Why do people with chronic disease not contact consumer health organisations? A survey of general practice patients

Aim Consumer health organisations (CHOs) are non-profit or voluntary sector organisations that promote and represent the interests of patients and carers affected by particular conditions. The purpose of this study was to examine, among patients with chronic disease, what differentiates those who contact CHOs from those who do not and what stops people from making contact. Background CHOs can enhance people's capacity to manage chronic disease by providing information, education and psychosocial support, but are under-utilised. Little is known about barriers to access. Methods Data were from a baseline telephone survey conducted as part of a randomised trial of an intervention to improve access to CHOs. Participants constituted a consecutive sample of 276 adults with diagnosed chronic disease recruited via 18 general practitioners in Brisbane, Australia. Quantitative survey items examined participants' use and perceptions of CHOs and a single open-ended question explored barriers to CHO use. Multiple logistic regression and thematic analysis were used. Findings Overall, 39% of participants had ever contacted a CHO for their health and 28% had contacted a CHO specifically focussed on their diagnosed chronic condition. Diabetes, poorer self-reported physical health and greater health system contact were significantly associated with CHO contact. The view that 'my doctor does it all' was prevalent and, together with a belief that their health problems were 'not serious enough', was the primary reason patients did not make contact. Conclusion Attitudinal and system-related barriers limit use of CHOs by those for whom they are designed. Developing referral pathways to CHOs and promoting awareness about what they offer is needed to improve access