Background Lung cancer survival rates are poor and the vast majority of patients receive palliative treatment only. Assessment of the patient experience is extremely important in this group, however relatively little is currently known in this area. For the first time at a national level the Improving Lung Cancer Outcomes Project (ILCOP) will collect patient reported experience data using a tool designed specifically for lung cancer patients. We describe the development of this measure, in particular the key areas of the patient experience as identified by lung cancer patients and carers.

Methods The views of a wide range of lung cancer patients and carers on their healthcare experience from diagnosis through to treatment were obtained by the Roy Castle Lung Cancer Foundation and the National Lung Cancer Forum for Nurses via telephone interviews, email and postal questionnaires, and a targeted focus group. Key themes were identified and mapped to previously validated questions from the national cancer survey (with permission of Picker Institute). Macmillan Cancer Support advised on questionnaire design and the final version was tested by a further group of patients.

Results The key areas of the patient experience were reported as communication, privacy, respect and dignity, support for emotional and physical symptoms, and information. These domains were mapped to 12 multiple choice type questions from the national cancer survey. Two free text questions relating to areas of good practice and areas for improvement were added. Testing demonstrated that the questionnaire was straightforward, easy to understand and covered the areas that were most important to patients and carers. The six questionnaires sent out in the pilot phase were completed appropriately and returned the correct address.

Conclusions We have identified the key areas of the patient experience for a wide range of lung cancer patients and carers which we have successfully incorporated into a new lung cancer patient reported experience measure. In addition to guiding quality improvement work in the national ILCOP, this questionnaire could be used by local lung cancer teams to assess the patient experience at trust level.