Patients with HIV report having little involvement in their care decisions, but many also report feeling too poorly educated about the options to want the choice.
Shared decision making is a key component to the patient-centered medical home, yet little research has been done to explore shared decision making-and the barriers to it-in HIV management and care.
“It is important to understand that for any one patient, his or her interest in developing collaborative care plans can change over time and may vary for different health conditions,” said Shannon Fuller, MS, a research analyst at the University of California, San Francisco Center for AIDS Prevention Studies and lead author of a new report on shared decision-making in HIV/AIDS patients.
The study reveals that while there are many opportunities for shared decision making due to the technical advances in HIV care, few participants reported feeling as if they had a role in deciding their care.
“In our study, we spoke with a number of patients who had been living with HIV for more than a decade. According to their own reports, their HIV was well-managed and they expressed greater concern for other co-morbidities such as diabetes and neuropathy,” Fuller told Medical Economics. “It may sound strange, but many patients in our study did not feel that there were a lot of choices that could be made in terms of HIV care.”
The biggest choices that patients endorsed, she said, was whether or not to take antiretroviral treatment, and then which medications to take. Patients didn’t feel, however, that they knew enough about the medication options to make this decision well, choosing often to defer this decision to their medical provider, according to the study.
Fuller told the story of one participant in the study who likened the process of choosing between two anti-retroviral treatments to selecting between two pills of different colors. From his perspective, both pills would manage HIV and thus both were good options. Any differences between them were technical and nuanced, and something he believed that a provider would understand better, she said.
“Given that many patients feel similarly when it comes to decisions about their HIV medications, it may be productive for providers to engage patients in more comprehensive care planning that encompasses all of the health issues a person is facing, and addresses strategies for medication adherence,” Fuller said. “Doing so allows patients to take a more active role in planning for the aspects of care where they feel they have the most to offer.”
Fuller said she hopes her study will encourage primary care physicians to engage HIV/AIDS in a more active level of decision making. Patients may be used to physicians taking the role in their care, but with a little effort, primary care physicians can help patients understand why they should become more involved in their care and help them get more comfortable with the process.
“The medical community could promote shared decision making by building capacity in primary care clinics to support this activity, and by enhancing patient awareness about the goals of shared decision making,” Fuller said. “Our findings suggest that engaging patients in shared decision making takes time-patients need to understand the purpose of the activity and need to feel that they have sufficient medical insight in order to make confident decisions about their care plans.”