Health and Quality of Life

The general health of adults with CP is self-reported as good or satisfactory to excellent (59,60), and this can be comparable to that of the community at large (34). In a population-based study of adults with CP in a mid-sized





Pain Fatigue

Routine exercise Monitor and query routinely Work simplification Ergonomic evaluations Energy conservation

Exercise prescription

Query/evaluate sleep; manage as needed Evaluate for pain etiology and treat Modify equipment or workplace Evaluate mental health and manage Progress to pain management program

Musculoskeletal Contractures Hip pathology Knee pathology Foot or ankle pain Back pain

Monitor and query routinely Joint protection strategies Routine exercise

Biomechanic and ergonomic assessments

Focal musculoskeletal evaluation

Tone management

Modify equipment, workplace,

biomechanics of function Therapy prescription Adjust orthoses and wheelchair

Bone health Osteoporosis Fractures

Routine exercise, especially weight-bearing Calcium/vitamin D supplement Fracture and fall prevention; education

DXA evaluation

Consider treatment when multiple

fractures Exercise when appropriate

Neurologic Spasticity Seizures Spinal stenosis Nerve entrapments

Routine monitoring

Adjust medications with reported change Query for changes—high index of suspicion for pathology

Tone management—medications, botulinum

toxin injections, intrathecal baclofen Seizure management Radiological evaluation Electrodiagnosis

Surgical referral when appropriate

Genito/urinary conditions Incontinence UTIs

Monitor and query routinely Routine gynecologic follow-up for women and follow-up for men

Urodynamic evaluation


Medications and CIC when needed

Urology referral as appropriate

Cardiovascular health

Monitor blood pressure and typical serum

panels Query for risk factors

Treat cardiovascular symptoms and events


Healthy nutrition and weight management Measurement of body fat—consider waist

circumference, DXA, or BIA Monitor for metabolic syndrome symptoms/signs

Manage weight; promote exercise

Respiratory conditions Infection Sleep apnea

Routine monitoring Immunization Query sleep hygiene

Scoliosis evaluation

Sleep study and management

Specialty referral as needed




Obstruction Oral motor problems

Monitor and query routinely—recognition

of severity Nutritional management

Dental monitoring, preventive care

Adjustment to bowel program regimen Specialty referral when appropriate

Dental treatment

Drooling management, including botulinum toxin injections and possible ENT referral

Deconditioning Falls

Query about changes in function Routine exercise Education and prevention

Therapy prescription—focus on strength

and aerobics Reconsideration of equipment

Mental health

Routine monitoring, especially for depressive or

anxiety symptoms Query support, living arrangements

Specialty referral as appropriate

Referral for psychological and social support

Use of community resources

Sexual functioning

Fertility/reproduction Interference spasticity or pain

Emotional/body image

Engage in discussion re: sexuality Provide education about sexuality and

function—appropriate modality for

cognition and function Assist with environmental modification

for routine assessments as able Ensure pregnancy high-risk needs are met

Following pregnancy, support may be needed in the home

Health maintenance

Monitoring—see Table 21.9

Abbreviations: BIA, bioelectric impedance analysis; CIC, clean intermittent catheterization; DXA, dual energy x-ray absorptiometry; ENT, Otolaryngologist; GERD, gastroesophageal reflux disease; UTI, urinary tract infection.

U.S. metropolitan area, persons with CP were generally healthy (based on clinical information and self-report), but noted worries and concerns about their health status and future (61). Self-perceived health ratings and life satisfaction may be related to the presence of pain or functional changes over time, but not to the severity of impairment (62-64). A cross-sectional study of youth and young adults with CP in Canada using standardized measures noted youth were somewhat more positive about their health than young adults, although QOL scores were similar. Severity of CP was a strong predictor of health and QOL. Similarities between the groups were notable suggesting self-reported health and QOL outcomes may remain relatively stable across the transition to adulthood (65). HRQOL also remains fairly stable over time for people with CP. As individuals with CP grow and mature, many changes take place in their psychosocial development, which accordingly changes their expectations and those of their caregivers, peers, and professionals. The functional effect of CP seems particularly predictive of physical HRQOL, whereas the associated ID may affect their HRQOL in social functioning (2).

Health outcomes are also evaluated by the use of medical services. Despite reports of good health, a Canadian publication notes adults with CP visited outpatient physicians 1.9 times more than age-matched peers. Annual hospitalization admission rates were 10.6 times higher for adults with CP compared to their peers (66). The presence of other medical conditions is associated with increased odds of hospital or emergency department (ED) use (67). Analysis of the Canadian Institute for Health Information notes epilepsy and pneumonia are the top two reasons for hospital admissions for youth and young adults, and for young adults only, mental illness is the third most common admission diagnosis (68). Additional adult diagnoses included lower gastrointestinal (GI) problems or constipation, malnutrition or dehydration, upper GI problems, and two unique problems seen in the adult group: fractures and urinary tract infections (UTIs). These represent conditions for surveillance in an adult population of people with CP.

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