Support Care Cancer DOI 10.1007/s00520-016-3097-2

ORIGINAL ARTICLE

Use of complementary and alternative medicine by pediatric oncology patients during palliative care Tim Schütze 1 & Alfred Längler 1 & Tycho Jan Zuzak 1,2,3 & Pia Schmidt 4 & Boris Zernikow 4

Received: 31 August 2015 / Accepted: 24 January 2016 # Springer-Verlag Berlin Heidelberg 2016

Abstract Purpose Although the popularity of complementary and alternative medicine (CAM) has risen in the last decade, information about its use by pediatric patients in palliative care is still scarce. The purpose of the study was to assess the frequency and types of CAM administered by parents with children suffering from cancer during the palliative phase. Methods All parents who lost their child due to cancer in the federal state North Rhine Westfalia/Germany were eligible for the study. The first group of eligible parents was contacted in 1999–2000 and a second group of parents in 2005–2006. Upon agreement, parents were asked to complete a semistructured questionnaire about the frequency of CAM use and the specific treatments that had been used. The types of CAM were categorized according to the National Center for Complementary and Alternative Medicine (NCCAM). Results A total of 96 parents participated in the study (48 in each cohort). Forty-three percent of all parents in both groups

* Tycho Jan Zuzak [email protected]

1

Faculty of Health, School of Medicine, Professorship for Integrative Pediatrics, University of Witten/Herdecke, Alfred-Herrhausen-Straße 50, Witten 58448, Germany

2

Department of Pediatric Oncology and Hematology, University Children’s Hospital Essen, Hufelandstr. 55, Essen D-45147, Germany

3

Communal Hospital Herdecke, Pediatrics and Adolescent Medicine, Gerhard Kienle Weg 4, Herdecke 58313, Germany

4

German Paediatric Pain Centre, Children’s Hospital Datteln, Department of Children’s Pain Therapy and Paediatric Palliative Care, Faculty of Health-School of Medicine, Witten/Herdecke University, Witten, Germany

reported CAM use. The results show an increase of CAM use from 38 % in the first group to 49 % in the second cohort of pediatric patients during palliative care. The most common types of CAM used in both groups were homeopathy and treatment with mistletoe preparations. Conclusions The study provides information about usage of CAM in children suffering from cancer during the palliative phase of the disease. Further research is required to investigate benefits, potential adverse effects, and the potential efficacy of CAM in this population. Keywords Complementary and alternative medicine . Children . Cancer . Pediatric oncology . Palliative care

Introduction Complementary and alternative medicine (CAM) is considered a group of medical practices, products, or even whole medical systems that are not usually part of conventional medicine [1]. The usage of CAM instead of conventional medicine is called alternative medicine. Integrative medicine is the supplemental use of evidence-based CAM therapies alongside conventional therapies. The National Center for Complementary and Alternative Medicine at the National Institutes of Health (NIH) groups CAM practices into broad categories such as whole medical systems, mind-body medicine, biologically based therapies, manipulative and bodybased practices and energy medicine (Appendix 1) [1]. CAM is gaining in popularity and importance worldwide. Figures provided by the World Health Organization (WHO) indicate that 48 % of the population in Australia, 70 % in Canada, 42 % in USA, 38 % in Belgium, and 75 % in France have used CAM at least once [2]. The application of CAM in diseased children is growing as well [3–6]. The

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frequencies of CAM use in pediatric oncology range from 12 to 42 % in Europe, 25 to 82 % in USA, and up to 85 % in Asia [7–11]. In Germany, a large representative population-based study on prevalence of CAM use among German pediatric oncology patients shows, that in a cohort of 1063 children suffering from cancer, 35 % applied CAM at any time of disease [12]. Reasons for the use of CAM in pediatric oncology are manifold. Primarily, parents use CAM for their diseased child to strengthen the immune system, improve the child’s inner strength, i.e., providing physical and mental stabilization, and finally to support the child in coping with the disease [7, 9, 11–14]. In the majority of cases, CAM is used as an adjunct to conventional medicine rather than an alternative. Only few cases have been reported where parents used CAM as an alternative to conventional cancer therapy due to dissatisfaction with conventional therapy [12, 15]. In Germany, 1685 new cases of cancer from an estimated population base of 10.9 million patients under 15 years of age were reported to the German Childhood Cancer Registry (GCCR) in 2012 [16]. For this population, the 5-year survival probability is 84 % and the 10-year survival probability is 82 %. Approximately 400 pediatric cancer patients under the age of 15 years die from cancer in Germany each year. The end-of-life period of a disease, e.g., in pediatric cancer patients, begins when there is no realistic chance for cure anymore [17]. These children suffering from a life-limiting illness or life-threatening condition due to cancer should receive palliative care [18]. Models of care for dying children comprise the active total care of the child’s body, mind, and spirit [19]. Pediatric palliative care aims to prevent or relieve the symptoms due to the life-limiting disease [20]. Therefore, it includes a broad multidisciplinary approach that may include CAM treatments [18]. Reports on the usage of CAM in pediatric cancer patients during the palliative phase of disease are rare. To the authors’ knowledge, there is only one published study and one literature review on the use of CAM in pediatric oncology patients during the end-of-life period to date [21, 22]. The present study is the first report on this topic for Europe.

Methods A cross-sectional study was performed in North RhineWestphalia, Germany’s most densely populated federal state, with 17.8 million inhabitants, of whom 1.5 million are children aged 0–15 years [23]. The study-protocol was approved by the Ethics Committee of the University of Witten/Herdecke. Participants of this study were parents who lost their child due to cancer in North Rhine-Westphalia. All pediatric

oncology centers in North Rhine-Westphalia were contacted to participate in this study. After approval by the respective pediatric oncology department, the hospitals contacted parents who lost their child due to cancer. For this survey, two collectives of parents were asked, e.g., parents who lost their child due to cancer between January 1st 1999 and December 31st 2000 (cohort 1) and parents who lost their child due to cancer between January 1st 2005 and December 31st 2006 (cohort 2). Those parents who agreed to participate were contacted via telephone and were invited for an interview either in person or via phone. Parents had to give their written informed consent to participate in the study. Parents were asked to answer a semi-structured questionnaire in face-to-face interviews or by telephone. This questioning was part of two larger previously published studies focussing on parents’ perspectives on symptoms, quality of life, characteristics of death, and end-of-life decisions in children dying from cancer [24, 25]. Therefore, a semi-structured questionnaire, developed by Wolfe et al., was utilized [26]. The questionnaire was translated into German and slightly modified. In a pilot study, pediatric oncologists, psychologists, and nurses validated the questionnaire and ten bereaved parents were asked to answer this modified version. This adjusted questionnaire included two questions specific for CAM. The first question inquired if the child had received any kind of CAM treatment and the second question inquired which specific CAM treatment had been used. There was no definition of CAM or CAM treatments provided to respondents; therefore, parents used their own interpretation of CAM and the answers were collected in form of free-text. Descriptive statistics were performed using SPSS (version 19.0).

Results Demographic features A total of 294 parents were asked to participate in the study. The first investigation for this study was carried out from October 2003 until July 2004. One hundred thirty-six potentially eligible parents who lost their child due to cancer in 1999 and 2000 in North RhineWestphalia, Germany, were contacted to participate. For the second survey carried out between September 2010 and August 2011, a total of 158 parents whose child died of cancer in 2005 or 2006 in North RhineWestphalia, Germany, were contacted. A total of 96 questionnaires were eligible for the study. In each study, 48 parents who lost their child due to cancer agreed to participate (response rates 35 and 38 %, respectively). 37/48 (77 %) participating parents in the first cohort

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were female whereas among the second cohort of 48 participating parents 35/48 (73 %) participants were female. 8/48 (17 %) and 11/48 (23 %) interviews respectively were conducted with father and mother. The remaining interviews were conducted with one parent only. Most of the 96 children, i.e., 68/96 (71 %) were male. The percentage of male children in the second sample was slightly higher than in the first cohort (37/48 and 31/48, respectively). The median age at time of diagnosis for the whole group was 5 years. At time of death, the median age of the children was 9 years in both cohorts (Table 1). Disease and treatment features Leading cancer diagnoses in the two sample groups were leukemia and brain tumors, followed by neuroblastoma and other tumor diagnoses like hepatocellular carcinoma or clear cell sarcoma. The results of the percentage assignment for the disease features in the two cohorts can be found in Table 1. 35/35 (100 %) children in the first group had a relapse. In 13

Table 1

Characteristics of the deceased children

Child characteristics

Total (n = 96)

Demographic features Female Median age at diagnosis in years (SDa, IQRb) Median age at death in years (SD, IQR) Disease features Brain tumor Leukemia Sarcoma Neuroblastoma Hodgkin lymphoma Non-Hodgkin lymphoma Bone neoplasm Others Treatment featuresd Chemotherapy Radiation Surgery No treatment Missing data a

Standard deviation

b

Interquartile range

28 (29 %) 5.2 (5.7; 0.03–32.0c) 9.0 (6.2; 1.0–33.0)

cases, data were missing. 31/46 (67 %) children in the second cohort suffered from relapses. Data were missing in two cases. More than half of the diseased children in the two cohorts did not receive any therapy, i.e., chemotherapy, radiation, or surgery in the end-of-life care period. Nearly one third of the children in both cohorts received chemotherapy during the end-of-life care period. Radiation and surgery were only used in a few cases in both samples Table 1. Prevalence of CAM use Of the 96 families who responded, 41 (43 %) reported the use of CAM during their child’s palliative phase of disease. The share of parents using CAM to complement their child’s conventional cancer therapy was higher in group two. 18/46 (38 %) parents in the first cohort and 23/47 (49 %) in the second cohort implemented CAM during their child’s palliative phase of disease. Nearly half of the CAM using children in the two cohorts used two or more CAM therapies. 8/18 (44 %) and 14/23 (66 %) children received more than one CAM treatment. The most common type of CAM received was homeopathy. Of the 41 families who reported CAM use, 13 (32 %) used homeopathy (5/18 CAM users of cohort 1; 8/23 CAM users of cohort 2). 9/41 (22 %) CAM users received mistletoe therapy followed by 7/41 (17 %) patients who visited a healer or faith or spiritual healer. The remaining CAM therapies were only mentioned in a few cases (Table 2). Different types of CAM

27 (56 %) 24 (50 %) 6 (13 %) 12 (25 %) 2 (4 %) 4 (8 %) 6 (13 %) 15 (31 %) 30 (33 %) 5 (5 %) 6 (7 %) 55 (60 %) 4

The reported CAMs were assigned to five groups according to the NCCAM classification of CAM therapies [1]. According to this assignment, results show that biologically based therapies are the group of CAM used most often. 26/41 (63 %) CAM users received biologically based therapies that include mistletoe therapy, Boswellia serrata and phytotherapy (Table 2). 17/41 (41 %) parents reported the use of whole medical systems to complement their child’s cancer therapy. Within this group, homeopathy was mentioned most often (13/41 CAM users). In this study, only few patients used energy medicine (10/41 CAM users), mind-body interventions (9/41 CAM users), or manipulative and body-based practices (4/41 CAM users).

Discussion

c

One outlier treated on a pediatric oncology ward was included, because there was no upper age limit for eligible patients

d

Differing total number is due to multiple treatment use by some patients

Many studies have estimated the prevalence of CAM use in pediatric oncology patients. Reports on the usage

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Reported CAM use of pediatric oncology patients in palliative

Types of CAM

Total (n = 96)

Total CAM use

41 (43 %)

Biologically based therapies

26 (63 %)

Mistletoe therapy Boswellia serrata

9 5

Herbal product not specified

3

Tea not specified Snake poison

2 1

Mustard oil Fish oil

1 1

Caraway oil

1

Aroma therapy

1

Helleborus niger Macrobiotic diet Manipulative and body-based practices

1 1 4 (10 %)

Autoblood therapy

1

Foot reflexology Hyperthermia Massage therapy

1 1 1

Mind-body medicine Healer Music therapy Singing bowl massage

9 (22 %) 7 1 1

Whole medical systems Homeopathy Anthroposophic medicine

17 (41 %) 13 2

Ayurvedic medicine Naturopathy Energy medicine Energetic healing Laying on of hands

1 1 10 (24 %) 3 3

Reiki Bioresonance therapy Chi massage therapy Multiple CAM treatments

2 1 1 22 (54 %)

of CAM in children suffering from cancer during palliative care are rare. This study provides a unique description of CAM prevalence and CAM therapies used by children with cancer during the palliative phase of disease. Results showed that 43 % of the 96 children used CAM during the end-of-life care period to complement the conventional cancer treatment. This study reported an increase of CAM use in the two investigated cohorts. Thirty-eight percent of the children in the first

cohort used CAM during the palliative phase of disease to complement the conventional cancer treatment. The number of CAM users increased to 49 % in the second group of pediatric oncology patients. This is contradictory to results of a previous study by Tomlinson et al., who reported about 77 Canadian palliative pediatric oncology patients [21]. 22/77 (29 %) children received at least one type of CAM during the palliative phase of disease. Interestingly, Tomlinson et al. could show that nearly twice as many parents had previously considered using CAM for their child [21]. One reason for this discrepancy might be a low communication rate between patients and physicians about this topic [27]. The CAM usage rates found in this current study for pediatric oncology patients during the palliative phase o f d i s e a s e i n G e r m a n y a r e m a r k e d l y h i g h e r. Unfortunately, the study of Tomlinson et al. is the only study concerning CAM use during palliative phase of disease in children suffering from cancer [21]. All other comparable studies treat pediatric oncology in general. A representative nationwide study among German pediatric cancer patients revealed a CAM usage rate of 35 % [12]. Frequencies of CAM use in the European pediatric oncology population range from 12 to 42 % [7, 8]. On a worldwide scale, the use of CAM among pediatric oncology patients is popular with 35–65 % in the Middle East, 49–85 % in Asia, 49 % in Canada, and up to 82 % in USA [10, 11, 28–31]. The results of the present study showed that CAM use among pediatric oncology patients during the palliative phase of disease is common and increased from 38 % in the first to 49 % in the second cohort. An increasing interest in CAM therapies in pediatric cancer patients seems to be apparent. Parents of these children are willing to try everything possible for their child [7, 32]. During the palliative phase of a disease, the concomitant therapies are mainly used in the hope for reduction of stress and anxiety and an enhancement of a ‘feel-good’ effect [33]. Another aspect for the use of CAM may be in order to meet the patients’ individual needs in sense of a person-centered, individual treatment [34]. Following the WHO definition of palliative care, the support of children suffering from a life-limiting or life-threatening disease should comprise a care of the child’s body, mind, and spirit [19]. CAM is a way to focus on the whole patient, meaning body, mind, and spirit. Patients may receive a more personal and holistic end-of-life care through the application of CAM during the end-of-life care period [35]. The NCCAM classification of CAM summarizes the broad variety of CAM therapies in five categories (Appendix 1) [1]. Parents who stated the use of CAM in this study most frequently mentioned the use of

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biologically based therapies (26/41 CAM users). In this particular category, most of the surveyed children with cancer used mistletoe preparations or Boswellia serrata during the end-of-life care period. The use of mistletoe preparations is popular among cancer patients in Europe, especially in German speaking countries. Mistletoe therapy is a fundamental part of anthroposophic medicine. Nonetheless, the NCCAM classification of CAM summarizes it under biologically based therapies. Controlled clinical trials showed significant positive outcomes for the adjunctive use of mistletoe on survival, tumor remission, quality of life, and reduction of side effects during chemotherapy [36]. The application of mistletoe therapy in children with cancer seems to be safe and has no negative impact on the first-line therapy [37]. The second most widely used type of CAM parents reported in this study was whole medical systems (17/41 CAM users). Besides naturopathy, ayurvedic and anthroposophic medicine, homeopathy was mentioned most often in this group (13/41 CAM users). Tomlinson et al. reported similar findings [21]. Homeopathy was mentioned most often among their investigated cohort of 22 children (5/22 CAM users). Tomlinson et al. figured that parents of children suffering from cancer tend to use homeopathy when their child is in the palliative phase of disease [21]. It can be assumed that a potential reason for the high use of homeopathy in children during palliative phase of disease could be the fact that homeopaths dedicate more time and devote more attention to their patients; e.g., a homeopathic interview can take up to 2 h [38]. Längler et al. showed that use of whole medical systems among German pediatric cancer patients is common as well [12]. Within their group of pediatric cancer patients, most of the children used homeopathy to complement their cancer treatment. Homeopathy seems to be popular among European pediatric cancer patients with frequencies of use ranging from 45 to 58 % [38, 39]. Results of non-European studies only show small percentages of homeopathy use in children suffering from cancer. Figures for homeopathy use in pediatric oncology in North America vary from 1 % in USA to 25 % in Mexico [15, 40]. Besides biologically based therapies and whole medical systems, only few patients used energy medicine (10/41 CAM users) or mind-body interventions in this study (9/41 CAM users). These findings are similar to other European findings from Germany and Italy, where only a small percentage of pediatric CAM users applied mind-body or energy medicine [7, 12]. In contrast to the less frequent use of whole medical systems such as homeopathy in the USA, the use of mindbody therapies and energy medicine in pediatric oncology is widely spread in North America. Therapies like visual

imagery, relaxation techniques or Therapeutic TouchTM and Reiki are commonly used mind-body and energetic therapies among American and Canadian pediatric cancer patients [9, 15, 31, 32]. Berger et al. reported on a complementary therapy pilot project implemented in a hospital’s palliative care unit [35]. Patients received Reiki, Therapeutic Touch TM , aromatherapy, and massage. Patients reported decrease in pain, anxiety, tension, discomfort, and restlessness as well as an increase of inner peace and stillness. Regarding the different types of CAM, the present study supported the findings of Tomlinson et al. that homeopathy is commonly used in pediatric oncology patients during the palliative phase of disease. Results of this study also concurred with findings of other European studies concerning homeopathy. A limitation of this study is that there was no definition of CAM provided to the interviewed parents because this study was part of a larger analysis on parents’ perspectives on symptoms, quality of life, characteristics of death, and end-of-life decisions in children dying from cancer [24]. Thus, some of the answers concerning the question of CAM use could not be evaluated and included in our study, e.g., some of the parents answered antibody therapy or gene therapy to this particular question. Further studies on the evaluation of CAM therapies should provide a definition of CAM and give examples of the included therapies, for example, according to the definition provided by NCCAM [1]. The prevalence of CAM use in pediatric oncology patients during palliative care has rarely been investigated to date. The present study showed that many pediatric oncology patients used CAM treatments during their end-of-life care period. It can be assumed that CAM therapies might be a way to support children suffering from cancer during the palliative phase of disease. In order of a holistic support for these children, health care providers should provide their patients with information about CAM on the basis of existing scientific evidence. This requires further research to investigate potential adverse effects and the potential efficacy of CAM for children in a palliative situation.

Acknowledgments We would like to thank the parents who agreed to participate in the study. In addition, we thank all of the departments that participated in the research and that helped us to contact the parents. We thank Rebekka Bailey for editing the manuscript.

Compliance with ethical standards The study-protocol was approved by the Ethics Committee of the University of Witten/Herdecke. Funding No funding was received for writing this manuscript.

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Appendix 1

8.

Table 3 The National Center for Complementary and Alternative Medicine’s (NCCAM) broad categories of complementary and alternative medicine (CAM) [1]

9.

NCCAM categories

Examples

1. Biologically based therapies

Herbal medicine

10.

Vitamins Minerals 2. Manipulative and body-based practices Chiropractic manipulation

11.

Osteopathic manipulation 3. Mind-body medicine

Massage therapy Meditation Yoga

12.

Acupuncture Qi gong

4. Whole medical systems

5. Energy medicine

Tai chi Hypnotherapy Spiritual/faith healing Ayurvedic medicine Homeopathy Naturopathy Anthroposophic medicine Traditional Chinese medicine Reiki Therapeutic TouchTM

13.

14.

15.

16. 17.

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