This article was downloaded by: [RMIT University] On: 19 August 2015, At: 18:44 Publisher: Taylor & Francis Informa Ltd Registered in England and Wales Registered Number: 1072954 Registered office: 5 Howick Place, London, SW1P 1WG

Disability and Rehabilitation Publication details, including instructions for authors and subscription information: http://www.tandfonline.com/loi/idre20

Quality of life of Finnish children with cerebral palsy a

a

b

Sanna Böling , Tarja Varho , Tuula Kiviranta & Leena Haataja

c

a

Neuropaediatric Unit of Turku City Welfare Division, Turku, Finland,

b

Ruskeasuo School, Centre for Learning and Training, Helsinki, Finland, and

c

Department of Paediatric Neurology, Turku University Hospital for Children and Adolescents and Turku University, Turku, Finland Published online: 01 Jul 2015.

Click for updates To cite this article: Sanna Böling, Tarja Varho, Tuula Kiviranta & Leena Haataja (2015): Quality of life of Finnish children with cerebral palsy, Disability and Rehabilitation To link to this article: http://dx.doi.org/10.3109/09638288.2015.1061607

PLEASE SCROLL DOWN FOR ARTICLE Taylor & Francis makes every effort to ensure the accuracy of all the information (the “Content”) contained in the publications on our platform. However, Taylor & Francis, our agents, and our licensors make no representations or warranties whatsoever as to the accuracy, completeness, or suitability for any purpose of the Content. Any opinions and views expressed in this publication are the opinions and views of the authors, and are not the views of or endorsed by Taylor & Francis. The accuracy of the Content should not be relied upon and should be independently verified with primary sources of information. Taylor and Francis shall not be liable for any losses, actions, claims, proceedings, demands, costs, expenses, damages, and other liabilities whatsoever or howsoever caused arising directly or indirectly in connection with, in relation to or arising out of the use of the Content. This article may be used for research, teaching, and private study purposes. Any substantial or systematic reproduction, redistribution, reselling, loan, sub-licensing, systematic supply, or distribution in any form to anyone is expressly forbidden. Terms & Conditions of access and use can be found at http:// www.tandfonline.com/page/terms-and-conditions

http://informahealthcare.com/dre ISSN 0963-8288 print/ISSN 1464-5165 online Disabil Rehabil, Early Online: 1–6 ! 2015 Informa UK Ltd. DOI: 10.3109/09638288.2015.1061607

RESEARCH PAPER

Quality of life of Finnish children with cerebral palsy Sanna Bo¨ling1, Tarja Varho1, Tuula Kiviranta2, and Leena Haataja3 1

Neuropaediatric Unit of Turku City Welfare Division, Turku, Finland, 2Ruskeasuo School, Centre for Learning and Training, Helsinki, Finland, and Department of Paediatric Neurology, Turku University Hospital for Children and Adolescents and Turku University, Turku, Finland

Downloaded by [RMIT University] at 18:44 19 August 2015

3

Abstract

Keywords

Purpose: The aim of this study was to examine the quality of life (QOL) of Finnish children with cerebral palsy (CP) in different parts of Finland from the children’s and caregivers’ perspectives. The acceptability of the Finnish version of the CP QOL-Child questionnaire for clinical use is also evaluated. Method: This study was conducted in 2010–2013 as a part of the national CP-project. It is based on validated CP QOL-Child questionnaires. Children between 9 and 12 years were asked to fill in the child-self-report version. Caregivers who had a 4- to 12-year-old child with CP filled in parent-proxy reports. Results: Responses were obtained from 63 children and 161 caregivers. The response rates were 63 and 60%, respectively. Overall QOL was reported to be fairly good with no significant regional differences within Finland. Children reported significantly higher QOL in all QOL-domains except ‘‘social wellbeing and acceptance’’ than their caregivers did. The results showed acceptable levels of internal consistency of the Finnish version of the CP QOL-Child. Conclusions: QOL of children with CP is quite good in Finland. However, barriers to participation and the impact of disability and pain impair QOL. The Finnish version of the CP QOL-Child questionnaire is an appropriate clinical tool to assess QOL.

Cerebral palsy, children, CPQOL, Finland, quality of life History Received 10 November 2014 Revised 2 June 2015 Accepted 9 June 2015 Published online 29 June 2015

ä Implications for Rehabilitation    

The used questionnaire provides an effective tool to identify areas for targeting support actions and to set goals for rehabilitation plans. The study brings forward the voices of children. It was found that pain has a great role in QOL, which should be taken into account when making rehabilitation plans. The participation of children with CP should be strengthened in every possible ways.

Introduction Cerebral palsy (CP) is the most common cause of physical disability in children [1]. CP may affect an individual’s everyday life and it may have significant impact on quality of life (QOL). The concept of QOL is difficult to grasp due to the widely varying ways in which the acronym ‘‘QOL’’ is defined and used [2]. The WHO defines QOL as an individual’s perception of their position in life in the context of the culture and value systems in which they live, and in relation to their goals, expectations, standards and concerns [3]. QOL may be defined as a multidimensional construct including several domains, often it is identified as material conditions, physical status and functional abilities, social interactions and emotional well-being [4]. QOL can be defined as the individual’s personal perspective of overall wellbeing and contentment in life, which includes both psychosocial and physical or health-related domains [5]. The QOL of children who live with a neurological condition can be affected at different levels, including physical, psychological and psychosocial levels [6]. There are many factors influencing the QOL of both children Address for correspondence: Sanna Bo¨ling, Neuropediatric Unit of Turku City Welfare Division, Turku, Finland. E-mail: [email protected]

with CP and their families, including the child’s level of disability, environmental and social influences, stressors and level of support [5]. QOL is an important outcome of health interventions. Identifying the factors that are associated with better or poorer QOL is important because it can be used to guide the choice of interventions and allocation of resources [7]. Quality of life (QOL) can be assessed by a generic or condition specific or health related measure. Which type of QOL instrument should be used for different purposes has been widely debated [2,8]. Generic measures can be used in the whole population, and therefore have special merit in situations where comparisons between different groups are required. Since generic measures can be used with healthy children, these measures have the advantage of being based on large samples, and population norms are often available, but generic measures often lack sensitivity. Condition or disease specific measures can be much more sensitive to the implications of different treatments and are probably more appropriate for evaluations of interventions [9]. The Cerebral Palsy Quality of Life Questionnaire for Children (CP QOL-Child) is an international CP-specific instrument based on the International Classification of Functioning, Disability and Health (ICF) framework. It was developed by an international multidisciplinary team of clinical and child health researchers,

2

S. Bo¨ling et al.

in collaboration with parents, and children with cerebral palsy [10]. It has been previously used, e.g. by Shelly et al. [11] and Bo¨ling et al. [12], who reported that children with CP may have a high psychosocial QOL score even if they have limited physical functioning. This study is part of a nationwide CP-research project which aims to find reliable, valid and clinically feasible sets of outcome measures for children with CP. The aim of this study is to examine the QOL of Finnish children with cerebral palsy in different regions of Finland from the children’s and caregivers’ perspectives and to identify the possible factors contributing to the perception of QOL. In addition, the acceptability of the Finnish version of the CP QOL-Child questionnaire for clinical use is also evaluated.

Methods

Downloaded by [RMIT University] at 18:44 19 August 2015

Participants A total of 161 families who had a 4- to 12-year-old child with CP participated in this study. The CP QOL-Child questionnaire (caregiver-proxy version) was sent to caregivers by mail or given to them at clinical check-ups. Children between 9 and 12 years were asked to fill in a separate questionnaire themselves (CP QOL-Child; child self-report). Caregivers were asked to consider the child’s ability to fill in the questionnaire, which resulted in 63 child self-reports. The approximate total national populations are 480 and 1080 for the age spans 9–12 and 4–12, respectively. This survey was conducted in two parts. The first part of the research project was carried out during a 3-month period from November 2010 to February 2011 in the Hospital District of Southwest Finland (Neuropediatric Units of Turku University Hospital and Turku city) and the Helsinki and Uusimaa Hospital District (Neuropediatric Unit of Helsinki University Hospital) [12]. The second part of the study was conducted from November 2011 to December 2013 in Oulu (Neuropediatric Unit of Oulu University Hospital) and Kuopio (Neuropediatric Unit of Kuopio University Hospital), and also at three national Learning and Consulting Centres in Oulu (Tervava¨yla¨ School), in Kuopio (Ma¨ntykangas School) and in Helsinki (Ruskeasuo School) in connection with clinical check-ups. Questionnaires The CP QOL-Child questionnaires assess the QOL of children aged 4–12 years. There are two versions, a primary caregiver/ parent report for children aged 4–12 years; and a self-report for children aged 9–12 years [10]. The caregiver-proxy version assesses seven domains of QOL including ‘‘social wellbeing and acceptance’’, ‘‘functioning’’, ‘‘participation and physical health’’, ‘‘emotional wellbeing and self-esteem’’, ‘‘access to services’’, ‘‘pain and impact of disability’’ and ‘‘family health’’. The child self-report version assesses the same domains except ‘‘access to services’’ and ‘‘family health’’. The primary caregiver-proxy form comprises 66 items and the child self-report form comprises 52 items. Most of the items begin with the question: ‘‘How do you think your child feels about . . .?’’ with a nine-point rating scale, where 1 ¼ very unhappy, 3 ¼ unhappy, 5 ¼ neither happy nor unhappy, 7 ¼ happy, and 9 ¼ very happy. The rest of the items begin with a question like ‘‘How does your child feel about the amount of pain that they have?’’, with a rating scale from 1 ¼ not upset at all to 9 ¼ very upset. The questionnaire was translated into Finnish from the original English questionnaire according to the instructions given in the manual [10], and with the written consent of the authors. The layout was set according to the original questionnaire by SB [12].

Disabil Rehabil, Early Online: 1–6

Background factors As a part of the ongoing multi-professional national research project all the participating children had been classified according to the Gross Motor Function Classification System (GMFCS [13]), Manual Ability Classification System (MACS [14]) and Communication Function Classification System (CFCS [15]). In the second part of the study, the children were classified according to the ICD-10’s four categorical cognition levels describing cognitive performance (level 1 ¼ no developmental disorders, 2 ¼ specific developmental disorders in speech and language or scholastic skills, 3 ¼ mixed specific developmental disorders, 4 ¼ intellectual disability, ID). In addition, CP type according to the ICD-10, age and gender were also included as background factors in this study. Statistical analysis Statistical analyses were conducted with the SPSS (Statistical Package for Social Sciences Program) version 21 (SPSS Inc., Chicago, IL). Reliability of the sum variables was examined using the Cronbach’s a test, with the lowest acceptable value of 0.6. All sum variables passed this test. For the caregiver-proxy report, reliability a ranged from 0.69 to 0.90, and for the children-proxy report reliability a ranged from 0.62 to 0.83. Mean values and standard deviations were used as main indicators. The scoring of the QOL questionnaires was performed according to the CP QOL manual [10]. The raw score was converted into a 0–100 scale. The responses were classified into seven sum variables: ‘‘social wellbeing and acceptance’’, ‘‘functioning’’, ‘‘participation and physical health’’, ‘‘emotional wellbeing and self-esteem’’, ‘‘pain and impact of disability’’, ‘‘access to services’’ and ‘‘family health’’, all measuring different aspects of QOL. An overall variable denoted ‘‘quality of life’’ and the sum of all variables was also considered. Cerebral palsy (CP) type according to the ICD-10, gender, GMFCS level, MACS level, CFCS level and cognition level were considered as background factors in the data analysis. The responses were further divided into two groups using cognitive level as dividing factor, with 4 (¼ ID) as one group and the rest (1–3) in the other. The effects of the chosen background factors on different QOL domains were examined by analysis of variance, with the significance level p50.05. And finally, the responses of children and caregivers were compared using a paired samples t-test and Pearson‘s correlation coefficient test. Ethical approval The national research project protocol was approved by the Ethics Review Committees of the Hospital District of Southwest Finland and the Hospital District of Helsinki and Uusimaa in 2008. All the caregivers gave written consent after oral and written information.

Results Demographic characteristics Sixty-three (n ¼ 63) children aged 9–12 years (mean 10.4 years), completed the child self-report. One hundred and sixty-one (n ¼ 161) caregivers of children aged 4–12 years with CP (mean 8.0 years), completed the caregiver-proxy report. The response rates were 63 and 60%, respectively. All paired evaluations were based upon child-caregiver pairs (n ¼ 55). The characteristics of the study population are shown in Table 1. The children were divided into two groups according to their age: 4–8 and 9–12 years.

QOL of children with CP

DOI: 10.3109/09638288.2015.1061607

3

Table 1. Characteristics of the study population.

Background factor

Value

Gender

Male Female 0 Spastic quadriplegia 1 Spastic diplegia 2 Spastic hemiplegia 3 Dyskinetic CP 4 Atactic CP 5 Mixed CP 6 Other CP I II III IV V I II III IV V I II III IV V 1 2 3 4

Diagnosis (n ¼ 63 for children, n ¼ 156 for caregivers)

GMFCSa (n ¼ 62 for children, n ¼ 154 for caregivers)

Downloaded by [RMIT University] at 18:44 19 August 2015

MACSb (n ¼ 59 for children, n ¼ 144 for caregivers)

CFCSc (n ¼ 60 for children, n ¼ 150 for caregivers)

Cognitiond (n ¼ 31 for children, n ¼ 74 for caregivers)

Child self-report (n ¼ 63)

Caregivers proxy-report (n ¼ 161)

62% 38% 2% 40% 38% 14% 0% 5% 2% 45% 23% 11% 19% 2% 37% 31% 15% 9% 9% 77% 15% 8% 0% 0% 23% 45% 7% 26%

58% 42% 5% 39% 34% 13% 1% 6% 3% 40% 27% 12% 17% 3% 37% 26% 21% 12% 4% 58% 16% 11% 14% 1% 22% 26% 15% 38%

a

Gross Motor function Classification System. Manual Ability Classification System. c Communication Function Classification System. d Cognition function levels. b

Child self-report Out of the five considered domains of QOL, ‘‘social wellbeing and acceptance’’ (mean 83.5, SD 11.1) and ‘‘emotional wellbeing and self-esteem’’ (mean 85.0, SD 12.1) were given the highest scores by children. The two domains that were rated lowest were ‘‘participation and physical health’’ (mean 77.9, SD 14.5) and ‘‘pain and impact of disability’’ (mean 75.0, SD 17.0). Table 2 shows the factors which have a statistically significant impact on QOL. Overall QOL mean was 80.6, with SD 10.4. The type of CP (p ¼ 0.013), MACS (p ¼ 0.003), GMFCS (p ¼ 0.022) and CFCS (p ¼ 0.031) levels associated significantly with QOL. Lower functioning levels correlated with lower QOL. The MACS level (p50.001) was also a significant background factor in the sub-domain ‘‘functioning’’ together with the CFCS level (p ¼ 0.002) and the type of CP (p ¼ 0.001). The CP type (p ¼ 0.003), MACS (p ¼ 0.037) and CFCS (p ¼ 0.004) levels were significant background factors in the sub-domain ‘‘participation and physical health’’. The GMFCS level (p ¼ 0.001) was a significant background factor in the domain ‘‘social wellbeing and acceptance’’. None of the other background factors (i.e. gender, age, cognitive performance and ID) were significant in the analysis. Caregiver-proxy report Caregivers gave the highest scores for the domains ‘‘social wellbeing and acceptance’’ (mean 81.9, SD 10.8), and ‘‘emotional wellbeing and self-esteem’’ (mean 81.2, SD 11.6). The other three main domains, ‘‘functioning’’ (mean 71.0, SD 13.9), ‘‘participation and physical health’’ (mean 65.2, SD 15.6) and

‘‘pain and impact of disability’’ (mean 70.6, SD 17.2) were all scored lower by caregivers. The overall QOL mean was 73.5, with SD 10.7. Table 3 shows the factors which had a statistically significant impact on QOL. In the caregivers’ evaluation, CFCS (p ¼ 0.017), MACS (p ¼ 0.002) and GMFCS (p50.001) levels were significantly associated with perceived QOL. All the functioning levels, GMFCS (p50.001), MACS (p50.001) and CFCS (p50.001) were also associated with the domain ‘‘functioning’’ together with the CP type (p50.001). The CP type (p ¼ 0.048), MACS level (p ¼ 0.001), GMFCS level (p50.001), CFCS level (p ¼ 0.001) and cognition level (p ¼ 0.016) were significant background factors in the domain ‘‘participation and physical health’’. In addition, when comparing children with ID (4) to the other groups (1–3) the difference was significant (p ¼ 0.023) in the domain ‘‘participation and physical health’’. Other background factors (i.e. gender and age) were not significant in the analysis. Regional differences Regional differences were also considered, as the participating children were quite clearly either from the southern parts of Finland or from the northern and eastern parts. The differences in the responses obtained from the children were not statistically significant. When comparing the responses of the caregivers, some trends were observed, and in all cases the caregivers from the northern and eastern parts of Finland reported a higher QOL. In one of the sub-domains, ‘‘social wellbeing and acceptance’’ (p ¼ 0.037), the difference was statistically significant.

4

S. Bo¨ling et al.

Disabil Rehabil, Early Online: 1–6

Table 2. The factors with statistically significant impact on QOL domains in the child self-reports (n ¼ 63). Social wellbeing and acceptance

Downloaded by [RMIT University] at 18:44 19 August 2015

Mean Diagnosis 0 Spastic quadri-plegia (n ¼ 1) 1 Spastic diplegia (n ¼ 25) 2 Spastic hemi-plegia (n ¼ 24) 3 Dyskinetic (n ¼ 9) 5 Mixed (n ¼ 3) 8 Other (n ¼ 1) GMFCS level I (n ¼ 28) II (n ¼ 14) III (n ¼ 7) IV (n ¼ 12) V (n ¼ 1) MACS level I (n ¼ 22) II (n ¼ 18) III (n ¼ 9) IV (n ¼ 5) V (n ¼ 5) CFCS 1 (n ¼ 46) 2 (n ¼ 9) 3 (n ¼ 5)

Std.

Participation and physical health

Functioning p

Mean

Std.

89.4 83.2 85.4 70.5 61.2 54.8

– 11.2 12.1 12.7 14.7 –

85.1 85.7 76.9 70.1 66.3

11.0 9.2 15.6 16.6 –

87.6 81.7 79.9 66.8 61.9

7.5 14.3 12.1 13.2 13.2

83.7 76.9 62.5

12.3 9.0 19.9

p

Mean

Std.

78.8 76.9 83.9 75.0 54.6 48.6

– 12.9 12.4 12.4 21.3 –

0.001

0.001 84.9 87.7 79.2 82.6 43.8

Quality of life p

Mean

Std.

87.0 80.7 84.6 75.1 68.5 62.3

– 8.8 10.0 10.7 9.2 –

83.5 83.1 78.8 75.1 59.9

8.7 7.0 13.6 11.3 –

85.1 81.1 80.8 72.4 67.9

6.9 10.6 10.7 10.6 9.7

82.1 80.7 69.4

10.5 4.5 10.6

0.003

0.013

0.006

8.9 7.6 14.6 10.2 –

p

0.022

50.001

0.037 83.3 78.7 78.5 67.7 65.5

10.5 15.1 13.4 15.6 14.8

80.4 79.8 59.3

13.3 7.1 16.7

0.002

0.003

0.004

0.031

Table 3. The factors with statistically significant impact on QOL domains in the caregiver proxy-reports (n ¼ 161). Participation and physical health

Functioning

Diagnosis 0 Spastic quadriplegia (n ¼ 7) 1 Spastic diplegia (n ¼ 60) 2 Spastic hemiplegia (n ¼ 52) 3 Dyskinetic (n ¼ 20) 4 Atactic (n ¼ 2) 5 Mixed (n ¼ 9) 6 Unidentified (n ¼ 3) 8 Other (n ¼ 2) GMFCS level I (n ¼ 61) II (n ¼ 42) III (n ¼ 19) IV (n ¼ 26) V (n ¼ 5) MACS level I (n ¼ 53) II (n ¼ 37) III (n ¼ 30) IV (n ¼ 17) V (n ¼ 6) CFCS level I (n ¼ 86) II (n ¼ 24) III (n ¼ 17) IV (n ¼ 21) V (n ¼ 1) Cognition level 1 (n ¼ 15) 2 (n ¼ 19) 3 (n ¼ 11) 4 (n ¼ 28)

Mean

Std.

69.7 74.8 73.6 59.2 76.0 60.0 61.3 68.3

18.6 12.9 11.1 14.8 2.7 16.9 10.7 6.7

78.1 73.4 64.1 58.9 48.1

10.0 11.9 13.4 12.1 11.5

77.9 74.9 65.7 56.5 48.4

10.9 12.7 8.1 14.2 12.0

75.3 67.9 64.3 60.0 32.7

12.5 13.2 11.6 12.5 –

p

Mean

Std.

61.6 64.4 70.1 59.9 78.8 57.7 50.4 62.8

15.8 17.1 13.6 16.2 0.0 13.7 10.5 10.2

73.0 63.9 58.2 54.8 55.0

13.3 14.0 17.6 13.1 15.4

68.3 69.7 61.4 53.6 54.6 68.7 63.3 62.1 54.8 33.8

15.5 17.9 11.0 16.7 14.2 . 15.9 16.1 11.0 13.3 –

74.5 64.4 62.9 59.1

14.1 18.4 10.7 13.1

50.001

Quality of life p

Mean

Std.

77.3 74.2 69.3 66.7 67.3

9.5 10.6 12.4 9.1 7.9

75.8 75.2 71.7 65.9 63.8

9.9 13.0 7.5 12.1 7.3

75.1 72.3 71.6 67.8 53.3

11.3 9.0 7.2 11.0 –

p

0.048

50.001

50.001

50.001

50.001

0.001

50.001

0.002

0.001

0.016

0.017

QOL of children with CP

DOI: 10.3109/09638288.2015.1061607

5

Table 4. Comparison between the child self-report and caregiver proxy-report (n ¼ 54–55). Child self-report

Caregiver proxy report

Domain

Mean

Std dev

Mean

Std dev

p from t-test

Correlation

p for correlation

Social wellbeing and acceptance Functioning Participation and physical health Emotional wellbeing and self esteem Pain and impact of disability Quality of life

84.7 82.1 79.2 84.8 75.6 81.6

8.9 12.4 12.8 11.7 17.6 9.2

81.9 73.1 65.9 78.2 64.8 72.7

11.5 15.3 16.1 14.1 16.5 11.6

0.102 50.001 50.001 0.003 50.001 50.001

0.27 0.55 0.47 0.25 0.29 0.45

0.049 50.001 50.001 0.065 0.034 0.001

Downloaded by [RMIT University] at 18:44 19 August 2015

Comparison of child self-report and caregiver-proxy report In 55 cases, reports from both the child and the caregiver were obtained. The mean values of the domain scores are given in Table 4 for comparison. Caregivers estimated QOL lower in all domains compared to the children’s own perception, and the difference was statistically significant for all domains except ‘‘social wellbeing and acceptance’’. On the other hand, the correlation between the ratings was significant in all areas. It can, however, be noted that the correlation was significantly smaller for ‘‘social wellbeing and acceptance’’, ‘‘participation and physical health’’ and ‘‘pain and impact of disability’’ compared with the other domains.

Discussion This study represents, to the best of our knowledge, the first national survey of QOL of children with CP in Finland. The findings verify our previous pilot study [12], and also introduce regional information as a background factor. The definition of QOL is multifaceted, and measuring QOL is difficult. The choice of the QOL questionnaire was motivated by a recent study [8]. The overall QOL of Finnish children with CP is fairly good, especially in the domains ‘‘social wellbeing and acceptance’’ and ‘‘emotional wellbeing and self-esteem’’, with no systematic differences between different regions in Finland. However, barriers to participation and impact of disability and pain impair QOL. Regarding the clinical applicability and reliability of the Finnish version of the CP QOL-Child, we also showed high internal consistency. Cerebral palsy (CP) may have an impact on the perceived participation and functioning of children [12]. In a study by Vargus-Adams et al. [16], the researchers examined the correlation between subjective wellbeing and GMFCS and MACS levels. Parents and medical professionals had similar perceptions of gross motor function, self-care and QOL for children with CP and these perceptions correlated with standard outcome measures, but often did not agree with the children’s own ratings. Calley et al. [17] measured activity, participation and QOL both in children with CP and a comparable group of typically developing children. According to this study, typically developing children experience a higher QOL in the domains of ‘‘functioning’’ and ‘‘participation and physical health’’ than children with CP [17]. Our results also indicate that CP is perceived to limit participation, one of the main aspects in the ICF framework, despite the generally good overall QOL. In our study, intellectual disability was found to be a significant background factor in the domain ‘‘participation and physical health’’ in the caregivers’ evaluation. Only few surveys have been performed where parents of children with ID evaluate their children’s QOL. Instead, the studies focus mainly on the QOL of the families or caregivers themselves. In a study by Brown et al. [18], the authors suggest that there is a need to both

identify and provide measures of care and support that would enable families to function at an optimum level at home and within their environment in order to experience a QOL similar to that of families without a child with developmental disability. ‘‘Pain and impact of disability’’ was perceived as the least satisfactory domain from the children’s point of view in this study. This result underlines the importance of pain management as an integral part of every clinical evaluation. Ramstad et al. [19] have arrived at the same conclusion in their research. Recurrent musculoskeletal pain is the dominating pain problem for children and adolescents with CP. Monitoring of musculoskeletal pain should be part of medical follow-up across the whole range of motor impairment [19]. In this study, caregivers evaluated the QOL of their children significantly lower in all other domains except ‘‘social wellbeing and acceptance’’ than the children themselves. This probably means that parents overvalue this domain to some extent, while they otherwise show consistent undervaluation. Based on the correlation analysis it can be concluded that the caretakers knew their children quite well, although a few domains, ‘‘social wellbeing and acceptance’’, ‘‘participation and physical health’’ and ‘‘pain and impact of disability’’, seemed to be more difficult for caretakers to evaluate. Even though parents are generally positive, several studies [11,12] have confirmed that children with CP are more resilient and positive about their health-related QOL than their parents think they are [20]. Regional differences were also considered in this study, as the participating children were either from the southern parts of Finland or from the northern and eastern parts. There were no differences in the responses obtained from the children, but the caregivers from the northern and eastern parts of Finland showed a tendency to report a higher QOL. This was an unexpected finding since the National Institute for Health and Welfare, which studies the welfare and health of the Finnish population regularly, has not reported any significant differences in subjective wellbeing in different regions in Finland [21]. A limitation of this study is that children were required to be of a certain age and to have sufficient cognitive ability to complete a questionnaire. Getting forward the voice of the children is a common issue in measuring QOL [22,23]. Severely disabled children cannot respond to such a questionnaire, and some other type of measure (e.g. smileys) should be designed in order to reliably measure their subjective perception of QOL. Another limitation is that not all invited families responded, which might also have skewed the results. In our earlier study, no significant differences were found when comparing background factors of responders and non-responders [12]. It can also be questioned if it is possible to capture the core of QOL with a structured questionnaire. One of the disadvantages is that response options do not allow individual choices which would enhance the reliability and misunderstandings are difficult to control. This national study showed that overall QOL was perceived fairly good in Finnish children with CP irrespective of the

6

S. Bo¨ling et al.

geographical area where they lived. Children with CP and intellectual disability who were capable of filling in the questionnaire perceive their QOL to be as high as their peers without ID. The most significant factors influencing QOL were all the functioning levels and the type of CP. ‘‘Participation and physical health’’, as well as ‘‘pain and impact of disability’’ were perceived as the least satisfactory domains by children and their caregivers. The CP QOL-Child instrument provides an effective tool to identify areas for targeting support actions and to set goals for rehabilitation plans together with the child and caregivers. Further exploration is needed to find out if the perception of QOL changes when children with CP become adolescents.

Declaration of interest The authors report no declarations of interest.

Downloaded by [RMIT University] at 18:44 19 August 2015

References 1. Rosenbaum P, Paneth N, Levinton A, et al. A report: the definition and classification of cerebral palsy. Dev Med Child Neurol 2007;49: 1–44. 2. Burns TM, Graham CD, Rose MR, Simmons Z. Quality of life and measures of quality of life in patients with neuromuscular disorders. Muscle Nerve 2012;46:9–25. 3. WHOQOL. The World Health Organisation quality of life assessment. Assessment Group: development and general psychometric properties. Soc Sci Med 1998;46:1569–85. 4. Schipper H, Clinch JJ, Olweny CLM. Quality of life studies: definitions and conceptual issues. In: Spilker B, ed. Quality of life and pharmacoeconomics in clinical trials. 2nd ed. Philadelphia: Lippincott Raven;1996:11–23. 5. Majnemer A, Shevell M, Law M, et al. Reliability in the ratings of quality of life between parents and their children of school age with cerebral palsy. Qual Life Res 2008;17:1163–71. 6. Voll R. Aspects of the quality of life of chronically ill and handicapped children and adolescents in outpatient and inpatient rehabilitation. Int J Rehabil Res 2001;24:43–9. 7. Shikako T, Shikako-Thomas K, Dahan-Oliel N, et al. Play and be happy? Leisure participation and quality of life in school-aged children with cerebral palsy. Int J Pediatr 2012;2012:387280. 8. Davis E, Shelly AMY, Waters E, Davern M. Measuring the quality of life of children with cerebral palsy: comparing the conceptual differences and psychometric properties of three instruments. Dev Med Child Neurol 2010;52:174–80.

Disabil Rehabil, Early Online: 1–6

9. Eiser C. Children’s quality of life measures. Arch Dis Childh 1997; 77:350–4. 10. Waters E, Davis E, Boyd R, et al. Cerebral Palsy Quality of Life Questionnaire for Children (CP QOL-Child) Manual. Melbourne: Deakin University; 2006. 11. Shelly A, Davis E, Waters E, et al. The relationship between quality of life and functioning for children with cerebral palsy. Dev Med Child Neurol 2008;50:199–203. 12. Bo¨ling S, Varho T, Ma¨enpa¨a¨ H, et al. Measuring quality of life of Finnish children with cerebral palsy. J Pediatr Rehabil Med 2013;6: 121–7. 13. Palisano R, Rosenbaum P, Walter D. Development and reliability of a system to classify gross motor function in children with cerebral palsy. Dev Med Child Neurol 1997;39:214–33. 14. Eliasson AC, Krumlinde-Sundholm L, Ro¨sblad B, et al. The Manual Ability Classification System (MACS) for children with cerebral palsy: scale development and evidence of validity and reliability. Dev Med Child Neurol 2006;48:549–54. 15. Hidecker MJC. Building the evidence for communication interventions. Dev Med Child Neurol 2010;52:316–17. 16. Vargus-Adams JN, Martin LK, Maignan SH, et al. The GMFM, PEDI, and CP-QOL and perspectives on functioning from children with CP, parents and medical professionals. J Pediatr Rehabil Med 2011;4:3–12. 17. Calley A, Williams S, Reid S, et al. A comparison of activity, participation and quality of life in children with and without spastic diplegia cerebral palsy. Disabil Rehabil 2012;34:1306–10. 18. Brown I, Schalock R, Brown RI. Quality of life: its application to persons with intellectual disabilities and their families – introduction and overview. J Policy Pract Intellect Dis 2009;6:2–6. 19. Ramstad K, Jahnsen R, Skjeldal O, Diseth T. Characteristics of recurrent musculoskeletal pain in children with cerebral palsy aged 8 to 18 years. Dev Med Child Neurol 2011;53:1013–18. 20. Colver A. Study protocol: SPARCLE – a multi-centre European study of the relationship of environment to participation and quality of life in children with cerebral palsy. BMC Public Health 2006; 6:105. 21. Kaikkonen R, Murto J, Pentala O, et al. Regional results from health and wellfare research 2010–2014 (in Finnish). Available from: www.thl.fi/ath [last accessed 5 May 2014]. 22. Eiser C, Morse R. Can parents rate their child’s health-related quality of life? Results of a systematic review. Qual Life Res 2001; 10:347–57. 23. Varni JW, Burwinkle TM, Sherman SA, et al. Health-related quality of life of children and adolescents with cerebral palsy: hearing the voices of the children. Dev Med Child Neurol 2005;47:592–7.

Quality of life of Finnish children with cerebral palsy.

The aim of this study was to examine the quality of life (QOL) of Finnish children with cerebral palsy (CP) in different parts of Finland from the chi...
158KB Sizes 0 Downloads 11 Views