje
AU - Kerstens, Michiel N
AU - Timmers, Henry J L M
AU - van Leeuwaarde, Rachel S
AU - Dreijerink, Koen M A
AU - Eekhoff, Elisabeth M W
AU - Nieveen van Dijkum, Els J M
AU - Corssmit, Eleonora P M
AU - Kapiteijn, Ellen
AU - Kremers, Marjolein N T
AU - Feelders, Richard A
AU - Haak, Harm R
N1 - Funding Information:
Funding: This research was funded in part by HRA Pharma, Paris, France.
Publisher Copyright:
© 2022 by the authors. Licensee MDPI, Basel, Switzerland.
PY - 2022/3/1
Y1 - 2022/3/1
N2 - 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.
AB - 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.
UR - http://www.scopus.com/inward/record.url?scp=85126071843&partnerID=8YFLogxK
U2 - 10.3390/cancers14061366
DO - 10.3390/cancers14061366
M3 - Article
C2 - 35326518
SN - 2072-6694
VL - 14
JO - Cancers
JF - Cancers
IS - 6
M1 - 1366
ER -
