Out-of-hours palliative care: a qualitative study of cancer patients, carers and professionals.

BACKGROUND: New out-of-hours healthcare services in the UK are intended to offer simple, convenient access and effective triage. They may be unsatisfactory for patients with complex needs, where continuity of care is important. AIM: To explore the experiences and perceptions of out-of-hours care of patients with advanced cancer, and with their informal and professional carers. DESIGN OF STUDY: Qualitative, community-based study using in-depth interviews, focus groups and telephone interviews. SETTING: Urban, semi-urban and rural communities in three areas of Scotland. METHOD: Interviews with 36 patients with advanced cancer who had recently used out-of-hours services, and/or their carers, with eight focus groups with patients and carers and 50 telephone interviews with the patient's GP and other key professionals. RESULTS: Patients and carers had difficulty deciding whether to call out-of-hours services, due to anxiety about the legitimacy of need, reluctance to bother the doctor, and perceptions of triage as blocking access to care and out-of-hours care as impersonal. Positive experiences related to effective planning, particularly transfer of information, and empathic responses from staff. Professionals expressed concern about delivering good palliative care within the constraints of a generic acute service, and problems accessing other health and social care services. CONCLUSIONS: Service configuration and access to care is based predominantly on acute illness situations and biomedical criteria. These do not take account of the complex needs associated with palliative and end-of-life care. Specific arrangements are needed to ensure that appropriately resourced and integrated out-of-hours care is made accessible to such patient groups.

'My body's falling apart.' Understanding the experiences of patients with advanced multimorbidity to improve care: serial interviews with patients and carers.

OBJECTIVE: Multimorbidity is increasingly common in the last year of life, and associated with frequent hospital admissions. The epidemiology is well described, but patient perspectives are less understood. We report the experiences and perceptions of people with advanced multimorbidity to inform improvements in palliative and end-of-life care. DESIGN: Multicentre study including serial, multiperspective interviews with patients and their family carers; an interpretive analysis of experiences and understanding of living with advanced multimorbidity. PARTICIPANTS: We recruited patients and their family carers using established UK clinical guidance for the identification of people anticipated to be in their last year of life. SETTINGS: An acute admissions unit in a Scottish regional hospital; a large English general practice; a London respiratory outpatient clinic. RESULTS: We analysed 87 interviews with 37 patients and 17 carers. They struggled with multiple changing medications, multiple services better aligned with single conditions such as cancer, and a lack of coordination and continuity of care. Family carers spoke of physical, mental and emotional exhaustion and feeling undervalued by professionals. Patients and carers frequently saw deteriorating health as part of 'growing old'. Many used a 'day-to-day' approach to self-management that hindered engagement with advance care planning and open discussions about future care. 'Palliative care' and 'dying soon' were closely related concepts for many patients, carers and professionals, so rarely discussed. CONCLUSIONS: Patients with advanced multimorbidity received less care than their illness burden would appear to merit. Some people did restrict their interactions with care providers to preserve autonomy, but many had a limited understanding of their multiple conditions, medications and available services, and found accessing support impersonal and challenging. Greater awareness of the needs associated with advanced multimorbidity and the coping strategies adopted by these patients and carers is necessary, together with more straightforward access to appropriate care.

Living with severe allergy: an Anaphylaxis Campaign national survey of young people.

BACKGROUND: The transition to adulthood can be particularly challenging for young people with severe allergies, who must learn to balance personal safety with independent living. Information and support for young people and their families are crucial to successfully managing this transition. We sought to: gather insights into the impact of severe allergies on the lives of young people; explore where young people go for information about anaphylaxis and what information they want and need; identify areas where further support is needed. METHODS: An online questionnaire survey of young people aged 15-25 years with severe allergies in the United Kingdom (UK) was conducted on behalf of the Anaphylaxis Campaign, the main patient support organisation. Participants were recruited mainly from the Anaphylaxis Campaign membership database and also via allergy clinics and social media. The study was funded by the Anaphylaxis Campaign's In Memoriam Fund. RESULTS: A total of 520 young people responded to the survey. The majority had lived with severe allergies since they were young children; 59% reported having attended Accident and Emergency units as a consequence of their allergies. Only 66% of respondents reported always carrying their epinephrine auto-injectors; only 23% had ever used these. Few were currently receiving specialist allergy care; younger respondents were more likely to be under specialist care (34%) than those 18 years and above (23%). Respondents wanted more information about eating out (56%), travelling (54%) and food labelling (43%). Almost a quarter of respondents (23%) reported needing more information on managing their allergies independently without parental help. Managing allergies in the context of social relationships was a concern for 22% of respondents. CONCLUSIONS: This survey has identified the information and support needs and gaps in service provision for young people with severe allergies. Healthcare professionals and patient support organisations, with the support of the food industry, can help to meet these needs.

Coordination of care for individuals with advanced progressive conditions: a multi-site ethnographic and serial interview study.

BACKGROUND: Coordination of care for individuals with advanced progressive conditions is frequently poor. AIM: To identify how care is coordinated in generalist settings for individuals with advanced progressive conditions in the last year of life. DESIGN AND SETTING: A mixed methods study of three UK generalist clinical settings producing three parallel case studies: an acute admissions unit in a regional hospital, a large general practice, and a respiratory outpatient service. METHOD: Ethnographic observations in each setting, followed by serial interviews of patients with advanced progressive conditions and their family carers in the community. A spectrum of clinicians and healthcare workers were also interviewed. RESULTS: Ethnographic observations were conducted for 22 weeks. A total of 56 patients, 25 family carers and 17 clinicians yielded 198 interviews. Very few participants had been identified for a palliative approach. Rapid throughput of hospital patients and time pressures in primary care hindered identification of palliative care needs. Lack of care coordination was evident during emergency admissions and discharges. Patient, families, and professionals identified multiple problems relating to lack of information, communication, and collaboration at care transitions. Family carers or specialist nurses, where present, usually acted as the main care coordinators. CONCLUSION: Care is poorly coordinated in generalist settings for patients in the last year of life, although those with cancer have better coordinated care than other patients. A model to improve coordination of care for all individuals approaching the end of life must ensure that patients are identified in a timely way, so that they can be assessed and their care planned accordingly.

A primary care Symptoms Clinic for patients with medically unexplained symptoms: pilot randomised trial.

OBJECTIVES: To conduct a pilot trial of a primary care Symptoms Clinic for patients with medically unexplained symptoms and evaluate recruitment and retention, and acceptability of the intervention and to estimate potential treatment effects for a full trial. TRIAL DESIGN: Randomised parallel group pilot trial. SETTING: Primary care in one locality. PARTICIPANTS: Primary care database and postal questionnaire were used to identify patients with multiple specialist referrals and multiple physical symptoms unlikely to be explained by disease. INTERVENTIONS: General practitioner (GP) with special interest 'Symptoms Clinic' + usual care versus usual care alone. The Symptoms Clinic comprised one long (1 h) and three short (20 min) appointments. OUTCOMES: Number of patients identified and recruited; acceptability of the intervention (items from Client Satisfaction Questionnaire and interview); Medical Outcomes Survey Short Form 12 (SF-12) physical component summary. RANDOMISATION: Automated blocked randomisation accessed by telephone. BLINDING: None. NUMBERS RANDOMIZED: 16 to intervention and 16 to usual care alone. RECRUITMENT: 72 patients, from seven GP practices, had repeated specialist referrals and a Patient Health Questionnaire (PHQ)-15 score of ≥10 indicating a high probability of medically unexplained symptoms. 15 were ineligible and 25 declined to participate. NUMBERS ANALYSED: 26 patients; two patients randomised to the intervention group were incorrectly included, three patients in the intervention group and one control did not complete outcome measures. OUTCOME: Most patients randomised to the Symptoms Clinic found the intervention acceptable: eight out of 11 reported the intervention helped them to deal with their problems. The mean difference between groups in SF-12 physical component summary, adjusted for baseline, was 3.8 points (SD 6). HARMS: No observed harms. CONCLUSIONS: Patients with multiple medically unexplained symptoms can be systematically identified in primary care; a randomised trial comparing the Symptoms Clinic with usual care is feasible and has the potential to show clinically meaningful benefit. TRIAL REGISTRATION: ISRCTN63083469.

Management of anaphylaxis in the emergency setting.

Anaphylaxis is a life-threatening emergency that appears to be increasing in frequency. It affects males and females of all ages and ethnic groups. The most common triggers include foods, drugs and venom from stinging insects, although any of a number of other triggers may also be implicated. Death, when it occurs, tends to be due to respiratory and/or cardiovascular compromise, but most of these fatalities can be prevented by appropriate avoidance measures and emergency management. The management of anaphylaxis is hampered by scientific and clinical uncertainty.

Key components of anaphylaxis management plans: consensus findings from a national electronic Delphi study.

OBJECTIVES: There is no international consensus on the components of anaphylaxis management plans and responsibility for their design and delivery is contested. We set out to establish consensus among relevant specialist and generalist clinicians on this issue to inform future randomized controlled trials. DESIGN: A two-round electronic Delphi study completed by a 25-person, multidisciplinary expert panel. Participants scored the importance of a range of statements on anaphylaxis management, identified from a systematic review of the literature, on a five-point scale ranging from 'very important' to 'irrelevant'. Consensus was defined a priori as being achieved if 80% or more of panel members rated a statement as 'important' or 'very important' after Round 2. SETTING: Primary and secondary care and academic settings in the UK and Ireland. PARTICIPANTS: Twenty-five medical, nursing and allied health professionals. MAIN OUTCOME MEASURES: Consensus on the key components of anaphylaxis management plans. RESULTS: The response rate was 84% (n = 21) for Round 1 and 96% (n = 24) for Round 2. The key components of emergency care on which consensus was achieved included: awareness of trigger factors (100%); recognition and emergency management of reactions of different severity (100%); and clear information on adrenaline (epinephrine) use (100%). Consensus on longer-term management issues included: clear written guidelines on anaphylaxis management (96%); annual review of plans (87%); and plans that were tailored to individual needs (82%). CONCLUSIONS: This national consensus-building exercise generated widespread agreement that emergency plans need to be simple, clear and generic, making them easy to implement in a crisis. In contrast, long-term plans need to be negotiated between patient/carers and professionals, and tailored to individual needs. The effectiveness of this expert-agreed long-term plan now needs to be evaluated rigorously.

Improving generalist end of life care: national consultation with practitioners, commissioners, academics, and service user groups.

OBJECTIVE: To identify major concerns of national and local importance in the provision, commissioning, research, and use of generalist end of life care. DESIGN: A national consultation and prioritising exercise using a modified form of the nominal group technique. PARTICIPANTS: Healthcare practitioners, commissioners, academics, and representatives of user and voluntary groups. SETTING: Primary and secondary care, specialist palliative care, and academic and voluntary sectors in England and Scotland. RESULTS: 74% of those invited (210/285) participated. The stage of life to which "end of life care" referred was not understood in a uniform way. Perceptions ranged from a period of more than a year to the last few days of life. Prominent concerns included difficulties in prognosis and the availability of adequate support for patients with advanced non-malignant disease. Generalists in both primary and secondary care were usually caring for only a few patients approaching the end of life at any one time at a point in time. It was therefore challenging to maintain skills and expertise particularly as educational opportunities were often limited. End of life care took place among many other competing and incentivised activities for general practitioners in the community. More needs to be known about models of end of life care and how these can be integrated in a generalist's workload. A greater evidence base is needed about the effectiveness and application of current tools such as the gold standards framework and Liverpool care pathway and about models of palliation in patients with diseases other than cancer. CONCLUSIONS: Definitions of end of life care need clarification and standardisation. A greater evidence base is needed to define models of good practice together with a commitment to provide education and training and adequate resources for service provision. More needs to be known about the context of provision and the influence of competing priorities and incentives.

Discharged from hospital: should more responsibility for meeting patients' and carers' information needs now be shouldered in the community?

This paper reports some of the findings from a recently completed study that aimed to build up a patient-centred account of their pre- and postdischarge information needs and their perceptions of how these were met in a typically busy hospital context and later at home. This was an ethnographic study, with data collected through observation, by serial interviewing of patients (n = 50), in interviews with carers and through focus groups with hospital and community staff (mainly nurses). This paper focuses on those findings that highlight the highly individual nature of patients' information needs; the real difficulties for hospital staff in attempting to meet these needs comprehensively; and the unavoidable 'information gap' that emerges in the postdischarge period and which leaves at least some patients feeling anxious and uncertain about whether (and how) to actively seek out advice. The view that hospital staff are responsible for ensuring that patients are adequately informed while still in hospital continues to be held among community staff. We argue, however, that this may be an unrealistic expectation in this era of short hospitalisation and primary care-led services, and that more responsibility for meeting information needs should now be shouldered in the community.