Search

ObjectiveWe aimed to explore the views of Malaysian children with asthma and their parents to enhance understanding of early influences on development of self-management skills.DesignThis is a qualitative study conducted among children with asthma and their parents. We used purposive sampling and conducted focus groups and interviews using a semi-structured topic guide in the participants’ preferred language. All interviews were audio-recorded, transcribed verbatim, entered into NVivo and analysed using a grounded theory approach.SettingsWe identified children aged 7–12 years with parent-reported, physician-diagnosed asthma from seven suburban primary schools in Malaysia. Focus groups and interviews were conducted either at schools or a health centre.ResultsNinety-nine participants (46 caregivers, 53 children) contributed to 24 focus groups and 6 individual interviews. Children mirrored their parents’ management of asthma but, in parallel, learnt and gained confidence to independently self-manage asthma from their own experiences and self-experimentation. Increasing independence was more apparent in children aged 10 years and above. Cultural norms and beliefs influenced children’s independence to self-manage asthma either directly or indirectly through their social network. External influences, for example, support from school and healthcare, also played a role in the transition.ConclusionChildren learnt the skills to self-manage asthma as early as 7 years old with growing independence from the age of 10 years. Healthcare professionals should use child-centred approach and involve schools to facilitate asthma self-management and support a smooth transition to independent self-management.Trial registration numberMalaysian National Medical Research Register (NMRR-15-1242-26898).

BACKGROUND: Case fatality after total anterior circulation stroke is high. Our objective was to describe the experiences and needs of patients and caregivers, and to explore whether, and how, palliative care should be integrated into stroke care.METHODS: From 3 stroke services in Scotland, we recruited a purposive sample of people with total anterior circulation stroke, and conducted serial, qualitative interviews with them and their informal and professional caregivers at 6 weeks, 6 months and 1 year. Interviews were transcribed for thematic and narrative analysis. The Palliative Care Outcome Scale, EuroQol-5D-5L and Caregiver Strain Index questionnaires were completed after interviews. We also conducted a data linkage study of all patients with anterior circulation stroke admitted to the 3 services over 6 months, which included case fatality, place of death and readmissions.RESULTS: Data linkage (n= 219) showed that 57% of patients with total anterior circulation stroke died within 6 months. The questionnaires recorded that the patients experienced immediate and persistent emotional distress and poor quality of life. We conducted 99 interviews with 34 patients and their informal and professional careers. We identified several major themes. Patients and caregivers faced death or a life not worth living. Those who survived felt grief for a former life. Professionals focused on physical rehabilitation rather than preparation for death or limited recovery. Future planning was challenging. "Palliative care" had connotations of treatment withdrawal and imminent death.INTERPRETATION: Major stroke brings likelihood of death but little preparation. Realistic planning with patients and informal caregivers should be offered, raising the possibility of death or survival with disability. Practising the principles of palliative care is needed, but the term "palliative care" should be avoided or reframed.

In the United Kingdom, there are acknowledged short comings in allergy care provision for patients seen in primary care. There is a lack of allergy training for healthcare professionals and this leads to inappropriate referrals to the limited number of allergy specialists. The primary aims of this study are to assess the feasibility of delivering and evaluating a new nurse-led allergy service in primary care, measured by recruitment, retention and quality of life. This is a single arm feasibility trial in which up to 250 participants referred to the nurse-led allergy clinic will receive the intervention and complete 6–12 weeks follow-up before being referred back to their usual care. Primary outcomes for this study will be establishment of clinics, recruitment and retention rates, and estimates of change in disease-specific quality of life measures. Secondary outcomes will be acceptability of the new service to participants/carers and healthcare professionals. A sample of participants and professional stakeholders will take part in more in-depth semi-structured qualitative interviews. Data from this feasibility trial will be used to inform plans for a pilot randomised controlled trial of nurse-led allergy clinics.

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.

BackgroundDespite apparent unmet needs, people with chronic obstructive pulmonary disease (COPD) rarely ask for help. We explored the concept of need from the perspective of patients, their family carers and professionals.MethodsWe recruited inpatients at two National Health Service (NHS) Lothian hospitals to a structured, holistic review of care needs delivered at home by a respiratory nurse 4 weeks postdischarge. Using semistructured interviews and group discussions, review notes and field-notes we explored the views of patients, carers and professionals on perceptions of need and the actions requested. Data were analysed thematically using Bradshaw's classification of need.Results14 patients, 3 carers, 28 professionals provided 36 interviews and 2 discussion groups. Few needs were identified by our intervention and few actions planned. Professionals identified ‘normative’ needs some of which had been addressed during routine discharge planning. Other needs (physical/psychological limitations, social/financial concerns, existential issues) were ‘felt’ by patients and carers but articulated in response to the researcher's questions rather than actively ‘expressed’. Patients often did not wish any action to address the problems, preferring care from family members rather than formal agencies. Many spoke of the over-arching importance of retaining a sense of independence and autonomy, considering themselves as ageing rather than ill.ConclusionsIn contrast to professionally-defined ‘normative’ needs, patients rarely perceived themselves as needy, accepting their ‘felt’ needs as the result of a disability to which they had now adapted. Sensitive approaches that foster independence may enable patients to ‘express’ needs that are amenable to help without disturbing the adaptive equilibrium they have achieved.Trial registration numberNCT01650480.

Objectives: This study explores the narrative accounts of chronic obstructive pulmonary disease (COPD) to identify events that potentially could act as triggers for provision of supportive\ud and palliative care. Trigger events must have meaning for the patient/carer, be visible to professionals, and have value in provoking useful actions.\ud \ud Methods: A purposive sample of people with severe COPD, and their informal and professional carers, was recruited from primary/secondary care in Scotland. Indepth participant-led interviews allowed people to tell their illness story. Events occurring throughout the individual’s account of the COPD journey were identified, and analysed thematically with regard to the meaning, visibility and use as potential \ud triggers.\ud \ud Results: Events identified from 92 transcripts (21 patients, 13 family carers, 18 professionals) punctuated the disease trajectory and crossed multiprofessional boundaries of care. These\ud reflected advancing disease (increasing carer burden, becoming housebound, appointment frequency, increasing burden of disease, shifting priorities of care) or were an intervention addressing the consequences of advancing disease (requesting disabled parking, home adaptations, hospital admissions). Despite being meaningful in terms of increasing disability, many were invisible to professionals. Others were isolated events symptomatic of wider, ongoing disability which could potentially have use as triggers. \ud \ud Conclusions: Meaningful events can be identified within the story of COPD which reflect wider needs, are clearly visible to alert professionals, and be of use in terms of potentially guiding supportive interventions. To achieve this level of usefulness, services will need to promote health and social care integration with clear processes to facilitate holistic\ud assessment when a trigger is detected.

Background. Current models of post-treatment cancer care are based on traditional practices and clinician preference rather than evidence of benefit. Objectives. To assess the feasibility of using a structured template to provide holistic follow-up of patients in primary care from cancer diagnosis onwards. Methods. A two-phase mixed methods action research project. An electronic Cancer Ongoing Review Document (CORD) was first developed with patients and general practitioners, and used with patients with a new diagnosis of cancer. This was evaluated through documentary analysis of the CORDs, qualitative interviews with patients, family carers and health professionals and record reviews. Results. The records of 107 patients from 13 primary care teams were examined and 45 interviews conducted. The document was started in 54% of people with newly diagnosed cancer, and prompted clear documentation of multidimension needs and understanding. General practitioners found using the document helped to structure consultations and cover psychosocial areas, but they reported it needed to be better integrated in their medical records with computerized prompts in place. Few clinicians discussed the review openly with patients, and the template was often completed afterwards. Conclusions. Anticipatory cancer care from diagnosis to cure or death, ‘in primary care’, is feasible in the UK and acceptable to patients, although there are barriers. The process promoted continuity of care and holism. A reliable system for proactive cancer care in general practice supported by hospital specialists may allow more survivorship care to be delivered in primary care, as in other long-term conditions.

BACKGROUND: General practices in the United Kingdom are encouraged to have a protocol for the identification of carers and a mechanism for social care referral. However, a minority of carers are identified and those caring for someone with a terminal illness often cope until the situation becomes overwhelming. Earlier identification could enable more timely support. The aim of this project was to model and pilot a systematic approach to identify, assess and support carers of people with supportive and palliative care needs in primary care.METHOD: The intervention was modelled on the Medical Research Council complex intervention framework with a preliminary theoretical phase, which has been reported elsewhere. In this study, which lasted 12 months, four general practices were recruited. Each practice identified a 'carer liaison' person to take the lead in identifying carers, followed by assessment and support using a toolkit modelled from the earlier phase. Qualitative evaluation interviews were conducted with carers who had received the intervention and the carer liaisons and general practitioners in the pilot practices. A stakeholder event was held to disseminate and deliberate the findings.RESULTS: The practices' populations ranged from 5840 to 10832 patients and across the four practices, 83 carers were identified. Thirty six carers were identified from practice registers (disease - 16; palliative care - 9; carer - 11; advanced care plan - 12), whilst 28 were identified opportunistically by practice staff at appointments or at home. Seven carers self-identified. Overall, 81 carers received the carer pack and 25 returned the Carer Support Needs Assessment Tool (CSNAT) form. Eleven carers received a follow up call from the practice to discuss support and 12 were also referred/signposted for support. Qualitative interviews suggest carers valued connection with their practices but the paperwork in the toolkit was onerous.CONCLUSION: This approach to identifying and supporting carers was acceptable, but success was dependent on engagement within the whole practice. Carers did not tend to self-identify, nor ask for help. Practices need to proactively identify carers using existing opportunities, resources and computer systems, and also adopt a public health approach to raise carer awareness and perceived support within their communities.

Objective: To understand factors influencing the process of adjustment to a diagnosis of glioma. Methods: Twenty-six patients and 23 relatives took part in 80 in-depth qualitative interviews conducted at five key stages: before formal diagnosis, at start of treatment, on completion of treatment, 6 months post treatment, and post bereavement. Results: High levels of distress were reported, particularly preceding and following diagnosis. Many participants described lack of specific information in the early part of their illness and a lack of clarity about what was wrong and what was going to happen next. They often desired more procedural information, as well as information about their condition and treatments available, although there was variation in the timing of when people were ready to hear this. Receiving reassurance and support was essential to patients and their relatives to help them come to terms with their illness. This need was particularly acute during the early phase of the illness when distress and uncertainty were at a peak and lessened over time as people adjusted to their illness. Conclusions: Offering suitable information about what to expect early and frequently in a supportive way is much appreciated by patients. There is an important balance between ensuring that patients and their families are fully informed and fostering adaptive coping that allows for hope. Copyright © 2012 John Wiley & Sons, Ltd.

Objectives To understand the perspectives of people with severe chronic obstructive pulmonary disease (COPD) as their illness progresses, and of their informal and professional carers, to inform provision of care for people living and dying with COPD. Design Up to four serial qualitative interviews were conducted with each patient and nominated carer over 18 months. Interviews were transcribed and analysed both thematically and as narratives. Participants 21 patients, and 13 informal carers (a family member, friend, or neighbour) and 18 professional carers (a key health or social care professional) nominated by the patients. Setting Primary and secondary care in Lothian, Tayside, and Forth Valley, Scotland, during 2007-9. Results Eleven patients died during the study period. Our final dataset comprised 92 interviews (23 conducted with patient and informal carer together). Severe symptoms that caused major disruption to normal life were described, often in terms implying acceptance of the situation as a "way of life" rather than an "illness." Patients and their informal carers adapted to and accepted the debilitating symptoms of a lifelong condition. Professional carers' familiarity with the patients' condition, typically over many years, and prognostic uncertainty contributed to the difficulty of recognising and actively managing end stage disease. Overall, patients told a "chaos narrative" of their illness that was indistinguishable from their life story, with no clear beginning and an unanticipated end described in terms comparable with attitudes to death in a normal elderly population. Conclusions Our findings challenge current assumptions underpinning provision of end of life care for people with COPD. The policy focus on identifying a time point for transition to palliative care has little resonance for people with COPD or their clinicians and is counter productive if it distracts from early phased introduction of supportive care. Careful assessment of possible supportive and palliative care needs should be triggered at key disease milestones along a lifetime journey with COPD, in particular after hospital admission for an exacerbation.

Background Since 2012, all GP practices across Scotland have been supported to take a systematic approach to end-of-life care, by helping them to identify more patients for palliative care through a Palliative Care Directed Enhanced Service (DES). We aimed to understand the impact of this initiative. Methods Routine quantitative data from the 2012/13, and 2013/14 DES were collected from regional health boards, analysed and discussed. Qualitative data were collected from a sample of 2012/13 DES returns and analysed using Thematic Analysis. Results Data were received from 512 practices in nine Scottish Health boards for the 2012-13 DES and 638 practices in 11 Health boards for 2013-14. A sample of 90 of the returns for 2012-13 was selected for qualitative analysis. In 2012-13, 72 % of patients who died of cancer were listed on the palliative care register (PCR) before death while 27 % of patients who died as a result of non-malignant conditions were listed on the PCR. In 2013-14, cancer identification remained the same but identification of people dying with other long-term conditions had improved to 32.5 %. We identified several key issues needed to improve palliative care in the community. The need for training to identify patients with palliative care needs (particularly non-cancer); communication skills training; improvements in sharing information across the NHS; under-resource of and lack of coordination with district nurses; improvements in information technology; and tools for working with enlarged palliative care registers. Conclusions The DES helped more patients with long-term conditions (LTC) receive generalist palliative care. Approaching generalist palliative care as anticipatory care could facilitate communication between GPs and patients/families and remove some barriers to early identification of palliative care needs. Improvement of information technology and use of identification tools like the SPICT™ may improve professionals’ communication with each other and help may make identification and management of patients easier. Electronic supplementary material The online version of this article (doi:10.1186/s12875-015-0391-x) contains supplementary material, which is available to authorized users.

Background: Services for people with heart failure are under-developed. The perspectives of patients, their informal and professional carers should inform development of service models. Aim: To describes how patients and carers view health and social care in the last year of life. Methods: Qualitative, serial interviews at three monthly intervals with 20 patients (New York Heart Association Grade IV heart failure), their main informal carer, general practitioner and other key professionals in an urban, community setting in SE Scotland. These were tape-recorded, and analysed with the aid of the qualitative data analysis package NVivo and techniques of narrative analysis. Results: 112 interviews comprised; patients (50), informal carers (27), professionals (30), bereavement interviews (5). Patients with heart failure and their carers felt unsupported by services, and had little understanding of their condition, treatment aims or prognosis. Quality of life was severely compromised by physical limitations and psychological morbidity. Psychosocial care, patient and carer education, co-ordination of care between primary and secondary sectors and with social services was generally poor. Many patients had no access to a heart failure nurse specialist. A palliative care approach was rarely apparent. Conclusions: Patients with advanced heart failure may benefit from specific models of care with strategic planning across primary and secondary care, and involvement of health and social care services and specialist palliative care providers. Models of care, which focus on quality of life, symptom control, and psychosocial support for patients and their families while continuing active treatment, should be developed.

BACKGROUND:Despite a well-recognised burden of disabling physical symptoms compounded by co-morbidities, psychological distress and social isolation, the needs of people with severe chronic obstructive pulmonary disease (COPD) are typically poorly addressed. AIM:To assess the effectiveness of interventions designed to deliver holistic care for people with severe COPD. METHODS:We searched 11 biomedical databases, three trial repositories (January 1990-March 2012; no language restrictions) and contacted international experts to locate published, unpublished and in-progress randomised controlled trials (RCTs), quasi-RCTs and controlled clinical trials (CCTs) that investigated holistic interventions to support patients with severe COPD in any healthcare context. The primary outcome was health-related quality of life (HRQoL). Quality assessment and data extraction followed Cochrane Collaboration methodology. We used a piloted data extraction sheet and undertook narrative synthesis. RESULTS:From 2,866 potentially relevant papers, we identified three trials: two RCTs (from United States and Australia), and one CCT (from Thailand): total 216 patients. Risk of bias was assessed as moderate in two studies and high in the third. All the interventions were led by nurses acting in a co-ordinating role (e.g. facilitating community support in Thailand, providing case-management in the USA, or co-ordinating inpatient care in Australia). HRQoL improved significantly in the Thai CCT compared to the (very limited) usual care (p

The following quotes represent goals that most palliative nurses and researchers aspire to

Interviewing patients over the course of their illness can give a much better picture of their experience than single interviews, but the approach is rarely used. Scott Murray and colleagues explain how to get the most from it

In most economically developed countries, patients, their informal and professional carers and policy makers are calling for more care in the community.To involve patients with cancer, and their carers, in designing a framework for providing effective cancer care in primary care.Two discussion groups comprising 18 people with current cancer and carers met monthly over a year in the south of Scotland.Patients with cancer and their carers identified five key times in the cancer journey as being especially significant from their perspective: around diagnosis, during treatment, after discharge, at recurrence and the final weeks. At each key time, there were five major issues of concern: information, communication, equity, a holistic approach and patient-centred care. Using these, the group members developed a checklist of recommended interventions for each stage in the illness trajectory and suggested how they might be implemented in primary care. Proactive and ongoing contact, if wished by the patient, was considered the central plank of cancer care in the community.Patients with cancer and their carers believe that there is an important and unique role for primary care in offering continuity of care and information that is patient-centred and holistic, throughout the cancer trajectory, from first presentation. This study successfully brought patient, carer and professional perspectives to the development of a care framework for primary care.

Typical trajectories of physical decline have been described for people with end-stage disease. It is possible that social, psychological, and spiritual levels of distress may also follow characteristic patterns. We sought to identify and compare changes in the psychological, social, and spiritual needs of people with end-stage disease during their last year of life by synthesizing data from two longitudinal, qualitative, in-depth interview studies investigating the experiences and needs of people with advanced illnesses. The subjects were 48 patients with advanced lung cancer (n = 24) and heart failure (n = 24) who gave a total of 112 in-depth interviews. Data were analyzed within individual case studies and then cross-sectionally according to the stage of physical illness. Characteristic social, psychological, and spiritual end-of-life trajectories were discernible. In lung cancer, the social trajectory mirrored physical decline, while psychological and spiritual well-being decreased together at four key transitions: diagnosis, discharge after treatment, disease progression, and the terminal stage. In advanced heart failure, social and psychological decline both tended to track the physical decline, while spiritual distress exhibited background fluctuations. Holistic end-of-life care needs to encompass all these dimensions. An appreciation of common patterns of social, psychological, and spiritual well-being may assist clinicians as they discuss the likely course of events with patients and carers and try to minimize distress as the disease progresses.

When people with life threatening illnesses and their carers ask about prognosis (“How long have I got?”), they are often doing more than simply inquiring about life expectancy. Within this question is another, often unspoken, question about likely patterns of decline (“What will happen?”). One aid to answering both questions may be through the use of typical illness trajectories. Thinking in terms of these trajectories provides a broad timeframe and patterns of probable needs and interactions with health and social services that can, conceptually at least, be mapped out towards death. Such frameworks may help clinicians plan and deliver appropriate care that integrates active and palliative management. If patients and their carers gain a better understanding by considering illness trajectories this may help them feel in greater control of their situation and empower them to cope with its demands. An important implication for service planners is that different models of care will be appropriate for people with different illness trajectories. We review the main currently described illness trajectories at the end of life and draw out key clinical implications. We searched our own database of papers, conducted a Medline search, and approached experts for additional published references (further details available from SAM). We also re-examined primary data relating to illness trajectories from our previous studies investigating the palliative care needs of people with advanced lung cancer and heart failure.1 ### Different trajectories for different diseases A century ago, death was typically quite sudden, and the leading causes were infections, accidents, and childbirth. Today sudden death is less common, particularly in Western, economically developed, societies. Towards the end of life, most people acquire a serious progressive illness—cardiovascular disease, cancer, and respiratory disorders are the three leading causes—that increasingly interferes with their usual activities until death. Three distinct illness trajectories have been described so far for people …

Background: We set out to explore whether patients with life-threatening illnesses and their informal carers consider they experience significant spiritual needs, in the context of their overall needs, how spiritual concerns might vary by illness group and over the course of the illness, and how patients and their carers think they might be supported in addressing spiritual issues. Methods: Three-monthly qualitative interviews for up to one year with 20 patients with inoperable lung cancer and 20 patients with end-stage heart failure and their informal carers. Results: We conducted 149 in-depth interviews. Spiritual concerns were important for many patients in both groups, both early and later in the illness progression. Whether or not patients and carers held religious beliefs, they expressed needs for love, meaning, purpose and sometimes transcendence. The different experiences of lung cancer and heart failure raised contrasting patterns of spiritual issues and needs. Carers voiced their own spiritual needs. Patients and carers were generally reluctant to raise spiritual issues, but many, in the context of a developing relationship with the researcher, were able to talk about such needs. Conclusions: Spiritual issues were significant for many patients in their last year of life and their carers. Many health professionals lack the necessary time and skills to uncover and address such issues. Creating the opportunity for patients and carers to discuss spiritual issues, if they wish, requires highly developed communication skills and adequate time.

Objective To describe the experiences of illness and needs and use of services in two groups of patients with incurable cancer, one in a developed country and the other in a developing country.Design Scotland: longitudinal study with qualitative interviews. Kenya: cross sectional study with qualitative interviews.Settings Lothian region, Scotland, and Meru District, Kenya.Participants Scotland: 20 patients with inoperable lung cancer and their carers. Kenya: 24 patients with common advanced cancers and their main informal carers.Main outcome measures Descriptions of experiences, needs, and available services.Results 67 interviews were conducted in Scotland and 46 in Kenya. The emotional pain of facing death was the prime concern of Scottish patients and their carers, while physical pain and financial worries dominated the lives of Kenyan patients and their carers. In Scotland, free health and social services (including financial assistance) were available, but sometimes underused. In Kenya, analgesia, essential equipment, suitable food, and assistance in care were often inaccessible and unaffordable, resulting in considerable unmet physical needs. Kenyan patients thought that their psychological, social, and spiritual needs were met by their families, local community, and religious groups. Some Scottish patients thought that such non-physical needs went unmet.Conclusions In patients living in developed and developing countries there are differences not only in resources available for patients dying from cancer but also in their lived experience of illness. The expression of needs and how they are met in different cultural contexts can inform local assessment of needs and provide insights for initiatives in holistic cancer care.

OBJECTIVE: To compare the illness trajectories, needs, and service use of patients with cancer and those with advanced non-malignant disease.DESIGN: Qualitative interviews every three months for up to one year with patients, their carers, and key professional carers. Two multidisciplinary focus groups.SETTING: Community based. PARTICIPANTS: 20 patients with inoperable lung cancer and 20 patients with advanced cardiac failure and their main informal and professional carers.MAIN OUTCOME MEASURES: Perspectives of patients and carers about their needs and available services. RESULTS: 219 qualitative interviews were carried out. Patients with cardiac failure had a different illness trajectory from the more linear and predictable course of patients with lung cancer. Patients with cardiac failure also had less information about and poorer understanding of their condition and prognosis and were less involved in decision making. The prime concern of patients with lung cancer and their carers was facing death. Frustration, progressive losses, social isolation, and the stress of balancing and monitoring a complex medication regimen dominated the lives of patients with cardiac failure. More health and social services including financial benefits were available to those with lung cancer, although they were not always used effectively. Cardiac patients received less health, social, and palliative care services, and care was often poorly coordinated.CONCLUSIONS: Care for people with advanced progressive illnesses is currently prioritised by diagnosis rather than need. End of life care for patients with advanced cardiac failure and other non-malignant diseases should be proactive and designed to meet their specific needs.

Dear Sirs, We have read with interest the paper by Epiphaniou et al.,1 which highlights the challenge of providing care for people with very severe chronic obstructive pulmonary disease (COPD) as they approach the end of their life, and agree with the response from Crawford et al.2 when they highlight that a key problem is ‘defining a transition point for the initiation of end-of-life care services’. However, we disagree with their conclusion that the solution is to try and identify yet more prognostic indicators in an attempt to identify a transition point. Our qualitative data3 found that identifying a time point for transition to palliative care had little resonance for people with COPD or their clinicians as they lived with their lifelong condition with its imperceptibly slow but inexorable decline. Our conclusion is echoed in a recent systematic synthesis of the experiences of living and dying with COPD,4 which conceives the trajectory of COPD as a ‘roller coaster’, with ‘no one specific event demarcating the ‘end-of-life’ stage, except perhaps the final acute exacerbation, which is difficult to predict and may be relatively brief’. Starting from the perspective of services designed for cancer, and looking in ever more detail for a transition point that is not there, is unlikely to be the solution. Maybe we need to take a step back, listen to the messages from the extensive qualitative literature3–5 and ask ourselves ‘if we started with a blank sheet of paper, how would supportive care for people with COPD look?’ We might then concentrate on developing services that integrate supportive care into the routine care of people living (perhaps for many years) with severe COPD.

Introduction Most patients receive palliative care only in the last two months of life. The use of information technology currently in place in general practices provides an opportunity to identify people for supportive and palliative care at an earlier stage. Aim(s) and method(s) To assess the impact and acceptability of a primary care electronic record search to identify patients with unmet palliative care needs. Methods: A computer record search was developed and tested in fifteen general practices in two Scottish health boards. A sub-set of patients identified by the search were selected for further review and care planning by GPs. Quantitative and qualitative data were collected to assess the impact of the search results on practice behaviour and attitudes towards the search among professionals and patients. Results The electronic record search successfully identified candidate patients for palliative care, some of whom the practice reviewed and identified for palliative care. Starting an Anticipatory Care Plan or electronic record sharing with Out of Hours services were the most common actions GPs took with patients who were reviewed after identification by the search. Conclusion(s) Electronic searching of primary care records can identify a shortlist of patients to assess for palliative care needs. Regularly producing such lists at team meetings should increase the number of non-malignant patients on palliative care registers. However GP and patient attitudes towards the taboo words “palliative care” mean that this will only lead to action if “supportive” care options that do not require the label “palliative care” are made available.

Introduction In the UK, the incidence of liver disease is increasing dramatically and by 2030 is predicted to kill more people than heart disease. In order to effectively treat this growing patient population we need to understand their experiences. However, research in this area is still underdeveloped. Aims and Methods To better understand the experiences, goals and support needs of patients with chronic liver failure, and to what extent existing services are perceived to meet these. We recruited 15 patients with advanced liver disease with a range of aetiologies. Up to three in-depth interviews are undertaken with patients and their informal carers over the course of 1 year. One-off interviews are also undertaken with their professional carers. The data are analysed thematically using Grounded Theory and NVivo 9. Results Initial results indicate a high level of unmet physical needs and comorbidities. Considerable uncertainty, anxiety and confusion exist amongst patients regarding their disease and its likely progression. Interprofessional and doctor-patient communication is challenging, and advance care planning largely absent. Conclusions This study is the first serial interview study of people with advanced progressive liver disease. They have a high and prolonged burden of physical, social and psychological unmet needs, and like heart failure and COPD patients receive much less support and palliative care than cancer sufferers.

Introduction and Objectives People with severe COPD have a long-recognised burden of disabling physical symptoms compounded by co-morbidity, psychological distress and social isolation. We aimed to review the effectiveness of interventions designed to deliver holistic care compared to usual care for people with severe COPD. Methods We searched 11 international electronic databases, three trial repositories and contacted a panel of international experts to locate published, unpublished and in-progress randomised controlled trials (RCTs), quasi-RCTs and controlled clinical trials (CCTs) that investigated holistic interventions designed to support patients with severe COPD in any healthcare context. Date range January 1990–March 2012; no language or geographical restrictions. Quality assessment and data extraction followed the Cochrane Collaboration method. Health-related quality of life (HRQoL) was the primary outcome. We used a piloted data extraction sheet and undertook narrative synthesis. Results From 2,866 potentially relevant papers, three trials met our inclusion criteria: two RCTs (from United States and Australia), and one CCT (from Thailand) studying a total of 216 patients. Critical appraisal identified a moderate (one RCT and the CCT) or high (one RCT) risk of bias. All interventions were led by nurses acting in a co-ordinating role (e.g. facilitating community support in Thailand, providing case-management in the US, or co-ordinating inpatient care in Australia). The community-based intervention in Thailand significantly improved HRQoL at three months compared to (limited) usual care (St George’s Respiratory Questionnaire: intervention: 30.3±19.4 vs control 52.4±21.3 p Conclusions Some 15 years after reports first highlighted the substantial unmet needs of people with severe COPD, we have been unable to find robust trial evidence about interventions to address those needs. There is an urgent need to develop and evaluate interventions to deliver or enhance holistic care and improve the quality of life of people with severe COPD. Funding Dunhill Medical Trust. HP is supported by a PCRCA Fellowship (CSO, Scottish Government).

Background There is great interest to explore best models of collaborative cancer care, with specialists and Primary Care work together. In a study evaluating an electronic cancer ongoing record in primary care, the research team needed to display and overview a large amount of diverse data from clinical records, hospital letters and study interviews. Innovative techniques were required to understand the complexities of patient experiences involved. Aims To investigate the use of timelines to help display, overview and analyse a complex dataset in order to examine patients9 experiences and the relationships between primary and secondary care. Methods General Practice case note reviews were carried out for 106 patients who had received a new diagnosis of cancer in the previous 12 months. Data concerning each patient was extracted into a form designed for the study. Timelines were created in Microsoft Visio, displaying cancer related consultations with clinicians in primary care (home visits, surgery consultations and phone calls) and secondary care (outpatient clinics, inpatient admissions, outpatient treatments). Results In addition to cancer related primary care appointments, all postdiagnosis primary care consultations were depicted, with additional annotations if co-morbidities were the main reason for consultation, to provide context. Relevant prediagnosis appointments, from initial presentation with symptoms, were included. The timelines were used to aid discussion in meetings of the project team and advisory group and in presentations of the study findings. Discussion The timelines provide a visualisation of patients9 journeys that incorporated a diverse dataset from a range of sources, including case reviews and interview data. In some cases they highlighted the ways in which patients may recall consultations differently from health professionals9 clinical records. Patient timelines are a useful technique to add to the health services research toolbox.

Introduction There is a little consensus on how to manage the supportive and palliative care needs of people with lung cancer once they have completed initial treatment. We aimed to gain insights into the perspectives of clinicians and service users as to how primary care could provide better care in collaboration with lung cancer specialists. Methods We conducted a qualitative study encompassing (a) telephone interviews (84) with healthcare professionals from four UK healthcare authorities, recruited through primary care research networks and other professional contacts and working in primary, secondary and palliative care, and (b) focus groups (4) with lung cancer patients and carers recruited through the Roy Castle Foundation. Interviews and focus groups were digitally recorded, transcribed and entered into NVivo for thematic analysis, initially from different perspectives and then synthesised across the whole data set. Results Lung cancer care is currently ‘shared’ rather than ‘integrated’ across heath care sectors. Debates about follow-up care tend to make a distinction between clinical care (provided in hospital by specialists) and supportive care (provided in the community by generalists) and there are contested ideas about where best to follow-up lung cancer patients who are relatively ‘stable’. Psycho-social support, support for carers and communication between primary and secondary care were identified as potential areas for development. Conclusion Lung cancer follow-up care is characterised by a range of tensions which must be resolved if primary care is to play an optimum role in providing follow-up care and support for lung cancer patients and their carers.

Objective To assess if family care givers of patients with lung cancer experience the patterns of social, psychological, and spiritual wellbeing and distress typical of the patient, from diagnosis to death. Design Secondary analysis of serial qualitative interviews carried out every three months for up to a year or to bereavement. Setting South east Scotland. Participants 19 patients with lung cancer and their 19 family carers, totalling 88 interviews (42 with patients and 46 with carers). Results Carers followed clear patterns of social, psychological, and spiritual wellbeing and distress that mirrored the experiences of those for whom they were caring, with some carers also experiencing deterioration in physical health that impacted on their ability to care. Psychological and spiritual distress were particularly dynamic and commonly experienced. In addition to the "Why us?" response, witnessing suffering triggered personal reflections in carers on the meaning and purpose of life. Certain key time points in the illness tended to be particularly problematic for both carers and patients: at diagnosis, at home after initial treatment, at recurrence, and during the terminal stage. Conclusions Family carers witness and share much of the illness experience of the dying patient. The multidimensional experience of distress suffered by patients with lung cancer was reflected in the suffering of their carers in the social, psychological, and spiritual domains, with psychological and spiritual distress being most pronounced. Carers may need to be supported throughout the period of illness not just in the terminal phase and during bereavement, as currently tends to be the case.

A better understanding of the needs of patients and their carers can help improve services. Marilyn Kendall and colleagues describe how to conduct multiperspective studies.