Developing a computerised search to help UK General Practices identify more patients for palliative care planning: a feasibility study.

BACKGROUND: Approximately 600,000 people die in the UK annually, usually after months or years of increasing debility. Many patients with advanced conditions are not identified for appropriate support before they die because they are not seen as having "palliative" care needs. General practice information technology systems can improve care by identifying patients with deteriorating health so that their healthcare needs can be reviewed more systematically and effectively. The aim was to develop and test a computerised search of primary care records in routine clinical practice as a tool to improve patient identification for a palliative care approach. METHODS: An iterative process of search design and testing followed by implementation and extended testing of the search output in clinical practice. A three-phase feasibility study: developing a computerised search, determining its ability to identify patients with deteriorating health from any advanced condition, and assessing how primary care clinicians use the results to improve patient care. The setting was twelve primary care teams in two Health Boards in Scotland. RESULTS: The search identified 0.6-1.7 % of patients in each practice who were not already on the palliative care register. Primary care clinicians judged that 30-60 % of these patients were at risk of dying or deterioration over the next 6-12 months. The most common action taken by GPs was to start an electronic anticipatory care plan. CONCLUSIONS: It is possible to significantly improve the identification of patients for palliative care needs assessment using a computerised search however barriers remain to GPs' finding it acceptable. Time-efficient systems were important as was a generic tool for anticipatory care planning not linked to 'palliative' care.

Proactive cancer care in primary care: a mixed-methods study.

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 U.K. 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.

Implementing a service users' framework for cancer care in primary care: an action research study.

BACKGROUND: We previously facilitated the development of a service-user designed framework for providing proactive care for people with cancer in the community. OBJECTIVE: To validate this framework in clinical practice. METHODS: We used an action research approach, helping five diverse general practices in the South of Scotland to implement the care framework. The process and outcomes were evaluated using in-depth interviews (18 patients and their family carers and 49 health professionals), participant observation and an ongoing dialogue between the practices, the research team and the original user groups. RESULTS: Practices implemented the framework in a variety of ways. In general, they used their own customized cancer register to improve communication within the practice and began to offer proactive care from a diagnosis of cancer, not just when the disease became advanced. Local innovations included an intranet-based register, information sheets and regular multidisciplinary meetings. Patients, family carers and professionals suggested that the framework had helped achieve continuity of care, teamwork, proactive care and improved support and information for patients and carers. CONCLUSIONS: Proactive personalized care can be improved in primary care for patients with cancer and their family carers through flexible adoption of a framework to embrace key characteristics of good care, as perceived by patients and carers, throughout the illness. Practices can achieve this by choosing approaches suited to their setting, experiences, structure and resources.

Developing a managed clinical network in palliative care: a realistic evaluation.

BACKGROUND: The attainment of evidence-based practice is at the fore of the international practice development agenda. It is therefore imperative that robust evaluation methodologies are available to scrutinise new approaches to service development. OBJECTIVES: This paper reflects on the merits and challenges of realistic evaluation design in the establishment of a new managed clinical network (MCN) approach to implementing a guideline concerned with the care of individuals with cancer-related pain. DESIGN AND METHODS: There were three evaluation points scrutinising three versions of the MCN approach to care. At each stage, steps were taken to identify the context, mechanisms and outcomes associated with the version of the model under scrutiny. Findings from patient-centred case studies fed into realistic evaluation interviews with the management group. SETTING: A rural primary care setting in Scotland. PARTICIPANTS: Three older men, their families, and the doctors and nurses providing direct care participated, along with 13 members of the network management group. RESULTS: The investigation highlighted the level of practitioner effort required to introduce the MCN approach to care. Progress was much slower than anticipated, at times frustrated by inexperience in change management and unfamiliarity with leading practice development projects and supporting practitioner learning. Issues to do with the age appropriateness of the evidence base in relation to the care of frail older people were also apparent. The professional group that experienced most role change were district nurses and community pharmacists. CONCLUSION: The collaborative approach nurtured by the realistic evaluation framework was found particularly helpful and there was consensus that the evaluation had become integral to the intervention itself. There were a number of methodological challenges and a need to limit the depth of 'realistic unravelling'. However, as a formative approach, in the messy world of interdisciplinary practice development, realistic evaluation proved a worthy design.

How do people with cancer wish to be cared for in primary care? Serial discussion groups of patients and carers.

BACKGROUND: In most economically developed countries, patients, their informal and professional carers and policy makers are calling for more care in the community. OBJECTIVES: To involve patients with cancer, and their carers, in designing a framework for providing effective cancer care in primary care. METHODS: Two discussion groups comprising 18 people with current cancer and carers met monthly over a year in the south of Scotland. RESULTS: 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. CONCLUSIONS: 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.

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.