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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.
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.
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.
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.
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.
To assess whether a print-based intervention led to increased contact with consumer health organisations (CHOs) by general practice patients with chronic disease.
CHOs can enhance people's capacity to manage chronic illness by providing information, education and psychosocial support. However, these organisations appear to be grossly under-utilised by patients and clinicians.
A total of 276 patients completed a computer-assisted telephone interview before randomisation to an intervention (n = 141) or control (n = 135) group. The intervention consisted of mailed printed materials designed to encourage contact with a CHO relevant to the patient's main diagnosed chronic condition. Follow-up interviews were conducted 4 and 12 months later.
Patients with conditions other than diabetes who received the intervention were twice as likely as those in the control group to contact a consumer health organisation during the 12-month study period: 41% versus 21% (P < 0.001). No such effect was found for diabetes patients, probably because of pre-existing high levels of contact with diabetes organisations. The intervention package received strong patient endorsement. Low-intensity interventions may be effective in improving access to CHOs for patients with chronic disease.
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