Proposal of a Portuguese Tool for Quality Assessment of Genetic Counselling: a New Tool for Healthcare Professionals

Milena Paneque, Catarina Costa, Carolina Lemos, Miguel Alves-Ferreira, Jorge Sequeiros, Marina Serra Lemos

Abstract


Introduction: The lack of tools for quality assessment of genetic counselling is recognized in national and international studies. The correlation of quality of healthcare practice with greater satisfaction of patients and affected families is also well established. The present study describes the development and validation of the first Portuguese scale for quality assessment of genetic counselling practice. It encompasses a proposal of a new tool for the evaluation of the process by professionals.
Material and Methods: The definition of an initial pool of items and their organization was based on a literature review and identification of the main genetic counselling dimensions as well as the theoretical dimensions of the Reciprocal Engagement Model. After a pre-test validation the scale was submitted to psychometric validation using a sample of 30 participants who evaluated 81 genetic counselling sessions.
Results: Based on statistical and empirical criteria the best items were selected. The final 50 items- version comprises five dimensions: education, counselees’ characteristics and decision-making, therapeutic relationship, effects of the process on the counselees and
services organization.
Discussion: Results showed consistent psychometric properties of the scale supported on theoretical and practice concepts of genetic counseling. The reduced number of participants involved in psychometric validation is a limitation of the study, which reflected the
reduced number of professionals in genetic healthcare services.
Conclusion: The scale proposed at this study is a novel and multidimensional instrument that aimed to contribute to the improvement of genetic counselling practice in Portugal.


Keywords


Genetic Counseling; Genetic Services; Outcome Assessment (Health Care); Portugal; Psychometrics



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