Unmet needs and health care utilization in young adults with cerebral palsy

Purpose. To gain insight into the unmet needs and utilization of health care of young adults with cerebral palsy (CP) and to explore relations between unmet needs, health care utilization and subject characteristics.

Method. A cross-sectional study was performed in 29 young adults with CP without severe learning disabilities (IQ > 70). Subject characteristics such as age, gender, limb distribution, level of gross motor functioning, level of education and perceived participation and autonomy were measured. Outcome measures were the Southampton Needs Assessment Questionnaire, Impact on Participation and Autonomy and a questionnaire on health care utilization.

Results. Young adults with CP reported unmet needs mostly on information (79%), mobility (66%) and health care (66%). About half of the participants visited a rehabilitation physician (52%) or a physical therapist (55%) in the past year. Participants with lower levels of gross motor functioning were found to have more unmet needs and visited various health care professionals more often than young adults with higher levels of gross motor functioning. However, participants with higher levels of gross motor functioning still reported several unmet needs.

Conclusions. Although young adults with CP frequently receive treatment from health care professionals, they indicate unmet needs with respect to several areas such as information on diagnosis, functional mobility and formal health care. In the treatment of young adults with CP, attention should be paid to these aspects.     

Daily care activities and hip pain in non-ambulatory children and young adults with cerebral palsy

Hip movement pain was identified in 13 (32.5%) of 40 children and young adults with cerebral palsy who were in residential care. All of the participants were non-ambulatory (Level IV and V of the GMFCS), and their ages ranged from 8 to 26 years (median 16.5 years). Ten of the 13 participants had unilateral hip dislocation and three had bilateral dislocations. Degenerative hip changes were identified on radiographs of the painful dislocated hips. The occurrence of pain during a daily episode of washing, dressing, and transfer was recorded using non-verbal indicators. Washing of the lower body elicited significantly more pain responses than dressing (p=0.008) and transfer (p<0.001). None of the participants had daily pain during all of the care activities. Pain was present in 1/3 of the patients and was intermittent in nature, indicating that conservative management can be considered for persons with cerebral palsy at Levels IV and V of the GMFCS who have established hip dislocations and this type of pain. This management could include medication, attention to seating and positioning, and careful handling during daily care activities.     

Determinants of functioning of adolescents and young adults with cerebral palsy

Purpose. To describe the level of functioning of adolescents and young adults with cerebral palsy (CP) and study determinants of their level of functioning.

Method. In the CP Transition study, adolescents and young adults aged 16 - 20 years, diagnosed with CP without severe learning disabilities (n = 103) participated. In this group we assessed subject characteristics, i.e., age, type of CP, gross motor function (GMFCS), level of education as well as outcome measures on functioning in daily activities and social participation (Life Habits questionnaire, Vineland Adaptive Behavior Scale, Functional Independence Measure). Multivariate regression analyses were performed.

Results. About 20 - 30% of the participants encountered restrictions in daily activities (mobility, self-care, nutrition) and social participation (taking responsibility, community living, leisure activities and employment). The GMFCS level, level of education, and age proved to be important determinants of functioning in daily activities and social participation, explaining 70% and 66% of the variance in outcome respectively.

Conclusion. A significant number of adolescents and young adults with CP without severe learning disabilities are restricted in daily activities and social participation. These problems are mainly attributable to restricted gross motor functioning, a low level of education and younger age.     

Determinants of functioning of adolescents and young adults with cerebral palsy

Purpose. To describe the level of functioning of adolescents and young adults with cerebral palsy (CP) and study determinants of their level of functioning.

Method. In the CP Transition study, adolescents and young adults aged 16 – 20 years, diagnosed with CP without severe learning disabilities (n = 103) participated. In this group we assessed subject characteristics, i.e., age, type of CP, gross motor function (GMFCS), level of education as well as outcome measures on functioning in daily activities and social participation (Life Habits questionnaire, Vineland Adaptive Behavior Scale, Functional Independence Measure). Multivariate regression analyses were performed.

Results. About 20 – 30% of the participants encountered restrictions in daily activities (mobility, self-care, nutrition) and social participation (taking responsibility, community living, leisure activities and employment). The GMFCS level, level of education, and age proved to be important determinants of functioning in daily activities and social participation, explaining 70% and 66% of the variance in outcome respectively.

Conclusion. A significant number of adolescents and young adults with CP without severe learning disabilities are restricted in daily activities and social participation. These problems are mainly attributable to restricted gross motor functioning, a low level of education and younger age.     

Reasons for hospital admissions among youth and young adults with cerebral palsy

Young NL, McCormick AM, Gilbert T, Ayling-Campos A, Burke T, Fehlings D, Wedge J. Reasons for hospital admissions among youth and young adults with cerebral palsy.

Objective

To identify the most common reasons for acute care hospital admissions among youth (age range, 13–17.9y) and young adults (age range, 23–32.9y) with cerebral palsy (CP).

Design

We completed a secondary analysis of data from the Canadian Institute for Health Information (CIHI) to determine the most frequently observed reasons for admissions and the associated lengths of stay (LOS).

Setting

Participants were identified from 6 children's treatment centers in Ontario, Canada.

Participants

Health records data from youth with CP (n=587) and young adults with CP (n=477) contributed to this study.

Interventions

Not applicable.

Main Outcome Measures

The most common reasons for hospital admission, relative frequencies of admissions for each reason, and mean LOS were reported.

Results

The analysis of CIHI records identified epilepsy and pneumonia as the top 2 reasons for admissions in both age groups. Both age groups were commonly admitted because of infections other than pneumonia and urinary tract infections (UTIs), gastrointestinal (GI) problems such as malabsorption, and mental illness. The reasons that were unique to youth included orthopedic and joint-related issues, other respiratory problems, and scoliosis. In young adults, mental illness was the third most common reason for admission, followed by lower GI or constipation problems, malnutrition or dehydration, upper GI problems, fractures, and UTIs.

Conclusions

This article provides important clinical information that can be used in the training of physicians and health care providers, and to guide future planning of ambulatory care services to support the clinical management of persons with CP over their lifespan.     

An exploratory study investigating the multidimensional factors impacting the health and well-being of young adults with cerebral palsy

Background: For young adults with cerebral palsy, changes in psychological and social development, in conjunction with the progression of musculoskeletal deformities and the onset of secondary conditions, make the transition to adulthood a difficult developmental phase. Preliminary evidence shows that many of the physical impairments reported in adults with cerebral palsy begin during late adolescence; however, there is little information about prevalence of impairments and the combined role impairments, psychological and social factors have on the health and well-being of young adults with cerebral palsy.

Methods: A cross-sectional, multidimensional survey approach was used to examine the ambulatory decline, pain, pain interference, depression, fatigue, locus of control, emotional support, overall health status and satisfaction with life of young adults with cerebral palsy, age 18–30 years.

Results: Ninety-seven surveys (57 self-report and 40 proxy report) were completed across all gross motor function classification system levels. No significant differences were found amongst functional levels for pain, pain interference, fatigue or depression. Only pain interference significantly contributed to the variance in health status, while emotional support significantly contributed to the variance in satisfaction with life.

Conclusions: The large percentage of young adults in this study reporting pain, fatigue and depression indicates that the onset of these impairments may begin at an earlier age. This study found that emotional support from family facilitates improved health status and enhanced satisfaction with life in young adults with cerebral palsy. Similar to physical impairments, social and psychological factors also contribute to the health and well-being of young adults with cerebral palsy, a holistic approach to care that includes preventative strategies to address both mental and physical health outcomes should begin well in advance to their transition into young adulthood in order to mitigate the impact these factors have on health and well-being during this critical developmental time.

• Implications for Rehabilitation

• Pain, fatigue and depression were reported for all levels of GMFCS and should be assessed and addressed with appropriate treatment early in order to determine whether there are surgical, pharmacological, rehabilitative or counseling services that could be implemented at a younger age to improve outcomes in young adulthood.

• For young adults with CP, emotional support plays a significant role in the health status and satisfaction with life and strategies to enhancing support beyond the family could enhance health status and satisfaction with life.

     

Unmet health care needs. Comparison of rural and urban senior center attendees

Rural-dwelling older adults are in poorer health and have less access to health care resources than urban older adults. However, little is known about specific unmet needs which exist for urban and rural populations. This study compared self-reported health status, use of services, and unmet health care needs of 106 elderly individuals residing in rural and urban settings to determine if these variables differed based on geographic location. Data were gathered on the three dependent measures using the Elderly Health Care Needs Assessment Questionnaire. Findings revealed rural older adults were not in poorer self-reported health (chi 2 = 1.85, p = .60). However, a t test showed rural subjects were significantly poorer in objective health as measured by the number of reported symptoms (t = 224, p = .02). Despite having a greater number of specific health complaints, these rural elderly individuals did not use significantly more services (t = 1.16, p = .24) or report more unmet needs (chi 2 = 3.67, p = .055), thereby reinforcing traditional views of rural older adults being in poorer health but also more self-reliant in matters related to health care. The results of this study provide information which will improve nursing practice in rural and urban settings and provide direction for further research.     

Relationship between quality of life and functional status of young adults and adults with cerebral palsy

Purpose.?The aim of this study was investigate the relation between health related quality of life (HRQoL) and functional status in young adult or adult cerebral palsied individuals.

Methods.?The study included 45 cerebral palsied subjects who were divided into two groups as young adults (n?=?21, group 1) and adults (n?=?24, group 2), over the age 15 years. Gross Motor Function Classification System (GMFCS), Functional Independence Measurement (FIM), Physical Mobility Scale (PMS), Nottingham Health Profile (NHP), Visual Analogue Scale (VAS) were used as outcome measures.

Results.?In group 1, GMFCS and PMS scores were significantly correlated with total the total score of FIM (p?<?0.05). Although total FIM, PMS, LS and GMFCS scores were not correlated with the total NHP score (p?>?0.05), pain subscale of NHP was significantly correlated with self care and mobility subscales of FIM (p?<?0.05). Also, self care, mobility, locomotion subscales and total score of FIM were highly correlated with the physical activity subscale of NHP (p?<?0.05). In group 2, our findings were also similar to those of young adults when the relations between total NHP score and total FIM, PMS, LS and GMFCS were investigated (p?>?0.05) and also some subscales of FIM and NHP presented high correlations in between. In addition, there were significant differences between the groups in GMFCS, LS and locomotion and self care subscales of FIM (p?<?0.05).

Conclusion.?Although HRQoL in young cerebral palsied individuals seems to be more effected by parameters related to physical condition, in cerebral palsied adults psychological and emotional aspects may be more important indicators related to HRQoL. For that reasons, more population specific measures have to be developed for in-depth analysis of these factors.     

Pain in adults with cerebral palsy]

INTRODUCTION: Pain is the main problem in patients with cerebral palsy. To improve the quality of life of people with cerebral palsy, a good knowledge of the clinical syndrome is necessary. METHOD: We reviewed the published data of the APIB study. We analysed data about pain, especially its correlation with age, motor handicap, and depressive syndrome. We also reviewed the literature to survey the pain syndrome in such a situation. RESULTS: A total of 562 patients responded to the APIB survey (mean age 36+/-14 years). Of these, 75% complained about physical pain. Pain was significantly associated with age, motor handicap, depressive syndrome, and sleep disorders. DISCUSSION: A study of the literature confirms our results on pain in cerebral palsy from the APIB survey. The main localisations of pain are the spine, and scapular and pelvic girdles. Pain syndromes of the upper and lower limbs are also frequent, with much due to overuse. Some rare causes include heterotopic ossifications. CONCLUSION: A good knowledge of the characteristics of the pain syndromes in people with cerebral palsy is important because of the great prevalence of this problem in this population. Better knowledge will help prevent the pain and improve quality of life.     

Targeting the health care needs of young offenders

Youth offending teams offer a multiagency, holistic approach to the complex difficulties presented by young people who commit crime. This article describes the work of such teams and, in particular, the role of health practitioners in them. It also examines the structural support and organisation necessary to develop effective working practices in such a diverse team and considers other service developments that would be useful for youth offenders with mental health problems.     

Locomotion skills in adults with cerebral palsy

OBJECTIVES: To investigate self-reported locomotion skills in persons with cerebral palsy (CP) and to investigate variables potentially associated with deterioration of walking skills. DESIGN: Cross-sectional retrospective survey. SETTING AND SUBJECTS: A multidimensional mailed questionnaire was sent to 766 persons with CP, 18 years or over, without intellectual disabilities, living in Norway. MAIN OUTCOME MEASURES: The questionnaire consisted of demographic and diagnostic items, items on locomotion skills, and physical function (SF-36). RESULTS: In total 406 persons, 51% males and 49% females from 18 to 72 years (mean 34 years, SD 11 years) with all categories of CP responded. Median age for reported walking debut was 3 years, with a range from 1 to 14 years. In total 216 respondents (53%) walked without support, 104 persons (25%) walked with support, 39 persons (10%) had lost their walking skills, and 47 (12%) had never been able to walk. Mean level of physical function (SF-36) was 53 out of 100. There were 97 persons (27%) who reported improvement of walking skills, mainly before 25 years, 102 (28%) reported no change, and 160 (44%) reported deterioration, mainly before 35 years of age. Deterioration was significantly associated with older age, delayed walking debut and severe neurological impairment. Self-reported causes of deterioration were pain, fatigue and lack of adapted physical activity. CONCLUSION: Deterioration of locomotion skills is a significant problem in persons with CP from an early age, documenting the need for life-long follow-up. The predictors above should be investigated in further clinical studies, searching for potential causal pathways.     

Health issues in young adults with cerebral palsy: towards a life-span perspective.

OBJECTIVE: To obtain better insight into the health issues of young adults with cerebral palsy. DESIGN: Cross-sectional. SUBJECTS: Two data sources were used: 54 adults with cerebral palsy (age range 25-36 years) and 48 physicians (members of the Netherlands Society of Physical and Rehabilitation Medicine). METHODS: Adults with cerebral palsy participated in a physical examination and a semi-structured interview assessing several health issues and utilization of healthcare. Rehabilitation physicians completed a questionnaire on impairments they recognized as being related to cerebral palsy. RESULTS: In the patient sample, pain (59%) and joint deformities (19-57%) were observed most frequently. Evidence of a decrease in the utilization of healthcare services at adult age emerged. Lower gross motor function and cognitive level appeared to be determinants of motor and speech impairments and of the utilization of 3 allied healthcare services. Rehabilitation physicians reported pain (88%), joint deformities (86%) and fatigue (76%) as being cerebral palsy-related health problems in adults. CONCLUSION: Based on the high prevalence of pain and joint deformities and the decrease in the utilization of healthcare services, systematic follow-up in adults with cerebral palsy seems warranted. Cerebral palsy needs to be considered as a life-long condition, requiring a life-span perspective in order to better organize optimal care.     

Using the manual ability classification system in young adults with cerebral palsy and normal intelligence

Purpose.?The study aimed to establish whether the manual ability classification system (MACS), a valid classification system for manual ability in children with cerebral palsy (CP), is applicable in young adults with CP and normal intelligence.

Subjects.?The participants (n?=?83) were young adults with CP and normal intelligence and had a mean age of 19.9 years.

Method.?In this study, inter observer reliability of the MACS was determined. We investigated relationships between the MACS level and patient characteristics (such as the gross motor function classification system (GMFCS) level, limb distribution of the spastic paresis and educational level) and with functional activities of the upper extremity (assessed with the Melbourne assessment, the Abilhand questionnaire and the domain self-care of the functional independence measure (FIM)). Furthermore, with a linear regression analysis it was determined whether the MACS is a significant determinant of activity limitations and participation restrictions.

Results.?The reliability was good (intraclass correlation coefficient 0.83). The Spearman correlation coefficients with GMFCS level, limb distribution of the spastic paresis and educational level were 0.53, 0.46, and 0.26, respectively. MACS level correlated moderately with outcome measures of functional activities (correlations ranging from??0.38 to??0.55). MACS level is, in addition to the GMFCS level, an important determinant for limitations in activities and restrictions in participation.

Conclusion.?We conclude that the MACS is a feasible method to classify manual ability in young adults with CP and normal intelligence with a good manual ability.     

Case management for young children with special health care needs.

Case management for young children and their families with special health care needs is an organized system of health care. Fifty-eight families were surveyed to assess their experience with case management or determine their need for case management. Suggestions are provided for nurses to participate actively in this role.     

Creating Healthy Futures: an innovative nurse-managed transition clinic for adolescents and young adults with special health care needs

The Creating Healthy Futures (CHF) clinic is an innovative, nurse-managed service model that provides comprehensive transition services to youth and young adults with special health care needs. Unlike other transition service models reported in the literature that are medically based, comprehensive transition services were coordinated by a family nurse practitioner who worked in close collaboration with an interagency team of pediatric and adult service providers. The Creating Healthy Futures (CHF) service model was originally developed for use in educational settings but was adapted for use in health care settings. The components of the service model are described in detail as a model for replication in other health care settings.