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.

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.