1.
Care of Adults With Intellectual and Developmental Disabilities: Cerebral Palsy.
Jones, KB, Wilson, B, Weedon, D, Bilder, D
FP essentials. 2015;:26-30
Abstract
Cerebral palsy (CP) is a group of disorders that primarily affect motor function. This developmental disability is becoming more common in adults as life expectancy increases for individuals with CP. Many physical, medical, mental, and behavioral health conditions are associated with CP, and assistance should be provided to patients with CP to optimize function, when available. These comorbidities include intellectual disabilities, seizures, muscle contractures, abnormal gait, osteoporosis, communication disorders, malnutrition, sleep disorders, and mental health disorders, such as depression and anxiety. The physician should be familiar with screening for and assisting patients with these issues. Optimizing quality of life requires individualized care plans that may include physical therapy, muscle relaxants, surgery, and nutritional support. Other issues to be addressed include methods to facilitate employment; sexual concerns; and support through local and national organizations for patients, families, and caregivers.
2.
ADCS Prevention Instrument Project: the Mail-In Cognitive Function Screening Instrument (MCFSI).
Walsh, SP, Raman, R, Jones, KB, Aisen, PS, ,
Alzheimer disease and associated disorders. 2006;(4 Suppl 3):S170-8
Abstract
In future research on the prevention of Alzheimer Disease (AD), a large simple prevention trial might test a safe intervention (eg, vitamins) in a very large population (eg, 10,000 subjects), powered to detect a modest treatment effect size. In a large, simple design, regular assessments must be very low cost, for example, handled by mail. The Mail-In Cognitive Function Screening Instrument (MCFSI) was developed for the Alzheimer's Disease Cooperative Study Prevention Instrument Project to evaluate whether a brief mail-in screening tool can be used as a specific and sensitive trigger for a diagnostic evaluation in the course of a prevention trial. The MCFSI consists of 2 similar sets of 14 questions mailed separately to the subject and the study partner, who are asked to complete them independently. The questions are derived from a standard clinical assessment of dementia; they ask about decline in function over the last year. We are currently evaluating the utility of the instrument in 640 subjects over the course of the "simulated" AD prevention trial. Analysis of baseline data showed significant differences in mean MCFSI scores between sex and ethnic groups (for subjects), age groups (for partners), and Clinical Dementia Rating global score groups (both subject and partner). In this nondemented population, both subject's and partner's MCFSI responses were related to cognitive performance. There was no significant association between MCFSI score for either subjects or partners and apolipoprotein E genotype. The MCFSI captures information related to cognitive and functional status in nondemented elderly individuals; the Alzheimer's Disease Cooperative Study Prevention Instrument Project will determine whether this brief, mail-in questionnaire is useful as a trigger for diagnostic evaluation in an AD primary prevention trial.