Adverse Childhood Experiences and Patient-Reported Outcome Measures in Critically Ill Children
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SUBMITTER: Rodenbough A
PROVIDER: S-EPMC9326064 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:ObjectiveThe objectives of the study were to (1) map questions in epilepsy-specific patient-reported outcome measures (PROMs) of children's health-related quality of life (HRQoL) to a proposed core outcome set (COS) for childhood epilepsy research and (2) gain insight into the acceptability of two leading candidate PROMs.MethodWe identified 11 epilepsy-specific PROMs of children's HRQoL (17 questionnaire versions) in a previous systematic review. Each item from the PROMs was mapped to 38 discrete outcomes across 10 domains of the COS: seizures, sleep, social functioning, mental health, cognition, physical functioning, behavior, adverse events, family life, and global quality of life. We consulted with three children with epilepsy and six parents of children with epilepsy in Patient Public Involvement and Engagement (PPIE) work to gain an understanding of the acceptability of the two leading PROMs from our review of measurement properties: Quality of Life in Childhood Epilepsy (QOLCE-55) and Health-Related Quality of Life Measure for Children with Epilepsy (CHEQOL).ResultsSocial Functioning is covered by all PROMs except DISABKIDS and G-QOLCE and Mental Health is covered by all PROMs except G-QOLCE and Hague Restrictions in Childhood Epilepsy Scale (HARCES). Only two PROMs (Epilepsy and Learning Disability Quality of Life (ELDQOL) and Glasgow Epilepsy Outcome Scale (GEOS-YP)) have items that cover the Seizure domain. The QOLCE-55 includes items that cover the domains of Physical Functioning, Social Functioning, Behavior, Mental Health, and Cognition. The CHEQOL parent and child versions cover the same domains as QOLCE-55 except for Physical Functioning and Behavior, and the child version has one item that covers the discrete outcome of Overall Quality of Life and one item that covers the discrete outcome of Relationship with parents and siblings. The QOLCE-55 parent version was acceptable to the parents we consulted with, and CHEQOL parent and child versions were described as acceptable to our child and parent advisory panel members.SignificanceMapping items from existing epilepsy-specific PROMs for children is an important step in operationalizing our COS for childhood epilepsy research, alongside evaluation of their measurement properties. Two leading PROMS, QOLCE-55 and CHEQOL, cover a wide range of domains from our COS and would likely be used in conjunction with assessment tools selected for specific study objectives. The PPIE work provided practical insights into the administration and acceptability of candidate PROMs in appropriate context. We promote our COS as a framework for selecting outcomes and PROMs for future childhood epilepsy evaluative research.
| S-EPMC7689576 | biostudies-literature
Project description:Surgical procedures incorporating a cosmetic element such as septorhinoplasty and otoplasty are currently under threat in the National Health Service (NHS) as they are deemed to be procedures of 'limited clinical benefit' by many primary care providers. Patient reported outcome measures (PROMs), which assess the quality of care delivered from the patients' perspective, are becoming increasingly important in documenting the effectiveness of such procedures.The Rhinoplasty Outcomes Evaluation (ROE) questionnaire, a validated PROM tool, was used to assess patient satisfaction in 141 patients undergoing septorhinoplasty surgery over a 90-month period at the University Hospital Southampton NHS Foundation Trust.Overall, 100 patients with a mean follow-up period of 36 months completed the study. The mean ROE score was 73.3%. In addition, 75% of patients questioned were happy with the final result of their operation and 83% would undergo the procedure again if required. These benefits occurred irrespective of age, sex and primary versus revision surgery, and were maintained for up to 71 months following surgery.This study has shown that patients are generally satisfied with their functional and cosmetic outcomes following septorhinoplasty surgery. These results help support the case for septorhinoplasty surgery to continue being funded as an NHS procedure.
| S-EPMC4473903 | biostudies-other
Project description:Patient Reported Outcome Measures (PROM) evoke measurements that allow capturing patients' perspectives on their condition. In endometriosis care, physicians' understanding of the effect of the disease and the treatment on patients is often poor. The use of PROMs in endometriosis clinical practice can facilitate patient-provider communication and the implementation of patient-centered care, improve patients' quality of life, as well as provide a tool for patients' self-management of the disease. Today, PROMs are extensively used in research and clinical trials, however they are barely used in clinical practice. The development of digital tools facilitating capturing PROMs can contribute to their use by physicians in routine endometriosis care. However, all PROMs are not adapted to be used in routine care in the context of endometriosis. The objective of this study was to present a catalogue of available PROMs for routine endometriosis care and evaluate them according to selected criteria. To do so, we explored the different PROMs currently in the literature. Consequently, 48 PROM were identified as tools used to evaluate various dimensions of the impact of endometriosis on patients. The selected PROMs were evaluated for their potential to be used as a standard in clinical practice in endometriosis. The selected catalogue of PROMs is the starting point for the integration of digital tools to capture PROMs and the development of patient-centered dashboards to be used by patients and clinicians in endometriosis care and self-management to improve care processes, patient satisfaction, quality of life, and outcomes.
| S-EPMC8585017 | biostudies-literature
Project description:Increasing numbers of children and adults with chronic disease status highlight the need for a value-based healthcare system. Patient-reported outcome measures (PROMs) are essential to value-based healthcare, yet it remains unclear how they relate to clinical outcomes such as health and daily functioning. We aimed to assess the added value of self-reported PROMs for health status (HS) and quality of life (QoL) in the long-term follow-up of children with foregut anomalies. We evaluated data of PROMs for HS and/or QoL among eight-year-olds born with congenital diaphragmatic hernia (CDH), esophageal atresia (EA), or congenital lung malformations (CLM), collected within the infrastructure of a multidisciplinary, longitudinal follow-up program. Clinical outcomes were categorized into different outcome domains, and their relationships with self-reported HS and QoL were assessed through multivariable linear regression analyses. A total of 220 children completed HS and/or QoL self-reports. In children with CDH and EA, lower cognition was significantly associated with lower self-reported HS. Due to the low number of cases, multivariable linear regression analysis was not possible in children with CLM. HS, QoL, and clinical outcomes represent different aspects of a child's wellbeing and should be measured simultaneously to facilitate a more holistic approach to clinical decision making.
| S-EPMC8307606 | biostudies-literature
Project description:ObjectiveTo determine the association between electroencephalographic seizure (ES) and electroencephalographic (ESE) exposure and unfavorable neurobehavioral outcomes in critically ill children with acute encephalopathy.MethodsThis was a prospective cohort study of acutely encephalopathic critically ill children undergoing CEEG. ES exposure was assessed as: (1) no ES/ESE, (2) ES, or (3) ESE. Outcomes assessed at discharge included the Glasgow Outcome Scale - Extended Pediatric Version (GOS-E-Peds), Pediatric Cerebral Performance Category (PCPC), and mortality. Unfavorable outcome was defined as a reduction in GOS-E-Peds or PCPC score from pre-admission to discharge. Stepwise selection was used to generate multivariate logistic regression models that assessed associations between ES exposure and outcomes while adjusting for multiple other variables.ResultsAmong 719 consecutive critically ill subjects, there was no evidence of ES in 535 subjects (74.4%), ES in 140 subjects (19.5%), and ESE in 44 subjects (6.1%). The final multivariable logistic regression analyses included ES exposure, age dichotomized at 1-year, acute encephalopathy category, initial EEG background category, comatose at CEEG initiation, and the Pediatric Index of Mortality 2 score. There was an association between ESE and unfavorable GOS-E-Peds (Odds Ratio 2.21, 95%CI 1.07-4.54) and PCPC (Odds Ratio 2.17, 95%CI 1.05-4.51) but not mortality. There was no association between ES and unfavorable outcome or mortality.ConclusionsAmong acutely encephalopathic critically ill children, there was an association between ESE and unfavorable neurobehavioral outcomes, but no association between ESE and mortality. ES exposure was not associated with unfavorable neurobehavioral outcomes or mortality.
| S-EPMC8205469 | biostudies-literature
Project description:BACKGROUND:PROMs can help healthcare professionals gain an improved understanding of patients' physical burdens, functional levels, and (health-related) quality of life throughout disease and medical treatment. The aim of this study was to investigate the barriers and potential opportunities PROMs may present in a haematological outpatient clinic from three different perspectives: patients, nurses and haematologists. METHODS:The present study synthesizes three previously published studies that separately explored the experiences of patients, nurses and haematologists when implementing PROMs. The studies were all guided by the qualitative methodology Interpretive Description, including a focused ethnographic approach, to develop implications for future practice. RESULTS:The overall themes that emerged from the analysis were "Structural similarities influence the adoption of PROMs" and "Different perspectives on the potential of PROMs." CONCLUSION:Across the different user groups in the haematological outpatient clinic, the use of PROMs was thwarted due to an unquestioned commitment to biomedical knowledge and the system's rationality and norms: PROM data was not used in patient consultations. Nurses and haematologists expressed different preferences related to potential future PROMs and different objectives for PROMs in clinical practice. From the different perspectives of the patients, nurses and haematologists, PROMs were not compatible with clinical practice. Further research is recommended to develop PROMs validated for use in haematological outpatient clinics. Moreover, implementation strategies adjusted to the structural barriers of the system are crucial.
| S-EPMC7593370 | biostudies-literature
Project description:BackgroundThe use of patient-reported outcome measures (PROMs) to provide healthcare professionals with peer benchmarked feedback is growing. However, there is little evidence on the opinions of professionals on the value of this information in practice. The purpose of this research is to explore surgeon's experiences of receiving peer benchmarked PROMs feedback and to examine whether this information led to changes in their practice.MethodsThis qualitative research employed a Framework approach. Semi-structured interviews were undertaken with surgeons who received peer benchmarked PROMs feedback. The participants included eleven consultant orthopaedic surgeons in the Republic of Ireland.ResultsFive themes were identified: conceptual, methodological, practical, attitudinal, and impact. A typology was developed based on the attitudinal and impact themes from which three distinct groups emerged. 'Advocates' had positive attitudes towards PROMs and confirmed that the information promoted a self-reflective process. 'Converts' were uncertain about the value of PROMs, which reduced their inclination to use the data. 'Sceptics' had negative attitudes towards PROMs and claimed that the information had no impact on their behaviour. The conceptual, methodological and practical factors were linked to the typology.ConclusionSurgeons had mixed opinions on the value of peer benchmarked PROMs data. Many appreciated the feedback as it reassured them that their practice was similar to their peers. However, PROMs information alone was considered insufficient to help identify opportunities for quality improvements. The reasons for the observed reluctance of participants to embrace PROMs can be categorised into conceptual, methodological, and practical factors. Policy makers and researchers need to increase professionals' awareness of the numerous purposes and benefits of using PROMs, challenge the current methods to measure performance using PROMs, and reduce the burden of data collection and information dissemination on routine practice.
| S-EPMC4227108 | biostudies-literature
Project description:ObjectivesThe present study aimed to explore the impact of different periodontal surgical treatments on the quality of life and postoperative morbidity.Materials and methodsThe present study is a single-center, prospective, observational cohort trial. One hundred fifty-five patients, referred to the Periodontal Department of Bologna University who needed periodontal surgical treatment, were recruited. The self-reported perception of the postoperative course was assessed using the following anonymous questionnaires: Italian oral health impact profile (I-OHIP-14), visual analog scale (VAS) to evaluate the intensity of the pain, and 5-point Likert scale.ResultsPatients reported a mean OHIP-14 total score of 9.87±8.5 (range 0-42), significantly influenced by the female sex, flap extension, and periodontal dressing. A mean VAS score of 2.96±2.39 (range 0-9) was calculated, and was found to be influenced by the presence of vertical releasing incisions and palatal flap extension. Of the 155 subjects, 40 (25.8%) patients reported bleeding as a post-surgical complication, 96 (61.9%) swelling, 105 (67.7%) eating discomfort, and 44 (28.4%) reported speech discomfort.ConclusionsWithin the limitations of the nature of the present study, periodontal surgical procedures have a low impact on patients' quality of life evaluated through the OHIP-14 and VAS pain questionnaires.Clinical relevancePeriodontal surgical procedures are safe procedures, with a limited duration of postoperative discomfort as well as the incidence of complications.
| S-EPMC10713745 | biostudies-literature
Project description:OBJECTIVE:Guidelines recommend that encephalopathic critically ill children undergo continuous electroencephalographic (CEEG) monitoring for electrographic seizure (ES) identification and management. However, limited data exist on antiseizure medication (ASM) safety for ES treatment in critically ill children. METHODS:We performed a single-center prospective observational study of encephalopathic critically ill children undergoing CEEG. Clinical and EEG features and ASM utilization patterns were evaluated. We determined the incidence, types, and risk factors for adverse events associated with ASM administration. RESULTS:A total of 472 consecutive critically ill children undergoing CEEG were enrolled. ES occurred in 131 children (28%). Clinicians administered ASM to 108 children with ES (82%). ES terminated after the initial ASM in 38% of patients who received one ASM, after the second ASM in 35% of patients who received two ASMs, after the third ASM in 50% of patients who received three ASMs, and after the fourth ASM in 53% of patients who received four ASMs. Thirty patients (28%) received anesthetic infusions for ES management. Adverse events occurred in 18 patients (17%). Adverse effects were expected and resolved in all patients, and they were generally serious (in 15 patients) and definitely related (in 12 patients). Adverse events were rare in patients with acute symptomatic seizures requiring only one to two ASMs for treatment, but were more common in children with epilepsy, ictal-interictal continuum EEG patterns, or patients requiring more extensive ASM management. SIGNIFICANCE:ES ceased after one ASM in only 38% of critically ill children but ceased after two ASMs in 73% of critically ill children. Thus, ES management was often accomplished with readily available medications, but optimization of multistep ES management strategies might be beneficial. Adverse events were rare and manageable in children with acute symptomatic seizures requiring only one to two ASMs for treatment. Future studies are needed to determine whether management of acute symptomatic ES improves neurobehavioral outcomes.
| S-EPMC6786930 | biostudies-literature
Project description:BackgroundChildhood uveitis is a collection of chronic rare inflammatory eye disorders which result in visual loss in at least one eye of one fifth of affected children. Despite the introduction of novel systemic immunochemotherapies, it remains a blinding disease. We have undertaken a systematic review of outcome measures used in interventional trials of children with, or at risk of uveitis, in order to investigate metric quality and heterogeneity, as possible barriers to the translation of clinical research into improved outcomes.MethodsSystematic review of trials registered within databases approved by the International Committee of Medical Journal Editors (ICMJE). Eligible trials for were those which involved participants aged under 18?years with or at risk of non-infectious uveitis. Data on date of study commencement, uveitis site, inclusion age criteria, and outcome measure characteristics including type, dimension and quality were extracted independently by two authors. Quality was determined using the reproducibility, validity and age-appropriateness of the metric.ResultsOf 917 identified trials, 57 were eligible for inclusion. Twenty?different domains across five dimensions were used as primary outcome measures. The structure most commonly used was multiple separate outcome measures. In a quarter of studies, outcomes were assessed less than 3?months following the intervention. Disease activity was the most commonly assessed dimension, with only 30 studies (60%) using reproducible methodologies to assess activity. Only 2/12 (18%) studies on intermediate or posterior uveitis used reproducible activity grading schemes. Of 18 studies involving children aged under 6?years old which used outcome measures related to visual function, only 8/18 (44%) described the use of age-appropriate acuity assessment measures. None of the studies used a vision related quality of life metrics which had been validated for use in childhood.ConclusionThis review of outcome measures in childhood uveitis interventional trials has identified under-utilisation of reproducible or child appropriate measures, and considerable heterogeneity in metric type, and structure. Clinicians and researchers interested in improving outcomes for affected children must identify a patient and family centred core outcome set, and work to validate both objective and patient (or proxy) reported disease age appropriate outcome measures.
| S-EPMC6555041 | biostudies-literature