Quality of Life (QOL) has been defined by World 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, standards and concerns [1]. The more specific
concept of Health-related Quality of Life (HRQOL) has been defined to
differentiate health from more general social and environmental issues
[2].
HRQOL is especially relevant to conditions that are
chronic and disabling such as cerebral palsy (CP) [3].
There is a paucity of published literature on HRQOL in children with CP,
especially from the Indian subcontinent. The present study determined
HRQOL using Lifestyle Assessment Questionnaire –
Cerebral Palsy (LAQ-CP) [4].
Methods
This study was carried out at Child Development
Center (CDC) of a tertiary care centre located in New Delhi. Children in
the age group of 3-10 years diagnosed with cerebral palsy, and receiving
regular (at least 1 visit every 6 weeks) physical therapy/occupational
therapy at CDC for last one year were enrolled. The exclusion criteria
were non-availability of the primary caregiver, presence of other
chronic illnesses not typically associated with cerebral palsy, and
families having another child with cerebral palsy, autism, or
intellectual disability.
After obtaining informed consent from the parents, a
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 accompanying impairments like seizures, hearing or vision
impairments, cognitive deficits, feeding problems, contractures and
behavioural problems. Developmental quotient/Intelligence quotient
assessment and behaviour assessment was done by a clinical psychologist.
The probable aetiology was determined as per the
history and previous records.
The motor disability of the child was classified
using Gross Motor Functional Classification System (GMFCS) into 5
levels (Children with level I have the most independent motor function
and the child in level V have the least) [5].
LAQ-CP questionnaire evaluates the impact of
disability in children with CP and their families. It has 46 items,
organized into six dimensions: physical independence, mobility, clinical
burden, schooling, economic burden, and social integration [6]. Based on
scores in each item, dimensional scores and a final standard score,
known as Lifestyle Assessment Score (LAS) is obtained. These are
expressed as a percentage score. The classification of the HRQOL
according to LAS is as follows: Good (<30%); mildly-affected (30-50%);
moderately-affected (51-70%); and severely-affected (>70%) [6].
Permission was taken from the authors of LAQ-CP to
translate it into Hindi language. It was translated using
back-translation method with necessary socio-cultural modifications.
The sample size was based on a previous study, in
which mean (SD) LAS was 45 (19) [7]. To estimate similar LAS, with
precision of 5% at 95% confidence level, 70 subjects were required. Data
analysis was done using SPSS version 16.0. The study protocol was
approved by the Institutional Ethics Committee.
Results
One hundred children (64 males) were enrolled, the
mean (95% CI) age was 61.0 (56.5,65.5) months. The socio-demographic
characteristics, types of CP, and probable etiology are shown in
Table I. Most of the patients had associated co-morbidities: 31
(31%) had seizure disorder, 37 (37%) had squint, 6 (6%) had cortical
blindness, 2 (2%) had hearing impairment, 81 (81%) had global
developmental delay/intellectual disability (26 mild, 19 moderate, 18
severe and 18 profound), 18 (18%) had behavior problems, 42 (42%) had
drooling or other feeding problems, and 4 (4%) patients had
contractures.The GMFCS level of patients was as follows: level I-
18 (18%), level II-12 (12%), level III-12 (12%), level IV-28
(28%) and level V-30 (30%).
TABLE I Baseline Characteristics of the Study Population (N = 100)
Characteristics
|
n (%) |
Urban household |
86 (86) |
Socio economic status* |
|
Upper class |
2 (2) |
Upper middle class |
17 (17) |
Lower middle class |
32 (32) |
Upper lower class |
49 (49) |
Type of cerebral palsy |
|
Spastic |
83 (83) |
Quadriplegia
|
32 (39) |
Diplegia |
35 (42) |
Hemiplegia |
15 (18) |
Triplegia |
1 (1) |
Hypotonic |
4 (4) |
Ataxic |
3 (3) |
Choreoathetoid |
1 (1) |
Mixed: Spastic and athetoid |
3 (3) |
Mixed: Spastic and dystonic |
6 (6) |
Probable etiology |
|
Hypoxic-ischemic encephalopathy
|
40 (40) |
Prematurity
|
26 (26) |
Kernicterus |
7 (7) |
Congenital hydrocephalus
|
4 (4)
|
Post-meningitic sequalae
|
5 (5) |
Brain tumor (Operated) |
1 (1) |
Head trauma |
1 (1) |
Not known |
16 (16) |
* According to Kuppuswamy classification. |
The mean dimensional scores are shown in Table
II. Nine (9%) patients had good, 24 (24%) had mildly-
affected, 37 (37%) had moderately-affected, and 30 (30%) had
severely affected HR-QoL.
TABLE II Mean Dimensional Scores Obtained in LAQ-CP
Dimensions |
Mean score (95% CI) |
Physical independence |
62.6 (57.2- 68.0) |
Mobility
|
59.1 (54.3-63.9) |
Clinical Burden |
18.5 (17.0-20.0) |
Schooling |
28.9 (25.7-32.1) |
Economic burden |
33.7 (31.1-36.3) |
Social integration |
47.6 (44.6-50.6) |
Combined |
56.6 (53.0-60.2) |
LAS was significantly higher in boys as compared to
girls [59.4 (16.7) vs. 50.4 (19.0), P=0.01]. No
association was found between LAS and socioeconomic status of the
patient. LAS was significantly more in subjects with quadriplegic CP,
seizure disorder, visual problems, cognitive deficits and feeding
problems (data not shown). The Pearsons’ correlation coefficient of LAS
and the GMFCS levels was 0.907 (P<0.001).
Discussion
In the present study, HRQOL was moderately to
severely affected in two-third of children with CP, and their families.
The physical independence, mobility and social integration dimensions of
HRQOL were much more severely affected than the clinical burden,
economic burden and schooling dimensions. Higher LAS in children with
quadriplegic CP was expected as they have significant activity
limitation and associated co-morbidities like epilepsy and cognitive
deficits [7].
A study from Malaysia [8] using the same
questionnaire reported good HRQOL in the majority, and only 11.1% having
severely-affected HRQOL. The better QOL in this study could have been
due to difference in severity, psychosocial factors and availability of
the health care services.Other studies done worldwide show that HRQOL is
adversely affected in children with CP; however, majority of these
studies have used generic QOL measures like ‘Child Health Questionnaire’
(CHQ) and ‘Pediatric Quality of Life Inventory’ (PedQL). Varni, et al.
[9] compared HRQOL across ten chronic disease clusters and 33 disease
categories/severities, using PedsQL. Patients with CP self-reported the
most impaired HRQOL across all disease categories [9]. Studies done
using CHQ have also shown significant impairment in most of the domains,
especially so in physical function and parental impact domain [10-14].
LAQ-CP has limitations of not addressing some of the
domains of QOL, as it specifically measures the impact of disability on
the life of children with cerebral palsy and their families.Being a
single-center study, and including a uniform population of children
receiving regular therapy, findings may not be representative of the
general population. Our study relied on parental report, due to lack of
a self-report version of the questionnaire; accurate measurement of
HRQOL may have been compromised.
To conclude, HRQOL is significantly affected in
majority of children with cerebral palsy. Measurement of HRQOL should be
used with other forms of assessment, to indicate areas in which a person
is most affected and help the practitioner in making appropriate
decisions for patient care.