Patient empowerment in long-term conditions: development and preliminary testing of a new measure

Nicola Small,Carolyn A Chew-Graham,Peter Bower,Diane Whalley,Joanne Protheroe

doi:10.1186/1472-6963-13-263

Abstract

BackgroundPatient empowerment is viewed by policy makers and health care practitioners as a mechanism to help patients with long-term conditions better manage their health and achieve better outcomes. However, assessing the role of empowerment is dependent on effective measures of empowerment. Although many measures of empowerment exist, no measure has been developed specifically for patients with long-term conditions in the primary care setting. This study presents preliminary data on the development and validation of such a measure.MethodsWe conducted two empirical studies. Study one was an interview study to understand empowerment from the perspective of patients living with long-term conditions. Qualitative analysis identified dimensions of empowerment, and the qualitative data were used to generate items relating to these dimensions. Study two was a cross-sectional postal study involving patients with different types of long-term conditions recruited from general practices. The survey was conducted to test and validate our new measure of empowerment. Factor analysis and regression were performed to test scale structure, internal consistency and construct validity.ResultsSixteen predominately elderly patients with different types of long-term conditions described empowerment in terms of 5 dimensions (identity, knowledge and understanding, personal control, personal decision-making, and enabling other patients). One hundred and ninety seven survey responses were received from mainly older white females, with relatively low levels of formal education, with the majority retired from paid work. Almost half of the sample reported cardiovascular, joint or diabetes long-term conditions. Factor analysis identified a three factor solution (positive attitude and sense of control, knowledge and confidence in decision making and enabling others), although the structure lacked clarity. A total empowerment score across all items showed acceptable levels of internal consistency and relationships with other measures were generally supportive of its construct validity.ConclusionInitial analyses suggest that the new empowerment measure meets basic psychometric criteria. Reasons concerning the failure to confirm the hypothesized factor structure are discussed alongside further developments of the scale.

Highlights

Patient empowerment is viewed by policy makers and health care practitioners as a mechanism to help patients with long-term conditions better manage their health and achieve better outcomes
The aim of this paper is to report on two empirical studies conducted to understand and measure empowerment in patients with long-term conditions in primary care
3 participants had asthma; and 4 participants had either chronic obstructive pulmonary disease (COPD); a lung transplant; emphysema; and silicosis

Summary

Introduction

Patient empowerment is viewed by policy makers and health care practitioners as a mechanism to help patients with long-term conditions better manage their health and achieve better outcomes. A key feature of current health policy is the focus on long-term conditions (a term used interchangeably with ‘chronic conditions’). These are defined as conditions ‘that cannot be cured but can be managed through medication and/or therapy’ [1]. Policy concerning the management of long-term conditions gives high priority to active patient participation in delivery of health care, and to the importance of self-management [2]. Participation in health care has been defined as ‘an interaction, or series of interactions between a patient and the healthcare system or health care professional in which the patient is active in providing information to aid diagnosis and problem-solving, sharing his/her preferences and priorities for treatment or management, asking questions and/or contributing to the identification of management approaches that best suit his/her needs, preferences or priorities’ [3]. Self-management has been defined as ‘the care taken by individuals towards their own health and well-being: it comprises the actions they take to lead a healthy lifestyle; to meet their social, emotional and psychological needs; to care for their long-term condition; and to prevent further illness or accidents’ [1].

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Discussion

Conclusion