Living With, Managing and Minimising Treatment Burden in Long Term Conditions: A Systematic Review of Qualitative Research

Abstract

Background‘Treatment burden’, defined as both the workload and impact of treatment regimens on function and well-being, has been associated with poor adherence and unfavourable outcomes. Previous research focused on treatment workload but our understanding of treatment impact is limited. This research aimed to systematically review qualitative research to identify: 1) what are the treatment generated disruptions experienced by patients across all chronic conditions and treatments? 2) what strategies do patients employ to minimise these treatment generated disruptions?Methods and FindingsThe search strategy centred on: treatment burden and qualitative methods. Medline, CINAHL, Embase, and PsychINFO were searched electronically from inception to Dec 2013. No language limitations were set. Teams of two reviewers independently conducted paper screening, data extraction, and data analysis. Data were analysed using framework synthesis informed by Cumulative Complexity Model. Eleven papers reporting data from 294 patients, across a range of conditions, age groups and nationalities were included. Treatment burdens were experienced as a series of disruptions: biographical disruptions involved loss of freedom and independence, restriction of meaningful activities, negative emotions and stigma; relational disruptions included strained family and social relationships and feeling isolated; and, biological disruptions involved physical side-effects. Patients employed “adaptive treatment work” and “rationalised non-adherence” to minimise treatment disruptions. Rationalised non-adherence was sanctioned by health professionals at end of life; at other times it was a “secret-act” which generated feelings of guilt and impacted on family and clinical relationships.ConclusionsTreatments generate negative emotions and physical side effects, strain relationships and affect identity. Patients minimise these disruptions through additional adaptive work and/or by non-adherence. This affects physical outcomes and care relationships. There is a need for clinicians to engage with patients in honest conversations about treatment disruptions and the ‘adhere-ability’ of recommended regimens. Patient-centred practice requires management plans which optimise outcomes and minimise disruptions.

Healthcare organisation and delivery for people with dementia and comorbidity: a qualitative study exploring the views of patients, carers and professionals

“…There is a need for approaches to care that recognise that families are often crucial allies for quality and safety and should, subject to patient agreement, be routinely involved in decision-making for PLWD and comorbidity 28. Such approaches, however, need to incorporate consideration of the capacity of patients and their family carers to attend to current and future healthcare demands, and the support needs of the family carer 29. Participants in our study ranged from those who were able to self-manage their condition and navigate health and social care systems with minimal support to those who required extensive support, often provided by family carers.…”

Patient experiences of the burden of using medicines for long-term conditions and factors affecting burden: A cross-sectional survey

“…Lack of autonomy/flexibility to vary regimens may not perceived as a burden by many, but for some the effort of maintaining strict adherence to prescribed regimens may represent loss of independence, freedom and/or spontaneity (Demain et al, ). Encouraging autonomy in fitting medicines around daily lives without loss of clinical benefit may reduce perceived medicine burden and encourage persistence with long‐term medicines (Mohammed et al, ; Ridgeway et al, ).…”

Patient-perceived treatment burden of chronic obstructive pulmonary disease

“…Treatment burden can be defined as the workload and impact of health care regimens on patient functioning and well-being, separate to that caused directly by disease 1. For many chronic conditions, managing an illness requires an investment of a significant amount of time and effort from the patient, their family, or carers.…”