Perceptions of health care need in lung cancer. Can prospective surveys provide nationally representative data?

This paper considers the potential of a prospective questionnaire survey to provide nationally representative data of perceptions of health care need. The paper focuses on methodological problems encountered during the study, reserving the discussion of key findings to further publications. Data were gathered from patients with lung cancer, lay carers and professionals from 24 randomly selected hospitals throughout the UK. A number of factors had an impact on the survey's potential to provide nationally representative data. These included an unanticipatedly high death rate of patients registered in hospitals as being in receipt of treatment or follow-up care. Of a potential sample of 785 patients identified as being alive by the participating hospitals prior to data collection, 319 (41%) were found to have died after checking with general practitioner surgeries. As a consequence of consultants declining to participate, or where they did not reply to any correspondence, eight hospitals were withdrawn from the study on the grounds of inability to gain access to a representative sample of patients. In conclusion, a retrospective design, supplemented by the views of patients would have ensured greater success in terms of patient response rate (45%) and representativeness of data. Nevertheless, the survey represents a first attempt at undertaking a national assessment of patients with lung cancer and has provided rich data drawn from patients' experiences of living with a diagnosis of lung cancer and its treatment.