Associations of Patient and Parent Characteristics With Parental Decision Regret in the PICU: A Secondary Analysis of the 2015-2017 Navigate Randomized Comparative Trial.

OBJECTIVES: To identify self-reported meaningful decisions made by parents in the PICU and to determine patient and parent characteristics associated with the development of parental decision regret, a measurable, self-reported outcome associated with psychologic morbidity. DESIGN: Secondary analysis of the Navigate randomized comparative trial (NCT02333396). SETTING: Two tertiary, academic PICUs. PATIENTS: Spanish- or English-speaking parents of PICU patients aged less than 18 years who were expected to remain in the PICU for greater than 24 hours from time of enrollment or who had a risk of mortality greater than 4% based on Pediatric Index of Mortality 2 score. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Between April 2015 and March 2017, 233 parents of 209 patients completed a survey 3-5 weeks post-PICU discharge which included the Decision Regret Scale (DRS), a 5-item, 5-point Likert scale tool scored from 0 (no regret) to 100 (maximum regret). Two hundred nine patient/parent dyads were analyzed. The decisions parents reported as most important were categorized as: procedure, respiratory support, medical management, parent-staff interactions and communication, symptom management, fluid/electrolytes/nutrition, and no decision. Fifty-one percent of parents had some decision regret (DRS > 0) with 19% scoring in the moderate-severe range (DRS 26-100). The mean DRS score was 12.7 ( sd 18.1). Multivariable analysis showed that parental Hispanic ethnicity was associated with greater odds ratio (OR 3.12 [95% CI, 1.36-7.13]; p = 0.007) of mild regret. Being parents of a patient with an increased PICU length of stay (LOS) or underlying respiratory disease was associated with greater odds of moderate-severe regret (OR 1.03 [95% CI, 1.009-1.049]; p = 0.004 and OR 2.91 [95% CI, 1.22-6.94]; p = 0.02, respectively). CONCLUSIONS: Decision regret was experienced by half of PICU parents in the 2015-2017 Navigate study. The characteristics associated with decision regret (parental ethnicity, PICU LOS, and respiratory disease) are easily identifiable. Further study is needed to understand what contributes to regret in this population and what interventions could provide support and minimize the development of regret.

Challenges of Families of Patients Hospitalized in the PICU: A Preplanned Secondary Analysis From the Navigate Dataset.

OBJECTIVES: To describe challenges experienced by parents of children hospitalized in the PICU during PICU admission as reported by family navigators. DESIGN: A preplanned secondary analysis of open-response data coded via inductive qualitative approach from the Navigate randomized controlled trial (RCT) dataset (ID NCT02333396). SETTING: Two university-affiliated PICUs in the Midwestern United States as part of an RCT. PATIENTS: Two hundred twenty-four parents of 190 PICU patients. INTERVENTIONS: In 2015-2017, trained family navigators assessed and addressed parent needs, offered weekly family meetings, and provided post-PICU discharge parent check-ins as part of a study investigating the effectiveness of a communication support intervention ("PICU Supports"). MEASUREMENTS AND MAIN RESULTS: We analyzed qualitative data recorded by family navigators weekly across 338 encounters. Navigators described families' "biggest challenge," "communication challenges," and ways the team could better support the family. We used an inductive qualitative coding approach and a modified member-checking exercise. The most common difficulties included home life , hospitalization , and diagnosis distress (45.2%, 29.0%, and 17.2% of families, respectively). Navigators often identified that parents had co-occurring challenges. Communication was identified as a "biggest challenge" for 8% of families. Communication challenges included lack of information, team communication , and communication quality (7.0%, 4.8%, and 4.8% of families, respectively). Suggestions for improving care included better medical communication, listening, rapport, and resources. CONCLUSIONS: This study describes families' experiences and challenges assessed throughout the PICU stay. Family navigators reported families frequently experience stressors both internal and external to the hospital environment, and communication challenges between families and providers may be additional sources of distress. Further research should develop and assess interventions aimed at improving provider-family communication and reducing stressors outside the hospitalization itself, such as home life difficulties.

A New Process Model for Relationship-Centred Shared Decision-Making in Physical Medicine and Rehabilitation Settings.

INTRODUCTION: We present a relationship-centred shared-decision-making (RCSDM) process model to explicate factors that shape decision-making processes during physical medicine and rehabilitation (PMR) encounters among patients, their care partners and practitioners. Existing shared decision-making (SDM) models fall short in addressing the everyday decisions routinely made regarding persons with chronic disabilities who require high levels of support, their care partners and rehabilitation practitioners. In PMR, these everyday decisions are small scale, immediate and in service to a larger therapeutic goal. They can be thought of as micro-decisions and involve multiple practitioners, care partners and patients. How micro-decisions are made in this context is contingent on multiple roles and relationships among these relevant parties. Our model centres on micro-decisions among patients, their care partners and practitioners based on our disorders of consciousness (DoC) research. METHODS: To develop our model, we examined peer-reviewed literature in SDM in PMR, chronic disability and person-centeredness; formed collaborations and co-created our constructs with rehabilitation practitioners and with care partners who have lived experience of caring for persons with DoC; analysed emerging empirical data and vetted early versions with expert scientific and clinical audiences. Our model builds from the core tenets of relational autonomy, and scholarship and activism of disability advocates. FINDINGS: Our model conceptualizes four non-hierarchical levels of analysis to understand the process of micro-decision-making in chronic disability and medical rehabilitation: social forces (historical and sociological); roles and relationships (multiple and intersecting); relational dimensions (interactional and contextual) and micro-decision moments (initiation, response and closure). DISCUSSION: Relationships among patients, their care partners and practitioners are the intersubjective milieu within which decisions are made. Our conceptual model explicates the process of micro-decision-making in PMR. PATIENT OR PUBLIC CONTRIBUTION: Care partners (or caregivers) and rehabilitation practitioners are active members of our team. We work together to develop research projects, collect, analyse and disseminate data. The conceptual model we present in this manuscript was co-created-input from care partners and practitioners on previously collected data became the impetus to develop the RCSDM process model and share co-authorship in this manuscript.

Flattening Hierarchical Structures to Empower Women Trainee Leaders on Social Media Teams.

We share our experience empowering women trainees and leadership through a flattened hierarchical social media team structure with supporting evidence from measurable outcomes.

A coordinated strategy to develop and distribute infographics addressing COVID-19 vaccine hesitancy and misinformation.

BACKGROUND: Visual communication strategies are becoming increasingly prevalent for conveying information to health professionals as well as to the general public. The potential of social media for rapid knowledge dissemination using infographics was recognized early in the coronavirus disease (COVID-19) pandemic by health professionals. OBJECTIVE: The purpose of this study was to describe a coalition of health professionals' approach to developing infographics about COVID-19 vaccines and the reach and engagement of those infographics when shared through social media. METHODS: Infographics were created by a core team within the coalition following a stepwise approach. Each underwent a multistep review process, readability evaluation, and translation into Spanish. Infographics were then shared through multiple social media platforms. They were grouped into 1 of 3 categories for this analysis: COVID-19 vaccine series, myth debunkers, or other. RESULTS: All infographics had greater outreach, impressions, and engagement on Twitter than they did on other platforms. When comparing the 3 groups, no 1 infographic type was consistently performing higher than the others. CONCLUSION: Each infographic reached thousands to tens of thousands of people. We do not know whether those who viewed these infographics changed their perspective on vaccination, so we are unable to draw a conclusion about their impact on vaccine hesitancy based on this study alone.

"It All Depends": Patient and Decision Partner Experiences in Cancer Clinical Trial Decision-Making.

While the supporting role of families and friends has been widely recognized in cancer care, little data exist on how they influence patients' decisions regarding clinical trial participation, accounting for patients' decisional preferences. The goal of our study was to examine the process of clinical trial decision-making from the perspective of adults with cancer and their decision partners. Semi-structured interviews were conducted with 12 patients and 12 decision partners-family and friends engaged in the medical decision-making. Themes included: (1) having the ability and confidence to make decisions; (2) gaining insight about clinical trials; (3) trusting someone in the process; and (4) realizing readiness and context. Our findings will enhance understanding of how patients make clinical trial decisions based on decisional preferences from the perspectives of patients and decision partners. The findings may also help to increase clinician awareness and inclusion of decision partners in conversations regarding clinical trials.

A conceptual model of fertility concerns among adolescents and young adults with cancer.

OBJECTIVE: For adolescents and young adults (AYAs), cancer-related fertility concerns (FC) are salient, disruptive, and complex. Clinical communication about FC and fertility preservation options are suboptimal, increasing patient distress. The purpose of this study is to construct a conceptual model of FC among AYAs with cancer to inform future measurement development. METHODS: Concept elicitation interviews were conducted with a purposive sample of stakeholders: 36 AYAs (10 adolescents, 12 emerging adults, and 14 young adults), 36 AYA oncology health care providers, and 12 content experts in cancer-related infertility. The constant comparative method was used to identify themes and properties that illustrate AYAs' conceptualization and/or experience of FC. RESULTS: Thirteen themes characterized FC among AYAs with cancer, varying by stakeholder group and domain affiliations. Themes were grouped by four domains (e.g., affective, information, coping, and logistical), which organized the conceptual model. Affective experiences were further determined to be an important component within the other three domains. AYAs' fertility and fertility preservation experiences were shaped by communication factors and timing factors including placement along the lifespan/cancer continuum. CONCLUSIONS: AYA FC are characterized by uncertainty and confusion that may contribute to future decisional regret or magnify feelings of loss. Results add to previous research by examining individual, relational, and health care factors that fluctuate to inform fertility preservation perceptions and decision-making across the AYA age spectrum. Findings will be used to develop and test new self-report measures of FC among AYAs with cancer and survivors using classic and modern measurement theory approaches.

Attitudes and practices about fertility preservation discussions among young adults with cancer treated at a comprehensive cancer center: patient and oncologist perspectives.

BACKGROUND: Young adults (YAs, ages 18-39) diagnosed with cancer face multiple challenges that affect their health-related quality of life, including the potential for cancer-related infertility. Providing information about the risk of infertility and options to maintain fertility is critical for YAs who are newly diagnosed. However, barriers to effective communication exist for oncologists and their patients. The purpose of this study was to interview medical oncologists and YAs from the same cancer center to examine attitudes and practices about fertility preservation. METHODS: Semi-structured interviews were conducted with medical oncologists (N=12) and YAs within 2 years post-treatment (N=24), representing the most common cancers affecting YAs. Interviews were audio-recorded, transcribed, and coded using qualitative methodologies with the analysis software NVivo 10. RESULTS: Twelve oncologists (50% female, 67% <50 years) and 24 YAs (67% female, M=29 years) completed interviews. Common themes across oncologist and YA interviews were the roles of cancer type or stage and patient interest or parity in influencing the decision. The most important factor for YAs was to receive accurate, in-depth information. Unique themes for oncologists focused on clinical aspects of their patient's disease. For YAs, they shared about the emotional impact of cancer-related infertility and desire for support from trusted others. CONCLUSIONS: Results provide a better understanding of the attitudes and practices about fertility preservation discussions among YAs. Given the common factors affecting fertility preservation decisions, models of shared decision-making may be ideal for YAs and oncologists. Future interventions should explore tailored applications of this approach for YAs newly diagnosed with cancer.

A Randomized Comparative Trial to Evaluate a PICU Navigator-Based Parent Support Intervention.

OBJECTIVES: Communication breakdowns in PICUs contribute to inadequate parent support and poor post-PICU parent outcomes. No interventions supporting communication have demonstrated improvements in parental satisfaction or psychologic morbidity. We compared parent-reported outcomes from parents receiving a navigator-based parent support intervention (PICU Supports) with those from parents receiving an informational brochure. DESIGN: Patient-level, randomized trial. SETTING: Two university-based, tertiary-care children's hospital PICUs. PARTICIPANTS: Parents of patients requiring more than 24 hours in the PICU. INTERVENTIONS: PICU Supports included adding a trained navigator to the patient's healthcare team. Trained navigators met with parents and team members to assess and address communication, decision-making, emotional, informational, and discharge or end-of-life care needs; offered weekly family meetings; and did a post-PICU discharge parent check-in. The comparator arm received an informational brochure providing information about PICU procedures, terms, and healthcare providers. MEASUREMENTS AND MAIN RESULTS: The primary outcome was percentage of "excellent" responses to the Pediatric Family Satisfaction in the ICU 24 decision-making domain obtained 3-5 weeks following PICU discharge. Secondary outcomes included parental psychologic and physical morbidity and perceptions of team communication. We enrolled 382 families: 190 received PICU Supports, and 192 received the brochure. Fifty-seven percent (216/382) completed the 3-5 weeks post-PICU discharge survey. The mean percentage of excellent responses to the Pediatric Family Satisfaction in the ICU 24 decision-making items was 60.4% for PICU Supports versus 56.1% for the brochure (estimate, 3.57; SE, 4.53; 95% CI, -5.77 to 12.90; p = 0.44). Differences in secondary outcomes were not statistically significant. Most parents (91.1%; 113/124) described PICU Supports as "extremely" or "somewhat" helpful. CONCLUSIONS: Parents who received PICU Supports rated the intervention positively. Differences in decision-making satisfaction scores between those receiving PICU Supports and a brochure were not statistically significant. Interventions like PICU Supports should be evaluated in larger studies employing enhanced recruitment and retention of subjects.

Exploring the Issues Surrounding Clinical Exome Sequencing in the Prenatal Setting.

Exome sequencing is a clinical diagnostic test offered primarily for children and adults with suspected genetic conditions. The purpose of this study was to explore issues related to exome sequencing in a reproductive clinical setting. This was a qualitative study using semi-structured interviews. Participants were professionals drawn from four key stakeholder groups-healthcare providers, laboratory/industry, ethics, and government. Transcribed interviews were analyzed for emergent themes. Most participants saw potential clinical utility in offering prenatal exome sequencing for diagnostic purposes as opposed to screening. Participants expressed similar challenges already encountered with using exome sequencing in a pediatric setting, such as difficulty interpreting results and voiced many of the same concerns posed by prenatal testing, such as adequate pretest counseling. While previously reported issues and challenges were mentioned, participants agreed those difficulties are anticipated to be much greater with prenatal exome sequencing because of the scope of testing and the option for pregnancy decision-making. The results of this study help gain a better understanding of the implications of using exome sequencing in a prenatal setting. Development of guidelines is also warranted to aid clinical practice and laboratory standards for reporting prenatal results.

Communication During Pediatric Intensive Care Unit Family Conferences: A Pilot Study of Content, Communication, and Parent Perceptions.

While there is a robust literature describing family conferences (FCs) in adult intensive care units (ICUs), less information exists about FCs in pediatric ICUs (PICUs). We conducted a pilot study to describe the focus of discussion, communication patterns of health care team members (HTMs) and parents, and parents' perspectives about clinician communication during PICU FCs. We analyzed data from 22 video- or audiorecorded PICU FCs and post-FC questionnaire responses from 27 parents involved in 18 FCs. We used the Roter Interaction Analysis System (RIAS) to describe FC dialogue content. Our questionnaire included the validated Communication Assessment Tool (CAT). FCs were focused on care planning (n = 5), decision making (n = 6), and updates (n = 11). Most speech came from HTMs (mean 85%; range, 65-94%). Most HTM utterances involved medical information. Most parent utterances involved asking for explanations. The mean overall CAT score was 4.62 (using a 1-5 scale where 5 represents excellent and 1 poor) with a mean of 73.02% "excellent" responses. Update and care-planning FCs had lower CAT scores compared to decision-making FCs. The lowest scoring CAT items were "Involved me in decisions as much as I wanted," "Talked in terms I could understand," and "Gave me as much information as I wanted." These findings suggest that while health care providers spend most of their time during FCs relaying medical information, more attention should be directed at providing information in an understandable manner. More work is needed to improve communication when decision making is not the main focus of the FC.

Documentation of Fertility Preservation Discussions for Young Adults With Cancer: Examining Compliance With Treatment Guidelines.

BACKGROUND: Professional guidelines have been developed to promote discussion between providers and newly diagnosed young adults with cancer about the possibility of cancer treatment-related infertility, but previous research suggests many young adults fail to receive this information. The aim of this study was to examine rates of and factors predictive of oncologists' compliance with national guidelines for discussing potential treatment-related infertility with newly diagnosed young adults with cancer seen at an NCI-designated comprehensive cancer center. METHODS: We reviewed data from the electronic medical record for new clinic encounters between medical oncologists and young adults with cancer (ages 18-39 years) from 2010 to 2012. Data from oncologist discussions of fertility preservation were abstracted, as were patient (age, sex, race, ethnicity, cancer type) and oncologist (gender, graduation year from fellowship) characteristics. RESULTS: A total of 1,018 cases were reviewed, with 454 patients (mean, 31.5 years; 67.8% women) meeting inclusion criteria. Overall, 83% of patients were informed about potential treatment-related infertility, with patients with breast cancer (85% informed), Hodgkin lymphoma (95% informed), non-Hodgkin's lymphoma (94% informed), leukemia (88% informed), or testicular cancer (100% informed) more likely to be informed than those with other cancer types (60%-74% informed). There was a significant effect for patient sex (odds ratio, 3.57; CI, 1.33, 9.60; P=.012), with women being more likely to be informed than men. CONCLUSIONS: Reported compliance with fertility preservation guidelines was greater than published rates. Higher compliance rates in female patients and in patients with cancers more common among young adults may reflect greater awareness of fertility-related concerns among these patients and their providers.

Pediatric Oncology Providers' Attitudes and Practice Patterns Regarding Fertility Preservation in Adolescent Male Cancer Patients.

BACKGROUND: The aim of this study was to evaluate pediatric oncology providers' attitudes toward fertility preservation (FP), their use of educational materials, their approach to FP discussion, and their FP knowledge specifically pertaining to adolescent males. METHODS: A 40-item online survey was distributed to physicians, advanced practice nurses (APN), and nurses within pediatric oncology. RESULTS: About 78.7% of physicians, 81.4% of APN, and 51.9% of nurses reported high levels of comfort in discussing FP options with adolescent males (P<0.05). Fifty-one percent of physicians and 54.2% of APN reported using educational materials, compared with 38.9% of nurses (P<0.05). Regarding knowledge of FP technologies, 48.7% of physicians, 52.5% of APN, and 81.1% of nurses reported being unfamiliar with intracytoplasmic sperm injection (P<0.05). An overwhelming majority (92.9%) of respondents reported having no formal training in discussing FP. Finally, 84.8% of respondents believed formal training on this issue would be useful to them. CONCLUSIONS: This study illustrates an unmet need in the education of pediatric oncology providers, as knowledge gaps and discomfort are common themes reported by health care professionals within the context of adolescent male FP care. In addition, this study reveals a high level of receptiveness to FP training by these same providers.

Reproductive Endocrinologists' Utilization of Genetic Counselors for Oncofertility and Preimplantation Genetic Diagnosis (PGD) Treatment of BRCA1/2 Mutation Carriers.

Genetic counselors believe fertility preservation and preimplantation genetic diagnosis (PGD) discussions to be a part of their role when counseling BRCA1/2 mutation-positive patients. This study is the first to explore reproductive endocrinologists' (REI) practices and attitudes regarding involvement of genetic counselors in the care of BRCA1/2 mutation carriers seeking fertility preservation and PGD. A survey was mailed to 1000 REIs from Reproductive Endocrinology & Infertility (SREI), an American Society for Reproductive Medicine (ASRM) affiliate group. A 14.5 % response rate was achieved; data was analyzed using SPSS software. The majority of participating REIs were found to recommend genetic counseling to cancer patients considering fertility preservation (82 %) and consult with a genetic counselor regarding PGD for hereditary cancer syndromes (92 %). Additionally, REIs consult genetic counselors regarding PGD patient counseling (88 %), genetic testing (78 %), and general genetics questions (66 %). Two areas genetic counselors may further aid REIs are: elicitation of family history, which is useful to determine fertility preservation and PGD intervention timing (32 % of REIs utilize a cancer family history to determine intervention timing); and, interpretation of variants of uncertain significance (VOUS) as cancer panel genetic testing becomes more common (36 % of REIs are unfamiliar with VOUS). Given our findings, the Oncofertility Consortium® created an online resource for genetic counselors focused on fertility preservation education and communication strategies.

Shared decision-making behaviours in health professionals: a systematic review of studies based on the Theory of Planned Behaviour.

BACKGROUND: Shared decision making (SDM) requires health professionals to change their practice. Socio-cognitive theories, such as the Theory of Planned Behaviour (TPB), provide the needed theoretical underpinnings for designing behaviour change interventions. OBJECTIVE: We systematically reviewed studies that used the TPB to assess SDM behaviours in health professionals to explore how theory is being used to explain influences on SDM intentions and/or behaviours, and which construct is identified as most influential. SEARCH STRATEGY: We searched PsycINFO, MEDLINE, EMBASE, CINAHL, Index to theses, Proquest dissertations and Current Contents for all years up to April 2012. INCLUSION CRITERIA: We included all studies in French or English that used the TPB and related socio-cognitive theories to assess SDM behavioural intentions or behaviours in health professionals. We used Makoul & Clayman's integrative SDM model to identify SDM behaviours. DATA EXTRACTION AND SYNTHESIS: We extracted study characteristics, nature of the socio-cognitive theory, SDM behaviour, and theory-based determinants of the SDM behavioural intention or behaviour. We computed simple frequency counts. MAIN RESULTS: Of 12,388 titles, we assessed 136 full-text articles for eligibility. We kept 20 eligible studies, all published in English between 1996 and 2012. Studies were conducted in Canada (n = 8), the USA (n = 6), the Netherlands (n = 3), the United Kingdom (n = 2) and Australia (n = 1). The determinant most frequently and significantly associated with intention was the subjective norm (n = 15/21 analyses). DISCUSSION: There was great variance in the way socio-cognitive theories predicted SDM intention and/or behaviour, but frequency of significance indicated that subjective norm was most influential.

An exploration of patient and family engagement in routine primary care visits.

BACKGROUND: Older adults are commonly accompanied to routine medical visits. Whether and how family companion behaviours relate to visit processes is poorly understood. OBJECTIVE: To examine family companion behaviours in relation to older adults' medical visit processes. DESIGN AND PARTICIPANTS: Observational study of 78 accompanied primary care patients ages 65 and older. MAIN OUTCOME MEASURES: Medical visit communication (coded using RIAS), patient verbal activity (as a proportion of visit statements) and visit duration (in min), from audio recordings. RESULTS: Companions' facilitation of patient involvement was associated with greater patient question asking (P = 0.017) and orienting statements, less passive agreement (P = 0.004) and social talk (P = 0.013) and visits that were 3.4 min longer (P = 0.025). Facilitation of patient understanding was associated with less physician question asking (P = 0.004), visits that were 3.0 min longer (P = 0.031), and lower patient verbal activity (30.3% vs. 36.9% of visit statements; P = 0.028). Facilitation of doctor understanding was associated with greater patient biomedical information giving (P = 0.049). Autonomy detracting behaviours were not associated with visit duration but were associated with lower levels of patient verbal activity (36.3% vs. 29.1% of visit statements; P = 0.041). When companions assumed more behaviours, medical visits were incrementally longer (16.1, 19.5, 21.7 min, corresponding to 0-1, 2-4 and 5+ behaviours; P < 0.001 both contrasts), and patients were less verbally active (35.6%, 33.9%, 27.1% of visit statements; P = 0.09 and P = 0.009, respectively). DISCUSSION: Behaviours assumed by patients' companions were associated with visit communication, patient verbal activity and visit duration. CONCLUSIONS: Interventions to capitalize on family companions' presence may benefit medical visit processes.

Protect your heart: a culture-specific multimedia cardiovascular health education program.

South Asians, the second fastest growing racial/ethnic minority in the United States, have high rates of coronary heart disease. Few coronary heart disease prevention efforts target this population. The authors developed and tested a culture-specific, multimedia coronary heart disease prevention education program in English and Hindi for South Asians. Participants were recruited from community organizations in Chicago, Illinois, between June and October of 2011. Bilingual interviewers used questionnaires to assess participants' knowledge and perceptions before and after the patient education program. The change from pretest score to posttest score was calculated using a paired t test. Linear regression was used to determine the association between posttest scores and education and language. Participants' (N = 112) average age was 41 years, 67% had more than a high school education, and 50% spoke Hindi. Participants' mean pretest score was 15 (SD = 4). After the patient education program, posttest scores increased significantly among all participants (posttest score = 24, SD = 4), including those with limited English proficiency. Lower education was associated with a lower posttest score (ß = -2.2, 95% CI [-0.68, -3.83]) in adjusted regression. A culture-specific, multimedia patient education program significantly improved knowledge and perceptions about coronary heart disease prevention among South Asian immigrants. Culturally salient multimedia education may be an effective and engaging way to deliver health information to diverse patient populations.

Sun protection education for diverse audiences: need for skin cancer pictures.

Sun protection education is needed for kidney transplant recipients, whose increased risk of skin cancer could be ameliorated with sun protection. Cognitive interviews with 24 participants equally stratified among non-Hispanic White, non-Hispanic Black, and Hispanic/Latino kidney transplant recipients were performed to evaluate a sun protection education workbook. Study participants were recruited over the phone using a registry of 700 kidney transplant recipients. Participants included 12 women and 12 men with a median age of 52. In 16 of the cognitive interviews with non-Hispanic Blacks and Hispanic/Latinos, pictures of skin cancer were requested by the participants in order to see the appearance of skin cancer. Kidney transplant recipients with skin of color did not consider themselves at risk to develop skin cancer and wanted to see examples of skin cancer occurring on people with skin of color. Based on these results, the workbook was modified to include pictures of squamous cell carcinoma on varying skin tones. Then, 8 participants evaluated the revised workbook in cognitive interviews and found the photographs acceptable and necessary to demonstrate the severity of skin cancer and personalize their risk of developing skin cancer. The participants progressed from having knowledge of skin cancer to believing that they could develop skin cancer because they observed skin cancers on people with their skin tone. Using pictures of skin cancers occurring on people with similar skin tone may heighten a kidney transplant recipients' sense of vulnerability and possibly improve the use of sun protection.

The Development of a Communication Tool to Facilitate the Cancer Trial Recruitment Process and Increase Research Literacy among Underrepresented Populations.

Despite increasing need to boost the recruitment of underrepresented populations into cancer trials and biobanking research, few tools exist for facilitating dialogue between researchers and potential research participants during the recruitment process. In this paper, we describe the initial processes of a user-centered design cycle to develop a standardized research communication tool prototype for enhancing research literacy among individuals from underrepresented populations considering enrollment in cancer research and biobanking studies. We present qualitative feedback and recommendations on the prototype's design and content from potential end users: five clinical trial recruiters and ten potential research participants recruited from an academic medical center. Participants were given the prototype (a set of laminated cards) and were asked to provide feedback about the tool's content, design elements, and word choices during semi-structured, in-person interviews. Results suggest that the prototype was well received by recruiters and patients alike. They favored the simplicity, lay language, and layout of the cards. They also noted areas for improvement, leading to card refinements that included the following: addressing additional topic areas, clarifying research processes, increasing the number of diverse images, and using alternative word choices. Our process for refining user interfaces and iterating content in early phases of design may inform future efforts to develop tools for use in clinical research or biobanking studies to increase research literacy.