Post-traumatic reactions and quality of life after pelvic exenteration for gynecologic cancer: a retrospective cohort study.

OBJECTIVE: We examined post-traumatic reactions and quality of life in women with recurrent gynecologic cancer who underwent a pelvic exenteration (PE), a potentially life-saving radical surgery associated with life-altering sequelae. METHODS: Twenty-one women who had completed PE at least 6 months prior completed the Impact of Event Scale-Revised, a measure of post-traumatic stress, the Post-Traumatic Growth Inventory, a measure of post-traumatic growth, the Center for Epidemiologic Studies-Depression Scale, and the European Organization for Research and Treatment of Cancer 30-item core Quality of Life Questionnaire. We examined the associations between these outcome variables, and quality of life scores were compared to normative values for the general and gynecologic cancer populations. RESULTS: Thirty percent of women reported clinically significant post-traumatic stress symptoms and 71% endorsed clinically significant depressive symptoms. More post-traumatic stress was associated with less post-traumatic growth, more depressive symptoms, and worse quality of life. In general, women's quality of life was worse than the general population but comparable to women with stage III-IV ovarian cancer and women with cervical cancer. Social functioning was markedly lower in our sample and women reported more pain, diarrhea, and financial difficulties post-PE compared to published norms for the general population and women with ovarian or cervical cancer. There were no differences in quality of life based on age, type of PE, type of urinary diversion, or cancer type. CONCLUSIONS: Findings support long-term continued symptom management and the ongoing rehabilitation of patients to optimize physical, psychological, and social well-being in PE survivorship.

Vaping behavior among adolescent and young adult cancer survivors: A scoping review.

Adolescent and young adult (AYA) cancer survivors are vulnerable to future health complications and engage in risky health behaviors. Vaping or electronic cigarette use is increasing among AYA, yet little is known about the prevalence in AYA cancer survivors and associated morbidities. The objective of this research was to analyze the current state of the literature on vaping among AYA cancer survivors with scoping review methodology. Eligibility criteria included any vaping among people aged 13-39 years with cancer or a history of cancer. Database searches from PubMed, Web of Science, PsycINFO, and Scopus yielded eight cross-sectional studies. Results suggest significant variability, with studies finding 2%-46% of AYA survivors have ever or currently vape. Medical (e.g., late effects), psychosocial (e.g., depression), and demographic correlates (e.g., younger age, male gender), as well as other risky health behaviors (e.g., cigarette smoking) were shown to be associated with vaping. Though the extant research is beginning the task of understanding comorbidities with vaping, few research has focused on those most vulnerable to vaping (survivors under age 18). More research is required to understand AYA survivors' vaping behavior to better understand the significance and implications regarding the growing incidence of vaping among this vulnerable population.

Mental Distress, Label Avoidance, and Use of a Mental Health Chatbot: Results From a US Survey.

BACKGROUND: For almost two decades, researchers and clinicians have argued that certain aspects of mental health treatment can be removed from clinicians' responsibilities and allocated to technology, preserving valuable clinician time and alleviating the burden on the behavioral health care system. The service delivery tasks that could arguably be allocated to technology without negatively impacting patient outcomes include screening, triage, and referral. OBJECTIVE: We pilot-tested a chatbot for mental health screening and referral to understand the relationship between potential users' demographics and chatbot use; the completion rate of mental health screening when delivered by a chatbot; and the acceptability of a prototype chatbot designed for mental health screening and referral. This chatbot not only screened participants for psychological distress but also referred them to appropriate resources that matched their level of distress and preferences. The goal of this study was to determine whether a mental health screening and referral chatbot would be feasible and acceptable to users. METHODS: We conducted an internet-based survey among a sample of US-based adults. Our survey collected demographic data along with a battery of measures assessing behavioral health and symptoms, stigma (label avoidance and perceived stigma), attitudes toward treatment-seeking, readiness for change, and technology readiness and acceptance. Participants were then offered to engage with our chatbot. Those who engaged with the chatbot completed a mental health screening, received a distress score based on this screening, were referred to resources appropriate for their current level of distress, and were asked to rate the acceptability of the chatbot. RESULTS: We found that mental health screening using a chatbot was feasible, with 168 (75.7%) of our 222 participants completing mental health screening within the chatbot sessions. Various demographic characteristics were associated with a willingness to use the chatbot. The participants who used the chatbot found it to be acceptable. Logistic regression produced a significant model with perceived usefulness and symptoms as significant positive predictors of chatbot use for the overall sample, and label avoidance as the only significant predictor of chatbot use for those currently experiencing distress. CONCLUSIONS: Label avoidance, the desire to avoid mental health services to avoid the stigmatized label of mental illness, is a significant negative predictor of care seeking. Therefore, our finding regarding label avoidance and chatbot use has significant public health implications in terms of facilitating access to mental health resources. Those who are high on label avoidance are not likely to seek care in a community mental health clinic, yet they are likely willing to engage with a mental health chatbot, participate in mental health screening, and receive mental health resources within the chatbot session. Chatbot technology may prove to be a way to engage those in care who have previously avoided treatment due to stigma.

The bodily threat monitoring scale: Development and preliminary validation in adult and childhood cancer survivors.

OBJECTIVE: Bodily threat monitoring is a core clinical feature of Fear of cancer recurrence (FCR) and is targeted in psycho-oncology treatments, yet no comprehensive self-report measure exists. The aim of this study was the theory-informed development and initial validation of the Bodily Threat Monitoring Scale (BTMS). METHODS: Adult survivors of breast and gynaecological cancers (Study 1: N = 306, age = 37-81 years) and childhood cancer survivors (Study 2: N = 126, age = 10-25 years) completed the BTMS, designed to assess how individuals monitor for and interpret uncertain symptoms as indicating that something is wrong with their body. Participants completed measures to assess construct and criterion validity of the BTMS, and childhood cancer survivors (Study 2) completed the BTMS again 2 weeks later to assess test-retest reliability. RESULTS: The 19-item BTMS demonstrated excellent internal consistency across adult and childhood cancer samples (α = 0.90-0.96). Factor analyses indicated two subscales capturing 1. Monitoring of bodily sensations and 2. Threatening interpretations of bodily sensations. Two-week stability estimates were acceptable. For construct validity, the BTMS correlated with body vigilance and anxiety sensitivity. The BTMS also demonstrated criterion validity, yielding significant associations with FCR, intolerance of uncertainty, help-seeking behaviours, and quality of life. The BTMS was associated with FCR while controlling for body vigilance and anxiety sensitivity, indicating a unique contribution of this theory-informed measure. CONCLUSIONS: The BTMS shows evidence of sound psychometric properties and could be used to elucidate the role of bodily threat monitoring in the maintenance and management of FCR.

"You don't accept he's completely ok": a reflexive thematic analysis of parents' roles in monitoring their child's health and symptoms after finishing childhood cancer treatment.

OBJECTIVES/PURPOSE: Childhood cancer survival brings continued mental and physical health challenges both for the child and for the family. In this study, we investigated how parents viewed their roles in their child's health and symptom monitoring during the survivorship period. METHODS: Twenty-one parents of childhood cancer survivors (n = 18 mothers; parent mage = 49.78 years, child mage = 18.50 years; range = 12-25 years), whose children were at least one year off-treatment (m = 3.67 years; SD = 2.25; various diagnoses), completed semi-structured interviews. Interviews were recorded, transcribed, and analyzed using reflexive thematic analysis. RESULTS: Analyses generated three themes which reflect roles that parents may adopt in the context of monitoring symptoms in their childhood cancer survivor. "Vigilant Mama and Papa" (theme 1) described parents who expressed a strong sense of responsibility for protecting their child's health during survivorship resulting in careful monitoring of their child's symptoms and health. "Pragmatic Mamas and Papas" (theme 2) described parents who adopted an approach to symptom and health monitoring that emphasized moving past cancer and focusing on the future. Finally, "Encouraging Mamas and Papas" (theme 3) described parents who focused on educating and preparing their child to develop an autonomous approach to health and symptom self-monitoring as they transitioned to survivorship and adulthood. CONCLUSION: Parents take on varying roles in monitoring their child's symptoms and health after finishing childhood cancer treatment. IMPLICATIONS FOR CANCER SURVIVORS: Understanding the ways in which parents continue to be involved in their child's cancer journey helps researchers develop interventions to support dyadic coping in survivorship.

Novel Application of Dot Survey Methodology at a Youth Health Clinic: A Pilot Study.

PURPOSE: We tested a novel dot survey methodology at our clinic that provides sexual health services to youth ages 13 to 24. We conducted two interactive dot surveys to assess their feasibility and acceptability while gaining insight into patients' attitudes about mental health. METHODS: We adapted a dot survey approach to assess youths' familiarity with mental health and attitudes toward related services. We also assessed their attitudes toward participating in this survey method. All patients with scheduled appointments were eligible to participate. Participants used dot stickers to indicate their responses on survey posters displayed in the waiting room. RESULTS: Three hundred patients participated between June and September 2021 (150 participants/survey). About 95% of participants liked seeing others' responses to the dot surveys, and over 70% reported that the surveys made them think more about mental health. Over 90% would participate in future dot surveys at the clinic. Survey items with the most consensus among participants included that 74.5% "really agree" youth face barriers to accessing mental health services (n = 141, mean = 4.61, standard deviation = 0.79) and 87.1% "really agree" primary care providers should ask youth about their mental health (n = 139, mean = 4.81, standard deviation = 0.59). DISCUSSION: The dot surveys were effective at assessing patients' attitudes about mental health and feasible to conduct in our waiting room. Results confirmed that this survey method was well received among patients. Dot surveys can be adapted by other clinical settings to engage youth regarding their health-related attitudes.

Parental Perspectives on Health Care Transition in Adolescent and Young Adult Survivors of Pediatric Cancer.

The health care transition (HCT) from pediatric to adult care is pivotal for childhood cancer survivors (CCS) and their parents. However, there is little research examining parental needs during HCT, despite this being a key predictor of successful HCT. The goal of this study was to investigate the needs of parents of CCS during HCT. Using an integrative review of the literature structured around the social-ecological model (SEM) of CCS transition readiness yielded 454 articles, including three hand-searched articles. Six articles were included in the final analysis. Data were extracted into nine factors derived from SEM. Articles were published within the last decade, largely qualitative, and mainly examined parents and CCS together. Parents most frequently mentioned relationships with their practitioner and CCS as contributing to HCT readiness, while abstract factors, such as goal-setting and expectations around HCT, were not mentioned. Our results are limited by the dearth of research on this topic, the homogeneity of samples, and joint presentation of CCS and parent data. Nonetheless, our results indicate that parents do not weigh all aspects of SEM equally, with macrolevel barriers, such as sociodemographic factors being viewed as less salient for HCT readiness. Parents mostly focused on interpersonal factors, such as their relationships with practitioners and CCS, indicating that practitioners should emphasize these in preparing parents for HCT.

Development and initial testing of TOGETHER-YA: an eHealth-delivered and group-based psychosocial intervention for young adult cancer survivors.

PURPOSE: This study aimed to (1) develop TOGETHER-YA, an e-Health-delivered and group-based health-related quality of life (HRQOL) intervention for young adult (YA) cancer survivors aged 18-39 (Part 1), and (2) determine its initial feasibility and acceptability in a single-arm pilot trial (Part 2). METHODS: TOGETHER-YA is a manualized, 10-week intervention for YA survivors that includes elements of relaxation training, cognitive-behavioral therapy, and health education. In Part 1, content was adapted from existing evidence-based interventions with feedback from YAs (N = 22) in four iterative focus groups. In Part 2, YA survivors (N = 11) participated in a single-arm pilot trial of TOGETHER-YA. Intervention groups were led by a trained facilitator over videoconference. Primary outcomes were feasibility (i.e., recruitment, session attendance, retention) and acceptability (i.e., participant satisfaction). RESULTS: Focus groups reacted positively to TOGETHER-YA and provided actionable recommendations for enhancing its relevance and acceptability, which were implemented. In initial testing, all feasibility and acceptability benchmarks were met; 58% of eligible YAs were recruited, participants attended M = 6 intervention sessions (SD = 3), and 82% of participants were retained post-intervention. On average, participants "agreed" to "strongly agreed" with positive statements about the weekly sessions and the overall program. CONCLUSION: TOGETHER-YA was developed in collaboration with YA cancer survivors and found to be feasible and acceptable in initial testing. TOGETHER-YA is the first HRQOL intervention for a broad range of YA survivors that is eHealth-delivered for convenience and group-based for peer support. Future large-scale trials should test its efficacy for improving HRQOL. TRIAL REGISTRATION: NCT05048316, September 17, 2021; NCT05054569, September 23, 2021.

Patient-reported outcome measurement implementation in cancer survivors: a systematic review.

PURPOSE: Patient-reported outcome measurements (PROMs) are increasingly used for cancer patients receiving active treatment, but little is known about the implementation and usefulness of PROMs in cancer survivorship care. This systematic review evaluates how cancer survivors and healthcare providers (HCPs) perceive PROM implementation in survivorship care, and how PROM implementation impacts cancer survivors' health outcomes. METHODS: We systematically searched PubMed/MEDLINE, Embase, CINAHL, Web of Science, and Cochrane Database of Systematic Reviews from database inception to February 2022 to identify randomized and nonrandomized studies of PROM implementation in cancer survivors. RESULTS: Based on prespecified eligibility criteria, we included 29 studies that reported on 26 unique PROMs. The studies were heterogeneous in study design, PROM instrument, patient demographics, and outcomes. Several studies found that cancer survivors and HCPs had favorable impressions of the utility of PROMs, and a few studies demonstrated that PROM implementation led to improvements in patient quality of life (QoL), with small to moderate effect sizes. CONCLUSIONS: We found implementation of PROMs in cancer survivorship care improved health outcomes for select patient populations. Future research is needed to assess the real-world utility of PROM integration into clinical workflows and the impact of PROMs on measurable health outcomes. IMPLICATIONS FOR CANCER SURVIVORS: Cancer survivors accepted PROMs. When successfully implemented, PROMs can improve health outcomes after completion of active treatment. We identify multiple avenues to strengthen PROM implementation to support cancer survivors.

Smartphone-based Ecological Momentary Assessment to study "scanxiety" among Adolescent and Young Adult survivors of childhood cancer: A feasibility study.

OBJECTIVE: Scan-related anxiety ("scanxiety") refers to the fear, stress, and anxiety in anticipation of tests and scans in follow-up cancer care. This study assessed the feasibility of Ecological Momentary Assessment (EMA) for real-world, real-time capture of scanxiety using patients' personal smartphone. METHODS: Adolescent and Young Adult survivors of childhood cancer were prompted to complete EMA surveys on a smartphone app three times per day for 11 days (33 surveys total) around their routine surveillance scans. Participants provided structured feedback on the EMA protocol. RESULTS: Thirty out of 46 contacted survivors (65%) enrolled, exceeding the preregistered feasibility cutoff of 55%. The survey completion rate (83%) greatly exceeded the preregistered feasibility cutoff of 65%. Participants generally found the smartphone app easy and enjoyable to use and reported low levels of distress from answering surveys. Participants reported significantly more daily fear of cancer recurrence (FCR) and negative affect in the days before compared to the days after surveillance scans, aligning with the expected trajectory of scanxiety. Participants who reported greater FCR and scanxiety using comprehensive measures at baseline also reported significantly more daily FCR around their surveillance scans, indicating validity of EMA items. Bodily threat monitoring was prospectively and concurrently associated with daily FCR, thus warranting further investigation as a risk factor for scanxiety. CONCLUSIONS: Findings indicate the feasibility, acceptability, and validity of EMA as a research tool to capture the dynamics and potential risk factors for scanxiety.

Chronic Pain in Young Athletes: The Impact of Athletic Identity on Pain-related Distress and Functioning.

BACKGROUND: It is common for youth to engage in sport and unfortunately also common for chronic pain to emerge in childhood. The convergence of chronic pain and sports participation in youth has not been extensively studied. OBJECTIVE: The goal of this study was to examine the association between athletic identity (AI) and pain-related distress and functioning in youth with chronic pain. PARTICIPANTS: Our cohort consisted of 305 youth ages 8 to 21, 83.6% of whom reported being currently engaged or previously involved in sport. Correlation and regression analyses were completed to evaluate the relationship between AI and pain-related distress and functioning in our cohort of chronic pain patients. RESULTS: Children currently involved in sport had higher total AI and social AI, lower fear of pain, and lower functional disability. Greater negative affectivity-AI had the strongest relationship with pain-related distress, including pain catastrophizing, fear and avoidance of pain, and anxiety. Stronger social AI was associated with lower levels of depression and pain-related avoidance of activities. Functional disability was not significantly associated with AI, but was lowest in individuals currently involved in sport. CONCLUSION: Our study provides evidence that focusing on continued sports engagement in the context of chronic pain is associated with less pain-related distress and functional limitations when compared with those who discontinue sports involvement, thus may serve as a buffer in the context of chronic pain. The association of AI with pain-related distress suggests that there is emotional significance in the degree to which youth identify as an athlete. This may be beneficial to clinically assess in youth with chronic pain.

Symptom appraisal in uncertainty: a theory-driven thematic analysis with survivors of childhood cancer.

OBJECTIVE: Somatic symptoms capture attention, demand interpretation, and promote health behaviors. Symptom appraisal is particularly impactful within uncertain health contexts such as cancer survivorship. Yet, little is known about how individuals make sense of somatic symptoms within uncertain health contexts, nor how this process guides health behaviors. DESIGN: 25 adolescent and young adult survivors of childhood cancer completed semi-structured interviews regarding how they appraise and respond to changing somatic sensations within the uncertain context of survivorship. MAIN OUTCOME MEASURES: Interviews were transcribed verbatim and subjected to a hybrid deductive-inductive thematic analysis, guided by the Cancer Threat Interpretation model. RESULTS: We constructed three themes. Symptoms as signals of bodily threat (theme 1) captured that participants described commonly interpreting and worrying about everyday sensations as indicating cancer recurrence or new illness. Playing detective with bodily signals (theme 2) captured participants' felt need to employ cognitive and behavioral strategies to determine whether somatic sensations indicated a credible health threat. These two themes are qualified by the final theme, Living with symptom-related uncertainty (theme 3), which captured participants' recognition that post-cancer symptoms are wily and influenced by psychological factors such as anxiety. CONCLUSIONS: These data highlight that making sense of everday somatic sensations can be particularly challenging following an experience of cancer. There is a need for novel symptom management approaches that target how somatic sensations are appraised and responded to as signals of bodily threat.

Graded exposure treatment for adolescents with chronic pain (GET Living): Protocol for a randomized controlled trial enhanced with single case experimental design.

Chronic musculoskeletal pain in adolescence is a significant public health concern with 3-5% of adolescents suffering from significant pain-related disability. Pain-related fear and avoidance of activities has been found to have a significant influence on pain outcomes in children and adolescents and is a risk factor for less favorable response to treatment. To address this need, we developed graded exposure treatment for youth with chronic pain (GET Living). We describe the rationale, design, and implementation of a two-group randomized controlled trial (RCT) enhanced with single-case experimental design (SCED) methodology with a sample of 74 adolescents with chronic musculosketal pain and their parent caregivers. GET Living includes education, behavioral exposures, and parent intervention jointly delivered by pain psychology and physical therapy providers. The multidisciplinary pain management control group includes pain psychology delivered education and pain self-management skills training (e.g., relaxation, cognitive skills) and separate physical therapy. Assessments include brief daily diaries (baseline to discharge, 7-days at 3-month and 6-month follow-up), comprehensive in-person evaluations at baseline and discharge, and questionnaire across all time points (baseline, discharge, 3-month and 6-month follow-up). Primary outcome is pain-related fear avoidance. Secondary outcome is functional disability. We also outline all additional outcomes, exploratory outcomes, covariates, and implementation measures. The objective is to offer a mechanism-based, targeted intervention to youth with musculoskeletal pain to enhance likelihood of return to function.