Download Effects of Congenital Heart Disease on Quality of life

Effects of Congenital Heart Disease on Quality of Life
Short Synopsis
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Ph.D Programme 2012-13
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Pratibha Verma Bagga
12/Ph.D/029
25.01.2013
Supervisor
:
Dr. Priyanka Srivastava
Professor, FMS
DEPARTMENT OF MANAGEMENT
FACULTY OF MANAGEMENT STUDIES
MANAV RACHNA INTERNATIONAL UNIVERSITY
SECTOR-43, SURAJKUND –DELHI ROAD, FARIDABAD – 121001
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Certified that the synopsis “Effects of Congenital Heart Disease on Quality of Life” is the
record of bonafide work carried out by Ms. Pratibha Verma Bagga under my supervision.
The research proposal has been read thoroughly and it is as per the guidelines and is
grammatically correct. Further it is original piece of her work and free from plagiarism.
Dr. Priyanka Srivastava
Professor
Department: Faculty of Management Studies
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Abstract
Congenital Heart Disease (CHD) means the structural/functional defect in heart by birth.
Almost 8-10 (reported cases) out of 1000 live births in India suffer from CHD. The problem
is becoming a matter of concern for the developing economies. Earlier studies were
concerned only with the clinical aspect of the disease but due to increasing population of the
disease reported every year the researchers found it a matter of concern to look into the
quality of life aspect of the disease. No doubt the main determinant of the quality of life of
an individual is health but with the changing scenario the other determinants like family,
psychosocial factors and social environmental also play determinants in the quality of life.
Keeping the above aspect in view the present study aims at the analysing the determinants
which play important role and affect the quality of life of an individual suffering from
congenital heart disease. Primary data from reputed hospital of Delhi will be collected after
getting ethical approval from the concerned authorities. The study would be done on the
basis of the questionnaire on Paediatric Cardiac Quality of Life Inventory (PCQLI), a study
conducted by PCQLI Research Group, The Heart Institute Cincinnati Children’s Hospital
Medical Centre 3333 Burnet Avenue, Cincinnati OH 45229. The study would help to
determine the variables affecting individual quality of life.
Key words: Congenital heart disease, quality of life, CHD.
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CONTENTS
Page Number
1. Introduction
1.1 Objectives of Study
4
5
2. Literature Review
6
3. Proposed Research Plan and Methods
14
4. References
16
3
1. Introduction
Congenital Heart disease (CHD) is the structural/functional defect of the heart in neonatal by
birth. The problem though prevalent by birth but sometimes detected in the later years of life.
In India about 8-10 children per 1000 live births are detected with CHD. It is one of the
major reasonsin India where birth rate is very high. Approximately 10% of present infant
mortality in India may be accounted for the CHD alone (Saxena, 2005). These statistics are
based on the reported cases which came into light. Numerous others are not even detected or
reported due to lack of awareness, deliveries at homes and lack of knowledge of the health
practitioner.
In India, where we have limited resources and poor access to health services, the family of
the children with CHD have to face social stigma the economic burden of the treatment. In
spite that the tools to diagnose the problem are available, people are not aware of these tools.
It is not only a question of affordability but also a question of accessibility. The three
dimensions of human development being provided in Human Development Index (HDI) –
health, education and income are also affected. India whose HDI rank is 136 among 186
countries with indexing standing at 0.554 showing a low rate as compared with other
developing countries.
Quality of life is a subjective matter and has different perceptions for different individuals.
Many studies have been done by the researchers on quality of life deals with the individual
perception towards his/her quality of life. As it affects the treatment of the patients it has
become a matter of concern for the chronically ill patients. Earlier this aspect of life was not
given much consideration, it was seldom taken into account that, what factors should be
considered to improve the quality of life of such patients.
Many studies had been done on the prevalence and incidence of CHD in the world.
According to a report by World Health Organisation (WHO) on birth defects it was found
that many birth defects could prove to be life threatening and even can affect the whole life of
the individual and family. The impact of these birth defects could be felt by socioeconomic
changes in the society as well as country.
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1.1
Objectives of the Study
The web based literature on the CHD showed that earlier the medical aspect of the disease
was being considered but with advancement of technology, the preference being given to
individual quality of life in these patients is considered to be an aspect of s study. Qualities of
life which can either be health related or general not only affect the individual but also the
family. Keeping this aspect in mind the following objectives are kept in mind for current
study.
Based on the literature survey, the study will try to achieve following objectives:
1. To study the impact of congenital heart disease on overall Quality of life (QoL)
(domains of study – physical health, psychological health, social relationship and
environment).
2. To analyse how far Socio Economic Status would contribute to QoL of CHD patients.
3. To study the influence of gender, family type and stage (childhood or adolescence) on
quality of life.
4. To suggest suitable intervention strategies for the sample group based on the findings
of the study.
1.2
Significance of the study
1. The study would help to peep into health related quality of life of the patients with
CHD.
2. The study would help to improve the awareness among the patients with CHD
towards their perception of life.
3. Data obtained from this study would be useful for assistance to researchers, social
workers to understand the problems faced by CHD patients
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2. Literature Review
Congenital Heart Disease (CHD) which is the congenital abnormality of heart by birth leads
to many social and economic problems but it affects the quality of life of the individuals
suffering from the disease.
The web based literature on the CHD showed that the studies are done in the field to access
the quality of life of patients so that it would help medical professionals to understand better
the treatment perspective and its evolution and factors that influence the quality of life of
patients.
It was found
by Rijen (2002) that the
patients with CHD face lot of problems in
psychological aspect also. This was done to analyse the psychosocial behaviour of the
patients with CHD. With the progress of surgical procedures and techniques the survival rate
of these patients has increased upto a large extent. Since it was a longitudinal study covering
a period of around 20-33 years. The first phase of the study was conducted in 1989 and 1991
on the patients who underwent for corrective surgery for CHD. Patients who were younger
than 15 years at the time of surgery were eligible to be sample. The population under study
was followed up in 2000-2001 consisted of a sample of 498 patients. Patients for various
types of CHD like tetrollogy of fallot, ventricular septal defect, articular septal defect were
considered.It was found that most of the patients suffering from CHD are living on their own
in comparison to reference population but 18% of them are found to be living with their
parents or the caretakers. Their marital status showed that 72% among them are married or in
a relationship with 34% of them had one or more offspring. 27% of them followed some sort
of education and around 85% among them had paid jobs. Overall it was found that their
living conditions, marital status and social status showed similarity to almost normal. But as
concerned to their emotional pattern it was found that adult patients with CHD suffer from
more psychological stress.
It was found that more favourable emotional outcomes were
found in patients with tetra logy of fallot as compared to patients with arterial septal defects.
Social functioning of these patients were quiet favourable and was found to be positive. It
was found that they were able to participate socially, in education, occupation and intensive
sports thus able to live normal lives.The study showed some limitations. The sample of
patients taken concerned a generation of CHD who were treated with different techniques but
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with the advancement in the surgical procedures and change in the psychosocial needs the
biographical characteristics and social functioning of the study might not be generalised.
The study done by Moons et al (2004) analyses the aspects of the quality of life of adults
suffering from congenital heart disease. The main concern of the study was to study the
various aspects relatied to psychosocial, educational and behavioural changes which affect
the quality of life. This study used standardised and pre-defined questionnaires to determine
the various components related to quality of life. It was found that the degree of the overall
life satisfaction is influenced by the individual perception towards certain aspects important
to him. The study inferred that the quality of life of congenital heart disease patients depends
on their perception towards the important aspects of their life.
Saxena A., (2005) in her paper “Congenital Heart Disease in India: A status report” states
that the main problems arises due to unavailability of factual data.
Since India is a
developing country and the resources devoted to health care are limited, options of treatment
are concentrated in some regions only. Moreover lack of facilities for paediatric cardiac care
and trained personnel has become a challenge for the health care providers. Unless and until
awareness is created among masses the problem will remain as it is. The article analysed that
the introduction of modern techniques has reduced the problem. With available treatment
modalities over 75% of the infants with CHD can lead near normal lives but this is restricted
to developed countries only. Treatment in developing countries is still in infancy. Due to
lack of infrastructure for paediatric care the problem become more critical. According to
American Cardiology Association it is recommended that for every 5 million people there
should be at least one paediatric cardiac care unit and it should be around 200 for India. The
actual situation is far from the statistics, it is only 14 in totality out of which there is only one
government hospital and the rest are private or semiprivate. The problem become more
critical due to geographical location of these centres as most of they are in the Southern part
of India or in National Capital of Delhi. The reasons stated for the poor cardiac care in India
are mainly due to lack of awareness, as most of the births in India occur without supervision
of paediatrician, moreover paediatrician themselves are not trained enough to detect heart
defect. Secondly, limited knowledge become hindrance and leads to delay in detection.
Thirdly, some states in the country even do not have any paediatric cardiac care units, and
patient has to travel long distance for treatment. Fourthly, some hospitals do not encourage
paediatric cardiac care as it demand more than adult cardiology. Lastly, heart disease in
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children in India doesn’t come in priority areas of health care. The Study also suggested
measures to improve the situation which includes increasing awareness about CHD through
electronic and print media, seminars and training for paediatrics and to provide financial
assistance to the affected children through various policies, agencies and welfare funds. It
has been concluded that Centre and State government require participating actively for
tackling the situation.
A study conducted by Johnson (2005) analysed the emotional and behavioural problems
faced by the children and adolescents suffering from CHD. The child has to suffer because
of repeated examinations like ECG echocardiography and other surgical procedures which
lead to physiological anxiety to him than his normal peers. Recent experiences concerning the
scar, physical condition and imposed restrictions are the strongest predictors for behavioural
and emotional problems as reported by patients themselves. The study states that
“Psychological implications are a significant part of chronic illness and they affect prognosis
and outcome. CHD which are diagnosed early can influence mother infant interaction from
the beginning, in a crucial period of the infant’s psychological development and thus may
adversely affect the mental health of children and adolescents.” The study also describes
various types of CHD and their treatment effect on the children analysed. The fear of being
operated created a long lasting effect on the children as well as the family. In some studies it
was found that the children face behavioural problems after cardiac surgery, it was also
noticed that they have changed personality aspects. It was concluded that they need a planned
intervention and effective psychological guidance to deal with the problem.
The study by Subirana (2005) focussed on the historical treatment being done on CHD
patients who give rise to a population of adult patients of CHD, who need constant
monitoring and care. There was an emphasis on restructuring of health care system to manage
and monitor the patients with CHD, but as stated in earlier studies, the availability of data is a
big obstacle. Availability of fetal cardiographs made it possible to detect the problem at
prenatal stage.
If the problem is complex it would give an option of terminating the
pregnancy. Prevalence of CHD includes various forms and most of the studies focussed them
jointly, considering under structural anomaly of heart. A study on a Spanish community
found also taken around 8.96 cases of CHD per thousand live births. It has been indicated
that survival rate of such children has increased from the past. The study concluded that
since the problem of CHD cannot be cured and require periodical monitoring leading to
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emergence of new population of adults with CHD, so it requires some concrete steps in the
direction of treatment and care of these patients, which involve obstertiticians, neonatologists,
intensive care physicians, anasthelogists, paediatric cardiologist, adult cardiologist, paediatric
heart surgeon and adult heart surgeon. The task is not easy and requires enormous health
care planning and organisation.
Malnutrition after the corrective intervention done in patients with CHD was accessed by
Vaidyanthan et al (2007). The study mainly focussed on the nutritional status of the children
with CHD before and after the surgery or corrective intervention. All the factors related to
child’s demographic, cardiac, socio-economic and cultural practices were taken into
consideration. Their growth related data – intake of calories, proteins, carbohydrates etc. was
also collected. Socio-economic status was calculated by using the modified Kuppuswamy
Scale. The result of the study with 476 patients who underwent corrective intervention for
CHD were calculated and found that mean age was 15.2 ± 16.2 months. The study reports
high rate prevalence of malnutrition in children with CHD but that has improved somewhat
after corrective intervention. The results of the study may be beneficial for the physician
taking care of CHD patients in developing countries. But the study also had limitation as the
children suffering with severe CHD were not taken into consideration. If corrective measures
would be taken their nutritional status can be improved by follow-ups.
The Study conducted by Laila et al (2009) focussed on the parent’s knowledge about CHD in
relation to growth of their child. Parental education was also considered a parameter for the
study. It was also studied whether the parents are aware of the complexity of the disease of
their child. Study was done on 100 children in a hospital in Sudan, aged between 6 months to
15 years. Parent’s interviews were evaluated on the basis of their knowledge, attitude, and
level of education along with growth of the child. The most common CHD found was
Ventricular Septal Defect (VSD) 22% and tetra logy of fallot 18%. Female to male ratio of
children with CHD was found to be 1.13:1 and it was found that thirteen fathers and twenty
mothers among the parents interviewed were illiterate. Eighty parents mentioned that their
doctor fully explained their children’s illness. Parent’s ability to locate the heart disease of
their children was also evaluated by a diagram. Overall growth of the child was related to
parent’s knowledge and education. It was concluded that the frequency of malnutrition in
children with CHD in the areas are comparable to literature. Parent’s information about their
children’s CHD and dietary requirement has to be consolidated.
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The study conducted by Tondon A. et al (2010) analysed the various risk factors associated
with prevalence of CHD. Thus the study was conducted as case control study in Vellore,
India with the aim of investigating the risk factors. Various statistical tests were used to
verify the results. It has been concluded from the previous studies that around 1, 80,000
children are born with CHD in India and this is the main reason of infant mortality in India.
With the advancement of surgical procedures and other diagnostic tools today the accurate
diagnose of CHD can be predicted before birth.
But unfortunately these facilities are
available only in developed countries or developed areas of India only. In our country we
still lack necessary mother and child care facilities. Moreover defects related to genes and
environmental factors could not be detected easily in a developing country like India.
Although some studied found that increased maternal age significantly affect the prevalence
of CHD. But some reports also showed that young maternal age could also be a risk factor.
This study included many studies which showed various risk factors for CHD prevalence as
maternal rubella infection, maternal upper respiratory tract infection, type 1 diabetes,
influenza, febrile illness, phenylktournia (PKU). Some studies showed conflicting results for
maternal alcohol consumption and smoking. A study also found that if mother is exposed to
certain chemicals like dyes, lacquers, paints and organic solvents during the first trimester
had slightly higher risk of CHD that unexposed control group. India is a country which faces
many health problems lacks inadequate health education and a weak legal system to control
the environmental pollution which influences the prevalence of CHD.
The study was
conducted in Christian Medical College and hospital (CMC), Vellore for a period of two
years (2006-2008) and the sample selected is paediatric live births and inpatients. Samples
from different groups of population were randomly collected. The patients with symptoms
like rapid breathing, fatigue, cyanosis, heart murmur, failure to thrive, abnormal chest X-ray
or family history were diagnosed further with X-ray analysis, EEG and echocardiography
examination. A total sample of 110 patients was selected for study. All the sample/subject
selected was interviewed by a standard questionnaire with consent from patient and family
members. The study included their demographic characteristics, birth details and parents’
details. It was concluded in the study that in developing country like India, there were only
few studies being done to highlight the risk factors associated with CHD. It was suggested
that the government should promote health education facility for females of child bearing
age. Pre-marital counselling should be promoted and genetic counsellors should be consulted
for family history. Prenatal care to the mother with more advanced diagnostic tools should be
provided. Environmental risk factors should be taken care of.
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Bernier P.L. et al (2010) reviewed the available literature in the field. It was found that the
various studied performed on prevalence of CHD show variations in the data.
As the
problem has become a global and, the care of patients with CHD becomes necessary because
of its complex and resource intensiveness. Access to care is limited to developed countries
and developing countries are still in the age of infancy. The study mainly focuses on the
challenges being faced by children and adult with CHD. The study also collected data on
epidemiology and demographic profile. Different search terms were used through various
medical sites. According to the collected articles countries were divided on the basis of their
income, based on World Bank data.
Resources available for the treatment of CHD,
worldwide were also examined. The aim was to examine and identify the available resources
in comparison to prevalence of the disease. The study analysed 115 research studies from
literature search, out of which 35 studies presented statistics about the incidence in general
population. The large data was found from European Registry of Congenital Anomalies
(EUROCAT) with 43 registries in 20 countries with a study population of over 18 million
births. It was found that average incidence of CHD after birth was 6.4 per 1000 live births. It
was found that cases of CHD are more prevalent in Asia Region than other regions of the
world. Analysis of the government health records of Quebec, Canada shows less incidence of
CHD. The factors behind these variations could be lack of access to medical care. Although
in Europe that prenatal detection of cardiac malformations were found high leading to
increase in aborted foetus. It was concluded in the study that CHD is the most common of all
types of congenital malfunction but still not considered seriously at global level by policy
makers in the field of health care. In recent years the steps are taken to provide better
treatment and care to children affected with CHD. First of all it needs to be identified the
prevalence and incidence of CHD and the burden of CHD to be borne by the health care
providers. It has been found that the treatment being provided is more effective in present
scenario.
Standardization of data needs to be done, so that it would help health care
professionals. The biggest challenge in the way of CHD worldwide is to collect health
professionals, policy makers, politicians and others to work together and approach in
stepwise manner so that the children with CHD would get appropriate medical and surgical
care.
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The study done by Mugal (2011) tried to analyse the impact of socioeconomic status and its
impact on the treatment being provided to CHD children.
The study was mainly an
observational study, conducted in the Children’s Hospital/Institute of Child Health, Lahore
for a period of around one year (2010). All the patients from the age group of 1 day to 15
years were considered, who were undergoing a cardiac surgery or for angiographic
intervention. A sample of 211 patients was selected among them along with record of their
socioeconomic status based on their income.
A relation was studied between their
socioeconomic status and the cost of treatment being involved for the surgery/medicine of
CHD. Most of the subjects selected for study belonged to Middle or lower socioeconomic
status and the main definitive treatment was surgery. The cost was found to be a hindrance in
the way of treatment.
As the treatment of these patients with CHD is highly dependent on cost intensive technology
and quiet resource intensive, the cost of care for such children are found to be prohibitive in
Pakistan.
Health care facilities and their availability have been directly linked to
socioeconomic status. Moreover the paediatric care in Pakistan is still in developing stage.
Only very few centres are available in Pakistan which provide health care to such patients.
As the study was an observational study based on the answers being provided by the parents
of the children (mother or father) the required information regarding their demographic
profile, mode of admission, final diagnosis and type of definitive treatment were noted. Also
demographic independent variables were considered. For considering the socioeconomic
status scale a scale developed by Kuppuswamy was used. In that educational level (Primary,
secondary, higher) of parents, occupation (professional, skilled/unskilled) were recorded. All
these variables against the type of definitive treatment are being provided. If family is getting
any type of financial assistance from any source was also recorded. The study concluded that
majority of the families with CHD children, belonged to middle socioeconomic class, few
belonged to lower socioeconomic group and very few to upper socioeconomic class. Literacy
rate was around 74.4% in fathers and 63% in mothers. 39.8% fathers were employed as
skilled and 26.5% ran small business only. 9.5% were government servants with nongazetted post. Most of the mothers were found to be housewives. So it was found that
developing countries like Pakistan face numerous problems for treatment of CHD children,
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who require frequent hospitalization and high cost of treatment, which is negatively related to
their socioeconomic status.
The study by Silva et al (2011) tried to assess the quality of life of adolescents and young
adults suffering from congenital heart disease and tried to examine the variables that have
negative impact on the quality of life of these patients. It was found by them that quality of
life domains are very much influences by the social support which is an important variable in
determining the quality of life. The patients which receive better social support showed
better quality of life. So it is a determinant which is positively related to the quality of life.
It also showed that a positive family environment with good expressiveness and less conflict
also influence the quality of the life of the patients with congenital heart disease. The study
concluded that the patients under study showed better perception towards the quality of life.
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3. PROPOSED RESEARCH PLAN AND METHODS
3.1 Research Design:
Exploratory research design
3.2 Data collection
• Primary Data will be gathered from the patients suffering from congenital heart disease,
from various hospitals of Delhi.
• Secondary data will be sourced from books, newspapers, trade journals, hospital portals,
government agencies, through access to access to databases.
3.3 Sampling Procedure
Convenient Sampling
3.4 Analysis methods
The analysis methods will include the following:
• 5 point Likert scale questionnaires by PCQLI will be used
• Experts attitudes to confirm the validity of questionnaires
3.5 Proposed Procedure
 This study will be a cross sectional survey. Interview of some patients of CHD would be
interviewed through the proposed questionnaire
The participants will be identified in
consultation with people involved in the health services from various hospitals of Delhi.
 The criteria for choosing participants will be based on the severity of the disease. Only the
patients with less severity would be chosen.
 Interviews will be conducted face to face to obtain general information about the situation
 The strengths, weaknesses, challenges faced by CHD patients obtained from interviews
and combined with those from literature review. So in this stage, we will design a list of
challenges through questionnaire with the 5 point Likert scale.
 The data from questionnaires would be analysed by SPSS.
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 Depending upon the availability of data a comprehensive model would be prepared so that
health services can be developed in more advance stage & challenges can be converted into
further opportunities.
Population and Sample
The population of the study would comprise of approximately 25 each for the two age groups
(male and female included) congenital heart patients divided in two different age groups viz.
8-12 (Child) and 13-18 (adolescence) along with their parents. The sample would be selected
from the hospitals of Delhi with paediatric department for cardiology.
Instruments Used
1. Personal Data Questionnaire: The personal data Questionnaire would be used to
obtain basic information of the subject based on the demographic status such as age,
gender, family type, annual income etc.
2. Pediatric Cardiac Quality of Life Inventory (PCQLI): PCQLI questionnaire made
by PCQLI research group of Cincinnati Children’s Hospital Medical Centre, (A
standard and valid Instrument) would be used to study Physical Health, psychological
health, social relationship and social environment.
Proposed Results
The study would help us to analyse the psychological aspects of the patients depending on
their perception of life. It would also be helpful to analyse the impact of social environment
the support on the quality of life and how that can be improved further.
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References
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Research Journal of Biological Science 2 (24), 253-258.
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Pediatric Cardiology-II. Indian Journal of Pediatrics vol.72.
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[9] Moons P. (2005). Individual Quality of life in Adults with Congenital Heart Disease: a
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[10]Smitha R. (2006). Prevalence of Congenital Heart Disease in Mysore. Indian journal of
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[11]Shipra, K. R. (2008). Prevalence of Congenital Heart Disease, Kanpur, India. Indian Pediatrics,
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[12]Silva, A. M. (2011). Quality of life of patients with congenital heart disease. Cardiology in
young, 670-676.
[13]Subirana Maria T. (2005). Congenital heart disease: Present situation and future prospects .
Rev Esp. Cariol 58(12), 1381-4.
[14]Vaidyanathan, B. (2008). Malnutrition in Children with Congenital Heart Disease (CHD):
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[15]
http://www.marchofdimes.com/glue/files/global-report-on-birth-defects-the-
hidden-toll-of-dying-and-disabled-children-full-report.pdf
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