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Quality of life in youngsters with cerebral palsy after single-event multilevel surgery
e u r o p e a n j o u r n a l o f p a e d i a t r i c n e u r o l o g y 1 7 ( 2 0 1 3 ) 4 0 1 e4 0 6
Official Journal of the European Paediatric Neurology Society
Original article
Quality of life in youngsters with cerebral palsy after single-event multilevel surgery E. Himpens a,*,d, I. Franki a,d, D. Geerts a, R. Tack b, R. Van der Looven b,c, C. Van den Broeck a a
Rehabilitation Sciences and Physiotherapy Ghent, University College ArteveldehogeschooleGhent University, Campus Heymans 2B3, De Pintelaan 185, BE-9000 Ghent, Belgium b VZW Sint-Lodewijk, Wetteren, Belgium c Physical and Rehabilitation Medicine, University Hospital Ghent, Ghent, Belgium
article info
abstract
Article history:
A single event-multilevel surgery (SEMLS) is today a well-established modality of treatment
Received 10 July 2012
in children with cerebral palsy (CP). It comprises muscle lengthening/transfers and
Received in revised form
correction of bony deformities in a single surgical session. Functional improvements after
24 December 2012
SEMLS have been examined thoroughly, however little is known about the impact of SEMLS
Accepted 1 February 2013
on the quality of life (QOL) of children with CP. This study reports on the QOL of children/ adolescents with CP after SEMLS. Forty patients underwent SEMLS and were classified
Keywords:
according GMFCS levels IIeV, age and time span between surgery and questioning. The
Cerebral palsy
Cerebral Palsy Quality of Life Questionnaire for Children (CP QOL-Child) and an author
Single-event multilevel surgery
developed questionnaire were completed to evaluate QOL. Overall, children/adolescents
Quality of life
reported high quality of life scores after SEMLS on the CP QOL-Child. For all the domains of
Cerebral palsy quality of life
the CP QOL-Child the children reported significant higher scores than their parents
questionnaire for children
( p < 0.05). Significant differences ( p < 0.05) were found for the functional-related domains
(CP QOL-Child)
of the CP QOL-Child between GMFCS level III and levels IVeV, but not for the socioemotional domains. Older children at the moment of surgery (15y0m-18y11m) reported significantly less ‘pain and feeling about disability’ than children who were younger when operated on (10y0m-14y11m). Almost all aspects included in the author developed questionnaire improved for the majority of the children after SEMLS. Conclusion: After SEMLS, children with CP report high quality of life, significantly higher than their parents perceived. Function and age may influence specific aspects of QOL after SEMLS. ª 2013 European Paediatric Neurology Society. Published by Elsevier Ltd. All rights reserved.
1.
Introduction
Cerebral palsy (CP) is one of the most common causes of motor disability in childhood. CP describes a group of disorders of
movement and posture causing activity limitations that are attributed to non-progressive disturbances occurring in the developing foetal or infant brain. The motor disorders of CP are often accompanied by disturbances of sensation, cognition,
* Corresponding author. Tel.: þ32 9 332 44 18; fax: þ32 9 332 38 11. E-mail address: [email protected] (E. Himpens). d Equally contributed. 1090-3798/$ e see front matter ª 2013 European Paediatric Neurology Society. Published by Elsevier Ltd. All rights reserved. http://dx.doi.org/10.1016/j.ejpn.2013.02.001
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communication, perception and behaviour, by epilepsy, and by secondary musculoskeletal problems.1 Besides conventional physiotherapy and orthotic management, orthopaedic surgery is often performed to address or prevent the secondary musculoskeletal problems occurring in children with CP.2 A single-event multilevel surgery (SEMLS) is today a wellestablished modality of treatment. It comprises muscle lengthening/transfers and correction of bony deformities in a single surgical session3 leading to decreased total hospitalization time, improved gait parameters, increased joint range of motion, changed x-ray findings, decreased energy expenditure as well as improved functional outcome as measured with the Gross Motor Function Measure (GMFM).4e10 In previous studies, functional improvements after SEMLS have been examined thoroughly, however little is known about the impact of SEMLS on the quality of life (QOL) of children with CP, in particular for the psychosocial and emotional aspects of QOL. Cuomo et al. (2007)11 and Thomason et al. (2011)10 investigated health-related QOL after multilevel surgery in ambulatory patients with CP. Both studies reported improvements in physical function and functional well-being but not in psychosocial well-being. Borowski et al. (2010),12 Gorton et al. (2009)8 and Lee et al. (2009)13 focused mainly on parent-reported measures and paid no or less attention to the perspective of the child itself. Borowski et al. (2010)12 reported a high level of parents’/ guardians satisfaction based on a questionnaire developed by the authors themselves. In the study of Gorton et al. (2009),8 based on the PedsQL and PODCI, a significant improvement in function in comparison with a non surgical group was found. In addition the mean Parent PODCI Expectation subscore was also significantly higher after one year in the surgical group compared to the non surgical group. Lee et al. (2009)13 investigated parental satisfaction after SEMLS in children with CP using a visual analoge scale (0e10). They reported an overall mean (SD) parental satisfaction after surgery of 7.9 (2.0). This latter study is the only study that reported on explanatory variables such as GMFCS level, diagnosis, age at surgery and duration of follow-up. More attention should be paid to the voices of the children since previous studies14e16 showed great discrepancies between child-reported and parent-reported measures. This discrepancy was found not only for healthy children14 but also for children with CP.15,16 Therefore, this study aims to contribute to the knowledge with regard to the QOL of children with CP after SEMLS from the perspective of parents and children and related to GMFCS level, age at the moment of surgery and time span between surgery and questioning.
2.
Methods
Six Flemish schools for special education participated in this study. To be eligible for inclusion in this study all children and adolescents had to be diagnosed with CP and have level IIeV on the GMFCS. At the moment of the study all participants were between 5.0 and 18.11 years old. All children and adolescents underwent SEMLS between 2004 and 2009. SEMLS was defined as muscle lengthening/transfers and/or
correction of bony deformities on one or both limbs, during a single surgical session. Following data were collected from individual files: age, type of CP, level of Gross Motor Function Classification Scale (GMFCS), surgical procedure, operation date. Subsequently the Cerebral Palsy Quality of Life Questionnaire for Children (CP QOL-Child) was completed by the children/adolescents and parents. The CP QOL-Child is a valid and reliable condition-specific QOL questionnaire designed for children with CP.17 It assesses several aspects of a child’s life, including “social well-being and acceptance”, “feelings about functioning”, “participation and physical health”, “emotional well-being” and “pain and feeling about disability”. Two versions of the questionnaire are available: a primary caregiver-proxy report for children aged 4e12 years (66 items) and a self-report form for children aged 9e12 years (52 items).18 Besides the CP QOL-Child the authors also developed a Likert scale-based questionnaire to assess subjective improvements in QOL after SEMLS. This type of scaling is commonly used in research appealing to questionnaires. When responding to a Likert questionnaire item, respondents specify their level of agreement or disagreement on a symmetric agreeedisagree scale for a series of statements. Thus, the range captures the intensity of their feelings for a given item. The questionnaire included 12 statements which all started with “Since my SEMLS...” followed by several all day living activities or feelings. This Likert scale questionnaire was filled out by the children/adolescents. The data were analysed using SPSS 19.0. Medians, ranges and frequencies were estimated from descriptive statistics. In order to gain a general insight into the QOL of children with CP after SEMLS, total scores for every domain of the CP QOL-Child were calculated. This was done for the self-reporting scores of the children as well as for the parental-reporting scores. The self-reports and parental-reports were compared by use of Wilcoxon signed rank test ( p < 0.05). The children/adolescents were also divided into groups according to their functionality (GMFCS levels II, III, IVeV), their age at the moment of surgery (5y0m-9y11m, 10j0m-14j11m, 15j0m-18j11m) and the time between surgery and completing the questionnaires (<1 year ago, 1 till 2 years ago, 2 till 3 years ago and >3 years ago). In order to investigate whether these aspects have a significant impact on the different domains of QOL according to the CP QOL-Child, non-parametric tests were used to deal with the small numbers within the subgroups. A Kruskall Walis test was performed ( p < 0.05) refined with Mann Withney tests. Because of the multiple testing a Bonferroni correction was applied (3 data points, resulting in a critical p-value of <0.016). Further more, the Likert scale-based questionnaire developed by the authors themselves was used to indicate whether the QOL improved or deteriorated after SEMLS in comparison with pre- SEMLS by using descriptive statistics. This study was approved by the ethics committee of the University Hospital of Ghent. All parents and children gave informed consent for scientific use of the data.
3.
Results
A total of 40 children and adolescents participated in this study. Five of them were diagnosed as hemiplegia, 21 as
e u r o p e a n j o u r n a l o f p a e d i a t r i c n e u r o l o g y 1 7 ( 2 0 1 3 ) 4 0 1 e4 0 6
diplegia and 14 as quadriplegia. Seven children/adolescents were classified as GMFCS-level II, 15 as level III, 14 as level IV and respectively 4 participants were classified as level V. The median age at the time of surgery was 11.7years (5.4 y 17.7 y). At the time the questionnaires were performed, the mean age of the participants was 14.2 years (8.8 y 18.8 y). The average time between surgery and performing the questionnaires was 2.4 years (0.3 y and 4.8 y). In 36 participants surgery of both soft and bony tissues was performed. One of the participants only received soft tissue surgery, while in 3 participants only surgery of bony tissues was performed. A total of 31 participants underwent two-level-surgery, 9 participants underwent three-level-surgery. (Table 1). The CP QOL-child was completed by 37 children/adolescents and by 35 parents/guardians. The total scores for every domain of the CP QOL-child reported by patients as well as parents/guardians are presented in Fig. 1. This figure demonstrates high scores on the domains of ‘social well-being and acceptance’, ‘feeling about functioning’, ‘participation and physical health’ and ‘emotional well-being’ after SEMLS. The children/adolescents report significant higher scores ( p < 0.001) than their parents. For the domain ‘pain and feeling about disability’ children/adolescents and parents report both lower scores but are still reporting significantly different ( p ¼ 0.03). Overall parents assume that their children suffer more from ‘pain and feeling about disability’ and experience less quality in live than the children report for themselves. The GMFCS level, age at the moment of surgery and time span between surgery and completing the CP QOL-Child questionnaire were related to every domain of the CP QOLchild (child-reported version) in order to determine their impact on the QOL of the children/adolescents (Table 2).
Table 1 e Demografic information on patient group. Number of patients Type of CP Hemiplegic CP Diplegic CP Quadriplegic CP GMFCS Level II Level III Level IVeV Age at surgery 5y0m-9y11m 10y0m-14y11m 15y0m-18y11m Timespan beteen surgery and questionaire <1year 1e2 years 2e3 years >3 years Surgery 2-level surgery 3-level surgery Soft tissue only Bony tissue only Soft þ bony tissue
5 21 14 7 15 18 11 23 6 8 13 5 14 31 9 1 3 36
403
Fig. 1 e Total scores for every domain of the CP QOL-child. Child-reported versus parent-reported scores. *[ (p<0.001); **[ (p<0.05).
Significant differences were found between GMFCS level III and GMFCS levels IVeV for the following domains of the CP QOL-Child: ‘feelings about functioning’ and ‘pain and feeling about disability’. Children and adolescents who are considered to be less functional (higher GMFCS level) suffer more from pain and their disability and experience less QOL than children and adolescents who are considered to be more functional (lower GMFCS level). Across the different levels of GMFCS social well-being and acceptance is reported equally well. Regarding the different age-categories at the moment of surgery (5y0m-9y11m, 10j0m-14j11m, 15j0m-18j11m) a single significant difference was found. Children who were older at the moment of surgery (15y0m-18y11m) reported significantly less pain and feeling about disability than children who were younger at the time of surgery (10y0m-14y11m). Furthermore, statistical analyses did not reveal significant differences in QOL between the different time intervals with regard to when surgery was performed and the time when the CP QOL-Child questionnaires were completed (<1 year ago, 1 till 2 years ago, 2 till 3 years ago and >3 years ago). To determine differences in QOL before and after SEMLS a Likert-based questionnaire was developed by the authors. This questionnaire was filled out by all participants. The results are presented in Table 3. Mainly all skills/feelings included in this questionnaire improved for the majority of the children. For example 70% of the children felt more happy post-operatively and 50% claimed to have less pain postoperatively. In addition, 72.5% of the children agreed with the statement “Since my surgery I find it easier to walk”. Only two of the children both classified as GMFCS III partially agreed and one child classified as GMFCS II disagreed with this statement. For the more disabled children (GMFCS IVeV) this statement was not relevant. All children who underwent SEMLS less than one year ago agreed or partially agreed on the following statements: “Since my surgery I find it easier to get on and off the toile’t, “Since my surgery I find it easier to walk” and “Since my surgery I am feeling more happy”. Children who underwent surgery more than three years ago all agreed or partially agreed on the statements “Since my surgery I find it easier to dress and undress myself” and “Since my surgery I have less pain”.
404
12.24 (6.25e28.13)
0.03*
4.
26.57 (14.06e34.38)
* p-value indicating a significant difference on Kruskall Wallis testing ( p < 0.05).
28.13 (14.06e39.06) 26.56 (6.25e71.88)
17.19 (6.25e56.25)
34.38 (15.63e71.88)
0.04*
32.56 (6.25e71.88)
0.78 84.38 (64.58e100) 79.17 (54.17e100) 79.17 (60.42e97.92) 0.19 79.17 (60.42e95.83) 79.17 (54.17e100) 83.33 (66.67e97.92) 79.17 (54.17e100)
0.53 76.71 (62.5e94.32) 76.14 (48.86e94.32) 69.32 (62.5e93.18) 0.06 68.18 (48.86e93.18) 76.25 (68.18e93.18) 75.0 (48.86e94.32)
82.95 (61.36e94.32)
0.25 80.73 (71.88e90.63) 73.44 (53.13e88.54) 82.29 (68.75e90.63) 79.17 (35.42e94.79)
81.25 (64.58e94.79)
72.92 (35.42e85.42)
0.04*
81.25 (35.42e94.79)
0.85 81.25 (65.63e95.83) 83.33 (55.21e97.92) 76.04 (71.88e97.92) 0.99 82.95 (56.25e97.92) 79.17 (55.21e97.92) 78.41 (71.29e92.05)
Median (min.emax.) Median (min.emax.) Median (min.emax.) Median (min.emax.)
82.29 (55.21e97.92)
Social well-being and acceptance Feelings about functioning Participation and physical health Emotional well-being Pain and feeling about disability
Median (min.emax.) Median (min.emax.) Median (min.emax.)
15y0m-18y11m (n ¼ 23) 10y0m-14y11m (n ¼ 23) 5y0m-9y11m (n ¼ 8) p-Value GMFCS IVeV (n ¼ 15) GMFCS III (n ¼ 15) GMFCS II (n ¼ 7)
GMFCS level Total (n ¼ 37)
Table 2 e CP QOL-Child questionnaire (child-reported version) in relation to GMFCS level and age at surgery and questioning.
Age at surgery
p-Value
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Discussion
We used the CP QOL-Child and a self-developed likert-based questionnaire to report on the QOL of children with CP after SEMLS. The CP QOL-Child was developed to measure general Health Related QOL and CP-specific QOL. According to Davis et al. (2009)19 and Carlon et al. (2010)17 the CP QOL-child performed strongly on conceptual and psychometric properties for children with CP which makes this questionnaire appropriate for our purpose of investigation. However, the child self-report version and the parent-report version of the CP QOL-Child were developed for children aged 9e12 years and 4e12 years respectively.18 In this study the CP QOL-Child was also completed by younger and older children (5e18, 11 years). Although not compliant to the age limits, it is our believe and experience that the addressed questions were relevant for both the younger and older group of children. When evaluating QOL it is important to search for the perspective of the child itself, however in children and especially children with CP this is not always possible due to the child’s age, language and cognitive abilities.14,15 Therefore it is important and relevant to investigate whether parental reporting is in accordance with child reporting. In this study the children reported for the majority of the domains a significant ( p < 0.001) higher QOL for themselves in comparison to their parents (Fig. 1). In the study of Majnemer et al. (2008)15 children and parents completed the PedQL. For social functioning parental ratings were also significantly lower than the ratings of the children. Also the study of Gates et al. (2010)20 compared self-reporting and parental reporting. They found that adolescents with CP saw themselves as less limited in comparison to their parents. In this study children with CP after SEMLS report good quality of life. This is in accordance with the findings of the European SPARCLE study21 based on the answers of 818 children. In the study of Davis et al. (2009)19 child-reported scores on the CP QOL-Child of 54 children were also represented. In our study children reported higher scores for the domains ‘feelings about functioning’ and ‘participation and physical health’ respectively 79.1 (35.4e94.8) and 75.0 (48.9e94.3) whereas respectively 73.45 (SD: 17.25) and 72.32 (SD: 18.21) in the study of Davis et al. (2009)19 In our study children classified as GMFCS level I were excluded whereas in the study of Davis et al. (2009)19 children of all GMFCS-levels participated. Children classified as GMFCS level I are more functional and as one could expect would have reported higher scores for these particular domains. The reason why the children in our study reported higher scores for “feelings about functioning” and “participation and physical health” is therefore possibly due to the positive effects of SEMLS. This is the first articles that reports on explanatory variables (GMFCS, age at surgery and time span between surgery and questioning) related to the QOL of children/adolescents reported by children/adolescents themselves. To shed some light on possible explanatory variables children/adolescents were divided into three subgroups (even four for time span between surgery and questionnaire). Although nonparametric test where used to adequately deal with this issue, results should be treated with caution as the numbers of children in
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Table 3 e Likert scale questionnaire. Since my surgery. I find it easier to dress and undress myself I find it easier to make a toilet transfer I can tolerate my devices better I am sitting more comfortable in my wheelchair I need less aids I have less pain I am feeling less easily tired I can sleep better I find it easier to walk I can participate better in sports and/or play activities I can do more things I like to do I am feeling happier
Agree n (%)
Partially agree n (%)
Disagree n (%)
13 (32.5) 15 (37.5) 16 (40) 17 (42.5) 15 (37.5) 20 (50) 15 (37.5) 18 (45) 29 (72.5) 14(35) 17 (42.5) 28 (70)
15 (37.5) 12 (30) 10 (25) 8 (20) 13 (32.5) 12 (30) 13 (32.5) 11 (27.5) 2 (5) 17 (42.5) 14 (35) 9 (22.5)
6 (15) 7 (17.5) 8 (20) 9 (22.5) 12 (30) 6 (15) 11 (27.5) 11 (27.5) 1 (2.5) 8 (20) 8 (20) 3 (7.5)
every group is quite small. Further more we need to point out the fact that the time frame since surgery is different for all the children/adolescents included. This might have its impact on the results although no significant differences where found in the specific analyses on this matter. The children and adolescents classified as GMFCS levels IVV reported a significantly lower QOL for the domains “feelings about functioning” and “pain and feeling about disability” in comparison to the children and adolescents classified as GMFCS level III. This is in accordance with the study of Jooyeon et al. (2011)22 who investigated the relationship between function and health-related QOL in school-aged children with CP. They found that more severe functional disabilities were associated with lower physical and psychosocial QOL. In contrast, improvements in physical function and functional well-being do not automatically lead to improvements in psychosocial well-being as often assumed.10,11,23 Also in this study no significant differences were found across the different GMFCS levels for “social well-being and acceptance” and “emotional well-being”. A possible explanation might be that in contrast to “feelings about functioning” and “participation and physical health” psycho-social well-being and emotional well-being are also dependent on other factors than just functionality, such as acceptance from peers, adults and the entire school environment,..These latter factors might be less influenced by SEMLS in contrast to functional improvements. For “pain and feeling about disability” the oldest agecategory reported significantly lower scores in comparison to the children included in the middle age category, indicating that the oldest children suffer less from pain and their disability in comparison to the children who were included in the middle age-category (Table 2). A study of Capjon et al. (2010)24 investigated children’s and parents experiences after SEMLS. They noticed that especially children around the age of 12 dislike to be taken out of class for physical therapy. In addition growth spurt at puberty might also have influenced this outcome, since growth spurt contributes to the development of muscle contractures25 and therefore might be responsible for increased pain.26 To our knowledge no previous studies have investigated the impact of time after SEMLS on QOL in children with CP. In this study no significant differences were found between the different time intervals with regard to when surgery was performed and the time when the CP QOL-Child questionnaires were completed (Table 1). Although there is a lack of studies
Not relevant n (%) 6 (15) 6 (15) 6 (15) 6 (15) e 2 (5) 1 (2.5) e 8 (20) 1 (2.5) 1 (2.5) e
investigating the impact of time after SEMLS on the QOL, Gage et al. (2009)27 have examined the impact of time after SEMLS on function in children with CP. In the first year after SEMLS the children demonstrated a decreased function and an increased dependency. After 12 months their function improved. Literature on QOL of children with CP after SELMS is limited. This study provides important and clinical relevant information on the QOL of children with CP after SEMLS. The results of the Likert scale within this study (Table 3) revealed that the majority of the children and adolescents agreed that their functionality improved after SEMLS, more specifically 70% of the patients reported that they found it easier to walk. Also 70% of the children/adolescents claimed that they are feeling happier post-operatively. These findings point to the fact that for patients this surgery is able to live up to their greatest dream: to walk again which makes them happy. In this study we tried to gain some insights in the improvement of QOL after SELMS by using the Likert scale questionnaire asking questions as ‘since the operation skill X or Y improved’. However when interested in the improvement of QOL after SELMS prospective pre- and post-surgery questioning of children/adolescents is necessary to measure change in QOL before and after surgery. This study is an important first step in elucidating this matter from the point of view of the children.
5.
Conclusion
This study contributes to the knowledge with regard to the QOL of children with CP after SEMLS by questioning children and parents on different aspect of QOL. The results from the CP QOL-Child demonstrated that function (GMFCS levels) and age may influence specific aspects of QOL after SEMLS. In addition, this study indicated that children’s and parents perceptions may differ from each other, which has implications for interpreting the results of a parent proxy report as a substitute for a child-report.
references
1. Rosenbaum P, Paneth N, Leviton A, Goldstein M, Bax M. A report: the definition and classification of cerebral palsy e april 2006. Dev Med Child Neurol 2007;49:8e14.
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2. Papavasiliou A. Management of motor problems in cerebral palsy. A critical update for the clinician. Eur J Paeditr Neurol 2009;13:387e96. 3. Saraph V, Zwick EB, Auner C, et al. Gait improvement surgery in diplegic children. How long do the improvements last? J Peadiatr Orthop 2005;25:263e7. 4. Abel MF, Damiano DL, Pannunzio M, Bush J. Muscle-tendon surgery in diplegic cerebral palsy: functional and mechanical changes. J Pediatr Orthop 1999;19:366e75. 5. Akerstedt A, Risto O, Odman P, Oberg B. Evaluation of single event multilevel surgery and rehabilitation in children and youth with cerebral palsy e a 2-year follow-up study. Disabil Rehabil 2010;32:530e9. 6. Gannotti ME, Gorton GE, Nahorniak MT, Masso PD. Walking abilities of young adults with cerebral palsy: changes after multilevel surgery and adolescence. Gait & Posture 2010;32:46e52. 7. Godwin EM, Spero CR, Nof L, Rosenthal RR, Echternach JL. The gross motor function classification system for cerebral palsy and single-event multilevel surgery: is there a relationship between level of function and intervention over time? J Pediatr Orthop 2009;29:910e5. 8. Gorton GE, Abel MF, Oeffinger DJ, et al. A prospective cohort study of the effects of lower extremity orthopaedic surgery on outcome measures in ambulatory children with cerebral palsy. J Pediatr Orthop 2009;29:903e9. 9. Gupta A, Srivastava A, Taly AB. M Thyloth. Single-stage multilevel soft-tissue surgery in the lower limbs with spastic cerebral palsy: experience from a rehabilitation unit. Indian J Orthop 2008;42:448e53. 10. Thomason P, Baker R, Karen Dodd, et al. Single-event multilevel surgery in children with spastic diplegia. J Bone Jt Surg Am 2011;93:451e60. 11. Cuomo AV, Gamradt SC, Kim CO, et al. Health-related quality of life outcomes improve after multilevel surgery in ambulatory children with cerebral palsy. J Peadiatr Orthop 2007;27:653e7. 12. Borowski A, Kwapisz A, Dorman T, Grzegorzewski Synder M. Evaluation of satisfaction with surgical treatment for musculoskeletal dysfunction in children with cerebral palsy. Ortopedia Traumatologia Rehabilitacja 2010;4:347e52. 13. Lee SH, Chung CY, Park MS, et al. Parental Satisfaction after single-event multilevel surgery in ambulatory children with cerebral palsy. J Pediatr Orthop 2009;29:398e401. 14. Davis E, Nicolas C, Waters E, et al. Parent-proxy and child selfreported health-related quality of life: using qualitative
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Official Journal of the European Paediatric Neurology Society
Original article
Quality of life in youngsters with cerebral palsy after single-event multilevel surgery E. Himpens a,*,d, I. Franki a,d, D. Geerts a, R. Tack b, R. Van der Looven b,c, C. Van den Broeck a a
Rehabilitation Sciences and Physiotherapy Ghent, University College ArteveldehogeschooleGhent University, Campus Heymans 2B3, De Pintelaan 185, BE-9000 Ghent, Belgium b VZW Sint-Lodewijk, Wetteren, Belgium c Physical and Rehabilitation Medicine, University Hospital Ghent, Ghent, Belgium
article info
abstract
Article history:
A single event-multilevel surgery (SEMLS) is today a well-established modality of treatment
Received 10 July 2012
in children with cerebral palsy (CP). It comprises muscle lengthening/transfers and
Received in revised form
correction of bony deformities in a single surgical session. Functional improvements after
24 December 2012
SEMLS have been examined thoroughly, however little is known about the impact of SEMLS
Accepted 1 February 2013
on the quality of life (QOL) of children with CP. This study reports on the QOL of children/ adolescents with CP after SEMLS. Forty patients underwent SEMLS and were classified
Keywords:
according GMFCS levels IIeV, age and time span between surgery and questioning. The
Cerebral palsy
Cerebral Palsy Quality of Life Questionnaire for Children (CP QOL-Child) and an author
Single-event multilevel surgery
developed questionnaire were completed to evaluate QOL. Overall, children/adolescents
Quality of life
reported high quality of life scores after SEMLS on the CP QOL-Child. For all the domains of
Cerebral palsy quality of life
the CP QOL-Child the children reported significant higher scores than their parents
questionnaire for children
( p < 0.05). Significant differences ( p < 0.05) were found for the functional-related domains
(CP QOL-Child)
of the CP QOL-Child between GMFCS level III and levels IVeV, but not for the socioemotional domains. Older children at the moment of surgery (15y0m-18y11m) reported significantly less ‘pain and feeling about disability’ than children who were younger when operated on (10y0m-14y11m). Almost all aspects included in the author developed questionnaire improved for the majority of the children after SEMLS. Conclusion: After SEMLS, children with CP report high quality of life, significantly higher than their parents perceived. Function and age may influence specific aspects of QOL after SEMLS. ª 2013 European Paediatric Neurology Society. Published by Elsevier Ltd. All rights reserved.
1.
Introduction
Cerebral palsy (CP) is one of the most common causes of motor disability in childhood. CP describes a group of disorders of
movement and posture causing activity limitations that are attributed to non-progressive disturbances occurring in the developing foetal or infant brain. The motor disorders of CP are often accompanied by disturbances of sensation, cognition,
* Corresponding author. Tel.: þ32 9 332 44 18; fax: þ32 9 332 38 11. E-mail address: [email protected] (E. Himpens). d Equally contributed. 1090-3798/$ e see front matter ª 2013 European Paediatric Neurology Society. Published by Elsevier Ltd. All rights reserved. http://dx.doi.org/10.1016/j.ejpn.2013.02.001
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communication, perception and behaviour, by epilepsy, and by secondary musculoskeletal problems.1 Besides conventional physiotherapy and orthotic management, orthopaedic surgery is often performed to address or prevent the secondary musculoskeletal problems occurring in children with CP.2 A single-event multilevel surgery (SEMLS) is today a wellestablished modality of treatment. It comprises muscle lengthening/transfers and correction of bony deformities in a single surgical session3 leading to decreased total hospitalization time, improved gait parameters, increased joint range of motion, changed x-ray findings, decreased energy expenditure as well as improved functional outcome as measured with the Gross Motor Function Measure (GMFM).4e10 In previous studies, functional improvements after SEMLS have been examined thoroughly, however little is known about the impact of SEMLS on the quality of life (QOL) of children with CP, in particular for the psychosocial and emotional aspects of QOL. Cuomo et al. (2007)11 and Thomason et al. (2011)10 investigated health-related QOL after multilevel surgery in ambulatory patients with CP. Both studies reported improvements in physical function and functional well-being but not in psychosocial well-being. Borowski et al. (2010),12 Gorton et al. (2009)8 and Lee et al. (2009)13 focused mainly on parent-reported measures and paid no or less attention to the perspective of the child itself. Borowski et al. (2010)12 reported a high level of parents’/ guardians satisfaction based on a questionnaire developed by the authors themselves. In the study of Gorton et al. (2009),8 based on the PedsQL and PODCI, a significant improvement in function in comparison with a non surgical group was found. In addition the mean Parent PODCI Expectation subscore was also significantly higher after one year in the surgical group compared to the non surgical group. Lee et al. (2009)13 investigated parental satisfaction after SEMLS in children with CP using a visual analoge scale (0e10). They reported an overall mean (SD) parental satisfaction after surgery of 7.9 (2.0). This latter study is the only study that reported on explanatory variables such as GMFCS level, diagnosis, age at surgery and duration of follow-up. More attention should be paid to the voices of the children since previous studies14e16 showed great discrepancies between child-reported and parent-reported measures. This discrepancy was found not only for healthy children14 but also for children with CP.15,16 Therefore, this study aims to contribute to the knowledge with regard to the QOL of children with CP after SEMLS from the perspective of parents and children and related to GMFCS level, age at the moment of surgery and time span between surgery and questioning.
2.
Methods
Six Flemish schools for special education participated in this study. To be eligible for inclusion in this study all children and adolescents had to be diagnosed with CP and have level IIeV on the GMFCS. At the moment of the study all participants were between 5.0 and 18.11 years old. All children and adolescents underwent SEMLS between 2004 and 2009. SEMLS was defined as muscle lengthening/transfers and/or
correction of bony deformities on one or both limbs, during a single surgical session. Following data were collected from individual files: age, type of CP, level of Gross Motor Function Classification Scale (GMFCS), surgical procedure, operation date. Subsequently the Cerebral Palsy Quality of Life Questionnaire for Children (CP QOL-Child) was completed by the children/adolescents and parents. The CP QOL-Child is a valid and reliable condition-specific QOL questionnaire designed for children with CP.17 It assesses several aspects of a child’s life, including “social well-being and acceptance”, “feelings about functioning”, “participation and physical health”, “emotional well-being” and “pain and feeling about disability”. Two versions of the questionnaire are available: a primary caregiver-proxy report for children aged 4e12 years (66 items) and a self-report form for children aged 9e12 years (52 items).18 Besides the CP QOL-Child the authors also developed a Likert scale-based questionnaire to assess subjective improvements in QOL after SEMLS. This type of scaling is commonly used in research appealing to questionnaires. When responding to a Likert questionnaire item, respondents specify their level of agreement or disagreement on a symmetric agreeedisagree scale for a series of statements. Thus, the range captures the intensity of their feelings for a given item. The questionnaire included 12 statements which all started with “Since my SEMLS...” followed by several all day living activities or feelings. This Likert scale questionnaire was filled out by the children/adolescents. The data were analysed using SPSS 19.0. Medians, ranges and frequencies were estimated from descriptive statistics. In order to gain a general insight into the QOL of children with CP after SEMLS, total scores for every domain of the CP QOL-Child were calculated. This was done for the self-reporting scores of the children as well as for the parental-reporting scores. The self-reports and parental-reports were compared by use of Wilcoxon signed rank test ( p < 0.05). The children/adolescents were also divided into groups according to their functionality (GMFCS levels II, III, IVeV), their age at the moment of surgery (5y0m-9y11m, 10j0m-14j11m, 15j0m-18j11m) and the time between surgery and completing the questionnaires (<1 year ago, 1 till 2 years ago, 2 till 3 years ago and >3 years ago). In order to investigate whether these aspects have a significant impact on the different domains of QOL according to the CP QOL-Child, non-parametric tests were used to deal with the small numbers within the subgroups. A Kruskall Walis test was performed ( p < 0.05) refined with Mann Withney tests. Because of the multiple testing a Bonferroni correction was applied (3 data points, resulting in a critical p-value of <0.016). Further more, the Likert scale-based questionnaire developed by the authors themselves was used to indicate whether the QOL improved or deteriorated after SEMLS in comparison with pre- SEMLS by using descriptive statistics. This study was approved by the ethics committee of the University Hospital of Ghent. All parents and children gave informed consent for scientific use of the data.
3.
Results
A total of 40 children and adolescents participated in this study. Five of them were diagnosed as hemiplegia, 21 as
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diplegia and 14 as quadriplegia. Seven children/adolescents were classified as GMFCS-level II, 15 as level III, 14 as level IV and respectively 4 participants were classified as level V. The median age at the time of surgery was 11.7years (5.4 y 17.7 y). At the time the questionnaires were performed, the mean age of the participants was 14.2 years (8.8 y 18.8 y). The average time between surgery and performing the questionnaires was 2.4 years (0.3 y and 4.8 y). In 36 participants surgery of both soft and bony tissues was performed. One of the participants only received soft tissue surgery, while in 3 participants only surgery of bony tissues was performed. A total of 31 participants underwent two-level-surgery, 9 participants underwent three-level-surgery. (Table 1). The CP QOL-child was completed by 37 children/adolescents and by 35 parents/guardians. The total scores for every domain of the CP QOL-child reported by patients as well as parents/guardians are presented in Fig. 1. This figure demonstrates high scores on the domains of ‘social well-being and acceptance’, ‘feeling about functioning’, ‘participation and physical health’ and ‘emotional well-being’ after SEMLS. The children/adolescents report significant higher scores ( p < 0.001) than their parents. For the domain ‘pain and feeling about disability’ children/adolescents and parents report both lower scores but are still reporting significantly different ( p ¼ 0.03). Overall parents assume that their children suffer more from ‘pain and feeling about disability’ and experience less quality in live than the children report for themselves. The GMFCS level, age at the moment of surgery and time span between surgery and completing the CP QOL-Child questionnaire were related to every domain of the CP QOLchild (child-reported version) in order to determine their impact on the QOL of the children/adolescents (Table 2).
Table 1 e Demografic information on patient group. Number of patients Type of CP Hemiplegic CP Diplegic CP Quadriplegic CP GMFCS Level II Level III Level IVeV Age at surgery 5y0m-9y11m 10y0m-14y11m 15y0m-18y11m Timespan beteen surgery and questionaire <1year 1e2 years 2e3 years >3 years Surgery 2-level surgery 3-level surgery Soft tissue only Bony tissue only Soft þ bony tissue
5 21 14 7 15 18 11 23 6 8 13 5 14 31 9 1 3 36
403
Fig. 1 e Total scores for every domain of the CP QOL-child. Child-reported versus parent-reported scores. *[ (p<0.001); **[ (p<0.05).
Significant differences were found between GMFCS level III and GMFCS levels IVeV for the following domains of the CP QOL-Child: ‘feelings about functioning’ and ‘pain and feeling about disability’. Children and adolescents who are considered to be less functional (higher GMFCS level) suffer more from pain and their disability and experience less QOL than children and adolescents who are considered to be more functional (lower GMFCS level). Across the different levels of GMFCS social well-being and acceptance is reported equally well. Regarding the different age-categories at the moment of surgery (5y0m-9y11m, 10j0m-14j11m, 15j0m-18j11m) a single significant difference was found. Children who were older at the moment of surgery (15y0m-18y11m) reported significantly less pain and feeling about disability than children who were younger at the time of surgery (10y0m-14y11m). Furthermore, statistical analyses did not reveal significant differences in QOL between the different time intervals with regard to when surgery was performed and the time when the CP QOL-Child questionnaires were completed (<1 year ago, 1 till 2 years ago, 2 till 3 years ago and >3 years ago). To determine differences in QOL before and after SEMLS a Likert-based questionnaire was developed by the authors. This questionnaire was filled out by all participants. The results are presented in Table 3. Mainly all skills/feelings included in this questionnaire improved for the majority of the children. For example 70% of the children felt more happy post-operatively and 50% claimed to have less pain postoperatively. In addition, 72.5% of the children agreed with the statement “Since my surgery I find it easier to walk”. Only two of the children both classified as GMFCS III partially agreed and one child classified as GMFCS II disagreed with this statement. For the more disabled children (GMFCS IVeV) this statement was not relevant. All children who underwent SEMLS less than one year ago agreed or partially agreed on the following statements: “Since my surgery I find it easier to get on and off the toile’t, “Since my surgery I find it easier to walk” and “Since my surgery I am feeling more happy”. Children who underwent surgery more than three years ago all agreed or partially agreed on the statements “Since my surgery I find it easier to dress and undress myself” and “Since my surgery I have less pain”.
404
12.24 (6.25e28.13)
0.03*
4.
26.57 (14.06e34.38)
* p-value indicating a significant difference on Kruskall Wallis testing ( p < 0.05).
28.13 (14.06e39.06) 26.56 (6.25e71.88)
17.19 (6.25e56.25)
34.38 (15.63e71.88)
0.04*
32.56 (6.25e71.88)
0.78 84.38 (64.58e100) 79.17 (54.17e100) 79.17 (60.42e97.92) 0.19 79.17 (60.42e95.83) 79.17 (54.17e100) 83.33 (66.67e97.92) 79.17 (54.17e100)
0.53 76.71 (62.5e94.32) 76.14 (48.86e94.32) 69.32 (62.5e93.18) 0.06 68.18 (48.86e93.18) 76.25 (68.18e93.18) 75.0 (48.86e94.32)
82.95 (61.36e94.32)
0.25 80.73 (71.88e90.63) 73.44 (53.13e88.54) 82.29 (68.75e90.63) 79.17 (35.42e94.79)
81.25 (64.58e94.79)
72.92 (35.42e85.42)
0.04*
81.25 (35.42e94.79)
0.85 81.25 (65.63e95.83) 83.33 (55.21e97.92) 76.04 (71.88e97.92) 0.99 82.95 (56.25e97.92) 79.17 (55.21e97.92) 78.41 (71.29e92.05)
Median (min.emax.) Median (min.emax.) Median (min.emax.) Median (min.emax.)
82.29 (55.21e97.92)
Social well-being and acceptance Feelings about functioning Participation and physical health Emotional well-being Pain and feeling about disability
Median (min.emax.) Median (min.emax.) Median (min.emax.)
15y0m-18y11m (n ¼ 23) 10y0m-14y11m (n ¼ 23) 5y0m-9y11m (n ¼ 8) p-Value GMFCS IVeV (n ¼ 15) GMFCS III (n ¼ 15) GMFCS II (n ¼ 7)
GMFCS level Total (n ¼ 37)
Table 2 e CP QOL-Child questionnaire (child-reported version) in relation to GMFCS level and age at surgery and questioning.
Age at surgery
p-Value
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Discussion
We used the CP QOL-Child and a self-developed likert-based questionnaire to report on the QOL of children with CP after SEMLS. The CP QOL-Child was developed to measure general Health Related QOL and CP-specific QOL. According to Davis et al. (2009)19 and Carlon et al. (2010)17 the CP QOL-child performed strongly on conceptual and psychometric properties for children with CP which makes this questionnaire appropriate for our purpose of investigation. However, the child self-report version and the parent-report version of the CP QOL-Child were developed for children aged 9e12 years and 4e12 years respectively.18 In this study the CP QOL-Child was also completed by younger and older children (5e18, 11 years). Although not compliant to the age limits, it is our believe and experience that the addressed questions were relevant for both the younger and older group of children. When evaluating QOL it is important to search for the perspective of the child itself, however in children and especially children with CP this is not always possible due to the child’s age, language and cognitive abilities.14,15 Therefore it is important and relevant to investigate whether parental reporting is in accordance with child reporting. In this study the children reported for the majority of the domains a significant ( p < 0.001) higher QOL for themselves in comparison to their parents (Fig. 1). In the study of Majnemer et al. (2008)15 children and parents completed the PedQL. For social functioning parental ratings were also significantly lower than the ratings of the children. Also the study of Gates et al. (2010)20 compared self-reporting and parental reporting. They found that adolescents with CP saw themselves as less limited in comparison to their parents. In this study children with CP after SEMLS report good quality of life. This is in accordance with the findings of the European SPARCLE study21 based on the answers of 818 children. In the study of Davis et al. (2009)19 child-reported scores on the CP QOL-Child of 54 children were also represented. In our study children reported higher scores for the domains ‘feelings about functioning’ and ‘participation and physical health’ respectively 79.1 (35.4e94.8) and 75.0 (48.9e94.3) whereas respectively 73.45 (SD: 17.25) and 72.32 (SD: 18.21) in the study of Davis et al. (2009)19 In our study children classified as GMFCS level I were excluded whereas in the study of Davis et al. (2009)19 children of all GMFCS-levels participated. Children classified as GMFCS level I are more functional and as one could expect would have reported higher scores for these particular domains. The reason why the children in our study reported higher scores for “feelings about functioning” and “participation and physical health” is therefore possibly due to the positive effects of SEMLS. This is the first articles that reports on explanatory variables (GMFCS, age at surgery and time span between surgery and questioning) related to the QOL of children/adolescents reported by children/adolescents themselves. To shed some light on possible explanatory variables children/adolescents were divided into three subgroups (even four for time span between surgery and questionnaire). Although nonparametric test where used to adequately deal with this issue, results should be treated with caution as the numbers of children in
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Table 3 e Likert scale questionnaire. Since my surgery. I find it easier to dress and undress myself I find it easier to make a toilet transfer I can tolerate my devices better I am sitting more comfortable in my wheelchair I need less aids I have less pain I am feeling less easily tired I can sleep better I find it easier to walk I can participate better in sports and/or play activities I can do more things I like to do I am feeling happier
Agree n (%)
Partially agree n (%)
Disagree n (%)
13 (32.5) 15 (37.5) 16 (40) 17 (42.5) 15 (37.5) 20 (50) 15 (37.5) 18 (45) 29 (72.5) 14(35) 17 (42.5) 28 (70)
15 (37.5) 12 (30) 10 (25) 8 (20) 13 (32.5) 12 (30) 13 (32.5) 11 (27.5) 2 (5) 17 (42.5) 14 (35) 9 (22.5)
6 (15) 7 (17.5) 8 (20) 9 (22.5) 12 (30) 6 (15) 11 (27.5) 11 (27.5) 1 (2.5) 8 (20) 8 (20) 3 (7.5)
every group is quite small. Further more we need to point out the fact that the time frame since surgery is different for all the children/adolescents included. This might have its impact on the results although no significant differences where found in the specific analyses on this matter. The children and adolescents classified as GMFCS levels IVV reported a significantly lower QOL for the domains “feelings about functioning” and “pain and feeling about disability” in comparison to the children and adolescents classified as GMFCS level III. This is in accordance with the study of Jooyeon et al. (2011)22 who investigated the relationship between function and health-related QOL in school-aged children with CP. They found that more severe functional disabilities were associated with lower physical and psychosocial QOL. In contrast, improvements in physical function and functional well-being do not automatically lead to improvements in psychosocial well-being as often assumed.10,11,23 Also in this study no significant differences were found across the different GMFCS levels for “social well-being and acceptance” and “emotional well-being”. A possible explanation might be that in contrast to “feelings about functioning” and “participation and physical health” psycho-social well-being and emotional well-being are also dependent on other factors than just functionality, such as acceptance from peers, adults and the entire school environment,..These latter factors might be less influenced by SEMLS in contrast to functional improvements. For “pain and feeling about disability” the oldest agecategory reported significantly lower scores in comparison to the children included in the middle age category, indicating that the oldest children suffer less from pain and their disability in comparison to the children who were included in the middle age-category (Table 2). A study of Capjon et al. (2010)24 investigated children’s and parents experiences after SEMLS. They noticed that especially children around the age of 12 dislike to be taken out of class for physical therapy. In addition growth spurt at puberty might also have influenced this outcome, since growth spurt contributes to the development of muscle contractures25 and therefore might be responsible for increased pain.26 To our knowledge no previous studies have investigated the impact of time after SEMLS on QOL in children with CP. In this study no significant differences were found between the different time intervals with regard to when surgery was performed and the time when the CP QOL-Child questionnaires were completed (Table 1). Although there is a lack of studies
Not relevant n (%) 6 (15) 6 (15) 6 (15) 6 (15) e 2 (5) 1 (2.5) e 8 (20) 1 (2.5) 1 (2.5) e
investigating the impact of time after SEMLS on the QOL, Gage et al. (2009)27 have examined the impact of time after SEMLS on function in children with CP. In the first year after SEMLS the children demonstrated a decreased function and an increased dependency. After 12 months their function improved. Literature on QOL of children with CP after SELMS is limited. This study provides important and clinical relevant information on the QOL of children with CP after SEMLS. The results of the Likert scale within this study (Table 3) revealed that the majority of the children and adolescents agreed that their functionality improved after SEMLS, more specifically 70% of the patients reported that they found it easier to walk. Also 70% of the children/adolescents claimed that they are feeling happier post-operatively. These findings point to the fact that for patients this surgery is able to live up to their greatest dream: to walk again which makes them happy. In this study we tried to gain some insights in the improvement of QOL after SELMS by using the Likert scale questionnaire asking questions as ‘since the operation skill X or Y improved’. However when interested in the improvement of QOL after SELMS prospective pre- and post-surgery questioning of children/adolescents is necessary to measure change in QOL before and after surgery. This study is an important first step in elucidating this matter from the point of view of the children.
5.
Conclusion
This study contributes to the knowledge with regard to the QOL of children with CP after SEMLS by questioning children and parents on different aspect of QOL. The results from the CP QOL-Child demonstrated that function (GMFCS levels) and age may influence specific aspects of QOL after SEMLS. In addition, this study indicated that children’s and parents perceptions may differ from each other, which has implications for interpreting the results of a parent proxy report as a substitute for a child-report.
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