Measuring self-care. A description of the family of disease-specific and generic instruments based on the theory of self-care of chronic illness

Background In recent years, there has been an exponential increase in attention paid to the patient-reported outcome of self-care. Many investigators have used one of the families of self-care instruments freely available on the website www.self-care-measures.com. These self-care measures have been translated into many languages, which are also available on the website. The measures include both disease-specific and generic instruments, which are based on a common theoretical framework, the Middle Range Theory of Self-Care of Chronic Illness. Purpose The purpose of this article is to illustrate similarities among the instruments and to standardize their scoring, analysis, and use. We describe the Self-Care of Heart Failure Index, the Self-Care of Coronary Heart Disease Inventory, the Self-Care of Hypertension Inventory, the Self-Care of Diabetes Inventory, the Self-Care of Chronic Obstructive Pulmonary Disease Inventory, the Self-Care of Chronic Illness Inventory, and the Self-Care Inventory. Detailed guidance on scoring, translation, and analysis is provided. Complementary measures of self-care self-efficacy and those used to measure caregiver contributions to patient self-care are briefly described. Conclusions Many of the common questions of instrument users are answered in this article. Following this guidance will facilitate consistent use of the instruments, which will enable users to compare their results to those of others worldwide and facilitate future reviews and meta-analyses. Clinical Implications This review, emphasizing standard scoring and interpretation, is useful for clinicians and researchers across various populations and settings.