Empowerment: qualitative underpinning of a new clinical genetics-specific patient-reported outcome

Recent qualitative research developed a new construct labelled Empowerment describing a new patient outcome from using clinical genetics services that included four dimensions: Knowledge and Understanding, Decision-Making, Instrumentality and Future-Orientation. The aim of this study was to explore the validity, relevance and importance of the Empowerment construct for use as a patient-reported outcome (PRO) for clinical genetics services, and to refine the construct if necessary. Qualitative research (interviews and focus groups) was conducted in the UK with 12 patients, 15 representatives from patient support groups, 10 genetics clinicians and 4 service commissioners. Participants were asked to (1) describe what they think are the patient benefits from using clinical genetics services and (2) critique the Empowerment construct as a PRO. Interviews and focus groups were transcribed in full and analyzed using grounded theory. Findings confirmed the relevance and importance of the Empowerment construct, and identified Emotional Regulation as a further dimension of Empowerment. Data analysis also resulted in refinement of the construct, by renaming the other four dimensions to be Cognitive Control, Decisional Control, Behavioural Control and Hope. Empowerment has the potential to be a useful PRO to evaluate interventions in clinical genetics, and for use in clinical practice to generate data for continuous quality improvement. A study is underway to operationalise Empowerment by developing a psychometrically sound PRO measure that will take the form of a short questionnaire.