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ORIGINAL ARTICLE
Year : 2011  |  Volume : 14  |  Issue : 1  |  Page : 65-69

The cost of out-patient management of chronic heart failure in children with congenital heart disease


Department of Child Health, University of Benin Teaching Hospital, Benin City, Nigeria

Date of Acceptance01-Feb-2011
Date of Web Publication11-Apr-2011

Correspondence Address:
W E Sadoh
Department of Child Health, University of Benin Teaching Hospital, PMB 1111, Benin City
Nigeria
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Source of Support: None, Conflict of Interest: None


DOI: 10.4103/1119-3077.79255

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   Abstract 

Objective: To evaluated the economic burden to families of managing chronic heart failure in children with congenital heart disease.
Materials and Methods: This longitudinal study was conducted over a year. The families of children with congenital heart disease who were being managed for chronic heart failure in the clinic were recruited for the study. With the aid of a structured questionnaire, data were collected on a monthly basis for three consecutive months, on the family's monthly income, cost of anti-failure medicines, transportation and the number of man-hours spent on clinic visitation. The percentage of the mean monthly income spent on medicines, transportation and the total cost of care were also computed.
Results: Thirty two families were recruited for the study. The children were 16(50%) each of males and females with a mean age of 2.2 ± 1.7 years. The mean monthly income was $314.93 ± 271.36 while the mean cost of total care was $17.61 ± 10.58. The mean percentage of income spent on total care was 16.3 ± 26.2 % with a range of 0.7 - 122%. Families from low socioeconomic class spent significantly higher percentage of income on medicines and total care compared to those in middle or high socioeconomic classes, P = 0.0095 and 0.041 respectively. Only three (0.09%) patients had surgery for their condition.
Conclusion: The mean percentage of income spent on care was significant and amounted to catastrophic health expenditure for a third of the families. Government input in strengthening the existing cardiac centres, establish new ones and subsidising the cost of surgery to meet the needs for open heart surgery for children with CHDs is recommended.

Keywords: Cost, congenital heart disease, heart failure


How to cite this article:
Sadoh W E, Nwaneri D U, Owobu A C. The cost of out-patient management of chronic heart failure in children with congenital heart disease. Niger J Clin Pract 2011;14:65-9

How to cite this URL:
Sadoh W E, Nwaneri D U, Owobu A C. The cost of out-patient management of chronic heart failure in children with congenital heart disease. Niger J Clin Pract [serial online] 2011 [cited 2022 Jan 26];14:65-9. Available from: https://www.njcponline.com/text.asp?2011/14/1/65/79255


   Introduction Top


Congenital heart disease (CHD) occurs in 8/1000 live births globally, and they are the most common congenital anomaly. [1],[2] The prevalence of CHD in Nigeria is 3.5/1000 live births in newborns and 6-8/1000 live births in children. [3] In western countries, these structural heart diseases are corrected as quickly as are indicted either through catheter procedures or via open heart surgery. In developing countries, however, these interventions are often delayed or not done at all because of nonavailability or inadequate facilities. [4],[5] The option of performing the surgery in other countries that have facilities and manpower is hindered by the prohibitive cost, which is often beyond the reach of most of the Nigerian patients. [5] Children with CHDs therefore who initially survive from their disorder live with their disease and their complications.

The severe forms of common CHD, such as ventricular septal defects (VSD), patent ductus arteriosus (PDA) and atrial septal defects, are commonly complicated by recurrent chest infections and congestive heart failure because of the pulmonary overcirculation arising from the shunting of blood to the lungs via the defects or duct. [6] Congestive heart failure is particularly debilitating, affecting the child's growth and overall wellbeing. [7] The presence of chronic heart failure should be an indication for surgical intervention. In the absence of immediate intervention, the heart failure is ameliorated by chronic antifailure medications until surgery is performed or the defect closes spontaneously, as is commonly seen in VSD.

The chronic treatment of heart failure that would entail frequent clinic visits and purchase of drugs may just add on to the psychosocial and economic difficulties experienced by the parents and indeed the families of these children. The quality of life of parents of children with heart disease has been shown to be significantly poorer in the general health and vitality role. [8] There is paucity of reports on the negative economic impact on the families of children with CHD, complicated by chronic heart failure in an environment where surgical intervention for most heart anomaly is unavailable. The present study was carried out to evaluate the cost burden to families of children with structural heart disease who are being managed for chronic heart failure.


   Materials and Methods Top


Setting

The study was carried out in the Pediatric Cardiology Outpatient Clinic of the University of Benin Teaching Hospital (UBTH), Benin City. The center serves patients from the Edo and Delta states and their environs. The children who attended the cardiology follow-up clinic are accompanied by either or both parents. The study was performed between January and December, 2009.

Methods

Consecutive patients with CHD, who were on chronic medication for congestive heart failure and were attending the pediatric cardiology clinic, were recruited for the study. The diagnosis of the CHDs was based on typical history and physical findings and confirmed by findings on chest radiographs, electrocardiogram and echocardiograms. The patients with chronic heart failure were placed on hydrochlorthiazide, spironolactone and captopril. These routine medications were refilled monthly as the medicines are compounded into suspension for most of the patients who were infants or toddlers. The other medications that were occasionally prescribed were antimalarials, analgesics and antibiotics based on the other presenting complaints/conditions. Laboratory tests such as full blood count, blood film for malaria parasite, etc. and electrocardiograms and echocardiogram were done periodically as required.

A proforma was employed to collect the following data on each recruited patient. The biodata of the patients was noted and the socioeconomic class (SEC) of the parents was determined by the methods described by Olusanya et al. [9] The family was the unit of analysis as payment for cost of care was incurred by the family.

Determination of family income

The parents were told to note the total family monthly income. The income consisted of both regular (salary/wages) and incidental incomes from both parents. Other incomes consisted of cash gifts from relatives abroad and sales of properties/other goods. Parents who were artisan, petty traders, farmers, etc. and did not have a salary job were asked to note their daily or weekly income and then compute the total for the month. The total family monthly incomes were computed for three consecutive months and an average was determined.

Determination of cost of treatment and transportation

The total monthly expenditure or cost of treatment comprised the cost of routine medicines for heart failure and transportation. The cost of admission and occasional echocardiograms were excluded as they did not apply uniformly to all the patients. The cost of treatment was computed for 3 months and the average monthly cost was then determined.

The cost of transportation included the amount of money spent to and from the hospital multiplied by the number of family members making the same trip that the transport fare was paid for, noting that children who are carried on their mothers' lap do not usually pay fare. Where transportation was provided by use of family car, the estimated cost of making the journey with public transportation was used instead. The total costs of transportation for 3 months was similarly computed and the average monthly cost of transportation was thus determined.

Man-hours determination

The total amount of time spent in travelling to and from the hospital and the time spent in the hospital were computed and multiplied by the number of working adults from each family. This was done for 3 months and an average was determined as the monthly man-hours spent on the clinic visit.

Ethical clearance was obtained from the University of Benin Ethical Committee.

Statistical analysis

The data were entered into an excel spread sheet and analysis was carried out using SPSS version 13.0. The average and standard deviation was determined for such variable as monthly income, cost of transportation and total monthly expenditure. The proportion of monthly income spent on medicines, transportation and total expenditure on care were expressed in percentages. The association between variables were tested using the chi-square test. The differences between variable means were compared by one-way ANOVA. The P-value at 95% confidence interval was set at <0.05.


   Results Top


A total of 32 families who have children with CHD and were being managed for chronic congestive heart failure were recruited. The number of male and female children was 16 (50.0%) each. The children were aged between 6 months and 5 years, with a mean of 2.2 ± 1.7 years. VSD was the most common CHD in 23 (61.8%) of the patients. The other types of CHD are shown in [Table 1]. The distribution of the SEC among the study families shows that 13 (40.6%) were from a low SEC while 12 (37.5%) and 7 (21.9%) were from middle and high SECs, respectively.
Table 1: Type of congenital heart diseases in the study population

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The monthly income ranged between $8:00 and $966:67, with a mean of $314:93 ± 271:36. Five (15.6%) patients had income lower than the national minimum wage ($50:00) and 27 (84.4%) had monthly income above the minimum national wage. The families spent an average of $17.61 ± 10.58 as total expenditure on care. The proportion of income spent as total expenditure ranged from 0.7 to 122%, with a mean of 16.3 ± 26.2%. The majority of the families, 21 (65.6%), spent <10% of their monthly income as total cost of care, while seven (21.9%), three (9.4%) and one (3.1%) spent 10-<50%, 50 to <100% and >100% of their monthly income on total cost of care, respectively.

The mean monthly cost of medicine was $10.00 ± 6.99, with a range of 1.33-30.00 dollars. The proportion of the monthly income spent on medicine ranged between 0.5 and 37.6%. The average was 8.0 ± 10.1%. Most of the patients 24 (75.0%) spent <10% of their monthly income on medicine while eight (25.0%) spent between 10 and <50% of their monthly income on medicines.

The amount of money spent on transportation by the families was between 0.53 and 16.67 dollars. The mean amount spent was $4.13 ± 4.43. The percentage of total income spent on transportation was 0.1-57.1%, with a mean of 5.4 ± 13.2%. Almost all the families, 29 (90.6%), spent <10% of the income on transportation [Table 2].
Table 2: Relationship of percentage of income spent on medicines, transport and total cost of care

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The income of families from high SEC was significantly more than those from middle and low SEC, P = 0.0001. There was no significant difference in the amount spent on medicines, transportation and total cost of care in the different SECs, P = 0.758, 0.398 and 0.694, respectively [Table 3]. However, the mean percentage of income spent on medicines and total cost of care was significantly higher in the low SEC compared with the middle or high SECs, P = 0.0095 and 0.041, respectively. The difference in the percentage of income spent on transport by families in the different SECs was not significant, P = 0.074 [Table 3]. The mean annual incomes of families in the high, middle and low SECs were 7588.57, 3797.33 and 1711.10 dollars, respectively.
Table 3: The incomes, medicines, transportation and the percentage of income spent on medicines, transportation and total care by the families

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The mean man-hours spent on clinic visitation was 7.1 ± 3.4 man-hours, with a range of 4-16 man-hours. The mean annual man-hour loss is 85.2 h, or 10.6 working days.

Outcome

All the patients are alive, and two (50.0%) of the PDA cases were ligated while one (33.3%) of those with atrioventricular canal defect (AVCD) had open heart surgery. The PDAs were ligated in the country at the University College Hospital, Ibadan, and UBTH, Benin. The PDA ligation cost an average of $4000.00 per patient while the AVCD repair was performed outside the country at a cost of $12000.00.


   Discussion Top


The mean percentage of income spent on total expenditure of 16.6% in this study is significant. More than one-third (34.4%) of the study population spent over 10% of their income on care, which is considered, by some authorities, as catastrophic health expenditure. [10],[11] This level of expenditure may lead to a cut back on other recurrent family expenditures such as feeding, clothing, housing, etc., which will affect the quality of life of the family. [10] Perhaps the family members that are most likely to be affected are the nonaffected children. It can be conjectured that their schooling, feeding and immunization will be suboptimal because the family income is diverted to care of their siblings with CHD. [11] The mean percentage of income spent on care is comparable to the value obtained (19.39%) from a similar study performed on human immunodeficiency virus (HIV) patients attending a subsidised treatment programme in the study center. [12] Although, currently, the HIV patients in the same programme have free treatment, the high cost of care however highlights the economic burden of managing chronic illnesses in Nigeria.

The families have to make two trips a month to collect their medicine refill, which is compounded fortnightly because the shelf-life of the compounded drug is 2 weeks. An average of 8% of the family income was spent on transportation. This may compromise the family's capability for transportation to work and school, leading to school absenteeism by the children. Besides, compliance to therapy is affected when parents fail to pick up the medicine refill of the children, with the attendant complications of bronchopneumonia and worsening heart failure. There is also the risk of road mishaps to, particularly, the families who travel from areas outside of Benin, the study locale. The parents will have to make frequent trips until the child is old enough to take tablets or significant fractions of tablets that will enable them to have long clinic visits. These frequent clinic visits do not only add on to the psychological/emotional stresses to the parents and children but may also engender friction in the parents' workplaces because of their frequent absences from work. [13] This is buttressed by the mean annual man-hours lost to clinic visitation. This may in turn expose the parents to job loses, a situation that will further worsen their economic situation. Previous works have demonstrated that unemployment and financial burden are contributors to the low social support experienced by the parents of children with CHD. [13],[14]

A majority of the families are from the low SEC, and they spent a significantly higher percentage of their income on care compared with the families in the high or middle SEC. Thus, they bear the brunt of the economic burden of care as has been shown in previous studies. [10],[11] They are also least likely to come up with the money for surgical intervention. It is worrisome that the mean annual incomes of the families in the high SEC in the study population did not meet the cost of surgery overseas. Only a small number of patients were able to afford surgery outside the country as the few families who had open heart surgery were sponsored by nongovernmental or governmental agencies. Although there are few centers with the capability for open heart surgery in Nigeria, their capacity is diminished by a variety of factors ranging from inadequate personnel to lack of equipments that they cannot take on the large number of patients requiring open heart surgery. [15] Thus nongovernmental organizations, such as the Save A Child Heart Nigeria (SACH) and the Kanu Heart Foundation (KHF), assist affected families to have surgery in India and Israel. [4] Most of the families are responsible for their surgery and transportation. Perhaps more government involvement at the local and state levels are needed to assist patients to have surgeries abroad. All these efforts are immediate- or medium-term solutions as only a limited number of patients can be ferried abroad for surgery. The majority of the patients will have to live with diseases or eventually die from them.

The way forward is for government through policy and legislature to strengthen the existing centers and to establish a number of other functional cardiac centers with the capability for open heart surgery/catheter intervention procedures. The cost of open heart surgery or catheter intervention procedures may not be affordable to a large number of patients as it is not cheap anywhere in the world. [15],[16] It is not covered by the National Health Insurance Scheme (NHIS) as it is established now. [17] A lot of government subsidies will be required to make the cost of surgery affordable and enable the majority of the affected patients to benefit from the centers. This will be a long-term solution. Considering that HIV/acquired immunodeficiency syndrome (AIDS) is completely subsidised for the patients enrolled in the programme, this entails the provision of expensive high-technology investigative equipments and medicines. Unlike HIV/AIDS, CHD is a noncommunicable disease and therefore may not attract as much attention because of its relatively lower prevalence; attention should however be drawn to its debilitating nature and the economic burden to the affected families of the chronic management of some of them.

In conclusion, the cost burden of managing patients with CHD who are in chronic heart failure is significant for most families. The current situation where patients are ferried abroad for surgery is inadequate as most patients cannot afford the cost. The establishment of affordable, functional cardiac centers with open heart capability is urgently needed.

 
   References Top

1.Ferencz C, Rubin JD, McCarter RJ, Brenner JI, Neill CA, Perry LW et al. Congenital heart disease. Prevalence at live birth. The Baltimore-Washington infant study. Am J Epidemiol 1985;121:31-6.  Back to cited text no. 1
    
2.Abdulla R. Tetralogy of Fallot. In Essential Pediatric Cardiology. In: Koenig P, Hijazid ZM, Zimmerman F, editors. New York: The Mc Graw-Hill companies, Inc; 2004. .p. 193-8.  Back to cited text no. 2
    
3.Gupta B, Antia AU. Incidence of congenital heart disease in Nigeria children. Brit heart J 1967;29:906-9.  Back to cited text no. 3
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5.Leblanc JG. Creating a global climate for pediatric cardiac care. World J pediatr 2009;5:89-92.  Back to cited text no. 5
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6.Sadoh WE. The natural history of ventricular septal defect in Nigerian children. South Afr J Child hlth 2010;4:16-9.  Back to cited text no. 6
    
7.Sadoh WE, Akinsete AM. Epidemiology of childhood heart failure in Benin City. Nig J Cardiol 2006;3:12-5.  Back to cited text no. 7
    
8. Arafa MA, Zaher SR, El-Dowaty AA, Moneeb DE. Quality of life among parents of children with heart disease. Health Qual Life Outcomes 2008;6:91.  Back to cited text no. 8
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9.Olusanya O, Okpere E, Ezimokhai M. The importance of socioeconomic class in voluntary fertility control in a developing country. W Afri J Med 1985;4:205-12.  Back to cited text no. 9
    
10.Kawabata K, Xu K, Carrin G. Preventing impoverishment through protection against catastrophic health expenditure. Bull World Hlth Org 2002;80:612.  Back to cited text no. 10
    
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12.Sadoh WE, Oviawe O. The economic burden to families of HIV and HIV/Tuberculosis coinfection in a subsidized HIV treatment program. J Natl Med Assoc 2007;99:627-31.  Back to cited text no. 12
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13.Connor J, Kline N, Mott S, Harris S, Jenkins K. The meaning of cost for families with congenital heart disease. J Pediatr Health Care 2010;24:318-25.   Back to cited text no. 13
    
14.Lawoko S, Soares JJ. Social support among parents of children with congenital heart disease, parents of children with other diseases and parents of healthy children. Scand J occup ther 2003;10:177-87.  Back to cited text no. 14
    
15.Eze JC, Ezemba N. Open-heart surgery in Nigeria: Indications and challenges. Tex Heart Inst J 2007;34:8-10.  Back to cited text no. 15
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16.Sokolovic E, Schmidlin D, Schmid ER, Turina M, Ruef C. Resource utilization associated with open heart surgery. Eur Heart J 2002;23:574-78.  Back to cited text no. 16
    
17.Federal Ministry of Health, Nigeria. National health insurance sheme operational guidelines. Pg 1 - 28. Found at Available from: http://www.nhis.gov.ng/index.php?option=com_content&view=article&id=92Itemid=77 [last accessed on 2010].  Back to cited text no. 17
    



 
 
    Tables

  [Table 1], [Table 2], [Table 3]


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