Specialized medical care for people with intellectual disabilities: A retrospective cohort study in an outpatient ID practice

Abstract

People with intellectual disabilities (ID) experience complex medical care needs and high levels of multimorbidity. In mainstream healthcare, these needs might remain undetected leading to unmanaged health problems and avoidable deaths. In the Netherlands, general practitioners (GPs) can refer to specialized ID physicians when ID-specific expertise is required. Little is known about the characteristics of specialized medical care for people with ID. This study explores the characteristics of specialized medical care for people with ID, including the interplay between medical-, psychological-, and context-related problems. A retrospective cohort study using medical records of patients with ID who had visited the outpatient ID practice in Nijmegen, the Netherlands. Medical records (n = 128) were analyzed using descriptive statistics, focusing on (1) reasons for initial consultation, (2) health-related problems identified during initial consultation, and (3) disciplines involved following initial consultation. Analyses were performed separately for patients who were referred by a medical professional and patients who visited the practice for proactive health checks related to the etiological diagnosis. Patients often initially visit the outpatient ID practice for one type of complaint, most often psychological. Diverse, multiple, and interconnected problems were identified during specialized medical ID consultation. A range of specialist professionals (n = 25) were involved by the ID physician. The health-related problems of people with ID seen at the outpatient ID practice are diverse and interconnected, and originate from an interplay between medical-, psychological-, and context-related problems. This complexity is not mirrored in the reasons for referring to the outpatient ID practice. It is essential to go beyond medical views and assess health complaints in an integrated way, including the way ID can influence all levels (physical, mental, contextual) of the experienced health issue within the context of everyday life.