Medical cannabis-related stigma: cancer survivors' perspectives.

BACKGROUND: Although the vast majority of medical cannabis laws in the USA includes cancer as a qualifying condition and medical cannabis-related stigma influences decision-making regarding the botanical, few studies have explored the phenomenon in oncology. Early findings indicated oncologic cannabis-related stigma to be quite widespread. METHODS: Semi-structured interviews with 24 adults with cancer histories using medical cannabis were analyzed using the Health Stigma and Discrimination Framework. RESULTS: Sixteen out of 24 participants discussed medical cannabis-related stigma in some depth. The phenomena emerged as more pervasive in medical than personal/professional domains and was internalized as well as experienced directly. It led some participants, but not others, to practice partial or complete secrecy. DISCUSSION: Taken together, our findings suggest that, while medical cannabis-related stigma remains widespread and led some study participants to alter behavior, an early shift in ethos towards greater medical cannabis acceptance could be underway. If so, this transition may be occurring more rapidly in non-medical than in clinical settings. CONCLUSION: Cancer survivors may experience heightened medical cannabis-related stigma in the clinic as compared to their personal/professional lives. Healthcare providers who depend on patient transparency when gathering medical histories and devising care plans may wish to neutralize perceptions of medical cannabis-related stigma.

Informing models of cancer genetics care in the era of multigene panel testing with patient-led recommendations.

The study describes patient-reported experiences and recommendations to improve the genetic counseling and multigene panel testing (MGPT) process. A descriptive mixed-method study with concurrently collected and integrated qualitative and quantitative data was conducted. Eligible participants were English-speaking adults with a breast or gynecologic cancer diagnosis who had received genetic counseling and testing with a MGPT from one Comprehensive Cancer Center. Satisfaction with the genetic counseling, genetic knowledge using a recently validated scale (KnowGene), the multidimensional impact of cancer risk assessment (MICRA), family communication, and the association with demographic factors were evaluated. To supplement the large quantitative data set, qualitative focus group responses and open-ended text items were collected. Univariate and multivariable associations between each outcome of interest and personal characteristics were assessed. Qualitative data were content-analyzed. 603 participants completed the survey (48% response rate) and 10 individuals participated in the focus groups. Participants were mostly Caucasian, educated with a college degree or more, and female with median age 58 (24-91), and 78% of participants had a breast cancer diagnosis. Of all individuals undergoing genetic testing using a MGPT, 13% had a pathogenic variant identified, and 30% had a variant of uncertain significance (VUS). Overall, participants reported satisfaction with the genetic counseling and testing process (mean 36.9 [SD 4.7]). On average, participants had 7 incorrect answers out of 19 on the genetic knowledge scale (mean 12.3 [SD 3.4]). MICRA scores showed overall low levels of distress and uncertainty, as well as positive experiences, with wide variability (median 17 [0-84]). Age, marital status, education level, type of cancer diagnosis, and genetic testing results were significantly associated with outcomes. Most participants communicated genetic testing results to mainly female first-degree relatives. A wide range of individual preferences affecting overall satisfaction, or suggestions for improvement were shared. As new models of streamlined cancer genetic services are being clinically implemented, approaches should continue to assess and tailor the process based on patients' informational and emotional needs.

Hodgkin Lymphoma Survivor Wellness: Development of a Web-Based Intervention.

BACKGROUND: Informational and supportive care resources are needed for Hodgkin lymphoma (HL) survivors. OBJECTIVES: The aim of this article is to adapt and evaluate a previously developed survivorship care website for HL survivors. METHODS: A mixed-methods, user-centered design, including one-time focus groups, was followed by iterative web design and user testing. Transcripts were content analyzed, and survey responses were summarized. FINDINGS: HL survivors need survivorship care education and support. Tailored web-based resources may be an effective adjunct to clinical care. The Survivor Wellness website is a usable web-based resource for HL survivors that may facilitate survivorship care.

Development and testing of the KnowGene scale to assess general cancer genetic knowledge related to multigene panel testing.

PURPOSE: To develop and evaluate a measure of cancer genetics knowledge relevant to multigene panel testing. METHODS: The instrument was developed using systematic input from a national panel of genetics experts, acceptability evaluation by patient advocates, and cognitive testing. Twenty-four candidate items were completed by 591 breast or gynecological patients who had undergone genetic counseling and multigene panel testing in the past 18 months. A unidimensional item response theory model was fit with a mix of 2-parameter logistic nested response (2 plnrm) and 2-parameter logistic (2 pl) items. RESULTS: Key domains addressing cancer genetics knowledge were found to be overlapping. Of the 24 candidate items, 8 items were removed due to poor discrimination or local dependence. The remaining 16 items had good fit (RMSEA = 0.045, CFI = 0.946) and discrimination parameters ranging from 0.49 to 1.60. The items specified as 2 plnrm distinguish between those answering incorrect versus don't know, with discrimination ranging from 0.51 to 1.02. Information curves were highest among those with lower knowledge. CONCLUSION: KnowGene is a rigorously developed and effective measure of knowledge after cancer genetic counseling and multigene panel testing. PRACTICE IMPLICATIONS: Measuring knowledge in a systematic way will inform practice and research initiatives in cancer genetics.