scholarly journals Well-Being of Ambulatory Adults With Cerebral Palsy: Education, Employment, and Physical Function of a Cohort Who Received Specialized Pediatric Care

2021 ◽  
Vol 12 ◽  
Author(s):  
M. Wade Shrader ◽  
Chris Church ◽  
Nancy Lennon ◽  
Thomas Shields ◽  
Jose J. Salazar-Torres ◽  
...  

Introduction: The transition from pediatric health care and school systems presents enormous challenges for young adults with cerebral palsy (CP). The lack of strong societal support during this seminal life event is well-documented and leads many adults with CP to struggle with independence, higher education, and employment. Despite the relatively high prevalence of CP, information about the experiences and function of adults with CP in our society continues to be limited. The purpose of this project was to describe well-being by assessing education, employment, physical function, walking activity, and utilization of health care in an ambulatory adult cohort with CP who received specialized pediatric care at our center.Method: In this Institutional Review Board-approved prospective study, we invited former patients from our tertiary care pediatric CP center to complete a set of patient-reported outcomes including (1) the Patient-Reported Outcomes Measurement Information System domains of physical function and pain interference, (2) the Satisfaction with Life Scale, and a project-specific demographic questionnaire about education, employment, income, independence, pain, and health care utilization. Participants also wore a pedometer for 8 days to monitor community walking activity. Chi-squared pairwise or t-tests were used as appropriate to compare survey responses and walking activity data between three groups: participants who self-reported, those who reported by proxy, and published normative data from age-matched typically developing adult (TDA) samples.Results: One hundred twenty-six adults with CP consented to participate; 85 self-reported [age 29.7 ± 4.3 years; Gross Motor Function Classification System: I (28%), II (47%), and III, (25%)] and 41 reported by proxy [age 29.7 ± 4.1 years; Gross Motor Function Classification System: I (10%), II (68%), and III (22%)]. For the group who self-reported, high school graduation rate (99%) was similar to TDA (92%; p = 0.0173) but bachelor's degree achievement rate (55%) was higher than TDA (37%; p < 0.001). Despite more advanced education, the unemployment rate in this group was higher than national levels at 33% and was associated with high utilization of Social Security Disability Insurance (33%). Within the self-reporting group, 13% required a caregiver. For the group who reported by proxy, educational levels (73% high school graduates, 0 bachelor's degree) were lower than the general population (p < 0.001) and unemployment was higher than the national level, at 64%. Unemployment in this group was associated with high utilization of Social Security Disability Insurance (85%). Within the proxy-reporting group, 71% required a caregiver. The full cohort demonstrated lower levels of physical function according to the Patient-Reported Outcomes Measurement Information System and less community walking activity compared with TDA references (p < 0.001). This cohort of adults with CP reported significantly higher frequency of chronic pain (48 vs. 12% for TDA; p < 0.001), but less pain interference with daily activities than TDA based on Patient-Reported Outcomes Measurement Information System results (p < 0.001). This cohort reported good to excellent overall health (93%) and high utilization of primary care (98%), but limited utilization of specialty care, specifically orthopedic care (21%) and physical therapy (15%).Discussion: This cohort of adults with CP had similar levels of education as the general population, but had relatively high rates of unemployment, caretaker need, and Social Security Disability Insurance utilization. Although chronic pain was frequent, the impact of pain on work and independent living did not exceed reports from a typically developing reference. Better targeted societal resources for adults with physical disabilities are urgently needed to allow equitable access to employment, promote opportunities for independence, and enable full participation in community life.

2021 ◽  
Author(s):  
Yueshi Huang ◽  
Xiaoju Zhang ◽  
Yang Yang ◽  
Tingting Cai ◽  
Wen Zhang ◽  
...  

Abstract Background: The Patient-Reported Outcomes Measurement Information System (PROMIS) has been proven to be an effective and efficient measurement tool and has entered its global promotion phase. Our research team was authorized by the PROMIS Health Organization to translate five adult Patient-Reported Outcomes Measurement Information System (PROMIS) physical function short forms (4a, 6b, 8b, 8c, and 8c 7-Day) to ensure the conceptual and semantical equivalence to the source and pretest them in a Chinese population for cultural adaptation.Methods: The translation was conducted following the Functional Assessment of Chronic Illness Therapy (FACIT) methodology, which mainly includes forward translation, reconciliation, back-translation, expert reviews, cognitive testing, and linguistic validation, etc. And cognitive interview was used to pretest the translated items in Chinese patients with cancer and a healthy population.Results: The translation process was relatively smooth, except for some translated versions that slightly altered some word choices or sentence structures. Subsequent pre-testing of the Simplified Chinese short forms showed that clarifying or laying emphasis on the time frame in the instructions was needful, and two sets of response categories and one item stem needed some slight revisions due to cultural or language discrepancies.Conclusion: The translation and linguistic validation of five adult PROMIS physical function short forms into Simplified Chinese have been completed, and field testing, calibration, and psychometric testing are pending.


Sign in / Sign up

Export Citation Format

Share Document