Many patients with complex chronic illnesses are overburdened by their treatment, according to a paper published on bmj.com today.
The authors argue that some of these problems are induced by healthcare systems themselves and that, to be effective, care must be less disruptive to the daily lives of patients.
Chronic disease is the great epidemic of our times, but the strategies we have developed to manage it have created a growing burden for patients, write Professors Carl May, Victor Montori, and Frances Mair. This treatment burden leads to poor adherence, wasted resources, and poor outcomes.
For example, they describe a man being treated for heart failure in UK primary care who rejected the offer to attend a specialist heart failure clinic to optimise management of his condition. He stated that in the previous two years he had spent the equivalent of one full day every two weeks making 54 visits to specialist clinics for consultant appointments, diagnostic tests, and treatment.
Against this background, they call for minimally disruptive medicine that seeks to tailor treatment regimens to the realities of the daily lives of patients. Such an approach could greatly improve the care and quality of life for patients.
The work of being a patient includes much more than drug management and self monitoring, they explain. It includes organising doctors' visits and laboratory tests. Patients may also need to take on the organisational work of passing basic information about their care between different healthcare providers and professionals. And in some countries, they must also take on the contending demands of insurance and welfare agencies.
Patients are thus overwhelmed not just by the burden of illness, but by the ever present and expanding burden of treatment, say the authors.
Furthermore, some of these problems are induced by healthcare systems themselves, and clinicians don't have the tools to respond adequately to this problem.
They suggest that clinicians and researchers need reliable tools to identify overburdened patients. They also call for a shift towards improved coordination of care and the development of clinical guidelines for managing multiple chronic conditions.
They also argue that patients and their caregivers must play a central role in improving the coordination of their care.
"We need to think more about the burdens of treatment," conclude the authors. "Thinking seriously about the burden of treatment may help us begin to think about minimally disruptive medicine - forms of effective treatment and service provision that are designed to reduce the burden of treatment on their users."