The Genetic Counseling Outcome Scale: A new patient-reported outcome measure for clinical genetics services
Reads0
Chats0
TLDR
The Genetic Counseling Outcome Scale is a new patient‐reported outcome measure for clinical genetics services that aims to improve the quality of life for patients in need of genetic counselling.Abstract:
The aim of this study was to develop a patient-reported outcome measure (PROM) for clinical genetics services. Previous research was used to develop a draft 84-item questionnaire, which was completed by 527 members of patient support groups. Responses were subjected to exploratory factor analysis (EFA). Parallel analysis was used to identify the number of factors to extract using oblique rotation. Twenty-four questions were selected to form the Genetic Counseling Outcome Scale (GCOS-24). Two hundred and forty-one patients completed a questionnaire pack before and after attendance at a genetics clinic that included the GCOS-24, and validated measures of health locus of control, perceived personal control, anxiety, depression, satisfaction with life and authenticity. Concurrent validity of the GCOS-24 was assessed using bivariate correlation. Sensitivity to change of the GCOS-24 was assessed using analysis of variance. EFA identified a single overarching construct consisting of seven dimensions. Internal consistency ( = 0.87) and test–retest reliability (r = 0.86) are good. The GCOS-24 shows convergent and divergent validities, and sensitivity to change over time with a medium-to-large effect size (Cohen's d = 0.70). The GCOS-24 has potential as a clinical genetics-specific PROM.read more
Citations
More filters
Journal ArticleDOI
Patient empowerment: The need to consider it as a measurable patient-reported outcome for chronic conditions
TL;DR: It is argued for consideration of patient empowerment itself as a directly measurable patient reported outcome for chronic conditions, some issues in adopting this approach are highlighted, and a research agenda is outlined to enable healthcare evaluation on the basis of patient empowerment.
Journal ArticleDOI
Patient involvement in the development of patient‐reported outcome measures: a scoping review
TL;DR: Patient‐reported outcome measures (PROMs) measure patients’ perspectives on health outcomes and are increasingly used in health care and are essential that patients are involved in PROM development.
Journal ArticleDOI
Assessment of patient empowerment--a systematic review of measures.
TL;DR: An overview of studies assessing psychometric properties of questionnaires purporting to capture patient empowerment is provided, to provide a basis from which to develop consensus on a core set of patient empowerment constructs and for further work to develop a appropriately validated measure to capture this.
Journal ArticleDOI
Valuing the economic benefits of complex interventions: when maximising health is not sufficient.
TL;DR: There is a need for a more considered approach that can take account of the perceived value for non-health attributes for some complex interventions, including genetic services and tests.
Journal ArticleDOI
Evaluating a unique, specialist psychiatric genetic counseling clinic: uptake and impact
TL;DR: In a naturalistic setting, GC increases empowerment and self‐efficacy in this population of individuals with non‐syndromic psychiatric disorders and their families.
References
More filters
Book
Health Measurement Scales: A Practical Guide to Their Development and Use
TL;DR: In this article, the authors propose three basic concepts: devising the items, selecting the items and selecting the responses, from items to scales, reliability and validity of the responses.
Journal ArticleDOI
Evaluating the use of exploratory factor analysis in psychological research.
TL;DR: This paper reviewed the major design and analytical decisions that must be made when conducting exploratory factor analysis and notes that each of these decisions has important consequences for the obtained results, and the implications of these practices for psychological research are discussed.
Posted Content
Review of the Satisfaction with Life Scale
William Pavot,Ed Diener +1 more
TL;DR: The Satisfaction With Life Scale (SWLS) as discussed by the authors was developed to assess satisfaction with the respondent's life as a whole, which does not assess the individual's satisfaction with life domains such as health or mental health but allows subjects to integrate and weight these domains in whatever way they choose.
Journal ArticleDOI
Factor analysis in the development and refinement of clinical assessment instruments.
Frank J. Floyd,Keith F. Widaman +1 more
TL;DR: The goals of exploratory and confirmatory factor analysis are described and procedural guidelines for each approach are summarized in this article, emphasizing the use of factor analysis in developing and refining clinical measures for assessing the invariance of measures across samples and for evaluating multitrait-multimethod data.