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1.
JMIR Form Res ; 5(11): e25392, 2021 Nov 01.
Artigo em Inglês | MEDLINE | ID: mdl-34723820

RESUMO

BACKGROUND: Sleep disturbance and its daytime sequelae, which comprise complex, transdiagnostic sleep problems, are pervasive problems in adolescents and young adults (AYAs) and are associated with negative outcomes. Effective interventions must be both evidence based and individually tailored. Some AYAs prefer self-management and digital approaches. Leveraging these preferences is helpful, given the dearth of AYA treatment providers trained in behavioral sleep medicine. We involved AYAs in the co-design of a behavioral, self-management, transdiagnostic sleep app called DOZE (Delivering Online Zzz's with Empirical Support). OBJECTIVE: This study tests the feasibility and acceptability of DOZE in a community AYA sample aged 15-24 years. The secondary objective is to evaluate sleep and related outcomes in this nonclinical sample. METHODS: Participants used DOZE for 4 weeks (2 periods of 2 weeks). They completed sleep diaries, received feedback on their sleep, set goals in identified target areas, and accessed tips to help them achieve their goals. Measures of acceptability and credibility were completed at baseline and end point. Google Analytics was used to understand the patterns of app use to assess feasibility. Participants completed questionnaires assessing fatigue, sleepiness, chronotype, depression, anxiety, and quality of life at baseline and end point. RESULTS: In total, 83 participants created a DOZE account, and 51 completed the study. During the study, 2659 app sessions took place with an average duration of 3:02 minutes. AYAs tracked most days in period 1 (mean 10.52, SD 4.87) and period 2 (mean 9.81, SD 6.65), with a modal time of 9 AM (within 2 hours of waking). DOZE was appraised as highly acceptable (mode≥4) on the items "easy to use," "easy to understand," "time commitment," and "overall satisfaction" and was rated as credible (mode≥4) at baseline and end point across all items (logic, confident it would work, confident recommending it to a friend, willingness to undergo, and perceived success in treating others). The most common goals set were decreasing schedule variability (34/83, 41% of participants), naps (17/83, 20%), and morning lingering in bed (16/83, 19%). AYAs accessed tips on difficulty winding down (24/83, 29% of participants), being a night owl (17/83, 20%), difficulty getting up (13/83, 16%), and fatigue (13/83, 16%). There were significant improvements in morning lingering in bed (P=.03); total wake time (P=.02); sleep efficiency (P=.002); total sleep time (P=.03); and self-reported insomnia severity (P=.001), anxiety (P=.002), depression (P=.004), and energy (P=.01). CONCLUSIONS: Our results support the feasibility, acceptability, credibility, and preliminary efficacy of DOZE. AYAs are able to set and achieve goals based on tailored feedback on their sleep habits, which is consistent with research suggesting that AYAs prefer autonomy in their health care choices and produce good results when given tools that support their autonomy. TRIAL REGISTRATION: ClinicalTrials.gov NCT03960294; https://clinicaltrials.gov/ct2/show/NCT03960294.

2.
Pain ; 2021 Sep 13.
Artigo em Inglês | MEDLINE | ID: mdl-34799536

RESUMO

ABSTRACT: This study describes the minimum incidence of pediatric complex regional pain syndrome (CRPS), clinical features, and treatments recommended by pediatricians and pain clinics in Canada. Participants in the Canadian Paediatric Surveillance Program reported new cases of CRPS aged 2 to 18 years monthly and completed a detailed case reporting questionnaire from September 2017 to August 2019. Descriptive analysis was completed, and the annual incidence of CRPS by sex and age groupings was estimated. A total of 198 cases were reported to the Canadian Paediatric Surveillance Program, and 168 (84.8%) met the case definition. The minimum Canadian incidence of CRPS is estimated at 1.14/100,000 (95% confidence interval 0.93-1.35/100,000) children per year. Incidence was highest among girls 12 years and older (3.10, 95% confidence interval 2.76-3.44/100,000). The mean age of CRPS diagnosis was 12.2 years (SD = 2.4), with the mean time from symptom onset to diagnosis of 5.6 months (SD = 9.9) and no known inciting event for 19.6% of cases. Most cases had lower limb involvement (79.8%). Nonsteroidal anti-inflammatory drugs (82.7%) and acetaminophen (66.0%) were prescribed more commonly than antiepileptic drugs (52.3%) and antidepressants (32.0%). Referrals most commonly included physical therapy (83.3%) and multidisciplinary pain clinics (72.6%); a small number of patients withdrew from treatment because of pain exacerbation (5.3%). Pain education was recommended for only 65.6% of cases. Treatment variability highlights the need for empiric data to support treatment of pediatric CRPS and development of treatment consensus guidelines.

3.
ACR Open Rheumatol ; 2021 Nov 17.
Artigo em Inglês | MEDLINE | ID: mdl-34791829

RESUMO

OBJECTIVE: The study objective was to test the acceptability of a self-management program (SMP) for adolescents with juvenile idiopathic arthritis (JIA) focused on disease information, self-management, and social support needs. METHODS: This study was conducted using inductive qualitative methods to explore the acceptability of an in-person/videoconference SMP. Two groups of four adolescents with JIA (mean age = 13.5, SD = 0.8) and two groups of pediatric rheumatology health care professionals (n = 4, n = 5) participated in four feedback sessions each. The SMP was presented to study participants, and feedback was provided on the content, format, and structure of the program. Thematic analysis was used to analyze the data. RESULTS: Adolescents felt that the content was appropriate and would be effective in supporting self-management of their arthritis. Participants advised that the trustworthiness of the information would be increased if a rheumatology health care provider facilitated the session. Potential barriers to participation included distance and availability (weekdays and times), but the option for videoconference-based participation was an appropriate solution to both of these issues. Minor changes were made to content and format, and required changes were made to address participant recommendations for improvement. CONCLUSION: This study confirmed the acceptability of an in-person/videoconference SMP for patients with JIA. Modifications were made to the SMP based on the focus group feedback, and future directions include a pilot randomized controlled trial to assess feasibility and preliminary effectiveness of the program.

4.
Clin J Pain ; 2021 Oct 12.
Artigo em Inglês | MEDLINE | ID: mdl-34636750

RESUMO

OBJECTIVE: Neuropathic pain (NP) and complex regional pain syndrome (CRPS) in children can result in significant disability and emotional distress. Early assessment and treatment could potentially improve pain, function, quality of life, and reduce costs to the health care system. Currently, there are no screening tools for pediatric NP and CRPS. This research aimed to develop and establish the content validity of a screening tool for pediatric NP and CRPS using a phased approach. METHODS: Phase I surveyed clinical experts using a modified Delphi procedure to elicit disease concepts for inclusion. In Phase II, a consensus conference including clinicians, researchers, and people with lived experience, informed the initial item pool. Consensus for item inclusion was achieved using a nominal group technique for voting. Phase III used iterative rounds of cognitive interviews with children aged 8-18 years with CRPS or NP to evaluate the tool's comprehensiveness and individual item relevance and comprehensibility. Descriptive statistics were used to describe participant characteristics. Content analysis was used to analyze patient interviews. RESULTS: Phase I (n=50) generated an initial item pool (22 items). Phase II generated a comprehensive item pool (50 items), after which an initial version of the screening tool was drafted. Following Phase III (n=26) after item revision and elimination, 37 items remained. DISCUSSION: The Pediatric PainSCAN© is a novel screening tool that has undergone rigorous development and content validity testing. Further research is needed to conduct item reduction, determine scoring, and test additional measurement properties.

5.
BMJ Open ; 11(10): e053119, 2021 10 19.
Artigo em Inglês | MEDLINE | ID: mdl-34667013

RESUMO

INTRODUCTION: Patient-reported outcome measures (PROMs) provide an opportunity for meaningful patient engagement and shared decision-making. The objective of this research programme is to improve health outcomes for paediatric solid organ transplant patients by implementing PROMs into clinical care. The current study aims to create Voxe, a paediatric user-centred electronic PROM platform, by engaging patients and healthcare providers throughout the design and development process. METHODS AND ANALYSIS: The creation of Voxe will occur over two phases that build on previous research. The user interface design phase employs a 'user-centric' approach to identify end-users' needs and iteratively refine the look and layout of Voxe to meet these needs. Transplant recipients, aged 10-17, and healthcare providers will participate in three rounds of testing (24 participants total). Participants will: (1) complete task-based activities (outcomes-effectiveness and efficiency), (2) complete questionnaires (outcome-satisfaction) and (3) participate in a semi-structured interview. The following phase involves software development and Voxe usability testing. Transplant recipients, aged 8-17, and healthcare providers will participate in four rounds of iterative testing (24-40 participants total). The think-aloud technique will be employed, and participants will describe their thoughts and feelings while interacting with a Voxe prototype. Participants will: (1) log into Voxe and complete tasks (outcomes-time on task, successful task completion, frequency of critical and non-critical errors and error-free rate), (2) complete questionnaires (outcome-satisfaction) and (3) participate in a semi-structured interview. Findings will result in the creation and launch of a user-centred electronic PROM platform. ETHICS AND DISSEMINATION: Research ethics board approval has been provided by The Hospital for Sick Children. This research is critical to answering methodological and operational questions to inform Voxe implementation in paediatric clinical settings and facilitate PROM data collection. Future investigations will include an implementation-effectiveness evaluation.


Assuntos
Pessoal de Saúde , Transplante de Órgãos , Criança , Eletrônica , Humanos , Medidas de Resultados Relatados pelo Paciente , Inquéritos e Questionários
6.
Curr Anesthesiol Rep ; : 1-10, 2021 Jul 14.
Artigo em Inglês | MEDLINE | ID: mdl-34276254

RESUMO

Purpose of Review: This review summarizes and provides a comprehensive narrative synthesis of the current evidence on immersive technology's (i.e., virtual and augmented Reality) use for perioperative anxiety, acute, and chronic pain in pediatrics. Recent Findings: Researchers have increasingly studied immersive technology as a non-pharmacological alternative for perioperative anxiety, acute, and chronic pain management. We found several research studies published over the last 3 years: almost all studies examined the use of virtual reality for perioperative anxiety and pain; only one case report was about the use of augmented reality for preoperative anxiety. Most studies showed that virtual reality intervention is effective and safe for perioperative anxiety, acute, and chronic pain. However, the studies are heterogeneous with relatively small sample sizes. Summary: This review shows that more high-quality studies (i.e., randomized controlled trials with larger sample sizes and standardized methods for measuring and reporting outcomes) are needed to examine the effectiveness and adverse effects of virtual reality intervention on perioperative anxiety, acute, and chronic pain in pediatrics.

7.
Can J Pain ; 5(1): 139-150, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-34263096

RESUMO

Background: The COVID-19 pandemic presents one of the greatest threats to pediatric pain care seen in generations. Due to public health restrictions, many pediatric pain clinics halted in-person appointments, delaying and disrupting access to care. There is no existing research on the impacts of COVID-19 on pediatric chronic pain care in Canada or the challenges experienced by health care professionals and pain clinics. Aims: The aim of this study was to evaluate the impact of COVID-19 on Canadian pediatric chronic pain care by documenting how health care professionals provided care during the first six months of the pandemic. Methods: Two Canadian online cross-sectional surveys were conducted: one among Canadian pediatric pain clinic directors (Study 1) and another among multidisciplinary pediatric pain health care professionals (Study 2). Results: Responses from 13/13 Canadian pediatric pain clinics/rehabilitation programs indicated that all clinics provided virtual care during the pandemic. No significant changes were reported on the frequency of appointment requests. Most clinics reported no perceived change in patient pain levels (n = 9/13, 69%) or occurrence of pain flares (n = 10/13, 77%). Results from 151 individual health care professionals indicated that the majority (90%) of non-emergency department respondents were providing virtual care. The main challenges of virtual care included technological barriers, financial concerns, infrastructure and logistics, privacy, and clinical challenges. Conclusions: This study documented the impact of the COVID-19 pandemic on pediatric chronic pain care in Canada and highlighted the rapid shift to using virtual solutions. Simultaneously, respondents outlined current challenges and potential solutions to consider in the development of virtual care guidelines and policy in Canada.

8.
Artigo em Inglês | MEDLINE | ID: mdl-34151534

RESUMO

OBJECTIVE: Children with juvenile idiopathic arthritis (JIA) are faced with a complex medical journey requiring consistent adherence to treatments to achieve disease management. Parents are intimately involved in JIA treatments; however, little is known about their experiences in this role. This is relevant as many treatments necessitate procedural pain (e.g., self-injections) or side effects (e.g., nausea), which may impact a parents' ability to follow treatment plans. The objective of this study was to explore the lived experiences of parents who identified challenges with their child's JIA treatments. METHODS: Parents of children with JIA who identified challenges with their child's treatments were invited to take part in semi-structured interviews. Data were analyzed using interpretative phenomenological analysis. RESULTS: Ten mothers of children with JIA (60% female, Mage =11.83 years, range=4-16 years) participated. Four superordinate themes were present in mothers' experiences: (1) treatments altered mothers' roles within the family, increasing their caregiver burden and advocacy; (2) treatments positively and negatively impacted their relationships (e.g., increased support from others, decreased time with others); (3) treatments elicited various emotional responses (e.g., frustration, grief) which affected their well-being; and (4) treatments were at times a source of internal conflict, affecting mothers' actions and adherence. CONCLUSION: Mothers' experiences with their child's JIA treatments affects them in various ways that can subsequently impact treatment adherence. Results highlight the value of supporting parents through these complex treatment regimens and incorporating their experiences in treatment decisions to help promote optimal outcomes for children with JIA and their families.

9.
Pain Rep ; 6(2): e935, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-34104841

RESUMO

The COVID-19 pandemic has acutely challenged health systems and catalyzed the need for widescale virtual care and digital solutions across all areas of health, including pediatric chronic pain. The objective of this rapid systematic review was to identify recommendations, guidelines, and/or best practices for using virtual care to support youth with chronic pain and their families (CRD42020184498). MEDLINE, CINAHL, Embase, APA PsychINFO, and Web of Science were searched the week of May 25, 2020, for English language peer-reviewed articles published since 2010 that (1) discussed children and adolescents aged <18 years reporting any type of chronic pain (ie, pain lasting >3 months); (2) focused on any type of virtual care (eg, telephone, telehealth, telemedicine, mHealth, eHealth, online, or digital); and (3) reported on guidelines, best practices, considerations, or recommendations for virtual care. Abstract and full text screening and data extraction were performed in duplicate. Meta-ethnography was used to synthesize concepts across articles. Of 4161 unique records screened, 16 were included addressing diverse virtual care and pediatric chronic pain conditions. Four key themes were identified: (1) opportunities to better leverage virtual care, (2) direct effective implementation of virtual care, (3) selection of virtual care platforms, and (4) gaps in need of further consideration when using virtual care to support youth with chronic pain and their families. No existing guidelines for virtual care for pediatric chronic pain were identified; however, best practices for virtual care were identified and should be used by health professionals, decision makers, and policymakers in implementing virtual care.

10.
Pediatr Rheumatol Online J ; 19(1): 83, 2021 Jun 05.
Artigo em Inglês | MEDLINE | ID: mdl-34090474

RESUMO

BACKGROUND: Current evidence suggests that many adolescents with juvenile idiopathic arthritis (JIA) do not successfully transfer to adult care, which can result in adverse health outcomes. Although a growing number of clinical programs have been designed to support healthcare transition, there is a lack of psychometrically sound instruments to evaluate their impact on development of transition-related knowledge and skills in youth with JIA. The purpose of this study was to develop and validate RACER (Readiness for Adult Care in Rheumatology), a self-administered instrument designed to measure stages of readiness for key transition-related skills in adolescents with JIA. METHODS: A phased approach was used to develop and evaluate the validity and reliability of RACER. Phase 1 A was a consensus conference with 19 key stakeholders to inform instrument domains and items. Phase 1B determined initial content validity using a sample of 30 adolescents with JIA and 15 clinical and research experts. Finally, Phase 2 was a prospective cohort study with repeated measures to evaluate the internal consistency, test-retest reliability, construct validity and responsiveness of the instrument within a sample of adolescents with JIA. RESULTS: In Phase 1 A, initial item generation yielded a total of 242 items across six domains from the consensus conference, which was subsequently reduced to a 32-item instrument. Phase 1B established the content validity of the instrument in adolescents with JIA. In the Phase 2 study, with a sample of 96 adolescents, the RACER instrument exhibited good internal consistency in five of its six subscales (Cronbach's α > 0.7), and strong test-retest reliability between the first two administrations (ICC = 0.83). It also showed robust convergent validity by highly correlating with measures of self-management (SMSAG, rho = 0.73) and transition (TRANSITION-Q, rho = 0.76). The RACER was not correlated with unrelated measures (discriminant validity; PedsQL, rho = 0.14). The RACER scores increased significantly over time as expected, supporting measure responsiveness. CONCLUSIONS: The RACER is a reliable and valid instrument which is sensitive to change for assessing transition readiness in adolescents with JIA.

11.
Pain ; 162(11): 2658-2668, 2021 11 01.
Artigo em Inglês | MEDLINE | ID: mdl-34050111

RESUMO

ABSTRACT: Poor access to pediatric chronic pain care is a longstanding concern. The COVID-19 pandemic has necessitated virtual care delivery at an unprecedented pace and scale. We conducted a scoping review to create an interactive Evidence and Gap Map of virtual care solutions across a stepped care continuum (ie, from self-directed to specialist care) for youth with chronic pain and their families. Review methodology was codesigned with 8 youth with chronic pain and 7 parents/caregivers. Data sources included peer-reviewed scientific literature, gray literature (app stores and web sites), and a call for innovations. Records were independently coded and assessed for quality. Overall, 185 records were included (105 scientific records, 56 apps, 16 web sites, and 8 innovations). Most virtual care solutions were applicable across pediatric chronic pain diagnoses, with the greatest proportion at lower levels of stepped care (ie, >100 self-guided apps and web sites). Virtual delivery of psychological strategies was common. Evidence gaps were noted at higher levels of stepped care (ie, requiring more resource and health professional involvement), integration with health records, communication with health professionals, web accessibility, and content addressing social/family support, medications, school, substance use, sleep, diet, and acute pain flares or crises. Evidence and Gap Maps are a novel visual knowledge synthesis tool, which enable rapid evidence-informed decision-making by patients and families, health professionals, and policymakers. This evidence and gap map identified high-quality virtual care solutions for immediate scale and spread and areas with no evidence in need of prioritization. Virtual care should address priorities identified by youth with chronic pain and their families.


Assuntos
COVID-19 , Dor Crônica , Adolescente , Criança , Dor Crônica/terapia , Continuidade da Assistência ao Paciente , Humanos , Pandemias , SARS-CoV-2
12.
Nurs Open ; 2021 May 18.
Artigo em Inglês | MEDLINE | ID: mdl-34003608

RESUMO

AIM: To identify subgroups of cancer patients with distinct self-care self-efficacy profiles and to explore factors that can be used to predict those at risk of low self-efficacy. DESIGN: A secondary analysis of data pooled from two cross-sectional surveys was performed. METHODS: In total, 1,367 Chinese cancer survivors were included in the analysis. Latent profile analysis (LPA) was performed to categorize participants into latent subgroups with distinct self-efficacy profiles. Multinomial logistic regression was conducted to identify predictors of self-care self-efficacy subgroup classification. RESULTS: We identified three distinct subgroups: low, medium and high self-care self-efficacy. Patients with the "low" profile, which was characterized by a low education level, single marital status, complications, late cancer stage and a lower level of social support, had the poorest self-care behaviour.

13.
JMIR Res Protoc ; 10(5): e29014, 2021 May 14.
Artigo em Inglês | MEDLINE | ID: mdl-33988517

RESUMO

BACKGROUND: Patients with sickle cell disease (SCD) experience significant medical and psychological stressors that affect their mental health, well-being, and disease outcomes. Digital cognitive behavioral therapy (CBT) has been used in other patient populations and has demonstrated clinical benefits. Although evidence-based, nonpharmacological interventions for pain management are widely used in other populations, these treatments have not been well studied in SCD. Currently, there are no adequately powered large-scale clinical trials to evaluate the effectiveness and dissemination potential of behavioral pain management for adults with SCD. Furthermore, some important details regarding behavioral therapies in SCD remain unclear-in particular, what works best for whom and when. OBJECTIVE: Our primary goal is to compare the effectiveness of two smartphone-delivered programs for reducing SCD pain symptoms: digital CBT versus pain and SCD education (Education). Our secondary goal is to assess whether baseline depression symptoms moderate the effect of interventions on pain outcomes. We hypothesize that digital CBT will confer greater benefits on pain outcomes and depressive symptoms at 6 months and a greater reduction in health care use (eg, opioid prescriptions or refills or acute care visits) over 12 months. METHODS: The CaRISMA (Cognitive Behavioral Therapy and Real-time Pain Management Intervention for Sickle Cell via Mobile Applications) study is a multisite comparative effectiveness trial funded by the Patient-Centered Outcomes Research Institute. CaRISMA is conducted at six clinical academic sites, in partnership with four community-based organizations. CaRISMA will evaluate the effectiveness of two 12-week health coach-supported digital health programs with a total of 350 participants in two groups: CBT (n=175) and Education (n=175). Participants will complete a series of questionnaires at baseline and at 3, 6, and 12 months. The primary outcome will be the change in pain interference between the study arms. We will also evaluate changes in pain intensity, depressive symptoms, other patient-reported outcomes, and health care use as secondary outcomes. We have 80% power to detect a difference of 0.37 SDs between study arms on 6-month changes in the outcomes with 15% expected attrition at 6 months. An exploratory analysis will examine whether baseline depression symptoms moderate the effect of the intervention on pain interference. RESULTS: This study will be conducted from March 2021 through February 2022, with results expected to be available in February 2023. CONCLUSIONS: Patients with SCD experience significant disease burden, psychosocial stress, and impairment of their quality of life. CaRISMA proposes to leverage digital technology and overcome barriers to the routine use of behavioral treatments for pain and depressive symptoms in the treatment of adults with SCD. The study will provide data on the comparative effectiveness of digital CBT and Education approaches and evaluate the potential for implementing evidence-based behavioral interventions to manage SCD pain. TRIAL REGISTRATION: ClinicalTrials.gov NCT04419168; https://clinicaltrials.gov/ct2/show/NCT04419168. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/29014.

14.
Children (Basel) ; 8(5)2021 Apr 30.
Artigo em Inglês | MEDLINE | ID: mdl-33946246

RESUMO

Pediatric chronic post-surgical pain is a surgical complication associated with various levels of functional limitation. Two commonly used measures of functional limitations in youth are the Functional Disability Inventory (FDI) and the PROMIS Pediatric Pain Interference Scale (PPIS), where the former is general, and the latter, pain specific. The aim of the present study was to prospectively compare pre-surgical youth and parent risk factors for youth functional limitations, assessed by the FDI and PPIS, 12 months after major pediatric surgery. Risk factors for the FDI and PPIS were compared in 79 dyads consisting of youth (58% female, M = 14.56 years; SD = 2.31) undergoing major surgery and one of their parents. The FDI and PPIS were highly correlated prior to surgery (r = 0.698, p < 0.001) and even more so 12 months after surgery (r = 0.807, p < 0.001). Parent pre-surgical anxiety sensitivity and youth pre-surgical functional disability significantly predicted 12-month FDI (F(6,56) = 4.443, p = 0.001, Adjusted R2 = 0.25), whereas parent pre-surgical anxiety sensitivity, trait anxiety, pain anxiety, as well as youth pain-related anxiety and worry significantly predicted 12-month PPIS (F(6,45) = 4.104, p = 0.002, Adjusted R2 = 0.27). Risk factors for 12-month general and pain-specific functional limitations differ by dyad member and type. Functional limitations in youth after surgery are predicted by youth and parent factors, however the risk factors differ between the FDI and the PPIS.

15.
Cancer Nurs ; 2021 May 19.
Artigo em Inglês | MEDLINE | ID: mdl-34010216

RESUMO

BACKGROUND: Pain is a frequently reported and distressing symptoms during cancer treatment. However, there is limited evidence on pain reported by Chinese children with cancer. OBJECTIVES: This study aimed to investigate the prevalence, intensity, interference, and management of pain reported by Chinese children during cancer treatment and explore the predictors of pain interference. METHODS: We conducted a cross-sectional survey to investigate the pain intensity, pain interference, co-occurring symptoms (anger, anxiety, depression, fatigue), and pain management strategies reported by children 8 years and older undergoing active cancer treatment in 4 Chinese hospitals. RESULTS: Data were analyzed for 187 children. The prevalence of moderate to severe pain (≥4/10) was 38.50%, with an average pain interference score of 52.97 out of 100. Approximately 24% of children were prescribed pain medicine. Pain interference and pain intensity were marginally correlated (r = 0.047, P < .01) and were both positively correlated with pain duration and co-occurring symptoms and negatively correlated with perceived pain alleviation (all P < .01). Multiple regression analyses suggested that severe pain intensity (B = 2.028, P = .003) and fatigue (B = 0.440, P < .001) significantly predicted higher levels of pain interference (R2 = 0.547, F = 23.102, P < .001). CONCLUSION: Chinese children with cancer reported a low pain intensity score but a relatively high level of pain interference. According to the children's reports, pain has not been sufficiently addressed through Chinese pediatric oncology supportive care. IMPLICATIONS FOR PRACTICE: There is an urgent requirement for comprehensive pain assessment and standardized, targeted interventions in Chinese pediatric oncology pain management.

16.
BMC Health Serv Res ; 21(1): 300, 2021 Apr 01.
Artigo em Inglês | MEDLINE | ID: mdl-33794885

RESUMO

BACKGROUND: Children with medical complexity (CMC) require the expertise of many care providers spanning different disciplines, institutions, and settings of care. This leads to duplicate health records, breakdowns in communication, and limited opportunities to provide comprehensive, collaborative care. The objectives of this study were to explore communication challenges and solutions/recommendations from multiple perspectives including (i) parents, (ii) HCPs - hospital and community providers, and (iii) teachers of CMC with a goal of informing patient care. METHODS: This qualitative study utilized an interpretive description methodology. In-depth semi-structured interviews were conducted with parents and care team members of CMC. The interview guides targeted questions surrounding communication, coordination, access to information and roles in the health system. Interviews were conducted until thematic saturation was reached. Interviews were audio-recorded, transcribed verbatim, and coded and analyzed using thematic analysis. RESULTS: Thirty-two individual interviews were conducted involving parents (n = 16) and care team members (n = 16). Interviews revealed 2 main themes and several associated subthemes (in parentheses): (1) Communication challenges in the care of CMC (organizational policy and technology systems barriers, inadequate access to health information, and lack of partnership in care) (2) Communication solutions (shared systems that can be accessed in real-time, universal access to health information, and partnered contribution to care). CONCLUSION: Parents, HCPs, and teachers face multiple barriers to communication and information accessibility in their efforts to care for CMC. Parents and care providers in this study suggested potential strategies to improve communication including facilitating communication in real-time, universal access to health information and meaningful partnerships.


Assuntos
Comunicação , Pais , Criança , Hospitais , Humanos , Pesquisa Qualitativa
17.
J Med Internet Res ; 23(3): e25505, 2021 03 03.
Artigo em Inglês | MEDLINE | ID: mdl-33656445

RESUMO

BACKGROUND: Communication within the circle of care is central to coordinated, safe, and effective care; yet patients, caregivers, and health care providers often experience poor communication and fragmented care. Through a sequential program of research, the Loop Research Collaborative developed a web-based, asynchronous clinical communication system for team-based care. Loop assembles the circle of care centered on a patient, in private networking spaces called Patient Loops. The patient, their caregiver, or both are part of the Patient Loop. The communication is threaded, it can be filtered and sorted in multiple ways, it is securely stored, and can be exported for upload to a medical record. OBJECTIVE: The objective of this study was to implement and evaluate Loop. The study reporting adheres to the Standards for Reporting Implementation Research. METHODS: The study was a hybrid type II mixed methods design to simultaneously evaluate Loop's clinical and implementation effectiveness, and implementation barriers and facilitators in 6 health care sites. Data included monthly user check-in interviews and bimonthly surveys to capture patient or caregiver experience of continuity of care, in-depth interviews to explore barriers and facilitators based on the Consolidated Framework for Implementation Research (CFIR), and Loop usage extracted directly from the Loop system. RESULTS: We recruited 25 initiating health care providers across 6 sites who then identified patients or caregivers for recruitment. Of 147 patient or caregiver participants who were assessed and met screening criteria, 57 consented and 52 were enrolled on Loop, creating 52 Patient Loops. Across all Patient Loops, 96 additional health care providers consented to join the Loop teams. Loop usage was followed for up to 8 months. The median number of messages exchanged per team was 1 (range 0-28). The monthly check-in and CFIR interviews showed that although participants acknowledged that Loop could potentially fill a gap, existing modes of communication, workflows, incentives, and the lack of integration with the hospital electronic medical records and patient portals were barriers to its adoption. While participants acknowledged Loop's potential value for engaging the patient and caregiver, and for improving communication within the patient's circle of care, Loop's relative advantage was not realized during the study and there was insufficient tension for change. Missing data limited the analysis of continuity of care. CONCLUSIONS: Fundamental structural and implementation challenges persist toward realizing Loop's potential as a shared system of asynchronous communication. Barriers include health information system integration; system, organizational, and individual tension for change; and a fee structure for health care provider compensation for asynchronous communication.


Assuntos
Comunicação , Portais do Paciente , Adulto , Cuidadores , Criança , Registros Eletrônicos de Saúde , Pessoal de Saúde , Humanos
18.
J Med Internet Res ; 23(4): e25916, 2021 04 26.
Artigo em Inglês | MEDLINE | ID: mdl-33667177

RESUMO

BACKGROUND: Virtual reality (VR) and augmented reality (AR) interventions are emerging as promising tools in the treatment of pediatric chronic pain conditions. However, in this young field, there is little consensus to guide the process of engaging in the development and evaluation of targeted VR-based interventions. OBJECTIVE: The INOVATE-Pain (Interdisciplinary Network on Virtual and Augmented Technologies for Pain management) consortium aims to advance the field of VR for pediatric chronic pain rehabilitation by providing guidance for best practices in the design, evaluation, and dissemination of VR-based interventions targeting this population. METHODS: An interdisciplinary meeting of 16 academics, clinicians, industry partners, and philanthropy partners was held in January 2020. RESULTS: Reviewing the state of the field, the consortium identified important directions for research-driven innovation in VR and AR clinical care, highlighted key opportunities and challenges facing the field, and established a consensus on best methodological practices to adopt in future efforts to advance the research and practice of VR and AR in pediatric pain. The consortium also identified important next steps to undertake to continue to advance the work in this promising new area of digital health pain interventions. CONCLUSIONS: To realize the promise of this realm of innovation, key ingredients for success include productive partnerships among industry, academic, and clinical stakeholders; a uniform set of outcome domains and measures for standardized evaluation; and widespread access to the latest opportunities, tools, and resources. The INOVATE-Pain collaborative hopes to promote the creation, rigorous yet efficient evaluation, and dissemination of innovative VR-based interventions to reduce pain and improve quality of life for children.


Assuntos
Realidade Aumentada , Dor Crônica , Realidade Virtual , Adolescente , Criança , Dor Crônica/terapia , Humanos , Manejo da Dor , Qualidade de Vida
19.
J Pediatr Nurs ; 59: e13-e19, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-33752933

RESUMO

PURPOSE: Pain is a distressing symptom for children and adolescents with cancer and is experienced by individuals differently. This study sought to determine subgroups according to their pain experiences, and how demographic, clinical, and quality of life (QOL)-related characteristics might differ across subgroups. DESIGN AND METHODS: This cross-sectional study recruited 187 pediatric patients with cancer aged 8 to 17 years old and asked them to complete measures of pain intensity, pain duration, pain interference and pain control using the Chinese translation of the validated questionnaire from the Pain Squad app, as well as 7 PROMIS measures assessing QOL-related outcomes. Latent profile analysis (LPA) was used to identify latent subgroups. RESULTS: Three subgroups of children were identified: low-pain/low-duration (69.5%), moderate-pain/high-duration (19.8%), and high-pain/moderate-duration (10.7%). Hospitalized children were more likely to be in the moderate-pain/high-duration subgroup. Children in the high-pain/moderate-duration subgroup were more likely to be cared for by unemployed caregivers. Scores on depressive symptoms (p = 0.002), anger (p < 0.001), anxiety (p = 0.045), fatigue (p = 0.044), and mobility (p = 0.008) questionnaire were significantly worse in the high-pain/moderate-duration subgroup than the other two subgroup. PRACTICE IMPLICATIONS: This study provides a scientific foundation for further studies exploring predictive factors related to pain experiences. More targeted treatment strategies targeting the specific characteristics of each subgroup will help improve patients' QOL and use of medical resources. CONCLUSIONS: The 3 identified pain subgroups demonstrate the heterogeneity in pain experiences among pediatric patients with cancer. Knowledge of these subgroups can assist clinicians in better identifying and targeting pain treatment for children with cancer.


Assuntos
Neoplasias , Qualidade de Vida , Adolescente , Criança , China/epidemiologia , Estudos Transversais , Humanos , Neoplasias/complicações , Dor
20.
JMIR Form Res ; 5(3): e23568, 2021 Mar 15.
Artigo em Inglês | MEDLINE | ID: mdl-33720023

RESUMO

BACKGROUND: Although research shows that there is a need for gender-specific vocational support to help youth with disabilities find employment, health care providers often report needing more training in this area. Currently, there are no existing educational simulations of gender-sensitive care within vocational rehabilitation for clinicians who provide care to youth with disabilities. Therefore, developing further educational tools that address gender-sensitive care could help them enhance the care they provide while optimizing patient outcomes. OBJECTIVE: This study aims to codevelop an educational simulation and identify issues relevant to providing gender-sensitive care within the context of vocational rehabilitation for youth with disabilities. METHODS: We used a qualitative co-design approach with a purposive sampling strategy that involved focus group discussions and journal reflections to understand and address issues relevant to gender-sensitive care within vocational rehabilitation for those working with youth with disabilities. A total of 10 rehabilitation providers participated in two sessions (5 participants per session) to design the web-based simulation tool. The sessions (2.5 hours each) were audio recorded, transcribed, and analyzed thematically. RESULTS: Two main themes arose from our analysis of codeveloping a simulation focusing on gender-sensitive care. The first theme involved the relevance of gender within clinical practice; responses varied from hesitance to acknowledging but not talking about it to those who incorporated gender into their practice. The second theme focused on creating a comfortable and safe space to enable gender-sensitive care (ie, included patient-centered care, effective communication and rapport building, appropriate language and pronoun use, respecting gender identity, awareness of stereotypes, and responding to therapeutic ruptures). CONCLUSIONS: Our web-based gender-sensitive care simulation that addressed vocational rehabilitation among youth with disabilities was cocreated with clinicians. The simulation highlights many issues relevant to clinical practice and has potential as an educational tool for those working with young people with disabilities.

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