How do patients with malignant brain tumors experience general practice care and support? Qualitative analysis of English Cancer Patient Experience Survey (CPES) data

BACKGROUND: English Cancer Patient Experience Survey (CPES) data show patients with brain cancer report the least-positive experiences of general practice support. We aimed to understand these findings by identifying the issues described in qualitative survey feedback and suggest how care may be improved. METHODS: We reviewed 2699 qualitative comments made to open questions about what was good or might be improved about National Health Service care between 2010 and 2014. We identified 84 (3%) specific comments about general practice care and used open coding and framework analysis to develop a thematic framework. RESULTS: We identified 3 key themes and 12 subthemes: first, the experience of initial diagnosis by a general practitioner (GP), including apparent complexity of making the diagnosis, apparent slowness in referral for investigation, referral made by patient or family, delay in receiving scan results, and whether the GP quickly identified the problem and referred to a specialist; second, the experience of care and support from the general practice, including lack of supportive response from the GP, lack of follow-up care from the GP, lack of family involvement by the GP, lack of GP knowledge about management, and whether the GP responded in a supportive way to the diagnosis; and third, the experience of overall coordination in care, including lack of communication between the hospital and general practice and good communication about the care plan. CONCLUSION: Qualitative responses from patients with brain cancer reveal their needs for better emotional and practical support within primary care. Suggestions include increasing the speed of initial referral for investigation, the depth of discussion about diagnostic difficulties, and developing coordinated care plans with cancer centers.