Patient Empowerment in Clinical Genetics Services

TLDR

Outcome measurement in clinical genetics is problematic because patient benefits are hard to quantify, and empowerment—akin to perceived personal control—has been developed as a related metric. The study aimed to develop a theoretical framework describing patient benefits from clinical genetics services. The authors conducted seven focus groups and 19 interviews with patients, patient group representatives, and health professionals. Analysis produced an empowerment model summarizing patient benefits, noting that empowerment also covers benefits for at‑risk relatives and future generations beyond perceived personal control.

Abstract

Outcome measurement in clinical genetics is problematic because the patient benefits are difficult to measure. The aim in this qualitative grounded theory study was to develop a theoretical framework describing the patient benefits from using clinical genetics services. Seven focus groups and 19 interviews were conducted with patients, patient group representatives, and health professionals. Data analysis resulted in construction of a model of empowerment summarizing the patient benefits from using clinical genetics services. Empowerment is similar to the concept of perceived personal control (PPC), and a measure of PPC has been developed for use in evaluations of clinical genetics services. However, empowerment includes some benefits not captured by PPC related to empowerment of other at risk relatives, and future generations.