Factors influencing risk-based care of the childhood cancer survivor in the 21st century.

The population of adult survivors of childhood cancer continues to grow as survival rates improve. Although it is well established that these survivors experience various complications and comorbidities related to their malignancy and treatment, this risk is modified by many factors that are not directly linked to their cancer history. Research evaluating the influence of patient-specific demographic and genetic factors, premorbid and comorbid conditions, health behaviors, and aging has identified additional risk factors that influence cancer treatment-related toxicity and possible targets for intervention in this population. Furthermore, although current long-term follow-up guidelines comprehensively address specific therapy-related risks and provide screening recommendations, the risk profile of the population continues to evolve with ongoing modification of treatment strategies and the emergence of novel therapeutics. To address the multifactorial modifiers of cancer treatment-related health risk and evolving treatment approaches, a patient-centered and risk-adapted approach to care that often requires a multidisciplinary team approach, including medical and behavioral providers, is necessary for this population. CA Cancer J Clin 2018;68:133-152. © 2018 American Cancer Society.

Optimism, pessimism, and physical health among youth: a scoping review.

OBJECTIVE: High levels of optimism (and low levels of pessimism) are associated with improved physical health in adults. However, relatively less is known about these relations in youth. The present study aimed to review the literature investigating optimism, pessimism, and physical health in children and adolescents from populations with and without health conditions. METHODS: We conducted a scoping review up until February 2024. Studies were included if they sampled youth (average age ≤18 years) and treated optimism or pessimism as predictors of health behaviors or outcomes. Data on study and sample characteristics, health outcome, optimism construct, and findings were extracted from eligible papers and results were synthesized. RESULTS: Sixty studies were retained. Most studies were conducted in North America, with adolescents, and used cross-sectional designs and self-reported measures of health. Measures of optimism and pessimism differed across studies. Roughly one-third of studies sampled medical populations. Health categories included substance use, diet and physical activity, sexual health practices, medical adherence, other health behaviors, cardiometabolic health, subjective health/health-related quality of life, pain, sleep, and oral health. Generally, we observed adaptive associations between optimism and health. Higher optimism and lower pessimism were most consistently associated with lower rates of substance use and lower cardiometabolic risk. CONCLUSIONS: The presence of optimism or the absence of pessimism appears to be associated with various adaptive health outcomes among youth with and without health conditions. Developmental, methodological, and clinical considerations for future research are discussed, such as conducting longitudinal studies with objective measures of health and psychometrically validated instruments.

Health behavior profiles in young survivors of childhood cancer: Findings from the St. Jude Lifetime Cohort Study.

BACKGROUND: There is limited understanding of associations between a combination of health behaviors (physical activity, sedentary/screen-time, diet) and cardiometabolic health risk factors, physical performance, and emotional health among young (<18) childhood cancer survivors (CCS). The aims of this research were to address this gap by 1) deriving health behavior adherence profiles among CCS, and 2) examining associations among demographic, diagnosis and/or treatment exposures, cardiometabolic, physical performance, and emotional functioning with health behavior profile membership. METHODS: Participants included 397 CCS (≥5 years post-diagnosis; 10-17 years old) enrolled in the St. Jude Lifetime Cohort Study who completed physical health evaluations and questionnaires assessing health behaviors and psychological functioning. Latent profile analysis was used to derive profiles of health behavior adherence. Logistic regression and t-tests were used to examine mean-level differences and associations between profile membership with demographic, diagnosis, treatment exposures, cardiometabolic health, psychological functioning, and physical performance. RESULTS: Two profiles emerged: inactive-unhealthy-diet ("IU") and active-sedentary-unhealthy-diet ("ASU") to guidelines. More participants in IU demonstrated higher resting heart rate (mean [M], 76.54; SD = 12.00) and lower motor proficiency scores (M = 34.73; SD = 29.15) compared to ASU (resting heart rate, M = 71.95, SD = 10.74; motor proficiency, M = 50.40, SD = 31.02). CONCLUSIONS: CCS exhibited low adherence to multiple health behavior guidelines, with adherence patterns differentially associated with cardiometabolic health (i.e., resting heart rate) and physical performance. However, robust protection against all health variables was not observed. Findings suggest interventions designed to improve health outcomes should target multiple health behaviors simultaneously. PLAIN LANGUAGE SUMMARY: Pediatric cancer survivors are at-risk for detrimental health outcomes associated with cancer and treatment. Engagement in healthy lifestyle behaviors serves to reduce health vulnerabilities among adult survivors but less is known about associations with lifestyle behaviors on young survivors. This study documents patterns of lifestyle behaviors among survivors of pediatric cancer, factors that increase susceptibility to nonadherence, and associations among lifestyle behaviors and health indicators.

Provider prescription of hydroxyurea in youth and adults with sickle cell disease: A review of prescription barriers and facilitators.

Sickle cell disease (SCD) is an inherited red blood cell disorder associated with frequent painful events and organ damage. Hydroxyurea (HU) is the recommended evidence-based treatment of SCD. However, among patients eligible for HU, prescription rates are low. Utilizing a scoping review approach, we summarized and synthesized relevant findings regarding provider barriers and facilitators to the prescription of HU in youth and adults with SCD and provided suggestions for future implementation strategies to improve prescription rates. Relevant databases were searched using specified search terms. Articles reporting provider barriers and/or facilitators to prescribing HU were included. A total of 10 studies met the inclusion criteria. Common barriers to the prescription of HU identified by providers included: doubts around patients' adherence to HU and their engaging in required testing, concerns about side effects, lack of knowledge, cost and patient concerns about side effects. Facilitators to the prescription of HU included beliefs in the effectiveness of HU, provider demographics and knowledge. Findings suggest significant provider biases exist, particularly in the form of negative perceptions towards patients' ability to adhere to taking HU and engaging in the required follow-up. Improving provider knowledge and attitudes towards HU and SCD may help improve low prescription rates.

Chronic pain in children and adolescents diagnosed with cancer: the challenge of mitigating the pain and the potential of integrating exercise into pain management.

BACKGROUND: Pain is one of the most common and distressing symptoms experienced by children and adolescents diagnosed with cancer. It is vital that children and adolescents receive adequate pain management early on in their cancer treatments to mitigate pain and cancer-related symptoms. Exercise training shows particular promise in the management of acute and chronic pain among children and adolescents diagnosed with cancer. METHODS: This position paper comes to outline the challenge of mitigating pain in children and adolescents diagnosed with cancer, and the potential benefits of integrating exercise training to the management of chronic pain in this population in need. RESULTS: Integrating exercise training into the care and pain management of children and adolescents diagnosed with cancer who have chronic pain would have the advantage of addressing several shortcomings of pain medication. Pain medication aims to temporarily manage or reduce pain; it does not have the potential to directly improve a patient's physical condition in the way that exercise training can. The current paucity of data available on the use of exercise training as a complementary treatment to pain medications to reduce chronic pain in children and adolescents diagnosed with cancer allows only for hypotheses on the effectiveness of this pain management modality. CONCLUSION: More research on this important topic is necessary and mitigating pain effectively while also reducing the use of opioid pain medication is an important goal shared by patients, their families, clinicians, and researchers alike. Future research in this area has great potential to inform clinical care, clinical care guidelines, and policy-making decisions for pain management in children and adolescents diagnosed with cancer who experience chronic pain.

Prevalence and predictors of cancer-related worry and associations with health behaviors in adult survivors of childhood cancer.

BACKGROUND: Cancer-related worry (CRW) is common among cancer survivors; however, little is known about factors associated with CRW or its impact on health behaviors in adult survivors of childhood cancer. METHODS: Survivors in the St. Jude Lifetime Cohort Study (n = 3211; 51% male; mean age, 31.2 years [SD, 8.4 years]; mean time after diagnosis, 22.8 years [SD, 8.3 years]) underwent medical evaluations and completed ratings of CRW, psychological symptoms, and health behaviors. Multivariable modified Poisson regression models examined associations between CRW and treatment exposures, chronic health conditions, psychological symptoms, and health behaviors. RESULTS: Sixty-four percent of survivors (95% confidence interval [CI], 62.6-65.9) reported worry about subsequent malignancy, 45% (95% CI, 43.5-46.9) reported worry about physical problems related to cancer, and 33% (95% CI, 31.2-34.4) reported worry about relapse. Multiple psychological symptoms, treatment exposures, and chronic conditions significantly increased the risk of CRW. Survivors reporting CRW were at increased risk for substance use, inadequate physical activity, and increased health care utilization after adjustments for chronic conditions. For example, with adjustments for chronic conditions, those who endorsed CRW were more likely to have ≥5 cancer-related physician visits, ≥5 physician visits related to cancer, and ≥5 calls to a physician's office in the previous 2 years in comparison with survivors who were not worried. CRW was also associated with an increased risk of current tobacco use, past marijuana use, and current marijuana use. CONCLUSIONS: A substantial proportion of adult survivors of childhood cancer reported CRW associated with increased health care utilization. CRW may serve as an intervention target to promote well-being and adaptive health behaviors.

Pain and functional outcomes in adult survivors of childhood cancer: A report from the St. Jude Lifetime Cohort study.

BACKGROUND: Although survivors of childhood cancer are at risk of chronic pain, the impact of pain on daily functioning is not well understood. METHODS: A total of 2836 survivors (mean age, 32.2 years [SD, 8.5 years]; mean time since diagnosis, 23.7 years [SD, 8.2 years]) and 343 noncancer community controls (mean age, 35.5 years [SD, 10.2 years]) underwent comprehensive medical, neurocognitive, and physical performance assessments, and completed measures of pain, health-related quality of life (HRQOL), and social functioning. Multinomial logistic regression models, using odds ratios and 95% confidence intervals (95% CIs), examined associations between diagnosis, treatment exposures, chronic health conditions, and pain. Relative risks (RRs) between pain and neurocognition, physical performance, social functioning, and HRQOL were examined using modified Poisson regression. RESULTS: Approximately 18% of survivors (95% CI, 16.1%-18.9%) versus 8% of controls (95% CI, 5.0%-10.9%) reported moderate to very severe pain with moderate to extreme daily interference (P < .001). Severe and life-threatening chronic health conditions were associated with an increased likelihood of pain with interference (odds ratio, 2.03; 95% CI, 1.62-2.54). Pain with daily interference was found to be associated with an increased risk of impaired neurocognition (attention: RR, 1.88 [95% CI, 1.46-2.41]; and memory: RR, 1.65 [95% CI, 1.25-2.17]), physical functioning (aerobic capacity: RR, 2.29 [95% CI, 1.84-2.84]; and mobility: RR, 1.71 [95% CI, 1.42-2.06]), social functioning (inability to hold a job and/or attend school: RR, 4.46 [95% CI, 3.45-5.76]; and assistance with routine and/or personal care needs: RR, 5.64 [95% CI, 3.92-8.10]), and HRQOL (physical: RR, 6.34 [95% CI, 5.04-7.98]; and emotional: RR, 2.83 [95% CI, 2.28-3.50]). CONCLUSIONS: Survivors of childhood cancer are at risk of pain and associated functional impairments. Survivors should be screened routinely for pain and interventions targeting pain interference are needed.

Pain in long-term survivors of childhood cancer: A systematic review of the current state of knowledge and a call to action from the Children's Oncology Group.

Survivors of childhood cancer may be at risk of experiencing pain, and a systematic review would advance our understanding of pain in this population. The objective of this study was to describe: 1) the prevalence of pain in survivors of childhood cancer, 2) methods of pain measurement, 3) associations between pain and biopsychosocial factors, and 4) recommendations for future research. Data sources for the study were articles published from January 1990 to August 2019 identified in the PubMed, PsycINFO, EMBASE, and Web of Science data bases. Eligible studies included: 1) original research, 2) quantitative assessments of pain, 3) articles published in English, 4) cancers diagnosed between birth and age 21 years, 5) survivors at 5 years from diagnosis and/or at 2 years after therapy completion, and 6) a sample size >20. Seventy-three articles were included in the final review. Risk of bias was considered using the Cochrane risk of bias tool. The quality of evidence was evaluated according to Grading of Recommendations Assessment Development and Evaluation (GRADE) criteria. Common measures of pain were items created by the authors for the purpose of the study (45.2%) or health-related quality-of-life/health status questionnaires (42.5%). Pain was present in from 4.3% to 75% of survivors across studies. Three studies investigated chronic pain according the definition in the International Classification of Diseases. The findings indicated that survivors of childhood cancer are at higher risk of experiencing pain compared with controls. Fatigue was consistently associated with pain, females reported more pain than males, and other factors related to pain will require stronger evidence. Theoretically grounded, multidimensional measurements of pain are absent from the literature.

Empirically Derived Profiles of Health-Related Quality of Life in Youth and Young Adults with Sickle Cell Disease.

OBJECTIVE: Determining how the health-related quality of life (HRQOL) is impacted by living with Sickle Cell Disease (SCD) can inform psychosocial interventions. The purpose of the present study is to determine if demographic and treatment variables predict membership into empirically derived subgroups of HRQOL among youth and young adults with SCD. METHODS: Three hundred and seven youth and young adults with SCD (mean 17.63 years ± 3.74 years, 50.5% female) completed the Pediatric Quality of Life InventoryTM Sickle Cell Disease Module. Latent profile analysis examined subgroups/classes of HRQOL and relationships with demographic and treatment variables. RESULTS: Three distinct classes emerged: High HRQOL (34% of the sample), Moderate HRQOL (44% of the sample), and Low HRQOL (22% of the sample). Being female was associated with increased odds of being in the moderate or low groups. Living with more severe SCD (genotypes HbSS and HbSß0 thalassemia) was associated with increased odds of being in the Low HRQOL group. Treatment with chronic red blood cell transfusion therapy was associated with increased odds of being in the High HRQOL group. Older age predicted a small increase in the odds of being in the Low versus High HRQOL group. CONCLUSIONS: The present study adds to the literature on HRQOL in SCD by exploring person-centered, empirically derived groups of HRQOL. Identification of demographic and treatment factors that predict membership into those groups within a large sample assists in tailoring needed psychosocial interventions for youth with SCD.

Suicidality among adult survivors of childhood cancer: A report from the St. Jude Lifetime Cohort Study.

BACKGROUND: Suicide is a serious public health concern. An increased risk of suicide ideation previously has been reported among survivors of childhood cancer. METHODS: Suicide mortality was assessed for all potentially eligible survivors (those aged ≥18 years who were ≥5 years after their cancer diagnosis; 7312 survivors). Risk factors for acute suicidal ideation were assessed among clinically evaluated survivors (3096 survivors) and the prevalence of acute ideation was compared with that of community controls (429 individuals). The prevalence of 12-month suicidality was assessed among survivors who could be compared with population data (1255 survivors). Standardized mortality ratios compared rates of suicide mortality among survivors with those of the general population. Risk ratios (RRs) and 95% confidence intervals (95% CIs) derived from generalized linear models identified risk factors associated with acute suicidal ideation. Standardized incidence ratios (SIRs) compared the prevalence of 12-month suicidality among survivors with that of a matched sample from the general population. RESULTS: Survivors reported a similar 12-month prevalence of ideation compared with the general population (SIR, 0.68; 95% CI, 0.35-1.01) and a lower prevalence of suicidal behaviors (planning: SIR, 0.17 [95% CI, 0.07-0.27]; attempts: SIR, 0.07 [95% CI, 0.00-0.15]) and mortality (standardized mortality ratio, 0.60; 95% CI, 0.34-0.86). Among survivors, depression (RR, 12.30; 95% CI, 7.89-19.11), anxiety (RR, 2.19; 95% CI, 1.40-3.40), and financial stress (RR, 1.47; 95% CI, 1.00-2.15) were found to be associated with a higher prevalence of acute suicidal ideation. CONCLUSIONS: Survivors of childhood cancer were found to be at a lower risk of suicidal behaviors and mortality, yet endorsed a prevalence of ideation similar to that of the general population. These results are in contrast to previous findings of suicidal ideation among survivors and support the need for further research to inform screening strategies and interventions. LAY SUMMARY: The purpose of the current study was to compare the risk of suicidal ideation, behaviors, and mortality in adult survivors of childhood cancer with those of the general population. Risk factors associated with suicidal ideation among survivors of childhood cancer also were examined. Survivors of childhood cancer reported a similar risk of ideation compared with the general population, but a lower risk of suicidal behaviors and mortality. Psychological health and financial stressors were found to be risk factors associated with suicidal ideation. Although adult survivors of childhood cancer did not report a greater risk of suicidality compared with the general population, psychosocial care in survivorship remains essential.

Longitudinal pain and pain interference in long-term survivors of childhood cancer: A report from the Childhood Cancer Survivor Study.

BACKGROUND: The objective of this study was to characterize the prevalence and risk of pain, pain interference, and recurrent pain in adult survivors of childhood cancer in comparison with siblings. METHODS: This study analyzed longitudinal data from survivors (n = 10,012; 48.7% female; median age, 31 years [range, 17-57 years]; median time since diagnosis, 23 years) and siblings (n = 3173) from the Childhood Cancer Survivor Study. Survivors were diagnosed between 1970 and 1986 at 1 of 26 participating sites. Associations between risk factors (demographics, cancer-related factors, and psychological symptoms) and pain, pain interference, and recurrent pain (5 years apart) were assessed with multinomial logistic regression. Path analyses examined cross-sectional associations between risk factors and pain outcomes. RESULTS: Twenty-nine percent of survivors reported moderate to severe pain, 20% reported moderate to extreme pain interference, and 9% reported moderate to severe recurrent pain. Female sex, a sarcoma/bone tumor diagnosis, and severe/life-threatening chronic medical conditions were associated with recurrent pain. Depression and anxiety were associated with increased risk for all pain outcomes. Poor vitality mediated the effects of anxiety on high pain and pain interference (root mean square error of approximation, 0.002). CONCLUSIONS: A large proportion of adult survivors report moderate to severe pain and pain interference more than 20 years after their diagnosis. Increased screening and early intervention for pain interference and recurrent pain are warranted.

eHealth and mHealth interventions in pediatric cancer: A systematic review of interventions across the cancer continuum.

OBJECTIVES: The primary objectives were to (a) identify current published research in electronic health (eHealth) and mobile health (mHealth) interventions for youth undergoing cancer treatment and child, adolescent, and young adult survivors of childhood cancer and (b) critically appraise the current scientific evidence on their effectiveness and efficacy. As an exploratory aim, we identified pediatric cancer patients' and survivors' perceptions, attitudes, and concerns related to eHealth and mHealth interventions. METHODS: A comprehensive search of the literature was performed to identify peer-reviewed journal articles that included the use of mHealth and eHealth interventions among youth receiving active cancer treatment and survivors of childhood cancer through the age range of childhood to young adulthood (mean age 21 years or younger at the time of diagnosis; mean age 39 years or younger at the time of intervention). The search was conducted via six electronic databases: PubMed, CINAHL, EMBASE, PsycINFO, IEEEXplore and the Cochrane Library. RESULTS: Of the 1879 potential records examined, 21 met criteria for inclusion for a total of 1506 participants. Of the investigations included, 13 were randomized controlled trials, and eight were nonrandomized studies. Findings demonstrated feasibility as well as acceptability with these approaches. Evidence of efficacy for interventions targeting emotional distress, health behaviors, health outcomes, and neurocognitive functioning was mixed. CONCLUSIONS: Given the growing evidence of efficacy, coupled with increasing access to digital technologies, eHealth and mHealth may serve an important role in improving mental and physical health outcomes of youth undergoing cancer treatment and child, adolescent, and young adult survivors of childhood cancer.

The Physical and Psychological Experience of Rowing the North Atlantic Solo and Unassisted.

INTRODUCTION: The present study followed an individual's successful, record-setting, solo, unsupported row across the North Atlantic Ocean to gain an understanding of the physical and psychological experience of this extreme endurance feat. METHODS: The participant was a 37-y-old male endurance athlete. Over the course of his nearly 39-d row, he provided daily ratings of effort, physical symptoms, and psychological experiences via a self-report questionnaire. Quantitative data were analyzed using simulation modelling analysis to examine within-day and cross-lagged correlations between perceived exertion and all other variables. Qualitative data were examined via thematic content analysis. RESULTS: Results showed that, on average, the participant experienced low levels of pain intensity, pain interference, fatigue interference, sleepiness, loneliness, boredom, anxiety, and frustration, in contrast to moderate scores for fatigue, restfulness, positive emotions, calmness, and confidence. There were statistically significant correlations between higher levels of perceived exertion and higher same-day levels of pain interference, fatigue, and fatigue interference, as well as lower same-day levels of calmness, loneliness, and boredom. Qualitative responses revealed 3 primary stressor types (internal physical, internal psychological, and external stressors) and 5 coping responses (acceptance/mindfulness, active response/problem solving, adjusting expectations/goal setting, distraction, and resignation). CONCLUSIONS: Study findings indicate that the extreme athlete experienced physical and emotional challenges, but he demonstrated positive adjustment via the frequent experience of positive emotions and proficient use of a broad set of coping strategies matched to the daily stressor being addressed.

Understanding User Experience: Exploring Participants' Messages With a Web-Based Behavioral Health Intervention for Adolescents With Chronic Pain.

BACKGROUND: Delivery of behavioral health interventions on the internet offers many benefits, including accessibility, cost-effectiveness, convenience, and anonymity. In recent years, an increased number of internet interventions have been developed, targeting a range of conditions and behaviors, including depression, pain, anxiety, sleep disturbance, and eating disorders. Human support (coaching) is a common component of internet interventions that is intended to boost engagement; however, little is known about how participants interact with coaches and how this may relate to their experience with the intervention. By examining the data that participants produce during an intervention, we can characterize their interaction patterns and refine treatments to address different needs. OBJECTIVE: In this study, we employed text mining and visual analytics techniques to analyze messages exchanged between coaches and participants in an internet-delivered pain management intervention for adolescents with chronic pain and their parents. METHODS: We explored the main themes in coaches' and participants' messages using an automated textual analysis method, topic modeling. We then clustered participants' messages to identify subgroups of participants with similar engagement patterns. RESULTS: First, we performed topic modeling on coaches' messages. The themes in coaches' messages fell into 3 categories: Treatment Content, Administrative and Technical, and Rapport Building. Next, we employed topic modeling to identify topics from participants' message histories. Similar to the coaches' topics, these were subsumed under 3 high-level categories: Health Management and Treatment Content, Questions and Concerns, and Activities and Interests. Finally, the cluster analysis identified 4 clusters, each with a distinguishing characteristic: Assignment-Focused, Short Message Histories, Pain-Focused, and Activity-Focused. The name of each cluster exemplifies the main engagement patterns of that cluster. CONCLUSIONS: In this secondary data analysis, we demonstrated how automated text analysis techniques could be used to identify messages of interest, such as questions and concerns from users. In addition, we demonstrated how cluster analysis could be used to identify subgroups of individuals who share communication and engagement patterns, and in turn facilitate personalization of interventions for different subgroups of patients. This work makes 2 key methodological contributions. First, this study is innovative in its use of topic modeling to provide a rich characterization of the textual content produced by coaches and participants in an internet-delivered behavioral health intervention. Second, to our knowledge, this is the first example of the use of a visual analysis method to cluster participants and identify similar patterns of behavior based on intervention message content.

Patient and provider perceptions of Internet-delivered cognitive behavior therapy for recent cancer survivors.

PURPOSE: Although most cancer survivors adjust well, a subset experiences clinical levels of anxiety and depression following cancer treatment. Internet-delivered cognitive behavior therapy (iCBT) is a promising intervention for symptoms of anxiety and depression among survivors; however, patient and provider perceptions of iCBT have not been examined. METHODS: We employed an exploratory qualitative method and conducted semi-structured interviews with 13 cancer survivors and 10 providers to examine iCBT strengths and weaknesses, areas for improvement, and perceived barriers to program completion. A thematic content analysis approach was used to analyze the data. RESULTS: The majority of survivors liked the flexible, convenient, and private nature of the program. Many viewed the program as helping them feel less alone following cancer treatment. Areas of improvement included suggestions of additional information regarding cancer treatment side effects. Barriers to completing the program were identified by a minority of survivors and included finding time to complete the program and current symptoms. Providers liked the program's accessibility and its ability to provide support to patients after cancer treatment. All providers perceived the program as useful in their current work with survivors. Concerns around the fit of the program (e.g., for particular patients) were expressed by a minority of providers. CONCLUSIONS: Results provide additional evidence for the acceptability of an iCBT program among recent cancer survivors and providers in oncology settings. The current study highlights the value of research exploring iCBT for cancer survivors and provides insights for other groups considering Internet-delivered care for survivors.

Linking Illness in Parents to Health Anxiety in Offspring: Do Beliefs about Health Play a Role?

BACKGROUND: The cognitive behavioural (CB) model of health anxiety proposes parental illness leads to elevated health anxiety in offspring by promoting the acquisition of specific health beliefs (e.g. overestimation of the likelihood of illness). AIMS: Our study tested this central tenet of the CB model. METHOD: Participants were 444 emerging adults (18-25-years-old) who completed online measures and were categorized into those with healthy parents (n = 328) or seriously ill parents (n = 116). RESULTS: Small (d = .21), but significant, elevations in health anxiety, and small to medium (d = .40) elevations in beliefs about the likelihood of illness were found among those with ill vs. healthy parents. Mediation analyses indicated the relationship between parental illness and health anxiety was mediated by beliefs regarding the likelihood of future illness. CONCLUSIONS: Our study incrementally advances knowledge by testing and supporting a central proposition of the CB model. The findings add further specificity to the CB model by highlighting the importance of a specific health belief as a central contributor to health anxiety among offspring with a history of serious parental illness.

Agreement between youth and caregiver report of pain and functioning in pediatric sickle cell disease: PedsQL sickle cell disease module.

ABSTRACT: Pain is a primary symptom of sickle cell disease (SCD) and is often severe and chronic. To treat SCD-related pain, proper assessment of SCD pain among youth, including the degree of concordance or agreement between youth and caregiver reports of pain, is essential but has not yet been adequately evaluated. In this study, 525 youth with SCD and their parents were evaluated as part of the Sickle Cell Clinical Research and Intervention Program (SCCRIP) to examine pain rating concordance and predictors of concordance. Youth and parents completed the Pediatric Quality of Life Inventory Sickle Cell Disease module (PedsQL-SCD) to measure pain, pain interference, and pain-related constructs. Disease, clinical, and demographic variables were obtained from the SCCRIP database. Intraclass correlations demonstrated moderate-to-poor consistency between youth and caregiver reports of pain and pain interference (ICCs range from 0.17 to 0.54). Analysis of covariance and regression models found that patient age, frequency of hospitalizations and emergency department (ED) visits, economic hardship, and fetal hemoglobin levels were significantly associated with varying pain-rating agreement levels among parent proxy and child self-report pain. Concordance of pain assessments among youth with SCD and their caregivers using the PedsQL-SCD Module was moderate at best, corroborating prior research. Youth factors predicting discordance among pain-related factors included increased ED visits, older age, and female sex. Collectively, these results bolster the use of integrated pain assessments to reduce parent-child discrepancies, thereby improving the adequacy of SCD-related pain assessment and treatment.

Understanding Adolescents' Experiences With Menstrual Pain to Inform the User-Centered Design of a Mindfulness-Based App: Mixed Methods Investigation Study.

BACKGROUND: Digital interventions are increasingly popular for the provision of nonpharmacological pain interventions, but few exist for adolescents with menstrual pain. User-centered design involves incorporating users across phases of digital health intervention design, development, and implementation and leads to improved user engagement and outcomes. A needs assessment is the first step of this approach. OBJECTIVE: The goal of this study was to conduct a needs assessment to understand menstrual pain management needs and preferences and mindfulness experiences, preferences, and knowledge of adolescents with menstrual pain to inform the future development of an app for managing menstrual pain. METHODS: We used an explanatory sequential mixed method design that included a survey followed by focus groups. Adolescents aged 13-17 years completed a survey (n=111) and participated in focus groups (n=16). Data were analyzed using descriptive statistics and thematic content analysis and synthesized to provide specific recommendations based on adolescent responses. RESULTS: Adolescents (n=111) who completed the survey reported a moderate understanding of mindfulness and menstrual pain. Over three-quarters (n=87, 78%) of participants practiced some form of mindfulness and 87% (n=97) of survey participants used nonpharmacological pain management strategies. Teens had a moderate perception that mindfulness could help their menstrual pain (mean 4.51/10, SD 2.45, with higher scores suggesting more interest). Themes were generated related to mindfulness experiences, menstrual pain knowledge and experiences, and app functionality. These themes underscored adolescents' need for continued support and flexible access to mindfulness activities; their awareness of multiple influences to pain, with potential for further education in this area; and the need for menstrual pain-specific content, along with content relevant to typical day-to-day experiences of adolescents. CONCLUSIONS: Adolescents with menstrual pain have an interest in using a mindfulness app for pain but have unique needs that need to be addressed to ensure app engagement and relevance for this population. Concrete recommendations for future app development are provided.

Characterization of chronic pain, pain interference, and daily pain experiences in adult survivors of childhood cancer: a report from the Childhood Cancer Survivor Study.

ABSTRACT: Although survivors of childhood cancer are at an increased risk, little is known about the prevalence of chronic pain, associated interference, and daily pain experiences. Survivors (N = 233; mean age = 40.8 years, range 22-64 years; mean time since diagnosis = 32.7 years) from the Childhood Cancer Survivor Study completed pain and psychosocial measures. Survivors with chronic pain completed 2-week, daily measures assessing pain and psychological symptoms using mHealth-based ecological momentary assessment. Multivariable-modified Poisson and linear regression models estimated prevalence ratio estimates (PR) and mean effects with 95% confidence intervals (CI) for associations of key risk factors with chronic pain and pain interference, respectively. Multilevel mixed models examined outcomes of daily pain and pain interference with prior day symptoms. Ninety-six survivors (41%) reported chronic pain, of whom 23 (24%) had severe interference. Chronic pain was associated with previous intravenous methotrexate treatment (PR = 1.6, 95% CI 1.1-2.3), respiratory (PR = 1.8, 95% CI 1.2-2.5), gastrointestinal (PR = 1.6, 95% CI 11.0-2.3), and neurological (PR = 1.5, 95% CI 1.0-2.1) chronic health conditions, unemployment (PR = 1.4, 95% CI 1.0-1.9) and clinically significant depression and anxiety (PR = 2.9, 95% CI 2.0-4.2), as well as a diagnosis of childhood Ewing sarcoma or osteosarcoma (PR = 1.9, 95% CI 1.0-3.5). Higher pain interference was associated with cardiovascular and neurological conditions, unemployment and clinical levels of depression and/or anxiety, and fear of cancer recurrence. For male, but not female survivors, low sleep quality, elevated anxiety, and elevated depression predicted high pain intensity and interference the next day. A substantial proportion of childhood cancer survivors experience chronic pain and significant associated interference. Chronic pain should be routinely evaluated, and interventions are needed.

Smartphone apps for menstrual pain and symptom management: A scoping review.

The past decade marks a surge in the development of mobile apps used to digitally track and monitor aspects of personal health, including menstruation. Despite a plethora of menstruation-related apps, pain and symptom management content available in apps has not been systematically examined. The objective of this study was to evaluate app characteristics, overall quality (i.e., engagement, functionality, design aesthetics, and information), nature and quality of pain and symptom tracking features, and availability and quality of pain-related intervention content. A scoping review of apps targeting facets of the menstrual experience was conducted by searching the Apple App Store. After removal of duplicates and screening, 119 apps targeting menstrual experiences were retained. Pain and menstrual symptoms tracking were available in 64 % of apps. Checkboxes or dichotomous (present/absent) reporting was the most common method of tracking symptoms and was available in 75 % of apps. Only a small subset (n = 13) of apps allowed for charting/graphing of pain symptoms across cycles. Fourteen percent of apps included healthcare professionals or researchers in their development and one app reported use of end-users. Overall app quality measured through the Mobile App Rating Scale (MARS) was found to be acceptable; however, the apps ability to impact pain and symptom management (e.g., impact on knowledge, awareness, behaviour change, etc.) was rated as low. Only 10 % of apps (n = 12) had interventions designed to manage pain. The findings suggest that despite pain and symptom management content being present in apps, this content is largely not evidence-based in nature. More research is needed to understand how pain and symptom management content can be integrated into apps to improve user experiences.