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BACKGROUND: TikTok is a social media mobile application that is widely used by adolescents, and has the potential to serve as a revolutionary platform for public and mental health discourse, education, and intervention. OBJECTIVE: Our study aimed to describe the content and engagement metrics of the hashtag #teenmentalhealth on TikTok. METHODS: In this study, we: (a) conducted a directed content analysis of the Top 100 TikTok videos tagged with #teenmentalhealth, and (b) collected data on video engagements (views, likes, saves, and shares) and computed view-based engagement rates. RESULTS: The videos collectively garnered 144,320,591 views; 28,289,655 likes; 219,780 comments; 1,971,492 saves; and 478,696 shares. Most of the generated content were from teens and therapists. Engagement metrics revealed strong user engagement rates across user types. The most prevalent content categories represented across videos were personal experience, coping techniques or treatment, humor, interpersonal relationships, and health campaign. The content categories with the highest engagement rates were relatable media representation, health campaign, social isolation, and humor. Only a single video incorporated evidence-based treatment content. CONCLUSION: TikTok facilitates communication and information dissemination on teen mental health. Future research should focus on improving the quality and credibility of digital content while maintaining engagement through creativity, self-expression, and relatability. Use of popular social media platforms and community-engaged research to disseminate evidence-based content may help bridge the translational research gap.
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PURPOSE: Adolescents and Young Adults (AYAs) with cancer are an at-risk group with unique palliative and supportive care needs. Social support in AYAs with cancer is associated with better coping, quality of life, and psychosocial well-being. Here, we extend existing research to examine the sources and types of support received by AYAs with advanced cancer. METHODS: AYAs participated in a semi-structured, 1:1 interview on communication and psychosocial support needs. The present analysis focused on social support experiences for AYAs with advanced cancer. Directed content analysis was used to develop the codebook. Established social support constructs provided a coding framework. We presented our qualitative findings as a code frequency report with quantified frequency counts of all "source of support" and "type of support" codes. We assigned a global "sufficiency of support code" to each AYA. RESULTS: We interviewed 32 AYAs with advanced cancer (Mage = 18, SDage = 3.2, 41% female). Most AYAs identified family (namely, caregivers) as their primary source of support and stated that family universally provided all types of support: emotional, informational, instrumental, and social companionship. They received informational and emotional support from clinicians, and received emotional support and social companionship from healthy peers, cancer peers, and their existing community. One-third of participants were coded as having "mixed support" and described a lack of support in some domains. CONCLUSION: AYAs with advanced cancer described caregivers as their universal source of support, and that other support sources provided support for specific needs. Future research should continue to evaluate social support needs and family-based palliative and supportive care interventions to bolster social support resources in this high-risk group.
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Neoplasias , Pesquisa Qualitativa , Apoio Social , Humanos , Feminino , Masculino , Neoplasias/psicologia , Neoplasias/terapia , Adolescente , Adulto Jovem , Qualidade de Vida/psicologia , Adaptação Psicológica , AdultoRESUMO
Background: Although cystic fibrosis (CF) is a progressive, life-limiting, genetic disease, recent advances have extended survival, allowing persons with CF the time and physical and mental health to form romantic relationships. Previous studies have shown the importance of dyadic coping to positive psychosocial functioning and relationship satisfaction for people with serious chronic illness and their romantic partners, but little work has been done with persons with CF and their partners. The present study examines dyadic coping processes in persons with CF and their romantic partners. Methods: Sixteen adults with moderate to severe CF (Mage=42.3, 43.8% identified as cisgender male, 56.2% identified as cisgender female) and their romantic partners (Mage=43.8, 56.3% identified as cisgender male, 43.7% identified as cisgender female) participated in individual semi-structured interviews focused on topics related to quality of life, communication, and palliative care. We conducted a directed content analysis utilizing Berg and Upchurch's (2007) developmental-contextual theoretical model to examine dyadic coping processes in persons with CF and their romantic partners. Results: Consistent with the developmental-contextual model of dyadic coping, couples described adapting to health and functional declines that occurred over time. Dyads were aligned in their appraisals of illness representation, illness ownership, and perspectives of illness as a shared stressor; they used shared coping mechanisms that included supportive and collaborative actions rather than uninvolved or controlling strategies. Conclusions: We recommend family-based approaches to medical decision-making and goals of care conversations with persons with CF and their partners, aligning those approaches with supportive and collaborative coping configurations. This may improve psychosocial outcomes for patients and their partners.
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BACKGROUND: Individuals with advanced cancer face complex challenges, including prognostic uncertainty and evolving goals of care. Despite the unique psychosocial support needs of adolescents and young adults (AYAs), few studies have specifically examined AYA perspectives of and experiences with advanced cancer. The objective of this study was to describe the experience, needs, and perspectives of pediatric AYAs with advanced cancer. PROCEDURE: We invited English-speaking AYAs (age 14-25 years) who were receiving treatment for advanced cancer at our single tertiary pediatric cancer center to participate in semi-structured interviews. We used directed content analysis for codebook development and then applied in-depth thematic network analysis to describe their perspectives and experiences with advanced cancer. RESULTS: A total of 32 AYAs (86% of approached) completed interviews. A slight majority were male (59%) and non-Hispanic White (56%). Most were diagnosed with leukemia/lymphoma, had recurrent disease (84%), and were a mean 53 months from initial diagnosis. Organizing themes of "not being able to beat this," "not wanting to miss out," and "living each day" generated the global theme "do I have a future?" "Making tough medical decisions," "adjusting life/plans/perspectives," and "decisions about dying" were organized into the global theme "those decisions were really hard." "Feeling like there is no one to talk to," "being away from family and friends," and "feeling like a burden" generated the global theme "I felt very alone." CONCLUSIONS: Pediatric AYAs with advanced cancer describe unique challenges. Psychological support interventions are needed to empower AYAs to navigate difficult decisions and to cope with isolation.
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Leucemia , Neoplasias , Humanos , Masculino , Adolescente , Adulto Jovem , Criança , Feminino , Adulto , Neoplasias/terapia , Neoplasias/psicologia , Prognóstico , Emoções , Tomada de DecisõesRESUMO
BACKGROUND: A cancer diagnosis, especially advanced cancer, interferes with adolescent/young adult (AYA) peer relationships. AYAs increasingly use digital technologies (i.e., social media, video games) as a social instrument; little is known about the role of digital technologies in the AYA cancer experience. The objective of this analysis was to describe the use and impact of digital technologies among AYAs with advanced cancer. PROCEDURE: As part of the "Exploring the Concept of a 'Good Death'" study, semi-structured interviews were conducted with 32 English-speaking AYAs (14-25 years) with advanced cancer (relapsed/refractory disease, estimated survival <50%). Interviews were audio recorded, deidentified, and transcribed verbatim. Questions focused on communication and sources of psychosocial support. Directed content analysis was used for codebook creation. Three reviewers completed transcript coding and reconciled discrepancies. Thematic analysis identified hierarchical themes. The present analysis focused on the specific theme of "digital technologies as a support mechanism." RESULTS: When asked about sources of support, social media and multiplayer online games were most often recognized by AYAs. Three themes emerged regarding the role of digital technologies: distraction, maintaining existing peer support, and connecting with peers with cancer. Two AYAs acknowledged negative consequences of social media. CONCLUSIONS: AYAs with advanced cancer cite digital technologies as a mechanism for maintaining and seeking peer support. Digital technologies may be leveraged to provide psychosocial support for AYAs with advanced cancer.
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Tecnologia Digital , Neoplasias , Adolescente , Humanos , Neoplasias/psicologia , Neoplasias/terapia , Grupo Associado , Adulto JovemRESUMO
OBJECTIVES: There is a paucity of research on the impact of cancer treatment on the health-related quality of life (HRQOL) of adolescent and young adult (AYA) patients with cancer. Patient-reported outcomes (PROs) are self-report measures used to assess HRQOL and symptom burden. The extent to which PROs have been included in trials that include common AYA cancer types has not been previously assessed. METHODS: Therapeutic phase 3 trials among common AYA cancer types (Hodgkin lymphoma, non-Hodgkin lymphoma, acute lymphoblastic leukemia, sarcomas, and germ cell tumors) initiated between 2007 and 2020 were identified on ClinicalTrials.gov. The proportions and characteristics of trials including a PRO endpoint were assessed. For comparison with an older population, the proportion of breast and colorectal therapeutic phase 3 trials including PRO endpoints were assessed. RESULTS: Eighty-seven studies met the inclusion criteria. Overall, 20.7% of therapeutic phase 3 AYA trials included a PRO endpoint, and only one trial published PRO data. Germ cell tumors (42.9%) and non-Hodgkin lymphoma (40%) trials had the highest proportions of PRO inclusion. The European Organization for Research and Treatment of Cancer generic, cancer-specific quality of life questionnaire was the most commonly used PRO measure; nevertheless, the measures used varied within and between cancer types. The proportion of trials including a PRO endpoint did not change significantly between 2007 to 2013 and 2014 to 2020 (18.6% vs 22.7%, P=.79). CONCLUSIONS: Few therapeutic phase 3 AYA cancer trials include PRO endpoints, fewer publish PRO data, and there is no homogeneity in the measures administered. Therapeutic trials represent an underused opportunity to capture PRO data in the AYA population with the goal of improving HRQOL outcomes.
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Ensaios Clínicos Fase III como Assunto , Neoplasias , Medidas de Resultados Relatados pelo Paciente , Adolescente , Adulto , Feminino , Humanos , Masculino , Neoplasias/terapia , Adulto JovemRESUMO
OBJECTIVE: In adolescents and young adults (AYAs) with cancer, we examined (1) the distribution and type of traumatic events (TEs) experienced prior to baseline assessment and (2) how a resilience intervention, Promoting Resilience in Stress Management (PRISM), impacted changes in patient-reported outcomes (PROs) for AYAs with and without TEs. METHODS: AYAs (12-25 years) within 1-10 weeks of diagnosis of new malignancy or ever diagnosed with advanced cancer were enrolled and randomly assigned to usual care (UC) with or without PRISM. To assess TEs, we screened medical records for traditionally defined adverse childhood experiences (ACEs) and medical traumatic events. Age-validated PROs assessed resilience, benefit-finding, hope, generic health-related quality of life (QoL), cancer-specific QoL, depression, and anxiety at enrollment and 6 months later. We calculated effect sizes (Cohen's d) for PRISM vs. UC effect on PRO score change at 6 months for 1+ TEs and 0 TE groups. RESULTS: Ninety-two AYAs enrolled and completed baseline surveys (44-UC, 48-PRISM; N = 74 at 6 months, 38-UC, 36-PRISM); 60% experienced 1+ TEs. PROs at baseline were similar across groups. PRISM's effect on score change was greater (Cohen's d ≥ 0.5) for the 1+ TE group on domains of benefit-finding and hope; and similar (d < 0.5) on domains of resilience, depression, anxiety, and both generic and cancer-specific QoL. CONCLUSIONS: In AYAs with cancer, TEs occurred at similar rates as the general population. PRISM may be particularly helpful for improving benefit-finding and hope for those who have experienced TEs.
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Experiências Adversas da Infância/psicologia , Neoplasias/psicologia , Qualidade de Vida/psicologia , Resiliência Psicológica/ética , Estresse Psicológico/psicologia , Ferimentos e Lesões/psicologia , Adolescente , Adulto , Criança , Feminino , Humanos , Masculino , Adulto JovemRESUMO
Mobile health (mHealth) technologies have provided an innovative platform for the deployment of health care diagnostics, symptom monitoring, and prevention and intervention programs. Such health-related smartphone apps are universally accepted by patients and providers with over 50 million users worldwide. Despite the rise in popularity and accessibility among consumers, the evidence base in support of health-related apps has fallen well behind the rapid pace of industry development. To bridge this evidence gap, researchers are beginning to consider how to best apply evidence-based research standards to the systematic synthesis of the mHealth consumer market. In this viewpoint, we argue for the adoption of a "hybrid model" that combines a traditional systematic review with a systematic search of mobile app download platforms for health sciences researchers interested in synthesizing the state of the science of consumer apps. This approach, which we have successfully executed in a recent review, maximizes the benefits of traditional and novel approaches to address the essential question of whether popular consumer mHealth apps work.
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Aplicativos Móveis , Telemedicina , Terapia Comportamental , Atenção à Saúde , HumanosRESUMO
BACKGROUND: The "Promoting Resilience in Stress Management" intervention is a skills-based, early palliative care intervention with demonstrated efficacy in adolescents and young adults with cancer. AIM: Utilizing data from a randomized clinical trial of Promoting Resilience in Stress Management versus Usual Care, we examined whether response to Promoting Resilience in Stress Management differed across key sociodemographic characteristics. DESIGN: Adolescents and young adults with cancer completed patient-reported outcome measures of resilience, hope, benefit-finding, quality of life, and distress at enrollment and 6 months. Participants were stratified by sex, age, race, and neighborhood socioeconomic disadvantage based on home address (Area Deprivation Index scores with 8-10 = most disadvantaged). Differences in the magnitude of effect sizes between stratification subgroups were noted using a conservative cutoff of d > 0.5. SETTING/PARTICIPANTS: Participants were 12 to 25 years old, English-speaking, and receiving cancer care at Seattle Children's Hospital. RESULTS: In total, 92 adolescents and young adults (48 Promoting Resilience in Stress Management, 44 Usual Care) completed baseline measures. They were 43% female, 73% 12 to 17 years old, 64% White, and 24% most disadvantaged. Effect sizes stratified by sex, age, and race were in an expected positive direction and of similar magnitude for the majority of outcomes with some exceptions in magnitude of treatment effect. Those who lived in less disadvantaged neighborhoods benefited more from Promoting Resilience in Stress Management, and those living in most disadvantaged neighborhoods benefited less. CONCLUSION: The "Promoting Resilience in Stress Management" intervention demonstrated a positive effect for the majority of outcomes regardless of sex, age, and race. It may not be as helpful for adolescents and young adults living in disadvantaged neighborhoods. Future studies must confirm its generalizability and integrate opportunities for improvement by targeting individual needs.
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Neoplasias/prevenção & controle , Neoplasias/psicologia , Cuidados Paliativos , Resiliência Psicológica , Estresse Psicológico/prevenção & controle , Estresse Psicológico/psicologia , Adolescente , Criança , Feminino , Humanos , Masculino , Psicoterapia , Qualidade de Vida , Fatores Socioeconômicos , Adulto JovemRESUMO
An emerging trend in youth psychotherapy is measurement-based care (MBC): treatment guided by frequent measurement of client response, with ongoing feedback to the treating clinician. MBC is especially needed for treatment that addresses internalizing and externalizing problems, which are common among treatment-seeking youths. A very brief measure is needed, for frequent administration, generating both youth- and caregiver-reports, meeting psychometric standards, and available at no cost. We developed such a measure to monitor youth response during psychotherapy for internalizing and externalizing problems. Across 4 studies, we used ethnically diverse, clinically relevant samples of caregivers and youths ages 7-15 to develop and test the Behavior and Feelings Survey (BFS). In Study 1, candidate items identified by outpatient youths and their caregivers were examined via an MTurk survey, with item response theory methods used to eliminate misfitting items. Studies 2-4 used separate clinical samples of youths and their caregivers to finalize the 12-item BFS (6 internalizing and 6 externalizing items), examine its psychometric properties, and assess its performance in monitoring progress during psychotherapy. The BFS showed robust factor structure, internal consistency, test-retest reliability, convergent and discriminant validity in relation to three well-established symptom measures, and slopes of change indicating efficacy in monitoring treatment progress during therapy. The BFS is a brief, free youth- and caregiver-report measure of internalizing and externalizing problems, with psychometric evidence supporting its use for MBC in clinical and research contexts.
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Comportamento Infantil/psicologia , Emoções/fisiologia , Psicometria/métodos , Psicoterapia/métodos , Adolescente , Criança , Feminino , Humanos , Estudos Longitudinais , Masculino , Reprodutibilidade dos Testes , Inquéritos e Questionários , Resultado do TratamentoRESUMO
The aim of this analysis was to explore intra-family longitudinal relationships in psychosocial well-being among adolescent and young adults (AYAs, Mage = 17, SD = 2.1) with cancer and their mothers using data from a multi-site, prospective, survey-based study. AYA-mother dyads (n = 14 dyads) completed validated patient reported outcome (PRO) measures of self-perceived resilience [Connor-Davidson resilience scale (CD-RISC-10)] and distress [Kessler-6 psychological distress scale (K6)] at baseline (14-60 days following diagnosis) and follow-up (3-6 months later). Higher AYA distress predicted better maternal resilience, whereas higher maternal distress predicted worse AYA resilience. Thus, processes of resilience between AYAs and their mothers may differ.
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Mães/psicologia , Neoplasias/psicologia , Angústia Psicológica , Resiliência Psicológica , Adolescente , Adulto , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Mães/estatística & dados numéricos , Neoplasias/terapia , Estudos Prospectivos , Inquéritos e Questionários , Adulto JovemRESUMO
OBJECTIVE: Adolescents and young adults (AYAs) with cancer are at high risk of negative psychosocial outcomes. Promoting Resilience in Stress Management (PRISM), a novel, brief, skill-based intervention, has demonstrated efficacy in improving psychosocial well-being for AYAs. We utilized data from a recent randomized trial of PRISM versus usual care (UC) to categorize and explore group differences in change trajectories of patient reported outcomes (PROs) over time. METHODS: One hundred English-speaking AYAs (aged 12-25 years old) with cancer were randomized to PRISM versus UC. At enrollment and 6 months later, AYAs completed validated PROs measuring resilience (Connor-Davidson Resilience Scale [CDRISC-10]), hope (Hope Scale), benefit finding (Benefit and Burden Scale for Children), cancer-specific quality of life (Pediatric Quality of Life [PedsQL] Cancer Module), and distress (Kessler-6). Patient response trajectories were categorized as "improved," "consistently well," "consistently at risk," or "deteriorated" using minimal clinically important differences (MCIDs) or established measure cutoffs for all PROs. Positive response trajectories consisted of the first two categories ("improved" and "consistently well"), and negative response trajectories consisted of the latter two categories ("consistently at risk" and "deteriorated"). RESULTS: Across all PROs, more patients in the PRISM arm "improved" in psychosocial well-being over time, and fewer PRISM recipients "deteriorated" over time. Across all PROs, a greater proportion of PRISM participants (vs UC) experienced positive response trajectories. Across all PROs, a greater proportion of UC participants experienced negative response trajectories. CONCLUSIONS: PRISM shows evidence of both a prevention effect and an intervention effect. Thus, PRISM may serve as a viable prevention and early intervention model for psychosocial care.
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Neoplasias/psicologia , Qualidade de Vida/psicologia , Resiliência Psicológica , Estresse Psicológico/prevenção & controle , Adaptação Psicológica , Adolescente , Adulto , Cuidadores/psicologia , Feminino , Esperança , Humanos , Masculino , Neoplasias/complicações , Apoio Social , Estresse Psicológico/etiologia , Estresse Psicológico/psicologia , Adulto JovemRESUMO
We aimed to explore the predictive value of screening for distress alone, hope alone, or a combination of both. In a multicenter prospective study, 37 English-speaking adolescents and young adults with cancer and 40 parents completed validated instruments at diagnosis ("baseline") and 3-6 months later ("follow-up"). Correlated regression models described associations. Within each instrument, baseline and follow-up scores were associated. However, only a composite hope/distress score predicted all three patient-centered outcomes. Multidimensional screens incorporating positive and negative psychosocial constructs may predict patient-centered outcomes better than isolated, single-construct instruments.
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Esperança , Neoplasias/psicologia , Qualidade de Vida/psicologia , Estresse Psicológico/diagnóstico , Adolescente , Adulto , Feminino , Seguimentos , Humanos , Masculino , Neoplasias/diagnóstico , Estudos Prospectivos , Adulto JovemRESUMO
K+ is widely used by plant cells, whereas Na+ can easily reach toxic levels during plant growth, which typically occurs in saline environments; however, the effects and functions in the chloroplast have been only roughly estimated. Traditionally, the occurrence of ionic fluxes across the chloroplast envelope or the thylakoid membranes has been mostly deduced from physiological measurements or from knowledge of chloroplast metabolism. However, many of the proteins involved in these fluxes have not yet been characterized. Based on genomic and RNA sequencing (RNA-seq) analyses, we present a comprehensive compilation of genes encoding putative ion transporters and channels expressed in the chloroplasts of the moss Physcomitrella patens, with a special emphasis on those related to Na+ and K+ fluxes. Based on the functional characterization of nhad mutants, we also discuss the putative role of NHAD transporters in Na+ homeostasis and osmoregulation of this organelle and the putative contribution of chloroplasts to salt tolerance in this moss. We demonstrate that NaCl does not affect the chloroplast functionality in Physcomitrella despite significantly modifying expression of ionic transporters and cellular morphology, specifically the chloroplast ultrastructure, revealing a high starch accumulation. Additionally, NHAD transporters apparently do not play any essential roles in salt tolerance.
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Bryopsida/genética , Bryopsida/metabolismo , Cloroplastos/metabolismo , Proteínas de Plantas/metabolismo , Trocadores de Sódio-Hidrogênio/metabolismo , Bryopsida/citologia , Cloroplastos/genética , Perfilação da Expressão Gênica , Genoma de Planta , Proteínas de Fluorescência Verde/genética , Homeostase , Concentração de Íons de Hidrogênio , Transporte de Íons , Mutação , Proteínas de Plantas/genética , Plantas Geneticamente Modificadas , Potássio/metabolismo , Salinidade , Sódio/metabolismo , Trocadores de Sódio-Hidrogênio/genéticaRESUMO
BACKGROUND: During the COVID-19 pandemic, Twitter (recently rebranded as "X") was the most widely used social media platform with over 2 million cancer-related tweets. The increasing use of social media among patients and family members, providers, and organizations has allowed for novel methods of studying cancer communication. OBJECTIVE: This study aimed to examine pediatric cancer-related tweets to capture the experiences of patients and survivors of cancer, their caregivers, medical providers, and other stakeholders. We assessed the public sentiment and content of tweets related to pediatric cancer over a time period representative of the COVID-19 pandemic. METHODS: All English-language tweets related to pediatric cancer posted from December 11, 2019, to May 7, 2022, globally, were obtained using the Twitter application programming interface. Sentiment analyses were computed based on Bing, AFINN, and NRC lexicons. We conducted a supplemental nonlexicon-based sentiment analysis with ChatGPT (version 3.0) to validate our findings with a random subset of 150 tweets. We conducted a qualitative content analysis to manually code the content of a random subset of 800 tweets. RESULTS: A total of 161,135 unique tweets related to pediatric cancer were identified. Sentiment analyses showed that there were more positive words than negative words. Via the Bing lexicon, the most common positive words were support, love, amazing, heaven, and happy, and the most common negative words were grief, risk, hard, abuse, and miss. Via the NRC lexicon, most tweets were categorized under sentiment types of positive, trust, and joy. Overall positive sentiment was consistent across lexicons and confirmed with supplemental ChatGPT (version 3.0) analysis. Percent agreement between raters for qualitative coding was 91%, and the top 10 codes were awareness, personal experiences, research, caregiver experiences, patient experiences, policy and the law, treatment, end of life, pharmaceuticals and drugs, and survivorship. Qualitative content analysis showed that Twitter users commonly used the social media platform to promote public awareness of pediatric cancer and to share personal experiences with pediatric cancer from the perspective of patients or survivors and their caregivers. Twitter was frequently used for health knowledge dissemination of research findings and federal policies that support treatment and affordable medical care. CONCLUSIONS: Twitter may serve as an effective means for researchers to examine pediatric cancer communication and public sentiment around the globe. Despite the public mental health crisis during the COVID-19 pandemic, overall sentiments of pediatric cancer-related tweets were positive. Content of pediatric cancer tweets focused on health and treatment information, social support, and raising awareness of pediatric cancer.
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BACKGROUND: Adolescents and young adults (AYAs) with cancer are at risk of poor psychosocial outcomes. AYAs grew up with the internet and digital technology, and mobile Health (mHealth) psychosocial interventions have the potential to overcome care access barriers. OBJECTIVE: This pilot randomized controlled trial (RCT) aimed to establish the feasibility, acceptability, and preliminary efficacy of a fully automated mobile app version of the Promoting Resilience in Stress Management intervention (mPRISM). Promoting Resilience in Stress Management is an evidence-based intervention developed in collaboration with AYAs, based on stress and coping theory, resilience theory, and evidence-based coping strategies. We hypothesized that mPRISM would be feasible, acceptable, and appropriate. METHODS: This is a parallel, 2-arm, single-site pilot RCT with a waitlist control design. The study will recruit 80 AYAs with cancer from a clinic. Eligible AYAs are aged 12 to 25 years, within 12 months of a new cancer diagnosis, receiving chemotherapy or radiation therapy, speak, read, or write in English, and are cognitively able to participate in study procedures. Recruitment by clinical research coordinators will occur remotely by phone, video, or text. Participants will be randomized to psychosocial usual care (UC) alone or UC plus mPRISM for an 8-week intervention period, and will remain unblinded to study condition. Enrolled participants will complete surveys at baseline before randomization, 8 weeks, and 3-month follow-up. Using a waitlist design, the UC arm will receive mPRISM upon completion of 3-month follow-up surveys. Those in the UC arm will complete 2 additional measurement points at immediate posttreatment and 3 months later. The primary outcomes of interest are feasibility, defined as ≥60% enrollment and ≥70% retention (ie, percentage of participants who completed the study), and "feasibility, acceptability, and appropriateness" as defined by cut-off scores ≥4/5 on 3 brief validated implementation outcome measures (feasibility of implementation measure, acceptability of intervention measure [AIM], intervention appropriateness measure [IAM]). We will apply top-box scoring for the implementation measures. Exploratory outcomes of interest include patient-reported health-related quality of life, resilience, distress, anxiety, depression, pain, and sleep. We will conduct an intention-to-treat analysis to compare the outcomes of the mPRISM arm versus the control arm with covariate-adjusted regression models. We will summarize individual digital usage metrics using descriptive statistics. RESULTS: Since September 2023, we have enrolled 20 participants and recruitment is ongoing. CONCLUSIONS: Although our previous work suggests AYAs with cancer are interested in mHealth psychosocial interventions, such interventions have not yet been sufficiently evaluated or implemented among AYA oncology patients. mPRISM may serve as a potential mHealth intervention to fill this gap. In this study, we will test the feasibility, acceptability, and preliminary efficacy of mPRISM. This work will inform future larger-scale RCTs powered for efficacy outcomes. TRIAL REGISTRATION: ClinicalTrials.gov NCT05842902; https://clinicaltrials.gov/study/NCT05842902. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/57950.
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Aplicativos Móveis , Neoplasias , Resiliência Psicológica , Estresse Psicológico , Humanos , Adolescente , Projetos Piloto , Adulto Jovem , Neoplasias/terapia , Neoplasias/psicologia , Estresse Psicológico/terapia , Masculino , Feminino , Adulto , Criança , Telemedicina , Qualidade de Vida/psicologiaRESUMO
BACKGROUND: The National Cancer Institute has catalyzed research in adolescent and young adult (AYA) oncology by identifying the need for supportive care intervention studies and psychometrically robust health-related quality of life (HRQOL) measures. We evaluated progress toward these goals (1) examining changes in the number of registered psychosocial intervention trials being conducted with AYAs over time; (2) determining what domains of HRQOL were assessed across these intervention trials; and (3) identifying the most frequently used measures of HRQOL. METHODS: We conducted a systematic review of psychosocial intervention trials for AYAs registered on ClinicalTrials.gov from 2007 to 2021. Following identification of relevant trials, we extracted the outcome measures and determined whether they were measures of HRQOL and which HRQOL domains were evaluated. Descriptive statistics were used to summarize trial and outcome characteristics. RESULTS: We identified 93 studies that met our inclusion criteria and 326 HRQOL outcomes across studies. The average number of clinical trials conducted annually has increased from 2 (SD = 1) during the years of 2007-2014 to 11 (SD = 4) during the years of 2015-2021. 19 trials (20.4%) did not include a measure of HRQOL. HRQOL measures varied widely, and most evaluated psychological and physical domains. Of the 9 measures used 5 + times, none were developed to cover the full AYA age spectrum. CONCLUSIONS: This review demonstrated that the number of AYA psychosocial intervention trials conducted annually has increased. However, it also revealed several important areas for additional work including: (1) ensuring psychosocial trials include HRQOL measures; (2) increasing the frequency of evaluation of underrepresented domains of HRQOL (e.g., body image, fertility/sexuality and spiritual); and (3) improving the validity and standardization of measures used to evaluate domains of HRQOL across AYA-focused trials to improve the field's ability to compare the impact of different psychosocial interventions on HRQOL outcomes.
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Sobreviventes de Câncer , Neoplasias , Humanos , Adolescente , Adulto Jovem , Qualidade de Vida/psicologia , Intervenção Psicossocial , Projetos de Pesquisa , Neoplasias/terapia , Neoplasias/psicologiaRESUMO
Social Anxiety Disorder is highly prevalent among children and leads to poor long-term outcomes if left untreated. Theoretical models of anxiety differ in whether children with Social Anxiety Disorder experience objective social skills deficits, negative self-interpretation biases, or some combination of the two. This pilot study evaluated evidence in support of the "deficit" and "bias" models. Approval was obtained from the ethics committee of a large private university in Cambridge, MA, USA, and data collection was completed in 2015. We recruited 68 parent-child dyads for a study in which anxious children (with Social Anxiety Disorder) and non-anxious children underwent a child-adapted version of the Trier Social Stress Test. Children were aged 8-14, 67.6% male, and self-identified as 54.4% White, 7.4% Black, 4.4% Latinx, 13.2% Asian, 14.7% multiethnic, and 5.9% "other" or no response. Performance ratings were obtained from children, their parents, and external observers. We found evidence of both specific social skills deficits and self-appraisal biases in anxious children. Anxious children struggled with signs of physical discomfort but not with actual speech content. Although children were generally able to accurately evaluate their social performance, older anxious children were most self-critical. Parents were similarly accurate in appraisals of their children's social performance. Anxious children responded favorably to positive feedback with improved self-evaluations of performance and decreased anxiety. Findings suggest that a comprehensive "integrated" theoretical model of Social Anxiety Disorder should include both skills deficits and self-appraisal biases.