The Voice of Experience: Results from Cancer Control New Zealand's first national cancer care survey

Aims The 2009 Cancer Care Survey aimed to gather information from patients about their experiences receiving outpatient cancer care. Methods In mid-2009, Cancer Control New Zealand sent an NRC+Picker postal survey to a stratified sample of 3251 eligible adults, who had received outpatient cancer care between October 2008 and March 2009. Eight cancer treatment facilities across New Zealand provided patient lists from which potential respondents were selected. Results The final response rate to the survey was 68%. Most of the patients surveyed responded very positively to questions related to specialist care coordination (91% positive response; 95%CI: 90–93), the level of privacy (87% positive response; 95%CI: 85–89), and the dignity and respect provided by healthcare professionals (86% positive response; 95%CI: 85–88). However, patients tended to be much less positive about the level of information they received on the effects of cancer treatment on their day-to-day life (responses ranging between 30% and 40% positive) and the level of emotional support provided (36% positive response; 95%CI: 33–39). Responses from different cancer services tended to follow similar patterns, although for twelve questions there was at least a 20% difference in response between services. Conclusions Overall, patients rated their outpatient cancer care experiences as positive, but important gaps exist in the provision of information, emotional support, and treating patients within the context of their living situation. Cancer patient experience surveys can achieve high response rates and generate useful information on patient perceptions of their care. This data can be used to inform quality improvement efforts at both national and cancer treatment service levels. Quality cancer care has both technical and service components. Technical skills are critical to the effective diagnosis and treatment of disease. Service skills are required to holistically meet the needs of patients’ and address their expectations. A combination of technical and service skills is necessary to address cancer patients’ medical and non-medical needs and wants over the duration of a cancer journey. Patients’ experiences of care can be sought and reviewed with the goal of incorporating these voices of experience into quality improvement efforts. The importance of including the patient’s perspective in evaluations of care is reflected in key New Zealand government documents such as the New Zealand Health Strategy (2000), which has an underlying fundamental principle that there should be “active involvement of consumers and communities at all levels ”. 1 Additionally, two of the guiding principles of the New Zealand Cancer Control Strategy (2003) are that