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pharmacoepidemiology and drug safety 2002; 11: 671–676 Published online 1 November 2002 in Wiley InterScience (www.interscience.wiley.com). DOI: 10.1002/pds.782 ORIGINAL REPORT Patterns and perceptions of complementary and alternative medicine (CAM) among leukaemia patients visiting haematology clinic of a north Indian tertiary care hospital M. Gupta 1 , N. Shafiq 1 , S. Kumari 2 and P. Pandhi 1 * 1 Department of Pharmacology, Postgraduate Institute of Medical Education and Research, Chandigarh-160 012, India 2 Department of Internal Medicine, Postgraduate Institute of Medical Education and Research, Chandigarh-160 012, India SUMMARY Purpose The use of complementary and alternative medicine (CAM) in cancer treatments is widespread with substantial number of patients deserting conventional cancer therapies in favour of unproven methods. The present study aimed at dis- covering the prevalence of use of CAM cancer therapies in leukaemia patients visiting haematology clinic of a north Indian tertiary care hospital. Methods 533 consecutive leukaemia patients were interviewed. Information was gathered about patients’ demographics, types of CAM taken, sequence of seeking CAM and conventional medicine, sources of recommendation, reasons of opting for CAM, and areas of satisfaction and dissatisfaction associated with the use of CAM. Patients were also asked if they had informed their doctor about CAM use. Results Prevalence of CAM use in leukaemia patients was found to be 56.6%. Ayurveda was the most commonly used CAM (33%). Most of the patients sought conventional medicine first, followed by CAM therapies. Fifty-two percent of the patients opted for CAM hoping for a miracle cure and 51% were dissatisfied with these therapies. Family members and neighbours constituted major source of recommendation of CAM therapy. Only 3.8% of the patients had informed their doctors about CAM use. Conclusion A sizeable percentage of patients receiving conventional treatment for leukaemia also use CAM therapies. Clinicians should not underestimate the value of hopeful attitude in their management of leukaemia patients and ought to be conversant with popular forms of CAM cancer therapies. Copyright # 2002 John Wiley & Sons, Ltd. key words — complementary and alternative medicine (CAM); leukaemia; conventional anticancer drugs; prevalence INTRODUCTION Complementary and alternative medicine (CAM) is used by 25–50% of general population of industria- lized nations. 1,2 This increasingly popular and accepted field has an impact on every facet of health care system and all specialities of medicine including oncology. The use of cancer treatments without pro- ven benefits has become a major public health issue. A substantial number of patients have deserted poten- tially curative conventional cancer therapy in favour of CAM. 3 The practitioners of CAM cancer therapies offer a better quality of life through the use of ‘non- toxic’ alternatives to the ‘cutting, burning and poison- ing’ of conventional cancer care. 4 The reasons for CAM’s present popularity are most certainly related to social and cultural context. 5 In cases of severe illness, the hope to ‘leave no stone unturned’ is a powerful motivator. This renders cancer patients prime candidates for CAM use. 6 Received 7 June 2002 Copyright # 2002 John Wiley & Sons, Ltd. Accepted 24 September 2002 *Correspondence to: Dr Mrs P. Pandhi, Department of Pharmacol- ogy, Postgraduate Institute of Medical Education and Research, Chandigarh-160 012, India. Tel: 0172-747585, Ext. 556, 279. Fax: 0172-744401, 745078. E-mail: [email protected]

Patterns and perceptions of complementary and alternative medicine (CAM) among leukaemia patients visiting haematology clinic of a north Indian tertiary care hospital

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Page 1: Patterns and perceptions of complementary and alternative medicine (CAM) among leukaemia patients visiting haematology clinic of a north Indian tertiary care hospital

pharmacoepidemiology and drug safety 2002; 11: 671–676Published online 1 November 2002 in Wiley InterScience (www.interscience.wiley.com). DOI: 10.1002/pds.782

ORIGINAL REPORT

Patterns and perceptions of complementary and alternativemedicine (CAM) among leukaemia patients visitinghaematology clinic of a north Indian tertiary care hospital

M. Gupta1, N. Shafiq1, S. Kumari2 and P. Pandhi1*

1Department of Pharmacology, Postgraduate Institute of Medical Education and Research, Chandigarh-160 012, India2Department of Internal Medicine, Postgraduate Institute of Medical Education and Research, Chandigarh-160 012, India

SUMMARY

Purpose The use of complementary and alternative medicine (CAM) in cancer treatments is widespread with substantialnumber of patients deserting conventional cancer therapies in favour of unproven methods. The present study aimed at dis-covering the prevalence of use of CAM cancer therapies in leukaemia patients visiting haematology clinic of a north Indiantertiary care hospital.Methods 533 consecutive leukaemia patients were interviewed. Information was gathered about patients’ demographics,types of CAM taken, sequence of seeking CAM and conventional medicine, sources of recommendation, reasons of optingfor CAM, and areas of satisfaction and dissatisfaction associated with the use of CAM. Patients were also asked if they hadinformed their doctor about CAM use.Results Prevalence of CAM use in leukaemia patients was found to be 56.6%. Ayurveda was the most commonly usedCAM (33%). Most of the patients sought conventional medicine first, followed by CAM therapies. Fifty-two percent of thepatients opted for CAM hoping for a miracle cure and 51% were dissatisfied with these therapies. Family members andneighbours constituted major source of recommendation of CAM therapy. Only 3.8% of the patients had informed theirdoctors about CAM use.Conclusion A sizeable percentage of patients receiving conventional treatment for leukaemia also use CAM therapies.Clinicians should not underestimate the value of hopeful attitude in their management of leukaemia patients and oughtto be conversant with popular forms of CAM cancer therapies. Copyright # 2002 John Wiley & Sons, Ltd.

key words— complementary and alternative medicine (CAM); leukaemia; conventional anticancer drugs; prevalence

INTRODUCTION

Complementary and alternative medicine (CAM) isused by 25–50% of general population of industria-lized nations.1,2 This increasingly popular andaccepted field has an impact on every facet of healthcare system and all specialities of medicine including

oncology. The use of cancer treatments without pro-ven benefits has become a major public health issue.A substantial number of patients have deserted poten-tially curative conventional cancer therapy in favourof CAM.3 The practitioners of CAM cancer therapiesoffer a better quality of life through the use of ‘non-toxic’ alternatives to the ‘cutting, burning and poison-ing’ of conventional cancer care.4

The reasons for CAM’s present popularity are mostcertainly related to social and cultural context.5 Incases of severe illness, the hope to ‘leave no stoneunturned’ is a powerful motivator. This renders cancerpatients prime candidates for CAM use.6

Received 7 June 2002Copyright # 2002 John Wiley & Sons, Ltd. Accepted 24 September 2002

* Correspondence to: Dr Mrs P. Pandhi, Department of Pharmacol-ogy, Postgraduate Institute of Medical Education and Research,Chandigarh-160 012, India. Tel: 0172-747585, Ext. 556, 279. Fax:0172-744401, 745078. E-mail: [email protected]

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The issue of the use of CAM therapies for cancerhas been addressed in few studies. A substantial pro-portion of cancer patients have been found to useCAM therapies. In 1984, Cassileth reported that13% of cancer patients in United States receiving con-ventional cancer therapy were also using CAM treat-ments.4 A literature search of 26 surveys from 13countries revealed average prevalence of CAM cancertherapies as 31.4%.7 The most commonly used thera-pies were metabolic therapy, diet therapy, megavita-min, mental imagery, spiritual healing, and immunetherapy. However, these studies did not specificallyexamine leukaemia patients. Also, data are unavail-able with regard to patterns of use of CAM cancertherapies in developing nations.

The present study examined the patterns and per-ceptions of CAM therapies among leukaemia patientsvisiting the haematology clinic of Postgraduate Insti-tute of Medical Education and Research (PGIMER),Chandigarh, a tertiary care hospital in north India.

MATERIALS AND METHODS

533 consecutive patients who visited haematologyclinic of Internal Medicine outpatient departmentfrom May 2001 to October 2001 were interviewed.All these patients had leukaemia and were receivinganticancer drugs.

The interview began with taking complete historyof the disease and anticancer drugs used. Patients werethen asked about the use of CAM in the past and pre-sent. They were explained the meaning of CAM withexamples. The users were asked about the details ofCAM used and which treatment was sought first(CAM or conventional or both simultaneously),source of information or persons recommendingCAM treatment, and the reasons for shifting from con-ventional anticancer drugs to CAM therapies. Theywere then enquired about their perceptions of CAMtherapies, whether they were satisfied or dissatisfiedafter taking CAM and why. Lastly, they were askedif they had informed their doctors about the CAM.

The frequency of response to various questions wasexpressed as percentage.

RESULTS

Demographic characteristics

Out of the 533 patients interviewed, 302 admitted tousing CAM, 231 patients denied using any medicineother than conventional anticancer drugs prescribedto them in the hospital. The conventional therapy

was not completely abandoned by any patient. CAMwas used by males (59.9%) more often than females(40%). The use of CAM was seen among all agegroups. Majority of users belonged to rural areas,were either illiterate or educated till primary leveland had annual income of less than Rs. 25 000 pa(Table 1).

Prevalence and pattern

Most patients sought conventional medicine (61%)before adding CAM therapies. Twenty-eight percenttook CAM first and 11% started both treatmentssimultaneously (Figure 1). Ayurveda was the mostfrequently used form of CAM, followed by herbal,homeopathy, spiritual healing, diet therapy and mega-vitamins (Table 2).

Perceptions of patients about CAM

The most common reason cited for opting CAM treat-ment was ‘hope for a miracle cure’ (52%). Other rea-sons put forward were adverse drug reactions withconventional treatment, polytherapy, and cost of con-ventional therapy and a need for better personal atten-tion (Figure 2).

Thirty-three percent of patients were satisfied withCAM, 51% were dissatisfied and 10% were neutral.Those satisfied with CAM therapies described benefitsas being both mild physical and psychological.

Table 1. Demographic characteristics

Conventional only ConventionalþCAM(n¼ 231) (n¼ 302)

Number (%) Number (%)

Size of communityUrban 200 (86.5) 120 (39.7)Rural 31 (13.4) 182 (60.2)

SexMale 132 (57.1) 181 (59.9)Female 99 (42.8) 121 (40.0)

Age18–25 39 (16.8) 42 (13.9)26–35 44 (19) 50 (16.5)36–50 94 (40.6) 104 (34.4)>50 54 (23.3) 106 (35)

EducationIlliterate 20 (8.6) 102 (33.7)Primary 32 (13.8) 100 (33.1)Secondary 19 (8.2) 90 (29.8)Tertiary 60 (25.9) 10 (3.0)

Annual income (Rs.)< 25 000 24 (10.3) 110 (36.4)25 000–49 999 56 (24.2) 96 (31.7)50 000–75 000 104 (45.1) 84 (27.8)>75 000 47 (25.3) 12 (3.9)

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Among those who were dissatisfied with CAM thera-pies, 50% thought they were expensive, 33% felt theywere time consuming and 7% found them stringent tofollow. Ten percent of the patients experienced minoradverse effects like nausea, vomiting, rash and diar-rhoea. But clear association between the CAM useand these adverse effects could not be confirmed.Most of the patients pointed out family members(54.5%) as persons recommending CAM treatment.Other sources of information were neighbours,friends, pharmacists and newspapers (Figure 3). Only3.8% of patients had informed their medical doctorsabout the use of CAM.

DISCUSSION

Much has been written about CAM therapies, includ-ing the difficulties in scientifically evaluating theireffect in physical and psychological terms. Therefore,

there has also been controversy over the benefits andrisks they offer to patients.8 This study attempted notto scientifically investigate the impact of CAM thera-pies but to look at a specific group of cancer patientsto discover what proportion used CAM therapies andwhy.

56.6% of leukaemia patients interviewed in ourstudy used CAM therapies. This figure is higher thanobserved in an earlier study, where 40% of paediatricpatients with acute lymphoblastic leukaemia usedCAM therapies.9 In another study, 35% of leukaemiapatients used CAM therapies.10 Our study shows thatCAM users tend to belong to rural areas, more likelyto be males and with income less than Rs. 25 000 pa($500). This is in contrast to an earlier study whereusers were educated, affluent and mostly females.10

In our view, more than half of the Indian populationlives in villages with agriculture as the only sourceof income. The people, being poor and ignorant,may find conventional therapies inaccessible, and inan attempt to find a cure of ‘blood cancer’, fall preyto CAM practitioners. This might be the possible rea-son of higher prevalence of CAM use in our study.

Ayurveda was the most commonly used CAM fol-lowed by herbal, homeopathy, spiritual healing, diet-ary therapy and megavitamins. In United States,metabolic therapies, diets and megavitamins predomi-nates,3 while in British group of cancer patients, mindbody techniques were most popular.10 This suggestshigh variability in patterns of CAM use from country

Figure 1. Sequence of seeking conventional and CAM therapies

Table 2. Patterns and prevalence of use of CAM

Type of CAM Number (%)

Ayurveda 99 (33)Herbal 70 (23.2)Homeopathy 55 (18.3)Spiritual healing 45 (15)Diet therapy 18 (5.5)Megavitamins 15 (5)

Total 302 (56.6)

complementary and alternative medicine use in leukaemia patients 673

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to country. In India, CAM therapies mostly compriseof ancient systems of healing that are based on con-cepts of human philosophy. Ayurveda’s 5000 yearsold healing techniques have a strong mind body com-ponent, stressing the need to keep consciousness in

balance.5 In rural areas, there are additional culturalfactors that encourage the use of herbals.11 India isa land of strong religious beliefs and diversecultural values which might play an important role indecision-making during illness.

Figure 2. Reasons for opting CAM therapies

Figure 3. Sources of recommendation of CAM therapies

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Fifty-two percent of patients opted from conven-tional to CAM therapy hoping for a miracle cure.Thirty-four percent were looking for less toxic alter-natives to the adverse effects of conventional treat-ments, 12% were dissatisfied with polytherapy andcost of conventional therapy. Most of the users com-mented that they had understood that their conditionwas incurable inspite of conventional treatment, a fac-tor which prompted them to CAM therapy. In a studycomprising 949 cancer patients, majority of usershoped CAM therapies would slow disease progres-sion.12 Morant et al. reported that most frequent rea-son for using CAM cancer therapies was to doeverything possible to regain health.13

Regarding perceptions of patients about CAM, 33%of patients were satisfied with CAM, 57% were dissa-tisfied and 10% were neutral. Of the dissatisfiedpatients, 23.5% had experienced minor adverse effectslike nausea, vomiting, rash and diarrhoea. Rest ofpatients found CAM therapies to be expensive, timeconsuming and difficult to follow. However, efficacyand adverse effects can not be attributed to CAMtherapies only since patients were concomitantlytaking both the therapies. There is little in the way ofcontinuing data concerning the clinical efficacy andtoxicity of CAM cancer treatments. The onlyclinical trials of CAM cancer treatments in past yearshave been studies on Laetrile14 and ascorbic acid.15

Sensory neuropathy has been reported in sevenpatients receiving high doses of pyridoxine hydro-chloride (Vit B6).16 There have been recent reportsin the literature of severe liver and kidney damagefrom a limited number of herbal remedies includingChapparal Tea.5 These reports underscore the fact thatnatural products are not necessarily safe or harmless.

The popularity of CAM is evident from the plethoraof sources from which patients had obtained informa-tion. While neighbours, friends, family members andpharmacists constituted major groups, TV, newspaperand magazines were also instrumental in providinginformation to the patients. In a study conducted on69 paediatric cancer patients, 25% of patients hadreceived recommendations to try CAM.17 In one sur-vey, more than 60% of physicians referred theirpatients to CAM practitioners; primary care physi-cians were most likely to do so.18 In our study, friendsand family members played a major role in patient’sdecision to use CAM therapy. The over-whelminginfluence of social network in health seeking beha-viour precludes any attempt to educate patients aboutthe safety and efficacy of CAM cancer therapies.

When asked if their doctors were aware that theywere using CAM therapies, only 3.8% said that their

doctors knew. Clearly, many patients believe theirdoctors would not understand their use of CAM thera-pies and they fear disapproval from their doctors.19

Some studies have found that patients value the coun-seling aspects of care exhibited by CAM providerscompared to that of conventional medical doctors.These aspects include emotional support, betterunderstanding of their problems, and therapists’ per-sonal attention and devotion of time.20

The present study had certain limitations. Thesetype of surveys are open to recall bias. Moreover, dis-crepancies between what the patient heard or remem-bered, and what that physician had actually said maywell exist. The exact idea about the safety and efficacycan only be established by properly conducted clinicaltrials. Our study was confined to patients visitingtertiary care hospital. So, a community based studymight be a better indicator of prevalence of CAMuse at primary health care level.

The substantial interest in CAM cancer therapiesappears to stem from several sources. The numberas well as content of alternative medicine magazines,articles, books, media, patients reports suggest wide-spread frustration concerning conventional medi-cines’ inability to treat many cancers effectively.5

Intrinsic to the belief in CAM therapies is that conven-tional cancer treatments weaken body’s reserve, inhi-bit the capacity for cure, and misguidedly address thesymptom (cancer) rather than underlying systemicdisorder.21 Thus, CAM therapies are geared towardsimproving the patient’s own biological and psycho-logical capacity to counteract illness. Also, chemo-therapy’s side effects have become increasinglyintolerable to a public focused on ‘natural’ and ‘gen-tle’ substitutes to standard cancer treatments.

In spite of all the limitations, our study stresses thatfor leukaemia patients, hope is an important issue. Ifhope is not imparted by conventional practitioners,some patients may seek it from CAM therapies. It isimportant for doctors to establish good communica-tion and maintain a hopeful attitude when dealing withleukaemia patients, fostering a more collaborativeapproach to management. Finally, as policy makersand health care professionals continue to debatereforms of the present health care system, it seemsimportant to understand why a significant portion ofpopulation is going outside main stream medicine totreat the most serious of medical problems.

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