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.