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ABSTRACT: Chronic musculoskeletal pain (CMP) and coexisting mental health conditions impact young people; however, little is known about their lived and care experiences. In a prospectively registered systematic review with qualitative evidence synthesis (PROSPERO: CRD42022369914), we explored the following: (1) lived physical, psychological, and social experiences; and (2) care experiences/preferences of young people living with CMP and mental health conditions. Inclusion criteria: studies using qualitative methods; participants aged 16 to 24 years with CMP and coexisting mental health condition(s); phenomenon explored included lived and/or care experiences. Seven databases were searched (inception to 19-May-2024), study quality was assessed, data were extracted and analysed thematically, and GRADE-CERQual was used to assess confidence in findings. Twenty-two studies (23 reports) were included (>239 participants, 82% women). Lived experiences yielded 4 themes (9 findings): 2-way relationship between CMP and mental health (2 findings, low to moderate confidence); psychosocial implications of CMP (3 findings, very low-moderate confidence); uncertainty about future (2 findings, low-moderate confidence); coping with CMP and mental health conditions (2 findings, low-moderate confidence). Care experiences/preferences yielded 3 themes (8 findings): navigating healthcare systems (2 findings, moderate confidence); receiving appropriate care (3 findings, very low-moderate confidence); point-of-care experiences and care preferences (3 findings, very low-moderate confidence). Chronic musculoskeletal pain and mental health conditions are interconnected, significantly impacting young people's lives, identities, and socialisation, yet services for CMP and mental health are often inadequate and poorly integrated. The mechanisms and interplay of CMP and mental health require deeper exploration, including how young people may be better supported with personalised, holistic, developmentally and/or life-stage-appropriate integrated care.
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Importance: Fear of cancer recurrence is common among survivors of adult-onset cancer and associated with increased distress, functional impairment, and health care utilization. However, little is known about the prevalence and risk factors of fear of cancer recurrence among adult survivors of childhood cancer who are also at high risk for subsequent malignant neoplasms. Objective: To characterize the prevalence of and risk factors for clinically significant fear of cancer recurrence in adult survivors of childhood cancer. Design, Setting, and Participants: This cross-sectional investigation included participants recruited from the Childhood Cancer Survivor Study, a retrospective cohort study of long-term childhood cancer survivors treated at 31 institutions between 1970 and 1999 across North America. Participants were recruited and completed psychosocial measures via online survey between October 2018 and April 2019. Cancer and treatment-related variables were abstracted from medical records. Data were analyzed from May 2023 to July 2024. Main Outcomes and Measures: Clinically significant fear of cancer recurrence was assessed via the Fear of Cancer Recurrence Inventory-Short Form. Poisson regression models estimated prevalence ratios (PRs) with 95% CIs adjusted for age and sex to examine the associations of demographic, disease, treatment, and psychosocial variables with fear of cancer recurrence. Results: The final sample included 229 adult survivors of childhood cancer (115 female [50.2%]; mean [SD] age, 39.6 [9.9] years; mean [SD] time since diagnosis, 31.7 [8.4] years). Among survivors, 38 (16.6%; 95% CI, 11.6%-21.6%) reported clinically significant fear of cancer recurrence, and an additional 36 (15.7%) reported high fear of cancer recurrence. Clinically significant fear of cancer recurrence was associated with unemployment (PR, 2.5; 95% CI, 1.3-4.8), presence of neurologic chronic health conditions (PR, 3.3; 95% CI, 1.8-6.1), treatment with pelvic radiation (PR, 2.9; 95% CI, 1.5-5.6), and amputation or limb sparing surgery (PR, 2.4; 95% CI, 1.2-4.9). Higher risk of clinically significant fear of cancer recurrence was also associated with having either elevated anxiety or depression (PR, 2.6; 95% CI, 1.2-5.9), having both elevated (PR, 3.2; 95% CI, 1.2-8.4), and perceived poor health status (PR, 3.0; 95% CI, 3.1-9.7). Conclusions and Relevance: Decades following treatment, one-third of childhood cancer survivors in this study reported elevated fear their cancer will recur or a subsequent malignant neoplasm will develop. Findings suggest that fear of cancer recurrence should be routinely screened, and clinically significant symptoms intervened upon as a part of survivorship care.
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Supervivientes de Cáncer , Miedo , Recurrencia Local de Neoplasia , Humanos , Supervivientes de Cáncer/psicología , Supervivientes de Cáncer/estadística & datos numéricos , Femenino , Masculino , Miedo/psicología , Adulto , Estudios Transversales , Recurrencia Local de Neoplasia/psicología , Recurrencia Local de Neoplasia/epidemiología , Estudios Retrospectivos , Neoplasias/psicología , Neoplasias/epidemiología , Factores de Riesgo , Persona de Mediana Edad , Prevalencia , NiñoRESUMEN
Painimation, a novel digital pain assessment tool, allows patients to communicate their pain quality, intensity, and location using abstract animations and a paintable body image. This study determined the construct validity of pain animations and body image measures by testing correlations with validated pain outcomes in adults with sickle cell disease (SCD). Analyses used baseline data from a multisite randomized trial of 359 adults with SCD and chronic pain. Participants completed questionnaires on demographics, pain severity, frequency and interference, catastrophizing, opioid use, mood and quality of life, plus the Painimation app. Participants were categorized by selected pain animations, and were split into groups based on the proportion of painted body image. The "shooting" pain animation and greater body image scores associated with poorer pain outcomes in univariate analyses, except "happy" mood days. Potential confounding was evaluated by age, gender, race, education, disability, site, depression, and anxiety. Only depression scores significantly covaried in multivariate models, accounting for the effect of greater body image score and shooting animation on all outcomes except daily pain intensity. Both pain animations and body image measures correlated with validated pain outcomes, quality of life and mental health measures. This demonstrates animations and body image data can assess SCD pain severity, potentially with more accuracy than a 0-10 scale. In exploratory analyses, depression scores accounted for the association between Painimation and other pain outcomes. Future research will explore whether Painimation can differentiate biological and psychosocial pain components. PERSPECTIVE: This article presents the preliminary construct validity of Painimation in sickle cell disease (SCD) by examining the associations of "pain animations" and body area image data with daily e-diary and traditional self-report pain outcomes.
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Despite the significant burden of chronic pain in sickle cell disease (SCD), non-pharmacological approaches to manage pain in SCD are lacking. Behavioral interventions incorporating digital cognitive-behavioral therapy CBT) for pain should be compared to available education efforts. To compare a CBT intervention tailored for adults with SCD to a digital pain/SCD education intervention (Education) on improving pain and associated symptoms. Multisite randomized comparative effectiveness trial. Seven comprehensive SCD centers and virtual recruitment through community organizations in the United States. Adults (age 18+) with SCD-related chronic pain and/or daily opioid use randomized to CBT or Education. Over 12 weeks, the CBT arm received an app-based intervention for pain management; the Education arm received digital pain/SCD education. Both groups received interactive chatbot lessons plus personalized health coach support. Changes in pain interference scale (primary); and other patient-reported outcomes (secondary), including pain intensity, depression, anxiety, quality of life, and self-efficacy over 6 months. 453 participants completed screening, 359 (79%) were randomized to CBT (n=181) or Education (n=178), 332 (92%) were Black African American, 238 (66.3%) female. At 6 months, 250 (70%) participants (n=125 per arm) completed follow-up assessments, 93 (26%) missed their follow-up window, 16 (4%) withdrew. Engagement with the chatbot content was variable (76% connected, 48% completed ≥1 lesson). However, 80% of participants completed ≥1 session with a health coach via phone, video, or text. The 6 month change in pain interference for CBT (-2.13; 95% CI, -3.42 to -0.84) and Education (-2.66; 95%CI, -3.97 to -1.36) was not significantly different (mean difference: 0.54; 95%CI, -1.30 to 2.37; *P=*0.57). Daily pain intensity ratings did not change for either group. There were no between-arm differences in depression, anxiety, and quality of life. CBT and Education did not differ in their effect on pain and mental health in SCD when combined with health coaching. Variable engagement with digital components and high engagement with health coaching may explain the lack of between-group differences, but these findings also provide insights into delivering digital interventions in racial minority and hard-to-reach populations. Trial Registration: ClinicalTrials.gov NCT04419168.
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Background: Loneliness, the perception that one's social relationships do not meet the desire for social connection, is a risk factor for poor mental and physical health. Adolescents with chronic pain experience higher rates of peer loneliness which persists over time. Previous studies used a single loneliness measure, limiting our understanding of the nature of their loneliness. This study describes the types of peer loneliness (intimate, relational, and collective) experienced by these adolescents and the impact that peer loneliness has on pain-related outcomes. Methods: A cross-sectional online survey was completed by 128 Canadian adolescents aged 12-18 years who experienced pain for at least 3 months. Validated measures captured demographics, pain-related characteristics, types of peer-related loneliness, measures of social well-being, and mental and physical health outcomes. Results: Friedman's tests of z-scores indicate that participants equally experienced dyadic, relational, and collective peer loneliness. MANCOVA revealed that those who identify as Black were lonelier after controlling for socioeconomic status. Multiple regression showed that loneliness was a robust predicter of worse scores on social well-being and mental health outcomes with males and females equally impacted by loneliness. Despite moderate correlations between loneliness and pain interference and pain intensity, loneliness did not predict school absences, suggesting that loneliness' influence on physical pain outcomes may be temporally earlier (e.g. contribute to pain chronification). Conclusions: Peer loneliness among adolescents with chronic pain negatively impacts their social well-being and mental health outcomes. Interventions addressing loneliness to target all three types of peer loneliness may be key to improving pain-related outcomes.
Contexte: La solitude, c'est-à-dire la perception que les relations sociales d'une personne ne répondent pas à son désir de lien social, est un facteur de risque pour la santé mentale et physique. Les adolescents souffrant de douleur chronique éprouvent des taux plus élevés de solitude liée aux pairs, qui persistent dans le temps. Les études antérieures se sont limitées à une seule mesure de la solitude, ce qui restreint notre compréhension du phénoméne. Cette étude décrit les types de solitude liée aux pairs (intime, relationnelle et collective) vécus par ces adolescents et l'effet de cette solitude liée aux pairs sur les résultats en matiére de douleur.Méthodes: Une enquête transversale en ligne a été réalisée auprés de 128 adolescents canadiens âgés de 12 à 18 ans ayant éprouvé de la douleur pendant au moins trois mois. Des instruments de mesure validés ont été utilisées pour recueillir des données sur les caractéristiques démographiques, les aspects de la douleur, les types de solitude liée aux pairs, ainsi que le bien-être social et les résultats en matière de santé mentale et physique.Résultats: Les tests de Friedman sur les z-scores indiquent que les participants ont souffert de solitude dyadique, relationnelle et collective liée aux pairs de manière équivalente. La MANCOVA a révélé que ceux qui s'identifiaient comme Noirs éprouvaient une solitude plus prononcée, même après avoir tenu compte du statut socio-économique. L'analyse de régression multiple a démontré que la solitude était un prédicteur robuste de résultats défavorables en matière de bien-être social et de santé mentale, touchant aussi bien les hommes que les femmes. Bien que des corrélations modérées aient été observées entre la solitude et l'interférence de la douleur ainsi que l'intensité de la douleur, la solitude n'a pas été un prédicteur des absences scolaires. Cela indique que l'influence de la solitude sur les résultats liés à la douleur physique pourrait être antérieure dans le temps (contribuant par exemple à la chronification de la douleur).Conclusion: La solitude liée aux pairs chez les adolescents souffrant de douleur chronique a un effet négatif sur leur vie sociale, ainsi que sur leur bien-être social et leurs résultats en matiére de santé mentale. Les interventions visant à réduire la solitude en ciblant les trois types de solitude liée aux pairs pourraient être essentielles pour améliorer les résultats en matiére de douleur.
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Young children receiving outpatient cancer care are vulnerable to undermanaged pain. App-based solutions that provide pain treatment advice to parents in real-time and in all environments may improve access to quality pain care. We used a parent co-design approach involving iterative rounds of user testing and software modification to develop a usable Pain Caregiver Resource (PainCaRe) real-time pediatric cancer pain management app. Parents of children (2-11 years) with cancer completed three standardized modules using a PainCaRe prototype. App usability and acceptability were evaluated using the validated System Usability Scale and a thematic analysis of app testing sessions and interviews. Iterative testing sessions were conducted until data saturation. Interview themes were synthesized into action items that guided revisions to PainCaRe and additional testing rounds were conducted as necessary. Twenty-two parents participated in three testing cycles. Overall, parents described PainCaRe as an acceptable and potentially clinically useful pain management tool. Mean system usability scores were in the acceptable scale range during each testing cycle. Usability issues identified and resolved included those related to software malfunction, complicated app navigation logic, lack of clarity on pain assessment questions, and the need for pain management advice specifically tailored to child developmental stage. Using co-design methods, the PainCaRe cancer pain management app was successfully refined for its acceptability and utility to parents. Next steps will include a PainCaRe pilot study before evaluating the impact of the app on younger children's pain outcomes in a randomized controlled trial.
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BACKGROUND: Self-guided Internet-based cognitive behavior therapy (iCBT) for migraine interventions could improve access to care, but there is poor evidence of their efficacy. METHODS: A three-arm randomized controlled trial compared: iCBT focused on psychoeducation, self-monitoring and skills training (SPHERE), iCBT focused on identifying and managing personal headache triggers (PRISM) and a waitlist control. The primary treatment outcome was a ≥ 50% reduction in monthly headache days at 4 months post-randomization. RESULTS: 428 participants were randomized (mean age = 30.1). 240 participants (56.2%) provided outcome data at 4 months. Intention-to-treat (ITT) analysis with missing data imputed demonstrated that the proportion of responders with a ≥ 50% reduction was similar between combined iCBTs and waitlist (48.5/285, 17% vs. 16.6/143, 11.6%, p = 0.20), but analysis of completers showed both iCBT programs to be superior to the waitlist (24/108, 22.2% vs. 13/113, 11.5%, p = 0.047). ITT analysis with missing data imputed showed no difference between the two iCBTs (SPHERE: 24.8/143, 17.3% vs. PRISM: 23.7/142, 16.7%, p = 0.99). Uptake rates of the iCBTs were high (76.9% and 81.69% logged in at least once into SPHERE and PRISM, respectively), but adherence was low (out of those who logged in at least once, 19.01% [21/110] completed at least 50% modules in SPHERE and 7.76% [9/116] set a goal for trying out a given trigger-specific recommendation in PRISM). Acceptability ratings were intermediate. CONCLUSIONS: Self-guided iCBTs were not found to be superior in our primary ITT analysis. Low adherence could explain the lack of effects as completer analysis showed effects for both interventions. Enhancement of adherence should be a focus of future research.
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OBJECTIVE: Although juvenile idiopathic arthritis (JIA) is often associated with pain, this experience does not necessitate negative outcomes (eg, depression, functional impairment). Little research has explored youth and parent resilience resources (ie, stable traits) and mechanisms (ie, dynamic processes) in this context, and studies have focused on their contributions independently rather than collectively. This study, informed by the Ecological Resilience-Risk Model in Pediatric Chronic Pain, sought to (1) explore the relationships among youth and parent resilience resources and mechanisms and (2) identify the relative importance (RI; ie, independent contributions when entered simultaneously) of evidence-based youth and parent resources and mechanisms in contributing to youth-reported recovery, sustainability, and growth outcomes. METHODS: Youth (13-18 years) with JIA and their parents (156 dyads) completed a battery of online questionnaires assessing resilience resources (optimism, resilience), mechanisms (psychological flexibility, pain acceptance, self-efficacy), recovery and sustainability (pain intensity, functional disability, health-related quality of life), and growth (benefit finding) outcomes. RESULTS: Analyses demonstrated significant positive correlations across within-person resources and mechanisms and weaker correlations across within-dyad resources and mechanisms. Although the RI of predictors varied by outcome, youth pain acceptance was the most robust predictor across models (RI = 0.03-0.15). Some predictors (eg, parent psychological flexibility and pain acceptance) were generally categorized as "Not Important," whereas others (eg, youth resilience) had "Inconclusive" results, suggesting construct overlap. CONCLUSION: Although additional research is needed to further understand resilience, results highlight the importance of fostering pain acceptance in youth and incorporating parents in psychosocial interventions to optimize living with JIA.
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BACKGROUND: Electronic patient-reported outcome measures (ePROMs) are standardized digital instruments integrated into clinical care to collect subjective data regarding patients' health-related quality of life, functional status, and symptoms. In documenting patient-reported progress, ePROMs can guide treatment decisions and encourage measurement-based care practices. Voxe is a pediatric and user-centered ePROM platform for patients with chronic health conditions. OBJECTIVE: We aimed to describe the user-centered design approach involving feedback from end users and usability testing of Voxe's platform features to support implementation in a pediatric health care setting. METHODS: Purposive sampling was used to recruit patients aged 8-17 years from 2 chronic illness populations in 2 pediatric hospitals in Canada. Patients' health care team members were also purposively recruited. One-on-one iterative testing sessions were conducted digitally by research team members with participants to obtain feedback on the appearance and functionalities of the Voxe platform prototype. Patients and health care providers (HCPs) completed Voxe-related task-based activities. International Organization for Standardization key performance indicators were tracked during HCP task-based activities. HCPs also completed the System Usability Scale. To test platform usability, the think-aloud technique was used by participants during the completion of structured tasks. After completing all task-based activities, patient participants selected 5 words from the Microsoft Desirability Toolkit to describe their overall impression and experience with the Voxe platform. Qualitative data about likes, dislikes, and ease of use were collected through semistructured interviews. Feedback testing sessions were conducted with patients and HCPs until Voxe was acceptable to participating end users, with no further refinements identified. Quantitative and qualitative data analysis were completed using descriptive statistics and content analysis. RESULTS: A total of 49 patients and 38 HCPs were recruited. Patients were positive about Voxe's child-centered design characteristics and notification settings. HCPs rated Voxe as user-friendly and efficient, with the time to complete tasks decreasing over time. HCPs were satisfied with the Voxe platform functionalities and identified the value of Voxe's system notifications, summarized display of ePROM results, and its capacity to integrate with electronic medical records. Patients' and HCPs' high satisfaction rates with the Voxe prototype highlight the importance of being responsive to user suggestions from the inception of eHealth platform developments to ensure their efficient and effective design. CONCLUSIONS: This paper describes the user-centered creation and usability testing of Voxe as an ePROM platform for implementation into clinical care for pediatric patients with chronic health conditions. As a patient-facing platform that can be integrated into electronic medical records, Voxe aligns with measurement-based care practices to foster quality patient-centered approaches to care. End users' positive feedback and evaluation of the platform's user-friendliness and efficiency suggest that Voxe represents a valuable and promising solution to systematically integrate patient-related outcome (PRO) data into complex and dynamic clinical health care settings. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.1136/bmjopen-2021-053119.
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Medición de Resultados Informados por el Paciente , Diseño Centrado en el Usuario , Humanos , Niño , Adolescente , Femenino , Masculino , Canadá , Enfermedad Crónica/terapia , Calidad de Vida , Registros Electrónicos de SaludRESUMEN
Improving cognitive sequelae in children treated for brain tumours (CTBT) requires accessible interventions. While instructor-led exercise in a hospital setting is efficacious, it is not extended to communities. Objectives: We aimed to (i) develop a website with educational resources/tools for community health and fitness professionals (HFP) to deliver exercise for CTBT in community settings to improve cognition and (ii) assess its usability by community HFP. It was hypothesized that the website would be learnable, clear, satisfactory and efficient to deliver exercise. Methods: A scoping review determined the state of eHealth resources to support exercise for CTBT and identified knowledge and resource gaps. Three focus groups with HFP who served cancer survivors in hospital or community settings (n = 13) identified user needs; content analysis identified themes. Gaps from the scoping review and themes from focus groups informed website content. A questionnaire assessed its usability by community HFP (n = 4). Descriptive statistics inferred the website's learnability, clarity, satisfaction and efficiency. Open-ended responses identified issues. Results: The scoping review revealed a lack of eHealth resources supporting exercise to improve cognition in CTBT and education for HFP to deliver exercise. Six themes were identified in the focus groups. HFP rated the website as sufficiently learnable, clear, satisfactory and efficient. Two minor issues were reported and addressed. Conclusion: The website marks one of the first eHealth resources to increase accessibility of intervention to improve cognitive sequelae and ultimately quality of life in CTBT. HFP also gain access to education and tools to deliver exercise in community settings.
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BACKGROUND: An increase in self-management skills for adolescent thoracic transplant recipients may improve health outcomes and facilitate a successful transition to adulthood. The iPeer2Peer program is an online peer mentorship program that has been successfully implemented as a self-management intervention in multiple chronic disease populations. This study aimed to determine the implementation and effectiveness outcomes of the iPeer2Peer program for adolescent thoracic transplant recipients. METHODS: A type III, hybrid implementation-effectiveness pilot study that comprised a quasi-experimental single-arm pre-post design was used to evaluate the iPeer2Peer program. Participant mentees, ages 12-17, were recruited from 2 large Canadian transplant centers. Peer mentors, ages 18-25, were thoracic transplant recipients who had successfully transitioned to adult care and self-manage their condition. A mixed methods approach for data collection was used, including interviews, focus groups, and standardized questionnaires. RESULTS: Twenty mentees (median 15.0 years, IQR 3.3 years; 65% female) completed the iPeer2Peer program with 9 young adult mentors (median 21.0 years, IQR 3.0 years; 78% female). Implementation outcomes indicated that the iPeer2Peer program was perceived as feasible, adoptable, acceptable, and appropriate for adolescent thoracic transplant recipients. Significant findings were noted in mentees for increased self-management and a decrease in overall depression and anxiety symptoms. CONCLUSIONS: The successful implementation of the pilot iPeer2Peer program offers support to evaluate the scalability, sustainability, and cost-effectiveness of the program for adolescents with chronic illness, specifically thoracic transplant recipients. Changes to the iPeer2Peer program that facilitate a flexible delivery may help implementation and acceptance.
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BACKGROUND AND OBJECTIVES: Care plans summarize a child with medical complexity's (CMC) medical history and ongoing care needs. Often, the health care team controls the care plan content, limiting caregivers' ability to edit the document in real time and potentially compromising accuracy and utility. With this study, we aimed to provide caregivers of CMC with online access and shared editing control of their child's care plan and to explore the experiences of caregivers and care team members (CTMs) after using an online collaborative care plan (OCCP). METHODS: Caregivers of CMC were recruited from a tertiary complex care program to use an online, patient-facing platform for 6 months, which included the ability to edit and share their child's care plan. Caregivers and CTMs participated in semi-structured interviews to explore their experiences in using the OCCP. Consistent with grounded theory methodology, a constant comparative analysis was used, which allowed for theoretical sampling and theory generation. RESULTS: A total of 15 caregivers and 20 CTMs completed interviews. Interviews revealed 3 major themes and 9 subthemes, including (1) the navigation of uncharted roles (trust, responsibility), (2) the requirements for success (electronic medical record integration, online access, collaborative care plan review), and (3) cohesive care (accessibility and convenience, being on the same page, autonomy). Themes informed the creation of a theoretical model for the implementation and utility of OCCPs. CONCLUSIONS: Online, collaborative care plans, when implemented safely and thoughtfully, promote shared understanding, improve caregiver autonomy, and increase the accessibility of health information. Together, these benefits facilitate cohesive care and authentic partnership between caregivers and CTMs in the care of CMC.
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Cuidadores , Planificación de Atención al Paciente , Grupo de Atención al Paciente , Humanos , Cuidadores/psicología , Niño , Masculino , Femenino , Planificación de Atención al Paciente/organización & administración , Conducta Cooperativa , Adulto , Preescolar , Adolescente , Internet , Persona de Mediana Edad , Actitud del Personal de SaludRESUMEN
Background: Most children and adolescents with cancer experience acute pain, and many experience longer-lasting chronic pain, negatively impacting health-related quality of life and resulting in long-term morbidity. Digital apps can aid in enhancing pain assessment and management by offering children and adolescents with cancer an accessible tool to describe their pain as a multifaceted biopsychosocial construct. Pain Squad is a useable, acceptable, and psychometrically sound multidimensional cancer pain assessment app for children and adolescents with cancer. This project aimed to evaluate the capacity to implement Pain Squad into routine pediatric oncology practice. Method: Nurse champions were asked to prescribe the Pain Squad app to patients over a 6-month implementation period. After the implementation period, we conducted audiorecorded, semistructured interviews with nurse champions to investigate the facilitators and barriers related to nurses' experiences with implementing Pain Squad. Results: The facilitators and barriers to Pain Squad implementation were organized into four overarching Consolidated Framework for Implementation Research (CFIR)-related themes: (a) characteristics of the Pain Squad app; (b) clinic setting and its context; (c) nurse implementation champions; and (d) the process of implementing Pain Squad into clinical practice. Conclusions: Interviewed nurses believed Pain Squad had the potential to improve child cancer pain care, but barriers to everyday use were evident, described in relation to the internal setting, especially the lack of compatibility between app prescription and current nurse workflows. The use of CFIR to map identified implementation facilitators and barriers can formally support the recognition of factors that may boost the chances of successful uptake.
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Neoplasias , Dimensión del Dolor , Investigación Cualitativa , Mejoramiento de la Calidad , Humanos , Niño , Adolescente , Dimensión del Dolor/métodos , Masculino , Femenino , Neoplasias/complicaciones , Manejo del Dolor/métodos , Aplicaciones Móviles , Dolor en Cáncer/terapia , Dolor en Cáncer/diagnóstico , Calidad de VidaRESUMEN
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.
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Supervivientes de Cáncer , Dolor Crónico , Neoplasias , Humanos , Masculino , Femenino , Dolor Crónico/psicología , Dolor Crónico/epidemiología , Supervivientes de Cáncer/psicología , Adulto , Adulto Joven , Persona de Mediana Edad , Neoplasias/complicaciones , Neoplasias/psicología , Neoplasias/epidemiología , Dimensión del Dolor/métodosRESUMEN
Dementia spousal caregivers are at risk for adverse mental and physical health outcomes. Caregiver burden, anticipatory grief, and proinflammatory cytokine production may contribute to depressive symptoms among caregivers. People who report childhood trauma are more likely to have exaggerated stress responses that may also contribute to depressive symptoms in adulthood. This study aimed to test whether the relationship between whole-blood cytokine production and depressive symptoms is strongest in caregivers who report high levels of childhood trauma. METHODS: A sample of 103 dementia spousal caregivers provided self-report data on demographics, health information, caregiver burden, anticipatory grief, and depressive symptoms. We also determined lipopolysaccharide-induced whole-blood cytokine production as the primary measure of immune cell reactivity. We measured interleukin-1ß (IL-1ß), interleukin-6 (IL-6), tumor necrosis factor-α (TNF-α), and interleukin-10 (IL-10) and converted z-scores of each cytokine into a composite panel. We regressed depressive symptoms on proinflammatory cytokine production, caregiver burden, and anticipatory grief, adjusting for demographic and health-related covariates. RESULTS: Whole-blood cytokine production and childhood trauma were associated with depressive symptoms. Childhood trauma moderated the relationship between whole-blood cytokine production and depressive symptoms. Whole-blood cytokine production was only associated with depressive symptoms at mean and high levels of childhood trauma, but not at low levels of childhood trauma. The main effects of burden and anticipatory grief on depressive symptoms were strongest for caregivers reporting high levels of childhood trauma. DISCUSSION: Childhood trauma has lasting impacts on psychosocial experiences later in life and has effects that may confer susceptibility to inflammation-related depression. Our findings contribute to ongoing efforts to identify risk factors for adverse mental health in dementia spousal caregivers.
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Cuidadores , Citocinas , Demencia , Depresión , Esposos , Humanos , Femenino , Cuidadores/psicología , Masculino , Depresión/psicología , Anciano , Citocinas/sangre , Citocinas/metabolismo , Esposos/psicología , Persona de Mediana Edad , Lipopolisacáridos , Factor de Necrosis Tumoral alfa/sangre , Interleucina-6/sangre , Pesar , Interleucina-10/sangre , Interleucina-1beta/sangre , Carga del Cuidador/psicología , Experiencias Adversas de la Infancia , Anciano de 80 o más Años , Estrés Psicológico/psicologíaRESUMEN
Pain is common in paediatric populations and is best treated with a multi-disciplinary approach. Art therapy interventions are gaining popularity in paediatrics; however, there is limited evidence on its impact on pain outcomes in children and adolescents. The objective of this scoping review is to map current research on art therapy's impact as an intervention in paediatric populations experiencing any type of pain (i.e., acute, recurrent, and chronic). Electronic searches were conducted by a medical librarian to identify studies that used art therapy interventions in paediatric populations with pain as an outcome measure. Four reviewers independently screened and selected articles for extraction using Covidence and data were extracted from articles using study objectives. There were five studies that met the inclusion criteria. Four of the five studies reported on pain intensity and all studies reported on emotional functioning. Findings suggest art therapy interventions can be helpful for reducing pain, anxiety, stress, and fear associated with treatment. Further, there is emerging evidence that art therapy can support the management of acute and procedural pain in children. Future research should examine the impacts of integrating art therapy interventions into the multidisciplinary management of paediatric pain.
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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.
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BACKGROUND: Age and sex differences may exist in the frequency (incidence, prevalence) or symptoms of neuropathic pain (NP) and complex regional pain syndrome (CRPS) due to biopsychosocial factors (eg, neurodevelopment, physiological and hormonal changes, psychosocial differences) that evolve through childhood and adolescence. Age and sex differences may have implications for evaluating screening and diagnostic tools and treatment interventions. OBJECTIVE: To map the existing literature on pediatric NP and CRPS with respect to age and sex distributions, and age and sex differences in symptomology and frequency. METHODS: A scoping literature review was conducted. Databases were searched from inception to January 2023. Data were collected on study design, setting, demographics, and age and sex differences in frequency and symptoms. RESULTS: Eighty-seven studies were included. Distribution of participants with CRPS (n=37 studies) was predominantly early adolescence (10 to 14 y) and female sex, while NP (n=42 studies) was most commonly reported throughout adolescence (10 to 19 y) in both sexes. Forty-one studies examined age and sex differences in frequency; 6 studies reported higher frequency in adolescence. Very few studies (n=11) examined differences in symptomology. DISCUSSION: Large epidemiological studies are required to further understand age and sex differences in frequency of pediatric NP and CRPS. Age and sex differences must be considered when evaluating screening and diagnostic tools and treatment interventions to ensure relevance and validity to both sexes and across ages. Validated tools will improve understanding of age-dependent and sex-dependent differences in symptoms, pathophysiology, and psychosocial impact of pediatric NP and CRPS.
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Síndromes de Dolor Regional Complejo , Neuralgia , Adolescente , Niño , Femenino , Humanos , Masculino , Adulto Joven , Factores de Edad , Síndromes de Dolor Regional Complejo/epidemiología , Síndromes de Dolor Regional Complejo/diagnóstico , Neuralgia/epidemiología , Neuralgia/diagnóstico , Factores SexualesRESUMEN
OBJECTIVE: Chronic stress adversely affects mental and physical well-being. However, health outcomes vary among people experiencing the same stressor. Individual differences in physical and emotional well-being may depend on mitochondrial biology, as energy production is crucial for stress regulation. This study investigated whether mitochondrial respiratory capacity corresponds to individual differences in dementia spousal caregivers' mental and physical health. METHODS: Spousal caregivers of individuals with Alzheimer's disease and related dementias ( N = 102, mean age = 71, 78% female, 83% White) provided peripheral blood samples and completed self-report questionnaires on quality of life, caregiver burden, and a 7-day affect scale. Multiple and mixed linear regressions were used to test the relationship between mitochondrial biology and well-being. RESULTS: Spare respiratory capacity ( b = 12.76, confidence interval [CI] = 5.23-20.28, p = .001), maximum respiratory capacity ( b = 8.45, CI = 4.54-12.35, p < .0001), and ATP-linked respiration ( b = 10.11, CI = 5.05-15.18, p = .0001) were positively associated with physical functioning. At average ( b = -2.23, CI = -3.64 to -0.82, p = .002) and below average ( b = -4.96, CI = -7.22 to 2.70, p < .0001) levels of spare respiratory capacity, caregiver burden was negatively associated with daily positive affect. At above average levels of spare respiratory capacity, caregiver burden was not associated with positive affect ( p = .65). CONCLUSIONS: Findings suggest that higher mitochondrial respiratory capacity is associated with better psychological and physical health-a pattern consistent with related research. These findings provide some of the earliest evidence that cellular bioenergetics are related to well-being.
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Cuidadores , Demencia , Metabolismo Energético , Mitocondrias , Humanos , Femenino , Masculino , Cuidadores/psicología , Anciano , Persona de Mediana Edad , Demencia/fisiopatología , Metabolismo Energético/fisiología , Mitocondrias/metabolismo , Calidad de Vida , Enfermedad de Alzheimer/fisiopatología , Afecto/fisiología , Anciano de 80 o más Años , Estado de Salud , Carga del Cuidador , Esposos/psicología , Estrés Psicológico/metabolismo , Estrés Psicológico/fisiopatologíaRESUMEN
Chronic pain and mental health issues occur at higher rates in Veterans than the general population. One widely recognized mental health issue faced by Veterans is post-traumatic stress disorder (PTSD). Trauma symptoms and pain frequently co-occur and are mutually maintained due to shared mechanisms. Many Veterans are also parents. Parental physical and mental health issues significantly predict children's chronic pain and related functioning, which can continue into adulthood. Only 1 U.S.-based study has examined pain in the offspring of Veterans, suggesting a heightened risk for pain. Research to date has not examined the associations between trauma and pain and the dyadic influences of these symptoms, among Veterans, and their children. The current study aimed to describe pain characteristics in Canadian Armed Forces Members/Veterans with chronic pain and their offspring (youth and adult children aged 9-38). Cross-lagged panel models were conducted to examine dyadic relationships between pain interference and trauma symptoms of Canadian Armed Forces Members/Veterans and their offspring. Over half of adult offspring and over one-quarter of youth offspring reported chronic pain. Results revealed effects between one's own symptoms of PTSD and pain interference. No significant effects of parents on offspring or offspring on parents were found. The findings highlight the interconnection between pain and PTSD consistent with mutual maintenance models and a lack of significant interpersonal findings suggestive of resiliency in this unique population. PERSPECTIVE: We characterized chronic pain in the offspring of Canadian Armed Forces Members/Veterans with chronic pain and examined dyadic relationships between PTSD symptoms and chronic pain interference. Findings revealed that PTSD symptoms and pain interference were related within Veterans and offspring, but no dyadic relationships were found, which could reflect resiliency.