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 partici pating 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 diagnose d with breast cancer in the previous 2 years (n = 313) received a letter ab out the study via their radiation oncologist. Consenting women were contact ed by the researchers to complete a telephone survey. The survey asked wome n to rate the importance of draft guidelines items, including discussing pr ognosis, providing information and choice, doctor-patient communication, pr eparation for surgery, providing emotional support, providing social suppor t, dealing with practical and cultural issues and continuity of care. One h undred and forty women (45%) completed the survey. The results indicated th at at least 50% of respondents rated 28 of the 52 items as 'essential' comp onents, 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 opini ons and identify priority areas for clinicians to address in providing psyc hosocial support to women with breast cancer.