Development, testing, and validation of a patient satisfaction questionnaire for use in the clinical genetics setting.

Patient satisfaction is an important component of assessing quality of care. The purpose of this study is to develop a concise patient satisfaction tool specifically for use in the clinical genetics setting. An international survey identified two domains, "Respect Given" and "Patient Questions Answered" as being important components of satisfaction in the genetic encounter. A working group of professionals assembled a 14-question pilot questionnaire that was subsequently tested in 13 clinical sites. Nearly 400 responses were used to validate the tool and ultimately construct a 7-item questionnaire. The 7-item questionnaire was found to be reliable and valid and addresses two key components of patient satisfaction: technical aspects of care and interpersonal relations. The tool is compared to other patient satisfaction tools developed for use in the clinical genetics setting. A Spanish version is also provided.

Identification and prioritization of quality indicators in clinical genetics: an international survey.

The range and demand for clinical genetic services will continue to grow, and now is an ideal time to assess current service quality. Based on the previous work of quality professional organizations such as the Institute of Medicine (IOM) and The Joint Commission on the Accreditation of Healthcare Organizations (JCAHO) which is now known as The Joint Commission (TJC), an independent group of genetic and healthcare quality professionals (InheritQual) drafted and defined a list of potential quality indicators for clinical genetics. Perspectives on the appropriateness and the practicality of each indicator were surveyed and analyzed. The Quality Special Interest Group of the American College of Medical Genetics (ACMG) chartered the survey results. After measuring the degree of consensus, an expert panel was selected to review the quality indicators based on practicality and applicability. This expert panel comprised of members of the ACMG Quality Sig workgroup met for final consensus and developed a methodology to pilot these indicators.

Testing a conceptual framework for diabetes self-care management.

Diabetes is a major source of morbidity, mortality, and economic expense in the United States. The majority of researchers and clinicians believe that diabetes is a self-care management disease, and that patients should be reliable, capable, and sufficiently responsible to take care of themselves. However, individuals with diabetes may or may not have diabetes knowledge, social support, self-care agency (an individual's capability to perform self-care actions), and self-efficacy (an individual's beliefs in his or her capability to perform self-care actions) that would help them to engage in diabetes self-care management. Therefore, this study examined the relationship among those factors using a cross-sectional model testing design. A convenient sample of 141 insulin-requiring individuals with either diabetes type 1 or type 2, 21 years old and over, was recruited from an outpatient diabetes care center located in a Southeast region of the United States. Simple linear regression, multiple standard regression, and multiple hierarchical regression were used to analyze the data. Individuals with greater diabetes knowledge had greater self-care agency and self-efficacy. Those with a higher score in social support had greater self-care agency and better diabetes self-care management, and those with greater self-efficacy had better diabetes self-care management. In addition, self-care agency mediated the effects of diabetes knowledge on self-efficacy and the effects of social support on diabetes self-care management. Self-efficacy mediated the effects of self-care agency on diabetes self-care management. Furthermore, the linear combination of diabetes knowledge, social support, self-care agency, and self-efficacy, taken together, positively affected diabetes self-care management. Enhancing an individual's diabetes knowledge, social support, self-care agency, and self-efficacy may be a strategy which can promote better engagement in diabetes self-care.