Complementary and alternative medicine use in patients with haematological malignancies in Europe

ARTICLE IN PRESS Complementary Therapies in Clinical Practice (2005) 11, 105–110

www.elsevierhealth.com/journals/ctnm

Complementary and alternative medicine use in patients with haematological malignancies in Europe Alexander Molassiotisa,, Anita Marguliesb, Paz Fernandez-Ortegac, Dorit Pudd, Vassiliki Pantelie, Ingrid Bruynsf, Julia A. Scottg, Gudbjorg Gudmundsdottirh, Maria Browalli, Elin Madsenj, Gulten Ozdenk, Miriam Magril, Sarka Selvekerovam, Nurgun Platinn, Nora Kearneyg, Elisabeth Patirakie a

School of Nursing, University of Manchester, Coupland III, Coupland Street, Manchester M13 9PL, UK University Hospital Zu ¨ rich, Klinik und Poliklinik fu ¨ r Onkologie, Zu ¨ rich, Switzerland c Institut Catala ` Oncologia ICO, Barcelona, Spain d Faculty of Social Welfare and Health Studies, University of Haifa, Haifa, Israel e Greek Oncology Nursing Society, Athens, Greece f Belgian Society of Oncology Nursing, Brussels, Belgium g Department of Nursing and Midwifery, University of Stirling, Stirling, Scotland h Department of Oncology, Landspitali, Reykjavik, Iceland i Sahlgrenska University Hospital, Gothenburg, Sweden j Oncology Department, Aarhus University Hospital, Aarhus, Denmark k Gazi University Hospital, Ankara, Turkey l Universita ` degli Studi di Milano-Istituto Nazionale Tumori, Milan, Italy m Masaryk Memorial Cancer Institute, Brno, Czech Republic n School of Health Sciences, Koc University, Istanbul, Turkey b

KEYWORDS Complementary medicine; Alternative medicine; Complementary therapies; Leukaemia;

Summary This study reports upon a descriptive cross-sectional survey assessing the use of complementary and alternative medicine (CAM) in patients with haematological cancers. Twelve European countries contributed data from patients with haematological cancers, as part of a larger study. Sixty-eight patients with haematological cancer participated. Among the participants, 26.5% used some form of CAM after the cancer diagnosis. The most common therapies used were homeopathy (38.9%), herbal medicine (22.2%) various psychic therapies, such as use of mediums, healers, rebirthing or past life regression therapy (22.2%). A

Corresponding author. Tel.: +44 161 2755337; fax: +44 161 2757566.

E-mail address: [email protected] (A. Molassiotis). 1744-3881/$ - see front matter & 2005 Elsevier Ltd. All rights reserved. doi:10.1016/j.ctcp.2004.12.005

ARTICLE IN PRESS 106 Lymphoma; Myeloma; Haematologic cancers

A. Molassiotis et al. particular profile of a CAM user was not evident in the sample. Moderate levels of satisfaction with CAM were reported. Patients commonly used CAM to increase the ability of their body to fight cancer and to improve physical and emotional wellbeing. Information about CAM was received mainly from friends or family. As CAM use in patients with haematological malignancies is common, clinicians should assist patients who want to use CAM to make an appropriate decision, and improve communication with them about CAM use in an open and non-judgemental dialogue. & 2005 Elsevier Ltd. All rights reserved.

Introduction The use of complementary and alternative medicine (CAM) is common in cancer patients.1 Literature highlights prevalence of CAM use in cancer patients.2–6 A systematic review of 26 surveys from 13 countries revealed that mean prevalence rate of CAM use is 31.4%, with a range from 7% to 64%.7 Studies of breast cancer patients and CAM use constitute the overwhelming majority of research literature8,9 but may not be representative of other cancer diagnostic groups. The only study found in the literature examining CAM use in haematological cancer comes from India, suggesting that 56.6% used some form of CAM.10 Not surprisingly, Ayurveda, the traditional Indian Alternative Medical System, was the most commonly used therapy. The variables predicting CAM use consistently include female gender, young age, and higher education level.3–5,11,12 Haematological cancer patients, together with breast, lung and brain cancer patients, were shown in a study of Israeli patients to use CAM therapies more frequently compared to other cancer diagnostic groups.13 This present report is a subgroup analysis of a larger (n ¼ 936) survey of cancer and CAM use in Europe.14

cancer attending their routine outpatient clinic were approached and asked to participate in the study. All patients attending a given out patient clinic on randomly selected days formed the population of the study. The questionnaire was translated into the language of each participating country before use. The questionnaire consisted of 27 descriptive items based Swisher et al.15 The first section included information about socio-demographic, treatment characteristics, whether patients had used or were currently using any CAM therapy. Patients using some form of CAM, were asked to

Table 1

Socio-demographic data of the sample. N (%)

Gender

Male Female

33 (48.5) 35 (51.5)

Marital status

Single Married Divorced/separated Widowed

8 52 4 4

Educational level

Primary school Secondary (high) school College/University degree Postgraduate education Professional schools

9 (13.2) 26 (38.3)

Methods The study used a descriptive cross-sectional design, collecting data about CAM use from patients with haematological cancers. Fourteen countries participated in the larger study. Twelve countries provided data in relation to haematological cancers and included Switzerland, Spain, Israel, Greece, Belgium, United Kingdom, Iceland, Sweden, Turkey, Italy and Czech Republic. The study was approved by the Research and Ethics Committees or hospital Boards of all participating hospitals. Data was collected through a standardised descriptive questionnaire. The study was facilitated by the national Oncology Nursing Society in each country and a member of each society coordinated the study locally and collected data. Patients with

Occupation

Annual Income (in h)

(11.8) (76.4) (5.9) (5.9)

15 (22) 7 (10.3) 11 (16.2)

Retired Education/health/ business Housewives Manual work Clerical staff Unemployed

16 (25) 19 (29.6) 6 18 3 1

(9.4) (28) (4.5) (1.5)

o10,000 10,001–20,000 20,001–30,000 30,001–40,000 440,000

17 9 3 5 5

(43.6) (23.1) (7.7) (12.8) (12.8)

 Numbers do not add up all to total sample size, as there was some missing data.

ARTICLE IN PRESS Complementary and alternative medicine use in patients with haematological malignancies in Europe respond to a series of questions, exploring the type(s) of CAM therapies used, reasons for using CAM and any benefits observed, expenditure on CAM therapies, and sources of information. Two 7point items explored patients’ satisfaction with CAM use and their perception of effectiveness, with higher scores representing increased levels of satisfaction and perceived effectiveness. A more detailed description of the methods of the study is presented elsewhere.14 Data from the standardised questionnaire was coded and analysed using the Statistical Package for the Social Sciences (SPSS). Descriptive statistics were used with all study variables to summarise data. Further, non-parametric tests were used to assess any differences between CAM use and sociodemographic characteristics.

Results The sample consisted of 68 patients with haematological cancers. All 12 countries participating

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contributed between 1.5–29.4% of the data. Four countries contributed 73.5% of the data, including Switzerland (29.4%), Spain (19.1%), Israel (16.2%) and Greece (8.8%). The sample consisted of 33 male patients (48.5%) 35 female patients (51.5%). Mean age was 54.52 years (SD ¼ 16.46, range ¼ 18–81). The majority were working in professional jobs (business, health or education) (29.6%), with manual workers (28%) or retired (25%). One third (38.3%) had completed high (secondary) school and 22.1% college or university education. Most (76.4%) were married and earning less than h10,000 annually (Table 1). The majority were diagnosed with lymphoma (n ¼ 41, 60.3%), with 19 leukaemia patients (27.9%) and 8 (11.8%) with multiple myeloma. Almost all (91.2%) were receiving treatment for their cancer, mainly chemotherapy (81.7%). A mixture of patients were receiving curative or palliative care, although specific details were not obtained due to lack of access to patients’ medical records. Of 68 participants, 18 (26.5%) were using some form of CAM. Before the diagnosis of cancer, 19

Table 2 Types and frequency of complementary and alternative medicine used by haematological cancer patients [N (%)]. Type

Before cancer

Since diagnosis with Cancer

Currently

Homeopathy Herbal medicine Psychic therapies Acupuncture Spiritual therapies Vitamins/minerals Bach Flowers Animal extracts Aromatherapy Osteopathy Ayurveda Massage Relaxation Anthroposophic medicine Art therapy Visualisation Support Groups Sour therapy (diet) Autogenic training Reiki Juicing Bioresonance Medicinal teas Chiropractic Electromagnetic therapy Oxygen therapy Coenzyme Q10 Qi Gong

7 3 2 2 2 3 1 1 1 1 1 4 1

7 (38.9) 4 (22.2) 4 (22.2) 2 (11.1) 2 (11.1) 2 (11.1) 2 (11.1) 1 (5.6) 1 (5.6) 1 (5.6) 2 (11.1) 1 (5.6) 1 (5.6) 1 (5.6) 1 (5.6) 1 (5.6) 1 (5.6) 1 (5.6) 1 (5.6) 1 (5.6) —

4 5 4 1

(38.9) (16.7) (11.1) (11.1) (11.1) (16.7) (5.6) (5.6) (5.6) (5.6) (5.6) (22.2) (5.6)

1 (5.6)

2 1 1 1 1

(11.1) (5.6) (5.6) (5.6) (5.6)

(22.2) (27.8) (22.2) (5.6)

3 (16.7) 2 (11.1) 1 (5.6) — 1 (5.6) 2 (11.1) 1 (5.6) 1 (5.6)

—

1 (5.6) 1 (5.6) 1 (5.6) 1 (5.6) —

— —

— —

ARTICLE IN PRESS 108

A. Molassiotis et al.

Table 3

Reasons for using complementary and alternative therapies and perceived benefits [N (%)].

Reasons for use To directly fight the disease To increase body’s ability to fight the cancer To improve physical well-being To improve emotional well-being, hope and optimism To counteract ill effects ‘‘Help, no hurt’’ To do everything to fight the disease

Benefits experienced 1 10 9 9 4 6 4

(5.6) (55.6) (50) (50) (22.2) (33.3) (22.2)

0 (0) 3 (16.7) 8 (44.4) 8 (44.4) 2 (11.1) — —

 Po0.05.

CAM therapies were used. This number increased to 21 after diagnosis. The most commonly used CAM therapies homeopathy (38.9%), followed by psychic therapies, such as mediums, healers, crystal therapy, rebirthing, past life regression therapy (22.2%) and herbal medicines (22.2%). Other practices, included faith healing, Reiki or prayer as a therapy (11.1%), vitamins/minerals (11.1%), acupuncture (11.1%), ayurveda (11.1%) and the use of Bach flowers (11.1%). Decreased use and consumption of vitamins/minerals increased (Table 2). Patients spent an average of h126.9 per month on CAM (SD ¼ 144, range 10–474). Patients were moderately satisfied with CAM (mean ¼ 4.86, SD ¼ 1.4) and reported a moderate level of perceived effectiveness from a therapy (mean ¼ 4.67, SD ¼ 1.45). Patients perceived CAM as increasing their body’s ability to fight cancer (55.6%), improve physical well being (50%), improve their emotional well being and hope/optimism (50%) (Table 3). Main sources of information about CAM were friends (61.1%), family (50%), media (newspapers, magazines, TV), physicians and the Internet.

Discussion This study suggests that at least a quarter of patients with haematological malignancies are using some form of CAM. This rate is lower compared to findings from studies.4,11 As most literature is American, it may be that cancer patients in Europe are less willing to use CAM or know less about CAM. Also, this may be related to availability of CAM across Europe. Nevertheless an increasing trend in CAM use among the Europeans is evident16. This finding also challenges data from Israel, whereby patients with haematological cancers were the diagnostic groups most likely to use CAM.13

Homeopathy was by far the most commonly used CAM modality. Homeopathy has a longer history in Europe and is well-regulated in most countries, which may explain this trend. The trend in CAM use indicated patients were trying a considerable number of new mind-body therapies, after diagnosis of cancer. Manipulative methods were not used. It is interesting to see that spiritual therapies (such as faith healing, Reiki or prayer have been frequently reported in the literature as being used by cancer patients.11,17 Herbal medicine and other ingestibles were commonly used, confirming past literature.17–19 Such high rate of use should alert health care professionals, as there may be risks associated with orthodox drug interactions.20 Nevertheless, the potentially beneficial role of herbal medicine in managing symptoms has been highlighted in the literature with a number of herbs being effective in treating certain symptoms.21 Such methods could enhance symptom management if given within an integrated health care model and is worth further studies. A quarter of the most common herb used was mistletoe. Although the literature suggests that CAM users are more likely to be female, younger and with higher educational level,3,4,11 this study did not find any significant differences or even trends, with such a profile. It may be that a typical profile of a CAM user may not exist for all cancer patients, who will attempt many things if they are persuaded that they may help them. The decision-making process for selecting a CAM therapy is of interest, and future research may provide more information about this issue. Risk Adaptation model may also help to explain the motivation behind CAM use in cancer patients,22 and may be an appropriate cognitive model for explaining such behaviour. Motivational factors need to be explored in more detail in order to enhance our understanding of the decision-making processes patients go through prior to selection of a CAM therapy.

ARTICLE IN PRESS Complementary and alternative medicine use in patients with haematological malignancies in Europe It would seem that initial expectations of CAM efficacy may not match the experienced reality and this has been shown also elsewhere.15 Furthermore, European patients spend considerably more money on CAM therapies than reported in American samples.5 This may be related to insurance coverage of a number of CAM therapies in America, which is not the case in Europe. For example, in one UK study it was shown that only 10% of contacts with a CAM practitioner were provided by the National Health Service.23 Main sources of information about CAM were friends/family and the media, confirming past research.19 This is indicative of the informal nature of the information patients receive about CAM, and may not be accurate or appropriate for all patients. However, it was interesting to see that one-third of CAM users received information from their physicians and 16.2% from nurses. This is a significantly higher number than reported by Swisher et al.15 and may indicate that CAM use is increasingly communicated or discussed with health care professionals. The important role of health care professionals or educators, providing safe and appropriate information within the limits of the available knowledge, is highlighted. Eisenberg24 suggests the use of a step-bystep strategy for responding to patients inquiries about CAM, as a good communication aid for clinicians. Many patients with haematological malignancies will be using CAM therapies. Health care professionals have a responsibility to protect patients and educate them about new interventions using CAM use. However, the available knowledge about many CAM therapies is still in a hybrid stage, and there is an urgent need to improve this situation with more funding for CAM research and CAM effectiveness. The findings should be viewed in light of the study’s limitations. The breadth of the study, including data from 12 countries in Europe, is its major limitation, even though major differences were not observed across countries. The questionnaire was translated in all the languages of the countries involved, and although back translation techniques were used, it is not clear how all the original terms were translated and patients’ understanding of these terms. Patients may have not provided a complete picture of therapies used, as some CAM therapies (i.e. herbal remedies, special diets) may be embedded in some cultures with patients not recognising them as ‘CAM’. Also, the sample size is relatively small, and only tentative generalisations can be made. Further research is needed in ascertaining the use of CAM in haema-

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tological cancers in individual countries. This is the first study looking at the use of CAM in haematological cancer patients in Europe, and this data may assist further research in the use of CAM in European countries.

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