Consumer health organisations for people with diabetes and arthritis: Who contacts them and why?

As health systems worldwide confront a growing prevalence of chronic disease, attention has focused on self-management as a strategy for delivering better outcomes for individuals and the health system. Consumer health organisations (CHOs) offer an existing, but under-utilised, resource for supporting self-management. This paper reports on a study designed to investigate the use of CHOs among people with diabetes and arthritis. A cross-sectional computer-assisted telephone interview survey was completed by 279 people who had made contact with one of four CHOs in Queensland, Australia, between July and August 2006. Self-reported data were collected on the participants' socio-demographic and health-related characteristics, pathways to, use and benefits of CHO contact and subsequent health actions. People contacted CHOs primarily to obtain further information about their condition or to access services or products. Most believed CHOs offered useful information relevant to their health and better ways to manage health problems. Almost half reported that they had started exercising or changed diet following contact. More than two-thirds of diabetes contacts had been directed to the organisation by a health professional, compared with less than one-third of those with arthritis. Correspondingly, people with diabetes reported shorter periods between diagnosis and contact and more prior contact with the organisation and were less likely to wish they had made contact earlier. The study concludes that people who contact CHOs report benefits and health actions conducive to better self-management. The integration of CHOs within the wider health system, as in the case of the diabetes CHO in this study, is likely to facilitate contact. Further attention to the role of these organisations as part of a comprehensive approach to chronic illness care is warranted