Consumer contribution to the delivery of genetic health services

• Published in: American journal of medical genetics. Part A 2008-09, Vol.146A (17), p.2266-2274
• Main Authors: Nisselle, Amy, Forbes, Robin, Bankier, Agnes, Hughes, Eilís, Aitken, MaryAnne
• Format: Article
• Language: English
• Subjects: Adolescent; Adult; Biological and medical sciences; Community Participation; consumer; Consumer Behavior; Delivery. Postpartum. Lactation; Female; Genetic Services - standards; genetics; Gynecology. Andrology. Obstetrics; health service; Health Services Research; Humans; Male; Medical genetics; Medical sciences; Middle Aged; Quality of Health Care - standards; satisfaction; survey; Surveys and Questionnaires; Victoria
• ISSN: 1552-4825; 1552-4833
• DOI: 10.1002/ajmg.a.32271

Clinical genetics services have been the focus of evaluation and guidelines since the 1970s. In this study we used consumer satisfaction as the evaluative measure with the aim being to seek feedback from consumers of a genetics service to inform quality measures for client‐centered genetic services. In the first phase of the study issues were identified by consumers and health professionals around delivering genetics services and the priorities ranked into five themes: expectations, information, respect, privacy and logistics. These themes then formed the basis of a questionnaire that was distributed to consumers of a genetics service in Victoria, Australia. Three hundred ninety‐seven out of 821 questionnaires were completed (49.8% response rate). More than 85% of consumers were satisfied in the theme of expectations, with the only issue being waiting times for genetic test results (68.6% satisfied). Over 83% of consumers were satisfied with the information received from the genetics service. The matter of interruptions during appointments was the only area in the theme of respect that rated less than 80% satisfactory (79.1%). In relation to privacy, consumers rated over 95% satisfaction. Logistics was the theme where satisfaction was lowest with ratings of less than 75% for issues such as availability of public transport to the clinic, parking and wheelchair access. Consumer satisfaction was related to the information received before and after consultations and also to the attitudes and behaviors of health professionals. These findings have implications for genetics services both in Australia and internationally and recommendations from the findings are outlined. © 2008 Wiley‐Liss, Inc.