Measures
Substance use frequency: Current users were classified as those who reported using marijuana, CBD, e-cigarettes, or cigarettes within the past 12 months and did not report quitting. Current uses were asked about frequency of use (daily or almost daily, at least once a week, at least once a month, or less than monthly), reasons for using, and side effects experienced. Former users were those who reported previous use of marijuana, CBD, e-cigarettes, or cigarettes but not in the past 12 months. Former users were asked about reasons for quitting. Never users were those who never used marijuana, CBD, e-cigarettes, or cigarettes. Never users were asked about their attitudes towards the substance and interest in using them in the future. The non-user group includes both former users and never users.
Substance use modality: Current substance users were asked what modality they used overall and more often. Marijuana modalities included smoking (in a joint, bong, pipe, blunt), eating (in brownies, cakes, cookies, candy), drinking (in tea, cola, alcohol), vaporizing (in e-cigarette-like vaporizer), dabbing (using butane hash oil, wax, concentrates), or some other modality. CBD modalities included sublingual, capsules or pills, mouth spray, topical, vaping, smoking, suppository, edibles, drinking, or using some other modality. E-cigarettes are a modality but can contain different mists, including nicotine, marijuana, CBD, only flavoring, or other liquid.
Reasons for Use and Side Effects: For each substance, current substance users were asked the reason for use, such as anxiety, fun, appetite stimulant, peer group use. Current users reported if they use marijuana for medical, recreational, or both reasons. For each substance, current users reported any positive or negative effects experienced. For each side effect or symptom experienced, subjects rated the severity from much worse to much better. Subjects reported if they experienced weight or lung function changes with use.
Attitudes towards substances: Never users were given three statements for each substance, including ”I would never use no matter what”, ”I am willing to learn more about the potential benefits and risks”, ”I am curious about using but have not had the opportunity”, and an additional statement specifically for marijuana ”I am open to using it if it were legalized”. They provided their ratings on a sliding scale, ranging from 0-10, which were grouped into five categories ranging from strongly disagree to strongly agree.
CF Disease Characteristics: Subjects reported their pancreatic enzyme use, latest forced expiratory volume in one second (FEV1) percent predicted (greater than 80%, between 70-79%, between 60-69%, below 60%, other, I’m not sure), perceived overall health (poor, fair, good, very good, excellent), and perceived lung health (poor, fair, good, very good, excellent). Subjects were asked if they were currently on a CFTR modulator.
Demographics : Subject demographics included self-identified: age, race/ethnicity (Asian or Pacific Islander, Black or African American, Hispanic or Latino, Native American or Alaskan Native, White or Caucasian, A race or ethnicity not listed here, prefer not to answer), gender (female, male, transgender, non-binary, prefer to self-describe, prefer not to answer) state of residence, highest education level achieved (college degree or higher, no college degree) and household income (unsure/not making an income, less than $50,000, $50,000-$99,999, more than $100,000).
Mental health: Subjects’ mental health was assessed utilizing the patient health questionnaire 4 (PHQ-4), which consists of two anxiety and two depression questions. Total score >3 on either the anxiety or depression questions indicated positivity for either of those disorders and was considered an abnormal mental health screen. Scores are rated as normal (0-2), mild (3-5), moderate (6-8), and severe (9-12)
The survey consisted of four sections of questions on each substance (marijuana, cannabidiol, e-cigarettes, and cigarettes), with a total of 110 questions. The survey also included a section which asked subjects about their experiences with their healthcare team. The survey was comprised of branching logic and skip questions. Subjects who reported not using any substance received a minimum of 30 questions to answer. The format of the survey included multiple choice, Likert scale ratings, slider questions, and open-ended questions. The survey was reviewed, and feedback was given by the CF Foundation.