Influence of accessibility of services on Quality of Life of school children with Cerebral Palsy in Latvia

The aim of the study was to investigate the influence of accessibility of services and health related factors on Quality of Life (QoL) of school children with Cerebral Palsy (CP) in Latvia. 80 children 47 boys and 33 girls with CP and their parents from all regions of Latvia took part in the study. Mean age of participants was 11,7 (SD± 3,5) years. 50 children without diagnosed chronic diseases formed the control group. Validated evaluation tools were used in the study (KIDSCREEN-52, GMFCSE&R). The results show lower QoL in children with CP in comparison with their healthy peers and European children. QoL is influenced by the level of gross motor functions, lack of coordination of services, lack of rehabilitation infrastructure and presence of environmental barriers in Latvia.

The common challenge faced by researchers in the field of CP is inability of many children to communicate themselves thus, the need to rely on the information from the caregiver or parents (Lim, Wong, 2009).
The disproportion between the accessibility of services due to the current socioeconomic situation and the legislation in Latvia was the reason to study the real needs of the children with CP and their families.
Our goals were: to analyze QoL of children with CP, to compare QoL between children with CP and their healthy peers, to assess the level of agreement concerning QoL between children with CP and their parents, to analyze QoL of children with CP in relation with accessibility of rehabilitation and social services.

Materials and methods
This was a prospective, descriptive study of children with CP of Latvia.The total number of participants in this study was 210.It represents 80 children with CP -47 (58,8%) boys and 33 (41,3%) girls, age 8-18, mean age of participants was 11,7 (SD± 3,5) years.80 parents of those children also took part in the study.50 children without diagnosed chronic diseases formed the control group.
The data used in this investigation were collected in all regions of Latvia by the multidisciplinary team of the Rehabilitation Center "Mes esam lidzas".
Clinical presentations of CP were described as in SCPE Reference and Training Manual (Paneth, 2006).
This classification is made on the basis of the predominant neurological findings as spastic CP -bilateral spastic, unilateral spastic, dyskinetic CP -dystonic, choreo-athetotic and ataxic CP.Classification tree for CP subtypes, CP inclusion and exclusion criteria were taken into account.
As an indicator of gross motor function level the Gross Motor Function Classification System Expanded and Revised (GMFCS-E&R) (Palisano et al., 2007) was used.It classifies a person's ability to self initiate movements related to sitting and walking.Typical performances rather than maximal performance were rated using a five level scale.The GMFCS-E&R has evidence of reliability and validity.
We used Bimanual Fine Motor Function (Beckung, Hagberg, 2002) -an assessment which takes into account symmetrical or asymmetrical involvement of the upper limbs for hand function evaluation.
Self-reported Health related Quality of Life (HRQoL) was assessed with KIDSCREEN-52 (Ravens-Sieberer et al., 2005) a modern instrument with excellent psychometric properties, which uses questions derived from focus-group work with children across Europe to assess the QoL of healthy children and young people.The KIDSCREEN-52 instrument contains the following dimensions-physical well-being, psychological well-being, moods and emotions, self perseption, autonomy, parent relation and home life, peers and social support, school environment, bullying and financial resources.
For children with CP it was used in the Study of Participation of Children with Cerebral Palsy Living in Europe (SPARCLE) (Colver, SPARCLE group, 2006).
A Survey for Accessibility of Services (SAS) was used to describe the current situation of accessibility of services in families with CP children.
Child/family questionnaire was developed by the research team to obtain information on the child and family.Demographic questions were indicators of child's age, sex and domestic situation.Ethics approval was received from the State Medical Ethics committee.
We trained the research associates to use the above mentioned evaluation instruments.Children and families were therefore visited by researchers competent both to administer questionnaires to parents, caregivers and to engage children for completion of their questionnaires.The visits took place in the child's education facility and lasted about 90 minutes.Children with communication difficulties in addition to their CP were included by ensuring assistance from a parent or teacher.Children with learning difficulties were not able to report their QoL, in this case the reports of parents or caregivers were used.
We used software SPSS 18,0 for the statistical analysis.

Results
43 school children with CP could self report on their OoL, in 7 cases when the child was intellectually handicaped only the parents' questionnaire was filled.Before the statistical data analysis Cronbach's alpha test was used to measure the internal consistency of data.Its value for the CP group was 0,877, for the parents -0,892 and the control group -0,920.These values indicate good consistency of 52 questionaire items.
All types of CP were represented in our study, the distribution of subtypes were close to European data from SCPE study (Table 1).
Table 1 describes also the severity of impairment of gross motor function (GMFCS E&R).The 5 th level of GMFCS E&R (children need total assistance, independent movements are not possible) was represented only by 3 school children (3.8%).
Figure 1 reflects the overall QoL research results for children with CP.They show lower scores in all dimensions when compared with children from the European QoL study and in 9 scores when compared with healthy peers from Latvia.We found reliability of statistical data between the dimensions of physical well-being and psychological well-being (Spearman's rank correlation coefficient r = 0, 54), physical well-being and peers, social support r = −0, 58, psychological well-being and moods, emotions r = −0, 50, psychological well-being and autonomy r = 0, 46, psychological well-being and parent relation, home life r = 0, 48, parent relations, home life and peers and social support r = 0, 45.
Children reported higher QoL than their parents.Results show that level of agreement differ between children and parents in the dimensions of physical well-being (t = 4.644), psychological well-being (t = 3, 418), social support/participation (t = 1, 904).
Evaluating additional factors as place of residence (Riga and regions of Latvia) and family life (full or single parent family) we found statistical reliability between the place of residence and the dimension of financial resources (r = −0, 370; p = 0, 008), place of residence and the dimension of peers and social support (r = 0, 310; p = 0, 03).These relationships reflect higher QoL in the dimension of financial resources for children who live in Riga.Children from Riga had higher scores in the dimensions of psychological well-being and school environment, however it is not statistically relieable -p > 0, 05.
Children who live in families with both parents reflect higher QoL in all dimensions except in the dimension of moods and emotions and social acceptance.Statistical reliability can be seen between the family situation and dimension of psychological well-being (r = −0, 410; p = 0, 003).56 parents (70% out of 80 persons involved in the research) responded to the part of the questionnaire about rehabilitation services and their availability.In the majority of cases parents acknowledged that their children receive appropriate (17.9%) or partially appropriate (62.5%) rehabilitation services.14.3% of parents thought that their children receive improper, but 5.3% -do not receive rehabilitation at all.
More than a half (62.5%) of respondents living in regions noted that rehabilitation services are not available in their community.However, it must be added that the situation in Riga is just a little better (Figure 2).
Parents named as most efficient and necessary services the following: physiotherapy -42, ride therapy -21 times, massage and swimming -29 times, occupational therapy -18, speech therapy -15 and psychologist's help in 9 cases.

Discussion
Children with CP often have impairments of learning, hearing, vision, communication and epilepsy in addition to their motor ones and so are representatives of the wider population of disabled children (Colver, SPARCLE group, 2006).
Our results show that abnormal vision had 61.3%, hearing impairment -15.0%, epilepsy -31.3%, intellectual disability and learning disorders -25.1%.Only 22.5% of children with CP did not have any associated pathology, 48.8% had one, 27.6% -two, but 1.3% even three.Our study showed lower scores in the dimensions of physical well-being and finances for the CP children with associated pathologies.
When planning clinical services, this syndromic approach is valuable as the differing syndromes will require different interventions to manage the condition, although curing the primary cause is not possible (Colver, SPARCLE group, 2006).
Canadian CP research group has found that participation of children with CP differs based on gross motor function.Children with higher physical ability had fewer activity limitations and participation restrictions than those with lower physical ability (Palisano et al., 2011).
Participation directly correlates with QoL.Our study reflects the influence of gross motor function level (GMFCS E&R) on dimensions of physical weel-being -Pearson correlation coefficient r = −0, 51; p = 0, as well as gross motor function and social acceptance r = 0, 39; p = 0, 005.
Larger populations of disabled children in Latvia need to be studied quantitatively to determine how and why quality of life varies between children with comparable severity of impairment.
Monitoring the rate of the condition in the population and thus providing data for planning and organization of health, social and educational services for young people with Cerebral Palsy is of vital importance.
The study was initiated and funded by the Latvia Children's Fund.

%Figure 2 .
Figure 2. Availability of rehabilitation services in places of residence.

Table 1 .
Included CP children, impairment and socio-economic characteristics.