Translation and Adaptation of the Genetic Counselling Outcome Scale (GCOS-24) for Use in Denmark

Birgitte Rode Diness; Gritt Overbeck; Tina Duelund Hjortshøj; Trine Bjørg Hammer; Susanne Timshel; Else Sørensen; Marion McAllister

doi:10.1007/s10897-017-0086-7

Translation and Adaptation of the Genetic Counselling Outcome Scale (GCOS-₂₄) for Use in Denmark

Birgitte Rode Diness, Gritt Overbeck, Tina Duelund Hjortshøj, Trine Bjørg Hammer, Susanne Timshel, Else Sørensen, Marion McAllister

10 Citations (Scopus)

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.

Original language	English
Journal	Journal of Genetic Counseling
Volume	26
Issue number	5
Pages (from-to)	1080–1089
Number of pages	10
ISSN	1059-7700
DOIs	https://doi.org/10.1007/s10897-017-0086-7
Publication status	Published - 1 Oct 2017

Keywords

Journal Article

Access to Document

10.1007/s10897-017-0086-7

s10897-017-0086-7Final published version, 305 KB

Cite this

@article{10d6bcae0e7d480eb1bdb241f61c93d3,

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{\textquoteright}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.",

keywords = "Journal Article",

author = "Diness, {Birgitte Rode} and Gritt Overbeck and Hjortsh{\o}j, {Tina Duelund} and Hammer, {Trine Bj{\o}rg} and Susanne Timshel and Else S{\o}rensen and Marion McAllister",

year = "2017",

month = oct,

day = "1",

doi = "10.1007/s10897-017-0086-7",

language = "English",

volume = "26",

pages = "1080–1089",

journal = "Journal of Genetic Counseling",

issn = "1059-7700",

publisher = "Springer",

number = "5",

}

TY - JOUR

T1 - Translation and Adaptation of the Genetic Counselling Outcome Scale (GCOS-24) for Use in Denmark

AU - Diness, Birgitte Rode

AU - Overbeck, Gritt

AU - Hjortshøj, Tina Duelund

AU - Hammer, Trine Bjørg

AU - Timshel, Susanne

AU - Sørensen, Else

AU - McAllister, Marion

PY - 2017/10/1

Y1 - 2017/10/1

N2 - 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.

AB - 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.

KW - Journal Article

U2 - 10.1007/s10897-017-0086-7

DO - 10.1007/s10897-017-0086-7

M3 - Journal article

C2 - 28265802

SN - 1059-7700

VL - 26

SP - 1080

EP - 1089

JO - Journal of Genetic Counseling

JF - Journal of Genetic Counseling

IS - 5

ER -