Identifying Important Clinical Symptoms in Children With Severe Neurological Impairment Using Parent-Reported Outcomes of Symptoms.
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ABSTRACT:
SUBMITTER: Feinstein JA
PROVIDER: S-EPMC7551220 | biostudies-literature | 2020 Nov
REPOSITORIES: biostudies-literature
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Identifying Important Clinical Symptoms in Children With Severe Neurological Impairment Using Parent-Reported Outcomes of Symptoms.
Feinstein James A JA Feudtner Chris C Valuck Robert J RJ Fairclough Diane L DL Holstein Jacqueline A JA Samay Sadaf S Kempe Allison A
JAMA pediatrics 20201101 11
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Project description:ImportanceChildren with severe neurological impairment (SNI) often take multiple medications to treat problematic symptoms. However, for children who cannot self-report symptoms, no system exists to assess multiple symptoms and their association with medication use.ObjectivesTo assess the prevalence of 28 distinct symptoms, test whether higher global symptom scores (GSS) were associated with use of more medications, and assess the associations between specific symptoms and medications.Design, setting, and participantsThis cross-sectional study was conducted between April 1, 2019, and December 31, 2019, using structured parent-reported symptom data paired with clinical and pharmacy data, at a single-center, large, hospital-based special health care needs clinic. Participants included children aged 1 to 18 years with SNI and 5 or more prescribed medications. Data analysis was performed from April to June 2020.ExposureDuring routine clinical visits, parent-reported symptoms were collected using the validated 28-symptom Memorial Symptom Assessment Scale (MSAS) and merged with clinical and pharmacy data.Main outcomes and measuresSymptom prevalence, counts, and GSS (scored 0-100, with 100 being the worst) were calculated, and the association of GSS with medications was examined. To evaluate associations between symptom-medication pairs, the proportion of patients with a symptom who used a medication class or specific medication was calculated.ResultsOf 100 patients, 55.0% were boys, the median (interquartile range [IQR]) age was 9 (5-12) years, 62.0% had 3 or more complex chronic conditions, 76.0% took 10 or more medications, and none were able to complete the MSAS themselves. Parents reported a median (IQR) of 7 (4-10) concurrent active symptoms. The median (IQR) GSS was 12.1 (5.4-20.8) (range, 0.0-41.2) and the GSS was 9.8 points (95% CI, 5.5-14.1 points) higher for those with worse recent health than usual. Irritability (65.0%), insomnia (55.0%), and pain (54.0%) were the most prevalent symptoms. Each 10-point GSS increase was associated with 12% (95% CI, 4%-19%) higher medication counts, adjusted for age and complex chronic condition count. Among the 54.0% of children with reported pain, 61.0% were prescribed an analgesic.Conclusions and relevanceThese findings suggest that children with SNI reportedly experience substantial symptom burdens and that higher symptom scores are associated with increased medication use. Paired symptom-medication data may help clinicians identify targets for personalized symptom management, including underrecognized or undertreated symptoms.
| S-EPMC7733159 | biostudies-literature
Project description:ContextChildren with severe neurological impairment and polypharmacy are exposed to anticholinergic (AC) medications that may have anticholinergic side effects, but this is understudied. Anticholinergic Cognitive Burden (ACB) scores measure total anticholinergic burden for a medication regimen, and scores ≥3 have been associated with increased morbidity and mortality in adults.ObjectiveWe assessed the relationship between ACB scores and parent-reported anticholinergic symptoms in children.MethodsCross-sectional study of patients one to 18 years-old with ICD-defined severe neurological impairment and polypharmacy. At routine clinical visits, total ACB scores were computed for all medications. Parent-reported AC symptoms (constipation, drowsiness, difficulty concentrating, dry mouth, or urinary problems) were assessed. Multivariable logistic regression was used to test the association between total ACB scores ≥3 for scheduled medications and the presence of AC symptoms, adjusted for age and recent acute healthcare utilization.ResultsAmong 123 unique patients, 87% were prescribed AC medications. Common AC medication classes included: systemic antihistamines (64%), anxiolytics (53%), antidepressants (30%), H2 blockers (22%), and muscle relaxants (20%). Total ACB scores ≥3 were observed in 44% for scheduled medications and in 63% of patients for scheduled plus PRN medications. Total ACB scores ≥3 were significantly associated with an increased odds of ≥1 anticholinergic symptoms for scheduled medications (OR: 3.1; 95% CI: 1.4, 6.7) and for scheduled plus PRN medications (OR: 2.9; 95% CI: 1.3, 6.4).ConclusionIf replicated in larger populations, the association between elevated total ACB scores and anticholinergic side effects in children should prompt clinicians to consider deprescribing potentially unneeded anticholinergic medications.
| S-EPMC9840664 | biostudies-literature
Project description:ObjectivePain's causes in children with severe cognitive impairment may be challenging to diagnose. This study aimed to investigate if there is a relationship between pain causes and the age of children.MethodsWe conducted a multicenter retrospective study in three Italian Pediatric Units. Eligible subjects were patients from 1 to 18 years with severe neurological impairment. We collected data regarding diagnoses, pain causes and medical or surgical procedures. The timing of pain episodes was categorized into age-related periods: infants and toddlers (0-24 months), preschool children (3-5 years), schoolchildren (6-12 years), and adolescents (13-17 years).ResultsEighty children with severe neurological impairment were enrolled. The mean age was 11 years (±5.8). Gastroenterological pain was most common in the first years of life (p = 0.004), while orthopaedic and tooth pain was the most typical in schoolchildren and adolescents (p = 0.001 and p = 0.02). Concerning surgical procedures, PEG placement and gastric fundoplication were significantly more common in the first 5 years of age (p = 0.03), and heart surgery was typical of infants (p = 0.04). Orthopaedic surgery was more commonly reported in older children and adolescents (p < 0.001).ConclusionsSome causes of pain are more frequent in children with severe neurological impairment in defined age-related periods. Specific age-related pain frequencies may help physicians in the diagnostic approach.
| S-EPMC10950906 | biostudies-literature
Project description:BackgroundThere is a paucity of tools that can be used in routine clinical practice to assess the psychosocial impact of Disorders/Differences of Sex Development (DSD) on parents and children.ObjectiveTo evaluate the use of short Parent Self-Report and Parent Proxy-Report questionnaires that can be used in the outpatient setting.MethodsPreviously validated DSD-specific and generic items were combined to develop a Parent Self-Report questionnaire and a Parent Proxy-Report questionnaire for children under 7 years. Of 111 children approached at one tertiary paediatric hospital, the parents of 95 children (86%) with DSD or other Endocrine conditions completed these questionnaires.ResultsQuestionnaires took under 10 min to complete and were found to be easy to understand. Compared to reference, fathers of children with DSD reported less stress associated with Clinic Visits (p = 0.02) and managing their child's Medication (p = 0.04). However, parents of children with either DSD or other Endocrine conditions reported more symptoms of Depression (p = 0.03). Mothers of children with DSD reported greater Future Concerns in relation to their child's condition (median SDS - 0.28; range - 2.14, 1.73) than mothers of children with other Endocrine conditions (SDS 1.17; - 2.00, 1.73) (p = 0.02). Similarly, fathers of children with DSD expressed greater Future Concerns (median SDS -1.60; - 4.21, 1.00) than fathers of children with other Endocrine conditions (SDS 0.48; - 2.13, 1.52) (p = 0.04).ConclusionDSD was associated with greater parental concerns over the child's future than other Endocrine conditions. Brief parent-report tools in DSD can be routinely used in the outpatient setting to assess and monitor parent and patient needs.
| S-EPMC7020572 | biostudies-literature
Project description:BackgroundPain is the most common symptom reported by caregivers of children with severe neurological impairment (SNI), a descriptive term for children with disorders affecting the neurological system across multiple domains. In SNI, cognition, communication, and motor skills are impaired and other organ systems are impacted. Pain is difficult to identify and treat in children with SNI because of communication impairment. When a clear cause of pain is not determined, the term "Pain and Irritability of Unknown Origin (PIUO)" is used to describe pain-like behaviours. This study explores the clinical care received by children with SNI admitted to hospital after presenting to the emergency department of a tertiary pediatric hospital with pain or irritability. Findings are compared to the approach suggested in the PIUO pathway, an integrated clinical pathway for identifying and treating underlying causes of pain and irritability in children with complex conditions and limited communication.MethodsRetrospective chart review of children (age 0 to 18 years inclusive) with diagnoses compatible with SNI presenting with pain, irritability, and/or unexplained crying that required hospitalization between January 1st, 2019 and December 31st, 2019. Descriptive statistics were used to analyze the clinical care received by children in whom a source of pain was identified or not. In children for whom no cause of pain was identified, investigations completed were compared to the PIUO pathway.ResultsEight hospital admissions of six unique children were included for data analysis. A cause for pain and irritability was identified and resolved in three patients. In children with PIUO, there were gaps in history taking, physical examination, and investigations that might have allowed a cause of pain and irritability to be found. Pain was assessed using the r-FLACC pain scale and varying medications for pain/irritability were given during each hospital admission.ConclusionChildren with SNI admitted to a tertiary pediatric hospital did not undergo a standardized approach to identifying a cause of pain and irritability. Future efforts should explore the effectiveness of the PIUO pathway, a standardized approach to reducing and resolving pain in children with SNI.
| S-EPMC9531516 | biostudies-literature
Project description:Children with severe neurological impairment (SNI) frequently present feeding problems requiring a close monitoring of their nutritional status. In addition to constant clinical monitoring of body composition and nutritional indexes in these patients, frequent reports of dietary intake and weight gain variations are useful to ensure proper nutritional management. Furthermore, non-oral feeding is often needed to avoid malnutrition or aspiration pneumonia, constantly necessitating medical assistance. Despite their necessity for frequent hospital accesses, these patients' disabilities represent an important obstacle to accessing care, generating anxiety and concern in children and their families. Telemedicine has proven to be a promising instrument for improving pediatric patients' healthcare in several fields. By breaking down geographical and temporal barriers, telehealth may represent a valuable tool to implement in clinical practice, in order to improve patients' outcomes and quality of life. The aim of this narrative review is to provide an overview of the main nutritional issues in children with SNI, the potential implications of telemedicine in their management and the available evidence regarding the effects and benefits of telehealth.
| S-EPMC11366627 | biostudies-literature
Project description:ObjectivesWe aimed to objectify and compare persisting self-reported symptoms in initially hospitalized and non-hospitalized patients after infection with severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) by applying clinical standardized measures.MethodsWe conducted a cross-sectional study of adult patients with confirmed SARS-CoV-2 infection including medical history, neurological examination, blood markers, neuropsychological testing, patient-reported outcome measures (PROMs), and brain magnetic resonance imaging (MRI).ResultsFifty patients with persisting symptoms for at least 4 weeks were included and classified by initial hospitalization status. Median time from SARS-CoV-2 detection to investigation was 29.3 weeks (range 3.3-57.9). Although individual cognitive performance was generally within the normative range in both groups, mostly mild deficits were found in attention, executive functions, and memory. Hospitalized patients performed worse in global cognition, logical reasoning, and processes of verbal memory. In both groups, fatigue severity was associated with reduced performance in attention and psychomotor speed tasks (rs = -0.40, p < 0.05) and reduced quality of life (EQ5D, rs = 0.57, p < 0.001) and with more persisting symptoms (median 3 vs. 6, p < 0.01). PROMs identified fatigue, reduced sleep quality, and increased anxiety and depression in both groups but more pronounced in non-hospitalized patients. Brain MRI revealed microbleeds exclusively in hospitalized patients (n = 5).InterpretationRegardless of initial COVID-19 severity, an individuals' mental and physical health can be severely impaired in the long-term limitedly objectified by clinical standard diagnostic with abnormalities primarily found in hospitalized patients. This needs to be considered when planning rehabilitation therapies and should give rise to new biomarker research.
| S-EPMC8862437 | biostudies-literature
Project description:To compare the incidence of respiratory symptoms and short-term consequences between children with Down syndrome and children from the general population, we conducted a prospective parent-reported observational study. Children with Down syndrome (≤ 18 years) were included between March 2012 and June 2014. Caregivers received a baseline questionnaire with follow-up 1-2 years after inclusion. Caregivers received a weekly questionnaire about respiratory symptoms, fever, antibiotic prescriptions, doctor's visits, and consequences for school and work attendance. Children with Down syndrome were compared to a cohort of the general population ("Kind en Ziek" study) with similar weekly questionnaires. A total of 9,011 childweeks were reported for 116 participants with Down syndrome (75% response rate). The frequency of respiratory symptoms was higher in children with Down syndrome than in children from the general population (30% vs 15.2%). In addition, symptoms subsided later (around 8 vs 5 years of age). The seasonal influence was limited, both in children with Down syndrome and children from the general population. Consequences of respiratory disease were significant in children with Down syndrome compared to children from the general population, with a higher rate of doctor's visits (21.3% vs 11.8%), antibiotic prescriptions (47.8% vs 26.3%), and absenteeism from school (55.5% vs 25.4%) and work (parents, 9.4% vs 8.1%). Conclusion: Children with Down syndrome have a higher frequency of respiratory symptoms and symptoms last until a later age, confirming the impression of professionals and caregivers. Individualized treatment plans might prevent unfavorable consequences of chronic recurrent respiratory disease in children with Down syndrome. What is Known: • Children with Down syndrome have an altered immune system and are prone to a more severe course of respiratory tract infections. • The overall conception is that patients with Down syndrome suffer from respiratory tract infections more often. What is New: • Children with Down syndrome suffer from respiratory symptoms more frequently than children from the general population. • The respiratory symptoms in children with Down syndrome subside at a later age compared to children from the general population.
| S-EPMC9649482 | biostudies-literature
Project description:BackgroundPatient- and parent-reported outcome measures (PROMs) are increasingly used to evaluate the effectiveness of surgery for congenital hand differences (CHDs). Knowledge of an existing outcome measure's ability to assess self-reported health, including psychosocial aspects, can inform the future development and application of PROMs for CHD. However, the extent to which measures used among children with CHD align with common, accepted metrics of self-reported disability remains unexplored.Questions/purposesWe reviewed studies that used PROMs to evaluate surgery for CHD to determine (1) the number of World Health Organization-International Classification of Functioning, Disability and Health (WHO-ICF) domains covered by existing PROMs; (2) the proportion of studies that used PROMs specifically validated among children with CHD; and (3) the proportion of PROMs that targets patients and/or parents.MethodsWe performed a comprehensive review of the literature through a bibliographic search of MEDLINE®, PubMed, and EMBASE from January 1966 to December 2014 to identify articles related to patient outcomes and surgery for CHD. We evaluated the 42 studies that used PROMs to identify the number and type of WHO-ICF domains captured by existing PROMs for CHD and the proportion of studies that use PROMs validated for use among children with CHD. The most common instruments used to measure patient- and parent-reported outcomes after reconstruction for CHD included the Prosthetic Upper Extremity Functional Index (PUFI), Disabilities of the Arm, Shoulder, and Hand questionnaire, Childhood Experience Questionnaire, and Pediatric Quality of Life Inventory.ResultsCurrent PROMs that have been used for CHD covered a mean of 1.3 WHO-ICF domains (SD ± 1.3). Only the Child Behavior Checklist and the Piers-Harris Children's Self-Concept Scale captured all ICF domains (body functions and structures, activity, participation, and environmental factors). The PUFI, the only PROM validated specifically for children with congenital longitudinal and transverse deficiency, was used in only four of 42 studies. Only 13 of the 42 studies assessed patient-reported outcomes, whereas five assessed both patient- and parent-reported outcomes.ConclusionsThe PROMs used to assess patients after CHD surgery do not evaluate all WHO-ICF domains (ie, body structure, body function, environmental factors, and activity and participation) and generally are not validated for children with CHD. Given the psychological and sociological aspects of CHD illness, a PROM that encompasses all components of the biopsychosocial model of illness and validated in children with CHD is desirable.Level of evidenceLevel III, therapeutic study.
| S-EPMC4586230 | biostudies-literature
Project description:IntroductionAs patient-reported outcome measures (PROMs) have become of significant importance in evaluation of care and clinical research, adequately selecting the appropriate instrument is an integral part of paediatric orthopaedic research and clinical practice. This systematic review aims to provide a comprehensive overview of PROMs targeted at children with impairment of the lower limb, and to critically appraise and summarise the quality of their measurement properties by applying the COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) methodology.Method and analysisA systematic search of the MEDLINE and EMBASE databases will be performed to identify relevant publications reporting on the development and/or validation of PROMs used for evaluating children with impairment of the lower extremity. Data extraction and quality assessment of the included studies will be undertaken by two reviewers independently and in accordance with COSMIN guidelines.Ethics and disseminationIt is not necessary to obtain ethical approval for this systematic review. The results will be published in a peer-reviewed journal and will be presented at relevant conferences to enhance information dissemination.Prospero registration numberCRD42021287323.
| S-EPMC9328085 | biostudies-literature