Stakeholder engagement and participation in the design, delivery, and dissemination of the ostomy self-management telehealth (OSMT) program.

PURPOSE: Stakeholder engagement is increasingly integrated into clinical research processes. We conducted a mixed methods analysis to describe stakeholders' (peer ostomates, ostomy nurses, telehealth engineers) perceptions of their engagement and participation in a multisite, randomized trial of a telehealth-delivered curriculum for cancer survivors with ostomies. METHODS: Stakeholder notes were analyzed using narrative analysis. We constructed a 15-item survey that assessed the following areas: adherence to stakeholder engagement principles, engagement/influence throughout the study process, impact on perceived well-being, and satisfaction. Stakeholders were invited to complete the survey anonymously. Quantitative survey data were tabulated through summary statistics. RESULTS: Across intervention sessions, an average of 7.7 ± 1.4 stakeholders attended and 2.6 ± 1.4 submitted a note per session. The survey response rate was 73% (11/15). Stakeholders reported high agreement that the study adhered to engagement principles (91% reciprocal relationships, 100% co-learning, partnership, and transparency/honesty/trust). They felt highly engaged (18% moderate, 73% great deal) and that they had influence on study initiation (27% moderate, 55% great deal), intervention delivery (9% moderate, 82% great deal), fidelity assessment (18% moderate, 73% great deal), analysis and interpretation (55% moderate, 27% great deal), and dissemination (45% moderate, 45% great deal). They reported high overall satisfaction with roles (91% great deal), believed the program was helpful for participants (91%), and that serving on study team benefited their own well-being (100%). CONCLUSIONS: Our strategy of stakeholder inclusion led to high engagement, input, satisfaction, and belief in success of program, which could be mirrored in other trials.

Cancer survivors' greatest challenges of living with an ostomy: findings from the Ostomy Self-Management Telehealth (OSMT) randomized trial.

OBJECTIVES: An ostomy results in lifelong quality of life changes for a cancer survivor. We describe the greatest challenges reported from a randomized trial of cancer survivors with stomas (ostomies). METHODS: Cancer survivors with ostomies participating in a multi-site randomized prospective trial of an Ostomy Self-Management Telehealth (OSMT) program versus usual care (UC) were surveyed at six months post accrual. An open-ended question requested greatest challenges after ostomy surgery. Quantitative descriptive and qualitative analyses were used to examine greatest challenges reported. RESULTS: A total of 118 trial participants identified greatest challenges with 55 in the OSMT and 63 in the UC. Six conceptual domains were used to code comments-physical, psychological, social, and spiritual quality of life; ostomy-specific issues, and healthcare issues. The OSMT contributed 187 comments, and UC contributed 235 comments. Ostomy specific issues and social well-being had the most comments overall with UC contributing more comments in all domains except physical well-being. Word Clouds revealed post-operative and treatment-related issues and going out in public as the most common challenges in both groups. Word Clouds compared types of ostomies revealing bowel function challenges (colostomy group), difficulties going out in public (ileostomy group), and positive support (urostomy group). CONCLUSIONS: Fewer challenges submitted by the OSMT group provide the beginning evidence of the OSMT program impact. Dominant challenges across both groups were social well-being and ostomy care. Challenges varied by type of ostomy. Findings support long-term care and support for all cancer survivors with ostomies. TRIAL REGISTRATION: NCT02974634.

Impact of pet dog or cat exposure during childhood on mental illness during adolescence: a cohort study.

BACKGROUND: In our prior study of 643 children, ages 4-11 years, children with pet dogs had lower anxiety scores than children without pet dogs. This follow-up study examines whether exposure to pet dogs or cats during childhood reduces the risk of adolescent mental health (MH) disorders. METHODS: Using a retrospective cohort study design, we merged our prior study database with electronic medical record (EMR) data to create an analytic database. Common MH diagnoses (anxiety, depression, ADHD) occurring from the time of prior study enrollment to 10/27/21 were identified using ICD-9 and ICD-10 codes. We used proportional hazards regression to compare time to MH diagnoses, between youths with and without pets. From 4/1/20 to 10/27/21, parents and youth in the prior study were interviewed about the amount of time the youth was exposed to a pet and how attached s/he was to the pet. Exposure included having a pet dog at baseline, cumulative exposure to a pet dog or cat during follow-up, and level of pet attachment. The main outcomes were anxiety diagnosis, any MH diagnosis, and MH diagnosis associated with a psychotropic prescription. RESULTS: EMR review identified 571 youths with mean age of 14 years (range 11-19), 53% were male, 58% had a pet dog at baseline. During follow-up (mean of 7.8 years), 191 children received a MH diagnosis: 99 were diagnosed with anxiety (52%), 61 with ADHD (32%), 21 with depression (11%), 10 with combined MH diagnoses (5%). After adjusting for significant confounders, having a pet dog at baseline was associated with lower risk of any MH diagnosis (HR = 0.74, p = .04) but not for anxiety or MH diagnosis with a psychotropic prescription. Among the 241 (42%) youths contacted for follow-up, parent-reported cumulative exposure to pet dogs was borderline negatively associated with occurrence of any MH diagnosis (HR = 0.74, p = .06). Cumulative exposure to the most attached pet (dog or cat) was negatively associated with anxiety diagnosis (HR = 0.57, p = .006) and any MH diagnosis (HR = 0.64, p = .013). CONCLUSION: Cumulative exposure to a highly attached pet dog or cat is associated with reduced risk of adolescent MH disorders.

An Ostomy Self-management Telehealth Intervention for Cancer Survivors: Technology-Related Findings From a Randomized Controlled Trial.

BACKGROUND: An Ostomy Self-management Telehealth (OSMT) intervention by nurse educators and peer ostomates can equip new ostomates with critical knowledge regarding ostomy care. A telehealth technology assessment aim was to measure telehealth engineer support requirements for telehealth technology-related (TTR) incidents encountered during OSMT intervention sessions held via a secure cloud-based videoconferencing service, Zoom for Healthcare. OBJECTIVE: This paper examines technology-related challenges, issues, and opportunities encountered in the use of telehealth in a randomized controlled trial intervention for cancer survivors living with a permanent ostomy. METHODS: The Arizona Telemedicine Program provided telehealth engineering support for 105 OSMT sessions, scheduled for 90 to 120 minutes each, over a 2-year period. The OSMT groups included up to 15 participants, comprising 4-6 ostomates, 4-6 peer ostomates, 2 nurse educators, and 1 telehealth engineer. OSMT-session TTR incidents were recorded contemporaneously in detailed notes by the research staff. TTR incidents were categorized and tallied. RESULTS: A total of 97.1% (102/105) OSMT sessions were completed as scheduled. In total, 3 OSMT sessions were not held owing to non-technology-related reasons. Of the 93 ostomates who participated in OSMT sessions, 80 (86%) completed their OSMT curriculum. TTR incidents occurred in 36.3% (37/102) of the completed sessions with varying disruptive impacts. No sessions were canceled or rescheduled because of TTR incidents. Disruptions from TTR incidents were minimized by following the TTR incident prevention and incident response plans. CONCLUSIONS: Telehealth videoconferencing technology can enable ostomates to participate in ostomy self-management education by incorporating dedicated telehealth engineering support. Potentially, OSMT greatly expands the availability of ostomy self-management education for new ostomates. TRIAL REGISTRATION: ClinicalTrials.gov NCT02974634; https://clinicaltrials.gov/ct2/show/NCT02974634.

Health-related quality of life among transgender and gender expansive youth at a rural gender wellness clinic.

PURPOSE: To address a critical gap in the existing Health-Related Quality of Life (HRQOL) literature by quantifying and describing HRQOL among transgender and gender expansive (TG/GE) youth at a rural gender clinic and comparing the HRQOL of these youth to age-stratified United States (U.S.) population standards. METHODS: This cross-sectional study includes results of the baseline HRQOL assessment of 141 TG/GE patients enrolled in the Gender Wellness Center (GWC) Pediatric Patient Registry. HRQOL was assessed using the Child Health Questionnaire-Child Form 87 (CHQ-CF87; ages < 18) and the Short Form-36 (SF-36v2; ages 18-21). Mean subscale scores were compared to the most current U.S. population standards available. RESULTS: On all but one of the CHQ-CF87 subscales, TG/GE youth scored significantly lower than 2015-2016 U.S. general population youth and youth with two chronic conditions. On the SF-36v2, TG/GE youth scored significantly higher than 2009 U.S. standards on all physical health domains but lower on all but one of the mental health domains. CONCLUSIONS: Cross-sectional HRQOL data from a registry of TG/GE youth indicate significantly poorer mental health measures as compared with the U.S. general population. Longitudinal assessments are needed to evaluate whether HRQOL improves with gender-affirming care. Future studies should aim to identify sociocultural factors at the intersection of rurality and health that contribute to diminished HRQOL among rural TG/GE youth.

Costs of an ostomy self-management training program for cancer survivors.

OBJECTIVE: To measure incremental expenses to an oncologic surgical practice for delivering a community-based, ostomy nurse-led, small-group, behavior skills-training intervention to help bladder and colorectal cancer survivors understand and adjust to their ostomies and improve their health-related quality of life, as well as assist family caregivers to understand survivors' needs and provide appropriate supportive care. METHODS: The intervention was a 5-session group behavior skills training in ostomy self-management following the principles of the Chronic Care Model. Faculty included Wound, Ostomy, and Continence Nurses (WOCNs) using an ostomy care curriculum. A gender-matched peer-in-time buddy was assigned to each ostomy survivor. The 4-session survivor curriculum included the following: self-management practice and solving immediate ostomy concerns; social well-being; healthy lifestyle; and a booster session. The single family caregiver session was coled by a WOCN and an ostomy peer staff member and covered relevant caregiver and ostomate support issues. Each cohort required 8 weeks to complete the intervention. Nonlabor inputs included ostomy supplies, teaching materials, automobile mileage for WOCNs, mailing, and meeting space rental. Intervention personnel were employed by the University of Arizona. Labor expenses included salaries and fringe benefits. RESULTS: The total incremental expense per intervention cohort of 4 survivors was $7246 or $1812 per patient. CONCLUSIONS: A WOCN-led group self-help ostomy survivorship intervention provided affordable, effective, care to cancer survivors with ostomies.

A chronic care ostomy self-management program for cancer survivors.

BACKGROUND: Individuals with ostomies experience extensive changes in health-related quality of life (HRQOL) and daily routine. Patients and families are typically forced to use trial and error to improve self-management. METHODS: This is a longitudinal one-group design pilot study of a five-session ostomy self-care curriculum based on the Chronic Care Model to improve HRQOL and self-management for cancer survivors with ostomies. Participants were surveyed to evaluate each session. Multiple instruments were administered to examine outcomes at baseline, post-intervention, and at 6-month follow-up (Patient Activation Measure, self-efficacy, Hospital Anxiety and Depression Scale, Ways of Coping, Group Health Association of America Satisfaction with ostomy care survey, and the City of Hope Quality of Life Ostomy). Changes from pre-intervention to post-intervention and pre-intervention to follow-up were evaluated with paired t-tests. Text responses were coded and evaluated for important themes and recommendations. RESULTS: Thirty-eight subjects participated in the study. Most had a history of rectal cancer (60.5%) or bladder cancer (28.9%). Participants rated the overall program high (4.4-4.8 on 5-point scale). Text feedback indicated that participants enjoyed the group forums, wanted more participants, and more hands-on training. Scores on multiple surveys were shown to be improved and sustained, including patient activation (p = 0.0004), self-efficacy (p = 0.006), total HRQOL (p = 0.01), physical well-being (p = 0.005), and social well-being (p = 0.002). Survivor anxiety was significantly reduced by follow-up (p = 0.047). CONCLUSIONS: This self-management ostomy program can help cancer survivors with ostomies adapt to their stoma. Initiating this program in the community setting would be beneficial to many cancer survivors.

Impact of preparing for OSHA local emphasis program inspections of New York dairy farms: Case studies and financial cost analysis.

BACKGROUND: OSHA inspection of dairy farms began in July 1, 2014 in New York State. As of September 2014, a total of eight farms were randomly selected for inspection. This case study addresses how dairy farm managers prepared for these inspections, and identifies farm level costs preparing for inspection and/or being inspected. METHODS: Four farms that were OSHA inspected and 12 farms that were not inspected were included in this mixed method evaluation using a multimodal (telephone, email, or mail) survey. Descriptive analysis was carried out using frequencies, proportions, means, and medians. RESULTS: Overall, the impact of OSHA inspections was positive, leading to improved safety management and physical changes on the farm and worker trainings, although the farmers' perspectives about OSHA inspection were mixed. CONCLUSIONS: The cost of compliance was low relative to estimated overall production costs. Clarifications and engineering solutions for specific dairy farm hazard exposures are needed to facilitate compliance with OSHA regulations.

Colostomy Irrigation: Issues Most Important to Wound, Ostomy and Continence Nurses.

PURPOSE: The purpose of this study was to describe issues that WOC nurses find most important related to colostomy irrigation (CI). DESIGN: This is an additional analysis of a study focusing on qualitative responses to a survey querying WOC nurses about CI practices. SUBJECTS AND SETTING: The target population was members of the Wound, Ostomy and Continence Nurses Society. Of the 985 nurses who responded to the survey, 338 (34.3%) answered the optional open-ended question asking for additional comments. METHODS: A 1-time online survey was conducted. In addition to demographic, educational information, and forced-choice questions about CI, an open-ended question asked for any additional comments about their experience with irrigation and WOC practice. Content analysis was used to identify common themes identified by WOC nurses. RESULTS: Three hundred thirty-eight out of 985 WOC nurses (34.3%) answered the optional open-ended question asking for additional comments; analysis for this study is based on these responses. WOC nurses who responded to the open-ended question had similar characteristics to those who responded to the entire survey but were significantly more experienced (15.1 vs 11.0 years; P < .001). Multiple themes were identified that were related to forced-choice questions in the survey, such as equipment, lack of teaching time, and increased control, while several new themes emerged, including age-related recommendations, economic/ecologic benefits, cultural implications, and misconceptions of CI. CONCLUSION: Many WOC nurses feel that CI is a valued modality of ostomy care and should be reestablished, although dissenting opinions were expressed. Additional research to increase the evidence base for this procedure is needed. New opportunities to educate WOC nurses and other healthcare professionals and teach eligible patients irrigation techniques are recommended.

Colostomy irrigation: current knowledge and practice of WOC nurses.

PURPOSE: This study builds on the authors' previous studies that demonstrate that persons living with a colostomy who practice colostomy irrigation (CI) experience quality-of-life benefits. Studies also reveal that patients may not be taught about CI. The purpose of this study was to determine current knowledge, attitudes, and practices of WOC nurses on CI. SUBJECTS: The target population was ostomy nurses who were members of the Wound, Ostomy and Continence Nurse's Society. Nine hundred eighty-five nurses out of a possible pool of 4191 members responded, providing a response rate of 24%. Their average age was 53 years (range, 25-79 years). Respondents averaged 12 years' experience as a WOC nurse (range, 1-40 years) and 90% (n = 875) were certified. Participants practiced in a variety of settings, including acute and long-term care facilities, home health, and ambulatory clinics. They saw an average of 37 ± 60.5 (mean ± SD) ostomy patients per year (range, 0-1100). METHODS: A 1-time online survey (SurveyMonkey) of members of the Wound, Ostomy and Continence Nurses (WOCN) Society was conducted. In addition to demographic and educational information, questions also included (1) CI advantages and disadvantages; (2) CI content routinely taught; (3) challenges in assisting patients to learn CI; and (4) where preparation was received for teaching this procedure. Nurses were asked whether they believe CI is evidence-based. RESULTS: More than half identified irrigation as an evidence-based practice (59%), but half indicated they do not routinely teach CI. Multiple factors correlated with nurses' decisions to teach CI, including years of experience (P = .03), specific CI education (P < .001), and considering the intervention evidence-based (P < .001). CONCLUSION: Factors influencing CI instruction are multifactorial; they include nurses' attitudes, experience base, education, medical indications, setting characteristics, and patient interest and physical abilities. Education on this procedure is urgently needed for ostomy nurses unprepared and/or unfamiliar with CI, as well as staff nurses in acute care units who could offer accurate information and additional resources to patients to increase their informed decisions.

Self-management goals of cancer survivors with an ostomy.

OBJECTIVES: Ostomies due to cancer surgery impose complex and enduring care challenges that necessitate cancer survivors" self-management. The objective of this analysis is to evaluate ostomates' self- management goals using a qualitative approach. METHODS: A multi-site randomized controlled trial testing the Ostomy Self-Management Training program (OSMT) was delivered via telehealth to a group of cancer survivors with an ostomy randomized to either the OSMT program with goal setting or usual care (UC), without goal setting. Goals were classified by type and frequency according to a modified City of Hope Health-Related Quality of Life framework (physical, psychological, social, spiritual, ostomy-specific, and healthcare quality domains), using a directed and systematic content analysis approach. RESULTS: The 524 self-management goals analyzed by domain frequencies physical (29.4%), ostomy specific (29.0%) and social well-being (25.0%) were predominant. Managing other health issues (7.6%), psychological issues (6.0%), and spiritual well-being issues (3.0%) were next. Common self-management themes were ostomy care independence (87.5%), handling cancer-related issues (62.5%), achieving acceptance (56.2%), resuming physical activity (43.0%), and maintaining fluid/diet balance (43.0%). DISCUSSION/CONCLUSION: Goal-setting offers insights into self-management concerns of cancer survivors with ostomies. Results demonstrate the broad aspects of self-management ostomates face. PRACTICE IMPLICATIONS: Self-management training with patient goal-setting may be used to help ostomates with cancer and their health care providers identify areas for needed education and support.

Stoma location and ostomy-related quality of life among cancer survivors with ostomies: A pooled analysis.

INTRODUCTION: We sought to explore how stoma location may affect self-care events and health-related quality of life (HRQOL) in cancer survivors with ostomies. METHODS: A pooled dataset was obtained from three multi-site studies that used the City of Hope Quality of Life-Ostomy questionnaire. Predicted means for HRQOL and individual items were generated adjusting for sex, ostomy type, and body mass index. RESULTS: Among 607 cancer survivors, abdominal quadrant groups were: 138 (23%) upper left, 298 (49%) lower left, 51 (8%) upper right, and 120 (20%) lower right. Survivors with lower right side ostomies more frequently reported weight gain after ostomy surgery (p < 0.001). Stoma on the right side of the abdomen was associated with lower scores for issues with the skin surrounding the ostomy (p = 0.03) and satisfaction with appearance (p = 0.008). DISCUSSION: Stoma location is associated with HRQOL and difficulties adjusting to the ostomy.

Effectiveness of a combined prenatal and postpartum smoking cessation program.

Women frequently quit smoking during pregnancy but then relapse postpartum. The BABY & ME-Tobacco Free program combines prenatal and postpartum smoking cessation counseling and biomarker feedback with monthly postpartum incentives. The settings included 22 sites (WIC offices and prenatal clinics) in upstate New York. A quasi-experimental design was used to evaluate this intervention, that included four face-to-face prenatal sessions with a counselor who did smoking cessation counseling, carbon monoxide testing and random saliva cotinine testing. For 1 year postpartum, mothers were biochemically tested every 3-4 weeks and, if negative, were issued a voucher for diapers. Three implementation models were studied: multi-tasking counselors at fixed sites (Models 1 and 2) versus itinerant smoking cessation specialists (Model 3). Outcomes included biochemically validated abstinence rates during pregnancy and postpartum. Logistic regression was used to identify predictors of postpartum abstinence and program dropout. Proportional hazards regression was used to compare implementation models. Of the 777 pregnant women who enrolled in the program, 588 were eligible for the postpartum program. The intention to treat pregnancy quit rate was 60%. Postpartum, Model 3 showed consistently better quit outcomes than the other models. Predictors of abstinence at 6 months postpartum are: older age (OR = 1.07, 95% C.I. 1.02-1.12), lower baseline carbon monoxide level (OR = 0.69, 95% C.I. 0.49-0.97), Model 3 (OR = 4.60, 95% C.I. 2.80-7.57) and attending more prenatal sessions (OR = 3.52; 95% C.I. 2.19-5.65). The BABY & ME-Tobacco Free program is an effective smoking cessation program for pregnant and parenting women.

Worry and Wisdom: A Qualitative Study of Transgender Elders' Perspectives on Aging.

Purpose: While lesbian, gay, bisexual, transgender, and queer or questioning (LGBTQ) elders face a multitude of barriers to healthy aging, little is known about needs and concerns specific to transgender elders, except that they face many self-perceived challenges to healthy aging, which exist at the individual, community, and institutional levels. To further understand these needs, we explored the perspectives of transgender individuals aged 65 and older on health care, expectations of aging, concerns for the future, and advice for young transgender people. Methods: We performed 19 semistructured interviews with individuals who identify as transgender elders, 10 transgender women and 9 transgender men. Interviews were transcribed and coded by three investigators to generate salient themes via thematic analysis. Results: We identified 7 major themes that exemplify the concerns and experiences of this sample of the aging transgender community: fear of mistreatment in elder care, isolation and loneliness exacerbated by transgender identity, increased vulnerability to financial stressors, perceived lack of agency, health care system and provider inclusivity, giving back to one's community, and embracing self-truth as a path to fulfillment. Conclusion: While some of these concerns, such as fear of mistreatment, are common among elders, the concerns of transgender elders are heightened due to stigma compounded by being both transgender and elderly. Health care providers, nursing home staff, and social workers must be sensitized to these needs and fears to provide appropriate, affirming, and respectful care and support to transgender elders.

Evaluating the Evolution of Social Networks: A Ten-Year Longitudinal Analysis of an Agricultural, Fishing and Forestry Occupational Health Research Center.

As part of our evaluation of the NIOSH-funded Northeast Center for Occupational Health and Safety: Agriculture, Forestry and Fishing (NEC), we present methodology, findings and the potential implications of a sequential social network analysis (SNA) conducted over ten years. Assessing the effectiveness of the center's scientific projects was our overarching evaluation goal. The evaluation design employed SNA to (a) look at changes to the center's network over time by visualizing relationships between center collaborators annually, (b) document collaborative ties and (c) identify particularly strong or weak areas of the network. Transdisciplinary social network criteria were applied to the SNA to examine the collaboration between center personnel, their partners and the industry groups they serve. SNA participants' perspectives on the utility of the SNA were also summarized to assess their interest in ongoing SNA measures. Annual installments of the SNA (2011-2020) showed an expansion of the network with a 30% increase in membership from baseline, as well as an increase in total relational ties (any type of contact). SNA measures also indicated significant increases in co-publication, cross-sector and transdisciplinary ties. Overall, SNA is an effective tool in visualizing and sustaining an occupational safety and health research and outreach network. Its utility is limited by how ties are characterized, grant cycle timeframes and how SNA metrics relate to productivity.

A pilot study of an online produce market combined with a fruit and vegetable prescription program for rural families.

Despite being surrounded by farms, rural families are often at risk for diet-related diseases because of food disparities. Barriers such as distance and transportation to a full service grocery store, lack of cooking knowledge and skills, and the cost of fresh produce, force families to shop at convenience stores that carry predominantly unhealthy, processed foods. We combined a Fruit and Vegetable Prescription Program (F&VRx) with family cooking/nutrition classes and a pilot online produce shopping to promote lifestyle dietary changes in rural families. In 2 rural upstate New York communities school health staff referred low income families with one or more children at risk for chronic disease related to obesity for this pilot program. Each family was given a weekly online produce credit for 5 months, September/October 2017 through January/February 2018. Two monthly nutrition/cooking lessons were provided for the entire family. Evaluation was done using pre and post program surveys and Photovoice. Families took photos in response to the question "How has the F&VRx program affected my family?". Redemption of online produce credit was 94% and class attendance was 80%. Fruit and vegetable consumption rose for children. Confidence, culinary skills, and food literacy increased slightly. Three months after program completion, 60% of the families continued weekly online produce shopping without the F&VRx. Healthy behaviors for shopping, preparing, and consuming fruits and vegetables can be increased using a F&VRx, online produce ordering, and family cooking classes.

Impact of "Learn the Signs. Act Early." Materials on Parental Engagement and Doctor Interaction Regarding Child Development.

OBJECTIVE: To measure the effectiveness of the "Learn the Signs. Act Early." (LTSAE) educational materials in increasing parent engagement in developmental monitoring during well-child visits. METHODS: Exit surveys and analysis of audio-taped well-child visits were compared pre- versus post-LTSAE exposure. Before the LTSAE, parents were exposed to usual pediatric clinic developmental surveillance practices. After the LTSAE, parents received LTSAE materials before well-child visits, received age-specific LTSAE checklists at the clinic visit, and were exposed to LTSAE posters in examination rooms. Pediatricians attended a didactic session on developmental screening and LTSAE materials. Children evenly distributed among the ages of 2, 4, 6, 9, 12, and 18 months and 2 and 3 years were consecutively recruited at their well-child visits. After the visit, all parents completed exit surveys that assessed 5 a priori outcomes: milestone awareness, level of concern if the child is late in reaching a milestone, likelihood of bringing up a concern to the doctor, level of confidence in knowing what to do if concerned, or talking about child development during the visit. A 25% visit subsample was audio-taped, transcribed, and coded for parental engagement and nurse/doctor response to parental concern. RESULTS: No demographic differences were found between the 181 parents enrolled before the LTSAE and 182 after the LTSAE. LTSAE exposure was significantly higher after the LTSAE (p < 0.0001). After the LTSAE, parent awareness of the number of milestones increased (p = 0.03). Audiotape analysis showed that parents were more engaged in discussions about development post-LTSAE versus pre-LTSAE. CONCLUSION: The LTSAE may improve developmental surveillance by increasing parent's awareness of and discussion about milestones.

Building a Pediatric Patient Registry to Study Health Outcomes Among Transgender and Gender Expansive Youth at a Rural Gender Clinic.

Purpose: Significant knowledge gaps regarding outcomes of gender-affirming therapy in transgender (TG) and gender expansive (GE) youth impede an evidence-based approach to these patients. The Gender Wellness Center (GWC) Pediatric Patient Registry was established in 2017 to enable systematic, longitudinal research to describe the physical, mental, and quality-of-life outcomes of these youth. Methods: All TG/GE youth, ages 8-21 years, presenting to the GWC were recruited on site. Ten research questions guided the creation of data fields. The following 131 variables were abstracted from electronic medical records: demographics, weight, height, body mass index, gender identity, sexual orientation, coexisting diagnoses, substance use, Tanner stage, sexual activity, medications, fertility preservation, Gonadotropin Releasing Hormone (GnRH) analog use, hormone therapy, surgery, and related outcomes. Health-related quality of life is assessed using the Child Health Questionnaire-87 for ages <18 and the Short Form-36 for ages 18-21. Results: To date, 139 TG and GE youth (90% white and 93% non-Hispanic), have enrolled in the registry. Average age at enrollment was 17.5 years (±3.1, range: 8-21). Two-thirds of youth identified on the trans masculine spectrum (n=90), 28.8% identified on the trans feminine spectrum (n=40), and 6.5% identified as nonbinary/gender nonconforming (n=9). Nearly, all youth had socially transitioned (n=121, 87.7%) and were medically transitioning (n=123, 89.1%). Conclusion: As one of the first rural-based registries, the GWC Registry has helped to delineate health outcomes attributable to gender-affirming care in a unique patient population of TG/GE youth. Our results will be used to describe treatment outcomes that will contribute to evidence-based guidelines.

Ostomy telehealth for cancer survivors: Design of the Ostomy Self-management Training (OSMT) randomized trial.

PURPOSE: An ostomy adversely affects health-related quality of life (HRQOL) in a diverse population of cancer survivors and their caregivers. Hit-or-miss ostomy care, nurse counseling, and community referral have been the primary modes of self-management education and support in the peri-operative setting. Few evidence-based, systematic ostomy self-management programs are available to ensure optimal post-operative care. This paper describes the study design of a telehealth-based Ostomy Self-management Training (OSMT) program for cancer survivors and their caregivers. METHODS: The study is a three-year, randomized trial that tests the effectiveness of the OSMT program on survivor activation, self-efficacy, and HRQOL. The intervention integrates goal setting and problem-solving approaches to enhance survivor activation and self-efficacy to carry out ostomy care. The curriculum is delivered via four group sessions administered by trained ostomy certified nurses (WOCNs) and peer ostomates. An additional session is offered to caregivers to address their needs in relation to ostomy care. Telehealth approaches through videoconferencing are used to enhance program delivery to participants in three different geographic areas across two time zones. Participants join sessions via real-time videoconferencing from their homes. CONCLUSIONS: The OSMT program has high potential to make a positive impact on the unique physical, psychological, social, and spiritual needs of cancer survivors living with a permanent ostomy. The study design, process, and telehealth approach contributes to the success of future dissemination efforts of the intervention into diverse clinical and community settings.

Applying the Chronic Care Model to Support Ostomy Self-Management: Implications for Oncology Nursing Practice.

BACKGROUND: Living with an ostomy requires daily site and equipment care, lifestyle changes, emotional management, and social role adjustments. The Chronic Care Ostomy Self-Management Training Program (CCOSMTP) offers an ostomy self-management curriculum, emphasizing problem solving, self-efficacy, cognitive reframing, and goal setting. OBJECTIVES: The qualitative method of content analysis was employed to categorize self-reported goals of ostomates identified during a nurse-led feasibility trial testing the CCOSMTP. METHODS: Thirty-eight ostomates identified goals at three CCOSMTP sessions. The goals were classified according to the City of Hope Health-Related Qualify of Life Model, a validated multidimensional framework, describing physical, psychological, social, and spiritual ostomy-related effects. Nurse experts coded the goals independently and then collaborated to reach 100% consensus on the goals' classification. FINDINGS: A total of 118 goals were identified by 38 participants. Eighty-seven goals were physical, related to the care of the skin, placement of the pouch or bag, and management of leaks; 26 were social goals, which addressed engagement in social or recreational roles and daily activities; and 5 were psychological goals, which were related to confidence and controlling negative thinking. Although the goals of survivors of cancer with an ostomy are variable, physical goals are most common in self-management training.