Addressing Complementary and Alternative Medicine Use Among Individuals With Cancer: An Integrative Review and Clinical Practice Guideline

Abstract

Complementary and alternative medicine (CAM) use is common among individuals with cancer, but many choose not to discuss CAM with health-care providers (HCPs). Moreover, there is variability in the provision of evidence-informed decision making about CAM use. A clinical practice guideline was developed to standardize how oncology HCPs address CAM use as well as to inform how individuals with cancer can be supported in making evidence-informed decisions about CAM. An integrative review of the literature, from inception to December 31, 2018, was conducted in MEDLINE, EMBASE, PsychINFO, CINAHL, and AMED databases. Eligible articles included oncology HCPs’ practice related to discussing, assessing, documenting, providing decision support, or offering information about CAM. Two authors independently searched the literature, and selected articles were summarized. Recommendations for clinical practice were formulated from the appraised evidence and clinical experiences of the research team. An expert panel reviewed the guideline for usability and appropriateness and recommendations were finalized. The majority of the 30 studies eligible for inclusion were either observational or qualitative, with only 3 being reviews and 3 being experimental. From the literature, 7 practice recommendations were formulated for oncology HCPs regarding how to address CAM use by individuals with cancer, including communicating, assessing, educating, decision coaching, documenting, active monitoring, and adverse event reporting. It is imperative for safe and comprehensive care that oncology HCPs address CAM use as part of standard practice. This clinical practice guideline offers directions on how to support evidence-informed decision making about CAM among individuals with cancer.

The use of complementary and alternative medicine (CAM) in adults with cancer is common and has become increasingly prevalent, with recent estimates suggesting up to 87% of individuals with cancer using at least 1 form of CAM therapy following their diagnosis (1). The National Institutes of Health’s National Center for Complementary and Integrative Health defines complementary therapies as being nonmainstream practices used alongside conventional medicine, whereas integrative medicine brings evidence-based conventional and complementary approaches together in a coordinated way, treating the whole person rather than focusing on a single disease or organ system (2). The term alternative therapies refers to when a therapy is used in place of conventional treatment (2): a practice that is not supported by evidence and occurs rarely among individuals with cancer (3,4). CAM encompasses a variety of therapies including biological-based therapies (eg, vitamins, minerals, and herbal therapies); mind-body therapies (eg, yoga and meditation); manipulative and body-based therapies (eg, massage, chiropractic); energy therapies (eg, reiki and therapeutic touch); alternative medical systems (eg, naturopathy and traditional Indigenous medicine); and lifestyle therapies (eg, diet and exercise).

Individuals with cancer have many reasons for using CAM. It may be used as part of their wellness regime, because of social or cultural reasons, and/or for the management of chronic conditions, including cancer (5-8). Specific reasons for using CAM reported by those living with cancer include managing cancer and treatment-related symptoms and side effects (9-11), improving overall quality of life (10,12), and providing a sense of control (13). Other reasons include boosting the immune system (5,14-16), fighting the disease (12,17), preventing a recurrence (12,17), or as a “last resort” (17). There is relatively limited research evidence about the efficacy and safety of CAM therapies compared with conventional cancer treatments, although the evidence base continues to grow as a result of the interest in CAM use.

Although CAM is frequently used by individuals with cancer, it is not commonly discussed with oncology health-care providers (HCPs), with nondisclosure being as high as 77% (18). Primary reasons given by patients for nondisclosure include the perception that the HCP is indifferent or opposed to CAM use (18,19), the belief that CAM use is irrelevant to their conventional cancer treatment (19,20), or simply that the HCP did not ask about CAM use (19,21,22). Other reasons for patient nondisclosure include the patients not being aware that the therapy they are using is considered a CAM therapy, believing that using natural products and prescribed medicine concurrently is harmless, the HCP being unfamiliar with CAM, or insufficient confidence in the HCP’s CAM knowledge (19,22,23). From the perspective of HCPs, most of the research has suggested that lack of knowledge and comfort in discussing CAM are the leading reasons for not initiating clinical conversations about CAM use (24-26). As a result of the lack of communication about CAM, HCPs may miss valuable opportunities to open dialogue with individuals with cancer about the risks and benefits of using CAM.

The need for improved communication and decision support between oncology HCPs and individuals with cancer about the use of CAM has been identified across the literature (6,12,22,27-36). The absence of discussion and consultation about CAM may compromise the patient–physician relationship, resulting in some individuals feeling reluctant to disclose CAM use, and may lead to the use of alternative therapies instead of conventional cancer treatment (3,8,37-40). In contrast, respectful communication can lead to the use of evidence-based CAM therapies that complement conventional cancer treatment (41). Moreover, the importance of assessing and documenting CAM use has been noted, because some natural products and CAM therapies may negatively interact with cancer treatments, resulting in adverse events and potentially worse outcomes (42,43). Proper documentation may identify potential interactions, prevent adverse events from occurring, and encourage coordination of care across the oncology health-care team. Furthermore, documentation of biologic CAM therapies, such as vitamins, minerals, and herbal products, should be included as part of medication reconciliation—a recognized best practice for patient safety (42). Despite this, these therapies are infrequently documented in individuals’ medical records (44,45).

To date, much of the evidence regarding communication and decision support about CAM use has been from observational studies, qualitative interviews, theoretical frameworks, and clinical insights. Few randomized controlled trials have been conducted on interventions promoting communication and decision support regarding CAM use. Nonetheless, recommendations surrounding the communication and discussion of CAM with individuals with cancer have been developed in recent years (20,46,47). Few guidelines exist, however, regarding how to assess and document CAM use and provide evidence-informed decision support to individuals with cancer. Such guidelines are needed to support oncology HCPs in providing comprehensive care that acknowledges the entirety of health practices engaged in by those living with cancer (11,48,49) and ensures their overall safety and well-being (19,50).

The Complementary Medicine Education and Outcomes (CAMEO) program is a network of researchers and HCPs focused on supporting evidence-informed decisions about CAM therapies by individuals with cancer (51). This network has created consumer-friendly CAM education programs and decision-support resources for patients, their family members, and oncology HCPs. Drawing on the CAMEO program’s interactions with more than 1000 individuals affected by cancer over 7 years, a need was identified regarding the creation of a guideline for oncology HCPs to best support their communication with, and care of, individuals with cancer using CAM. The objective of this study was to develop, based on an integrative literature review (52) using systematic methods and the experiences of the CAMEO program, a clinical practice guideline for oncology HCPs regarding communication, assessment, decision support, and documentation of CAM use.

Methods

Search Strategy

Search Terms. Electronic searches were conducted within Ovid MEDLINE (1946 to December 31, 2018), EMBASE (1974 to December 31, 2018), CINAHL (1937 to December 31, 2018), PsychINFO (1806 to December 31, 2018), and AMED (1985 to December 31, 2018). The search strategy included both subject headings and abstract text words to capture all articles regarding CAM discussion, assessment, documentation, decision making, and information provision for individuals with cancer. Supplementary Table 1 (available online) shows the complete search strategy employed. Only articles in English and those conducted in North America, Europe, or Australia and New Zealand were eligible in this review because of the global differences regarding the positioning of CAM within health-care systems.

Selection of Publications. Inclusion and exclusion criteria were defined a priori. Articles were included if the sample consisted of an adult oncology population and focused on the use of CAM. Specifically, articles were included if they referenced communication, assessment, decision support, information provision, or documentation related to CAM with individuals with cancer. Articles were excluded if they only 1) focused on a pediatric population (ie, participants or HCP worked with patients younger than 18 years); 2) described the prevalence and use of CAM; 3) focused on the individuals’ experience of CAM use; 4) were an opinion or case report; 5) described beliefs or attitudes of HCPs; or 6) were conference abstracts. Two reviewers (CZW and ENH) independently reviewed the titles and abstracts of articles identified from the search strategy. Potential eligible studies were retrieved in full, and 2 authors (CZW and ENH) reviewed the text articles for inclusion. Where there were discrepant views regarding the inclusion of an article, a third reviewer (LGB) made the final decision.

Data Abstraction and Analysis

Data were abstracted from all articles that were deemed eligible for inclusion. Data abstraction was performed by 1 author (CZW) using predefined parameters and reviewed by 2 authors (LGB and ENH). The information abstracted included first author, year of publication, article type, topics covered, and main findings and conclusions.

Guideline Development Process

The initial formulation of the guideline was conducted by the CAMEO research team consisting of an associate professor in nursing (LGB), an advanced practice nurse (TLOT), a senior oncology nurse (BR), and a PhD-prepared former CAM practitioner (AP). All articles were read in full and sorted into themes (communication, assessment, decision support, information provision, documentation). Because of the heterogeneity of the identified literature, the Joanna Briggs Institute (JBI) critical appraisal tools were used because of the variety of instruments available across different types of research and articles, including quantitative and qualitative studies, reviews, and text and opinion (53,54). Articles required a minimum score of 70% for each respective quality assessment tool to be included in the guideline development process and to inform clinical recommendations.

Initial recommendations were reviewed by an external multidisciplinary panel of 12 experts from across Canada, including 3 nurse practitioners, 2 nurses, a medical oncologist, a pharmacist, a radiation therapist, a dietitian, a genetic counselor, a social worker, and a patient advocate. They appraised the guidelines using an investigator-developed survey (Supplementary Table 2, available online) and were asked to assess the objectives of the guideline and the clarity of the recommendations, as well as suggest any necessary revisions. The CAMEO research team then revised the guideline, considering the suggestions made by the expert panel.

Results

Search Strategy Results

Figure 1 illustrates the screening and selection of articles included in this review. Of the 9365 unique references identified by the search strategy, 132 were deemed relevant, retrieved in full, and assessed for eligibility. Of the retrieved full-text publications, 98 were excluded according to the reasons that are summarized in Figure 1. This resulted in a total of 34 publications to be appraised for quality. After critical appraisal of the articles, 4 additional articles were excluded because they did not meet the quality threshold of 70%, leaving 30 studies included in this review (Supplementary Table 3, available online). Three of the included articles were reviews [2 narrative (46,55) and 1 systematic (22)], 3 were intervention studies [1 randomized experimental design (56), 1 cluster randomized controlled trial (57), and 1 quasi-experimental (24)], 10 were cross-sectional surveys (23,31,45,58–64), and 7 were qualitative studies (9,25,26,47,65–67). As well, 7 articles that were conceptual or theoretical frameworks (34,68–73) were also included because they provided important insight into the clinical context of addressing CAM use among individuals with cancer.

Figure 1.

PRISMA flow diagram showing the selection of articles included in the integrative review. AMED = Allied and Complementary Medicine Database; CAM = Complementary and Alternative Medicine; CINAHL = Cumulative Index to Nursing and Allied Health Literature.

Critical Appraisal of Studies

The overall quality of the studies included in the review, according to JBI criteria, was high, with an average score of 91.3% (SD = 12.1, range = 71.43-100; Supplementary Table 3, available online). Although the majority of articles used study designs that are considered to be lower levels of evidence (ie, qualitative and cross-sectional), all were of sufficient quality to be included in the guideline development process. Further details regarding the critical appraisal and quality assessment of each article can be found in Supplementary Table 3 (available online).

Supplementary Table 4 (available online) presents the topics covered and findings of the final articles included in the review. The main findings from the highest level of evidence (ie, reviews and experimental studies) emphasized the importance of assessing and communicating about CAM use in a respectful, person-centered manner with individuals with cancer throughout their illness trajectory (22,46,55). Structured education for oncology HCPs was found to address some of the barriers to communication about CAM, including clinicians’ lack of knowledge and confidence discussing CAM (24,56,57). Evidence-based education and decision support about CAM was identified as being equally important for individuals with cancer in guiding them toward safe and evidence-based therapies (46,55). Documenting and monitoring CAM decisions were also highlighted as being essential components of an evidence-based approach to addressing CAM use among individuals with cancer (46).

Review of Clinical Practice Guidelines by External Panel

Supplementary Table 5 (available online) presents the results from the national external review of the clinical practice guideline. Generally, the external panel found the recommendations to be very clear and comprehensive and appropriate for an interdisciplinary oncology health-care team. Common suggestions and modifications included reducing the length and adding a summary of evidence-based CAM information resources. Factors that were perceived by the reviewers to potentially hinder implementation of the clinical practice guideline in practice settings included clinicians’ lack of time, limited organizational support, and the knowledge gap regarding CAM and CAM practices existing among many oncology HCPs. The lack of recommendations specific to pediatric cancer patients was also identified as a limitation.

Guideline Recommendations

Following the summarization of the literature and the external panel review, the clinical practice guideline was summarized into 7 key recommendations (Table 1). These recommendations included 1) communicating about CAM with individuals with cancer; 2) assessing for CAM use and related information needs; 3) providing and obtaining CAM education; 4) offering decision coaching regarding CAM; 5) documenting CAM decisions and use; 6) monitoring and providing follow-up care related to CAM use; and 7) reporting adverse events. We use the term individuals with cancer to describe any person who has been diagnosed with cancer at some point in his or her lifetime.

Table 1.

Recommendations for oncology health-care providers regarding addressing complementary and alternative medicine (CAM) use among individuals with cancer^a

Recommendations	Description	Questions to ask
1. Communicate about CAM with individuals	Communicate respectfully and nonjudgmentally about CAM with individuals with cancer and their family members, acknowledging the individuals’ beliefs, values, and preferences. Avoid using jargon and ensure communication about CAM occurs across the disease trajectory. Normalize interest in CAM and explore potential reasons for use.	“Are you currently taking or considering taking supplements, such as vitamins and minerals (for example vitamin E or D, calcium) or herbal therapies (for example turmeric, ginseng, St. John’s wort)?” “Are you seeing or considering seeing any other types of health practitioners for your cancer and/or the side effects you’re experiencing and/or for your overall health or well-being? For example, a naturopath, acupuncturist, or massage therapist?” “It’s really important for everyone on your health-care team to know what other things you are doing to help with your illness, beyond the cancer treatments you are receiving or have received (eg, chemotherapy, radiation, surgery). This will allow us to provide care in the safest, most personalized way possible.” “It’s common after being diagnosed with cancer or ending cancer treatment or experiencing a cancer recurrence for individuals to consider using therapies, such as supplements, or seeing a health practitioner, such as a massage therapist, to help manage their stress, symptoms, or to give them a sense of control. What are the main reasons you are interested in or using these types of therapies or practitioners?”
2. Assess for CAM use	Assess an individual’s use of CAM, including type of therapy, dose, and frequency of use. Explore what the person hopes to achieve (ie, objectives) by using each CAM therapy and who has been involved in his or her treatment decision. Identify any risk factors and need for education, referrals or CAM decision–support throughout the cancer trajectory.	“Can you tell me about how you are using [name of CAM therapy]? How much are you using? How often do you use it? How much does it cost? How has it been helping you? What side effects, if any, have you experienced?” “Has using [name of CAM therapy] affected your decisions about receiving cancer treatment in any way?” “I am interested in learning about your goals in using [name of CAM therapy]? What is an outcome you are hoping to achieve?” “How did you hear about using [name of CAM therapy]? Are there people suggesting that you use it? Are you feeling any pressure or anxiety about using [name of CAM therapy]?” Do you have any questions or concerns about [name of CAM therapy]?”
3. CAM education	Determine the individuals’ information needs about CAM and assist them and their family to develop knowledge about CAM and cancer. Help individuals with cancer and their family to locate and evaluate credible sources of CAM and cancer information. Make referrals, when needed, to other health-care providers who can answer specific questions or provide more in-depth decision–support. Evaluate own level of knowledge about CAM and seek further education, as required, to support consultations with individuals and their family about CAM use.	“What is your current understanding about [name of CAM therapy], including what are the possible benefits, risks and side effects?” “What questions do you have about [name of CAM therapy]? Would you be interested in learning more about this therapy? Would you find it helpful to speak to another health-care provider about this therapy and your decision whether to use this therapy or not?” “Some individuals find information in this booklet/resource helpful for making decisions regarding the use of [name of CAM therapy]. Would you like to have a copy?”
4. CAM decision coaching	Provide the support the individual with cancer needs to make evidence-informed CAM decisions independently (decision aids, information booklets) or with the help of a health-care provider with CAM decision–support expertise. Ensure the individual understands information provided, including the potential benefits and risks of CAM use.	“How acceptable is [name of CAM therapy] to you, based on your values and preferences that we discussed? Is the use of the CAM therapy and/or practitioners practical in your situation, including cost, time commitment, and access?” “How comfortable are you in using [name of CAM therapy] given the current level of evidence regarding how well the therapy works and how safe it is?” “I am concerned that there is evidence that [name of CAM therapy] may cause you harm or interfere with the cancer treatments you are receiving. Would you like to know more about my concerns?” “What is your understanding of what we have discussed? Do you have any remaining questions or uncertainties? Do you feel you have all of the information, support, resources and advice you need to make this decision(s)?”
5. Document CAM use	Document the assessment of the individual’s use of CAM (dose and frequency), any potential interactions and their potential impact, the discussion of evidence, level of understanding, awareness of the need to monitor and the plan for follow-up. —
6. Monitor and follow up regarding CAM decision	Follow up on the CAM decision in the next consultation and/or assess the individual’s experience of using CAM, reinforcing information and adjusting the plan as needed.	“You were going to try [name of CAM therapy]. What has been your experience in using that therapy? Do you feel it is meeting your goals? Have you been experiencing any side effects?” “How far along are you in making a decision about [name of CAM therapy]?” “Has your decision about using [name of CAM therapy] changed in any way since we last talked? Has the dose, frequency or type of therapy changed in any way? Has your use of [name of CAM therapy] impacted your cancer treatments in any way?”
7. Report adverse events	Working within your scope of practice, bring any reports of adverse events arising from CAM therapies or practitioners to the appropriate regulatory college or association. In addition, suspected adverse events associated with natural products should be reported to national regulatory bodies, such as the Food and Drug Administration Safety Reporting Portal or Health Canada’s MedEffects program.	“I have some concerns about your experience in using [name of CAM therapy], especially the [adverse effect] you have experienced. For the benefit of others, it would be important to report this to [regulatory or reporting body].”

^a“—” signifies no applicable question

Recommendation 1. Communicate About CAM With Individuals With Cancer

Ask About CAM Frequently. It is essential that oncology HCPs open the conversation about CAM use, and build trust and rapport, by asking individuals with cancer frequently about their interest in, and use of, CAM therapies and practitioners (46,55,56,60,62,68,69,71–73). Initiating these discussions can facilitate open dialogue and help individuals be more comfortable and likely to disclose their use of CAM (9,60,65,72). Moreover, asking about CAM at different timepoints is important as often CAM use changes depending on where a person is at in his or her cancer trajectory (23,31,46). Crucial timepoints to discuss CAM include initial consultation following diagnosis; when a person is making treatment decisions; when there is a change in the person’s condition (eg, progression of disease); when he or she is experiencing severe side effects from conventional treatment; and at transition points, such as completion of treatment (23,46).

Avoid Use of Jargon. When discussing the use of CAM, avoid using the terms complementary medicine or alternative therapies or pejorative labels (eg, quackery). Patients may be unfamiliar or uncomfortable with such terms and may not consider the therapies they are using to fall under the general rubric of CAM (45,46). Instead, ask about the specific types of therapies they are using and provide examples, such as inquiring about the use of natural products, seeing a chiropractor, or using acupuncture (46).

Acknowledge Reasons for CAM Use. Individuals with cancer may use CAM for many reasons beyond curative intent. CAM may be used to help manage symptoms and side effects, to improve overall quality of life, or to provide individuals a sense of control over their disease (9,10). Some individuals may also experience pressure from their social network to consider CAM use. It is important when discussing CAM to consider where the person is at in his or her cancer trajectory and stage of cancer and what conventional treatments have been tried (64). For example, individuals with advanced cancer or a recurrence may be motivated to use CAM to expand their treatment options and to address perceived limitations in conventional treatment (74). HCPs can offer support by empathetically listening to, and engaging with, individuals about their care goals and objectives, sharing information about conventional treatment advances, validating their desire to regain control of their health, and discussing what they may be already pursuing, such as healthy eating and physical activity (46,67).

Summarize the Conversation and Normalize a Person’s Interest. Reiterating the CAM discussion to the individual is effective in conveying important points of the conversation, particularly around any safety concerns (46). Normalizing a person’s interest in CAM is critical to keeping the dialogue open and to fostering future communication (9,55,64,71). At the end of the conversation, determine if there is a need for further information to be provided to the individual (34), or a referral to another HCP, including a psychosocial oncology clinician, if substantial distress regarding treatment decisions is disclosed (71).

Recommendation 2. Assess for CAM Use

Following disclosure of CAM use or interest in CAM, an oncology HCP should consider completing a formal, comprehensive assessment of an individual’s medical history, health beliefs, and past, current, and intended use of CAM (73). The SCOPED (Situation, Choices, Objectives, People, Evidence, and Decision) framework (75,76) is 1 example of an assessment tool, used by the CAMEO research team (34), that provides an effective and efficient way of determining an individual’s health-care preferences and beliefs related to CAM. Table 2 presents the SCOPED framework and a clinical exemplar of a CAM assessment. This framework can help clarify a person’s objectives for using a specific CAM therapy, his or her current knowledge and information needs, and who else is involved in treatment decisions. The assessment of CAM use should also include the dose or frequency of therapy, cost to the individual, location where the individual receives the therapy, and any other details that may be pertinent to his or her cancer care (46,70). This information can assist oncology HCPs in tailoring the information and decision support provided to individuals with cancer who are interested in or are using CAM (75).

Table 2.

SCOPED framework for assessment of complementary and alternative medicine (CAM) use for individuals with cancer^a

SCOPED checklist	Description	Case example
Situation	Past medical history, other medical conditions, and any past, present or future CAM use Type of conventional cancer treatment person is receiving, or has received Beliefs and preferences about health care	47-year-old woman diagnosed with stage III breast cancer on cycle 4 of 6 of chemotherapy treatment, using vitamin supplements. Feeling very fatigued and interested in other natural products.
Choices	Person’s understanding of conventional cancer treatment plan, specifically the process, monitoring, and expected outcome. Other therapies under consideration, including CAM	Has used all recommended conventional cancer treatments for curative intent and has asked appropriate questions. Is considering using ginseng to address chemotherapy-related fatigue.
Objectives	Objectives for considering or using CAM product or therapy	Use ginseng to improve energy levels and reduce feelings of fatigue that are negatively impacting her family and work roles.
People	Who is involved in conversations about health care and CAM decisions?	Partner wants her to try ginseng. She does not want her oncologist to know about her decision.
Evaluate	Knowledge about CAM product or therapy, including risks and benefits Questions about CAM product or therapy	Heard from a friend that ginseng “gives you more energy.” Worried that it may negatively interact with her chemotherapy.
Decision	Where is the person at in terms of making a decision? Confidence in making decision about the CAM product or therapy	Unsure if ginseng is okay to take while currently receiving chemotherapy. Believes it will not hurt but wanted to check with health-care team.

^a SCOPED = Situations, Choices, Objectives, People, Evaluate, Decision.

During the assessment process, oncology HCPs should determine whether any additional follow-up or referrals are required regarding an individual’s use of CAM (34,55,70,71). This may include addressing any potential risks or the individual’s unmet information needs. A referral for CAM education may be beneficial for individuals who require more resources to make evidence-informed decisions (60), are unaware of potential risks of a CAM therapy (eg, interaction with medication) (68), are feeling pressured to make a CAM decision by their support network, or are considering delaying or refusing conventional cancer treatments (71).

Recommendation 3. CAM Education for Individuals With Cancer and Clinicians

Address Lack of Knowledge. Many people affected by cancer may lack basic knowledge about their conventional cancer care. Prior to addressing individuals’ information needs related to CAM, it is important to clarify any points of uncertainty regarding their conventional cancer treatment using clear, plain language and directing them to education resources (46,61). This may help improve their understanding, promote open conversations about treatments, and potentially inform their beliefs and decisions related to CAM (61,63).

With regards to knowledge about CAM therapies, there can be many misunderstandings about their efficacy and safety, particularly in the context of cancer. Assisting individuals with cancer and their family in obtaining credible information about CAM is an integral part of supporting informed treatment decision making that maximizes benefits and reduces risks (56,61,63). Numerous evidence-based resources exist regarding how to make an informed decision about CAM when living with cancer, as well as providing detailed information about popular CAM therapies (Table 3). For example, evidence-based therapy monographs (61) can be easily disseminated within busy clinical settings to address commonly asked questions among specific patient populations.

Table 3.

Evidence-based complementary and alternative medicine (CAM) resources for individuals with cancer and oncology health-care providers

Resource	Audience	Information provided	Website link
Memorial-Sloan Kettering Cancer Centre	Health-care providers and individuals with cancer	Cancer-specific ask-to-search database of herbs, botanicals, other natural health products, and mind-body therapies. Present infographics for specific CAM therapies. Also can be downloaded as an app on your phone.	https://www.mskcc.org/cancer-care/diagnosis-treatment/symptom-management/integrative-medicine/herbs
MD Anderson Cancer Center Complementary and Integrative Medicine Education Resources	Health-care providers and individuals with cancer	Cancer-specific evidence-based reviews of CAM therapies, links to internet resources, videos and listings of educational programs and events	http://www.mdanderson.org/departments/cimer/
Natural medicines	Health professionals, researchers, and individuals with cancer	Searchable database of natural medicines, diseases, or conditions. Contains product information, effectiveness ratings, and potential interactions. Requires subscription but may be accessed through agency subscription for health-care providers	www.naturaldatabase.com
National Center for Complementary and Integrative Health	Health-care providers, individuals with cancer, and researchers	Provides information for individuals with cancer and health-care providers on herbs and common CAM therapies, as well as education modules for the health-care providers on CAM. Have an app called HerbList, which provides information graphic on common natural health products.	https://www.nccih.nih.gov/
National Cancer Institute Office of Cancer Complementary and Alternative	Health-care providers and individuals with cancer	Information for health-care providers and individuals with cancer on how to discuss about CAM. Site has CAM resources such as tips for talking about CAM, sheets to record CAM use, and CAM worksheets for patients to summarize their intentions for using the therapy. Health-care providers have summaries of evidence and education materials. Links to other resources to help aid in decision making.	https://cam.cancer.gov/
National Institutes of Health Office of Dietary Supplements	Health-care providers and individuals with cancer	Database of information about dietary supplements including herbs, vitamins and minerals, and botanical supplements.	https://ods.od.nih.gov/
CAM-Cancer	Health-care providers and individuals with cancer	Monographs (summarized research) of commonly used CAM therapies	http://cam-cancer.org

Providing Information and Support. Evidence about CAM therapies should be presented in an unbiased way, acknowledging what is known and not yet known about a therapy (47,67,73), including possible risks. Assessing a person’s level of understanding of the information presented and whether he or she has the support and resources needed to make a decision ensures an individual’s engagement in the decision-making process (46,66,73). It is equally important to discuss the difficulties or uncertainties that can surround a CAM decision. This may include conflict with family and friends regarding an individual’s choices about CAM, such as the costs and time investment associated with a therapy and the level of supporting evidence.

Some individuals may require additional support in understanding the information provided about CAM, determining the quality of that evidence and its applicability to their situation (ie, type of cancer, cancer treatments), and navigating challenging decisions (34,47,72). A referral to an allied HCP, such as a pharmacist or psychosocial oncology clinician, may provide more nuanced information and support, tailored to an individual’s circumstances (34,58,71). An information specialist may also play a central role in identifying, synthesizing, and critiquing research studies on specific CAM therapies, especially when other synthesis information products are not available (ie, monographs).

CAM Education for Clinicians. A major barrier commonly cited by oncology HCPs when discussing CAM with individuals with cancer is not having sufficient education, knowledge, or familiarity with specific CAM therapies or CAM in general (24–26,56). Oncology HCPs do not need to be experts in this field to have meaningful discussions and help individuals with cancer make CAM decisions (64). Brief education sessions have shown to improve HCPs’ knowledge and confidence in discussing CAM-related topics (24,56,57,59), and HCPs have an obligation to obtain education to facilitate these conversations (58).

Recommendation 4. CAM Decision Coaching

Although infrequent, decision coaching [a nondirective approach to supporting and preparing patients to engage in challenging decisions (77)] should occur when an individual with cancer requires intensive support during the CAM decision-making process (34,66,71). This may be reserved for individuals who are experiencing distress about their decision or are considering a choice that may adversely affect their prognosis, health care, and/or overall well-being, such as forgoing conventional treatment (34,66,71). In some settings, decision coaching may require a referral to another member of the interdisciplinary team (71). Such coaching will require a full assessment of an individual’s information and decision support needs, an evaluation of the existing evidence, and consideration of the potential adverse effects (34,64,66,68,71,73).

Evidence-based decision-making tools, such as the SCOPED framework, may be an efficient way to understand an individual’s goals related to CAM use. Such tools can also help uncover important background information such as a person’s current health situation, social support network, and his or her understanding regarding the efficacy, safety, and cost of CAM therapies under consideration (61,64,69,73). This information can then be used to determine the potential benefits and risks of a specific CAM therapy, including what is not yet known about the therapy and how well it meets the desired goal of the individual (46,47,64). From a HCP perspective, it is important that any cautionary statements about CAM be presented in an unbiased manner that balances the potential benefits with the possible risks and reinforces evidence-based treatment options that may address the individual’s reasons for pursuing CAM (34,46,64). Encouraging lifestyle changes, like following a healthy diet or exercising regularly, may offer a sense of control and hold potential health benefits for individuals with cancer (23,55). Moreover, CAM therapies that are both safe and efficacious (ie, mindfulness, yoga, massage) should be encouraged (55,78).

In reviewing the potential benefits and risks of a CAM therapy, it is important that the decision coach touch on those beyond the physical risks (eg, financial, social conflict). If an individual with cancer chooses to use a CAM therapy, establishing a monitoring plan with her or him that records the dose, frequency, and potential adverse effects, as well as whether the individual’s desired outcome is being met, may inform future discussions around CAM use (46,47,64).

Recommendation 5. Document CAM Use

The CAM therapies discussed and/or currently used should be documented within the individual’s medical chart for all HCPs to access (9,45,46,72). This can include the therapy choices being considered, the individual’s goal of CAM use, the people involved in the CAM decision including support persons and CAM practitioners, the evidence and recommendations shared and discussed by the HCP, and the overall evaluation of the quality of the consultation. If possible, natural products should be documented in an individual’s medication list as part of medication reconciliation and to screen for potential interactions (64). If applicable, contact information for the CAM practitioner should be made available in the individual’s chart to facilitate open communication between both conventional and CAM HCPs. A plan to follow-up with the individual about her or his decision and use of CAM, especially if the person is considering delaying conventional cancer treatment or using an alternative therapy in place of standard cancer care, should be made and documented (46,70,73).

Recommendation 6. Monitor and Follow-up Regarding CAM Decision

During subsequent appointments, individuals’ prior decisions regarding CAM, as well as their experience of using specific therapies, should be reviewed (70). Assessment and documentation of how well a CAM therapy is meeting their desired goal(s), what dose and frequency they are using, the impact on their everyday life, and what, if any, adverse effects they have experienced should occur as part of follow-up care. When revisiting the topic of CAM, individuals should be reminded of any potential safety concerns previously discussed, if continuing therapy use is in their best interest, and whether there are any changes planned or required to their decision related to CAM (47,70). As mentioned, CAM use should also be reevaluated at pivotal timepoints during the cancer trajectory (23,46,73) when individuals with cancer may revisit their decision to use CAM.

Recommendation 7. Report Adverse Events

Beyond assessing, documenting, and discussing potential adverse effects ascribed to a CAM therapy with an individual with cancer, it is also important that suspected adverse events be communicated among members of the health-care team. Consultations may be required with specialized HCPs, such as pharmacists, dietitians, and nurse practitioners, to delve further into the cause of the adverse event (ie, drug-natural product interaction, weight loss, physical injury). Serious or unexpected effects attributed to natural products should be reported to appropriate drug reaction reporting systems, such as the Food and Drug Administration’s Safety Reporting Portal (79), Health Canada’s MedEffect (80), or other national bodies (34). Adverse events may also be communicated directly to the CAM practitioner, if applicable (63), and for instances of alleged unprofessional conduct, a report to the CAM practitioner’s regulatory or professional body may be required.

Discussion

Importance of Addressing CAM Use

CAM use among individuals with cancer is becoming increasingly common. Whereas some CAM therapies may be beneficial, others may cause substantial physical, emotional, relational, or financial harm. This review and the subsequent recommendations provide guidance to oncology HCPs regarding the importance of assessing and documenting CAM use, as well as how to best support individuals in making safe and evidence-informed decisions about CAM. Although having in-depth knowledge about specific CAM therapies may be helpful in decision coaching, it is not a requisite for oncology HCPs to address CAM use among the individuals with cancer to whom they are providing care.

To our knowledge, this is the first clinical practice guideline that includes CAM recommendations that are not solely focused on communicating with individuals about their CAM use (46). Although asking about and discussing CAM use is critical, this is not sufficient to facilitate evidence-informed decision making and ensure patient safety. HCPs need to formally assess individuals’ CAM use, including the dose and frequency; document the use of specific therapies and the associated outcomes and adverse effects; provide ongoing monitoring and follow-up care; and offer decision coaching, if required.

The recommendations in this clinical practice guideline are not meant to be applied verbatim and in a linear fashion; instead, HCPs may have to adapt their care as individuals move back and forth in the decision-making process and through the cancer trajectory. In addition, depending on the population and the ethnocultural background of the individual with cancer, HCPs need to be aware of the beliefs, values, and practices that may influence an individual’s openness to discuss CAM and his or her treatment decisions. In some ethnocultural communities, individuals may be reticent or feel unsafe discussing treatment options with HCPs (81). As such, the guideline recommendations may need to be adapted for different individuals and care settings to encourage and normalize the disclosure of CAM. This may involve exploring a person’s medical history, beliefs, and concerns that may underlie his or her interest in CAM, as well as engaging other individuals (ie, support persons, CAM practitioners) who may be involved in the treatment decision (7,18,69,71,82,83).

It is important to emphasize that discussing CAM does not equate to the approval of use. Similar to other harm reduction approaches, discussing the potential benefits and risks of CAM use from the perspective of both patients and HCPs ensures that open and evidence-informed conversations about CAM occur (73). Not doing so may result in serious ramifications on health outcomes, including the use of alternative therapies in place of conventional cancer treatment.

The Need for Institutional Policies, Processes, and Infrastructure

Foundational to the successful implementation of the guideline recommendations is institutional policies that support evidence-informed CAM decision making and an HCP workforce with the requisite knowledge, skills, time, and access to credible information resources. The literature overwhelmingly highlights the need for HCPs to educate themselves about CAM therapies (20,24–26,56,84) and to improve their communication and decision support skills to address an individual’s request for information about CAM in a neutral, nonjudgmental, and empathic manner (68,82,85,86). HCPs who avoid conversations surrounding the use of CAM may close off future conversations with individuals with cancer about their treatment decision-making process (67). Thus, implementation of the guideline in a clinical setting should begin with the development of CAM education strategies for HCPs (24,56,57,59). These may be developed at the agency level, or HCPs can be encouraged to access existing continuing education initiatives focused on CAM (59). Additional pressure to incorporate CAM assessment and documentation into standard oncology care may be applied through accreditation bodies, which determine quality care standards for health-care institutions worldwide.

To empower HCPs to take on active roles and responsibilities related to CAM use by individuals, clinical institutions must develop clear policies, processes, and procedures across the multidisciplinary health-care team. To ensure all individuals with cancer have their CAM use and associated decision needs addressed, clarity is required regarding which HCPs are responsible for the assessment, documentation, referral, and provision of decision coaching, monitoring, and follow-up care. In addition, standardizing the location and timing for each activity within the care trajectory will help streamline procedures, prevent duplication of effort, and improve overall efficiency. Evaluation of an institution’s available resources, infrastructure, and current practices at point of care will be an essential step in identifying areas of quality improvement and where additional support and investment are needed. For example, to support HCPs in identifying potential natural product–drug interactions, access to screening databases such as Natural Medicines (87) will be required. The development of specialized clinics, focused on CAM decision support, may also be advantageous for individuals with cancer whose complex needs related to CAM require additional time, resources, and personalized support.

For individuals’ CAM use and decision-making process to be captured in a way that informs clinical care and patient safety across the diverse health-care team, it is integral that institutions leverage existing infrastructure, including the electronic medical record (EMR). For example, adding natural products to the medication section of an EMR will ensure all HCPs can readily identify the type of natural products being used by individuals with cancer, as well as screen for potential interactions or safety concerns that may require further consultation. Other CAM therapies, such as acupuncture, chiropractic manipulation, and specialized diets, could also be added to the EMR in a location easily discernable to all members of the health-care team, which may facilitate future consultations about CAM use. The EMR could also become an access point for information about CAM for both HCPs and individuals with cancer, such as providing a link to evidence-based monographs or websites (45). As such, working with EMR software companies to expand their functionality and programs to be inclusive of CAM will be an important avenue to pursue in the future.

To improve the efficiency of the CAM assessment and documentation process, institutions can take advantage of existing self-assessment tools and infrastructure, such as having individuals with cancer report their use of CAM on tablets, online forms, or patient kiosks, which can input directly into the EMR. Such tools could also be expanded to support individuals with cancer in monitoring their CAM use, outcomes, and possible adverse events.

Legal Considerations

Oncology HCPs may be hesitant to engage with individuals with cancer about CAM because of their concerns surrounding the potential legal consequences (72,88). HCPs should be clear in their discussions with individuals with cancer, as well as their documentation within the EMR, of the potential benefits, risks, and what is not known about a specific CAM therapy (72). It behooves institutions implementing CAM assessment, documentation, and decision support to consult with their legal counsel, as well as professional regulatory bodies, to ensure HCPs are legally protected and functioning within their scope of practice in the provision of care related to CAM. The development of policies that provide direction to HCPs regarding how to address challenging clinical scenarios, such as refusing conventional care in lieu of alternative treatments, may also increase HCPs’ comfort in discussing CAM with individuals with cancer. Patient disclaimers may also be useful for situations where HCPs are consulted about CAM therapies, especially where there is limited evidence. Despite the challenges associated with discussing CAM, the safety of the individual is paramount, and HCPs have the responsibility to engage and ensure individuals with cancer are aware of the potential benefits, risks, and uncertainties of their treatment decisions (72).

Strengths and Limitations

The clinical practice guideline presented in this article has numerous strengths. The guideline was developed using systematic methods to reduce sources of bias and to identify the most current, high-quality literature. Based on this literature, a team of experienced oncology HCPs and researchers working in the field of CAM decision support developed a pragmatic series of recommendations related to the assessment, documentation, and decision support of individuals with cancer who are considering or using CAM. These recommendations were reviewed by a national panel of interdisciplinary oncology HCPs, who identified areas requiring improvement and offered insight into possible challenges related to implementation of the guidelines within oncology health-care settings.

There are a few limitations to consider. Given the heterogenous and observational nature of the available literature with multiple outcomes, we were not able to systematically review the literature, assess for publication bias, or apply commonly used quality appraisal scales, such as the Cochrane Grading of Recommendations Assessment, Development and Evaluation. The JBI critical appraisal tools, however, have been used widely within the nursing and interprofessional heath research community and allow a diverse body of literature to be appraised and critiqued. Although commentary and editorial articles were excluded from the literature review, the majority of existing literature on how to address CAM use among individuals with cancer has been observational or qualitative in nature. Very little research has been conducted using rigorous methodology, such as randomized controlled trials, to assess the efficacy and effectiveness of having standardized assessment, documentation, consultation, and decision support around CAM as part of cancer care. Despite the lack of high-quality research on the clinical implications of standardizing CAM discussions and decision support, the high prevalence of CAM use among individuals with cancer necessitates the development of recommendations to support oncology HCPs in addressing CAM in a safe, standardized, and systematic manner. Lastly, the clinical practice guideline does not encompass decision support with the pediatric oncology population; however, these recommendations may provide a helpful starting place for discussions about CAM with caregivers and pediatric patients.

Future Recommendations

Clinical practice guidelines are only successful in so far as they improve patient care and health outcomes. The limited data available suggest substantial variation across cancer care settings with regard to how CAM use is addressed and decision support is provided (67). Although clinical practice guidelines bring together the most current and effective recommendations, they are often not implemented into practice nor are they evaluated. Further research is needed that examines the best strategies not only to promote uptake of the clinical practice guideline in oncology health-care settings but also to assess the impact of implementing the guideline on person-centered care and health outcomes. Randomized controlled trials are thus needed that examine the effectiveness of assessment, documentation, and decision support interventions specific to CAM, as well as clinical trials that evaluate the overall efficacy and safety of specific CAM therapies.

Conclusion

To provide safe, person-centered care, it is critical that oncology HCPs discuss, assess, document, and support individuals with cancer in making evidence-informed decisions about CAM. This clinical practice guideline provides pragmatic recommendations regarding how CAM use, decisions about CAM, and related safety concerns can be addressed among individuals with cancer. It encourages oncology HCPs to reflect on their responsibilities and duties related to assessing and documenting all forms of health care being used by individuals with cancer and to standardize how CAM use is discussed within their clinical practice. The guideline provides an important foundation for future implementation studies that will enhance comprehensive cancer care and address the full spectrum of therapies used by individuals with cancer.

Funding

This work was supported by the Canadian Cancer Research Institute’s Knowledge to Action grant (# 702660).

Notes

Role of the funder: The funder had no role in the design of the study, interpretation of the data, and the writing of the manuscript.

Disclosures: The authors declare they have no conflicts of interest.

Author contributions: LGB: Conceptualization; Funding acquisition; Investigation; Methodology; Project administration; Writing—original draft; Writing—review & editing. CZW: Data curation; Methodology; Investigation; Project administration; Writing—original draft; Writing—review & editing. ENH: Investigation; Writing—review & editing. BR: Conceptualization; Funding acquisition; Investigation; Writing—review & editing. JTB: Funding acquisition; Writing—review & editing. AP: Conceptualization; Funding acquisition; Writing—review & editing. TLOT: Conceptualization; Funding acquisition; Writing—review & editing.

Acknowledgements: The authors would like to thank the oncology health-care providers who provided insight and their opinions on the clinical recommendations as well as to Gina Sutherland and Ryna Levy-Milne for initial consultation on the project.

Data Availability

No new data were generated or analyzed in support of this research.