Consumer participation in the development of psychosocial clinical practice guidelines: opinions of women with breast cancer

Clinical practice guidelines are playing an increasingly important role in defining quality care and consumers have a considerable interest in participating in the development of guidelines. The objective of this study was to explore consumer's perceptions of guideline items relating to psychosocial care of women with breast cancer, developed by Australia's National Health and Medical Research Council National Breast Cancer Centre. Women diagnosed with breast cancer in the previous 2 years (n = 313) received a letter about the study via their radiation oncologist. Consenting women were contacted by the researchers to complete a telephone survey. The survey asked women to rate the importance of draft guidelines items, including discussing prognosis, providing information and choice, doctor-patient communication, preparation for surgery, providing emotional support, providing social support, dealing with practical and cultural issues and continuity of care. One hundred and forty women (45%) completed the survey. The results indicated that at least 50% of respondents rated 28 of the 52 items as 'essential' components, with respondents identifying providing information and choice, and doctor-patient communication as the most important aspects of psychosocial care. The findings suggest the guidelines adequately reflect consumer opinions and identify priority areas for clinicians to address in providing psychosocial support to women with breast cancer.