Reporting cancer patients' experiences of care for quality improvement: analysis of 2000 and 2004 survey results for South East England

Background National surveys of patients' experiences of English cancer services found improvements between 2000 and 2004, particularly in the areas of information, communication and trust in professionals. Objectives We assessed the potential such surveys might have to stimulate service improvements by comparing their inclusion criteria, sampling and timing and by investigating how representative they were of patients registered with cancer in South East England. Where hospital trusts had data from 50 patients with the same cancer, we determined whether national improvements in six key areas held at hospital trust level. Design Data were extracted from the two national surveys and from the Thames Cancer Registry. Results The 2000 survey achieved a higher response rate, included a larger number of hospital trusts, and a wider range of cancer sites, but a lower proportion with lung cancer. Each survey sampled patients at different points following diagnosis, with a year elapsing between data collection and reporting. Compared with cancer registry data, breast cancer patients appeared most well-represented. Only three hospital trusts had sufficiently large samples to allow comparison over time. We found no change in experience in three of the key areas, but a significant decline from previously high scores in two. Conclusion To provide information useful for quality improvement future surveys will need to sample larger numbers of patients from most hospital trusts, including patients with less common cancers or receiving palliative care. Surveys should also sample patients at a consistent time after diagnosis and feedback results more rapidly to services.