Realist evaluation of Autism ServiCe Delivery (RE-ASCeD): which diagnostic pathways work best, for whom and in what context? Findings from a rapid realist review.

OBJECTIVES: Waiting times in the UK for an autism diagnostic assessment have increased rapidly in the last 5 years. This review explored research (including 'grey' literature) to uncover the current evidence base about autism diagnostic pathways and what works best, for whom and in what circumstances, to deliver high quality and timely diagnosis. DESIGN: We performed a Rapid Realist Review consistent with recognised standards for realist syntheses. We collected 129 grey literature and policy/guidelines and 220 articles from seven databases (January 2011-December 2019). We developed programme theories of how, why and in what contexts an intervention worked, based on cross comparison and synthesis of evidence. The focus was on identifying factors that contributed to a clearly defined intervention (the diagnostic pathway), associated with specific outcomes (high quality and timely), within specific parameters (Autism diagnostic services in Paediatric and Child & Adolescent Mental Health services in the UK). Our Expert Stakeholder Group, including representatives from local parent forums, national advocacy groups and clinicians, was integral to the process. RESULTS: Based on 45 relevant articles, we identified 7 programme theories that were integral to the process of diagnostic service delivery. Four were related to the clinical pathway: initial recognition of possible autism; referral and triaging; diagnostic model; and providing feedback to parents. Three programme theories were pertinent to all stages of the referral and diagnostic process: working in partnership with families; interagency working; and training, service evaluation and development. CONCLUSIONS: This theory informed review of childhood autism diagnostic pathways identified important aspects that may contribute to efficient, high quality and family-friendly service delivery. The programme theories will be further tested through a national survey of current practice and in-depth longitudinal case studies of exemplar services. TRIAL REGISTRATION NUMBER: NCT04422483.

Hospice at Home services in England: a national survey.

OBJECTIVE: Hospice at Home (HAH) services aim to enable patients to be cared for and die at home, if that is their choice and achieve a 'good death'. A national survey, in 2017, aimed to describe and compare the features of HAH services and understand key enablers to service provision. METHODS: Service managers of adult HAH services in the 'Hospice UK' and National Association for Hospice at Home directories within England were invited to participate. Information on service configuration, referral, staffing, finance, care provision and enablers to service provision were collected by telephone interview. RESULTS: Of 128 services invited, 70 (54.7%) provided data. Great diversity was found. Most services operated in mixed urban/rural (74.3%) and mixed deprivation (77.1%) areas and provided hands-on care (97.1%), symptom assessment and management (91.4%), psychosocial support (94.3%) and respite care (74.3%). Rapid response (within 4 hours) was available in 65.7%; hands-on care 24 hours a day in 52.2%. Charity donations were the main source of funding for 71.2%. Key enablers for service provision included working with local services (eg, district nursing, general practitioner services), integrated health records, funding and anticipatory care planning. Access to timely medication and equipment was critical. CONCLUSION: There is considerable variation in HAH services in England. Due to this variation it was not possible to categorise services into delivery types. Services work to supplement local care using a flexible approach benefitting from integration and funding. Further work defining service features related to patient and/or carer outcomes would support future service development.

Factors influencing trends in opioid prescribing for older people: a scoping review.

AIM: The review aimed to identify factors influencing opioid prescribing as regular pain-management medication for older people. BACKGROUND: Chronic pain occurs in 45%-85% of older people, but appears to be under-recognised and under-treated. However, strong opiate prescribing is more prevalent in older people, increasing at the fastest rate in this age group. METHODS: This review included all study types, published 1990-2017, which focused on opioid prescribing for pain management among older adults. Arksey and O'Malley's framework was used to scope the literature. PubMed, EBSCO Host, the UK Drug Database, and Google Scholar were searched. Data extraction, carried out by two researchers, included factors explaining opioid prescribing patterns and prescribing trends. FINDINGS: A total of 613 papers were identified and 53 were included in the final review consisting of 35 research papers, 10 opinion pieces and 8 grey literature sources. Factors associated with prescribing patterns were categorised according to whether they were patient-related, prescriber-driven, or system-driven. Patient factors included age, gender, race, and cognition; prescriber factors included attitudes towards opioids and judgements about 'normal' pain; and policy/system factors related to the changing policy landscape over the last three decades, particularly in the USA. CONCLUSIONS: A large number of context-dependent factors appeared to influence opioid prescribing for chronic pain management in older adults, but the findings were inconsistent. There is a gap in the literature relating to the UK healthcare system; the prescriber and the patient perspective; and within the context of multi-morbidity and treatment burden.

An evaluation of the clinical microsystems approach in general practice quality improvement.

BACKGROUND: Changes to the general practice (GP) contract in England (April 2019) introduced a new quality improvement (QI) domain. The clinical microsystems programme is an approach to QI with limited evidence in primary care. AIM: To explore experiences of GP staff participating in a clinical microsystems programme. DESIGN AND SETTING: GPs within one clinical commissioning group (CCG) in South East England. Normalisation process theory informed qualitative approach. METHOD: Review of all CCG clinical microsystems projects using pre-existing data. The Diffusion of Innovation Cycle was used to inform the sampling frame and GPs were invited to participate in interviews or focus groups. Ten practices participated; 11 coaches and 16 staff were interviewed. RESULTS: The majority of projects were process-driven activities related to administrative systems. Projects directly related to health outputs were fewer and related to externally imposed targets. Four key elements facilitated practices to engage: feeling in control; receiving enhanced service payment; having a senior staff member championing the approach; and good practice-coach relationship. There appeared to be three key benefits in addition to project-specific ones: improved working relationships between CCG and practice; more cohesive practice team; and time to reflect. CONCLUSION: Small projects with clear parameters were more successful than larger ones or those spanning organisations. However, there was little evidence suggesting the key benefits were unique attributes of the microsystems approach and sustainability was problematic. Future research should focus on cross-organisational approaches to QI and identify what, if any, added value the approach provides.

How unmet are unmet needs post-stroke? A policy analysis of the six-month review.

BACKGROUND: Stroke is the fourth largest cause of death in the UK and a leading cause of death and disability worldwide. Policy recommends reviewing patients at six-months post-stroke to identify unmet needs but lacks evidence of effectiveness. This study explored needs identified by patients, how they were addressed by the six-month review (6MR) and whether or not policy aspirations for the review were substantiated by the data. METHODS: A multiple case study design underpinned by critical realism. Data sources included interviews with 46 patients and 28 professionals across three sites in the South East Coast of England. Patients' interviews coincided with their reviews of which twenty-nine were observed. Thematic analysis of interviews, observations and policy documents was carried out within and across sites. RESULTS: There were 'hotspots' in the care pathway where patients and carers felt particularly unsupported. Whilst these gaps exacerbated anxiety, they were neither universal nor ameliorated by review. Patients consistently identified unmet needs related to rehabilitation, information/education and support. Stroke nurse specialists focused on investigations, medication and liaising with general practitioners or consultants while the Stroke Association co-ordinator focused on sign-posting to other services and provision of generic information which not all respondents found helpful. The remit of review was more modest than that of policy aspirations. CONCLUSIONS: The review rests on two causal assumptions: that identifying unmet need will lead to its amelioration; and that provision of information will lead to behaviour change and self-management. While there was some evidence to support the former, there was almost none for the latter. The 6MR would benefit from a patient-led approach to its timing and format; a consistent and individualised approach to stroke education and self-management that is embedded across the care pathway; and targeting reviews should be considered.

You cannot choose your family: sociological ambivalence in the hemodialysis unit.

Living with end-stage renal disease is challenging and requires a great deal of self-management, but little is known about the experiences of patients and staff around the subject. We held six focus groups in three hemodialysis units, each unit hosting 1 staff and 1 patient focus group. A total of 15 staff members and 15 patients participated. We employed thematic analysis using a priori and emerging codes. Five key themes emerged: challenges, enablers, complex balancing acts, good patient/bad patient, and the hemodialysis unit as a family. We explored the family metaphor further through the work of Bourdieu, but concluded that relationships in the hemodialysis unit most closely fit the concept of sociological ambivalence. We present an explanatory framework around inherent tensions characterizing relationships within the hemodialysis unit and highlight implications for facilitating self-management and developing collaborative approaches to care.

Patient and carer experience of obtaining regular prescribed medication for chronic disease in the English National Health Service: a qualitative study.

BACKGROUND: The increasing burden of chronic disease is recognised globally. Within the English National Health Service, patients with chronic disease comprise of half of all consultations in primary care, and 70% of inpatient bed days. The cost of prescribing long-term medications for those with physical chronic diseases is rising and there is a drive to reduce medicine wastage and costs. While current policies in England are focused on the latter, there has been little previous research on patient experience of ordering and obtaining regular medication for their chronic disease. This paper presents findings from England of a qualitative study and survey of patients and their carers' experiences of community and primary care based services for physical chronic diseases. Although not the primary focus of the study, the results highlighted particular issues around service delivery of repeat prescriptions. METHODS: We conducted 21 qualitative in-depth interviews with 30 patients and family carers' in two Primary Care Trusts in England. Participants were receiving community based care for diabetes, respiratory, neurological or complex co-morbidities, and ranged in age from 39-92 years old. We used a broadly inductive approach to enable themes around patient experience to emerge from the data. RESULTS: While the study sought to gain an overview of patient experience, the findings suggested that the processes associated with ordering and obtaining regular medication - the repeat prescription, was most frequently described as a recurring hassle of managing a long-term condition. Issues for patients and carers included multiple journeys to the surgery and pharmacy, lack of synchrony and dissatisfaction with the length of prescriptions. CONCLUSION: Much literature exists around medication waste and cost, which led to encouragement from the NHS in England to reduce dosage units to a 28-day supply. While there has been an acknowledgement that longer supplies may be suitable for people with stable chronic conditions, it appears that there is limited evidence on the impact of shorter length prescriptions on patient and carer experience, adherence and health outcomes. Recent policy documents within England also fail to address possible links between patient experience, adherence and flaws within repeat prescription service delivery.

Talking about living and dying with the oldest old: public involvement in a study on end of life care in care homes.

BACKGROUND: Public involvement in research on sensitive subjects, such as death and dying, can help to ensure that questions are framed to reflect the interests of their peers, develop a shared understanding of issues raised, and moderate the often unequal power relationship between researcher and participant. This paper describes the contribution and impact of older members of a Public Involvement in Research group (PIRg) to a study on living and dying in care homes. METHODS: A longitudinal study, with a mixed method approach, its aims were to capture key experiences, events and change over one year, of older people resident in participating care homes in the East of England. Residents were interviewed up to three times and their case notes were reviewed four times over the year. Interviews were semi structured, and recorded. Four members of a Public Involvement in Research group (PIRg) contributed to preliminary discussions about the research and three were involved with many of the subsequent stages of the research process including the facilitation of discussion groups with residents. RESULTS: There were three areas where the involvement of the Public Involvement in Research group (PIRg) positively influenced the study process. These were recruitment, governance and safeguarding, and in collaboration with the residents in the care homes, the discussion and interpretation of emergent findings. PIRg members were of similar age to the residents and their involvement provided different and often more reflective insights of the significance of the findings for the participants. There were examples where decision making about the range of PIRg participation was not always negotiable, and this raised issues about power relationships within the team. Nevertheless, PIRg members expressed personal benefit and satisfaction through participating in the research and a commitment to continue to support research with this older age group. CONCLUSIONS: The contribution of the PIRg supported a successful recruitment process that exceeded response rates of other studies in care homes. It safeguarded residents during the conduct of research on a sensitive topic and helped in validating the interview data gathered by the researchers through the discussion groups facilitated by the PIRg. There were power differentials that persisted and affected PIRg participation. The study has showed the value of developing job descriptions and a more formal means of setting out respective expectations. Future research may wish to elicit the views of focal participants in such studies about the mediation of research by public involvement in research.

The UK Expert Patients Program: lessons learned and implications for cancer survivors' self-care support programs.

Globally, the enablement of self-care is increasingly being recognised as an essential component of chronic disease management. Within the UK a key self-care policy initiative is the Expert Patients Program. Developed from the Chronic Disease Self-Management Program, this is a 6 week self-management education program for people with different chronic diseases, facilitated by lay volunteers. As an example of a major public health initiative designed to enhance self-management in long-term conditions, this paper draws on evaluations of the EPP and CDSMP and analyzes the implications for the development of similar programs for cancer survivors. There are a number of evaluations of the CDSMP which suggest significant improvement in participants' chronic disease management self-efficacy and some evidence of healthcare utilization reduction. However, whilst the national evaluation of the EPP demonstrated similar improvements in self-efficacy and health status, there was no significant effect on healthcare utilization. Trials of such programs need to be treated with some caution as participants are often not typical of the general population, and as a complex intervention effectiveness is inherently difficult to assess. Qualitative evaluations revealed that the EPP's strength was derived mainly through peer support and learning. Nevertheless, a number of contextual problems were identified including recruitment, clinicians' lack of engagement with the program and inflexible course materials. Lay-led self-care support programs such as the EPP have a significantly positive effect on self-efficacy which could be of benefit to cancer survivors. However, a number of lessons should be learned from the EPP when developing similar initiatives for cancer survivors.

The Expert Patients Programme: a paradox of patient empowerment and medical dominance.

Self-care is seen as a key element in managing resource demand in chronic disease and is also perceived as an empowering right for patients. The Chronic Disease Self-Management Programme developed in the USA has been adopted in a number of countries and in the UK has been as adapted as the Expert Patients Programme. However, despite its potential as a lay-led empowering initiative, the Expert Patients Programme has been criticised as perpetuating the medical model and failing to reach those in most need. This paper revisits a critique of the Expert Patients Programme, and drawing upon a qualitative study seeks to explore whether the Expert Patients Programme enables empowerment or replicates traditional patterns of the patient-professional relationship. A grounded-theory approach was adopted utilising focus groups, in-depth interviews and participant observation. Data were analysed through the constant comparative method and the development of codes and categories. Conducted in the relatively affluent area of the south-east of England, this paper draws on data from 66 individuals with a chronic illness who were knowledgeable, active and informed. The study revealed a number of characteristics common to expert patients that were linked to a systematic, proactive and organised approach to self-management, a clear communication style and the ability to compartmentalise emotion. The study included participant observation of an Expert Patients Programme and a professional-led self-management course. The paradoxical nature of the Expert Patients Programme was revealed, for whilst there was evidence that it reinforced the medical paradigm, there was a concurrent acknowledgement and support for the subjective experience of living with a long-term condition. Furthermore, whilst the policy emphasis has been on individual empowerment within the Expert Patients Programme, there is some evidence that it may be triggering a health consumer movement.

Long-term conditions. 2: supporting and enabling self-care.

This article is the second of a series focusing on long-term conditions. It explores supported self-care identifying that this is the most appropriate approach to managing long-term conditions in 70-80% of patients with a chronic illness. The paper focuses on the Department of Health for England and Wales flagship initiative; the Expert Patient Programme. This lay-led self-management programme for people affected by a physical long-term condition is currently being rolled out by PCTs throughout the NHS and is seen as a key mechanism for empowering individuals and reducing resource demand in long-term conditions. The history, content, current and future models of the Expert Patient Programme will be described and the paper concludes by discussing future challenges for the programme as illuminated by two external evaluations.

Nurses' responses to expert patients: the rhetoric and reality of self-management in long-term conditions: a grounded theory study.

BACKGROUND: Against the backdrop in the western world of increasing prevalence of chronic disease, active and informed patients and a policy emphasis on self-management, this English study explored health professionals' responses to expert patients. OBJECTIVES: To: DESIGN: A grounded theory approach was utilised with two concurrent data strands. SETTING: A relatively affluent English county including community, primary and secondary care settings. PARTICIPANTS: Via purposeful and theoretical sampling 100 health professionals (nurses, doctors, physiotherapists) and 100 adults affected by chronic disease participated. METHODS: Focus groups, interviews and observation. RESULTS: Nurses were found to be most anxious about expert patients when compared to other professionals, which appeared to be linked with a lack of professional confidence and unfounded fears regarding litigation. However, nurse specialists often provided a negative case for this. As a whole, nurses were most able to meet the emotional needs of patients, but apart from nurse specialists did not articulate this as a skill. CONCLUSION: Apart from nurse specialists the majority of nurses appeared limited in appropriately facilitating self-management. It is suggested that this is linked to an ongoing nursing culture of patient as passive, an over-emphasis on empirical knowledge and a feeling of vulnerability on the nurses' part towards expert patients. The findings also indicate a rhetoric rather than reality of autonomous nursing roles within the chronic disease management agenda.

Long-term conditions: making sense of the current policy agenda.

This article is first of a series focusing on long-term conditions and aims to guide district nurses through the whole raft of policies that are currently emerging from the Department of Health for England and Wales. The article provides an overview of current policy by taking the reader through the initiatives, starting with population-wide prevention and concluding with policies focusing on clients with complex needs. The main triggers for government health strategies and the influence of models from the United States are discussed. The national service framework for long term conditions is explained and used as an example of the current emphasis on generic, rather than condition-specific, initiatives. The article concludes by drawing the initiatives together within the most recent model to come out of the Department of Health--the NHS and Social Care Model.

The expert patient: issues and implications for community nurses.

First highlighted in "Saving Lives: Our Healthier Nation" (Department of Health, 1999), the Expert Patient programme is now being piloted throughout England and Wales. The programme is focused on helping individuals to self-manage their long-term condition more effectively. While acknowledging the expertise an individual brings to the management of their condition, the programme seeks to further develop these skills with the aim of reducing incapacitation and increasing symptom control and self-esteem. As this is a lay-led programme it is unlikely that community nurses will have an explicit role within the initiative. However, all community nurses have significant input with individuals with long-term conditions and will know clients whom they would term as expert. Following an outline of the initiative, this article presents a number of case scenarios and seeks to explore some of the issues that patients, families and practitioners face when dealing with the concept of "expert patient".