Oncology nurses’ assessment of providing equitable care for patients with developmental disabilities.

Abstract

164 Background: Access to quality health care can be challenging, especially for people with developmental disabilities (PwDD). Developmental Disabilities (DD) occur before age 22 and include physical, learning, language, or behavioral impairments. Studies of training and experience of oncology nurses (RNs) who care for PwDD are limited. The purpose of this study was to explore to what extent RNs working in a community oncology practice are prepared to provide quality patient-centered care to patients with DD. Methods: As no tool exists to capture oncology RNs experiences caring for PwDD, a survey was developed with input from a group of oncology nurse experts. Both academic IRB and Privacy Board approvals were completed prior to recruitment. A Qualtrics survey link was shared with RNs and Advanced Practice RNs via email. Questions about nurses’ background, perceptions of clinic resources and accommodation and referral to clinical trials were included in the survey. Nurses were also presented with 3 scenarios of oncology patients who have either been blind since birth, have autism or cerebral palsy. RN respondents were asked how to care for them, what challenges might be encountered, and what resources would be available to them. Results: Usable surveys were completed by 122 RNs. 77 RNs cared for PwDD in a statewide Oncology practice, 81 RNs had previously cared for PwDD in any setting and 54 RNs have friends or family members with DD. Only 7 RNs reported no experience with PwDD. Seven nurses knew of PwDD who had participated in clinical trials. Themes identified through the qualitative analysis include Accommodations, Strategies, Communication and Referrals. Conclusions: This study provides an initial step in understanding how to reduce disparities for oncology patients with DD. Key elements revealed additional training needs, standardized facility accommodation needs, and advocacy for clinical trials participation. Through a team approach and engagement with patient advocacy groups, the challenge of engaging PwDD in clinical trials will be tackled. More training and resource education for RNs and staff regarding care of PwDD will be built and disseminated through a standardized process to bridge gaps to impact delivery of care.