Bio 22

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Complementary Therapies in Medicine

journal homepage: www.elsevier.com/locate/ctim

Exploring cancer survivors’ attitudes, perceptions, and concerns about using medical cannabis for symptom and side effect management: A qualitative focus group study

David Victorsona,b,⁎, Megan McMahonc,b, Bruriah Horowitza,b, Sydney Glicksona,b, Brandy Parkera,b, Leslie Mendoza-Templec,b

a Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, Chicago, IL, United States b Cancer Wellness Center, Northbrook, IL, United States c Department of Family Medicine, University of Chicago Pritzker School of Medicine, Chicago, IL, United States

A R T I C L E I N F O

Keywords: Medical cannabis Medical oncology Cancer survivors Qualitative research

A B S T R A C T

The purpose of this study is to gain a greater understanding of cancer survivors’ attitudes, perspectives, and concerns about medical cannabinoids (MCs) for cancer symptom and side effect management. Using qualitative methods, we conducted four focus groups (n= 19) with cancer survivors recruited from a community-based cancer wellness center. Groups were audio-recorded and facilitated by experienced co-moderators who directed discussion using a semi-structured interview guide. Transcripts were coded using principles from Grounded Theory. Analyses revealed the following ten themes and percentages of codes applied: 1) Attitudes & Beliefs (25.3%), 2) Access (17.1%), 3) Information (15.5%), 4) Concern (14%), 5) How MCs Helped (12.6%), 6) Comfort (4.3%), 7) Confusion (3.6%), 8) Trust/Distrust (3.1%), 9) Behaviors (2.3%), and 10) Support (2.2%). Participants reported that MCs offer potential benefits for symptom management and side effect relief, especially in reducing and managing pain. Despite the growing number of states that are legalizing MCs, significant bar- riers exist that make knowledge and adequate access a challenge for many.

1. Introduction

The use of marijuana for medicinal purposes has been documented for centuries.1 Over 17,000 articles have been published regarding the benefits of medical cannabinoids (MCs), including a 2017 National Academies of Science Report on the Health Benefits of Cannabis and Cannabinoids.2 MCs have demonstrated varying levels of benefit in areas such as symptom relief 2,3 in areas such as nausea and vo- miting,2,4,5 cachexia, muscle spasms, and pain.2,6,7 MCs have been shown to provide symptom relief in diseases including cancer, acquired immunodeficiency syndrome, multiple sclerosis as well as a host of other chronic medical conditions.2,4,8,9 In the United States (US), efforts are underway to control and regulate MCs, which are currently legal in 29 states and the District of Colombia, with several other states con- sidering legislation.10 State laws focus on availability and enforcement rather than quality and labeling, a necessity for patient safety.11

While public support for MCs use has grown incrementally over the past two decades due to its potential to help medical patients achieve symptom relief, widespread acceptance by the medical community has

been somewhat slower to follow. This is largely as a result of con- troversies surrounding the recreational use of marijuana,12 as well as its classification as a schedule I controlled drug substance by the US Drug Enforcement Administration.13 In a recent national survey of family physicians, internists, obstetrician-gynecologists, psychiatrists and ad- diction specialists about their attitudes prescribing marijuana for medicinal purposes (n= 960),14 36% reported it should be legal. While MCs have been used to assuage disease and treatment-related burden among cancer patient populations, few studies exist regarding oncolo- gist perceptions specifically. One from the early 1990’s specific to on- cologists’ attitudes of medical marijuana prescription (n=1035),15

found that over 44% of respondents had recommended illegal use of MCs for emesis control; that 48% would prescribe medical marijuana to their patients if it were legal; and 54% thought that it should be available by prescription. A more recent study from 201816 found 80% of oncology providers reported engaging in discussions about MCs with their patients; 67% viewed it as a helpful adjunct to standard pain management strategies; 65% thought MCs are equally or more effective than standard treatment for anorexia and cachexia; and 46%

https://doi.org/10.1016/j.ctim.2019.102204 Received 29 June 2019; Received in revised form 24 August 2019; Accepted 29 September 2019

⁎ Corresponding author at: Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, Chicago, IL, United States. E-mail address: d-victorson@northwestern.edu (D. Victorson).

Complementary Therapies in Medicine 47 (2019) 102204

Available online 10 October 2019 0965-2299/ © 2019 Elsevier Ltd. All rights reserved.

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recommended MCs clinically. Medical patients themselves have been frequently left out of the MC

conversation despite being the most personally affected by them. Over the past decade, patients have become increasingly open to using MCs for reasons including decreasing side effects,17,18 beliefs that MCs are less toxic than prescription medications such as opioids,19 and reducing reliance on opioid medications.20 A study recently published in the Journal of Pain found that when patients with chronic pain were asked, "How effective is medical cannabis in treating your symptoms or con- ditions?" with options of 0="no relief" to 100="complete relief," the sample responded with an average of 74.6% +/- 0.6.21 However, pa- tients report avoiding MCs under the guidance of their physician due to a fear of stigmatization,22 potentially decreasing treatment success or quality of life.

Cancer patients and survivors are a population of particular re- levance for using MCs due to their known benefits in improving quality of life and reducing treatment related side effects. MCs have been found to combat anorexia, chemotherapy induced nausea and vomiting, pain, insomnia, depression, changes in mood, and muscle tension.23,24 Pre- clinical research has demonstrated antitumor effects, but few clinical trials have confirmed this effect.25 Despite the documented benefits of MCs for people diagnosed with cancer,4 including published studies that have surveyed the attitudes of physicians and oncologists about MCs,15,16,26 to date no study has been conducted exclusively with cancer patients to explore their knowledge and attitudes of MC use for the management and control of cancer-related symptoms and treatment side effects.

The primary objective of this study was to gain a greater under- standing of cancer survivor knowledge of MCs, including their potential benefits for cancer symptom management, and to explore cancer sur- vivor attitudes about using MCs for cancer symptom and side effect relief. Using qualitative focus group methodologies, we explored these topics in a community-based mixed sample of survivors with various cancer diagnoses who have completed primary cancer treatment.

2. Methods

2.1. Participants and eligibility

Focus group participants were eligible if they met the following inclusion criteria: (a) diagnosed with cancer; (b) experienced negative or unwanted cancer symptoms or treatment-related side effects (e.g., nausea, vomiting, cachexia, pain) as determined by the site recruiter; (c) > 18 years of age; (d) cognitively intact to be able to actively participate in a focus group, as determined by the site recruiter; (e) able to read, write, speak and understand English. General exclusion criteria included: (a) physical debilitation such that study participation in a focus group would not be feasible or would create undue hardship; (b) history of diagnosed severe mental illness or hospitalization for chronic psychiatric reasons.

2.2. Setting and recruitment

We identified and enrolled eligible participants through a part- nering cancer support center in the Greater Chicagoland area where this study took place. This center provides free support, resources, and educational programming to cancer survivors and their caregivers. Members of the center were emailed and offered the opportunity to participate in focus groups. We sought a heterogeneous sample to in- clude diverse perspectives and experiences, including representation in terms of age, clinical characteristics, time since diagnosis, and experi- ence with MC’s. Focus groups were moderated by experienced facil- itators (DV, MM, BH), all whom have significant experience guiding focus group discussions.

2.3. Procedures

The Internal Review Board at a large, Midwestern University ap- proved this study. Following consent, we conducted four, 90-minute focus groups with individuals who were diagnosed with cancer and who completed their primary cancer treatment. Prior to starting the group, we asked all participants to complete a socio-demographic and clinical information form, which we used to describe our sample at the group aggregate level. To direct focus group discussion, we developed a semi- structured moderator’s guide, which we based on guides used in pre- vious qualitative research studies.27,28 Following a brief orientation to the study and review of ground rules, the following probes were available to moderators to guide discussions if needed: 1) When or for what reason do you think that using medical marijuana could be helpful for you or someone you know who has cancer? Unhelpful?; 2) What concerns (if any) might you have about using medical marijuana and why?; 3) How safe do you think medical marijuana is? Effective?; 4) How concerned are you about medical marijuana being habit forming or abused, if at all?; 5) Would you ever personally consider using medical marijuana? If yes, for what specific reason?; 6) If you’ve never used medical marijuana before, how comfortable would you feel being able to know how to use it appropriately?; 7) How would you prefer to take it and why? Eg, smoking/vaping, edibles; 8) Can anyone describe what the process will entail here for the Illinois Medical Cannabis Pilot Program to be able to use medical marijuana? What do people think about it?; 9) Would you feel comfortable asking or speaking with your oncologist to discuss whether a prescription for medical marijuana is appropriate for you or someone you care for? Why/Why not?; 10) If you were prescribed medical marijuana, would you be comfortable if other people knew about it (e.g., friends, family)? Why/why not?; 11) Where do you look for information about medical marijuana?

We audio-recorded all groups and reviewed the quality of the audio files prior to verbatim transcription (excluding identifying informa- tion). The research coordinator sent either an email or postal mail message to participants who completed the study to thank them for their participation. We also informed participants of their right to re- ceive information on de-identified group-level findings upon study termination.

2.4. Analysis

We used phenomenological qualitative approach 29 consistent with grounded theory principles 30 and naturalistic inquiry.31 Our goal was to describe and better understand directly from the voices of actual people affected by cancer their personally meaningful narratives and attitudes on issues related to medical cannabis. We applied several strategies to confirm the credibility and dependability of findings such as 1) Reviewing transcripts and memo-taking; 2) Checking transcripts for accuracy against the recordings 3) Creating of a guiding code book based on open coding the first transcript; 4) Inter-rater reliability testing to assure consistency of coding across raters (kappa of< /= .70 used as an acceptable level of agreement); 5) Selective coding of re- maining transcripts and creation of new codes as they emerge; 6) Evaluation of saturation; 7) Team-wide engagement in an iterative classification process to identify, organize, and group common codes into higher-order categories and themes for ease in understanding and interpretation.

3. Results

Nineteen (n= 19) individuals participated (Group I= 2; Group II= 6; Group III= 6; Group IV=5) representing different types of cancer, MC use histories, and socio-demographic characteristics (see Table 1).

Participants reported an average age of 57 years (range 36–86) and the majority were female (63.2%), White (84.2%) and married (68.4%).

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The most common cancer diagnoses was breast (26.3%). In total, we applied 100 unique codes 1739 times across four focus groups. Inter- rater agreement Kappa’s ranged between .73–.93 across coders. Data saturation was achieved at the theme level, and predominantly at the code level, e.g., only 8% of all codes were mentioned in just one group (see Table 2).

Focus group participants highlighted a variety of attitudes, beliefs, concerns, and preferences regarding the use of MCs for symptom and side effect management for cancer patients and survivors. Below we describe ten separate themes reflecting the 100 codes that were applied from focus group transcripts. The themes included: 1) Attitudes & be- liefs regarding MC use (25.3%), 2) Access to MCs (17.1%), 3) Information about MCs (15.5%), 4) Concern about MCs (14%), 5) How MCs helped symptoms and side effects (12.6%), 6) Comfort with MCs (4.3%), 7) Confusion about MCs (3.6%), 8) Trust/Distrust of MCs (3.1%), 9) Behaviors regarding MC use (2.3%), and 10) Support from others about MCs (2.2%). Within each theme we provide information on the frequency of upon which specific topic were discussed, along with direct participant quotes that best capture the sentiment and meaning behind these discussions.

3.1. Attitudes & beliefs

This theme focused on comments related to different attitudes and beliefs participants had about MCs, such as support for its effectiveness, dislike of Western medicine, and assurance MCs were not being sought for the “high.” Topics within this theme were the most frequently dis- cussed across all groups and represented 25.3% of all participant comments. Within this theme, the most frequently coded areas of dis- cussion focused on wondering what the big deal was about MCs to make them so controversial (14.9%), that MCs should be treated the same as Western medicine (14.6%), and that MCs are safer than Western med- icine (12.5%). One participant stated,

“When you consider you are taking in this chemotherapy, this poison throughout your body, and all the side effects and everything… I just don’t understand why this isn’t approved [medical marijuana] and how all of these other medications are, ones that I think are a lot more harmful.”

Another participant added,

“If I choose to use [MCs] and somebody looks at me like I’m some sort of a druggie…we’ve all been through a lot of stuff you know and if this is what we need in order to make our life a better quality of life and still be able to function and all that I don’t care what anybody says. You know I’m doing what I need to do and I’m not harming anybody.”

3.2. Access

This theme focused on comments related to challenges to having adequate access to MC's, such as complicated state-by-state require- ments and regulations, a lack of professional standardization, and the need to resort to obtaining it illegally. Comments related to access were the second most frequently discussed and represented 17.1% of all participant comments across the four groups. Within this theme, the most common area of discussion (17.3%) centered on an overall lack of professional support to access MCs. One participant stated,

“I hadn’t heard of medical marijuana then. I didn’t know at all how to get it. I was at a party, and you know when everyone asks you how you’re doing? I’m like ‘I’m in a lot of pain’ and before I left the party I was approached by several people who said they could help me out and honestly that’s how I went about it because I didn’t even know how to take that next step. I don’t know where to get it. I don’t know where to do this.”

Another frequent area of discussion related to feeling at the mercy

Table 1 Demographic and Clinical Characteristics.

Demographic Characteristics (N=19) Median Standard Deviation

Age (Range 36–86) 57 11 N Percent

Gender Female 12 63.16% Male 7 36.84%

Race White 16 84.21% Non-White 3 15.79%

Ethnicity Non-Hispanic/Latino 19 100.00%

Marital Status Single, Never Married 1 5.26% Married 13 68.42% Divorced 5 26.32%

Education Level Some High School 1 5.26% High School Graduate/Ged 3 15.79% Some College 1 5.26% College Degree 2 10.53% Some Graduate School 3 15.79% Graduate School Degree 9 47.37%

Employment Status Self-Employed 3 15.79% Employed Full Time 4 21.05% Employed Part Time 1 5.26% Diabled 1 5.26% Retired 8 42.10% Not Employed 2 10.53%

Annual Income Less than $50,000 2 10.53% $50,000 to $74,999 3 15.79% $75,000 to $99,999 3 15.79% $100,000 to $124,999 4 21.05% $125,000 to $249,999 3 15.79% Not Reported 4 21.05%

Cancer Type Brain 2 10.53% Breast 5 26.32% Colorectal 2 10.53% Leukemia 1 5.26% Lung 1 5.26% Lymphoma 2 10.53% Prostate 1 5.26% More Than One Type 4 21.05% Not Reported 1 5.26%

Treatment Completed No 5 26.32% Yes 14 73.68%

Treatment Type Surgery 15 78.95% Chemotherapy 17 89.47% Radiation 10 52.63%

Co-Morbid Medical Conditions Acid Reflex 8 42.11% Anemia 1 5.26% Anxiety 8 42.11% Arthritis 6 31.58% Back Pain 5 26.32% Depression 7 36.84% Diabetes 2 10.53% Endometriosis 1 5.26% Insomnia 3 15.79% Migrane / Headache 2 10.53% Multiple Sclerosis 1 5.26% Ulcers 1 5.26%

Marijuana Use Lifetime Use 15 78.95% Medical 6 40.00% Recreational 13 86.67%

Current Use 5 26.26% Medical 5 100.00% Recreational 1 20.00%

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Table 2 Focus Group Codebook and Saturation Grid.

Theme Code FG1 (n= 2) FG2 (n=6) FG3 (n=6) FG4 (n= 5) %

Access Obtaining it Illegally 2 1 8 0 17.1% Desire Simplicity in Accessing MCs 5 7 0 0 Different State Regulations Make it Hard 1 5 8 0 At Mercy of Doctors 0 5 1 2 At Mercy of Others 14 2 4 2 Knowledge about card 2 5 10 0 Lacking Accessibility 5 3 6 1 Professional Support Lacking 13 10 10 6 Legal access tricky 1 5 11 4 Looking for simple administration 4 6 0 0 Loopholes to take Cannabis between States 0 0 6 0 Poor governmental regulation 1 2 3 8 Preference for Medicinal Form 3 2 4 3 Want MCs Accessible 8 3 5 2 Why Aren't Physicians Getting Trained? 4 1 0 2

Attitudes & Beliefs MCs are Unethical 0 0 0 2 25.3% MCs are Safe 0 1 4 1 Not addictive 0 2 9 5 Believe in MC's Effectiveness 5 8 12 1 Blind Eye to Danger 4 3 4 0 Safer than Western Meds 3 13 17 9 Western Med Problematic 2 0 3 3 Distinguishing MC and RC 7 2 3 3 Dislike Western Medicine 6 5 0 4 Dislike MC’s (make me feel dizzy) 0 0 0 2 Regulation Importance 11 9 8 8 Prevent Recurrence 6 3 0 0 Overwhelming to Doctors 6 0 6 0 Not Doing it For the High 12 5 1 3 Respect for western medicine 2 0 0 1 Treated like Medication 13 16 0 20 Underlying Excitement of Cannabis 2 2 1 2 What's the Big Deal? 9 12 2 27 Willing to take MCs to live peacefully until passing 0 2 0 3

Behaviors Avoidance of Conventional Meds 5 1 1 0 2.3% Preparation in case cancer returns 2 0 1 0 Back up to Conventional Meds 0 2 3 0 Taking control of own treatment 6 3 3 3

Comfort Managing Dosage 0 7 6 1 4.3% Talking with Physicians 3 12 6 11 Talking with Friends/Family 2 2 2 5

Concern & Side Effects Danger for Children/Youth 0 10 0 0 14.0% Fear of getting a DUI 2 0 5 0 Dispensary Employee Knowledge 0 0 7 0 Insurance 0 1 3 0 Quality Control 2 3 3 1 Addiction 0 3 0 4 Being "Out of It" 0 3 4 0 Legal Consequences 0 5 6 1 Making symptoms worse 3 3 1 6 Overdose 0 0 2 0 Tolerance 0 2 4 0 Weight Gain 0 0 0 2 Workplace Acceptance 0 9 1 0 Cost 3 6 6 0 Fear of Losing access once reliant 2 0 8 0 Prolong Suffering 0 2 0 0 Inconsistency with Dosage 4 2 3 3 Stigma of image of cannabis users 4 2 1 5 Slippery Slope from MC to RC 4 4 0 0 Uncertainty about MC support 0 5 3 1 Stigma of Acknowledging Cannabis Support 6 8 3 3

Confusion Dispensary Access 7 0 13 2 3.6% Administrating 5 2 4 1 Prescription Process 0 0 0 3 Eligibility 3 6 1 1

(continued on next page)

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of others (9.7%) which could be captured by the following statement: "I think the biggest frustration that both of us expressed is…being truly at the mercy of who I’m buying it from that I trust that they are giving the quality they say and what I need and that’s overwhelming." Despite this, it was acknowledged by several that legal access could be tricky (9.3%). One participant stated, “I had trouble with the place I went to be finger-printed so I had to have it done a few times. It cost more money each time you go. I also had to have the state police do a background check and that cost more money so there were a lot of these little extra costs.” As of August 2018, Illinois law was revised to remove fingerprinting and criminal back- ground checks. Medical cannabis card processing took an average of three months, causing significant delay for patients to receive MC therapy prior to this change.

3.3. Information

This theme focused on comments related to challenges getting re- liable and accurate information about MCs, feeling underequipped to self-prescribe safely, and feeling that information is lacking for both physicians and patients. Participants shared doctors fail to fill this in- formation gap leaving them to rely on unregulated, alternative sources such as the internet. This theme represented 15.5% of all comments across groups. The most discussed topic was that accurate information was lacking for patients (31.2%). One participant stated,

“I think that the numbers are showing…that they really aren’t telling enough people about it. Only 3000 people have signed up for it and it’s too bad. And doctors, well my oncologist said to me ‘oh, you’re my first patient that’s asked.’ The nurses have been asking me all the time ‘So did you get it yet? Is it working yet? You’re the only patient we have that is gonna try it’, so I mean not a lot of people are [informed].”

Another participant said,

“What is good? Is it good to have more than 60%? Somewhere I read if you have more than 60% of CBDs then it doesn’t get integrated into your body or absorbed into your body enough unless it has some of the high stuff with it. Do I know? I don’t know. That’s one person making an article [online] who’s not an expert so I don’t know.”

3.4. Concern and side effects

This theme focused on comments related to different concerns participants had about using MCs, from overdosing and becoming ad- dicted, to the quality control of the product and appropriate dosage. Participants expressed concerns that MCs would be taken out of their in- tended context and misused. While some participants expressed concerns about being “out of it” more participants were concerned about the social consequences of use than physical ones. This theme represented 14% of all comments across groups and was comprised of the most codes (k= 22), that reflected a diverse ranges of issues. The most discussed topics were about the social stigma around using cannabis (10.8%) and its cost (8.1%). One participant stated,

“There is always that part of you I think in the back of your mind and I don’t know about anyone else but I have small children and I don’t know, I’m not concerned about them getting their hands on it but more you know, the moms, what would the other moms think? ‘Oh she’s taking medical marijuana.’ I was whispering there sorry. [laughing]. But you know there is a stigma and you know even within this room we don’t fully understand everything about it and there’s a lot that we don’t know about it so the outside world knows probably a lot less, so yeah there’s this little bit of a stigma so I probably wouldn’t advertise it, walk around talking

Table 2 (continued)

Theme Code FG1 (n= 2) FG2 (n=6) FG3 (n=6) FG4 (n= 5) %

Information Contradictory 1 0 1 0 15.5% From Dispensary 0 0 4 0 From Media Sources 8 1 4 9 Overwhelming 4 0 2 3 Discouraging 3 0 0 0 Unreliable 2 2 0 2 Untrustworthy 7 3 3 0 Lacking from Physicians 5 0 2 0 Lacking among Patients 21 8 15 20 Research Lacking 3 6 0 0 Resources provided to patients 1 7 6 4 Various Forms of MCs 6 12 18 12

MC Benefits Anxiety/Mood Swings 3 9 5 5 12.6% Appetite 0 7 1 1 Coping 3 6 7 6 Depression 0 1 1 0 General 6 2 2 4 Kill Cancer 2 0 3 0 Maintain Sexual Relationship 0 0 6 0 Nausea 4 0 7 6 Pain 5 14 14 2 Post Treatment 0 1 2 0 Reflux 0 0 2 0 Relaxing 6 4 1 1 Return to Normal Life 0 2 3 1 Sleeplessness 0 0 2 1 During Chemo 5 0 3 1

Support/Lack of Support Stepping Stone to Healthcare 1 0 0 6 2.2% From Family & Friends 5 0 6 1 You're Not Me 0 5 2 3

Trust/Distrust Distrust Pharma 4 7 0 3 3.1% Distrust Regulation Working 1 3 0 1 Trust doctor's decision 5 2 4 7 Trusting Gut Decision 1 0 0 3

Note: FG= Focus Group; MC=Medical Cannabis; RC=Recreational Cannabis; the values found within each column reflect the number of times a code was applied for that particular code.

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about it.”

Another participant shared, “I see no downside to it. I guess I would have concern if it became so easy

for everyone to get that anyone who wanted to get recreational [marijuana] could get it. I mean I don’t want to drive in a car with a lot of other people around me driving on marijuana and you know the stuff that I take doesn’t get me high, it doesn’t affect me or anything. I’m not doing it for the high. That's the only thing that scares me is that it just opens it up for everybody. That’s what I like about medical marijuana. As long as it’s you know it’s a fine line between making it accessible and easy to get but not so easy that everyone can get it and their uncle and cousin too, you know?

3.5. MCs benefits

This theme focused on comments related to different ways in which participants felt that MCs have helped them, from decreasing nausea and depression, to increasing appetite, relaxation, and sexual function. This theme represented 12.6% of all comments across groups. The most discussed topics were about its beneficial effects on pain (21%), anxiety and mood swings (13.2%), and coping (13.2%). One participant shared,

“My sole purpose was for the pain. Where I went for my treatments was maybe a ten minute car ride from where I lived and after that treatment sitting in the car for that ten minutes to get home was almost unbearable. Every other week or so the doctor would come and we’d have a discus- sion and I would say if I can’t handle the pain and you know that was when sort of, ‘you didn’t hear it from me but yeah’ and so I said ‘alright you know I’ll try it.’ Even then it wasn’t all the time. It wasn’t something I was doing regularly. It was just if I found that the pain just got to the point where I couldn't handle it anymore and it just it relaxed me enough where I could get comfortable and sleep and I certainly didn’t feel high, except for the brownie “laughs.”

Another participant added,

“In my specific case there is a great probability of my cancer returning even though I’m currently in remission which means that I may be facing chemo and other types of treatment so of course I would consider it [marijuana] for those uses. But even for now as we get close to scan time, which is once every three months, there’s an enormous amount of anxiety that starts to build up and if it helps address that to allow us to get through our days because sometimes there’s a whole month of anxiety right before you get your scan because you’re obviously very concerned wondering if it’s come back or not, and sometimes you can have a cold that brings about something and you feel like oh these are similar to the symptoms I had when I was going when I was going through my treatment when I was going through fighting this and so you have these moments where anxiety really peaks. So instead of being prescribed Ativan or Ambien to help you sleep, to relax you, this could be definitely an al- ternative I would consider.”

3.6. Comfort

This theme focused on comments related to how comfortable par- ticipants felt speaking with physicians, family, and friends about MC use, as well as comfort managing dosage. Codes were applied relatively less frequently to this theme, which represented 4.3% of all comments. The primary focus of discussion was on comfort talking with physicians about MC use. One participant said,

“Will I feel like a junkie if I’m asking my doctor to prescribe this drug for me? Doctors don’t view it that way. If you were asking for heroin, yeah, then the doctor is gonna question what is your true purpose for getting this…but I think doctors understand that when you ask for [marijuana], especially a medicinal form, you’re in line with your objective of treat- ment.”

Another participant shared having a different experience with an oncologist:

“My oncologist’s reaction was like ‘you just wanna go back to the good old days of smoking up you know’ and I said, ‘no I want to get rid of the cancer.’ So he treated it lightly, mockingly. Then he said, ‘I can get you some pills that are prescribed that are medically approved that have marijuana in them’, and I said ‘that’s not what I want. I don’t want more pills that are coming from the pharmaceuticals.’ He knew that I con- tinued with that [marijuana] cause every time I went to him each week I kept it on the list that I was taking it. So he was aware but he just ignored it. We had our conversation and that was as much as he was gonna do. I just I realized that his expertise is in western medicine. He does not have expertise in the alternatives. He does not want expertise in the alter- natives and he’s good at what he does but what he does is, of the chemo’s available, which is the best one for this point and this protocol. So ba- sically I see my team as having multiple people from multiple perspectives and to keep both informed of what I am doing even though they may not like it or appreciate it but I want I put it out in front of each of them every time I go. I just added a third doctor to that last week and you know I think everyone feels threatened by it initially but I’m in charge of my team and I want everyone to know what’s going on. Here’s all the pieces, you don’t have to agree with it but just be aware this is what I’m doing.”

3.7. Confusion

This theme focused on comments related to confusion participants expressed with MCs, including types of MCs, how to administer MCs, get a prescription, or become eligible for a card. This theme represented 3.6% of all comments across groups. The most discussed topics related to confusion about accessing dispensaries (45.8%) and how to best administer MCs (25%). One participant stated,

“How do I know how much is gonna be beneficial for me before I start poisoning my liver? What if I have to take a puff every 5 h? What if I have to take 5 puffs a day for 35 days and then I’ve got all this build up in my liver and my doctor is like ‘Hey I gave you the card I’m not watching what you’re doing.’ This isn’t like drinking green tea. It’s not like drinking green tea or coffee you know it’s not the same and so that’s where I’m also worried about the safety. Yeah she’s giving me permission to use it and I get to use it but how do I know?”

Another participant added, “From what I saw on TV, the dispensaries look like they’ve got glass

bottles of bud, not pills or something like that so…” to which another participant stated, “I think that’s the form that the media likes to show on TV. I mean I’m sure they’ve got everything from little gummy bears to ev- erything but that's the stuff that looks like what people are used to seeing so I think they just show that on TV more often, but I think for the most part they have just as many pills as they do things that people can swallow.

3.8. Trust

This theme focused on comments related to how participants trusted and distrusted different aspects of the MC experience, from feeling a difficult choice between trusting their gut or a doctor’s decision to distrusting the intentions of pharmaceutical companies and reliability of internet resources. This theme represented 3.1% of all comments across groups. One participant stated,

“I would prefer that it go through my doctor and I don’t want to do the research on it. I don’t wanna have to sit at the internet and trust someone else you know? I could read ten different articles or reviews and get ten different answers so I’ve never been a fan of looking anything up on the internet when it comes to the cancer, but so yes I would hope that my doctor or oncologist would be able to steer me in the right direction as far as that goes.”

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3.9. Behaviors

This theme focused on comments related to behaviors and actions individuals engage in to use MCs for symptom relief, such as avoiding conventional medication or being prepared should cancer return. Codes were applied relatively less frequently to this theme, which represented only 2.3% of all comments. The majority of conversation about beha- viors centered on taking control of one's own treatment (50%). For example, one participant described reasons for taking MCs after feeling out of control from opioids:

“After my surgery they gave me Norco which for me did absolutely nothing for the pain so they upped it to the Oxycodone stuff. That was horrible, I mean talk about hallucinations and weird dreams and feeling like I was you know an out of body experience or something, and I just I took it once and I said I’m not doing this. I didn’t like the way it made me feel. I didn’t like that I didn’t have any control over anything and I don’t know if it helped the pain or not, I just didn't care. You know? I didn’t like that feeling.”

3.10. Support

This theme focused on comments related to how participants felt supported and unsupported by healthcare providers, family, and friends. This theme represented 2.2% of all comments across groups. One participant stated,

“I have been waiting and my son has like half a dozen friends at the University of Denver and he’s been telling me, ‘Mom I can get you anything. Do you understand? I can get you candy. I can get you mar- ijuana. Whatever you want just tell me. We’ll get it!’ And I’m like, ‘how are you going to get it without somebody getting in trouble for mailing me something they shouldn't mail me?’

4. Discussion

The study utilized qualitative focus group methodologies to gain a greater understanding of cancer survivors’ attitudes, perspectives, and concerns about MC use for cancer symptom and side effect manage- ment. Overall, participants reported favorable attitudes surrounding MC use for these purposes, stating they believe in its effectiveness and as a safer alternative to many conventional medications, such as opioids. This builds upon the literature suggesting that doctors also recognize MCs as a safe and effective alternative for patients, but do not always have the means to prescribe MCs legally. They reported wanting greater regulation and insisted they did not want access to it simply to become “high.” They reported desiring greater simplicity in accessing and administrating MCs, stating there are inconsistent governmental regulations that make it difficult, frustrating, and confusing. They also reported frustration and dissatisfaction with feeling at the mercy of physicians for basic information and access; the same group they re- ported as lacking in MC-specific knowledge and training.

Participants reported dissatisfaction with having to get information about MCs from untrustworthy and unreliable sources, such as the in- ternet, dispensaries and their peers. They expressed a variety of con- cerns, the biggest being the social stigma associated with the image of using cannabis among family, friends and workplace colleagues. Other frequently mentioned concerns included the cost of MCs, fear that it may make symptoms worse, and worrying about legal consequences if it was obtained illegally. Participants reported a variety of ways in which MCs have helped, from decreasing symptoms and side effects of pain, nausea, insomnia, reflux, anxiety, mood swings, and depression, to increasing appetite, libido, feelings of relaxation, and coping in general. Many expressed comfort speaking with the physicians about MCs, but reported confusion about access, eligibility, administration, and the prescription process. Participants reported trusting their

physicians but distrusted pharmaceutical companies and their role in the future production and sales of MCs. Participants who reported using MCs stated that they did so to take control of their own treatment and to avoid using conventional medications. Finally, some participants re- ported feeling supported in their MC use from friends and family, but unsupported by the overall movement against regulating MCs.

Our work is relevant, as no existing studies have ever asked cancer patients directly about their perceptions and attitudes regarding MC use, which is particularly important given current legislative actions to regulate and control it, both at the state and federal level. Our study findings could offer important patient-centered information to guide both legislative actions and clinical supportive cancer care service de- livery. For example, the lack of available professional guidelines and standards surrounding MC use for people with cancer is concerning given that many patients and caregivers will seek and use MCs whether they are legalized or not. Given the Catch-22 participants described, that while they trust their physicians and feel comfortable speaking with them about MCs, yet they feel at the mercy of their physicians for MC information and access and don’t feel their physicians are well- enough trained to provide adequate counseling and education, a sig- nificant teachable moment may be uniquely leveraged. This identified training and education gap has implications for medical education curricula, professional society special interest groups and platforms, and continuing medical education programs. Healthcare professionals need to increase their education and awareness of MCs as a treatment option to better guide their patients. Since MCs have been considered non-conventional within the broader healthcare delivery system, phy- sicians with training in non-conventional medical approaches, such as Integrative Medicine and Integrative Oncology, may have patients purposefully seeking them out because they feel more comfortable asking questions and getting information about MCs from them vs. their primary care physician. Therefore, it may be both an opportunity and a responsibility for fields like these to make sure their physicians and trainees are as informed as possible, and to even possibly lead in this area to address training and information disparities surrounding judi- cious MC use. This said, as medical cannabinoids become increasingly conventional, all physicians will require proper training to become primary resources for patients using MCs to prevent the misinforma- tion, confusion, and mistrust of alternative resource. Doctors increas- ingly have an obligation to include MCs as part of the open discussion of treatment options to help decrease the stigma patients feel.

This study is not without limitations. While qualitative approaches by theory and design are not intended for inferential, generalizable purposes, our results are based on the perspectives of just 19 individuals (84% of whom are White and 100% of whom are non-Hispanic/Latino) from one community-based cancer support center, all of whom opted into participating in these conversations. Participants also did not in- dicate the severity of their symptom burden, which may have a sig- nificant effect in choosing to use MCs. It is likely that those who ex- pressed interest in these conversations were in favor of MC legalization, perceived benefits, and even superiority over conventional Western medicine. Finally, while moderators were experienced and a semi- structured discussion guide was used, in the end, no two focus groups are exactly alike, and each is affected by the number of participants, the level of engagement of each person, and the fact that different parti- cipant responses can stimulate entirely different lines of discussion among attendees. Therefore, we advise readers to use these perspectives as a starting point for future inquiry, and not as the be-all, end-all de- finitive truth of the matter.

MCs have an emerging role in the management and palliation of cancer-related symptoms and side effects. Individuals affected by cancer hold favorable attitudes about MCs as adjuvant treatments, especially for managing pain, anxiety, treatment-related side effects such as nausea and decreased appetite, and promoting relaxation and well-being. Oncology care professionals have a unique opportunity and professional responsibility to support patient and survivor self-care,

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engagement, and overall empowerment by advocating for greater professional training and education in the counseling of cancer patients and caregivers on MC use, indications, and contraindications.

Author contributions

All authors have contributed significantly to the design, analysis and writing of this manuscript. The contents represent original work and have not been published elsewhere. No commercial party having a di- rect financial interest in the results of the research supporting this ar- ticle has or will confer a benefit upon the authors or upon any orga- nization with which the authors are associated. This study was approved by the ethics board at the institution where this research occurred.

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