Rethinking the patient: using Burden of Treatment Theory to understand the changing dynamics of illness

<b>Background</b> In this article we outline Burden of Treatment Theory, a new model of the relationship between sick people, their social networks, and healthcare services. Health services face the challenge of growing populations with long-term and life-limiting conditions, they have responded to this by delegating to sick people and their networks routine work aimed at managing symptoms, and at retarding - and sometimes preventing - disease progression. This is the new proactive work of patient-hood for which patients are increasingly accountable: founded on ideas about self-care, self-empowerment, and self-actualization, and on new technologies and treatment modalities which can be shifted from the clinic into the community. These place new demands on sick people, which they may experience as burdens of treatment.<p></p> <b>Discussion</b> As the burdens accumulate some patients are overwhelmed, and the consequences are likely to be poor healthcare outcomes for individual patients, increasing strain on caregivers, and rising demand and costs of healthcare services. In the face of these challenges we need to better understand the resources that patients draw upon as they respond to the demands of both burdens of illness and burdens of treatment, and the ways that resources interact with healthcare utilization.<p></p> <b>Summary</b> Burden of Treatment Theory is oriented to understanding how capacity for action interacts with the work that stems from healthcare. Burden of Treatment Theory is a structural model that focuses on the work that patients and their networks do. It thus helps us understand variations in healthcare utilization and adherence in different healthcare settings and clinical contexts

Patient and public involvement in designing and conducting doctoral research: the whys and the hows

YesPublic and patient involvement (PPI) has been shown to have a positive impact on health and social care research. However, adequate examples describing how to operationalise effective PPI, especially in doctoral studies, are lacking. Hence, doctoral researchers new to research, or those with limited experience, can be discouraged from facilitating PPI in their research. This paper aims to describe and discuss in detail the approaches used by four doctoral researchers to incorporate PPI at different stages of their research studies from study design to disseminating findings. We aim to inform other doctoral researchers about the challenges and limitations relating to PPI that we faced. Through these, we share pragmatic recommendations for facilitating PPI during doctoral studies. The description of four case studies demonstrated that PPI could be incorporated at various stages during doctoral research. This has had a beneficial impact on our research study progression, researcher self-esteem and lastly, helped alleviate researcher isolation during doctoral studies.Supported by Research Design Service Yorkshire and the Humber (RDSYH), the National Institute for Health Research (NIHR) Yorkshire and Humber Patient Safety Translational Research Centre (NIHR Yorkshire and Humber PSTRC). This paper presents independent research funded by NIHR under its Research for Patient Benefit (RfPB) Programme (Grant Reference Number PB-PG-0317-20010).Research Development Fund Publication Prize Award winner, July 2019

Power to the people: To what extent has public involvement in applied health research achieved this?

Public involvement in applied health research is a pre-requisite for funding from many funding bodies. In particular the National Institute of Health Research (NIHR) in the UK, clearly states that it values lay knowledge and there is an expectation that members of the public will participate as research partners in research. As a result a large public involvement infrastructure has emerged to facilitate this. However, there is concern that despite the flurry of activity in promoting public involvement, lay knowledge is marginalised and has limited impact on research decision-making. This article asks to what extent has power shifted from the scientific research community to the public? It discusses the meaning of power and models of public involvement and examines the development of public involvement in applied health research. It identifies public involvement in a range of decision-making: identifying priority areas for commissioning research; making decisions about which projects are funded; decisions about details of research design. Whilst there is evidence that the public voice is present in the composition of research proposals submitted to NIHR and in the decision-making about which projects are funded and how they are carried out, there is less evidence of a change in the power dynamic manifest in social relations between the scientific research community and the public. As a result the biomedical model remains dominant and largely unchallenged in research decision-making

Uncovering treatment burden as a key concept for stroke care: a systematic review of qualitative research

<b>Background</b> Patients with chronic disease may experience complicated management plans requiring significant personal investment. This has been termed ‘treatment burden’ and has been associated with unfavourable outcomes. The aim of this systematic review is to examine the qualitative literature on treatment burden in stroke from the patient perspective.<p></p> <b>Methods and findings</b> The search strategy centred on: stroke, treatment burden, patient experience, and qualitative methods. We searched: Scopus, CINAHL, Embase, Medline, and PsycINFO. We tracked references, footnotes, and citations. Restrictions included: English language, date of publication January 2000 until February 2013. Two reviewers independently carried out the following: paper screening, data extraction, and data analysis. Data were analysed using framework synthesis, as informed by Normalization Process Theory. Sixty-nine papers were included. Treatment burden includes: (1) making sense of stroke management and planning care, (2) interacting with others, (3) enacting management strategies, and (4) reflecting on management. Health care is fragmented, with poor communication between patient and health care providers. Patients report inadequate information provision. Inpatient care is unsatisfactory, with a perceived lack of empathy from professionals and a shortage of stimulating activities on the ward. Discharge services are poorly coordinated, and accessing health and social care in the community is difficult. The study has potential limitations because it was restricted to studies published in English only and data from low-income countries were scarce.<p></p> <b>Conclusions</b> Stroke management is extremely demanding for patients, and treatment burden is influenced by micro and macro organisation of health services. Knowledge deficits mean patients are ill equipped to organise their care and develop coping strategies, making adherence less likely. There is a need to transform the approach to care provision so that services are configured to prioritise patient needs rather than those of health care systems

What does 'complex' mean in palliative care? Triangulating qualitative findings from 3 settings

Background: Complex need for patients with a terminal illness distinguishes those who would benefit from specialist palliative care from those who could be cared for by non-specialists. However, the nature of this complexity is not well defined or understood. This study describes how health professionals, from three distinct settings in the United Kingdom, understand complex need in palliative care. Methods: Semi-structured qualitative interviews were conducted with professionals in primary care, hospital and hospice settings. Thirty-four professionals including doctors, nurses and allied health professionals were recruited in total. Data collected in each setting were thematically analysed and a workshop was convened to compare and contrast findings across settings. Results: The interaction between diverse multi-dimensional aspects of need, existing co-morbidities, intractable symptoms and complicated social and psychological issues increased perceived complexity. Poor communication between patients and their clinicians contributed to complexity. Professionals in primary and acute care described themselves as ‘generalists’ and felt they lacked confidence and skill in identifying and caring for complex patients and time for professional development in palliative care. Conclusions: Complexity in the context of palliative care can be inherent to the patient or perceived by health professionals. Lack of confidence, time constraints and bed pressures contribute to perceived complexity, but are amenable to change by training in identifying, prognosticating for, and communicating with patients approaching the end of life

Living with, managing and minimising treatment burden in long term conditions: a systematic review of qualitative research.

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 FINDINGS: The 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. CONCLUSIONS: Treatments 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

The contribution of risk factors to socioeconomic inequalities in multimorbidity across the lifecourse: a longitudinal analysis of the Twenty-07 cohort

Background: Multimorbidity is a major challenge to health systems globally and disproportionately affects socioeconomically disadvantaged populations. We examined socioeconomic inequalities in developing multimorbidity across the lifecourse and investigated the contribution of five behaviour-related risk factors. Methods: The Twenty-07 study recruited participants aged approximately 15, 35, and 55 years in 1987 and followed them up over 20 years. The primary outcome was development of multimorbidity (2+ health conditions). The relationship between five different risk factors (smoking, alcohol consumption, diet, body mass index (BMI), physical activity) and the development of multimorbidity was assessed. Social patterning in the development of multimorbidity based on two measures of socioeconomic status (area-based deprivation and household income) was then determined, followed by investigation of potential mediation by the five risk factors. Multilevel logistic regression models and predictive margins were used for statistical analyses. Socioeconomic inequalities in multimorbidity were quantified using relative indices of inequality and attenuation assessed through addition of risk factors. Results: Multimorbidity prevalence increased markedly in all cohorts over the 20 years. Socioeconomic disadvantage was associated with increased risk of developing multimorbidity (most vs least deprived areas: odds ratio (OR) 1.46, 95% confidence interval (CI) 1.26–1.68), and the risk was at least as great when assessed by income (OR 1.53, 95% CI 1.25–1.87) or when defining multimorbidity as 3+ conditions. Smoking (current vs never OR 1.56, 1.36–1.78), diet (no fruit/vegetable consumption in previous week vs consumption every day OR 1.57, 95% CI 1.33–1.84), and BMI (morbidly obese vs healthy weight OR 1.88, 95% CI 1.42–2.49) were strong independent predictors of developing multimorbidity. A dose–response relationship was observed with number of risk factors and subsequent multimorbidity (3+ risk factors vs none OR 1.91, 95% CI 1.57–2.33). However, the five risk factors combined explained only 40.8% of socioeconomic inequalities in multimorbidity development. Conclusions: Preventive measures addressing known risk factors, particularly obesity and smoking, could reduce the future multimorbidity burden. However, major socioeconomic inequalities in the development of multimorbidity exist even after taking account of known risk factors. Tackling social determinants of health, including holistic health and social care, is necessary if the rising burden of multimorbidity in disadvantaged populations is to be redressed