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.


OBJECTIVE
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.
Kendall
Marilyn
M
Division of Community Health Sciences: General Practice Section, University of Edinburgh, Edinburgh EH8 9DX, UK.
Boyd
Kirsty
K
Campbell
Christine
C
Cormie
Paul
P
Fife
Shirley
S
Thomas
Keri
K
Weller
David
D
Murray
Scott A
SA
D000328:Adult; D000368:Aged; D001294:Attitude to Health; D017028:Caregivers; D003142:Communication; D003695:Delivery of Health Care / Q000592:standards*; D004645:Empathy; D005260:Female; D017144:Focus Groups; D006287:Health Planning Guidelines; D006694:Holistic Health; D017051:Hospice Care / Q000592:standards; D006801:Humans; D008297:Male; D008875:Middle Aged; D020380:Needs Assessment; D009364:Neoplasm Recurrence, Local / Q000451:nursing / Q000523:psychology; D009369:Neoplasms / Q000451:nursing / Q000523:psychology; D010351:Patient Discharge; D018802:Patient-Centered Care; D011320:Primary Health Care / Q000592:standards*; D011369:Professional-Patient Relations; D012107:Research Design; D012606:Scotland