The Lived Experience of Informal Caregivers of People Who Have Severe Mental Illness and Coexisting Long-Term Conditions: A Qualitative Study.

BACKGROUND: People with severe mental illness (SMI) experience higher rates and poorer outcomes of physical long-term conditions (LTCs). The management of SMI and LTCs is highly complex and many people with SMI rely on informal carers for support, which may lead to high levels of caregiver burden, and caregiver burnout. Caregiver burnout can result in poor health outcomes for informal carers and a reduction in the quality of care they are able to provide. Therefore, it is important to understand the caring experience to identify and address factors that contribute to burden and burnout. METHODS: This paper reports a secondary qualitative analysis of semistructured interviews and focus groups conducted with informal carers of people who have coexisting SMI and LTCs. We recruited 12 informal carers in England between December 2018 and April 2019. The transcripts were coded and analysed thematically. RESULTS: We identified two overarching themes and five subthemes. The themes included 'Fighting on all fronts: Mounting strain between demands and resources', which described the challenge of providing care in the context of coexisting SMI and LTCs, and 'Safekeeping: The necessity of chronic hypervigilance', which captured how informal carers' roles were defined by managing high-risk situations, leading to hypervigilance and paternalistic approaches to care. CONCLUSION: The experience of informal carers for people with SMI and coexisting LTCs is marked by limited access to support and the management of significant risk, which could contribute to high caregiver burden. Further primary research is needed to understand how the experiences of the caregiver role for people with SMI and LTCs influence caregiver burden. PATIENT OR PUBLIC CONTRIBUTION: Our PPI panel DIAMONDS Voice provided guidance on this study from conception, design and development of interview guides and recruitment materials to final write-up. DIAMONDS Voice consists of service users and carers who have experience of SMI and LTCs. Three carer members reviewed the final manuscript, and two are credited as authors.

The lived experience of severe mental illness and long-term conditions: a qualitative exploration of service user, carer, and healthcare professional perspectives on self-managing co-existing mental and physical conditions.

BACKGROUND: People with severe mental illness (SMI), such as schizophrenia, have higher rates of physical long-term conditions (LTCs), poorer health outcomes, and shorter life expectancy compared with the general population. Previous research exploring SMI and diabetes highlights that people with SMI experience barriers to self-management, a key component of care in long-term conditions; however, this has not been investigated in the context of other LTCs. The aim of this study was to explore the lived experience of co-existing SMI and LTCs for service users, carers, and healthcare professionals. METHODS: A qualitative study with people with SMI and LTCs, their carers, and healthcare professionals, using semi-structured interviews, focused observations, and focus groups across the UK. Forty-one interviews and five focus groups were conducted between December 2018 and April 2019. Transcripts were coded by two authors and analysed thematically. RESULTS: Three themes were identified, 1) the precarious nature of living with SMI, 2) the circularity of life with SMI and LTCs, and 3) the constellation of support for self-management. People with co-existing SMI and LTCs often experience substantial difficulties with self-management of their health due to the competing demands of their psychiatric symptoms and treatment, social circumstances, and access to support. Multiple long-term conditions add to the burden of self-management. Social support, alongside person-centred professional care, is a key facilitator for managing health. An integrated approach to both mental and physical healthcare was suggested to meet service user and carer needs. CONCLUSION: The demands of living with SMI present a substantial barrier to self-management for multiple co-existing LTCs. It is important that people with SMI can access person-centred, tailored support for their LTCs that takes into consideration individual circumstances and priorities.

Depression predicts emergency care use in people with chronic obstructive pulmonary disease: a large cohort study in primary care.

Background: Depression is common in people with chronic obstructive pulmonary disease (COPD) and has been associated with a variety of poor outcomes. A large proportion of health care costs in the UK are spent on emergency care. This study examined the prospective relationship between depression and use of emergency care in patients with COPD managed in primary care. Methods: This was a twelve-month, prospective longitudinal study of 355 patients with COPD in six primary care practices in the UK. Baseline measures included demographic characteristics, depression and anxiety, severity of COPD, presence or absence of other chronic diseases, and prior use of emergency care. Outcome measures were (a) number of emergency department (ED) visits; or (b) an emergency hospital admission in the follow-up year. Results: Older age, number of comorbid physical health conditions, severity of COPD, prior use of emergency care, and depression were all independently associated with both ED attendance and an emergency hospital admission in the follow-up year. Subthreshold depression (HADS depression score 4-7) was associated with a 2.8 times increased odds of emergency hospital admission, and HADS depression >8 was associated with 4.8 times increased odds. Conclusion: Depression is a predictor of emergency care in COPD, independent of severity of disease or physical comorbidity. Even mild (subthreshold) symptoms of depression more than double the risk of using emergency care, suggesting there is a strong case to develop and deploy integrated preventive strategies in primary care that can promote mental health in people with COPD.

A (five-)level playing field for mental health conditions?: exploratory analysis of EQ-5D-5L-derived utility values.

PURPOSE: Economic evaluations of mental health interventions often measure health benefit in terms of utility values derived from the EQ-5D. For the five-level version of the EQ-5D, there are two methods of estimating utility [crosswalk and stated preference (5L-SP)]. This paper explores potential impacts for researchers and decision-makers when comparing utility values derived from either method in the specific context of mental health. METHODS: Baseline EQ-5D-5L data from three large randomised controlled trials of interventions for mental health conditions were analysed. Utility values were generated using each method. Mean utility values were compared using a series of t tests on pooled data and subgroups. Scenario analyses explored potential impacts on cost-effectiveness decisions. RESULTS: EQ-5D data were available for 1399 participants. The mean utility value for each trial was approximately 0.08 higher when estimated using the 5L-SP approach compared to crosswalk (p < 0.0001). The difference was greatest among people reporting extreme anxiety/depression (mean utility 5L-SP 0.309, crosswalk 0.084; difference = 0.225; p < 0.0001). Identical improvements in health status were associated with higher costs to gain one QALY with the 5L-SP approach; this is more pronounced when improvements are across all domains compared to improvements on the anxiety/depression domain only. CONCLUSIONS: The two approaches produce significantly different utility values in people with mental health conditions. Resulting differences in cost per QALY estimates suggest that thresholds of cost-effectiveness may also need to be reviewed. Researchers and decision-makers should exercise caution when comparing or synthesising data from trials of mental health interventions using different utility estimation approaches.

Person-centred mental health care: the challenge of implementation.

Within mental health care, 'person-centredness' has been generally interpreted to convey a holistic approach with an attitude of respect for the individual and his/her unique experience and needs. Although it has been possible to demonstrate that professionals can acquire such skills through training, the impact on clinical outcomes has been more difficult to demonstrate in randomized controlled trials. Indeed what is becoming increasingly apparent in the literature is the need to acknowledge and address the degree of complexity that exists within the health care system that militates against achieving satisfactory implementation and outcomes from person-centred mental health care. In addressing this, we must develop and work with more sophisticated and three-dimensional models of 'patient-centredness' that engage with not only what happens in the consulting room (the relationship between individual service users and healthcare professionals), but also addresses the problems involved in achieving person-centredness through modifying the way that services and organizations work, and finally by engaging families and communities in the delivery of health care. A truly meaningful concept of 'people-centredness' encompasses how the views of the population are taken into consideration not only in healthcare but also in health and social care policy, and wider society too.

Understanding the concept of chemotherapy-related nausea: the patient experience.

The aim of this study was to explore the experience of chemotherapy-related nausea in patients with cancer. A qualitative study was carried out with 17 patients who had experienced nausea during their chemotherapy in the UK and USA. Nausea was described as distressing and complex symptom. Patients attempted to construct an understanding of nausea using cognitive processes such as analysing their experience of nausea and related symptoms, attributing causation to nausea and comparing their experiences not only to their own expectations, but also to others' symptom experiences. A number of concurrent and associated symptoms linked with nausea were identified. Preliminary evidence emerged for nausea as part of a cluster of symptoms. Anti-emetic medication, provider-directed management strategies and self-management strategies were used by patients to minimize the effects of nausea. Self-management techniques, such as dietary strategies, were rooted in participants' understanding of nausea and their beliefs about what caused nausea, and there was little evidence of guidance from professionals beyond advice about medication management. This study reveals some of the complexities behind chemotherapy-induced nausea, including a potential symptom cluster, and contributes towards a clearer understanding of this symptom and its effects on patients' lives.

From what and why did genetics emerge as a medical specialism in the 1970s in the UK? A case-history of research, policy and services in the Manchester region of the NHS. National Health Service.

The history of genetics has concentrated on eugenics in the first half of the 20th century and molecular genetics in the second. There is yet little historical analysis of the emergence of genetics as a medical specialism, even for the USA. This paper explores the creation of a regional genetic service in Manchester, UK. It surveys the ways in which hereditary diseases were managed and investigated in the first two decades of the NHS (1948-68), and the marginality of geneticists in this period. It suggests that the emergence of consultant geneticists as conspicuous service specialists depended heavily on their ability to create and control laboratory and counselling services for antenatal diagnosis, especially of Down's syndrome, from the late 1960s. These services, for syndromes that were not strongly hereditary, helped extend the meaning of 'genetic' in medicine from 'hereditary' to 'related to chromosomes and genes'. The services received government support because of popular demand for diagnoses (following the Abortion Act of 1967), because 'preventive services' were seen as cost effective, and because geneticists could argue that inadequate counselling might give rise to legal difficulties. By linking laboratory services and counselling, geneticists offered an integrated service, in line with other consultant-led services (e.g. for kidneys) which linked research, laboratory services, clinical work, and education/public health functions. We suggest such services fitted the hospital-dominated political economy of medicine which underlay the NHS re-organisation of 1974; and that the salience of the new genetics owed much to this combination of high-science and public concern. Geneticists were then able to integrate molecular genetics into key regional centres, so shaping the initial phases of the 'molecular' revolution. We maintain that this local study offers useful wider insights, not only into the development of a key specialism, but also into the changing dynamics of research and policy in the NHS.

Endometroid adenocarcinoma of the ovary with a paraneoplastic syndrome.

We present a case of paraneoplastic cerebellar degeneration complicating ovarian cancer.

The chemotherapy of onchocerciasis XVII. A clinical evaluation of albendazole in patients with onchocerciasis; effects of food and pretreatment with ivermectin on drug response and pharmacokinetics.

Three pharmacokinetic studies were conducted in Ghanaian patients in support of investigations of albendazole and its combination with ivermectin in the treatment of onchocerciasis. These included dose-finding studies, investigations into the influence of a fatty meal on the relative bioavailability of albendazole as assessed by the measurement of concentrations of albendazole sulphoxide and the effect of prior treatment with ivermectin on antiparasitic efficacy and plasma concentrations of albendazole suphoxide. Increasing the dose of albendazole from 800 mg x 3 daily to 1200 mg x 3 daily produced no additional antiparasitic effects although plasma concentrations of albendazole sulphoxide were increased in proportion to dose size. Moreover, the plasma concentration vs time profiles suggest that most of the effects observed may have been due to the first 800 mg dose. Administration of ivermectin had no effect on the pharmacokinetics of albendazole sulphoxide and there was no additive effect on the parasite. Albendazole was well tolerated and its administration 5-7 days after ivermectin produced little additional reaction. Although it is not macrofilaricidal, it does possess important chemosterilant properties which are enhanced by its administration with a fatty breakfast. Under these conditions, the relative bioavailability of albendazole is increased four-fold. These studies support further work with albendazole administered with food either as a single dose, as multiple single doses repeated at intervals of several months and its coadministration with ivermectin. They also encourage the belief that a more potent and bioavailable benzimidazole may be macrofilaricidal or a permanent chemosterilant for Onchocerca volvulus on single dosage.

Rapid and sensitive method for the determination of albendazole and albendazole sulphoxide in biological fluids.

A sensitive and selective reversed-phase high-performance liquid chromatographic method for the determination of albendazole and its active metabolite albendazole sulphoxide in plasma has been developed. It involves single-step extraction of plasma with dichloromethane, evaporation of the solvent and chromatography on a muBondapak phenyl column with a mobile phase of water containing 1% (v/v) triethylamine-methanol-acetonitrile (70:10:20, v/v) at pH 3.1. Run time is 12 min. The assay satisfies all of the criteria required for use in clinical pharmacokinetic studies and possesses important advantages, notably speed and expense, over current methods.

The capitation study. 3. The views of participating dentists and the profession.

During the course of a 3-year parallel, controlled clinical trial comparing a capitation system of remuneration with fee-for-service for the dental care of children, the views of the dentists were gained through meetings, informal communication, and a structured questionnaire sent to every dentist in the study. The questionnaires completed by the dentists who had been in the study from the beginning were used in the analysis. The views of practice principals on practice administration were also gained. Dentists in capitation claimed to have greater clinical freedom than those in fee-for-service, but the system under test involved more practice administration. The trial allowed the two systems to be compared under limited, controlled conditions, thus benefiting any substantive scheme that might be developed from it.

The Capitation Study. 2. Does capitation encourage more prevention?

The results of a 3-year parallel, controlled clinical trial comparing a capitation system of payment for the dental care of children with fee-for-service, showed that capitation offered dentists more clinical freedom. Dentists in capitation used this to provide more preventive care, particularly advice to parents on the control of dental disease in their children. In contrast, few fissure sealants were placed and few topical fluoride applications were made under either system. However, parents in both systems were satisfied with the preventive service their children received and were confident of their ability to control their children's dental disease. The effect of this increased preventive activity was not yet apparent within the period of the study.

The capitation study. 1. Does capitation encourage "supervised neglect'?

Four matched pairs of geographically and socially contrasting areas of Britain were randomly allocated within pairs to either a capitation or fee-for-service payment system for the dental care of children in a 3-year clinical trial. Measurements were made on the dental health of randomly selected 5-6 and 14-15-year-old patients and the views of their parents elicited. Patterns of treatment were also gained from the clinical records of randomly selected patients. In addition, the views of the dentists taking part, of the profession's representatives, and of the administrators of the systems were obtained. No evidence of systematic neglect could be found among the children treated under capitation, but they had fewer fillings, more untreated diseased teeth and similar disease levels to their counterparts treated under fee-for-service. Dentists in capitation carried out fewer fillings, fewer extractions, took fewer radiographs and saw their patients less frequently than their fee-for-service colleagues.

A trial of a capitation system of payment for the treatment of children in the General Dental Service. Final report. Dental Health Services Research Unit, University of Manchester. September, 1989.

A 3-year clinical trial comparing capitation and fee-for-service remuneration systems for general dental practitioners for the treatment of children has been successfully completed. Capitation dentists restored carious teeth at a later stage in the disease process than fee-for-service controls, and carried out more preventive treatment and advice. However, the disease experience of their patients was little different from that of patients treated under fee-for-service. Capitation dentists saw their patients less frequently and took fewer radiographs than their fee-for-service colleagues. The prevalence of both fissue sealants and arrested caries was low in both groups, as was the prevalence of teeth extracted as a result of caries. Levels of oral cleanliness were similar under both systems. Private treatment was rarely prescribed for children, but was more prevalent for patients of fee-for-service dentists. The profession felt that capitation offered greater clinical freedom and more financial stability to dentists, but a greater temptation to under-prescribe treatment. The profession lacked commitment to capitation as a method of remuneration for the treatment of children in the General Dental Service. Fee-for-service dentists appeared to be more innovative, expressed a greater allegiance to their patients and felt a greater temptation to over-prescribe than capitation dentists. The parents had a high opinion of the service for children, irrespective of the remuneration system, and the children found the service very acceptable. Parents had a stronger allegiance to the fee-for-service than the capitation dentists. The study revealed several short-comings in the capitation model tested, but solutions to all of these became apparent. A capitation agreement of more than 12 months would simplify administration and reduce costs, as would a reduction in the number of forms. The need to notify parents when a dentist was replaced in a practice created considerable difficulties and increased expense. The treatment of trauma and extractions for orthodontic purposes should have been items excluded from the capitation fee. The need for information on dentists' activity in capitation was accepted but should be kept simple and relevant. Monitoring quality of care under capitation can be carried out from the routine data collected for administrative purposes. Capitation does not appear to increase participation. Costs of administering capitation are little different from those for fee-for-service. More resources were spent per dentist and per patient under capitation than fee-for-service. In the clinical trial fee-for-service was more cost-effective than capitation.(ABSTRACT TRUNCATED AT 400 WORDS)

The Capitation Study--your questions answered.

In the August 23, 1986 issue of the British Dental Journal, an account of the Capitation Study was published in the form of questions and answers. The study had just commenced and general dental practitioners were interested to learn the reasons for its conduct, who was carrying it out, how it was planned and what eventual effect it might have on dentists' professional lives. Now that the study has ended and the results have been collated and delivered to the Department of Health, readers might wish to be reminded of its aims, conduct and outcome. During the study, many practitioners asked interesting questions, some of which this article will attempt to answer.