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Health-related Quality of Life in Children with Cerebral Palsy and Their

Families.

Article in Indian Pediatrics · May 2014

DOI: 10.1007/s13312-014-0414-z · Source: PubMed

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 RESEARCH BRIEF

Health-related Quality of Life in Children with Cerebral Palsy and Their

Families
*MANJUSHA DOBHAL, MONICA JUNEJA, RAHUL JAIN, SMITHA SAIRAM AND *D THIAGARAJAN
From *Santosh College of Physiotherapy, Santosh Medical College and Hospital, Ghaziabad, UP; and Child Development Center,
Maulana Azad Medical College, New Delhi; India.
Correspondence to: Prof Monica Juneja, C-77, South Extension –II, New Delhi 110 049, India. drmonicajuneja@gmail.com
Received: August 22, 2013; Initial review: August 24, 2013; Accepted: March 06, 2014.

Objective: To determine the health-related quality of life in moderately-affected and 30% had severely-affected health-
children with cerebral palsy and their families. related quality of life. The physical independence, mobility and
social integration dimensions were much more severely affected
Methods: One hundred children (3-10 years of age) receiving
than the clinical burden, economic burden and schooling
regular rehabilitation therapy for cerebral palsy for last 1 year at a
dimensions.
Child Development Centrer were enrolled and the Lifestyle
assessment questionnaire – cerebral palsy was administered to Conclusion: Health-related quality of child is affected in most
the parents. children with cerebral palsy.
Results: 9% had good, 24% had mildly-affected, 37% had Keywords: Cerebral Palsy, Quality of life, Questionnaire.

uality of Life (QOL) has been defined by World After obtaining informed consent from the parents, a

Q Health Organization 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 relationship to their goals, expectations,
detailed history was taken and neurological examination
was done. CP was classified based on the predominant
tone. Patients with spastic CP were further classified based
on the topography. The children were evaluated for
standards and concerns [1]. The more specific concept of accompanying impairments like seizures, hearing or vision
Health-related Quality of Life (HRQOL) has been impairments, cognitive deficits, feeding problems,
defined to differentiate health from more general social contractures and behavioural problems. Developmental
and environmental issues [2]. quotient/Intelligence quotient assessment and behaviour
assessment was done by a clinical psychologist. The
HRQOL is especially relevant to conditions that are probable aetiology was determined as per the history and
chronic and disabling such as cerebral palsy (CP) [3]. previous records.
There is a paucity of published literature on HRQOL in
children with CP, especially from the Indian The motor disability of the child was classified using
subcontinent. The present study determined HRQOL Gross Motor Functional Classification System (GMFCS)
using Lifestyle Assessment Questionnaire – Cerebral into 5 levels (Children with level I have the most
Palsy (LAQ-CP) [4]. independent motor function and the child in level V have
the least) [5].
METHODS
LAQ-CP questionnaire evaluates the impact of
This study was carried out at Child Development Center disability in children with CP and their families. It has 46
(CDC) of a tertiary care centre located in New Delhi. items, organized into six dimensions: physical
Children in the age group of 3-10 years diagnosed with independence, mobility, clinical burden, schooling,
cerebral palsy, and receiving regular (at least 1 visit every economic burden, and social integration [6]. Based on
6 weeks) physical therapy/occupational therapy at CDC scores in each item, dimensional scores and a final
for last one year were enrolled. The exclusion criteria standard score, known as Lifestyle Assessment Score
were non-availability of the primary caregiver, presence (LAS) is obtained. These are expressed as a percentage
of other chronic illnesses not typically associated with score. The classification of the HRQOL according to
cerebral palsy, and families having another child with LAS is as follows: Good (<30%); mildly-affected (30-
cerebral palsy, autism, or intellectual disability. 50%); moderately-affected (51-70%); and severely-

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DABHOL, et al. CEREBRAL PALSY AND QUALITY OF LIFE

affected (>70%) [6]. demographic characteristics, types of CP, and probable

etiology are shown in Table I. Most of the patients had
Permission was taken from the authors of LAQ-CP to
associated co-morbidities: 31 (31%) had seizure
translate it into Hindi language. It was translated using
disorder, 37 (37%) had squint, 6 (6%) had cortical
back-translation method with necessary socio-cultural
blindness, 2 (2%) had hearing impairment, 81 (81%) had
modifications.
global developmental delay/intellectual disability (26
The sample size was based on a previous study, in mild, 19 moderate, 18 severe and 18 profound), 18 (18%)
which mean (SD) LAS was 45 (19) [7]. To estimate had behavior problems, 42 (42%) had drooling or other
similar LAS, with precision of 5% at 95% confidence feeding problems, and 4 (4%) patients had
level, 70 subjects were required. Data analysis was done contractures.The GMFCS level of patients was as
using SPSS version 16.0. The study protocol was follows: level I- 18 (18%), level II-12 (12%), level III-12
approved by the Institutional Ethics Committee. (12%), level IV-28 (28%) and level V-30 (30%).
RESULTS The mean dimensional scores are shown in Table II.
One hundred children (64 males) were enrolled, the mean Nine (9%) patients had good, 24 (24%) had mildly-
(95% CI) age was 61.0 (56.5,65.5) months. The socio- affected, 37 (37%) had moderately-affected, and 30
(30%) had severely affected HR-QoL.

LAS was significantly higher in boys as compared to

TABLE I BASELINE CHARACTERISTICS OF THE STUDY
girls [59.4 (16.7) vs. 50.4 (19.0), P=0.01]. No association
POPULATION (N = 100)
was found between LAS and socioeconomic status of the
Characteristics n (%) patient. LAS was significantly more in subjects with
quadriplegic CP, seizure disorder, visual problems,
Urban household 86 (86) cognitive deficits and feeding problems (data not shown).
Socio economic status* The Pearsons’ correlation coefficient of LAS and the
Upper class 2 (2) GMFCS levels was 0.907 (P<0.001).
Upper middle class 17 (17)
DISCUSSION
Lower middle class 32 (32)
Upper lower class 49 (49) In the present study, HRQOL was moderately to severely
Type of cerebral palsy affected in two-third of children with CP, and their
Spastic 83 (83) families. The physical independence, mobility and social
integration dimensions of HRQOL were much more
Quadriplegia 32 (39)
severely affected than the clinical burden, economic
Diplegia 35 (42) burden and schooling dimensions. Higher LAS in
Hemiplegia 15 (18) children with quadriplegic CP was expected as they have
Triplegia 1 (1) significant activity limitation and associated co-
Hypotonic 4 (4) morbidities like epilepsy and cognitive deficits [7].
Ataxic 3 (3)
A study from Malaysia [8] using the same
Choreoathetoid 1 (1) questionnaire reported good HRQOL in the majority, and
Mixed: Spastic and athetoid 3 (3) only 11.1% having severely-affected HRQOL. The better
Mixed: Spastic and dystonic 6 (6)
Probable etiology TABLE II MEAN DIMENSIONAL SCORES OBTAINED IN LAQ-CP
Hypoxic-ischemic encephalopathy 40 (40)
Dimensions Mean score (95% CI)
Prematurity 26 (26)
Kernicterus 7 (7) Physical independence 62.6 (57.2- 68.0)
Congenital hydrocephalus 4 (4) Mobility 59.1 (54.3-63.9)
Post-meningitic sequalae 5 (5) Clinical Burden 18.5 (17.0-20.0)
Brain tumor (Operated) 1 (1) Schooling 28.9 (25.7-32.1)
Head trauma 1 (1) Economic burden 33.7 (31.1-36.3)
Not known 16 (16) Social integration 47.6 (44.6-50.6)
* According to Kuppuswamy classification. Combined 56.6 (53.0-60.2)

INDIAN PEDIATRICS 386 VOLUME 51__MAY 15, 2014

 DABHOL, et al. CEREBRAL PALSY AND QUALITY OF LIFE

WHAT THIS STUDY ADDS

• Health related Quality of Life is significantly affected in majority of children with cerebral palsy and their families.

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and ‘Pediatric Quality of Life Inventory’ (PedQL). Varni, questionnaire: an instrument to measure the impact of
et al. [9] compared HRQOL across ten chronic disease disability on the lives of children with cerebral palsy and
clusters and 33 disease categories/severities, using their families. Child Care Health Dev. 1998;24:473–86.
PedsQL. Patients with CP self-reported the most 5. Palisano R, Rosenbaum P, Walter S, Russell D, Wood E,
impaired HRQOL across all disease categories [9]. Galuppi B. Development and reliability of a system to
Studies done using CHQ have also shown significant classify gross motor function in children with cerebral
impairment in most of the domains, especially so in palsy. Dev Med Child Neurol. 1997;39:214-23.
6. Mackie PC, Jessen EC, Jarvis SN. The Lifestyle
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LAQ-CP has limitations of not addressing some of upon Tyne: North of England Collaborative Cerebral Palsy
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7. Singhi P. The child with cerebral palsy- clinical
impact of disability on the life of children with cerebral considerations and management. Indian J Pediatr.
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including a uniform population of children receiving 8. Yee Lim MS, Wong CP. Impact of cerebral palsy on the
regular therapy, findings may not be representative of the quality of life in patients and their families. Neurology
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To conclude, HRQOL is significantly affected in PedsQL 4.0 Generic Core Scales. Health and Quality of
majority of children with cerebral palsy. Measurement of Life Outcomes. 2007;5:43.
10. Liptak GS, O’Donnell M, Conaway M, Chumlea CW,
HRQOL should be used with other forms of assessment,
Worley G, Henderson RC, et al. Health Status of children
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Contributors: MJ, MD, DT and RJ: conceptualizing and
cross-sectional survey using the Child Health
designing the study; MD and SS: acquition and analysis of data;
Questionnaire. Dev Med Child Neurol. 2003;45:194-9.
RJ, SS, and MD: prepared the initial draft; MJ, RJ and DT:
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revised the manuscript critically for important intellectual
cerebral palsy. Arch Phys Med Rehab. 2005;86:940-54.
contents. The final version was approved by all authors.
13. Varni JW, Burwinkle TM, Sherman SA, Hanna K, Berrin
Funding: none; Competing interests: None stated.
SJ, Malcarne VL, et al. Health-related quality of life of
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