Ascertaining Health‐Related Information on Adults With Intellectual Disabilities: Development and Field Testing of the Rochester Health Status Survey

Abstract

There is a growing need for researchers and service providers to ascertain and track health status and health care utilization among adults with intellectual disabilities as they pass through the lifespan. This paper reports the development and field testing of the Rochester Health Status Survey (RHSS), a survey instrument that identifies incidence, lifetime prevalence, and point prevalence of diseases common in adults, as well as functional abilities and medication usage. The instrument also provides information about health system access and utilization. The survey is designed to be completed from chart review. An initial version of the survey was developed in 1998, revised in 2003, and then validated on a cohort of adults ages 21 to 73 years living in supervised community residences in the U.S. The RHSS includes 51 questions and requires about 45 min to complete. In the present study, data were collected on each subject by 3 different respondents (a service coordinator, a nurse, and when available, a family member). Their responses were compared item by item with the responses of the second author, a developmental disabilities geriatrician, who also completed the survey on each subject. Correlations and Kappa statistics confirmed that the highest agreement scores occurred between nurses and the geriatrician.

Training Parents of Youth with Autism Spectrum Disorder to Advocate for Adult Disability Services: Results from a Pilot Randomized Controlled Trial

“…We also collected additional information about the youth with ASD, including his/her age, sex, and when he/she was planning on leaving high school. Parents reported on their son or daughter’s autism symptoms using the Social Responsiveness Scale-2 (Constantino & Gruber, 2012); co-occurring psychiatric diagnoses using the Rochester Health Interview (Davidson et al, 2008); and adaptive behavior using the adaptive behavior composite of the Vineland Scales of Adaptive Behavior-II (Sparrow, Cicchetti, & Balla, 2005). An abbreviated IQ score was gathered from youth using the Stanford-Binet-5 Scales of Intelligence (Roid, 2003).…”

Frequency and Correlates of Service Access Among Youth with Autism Transitioning to Adulthood

“…Current comorbid psychiatric diagnoses (1 = youth has a comorbid psychiatric diagnosis , 0 = youth does not have a comorbid psychiatric diagnosis) were determined using the psychiatric disorder section of the Rochester Health Status Survey (Davidson et al 2008), a medical survey designed for individuals with disabilities. Parents were given a checklist of 12 possible psychiatric diagnoses (schizophrenia, other psychosis, bipolar disorder, depression, anxiety disorder, obsessive-compulsive disorder, post-traumatic stress disorder, personality disorder, alcohol/substance abuse, eating disorder, self-injury, other psychiatric disorder), and asked to indicate if their son or daughter currently has this condition, as diagnosed by a medical provider.…”

Life course health and healthcare utilization among adults with spina bifida

“…The Rochester Health Status Survey‐IV (RHSS‐IV) was used to collect data from medical charts. The RHSS‐IV tool and instruction manual are available online (https://www.urmc.rochester.edu/medialibraries/urmcmedia/childrens-hospital/developmental-disabilities/padd/documents/rhssivmanualfinal12-30-2008_002.pdf) or by contacting the authors of this paper.…”