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Translation, cross-cultural adaptation, and preliminary validation of a patient-reported outcome measure for genetic counseling outcomes in Sweden
Linköping University, Department of Biomedical and Clinical Sciences, Division of Cell Biology. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Center for Diagnostics, Clinical genetics.ORCID iD: 0000-0001-7192-4532
Linköping University, Department of Behavioural Sciences and Learning, Disability Research Division. Linköping University, Faculty of Arts and Sciences. Linköping University, The Swedish Institute for Disability Research.ORCID iD: 0000-0002-0446-0827
Cardiff Univ, Wales.
Linköping University, Department of Health, Medicine and Caring Sciences, Division of Nursing Sciences and Reproductive Health. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Local Health Care Services in East Östergötland, Department of Internal Medicine in Norrköping.ORCID iD: 0000-0001-7431-2873
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2024 (English)In: Journal of Genetic Counseling, ISSN 1059-7700, E-ISSN 1573-3599Article in journal (Refereed) Epub ahead of print
Abstract [en]

Genetic counseling is key for understanding the consequences of hereditary and genetic diseases and, therefore, crucial for patients, their families, and healthcare providers. Genetic counseling facilitates individuals' comprehension, decision-making, and adaptation to hereditary diseases. This study focuses on the Swedish adaptation of the Genetic Counseling Outcome Scale-24 (GCOS-24), an internationally validated, patient-reported outcome measure (PROM) for quantifying patient empowerment in genetic counseling. This study aimed to translate and cross-culturally adapt the GCOS-24 to measure patient-reported outcome from genetic counseling in Sweden. The adaptation process was meticulously conducted, adhering to international guidelines, with cross-cultural adaptation, translation, and back translation, to ensure semantic, conceptual, and idiomatic equivalence with the original English version. Face validity and understandability was assured using qualitative cognitive interviews conducted with patient representatives, and by a committee of experts in the field. The psychometric properties of the Swedish version of GCOS-24 (GCOS-24swe) were evaluated using a robust sample of 374 patients. These individuals received genetic counseling by telephone or video, necessitated by the constraints of the COVID-19 pandemic. Participants responded to GCOS-24swe both before and after genetic counseling. The GCOS-24swe demonstrated face validity, good internal consistency (Cronbach's alpha = 0.86), significant responsiveness (Cohen's d = 0.65, p < 0.001), and good construct validity. The study's findings underscore the GCOS-24swe's potential as an effective instrument in both clinical practice and research within Sweden. It offers a valuable means for assessing patient empowerment, a key goal of genetic counseling. Additional psychometric assessment of test-retest reliability and interpretability would further enhance the utility of GCOS-24swe.

Place, publisher, year, edition, pages
WILEY , 2024.
Keywords [en]
clinical genetics; genetic counseling; outcome measures; patient empowerment
National Category
Medical Genetics
Identifiers
URN: urn:nbn:se:liu:diva-203237DOI: 10.1002/jgc4.1896ISI: 001208140300001PubMedID: 38665117OAI: oai:DiVA.org:liu-203237DiVA, id: diva2:1856246
Note

Funding Agencies|County Council of Ostergotland, Sweden

Available from: 2024-05-06 Created: 2024-05-06 Last updated: 2024-05-06

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Pestoff, RebeckaDanielsson, HenrikJohansson, PeterGunnarsson, Cecilia
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Division of Cell BiologyFaculty of Medicine and Health SciencesClinical geneticsDisability Research DivisionFaculty of Arts and SciencesThe Swedish Institute for Disability ResearchDivision of Nursing Sciences and Reproductive HealthDepartment of Internal Medicine in NorrköpingDivision of Diagnostics and Specialist Medicine
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Journal of Genetic Counseling
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