Volume 90, Issue 11 , Pages 1891-1897, November 2009
Experienced Problems of Young Adults With Cerebral Palsy: Targets for Rehabilitation Care
Article Outline
Abstract
Nieuwenhuijsen C, Donkervoort M, Nieuwstraten W, Stam HJ, Roebroeck ME; and the Transition Research Group South West Netherlands. Experienced problems of young adults with cerebral palsy: targets for rehabilitation care.
Objective
To determine the problems experienced by young adults with cerebral palsy (CP) and the relationship between those problems and personal and CP-related characteristics.
Design
Cross-sectional study.
Setting
Rehabilitation centers in the southwest Netherlands.
Participants
Young adults (N=87; aged 18–22y) with CP and normal intelligence (roughly corresponding to an intelligence quotient >70, excluding participants who attended schools for those with learning disabilities).
Interventions
Not applicable.
Main Outcome Measures
We used the Canadian Occupational Performance Measure in a semistructured interview to assess participants for experienced problems. We further categorized experienced problems according to the domains of the International Classification of Functioning, Disability and Health and assessed the relationship between those problems and personal and CP-related characteristics (eg, age, sex, level of gross motor functioning, manual ability, level of education) using appropriate correlation coefficients.
Results
Approximately 70% of participants experienced problems in daily life, addressing the areas of self-care (59%), productivity (52%), and leisure activities (37%). More specifically, problems were most prevalent in recreation and leisure (30%), preparing meals (29%), housework (14%), and dressing (14%). Problems in functional mobility, paid or unpaid work, and socialization were considered as most important (represented by the highest mean importance score). Mobility problems were associated with lower levels of gross motor functioning (Spearman ρ=.39), and problems with self-care were associated with lower levels of manual ability (Spearman ρ=.40).
Conclusions
Although frequently addressed during pediatric rehabilitation care, problems with mobility and self-care still prevail in young adults with CP. In addition, during the transition into adulthood, young adults with CP may experience problems regarding domestic life and work, which they consider important.
Key Words: Activities of daily living, Cerebral palsy, Health transition, Rehabilitation
List of Abbreviations: COPM, Canadian Occupational Performance Measure, CP, cerebral palsy, GMFCS, Gross Motor Functioning Classification System, ICF, International Classification of Functioning, Disability and Health, MACS, Manual Ability Classification System
CEREBRAL PALSY IS ONE of the most frequently occurring medical conditions of childhood.1, 2, 3 In the Netherlands, 1.51 per 1000 inhabitants have CP, and epidemiologic data suggest that this prevalence has not decreased over time.4 Children with CP account for approximately 50% of pediatric rehabilitation patients in the Netherlands, and this population has received much attention in pediatric rehabilitation medicine regarding the provision of health care services.5 However, as they enter adulthood, attention for young adults with CP seriously declines, despite the physical, social, and emotional changes that may occur during this transition.6
There has been a recent increased awareness about the need for lifelong care of persons with CP.7, 8 It is recognized that young adults with childhood disability might encounter difficulties during their transition into adulthood that require treatment and care.9, 10, 11 The lack of coordinated services for these young adults with CP has prompted several researchers to propose a multidisciplinary approach to care.6, 12, 13, 14, 15 In the United Kingdom, specialized young adult teams were designed to improve the transition from child to adult care; evaluations of these interventions show that they lead to improved participation in society for young adults with CP.6, 7 Young adult teams are also available in Sweden,16 and the first Dutch young adult team started in 2007.17, 18
Although the number of lifespan care initiatives is growing, we have limited systematic knowledge of specific problems encountered by young adults with CP during the transition to adulthood. In a previous study19 with young adults with CP, we demonstrated several unmet needs, primarily involving information, mobility, and health services. Although young adults with low levels of gross motor functioning reported the most unmet needs, those with higher functioning also reported several unmet needs.19 Donkervoort et al20 reported that 20% to 30% of young adults with CP encountered difficulties in performing daily activities and social participation. They experienced difficulties mainly in mobility, self-care, nutrition, employment, and community life.20, 21 Studies of adults with CP have also shown that limitations in activities of daily life are present in several areas such as self-care and mobility.22, 23, 24
Further knowledge of experienced problems of young adults themselves is of great value in determining relevant topics at which the young adult teams should be aimed. Therefore, the current study aimed to determine the experienced problems of young adults with CP of normal intelligence, using a client-centered perspective.
Methods
Study Sample
This study is part of the CP Transition Study Southwest Netherlands, which was designed to evaluate the course of functioning in adolescents and young adults with CP over time.20, 21 Data described in the current study were collected at the 2-year follow-up, when the young adults were aged 18 to 22 years. Participants were recruited from 8 participating rehabilitation centers and rehabilitation departments in the southwest area of the Netherlands. The inclusion criteria for the original study20, 21 were (1) a diagnosis of CP, (2) age 16 to 20 years, and (3) normal intelligence (excluding participants who attended schools for those with learning disabilities; roughly corresponding to an intelligence quotient >70). Exclusion criteria were (1) secondary medical conditions having lasting effects on motor functioning, and (2) insufficient knowledge of the Dutch language. Participants received verbal and written information about the study and gave verbal and written consent to participate. Ethical approval for the study was provided by the Medical Ethics Committee of Erasmus Medical Center, Rotterdam.
In total, 87 of 103 participants from the original study participated in the 2-year follow-up (dropout rate, 16%). Dropout occurred secondary to loss of interest (n=9), competing time demands (n=5), or relocation to another country (n=2). When we compared baseline characteristics of participants and dropouts (n=16), no significant differences were found in sex, age, gross motor function, manual ability, type of CP, limb distribution, or housing status. Persons who dropped out of the study had a lower educational level (39% vs 27% with low level of education; see below for description of educational levels) compared with participants (P=.02).
Measurements
Three interviewers who were trained in the COPM assessed problems experienced by the participants with the COPM, which is a semistructured interview tool.25 We used the structure of the ICF26 to further organize and link experienced problems. Linking the problems to the ICF may allow standardization and comparability to other studies because of this tool's widespread use. These linking rules have been applied in previous studies to compare measurement instruments27, 28, 29 and for goal-setting in rehabilitation care.30, 31
The interviewer noted personal and CP-related characteristics, including sex, age, limb distribution of the paresis, level of gross motor functioning (GMFCS),32 and manual ability (MACS).33 The GMFCS is a 5-level classification system of gross motor functional abilities and limitations; a higher GMFCS level (level V) corresponds to a lower level of gross motor functioning.32 The MACS is a 5-level classification tool used to evaluate how persons with CP handle objects during daily activities; a higher MACS level (MACS level V) corresponds to a lower level of manual ability.33 Both the GMFCS and MACS were originally developed and validated for children,32, 33 but have demonstrated reliability and validity in young adults.34, 35
We classified participants by 3 different educational levels based on actual and potential educational capacity: low (prevocational practical education or less), medium (prevocational theoretical education and upper secondary vocational education), or high (secondary nonvocational education, higher education and university).20
Canadian Occupational Performance Measure
The COPM24 is a semistructured interview tool that focuses on activities that the participant wants, needs, or is expected to perform. The COPM was developed to assess experienced problems in 3 areas of occupational performance: self-care, productivity, and leisure. Each performance area in turn covers 3 activity domains. Within an activity domain the participant can report several experienced problems. The importance of each problem, as perceived by the participant, is first rated on a 10-point scale, with 1 being not important and 10 being extremely important. Participants then name the 5 activities that are most important to them. The COPM also assesses activity performance and satisfaction with performance, but these areas will not be discussed here. Several studies have shown that the COPM has good validity, moderate test-retest and interrater reliability, and is sensitive to change.36, 37, 38, 39, 40
Types of Problems: International Classification of Functioning, Disability and Health Linking
To further categorize specific types of problems experienced by young adults with CP in a more standardized way, we linked the experienced problems to the ICF. The ICF26 provides a framework for recording and organizing information about health and health-related states in a standardized, common language that facilitates communication between various disciplines and scientific fields.41, 42 The ICF assesses: (1) functioning and disability, and (2) contextual factors. The COPM is an instrument focusing on activities, so contextual factors (part II) were not considered in this study. Part I includes the components body functions (“b”), body structures (“s”), and activities and participation (“d”). In the ICF classification, “b,” “s,” and “d” are followed by numeric codes starting with the chapter number (domain, 1 digit), followed by the second level (2 digits), third level (1 digit), and fourth level (1 digit), which are the categories of the ICF. For example, “hand or arm use” is coded as d440, where “d” indicates the component activities and participation, the first “4” indicates the mobility domain, and “40” indicates the second level category of hand or arm use.
In this study, we linked each problem reported on the COPM to the most precise ICF category by applying the linking rules of Cieza et al.41, 43 Two researchers (C.N., M.D.) determined to which ICF category the experienced problems should be linked. In cases of disagreement, a third researcher (M.E.R.) was consulted. In this article, results of second level linking are presented.
Data Analysis
Results were summarized using descriptive statistics. Associations between experienced problems and personal and CP-related characteristics (eg, age, sex, level of gross motor functioning, manual ability, level of education) were determined with appropriate correlation coefficients: Phi coefficients (Phi) for 2 dichotomous variables, Pearson correlation coefficients (Rp) for associations between dichotomous and continuous variables, and Spearman correlation coefficients (ρ) for associations between dichotomous and ordinal variables. Because of the large number of relationships evaluated, a significance level of .01 or less was used.44 According to this level of significance and available sample size, the power of the study was .90 to detect associations of .40 or greater. All statistics were performed using Statistical Package for the Social Sciences (Windows version 12.0.1).a
Results
Study Sample
Participant characteristics are presented in table 1. The study sample included 87 young adults (51 men, 36 women) with CP and normal intelligence. Their mean age ± SD was 19.9±1.4 years. Approximately half of the participants had hemiplegic CP, 31% had diplegic CP, and 20% had quadriplegic CP. Most participants had a high level of gross motor functioning (ie, they could climb stairs, had no limitations in walking indoors or outdoors) and had a high level of manual ability. Participants were evenly distributed across educational levels, with 40% at the middle educational level (prevocational theoretical education and upper secondary vocational education).
Table 1. Participant Characteristics
| Characteristics | Participants (N=87) |
|---|---|
| Age (y) | 19.9±1.4 |
| Sex (men) | 51(59) |
| Limb distribution | |
| Hemiplegia | 43(49) |
| Diplegia | 27(31) |
| Quadriplegia | 17(20) |
| Type of CP⁎ | |
| Spastic | 82(94) |
| Ataxic | 1(1) |
| Dyskinetic | 1(1) |
| Mixed | 2(2) |
| GMFCS level⁎ | |
| I | 63(72) |
| II | 9(10) |
| III | 5(6) |
| IV | 8(9) |
| V | 1(1) |
| MACS level⁎ | |
| I | 67(77) |
| II | 10(12) |
| III | 4(5) |
| IV | 1(1) |
| V | 1(1) |
| Educational level | |
| Low | 23(27) |
| Middle | 35(40) |
| High | 29(33) |
| Student/employment | |
| Student | 53(61) |
| Paid job | 17(20) |
| Other (eg, day center) | 17(19) |
| Housing status⁎ | |
| Living with parents | 61(70) |
| Living alone or with others | 19(22) |
| Living in an institute | 6(8) |
⁎Missing data for type of CP (n=1), GMFCS (n=1), MACS (n=4) and housing status (n=1). |
Experienced Problems
Participants reported a total of 271 experienced problems, with the number of problems per person ranging from 0 to 15. Approximately 29% of participants reported no experienced problems on the COPM. At least 1 problem was reported by 51 participants (59%) for self-care, 45 participants (52%) for productivity, and 32 participants (37%) for leisure (table 2). Commonly reported problems were cutting nails, cutting food into pieces, and walking long distances.
Table 2. Experienced Problems, Priorities, and Importance Ratings, as Reported on the COPM
| No. of Participants Reporting a Problem | No. 1 Priority⁎ | Mean Importance of Problems (0–10) | Most Often Mentioned Problems | |
|---|---|---|---|---|
| Self-care | 51(59) | |||
| Personal care | 22(25) | 5(8) | 6.7±2.5 | Cutting nails, buttoning shirt, tying shoelaces |
| Functional mobility | 41(47) | 24(39) | 7.6±2.3 | Walking long distances, standing for a long time, walking stairs |
| Community management | 10(12) | 4(6) | 7.8±1.5 | Purchasing groceries/carrying bags with groceries |
| Productivity | 45(52) | |||
| Paid or unpaid work | 22(25) | 15(24) | 8.7±1.3 | Finding a job/other employment, having fun in employment |
| Household management | 29(33) | 5(8) | 7.1±2.1 | Cutting food into pieces, peeling potatoes, cooking |
| Play/school | 11(13) | 3(5) | 7.8±1.6 | Writing |
| Leisure | 32(37) | |||
| Quiet recreation | 5(6) | 0(0) | 6.4±2.0 | Playing the guitar |
| Active recreation | 24(28) | 4(6) | 6.0±2.6 | Playing soccer, ice-skating, horseback riding |
| Socialization | 9(10) | 2(3) | 8.8±1.2 | Contact with unfamiliar persons, going out |
| No problems reported | 25(29) | — | — | — |
⁎Percentages were calculated for persons who reported at least 1 problem (n=62). |
Table 2 also shows the prioritization of experienced problems in the different COPM domains. Young adults with CP identified the following as priority problem areas (proportion of participants reporting at least 1 problem): functional mobility (39%), paid or unpaid work (24%), household management (8%), and personal care (8%). Although not mentioned often as being a number 1 priority, the mean importance rating of problems with socialization was high (8.8±1.2). Other domains with high mean importance ratings were paid or unpaid work (8.7±1.3), community management (7.8±1.5), and play/school (7.8±1.6).
Types of Problems
We linked 98% of experienced problems detected by the COPM to the activity and participation components of the ICF. The remaining 2% (5 problems) were linked to the body functions component. Table 3 shows the ICF categories for which at least 10% of participants reported a problem. Problems were experienced in ICF categories of recreation and leisure (30%), preparing meals (29%), doing housework (14%), and dressing (14%). Other self-care activities, work, and specific mobility problems were also reported as experienced problems.
Table 3. Types of Problems Experienced by More Than 10% of Young Adults With CP, as Classified by the ICF
| Problems | ICF Code | No. of Participants Reporting a Problem |
|---|---|---|
| Recreation and leisure | d920 | 26(30) |
| Sports | ||
| Socializing | ||
| Arts and culture | ||
| Crafts | ||
| Recreation and leisure, unspecified | ||
| Preparing meals | d630 | 25(29) |
| Preparing simple meals | ||
| Preparing meals, unspecified | ||
| Preparing complex meals | ||
| Doing housework | d640 | 12(14) |
| Using household appliances | ||
| Cleaning cooking area and utensils | ||
| Cleaning living area | ||
| Doing housework, other specified | ||
| Doing housework, unspecified | ||
| Washing and drying clothes and garments | ||
| Dressing | d540 | 12(14) |
| Putting on clothes | ||
| Putting on footwear | ||
| Caring for body parts | d520 | 11(13) |
| Caring for fingernails | ||
| Caring for hair | ||
| Caring for skin | ||
| Caring for teeth | ||
| Acquiring, keeping, terminating a job | d845 | 11(13) |
| Seeking employment | ||
| Walking | d450 | 11(13) |
| Walking long distances | ||
| Walking on different surfaces | ||
| Walking around obstacles | ||
| Walking, other specified | ||
| Lifting and carrying objects | d430 | 11(13) |
| Carrying in the hands | ||
| Lifting | ||
| Using transportation | d470 | 11(13) |
| Using private motorized transportation | ||
| Using public motorized transportation | ||
| Using transportation, unspecified | ||
| Driving | d475 | 9(10) |
| Driving motorized vehicles | ||
| Driving human-powered transportation |
Relationships
The presence of a problem in different domains of the COPM was not associated with sex or age (table 4). Participants with lower levels of gross motor functioning (GMFCS level) experienced more problems in functional mobility (Spearman ρ=.39, P<.001) and in socialization (Spearman ρ=.40, P<.001). Persons with lower levels of manual ability (MACS level) experienced more problems in personal care (Spearman ρ=.32, P=.003) and in play/school (Spearman ρ=.29, P=.008). Finally, those with lower levels of education experienced more problems in paid or unpaid work (Spearman ρ=−.30, P=.005).
Table 4. Associations Between Personal and CP-Related Characteristics and Experienced Problems
| COPM Domain | Sex⁎ | Age† | GMFCS Level‡ | MACS Level‡ | Level of Education‡,§ |
|---|---|---|---|---|---|
| Personal care | −.01 | −.24 | .06 | .32∥ | −.12 |
| Functional mobility | .14 | .16 | .38∥ | .17 | .07 |
| Community management | .21 | .05 | .15 | −.05 | −.26 |
| Paid or unpaid work | .05 | −.02 | .10 | .07 | −.30∥ |
| Household activities | .10 | −.14 | .03 | .11 | −.13 |
| Play/school | .03 | −.10 | .12 | .29∥ | −.04 |
| Quiet recreation | −.11 | −.05 | −.15 | .02 | .11 |
| Active recreation | .21 | .06 | −.08 | −.09 | .08 |
| Socialization | .02 | −.06 | .38∥ | .15 | −.17 |
⁎Phi coefficient was calculated for dichotomous variables. |
†Pearson correlation coefficients for continuous variables. |
‡Spearman correlation coefficients for ordinal variables. |
§Level of education was classified as low (prevocational practical education or less), medium (prevocational theoretical education and upper secondary vocational education), or high (secondary nonvocational education, higher education, and university). |
∥P≤.01. |
Discussion
This is the first study that used the client-centered perspective to determine the problems that young adults with CP experience. We showed that young adults with CP with normal intelligence experienced several problems in daily life. Problem areas primarily include mobility, work, self-care, domestic tasks, and leisure. Persons with lower levels of gross motor functioning and lower levels of manual ability appear to be more prone to experiencing problems in daily life.
Mobility
Problems in mobility are reported frequently and are of high importance for young adults with CP. So although much attention is given to problems in mobility in pediatric rehabilitation, it appears that these problems will remain important throughout adulthood. Partly, these problems address walking and wheelchair use, which might be considered to be inherent to lower levels of gross motor functioning in CP. But they also refer to problems in using public transportation or driving a car, which are considered more important at adult age. The reporting of more mobility problems in young adults with lower levels of gross motor functioning is consistent with other studies of children and young adults with CP.1, 20, 45
Other studies confirm our results regarding the persisting presence of mobility issues in young adults with CP.19, 21, 46 We previously showed that 66% of young adults with CP with normal intelligence experienced unmet mobility needs.19 Donkervoort et al21 recently reported that 31% of participants experienced mobility difficulties related to daily activities and social participation (as measured by the Life-Habits questionnaire). Bax et al46 found that young adults with CP with varying levels of physical and cognitive impairments became less mobile after leaving school and that many did not receive further medical examinations to assess their physical condition after leaving school. Also at adult age, persons with CP reported several types of problems with mobility.22, 47, 48 Andersson and Mattson47 found that nearly half of the adults with CP without learning disabilities could not move independently within the community as desired or required.
Work
Problems in work were experienced less often compared with other domains, but most participants who did mention problems rated them as very important. The small number of participants reporting work problems may reflect the young age of the participants and that they may still be in school rather than working. These problems arose mainly in participants with lower levels of education, who are the ones who had finished their education and are now working or looking for work. Also, other studies report work problems in young adults with CP.21, 49, 50 Therefore, work problems are important to recognize in young adults with CP.
Self-Care, Domestic Tasks, and Leisure
Although self-care is often addressed in pediatric rehabilitation, apparently in young adults with CP problems are still present in this domain. Our results are consistent with previously published studies that show that young adults with CP experience difficulties with daily activities and participation in personal care (21%).21 Studies of adults with CP also show that the execution of self-care tasks (eg, bathing and dressing) poses difficulties.48, 51 Because self-care activities depend primarily on the use of the upper extremities, participants with more impaired manual ability (as determined by MACS level) are probably more prone to problems in these activities.
Problems with the performance of domestic tasks are rarely discussed in the literature. Andren and Grimby48 reported that persons with inborn or early acquired mobility disorders (most of whom had CP) demonstrated the highest level of dependence on aids or other persons for activities related to household tasks. Several of our study respondents indicated that performing domestic tasks was too physically demanding because they needed to conserve energy for work, education, or mobility-related activities.
For leisure activities most participants indicated problems with physically demanding activities (eg, team sports). This is in line with the experienced problems in mobility. No relationships were found with specific personal or CP-related characteristics.
Process of Linking
The process of linking experienced problems on the COPM to ICF domains was easy and provides a way to further categorize problems that young adults with CP experience in daily life. Describing these problems in terms of the ICF might increase the comparability of studies into the experienced problems of young people with disabilities in which different measuring instruments were used.29, 43
Study Limitations
Our study findings may be limited in their generalizability to other countries than the Netherlands and to other CP populations. This study focused on young adults with CP without learning disabilities, whom we expect to be capable of living an independent adult life. The selection criteria produced a cohort of well-functioning young adults, about three quarters of whom functioned at the GMFCS level I and MACS level I. Consequently, generalization of our results is limited to those young adults with CP with normal intelligence and to those with rather high levels of gross motor functioning and manual ability. Also, the moderate associations between personal and CP-related characteristics and experienced problems should be interpreted cautiously.
Implications
When growing into adulthood, young adults with disabilities have to learn a range of life skills that enable them to participate in adult life, such as finding a vocation, traveling to work, and doing housework.7 The current study showed that young adults with CP rated problems in participation as very important. Although topics such as mobility and self-care are frequently addressed in pediatric rehabilitation interventions, problems in these areas might still exist during young adulthood. Furthermore, problems with regard to work and domestic life may appear when the child with CP grows older, which can be indicated as growing into a deficit.21 In this sample with predominantly young adults with high levels of gross motor functioning, mobility still is an important issue. Although the general beliefs may be that those with higher levels of gross motor functioning have little problems in mobility, this study points in another direction. Other problems in mobility may arise when using transportation for work, or in recreation such as going out to a bar (standing for a long time).
The problems that young adults with CP perceive indicate the need for them to acquire life skills that will enable them to participate in adult life.7 Therapists and physicians should be aware that new types of problems may arise when a young adult with CP reaches adulthood, which may warrant other approaches or interventions than in pediatric care. It is important to consider patient experiences and priorities in setting treatment goals for young adults with CP. We used the present study results to develop age-appropriate interventions (in addition to regular rehabilitation appointments) for young adults to address specific areas of participation: work,52 household chores, directing one's own life, pursuing an active lifestyle, and sports participation.18 These are now offered as part of a modular treatment program in a new young adult teams program in the Netherlands.17, 18 Further evaluation of these interventions is needed to improve rehabilitation care for young adults with CP.
Conclusions
Young adults with CP with normal intelligence experienced several problems in daily life. Although frequently addressed during pediatric rehabilitation care, problems with mobility and self-care still prevail in young adults with CP. In addition, during the transition into adulthood, young adults with CP may experience problems regarding domestic life and work, which they consider important.
Supplier
Acknowledgements
The authors thank all young adults who participated in this study. The following members of the Transition Research Group South West Netherlands contributed to this study: Department of Rehabilitation Medicine, Erasmus MC, University Medical Center, Rotterdam (Diana Wiegerink, MSc); Rijndam Rehabilitation Center, Rotterdam (M. P. Bergen, MD, PhD; D. Spijkerman, MD); Sophia Rehabilitation, The Hague (A. de Grund, PT)/Delft (M. Terburg, MD, E. Celen, PT); Rijnlands Rehabilitation Center, Leiden (H. vd Heijden-Maessen, MD); Rehabilitation Center “de Waarden,'' Dordrecht (L.L. Lim, MD); Foundation of Rehabilitation Medicine Zeeland, Goes (Th. Voogt, MSc); Department of Rehabilitation Medicine, Leiden University Medical Center (J. H. Arendzen, MD, PhD; M. S. van Wijlen-Hempel, MD, PhD). The Rehabilitation Center De Hoogstraat, Utrecht (J. W. Gorter, MD, PhD) also cooperated with our study. This research was performed as part of the PERRIN (Pediatric Rehabilitation Research in the Netherlands) research program.
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Supported by the Kinder Fonds Adriaanstichting and Johanna Kinder Fonds (grant no. 2003/0047-063).
No commercial party having a direct financial interest in the results of the research supporting this article has or will confer a benefit on the authors or on any organization with which the authors are associated.
PII: S0003-9993(09)00643-1
doi:10.1016/j.apmr.2009.06.014
© 2009 American Congress of Rehabilitation Medicine. Published by Elsevier Inc. All rights reserved.
Volume 90, Issue 11 , Pages 1891-1897, November 2009
