Alternative and Complementary Treatment Needs and Experiences of Women with Breast Cancer

Abstract

Objectives:

The study objectives were to explore the potential need for and use of complementary and alternative (CAM) services among women diagnosed with breast cancer and to investigate reasons for nonreceipt of CAM.

Design:

The Alaska Breast Cancer Needs Assessment Survey was completed by female breast cancer survivors in Alaska. The survey assessed physical and psychologic symptoms, services received, satisfaction with treatment, communication with providers, and informational needs. Survey responses were obtained from 309 women with breast cancer, with a mean age of 56 years and high level of education.

Results:

Results revealed that most breast cancer survivors have significant needs for CAM services, and yet only a small proportion actually receives them. For example, virtually all women reported symptoms potentially amenable to treatment via individual counseling or nutritional interventions; however, only 29% and 45%, respectively, received such services. Women who did and those who did not receive CAM services (e.g., counseling, massage, meditation, and supplementation) generally did not differ in terms of their need for such services as measured via symptoms that could be supported by these interventions. However, the majority failed to be referred for such treatments or were unable to access them if referred.

Conclusions:

Results suggest that while access to services played a small role in nonreceipt of CAM services, the largest reason for CAM nonreceipt was failure to recognize their potential benefit on the part of providers and at least some patients. Raising awareness about the potential value of CAM among care providers for women with breast cancer is crucial, as it will likely lead to more CAM acceptance and utilization. Once providers accept and refer for CAM, patients' quality of life may be considerably enhanced, as the extant literature has demonstrated the potential value of CAM for breast cancer survivors.

Introduction

C ancer is the second leading cause of death in the United States; breast cancer ranks highest for incidence and second for mortality compared to all other cancers for women. Nationwide, in 2007, 202,964 women were diagnosed with breast cancer and 40,598 died from it.¹ Of women diagnosed with breast cancer each year, 89.1% will survive the disease for at least 5 years.² National Cancer Institute estimates that more than 2.6 million women previously diagnosed with breast cancer are alive currently nationwide, making women with a history of breast cancer the largest group of cancer survivors.³ Although these women may be disease free, their cancer diagnosis and treatment course can have ongoing physical and psychologic effects on their lives and well-being. A reduction in quality of life was found not only after initial treatment, but also remained an issue in long-term survival.⁴

After treatment, most women are faced with physical, psychosocial, and other concerns associated with living with or having survived breast cancer and often are challenged with successfully adjusting to survivorship. They experience an array of physical and emotional concerns, as well as physical symptoms that include fatigue, difficulty sleeping, pain, hot flashes, sexual dysfunction, weight gain, difficulty remembering things, breast symptoms related to pain and oversensitivity, skin problems, and poor concentration.^5
–7 Psychosocial consequences of breast cancer among women include fear of recurrence, body image disruption, sexual dysfunction, treatment-related anxieties, intrusive thoughts about illness/persistent anxiety, difficulty with marital/partner communication, feelings of vulnerability, and existential concerns regarding mortality,^6,8,9 as well as anxiety or depressive disorders.¹⁰

A growing literature about complementary and alternative treatments for breast cancer suggests that complementary and alternative medicine (CAM) is particularly useful in addressing the symptoms noted above. A variety of counseling interventions have been shown to be valuable in supporting positive adjustment to the diagnosis of breast cancer, elevating mood and reducing stress, enhancing coping skills and life quality, and preserving positive sexual relationships with spouses and positive family relationships in general.^11

–15 Enhanced coping skills and cognitive or acceptance-based strategies supporting the ability to problem-solve are correlated with long-term reductions in perceived stress, distress, and fatigue associated with breast cancer, making a strong argument for counseling interventions that emphasize positive strategies (e.g., acceptance and commitment therapy, mindfulness-based stress reduction).¹⁶ Relatedly, individual and review studies of various meditative practices have revealed them to be helpful with emotional and physical symptoms experienced by breast cancer survivors. Mindfulness-based meditation was particularly useful in addressing stress- and mood-related (such as anxiety) symptoms across the treatment and survivorship spectrum, while also enhancing adjustment to a breast cancer diagnosis among women.^17
–19 Similarly, transcendental meditation, a related but different type of meditation, was found to improve not only mood or emotions, but social functioning and overall quality of life among breast cancer survivors.²⁰ Recent work even provides evidence that meditative practices can ameliorate cognitive dysfunction that often follows chemotherapy among women surviving breast cancer.²¹

Physical strategies have also been found to enhance physiologic, cognitive, and emotional functioning among women with breast cancer. For example, massage has been shown to increase women's immune response and endocrine function, with commensurate enhancements in mood,²² as well as ameliorating pain and fatigue.²³ Yoga interventions have been shown to decrease pain and fatigue while increasing acceptance and relaxation among women with metastatic breast cancer.²⁴ Yoga modulates stress hormones²⁵ and results in better physical and mental functioning of women with breast cancer, enhancing their general quality of life.^26
–28 Finally, a large meta-analysis of 65 clinical trials assessing the helpfulness of various nutritional strategies and supplementation to breast cancer survivors concluded recently that these interventions support the physical and mental health of these women, supporting the notion that such strategies should be recommended at all stages of treatment and aftercare.^29
–31

Vivar and McQueen found that breast cancer survivors experience informational and emotional needs during survivorship that are often unmet by oncology teams.³² Patients rely on their physicians to provide them with social, interpersonal, informational, and decisional support.³³ However, providers reportedly do not understand their patients' needs, fail to consider psychosocial support as integral parts of care, are unaware of complementary health care resources, and fail to recognize, adequately treat, or refer patients to services that would be helpful.³⁴ The current study explored whether women who displayed symptoms that may have benefited from CAM services received such services. It investigated reasons for nonreceipt of such services and offers recommendations based on findings.

Materials and Methods

Participants

A total of 309 participants were recruited in Alaska over a 6-month period beginning in December 2008. All participants were women, Alaska residents, had a diagnosis of breast cancer, and were at least 18 years of age. Average age was 56 years (standard deviation=9.59) and ranged from 30 to 86 years. At the time the survey was completed, women younger than 50 years old accounted for 26.1% of the sample; 73.8% were 50 years and older. With regard to cultural background, 84.8% identified as white, 7.8% as Alaska Native, 1.6% as American Indian/Native American, and 5.8% as Other. The majority of women resided in urban Alaska (80%), were well educated (with at least some college education), and were employed (at least part-time) with a median annual household income between $70,000 and $79,000. More than half of the participants were diagnosed within the past 5 years, and combined they had a median age at diagnosis of 49 years. Just over half were diagnosed during early stages of breast cancer (stage 0: 12.5%; stage 1: 41.2%); for almost half (47.7%) this was their first time dealing with breast cancer; and a majority (72.3%) reported that their physician indicated there was no longer any evidence of cancer.

Instrumentation

For purposes of a larger needs assessment with women who had been diagnosed with breast cancer, the authors developed the Alaska Breast Cancer Needs Assessment Survey with six domains, one each for Treatment and Services, Communication with Providers, Physical Well-being, Psychological Well-being, Daily Living, and Relevant Demographics and Disease History.³⁵ Under each domain, individual items were generated based on literature reviews or adapted from three existing instruments: the Living Beyond Breast Cancer–Advanced Breast Cancer Needs Assessment Survey,³⁶ the Cancer Survivors' Unmet Needs Measure,³⁷ and the LIVESTRONG Survey for Post-Treatment Cancer Survivors.³⁸ A draft of the survey was pilot tested with relevant stakeholders until these cognitive interviews suggested that each domain was fully captured and understandable. Within each section, items assessed needs, experiences, satisfaction, and desire for additional information as relevant.

Relevant to the current study, items were extracted assessing receipt of and satisfaction with alternative and complementary treatments (namely, individual [for self or significant other], family, couples, and child counseling; as well as nutritional strategies [dietitian or nutritionist services], meditative strategies [meditation, relaxation, or imagery], supplements, and physical strategies [massage, exercise, and yoga]). If a particular treatment was not received, information was extracted about reasons (personal refusal, lack of access, or nonreferral). Items were also extracted that asked participants to identify duration of symptoms and side-effects related to physical (22 symptoms) and psychologic well-being (23 symptoms). For each symptom, respondents identified whether it had never been a problem, been a short-term problem, been a long-term problem that did or will go away, or been a long-term problem that might not go away. A copy of the survey can be requested from the first author.

Procedures

After all procedures were approved by the University of Alaska Anchorage Institutional Review Board, the survey was posted online on December 5, 2008 and removed May 15, 2009. The survey link was publicized to a variety of sources within the breast cancer community through a number of recruitment efforts. After accessing the survey link, participants provided informed consent and completed the survey. Participants without Internet access or who preferred to complete a paper version had the option of requesting an identical hardcopy version of the survey. Hardcopy surveys were returned in a prepaid envelope and these data were entered and merged with the online data. Participants were not compensated for completing the survey.

Results

Potential benefit of CAM

Data revealed that women faced a long list of psychologic and physical symptoms during and after treatment for breast cancer. The top 10 physical concerns were fatigue (experienced by nearly 90%), hot flashes (75%), pain (74%), sleep difficulties (73%), joint or muscle pain (67%), night sweats (67%), weight change (65%), concentration difficulties (60%), hair loss (58%), and memory loss (55%). The top 10 emotional challenges were fear of recurrence (experienced by at least 87%), anxiety (83%), stress (83%), feeling overwhelmed (80%), fear of cancer spreading (80%), worrying about the future (72%), depression (68%), family member distress (63%), worries about appearance (60%), and worries about sexuality (55%). Based on their psychologic and physical symptoms, participants were categorized as either potentially benefiting or not benefiting from complementary and alternative treatments. Table 1 provides the decision tree to determine whether participants may benefit from nine different CAM treatments. Although it is likely that all of these CAM treatments would be of benefit to all participants, this categorization allowed the authors to identify and base analyses on women who would most benefit from these treatments, given their reported symptomatology.

Table 1.

Categorization of Participants Who May Benefit from Complementary and Alternative Medicine Treatments

CAM intervention deemed of benefit	Symptom reported in the physical domain	Symptoms reported in the psychologic domain
Individual counseling	N/A	If yes on any of the 23 items
Family counseling	N/A	If yes on spouse troubled, children troubled, other family troubled, stress in relationship with spouse; stress in relationship with children
Couple counseling	N/A	If yes on worries about sexuality, spouse troubled, children troubled, other family troubled, stress in relationship with spouse; stress in relationship with children
Counseling for partner	N/A	If yes on worries about sexuality, spouse troubled, stress in relationship with spouse
Counseling for child	N/A	If yes on child troubled, stress in relationship with child
Nutrition counseling	If yes on fatigue, appetite, nausea, weight gain or loss	If yes on depressed, anxious
Supplements	If yes on joint pain, sleep, vaginal dryness, loss of bone density	If yes on depressed, anxious
Physical strategies	If yes on fatigue, pain, joint pain, breathing difficulties, sleep, hot flashes, concentration, neuropathy lymphedema	If yes on overwhelmed, depressed, stressed, anxious
Meditative strategies	If yes on fatigue, pain, breathing difficulties, memory loss, concentration, sleep, hot flashes	If yes on any of the 23 items

CAM, complementary and alternative medicine; N/A, not applicable.

Based on this decision tree, women were categorized and their categorization was then plotted against services received. Tables 2 and 3 show findings for counseling and other CAM services, respectively. Findings reveal that across all CAM categories, a large number of women who would have benefited from such services for a variety of symptomatic reasons failed to receive such services. The predominant reason for nonreceipt across all potentially beneficial services was failure to receive a referral from the primary care provider, followed by personal refusal or lack of access.

Table 2.

Potential Benefit from and Actual Receipt of Counseling Services

		Individual counseling		Family counseling		Couples counseling		Counseling for spouse		Counseling for child
Service receipt		Benefit	No benefit	Benefit	No benefit	Benefit	No benefit	Benefit	No benefit	Benefit	No benefit
Received	N	78	0	9	0	17	2	8	0	14	0
	%	30.2	0	4.6	0	7.9	5.4	4.4	0	9.8	0
Not received	N	180	8	187	55	197	35	176	62	129	107
	%	69.8	100.0	95.4	100.0	92.7	94.6	95.6	100.0	90.2	100.0
Due to personal refusal	N	70	3	82^**	35	84^**	24	71^***	40	54^***	72
	%	38.9	37.5	43.6	63.6	42.6	68.6	40.3	64.5	41.9	67.3
Due to no access	N	13	0	16	1	14	1	13	8	7	6
	%	7.2	0	8.6	1.8	7.1	2.9	7.4	3.2	5.4	5.6
Due to nonreferral	N	95^*	1	82^**	13	90^***	5	90^***	12	64^***	22
	%	52.8	12.5	43.9	23.6	45.7	14.3	51.1	19.4	49.6	20.6

p-value (^* p<0.05; ^** p<0.01; ^*** p<0.001) is comparing those who may have benefitted from each of the counseling services to those who may not have benefitted (for the three different reasons for not receiving the services).

Table 3.

Potential Benefit from and Actual Receipt of Other Complementary and Alternative Medicine Services

		Nutrition		Supplements		Physical strategies		Meditative strategies
Service receipt		Benefit	No benefit	Benefit	No benefit	Benefit	No benefit	Benefit	No benefit
Received	N	123	0	84	1	131	0	76	0
	%	46.1	0	33.1	9.1	47.6	0	29.2	0
Not received	N	144	6	170	10	144	4	184	5
	%	53.9	100.0	66.9	90.9	52.4	100.0	70.8	100.0
Due to personal refusal	N	40	1	52	3	31	1	54	1
	%	27.8	16.7	30.6	30.0	21.5	25.0	29.4	20.0
Due to no access	N	11	0	14	0	18	0	20	0
	%	7.6	0.0	8.2	0.0	12.5	0.0	10.9	0.0
Due to nonreferral	N	85	2	105^**	2	97^**	0	114	1
	%	59.0	33.3	61.8	20.0	67.4	0.0	62.0	20.0

p-value (^* p<0.05; ^** p<0.01; ^*** p<0.001) is comparing those who may have benefitted from each of the CAM services to those who may not have benefitted (for the three different reasons for not receiving the services).

Receipt of CAM in the context of symptom severity

To assess whether women who received versus did not receive services differed in symptom severity (and thus potential benefit), a symptom score was calculated for each CAM service based on the number of symptoms present that would suggest that referral to such services would have benefited the patient. As the number of symptoms varied in each grouping based on indications for each type of CAM service (see Table 1), the range of scores varied as well. In analyzing these data, participants were categorized into groups based on their stated reasons for having not received a particular service (refusal, lack of access, or nonreferral). Based on these categorizations, t-tests were used to compare the mean number of symptoms of women who did not receive services for each of the three different reasons (refusal, lack of access, or nonreferral) to women who had received services. As women could choose more than one reason for not having received the service, they may have been categorized into more than one group and thus been included in more than one analysis. Findings are shown in Tables 4 and 5.

Table 4.

Comparison of Patients Receiving or Not Receiving Counseling Services

	Individual counseling	Family counseling	Couples counseling	Counseling for spouse	Counseling for child
Total possible number of symptoms	23	5	6	3	2

		Mean number of symptoms	Mean number of symptoms	Mean number of symptoms	Mean number of symptoms	Mean number of symptoms
Received service		14.2	3.6	3.3	2.5	1.7
Did not receive service due to:	Personal refusal	10.5^**	1.9^*	2.3^*	1.2^**	0.5^**
	Lacked access	15.0	2.5	3.5	2.1	0.8^*
	No provider referral	13.4	2.8	3.5	1.8	1.1^*

p-value (^* p<0.05; ^** p<0.01; ^*** p<0.001) is comparing those who received services in each of the categories individually to those who did not receive services for the three different reasons.

Table 5.

Comparison of Patients Receiving or Not Receiving Other Complementary and Alternative Medicine Services

	Nutritional strategies	Supplements	Physical strategies	Meditative strategies
Total possible number of symptoms	6	6	13	30

		Mean number of symptoms	Mean number of symptoms	Mean number of symptoms	Mean number of symptoms
Received service		4.1	4.1	9.3	8.4
Did not receive service due to:	Personal refusal	3.2^*	3.2^*	5.9^**	6.1^**
	Lacked access	3.9	4.5	9.6	8.6
	No provider referral	3.8	3.9	8.5^*	7.7

p-value (^* p<0.05; ^** p<0.01; ^*** p<0.001) is comparing those who received services in each of the categories individually to those who did not receive services for the three different reasons.

For all types of counseling, except counseling for a child, women who reported not receiving services due to lack of referral or access were no different from women who received and benefitted from such services. Only women who refused services had significantly lower symptomatology than women who received services, suggesting they personally felt less of a press to seek out these services. These data suggest that nonreferral and lack of access played a significant role in many women not receiving these services despite having symptoms that might have benefited from them. The same pattern was also detected for nutrition, supplements, and meditation. In the category of counseling for a child, women who received services were significantly different from all groups who failed to receive such services, suggesting that in this group, women with equivalent needs for the service indeed received it. For massage services, lack of access emerged as a reason why women who would have an equivalent level of potential benefit did not receive the services, followed by lack of referral (though this reason for nonreferral did not reach statistical significance).

Discussion

Data revealed that the majority of women with breast cancer diagnoses had a variety of psychologic and physical symptoms that have been shown in the extant literature as being amenable to successful treatment with complementary and alternative treatments. For example, fatigue, a physical concern voiced by almost all women, has been shown to improve with yoga,²⁴ massage,²³ and counseling strategies.¹⁶ Adjustment symptoms to the cancer diagnosis, such as fear of recurrence or metastasis, two commonly named emotional symptoms, respond well to mindfulness-based stress reduction interventions,^17,18 yoga,²⁴ and counseling.¹⁵ Despite their presentation with symptoms amenable to CAM, the minority of women received services that might have been of benefit to them, such as counseling (received by only 30%), nutritional support (46%), meditation (30%), or physical strategies (e.g., yoga, massage; 47%). The primary reason given for nonreceipt of these CAM services was nonreferral by their primary health care providers, followed by personal refusal and lack of access. Women who refused CAM services generally had lower symptomatology and hence actual lower potential need for such services. All, however, had at least one symptom that may be addressed by CAM services. Thus, at least a portion of women who did not receive CAM services failed to do so because they personally did not believe they would benefit. Although these women indeed had lower levels of need as expressed by the average number of symptoms they reported, all had at least one symptom that could have been addressed by CAM services. More concerning, women who were not receiving CAM due to not being referred for them, on the whole, had the same level of potentially benefiting symptomatology as women who did receive such services. The same is true for women who received referrals, but failed to receive services due to lack of access. These findings suggest that a significant portion of women diagnosed with breast cancer were not receiving CAM services that could reduce symptoms and enhance quality of life.

It will be crucial to make care providers of women with breast cancer more aware of the potential benefits of CAM services such as counseling, nutrition, massage, yoga, and meditation to help facilitate active access to such services. Improving referral patterns will take care of a large portion of women who otherwise would not receive beneficial services. CAM services must be built into care plans for women with breast cancer on a routine basis. These services must become an accepted and valued part of the treatment of breast cancer survivors that is offered concurrently with conventional treatment and the value of which must be clearly communicated to patients. A smaller portion of women failed to receive CAM services due to lack of access. Given that this sample was collected in Alaska, this is not a surprising finding. Service access can be severely restricted in certain areas of the state. Building adequate access to CAM is an important next step in developing CAM alternatives for women and in assuring integrated care for breast cancer survivors. Finally, there was a group of women who refused CAM services. Although on the whole this group did indeed have fewer symptoms that may have benefited from CAM, their symptom distress was merely lower; it was not absent. Thus, at least a portion of these women may have failed to recognize the potential benefit of CAM to their adjustment to living with breast cancer or dealing with side-effects of treatment and diagnosis. As caregivers become more educated about the potential benefits of CAM services, they may be able to pass on this knowledge to their patients, increasing their level of acceptance of and request for such services. Thus, increasing CAM awareness and acceptance requires a two-pronged approach geared toward providers and patients simultaneously.

Findings from this study are limited in that data collection occurred in a single state. Also, data were based on a convenience sample of women who volunteered to respond to the survey. The sample was less than representative of the Alaska population overall, being more highly educated and more affluent than the average Alaskan. Future data collection will need to tease out whether findings hold across other regions of the country and less affluent and educated women. Particularly, the conclusions about access may differ a great deal for different regions and for women with fewer financial resources than the ones represented in this sample. The biases in this sample, however, are such that if anything, access to and acceptance of CAM is overrepresented. Thus, the implications from this study may have found even stronger support among more population-representative samples.

Conclusions

The current data suggest that while access to services played a smaller-than-expected role in nonreceipt of CAM services, the largest reason for CAM nonreceipt was failure to recognize their potential benefit, mainly on the part of providers, but also on the part of at least some patients. Raising awareness about the potential value of CAM among care providers for women with breast cancer is crucial as it will likely lead to more CAM acceptance and utilization. Once care providers accept and refer for CAM, their patients' quality of life may be considerably enhanced, as the extant literature has shown clear value of CAM for women being treated for and surviving breast cancer.

Footnotes

Acknowledgments

This research was funded by State of Alaska Comprehensive Cancer Control Partnership, Breast Cancer Inc., and Providence Alaska Medical Center.

Disclosure Statement

No competing financial interests exist.

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