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

Area of Science:

• Oncology
• Developmental Disabilities
• Healthcare Disparities

Background:

• Individuals with intellectual and developmental disabilities (IDD) experience significant disparities in cancer care.
• These disparities include delayed diagnosis, limited resources, and increased psychosocial distress, particularly in high-acuity settings.
• Existing care models often fail to accommodate the unique developmental and cognitive needs of patients with IDD.

Purpose of the Study:

• To describe an interdisciplinary, patient-centered approach for managing cancer in a patient with developmental delay.
• To highlight strategies for mitigating disparities in cancer care for individuals with IDD.

Main Methods:

• An interdisciplinary team utilized a patient-centered approach for a 34-year-old patient with developmental delay and metastatic adenocarcinoma.
• Key strategies included tailored education, preparation, and communication adapted to cognitive abilities.
• Family collaboration was integral in developing distress-reduction and compliance-improvement strategies.

Main Results:

• Simplified communication, visual aids, and consistent providers improved the patient's coping mechanisms.
• Psychosocial distress was significantly reduced.
• The patient successfully completed comprehensive oncologic evaluation and treatment.

Conclusions:

• Structured, interdisciplinary, patient-centered care models can effectively address disparities in cancer care.
• These approaches support equitable and compassionate care for individuals with IDD facing serious illnesses.
• The case underscores the importance of adapting care to the specific needs of patients with developmental and cognitive disabilities.