Acceptability, feasibility and preliminary effects of an online group psychotherapy intervention for adolescents and young adults with cancer.

BACKGROUND: Adolescents and young adults (AYAs; ages 15-29 years) diagnosed with cancer are increasingly recognized as an oncology population with distinct psychosocial needs. However, few specialized psychosocial interventions for AYAs currently exist. This study reports on the development of a novel group-based psychotherapy intervention to address the psychosocial needs of AYAs. The objective was to evaluate the acceptability, feasibility, and preliminary effects of the intervention. METHODS: The manualized group psychotherapy program is delivered virtually over an 8-week period by registered psychologists. Four groups (n = 5-11 AYAs per group) with a total of N = 33 participants (Mage = 20.97 years, SD = 3.68, range = 15-29 years, 76% women) were conducted. Recruitment and retention data assessed intervention feasibility. Patient-reported psychosocial outcomes were measured at baseline and immediately following the intervention to assess preliminary effects. Acceptability was assessed following the intervention using a self-report measure of participant satisfaction. RESULTS: Overall, the completion rate of the intervention was 85% (n = 28). All participants "strongly agreed" (88%) or "agreed" (13%) that they were satisfied with the group. Meeting, sharing experiences, and expressing feelings with other AYAs were identified as the most helpful aspects. Participants reported significant improvements in emotional (p < 0.05) and functional (p < 0.01) quality of life from baseline to immediately post-intervention with medium effect sizes (d = 0.58-0.70). CONCLUSIONS: Findings suggest that the intervention is feasible, acceptable, and shows promise for improving psychosocial outcomes for AYAs. Further research will refine the intervention and establish efficacy in a randomized trial.

Social factors associated with self-reported changes in mental health symptoms among youth in the COVID-19 pandemic: a cross-sectional survey.

BACKGROUND: Children and youth experienced marked impacts on day-to-day life in the COVID-19 pandemic that were associated with poorer familial and friend relationships, and greater mental health challenges. Few studies provide self-report data on mental health symptoms from children and youth themselves. We sought to examine the associations between social factors and child and youth self-reported symptoms of worsened mood, anxiety, and irritability during the COVID-19 pandemic. METHODS: A nationally representative cross-sectional survey was administered online to collect self-report data across 10 Canadian provinces among children (11-14 years) and youth (15-18 years), April-May 2022. Age-appropriate questions were based on The Partnership for Maternal, Newborn & Child Health and the World Health Organization of the United Nations H6 + Technical Working Group on Adolescent Health and Well-Being consensus framework and the Coronavirus Health and Impact Survey. Associations between a priori defined social factors (e.g., relationship quality) and respondent self-reported mental health were evaluated using ordinal logistic regression models adjusted for age, sex, and geographic location. RESULTS: We analyzed data from 483 (51.7%) children (11-14 years; 227, 47.0% girls) and 450 (48.3%) youth (15-18 years; 204, 45.3% girls). The parents of most children and youth had resided in Canada for over 20 years (678, 72.7%). Over one-quarter of children and youth self-identified as Black, Indigenous, or a Person of Color (134, 27.7%; 134, 29.8%, respectively). Over one-third of children and youth self-reported symptoms of worsened mood (149, 30.9%; 125, 27.8%, respectively), anxiety (181, 37.5%; 167, 37.1%, respectively), or irritability (160, 33.1%; 160, 35.6%, respectively) during, compared to pre-pandemic. In descending order of odds ratios (OR), for children and youth, worsened familial relationships (during compared to pre-pandemic) was associated with the self-reported symptoms of worsened mood (child: OR 4.22, 95%CI 2.51-6.88; youth: OR 6.65 95%CI 3.98-11.23), anxiety (child: OR 4.24, 95%CI2.69-6.75; youth: OR 5.28, 95%CI 3.17-8.86), and irritability (child: OR 2.83, 95%CI 1.76-4.56; youth: OR 6.46, 95%CI 3.88-10.90). CONCLUSIONS: Self-reported data from a nationally representative sample of children and youth suggest strong associations between social factors and mental health during the COVID-19 pandemic. Interventions targeting child and youth familial relationships may positively impact child and youth mental health.

Well-being approaches targeted to improve child and youth health post-COVID-19 pandemic: a scoping review.

BACKGROUND: Our previous work synthesized published studies on well-being interventions during COVID-19. As we move into a post-COVID-19 pandemic period there is a need to comprehensively review published strategies, approaches, and interventions to improve child and youth well-being beyond deleterious impacts experienced during COVID-19. METHODS: Seven databases were searched from inception to January 2023. Studies were included if they: (1) presented original data on an approach (i.e., approach applied) or (2) provided recommendations to inform development of a future approach (i.e., approach suggested), (3) targeted to mitigate negative impacts of COVID-19 on child and youth (≤18 year) well-being, and (4) published on or after December 2019. RESULTS: 39 studies (n = 4/39, 10.3% randomized controlled trials) from 2021 to 2023 were included. Twenty-two studies applied an approach (n = 22/39, 56.4%) whereas seventeen studies (n = 17/39, 43.6%) suggested an approach; youth aged 13-18 year (n = 27/39, 69.2%) were most frequently studied. Approach applied records most frequently adopted an experimental design (n = 11/22, 50.0%), whereas approach suggested records most frequently adopted a cross-sectional design (n = 13/22, 59.1%). The most frequently reported outcomes related to good health and optimum nutrition (n = 28/39, 71.8%), followed by connectedness (n = 22/39, 56.4%), learning, competence, education, skills, and employability (n = 18/39, 46.1%), and agency and resilience (n = 16/39, 41.0%). CONCLUSIONS: The rapid onset and unpredictability of COVID-19 precluded meaningful engagement of children and youth in strategy development despite widespread recognition that early engagement can enhance usefulness and acceptability of interventions. Published or recommended strategies were most frequently targeted to improve connectedness, belonging, and socialization among children and youth.

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.

Measuring fear of cancer recurrence in survivors of childhood cancer: Development and preliminary validation of the Fear of Cancer Recurrence Inventory (FCRI)-Child and Parent versions.

OBJECTIVE: Fear of cancer recurrence (FCR) is a common and distressing psychosocial concern for adult cancer survivors. Data on this construct in child survivors is limited and there are no validated measures for this population. This study aimed to adapt the Fear of Cancer Recurrence Inventory-Short Form (FCRI-SF) for survivors of childhood cancer aged 8-18 years (Fear of Cancer Recurrence Inventory-Child version [FCRI-C]) and their parents (Fear of Cancer Recurrence Inventory-Parent version [FCRI-P]) to self-report on their own FCR and to examine the initial psychometric properties. METHODS: The FCRI-SF was adapted through expert panel input and cognitive interviews with child survivors <18 years. The factor structure, internal consistency and construct and criterion validity of the FCRI-C and FCRI-P were examined in 124 survivors of childhood cancer (43% female; Mage  = 14.58 years, SD = 2.90) and 106 parents (90% mothers). RESULTS: All FCRI-SF items were retained for the FCRI-C with simplified language. The internal consistencies of the FCRI-C (α = 0.88) and FCRI-P (α = 0.83) were good. Exploratory factor analyses yielded one-factor structures for both measures. Higher scores on the FCRI-C and FCRI-P were associated with greater intolerance of uncertainty and pain catastrophizing. Higher child FCR was also related to more hypervigilance to bodily symptoms. Parents with higher FCR reported contacting their child's doctors and nurses and scheduling medical appointments for their child more frequently. Children reported significantly lower FCR compared to parents. CONCLUSIONS: The FCRI-C and FCRI-P demonstrated strong reliability and preliminary validity. This study offers preliminary data to support the use of the FCRI-C and FCRI-P to measure FCR in survivors of childhood cancer aged 8-18 years and their parents.

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.

A Longitudinal Examination of Common Dyadic Coping and Sexual Distress in New Parent Couples during the Transition to Parenthood.

New parents experience significant disruption to their sexual relationships such as lower desire and sexual frequency relative to prepregnancy. Little is known about the sexual distress new parents feel related to these changes, how sexual distress evolves over time, or how coping with stress relates to this distress. New parent couples who engage in more adaptive, joint coping with mutual stressors-common dyadic coping (CDC)-may be better able to manage distress related to their sexuality and thus, experience less sexual distress at 3-months postpartum and experience more marked improvement over time. In 99 first-time parent couples, we examined the link between CDC measured at 3-months postpartum and trajectories of sexual distress across 3-, 6-, and 12-months postpartum. Analyses used dyadic latent growth curve modeling informed by the actor-partner interdependence model. Mothers' sexual distress at 3-months postpartum was clinically elevated and higher than their partner's. Mothers' sexual distress declined significantly over time, whereas partners' sexual distress remained low and stable. An individual's higher perceptions of CDC was significantly associated with their own (but not their partner's) lower sexual distress at 3-months postpartum. No significant associations were found between CDC and change in sexual distress over time. How new parents jointly cope with stressors early in the postpartum period may lessen the distress they have about their sexuality at a time when most couples have just resumed sexual activity. Results identify CDC as a possible novel target for interventions aimed at helping couples manage sexual distress during the transition to parenthood.

Los padres recientes sufren una alteración significativa de sus relaciones sexuales, como menos deseo y frecuencia sexual, en comparación con el periodo anterior al embarazo. Se sabe muy poco acerca del distrés sexual que sienten los padres recientes en relación con estos cambios, cómo evoluciona el distrés sexual con el tiempo o cómo el afrontamiento del estrés se relaciona con este distrés. Las parejas de padres recientes que participan en un afrontamiento conjunto más adaptativo de los factores desencadenantes de estrés mutuos -afrontamiento diádico común - pueden ser más capaces de manejar el distrés relacionado con su sexualidad y, por lo tanto, sufrir menos distrés sexual tres meses después del parto, así como tener mejoras más marcadas con el tiempo. En 99 parejas de padres primerizos, analizamos la conexión entre el afrontamiento diádico común medido tres meses después del parto y las trayectorias de distrés sexual a lo largo de los 3, los 6 y los 12 meses después del parto. En los análisis se utilizó el modelo de curva de crecimiento latente diádico orientado por el modelo de interdependencia actor-pareja. El distrés sexual de las madres tres meses después del parto fue clínicamente elevado y mayor que el de sus parejas. El distrés sexual de las madres disminuyó considerablemente con el tiempo, mientras que el distrés sexual de sus parejas se mantuvo bajo y estable. Las percepciones más elevadas de una persona con respecto al afrontamiento diádico común estuvieron asociadas considerablemente con su propio distrés sexual más bajo (pero no con el de sus parejas) tres meses después del parto. No se hallaron asociaciones significativas entre el afrontamiento diádico común y el cambio en el distrés sexual con el tiempo. La manera en la que los padres recientes afrontan conjuntamente los factores desencadenantes de estrés a principios del periodo de posparto puede disminuir el distrés que tienen por su sexualidad en un momento cuando la mayoría de las parejas acaban de reanudar su actividad sexual. Los resultados reconocen el afrontamiento diádico común como posible objetivo nuevo para las intervenciones orientadas a ayudar a las parejas a manejar el distrés sexual durante la transición a la paternidad.

Impact of End-of-Life Circumstances on the Adjustment of Bereaved Siblings of Children Who Died from Cancer.

The aim of this study was to examine the impact of end-of-life (EoL) circumstances on grief and internalizing symptoms among bereaved siblings. Bereaved families (N = 88) were recruited from three sites 3-12 months (M = 11.57, SD = 3.48) after their child's death from cancer. One sibling per family aged 8-17 years (M = 12.41, SD = 2.64) was randomly selected to participate. Families completed measures of siblings' grief and internalizing symptoms, as well as a structured interview about circumstances surrounding the death. Mother and sibling reports of EoL circumstances were generally concordant, except there was a discrepancy between mothers and children about whether or not children expected their sibling's death (t(75) = 1.52, p = .018). Mother reports of sibling internalizing symptoms were above the normative mean (t(83) = 4.44, p ≤ .001 (M = 56.01 ± 12.48), with 39% (n = 33) in the borderline/clinical range. Sibling opportunity to say goodbye was associated with greater grief-related growth (t(79) = - 1.95, p = .05). Presence at the death and wishing they had done something differently were both associated with greater grief (t(80) = - 2.08, p = .04 and t(80) = - 2.24, p = .028, respectively) and grief-related growth (t(80) = - 2.01, p = .048 and t(80) = - 2.31, p = .024, respectively). However, findings were primarily unique to sibling report, with few mother-reported effects. The adjustment of bereaved siblings may be affected by certain modifiable circumstances surrounding the death of their brother or sister. A proportion of bereaved siblings had elevated internalizing symptoms irrespective of circumstances at EoL. Further work is needed to understand predictors of adjustment among bereaved siblings to provide better support and optimize their outcomes.

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.

Factors associated with parents' experiences using a knowledge translation tool for vaccination pain management: a qualitative study.

BACKGROUND: Vaccination is a common painful procedure for children. Parents' concern regarding vaccination pain is a significant driver of vaccine hesitancy. Despite the wealth of evidence-based practices available for managing vaccination pain, parents lack knowledge of, and access to, these strategies. Knowledge translation (KT) tools can communicate evidence-based information to parents, however little is known about what factors influence parents' use of these tools. A two-page, electronic KT tool on psychological, physical, and pharmacological vaccination pain management strategies for children, was shared with parents as part of a larger mixed methods study, using explanatory sequential design, exploring factors related to uptake of this KT tool. The aim of this qualitative study was to understand what influenced parents' perceptions of the relevance of the KT tool, as well as their decision as to whether to use the tool. METHODS: A qualitative descriptive design was used. A total of 20 parents of children aged 0-17 years (n = 19 mothers) reviewed the KT tool ahead of their child's upcoming vaccination and participated in a semi-structured interview at follow-up. Interviews were recorded, transcribed verbatim, and analyzed with reflexive thematic analysis using an inductive approach. RESULTS: The analysis generated three interrelated themes which described factors related to parents' use of the KT tool: (1) Relevance to parents' needs and circumstances surrounding their child's vaccination; (2) Alignment with parents' personal values around, and experiences with, vaccination pain management (e.g., the importance of managing pain); and (3) Support from the clinical environment for implementing evidence-based strategies (e.g., physical clinical environment and quality of interactions with the health care provider). CONCLUSIONS: Several factors were identified as central to parents' use of the KT tool, including the information itself and the clinical environment. When the tool was perceived as relevant, aligned with parents' values, and was supported by health care providers, parents were more inclined to use the KT tool to manage their children's vaccination pain. Future research could explore other factors related to promoting engagement and uptake when creating parent-directed KT tools for a range of health-related contexts.

Fear of cancer recurrence in childhood cancer survivors: A developmental perspective from infancy to young adulthood.

AIMS: Fear of cancer recurrence (FCR) is among the most prevalent and distressing concerns reported by cancer survivors. While younger age is the most consistent predictor of elevated FCR, research to date has focused almost exclusively on adult cancer survivors. This is despite the fact that children with cancer are more likely to survive compared to adults, and will become regular, lifelong users of the medical system to mitigate the effects of toxic treatment. The early experience of cancer yields unique challenges and circumstances that may impact children's capacity for and experience of FCR across the developmental trajectory. The aim of this paper is to present a developmental perspective of FCR from infancy to young adulthood. METHODS: Drawing on the developmental science literature and recent theoretical advancements in FCR, we outline cognitive and social factors that may influence children's capacity for and experience of FCR across the developmental trajectory. RESULTS: First, distinct developmental groups that fall under the classification of "childhood cancer survivor," and that all require attention, are summarized. Using the structure of these groupings, we centrally provide a developmental perspective of FCR that offers a useful starting point for research in pediatric populations. Key research gaps, including the need for validated assessment tools to measure FCR in child and adolescent survivors, are highlighted. CONCLUSIONS: Consideration of the unique context of childhood is needed to guide the identification of childhood cancer survivors at risk for FCR as well as the development of effective FCR interventions for this population.

When "a headache is not just a headache": A qualitative examination of parent and child experiences of pain after childhood cancer.

OBJECTIVE: Today, more than 80% of children diagnosed with cancer are expected to survive. Despite the high prevalence of pain associated with the diagnosis and treatment of childhood cancer, there is a limited understanding of how having cancer shapes children's experience and meaning of pain after treatment has ended. This study addresses this gap by exploring childhood cancer survivors' (CCS') experiences of pain from their perspective and the perspective of their parents. METHODS: Twenty semi-structured interviews were completed with CCS (50% female; mean age = 13.20 y, range = 8-17 y) and their parents (90% mothers). Data were analyzed using interpretive phenomenological analysis. RESULTS: Analyses revealed three superordinate themes present in the data: (a) pain is a changed experience after childhood cancer; (b) new or ambiguous pains may be interpreted by CCS and parents as a threat of disease recurrence, late effects, or a secondary cancer; and (c) pain interpretation occurs within the broader context of how CCS and parents appraise their cancer experience. Parents generally appraised their child's cancer and pain as more threatening and were influential in guiding their child's interpretations. CONCLUSIONS: The cancer experience played an important role in shaping CCS' and their parents' experience and interpretation of pain in survivorship. This study provides novel data to inform the development and refinement of new and existing conceptual models of pain and symptom perception after cancer. The results also point to key areas for future investigation and clinical intervention to address the issue of pain in cancer survivorship.

Parent Pain Cognitions and Treatment Adherence in Juvenile Idiopathic Arthritis.

OBJECTIVE: Given the high levels of pain and low rates of treatment adherence in children with juvenile idiopathic arthritis (JIA) and their families, this study sought to examine the relationship between parent pain cognitions (i.e., pain catastrophizing, fear of pain) and treatment adherence, and how barriers to treatment (e.g., forgetting treatments, children resisting injections) may be implicated in this relationship. METHODS: Parents of children under 18 years of age who have been diagnosed with JIA were recruited to complete an online survey. In total, 221 parents (93% mothers) of children aged 2-17 years (M = 11.10, SD = 4.25) took part, completing questions regarding their pain cognitions, perceived barriers to treatment, and their child's arthritis treatment adherence ability. RESULTS: Hierarchical regressions demonstrated that both pain cognitions (i.e., pain catastrophizing and fear of pain) were related to a decrease in parent-reported treatment adherence, however, pain catastrophizing was no longer significant when fear of pain was added to the model. The presence of treatment barriers partially mediated the relationship between fear of pain and treatment adherence, above and beyond the alternate model proposed. CONCLUSION: These results suggest that parent pain catastrophizing and fears of pain are related to a greater difficulty following treatment plans, possibly in part because of barriers parents experience that preclude adherence. Given these findings, the identification and management of parent pain cognitions is critical to improving treatment adherence and outcomes for children with JIA and their families.

Health Researchers' Use of Social Media: Scoping Review.

BACKGROUND: Health researchers are increasingly using social media in a professional capacity, and the applications of social media for health researchers are vast. However, there is currently no published evidence synthesis of the ways in which health researchers use social media professionally, and uncertainty remains as to how best to harness its potential. OBJECTIVE: This scoping review aimed to explore how social media is used by health researchers professionally, as reported in the literature. METHODS: The scoping review methodology guided by Arksey and O'Malley and Levac et al was used. Comprehensive searches based on the concepts of health research and social media were conducted in MEDLINE, EMBASE, CINAHL, PsycINFO, ERIC, and Web of Science databases, with no limitations applied. Articles were screened at the title and abstract level and at full text by two reviewers. One reviewer extracted data that were analyzed descriptively to map the available evidence. RESULTS: A total of 8359 articles were screened at the title and abstract level, of which 719 were also assessed at full text for eligibility. The 414 articles identified for inclusion were published in 278 different journals. Studies originated from 31 different countries, with the most prevalent being the United States (52.7% [218/414]). The health discipline of the first authors varied, with medicine (33.3% [138/414]) being the most common. A third of the articles covered health generally, with 61 health-specific topics. Papers used a range of social media platforms (mean 1.33 [SD 0.7]). A quarter of the articles screened reported on social media use for participant recruitment (25.1% [104/414]), followed by practical ways to use social media (15.5% [64/414]), and use of social media for content analysis research (13.3% [55/414]). Articles were categorized as celebratory (ie, opportunities for engagement, 72.2% [299/414]), contingent (ie, opportunities and possible limitations, 22.7% [94/414]) and concerned (ie, potentially harmful, 5.1% [21/414]). CONCLUSIONS: Health researchers are increasingly publishing on their use of social media for a range of professional purposes. Although most of the sentiment around the use of social media in health research was celebratory, the uses of social media varied widely. Future research is needed to support health researchers to optimize their social media use.

Paroxysmal nocturnal haemoglobinuria phenotype cells and leucocyte subset telomere length in childhood acquired aplastic anaemia.

The significance of paroxysmal nocturnal haemoglobinuria (PNH(pos) ) cells and leucocyte subset telomere lengths in paediatric aplastic anaemia (AA) is unknown. Among 22 children receiving immunosuppressive therapy (IST) for AA, 73% (16/22) were PNH(pos) , of whom 94% achieved at least a partial response (PR) to IST; 11/16 (69%) achieved complete response (CR). Only 2/6 (33%) PNH(neg) patients achieved PR. PNH(pos) patients were less likely to fail IST compared to PNH(neg) patients (odds ratio 0·033; 95% confidence interval 0·002-0·468; P = 0·012). Children with AA had short granulocyte (P = 7·8 × 10(-9) ), natural killer cell (P = 6·0 × 10(-4) ), naïve T lymphocyte (P = 0·002) and B lymphocyte (P = 0·005) telomeres compared to age-matched normative data.

The Development and Impact of AYA Can-Canadian Cancer Advocacy: A Peer-Led Advocacy Organization for Adolescent and Young Adult Cancer in Canada.

Adolescents and young adults (AYAs; 15-39 years) diagnosed with cancer face disparities in outcomes and survival. Patient advocacy organizations can play a pivotal role in advancing outcomes for underserved health conditions, such as AYA cancer. In 2018 a group of AYA patient advocates founded AYA Canada (later renamed to "AYA Can-Canadian Cancer Advocacy"), a peer-led national organization aimed at improving the experiences and outcomes of Canadian AYAs affected by cancer. The aim of this article is to describe the development and impact of AYA Can. AYA Can was incorporated as a not-for-profit organization in 2021 and became a registered charity in 2023. Since 2018, AYA Can has established a thriving community of practice comprising nearly 300 patients, healthcare providers, researchers, and charitable organizations with an interest in advocacy for AYA cancer. Other activities have included advocacy at academic conferences and on scientific committees, collaboration with scientists to advance AYA cancer research, training the next generation of AYA patient advocates through a "patient ambassador program," and developing a national resource hub to centralize knowledge and information on AYA cancer. Through its work to foster collaboration and amplify patient priorities on a national scale, AYA Can has become a leading voice for AYA cancer advocacy in Canada.

Adverse Childhood Experiences Moderate the Relationship Between Pain and Later Suicidality Severity Among Youth: A Longitudinal High-Risk Cohort Study.

Pain in adolescence can lead to the development of serious mental health issues, including suicidality. This risk may be strengthened among youth exposed to more adverse childhood experiences (ACEs; abuse, neglect, household challenges). This longitudinal study examined the role of ACEs in the relationship between pain and later suicidality onset and severity among a cohort of adolescents at risk for developing mental health problems. Participants were 139 healthy youth (Mage = 13.74 years, standard deviation = 1.56, 64% female) between the ages of 11 to 17 years, recruited based on parental history of depression or anxiety. Youth completed validated measures of internalizing symptoms, ACEs, and pain characteristics at baseline and follow-up diagnostic interviews 9 and/or 18 months later to assess for onset and severity of suicidality. After controlling for demographics, baseline internalizing symptoms, and ACEs, worse pain interference and increased ACEs at baseline predicted increased suicidality severity at follow-up. Moderation analyses revealed that there was a significant interaction between ACEs and pain interference and pain intensity. Increased pain interference (b = 7.65, P < .0001) or intensity (b = 6.96, P = .0003) was only associated with increased suicidality severity at follow-up in youth with high levels of ACEs. This study demonstrates that ACEs strengthen the relationship between pain and later suicidality severity among youth at risk of developing mental health problems. Findings underscore the critical need to adopt a trauma-informed lens to pediatric pain prevention and treatment (eg, screening for ACEs) and for the pain to be on the child's mental health agenda. PERSPECTIVE: This article provides evidence that, while pain is a risk factor for future increased suicidality severity, it is a particularly strong risk factor in youth who experienced increased childhood adversity. These results may help identify youth at greatest risk for suicidality.

Preliminary development of a measure of parental behavioral responses to everyday pains in young children: the PREP.

Introduction: Everyday pains are experienced frequently by young children. Parent responses shape how young children learn about and experience pain. However, research on everyday pains in toddlers and preschoolers is scarce, and no self-report measures of parent responses to their child's pain exist for this age group. Objectives: The objective of this study was to develop a preliminary self-report measure of parent behavioral responses to everyday pains in the toddler and preschool years (the PREP) and examine its relationship with child age, sex, and parent and child distress. Methods: Items for the PREP were based on a behavioural checklist used in a past observational study of caregiver responses to toddler's everyday pains. Parents (N = 290; 93% mothers) of healthy children (47.9% boys) between 18 and 60 months (Mage = 34.98 months, SD = 11.88 months) completed an online survey of 46 initial PREP items, demographic characteristics, and their child's typical distress following everyday pains. An exploratory factor analysis was performed on the PREP items that describe observable actions parents may take in response to their young child's everyday pains. Results: The final solution included 10 items across 3 factors: Distract, Physical Soothe, and Extra Attention and explained 60% of the model variance. All PREP subscales were related to child distress; only Physical Soothe and Extra Attention were related to parent distress. Conclusion: This study was a preliminary step in the development and testing of a new self-report measure of parental responses to everyday pains during early childhood.

Quantitative sensory testing for assessment of somatosensory function in children and adolescents: a scoping review.

Quantitative sensory testing (QST) refers to a group of noninvasive psychophysical tests that examine responses to a range of calibrated mechanical and thermal stimuli. Quantitative sensory testing has been used extensively in adult pain research and has more recently been applied to pediatric pain research. The aims of this scoping review were to map the current state of the field, to identify gaps in the literature, and to inform directions for future research. Comprehensive searches were run in 5 databases. Titles, abstracts, and full texts were screened by 2 reviewers. Data related to the study aims were extracted and analyzed descriptively. A total of 16,894 unique studies were identified, of which 505 were screened for eligibility. After a full-text review, 301 studies were retained for analysis. Date of publication ranged from 1966 to 2023. However, the majority of studies (61%) were published within the last decade. Studies included participants across the developmental trajectory (ie, early childhood to adolescence) and most often included a combination of school-age children and adolescents (49%). Approximately 23% of studies were conducted in healthy samples. Most studies (71%) used only one QST modality. Only 14% of studies reported using a standardized QST protocol. Quantitative sensory testing in pediatric populations is an emerging and rapidly growing area of pain research. Future work is needed using comprehensive, standardized QST protocols to harness the full potential that this procedure can offer to our understanding of pediatric pain.