Assessment of social and economic impact of healthcare with homoeopathy for haemophilia in cognizance with patients’ perspective: a cross-sectional survey

INTRODUCTION

Haemophilia a rare genetic bleeding disorder imposes not only clinical burden on patients with haemophilia but also an economic burden on family and society through in pocket and out of pocket expenditure of the disease management.^1-4 Besides affecting the individual on physical plane, the disease effects on psychological level as well and the high cost of its management adds to its severity.^5-7 With the advent in modern science this fatal disease is now transformed into a well-managed disease. The treatment cost of haemophilia varies based on disease severity and its complications. The economic burden of the disease can be measured in terms of in-pocket expenditure of the disease, which includes direct treatment cost i.e. cost of antihaemophilic factor, cost of hospitalization and cost of medical and surgical procedures. PWH with severe deficiency of Factor VIII or IX may bleed 2-3 times a week in a growing child.⁸ In India, a developing country 80% of PWH resides in rural area and do not have access to health care facilities and cannot afford to have factor replacement even on demand basis. Thus, prophylaxis treatment for such PWH is beyond consideration. Acute bleeding into the joints is the most common presentation and the repeated bleeding into the joints is the cause of morbidity in haemophilia. Various complications in Haemophilia include formation of psuedocyst in joints, compression of the nerve etc. Such complication further increases the cost of treatment. Some serious complication of the factor replacement therapy include infection with hepatitis C virus, HIV and development of antibodies to the deficient clotting factor i.e. Inhibitor state. A study conducted at NIIH by Pinto et al reported 6.07% PWH positive for inhibitor.⁹ Also, it is estimated that 25-30% of severe haemophilia A patients develop inhibitor and the incidence is 3-5% in severe haemophilia B patients.¹⁰ Total annual cost of treatment for haemophilia A patient with inhibitor is 4.8 times higher than for a patient without inhibitor.¹¹ Out of pocket expenditure: The out of pocket expenditure of the disease is also an important measure which contributes to increase the economic burden of the disease. This is related with health-related quality of life which affects the productivity of PWH at work place.^12-14 The of out-of-pocket expenditure can also be measured by days of absenteeism of PWH or family members from the work place, loss of wages on account of hospital visits. In a developing country like India where 80% of haemophiliacs reside in remote villages are associated with the occupation of farming and works on daily wages. This rare bleeding disease is not covered by any health insurance policies as well leading to increase economic burden on PWH and society. Also, India is home to various traditional medicines like Ayurveda and Homoeopathy. Modern interventions of factor replacement therapy are effective in episodes of haemarthrosis but does not prove beneficial in reducing the recurrence of bleeding episodes. In such circumstances prophylactic factor infusion is recommended for the PWH. The prophylactic treatment by many PWH is unendurable on account of its high cost. Homoeopathic medicines have been proved effective in reducing the bleeding episodes in PWH as well as managing the acute bleeding episodes.^15-25 In such scenario the homoeopathic medicines in reduction of cost of care in PWH needs to be evaluated.

METHODS

Study setting

Homoeopathy in Haemophilia is a self-governing Research Organization providing treatment to PWH on charity basis since December 2007. The project started at single center (Nashik, Maharashtra, India). Till date, it has expanded its service to Mumbai, Amravati, Surat and Nagpur. The data for the present study was collected from 478 PWH from Nashik (277), Mumbai (73), Amravati (42), Surat (35) and Nagpur (51) centers during the period between January 2017 to June 2017.

Method

Samples were collected using simple random sampling. A questionnaire was formed to gain the information regarding type of the disease, cost of the management of the disease by conventional therapy and with homoeopathic intervention.

RESULTS

Outcomes of the survey

Part A: preliminary information of patient

Distribution of patients seeking treatment for haemophilia at different chapters

Total 478 patients were registered for haemophilia treatment under chapter Nashik, Mumbai, Amravati, Surat and Nagpur. 57.9% patients registered and seek treatment in Nashik (n=277) chapter, 15.3% in Mumbai (n=73), 10.7% in Nagpur (n=51), 8.8% in Amravati (n=42) and 7.3% in Surat (n=35).

Distribution of age and sex of patients seeking treatment for haemophilia at different chapters

Out of 478 registered haemophilia patients under different chapters, 467 were male haemophilia patients and 11 were female haemophilia patients. 88.06% haemophilia patients belonged to age group between 1 to 30 years (n=421) of which 38.70% (n=185) were 11 to 20 years, 30.12% (n=144) were 1 to 10 years and 19.24% (n=92) were 21 to 30 years.4.59% haemophilia patients belonged to age group between 31 to more than 61 years (n=57) of which 7.32% (n=35) were 31 to 49 years, 2.09% (n=10) were 41 to 50 years, 1.88% (n=9) were 51 to 60 years and 0.62 (n=3) were more than 61 years age group.

Distribution of marital status of patients seeking treatment for haemophilia at different chapters

84.9% (n=406) haemophilia patients were unmarried, 14.6% (n=70) were married and 0.4% (n=2) were separated.

Distribution of educational status of patients seeking treatment for haemophilia at different chapters

25.5% (n=122) haemophilia patients completed primary education, 23.8% (n=114) completed secondary education, 14% (n=67) completed graduation, 11.5% (n=55) passed standard 12^th, 10.7% (n=51) passed standard 10^th, 4% (n=19) completed diploma or related courses, 2.7% (n=13) completed post-graduation, 3.1% (n=15) did not complete schooling, 0.8% (n=4) completed masters or and higher education. 3.8% (n=18) were not able to recognize their educational status.

Distribution of occupation of haemophilia patients seeking treatment at different chapters

66.5% (n=318) haemophilia patients were students, 13% (n=62) patients were employed, 6.9% (n=33) patients were unemployed, 6.7% (n=32) were doing self-business, 0.6% (n=3) were home-makers, 1.7% (n=8) were working on daily wages, 1% (n=5) were farmer, 0.2% (n=1) were retired and 3.3% (n=16) were not applicable for the question.

Distribution of annual family income of haemophilia patients seeking treatment at different chapters

32.5% (n=153) haemophilia patients’ annual family income was between Rs.50,001 to Rs.1.00 lakh, 20.3% (n=97) haemophilia patients annual family income was below Rs.50,000. 18.6% (n=89) patients annual family income was between Rs.1.00 Lakh to Rs.1.50 lakhs. 29% (n=139) of haemophilia patients annual family income were between Rs.1.50 lakh Rs.3.00 lakh and above.

Distribution social status of haemophilia patients seeking treatment at different chapters

61.9% (n=296) haemophilia patient possess orange ration card, 25.3% (n=121) haemophilia patient possess yellow ration card, 12.1% (n=58) haemophilia patient possess white ration card and 0.6% (n=3) patients didn’t have any ration card.

Distribution of possession of medical insurance by haemophilia patients seeking treatment at different chapters

Only 11.08% (n=58) patient with haemophilia disease possessed medical health insurance. 2 patients informed about coverage of haemophilia under medical health insurance.

Part B: details about disease suffering

Distribution of type of haemophilia among patients seeking treatment at different chapters

63% (n=301) haemophilia patient were suffering from haemophilia A severe, 18.4% (n=88) were haemophilia A moderate sufferers, 5.9% (n=28) were haemophilia B severe sufferers, 5% (n=24) were haemophilia A mild, 3.8% (n=18) were haemophilia B moderate sufferers, 2.7% (n=13) suffers from rare factor deficiencies, 0.8% (n=4) were haemophilia B mild and 0.4% (n=2) were VWD sufferers.

Distribution of duration of illness of haemophilia patients seeking treatment at different chapters

97.9% (n=468) haemophilia patients were having illness more than one year and 2.1% (n=10) were suffering from less than one year.

Distribution of type of co-morbidity of haemophilia patients seeking treatment at different chapters

29.1% (n=139) of haemophilia patients were suffering from co morbidity. 6.3% (n=30) were suffering from dental problems requiring surgical extraction. 2.5% (n=12) were suffering from kidney related abnormalities, 1.9% (n=9) suffering from obesity/overweight, 1.5% (n=7) were suffering from chronic hepatitis C, 1.5% (n=7) suffering from hypertension, 0.4% (n=2) from cardiovascular disease and 0.8% (n=4) suffering from diabetes. 75.54% (n=105) haemophilia patients were suffering from co-morbidities (n=139) require regular treatment for the co-morbid conditions.

Part C: direct cost incurred

Direct cost incurred by the patients is represented in Tables 6-8.

Part D: indirect cost incurred

Indirect cost incurred by the patients is represented in Tables 9.

Part E: about therapy satisfaction

Distribution of therapy satisfaction is shown in Table 10.

DISCUSSION

Haemophilia is a rare genetic bleeding disorder, managing the condition costs money, which places a financial strain on families and society in addition to clinical burdens on haemophilia sufferers. The disease not only affects the person physically, but also psychologically, and the expensive cost of its treatment increases the severity of the condition. Total 478 patients were registered for Haemophilia treatment under chapter Nashik, Mumbai, Amravati, Surat and Nagpur. 57.9% patients registered and seek treatment in Nashik (n=277) chapter, 15.3% in Mumbai (n=73), 10.7% in Nagpur (n=51), 8.8% in Amravati (n=42) and 7.3% in Surat (n=35) as described in result in Part A a) Out of 478 registered haemophilia patients under different chapters, 467 were male haemophilia patients and 11 were female haemophilia patients. 88.06% haemophilia patients belonged to age group between 1 to 30 years (n=421) of which 38.70% (n=185) were 11 to 20 years, 30.12% (n=144) were 1 to 10 years and 19.24% (n=92) were 21 to 30 years. 4.59% haemophilia patients belonged to age group between 31 to more than 61 years (n=57) of which 7.32% (n=35) were 31 to 49 years, 2.09% (n=10) were 41 to 50 years, 1.88% (n=9) were 51 to 60 years and 0.62 (n=3) were more than 61 years age group as described in Part A b) 84.9% (n=406) haemophilia patients were unmarried, 14.6% (n=70) were married and 0.4% (n=2) were separated as described in Part A c) 25.5% (n=122) haemophilia patients completed primary education, 23.8% (n=114) completed secondary education, 14% (n=67) completed graduation, 11.5% (n=55) passed standard 12^th, 10.7% (n=51) passed standard 10^th, 4% (n=19) completed diploma or related courses, 2.7% (n=13) completed post-graduation, 3.1% (n=15) did not complete schooling, 0.8% (n=4) completed masters or and higher education. 3.8% (n=18) were not able to recognize their educational status as described in Part A d) 66.5% (n=318) haemophilia patients were students, 13% (n=62) patients were employed, 6.9% (n=33) patients were unemployed, 6.7% (n=32) were doing self-business, 0.6% (n=3) were home-makers, 1.7% (n=8) were working on daily wages, 1% (n=5) were farmer, 0.2% (n=1) were retired and 3.3% (n=16) were not applicable for the question as described in Part A e) 32.5% (n=153) haemophilia patients’ annual family income was between Rs.50,001 to Rs.1.00 Lakh, 20.3% (n=97) haemophilia patients annual family income was below Rs.50,000. 18.6% (n=89) patients annual family income was between Rs.1.00 lakh to Rs.1.50 lakhs. 29% (n=139) of haemophilia patients annual family income were between Rs.1.50 Lakh Rs.3.00 lakh and above as described in Part A f) 61.9% (n=296) haemophilia patient possess orange ration card, 25.3% (n=121) haemophilia patient possess yellow ration card, 12.1% (n=58) haemophilia patient possess white ration card and 0.6% (n=3) patients didn’t have any ration card as described in Part A g) Only 11.08% (n=58) patient with haemophilia disease possessed medical health insurance. 2 patients informed about coverage of Haemophilia under medical health insurance as described in Part A h) 63% (n=301) haemophilia patient were suffering from haemophilia A severe, 18.4% (n=88) were haemophilia A moderate sufferers, 5.9% (n=28) were haemophilia B severe sufferers, 5% (n=24) were haemophilia A mild, 3.8% (n=18) were haemophilia B moderate sufferers, 2.7% (n=13) suffers from rare factor deficiencies, 0.8% (n=4) were haemophilia B mild and 0.4% (n=2) were VWD sufferers as described in Part B a) 97.9% (n=468) haemophilia patients were having illness more than one year and 2.1% (n=10) were suffering from less than one year as described in Part B b) 29.1% (n=139) of haemophilia patients were suffering from co morbidity. 6.3% (n=30) were suffering from dental problems requiring surgical extraction. 2.5% (n=12) were suffering from kidney related abnormalities, 1.9% (n=9) suffering from obesity/overweight, 1.5% (n=7) were suffering from chronic hepatitis C, 1.5% (n=7) suffering from hypertension, 0.4% (n=2) from cardiovascular disease and 0.8% (n=4) suffering from diabetes. 75.54% (n=105) haemophilia patients were suffering from co-morbidities (n=139) require regular treatment for the co-morbid conditions as described in Part B c) 43.72% (n=209) family members suffering from haemophilia of which 10 family members had positive inhibitor status as described in Part B (Table 1). 70.29% (n=336) haemophilia patient had suffered from trauma/accident conditions of which 87.5% (n=294) required immediate emergency factor infusion as described in Part B (Table 2). 98.98% (n=291) patient suffering from haemophilia required between 1 to 100 factors infusion during emergency. 0.68% (n=2) required more than 501 factor infusion and 0.34% (n=1) required no infusion of factor during emergency condition described in Part B (Table 3). 23% (n=110) haemophilia patients or family members had direct expenses up to Rs.10,000 for management of emergency traumatic conditions. 13% (n=62) had between Rs.41000 to Rs.80,000, 11.1% (n=53) had between Rs.11,000 to Rs.20,000, 7.3% (n=35) had between Rs.31000 to Rs.40,000 and 7.1% (n=34) had more than Rs. 81,000 direct expenses for management of trauma/accident condition as described in Part B (Table 4). 30.8% (n=147) haemophilia patients managed their bleeding occasionally with homoeopathy medicine, 66.3% (n=317) every time and 2.9% (n=14) rarely. 54.2% (n=259) haemophilia patients managed their bleeding occasionally with tranexamic acid, 18.4% (n=88) every time and 27.4% (n=131) rarely. 10.3% (n=49) haemophilia patients managed their bleeding occasionally with cold fomentation, 87.7% (n=419) every time and 2.15% (n=10) rarely. 21.8% (n=104) haemophilia patients managed their bleeding occasionally with FFP, 0.6% (n=3) every time, 42.3% (n=202) rarely and 35.5% (n=169) not taken FFP as described in Part B (Table 5). 94.1% (n=450) haemophilia patient were buying factor from society of which 3.3% (n=16) were buying for each bleed episode. Out of 478 haemophilia patients 90.58% (n=433) patients infused factor between1 to 100. 4.82% (n=23) patients infused more than 100 factors till date. 4.69% (n=22) patients not yet infused any factor. 41.2 % (n=197) haemophilia patient paying between Rs. 2501 to Rs.5000 for society for single factor, 27.6% (n=132) paying up to Rs.2500, 17.4% (n=83) paying between Rs.5001 to Rs.7500, 11.1% (n=53) paying between Rs.7501 to Rs.15000, 2.7% (n=13) paying above Rs.15001.

Only 2.3% (n=11) haemophilia patients were getting any sponsorship from non-government organization (NGO). 10.7% (n=51) haemophilia patient were paying to nurse and or doctors for each factor infusion. 64.70% (n=33) paying between Rs. 101 to Rs.200, 29.41% (n=15) paying less than Rs.100 and 5.88% (n=3) were paying more than Rs.201.

89.5% (n=428) haemophilia patient were paying up to Rs.500 for travelling to society for buying a single factor. 8.4% (n=40) were paying between Rs.501 to Rs.1000 and 2% (n=10) were paying more than Rs.1001 for each visit to society as described in Part C (Table 6). 44.8% (n=214) haemophilia patient were infusing factor from government civil hospital only during emergency bleeding condition. 42.1% (n=201) were infusing for each bleed episode. 70.6% (n=293) haemophilia patients complained about non availability of factor in government civil hospital during emergency bleed. 77.6% (n=293) haemophilia patient paid Rs.10 for drawing case paper from civil hospital and 22.4% (n=93) paid Rs.5.

86.03% (n=357) haemophilia patient were paying up to Rs.500 for travelling to civil hospital. 12.53% (n=52) were paying between Rs.501 to Rs.1000 and 1.44% (n=6) were paying more than Rs.1001 for each visit to society as reported in Part C (Table 7). 478 haemophilia patients were taking homoeopathy treatment in different chapters as mentioned in Part A of result. 77.40% (n=370) haemophilia patient didn’t require to pay any rupees for homoeopathy treatment. 0.42% (n=2) paying less than Rs.100. 22.17% (n=106) haemophilia patient were paying more than Rs. 100 for homoeopathy treatment. 99.58% (n=476) haemophilia patient experienced reduction in factor infusion after starting of homoeopathy treatment. 19.5% (n=93) haemophilia patient were not required single factor during homoeopathy treatment. 19.9 % (n=95) required factor occasionally. 17.4% (n=83) experienced 75% and more reduction in factor infusion after starting of homoeopathy treatment. 33.3% (n=159) experienced 50% and more reduction, 9.6% (n=46) experienced 25% and more reduction in factor infusion. 0.4% (n=2) haemophilia patient not experienced any change after homoeopathy treatment initiation.

77.82% (n=372) haemophilia patient were infused factor below 100 after initiation of Homoeopathy treatment. 22.18% (n=106) haemophilia patient didn’t require single factor after homoeopathy treatment. 98.3% (n=470) haemophilia patient experienced reduction in healing time since homoeopathy treatment started. 69.9% (n=334) experienced effectiveness of homoeopathy medicine in open acute bleeds.

79.5% (n=380) haemophilia patient were paying up to Rs.500 for travelling to homoeopathy haemophilia centres. 12.6 % (n=60) were paying between Rs.501 to Rs.1000. 7.9% (n=38) were paying more than Rs.1001 for each visit to homoeopathy haemophilia centers as described in Part C (Table 8). 96% (n=459) haemophilia patient loss their wages below Rs.500 per day during suffering, 2.1% (n=10) loss wage between Rs.501 to Rs.1000 and 1.9% (n=9) loss wages above Rs.1001.

84.1% (n=402) haemophilia patients care giver/attendee loss their wages below Rs.500 per day during management, 9.2% (n=44) loss wage between Rs.501 to Rs.1000 and 6.7% (n=32) loss wages above Rs.1001.

94.56% (n=452) haemophilia patients mother loss their 24 hrs for management/care giving and 0.21% (n=1) haemophilia patients mother loss their more than 24 hrs for management/care giving. We calculated the loss of mother’s time in monetary value. Each patients’ mother loss approximately Rs. 433.86 per day as reported in Part D (Table 9). 56% (n=268) haemophilia patients benefitted with homoeopathy treatment with SOS use of factor, 28% (n=132) experienced homoeopathy is beneficial therapy and 16% (n=78) were experienced conservative management. 95.6% (n=457) haemophilia patient were experienced satisfaction with homoeopathy treatment. 95.2% (n=455) haemophilia patient were said homoeopathy is most economic therapy, 1.3% (n=6) conservative management and 3.6% (n=17) did not acknowledge anything as described in Part E (Table 10).

In developing nations, like India, Bangladesh, Pakistan, etc., where the cost of the disease is the fundamental concern for the family and society and imposes an economic burden on the nation, are capable of carrying out this kind of study as it reduces the cost of care and burden of high-cost management. In comparison to other haemophilic patients, the patients who used add-on homoeopathy reported a decreased and fewer requirement for factor infusion. Enhancing health outcomes and possibly lowering treatment costs for the government, the patients, and their families are two benefits of integrating add-on homoeopathy with contemporary management²⁶.It is a challenging task to carry out such studies in developed nations where the cost of the disease management is not an issue.

CONCLUSION

This survey conducted from the time period of January 2017 to June 2017 assessed the social and economic impact of healthcare in haemophilia from patient’s perspective. It was found that maximum patient belonged to haemophilia A, severe category with associated co-morbidities. Economically homoeopathic therapy was found to reduce the cost of care and burden of high-cost management.

ACKNOWLEDGEMENTS

Authors would like to thank all the respondents who participated in the study. We deeply acknowledge the sincere efforts of volunteers of homoeopathy in haemophilia who helped in collection of data.

Funding: No funding sources

Conflict of interest: None declared

Ethical approval: The study was approved by the Institutional Ethics Committee

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