Optimizing essential, complex hematologic care for patients living with disabilities

Abstract

Abstract Background: People living with disabilities face unique challenges accessing care. Using stem cell transplantation (BMT) as an example, we investigated how to optimize essential, complex hematologic care delivery for patients (pts) living with disabilities. Methods: We conducted a mixed-method analysis to identify BMT pts living with disabilities & explore barriers they face to care. Our study team included those with lived experience as &/or expertise caring for people with disabilities. Starting in 7/2024, consecutive BMT pts at our Center were asked to report any physical/intellectual/sensory disabilities (clinicaltrials.gov NCT06431347), after an explanation re: the relevance of this information to their care. We retrospectively reviewed how identified disabilities were recorded/reported in the electronic health record (EHR) from initial BMT MD consult to discharge post-BMT. We also interviewed BMT pts with disabilities & their caregivers & providers & led a qualitative analysis to identify barriers/facilitators to care & develop best practices to optimize complex hematologic care delivery for pts with disabilities. Results: From 7/2024-7/2025, of 401 BMT pts who participated in the disability screening, 41 (10%; median age 64 yrs, range 23-76; 44% female; 37% non-White; 14 auto- & 27 allo-BMT) reported disabilities likely to impact care delivery: 20 physical, 5 intellectual, 15 sensory & 1 with a disability-related service animal. However, of these, only half (21/41, 51%) were discussed in the BMT pre-admission note or discharge summary (22/41, 54%) with less than half discussed in both (17/41, 41%). By disability category, intellectual disabilities were least commonly discussed in both notes (1/5, 20%), followed by sensory (5/15, 33%) & physical (10/20, 50%). Although most disabilities (33/41, 80%) were discussed in ≥1 BMT MD or allied healthcare note, 8/41 (20%) were not listed anywhere in the EHR: 1 physical (multiple digit loss), 2 intellectual (both learning disability), 5 sensory (4 hearing & 1 vision impairment). To explore care delivery in-depth, we interviewed 14 pts, 10 caregivers & 17 providers who shared lived experience as/caring for 41 BMT pts with disabilities (including peds & adult auto- & allo-BMT pts). 18 had physical disabilities: 7 used a wheelchair & 2 a walker/cane; 9 had missing limbs (8 lower & 1 upper extremity; 2 used prostheses), 1 spinal cord injury & 2 movement disorders. 14 had intellectual disabilities: 5 developmental disorders; 3 learning disabilities (1 ADHD, 2 dyslexia); 6 autism/neurodivergence. 7 had sensory disabilities: 3 visually & 4 hearing impaired. 2 had service animals. Qualitative analysis revealed 6 key domains impacting care for pts with disabilities: Disability stigma/bias; screening/documentation; autonomy/independence; barriers to care due to disability; accessibility/adaptability; & communication. Most participants described unique barriers to care due to disabilities. However, many pts were not asked & did not discuss their disabilities with the care team. Additionally, several did not share their disability due to fear of being treated differently or belief it was not relevant & consequently faced further hurdles to care. Pts described adaptive tools they employed, although independence/autonomy were frequently compromised by obstacles in accessing assistive devices/supports (eg placement/proximity of wheelchair/gait aids, hearing aids, prostheses; permission to use service animals). Pts with disabilities & their caregivers/providers shared examples of communication barriers & solutions. Based on these data, we generated detailed best practices to optimize complex hematologic care delivery to pts with disabilities, overall & for pts with specific physical, intellectual, or sensory disabilities. Recommendations included approaches to optimize pt disability data collection/recording/reporting, treatment eligibility assessment/decision making/preparations, pt-provider communication & provider-provider handover & pt safety & experience assessments/interventions.Conclusions: Our work will support stakeholders across hematology to advocate for policies/practices which uplift, empower & support pts with disabilities to receive essential complex hematologic care. Implementing these recommendations will help dismantle structural barriers to care, inform efforts to improve pt well-being & advance a more inclusive healthcare system for pts with disabilities.