An exploration of treatment burden and patient capacity in people with stroke

Background and aims: Advances in modern medicine have led to improved outcomes after stroke, yet an increased treatment burden has been placed on patients. Treatment burden is the workload of health care for people with chronic illness and the impact that this has on functioning and well-being. Those with comorbidities are likely to be particularly burdened. Excessive treatment burden can negatively affect outcomes. Individuals are likely to differ in their ability to manage health problems and follow treatments, defined as patient capacity. The aim of this thesis was to explore the experience of treatment burden for people who have had a stroke and the factors that influence patient capacity. Methods: There were four phases of research. 1) A systematic review of the qualitative literature that explored the experience of treatment burden for those with stroke. Data were analysed using framework synthesis, underpinned by Normalisation Process Theory (NPT). 2) A cross-sectional study of 1,424,378 participants >18 years, demographically representative of the Scottish population. Binary logistic regression was used to analyse the relationship between stroke and the presence of comorbidities and prescribed medications. 3) Interviews with twenty-nine individuals with stroke, fifteen analysed by framework analysis underpinned by NPT and fourteen by thematic analysis. The experience of treatment burden was explored in depth along with factors that influence patient capacity. 4) Integration of findings in order to create a conceptual model of treatment burden and patient capacity in stroke. Results: Phase 1) A taxonomy of treatment burden in stroke was created. The following broad areas of treatment burden were identified: making sense of stroke management and planning care; interacting with others including health professionals, family and other stroke patients; enacting management strategies; and reflecting on management. Phase 2) 35,690 people (2.5%) had a diagnosis of stroke and of the 39 co-morbidities examined, 35 were significantly more common in those with stroke. The proportion of those with stroke that had >1 additional morbidities present (94.2%) was almost twice that of controls (48%) (odds ratio (OR) adjusted for age, gender and socioeconomic deprivation; 95% confidence interval: 5.18; 4.95-5.43) and 34.5% had 4-6 comorbidities compared to 7.2% of controls (8.59; 8.17-9.04). In the stroke group, 12.6% of people had a record of >11 repeat prescriptions compared to only 1.5% of the control group (OR adjusted for age, gender, deprivation and morbidity count: 15.84; 14.86-16.88). Phase 3) The taxonomy of treatment burden from Phase 1 was verified and expanded. Additionally, treatment burdens were identified as arising from either: the workload of healthcare; or the endurance of care deficiencies. A taxonomy of patient capacity was created. Six factors were identified that influence patient capacity: personal attributes and skills; physical and cognitive abilities; support network; financial status; life workload, and environment. A conceptual model of treatment burden was created. Healthcare workload and the presence of care deficiencies can influence and be influenced by patient capacity. The quality and configuration of health and social care services influences healthcare workload, care deficiencies and patient capacity. Conclusions: This thesis provides important insights into the considerable treatment burden experienced by people who have had a stroke and the factors that affect their capacity to manage health. Multimorbidity and polypharmacy are common in those with stroke and levels of these are high. Findings have important implications for the design of clinical guidelines and healthcare delivery, for example co-ordination of care should be improved, shared decision-making enhanced, and patients better supported following discharge from hospital.

Reactive Attachment Disorder in infants in foster care and associated mental health and cognitive functioning

Background: Reactive attachment disorder (RAD) has been described as one of the least researched and most poorly understood psychiatric disorders (Chaffin et al., 2006). Despite this, given what is known about maltreatment and attachment, it is likely that RAD has profound consequences for child development. Very little is known about the prevalence and stability of RAD symptoms over time. Until recently it has been difficult to investigate the presence of RAD due to limited measures for informing a diagnosis. However this study utilised a new observational tool Method: A cross sectional study design with a one-year follow-up explored RAD symptoms in maltreated infants in Scotland (n=55, age range= 16-62 months) and associated mental health and cognitive functioning. The study utilised the Rating of Inhibited Attachment Behavior Scale (Corval, et al., unpublished 2014) that has recently been developed by experts in the field along side The Disturbances of Attachment Interview (Smyke & Zeanah, 1999). Children were recruited as part of the BeST trial, whereby all infants who came in to the care of the local authority in Glasgow due to child protection concerns were invited to participate. The study sample was representative of the larger pool of data in terms of age, gender, mental health and cognitive functioning. Results: The sample was found to be representative of the population of maltreated children from which it was derived. Prevalence of RAD was found to be 7.3% (n=3, 95% CI [0.43 – 14.17]) at T1, when children are first placed in to foster care. At T2, following one year in improved care conditions, 4.3% (n=2, 95% CI [below 0 – 10.16]) met a borderline RAD diagnosis. Levels of observed RAD symptoms decreased significantly at T2 in comparison to T1 but carer reported symptoms of RAD did not. Children whose RAD symptoms did not improve were found to be significantly older and showed less prosocial behaviour. RAD was associated with some mental health and cognitive difficulties. Lower Verbal IQ and unexpectedly, prosocial behaviour were found to predict RAD symptoms. Conclusions: The preliminary findings have added to the developing understanding of RAD symptoms and associated difficulties however further exploration of RAD in larger samples would be invaluable.