Most AYAs in our study reported a number of reproductive concerns and fertility-related distress after treatment, which may affect other areas of psychosocial functioning. Females may be more at-risk for distress than males, particularly in situations of uncertainty and limited knowledge. Future work should explore how to best incorporate fertility-related informational and support services more fully into survivorship care. Implications for survivorship care are discussed.

BACKGROUND Oropharyngeal cancers are increasingly associated with human papillomavirus (HPV). Little is known about the experience of patients receiving this diagnosis. METHODS Semi-structured interviews were conducted with 10 survivors of HPV-related oropharynx cancer. The interviews were transcribed and recurring themes were identified. RESULTS Physicians were a trusted source of information regarding HPV. Framing the diagnosis in terms of prognosis resonated with patients. The uncertainty about transmission, latency, and communicability colored the dialogue about HPV. Despite some understanding of prevalence and transmission, patients worried about their partner’s risk. Patients sought information about HPV on the internet, but it was not easily navigable. Emotional reactions to the diagnosis remained mostly cancer-centric rather than HPV-centric. A patient education handout was developed in response to patient questions. CONCLUSIONS Additional educational resources explaining the facts about HPV in HNSCC in a consistent way including content of highest priority to patients may improve understanding of HPV.

HPV vaccination rates remain low in the fast growing Latino children population while we continue to observe large HPV-associated cancer disparities in the Latino population. In this study, we sought to elucidate Latino immigrant parents’ barriers to obtaining the HPV vaccine for their children. Five focus groups were conducted with Latino immigrant parents of minors (i.e., 9–17 year old) who had not yet initiated the HPV vaccine series. Three major findings were identified from the focus groups: (1) low levels of awareness and knowledge of HPV and the HPV vaccine, (2) high confidence that parent can get the vaccine for their eligible child and (3) lack of provider recommendation as the main barrier to vaccination. Children of Latino immigrant parents could benefit from increased provider recommendation for the HPV vaccine while providing tailored HPV information to parents.

Background: Latinos, whose views are infrequently examined in genomic research, may be at risk of missing out on the benefits of genomic medicine. Aims: To explore this possibility, we conducted a qualitative study of awareness and attitudes about genetic testing among Latinos with lower acculturation in New York City. Methods: We conducted four focus groups (7 English-speaking men, 5 Spanish-speaking men, 13 English-speaking women and 13 Spanish-speaking women) to explore factors that influence the adoption of new innovations through the discussion of genetic testing in general, and a hypothetical vignette describing a genetic test for skin cancer risk, in particular. Results: Through inductive thematic text analysis of focus group transcripts, our multidisciplinary team identified themes within knowledge and attitudes, communication and sources of information, anticipated responses, factors that may increase adoption, and barriers to adoption of genetic testing. Specifically, a majority of participants expressed some degree of uncertainty regarding the purpose of genetic tests and information these tests provide, rarely discussed genetic testing with others in their social networks, and expressed concerns about the misuse of and possible adverse emotional responses to genetic information. However, participants also expressed high levels of interest in receiving a skin cancer genetic test in response to the vignette and believed that receiving actionable health information was a primary reason to consider testing. Gender-based differences in perceived barriers to testing emerged. Conclusions: The results highlight beliefs and barriers that future interventions could target to help ensure that Latinos have adequate understanding of and access to genomic medicine advances.

Background Little research has been conducted on melanoma survivors and important opportunities exist for research in this understudied population. The study objective was to examine experiences of melanoma survivors regarding sun protection, surveillance practices, psychosocial and family concerns using focus groups. Methods We identified patients (≥18 years) treated at Memorial Sloan-Kettering Cancer Center (USA) during 1996–2005 with invasive primary cutaneous melanoma, stages I–III. We stratified focus groups by age (<50 vs ≥50 years) and years since diagnosis (1 to <5 years vs 5–10 years). We performed qualitative thematic text analysis, which involved independent data review by multiple analysts (n = 2) followed by interpretation of key findings via consensus work. Results Forty-eight survivors composed the final sample. Most did not conduct routine skin self-examinations. Survivors became more conscious of sun exposure and expanded their sun protection; some experienced anxiety if caught unprotected in the sun. Survivors were aware of the increased melanoma risk for family members, yet many did not discuss risk reduction. Melanoma diagnosis elevated the importance of retaining health insurance and purchasing life insurance for younger survivors. We did not identify significance difference between those diagnosed more or less recently. Conclusions We identified areas of high priority to melanoma survivors: skin self-examination, anxiety associated with sun exposure, familial risk communication, and maintaining health insurance benefits. The implications for cancer survivors are that these behavioral data will help to design health promotion and prevention programs that are tailored to melanoma survivors’ risk status.

Objective Most cancer patients desire information about care options at the end of life, including cardiopulmonary resuscitation (CPR). Communicating such care options can be challenging and is part of advance care planning (ACP). Our prior studies with video educational media produced data on patients’ categoric preferences (yes/no/unsure) for CPR; however, the thematic underpinnings of these educated preferences in patients treated for advanced cancer aren’t well known. Methods Qualitative thematic content analysis of participants’ responses in a randomized trial of an educational video (V) or narrative (N) about CPR in patients with advanced gastrointestinal cancers. Responses were independently coded and categorized for thematic content by two reviewers. Results Of 54 study participants, 26 total (41% of V arm, 56% of N arm) articulated questions, comments, or both. Reviewer analyses demonstrated thematic consensus and resulted in seven distinct themes listed in decreasing order of prevalence: (a) ACP should be started early; (b) educational information about CPR affirmed participants’ existing beliefs/knowledge/values about advanced illness; (c) participants were apprehensive about ACP but wanted to discuss it; (d) gaps in knowledge about ACP emerged; (e) CPR information was helpful/acceptable; (f) physicians should be involved in ACP; and (g) medical questions about critical illness arose. Conclusions Findings identified that while sometimes difficult to discuss, advance care planning is desired, deemed helpful, and ideally begun early by clinicians, and that video education is an appropriate and affirming initiator of discussions. These themes are incorporated into our ongoing research on cancer patient-specific values and education about care options.

Purpose Slow accrual to cancer clinical trials impedes the progress of effective new cancer treatments. Poor physician–patient communication has been identified as a key contributor to low trial accrual. Question prompt lists (QPLs) have demonstrated a significant promise in facilitating communication in general, surgical, and palliative oncology settings. These simple patient interventions have not been tested in the oncology clinical trial setting. We aimed to develop a targeted QPL for clinical trials (QPL-CT). Method Lung, breast, and prostate cancer patients who either had (trial experienced) or had not (trial naive) participated in a clinical trial were invited to join focus groups to help develop and explore the acceptability of a QPL-CT. Focus groups were audio-recorded and transcribed. A research team, including a qualitative data expert, analyzed these data to explore patients’ decision-making processes and views about the utility of the QPL-CT prompt to aid in trial decision making. Results Decision making was influenced by the outcome of patients’ comparative assessment of perceived risks versus benefits of a trial, and the level of trust patients had in their doctors’ recommendation about the trial. Severity of a patient’s disease influenced trial decision making only for trial-naive patients. Conclusion Although patients were likely to prefer a paternalistic decision-making style, they expressed valuation of the QPL as an aid to decision making. QPL-CT utility extended beyond the actual consultation to include roles both before and after the clinical trial discussion.

Objective The purpose of this study was to develop an in-depth understanding of papillary microcarcinoma (PMC) patients' decision-making process when offered options of surgery and active surveillance.Methods Fifteen PMC patients and 6 caregivers participated in either a focus group or individual interview. Focus groups were segmented by patients' treatment choice. Primary themes were identified in transcripts using thematic text analysis. Conclusions Several factors influenced participants' treatment choice, with similarities and differences noted between surgery and active surveillance subsamples. Many of the emergent themes are consistent with research on decision making among localized prostate cancer patients. Findings suggest that participants from both PMC treatment subsamples are motivated to reduce illness and treatment-related uncertainty. Results