title: Translation and Adaptation of the Genetic Counselling Outcome Scale (GCOS-24) for Use in Denmark.
abstract: Outcome measurement in clinical genetics is challenging. Robust outcome measures are needed to provide evidence to support service development within genetic counseling. The Genetic Counselling Outcome Scale (GCOS-24), a Patient Reported Outcome Measure (PROM), was developed in English and validated with clinical genetics patients in the British NHS. This study reports the translation and adaptation of the GCOS-24 for use in Denmark. GCOS-24 was translated and back translated, supervised by an expert committee. Feedback on the first version was collected from genetic counseling patients in qualitative interviews focusing on instructions for use, response options and specific items considered semantically difficult. After further adjustment the adapted and translated version was administered to a second sample of patients, with responses analyzed using descriptive statistics. Eighteen interviews were conducted, and led to adjustment of item wording. Sixty-one patients completed the final version GCOS-24dk. Internal consistency is good (Cronbach's α =0.79), with an acceptable number of missing responses and no floor or ceiling effect observed. GCOS-24 has been successfully translated and adapted for use in a Danish setting. The study confirms the feasibility of local adaptation of patient reported outcome measures and stresses the importance of adaptation, even across quite similar populations and health care systems.
authors.affiliation: Department of Clinical Genetics, Kennedy Center, Rigshospitalet, Copenhagen University Hospital, Glostrup, Denmark. Birgitte.rode.diness@regionh.dk.|Department of Clinical Genetics , RH4062, Rigshospitalet, Copenhagen University Hospital, Blegdamsvej 9, 2100, Copenhagen Ø, Denmark. Birgitte.rode.diness@regionh.dk.
authors.forename: Birgitte Rode
authors.initials: BR
authors.lastname: Diness
authors.affiliation: The Research Unit for General Practice and Section of General Practice, Copenhagen University, Copenhagen, Denmark.
authors.forename: Gritt
authors.initials: G
authors.lastname: Overbeck
authors.affiliation: Department of Clinical Genetics, Kennedy Center, Rigshospitalet, Copenhagen University Hospital, Glostrup, Denmark.
authors.forename: Tina Duelund
authors.initials: TD
authors.lastname: Hjortshøj
authors.affiliation: Department of Clinical Genetics, Kennedy Center, Rigshospitalet, Copenhagen University Hospital, Glostrup, Denmark.
authors.forename: Trine Bjørg
authors.initials: TB
authors.lastname: Hammer
authors.affiliation: Department of Clinical Genetics, Kennedy Center, Rigshospitalet, Copenhagen University Hospital, Glostrup, Denmark.
authors.forename: Susanne
authors.initials: S
authors.lastname: Timshel
authors.affiliation: Department of Clinical Genetics, Kennedy Center, Rigshospitalet, Copenhagen University Hospital, Glostrup, Denmark.
authors.forename: Else
authors.initials: E
authors.lastname: Sørensen
authors.affiliation: Institute of Cancer & Genetics, Cardiff University School of Medicine, Cardiff, UK.
authors.forename: Marion
authors.initials: M
authors.lastname: McAllister
mesh_terms: D003718:Denmark; D005260:Female; D005817:Genetic Counseling / Q000592:standards*; D006801:Humans; D008297:Male; D017063:Outcome Assessment, Health Care; D011594:Psychometrics; D015203:Reproducibility of Results; D011795:Surveys and Questionnaires / Q000592:standards*; D014177:Translations
keywords: Empowerment; Genetic counseling; PROM; Translation and cultural adaptation