Objective. To compare the use of alternative therapy (AT) in families of children with cancer with its use in those with routine pediatric conditions.
Background and Rationale. AT refers to healing practices such as therapeutic massage, acupuncture, and use of medicinal herbs that have become increasingly popular with the general public, but are not widely accepted by the medical profession. Although studies have investigated the use of AT in the families of both healthy children and children with cancer, no comparison of the incidence of its use between these two populations has been published. We hypothesized that AT was used more frequently among the families of children with cancer.
Methods. Using a prevalence survey design, we interviewed 81 parents of children with cancer attending a pediatric hematology/oncology clinic and 80 parents of children attending a continuity care clinic for routine check-ups and acute care. We explored the types of AT being used, the reasons for its use, and the frequency with which it was discussed with the patient's physician.
Results. 1) Overall, 65% of the cancer group were using AT, compared with 51% of the control group. This was not statistically significant. 2) Prayer, exercise, and spiritual healing were three AT practices most often used by the cancer group, and prayer, massage, and spiritual healing by the control group. 3) Discussion of AT with the physician varied according to group, with 53% of the cancer patients discussing its use; income level, with 59% of parents in the higher income group discussing its use; and ethnicity, with 47% of whites discussing its use.
Conclusion. Use of AT is not limited to the families of children with life-challenging illnesses, but is commonly used by those of children with routine pediatric problems. Pediatricians need to be aware that their patients may not tell them about AT practices they are using in addition to prescribed treatment.
Alternative therapy (AT), also known as complementary, nonallopathic, unconventional, holistic, or natural therapy, refers to healing practices that have become increasingly popular with the general public, but are not widely accepted by the medical profession. Examples of AT techniques include therapeutic massage, acupuncture, imagery, energy healing, prayer, and use of medicinal herbs. According to 1990 data, the number of visits to practitioners of AT was greater than the number of visits to all primary care physicians nationwide.1 Reasons patients use AT include a belief that it will cure or help a condition not treatable by conventional medicine, dissatisfaction with allopathic medicine, and a desire to use more natural methods of healing.
It is estimated that Americans spend >$10 billion a year on unproven cancer remedies.2 AT is thought to be used more frequently in patients with cancer than in patients with minor illnesses.2 According to Fletcher3, between 20% and 50% of cancer patients use or consider using AT. Although much research has been conducted on its use by adults with cancer, only two previous studies have focused on its use by children with cancer and their families. In the first, Faw et al4 in 1977 investigated use of AT among families of 69 children with cancer at M D Anderson Cancer Center and reported a rate of 9% using, and an additional 6% having considered using, AT. A more recent (1994) Australian study by Sawyer5 reported that 46% of the 48 children and families studied had used at least one AT. Less than half the parents had informed their physician about it.
Neither of the two previous investigations included a control group of noncancer patients for comparison. Using a cross-sectional prevalence survey design, our study included a control group of children without cancer attending a continuity care clinic for acute care and routine check-ups. We hypothesized that the families of children with cancer use more AT than those of children without. We describe the AT techniques used in our study population, the reasons for its use, and the frequency with which AT was discussed with the patient's physician.
MATERIALS AND METHODS
The subjects of this study were 161 parents of children 0 to 21 years of age attending a university hospital outpatient clinic. Eighty-one were cancer patients attending the hematology/oncology clinic; the 80 control patients were attending the continuity care clinic for routine check-ups and acute care. A convenience sample comprising consecutive subjects seen at these clinics were asked to participate. Written informed consent was obtained.
The interviewers (T.F. and W.S.) described the study and our definition of AT to the parents. If any parents were confused about a specific AT, they could clarify the term with the interviewer. The parents completed a self-administered 30-item questionnaire that included socioeconomic and demographic items (sex, age, race, income, marital status, education, and size of community). Parents of the children with cancer were asked about the specific malignancy/diagnosis, date of diagnosis, and cancer status at the time of the survey (currently in remission or with cancer recurrence). Both study groups were asked about their use of conventional therapies for their child and their satisfaction with them. The patterns of AT use were investigated, including reasons for use, sources of information about AT, parental satisfaction, and whether AT use was discussed with their medical care providers.
The questionnaire also asked whether parents used AT to treat their own medical conditions. Parents of the control patients were asked whether they would use AT if their child had a curable or incurable form of cancer. In addition to multiple choice and yes/no questions, parents were encouraged to answer open-ended items concerning comments about AT and about this study. Before completion, parents had an opportunity to discuss the questionnaire.
Statistical analyses were performed with the Statistical Analysis System (SAS Institute, Cary, NC). Contingency tables were constructed, and χ2 statistics were used to test the association between study group and categorical factors. To adjust for differences in the distribution of sociodemographic characteristics of the case and control groups, we performed multivariate analyses using logistic regression. The use of specific AT techniques were recorded as a set of dichotomous variables. Family income, ethnicity, and marital status were associated with AT use. We adjusted the group comparisons by ethnicity, family income, and marital status.
The control patients attended clinic most often for otolaryngeal (ear, nose, throat) or skin problems or for routine check-ups. Among the cancer patients, the most common malignancy diagnosis was leukemia (30%), followed by Ewing's sarcoma (22%) (Table1).
The two groups were similar with regard to patient sex, parental education, or community size. The distribution for ethnicity, family income, and marital status, however, differed (Table2). There were more white families in the cancer group than in the control group. Also, more than half of cancer families earned >$20,000, compared with only 25% of the control families in this same income bracket. Overall, 65% of the cancer group and 51% of the control group were using some form of AT. When prayer was excluded, 42% of the control group and 45% of the cancer group were using AT.
Table 3 shows the number in each group using different AT practices after adjusting for income. We observed significant differences between the control and cancer groups after adjusting for ethnicity, income, and marital status for three types of AT techniques: massage therapy (P = .0013), folk remedies (P = .058), and prayer (P = .014). The most common AT for both groups was prayer. Of the cancer group and control groups, 64% (52/81) and 40% (32/80), respectively, reported its use. The next two types of AT most often used were massage therapy (25%) and spiritual healing (21%) by the control group and exercise (16%) and spiritual healing (16%) by the cancer group. Medicinal herbs and megavitamins combined were used by 16% (13/81) of cancer patients and 10% (8/80) of controls. Neither group used hypnosis as an alternative therapy.
Reasons for AT Use and Sources of Information
Parents gave several reasons for the use of AT, most commonly a faith in the healing powers of prayer or a belief in the specific therapy (Table 4). However, 60% (97/161) of parents did not provide specific reasons. Only 5 stated a dissatisfaction with conventional therapy. We found no association between parental dissatisfaction with conventional medicine and use of AT (P = .38). Among patients using AT, 59% (30/51) of parents of children with cancer and 56% (23/41) of control parents had most often obtained information about AT from family and/or friends (Table 5).
Communication With Physician
Parents were asked whether they informed their physician about giving their child alternative therapy (Tables6 and 7). Among patients using AT, only 22% (9/41) of the control group compared with 53% (27/31) of the cancer group had discussed AT use with their physician. Families of controls with an income of <$20,000 or non-white controls were less likely to discuss the use of AT with their physician.
The number of parents using AT for their own ailments did not differ between cancer and control groups, but parents who themselves used AT were more likely to use it for their children. Seventy-three percent of parents in the cancer group and 92% of parents in the control group who used AT were likely to give their children AT. Of the control parents, 32% said they would use AT if their child had cancer, regardless of whether the cancer was considered curable by conventional therapy.
This study compares the use of AT between a cross-sectional sample of families of children with cancer and a population of children being seen for routine care. Our data show that use of AT is not limited to children with life-challenging illnesses, but is commonly practiced by those with routine medical problems.
The definition of AT is controversial. The word alternative is misleading, implying a therapy used instead of or in place of conventional therapies. It may also carry a pejorative tone, implying a therapy inferior to conventional treatment. Many AT techniques may be considered part of standard medical therapy. For example, relaxation techniques, imagery, and self-hypnosis are frequently taught by oncology personnel to assist children with painful procedures. Although some of these therapies are used in our hospital, it is interesting to note that massage therapy and relaxation techniques were used more often in our control group than in our cancer group. Many parents questioned the inclusion of prayer as an AT. We included it when it was being used specifically to treat illness, because few physicians prescribe prayer or consider it part of standard therapy. Religion and spirituality are not consistently addressed in medical school curricula, and even may be considered inappropriate teaching subjects.6 However, physicians are beginning to recognize the role of spirituality and prayer in the healing practices of their patients, as indicated by conferences sponsored by the National Institutes of Health.7,8
In this study, we investigated use of AT as an adjunct to conventional therapies. By definition, none of our subjects had refused standard medical treatment, although we did no formal compliance assessment. We defined AT as any practice not prescribed by a physician or not considered a proven medical treatment. Different definitions of AT may explain different results across studies. Although we excluded over-the-counter medications, we did not limit our definition to specific AT techniques, as may have been the case in previous studies. We found that children attending a general pediatric clinic were using AT much more often (51%) than those in a 1994 Canadian study (11%)9 that defined AT as being provided by a practitioner, thus excluding home remedies, prayer and exercise, and other commonly used therapies. After excluding the latter from our analysis, however, 39% of our patients still were using AT, which remains a rate higher than that in the Canadian study.
There were also differences in types of AT practices in our study compared with others. The Canadian patients were more likely to use homeopathy, naturopathy, and acupuncture,9 and the Australians hypnotherapy, mental imagery, and relaxation.5Our patients used prayer, massage, spiritual healing, and relaxation most often and acupuncture or homeopathy rarely. Whereas spiritual healing was often used by our cancer group, they were used by only a small percentage of Australian patients. These differences may be attributable to cultural or ethnic factors, and might be investigated further by cross-cultural surveys.
Prayer was used by many in both our groups, but significantly more in the cancer group. The ordeal of having a child with cancer may lead parents to embrace formal or informal spiritual practice for comfort and strength. Prayer as therapy has been studied widely, and the evidence is mixed. Marwick7 reviewed 115 articles on prayer and health outcome: 37 showed a positive effect, 47 a negative effect, and 31 showed neither. King and Bushwick6 found that many patients wished their physicians would ask about their spiritual lives. According to their results, 48% expressed they would like their physician to pray with them, and 42% believed that a physician should ask patients about spiritual experiences.6
These findings suggest that many Americans use prayer and faith healing as a therapeutic adjunct. Discussions of spiritual practices may improve well-being and compliance. In a much reported study, Byrd10 conducted a randomized, double-blind study of 393 patients, in which patients on the University of California, San Francisco, coronary care unit were prayed for by various religious groups who had only their first name and a brief description of their condition.10 The test patients and families did not know they were being prayed for. Fewer patients in the prayed-for group died, and significantly fewer developed pulmonary edema, received antibiotics, or needed intubation. The researchers concluded that the prayed-for group endured less suffering. Although this study has been criticized for its design, it shows the important role that prayer may play in illness.8
Given the high frequency of AT use, physicians should make a habit of asking their patients about it. Several studies have shown that parents fear telling their doctors that they are practicing AT. Although such discussions may seem difficult, Spigelblatt emphasizes an approach that may help physicians open communication lines.9 She suggests that 1) physicians inquire regularly about AT; 2) such inquiry be made in a nonjudgmental manner; and 3) the physician be knowledgeable about the implications of AT use. This means developing a working knowledge of a rapidly growing literature. Patients may have misperceptions about AT that the physician can clarify; doctors should also be prepared for patients to present literature and ask for advice.
About half of 120 US medical schools now include course work on AT and other integrative health approaches, thus new physicians will have a greater knowledge of this major trend in self-care by the public. Pediatricians need to realize that many children and their families are practicing AT, and that such use is not limited to life-challenging illnesses such as cancer. As its use continues to rise, only through scientific research and effective communication can care givers serve their patients optimally.
Downer found that patients using AT were significantly more anxious than those using only conventional therapy.11 Patients may turn to AT out of anxious or hopeless feelings, perhaps from an unfavorable prognosis. Fletcher believes imparting hope is a professional responsibility of physicians,3 because pessimism may lead patients to seek AT out of a false sense of hope in its efficacy.3,11 This does not imply that physicians need be deceptive and so undermine trust in situations involving unfavorable prognoses. Parents in our study did not turn to AT because of dissatisfaction with conventional medicine, but rather because of beliefs in its efficacy. As with Sawyer's Australian study5 and Downer's English study,11 parents felt a strong urge to help their children in ways unique to them to counter their own feelings of helplessness.
A potential limitation of our study is that the control patients did not have serious illnesses. Future studies should consider matching cancer and control groups more closely in terms of illness severity and chronicity, perhaps comparing cancer with cystic fibrosis, diabetes, or transplant patients. Cross-cultural studies of patients with similar cancer diagnoses and treatment modalities are also needed. Studies should also compare patients who seek AT practitioners with those who self-administer AT.
Another limitation of our study was that it was cross-sectional. Large-scale longitudinal prospective studies would reflect changes in the use of AT as a function of changes in the patient's status. Our study also did not evaluate compliance or outcomes. Differences in both compliance and illness outcome among AT users and non-AT users are of obvious importance.
This work was supported by a grant from the Florida Chapter of the American Cancer Society.
We thank Robert Christensen, MD, and Sandra Juul, MD, for their comments. In addition, we thank the staffs at the Pediatric Hematology/Oncology Clinic, Pediatric Continuity Care Clinic, and Pediatric Neuro-Oncology Program for their help.
- Received February 17, 1997.
- Accepted July 14, 1997.
Reprint requests to (J.G-P.) University of Florida, Department of Pediatrics, Division of Hematology/Oncology, PO Box 100296, Gainesville, FL 32610-0296.
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- Copyright © 1997 American Academy of Pediatrics