Exploring the potential usefulness of the GCOS-16 for expanded applications.

Advanced Search

Yvette Kuo, Kennedy Borle, Jehannine Austin

Author Information

Yvette Kuo: Department of Medical Genetics, Genetic Counseling Program, University of British Columbia, Vancouver, BC, Canada. ORCID
Kennedy Borle: Faculty of Graduate and Postdoctoral Studies, Interdisciplinary Studies Program, University of British Columbia, Vancouver, BC, Canada. ORCID
Jehannine Austin: Faculty of Medicine, Department of Medical Genetics, Department of Psychiatry, University of British Columbia, Vancouver, BC, Canada. jehannine.austin@ubc.ca. ORCID

PMID: 40121296 DOI: 10.1038/s41431-025-01830-z

The Genetic Counselling Outcome Scale-24 (GCOS-24) measures empowerment reliably in the context of genetic services, but its potential utility is constrained by some of its features. Using Rasch Measurement Theory, the GCOS-16 was developed: eight items were removed and the Likert scale collapsed from seven response options to three. The GCOS-16 has improved performance, and potential for usefulness beyond its original design i.e., identifying/triaging patients who may benefit most, and comparing genetic counseling (GC) to non-GC interventions. In this study, using the GCOS-24 data collected from a psychiatric GC clinic, we aimed to use a statistical method to determine the minimal clinically important difference (MCID) of the GCOS-16, and to examine whether the GCOS-16, or any individual items or subdomains could be used to identify patients who would most benefit from GC. The GCOS-24 data (24-items, 7-point Likert scale) from 307 charts were transformed into the GCOS-16 scoring (16 items, 3-point Likert scale). The GCOS-16 scores increased from pre- to post-GC (p��<��0.001, d��=��0.935), and the MCID was determined to be an increase of 2.5 points. There were significant differences between pre- to post-GC for all items and subdomains except for item #6. Patients receiving in-person GC were more likely to meet the MCID than those receiving service by telephone or telehealth (p��<��0.001). Our data demonstrate that the GCOS-16 is sensitive to change in empowerment without ceiling effects - this could be used to triage patients for GC, and to compare GC to non-GC interventions.

Valderas JM, Alonso J. Patient Reported Outcome Measures: A Model-Based Classification System for Research and Clinical Practice. Qual Life Res. 2008;17:1125��35. [DOI: 10.1007/s11136-008-9396-4]
McAllister M, Payne K, MacLeod R, Nicholls S, Donnai D, Davies L. Patient Empowerment in Clinical Genetics Services. J Health Psychol. 2008;13:895��905. [DOI: 10.1177/1359105308095063]
McAllister M, Wood A, Dunn G, Shiloh S, Todd C. The Genetic Counseling Outcome Scale: a new patient-reported outcome measure for clinical genetics services. Clin Genet. 2011;79:413��24. [DOI: 10.1111/j.1399-0004.2011.01636.x]
McAllister M, Dearing A. Patient reported outcomes and patient empowerment in clinical genetics services. Clin Genet. 2015;88:114��21. [DOI: 10.1111/cge.12520]
Davison N, Payne K, Eden M, McAllister M, Roberts SA, Ingram S, et al. Exploring the feasibility of delivering standardized genomic care using ophthalmology as an example. Genet Med. 2017;19:1032��9. [DOI: 10.1038/gim.2017.9]
Borle K, Morris E, Inglis A, Austin J. Risk communication in genetic counseling: Exploring uptake and perception of recurrence numbers, and their impact on patient outcomes. Clin Genet. 2018;94:239��45. [DOI: 10.1111/cge.13379]
Palmer CGS, McConkie-Rosell A, Holm IA, LeBlanc K, Sinsheimer JS, Briere LC, et al. Understanding Adult Participant and Parent Empowerment Prior to Evaluation in the Undiagnosed Diseases Network. J Genet Couns. 2018;27:1087��101. [DOI: 10.1007/s10897-018-0228-6]
Slomp C, Morris E, Inglis A, Lehman A, Austin J. Patient outcomes of genetic counseling: Assessing the impact of different approaches to family history collection. Clin Genet. 2018;93:830��6. [DOI: 10.1111/cge.13176]
Costal Tirado A, McDermott AM, Thomas C, Ferrick D, Harris J, Edwards A, et al. Using Patient-Reported Outcome Measures for Quality Improvement in Clinical Genetics: an Exploratory Study. J Genet Couns. 2017;26:1017��28. [DOI: 10.1007/s10897-017-0079-6]
Grant PE, Pampaka M, Payne K, Clarke A, McAllister M. Developing a short-form of the Genetic Counselling Outcome Scale: The Genomics Outcome Scale. Eur J Med Genet. 2019;62:324��34. [DOI: 10.1016/j.ejmg.2018.11.015]
Diness BR, Overbeck G, Hjortsh��j TD, Hammer TB, Timshel S, S��rensen E, et al. Translation and Adaptation of the Genetic Counselling Outcome Scale (GCOS-24) for Use in Denmark. J Genet Couns. 2017;26:1080��9. [DOI: 10.1007/s10897-017-0086-7]
Mu��oz-Cabello P, Garc��a-Mi��a��r S, Espinel-Vallejo ME, Fern��ndez-Franco L, Stephens A, Santos-Simarro F, et al. Translation and Cross-Cultural Adaptation with Preliminary Validation of GCOS-24 for Use in Spain. J Genet Couns. 2018;27:732��43. [DOI: 10.1007/s10897-017-0154-z]
Voorwinden JS, Plantinga M, Krijnen W, Ausems M, Knoers N, Velthuizen M, et al. A validated PROM in genetic counselling: the psychometric properties of the Dutch version of the Genetic Counselling Outcome Scale. Eur J Hum Genet. 2019;27:681��90. [DOI: 10.1038/s41431-018-0318-9]
Yuen J, Lee SY, Courtney E, Lim J, Soh H, Li ST, et al. Evaluating empowerment in genetic counseling using patient-reported outcomes. Clin Genet. 2020;97:246��56. [DOI: 10.1111/cge.13646]
Segundo-Ribeiro M, Bacal�� BT, Alvarenga WdeA, Nascimento LC, McAllister M, Fl��ria-Santos M. Adaptation and preliminary validation of the genetic counseling outcome scale (GCOS-24) in a Brazilian genetic counseling setting. Eur J Med Genet. 2020;63:104018. [DOI: 10.1016/j.ejmg.2020.104018]
Yusuf A, Peltekova I, Savion-Lemieux T, Frei J, Joober R, Howe J, et al. Adaptation and validation of the Genetic Counseling Outcome Scale for autism spectrum disorders and related conditions. J Genet Couns. 2021;30:305��18. [DOI: 10.1002/jgc4.1323]
Redondo L, McAllister M. Cross-cultural adaptation of the Genetic Counseling Outcome Scale (GCOS-24) for use in Canada: A qualitative study. J Genet Couns. 2024;33:623��42. [DOI: 10.1002/jgc4.1771]
Gerrard S, Inglis A, Morris E, Austin J. Relationships between patient- and session-related variables and outcomes of psychiatric genetic counseling. Eur J Hum Genet. 2020;28:907��14. [DOI: 10.1038/s41431-020-0592-1]
Inglis A, Koehn D, McGillivray B, Stewart SE, Austin J. Evaluating a unique, specialist psychiatric genetic counseling clinic: uptake and impact. Clin Genet. 2015;87:218��24. [DOI: 10.1111/cge.12415]
Morris E, Best J, Inglis A, Austin J. Impact of the physical environment on patient outcomes of genetic counseling: An exploratory study. J Genet Couns. 2019;28:760��6. [DOI: 10.1002/jgc4.1111]
Borle K, Austin J, Barbic S. Using Rasch measurement theory to explore the fitness for purpose of the genetic counseling outcome scale: a tale of two scales. Qual Life Res. 2023;32:895��904. [DOI: 10.1007/s11136-022-03289-7]
Norman GR, Sloan JA, Wyrwich KW. Interpretation of Changes in Health-related Quality of Life: The Remarkable Universality of Half a Standard Deviation. Med Care. 2003;41:582��92. [DOI: 10.1097/01.MLR.0000062554.74615.4C]
Franceschini M, Boffa A, Pignotti E, Andriolo L, Zaffagnini S, Filardo G. The Minimal Clinically Important Difference Changes Greatly Based on the Different Calculation Methods. Am J Sports Med. 2023;51:1067��73. [DOI: 10.1177/03635465231152484]

Journal Article

OpenLB
Open Library of Bioscience