Community-Driven Identification and Adaptation of a Cancer Caregiving Intervention for LGBTQIA Populations.

Background: Lesbian, gay, bisexual, transgender, and other LGBTQIA cancer patients experience significant disparities in cancer-related outcomes. Their relationships may not be acknowledged in care systems designed to serve primarily heterosexual and cisgender (H/C) patients, and resources for partners and caregivers of H/C patients may not address the needs of LGBTQIA caregivers. Tailored interventions are needed to address disparities in LGBTQIA patients and caregivers. Methods: To address this gap, researchers from Karmanos Cancer Institute in Detroit, MI and Wilmot Cancer Institute in Rochester, NY worked with a cancer action council (CAC) of LGBTQIA stakeholders with lived experience of cancer in a community-academic partnership. This group used the ADAPT-ITT model to guide their process of assessing needs in this community, identifying evidence-based interventions that could be adapted to meet those needs, and beginning the process of adapting an existing intervention to meet the needs of a new population. Results: In the Assessment phase of the model, CAC members shared their own experiences and concerns related to cancer and identified cancer caregiving as a priority area for intervention. In the Decision-Making phase of the model, researchers and CAC members performed a review of the literature on interventions that reported outcomes for cancer caregiver, identifying 13 promising interventions. Each of these interventions was evaluated over a series of meetings using a scoring rubric. Based on this rubric, the FOCUS intervention was established as an appropriate target for adaptation to the LGBTQIA population. In the first stage of the Adaptation phase, CAC members reacted to the intervention content and identified principal components for adaptation. Conclusion: While the FOCUS intervention adaptation is still in process, this manuscript can serve as a guide for others establishing community-academic partnerships to adapt interventions, as well as those developing interventions and resources for LGBTQIA persons coping with cancer.

Assessment of Patient Nondisclosures to Clinicians of Experiencing Imminent Threats.

Importance: Patient disclosure to their clinician about experiencing an imminent threat is a critical step toward receiving support or assistance. Objective: To examine the frequency of patients not disclosing their experience of imminent threats to their clinician and their reasons for doing so. Design, Setting, and Participants: Survey study incorporating results from 2 national, nonprobability samples of 2011 US adults recruited from Amazon's Mechanical Turk (MTurk) from March 16 to 30, 2015, and 2499 recruited from Survey Sampling International (SSI) from November 6 to 17, 2015. Data analysis was conducted from December 20 to 28, 2018. Main Outcomes and Measures: Self-reported nondisclosure of 4 types of imminent threats (depression, suicidality, abuse, and sexual assault) to their clinician and reasons for nondisclosure. Results: There were 2011 participants in the MTurk sample (1210 [60.3%] female; 1696 [60.2%] white; mean [SD] age, 35.7 [12.4] years; age range, 18-79 years) and 2499 participants (1273 [51.0%] female; 1968 [78.8%] white; mean [SD] age, 61.0 [7.6] years; age range, 50-91 years) in the SSI sample. Among those who reported experiencing at least 1 of the 4 imminent threats, 613 of 1292 MTurk participants (47.5%) and 581 of 1453 SSI participants (40.0%) withheld information from their clinician. The most commonly endorsed reasons for withholding this information included being embarrassed (MTurk: 72.7%; SSI: 70.9%), not wanting to be judged or lectured (MTurk: 66.4%; SSI: 53.4%), and not wanting to engage in a difficult follow-up behavior (MTurk: 62.4%; SSI: 51.1%). Respondents who experienced at least 1 of the 4 imminent threats had significantly higher odds of nondisclosure in both samples if they were female (MTurk: odds ratio [OR], 1.66 [95% CI, 1.30-2.11]; and SSI: OR, 1.33 [95% CI, 1.07-1.67]) or younger (MTurk: OR, 0.99 [95% CI, 0.98-1.00]; and SSI: OR, 0.98 [95% CI, 0.97-1.00]). Worse self-rated health was also associated with nondisclosure, but only in the SSI sample (OR, 0.85 [95% CI, 0.74-0.96]). Conclusions and Relevance: This study suggests that many people withhold information from their clinicians about imminent health threats that they face. A better understanding of how to increase patients' comfort with reporting this information is critical to allowing clinicians to help patients mitigate these potentially life-threatening risks.

Prevalence of and Factors Associated With Patient Nondisclosure of Medically Relevant Information to Clinicians.

Importance: Patient failure to disclose medically relevant information to clinicians can undermine patient care or even lead to patient harm. Objective: To examine the frequency of patients failing to disclose to their clinicians information that is relevant to their care and their reasons for doing so. Design, Setting, and Participants: Two national nonprobability samples were recruited to participate in an online survey, one using Amazon's Mechanical Turk (MTurk) from March 16 to 30, 2015 (2096 respondents), followed by one using Survey Sampling International (SSI) from November 6 to 17, 2015 (3011 respondents). Data analysis was conducted from September 28 to October 8, 2018. After dropping respondents meeting the exclusion criteria, the final sample sizes were 2011 (MTurk) and 2499 (SSI). Main Outcomes and Measures: The primary outcome measures were self-reported nondisclosure of 7 types of information to their clinician (eg, did not understand instructions, medication use) and reasons for nondisclosure (eg, embarrassment, not wanting to be judged). Results: There was a total of 4510 overall respondents. Of 2096 respondents, 2013 completed the MTurk survey (96.0% completion rate) and 2011 were included in the analysis. Of 3011 respondents, 2685 completed the SSI survey (89.2% completion rate) and 2499 were included in the analysis. The mean (SD) age of the participants was 36 (12.4) years for MTurk and 61 (7.59) years for SSI. Both samples were predominantly white (MTurk: 1696 [84.3%]; SSI: 1968 [78.8%]). A total of 1630 MTurk participants (81.1%) and 1535 SSI participants (61.4%) avoided disclosing at least 1 type of information. Disagreeing with the clinician's recommendation (MTurk: 918 of 2010 respondents [45.7%]; SSI: 785 of 2497 respondents [31.4%]) and not understanding the clinician's instructions (MTurk: 638 of 2009 respondents [31.8%]; SSI: 607 of 2497 respondents [24.3%]) were the most common occurrences. The most commonly reported reasons for nondisclosure included not wanting to be judged or lectured (MTurk: 81.8% [95% CI, 79.8%-83.9%]; SSI: 64.1% [95% CI, 61.5%-66.7%]), not wanting to hear how harmful the behavior is (MTurk: 75.7% [95% CI, 73.5%-78.0%]; SSI: 61.1% [95% CI, 58.5%-63.8%]), and being embarrassed (MTurk: 60.9% [95% CI, 58.9%-62.9%]; SSI: 49.9% [95% CI, 47.8%-52.1%]). In both samples, participants who were women (MTurk: odds ratio [OR], 1.88 [95% CI, 1.49-2.37]; SSI: OR, 1.38 [95% CI, 1.17-1.64]), younger (MTurk: OR, 0.98 [95% CI, 0.97-0.99]; SSI: OR, 0.98 [95% CI, 0.97-0.99]), and with worse self-rated health (MTurk: OR, 0.87 [95% CI, 0.76-0.99]; SSI: OR, 0.80 [95% CI, 0.72-0.88]) were more likely to report withholding information. Conclusions and Relevance: Many respondents in these surveys intentionally withhold important information from their clinicians and were most likely to do so when they disagreed with or misunderstood their clinician's instructions. A better understanding of how to increase patients' comfort with reporting this information may improve the clinician-patient relationship and patient care.

Understanding the Role of Message Frames on African-American Willingness to Participate in a Hypothetical Diabetes Prevention Study.

The objective of this research was to evaluate the impact of message framing (e.g., highlighting health disparities vs. progress toward reducing disparities) on willingness to enroll in a hypothetical research study. African-American (AA, n = 1513) and White (n = 362) adults completed an online survey about diabetes, health behaviors including physical activity, and attitudes about research. AA participants were randomized to view a general message (same message as provided to all White participants) or 1 of 4 alternate messages that framed the need for people to participate in research in terms of race and/or health disparities. Among AAs, there were no differences in willingness to enroll in the study by message frame. However, individual characteristics including younger age, female sex, attitudes about research, a sense of obligation, and community responsibility were significant predictors of willingness to enroll in the study. AA participants who received the general message were equally willing as White participants to enroll in the study. Highlighting race and health disparities in study recruitment materials may not be needed to increase interest among AAs. Factors beyond race appear to be stronger motivators for participation. Unlike previous research, racial framing did not suppress motivation to enroll in our hypothetical study.

Patient Reflections on Decision Making for Laryngeal Cancer Treatment.

Objective To describe the reflections of patients treated for laryngeal cancer with regard to treatment-related decision making. Study Design Cross-sectional survey-based pilot study. Setting Single-institution tertiary care cancer center. Subjects/Methods Adults with laryngeal carcinoma were eligible to participate (N = 57; 46% treated surgically, 54% nonsurgically). Validated surveys measuring decisional conflict and regret explored patients' reflections on their preferences and priorities regarding treatment-related decision making for laryngeal cancer and how patient-reported functional outcomes, professional referral patterns, and desired provider input influenced these reflections. Results When considering the level of involvement of surgeons, radiation oncologists, and medical oncologists in their care, patients were more likely to believe that the specialist whom they saw first was the most important factor in deciding how to treat their cancer (Fisher's exact, ~χ2 = 16.2, df = 6, P = .02). Patients who were treated for laryngeal cancer who reported worse voice-related quality of life recalled more decisional conflict ( P = .01) and experienced more decisional regret ( P < .001). Of the patients for whom speech was a top priority prior to treatment, better voice-related quality of life overall scores were correlated with less decision regret about treatment decisions ( P < .02). Of the patients for whom eating and drinking were top priorities prior to treatment, better MD Anderson Dysphagia Inventory global scores were correlated with less decision regret about treatment decisions ( P < .002). Conclusion Patient priorities and attitudes, coupled with functional outcomes and professional referral patterns, influence how patients reflect on their choices regarding management of laryngeal cancer. Better understanding of these variables may assist in ensuring that patients' voices are integrated into individualized laryngeal cancer treatment planning.

The impact of numeracy on verbatim knowledge of the longitudinal risk for prostate cancer recurrence following radiation therapy.

OBJECTIVE: . Given the long natural history of prostate cancer, we assessed differing graphical formats for imparting knowledge about the longitudinal risks of prostate cancer recurrence with or without 'hormone' or 'androgen deprivation' therapy. METHODS: . Male volunteers without a history of prostate cancer were randomized to 1 of 8 risk communication instruments that depicted the likelihood of prostate cancer returning or spreading over 1, 2, and 3 years. The tools differed in format (line, pie, bar, or pictograph) and whether the graph also included no numbers, 1 number (indicating the number of affected individuals), or 2 numbers (indicting both the number affected and the number unaffected). The main outcome variables evaluated were graphical preference and knowledge. RESULTS: . A total of 420 men were recruited; respondents were least familiar and experienced with pictographs (P < 0.0001), and only 10% preferred this particular format. Overall accuracy ranged from 79% to 92%, and when assessed across all graphical subtypes, the addition of numerical information did not improve verbatim knowledge (P = 0.1). Self-reported numeracy was a strong predictor of accuracy of responses (odds ratio [OR] = 2.6, P = 0.008), and the impact of high numeracy varied across graphical type, having a greater impact on line (OR = 5.1; 95% confidence interval [CI] = 1.6-16; P = 0.04) and pie charts (OR = 7.1; 95% CI = 2.6-19; P =0.01), without an impact on pictographs (OR = 0.4; 95% CI = 0.1-1.7; P = 0.17) or bar charts (OR = 0.5; 95% CI = 0.1-1.8; P = 0.24). CONCLUSION: . For longitudinal presentation of risk, baseline numeracy was strongly prognostic for outcome. However, the addition of numbers to risk graphs improved only the delivery of verbatim knowledge for subjects with lower numeracy. Although subjects reported the least familiarity with pictographs, they were one of the most effective means of transferring information regardless of numeracy.