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Complementary Therapies in Clinical Practice 18 (2012) 252e256

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Complementary Therapies in Clinical Practice

journal homepage: www.elsevier .com/locate/ctcp

Complementary and alternative medicines (CAM) disclosure to the health careproviders: A qualitative insight from Malaysian cancer patients

Maryam Farooqui a,*, Mohamed Azmi Hassali b, Aishah Knight Abdul Shatar c, Asrul Akmal Shafie b,Muhammad Aslam Farooqui d, Fahad Saleemb, Hisham Aljadhey e

a Faculty of Pharmacy, Universiti Teknologi MARA (UiTM), Bertam Campus, 13200 Kepala Batas, Penang, MalaysiabDiscipline of Social & Administrative Pharmacy, School of Pharmaceutical Sciences, Universiti Sains Malaysia (USM), 11800 Penang, MalaysiacAdvanced Medical and Dental Institute, Universiti Sains Malaysia (USM), 13200 Kepala Batas, Penang, MalaysiadDepartment of Medicine, Allianze University College of Medical Sciences (AUCMS), 13200 Kepala Batas, Penang, MalaysiaeCollege of Pharmacy, King Saud University, Riyadh, Saudi Arabia

Keywords:

Complementary and alternative medicines(CAM)DisclosurePhysiciansQualitativeMalaysianCancer patients

* Corresponding author. Tel.: þ604-5623561.E-mail addresses: maryamfarooqui.uitm@gm

azmihassali@gmail.com (M.A. Hassali), Aknight@amShatar), aakmal@usm.my (A.A. Shafie), asmar786@hfahaduob@gmail.com (F. Saleem), haljadhey@ksu.edu

1744-3881/$ e see front matter � 2012 Elsevier Ltd.http://dx.doi.org/10.1016/j.ctcp.2012.06.005

a b s t r a c t

This study sought to evaluate Malaysian oncology patients CAM disclosure to the health care providers.Patients were interviewed across three major Malaysian ethnic groups, Malay, Chinese and Indian.Thematic content analysis identified three themes: reasons of CAM disclosure, reasons of CAM non-disclosure and preference of CAM discussion to health care providers. Patients agreed that CAMdisclosure is important to avoid any interaction with the conventional medicines. Perceived lack ofphysicians’ knowledge & interest in CAM, fear of termination of therapy by the physicians upon CAMdisclosure, and perceived simplicity of some of the CAM therapies were among the reasons of non-disclosure. Given the option of oncologists, pharmacists or nurses, patients described oncologists asthe most suitable person to discuss or disclose CAM use due to confidence in their clinical skills.Understanding the underlying beliefs of patients’ reluctance to disclose CAM to health care providers isimportant especially when they are on an ongoing treatment for cancer.

� 2012 Elsevier Ltd. All rights reserved.

1. Introduction cancers are at early or curable stages. Communication between

The use of Complementary and Alternative Medicines (CAM) iswidespread for general health maintenance and management ofdisease symptoms. In Malaysia, there is evidence that a variety ofCAM is used by patients with cancer.1,2 Cancer patients tend to useCAM in an attempt to reduce cancer recurrence and to lessen the sideeffects due to conventional therapies.3 Recommendations fromfamily, reservationswithwesternmedicines and strong influence bytheMalaysian cultural context are amongother reasons of CAMuse.4

Lack of safety and efficacy of CAM therapies and sub-standardmethods of preparations are reported as reasons of not using CAMamong Malaysian oncology patients.3 The CAM usage decisionmaking process is highly complex in nature which revolves aroundnumerous issues such as socio-cultural background5 and the diseaseprogression.6 The role of oncologists and other health care providersin CAM usage decision making may be critical in influencing cancerpatients to adhere to evidence-based treatment regimens whilst the

ail.com (M. Farooqui),di.usm.edu.my (A.K. Abdulotmail.com (M.A. Farooqui),.sa (H. Aljadhey).

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health care providers (including both traditional and modernhealers) is important for patients. There is evidence that CAMdisclosure may varies from as low as 7.6%7 to as high as 73.8%.8 Thewidevariation couldbedue to the types of CAMincluded in the studyinstrument, nature of health condition and size of study population.Patients’ non-disclosure of CAM use may lead to therapy failure orsub optimum care.9 Reluctance in CAM disclosure is reported due tophysicians’ opposition toward CAMuse due to emphasis on scientificevidence, a perceived negative response from the physician upondisclosure, lack of time during the clinical visits and a lack of inquiryby the physicians regarding patients’ CAM use.9e11 In the Malaysiancontext, though studies have investigated the determinants of CAMuse little research has been done on the disclosure of CAM to thehealth care providers. These issues demand an in-depth investiga-tion to provide information regarding patients’ CAM disclosurebehavior to the health care providers. This exploratory study aims toinvestigate reasons of CAM disclosure and non-disclosure to thehealth care providers among a group of cancer patients.

2. Methods

Ethical approval was obtained from the Medical Research andEthical Committee of the Ministry of Health Malaysia prior to the

Table 1Interview guide.

Discussion topics Examples of specific probes

Communication withoncologist

Have you informed yourdoctor about CAM use?If ’yes’ why do you think it’simportant for them to know about this?If ’no’ Why do you think they shouldnot know about this?

CAM discussion withhealth care providersother than oncologist

Whom do you feel most comfortable toseek advice about CAM use? Pharmacists,If ’yes’ why? If ’no’ why not? Nurses, If ’yes’ why?If ’no’ why not?

M. Farooqui et al. / Complementary Therapies in Clinical Practice 18 (2012) 252e256 253

study commencement. The studywas conducted at Penang GeneralHospital. Informed consent was obtained and each respondent wasgiven the patient information sheet in Malay and English to be readprior to the interviews. Patients who were not able to read orunderstand these two languages were given verbal information bythe research assistant in their native languages. A qualitativeexploratory method was used employing a semi-structured inter-view to facilitate an in-depth exploration of patients’ decision ofCAM disclosure to their health care providers.12e14

2.1. Study tool

A semi-structured interview guide was used as the study tool(Table 1). The interview guide was developed after extensiveliterature search. A list of possible questions to assess patients’reasons of CAM disclosure or non-disclosure to the health careproviders was identified from the literature. While creating thequestions, the focus was to keep the questions as open as possibleto give interviewees maximum opportunity to express their views.The interview guide was modified following discussions amongstthe authors. This included an oncologist, public health expert,general physician and pharmacists. The pre-testing of the interviewguide was done before the interviews were conducted.

2.2. Study participants

The participants were purposively selected from the threemajorethnic groups in Malaysia; namelyMalay, Chinese and Indians fromFebruary to July 2010. Patients 18 years of age or older, diagnosedwith cancer at least six months ago and not more than five yearspost diagnosis and reported to use at least one or more types ofCAM since their diagnosis were included. The principal investigatorrecruited patients for participation in the study. The only exclusioncriterion was cognitive impairment either as a result of the canceror other disease process such as dementia. Purposive sampling wasconducted and the recruitment of participants was continued untilthe saturation point was reached when no new information wasobtained after subsequent interviews.15

2.3. Interview process & data collection

Interviews were conducted in the Malay language; however,Tamil and English languages were used for patients who prefer tocommunicate in these two languages. We appointed and trainedtwo research assistants from Indian and Malay ethnic backgroundsto help in the interview process. Chinese patients were interviewedeither in Malay or English languages. The interviews lasted forabout 20e30 min. The principal investigator attended all

Table 2Demographic and clinical characteristics of participants.

ID Age Sex Ethnicity Religion Marital status Socio-economic status Educa

P1 48 Male Malay Islam Married Middle SeconP2 63 Male Indian Hindu Married Middle SeconP3 34 Female Malay Islam Married Middle PrimaP4 56 Female Indian Hindu Widowed Low PrimaP5 46 Female Malay Islam Married Low PrimaP6 46 Male Malay Islam Married Low MatricP7 65 Male Chinese Buddhist Married Middle MatricP8 51 Male Malay Islam Married Low SeconP9 50 Male Chinese Buddhist Married Middle PrimaP10 39 Female Malay Islam Married Middle SeconP11 40 Female Malay Islam Married Middle MatricP12 24 Female Malay Islam Married Low Matric

P ¼ Participant.Low(Less than RM 1000/month), Middle (RM1000-RM3000/month).Stage II & III (Locally advanced), Stage IV (Metastatized to other organs).

interviews with the research assistant to take field notes and tofacilitate the interview process. All interviews were audio-recordedso that verbatim transcriptions could be created.

Each interview was transcribed verbatim by the researchassistant trained for this purpose. The transcripts were then veri-fied by the principal investigator for their accuracy by listening tothe tapes and sent to the participants for approval. Patients’demographic and disease related data was obtained by a question-naire attached to the patient information sheet. Content analysismethodwas used to assess the data. Each transcript was read by theprincipal investigator to record the raw data thematically. Thethemes were then discussed with other independent researchers toensure the reliability or trustworthiness.16 Each transcript wasrepeatedly read to identify the common themes. All authors dis-cussed the anticipated themes (important to the researchers) aswell as emergent themes (raised by the patients) to refine theanalysis.16 The interviews were continued and concluded untilreach to the theoretical saturation when no new information wasbeing after subsequent interviews.17 A total of 12 cancer patientswere interviewed.

3. Results

Patients’ demographic and disease characteristics are summa-rized in Table 2. The most commonly used CAM therapies were,traditional Chinese medicines, spiritual therapies including prayersfor health reasons, meditation, biologically based therapies such asherbs, particular foodstuffs, vitamin, supplements, traditionalMalay therapies, massage, Qi gong, Reiki etc. Although participantsreported to use CAM therapies, all patients were compliant withconventional medical treatments provided in the hospital at thetime of interview. During the analysis the themes identified were:reasons for CAM disclosure and non-disclosure to the health careproviders and disclosing CAM use to the health care providers other

tional background Type of cancer Stage of cancer Diagnosed with cancer since

dary Colo-rectal IV 2009dary Colo-rectal II 2009ry Breast IV 2009ry Liver III 2007ry Breast IV 2008ulation/diploma Naso-pharynx II 2009ulation/diploma Colo-rectal IV 2005dary Colo-rectal III 2008ry Colo-rectal IV 2009dary Cervix II 2009ulation/diploma Cervix III 2009ulation/diploma Cervix II 2009

M. Farooqui et al. / Complementary Therapies in Clinical Practice 18 (2012) 252e256254

than oncologists. Out of 12 patients, only four CAM users reportedto disclose their CAM use however eight of the participants did notdisclose their CAM use to their health care providers.

3.1. Reasons of CAM disclosure

Patients reported to put trust on their treating health careproviders and the reason given of CAM disclosure was to receivebetter advice from doctors on CAM whom patients perceive asknowledgeable on CAM therapies.

Sharing [CAM use] with doctors is important as they know betterwhat to take and what not. (P8)

Traditional medicines doesn’t suit to everyone’s body. I believedoctors have some knowledge about traditional therapies. They knowmy condition, they can better suggest me about the CAM. (P1)

An apprehension of the interaction of CAM with conventionaltherapies was apparent among cancer patients. Participants agreedthat oral, invasive CAM therapies may interact with conventionaltherapies and it should be disclosed and discussed with oncologistsprior to their use.

I was worried that may be it will jumble up with the hospitalmedicines, at least I told. the doctors can give some advice. (P8)

There was also the perception that chemotherapies were strongmedicines probably due to their adverse effects on the body and thefear of chemotherapy-CAM interaction and their further unknownharmful effects to the body prompted patients to have a discussionwith the oncologist prior to their use.

“You know.right, Cytotoxic drugs are strong medicines, tradi-tional medicine can affect the efficacy of chemo drugs, so it is better toask doctors first. (P1)

Perceived fear of cross reactions between CAM and conventionaltherapies and its subsequent effects on patients’ relationship withphysicians lead some of the patients to decide to disclose their CAMuse to their practitioners.

If I use [CAM] without their[doctors] permission and anything goeswrong, they won’t be happy as we did not follow their advice”. (P2)

3.2. Reasons of CAM non-disclosure

Patients perceived that due to less emphasize given on CAM inmedical curriculum; doctors have minimal knowledge and theyseldom belief in CAM therapies.

Doctors throughout their medical career only learn about moderntherapies, they seldom learn about traditional medicines, so they don’tbelieve in these practices. (P3)

Fear of termination of therapy and perceived anger by thephysicians were the reasons of not disclosing CAM use.

Once I told one of the doctors on duty, that I feel better if I take thesesupplements, he said ’it will be for short term but not permanently’. Headvised me to stop. I think he will be angry with me if I told him that Iam still using it. (P5)

I believe that doctors will stop the hospital medicine and will notentertain me anymore. (P4)

Interestingly some patients perceived doctors’ advice in a totallydifferent way, which may be counterproductive and perhaps evendangerous. The oncologist seldom restricts their patients’ dietaryhabits and one of the patients took this as ’permission’ to use CAMwithout the need to disclose. When asked about CAM use and itsdisclosure to the doctor the patient reported:

I neverasked thedoctor sincedoctor said I caneatwhatever Iwant. (P9)Such perceptions by patients may put them at a risk of inter-

actions. It is important that physicians must provide furtherexplanation and counseling regarding the information given by thephysicians.

Perceived harmless nature of herbal therapies and the noninvasive CAM therapies such as spiritual practices was a reasonfrom a respondent who did not disclose CAM use.

I don’t know whether it is important to tell them about using thesesimple things like herbs or some spiritual therapies. (P12)

There were respondents who reported non-disclosure of CAMuse because the doctors never asked.

About the traditional practitioners, they (doctors) didn’t ask me so Ihaven’t told them. (P11)

“No, I don’t, share my visits to the traditional healers with thedoctors. Even the doctors don’t tell me the do’s and don’ts”. (P10)

There was an expectation by one of the patient that the healthcare providers should enquire or initiate a discussion on CAM.

“If it [CAM disclosure] is so important they should ask me, but noone inquired”. (P12)

3.3. Disclosing CAM use to other health care providers (nurses/pharmacists)

When given an option of doctors, nurses and pharmacists tochoose about CAM discussion, majority of the respondents(including both who disclosed and not disclose their CAM use)preferred doctors to discuss about their CAM use.

I think doctors are the best person to talk, because they are the onewho know my condition from the beginning [since cancer diagnosis]so they are on the best position to advice me. (P7)

The respondents completely rejected the idea of talking aboutCAM use to pharmacists or nurses. From the respondents’ viewpoint, the pharmacists’ role was only limited as drug dispensers.

Pharmacist, they know about pain killers or cold medicines butcancer medications are different from that. (P8)

Pharmacist. they do not know our body condition, they givemedicines based on what we are saying, that’s it, and I think they arenot at the position yet to talk about cancer. (P6)

The role of nurses in cancer care was described as limited toproviding medications in the ward. The nurses’ hectic dutyschedule discourages the respondents from seeking help or adviceregarding CAM.

I would prefer doctors to talk.. nurses, most of the time they arebusy in wards. (P6)

4. Discussion

This study aimed to evaluate cancer patients’ CAM disclosure tothe health care providers. Patients who decided to disclose CAMuse perceived their doctors as more knowledgeable on CAM andappear to put trust on their physicians regarding the safe use ofCAM for cancer. Effective physician-patient discussion on CAM useis crucial in order to reduce the dangers of CAM-drug interactions.18

Fear of interaction of CAM therapies with biomedical treatmentswas another reason participants decided to disclose CAM use totheir physicians. CAM disclosure rates are reportedly higher amongoncology patients5,19 as compared to other chronic conditions suchas coronary artery syndrome20 and HIV/AIDS.21 This could be due tothe disease perceptions, severity of illness, and fear of interactionof CAM with conventional therapies.3,22 The diagnosis of cancer,however, can create a great desire to try any treatment which offersa cure and use of CAM therapies may put patients at risk of side-effects as well as unknown drug interactions due to a lack of dataregarding the safety of CAM therapies. The lack of physicians’interest about CAM therapies were among the reasons patientsdecided not to disclose their CAM use. As reported previouslyparticipants of this study perceived physicians’ limited knowledgeon CAM therapies as a reason they might not be able to contributeuseful information in CAM use decision making process.19 The lack

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of emphasis given on CAM therapies in themedical curriculummayindirectly contribute to the patients’ perception of their physicians’having limited knowledge on CAM therapies and this in turn leadsto their non-disclosure. Even though in recent years specific CAMtherapies have been welcomed by orthodox physicians23 a fear ofnegative response and criticism by the physicians limited some ofthe study participants to disclose their CAM use. Similar to whathas been reported previously participants of this study feared thatdisclosing CAM use to the physicians may lead to reduction in thelevel of care.24 However; CAM discussion with health careproviders is reported to be associated with better ratings of qualitycare.7 Study participants also feared that CAM disclosure may bringto a refusal of treatment by their physicians. As this study wasconducted in one of the public hospital in Malaysia and theparticipants were from the low to middle income group, govern-ment hospitals was the only choice for treatment as the high costsof cancer treatment in most private hospitals may require patientsto use their life savings to pay for treatment.25

Negativeactionsor responsesbyhealthcareproviders that includescolding or yelling would be worrying to patients and could makethem even more reluctant to disclose their CAM use.9,26 A friendlydialogue initiated by the physicians may help patients get themessage better regarding potential dangers of CAM therapies topatients’ health rather than a confrontative approach.7,27 CAMdisclosure is a function of both patients and physicians.28 As reportedpreviously theparticipants of this studydecided todisclose their CAMuse only when asked by the oncologist.29 However, an ever growingincrease in cancer cases andvarietyof serviceswhichphysicians needto provide may not allow them to open a discussion on CAM. Lack ofconsultation time due to a disproportion in patient-oncologist ratiocould be a possible reason that physicians tend not to begin anydiscussion on CAM use.30 In Malaysia, the number of trained oncol-ogist in private hospitals is about twice that of public hospitals. In2003, there were 23 oncologists in private sector and only 11 oncol-ogists were reported to work in public hospitals.31 Herbal medicinesand non-invasive CAM therapies are often perceived harmless thustheir disclosure to the health care providers are useless.32 However,oral use of herbs contains greater risks of toxicity due to differences intherapeutic and toxic doses.18 Study participants perceived herbs,spiritual therapies as simple ormay be daily life practices whichmaynot require any discussionwith the physicians.

Despite a fear of oncologists’ negative response regarding CAMuse, the study participants placed a lot of trust on their physiciansregarding their CAM use. The role of pharmacists in cancer treat-ment decision making process was limited to their dispensingactivities only. Participants reported seeking pharmacists’ adviceonly for minor illnesses because of a lack of trust on their clinicalskills. In most of the developing countries there is a lack of recog-nition of the role of pharmacists beyond traditional dispensers ormedicine sellers by the general public and other health careproviders.33 Though clinical oncology pharmacy services areexisting in Malaysian health care system the role of oncologypharmacists are not well recognized in CAM discussion or decisionmaking process. Even though the oncology nurses are reported tobe far more tolerant on CAM discussion than the oncology physi-cians, the study participants barely chose them as a source ofseeking advice on CAM usage.34 The participants perceived the roleof nurses as limited to providing medications in the ward. Thenurses’ hectic duty schedule discourages the respondents fromseeking help or advice regarding CAM.

4.1. Limitations

The study participants were recruited from a public hospital inMalaysia, however; CAM disclosure rate may differ if patients were

recruited from private hospitals where patient-oncologists ratio isbelieved to be better thanpublic hospitals. The paucity of the fundingrestricted the study to only one hospital in Malaysia; however,significant effort was made to include a wide range of patients fromdiverse ethnic background and a variety of different types of cancerwhich may help to generalize the data to some extent.

5. Conclusion and recommendations

In conclusion, this study identified patients’ concerns towardspotential interaction of CAM therapies with the conventionalmedicines as a major reason of CAM disclosure. However, physi-cians’ lack of interest in CAM, fear of termination of therapies uponCAM disclosure and perceived simplicity of CAM were the reasonspatients decided not to disclose their CAM use. Understanding theunderlying beliefs of patients’ reluctance to disclose CAM usage tohealth care providers is important especially when they are on anongoing cancer treatment. Patient education intervention is war-ranted to improve patients’ behavior regarding CAM discussionwith their physicians. Results from this study can help physicians toinitiate open discussions with patients at the time of treatmentdecision in order to improve patients’ compliance towards proventherapies. In the Malaysian context, further research is required toevaluate physicians’ attitude towards cancer patients’ use of CAM.Though the role of pharmacists and nurses in CAM decision makingprocess was merely seen as drug dispensers or administrator, theirrole can be seen beyond their current duties.

Conflict of interest statementWe have no conflict of interest.

Acknowledgements

We wish to thank all the patients who participated in the study.Thanks to Sharuliza bt Haja Hussain and Sharifah Farah binti SyedIsa who helped in conducting the interviews. Thanks to ResearchManagement Institute (RMI), Universiti Teknologi MARA (UiTM) forfunding the study under Excellence Fund scheme.

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