Background: Quality of life (QOL) in children with cerebral palsy (CP) needs to be measure by CP-specific questionnaire. CP-QOL questionnaire is being used for this purpose. Objectives: The aim is to determine the QOL in Indian children with CP using CP-QOL questionnaire and to correlate QOL scores with demographic details of the patient. Materials and Methods: Subjects were parents of 50 children (4–12 years) attending child development center of Guru Teg Bahadur Hospital were enrolled. The parent–proxy version of the CP-QOL questionnaire translated into Hindi was administered by one author. Scoring and analysis were performed as per specified method. Cronbach's alpha was calculated for each domain for validation. Effect of clinical and demographic profile on QOL was analyzed. Results: CP-QOL questionnaire was administered to 50 parents of CP children (32 males, 18 females). The overall QOL score of the children studied was computed to be 38.29 ± 5.2. Age and maternal education had a significant bearing on the QOL of the children (P < 0.05). Type of CP, gender, and epilepsy did not affect the QOL significantly (P > 0.05). Good internal consistency and reliability were found in the domains of social well-being and acceptance, functioning, participation, and physical health (Cronbach's alpha >0.7). Access to services, pain, and impact of disability and family health showed a weak correlation with Cronbach's alpha <0.7. Conclusion: QOL in children with CP was compromised. The CP-QOL questionnaire can be used to measure QOL in Indian children with CP.

Keywords:Cerebral palsy, cerebral palsy-quality of life questionaire, quality of life

How to cite this article:Das S, Aggarwal A, Roy S, Kumar P. Quality of life in Indian children with cerebral palsy using cerebral palsy-quality of life questionnaire. J Pediatr Neurosci 2017;12:251-4

Cerebral palsy (CP) is the leading cause of physical disability in children, occurring in 2–2.5/1000 live births. The impact of CP on children and families can be profound. In 1991, the United CP Association adopted the mission statement “to affect positively the quality of life (QOL) of persons with CP.” Although variously defined, QOL is usually described as an overall assessment of well-being across various domains.[1] The major problem with many definitions of QOL and health-related QOL (HRQOL) is that they are often complex and difficult to operationalize.[2] QOL has been defined by the World Health Organization (WHO) as “the individual's perception of their position in life, in the context of culture and value systems in which they live and in relation to their goals, expectations, standards, and concerns” (WHO 1993). Definitions of HRQOL are similarly unclear, such as “rubric, encompassing various aspects of personal experience, including physical and psychological health, cognitive factors, social role performance, and general life satisfaction.”[2] A clearer conceptualization of QOL and HRQOL, developed by Spiker and Reviki,[3] is that HRQOL is a subset of QOL. Questionnaires that have been used to measure the QOL of children with CP include the child health questionnaire (CHQ),[4] the caregiver questionnaire.[5]

The CP-QOL-child is a condition-specific QOL questionnaire designed for children with CP.[6] This questionnaire, consistent with Bjornson and McLaughlin's definition of QOL (2001)[1] is designed to assess well-being rather than ill-being. Two versions of the questionnaire are available: A primary caregiver-proxy report for children aged 4–12 years and a self-report form for children aged 9–12 years. Three features are notable about the design of the questionnaire: (i) it is based on the International Classification of Function, (ii) It has been developed with international expertise; and (iii) it recognizes the importance of obtaining the views of the child and primary caregivers in developing and completing the questionnaire. CPQOL has been correlated with CHQ and KIDSCREEN in Australia.[6] Primary caregiver questionnaire evaluating seven domains appears to have very good reliability and validity.[6]

The questionnaire has not been evaluated in India. Hence, we translated the primary caregiver QOL questionnaire containing 66 items in Hindi and used it to study the QOL in children with CP.

Materials and Methods

This study was carried out in Child Development Clinic of a tertiary care hospital of morth India. Ethical clearance was obtained from the institutional ethical committee. A total of fifty parents of children with CP between the age group of 4–12 years were recruited in the study. Informed consent was obtained from parents of these children.

Clinical and demographic details were recorded, and detailed physical examination was carried out to determine the type of CP. CP-QOL questionnaire was administered to the parent. Patient proxy version (for parents of children age 4–12 years) comprising 66 items[6] was translated into Hindi. It was retranslated in English as per translation instruction for checking the adequate translation. The various domains assessed using this questionnaire were – social well-being and acceptance, functioning, participation and physical health, emotional well-being and self-esteem, access to services, pain and impact of disability, and family health. Scoring of the items involved 2 steps as per the CP-QOL child questionnaire. All the items in various domains have a 1–9 point rating scale where 1 = very unhappy and 9 = very happy. A few items like pain, where this rating is not appropriate, the scale is 1 = not upset, 9 = very upset. All QOL score were converted to a scale from 0 to 100, i.e., 1 = 0, 2 = 12.5, and 3 = 25. The algebraic means of item values are computed for each domain. The questionnaire was scored as per the instructions, and required statistical analysis was carried out.[6]

The data were analyzed using the a standard statistical package. An overall QOL score was computed by adding each subscale score. Cronbach's α was used to determine the interval consistency and reliability of the subscales. The mean QOL scores were compared in children with different age group using the initial group Tukey test.

Results

In this study, we administered CP-QOL questionnaire to parents of 50 children with CP. Among these children, 32 (64%) were male and 18 (36%) were female. In the age group 4–6 years, there were 16 (32%) children, 6–9 year age included 30 (60%) patients, and 4 (8%) children were aged between 9 and 12 years. According to the Gross Motor Function Classification System (GMFCS), majority of children were in level 4 (n = 17, i.e., 34%) and level 5(n = 10, i.e., 20%). Level 1 and 2 comprised of 8 (16%) children in each category, whereas there were 6 (12%) patients with level 3 functioning. Age of the parent was between 25 and 69 years with a mean of 28.1 years.

[Table 1] depicts the overall QOL scores in relation to the demographic parameters. When the QOL was computed with respect to the GMF scores, it was found that it was not varying significantly (P = 0.58) with the level of motor functioning. The overall QOL was computed as 38.29 ± 5.2. The population under study comprised of males (64%) and females (36%) and gender did not affect the QOL significantly (P = 0.304). Furthermore, the presence or absence of epilepsy did not have a bearing on the QOL of these children (P = 0.10). Age of the child significantly affected the QOL (P = 0.018), with a higher QOL score in the 6–9 years age group (39.94 ± 4.83) than 4–6 years (35.45 ± 5.0) and 9–12 years children (37.36 ± 5.30). Type of CP, whether quadriparetic or nonquadriparetic did not affect the QOL significantly (P = 0.17). Maternal education had a significant impact on the QOL of the children in the present study (P = 0.023). The QOL score of children whose mothers were literate was computed to be 36.2 ± 5.47 as against a QOL score of 39.8 ± 5.17 for those with uneducated mothers. Thus, in our study, it was found that the QOL in children with CP varies significantly with the age of the child and maternal education, but it is not affected by the GMF level, gender, epilepsy, and type of CP.

Table 1: Quality of life scores and effect of various factors on quality of life scores

In [Table 2], we have the overall QOL score and Cronbach's alpha of the various subscales is shown. A value of >0.7 for Cronbach's alpha is considered indicative of good internal consistency and reliability. In the domain of social well-being and acceptance (0.718), functioning (0.707), participation and physical health (0.769) the Cronbach's alpha was scored >0.7. Emotional well-being and self-esteem (0.648), access to services (0.445), pain and impact of disability (0.586), and family health (0.445) showed a weak correlation with Cronbach's alpha <0.7 in all these subscales. Thus, these parameters could not be assessed with the CP-QOL questionnaire that we used.

Table 2: Overall quality of life score and Cronbach's alpha of the subscales

The CPQOL scale is a condition specific QOL questionnaire by Bjornson and McLaughlin formulated in the year 2001.[1] The validity of the CP-QOL is supported by the pattern of correlations between the CP-QOL child scales and the CHQ, KIDSCREEN and GMFCS.[6]

CP is a life long disability affecting QOL of parents and children. It is influenced by the quality of care available and understanding of the parents about the disease. The QOL of these children needs to be measured. Hence, we have tried to measure QOL in our children with this questionnaire. The overall QOL in our study was 38.29 ± 5.2.

When overall QOL was assessed with respect to GMF score, QOL did not vary much with GMF score, although the number of children studied were less for this result to be valid. However, a study conducted in Iran examined the association between Gross Motor Function (GMF) and the QOL domains for children with CP using the same questionnaire. They reported an increase in GMF in children with CP has a considerable effect on their QOL.[7] Another study conducted in Nigeria concluded that the severity of disability had a negative impact on HRQOL of children with CP.[8] This difference may be because most of the children in our study had quadriparetic CP and number was small to have an intergroup comparison. A study conducted in the USA explored whether the severity of physical symptoms correlates with psychosocial QOL among pediatric patients with CP and found that the GMFCS level was not significantly associated with psychosocial QOL.[9] Thus, this study had findings corresponding to the present study with regard to the association between QOL and the level of motor disability.

In the present study, QOL was not affected by sex. This finding was in corroboration with that of another study which assessed factors related to psychosocial QOL in children with CP[9] and in a study conducted on Malaysian children with CP.[10] Although a study from India reported the HRQOL of males to be more severely affected than their female counterparts.[11] This difference in findings between these studies may be attributed to the different perception of parents regarding the disability. The presence or absence of epilepsy was not found to affect the QOL significantly in our study. This was contrary to the result of other studies[9],[11] where it was reported that the QOL is negatively affected by the presence of epilepsy. This may be due to the smaller sample size in our study.

In the present study, the QOL was better in children 6–9 years as compared to 4–6 years and 9–12 years of age. Thus, age had a significant impact on the QOL. This could be attributed to lesser acceptance of the condition among the parents when the children are small, whereas there is decreased mobility and access to services once the child gets older. In the study carried out in Nigeria age had a significant effect on HRQOL of children with CP.[8] However, some studies have reported no association between age and QOL in CP.[9],[10] Maternal education had an impact on QOL in our study. QOL was perceived better by educated mothers, education improves understanding of parents, more access to services, and better management.

It is difficult to compare the QOL if a different questionnaire is used, a study on Malaysian children with CP used the lifestyle assessment questionnaire (LAQ) which classified children as having mild, moderate, and severely affected QOL. The QOL was moderate to severely affected in most of the children.[10] Similarly, a study done in India used the LAQ-CP questionnaire and found that HRQOL was moderate to severely affected in two-thirds of children with CP, and their families.[11] A study conducted in Nigeria, HRQOL was assessed using the CHQ Parent Form-28 (CHQ-PF 28). The participants' overall scores and scores in each domain of CHQ-PF 28 were very low.[8] CP-QOL questionnaire has been used in studies of QOL of children with CP in the USA[9] and Iran.[7] In short, whatever the mode of assessing and questionnaire used, it is found that the QOL is affected in children with CP. The degree of affection, in some studies, varies with the level of disability, age, gender, and comorbidities, whereas in others, it is found to be independent of these variables.

Ccronbach's alpha score is computed in the various domains of the QOL questionnaire to assess the consistency and reliability of the questionnaire. A score of >0.7 is considered necessary for the validity of the questionnaire in a domain. The Cronbach's alpha in our study was >0.7 for social well-being and acceptance, functioning, participation, and physical health subscores. Hence, this scale was valid to measure these domains. However, this scale was not found applicable to access some subscores. Emotional well-being and self-esteem as well as pain and impact of disability could not be measured accurately as the patient proxy version of the questionnaire was used. Access to services had a lower Cronbach's alpha score as developing countries like India have poor availability of rehabilitation services. Family health domain also could not be assessed due to the lack of understanding of the parents taking the questionnaire.

Conclusion

QOL in children with CP was compromised. The CP-QOL questionnaire can be used to measure QOL in Indian children with CP. The primary care giver version of the CPQOL questionnaire has good validity to assess the QOL in children with CP. Further studies with mild modifications in domains with Cronbach's alpha <0.7 may be required.