Quality of life of children suffering from motor disabilities as evaluated by their parents.
Quality of life is a multidimensional construct, involving the assessment of psychological, social, economic, physical, and other domains that may be targeted in rehabilitation counseling . Nowadays, quality of life is a matter of interest to the fields of medicine, psychology, and sociology [4,5].
Assessment of the quality of life of children and adolescents with motor disabilities is influenced by the child's disability itself . In the past decade, health status and health-related quality of life (HRQOL) instruments have been developed [7,8]. Some generic HRQOL questionnaires have already been used with cerebral palsy (CP) patients, and they have confirmed physical and psychosocial impairments .
The Child Health Questionnaire (CHQ-PF28) is a research tool designed to assess the quality of life of children and adolescents from the point of view of their parents. The CHQ was developed in the United States and has since been cross-culturally validated in 21 languages [8,9]. The CHQ-PF28 was developed specifically for children; therefore, it includes scales that consider the effects of the child's health on family functioning as well as specific scales such as behavior and self-esteem.
Motor disabilities include a variety of movement disorders that may be caused by many different factors and that always result in limitation of movement .
Research on quality of life enables us to detect abnormalities in the psychosocial development and functioning within a group and the family. The CHQ-PF28 has been used in populations of children with CP . Children with CP have permanent and non-progressive developmental disorders. In spite of medical treatment and rehabilitation, several motor limitations can affect functionality and abilities required for activities of daily living .
CP occurs in 2 to 3 cases per 1,000 live births across Europe. Myelomeningocele (MMC) is the most common neurological congenital anomaly. The incidence is approximately 1 case per 1,000 in the US and ranges from 7.7 in the United Arab Emirates to 11.7 in South America . The prevalence of MMC in Poland is 6.2 per 10,000 births .
In children with MMC, the level of the spinal lesion affects function, almost always leading to the impairment of the lower extremities, neurogenic bladder, and other orthopedic complications. Children with sacral MMC levels can usually move effectively in their surroundings and walk independently . However, children with lumbar or thoracic MMC levels need walking aids and/or a wheelchair for mobility. In addition, in MMC, higher level defects are associated both with greater severity of brain malformations and poorer cognitive and motor outcomes, most likely because of greater impairment in the brain structure.
MMC is often associated with hydrocephalus that may require treatment with a diversionary shunt. Furthermore, children with severe hydrocephalus tend to have low IQs . Almost all children with MMC have neurogenic bladder. Management of neurogenic bladder conditions requires patient education and may include interventions such as timed voiding, manual expression, medications, and intermittent catheterization .
From the literature, it is well known that many children with motor disabilities have poor hand function and visuospatial impairment . Children with CP and MMC often also have a dysfunction of the bowels known as neurogenic bowels.
The ability to walk represents one of our most important skills. During the evaluation of CP or MMC, parents almost always ask doctors whether their child will walk independently. Children with motor disabilities are particularly vulnerable to lower quality of life . Although children with motor disabilities often have intellectual impairments that render them unable to self-report, the need to assess these children's quality of life is no less important.
To our knowledge, no studies have been conducted in children with motor disabilities that evaluated their quality of life with the CHQ-PF28 in Poland.
The aim of this study was to present the parents' evaluations of the quality of life of their children suffering from the abovementioned motor disabilities in comparison with healthy children.
MATERIALS AND METHODS
The study included 105 parents of children and adolescents aged 5-18 years (48 girls and 57 boys) with motor disabilities (CP, MMC, erebro-cranial traumas) treated at the Department of Pediatric Rehabilitation. The study group consisted of 59 children (56.2%) suffering from CP, 35 children (33.3%) suffering from MMC, and 11 children (10.5%) suffering from traumatic brain injury. The age of the children ranged from 6 to 18 years (on average 13.2 [+ or -] 4 years old). Mean parental age was 41.3 [+ or -] 1.8 years (range 24-72). Ninety-three percent were mothers and 7% were fathers; 56% had an elementary education, 8% had completed higher vocational education, and 36% had a university education. The control group comprised of research conducted on groups of healthy children (1718 children, 928 girls and 790 boys) by . The age of the children ranged from 11 to 16 years (on average 13.5 [+ or -] 1.7 years old).
The children with CP were each assigned a score according to the Gross Motor Function Classification System (GMFCS) by an occupational therapist as follows: level I - walks without restrictions; II - walks without assistive devices, limitations in walking outdoors; III - walks with assistive devices; IV - self-mobility with limitations, children are transported or use powered mobility; V- self-mobility is severely limited. The motor function in patients with MMC was defined according to Hoffer et al.  as 4 categories - community, household, nonfunctional, and nonambulators - scored 4 to 1.
We used the Polish version of the CHQ-PF28 to assess the quality of life of children and adolescents with motor disabilities. CHQ-PF28 is a research tool designed to assess the quality of life of children and adolescents from the point of view of parents. It is used to measure health in the context of physical and psychosocial functioning. In this two-dimensional model of health, 10 sub-dimensions can be distinguished: General health perception, Physical fitness, Physical limitations in performing social roles, Emotional limitations in performing social roles, Feeling pain, Behavior, Mental health, Self-esteem (overall satisfaction), Parental involvement--emotional dimension, and Parental involvement--time management dimension. The questionnaire also includes questions concerning family functioning: Family activity and Family cohesion. It also contains a question relating to changes in the child's health in the last year. The individual sub-scales of the CHQ-PF28 questionnaire consist of one to five questions. The score of questions is positive: the higher the number of points, the better the parents' evaluation of the quality of life of a child in that particular area. Thus, a low score indicates parents' dissatisfaction with a child's quality of life in a given area.
We asked 130 parents to complete the CHQ-PF28 parent questionnaire during a visit to the clinic. Parents filled out the form at home. Parent reports of their child's quality of life were obtained for 105 children (80.7%). Twenty five parents did not complete the questionnaire (18 mothers and 7 fathers). The study of the quality of life of children and adolescents suffering from motor disabilities based on CHQ-PF28 questionnaires filled out by their parents received approval of the bioethics committee of the Medical University of Bialystok, Poland.
Differences were measured by the level of significance p and the ratio of the size of the effect known as Cohen's d statistics. A Cohen's d value above 0.2 indicates a significant difference, a value from 0.5 to 0.8 denotes an average difference, and a value above 0.8 indicates a large difference between the averages. The differences between the groups were determined using the parametric t-test. Spearman's analysis was used to measure the interrelationships of the CHQ-PF28 subscales and the independent walking of children with motor disabilities. Statistical significance was defined as p < 0.05.
The studied groups were comparable (no significant difference) in terms of age, sex, residence, and family structure. Eighty-two percent of the children lived in two-parent families and 18% lived in single-parent families (p<0.001). Patients with CP were more frequently classified into levels II (n=25) and III (n=13) of the GMFCS; other patients were classified into levels IV (n=9) and V (n=12). None of the children was classified into level I. Three patients with MMC were able to walk in the community (score of 4), 10 were able to walk in the home and in the nearby environment (scores of 3 and 2), and 21 primarily used a wheelchair for ambulation (score of 1). Patients with other disorders were classified more often into levels II (n=7) and I (n=2); other patients were classified into levels III (n=1) and V (n=3).
Significant correlations between independent walking and physical functioning, general behavior, and mental health of children suffering from motor disabilities were found (Table 1).
Table 2 compares the average indices of the sub-scales of the CHQ-PF28 questionnaire and two dimensions of health: physical and psychosocial. Parents of healthy children evaluated family cohesion the lowest (59.56 (20.07)) and emotional limitations in performing social roles the highest (96.75 (12.88)). Parents of children with motor disabilities evaluated parental involvement--emotional dimension the lowest (27.26 (29.56)) and mental health the highest (73.17 (19.51)). The differences are significant in most of the sub-scales (<0.001).
The obtained results proved that the biggest differences in the case of children suffering from motor disabilities occurred in behavior and change of health status, while the smallest differences were seen in self-esteem (overall satisfaction) and parental involvement --emotional dimension. Details are shown in Table 3. In the case of the healthy children, the biggest differences occurred in feeling pain, behavior, and self-esteem, while the smallest ones can be found in the change of health status and physical activity.
Table 4 illustrates that no substantial differences were observed in the assessment of quality of life. The biggest difference occurred in the assessment of mental health while the smallest in physical limitations in performing social roles, family cohesion, and feeling pain.
Our results showed considerable differences in feeling pain among children with motor disabilities and healthy children. Our findings are in agreement with previous reports on quality-of life studies in children and adolescents with motor disabilities . Disabled children require constant appointments at specialist clinics and frequent rehabilitation that takes many hours. This may be sometimes unpleasant and painful, which translates into a lowered quality of life of a disabled child . It is worth remembering how crucial the individual approach towards a child that tries to regain physical fitness is. The fact that a child accepts a set of exercises contributes to a successful therapeutic process. The lack of acceptance of a child's disease by his/her parents, though, often delays the process of proper rehabilitation .
In the current study, more than 90 percent of mothers and only 7% of fathers reported their child's quality of life. We did not use the patient form of the CHQ-PF28 questionnaire. Earlier reports have indicated that parents and children frequently disagree in the assessment of quality of life . Therefore, parent reports should not be considered substitutes for children's self-reports but rather as complementary information. It has been suggested that other proxies be sought to complement parent reports.
Flangan et al.  found that patients with MMC with worse functional mobility and a shunt had lower health-related quality of life than patients with better motor activity. Similarly, Danielsson et al.  found that nonambulatory patients with MMC had a significantly lower quality of life. In our study, most patients could walk, but patients with MMC used wheelchairs.
Patients with motor disabilities usually have one or more additional impairment. In a study by Stacin et al. , adolescents who sustained severe traumatic brain injury had lower HRQL related to overall psychosocial functioning and in the domains of behavior, mental health, general health, and family impact.
The GMFCS level generally had little effect on health-related quality-of-life differences. Gates et al.  determined whether there was a difference between perspectives of functioning and health-related quality of life of parents and adolescents with spastic CP. They found that parents and adolescents agreed more on functioning than health-related quality of life. Parents and adolescents both recognized significant comorbidities, but adolescents saw themselves as less limited than their parents did.
In contrast, Vargus-Adams  demonstrated the CHQ physical functioning subscale was correlated with severity of CP, as reflected by the GMFCS, which supports the overall validity of the physical functioning subscale, because GMFCS is by definition a ranking of physical functioning. These findings are partially in agreement with our results. Quality of life largely increases with the adjustment of housing conditions to the needs of a disabled child. However, difficulty in using public transport and architectural barriers become more likely to reduces the willingness to participate actively in social life and significantly reduces participation in sports, recreation, and rehabilitation [13,15]. Our findings confirm a reduction in performing social roles of children with disabilities compared with healthy children.. One of the biggest concerns of children with motor disabilities is the fear of being rejected by their peers because of their abnormalities . The self-esteem of a child isolated from his peers is significantly reduced. In our study, we also confirmed reduced self-esteem of disabled children compared with healthy children. Having a disabled child in a family causes many problems of an educational, emotional, and social nature.
Current research shows that parental involvement is significantly higher among parents of disabled children than parents of healthy children. Difficult situations lead to high levels of emotional tension. Parents are worried that they will not be able to handle problems that arise from the need to care for and rehabilitate a child and the difficulties of everyday life. The data from the literature [15,23,24] show that families of children suffering from motor disabilities battle with a number of problems, for example, the necessity for one parent to give up their job, medicines, and rehabilitation. These data are in agreement with our results. The Parental impact--time management dimension was lower in parents of disabled children .
The limitations of the study include lack of examination of economic status of the families, rehabilitation success, and heterogeneous patients with motor disabilities.
Conflicts of interest
There is no conflicts of interest.
[1.] Au KS, Ashley-Koch A, Northrup H. Epidemiologic and genetic aspects of spina bifida and other neural tube defects. Dev Disabil Res Rev 2010;16(1):6-15
[2.] Bishop M, Chapin MH, Miller S. Quality of life assessment in the measurement of rehabilitation outcomes. J Rehabil 2008;74(1): 45-54.
[3.] Danielsson AJ, Bartonek A, Levey E, McHale K, Sponseller P, Saraste H. Associations between orthopaedic findings, ambulation and health-related quality of life in children with myelomeningocele. J Child Orthop 2008 Feb;2(1):45-54.
[4.] De Civita M, Regier D, Alamgir AH, Anis AH, Fitzgerald MJ, Marra CA. Evaluating health-related quality-of-life studies in paediatric populations, some conceptual, methodological and developmental considerations and recent applications. Pharmacoeconomics 2005;23(7):659-85.
[5.] Dijkers MP. Individualization in quality of life measurement, instruments and approaches. Arch Phys Med Rehabil 2003 Apr;84(4 Suppl): S3-14.
[6.] Petry K, Maes B, Vlaskamp C. Measuring the quality of life of people with profound multiple disabilities using the QOL-PMD, first results. Res Dev Disabil 2009Nov-Dec; 30(6):1394-405.
[7.] Erickson SJ, Montague EQ, Gerstle MA. Health-related quality of life in children with moderate-to-severe traumatic brain injury. Dev Neurorehabil 2010;13(3):175-81.
[8.] Flanagan A, Gorzkowski M, Altiok H. Hassani S, Ahn KW. Activity level, functional health, and quality of life of children with myelomeningocele as perceived by parents. Clin Orthop Relat Res 2011 May;469 (5):1230-5.
[9.] Gates P, Otsuka N, Sanders J, McGee-Brown J. Functioning and health-related quality of life of adolescents with cerebral palsy. Self versus parent perspectives. Dev Med Child Neurol 2010 Sep;52(9):843-9.
[10.] 10.Gillberg C. Deficits in attention, motor control, and perception, a brief review. Arch Dis Child 2003 Oct;8(10):904-10.
[11.] Stancin T, Drotar D, Taylor HG, Yeates KO, Wade SL, Minich NM. Health-related quality of life of children and adolescents after traumatic brain injury. Pediatrics 2002 Feb; 109(2):E34.
[12.] Kulak W, Sobaniec W, Smigielska-Kuzia J, Kubas, B, Walecki J. A comparison of spastic diplegic and tetraplegic cerebral palsy. Pediatr Neurol 2005 May;32(5):311-7.
[13.] Sawulicka-Oleszczuk H, Kostuch M. Influence of folic acid in primary prevention of neural tube defects. Ginekol Pol 2003;74:533-7. (Polish)
[14.] Norrlin S, Strinnholm M, Carlsson M, Dahl M. Factors of significance for mobility in children with myelomeningocele. Acta Paediatr 2003;92(2):204-10.
[15.] .Lindquist B, Carlsson G, Persson EK, Uvebrant, P. Learning disabilities in a population-based group of children with hydrocephalus. Acta Paediatr 2005 Jul;94(7):878-3.
[16.] Malkowska-Szkutnik A, Tabak I, Mazur J. Application of the Polish version of CHQ-PF28 questionnaire in two population studies carried out in 2003 and 2008. Med Wiek Rozwoj 2010 Jul-Sep;14(3):246-59. (Polish)
[17.] Hoffer MM, Feiwell E, Perry R, Perry J, Bonnett C. Functional ambulation in patients with myelomeningocele. J Bone Joint Surg 1973 Jan;55(1):137-48.
[18.] Russo RN, Miller MD, Haan E, Cameron ID, Crotty M. Pain characteristics and their association with quality of life and self-concept in children with hemiplegic cerebral palsy identified from a population register. Clin J Pain 2008 May;249(4):335-42.
[19.] Whittingham K, Wee D, Boyd R. Systematic review of the efficacy of parenting inter-ventions for children with cerebral palsy. Child Care Health Dev 2011 Jul;37(4):475-83.
[20.] 20.Stancin T, Drotar D, Taylor HG, Yeates KO, Wade SL, Minich NM. Health related quality of life of children and adolescents after traumatic brain injury. Pediatrics 2002 Feb;109(2): E34
[21.] 21.Vargus-Adams JN. Inconsistencies with physical functioning and the child health questionnaire in children with cerebral palsy. J Pediatr 2008 Aug;153(2):199-202.
[22.] 22. Davis E, Reddihough D, Murphy N, Epstein A, Reid SM, Whitehouse A, Williams K, Leonard H, Downs J. Exploring quality of life of children with cerebral palsy and intellectual disability: What are the important domains of life? Child Care Health Dev 2017 Nov;43(6):854-60.
[23.] Noreau L, Lepage C, Boissiere L, Picard R, Fougeyrollas P, Mathieu J, Desmarais G, Nadeau L. Measuring participation in children with disabilities using the Assessment of Life Habits. Dev Med Child Neurol 2007 Sep;49(9):666-71
[24.] Zekovic B, Renwick R. Quality of life for children and adolescents with developmental disabilities: review of conceptual and methodological issues relevant to public policy. Disabil Soc 2003;18:19-34.
[25.] Kersh J, Hedvat TT, Hauser-Cram P, Warfield ME. The contribution of marital quality to the well-being of parents of children with developmental disabilities. J. Intellect. Disabil Res 2006 Dec:50(Pt 12):883-93.
Wojtkowski J. (A-F*), Sienkiewicz D. (E.F), Okurowska-Zawada B. (B,C,F), Paszko-Patej G. (E,F), Konopka A. (E,F), Okulczyk K. (E,F), Sredzinska K. (E,F), Dmitruk E. (E,F), Mirska A. (E,F), Kulak W. (C,E,F)
Department of Pediatric Rehabilitation, Medical University of Bialystok, Bialystok, Poland
(A) - Conception and study design; (B) - Collection of data; (C) - Data analysis; (D) - Writing the paper; (E) - Review article; (F) - Approval of the final version of the article; (G) - Other
(*) Corresponding author:
Janusz Wojtkowski, Department of Pediatric Rehabilitation, Medical University of Bialystok, ul. Waszyngtona 17, 15-274 Bialystok, Poland e-mail:firstname.lastname@example.org
Received: 02.11. 2016
Table 1. Correlations between independent walking and the CHQ-PF28 dimensions of children suffering from motor disabilities CHQ-PF28 dimensions R P value Physical functioning 0.288 0.003 Role functioning: emotional/behaviour -0.02 0.818 Role functioning: physical -0.110 0.259 Bodily pain -0.049 0.615 General behaviour -0.262 0.007 Mental health -0.209 0.031 Self-esteem -0.143 0.145 General health perception -0.123 0.210 Change in health -0.006 0.954 Parental impact: emotional -0.099 0.310 Parental impact: time -0.068 0.4873 Family activities -0.003 0.9710 Family cohesion 0.0761 0.4401 Physical health -0.193 0.0483 Psychosocial health 0.0854 0.4918 R- Spearman rank correlation coefficient Table 2. Differences in the average assessment of CHQ-PF28 dimensions of children suffering from motor disabilities to healthy children CHQ-PF28 dimensions Children suffering from motor Control disabilities group P Mean SD Mean SD value Physical fitness 36.83 33.56 92.05 18.20 <0.001 Emotional limitations in 68.57 35.75 96.75 12.88 <0.001 performing social roles Physical limitations in 72.70 33.26 94.13 17.13 <0.001 performing social roles Feeling pain 66.10 27.89 79.85 18.67 <0.001 Behaviour 55.58 19.56 67.07 16.68 <0.001 Mental health 73.17 19.51 70.6 15.09 0.049 Self-esteem (overall 71.27 16.90 78.2 13.42 <0.001 satisfaction) General health perception 32.07 13.59 61.64 19.75 <0.001 Change of health status 59.76 26.96 61.66 20.90 0.552 Parental involvement: 27.26 29.56 79.58 21.13 <0.001 emotional dimension Parental involvement: time 60.48 30.77 68.09 12.61 <0.001 management dimension Family activity 70.36 26.47 85.70 18.59 <0.001 Family cohesion 51.90 17.91 59.56 20.07 0.004 Physical health 49.24 28.11 79.69 13.18 <0.001 Psychosocial health 59.39 25.34 74.37 12.23 <0.001 CHQ-PF28 dimensions Cohen's d value Physical fitness -2.134 Emotional limitations in -1.159 performing social roles Physical limitations in -0.851 performing social roles Feeling pain -0.591 Behaviour -0.634 Mental health 0.149 Self-esteem (overall -0.457 satisfaction) General health perception -1.774 Change of health status -0.079 Parental involvement: -2.064 emotional dimension Parental involvement: time -0.351 management dimension Family activity -0.681 Family cohesion -0.403 Physical health -1.475 Psychosocial health -0.797 Table 3. The average indices of the quality of life of children suffering from motor disabilities in comparison to the control group CHQ-PF28 dimension Group of children suffering from motor disabilities Girls Boys P Mean/SD Mean/SD value Physical fitness 30.50/30.07 41.95/35.57 0.082 Emotional limitations in 73.76/32.55 64.37/37.91 0.182 performing social roles Physical limitations in 78.01/29.71 68.39/35.55 0.141 performing social roles Feeling pain 63.83/28.48 67.93/27.51 0.456 Behavior 61.76/18.69 50.58/18.97 0.003 Mental health 70.92/19.57 75.00/19.43 0.289 Self-esteem (overall 71.63/17.08 70.98/16.90 0.845 satisfaction) General health perception 31.49/13.03 32.54/14.12 0.695 Change of health status 65.96/24.69 54.74/27.88 0.033 Parental involvement: 27.93/29.97 26.72/29.47 0.837 emotional dimension Parental involvement: time 65.96/30.69 56.03/30.38 0.101 management dimension Family activity 73.40/22.36 67.69/29.35 0.291 Family cohesion 53.72/18.04 50.43/17.83 0.352 Physical health 49.62/6.88 48.93/7.89 0.800 Psychosocial health 61.99/7.01 57.28/8.33 0.054 CHQ-PF28 dimension Control group Girls Boys P Mean/SD Mean/SD value Physical fitness 91.16/19.29 93.03/16.87 0.038 Emotional limitations in 69.93/13.21 96.54/12.51 0.538 performing social roles Physical limitations in 93.94/18.06 94.33/16.05 0.646 performing social roles Feeling pain 77.51/19.38 82.42/17.52 <0.001 Behavior 68.80/15.72 65.15/17.50 <0.001 Mental health 69.85/15.07 71.43/15.09 0.033 Self-esteem (overall 79.50/13.33 76.75/13.39 <0.001 satisfaction) General health perception 62.15/19.56 61.06/19.96 0.274 Change of health status 61.58/21.69 61.74/20.01 0.870 Parental involvement: 79.95/21.20 79.18/21.06 0.458 emotional dimension Parental involvement: time 68.41/12.59 67.72/12.65 0.268 management dimension Family activity 85.78/18.88 85.60/18.29 0.843 Family cohesion 60.24/19.16 58.81/21.01 0.150 Physical health 79.18/13.61 80.27/12.65 0.103 Psychosocial health 75.19/11.86 73.49/12.57 0.006 Table 4. The average indices of the quality of life of children suffering from motor disabilities dependent on residence CHQ-PF28 dimension Group of children suffering from motor disabilities City Village P value Mean/SD Mean/SD Physical fitness 40.30/33.01 32.37/34.09 0.231 Emotional limitations in performing social roles 70.06/35.93 66.67/35.83 0.632 Physical limitations in performing social roles 72.32/34.55 73.19/31.91 0.895 Feeling pain 66.44/27.90 65.65/28.18 0.887 Behavior 53.86/19.61 57.80/19.50 0.308 Mental health 70.90/20.08 76.09/18.56 0.178 Self-esteem (overall satisfaction) 70.76/18.98 71.92/13.99 0.730 General health perception 30.87/13.48 33.61/13.72 0.307 Change of health status 61.44/26.80 97.61/27.32 0.473 Parental involvement: emotional dimension 24.58/29.17 30.71/30.01 0.294 Parental involvement: time management dimension 62.71/31.92 57.61/29.34 0.402 Family activity 69.49/26.70 71.47/26.44 0.706 Family cohesion 51.69/19.62 51.17/15.66 0.893 Physical health 49.54/7.68 48.86/7.24 0.803 Psychosocial health 58.81/7.33 60.13/8.40 0.590
|Printer friendly Cite/link Email Feedback|
|Author:||Wojtkowski, J.; Sienkiewicz, D.; Okurowska-Zawada, B.; Paszko-Patej, G.; Konopka, A.; Okulczyk, K.;|
|Publication:||Progress in Health Sciences|
|Date:||Dec 1, 2017|
|Previous Article:||Evaluation of the possibility of using Anderson and Dedrick's Trust in Physician Scale in Belarusian conditions.|
|Next Article:||Mental health and coping strategies among nursing staff in public health services.|