Beyond the Diagnosis: Interdisciplinary,Patient-Centered Care for Young Adults With Intellectual Disability

Abstract

Background

Individuals with intellectual and developmental disabilities experience substantial disparities across the cancer care continuum, including delayed diagnosis, limited access to supportive resources, and heightened psychosocial distress. These challenges are intensified in high-acuity settings where care models are not adapted to their developmental and cognitive needs.

Methods

We describe an interdisciplinary, patient-centered approach to the care of a 34-year-old patient with developmental delay and metastatic adenocarcinoma. Key strategies emphasized education, preparation, and communication tailored to her cognitive abilities. Collaboration with her family informed effective strategies to reduce distress and improve compliance.

Results

Tailored interventions – including simplified communication, visual supports, and continuity of providers – improved the patient’s coping, reduced distress, and enabled completion of comprehensive oncologic evaluation and treatment.

Conclusions

This case demonstrates that structured, interdisciplinary, patient-centered approaches to care can mitigate disparities and support equitable, compassionate care for individuals with intellectual and developmental disabilities facing serious illness.