Respondent-Reported Acceptability and Tolerability of a Nurse-Assisted, Self-Collected Human Papillomavirus (HPV) Cervical Cancer Screening Model in Adults With Intellectual and Developmental Disabilities: A Preliminary Report.

Background and objective Adults with intellectual and developmental disabilities (IDD) are screened for cervical cancer at substantially lower rates than adults without disabilities. Communication differences, sensory sensitivities, and difficulty tolerating speculum-based examination all contribute. Deferred screening is frequently recorded as patient refusal rather than as an unmet need for adapted care. Human papillomavirus (HPV) testing on self-collected vaginal specimens is now recognized as an acceptable screening option, but published implementation strategies for this population are limited. The objective of this study was to evaluate respondent-reported acceptability, tolerability, and level of assistance required for a nurse-assisted self-collected HPV screening model in an interdisciplinary primary care clinic serving adults with IDD. Methods We conducted a prospective, single-site, minimal-risk observational study at the Program for Adults with Intellectual and Developmental Disabilities (PAIDD) at University of Florida Health Jacksonville. Vaginal specimens for HPV testing were collected in the clinic by the patient under nurse guidance, with hands-on assistance from a trained program nurse or a caregiver as needed. The model also included structured pre-visit planning, an animated patient education video, and caregiver engagement. A structured post-visit survey administered in REDCap assessed the level and appropriateness of assistance, patient tolerance, observable distress, acceptability, and support for future use. The survey was designed as a caregiver proxy instrument and was completed directly by the patient where able; outcomes are therefore described as respondent-reported, with proxy and direct responses distinguished explicitly. Results are reported as n (%). Recruitment is ongoing toward a planned enrollment of 30, and these are preliminary findings. Results Of 23 patients identified as eligible, 18 (78.3%) were offered the pathway. Among those offered, 14 (77.8%) completed collection, and four (22.2%) declined; zero (0%) attempted collection without completing it. Uptake was 14 of 23 (60.9%) among those identified as eligible. All 14 specimens (100%) returned negative high-risk HPV results. Complete survey data were available for 13 of the 14 completed collections. Among these 13 encounters, tolerance was rated very good in 11 (84.6%) and good in two (15.4%), with zero (0%) rated fair, poor, or very poor; no distress was observed in 12 (92.3%) and mild distress in one (7.7%), with zero (0%) moderate or severe. All 13 encounters with available assistance data (100%) required hands-on assistance, provided by the nurse in nine (69.2%) and by a caregiver in four (30.8%); zero (0%) were completed unaided or with verbal coaching alone, and zero (0%) were unable to be completed despite assistance. All 13 respondents (100%) judged the level of assistance appropriate, rated the process acceptable or very acceptable, and would support offering it again. Conclusions A nurse-assisted self-collected HPV screening model was well tolerated and highly acceptable to respondents in an academic primary care clinic for adults with IDD. Every encounter with available assistance data required hands-on assistance, indicating that nursing support is integral to the model rather than incidental. Clinic efficiency, physician time, and scalability were not measured and remain hypotheses for future evaluation. Recruitment continues.