Patient engagement in pediatric concussion research.
Ontology highlight
ABSTRACT:
SUBMITTER: Reed N
PROVIDER: S-EPMC6472466 | biostudies-literature | 2018 Nov
REPOSITORIES: biostudies-literature
Publications
Patient engagement in pediatric concussion research.
Reed Nick N Leeder Kathy K Zemek Roger R
CMAJ : Canadian Medical Association journal = journal de l'Association medicale canadienne 20181101 Suppl
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Project description:BackgroundIn the last decades, pediatric patient engagement has received growing attention and its importance is increasingly acknowledged. Pediatric patient engagement in health care can be defined as the involvement of children and adolescents in the decision-making of daily clinical care, research and intervention development. Although more attention is paid to pediatric patient engagement, a comprehensive overview of the activities that have been done regarding pediatric patient engagement and the changes over time is lacking. Therefore, the aim of this study is to provide an overview of the literature about pediatric patient engagement.MethodsThe methodological framework of Arksey & O'Malley was used to conduct this scoping review. The bibliographic databases Medline, Embase, and PsycINFO were searched for eligible articles. All retrieved articles were screened by at least two researchers in two steps. Articles were included if they focused on pediatric patient engagement, were carried out in the context of clinical care in pediatrics, and were published as full text original article in English or Dutch. Data (year of publication, country in which the study was conducted, disease group of the participants, setting of pediatric patient engagement, used methods, and age of participants) were extracted, synthesized, and tabulated.ResultsA total of 288 articles out of the 10,714 initial hits met the inclusion criteria. Over the years, there has been an increase in the number of studies that engage pediatric patients. Pediatric patients, especially patients with multiple conditions or oncology patients, were most involved in studies in the United States, United Kingdom, and Canada. Pediatric patients were most often asked to express their views on questions from daily clinical care and the individual interview was the most used method. In general, the extent to which pediatric patients are engaged in health care increases with age.DiscussionThis scoping review shows that there is an increasing interest in pediatric patient engagement. However, lack of uniformity about the definition of pediatric patient engagement and clear information for clinicians hinders engagement. This overview can inform clinicians and researchers about the different ways in which pediatric patient engagement can be shaped and can guide them to engage pediatric patients meaningfully in their projects.
| S-EPMC10060502 | biostudies-literature
Project description:BACKGROUND: A compelling ethical rationale supports patient engagement in healthcare research. It is also assumed that patient engagement will lead to research findings that are more pertinent to patients' concerns and dilemmas. However; it is unclear how to best conduct this process. In this systematic review we aimed to answer 4 key questions: what are the best ways to identify patient representatives? How to engage them in designing and conducting research? What are the observed benefits of patient engagement? What are the harms and barriers of patient engagement? METHODS: We searched MEDLINE, EMBASE, PsycInfo, Cochrane, EBSCO, CINAHL, SCOPUS, Web of Science, Business Search Premier, Academic Search Premier and Google Scholar. Included studies were published in English, of any size or design that described engaging patients or their surrogates in research design. We conducted an environmental scan of the grey literature and consulted with experts and patients. Data were analyzed using a non-quantitative, meta-narrative approach. RESULTS: We included 142 studies that described a spectrum of engagement. In general, engagement was feasible in most settings and most commonly done in the beginning of research (agenda setting and protocol development) and less commonly during the execution and translation of research. We found no comparative analytic studies to recommend a particular method. Patient engagement increased study enrollment rates and aided researchers in securing funding, designing study protocols and choosing relevant outcomes. The most commonly cited challenges were related to logistics (extra time and funding needed for engagement) and to an overarching worry of a tokenistic engagement. CONCLUSIONS: Patient engagement in healthcare research is likely feasible in many settings. However, this engagement comes at a cost and can become tokenistic. Research dedicated to identifying the best methods to achieve engagement is lacking and clearly needed.
| S-EPMC3938901 | biostudies-other
Project description:BackgroundPatient engagement in research is a dominant discourse in clinical research settings as it is seen as a move toward sustainable and equitable health care systems. In Canada, a key driver is the Strategy for Patient-Oriented Research of the Canadian Institutes of Health Research, which asserts that meaningful patient engagement can only be fostered when stakeholders understand its value. This study assessed researchers' perceptions of the meaning and value of patient engagement in research within a Canadian cardiovascular research network. In doing so, the secondary aim was to inform the development of a structured patient engagement initiative by identifying potential challenges and related mitigation strategies.MethodsWe employed a multi-method strategy involving electronic surveys and semi-structured telephone interviews with network research scientists across Canada. Interview data were analyzed using thematic and content analysis. Survey data were analyzed using descriptive statistics.ResultsThirty-eight electronic surveys (response rate =33%) and 16 interviews were completed with network members. Some participants were uncertain about the meaning and value of patient engagement. While voicing guarded support, four challenges relating to patient engagement were identified from the interviews: 1) identification of representative and appropriate patients, 2) uncertainty about the scope of patients' roles given concerns about knowledge discrepancies, 3) a perceived lack of evidence of the impact of patient engagement, and 4) the need for education and culture change as a prerequisite for patient engagement. Research scientists were largely concerned that patients untrained in science and tasked with conveying an authentic patient experience and being a conduit for the voices of others might unsettle a traditional model of conducting research.ConclusionConcerns about patient involvement in research were related to a lack of clarity about the meaning, process, and impact of involvement. This study highlights the need for education on the meaning of patient engagement, evidence of its impact, and guidance on practical aspects of implementation within this research community.
| S-EPMC5602467 | biostudies-literature
Project description:BackgroundPatient and Public Involvement (PPI) in research is increasingly being utilized to better connect patients and researchers. The Patient Engagement Studio (PES) supports PPI in research by working directly with researchers throughout various stages of their projects. Recently, two researchers presented to the PES for assistance with their project, Embryo+™. The purpose of Embryo+™ is to decrease miscarriage rates using RNA sequencing technology that screens for the most viable embryos. To date, no examples of PPI directly in the planning or implementation of bench research concerning in vitro fertilization and embryo transfer have been identified.Main bodyEmbryo+™ researchers met in-person with the PES two times (fall 2019; each meeting had 9 PES members in attendance) for initial feedback and protocol development. After these meetings, PES leadership and Embryo+™ researchers decided that the unique nature of the project merited a PPI evaluation. Subsequent evaluation of engagement efforts occurred by reviewing the PES reports for the Embryo+™ researchers, conducting two recorded web-based discussion meetings with the PES (summer 2020; meeting 1 n = 7; meeting 2 n = 6), and a brief survey (n = 13). The discussion meetings provided an opportunity for the PES members to define engagement themes through consensus via verbal agreement to the studio director's periodic summaries during the discussions. Combining survey results and PES themes allowed for a broad discussion for meaningful engagement. The Embryo+™ researchers established trust with the patients by changing some of their language in response to patient suggestions, allowing for unintended ethical conversations, and implementing the patient developed protocols. Overall, the patient experts thought this project was very meaningful and valuable, quantified by a mean loyalty score 89.43 (s.d. 10.29).ConclusionBench science researchers may need additional PPI training prior to engaging with patient groups. PPI in this project was successful in large part due to this training, where the director emphasized the importance of gaining trust with the patients. The researchers applied what they learned and several examples of how to develop trust with patients are discussed. If trust is established, PPI in an ethically charged, basic science research study can be both valuable and successful.
| S-EPMC8115861 | biostudies-literature
Project description:BackgroundLay involvement in implementation of research evidence into practice may include using research findings to guide individual care, as well as involvement in research processes and policy development. Little is known about the conditions required for such involvement.AimTo assess stroke survivors' research awareness, use of research evidence in their own care and readiness to be involved in research processes.MethodsCross sectional survey of stroke survivors participating in population-based stroke registers in six European centres.ResultsThe response rate was 74% (481/647). Reasons for participation in register research included responding to clinician request (56%) and to 'give something back' (19%); however, 20% were unaware that they were participating in a stroke register. Research awareness was generally low: 57% did not know the purpose of the register they had been recruited to; 73% reported not having received results from the register they took part in; 60% did not know about any research on stroke care. Few participants (7.6%) used research evidence during their consultations with a doctor. The 34% of participants who were interested in being involved in research were younger, more highly educated and already research aware.ConclusionsAcross Europe, stroke survivors already participating in research appear ill informed about stroke research. Researchers, healthcare professionals and patient associations need to improve how research results are communicated to patient populations and research participants, and to raise awareness of the relationship between research evidence and increased quality of care.
| S-EPMC5810710 | biostudies-literature
Project description:ImportanceMany recent advances in pediatric concussion care are implemented by specialists; however, children with concussion receive care across varied locations. Thus, it is critical to identify which children have access to the most up-to-date treatment strategies.ObjectiveTo evaluate differences in the sociodemographic and community characteristics of pediatric patients who sought care for concussion across various points of entry into a regional health care network.Design, setting, and participantsThis cross-sectional study included children seen for concussions across a regional US health care network from January 1, 2017, to August 4, 2023. Pediatric patients aged 0 to 18 years who received an International Statistical Classification of Diseases and Related Health Problems, Tenth Revision, Clinical Modification code for concussion were included. The study took place at emergency department (ED) and outpatient (primary care [PC] and specialty care [SC]) settings.ExposuresAge at visit, biological sex, parent-identified race and ethnicity, payer type, median income and percentage of adults with a bachelor's degree for home zip code, and overall and subdomain Child Opportunity Index (COI) score based on patient address.Main outcomes and measuresThe association of exposures with point of entry of ED, PC, and SC were examined in both bivariate analysis and a multinomial logistic regression.ResultsOverall, 15 631 patients were included in the study (median [IQR] age, 13 [11-15] years; 7879 [50.4%] male; 1055 [6.7%] Hispanic, 2865 [18.3%] non-Hispanic Black, and 9887 [63.7%] non-Hispanic White individuals). Race and ethnicity were significantly different across settings (1485 patients [50.0%] seen in the ED were non-Hispanic Black vs 1012 [12.0%] in PC and 368 [8.7%] in SC; P < .001) as was insurance status (1562 patients [52.6%] seen in the ED possessed public insurance vs 1624 [19.3%] in PC and 683 [16.1%] in SC; P < .001). Overall and individual COI subdomain scores were also significantly different between settings (overall COI median [IQR]: ED, 30 [9-71]; PC, 87 [68-95]; SC, 87 [69-95]; P < .001). Race, insurance status, and overall COI had the strongest associations with point of entry in the multivariable model (eg, non-Hispanic Black patients seen in the ED compared with non-Hispanic White patients: odds ratio, 2.03; 95% CI, 1.69-2.45).Conclusions and relevanceIn this cross-sectional study, children with concussion seen in the ED setting were more likely to be non-Hispanic Black, have public insurance, and have a lower Child Opportunity Index compared with children cared for in the PC or SC setting. This highlights the importance of providing education and training for ED clinicians as well as establishing up-to-date community-level resources to optimize care delivery for pediatric patients with concussion at high risk of care inequities.
| S-EPMC11525599 | biostudies-literature
Project description:Background'Patient engagement' involves meaningful collaboration between researchers and 'patient partners' to co-create research. It helps ensure that research being conducted is relevant to its ultimate end-users. Although patient engagement within clinical research has been well documented, the prevalence and effects of patient engagement in translational preclinical laboratory research remain unclear. The aim of this scoping review is to present current patient engagement activities reported in preclinical laboratory research.MethodsMEDLINE, Embase, and grey literature were systematically searched from inception to April 2021. Studies that described or investigated patient engagement in preclinical laboratory research were included. Patient engagement activities where patients (i.e. patients, family members, caregivers or community members) provided input, or consultation on at least one element of the research process were eligible for inclusion. Study characteristics and outcomes were extracted and organized thematically.Findings32 reports were included (30 primary studies, 1 narrative review, and 1 researcher guide). Most studies engaged patients at the education or priority setting stages (n=26). The most frequently reported benefit of patient engagement was 'providing a mutual learning opportunity'. Reported barriers to patient engagement reflected concerns around 'differences in knowledge and research experience' and how this may challenge communication and limit meaningful collaboration.InterpretationPatient engagement is feasible and beneficial for preclinical laboratory research. Future work should focus on assessing the impacts of patient engagement in this area of research.FundingNone.
| S-EPMC8318845 | biostudies-literature
Project description:Purpose of Review:Patient engagement in research is increasingly recognized as an important component of the research process and may facilitate translation of research findings. To heighten awareness on this important topic, this review presents opportunities and challenges of patient engagement in research, drawing on specific examples from 4 areas of Canadian kidney research conducted by New Investigators in the Kidney Research Scientist Core Education and National Training (KRESCENT) Program. Sources of Information:Research expertise, published reports, peer-reviewed articles, and research funding body websites. Methods:In this review, the definition, purpose, and potential benefits of patient engagement in research are discussed. Approaches toward patient engagement that may help with translation and uptake of research findings into clinical practice are highlighted. Opportunities and challenges of patient engagement are presented in both basic science and clinical research with the following examples of kidney research: (1) precision care in focal and segmental glomerulosclerosis, (2) systems biology approaches to improve management of chronic kidney disease and enhance kidney graft survival, (3) reducing the incidence of suboptimal dialysis initiation, and (4) use of patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) in kidney practice. Key Findings:Clinical research affords more obvious opportunities for patient engagement. The most obvious step at which to engage patients is in the setting of research priorities. Engagement at all stages of the research cycle may prove to be more challenging, and requires a detailed plan, along with funds and infrastructure to ensure that it is not merely tokenistic. Basic science research is several steps removed from the clinical application and involves complex scientific concepts, which makes patient engagement inherently more difficult. Limitations:This is a narrative review of the literature that has been partly influenced by the perspectives and experiences of the authors and focuses on research conducted by the authors. The evidence base to support the suggested benefits of patient engagement in research is currently limited. Implications:The formal incorporation of patients' priorities, perspectives, and experiences is now recognized as a key component of the research process. If patients and researchers are able to effectively work together, this could enhance research quality and efficiency. To effectively engage patients, proper infrastructure and dedicated funding are needed. Going forward, a rigorous evaluation of patient engagement strategies and their effectiveness will be needed.
| S-EPMC5714072 | biostudies-literature
Project description: Not available
| S-EPMC6472461 | biostudies-literature
Project description:ImportancePediatric concussion affects millions and results in heterogeneous outcomes and recovery trajectories. Given favorable outcome for most children, it is useful to understand characteristics of positive outcome to promote full recovery in all children.ObjectiveTo document the timeframe of recovery to optimal functioning, defined comprehensively across motor-physical, cognitive, socioemotional, and resilience-support domains, after concussion among children ages 8 to 16 years.Design, setting, and participantsFor this prospective cohort study, children ages 8 to 16.99 years with a concussion or orthopedic injury (OI) were recruited between September 2016 and July 2019 from 5 Pediatric Emergency Research Canada emergency departments and assessed approximately 10 days, 3 months, and 6 months after their injury. Data were analyzed from January 29, 2024, to January 11, 2025.ExposureConcussion.Main outcomes and measuresParticipants completed self-report and direct assessment measures of postconcussive symptoms, physical activity and function, balance, cognitive function, quality of life, resilience, and social support. The main outcome was optimal functioning, which was derived from 11 variables and criteria indicative of absence of impairment and average or above functioning in each domain (overall score, 0-11; higher score indicates better function). A longitudinal, multivariable, cumulative probability ordinal regression model was fitted to examine factors associated with optimal functioning.ResultsA total of 967 children (median [IQR] age, 12.3 [10.5-14.3] years; 562 [58.1%] male) were enrolled, including 633 children with a concussion and 334 children with an OI. The median (IQR) optimal functioning scores for the OI group were 6.0 (4.0-8.0) at 10 days, 7.0 (5.0-9.0) at 3 months, and 7 (5.0-9.0) at 6 months, compared with 4.0 (2.0-6.0) at 10 days, 6.0 (4.0-9.0) at 3 months, and 7.0 (4.0-9.0) at 6 months in the concussion group. The 3 main variables (time, sex, and group) were significantly associated with optimal functioning, as were all 2-way interactions. Time was the strongest factor associated with optimal functioning (Wald χ258 = 485.11; P < .001), followed by group (Wald χ26 = 95.10; P < .001), and sex (Wald χ26 = 23.19; P < .001). At the 10-day follow-up, concussion was associated with lower optimal functioning than OI among females (odds ratio [OR], 0.24 [95% CI, 0.16-0.36]) and males (OR, 0.37 [95% CI, 0.26-0.53]). This difference persisted for females at 3 months (OR, 0.57 [95% CI, 0.35-0.93]) but not for males. Optimal functioning was comparable at 6 months.Conclusions and relevanceIn this prospective cohort study of children with concussion, achieving optimal functioning levels across physical, cognitive, socioemotional, and resilience domains took 3 months or more, especially for girls with concussion. Multiple domains of outcome need to be taken into account when considering full recovery and optimal function after pediatric concussion.
| S-EPMC11923687 | biostudies-literature