Katie Gallacher

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

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. METHODS We 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 identified 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. RESULTS We 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 identified core components of treatment burden as reported by patients with chronic heart failure. The findings 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 findings lay the foundation for a new target for treatment and quality improvement efforts toward patient-centered care.

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

BackgroundIn 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.DiscussionAs 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.SummaryBurden 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.

Qualitative systematic reviews of treatment burden in stroke, heart failure and diabetes - Methodological challenges and solutions

BackgroundTreatment burden can be defined as the self-care practices that patients with chronic illness must perform to respond to the requirements of their healthcare providers, as well as the impact that these practices have on patient functioning and well being. Increasing levels of treatment burden may lead to suboptimal adherence and negative outcomes. Systematic review of the qualitative literature is a useful method for exploring the patient experience of care, in this case the experience of treatment burden. There is no consensus on methods for qualitative systematic review. This paper describes the methodology used for qualitative systematic reviews of the treatment burdens identified in three different common chronic conditions, using stroke as our exemplar.MethodsQualitative studies in peer reviewed journals seeking to understand the patient experience of stroke management were sought. Limitations of English language and year of publication 2000 onwards were set. An exhaustive search strategy was employed, consisting of a scoping search, database searches (Scopus, CINAHL, Embase, Medline & PsycINFO) and reference, footnote and citation searching. Papers were screened, data extracted, quality appraised and analysed by two individuals, with a third party for disagreements. Data analysis was carried out using a coding framework underpinned by Normalization Process Theory (NPT).ResultsA total of 4364 papers were identified, 54 were included in the review. Of these, 51 (94%) were retrieved from our database search. Methodological issues included: creating an appropriate search strategy; investigating a topic not previously conceptualised; sorting through irrelevant data within papers; the quality appraisal of qualitative research; and the use of NPT as a novel method of data analysis, shown to be a useful method for the purposes of this review.ConclusionThe creation of our search strategy may be of particular interest to other researchers carrying out synthesis of qualitative studies. Importantly, the successful use of NPT to inform a coding frame for data analysis involving qualitative data that describes processes relating to self management highlights the potential of a new method for analyses of qualitative data within systematic reviews.

Randomised controlled trial of azithromycin in smokers with asthma

To the Editor: Smokers with asthma have poor symptom control, accelerated decline in lung function and an attenuated response to corticosteroids compared to nonsmokers with asthma [1]. There is an unmet need for alternative or additional drugs for smokers with asthma who are unable to stop smoking [2]. Macrolide antibiotics have anti-inflammatory activity [3] and in clinical studies there is good evidence for efficacy in the treatment of diffuse pan-bronchiolitis and cystic fibrosis, as well as in preventing chronic rejection after lung transplantation [4, 5]. In asthma, chronic treatment is associated with a reduction in bronchial hyperreactivity in mild-to-moderate asthma [6] and in exacerbation rates in non-eosinophilic severe asthma [7]. To date, no studies have examined the efficacy of macrolide antibiotics exclusively in current smokers with asthma. A randomised double-blind parallel-group trial compared azithromycin, 250 mg per day, with placebo for 12 weeks. All subjects were aged 18–70 years, were current smokers (≥5 pack-years history) with chronic asthma (>1 year duration; defined by international criteria [8]) and had to be free of exacerbation and respiratory tract infection for a minimum 6-week period prior to randomisation. A baseline visit was performed following a 4-week run-in period on inhaled corticosteroid (ICS) therapy equivalent to 400 μg beclometasone ± a long-acting β2-agonist (LABA). Ethical approval was obtained and all subjects provided written informed consent. Study visits were performed at 4, 8 and 12 weeks. Clinic visit peak expiratory flow (PEF) after 12 weeks treatment was the primary outcome measure. A sample size of 68 …

Minimally disruptive medicine: the evidence and conceptual progress supporting a new era of healthcare

Patients with chronic conditions or multimorbidity, and often their caregivers, have to adjust their lives and mobilise their capacity (ability) to respond to the workload (demands) imposed by treatments and the care of their conditions. There is a continuous and complex interaction between workload and capacity. When capacity proves insufficient to address the treatment workload, creating a burden, patients may place a lower priority on other aspects of their lives, or reduce engagement with healthcare. Guidelines usually focus on disease-centred outcomes without consideration of limited capacity or demanding workload (burden) from treatment regimens. It seems reasonable to consider that healthcare needs reshaping so that care that pursues goals important to patients as well as those suggested by evidence-based medicine. This can be achieved by using shared decision approaches guided by the expertise of clinicians to deliver optimal care while minimising the burden of treatment on patients, their caregivers, and the healthcare system. What we need is minimally disruptive medicine.

Examining patterns of multimorbidity, polypharmacy and risk of adverse drug reactions in chronic obstructive pulmonary disease: a cross-sectional UK Biobank study.

Objective This study aims: (1) to describe the pattern and extent of multimorbidity and polypharmacy in UK Biobank participants with chronic obstructive pulmonary disease (COPD) and (2) to identify which comorbidities are associated with increased risk of adverse drug reactions (ADRs) resulting from polypharmacy. Design Cross-sectional. Setting Community cohort. Participants UK Biobank participants comparing self-reported COPD (n=8317) with no COPD (n=494 323). Outcomes Multimorbidity (≥4 conditions) and polypharmacy (≥5 medications) in participants with COPD versus those without. Risk of ADRs (taking ≥3 medications associated with falls, constipation, urinary retention, central nervous system (CNS) depression, bleeding or renal injury) in relation to the presence of COPD and individual comorbidities. Results Multimorbidity was more common in participants with COPD than those without (17% vs 4%). Polypharmacy was highly prevalent (52% with COPD taking ≥5 medications vs 18% in those without COPD). Adjusting for age, sex and socioeconomic status, those with COPD were significantly more likely than those without to be prescribed ≥3 medications contributing to falls (OR 2.27, 95% CI 2.13 to 2.42), constipation (OR 3.42, 95% CI 3.10 to 3.77), urinary retention (OR 3.38, 95% CI 2.94 to 3.87), CNS depression (OR 3.75, 95% CI 3.31 to 4.25), bleeding (OR 4.61, 95% CI 3.35 to 6.19) and renal injury (OR 2.22, 95% CI 1.86 to 2.62). Concomitant cardiovascular disease was associated with the greatest risk of taking ≥3 medications associated with falls/renal injury. Concomitant mental health conditions were most strongly associated with medications linked with CNS depression/urinary retention/bleeding. Conclusions Multimorbidity is common in COPD and associated with high levels of polypharmacy. Co-prescription of drugs with various ADRs is common. Future research should examine the effects on healthcare outcomes of co-prescribing multiple drugs with similar potential ADRs. Clinical guidelines should emphasise assessment of multimorbidity and ADR risk.

Multimorbidity and co-morbidity in atrial fibrillation and effects on survival: findings from UK Biobank cohort

Abstract Aims To examine the number and type of co-morbid long-term health conditions (LTCs) and their associations with all-cause mortality in an atrial fibrillation (AF) population. Methods and results Community cohort participants (UK Biobank n = 502 637) aged 37–73 years were recruited between 2006 and 2010. Self-reported LTCs (n = 42) identified in people with AF at baseline. All-cause mortality was available for a median follow-up of 7 years (interquartile range 76–93 months). Hazard ratios (HRs) examined associations between number and type of co-morbid LTC and all-cause mortality, adjusting for age, sex, socio-economic status, smoking, and anticoagulation status. Three thousand six hundred fifty-one participants (0.7% of the study population) reported AF; mean age was 61.9 years. The all-cause mortality rate was 6.7% (248 participants) at 7 years. Atrial fibrillation participants with ≥4 co-morbidities had a six-fold higher risk of mortality compared to participants without any LTC. Co-morbid heart failure was associated with higher risk of mortality [HR 2.96, 95% confidence interval (CI) 1.83–4.80], whereas the presence of co-morbid stroke did not have a significant association. Among non-cardiometabolic conditions, presence of chronic obstructive pulmonary disease (HR 3.31, 95% CI 2.14–5.11) and osteoporosis (HR 3.13, 95% CI 1.63–6.01) was associated with a higher risk of mortality. Conclusion Survival in middle-aged to older individuals with self-reported AF is strongly correlated with level of multimorbidity. This group should be targeted for interventions to optimize their management, which in turn may potentially reduce the impact of their co-morbidities on survival. Future AF clinical guidelines need to place greater emphasis on the issue of co-morbidity.

Multimorbidity: what next?

The Clinical Intelligence article1 provides a useful overview of the recent National Institute for Health and Care Excellence (NICE) guideline on multimorbidity.2 The guideline itself is important because it confirms the prevalence of multimorbidity, emphasises the need to take a person-centred, holistic approach to patient care, and provides guidance about key principles to consider when managing people with multimorbidity. However, there remain many gaps in the advice contained within the guideline, which reflect the deficiencies in our current understanding of multimorbidity. We know that multimorbidity is common, and is particularly problematic in those from deprived areas, but we still have no effective means of risk stratification. The current guideline highlights the issue of frailty as an important risk indicator; however, it also highlights that studies which examine frailty in younger populations are lacking. Our knowledge is currently insufficient about the problem of multimorbidity in young or middle-aged people or vulnerable populations, such as those with learning disabilities, serious mental health problems, addiction issues, or migrants. Although there is growing evidence of the adverse effects of multimorbidity on mortality,3 healthcare utilisation,4 and quality of life,5 we still do not fully understand which combinations of chronic disease are associated with the worst outcomes or greatest economic costs, and where best to target limited resources for greatest effect. There remain major gaps in our understanding of polypharmacy (the prescription of multiple medications) and any effects on health-related outcomes. We need to gain a greater understanding of the implications of polypharmacy in multimorbidity 6 …

063 Assessing treatment burden in chronic heart failure patients

Introduction Non-adherence is a well recognised avoidable precipitant of emergency admissions in chronic heart failure (CHF) patients. CHF patients often have multiple co-morbidities, each with complicated management plans. “Treatment burden” is the “work” undertaken by patients managing a chronic condition, and includes understanding treatments, engaging with others, taking complicated medication regimes, enacting lifestyle advice and attending hospital appointments. Our aim is develop an understanding of treatment burden in CHF patients, enabling us to identify points and types of intervention that would reduce non-adherence and potentially improve outcomes. Methods Secondary qualitative analysis of 46 interviews with CHF patients: 30 male; 20 female; aged between 45 and 88 years (mean age 73 yrs). Using normalisation process theory (NPT) as a coding framework, the data were categorised into the four NPT domains: coherence; cognitive participation; collective action; reflexive monitoring. Each of these domains has four subcategories as shown in Abstract 63 Table 1. Two researchers analysed all the transcripts and discussed any disagreements. Any dispute was resolved by a third party. Any data that fell outside of the NPT were noted. A taxonomy of “treatment” work was then created. Abstract 63 Table 1 Normalisation process theory COHERENCE (CO) “Sense making work” COGNITIVE PARTICIPATION (CP) “Relationship work” COLLECTIVE ACTION (CA) “Enacting work” REFLEXIVE MONITORING (RM) “Appraisal work” DIFFERENTIATION (CODI) Understanding and defining different treatments ENROLMENT (CPEN) Engaging with others about treatment SKILL SET WORKABILITY (CASW) Setting a routine for treatment RECONFIGURATION (RMRE) Altering a set routine of treatment as required COMMUNAL SPECIFICATION (COCS) Reaching an understanding of treatment with the help of others ACTIVATION (CPAC) Recruiting tasks to others to help with treatment CONTEXTUAL INTEGRATION (CACI) Adapting social circumstances to accommodate treatment COMMUNAL APPRAISAL (RMCA) Reviewing treatment with others with regards to change INDIVIDUAL SPECIFICATION (COIS) Reaching ones own understanding of treatments through reading etc INITIATION (CPIN) Using ones own organisational skills to arrange treatment INTERACTIONAL WORKABILITY (CAIW) Physical “work” eg, attending the doctor or taking medications INDIVIDUAL APPRAISAL (RMIA) Reviewing ones own treatment with regards to change INTERNALISATION (COIN) Relating ones experience to treatments e.g. when to seek help LEGITIMATION (CPLE) Seeking reassurance about treatment from others RELATIONAL INTEGRATION (CARI) Ones confidence in treatment SYSTEMISATION (RMSY) Developing ways of keeping up to date There are four domains – Coherence, Cognitive Participation, Collective Action, Reflexive Monitoring. Each has four subcategories. Abbreviations are used to identify each subcategory e.g. for the domain “Coherence (CO)”, subcategory “Differentiation (DI)” is written “CODI”. Results Workload or burden of treatment was described by patients across all four domains. Very little data fell outside the NPT framework, and any that did was emotional work which is not included in NPT. Abstract 63 Figure 1 shows the frequency of different types of burden, with the scale reflecting the number of times a category was recorded (see Abstract 63 Table 1 for key of categories). The most frequent category of work mentioned was enacting work such as taking multiple medications or attending multiple hospital appointments, the least mentioned was keeping up to date with current treatments. A taxonomy of treatment burden was constructed. Abstract 63 Figure 1 Conclusion and Implications We have created a conceptual model of treatment burden in CHF patients which can be used to inform the development of a scale to measure treatment burden.

Risk factors and mortality associated with multimorbidity in people with stroke or transient ischaemic attack: a study of 8,751 UK Biobank participants

Background Multimorbidity is common in stroke, but the risk factors and effects on mortality remain poorly understood. Objective To examine multimorbidity and its associations with sociodemographic/lifestyle risk factors and all-cause mortality in UK Biobank participants with stroke or transient ischaemic attack (TIA). Design Data were obtained from an anonymized community cohort aged 40–72 years. Overall, 42 comorbidities were self-reported by those with stroke or TIA. Relative risk ratios demonstrated associations between participant characteristics and number of comorbidities. Hazard ratios demonstrated associations between the number and type of comorbidities and all-cause mortality. Results were adjusted for age, sex, socioeconomic status, smoking, and alcohol intake. Data were linked to national mortality data. Median follow-up was 7 years. Results Of 8,751 participants (mean age 60.9±6.7 years) with stroke or TIA, the all-cause mortality rate over 7 years was 8.4%. Over 85% reported ≥1 comorbidities. Age, socioeconomic deprivation, smoking and less frequent alcohol intake were associated with higher levels of multimorbidity. Increasing multimorbidity was associated with higher all-cause mortality. Mortality risk was double for those with ≥5 comorbidities compared to those with none. Having cancer, coronary heart disease, diabetes, or chronic obstructive pulmonary disease significantly increased mortality risk. Presence of any cardiometabolic comorbidity significantly increased mortality risk, as did any non-cardiometabolic comorbidity. Conclusions In stroke survivors, the number of comorbidities may be a more helpful predictor of mortality than type of condition. Stroke guidelines should take greater account of comorbidities, and interventions are needed that improve outcomes for people with multimorbidity and stroke.