Development of HiSQOL: A Hidradenitis Suppurativa-Specific Quality of Life Instrument.
Hidradenitis suppurativa
Patient-reported outcome measures
Quality of life
Questionnaire development
Journal
Skin appendage disorders
ISSN: 2296-9195
Titre abrégé: Skin Appendage Disord
Pays: Switzerland
ID NLM: 101670617
Informations de publication
Date de publication:
Jun 2019
Jun 2019
Historique:
received:
27
09
2018
accepted:
06
12
2018
entrez:
2
8
2019
pubmed:
2
8
2019
medline:
2
8
2019
Statut:
ppublish
Résumé
Hidradenitis suppurativa (HS) is a chronic and painful skin disease. In addition, HS lesions may be associated with pus and odour, potentially leading to significant stigma and, consequently, greatly affected quality of life (QOL). QOL is a multidimensional construct, which can be measured in various ways. However, generic or dermatologic QOL measures may not capture changes in QOL particularly affected in HS. Accordingly, patients and experts included in the HIdradenitis SuppuraTiva cORe outcomes set International Collaboration (HISTORIC) agreed that future clinical HS trials should measure HS-specific QOL. To develop an HS-specific QOL instrument (HiSQOL, Hidradenitis Suppurativa Quality of life). The initial phases of the questionnaire development, described in this study, included item generation by patient interviews, development of a pilot questionnaire, questionnaire refinement, and pilot testing. For item generation, 21 patients were interviewed individually or in focus groups. Analysis of the interviews identified 105 candidate items and, next, a pilot questionnaire was developed. Finally, item reduction and two rounds of pilot testing resulted in a 23-item questionnaire representing physical, psychological, and social QOL dimensions. We have comprehensively explored on HS's possible effect on the QOL of the affected individuals and identified a 23-item HS-specific QOL questionnaire. The questionnaire proved to be feasible, acceptable, and comprehensible in the second round of pilot testing. With HiSQOL, researchers can measure HS-specific QOL in future clinical trials, potentially enabling them to discover more effective treatment options. It is envisaged, that after thorough validation in a trial setting, a streamlined version of HISQOL may also become available for clinical use in daily practice.
Sections du résumé
BACKGROUND
BACKGROUND
Hidradenitis suppurativa (HS) is a chronic and painful skin disease. In addition, HS lesions may be associated with pus and odour, potentially leading to significant stigma and, consequently, greatly affected quality of life (QOL). QOL is a multidimensional construct, which can be measured in various ways. However, generic or dermatologic QOL measures may not capture changes in QOL particularly affected in HS. Accordingly, patients and experts included in the HIdradenitis SuppuraTiva cORe outcomes set International Collaboration (HISTORIC) agreed that future clinical HS trials should measure HS-specific QOL.
OBJECTIVES
OBJECTIVE
To develop an HS-specific QOL instrument (HiSQOL, Hidradenitis Suppurativa Quality of life).
METHOD
METHODS
The initial phases of the questionnaire development, described in this study, included item generation by patient interviews, development of a pilot questionnaire, questionnaire refinement, and pilot testing.
RESULTS
RESULTS
For item generation, 21 patients were interviewed individually or in focus groups. Analysis of the interviews identified 105 candidate items and, next, a pilot questionnaire was developed. Finally, item reduction and two rounds of pilot testing resulted in a 23-item questionnaire representing physical, psychological, and social QOL dimensions.
CONCLUSIONS
CONCLUSIONS
We have comprehensively explored on HS's possible effect on the QOL of the affected individuals and identified a 23-item HS-specific QOL questionnaire. The questionnaire proved to be feasible, acceptable, and comprehensible in the second round of pilot testing. With HiSQOL, researchers can measure HS-specific QOL in future clinical trials, potentially enabling them to discover more effective treatment options. It is envisaged, that after thorough validation in a trial setting, a streamlined version of HISQOL may also become available for clinical use in daily practice.
Identifiants
pubmed: 31367600
doi: 10.1159/000496234
pii: sad-0005-0221
pmc: PMC6615484
doi:
Types de publication
Journal Article
Langues
eng
Pagination
221-229Déclaration de conflit d'intérêts
The authors have no conflicts of interest to declare.
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