Relationships Among Determinants of Health, Cancer Screening Participation, and Sexual Minority Identity: A Systematic Review.

Purpose: To address cancer screening disparities and reduce cancer risk among sexual minority (SM) groups, this review identifies individual, interpersonal, and community/societal determinants of cancer screening (non)participation among differing SM identities. Methods: Seven scientific databases were searched. Inclusion criteria were as follows: (1) used quantitative methods; (2) English language; (3) cancer screening focus; and (4) at least one SM group identified. Articles were excluded if: (1) analysis was not disaggregated by SM identity (n = 29) and (2) quantitative analysis excluded determinants of cancer screening (n = 19). The Sexual and Gender Minority Health Disparities Research Framework guided literature synthesis. Results: Twelve studies addressed cervical (n = 4), breast (n = 3), breast/cervical (n = 3), or multiple cancers (n = 2). Other cancers were excluded due to inclusion/exclusion criteria. The total sample was 20,622 (mean 1525), including lesbian (n = 13,409), bisexual (n = 4442), gay (n = 1386), mostly heterosexual (n = 1302), and queer (n = 83) identities. Studies analyzing individual-level determinants (n = 8) found that socioeconomic status affected cervical, but not breast, cancer screening among lesbian and bisexual participants (n = 2). At the interpersonal level (n = 7), provider-patient relationship was a determinant of cervical cancer screening among lesbian participants (n = 4); a relationship not studied for other groups. Studies analyzing community/societal determinants (n = 5) found that rurality potentially affected cervical cancer screening among lesbian, but not bisexual people (n = 3). Conclusions: This review identified socioeconomic status, provider-patient relationship, and rurality as determinants affecting cancer screening among SM people. While literature addresses diverse SM groups, inclusion/exclusion criteria identified studies addressing cisgender women. Addressing disparities in the identified determinants of cervical cancer screening may improve participation among SM women. Further research is needed to understand determinants of cancer screening unique to other SM groups.

Thresholds in PROMIS Scores Anchored to Subsequent Unscheduled Health Service Use Among People Diagnosed With Cancer.

PURPOSE: To establish thresholds in the Patient-Reported Outcomes Measurement Information System (PROMIS) pain interference, physical function, fatigue, and depression scores on the basis of their association with subsequent use of the emergency department (ED) or urgent care by people diagnosed with cancer. METHODS: Retrospective data from 952 people seen at Henry Ford Cancer and insured through the Health Alliance Plan were analyzed using generalized linear mixed-effects models. The log odds of ED or urgent care use during 14 or 30 days after each patient-reported outcome (PRO) assessment were related to PRO scores, while adjusting for comorbidity, sociodemographic, and tumor characteristics. RESULTS: Pain interference and physical function were associated with subsequent ED or urgent care visits, but fatigue and depression were not, and the results for 14- and 30-day visits were similar. Thresholds anchored in the likelihood of these visits differed according to cancer stage. For people with advanced cancer, a pain interference score of 60 or higher (odds ratio [OR] 3.75, [95% CI, 1.53 to 7.87]) and a physical function score lower than 40 (OR 2.94, [95% CI, 1.22 to 7.06]) produced the largest ORs with narrowest CIs for 30-day visits. For people with nonadvanced cancer, the thresholds of 65 for pain interference (OR 2.64, [95% CI, 1.40 to 5.01]) and 35 for physical function (OR 1.87, [95% CI, 1.01 to 3.45]) produced largest ORs with narrowest CIs for 30-day visits. CONCLUSION: These anchor-based thresholds in PROMIS scores can inform clinicians' actions with the goal of preventing ED or urgent care visits.

Associations between hair cortisol and blood pressure: a systematic review and meta-analysis.

OBJECTIVE: Stress is widely considered to be a risk factor for high blood pressure (BP), but evidence on the associations between biomarkers of chronic stress and BP is inconsistent. This systematic review and meta-analysis assessed the current state of the science on relationships between measures of cortisol concentration reflecting chronic stress exposure [hair cortisol concentration (HCC), nail cortisol concentration)] and BP. METHODS: PubMed, Cumulative Index to Nursing and Allied Health Literature, Web of Science, Cochrane Library, and Embase were searched. Random effects models were used to assess the pooled effect size. Exploratory moderation analysis was performed. RESULTS: Out of 34 014 identified, 16 articles met eligibility criteria and were included in the review, while 14 were included in the meta-analysis. No articles were reported on the association between nail cortisol concentration and BP. Small, positive associations were observed between HCC and SBP [ r  = 0.19 (95% confidence interval (CI): 0.08-0.29)] and HCC and DBP [ r  = 0.13 (95% CI: 0.04-0.22)]. Cortisol analysis method was identified as a significant moderator of the association between HCC and DBP. HCC was largely, positively associated with hypertension status [odds ratio = 3.23 (95% CI: 2.55-4.09), P  < 0.001]. CONCLUSIONS: Current evidence suggests that higher HCC may be associated with elevated BP and a potential risk factor for hypertension. However, results should be interpreted with caution because HCC can be affected by hair color, hair care products, and analytic methods. Given the limitations of studies included in this review, further research is needed.

Management of Anxiety and Depression in Adult Survivors of Cancer: ASCO Guideline Update.

PURPOSE: To update the American Society of Clinical Oncology guideline on the management of anxiety and depression in adult cancer survivors. METHODS: A multidisciplinary expert panel convened to update the guideline. A systematic review of evidence published from 2013-2021 was conducted. RESULTS: The evidence base consisted of 17 systematic reviews ± meta analyses (nine for psychosocial interventions, four for physical exercise, three for mindfulness-based stress reduction [MBSR], and one for pharmacologic interventions), and an additional 44 randomized controlled trials. Psychological, educational, and psychosocial interventions led to improvements in depression and anxiety. Evidence for pharmacologic management of depression and anxiety in cancer survivors was inconsistent. The lack of inclusion of survivors from minoritized groups was noted and identified as an important consideration to provide high-quality care for ethnic minority populations. RECOMMENDATIONS: It is recommended to use a stepped-care model, that is, provide the most effective and least resource-intensive intervention based on symptom severity. All oncology patients should be offered education regarding depression and anxiety. For patients with moderate symptoms of depression, clinicians should offer cognitive behavior therapy (CBT), behavioral activation (BA), MBSR, structured physical activity, or empirically supported psychosocial interventions. For patients with moderate symptoms of anxiety, clinicians should offer CBT, BA, structured physical activity, acceptance and commitment therapy, or psychosocial interventions. For patients with severe symptoms of depression or anxiety, clinicians should offer cognitive therapy, BA, CBT, MBSR, or interpersonal therapy. Treating clinicians may offer a pharmacologic regimen for depression or anxiety for patients who do not have access to first-line treatment, prefer pharmacotherapy, have previously responded well to pharmacotherapy, or have not improved following first-line psychological or behavioral management.Additional information is available at www.asco.org/survivorship-guidelines.

Patient Reported Outcomes and Unscheduled Health Services use During Oral Anti-Cancer Treatment.

CONTEXT: People on oral anti-cancer agents must self-manage their symptoms with less interaction with oncology providers compared to infusion treatments. Symptoms and physical function are key patient-reported outcomes (PROs) and may lead to unscheduled health services uses (urgent care and emergency department [ED] visits, hospitalizations), which in turn lead to increased health care costs. OBJECTIVES: To evaluate the prediction of unscheduled health services uses using age, sex, and comorbidity, then determine the extent to which PRO data (symptoms and functioning) improve that prediction. METHODS: This post-hoc exploratory analysis was based on data from the control group of a trial of medication adherence reminder and symptom self-management intervention for people starting a new oral anti-cancer agent (n = 117 analyzed). Severity and interference with daily life for 18 symptoms, physical function, and depressive symptoms were assessed at intake (oral agent start), and four, eight, and 12 weeks later. Unscheduled health services use during three four-week periods after the start of oral agents was analyzed using generalized mixed effects models in relation to age, sex, comorbidity, and PROs at the beginning of each time period. RESULTS: The summed severity index of 18 symptoms and physical function were significant predictors of hospitalizations in the four weeks following PRO assessment. The addition of PROs improved areas under the receiver operating characteristic curves to be over .70 in most time periods. CONCLUSION: Monitoring of PROs has the potential of reducing unscheduled health services use if supportive care interventions are deployed based on their levels.

Effects of a Web-Based Pediatric Oncology Legacy Intervention on the Coping of Children With Cancer.

BACKGROUND: Recurrent or refractory cancer often results in substantial and extensive physical, emotional, psychosocial, and spiritual burdens for children and their families. However, the therapeutic benefits of legacy interventions in children with recurrent or refractory cancer have been examined only recently, with limited attention to specific effects on children's coping abilities. OBJECTIVE: The purpose of this study was to determine the effects of a digital storytelling-legacy intervention on the adaptive coping of children with recurrent or refractory cancer. METHODS: This study used a 2-arm randomized, waitlist-controlled trial design. A total of 150 children with recurrent or refractory cancer and their parents were recruited via Facebook advertisements. RESULTS: The analysis sample included 92 dyads (35-intervention group, 57-control group). The legacy intervention showed small and statistically nonsignificant effects on primary-control and disengagement coping strategies among children with recurrent or refractory cancer. CONCLUSIONS: Legacy interventions using readily accessible digital storytelling have the potential to enhance the adaptive coping skills among children with recurrent or refractory cancer. Further research should determine how to enhance interventions tailored to this population to optimize the benefits.

Effect of Electronic Symptom Monitoring on Patient-Reported Outcomes Among Patients With Metastatic Cancer: A Randomized Clinical Trial.

Importance: Electronic systems that facilitate patient-reported outcome (PRO) surveys for patients with cancer may detect symptoms early and prompt clinicians to intervene. Objective: To evaluate whether electronic symptom monitoring during cancer treatment confers benefits on quality-of-life outcomes. Design, Setting, and Participants: Report of secondary outcomes from the PRO-TECT (Alliance AFT-39) cluster randomized trial in 52 US community oncology practices randomized to electronic symptom monitoring with PRO surveys or usual care. Between October 2017 and March 2020, 1191 adults being treated for metastatic cancer were enrolled, with last follow-up on May 17, 2021. Interventions: In the PRO group, participants (n = 593) were asked to complete weekly surveys via an internet-based or automated telephone system for up to 1 year. Severe or worsening symptoms triggered care team alerts. The control group (n = 598) received usual care. Main Outcomes and Measures: The 3 prespecified secondary outcomes were physical function, symptom control, and health-related quality of life (HRQOL) at 3 months, measured by the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire (QLQ-C30; range, 0-100 points; minimum clinically important difference [MCID], 2-7 for physical function; no MCID defined for symptom control or HRQOL). Results on the primary outcome, overall survival, are not yet available. Results: Among 52 practices, 1191 patients were included (mean age, 62.2 years; 694 [58.3%] women); 1066 (89.5%) completed 3-month follow-up. Compared with usual care, mean changes on the QLQ-C30 from baseline to 3 months were significantly improved in the PRO group for physical function (PRO, from 74.27 to 75.81 points; control, from 73.54 to 72.61 points; mean difference, 2.47 [95% CI, 0.41-4.53]; P = .02), symptom control (PRO, from 77.67 to 80.03 points; control, from 76.75 to 76.55 points; mean difference, 2.56 [95% CI, 0.95-4.17]; P = .002), and HRQOL (PRO, from 78.11 to 80.03 points; control, from 77.00 to 76.50 points; mean difference, 2.43 [95% CI, 0.90-3.96]; P = .002). Patients in the PRO group had significantly greater odds of experiencing clinically meaningful benefits vs usual care for physical function (7.7% more with improvements of ≥5 points and 6.1% fewer with worsening of ≥5 points; odds ratio [OR], 1.35 [95% CI, 1.08-1.70]; P = .009), symptom control (8.6% and 7.5%, respectively; OR, 1.50 [95% CI, 1.15-1.95]; P = .003), and HRQOL (8.5% and 4.9%, respectively; OR, 1.41 [95% CI, 1.10-1.81]; P = .006). Conclusions and Relevance: In this report of secondary outcomes from a randomized clinical trial of adults receiving cancer treatment, use of weekly electronic PRO surveys to monitor symptoms, compared with usual care, resulted in statistically significant improvements in physical function, symptom control, and HRQOL at 3 months, with mean improvements of approximately 2.5 points on a 0- to 100-point scale. These findings should be interpreted provisionally pending results of the primary outcome of overall survival. Trial Registration: ClinicalTrials.gov Identifier: NCT03249090.

Associations of self-efficacy, social support and coping strategies with health-related quality of life after radical cystectomy for bladder cancer: A cross-sectional study.

OBJECTIVES: Investigating associations between self-efficacy, social support and quality of life (HRQoL) and mediating effects of coping among bladder cancer (BC) patients treated with radical cystectomy (RC). METHODS: A cross-sectional study was conducted from January 2012 to December 2014 with 99 BC patients. An online survey assessed patient characteristics, HRQoL, coping strategies, self-efficacy and social support. A stepwise multiple linear regression model was used. RESULTS: Self-efficacy and social support were significantly associated with HRQoL. Complete mediation effects of adaptive/maladaptive coping strategies emerged for the associations between self-efficacy and social support with functional well-being (B = 0.247, 95% CI 0.119-0.374, p < 0.001; B = -0.414, 95% CI -0.526 to -0.302, p < 0.001) and total Functional Assessment of Cancer Therapy-Bladder (FACT-BI) (B = 0.779, 95% CI 0.351-1.207, p < 0.001; B = -1.969, 95% CI -2.344 to -1.594, p < 0.001). Maladaptive coping mediated the associations of self-efficacy and social support with physical well-being (B = -0.667, 95% CI -0.752 to -0.516, p < 0.001) and disease-specific symptoms (B = -0.413, 95% CI -0.521 to -0.304, p < 0.001). A partial mediation effect of adaptive coping was found for the association between self-efficacy and social well-being (B = 0.145, 95% CI 0.016-0.273, p < 0.05). Social support was significantly associated with emotional (B = 0.067, 95% CI 0.027-0.108, p < 0.001) and social well-being (B = 0.200, 95% CI 0.146-0.255, p < 0.001). CONCLUSION: Interventions should tackle self-efficacy, social support and coping strategies to improve BC patients' HRQoL.

The Added Value of Family Caregivers' Level of Mastery in Predicting Survival of Glioblastoma Patients: A Validation Study.

BACKGROUND: Glioblastoma multiforme (GBM) is an aggressive brain tumor. Patients commonly rely on family caregivers for physical and emotional support. We previously demonstrated that caregiver mastery measured shortly after diagnosis was predictive of GBM patient survival, corrected for known predictors of survival (n = 88). OBJECTIVE: The aims of this study were to verify the contribution of caregiver mastery and investigate the added value of mastery over other predictors to predict 15-month survival. METHODS: Data collected for a longitudinal study (NCT02058745) were used. Multivariable Cox regression analyses were performed for models with known clinical predictors (patient age, Karnofsky Performance Status, type of surgery, O6-methylguanine-DNA-methyltransferase promotor methylation status), with and without adding caregiver mastery to predict mortality. The added value of each model in discriminating between patients with the lowest and highest chances of survival at 15 months was investigated through Harrell's concordance index. RESULTS: In total, 41 caregiver-patient dyads were included. When evaluating solely clinical predictors, Karnofsky Performance Status and patient age were significant predictors of mortality (hazard ratio [HR], 0.974; 95% confidence interval [CI], 0.949-1.000; and HR, 1.045; 95% CI, 1.002-1.091, respectively). Adding caregiver mastery, these clinical predictors remained statistically significant, and mastery showed an HR of 0.843 (95% CI, 0.755-0.940). The discriminative value improved from C = 0.641 (model with known clinical predictors) to C = 0.778 (model with mastery), indicating the latter is superior. CONCLUSIONS: We confirm that caregiver mastery is associated with GBM patient survival. IMPLICATIONS FOR PRACTICE: Incorporating support and guidance for caregivers into standard care could lead to benefits for caregiver well-being and patient outcomes.

Factors affecting medication beliefs among patients newly prescribed oral oncolytic agents.

BACKGROUND: Prescribing oral oncolytic agents (OAs) for advanced cancers is increasing. AIMS: To explore changes in medication beliefs and the effects of symptom severity, cognitive effectiveness and depressive symptoms on medication beliefs over 12 weeks. METHODS: Secondary analysis of a randomized controlled trial, testing an intervention to promote symptom management and adherence [N = 230]. Questionnaires evaluated medication beliefs, symptom severity, depressive symptoms, and cognitive effectiveness. Linear mixed effects models were used for analyses. RESULTS: OA Necessity beliefs increased over time (mean difference 0.0112, SE = 0.055, p 0.04). Concern beliefs did not change and were lower for advanced cancers (-0.193, SE = 0.067, p < 0.01).Depressive symptoms were related to decreased Necessity beliefs (-0.012, SE = 0.005, p = 0.02), but not Concern beliefs. Medication beliefs were not associated with symptom severity or cognitive effectiveness. CONCLUSION: Patients with advanced cancer hold different medication beliefs compared to earlier staged cancers, lending insight into potential outcomes beyond adherence.

Improved Parent-Child Communication following a RCT Evaluating a Legacy Intervention for Children with Advanced Cancer.

Although legacy-building is a priority for quality palliative care, research has rarely examined effects of legacy interventions in children, particularly their impact on parent-child communication.We examined the impact of a web-based legacy intervention on parent-child communication. We hypothesized that compared to usual care, legacy-making would improve quality of parent-child communication.Between 2015 and 2018, Facebook advertisements were used to recruit families of children (ages 7-17) with relapsed/refractory cancer. Parent-child dyads were randomly assigned to the intervention or usual care group. The intervention website guided children to create digital storyboards over 2 weeks by directing them to answer legacy questions about themselves and upload photographs, videos, and music. Families received a copy of the child's final digital story. Children and parents completed the Parent-Adolescent Communication Scale pre- (T1) and post-intervention (T2). Linear regressions tested for differences in change from T1 to T2 between the groups controlling for T1 values using an alpha of p < .05. Intervention effects were measured using Cohen's d. Ninety-seven parent-child dyads were included for analysis. Changes in parent-child communication were not statistically significantly different between the groups, yet meaningful intervention effects were observed. The strongest effects were observed for improving father-child communication (Cohen's d = -0.22-0.33). Legacy-making shows promise to facilitate improved parent-child communication, particularly for fathers. Future studies should include fathers and measure expression of feelings and parent-child interaction. Providers should continue to facilitate family communication for children with advanced disease and realize that legacy interventions may impact mother-child versus father-child communication differently.

Effects of a Web-Based Pediatric Oncology Legacy Intervention on Parental Coping.

OBJECTIVES: To examine the effects of a legacy intervention for children with advanced cancer and their parents on parental coping strategies. SAMPLE & SETTING: The authors recruited 150 children with advanced cancer and their parents via Facebook. METHODS & VARIABLES: Child-parent dyads were randomly assigned to the intervention or usual care. Children in the intervention group created electronic digital storyboards to assist in documenting their legacies. Parents completed the Responses to Stress Questionnaire at baseline/preintervention (T1) and postintervention (T2). Linear regressions were used to test for differences between the groups in the amount of change from T1 to T2 for each parent coping score. RESULTS: Although not statistically significant, the legacy intervention showed trends toward increasing use of primary control and disengagement coping strategies in parents over time relative to usual care. IMPLICATIONS FOR NURSING: Nurses can help to facilitate opportunities for parents to use adaptive coping strategies. More work is needed to determine how legacy interventions in pediatric oncology can facilitate adaptive coping strategies for parents of children with cancer.

Dealing With the Unthinkable: Bladder and Colorectal Cancer Patients' and Informal Caregivers' Unmet Needs and Challenges in Life After Ostomies.

OBJECTIVES: We examined patient and informal caregiver unmet needs to identify areas for targeted supportive care interventions and programs to enhance both patient and informal caregiver experience. DATA SOURCES: A total of 30 patients who underwent ostomy surgeries for bladder or colorectal cancers and 13 informal caregivers participated in the study. Patients were enrolled at the Icahn School of Medicine at Mount Sinai between 2017 and 2018. Qualitative data were collected by individual interviews, audiotaped, and transcribed verbatim. Transcribed data were iteratively analyzed using Atlas.ti to explore patient and caregiver unmet needs. RESULTS: Patients and informal caregivers reported having insufficient psychological preparation for ostomy surgeries, and very limited hands-on training on stoma care and utility of stomal appliances. Unmet psychological needs related to depression, anxiety, and distress caused by changes in body image and sexual, urinary, and bowel function were reported. Patients and caregivers also reported significant patient medical needs in the acute postoperative period including pain, fatigue, sleep disturbance, inflammation, and complications resulting in hospital readmissions. Colorectal cancer patients specifically experienced significant challenges with changes in diet and nutrition that contributed to ostomy care burden. Both patients and caregivers recommended seeking psychological and social support to enhance both patient and caregiver emotional adjustment to life after ostomies. CONCLUSION: Meeting patient and informal caregiver unmet informational and supportive care needs is imperative to improve their quality of life and adjustment. IMPLICATIONS FOR NURSING PRACTICE: An effective supportive care plan should be designed and utilized in clinical care to improve ostomy patients' and caregivers' outcomes.

Validity and Reliability of the 8-Item Inventory of Dimensions of Emerging Adulthood in a Sample of Inflammatory Bowel Disease Patients.

BACKGROUND AND PURPOSE: The purpose was to examine the 8-item Inventory of Dimensions of Emerging Adulthood (IDEA-8) among 61 emerging adults (ages 18-29) with the chronic condition of inflammatory bowel disease (IBD). METHODS: An online continence sample of participants' ages 18-29 years with a self-reported diagnosis of IBD completed a questionnaire including IDEA-8, demographic, and clinical characteristics. RESULTS: The exploratory factor analysis identified a three-factor structure. The three subscales had acceptable internal consistency (α = .74-.86). Two factors (identity exploration/feeling in-between and instability) were associated with demographics. The factors were not associated with clinical characteristics. CONCLUSIONS: Developmental features of emerging adults, as measured by the IDEA-8 for those with IBD, may retain conceptual consistency with healthy adults, but demonstrate a restructuring in factor analysis.

Factors Influencing Received Social Support Among Emerging Adults With Inflammatory Bowel Disease: A Cross-Sectional Study.

The majority of research among individuals with inflammatory bowel disease (IBD) focuses on perceived social support. A gap exists regarding the role of received social support in self-management enhancement. The purpose of this study was to examine specific contextual factors (individual, condition-specific, and emerging adulthood factors) that influence received social support (total, informational, emotional, and tangible) among emerging adults (ages 18-29 years) with IBD. A convenience sample of 61 emerging adults with a diagnosis of IBD was obtained. An association was found between high total received social support and several individual factors such as being closer to the younger end of the age range (ages 18-29 years), married, and fully employed. When controlling for time since diagnosis and symptom interference, high tangible received social support was associated with the use of immunomodulator and biological medications. Emerging adulthood factors were not associated with total or any types of received social support. Future research could examine differences between types of social support and self-management behaviors. These findings contribute a new direction for intervention development with a focus on individual and condition-specific factors to enhance received social support and ultimately health outcomes for individuals with IBD.

Satisfaction With an Interactive Voice Response System and Symptom Management Toolkit Intervention to Improve Adherence in Patients Prescribed an Oral Anticancer Agent.

OBJECTIVES: To describe patient satisfaction with an interactive voice response (IVR) system to assess adherence and symptom management in patients newly prescribed an oral anticancer agent (OAA). SAMPLE & SETTING: Patients prescribed a new OAA were recruited from six comprehensive cancer centers in the United States. METHODS & VARIABLES: Cross-sectional analysis and descriptive statistics were used to summarize patient demographics and satisfaction with the IVR system and symptom management toolkit. RESULTS: Participants had a mean age of 61.82 years, and gastrointestinal cancer was most prevalent. Participants were either "very" or "highly" satisfied with the IVR weekly calling system to assess symptoms, the IVR system daily OAA adherence reminders, and the symptom management toolkit. IMPLICATIONS FOR NURSING: Nurses often triage patient-reported issues with OAAs. Nurses are well positioned to lead IVR system symptom management interventions and to be actively involved in the development, implementation, and dissemination of IVR technologies through research and practice.

Patient Engagement With an Automated Telephone Symptom Management Intervention: Predictors and Outcomes.

BACKGROUND: Self-management of symptoms related to cancer and its treatment is important for maintaining treatment regimens and improving outcomes. PURPOSE: To determine factors associated with engagement in a symptom self-management intervention among patients initiating oral anticancer treatment. METHODS: This secondary analysis included 127 patients randomized to the medication adherence reminder and symptom management intervention in a recently completed trial. Patients were recruited from six Comprehensive Cancer Centers, interviewed at intake, and mailed a Symptom Management Toolkit (Toolkit) with self-care management strategies for 18 symptoms. During eight automated telephone weekly calls, patients were asked to use the Toolkit to manage elevated symptoms. Toolkit use and symptoms were tracked weekly, and generalized linear mixed-effects models were used to determine factors predictive of Toolkit use. General linear modeling was used to relate the Toolkit use during intervention to postintervention symptom severity. RESULTS: Better cognitive function at intake into the trial and higher symptom burden were predictive of the patients' initial decision to try the Toolkit during Week 1. In subsequent weeks, Toolkit use in the previous week and worsening of symptoms were associated with greater odds of Toolkit use. The extent of Toolkit use modified the relationship between intake and 8 week symptom severity: among patients with higher levels of severity at intake, use of the Toolkit conferred greater benefit at 8 weeks. CONCLUSIONS: Patients make realistic decisions regarding when to use a self-directed approach to self-management and are likely to use strategies when their symptoms are higher and to forego use once symptoms subside. CLINICAL TRIAL REGISTRATION: NCT02043184.

How adverse events and permanent medication stoppages affect changes in patients' beliefs about oral antineoplastic agents.

BACKGROUND: Patients with advanced cancer often experience adverse events related to oral antineoplastic agents (OAAs) and permanent OAA medication stoppages, yet it is unknown how these factors impact medication beliefs. Such beliefs about OAA therapy may lend insight into decisions about continued cancer treatment near the end of life. PURPOSE: To explore relationships that adverse events and permanent OAA stoppages have on medication beliefs during the first 12 weeks following new OAA initiation. DESIGN: A secondary data analysis from a National Cancer Institute-funded randomized controlled trial testing an intervention to promote symptom management and OAA adherence. SETTING/SUBJECTS: Patients ≥ 21 years of age initiating a new course of OAA medication were recruited from six United States Comprehensive Cancer Centers. This analysis was based on a subset of patients with advanced disease (N = 60). MEASUREMENTS: Beliefs about Medicine Questionnaire, Common Terminology Criteria for Adverse Events, and medical records of permanent OAA stoppages. RESULTS: Significant decline in beliefs regarding the necessity of OAA medications existed between patients experiencing three or more adverse events and those experiencing a permanent OAA stoppage. CONCLUSIONS: Beliefs about the necessity of OAA medication change when physicians stop OAA medication or the patient experiences three or more adverse events. Concern regarding OAA medication did not change in response to medication stoppage or adverse events for this sample. Perhaps, patients with advanced cancers may be more accepting of adverse events that occur along the treatment trajectory and are not concerned about OAA medication once it is stopped. Findings suggest the importance of physicians' discussions of adverse events and decisions to permanently stop OAA medication as a means of transitioning to a new phase of cancer care that may include palliative or hospice considerations, given that beliefs about medication necessity are changing during these threats to cancer treatment.

Symptoms among emerging adults with inflammatory bowel disease: a descriptive study.

Individuals with inflammatory bowel disease (IBD) are commonly diagnosed when they are between the ages of 18-29, a developmental period known as emerging adulthood. Typically, emerging adults are subsumed into the category of adults even though emerging adults have unique developmental needs. In this descriptive study of IBD in emerging adults, the aims were to (a) determine the prevalence of symptoms; (b) describe the severity of symptoms and their interference with daily activities; and (c) examine the association between individual symptom severity and presence of fatigue. Emerging adults with IBD were recruited using web-based convenience sampling. Sixty-one individuals met the inclusion criteria. They had a mean age of 24.7 and a disease duration of 6.4 years. The most prevalent symptoms reported were: fatigue (n = 44, 72.1%), abdominal cramps (n = 39, 63.9%), abdominal pain (n = 39, 63.9%), and diarrhea (n = 38, 62.3%). The symptom with the greatest severity and interference with daily activities was fatigue. Abdominal cramps, abdominal pain, diarrhea, passing gas, and abdominal tenderness were associated with fatigue when controlling for age, emerging adulthood, gender, time since diagnosis, and current steroid use. Among emerging adults with IBD, fatigue is the most prevalent symptom and is the symptom with the greatest severity and interference with daily activities. These results suggest a need for interventions aimed at reducing both fatigue and gastrointestinal symptoms among emerging adults with IBD.

Transforming a Face-to-Face Legacy Intervention to a Web-Based Legacy Intervention for Children With Advanced Cancer.

Research is needed to examine new and innovative web-based intervention delivery methods that are feasible, cost-effective, and acceptable to children and their families to increase access to palliative care services in the home and community. Our previous work included the development of a legacy intervention using face-to-face digital storytelling for children with cancer that showed feasibility and strong promise to improve child outcomes. However, face-to-face intervention delivery techniques limited our recruitment, thus decreasing sample size and potential access to broader populations. Here we present the systematic steps of the development of a web-based legacy intervention for children (7-17 years of age) with relapsed or refractory cancer and their parent caregivers. Counts and frequencies for parent (n = 81) reports on satisfaction surveys are presented and parent suggestions for future work. Results suggest the web-based legacy intervention is feasible and acceptable, with parent-perceived beneficial outcomes for the child, parent, and family. Results provide a foundation for web-based intervention development in palliative care and the implementation of a theoretically grounded intervention to reduce suffering of seriously ill children and their family members, thereby advancing the science of symptom management in vulnerable palliative care populations.