Patient involvement in diabetes decision-making: theory and measurement

Providers are encouraged to view patients with chronic disease as ‘partners’ in their care, and to collaborate with them in developing care plans. Yet there is little guidance in how collaboration should occur, and little evidence that collaborative care improves patient outcomes. Related models and measures of patient centred care and shared decision making have not been developed specifically for the context of chronic disease care. This thesis aimed to develop a theoretical understanding of how providers and patients make decisions in chronic disease care planning, how patients experience involvement in care planning, and to develop a measure of patient involvement. It consists of two studies: a qualitative study to develop a grounded theory of decision-making in diabetes care planning, and a scale development and psychometrics study. The qualitative study involved 29 providers and 16 patients with diabetes. It found that providers were concerned with a process described as ‘managing patient involvement to do the right thing’, while patients were concerned with ‘being involved to make sure care is appropriate’. This led to the theory of ‘delivering respectful care’, a grounded theory that integrates provider and patient perspectives by showing how providers and patients can resolve their concerns while achieving mutually acceptable outcomes. Central to this theory is the process of finding common ground, while the key conditions are provider responsiveness and an ongoing, trusting and respectful provider-patient relationship.The Collaborative Care Planning Scale (CCPS), based on these findings, is a patient self-report scale that measures patients’ perceptions of involvement in care planning. After piloting the CCPS was tested amongst 166 patients with diabetes. Exploratory factor analysis resulted in a 27-item scale comprising two factors: ‘receiving appropriately personalised care’ and ‘feeling actively involved in decision-making’. Psychometrics tests revealed the CCPS has adequate internal consistency and test-retest reliability, and findings support construct validity.‘Delivering respectful care’ enriches understanding of the nature of collaboration in chronic disease care, and identifies those elements necessary to ensure patients receive best possible care. The CCPS provides the means for measuring what patients say they value, and is thus an important measure of quality chronic disease care