Health information exchange between doctors, persons with ID, and caregivers is a process

Mathilde Mastebroek, MD
Radboud University Medical Center, The Netherlands

Adequate sharing and communication of health information between people with intellectual disabilities (ID) and their family doctors (GPs) is very important, but also very challenging. People with ID may have problems in telling the doctor what is wrong, and in understanding or recalling the doctor’s words. Usually, caregivers are involved in the exchange of health information between people with ID and their healthcare providers. This doesn’t always guarantee that the right information is available to the right person at the right time. Lack of good quality health information may lead to problems in accessing healthcare, identifying health problems, and initiating appropriate action. This can have a negative influence on the health of individuals with ID. Many barriers to the provision of primary care to people with ID relate to problems in exchanging health information, for example communication difficulties and time constraints in consultations.

What did you do in your research?
We wanted to learn about different factors that may influence the exchange of health information in primary care settings. We searched the literature on healthcare access for people with ID, and looked for barriers and facilitators of the exchange of health information between GPs, people with ID, and their caregivers. In these articles, we looked for text passages that described barriers, facilitators, experiences, or perceptions relating to the communication, sharing, or retention of personalized health information. We analyzed these passages and identified themes that describe the factors influencing health information exchange.

What did you find out?
We found six major themes: 1) communication skills; 2) organizational factors; 3) record keeping and sharing; 4) health literacy and self-advocacy; 5) caregivers’ and health professionals’ knowledge; and 6) the involvement of third parties in health information exchange (i.e. presence of a carer at medical appointments with GP’s). All themes included both barriers and facilitating factors.

Most barriers related to: inadequate communication skills of both GPs and patients with ID, insufficient time during consultation, staff turnover and absence of caregivers during consultation, poor record keeping and sharing, low health literacy and advocacy skills among people with ID and caregivers, and a low level of GP knowledge concerning people with ID.

Facilitating factors particularly related to: appropriate communication skills of GPs, offering a double (medical) appointment time for individuals with ID, long-term relationships between caregiver/GP and person with ID, preparation for GP consultation by the individual with ID and their carer (by having enough background information prior to the appointment), central health record keeping, and adequate caregiver competencies in fulfilling support roles during and around consultation.

What are the take-home messages?
In this study, it became clear that exchange of health information is a matter not solely of communication during consultation, but also of processes taking place before and after a GP visit. This is important for the development of interventions to improve primary healthcare services for people with ID.

To learn more about these findings contact Mathilde Mastebroek or visit the Project Website (Dutch language only).

Full Journal Article
Mastebroek, M., Naaldenberg, J., Lagro-Janssen, A. L., & van Schrojenstein Lantman de Valk, H. (2014). Health information exchange in general practice care for people with intellectual disabilities—A qualitative review of the literature. Research in Developmental Disabilities, 35(9), 1978-1987.