Exploring patients’ experience of receiving information about cancer: A comparison of interview and questionnaire methods of data collection

Abstract

Patient information is widely regarded both as a resource and an entitlement: a means of ‘empowering’ patients to behave as ‘consumers’ of health care. Patient ‘satisfaction’ has come to be regarded as an important outcome of care. This article presents qualitative interview data regarding the experience of patient information provision and the results of a self-completed Information Satisfaction Questionnaire (ISQ) among patients and relatives affected by cancer. It considers the implications of the differences between these for service evaluation and current policy implementation promoting patients as informed and expert consumers of health care. The study findings contribute to growing evidence that the high rate of patients’ expressed satisfaction with different aspects of service provision as indicated by structured questionnaire responses is largely an artefact of the method of data collection. Accounts of negative experiences were common, but did not translate into expressed criticism or overt dissatisfaction. It is important that the limitations of such surveys are contextualized in relation to qualitative findings such as those of the present study. Especially in the face of serious and life-threatening illness, professional constructs such as ‘information delivery’, ‘satisfaction’ and ‘shared decision making’ have little resonance for many patients, who prefer to trust in professional expertise and to eschew the acquisition of specialist knowledge and active involvement in decisions about health care.