148 Journal of Pain and Symptom Management Vol. 32 No. 2 August 2006

Original Article

Complementary and Alternative MedicineUse and Quality of Life in Patientswith Primary Brain TumorsTerri Armstrong, DSN, APRN, BC, Marlene Z. Cohen, RN, PhD, FAAN, KennethR. Hess, PhD, Rochelle Manning, RN, Eva Lu T. Lee, MSN, APRN, BC,Geline Tamayo, MSN, APRN, BC, Karen Baumgartner, MSN, APRN, BC,Sur J. Min, MSN, APRN, BC, Alfred Yung, MD, and Mark Gilbert, MDThe University of Texas M. D. Anderson Cancer Center (T.A., M.Z.C., K.R.H., R.M., E.L.T.L., G.T.,

K.B., S.J.M., A.Y., M.G.) and Health Science Center School of Nursing (T.A., M.Z.C., E.L.T.L.),

Houston, Texas, USA

AbstractThis study explored the use of complementary and alternative medicine (CAM) approachesand their relationship with demographic and disease characteristics and quality of life(QOL) in the primary brain tumor (PBT) population. One hundred one PBT patients wereenrolled in this study. The results showed that 34% of patients reported using CAM. Forty-one percent reported using more than one type of CAM. The average cost of each CAM usedper month was $69, with 20% of patients spending more than $100 per month. Themajority (74%) reported that their physicians were unaware of their use of CAM. Dataanalysis found a higher performance status to be the only factor significantly related to use ofCAM therapy (P< 0.005). There was no difference in patient report of QOL between usersand nonusers of CAM therapies. The high number of patients who do not report CAM usehas potential implications for evaluation of symptoms and response to therapy in thispopulation. This may be especially relevant in those patients with higher functional statusparticipating in clinical trials. J Pain Symptom Manage 2006;32:148e154. � 2006U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

Key WordsQuality of life, complementary medicine, brain tumors

IntroductionComplementary and alternative medicine

(CAM) refers to those health care practicesand products that are not considered part of

Address reprint requests to: Terri S. Armstrong, DSN,APRN, BC, Department of Neuro-Oncology, M. D.Anderson Cancer Center, Box 431, 1515 HolcombeBlvd., Houston, TX 77030, USA. E-mail: Tsarmstr@mdanderson.org

� 2006 U.S. Cancer Pain Relief CommitteePublished by Elsevier Inc. All rights reserved.

conventional medicine. CAM includes alterna-tive medical practices and energy therapies(such as naturopathic medicine and therapeu-tic touch), mind-body interventions (such asprayer and meditation), biologically-basedtherapies (dietary and nutritional supple-ments), and body-based methods (massage).The use of CAM therapy is increasingly com-mon in the general population1 and in thosewith cancer.2,3 Patients with cancer often seekout CAM therapies in an effort to extend life

0885-3924/06/$esee front matterdoi:10.1016/j.jpainsymman.2006.02.015

Vol. 32 No. 2 August 2006 149CAM Use and Quality of Life in Patients with PBTs

and combat side effects associated with the dis-ease or treatment.4 Given that primary braintumors (PBTs) often are associated with bothneurologic sequela and a grim prognosis,CAM use may be prevalent in this population.However, the use of CAM in patients with PBTshas not been fully explored.

The use of CAM in the general populationof the United States has been the focus of sev-eral studies. Eisenberg et al. found that theprevalence of the use of CAM therapies inthe general population increased from 34%in 1990 to 42% in 1997.1 Sociodemographicvariables that have been found to be relatedto CAM therapy use in Americans include so-cioeconomic status and education level, withmiddle class Caucasians of higher than averageeducation the most common users.5e9

Several studies have explored the use ofCAM therapies by patients with solidtumors.2e5,8,10e13 CAM use in cancer patientshas been reported between 9% and 83%, high-lighting the variability in use among patientswith cancer.4,5,8,13 Most studies have shownthat women with cancer are more likely thanmen to use CAM therapies.5,7 Better educatedpersons and those with above average incomesalso are relatively more likely to use a CAMtherapy.14 Most studies have been in specificcancer populations, such as breast and pros-tate cancer, and have not included PBT pa-tients.10,11,14e16 In one study by Lerner andKennedy, which was commissioned by theAmerican Cancer Society, the highest use ofalternative therapy was seen in patients withcentral nervous system (CNS) cancers (21%).However, only 14 patients participating inthis study were diagnosed with PBTs and thefindings may not reflect the CAM use ina larger cohort.4

Studies specifically looking at the use ofCAM therapies in patients with brain tumorsare limited. Only two studies to date have ex-plored the use of CAM therapies in the PBTpopulation.17,18 Fox et al. retrospectively re-viewed data on CAM use among participantsin the Glioma Outcomes Project, and re-ported that nearly 32% of participants usedCAM and that the use was significantly corre-lated with quality of life (QOL).18 This studywas limited to patients with high-gradegliomas and did not report functional statusof the participants. Furthermore, a single

question regarding QOL was used, potentiallylimiting the analysis.

Verhoef et al. evaluated the use of alterna-tive therapy, associated costs, and relationshipto QOL in brain tumor patients living in Al-berta, Canada.17 The authors specifically de-signed a tool to evaluate CAM use for thisstudy. The tool was evaluated for clarity and in-ternal consistency among a group of brain tu-mor patients. In the study, 24% of thesepatients were using CAM. This group repre-sented half of the patients who indicatedknowledge of the availability of such therapies.QOL scores in patients were found to be lowerin patients using CAM therapies in the do-mains of physical and functional well-being.A limitation of this study was the lack of vari-ability of the sample, which comprised primar-ily educated, white males living in Alberta,thereby restricting the generalizability of theresults to patients in the United States or ofvaried cultural backgrounds.

In summary, CAM use is common in patientswith cancer. Clinicians report an increase inCAM therapy use in cancer patients overall.In response to the brain tumor patient popula-tion seeking information regarding CAMtherapies, several national brain tumor organi-zations and Internet sites now provide infor-mation to patients regarding these therapies.This emphasizes the increased interest inCAM therapy use in the PBT patient popula-tion. However, the use of CAM in this popula-tion in the United States has not been fullydescribed, nor has the relationship betweenthe use of these therapies and QOL and func-tional status been documented. These factorsmay be critically important as we evaluatenew treatment modalities and strive to im-prove the lives of PBT patients.

The purpose of this study was to describethe use of CAM therapy in patients withPBTs and determine if CAM use is correlatedwith measures of QOL. The awareness andprevalence of use of CAM therapy by patientswith PBTs was assessed and the relationshipbetween CAM use and QOL was evaluated. Ad-ditionally, patient characteristics associatedwith the use of CAM use were determined;the cost of CAM therapies in this patient pop-ulation was measured; and patients’ percep-tions of physician attitudes toward CAM usewere described.

150 Vol. 32 No. 2 August 2006Armstrong et al.

MethodsStudy Sample and Design

The study was a prospective, cross-sectional,descriptive survey. Participants were a conve-nience sample of 101 adult patients withPBTs presenting to the neuro-oncology outpa-tient clinic of a large comprehensive cancercenter in the southwest United States for initialconsultation. Ninety percent of eligible pa-tients were approached about participation inthe study. Only one patient approached de-clined participation. All forms were completedimmediately after consent and reviewed forcompleteness by the principal investigator. Ad-vanced practice nurses completed all the clini-cal information, including rating of KarnofskyPerformance Status (KPS).

InstrumentsFour tools were used to collect data: a demo-

graphic data tool, the Functional Assessmentof Cancer Therapy-Brain (FACT-BR), a CAMtherapy questionnaire, and a clinical informa-tion sheet. The demographic data tooldescribed the sample in relation to sex, ethnic-ity, age, level of education, marital status, reli-gious background, employment status, andincome. These data were used to determinepotential variables that may be related toQOL and CAM therapy use.

The FACT-BR subscale was designed ina self-report format, but can be administeredvia interview. The FACT-BR, developed by Cel-la et al.,19 consists of 33 ordinal scales coveringfive subscales (social/family well-being, physi-cal well-being, and relationship with doctor,emotional well-being, and functional well-being). The respondent is instructed to circlea number in response to a statement. Likert-type responses range from 0 (not at all) to 10(very much). Statements are worded bothpositively and negatively to facilitate reliableresponses. The questions are written at thesixth grade reading level. Convergent and dis-criminant validity, divergent validity, and inter-nal consistency were all established in an initialstudy.19 The FACT-BR was established as a validtool to measure QOL in patients with malig-nant brain tumors.20 In addition, test-retestcorrelation coefficient for the FACT-BR ishigh (r¼ 0.78; P< 0.001).

The third instrument was the CAM therapysurvey. Verhoef et al. developed this tool specif-ically for brain tumor patients because of thelack of information in the field.17 Verhoefet al. piloted the CAM therapy use tool ina group of 20 volunteer patients to establishcontent validity, and to clarify items and sen-tence structure. It was found valid and reliablein an initial study.17

The fourth instrument, the clinical assess-ment tool, includes information on disease sta-tus (i.e., improved, stable, recurrent) andtreatment status (i.e., first postoperative visit,first postradiotherapy visit, postchemotherapyvisit, or routine follow-up visit). This was adop-ted from the tool developed by Verhoef et al.17

in their study of CAM therapy use in patientswith brain tumors.

Data AnalysisWe fit a single multivariate logistic regression

model with what we considered to be the 13 keycovariates in the study: KPS, religion, employ-ment, age, education, marital status, sex, house-hold income, and five QOL measures (familywell-being, emotional well-being, functionalwell-being, Functional Assessment of CancerTherapy-Brain or FACT-BR, and FACT-G). Wemodeled KPS, age, education, and the QOLscores as continuous covariates in the model.We modeled religion as Catholic, Protestant,or other; marital as married vs. other; employ-ment as full time vs. part time vs. homemakervs. other; and household income as >$50K vs.other. We used likelihood ratio test P-values toassess significance and the odds ratios to assessthe magnitude and direction of effect for eachcovariate adjusted for the others.

ResultsSample Characteristics

Tables 1 and 2 summarize the demographicand clinical characteristics of the sample. Thesample was primarily composed of Caucasians.Participants were more likely to be employedthan unemployed. The majority reported thatthey were married and had incomes of>$50,000 per year. Other ethnic groups wererepresented, but not in large enough num-bers, to allow for comparison on CAM use byethnic group.

Vol. 32 No. 2 August 2006 151CAM Use and Quality of Life in Patients with PBTs

Clinically, patients were more likely to havehigh-grade tumors rather than low-grade tu-mors, and to have some degree of neurologicaland functional impairment. Nine patients hadno treatment except a diagnostic surgical pro-cedure. The majority had received prior radia-tion and/or chemotherapy, with 59 either onactive treatment or having completed treat-ment within 6 months.

CAM UseOf the patients who participated, 54 of 101

(54%) patients had heard of CAM therapies,with the primary source being the Internet orfamily/friends. Thirty-four percent (CI:25%e44%) reported using CAM for their tu-mors, with 14 of those people guided by an al-ternative medicine practitioner. Of those using

Table 1Patient Characteristics

Age (years)Median 43Range 21e76

Sex (n)Female 56Male 45

Education (years)Median 14Range 3e17

State of residency (n)Texas 53Other 19

Ethnicity (n)White non-Hispanic 82Hispanic 10Black 4BlackþHispanic 2Pacific Islander 2Native American 1

Marital status (n)Married 75Divorced 15Single 10Separated 1

Religion (n)Catholic 31Protestant 63Other 7

Yearly income (n)<$30,000 24$30,000e50,000 17>$50,000 60

Employment status (n)Unemployed as a result of tumor 19Employed part time 49Employed full time 19Retired 2

CAM, 13 (41%) reported using more than onetype of alternative therapy. Table 3 lists themost frequently reported types of CAM.

The average cost of each CAM used permonth was $69 (range between $0 and $600per month). Seven patients (20%) reportedspending more than $100 per month onCAM therapies. Greater than 98% of these pa-tients paid for use out of their own pocket orby family members.

Among the 34% who reported using CAM,88% expressed satisfaction, stating that it washelpful and contributed to tumor shrinkage.The majority (74%) reported that their physi-cians were unaware of their use of CAM. The

Table 2Clinical Characteristics

Tumor Histology (n)

High gradeGlioblastoma multiforme 39Anaplastic glioma 31Atypical meningioma 1CNS lymphoma 3Medulloblastoma 2

Low gradeLow-grade glioma 19Ependymoma 2Neurocytoma 2Germinoma 2

KPSMedian 90Range 50e100

Neurologic function scoreMedian 1Range 0e4

Surgical procedures (n)One 65Two 31Three 5

Radiation therapy (n)Underwent therapy 64Completed therapy <6 months prior 34

Chemotherapy (n)Underwent therapy 59Currently undergoing therapy 25

Table 3Types of CAM Used

No. of Patients

Prayer 14Vitamin/herb supplements 8Herb supplements 7Shark cartilage 6Essiac 5Green tea 3Faith healing 2

152 Vol. 32 No. 2 August 2006Armstrong et al.

most common reasons listed for CAM use in-cluded: being proactive in fighting their dis-ease, improving QOL and minimizing sideeffects, and continuing pretumor usage.

The multivariate logistic regression modelindicated that increasing KPS (P¼ 0.007),and higher scores on physical well-being(0.0197) were associated with CAM use. Thismodel explained about 20% of the variationin CAM use. The large confidence intervals as-sociated with religion and employment statuslimit the interpretation of the impact of thesevariables association with CAM use.

DiscussionOur study found that one-third of PBT pa-

tients, regardless of degree of tumor malig-nancy or treatment regimen, reported CAMuse. This percentage of patients using CAM issimilar to use reported by patients with othertypes of solid tumors. In general, patientswith more malignant tumors are often thoughtto be more likely to try CAM therapy. Surpris-ingly, the grade of tumor malignancy did notcorrelated with CAM use in this study. Thisfinding is limited by the fact that patientsparticipating only in traditional medicine ata tertiary medical center are included. Perhapspatients with more malignant tumors are morelikely to use only alternative therapies.

Most patients reported that their physicianswere unaware of their CAM use, and potentialinteractions with other therapies may be im-portant. Recent work has shown that certainmedications and therapies considered asCAM (i.e., St. Johns’ Wort) may augment themetabolism of medications by induction ofthe cytochrome P450 enzyme system.21 Similarfindings in patients on anticonvulsants whichuse the P450 enzyme system resulted in in-creased clearance of chemotherapy, therebydecreased the amount of active drug availableto the patient.22 This potential interaction maythen impact response to therapy in patients us-ing CAM and limit the appropriate evaluationof new therapies.

The cost of CAM therapy to patients may besignificant. In this study, patients reportedspending up to $600 per month on CAM outof their own pocket. Based on their review ofCAM therapy use in the U.S. population in1993, Eisenberg et al. estimated that

Americans made an estimated 425 millionvisits to providers of unconventional therapy,exceeding the number of visits to all U.S. pri-mary care physicians (388 million).1 In 1990,the costs of such therapies were estimated tobe $13.7 billion dollars, with three-quarters ofthese expenses being paid out of pocket andexceeding the out-of-pocket expense paid an-nually for all hospitalizations in the UnitedStates. These data emphasize the importanceof cost evaluation in research describingCAM therapy use. In Verhoef et al.’s study,only 37% of participants responded to thequestion about average cost. Of those who re-sponded, the average monthly amount spenton CAM therapy was $55 a month with 65%of respondents paying for all costs out ofpocket. The investigators stated that this num-ber was grossly underestimated, underscoredby personal knowledge of two participants pay-ing $20,000 for a single procedure.17 All pa-tients participating in this study who reportedCAM use also reported the associated cost.

Surprisingly, the only clinical or demo-graphic characteristic found to be related toCAM use was performance status, with patientswith higher KPS more likely to use CAM ther-apy (Table 4). This is again contrary to theidea that patients who are ‘‘doing poorly’’ aremore likely to seek out CAM therapy to assistwith symptom management. Since this studycollected data at only one time point, the rela-tionship between CAM use and KPS cannot befully understood. Is it that the use of CAM im-proved KPS or that patients with higher KPSwere more likely to use CAM? This finding war-rants further longitudinal investigation. Thisfinding may have important consequencesfor those patients participating in clinical trialsinvestigating new agents. As a high KPS is oftenrequired for study participation, these patientsshould routinely be questioned regarding theuse of CAM therapies. Patients participatingin clinical trials also may be pursuing CAMtherapies. These findings are consistent withCAM use in patients with other solid tumorsparticipating in clinical trials, with a recentstudy finding that 63% of cancer patients par-ticipating in clinical trials at the NIH reportedusing one or more CAM therapies.3

A comprehensive review of the brain tumorliterature revealed few studies looking at QOLin PBT patients.23 Most studies have used

Vol. 32 No. 2 August 2006 153CAM Use and Quality of Life in Patients with PBTs

Table 4Demographic/Disease Characteristics and CAM Use

Characteristic Beta SE OR LCL UCL P-value

KPS 0.1074 0.0388 1.1133 1.0317 1.2014 0.007Protestant vs. Catholic 1.0221 0.6122 2.7792 0.8372 9.2255 0.0987Other religion �1.6342 1.3458 0.1951 0.014 2.7279 0.228PT vs. FT employment 0.4789 0.6425 1.6142 0.4582 5.6868 0.4963HM vs. FT employment 0.994 0.879 2.7021 0.4825 15.1322 0.2613Other employment vs. FT 0.6188 0.9056 1.8567 0.3147 10.9537 0.4963Age 0.012 0.0225 1.0121 0.9684 1.0578 0.5942Education �0.0461 0.0933 0.9549 0.7954 1.1466 0.6226Marital status 0.1642 0.7266 1.1785 0.2837 4.8952 0.8217Gender (female vs. male) 0.249 0.6025 1.2827 0.3938 4.1778 0.6805Household income �0.5159 0.6298 0.597 0.1737 2.0514 0.4151FACT physical well-being �0.1464 0.0616 0.8638 0.7656 0.9746 0.0197FACT family well-being 0.0049 0.095 1.0049 0.8342 1.2105 0.959FACT emotional well-being 0.1239 0.1014 1.13619 0.9279 1.3808 0.225FACT functional well-being �0.0012 0.0662 0.9988 0.8774 1.1371 0.9859FACT-BR 0.0032 0.0342 1.0032 0.9381 1.0728 0.9261

SE¼ standard error of beta; OR¼ odds ratio; LCL¼ lower 95% confidence limit; UCL¼ upper 95% confidence limit; P-value¼ probability value;PT¼ part time; FT¼ full time; HM¼ homemaker.

indirect measures of quality such as theKPS.24e28 A common finding of all these stud-ies, regardless of treatment, was that functionalstatus and QOL was maintained for a period oftime and was followed by a rapid decline beforedeath. In prior studies of CAM use in patientswith solid tumors, a primary reason for CAMuse has been to improve QOL. In this study,overall self-reported QOL was not significantlydifferent between users and nonusers of CAMtherapies. However, those reporting improvedphysical well-being had higher use of CAMoverall. The psychological impact of CAM useon feelings of hope and overall QOL is impor-tant and warrants further investigation.

Finally, patients expressed satisfaction withCAM use, stating that they found it helpful;the majority of those using CAM reportingthat they felt it contributed to tumor shrinkage.The majority of patients (74%) did not sharetheir use of CAM with their health care pro-vider. Anecdotally, several patients said the phy-sician ‘‘didn’t ask,’’ that they did not considerthese therapies ‘‘medicine,’’ and they thoughtit not important enough to share. Others indi-cated that they were afraid that the physicianwould be ‘‘angry’’ or perhaps hold medicaltreatment. Tasaki et al.29 identified threethemes that described barriers to unsuccessfulcommunication about CAM in their study of143 patients with cancer. This included pa-tients’ perspective of physicians’ indifferenceor opposition toward CAM use, physicians’ em-phasis on scientific evidence, and patients’

anticipation of a negative response from theirphysician. The current study did not explorewhy patients did not communicate about theirCAM use. Understanding the reasons patientsdo not communicate this information will becrucial to bridge this gap between patientsand providers of traditional medicine andshould be the focus of future studies in thePBT population as well.

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