Objective: To assess the quality of life in patients with rheumatic heart disease. Methods: This case-control study was conducted at the Gulab Devi Chest Hospital, Lahore, Pakistan, from October 2016 to March 2017, and comprised patients with rheumatic heart disease.Convenient sampling technique was used. The 36-item short form health survey was used to collect data. The scores of several dimensions of the questionnaire were calculated and compared using appropriate statistical tests. SPSS 16 was used for data analysis.
Results: Of the 300 subjects, 150(50%) each were cases and controls. There were 45(30%) males and 105(70%) females among the cases and 63(42%) males and 87(58%) females among the controls. The affected individuals reported significant impairment not only in total score (p<0.001) but also in all its domains (p<0.05 each).
Conclusion: Rheumatic heart disease imposed a considerable burden on the quality of life.
Keywords: Rheumatic fever, Rheumatic heart disease, SF36 questionnaire, Quality of life. (JPMA 68: 370; 2018)
Acute rheumatic fever, an inflammatory disease of the heart, joints, central nervous system and subcutaneous tissue, develops after a throat infection by one of the group A b haemolytic streptococci. Rheumatic heart disease (RHD) is usually turned into a chronic state causing congestive heart failure, stroke, endocarditis and death.1 While the incidence of rheumatic fever and RHD has been decreased in developed countries since the early 20th century, they are still major causes of morbidity and mortality in young age in the developing countries, including Pakistan.2,3 It is approximated that there are around 15 million cases of RHD worldwide, with 470,000 newly diagnosed cases and 233,000 deaths each year.4 The prevalence of RHD is more in females compared to the males, because women are house bound and therefore are more likely to be affected by overcrowding.2 RHD is one of the major causes of early death and disability in Pakistan. The prognosis of patients with RHD is very poor. The beginning of this chronic state usually results in devastating symptoms and physical presentations, all taking part in poor quality of life in these patients.5
Quality of life (QoL) is an approximation of remaining life free of deformity, disability or handicap. Although it has widely been explained that all chronic diseases have poor impact on quality of life of patients, each disease has its own characteristics.6 For example, cancer patients have high levels of anxiety and depression, especially in the months immediately after the diagnosis. QoL consists of two parts. The first part is a physical facet which consists of such things as general health, diet, mental health as well as pain and disease. The second part is psychological in nature and consists of such things as stress, worry, pleasure and other positive or negative emotional states.6 Chronic rheumatic disease causes stress and anxiety in patients, with increased risks of evolving physical and psychosocial impairments.7 These include not only pain and fatigue but also difficulties with activities of daily living, ranging from basic household chores to more complex tasks such as paid employment and social roles, e.g. childbearing. Significant progresses in the medical and surgical care have been shown to have good impacts on quality of life in RHD patients, as well as to significantly prolong survival and reduce hospitalisation rates.8 The number of studies conducted on quality of life in RHD is scarce and data in a developing country like Pakistan is not available. The current study was undertaken to describe QoL in RHD and to highlight the need to address physical and psychological functioning to ultimately improve QoL of individuals.
Subjects and Methods
This case-control study was conducted at the cardiology department of Gulab Devi Chest Hospital, Lahore, Pakistan, from October 1, 2016, to March 31, 2017, and comprised consecutive patients of either gender admitted with RHD. Controls were the healthy attendants of the patients, had no history of rheumatic fever or RHD, and were matched cases for age. Patients with a history of ischaemic, congenital or non-RHDs were excluded. Convenient sampling technique was used to collect data and the 36-item Short Form Health Survey (SF36) questionnaire was used for the purpose (Annexure). After obtaining approval from the institutional ethics committee and informed verbal consent from the patients, the subjects were asked about their socio-demographic profile. Initially, there was an attempt at using a self-administration method, but this strategy resulted in a high rate of unanswered questions because of the language problem; thus it was decided to conduct direct interviews which lasted 15-20 minutes. The interviewees did not have difficulties in understanding the questions.
Both descriptive and inferential statistical analyses were done using SPSS 16. Qualitative data was presented in the form of frequencies along with percentages. Quantitative data was presented in the form of mean, standard deviation, median and interquartile range (IQR) by simple descriptive analysis. We calculated the total score and also the score of each domain as per the scoring system used in literature.9 The normality of each domain was checked using one sample Kolmogorov-Smirnov test. All data was non-normally distributed, and as parametric tests could not be applied on non-normal data, so it was analysed using Mann-Whitney U test. Qualitative data like gender was analysed using chi-square test.
Of the 300 subjects, 150(50%) each were cases and controls. There were 45(30%) males and 105(70%) females in the experimental group and 63(42%) males and 87(58%) females in the control group (p=0.030). The mean age of cases was 33.77±12.19 years and that of the controls was 34.66±12.38 years (p=0.689) (Table-1).
When the data was checked for assumptions using Kolmogorov-Smirnov Z-test, it showed that the data was non-normally distributed and non-parametric test was applied (Table-2).
The patients had significantly reduced scores in all QoL aspects compared with the controls, indicating that there was a relationship between the two. The affected individuals reported significant impairment not only in total score (p<0.001) but also in all domains, including general health (p<0.001), physical functioning (p<0.001), role functioning/physical (p<0.001), role functioning/ emotional (p<0.001), emotional well-being (p=0.001), vitality (p<0.001), bodily pain (p<0.001), social functioning (p=0.004) and health change (p<0.001). The most significant differences were observed in total score (1307.90 vs. 2210.96), general health subscale (209.60 vs. 303.33), physical functioning (364.00 vs. 734.67), role functioning/physical (52.66 vs. 234.00), role functioning/ emotional (70.00 vs. 135.33), vitality (132.13 vs. 220.93) and bodily pain (73.90 vs. 132.20). The lowest differences although significant were seen for emotional well-being (240.93 vs. 282.00), social functioning (101.33 vs. 122.00) and health change (63.33 vs. 46.50) (Table-3).
Literature on QoL assessment in patients with RHD is rare despite the availability of questionnaires developed and validated to assess individuals with chronic diseases. The current study is the first to the authors\\\' knowledge that has objectively examined QoL among patients with RHD in Pakistan. RHD, mostly neglected by media and government, is a major burden in developing countries like Pakistan2,10-12 where it is one of the most common causes of the cardiovascular morbidity and mortality in young people.13 Patients diagnosed with the disease experience severe difficulties due to complications caused by this disease such as atrial fibrillation,14 stroke,15 and consequently often have problems in maintaining normal daily activities.
The present data demonstrated a significant relationship between RHD and poor QoL in mostly young people. Our study showed that the likelihood of an RHD patient having poor QoL was greater than a healthy individual (p<0.001). Comparison of the present study sample with a sample of patients with rheumatic fever showed a correlative pattern of deterioration.7 Although heart disease employs a significant impact on physical health from the medical point of view,16 most studies on quality of life also reported low scores in the psychosocial aspects,17,18 as were found in the present study. Low scores in the emotional dimension show the suffering of patients from their chronic illness.18,1920 Adolescents with severe heart disease reported higher level of anxiety and depression as compared to the age-matched healthy controls.19 Study on QoL in adults with congenital heart diseases showed that inoperable conditions had a trend towards a poorer quality of life.2122 Lane et al.23 showed that arthritis and RHD negatively affected several sides in QoL, such as the work, and home activities compared to individuals without chronic disease; these findings are also confirmed by our study. Regarding cognitive problems, it is stated that individuals with rheumatic fever may exhibit profound reversible cognitive problems, such as poor attention and concentration. .24 Khalil et al. .25 explained that patients with chronic RHD had intellectual decline. Bodily pain is one of the major manifestations of rheumatic fever that lead to sleeping difficulties in patients, .12 as were found in the present study. QoL was assessed using a well-validated tool, the SF36 health questionnaire. .26,27 SF36 has been used many times among different patients and in many countries; however, this was the first time that this tool was used in Pakistan for examining the QoL in RHD patients, which is not a feature of comparable studies and so is a novel work, which could augment and intensify the outcomes of this study.
The current study had a few limitations as well. The sample size was small compared to the disease burden in Pakistan. Moreover, we used the English version of SF36 questionnaire and more than 90percent of our patients could not understand it and were unable to answer, so we had to take direct interviews afterwards. A better option would be to administer the Urdu version of the questionnaire. It would be easier for the respondents to understand and answer the questions without any difficulty.
Subjective health-related QoL in RHD patients was significantly impaired and was much worse than the controls. Rheumatic heart disease imposes a substantial burden on QoL. The burden can be reduced through prevention, rehabilitation and other disease management strategies. By using the SF36 questionnaire in the beginning of the follow-up, physicians can define their QoL profile better. Psychotherapy sessions can also help in improving QoL.
Conflict of Interest: None.
Source of Funding: None.
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