Alexis Koskan

Use and taxonomy of social media in cancer-related research: a systematic review.

Little is known about how social media are used in cancer care. We conducted a systematic review of the use and taxonomy of social media in cancer-related studies, in PubMed, Web of Knowledge, CINAHL, and Google Scholar. We located 1350 articles published through October 2013; 69 met study inclusion criteria. Early research (1996-2007) was predominantly descriptive studies of online forums. Later, researchers began analyzing blogs, videos shared on YouTube, and social networking sites. Most studies (n = 62) were descriptive, and only 7 reported intervention studies published since 2010. Future research should include more intervention studies to determine how social media can influence behavior, and more empirical research is needed on how social media may be used to reduce health disparities.

Patient education in allogeneic hematopoietic cell transplant: What patients wish they had known about quality of life

Quality of life (QOL) is increasingly recognized as an important clinical outcome of hematopoietic cell transplantation (HCT), but patient education is often overlooked. The aim of the current qualitative study was to examine education regarding post-HCT QOL from the patient’s perspective. Allogeneic HCT recipients participated in one of four focus groups. Participants were asked to recall what they had been told about post-HCT QOL as they were preparing for transplant, how their QOL differed from what they expected and how to educate future patients about post-HCT QOL. Verbatim transcripts were coded for both a priori and emergent themes using content analysis. A total of 24 patients participated (54% female, mean age 51, range 23–73 years). Participants frequently expressed the desire for additional education regarding post-HCT QOL, particularly late complications. They noted that late complications were often unexpected, had a profound impact on their QOL and threatened their ongoing sense of recovery. They emphasized that the timing, content and format of education regarding QOL should be flexible to meet their diverse needs. Findings from the current study draw attention to the importance of patient education regarding post-HCT QOL as well as additional QOL research designed with patient education in mind.

Preparing Promotoras to Deliver Health Programs for Hispanic Communities: Training Processes and Curricula

Training is an essential component of health programs that incorporate promotoras de salud (the Spanish term for community health workers) in the delivery of health education and behavioral interventions to Hispanics. During training sessions, promotoras are exposed to information and skill-building activities they need to implement the health programs. This analysis was one component of a broader study which explored program planners’ approaches to recruiting and training promotoras to deliver and sustain health promotion programs for Hispanic women. The purpose of this study was to examine promotora-curriculum and training processes used to prepare promotoras to deliver health programs. The authors examined transcripts of 12 in-depth interviews with program planners and conducted a content analysis of seven different training materials used in their respective promotora programs. Interview themes and narratives included program planners’ varying conceptualizations of promotora-training, including their personal definitions of “training the trainer,” the practice of training a cadre of promotoras before selecting those best fit for the program, and the importance of providing goal-directed, in-depth training and supervision for promotoras. The content analysis revealed a variety of strategies used to make the training materials interactive and culturally competent. Study implications describe the importance of planners’ provision of ongoing, goal-directed, and supervised training using both appropriate language and interactive methods to engage and teach promotoras.

Caregivers' quality of life after blood and marrow transplantation: a qualitative study

A sizable literature has documented the challenges of providing care to a family member with cancer, although fewer studies have reported on caregivers of allogeneic hematopoietic cell transplantation (HCT) recipients. Existing studies of HCT caregivers suggest that they are at risk for distress. For example, prior to HCT, caregivers report significantly higher levels of anxiety, traumatic stress, and insomnia than population norms (1, 2). Several years after transplant, risk of depression among spouses of HCT recipients is 3.5 times greater than that of similar peers (3). Spouses of HCT recipients also report less social support, greater marital dissatisfaction, greater loneliness, and less spiritual well-being than their peers (3). In qualitative interviews of HCT recipients and spouses, spouses were more likely than patients to report negative life changes as the result of transplant (4). The goal of the current study was to qualitatively examine post-HCT quality of life from the caregiver’s perspective. As part of a larger qualitative study of patient education regarding quality of life after allogeneic HCT, patients and caregivers were recruited from a single institution to participate in separate focus groups. At this institution, caregivers are required to attend a class regarding how to care for an allogeneic HCT recipient. Caregiver support groups are available as well. Results of the patient focus groups have been reported previously (5). Caregivers were asked about their quality of life and their perceptions of the patient’s quality of life, with a focus on how the transplant team could better prepare future caregivers for life after transplant. As the study was exploratory in nature, there were no a priori hypotheses. Caregivers were nominated by eligible patient participants (5). To be eligible, caregivers had to be able to speak and read English and provide informed consent. Caregivers attended one of four caregiver-only focus groups held in November 2011 and March 2012. Groups ranged in size from three to six caregivers. Details of study methodology have been described previously (5). Focus group questions are listed in Table 1. A total of 16 caregivers participated in the focus groups. Participants had a median age of 55 (range 25-80). The majority was Caucasian (100%), non-Hispanic (88%), married (94%), had not completed college (62%), and reported a current annual household income of US

Patients’ Perceptions of Colorectal Cancer Screening Tests and Preparatory Education in Federally Qualified Health Centers

40,000 a year or more (79%). Representative quotes from caregivers are displayed in Table 2. Nearly all participants agreed that providing care to a HCT recipient entailed significant physical and emotional demands. Several participants noted that caregiving required permanent life changes and a lifelong commitment to the patient. Social isolation was commonly reported and perceived to be detrimental for both the patient and caregiver. Many described constant vigilance about disinfecting their surroundings to prevent infection, sometimes far longer than required by the transplant team. Some caregivers reported a loss of identity as they no longer engaged in the activities they used to find meaningful. Although some caregivers reported significant emotional support from family and friends, others felt overlooked as loved ones’ concerns were typically centered exclusively on the patient. Caregivers reported feeling unprepared for the severity and duration of emotional and physical changes in the patient. They also expressed difficulty determining how much they should push patients to engage in activities the caregivers perceived to be beneficial (e.g., exercising, resuming previous hobbies). Nearly all caregivers reported that their relationship with the patient was significantly changed due to the transplant process. Some felt that the transplant brought them closer together while others perceived significant strain in the relationship. Caregivers commonly voiced feelings of gratitude for the patient’s survival in addition to insomnia, helplessness, guilt, fatigue, and fear about cancer recurrence. They also described high levels of anxiety at each outpatient follow-up appointment, which were temporarily assuaged by hearing the patient’s blood counts. Although caregivers described significant negative emotions, few reported receiving psychosocial services. In general, caregivers were reluctant to discuss ways in which they took care of themselves. Many reported guilt about focusing on their own needs. Prayer, use of social support, and focusing on one day at a time were the most commonly reported coping strategies. Use of web-based sharing systems such as blogging, email, or other social networking sites to inform family and friends of the patient’s progress and receive support was also widely perceived to be helpful. Caregivers reported being well-informed regarding physical symptoms patients were likely to experience during the acute transplant period, symptom management, and other requirements for daily care of an HCT recipient (e.g., flushing lines, precautions against infection). Caregivers wanted more information regarding how to cope with emotional and cognitive changes in the patient. It was suggested a mentoring program be created, in which names and phone numbers of experienced caregivers were provided to caregivers new to HCT. In general, caregivers echoed many of the same themes as patients (5), including greater need for information regarding post-transplant morbidities such as graft-versus-host disease (GVHD). Caregivers also provided unique information about the patients’ experiences, most notably observed changes in personality, difficulty handling stress, and cognitive impairment. Caregivers participating in the current study frequently expressed significant unmet needs for information and support. We are aware of only one previous study of an intervention for caregivers of allogeneic HCT recipients, which found that caregivers perceived emotional expression to be helpful in dealing with stress (6). Caregivers may also benefit from greater information regarding long-term morbidities, tools to help manage their own and the patient’s emotional distress, and awareness of the importance of self-care and outside support (7). Studies among cancer patients suggest that this type of intervention can significantly reduce caregiver burden and improve quality of life (8). Although evidence-based caregiving interventions are currently lacking in HCT, caregivers should be directed towards resources available through cancer- and transplant-specific websites (e.g., National Marrow Donor Program, National Bone Marrow Transplant Link, Leukemia and Lymphoma Society).

Exploring the Perceptions of Anal Cancer Screening and Behaviors Among Gay and Bisexual Men Infected With HIV.

This study explored federally qualified health center (FQHC) patients’ perceptions about colorectal cancer screening (CRCS) tests, including immunochemical fecal occult blood tests (iFOBT), as well as preferences for receiving in-clinic education about CRCS. Eight mixed gender focus groups were conducted with 53 patients. Findings centered on three thematic factors: (1) motivators and impediments to CRCS, (2) test-specific preferences and receptivity to iFOBTs, and (3) preferences for entertaining and engaging plain language materials. Results informed the development of educational priming materials to increase CRCS using iFOBT in FQHCs.

Making it work: health care provider perspectives on strategies to increase colorectal cancer screening in federally qualified health centers.

BACKGROUND The incidence of anal cancer is on the rise among HIV-infected men who have sex with men (MSM). Given the increasing availability of screening, this study explored anal cancer screening awareness and behaviors among MSM infected with HIV. METHODS In-depth interviews were conducted with 58 MSM infected with HIV. RESULTS Other than 2 participants treated for anal cancer and 3 treated for precancerous anal lesions, the majority of participants had never heard of anal cancer. Men reported lack of awareness and recommendations from their health care professionals as the greatest barriers to screening. Upon learning about their risk for anal cancer and the availability of screening, the men were eager to discuss screening with their physicians. Participants provided numerous recommendations for future interventions, including training health care professionals to promote screening, disseminating information pertaining to anal cancer through social networks, and creating media campaigns to raise awareness about the need to screen for this type of cancer. CONCLUSIONS Future intervention work should focus on ensuring that health care professionals, particularly among HIV/primary care specialists, promote screening for anal dysplasia. It is critical that intervention methods use a community-based approach to raise awareness about the need to screen for anal cancer, especially among MSM infected with HIV.

Discussion of First-Degree Relatives’ Colorectal Cancer Risk: Survivors’ Perspectives

Colorectal cancer screening (CRCS) rates are low among men and women who seek health care at federally qualified health centers (FQHCs). This study explores health care providers’ perspectives about their patient’s motivators and impediments to CRCS and receptivity to preparatory education. A mixed methods design consisting of in-depth interviews, focus groups, and a short survey is used in this study. The participants of this study are 17 health care providers practicing in FQHCs in the Tampa Bay area. Test-specific patient impediments and motivations were identified including fear of abnormal findings, importance of offering less invasive fecal occult blood tests, and need for patient-centered test-specific educational materials in clinics. Opportunities to improve provider practices were identified including providers’ reliance on patients’ report of symptoms as a cue to recommend CRCS and overemphasis of clinic-based guaiac stool tests. This study adds to the literature on CRCS test-specific motivators and impediments. Providers offered unique approaches for motivating patients to follow through with recommended CRCS and were receptive to in-clinic patient education. Findings readily inform the design of educational materials and interventions to increase CRCS in FQHCs.

Abstract B72: HPV knowledge and screening among gay men of color in South Florida

Although screening reduces colorectal cancer (CRC) incidence and mortality, screening rates are low, particularly among CRC patients’ first-degree relatives (FDRs). Little is known about discussion of family members’ risk of CRC among patients and their health care providers or with their FDRs. The purpose of this research, guided by the Protection Motivation Theory, was to assess patients’ patterns of disclosure of CRC diagnosis to adult siblings and/or children and discussion of familial risk by healthcare providers. A cross-sectional sample of patients who received care at a comprehensive cancer center was recruited to complete telephone-based interviews related to disclosure of CRC diagnosis to FDRs, recall of physician counseling about familial risk, and patients’ perception of CRC risk to FDRs. Sixty-nine patients completed the interview. Most participants (n = 67, 97%) had informed their adult children or siblings of their CRC diagnosis to keep their family informed of their health status (n = 15, 22%) and to encourage FDRs to screen for CRC (n = 14, 20%). More than half of the participants’ physicians (n = 38, 55%) discussed FDRs’ risk of developing CRC with the patient. However, a substantial proportion of patients reported no physician discussion of this risk (n = 28, 41%). Data from this study may guide the development of interventions to facilitate physician discussion and counseling of CRC patients about their FDRs’ risk for CRC. However, future studies should explore whether FDRs are likely to be screened after becoming aware of their family member’s diagnosis of CRC.

Sustainability of promotora initiatives: program planners' perspectives.

Introduction: Squamous cell carcinoma of the anus (SCCA), also known as anal cancer, is on the rise, particularly among HIV-infected gay and bisexual men. The disease is caused by persistent infection of two strains of the human papillomavirus (HPV), the most common sexually transmitted infection worldwide. Persistent infection of two cancer-causing strains (16 and 18) leads to the development of high-grade squamous intraepithelial lesions (HSIL) in the anal canal which, left untreated, can develop into SCCA. Two different strains (6 and 11) cause non-cancerous genital warts, a condition more difficult to treat among HIV-infected populations. SCCA can be prevented through timely screening for HSIL via anal Papanicolau (Pap) smear or high resolution anoscopy. However, HIV-infected gay and bisexual men are continuing to suffer disproportionate burden of this disease due to various reasons included underutilization of anal cancer screening. Therefore, this study explored what HIV-infected gay and bisexual men understand about HPV, SCCA, the need to screen for this disease, and their preferences for receiving information about SCCA screening. Methods: Authors conducted in-depth interviews with 58 HIV-infected gay and bisexual men and analyzed the data using a qualitative content analysis approach. Results: Participants9 HPV and SCCA awareness differed based on whether or not they had been diagnosed for either HSIL (n=3) or SCCA (n=3) compared to those who were never diagnosed for either condition. The men treated for HSIL (n=3) understood the relationship between HPV and the precancerous lesions while men diagnosed with SCCA (n=3) did not know this cancer was caused by HPV. On the other hand, men with no past diagnosis of HSIL or SCCA were not aware of HPV and its potential health repercussions. The few participants who had heard of HPV perceived the virus to be a women9s health issue. Screening behaviors varied based on the clinic where participants received HIV primary care. Men who regularly received care at one specific federally qualified health center were screened for HSIL within the previous two years, and they reported that provider recommendation was the greatest facilitator that led to their screening uptake. Men receiving care at other locations or who were currently out of care did not realize the need to screen for HSIL or SCCA. They reported lack of awareness about SCCA and lack of provider recommendation to be the greatest barriers to anal cancer screening. Other barriers cited include embarrassment of screening procedures and the fear of being diagnosed with cancer. However, as men learned of their risk for cancer and upon realizing the severity of this potential diagnosis, they described their desire to screen in the near future. Participants: recommended numerous health education strategies to raise awareness about the need to screen for SCCA among HIV-infected gay and bisexual men. The most common recommendation was to ensure that HIV primary care clinicians promoted screening for HSIL and SCCA. They also recommended mass media campaigns in which educational posters and informational advertisements could be posted in public locations such as bus stops or in local print media. Conclusion: Similar to past research, HIV-infected gay and bisexual men reported willingness to screen for anal cancer, and they requested more widely communicated information about the risk for anal cancer and the need to screen. Future intervention work should use a community-based approach to raise awareness about SCCA among HIV-infected gay and bisexual men. Further, it is critical to ensure that both HIV primary care providers as well as general primary care providers promote HSIL screening, particularly among HIV-infected gay and bisexual men to prevent the development of anal cancer. Citation Format: Alexis Koskan, Natalie Leblanc. HPV knowledge and screening among gay men of color in South Florida. [abstract]. In: Proceedings of the Eighth AACR Conference on The Science of Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; Nov 13-16, 2015; Atlanta, GA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2016;25(3 Suppl):Abstract nr B72.