Understanding Patients' Experiences of Treatment Burden in Chronic Heart Failure Using Normalization Process Theory

Abstract

PURPOSE Our goal was to assess the burden associated with treatment among patients living with chronic heart failure and to determine whether Normalization Process Theory (NPT) is a useful framework to help describe the components of treatment burden in these patients. METHODSWe performed a secondary analysis of qualitative interview data, using framework analysis, informed by NPT, to determine the components of patient "work." Participants were 47 patients with chronic heart failure managed in primary care in the United Kingdom who had participated in an earlier qualitative study about living with this condition. We identifi ed and examined data that fell outside of the coding frame to determine if important concepts or ideas were being missed by using the chosen theoretical framework. RESULTSWe were able to identify and describe components of treatment burden as distinct from illness burden using the framework. Treatment burden in chronic heart failure includes the work of developing an understanding of treatments, interacting with others to organize care, attending appointments, taking medications, enacting lifestyle measures, and appraising treatments. Factors that patients reported as increasing treatment burden included too many medications and appointments, barriers to accessing services, fragmented and poorly organized care, lack of continuity, and inadequate communication between health professionals. Patient "work" that fell outside of the coding frame was exclusively emotional or spiritual in nature.CONCLUSIONS We identifi ed core components of treatment burden as reported by patients with chronic heart failure. The fi ndings suggest that NPT is a theoretical framework that facilitates understanding of experiences of health care work at the individual, as well as the organizational, level. Although further exploration and patient endorsement are necessary, our fi ndings lay the foundation for a new target for treatment and quality improvement efforts toward patientcentered care.

A Look at Person-Centered and Family-Centered Care Among Older Adults: Results from a National Survey

“…The clinical relevance of treatment burden has been established for consequential outcomes such as adherence to prescribed treatments, quality of life, and health services utilization. 13,22,[36][37][38] That aspects of burden associated with managing health was more commonly experienced by persons in worse health underscores the practical importance of incorporating individual perspectives and preferences in prioritization of possible treatment and preventive regimens by balancing evidence of clinical benefit with minimizing burdens. [39][40][41] Current delivery and reimbursement structures fail to support providers' ability to comprehensively deliberate with patients about the risks and benefits of alternative treatment options and preventive strategies.…”

“…Questions to assess health care decision-making preferences and treatment burden were developed based on existing literature, and were devised for broad population relevance and feasible administration within a national survey. This emphasis varies from the prevailing evidence base that has focused on decision-making preferences and experiences of care with a specific health condition, 13,22,38 clinical situation, 36,37 or medical encounter, 14,28 although measures to ascertain these constructs are evolving. 2,49,50 Study findings are limited to older adults' perspectives, and do not encompass perspectives of family members and close friends who may share or assume responsibility for management of health care activities.…”

Palliative care in heart failure: facts and numbers

“…In addition, patients describe professionally driven healthcare services that focus on delivering guideline‐based medical treatment. This is sometimes burdensome in itself, and there is often poor co‐ordination and a lack of continuity of care 16, 21, 22. Heart failure management programmes have been developed in several countries to address many of these issues.…”

Heart Failure Virtual Consultation: bridging the gap of heart failure care in the community ‐ A mixed‐methods evaluation

“…Present communication paths, predominantly offline, and often by referral letter necessitating an outpatient review do not allow easy communication between professionals and can lead to disjointed care. For example, one study demonstrated that HF patients reported too many medications and appointments, barriers to accessing services, fragmented and poorly organized care, lack of continuity, and inadequate communication between health professionals as components to treatment burden that they experienced 10. Optimal and timely communication between GPs and cardiologists can help ensure that appropriate care is provided and reduce many of these elements of treatment burden.…”