Melatonin treatment in individuals with intellectual disability and chronic insomnia: a randomized placebo-controlled study
Saliva; Middle Aged; Treatment Outcome; Humans; Adolescent; Child Preschool; Double-Blind Method; Time Factors; Central Nervous System Depressants/adverse effects/therapeutic use; Melatonin/adverse effects/therapeutic use; Mental Retardation/epidemiology/psychology; Sleep Initiation and Maintenance Disorders/drug therapy/epidemiology/psychology; Q3 Literature Search; chronic disease; child; female; male; adult; comorbidity; aged; sleep disturbance/disorders; chromosome 18q deletion; MPS III; pharmacologic intervention; melatonin
BACKGROUND: While several small-number or open-label studies suggest that melatonin improves sleep in individuals with intellectual disabilities (ID) with chronic sleep disturbance, a larger randomized control trial is necessary to validate these promising results. METHODS: The effectiveness of melatonin for the treatment of chronic sleep disturbance was assessed in a randomized double-blind placebo-controlled trial with 51 individuals with ID. All of these individuals presented with chronic ideopatic sleep disturbance for more than 1 year. The study consisted of a 1-week baseline, followed by 4 weeks of treatment. Parents or other caregivers recorded lights off time, sleep onset time, night waking, wake up time and epileptic seizures. Endogenous melatonin cycle was measured in saliva before and after treatment. RESULTS: Compared with placebo, melatonin significantly advanced mean sleep onset time by 34 min, decreased mean sleep latency by 29 min, increased mean total sleep time by 48 min, reduced the mean number of times the person awoke during the night by 0.4, decreased the mean duration of these night waking periods by 17 min and advanced endogenous melatonin onset at night by an average of 2.01 h. Lights off time, sleep offset time and the number of nights per week with night waking did not change. Only few minor or temporary adverse reactions and no changes in seizure frequency were reported. CONCLUSIONS: Melatonin treatment improves some aspects of chronic sleep disturbance in individuals with ID.
Braam W; Didden R; Smits M; Curfs L
Journal of Intellectual Disability Research
2008
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1111/j.1365-2788.2007.01016.x" target="_blank" rel="noreferrer noopener">10.1111/j.1365-2788.2007.01016.x</a>
Use of standardized body composition measurements and malnutrition screening tools to detect malnutrition risk and predict clinical outcomes in children with chronic conditions
Adolescent; Child; Female; Humans; Male; Risk Factors; Child Preschool; Anthropometry; Chronic Disease; screening; Child Development; pediatric patients; body composition; Body Composition; clinical outcomes; malnutrition; nutritional risk; Child Nutrition Disorders/diagnosis
BACKGROUND: Better tools are needed to diagnose and identify children at risk of clinical malnutrition. OBJECTIVES: We aimed to compare body composition (BC) and malnutrition screening tools (MSTs) for detecting malnutrition on admission; and examine their ability to predict adverse clinical outcomes [increased length of stay (LOS) and complications] in complex pediatric patients. METHODS: This was a prospective study in children 5-18 y old admitted to a tertiary pediatric hospital (n = 152). MSTs [Pediatric Yorkhill Malnutrition Score (PYMS), Screening Tool for the Assessment of Malnutrition in Pediatrics (STAMP), and Screening Tool for Risk of Impaired Nutritional Status and Growth (STRONGkids)] were completed on admission. Weight, height, and BC [fat mass (FM) and lean mass (LM) by DXA] were measured (n = 118). Anthropometry/BC and MSTs were compared with each other and with clinical outcomes. RESULTS: Subjects were significantly shorter with low LM compared to reference data. Depending on the diagnostic criteria used, 3%-17% were classified as malnourished. Agreement between BC/anthropometric parameters and MSTs was poor. STAMP and STRONGkids identified children with low weight, LM, and height. PYMS, and to a lesser degree STRONGkids, identified children with increased LOS, as did LM compared with weight or height. Patients with complications had lower mean ± SD LM SD scores (-1.38 ± 1.03 compared with -0.74 ± 1.40, P < 0.05). In multivariable models, PYMS high risk and low LM were independent predictors of increased LOS (OR: 3.76; 95% CI: 1.36, 10.35 and OR: 3.69; 95% CI: 1.24, 10.98, respectively). BMI did not predict increased LOS or complications. CONCLUSIONS: LM appears better than weight and height for predicting adverse clinical outcomes in this population. BMI was a poor diagnostic parameter. MSTs performed differently in associations to BC/anthropometry and clinical outcomes. PYMS and LM provided complementary information regarding LOS. Studies on specific patient populations may further clarify the use of these tools and measurements.
Lara-Pompa NE; Hill S; Williams J; Macdonald S; Fawbert K; Valente J; Kennedy K; Shaw V; Wells JC; Fewtrell M
American Journal of Clinical Nutrition
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1093/ajcn/nqaa142" target="_blank" rel="noreferrer noopener">10.1093/ajcn/nqaa142</a>
Parent Perspectives During Hospital Readmissions for Children With Medical Complexity: A Qualitative Study
Newborn Infant; Preschool Child; Academic Medical Centers; Adolescent; Attitude to Health; Child; Chronic Disease; Continuity of Patient Care; Health Knowledge, Attitudes, Practice; Health Services Accessibility; Infant; Interviews as Topic; Male; Parents; Patient Readmission; Qualitative Research
OBJECTIVES: Children with medical complexity (CMC) have high readmission rates, but relatively little is known from the parent perspective regarding care experiences surrounding and factors contributing to readmissions. We aimed to elicit parent perspectives on circumstances surrounding 30-day readmissions for CMC. METHODS: We conducted 20 semistructured interviews with parents of CMC experiencing an unplanned 30-day readmission at 1 academic medical center between December 2016 and January 2018, asking about topics such as previous discharge experiences, medical services and resources, and home environment and social support. Interviews were recorded, professionally transcribed, and analyzed thematically by using a modified grounded theory approach. RESULTS: Children ranged in age from 0 to 15 years, with neurologic complex chronic conditions being predominant (35%). Although the majority of parents did not identify any factors that they perceived to have contributed to readmission, themes emerged regarding challenges associated with chronicity of care and transitions of care that might influence readmissions, including frequency of hospital use, symptom confusion, lack of inpatient continuity, resources needed but not received, and difficulty filling prescriptions. CONCLUSIONS: Parents identified multiple challenges associated with chronicity of medical management and transitions of care for CMC. Future interventions aiming to improve continuity and communication between admissions, ensure that home services are provided when applicable and prescriptions are filled, and provide comprehensive support for families in both the short- and long-term may help improve patient and family experiences while potentially decreasing readmissions.
Leary JC; Krcmar R; Yoon GH; Freund KM; LeClair AM
Hospital Pediatrics
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1542/hpeds.2019-0185" target="_blank" rel="noreferrer noopener">10.1542/hpeds.2019-0185</a>
Using Photo-Elicitation Interviews With Families of Children and Adolescents With Chronic Illness
adolescent; child; chronic disease; Family Attitudes; pediatrics; photo-elicitation interviews; photography
BACKGROUND: Despite the increasing number of studies using photo-elicitation for data collection in qualitative research, there is a need to further explore its use among families of children and adolescents living with chronic illness. OBJECTIVE(S): The aim of this study was to discuss methodological and pragmatic considerations about the use of photo-elicitation interviews (PEIs) for data collection with families of children and adolescents living with chronic illness. METHOD(S): We discussed methodological aspects of using PEIs as reported in publications. A search of the literature was carried out to identify articles presenting information on methodological aspects of the use of PEIs in qualitative data collection, regardless of age group. In pursuit of complementing the evidence with pragmatic considerations of using PEIs, we illustrate with an example of a recent qualitative study of our own that aimed to understand the narratives about hope of families of children and adolescents living with chronic illness. RESULT(S): We synthesized common aspects that need to be considered when using PEIs with different populations: ethical issues, cameras, guidance, and interviews. We also presented our experience of using the PEI technique to collect data from families. Because of our experience, we denominate our method as the "family photo-elicitation interview" (FPEI). Our method goes beyond the PEI technique because it integrates aspects of family nursing theories when conducting interviews with families. FPEIs strengthen family interaction and allow family members to share their perspectives. DISCUSSION: We present a new perspective of PEIs-the FPEI-in the pediatric context. Previous studies have not addressed considerations about using PEIs for families. We hope our results assist novice researchers in planning and implementing FPEIs in qualitative research. We recommend that researchers explore the use of FPEIs in other contexts, such as geriatrics or palliative care. Copyright © 2021 Wolters Kluwer Health, Inc. All rights reserved.
Leite ACAB; Garcia-Vivar C; Nascimento LC
Nursing Research
2021
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<a href="http://doi.org/10.1097/NNR.0000000000000501" target="_blank" rel="noreferrer noopener">10.1097/NNR.0000000000000501</a>
Telemedicine in children with medical complexity on home ventilation during the COVID-19 pandemic
Adolescent; Child; Chronic Disease; COVID-19; Home Care Services; Hospitalization; mechanical ventilation; noninvasive ventilation; Pandemics; Artificial Respiration; respiratory technology; SARS-CoV-2; Telemedicine; telemonitoring
Children with medical complexity (CMC) are patients with one or more complex chronic conditions dependent on medical technologies. In our unit (Pediatric Pulmonology and Respiratory Intermediate Care Unit, Department of Pediatrics, "Bambino Gesù" Children's Hospital and Research Institute), we regularly follow-up CMC patients, particularly children on long-term, invasive (IMV) or noninvasive (NIV), ventilation. Children suffering from chronic diseases and with medical complexity have lost the possibility to go to the hospital during the COVID-19 pandemic. The aim of this article is to describe our experience with telemedicine (teleconsultation [TC] and telemonitoring of ventilator [TM]) in CMC on ventilation. We presented 21 children on long-term ventilation (NIV or IMV) whose planned hospital admission was postponed due to lockdown. A total of 12 healthcare problems were detected during scheduled TCs. Only one problem was not solved by our remote intervention. Specifically, TM has allowed us to change the ventilator parameters and to monitor patients on ventilation remotely. In conclusion, the use of telemedicine in CMC ventilated patients resulted in a feasible tool to avoid in-person visits during the pandemic.
Onofri A; Pavone M; De Santis S; Verrillo E; Caggiano S; Ullmann N; Cutrera R
Pediatric Pulmonology
2021
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<a href="http://doi.org/10.1002/ppul.25289" target="_blank" rel="noreferrer noopener">10.1002/ppul.25289</a>
Patients with chronic conditions and their complex care needs in a tertiary care hospital
chronic disease; Enteral Nutrition; Home health-care agencies; Hospitalization; Palliative care medicine
Introduction: Health care for children with complex chronic conditions (CCC) constitutes an evolving and a challenging part of practices in pediatrics. These children need end-of-life services such as palliative care. The aim of this study was to identify the frequency of patients with CCC among all hospitalized children at our general pediatrics services and to describe the demographics, diagnosis, clinical spectrum, long-term care needs, and mortality data of patients with CCC. Patients and Methods: All hospitalizations in 2018 at the general pediatric services were screened retrospectively. Patients' hospitalization diagnoses, gender, age, comorbid conditions, number of emergency admissions in 2018, intensive care unit needs, mortality rates, and the number of hospitalizations in 2018 were investigated. Result(s): A total of 1591 patients were hospitalized for 2083 times in 2018. Overall, 145 of 1591 patients (9%) had CCC. Patients with CCC were hospitalized for 472 times (23% of all hospitalizations). The number of emergency admissions, the number of hospitalizations in 2018 and the need for intensive care, and the mortality rate during hospitalization for patients with CCC were significantly higher than those for patients without CCC. The median length of hospitalization in patients with CCC was significantly longer. Conclusion(s): Patients with CCC were hospitalized frequently and longer, had increased emergency and PICU admissions, and special long-term care needs. Pediatricians who pioneer care for children with CCC need education, training, and coordinated support to ensure qualified long-term care for these patients. Copyright © 2021 French Society of Pediatrics
Oztek Celebi FZ; Senel S
Archives de Pediatrie
2021
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<a href="http://doi.org/10.1016/j.arcped.2021.05.001" target="_blank" rel="noreferrer noopener">10.1016/j.arcped.2021.05.001</a>
Point-of-Care Complexity Screening Algorithm to Identify Children With Medical Complexity
Algorithms; Child; Child Health Services; Chronic Disease; Disabled Children; Humans; Point-of-Care Systems
OBJECTIVES: For pediatric complex care programs to target enhanced care coordination services to the highest-risk patients, it is critical to accurately identify children with medical complexity (CMC); however, no gold standard definition exists. The aim of this study is to describe a point-of-care screening algorithm to identify CMC with high health care use, a group that may benefit the most from improved care coordination. METHODS: From July 1, 2015, to June 30, 2016 (fiscal year 2016 [FY16]), a medical complexity screening algorithm was implemented by a pediatric complex care program at a single tertiary care center for hospitalized patients at the time of admission. Using the screening algorithm, we categorized inpatients into 1 of 3 groups: CMC, children with special health care needs (CSHCN), or previously healthy (PH) children. Inpatient resource use for FY16 and FY17 encounters was extracted for children screened in FY16. RESULTS: We categorized 2187 inpatients in FY16 into the 3 complexity groups (CMC = 77; CSHCN = 1437; PH children = 673). CMC had more complex chronic conditions (median = 6; interquartile range [IQR] 4-11) than CSHCN (median = 1; IQR 0-2) and PH children (median = 0; IQR 0-0). CMC had greater per-patient and per-encounter hospital use than CSHCN and PH children. CMC and children with ≥4 complex chronic conditions had comparable levels of resource use. CONCLUSIONS: By implementation of a point-of-care screening algorithm, we identified CMC with high health care use. By using this algorithm, it was feasible to identify hospitalized CMC that could benefit from care coordination by a pediatric complex care program.
Parente V; Parnell L; Childers J; Spears T; Jarrett V; Ming D
Hospital Pediatrics
2021
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<a href="http://doi.org/10.1542/hpeds.2020-0066" target="_blank" rel="noreferrer noopener">10.1542/hpeds.2020-0066</a>
Care Coordination Program for Children With Complex Chronic Conditions Discharged From a Rural Tertiary-Care Academic Medical Center
Academic Medical Centers; Adolescent; Child; Preschool Child; Chronic Disease; Hospital Emergency Service; Infant; Patient Discharge; Retrospective Studies
OBJECTIVES: Hospital discharge offers an opportunity to initiate coordination of follow-up care, preventing readmissions or emergency department (ED) recidivism. We evaluated how revisits and costs of care varied in a 12-month period between children in a care coordination program at our center (enrolled after hospital discharge with a tracheostomy or on a ventilator) and children with complex chronic condition discharges who were not enrolled. METHODS: Children ages 1 to 17 years were retrospectively included if they had a hospital discharge in 2017 with an International Classification of Diseases, 10th Revision code meeting complex chronic condition criteria or if they were in active follow-up with the care coordination program. Revisits and total costs of care were compared over 2018 for included patients. RESULTS: Seventy patients in the program were compared with 56 patients in the control group. On bivariate analysis, the median combined number of hospitalizations and ED visits in 2018 was lower among program participants (0 vs 1; P = .033), and program participation was associated with lower median total costs of care in 2018 ($700 vs $3200; P = .024). On multivariable analysis, care coordination program participation was associated with 59% fewer hospitalizations in 2018 (incidence rate ratio: 0.41; 95% confidence interval: 0.23 to 0.75; P = .004) but was not significantly associated with reduced ED visits or costs. CONCLUSIONS: The care coordination program is a robust service spanning the continuum of patient care. We found program participation to be associated with reduced rehospitalization, which is an important driver of costs for children with medical complexity.
Parker CL; Wall B; Tumin D; Stanley R; Warren L; Deal K; Stroud T; Crickmore K; Ledoux M
Hospital Pediatrics
2020
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<a href="http://doi.org/10.1542/hpeds.2019-0323" target="_blank" rel="noreferrer noopener">10.1542/hpeds.2019-0323</a>
Children with medical complexity: A concept analysis
Child; Chronic Disease; children with medical complexity; Data Analysis; nursing care of children with medical complexity; pediatric medical complexity
AIM: The aim of this paper is to conduct a concept analysis on the term, "children with medical complexity." BACKGROUND: Children with medical complexity (CMC) describes pediatric patients with chronic, sustained acuity; however, there is a lack of consensus in the literature regarding its exact meaning, characteristics, and implications. DESIGN: This analysis relied upon the framework described by Walker and Avant. DATA SOURCE: The CINAHL, MEDLINE, and PubMed databases were queried from April 2020 to December 2020 with an initial search of the literature for the keyword, "children with medical complexity" and other associated terms, such as "pediatric medical complexity" and "nursing care of children with medical complexity." REVIEW METHODS: This analysis will explore the concept of CMC and its significance, attributes, antecedents, and consequences. RESULTS: This investigation revealed that CMC are a growing population of pediatric patients who have one or more complex chronic conditions that affect multiple body systems, experience functional limitations, require extensive care coordination from multiple providers, and are dependent upon life-sustaining medical technology. CONCLUSIONS: The findings can serve as a foundation for future work advancing the understanding of the topic of CMC.
Rogers J; Reed MP; Blaine K; Manning H
Nursing Forum
2021
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<a href="http://doi.org/10.1111/nuf.12559" target="_blank" rel="noreferrer noopener">10.1111/nuf.12559</a>
Discontinuation of follow-up care for young people with complex chronic conditions: conceptual definitions and operational components
Adolescent; Aftercare; Chronic Disease; Continuity of patient care: patient transfer; Delivery of health care; Health Personnel; Lost to follow-up; Young adult
BACKGROUND: A substantial proportion of young people with Complex Chronic Conditions (CCCs) experience some degree of discontinuation of follow-up care, which is an umbrella term to describe a broken chain of follow-up. Discontinuation of follow-up care is not clearly defined, and the great plethora of terms used within this field cannot go unnoticed. Terms such as "lost to follow-up", "lapses in care" and "care gaps", are frequently used in published literature, but differences between terms are unclear. Lack of uniformity greatly affects comparability of study findings. The aims of the present study were to (i) provide a systematic overview of terms and definitions used in literature describing discontinuation of follow-up care in young people with CCC's; (ii) to clarify operational components of discontinuation of follow-up care (iii); to develop conceptual definitions and suggested terms to be used; and (iv) to perform an expert-based evaluation of terms and conceptual definitions. METHODS: A systematic literature search performed in PubMed was used to provide an overview of current terms used in literature. Using a modified summative content analysis, operational components were analysed, and conceptual definitions were developed. These conceptual definitions were assessed by an expert panel using a survey. RESULTS: In total, 47 terms and definitions were retrieved, and a core set of operational components was identified. Three main types of discontinuation of follow-up care emerged from the analysis and expert evaluation, conceptually defined as follows: Lost to follow-up care: "No visit within a defined time period and within a defined context, and the patient is currently no longer engaged in follow-up care"; Gap in follow-up care: "Exceeded time interval between clinic visits within a defined context, and the patient is currently engaged in follow-up care"; and Untraceability: "Failure to make contact due to lack of contact information". CONCLUSION: By creating a common vocabulary for discontinuation of follow-up care, the quality of future studies could improve. The conceptual definitions and operational components provide guidance to both researchers and healthcare professionals focusing on discontinuation of follow-up care for young people with CCCs.
Skogby S; Bratt EL; Johansson B; Moons P; Goossens E
BMC Health Services Research
2021
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<a href="http://doi.org/10.1186/s12913-021-07335-x" target="_blank" rel="noreferrer noopener">10.1186/s12913-021-07335-x</a>
Surgical Interventions During End-of-Life Hospitalizations in Children's Hospitals
Adolescent; Age Factors; Biopsy; Catheterization; Child; Chronic Disease; Ethnicity; Hospitalization; Infant; International Classification of Diseases; Newborn Infant; Pediatric Hospitals; Preschool Child; Prosthesis Implantation; Race Factors; Retrospective Studies; Salvage Therapy; Surgical Procedures, Operative; Terminal Care; United States; Young Adult
OBJECTIVES: To characterize patterns of surgery among pediatric patients during terminal hospitalizations in children's hospitals. METHODS: We reviewed patients ≤20 years of age who died among 4 424 886 hospitalizations from January 2013-December 2019 within 49 US children's hospitals in the Pediatric Health Information System database. Surgical procedures, identified by International Classification of Diseases procedure codes, were classified by type and purpose. Descriptive statistics characterized procedures, and hypothesis testing determined if undergoing surgery varied by patient age, race and ethnicity, or the presence of chronic complex conditions (CCCs). RESULTS: Among 33 693 terminal hospitalizations, the majority (n = 30 440, 90.3%) of children were admitted for nontraumatic causes. Of these children, 15 142 (49.7%) underwent surgery during the hospitalization, with the percentage declining over time (P < .001). When surgical procedures were classified according to likely purpose, the most common were to insert or address hardware or catheters (31%), explore or aid in diagnosis (14%), attempt to rescue patient from mortality (13%), or obtain a biopsy (13%). Specific CCC types were associated with undergoing surgery. Surgery during terminal hospitalization was less likely among Hispanic children (47.8%; P < .001), increasingly less likely as patient age increased, and more so for Black, Asian American, and Hispanic patients compared with white patients (P < .001). CONCLUSIONS: Nearly half of children undergo surgery during their terminal hospitalization, and accordingly, pediatric surgical care is an important aspect of end-of-life care in hospital settings. Differences observed across race and ethnicity categories of patients may reflect different preferences for and access to nonhospital-based palliative, hospice, and end-of-life care.
Traynor MD; Antiel RM; Camazine MN; Blinman TA; Nance ML; Eghtesady P; Lam SK; Hall M; Feudtner C
Pediatrics
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1542/peds.2020-047464" target="_blank" rel="noreferrer noopener">10.1542/peds.2020-047464</a>
How Do Children Die in PICUs Nowadays? A Multicenter Study From Spain
brain dead; chronic disease; critically ill; death; neuromuscular disease; pediatric intensive care unit; PICU; respiratory disease
OBJECTIVES: To describe how children currently die in Spanish PICUs, their epidemiologic characteristics and clinical diagnoses. DESIGN: Prospective multicenter observational study. SETTING: Eighteen PICUs participating in the MOdos de Morir en UCI Pediatrica-2 (MOMUCI-2) study in Spain. PATIENTS: Children 1 to 16 years old who died in PICU during 2017 and 2018.None. MEASUREMENTS AND MAIN RESULTS: During the 2-year study period, 250 deaths were recorded. Seventy-three children (29.3%) were younger than 1 year, 131 (52.6%) were between 1 and 12 years old, and 45 (18.1%) were older than 12. One-hundred eighty patients (72%) suffered from an underlying chronic disease, 54 (21.6%) had been admitted to PICU in the past 6 months, and 71 (28.4%) were severely disabled upon admission. Deaths occurred more frequently on the afternoon-night shift (62%) after a median PICU length of stay of 3 days (1-12 d). Nearly half of the patients died (48.8%) after life-sustaining treatment limitation, 71 died (28.4%) despite receiving life-sustaining therapies and cardiopulmonary resuscitation, and 57 (22.8%) were declared brain dead. The most frequent type of life-sustaining treatment limitation was the withdrawal of mechanical ventilation (20.8%), followed by noninitiation of cardiopulmonary resuscitation (18%) and withdrawal of vasoactive drugs (13.7%). Life-sustaining treatment limitation was significantly more frequent in patients with an underlying neurologic-neuromuscular disease, respiratory disease as the cause of admission, a previous admission to PICU in the past 6 months, and severe disability. Multivariate analyses indicated that life-sustaining treatment limitation, chronicity, and poor Pediatric Cerebral Performance Category score were closely related. CONCLUSION(S): Currently, nearly half of the deaths in Spanish PICUs occur after the withdrawal of life-sustaining treatments. These children are more likely to have had previous admissions to the PICU, be severely disabled or to suffer from chronic diseases. Healthcare professionals who treat critically ill children ought to be aware of this situation and should therefore be prepared and trained to provide the best end-of-life care possible.
Agra-Tunas C; Rodriguez-Ruiz E; Rodriguez Merino E
Pediatric Critical Care Medicine
2020
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<a href="http://doi.org/10.1097/PCC.0000000000002359" target="_blank" rel="noreferrer noopener">10.1097/PCC.0000000000002359</a>
Opioid dependence and addiction during opioid treatment of chronic pain
Humans; Analgesics; Models; Chronic disease; Opioid/adverse effects/therapeutic use; Neurological; Physician's Practice Patterns/trends; Brain/drug effects/physiopathology; Opioid-Related Disorders/etiology/physiopathology/prevention & control; Pain/drug therapy/physiopathology/psychology
Throughout the long history of opioid drug use by humans, it has been known that opioids are powerful analgesics, but they can cause addiction. It has also been observed, and is now substantiated by multiple reports and studies, that during opioid treatment of severe and short-term pain, addiction arises only rarely. However, when opioids are extended to patients with chronic pain, and therapeutic opioid use is not confined to patients with severe and short-lived pain, compulsive opioid seeking and addiction arising directly from opioid treatment of pain become more visible. Although the epidemiological evidence base currently available is rudimentary, it appears that problematic opioid use arises in some fraction of opioid-treated chronic pain patients, and that problematic behaviors and addiction are problems that need to be addressed. Since the potentially devastating effects of addiction can substantially offset the benefits of opioid pain relief, it seems timely to reexamine addiction mechanisms and their relevance to the practice of long-term opioid treatment for pain. This article reviews the neurobiological and genetic basis of addiction, its terminology and diagnosis, the evidence on addiction rates during opioid treatment of chronic pain and the implications of biological mechanisms in formulating rational opioid treatment regimes.
2007
Ballantyne JC; LaForge KS
Pain
2007
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1016/j.pain.2007.03.028" target="_blank" rel="noreferrer">10.1016/j.pain.2007.03.028</a>
Psycho-educational interventions for children with chronic disease, parents and siblings: an overview of the research evidence base
Child; Humans; Great Britain; Adult; Parents; Siblings; Patient Education as Topic; adolescent; Adaptation; Psychological; Adolescent Transitions; Chronic disease; Intervention; Interventions; Evidence-Based Medicine/methods; Disabled Children/psychology
BACKGROUND: The role of psycho-educational interventions in facilitating adaptation to chronic disease has received growing recognition and is in keeping with policy developments advocating greater involvement of patients in their own care. The purpose of this paper is to provide an overview of the current literature regarding the effectiveness of psycho-educational interventions for children and adolescents with chronic disease, their parents and siblings. METHODS: Electronic searches were conducted using AMED, CINAHL, Cochrane Database, DARE, HTA, MEDLINE, NHS EED, PsycLIT, PsycINFO, and PubMED. Inclusion criteria were systematic reviews, meta-analyses and overviews based on traditional reviews of published literature. The titles of papers were reviewed, abstracts were obtained and reviewed, and full copies of selected papers were obtained. RESULTS: No reviews of psycho-educational interventions were found for either parents or siblings. Twelve reviews of interventions for children and adolescents were identified: chronic disease in general (three); chronic pain (one); asthma (three); chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (ME) (one); diabetes (two); juvenile idiopathic arthritis (JIA) (one) and one informational intervention for paediatric cancer patients. The main focus was on disease management (particularly in asthma and diabetes) with less attention being paid to psychosocial aspects of life with a chronic condition. Overall, there is evidence of effectiveness for interventions incorporating cognitive-behavioural techniques on variables such as self-efficacy, self-management of disease, family functioning, psychosocial well-being, reduced isolation, social competence, knowledge, hope, pain (for chronic headache), lung function (asthma), days absent from school (asthma), visits to A & E (asthma), fatigue (CFS), and metabolic control (diabetes). A number of gaps and limitations were identified across all disease categories, such as inadequate description of interventions, small sample sizes, and lack of evidence regarding cost-effectiveness. CONCLUSION: This overview has highlighted the need to extend the evidence base for psycho-educational interventions, particularly in a UK context. It is essential that effective interventions are implemented and embedded in service provision in order to maximize empowerment through self-care for children, adolescents and their parents.
2004
Barlow JH; Ellard DR
Child: Care, Health And Development
2004
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Journal Article
<a href="http://doi.org/10.1111/j.1365-2214.2004.00474.x" target="_blank" rel="noreferrer">10.1111/j.1365-2214.2004.00474.x</a>
Children's perspectives on the benefits and burdens of research participation
BACKGROUND: Participation in research is associated with benefits and burdens for individual research participants. Children living with a chronic illness are considered particularly vulnerable as they are already burdened with symptoms of their illness. In particular contexts, such as learning health care systems (LHS), where research and clinical care are integrated, children with chronic illnesses may be asked to participate in research related to their illness. A growing body of literature has focused on children's perspectives as research subjects; however, a relatively understudied aspect concerns children's experiences of research in clinics where they are also patients. METHODS: We interviewed 25 Canadian children and adolescents living with inflammatory bowel disease (IBD) about their experiences of research participation. RESULTS: Our participants described aspects of the research process and particular experiences as benefits and others as burdens. Benefits included helping others, receiving incentives, receiving the results of previous studies, and participating in fun activities. Burdens included the time required for particular types of research, physical and psychological discomfort, and feelings of obligation. CONCLUSIONS: Our study describes the experiences of children participating in research at a site that integrates research and clinical care. Our participants described experiences that often go unreported (such as feelings of obligation); we mention these as important considerations to be mindful of when interacting with children as (potential) research participants in an LHS and when thinking about research ethics protocols or the assent/consent process.
Barned C; Dobson J; Stintzi A; Mack D; O'Doherty KC
AJOB Empirical Bioethics
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1080/23294515.2018.1430709" target="_blank" rel="noreferrer noopener">10.1080/23294515.2018.1430709</a>
Scholarly Literature Review: Efficacy of Psychological Interventions for Pediatric Chronic Illnesses
PedPal Lit; Chronic disease; Intervention; Interventions; Chronic Illness; Effect Size; Pediatric Illness; Validity
Objective To review empirical studies of the efficacy of psychological interventions as adjuvanttherapies for children with pediatric diabetes, cancer, cystic fibrosis, and sickle celldisease. Methods A search was conducted for qualifying studies published since 1980. Onlystudies meeting basic criteria for external and internal validity were included. Nineteen studieswere identified, providing data on 62 outcome variables. Effect sizes (ESs) were analyzed by illnesstype, intervention type, and strength of internal and external validity of the researchdesign. Results Overall, interventions were associated with large ESs, which were notsignificantly moderated by illness type or intervention type. However, larger ESs were associatedwith lower scores on validity of research design. Conclusions Adjuvant psychologicalinterventions for pediatric chronic illnesses appear in general to be efficacious, associated with alarge mean ES across a range of outcome variables. However, until more studies have beencompleted using stronger research designs, only tentative conclusions can be drawn.
2006
Beale IL
Journal of Pediatric Psychology
2006
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1093/jpepsy/jsj079" target="_blank" rel="noreferrer">10.1093/jpepsy/jsj079</a>
Pain, anxiety, distress, and suffering: interrelated, but not interchangeable
Child; Humans; Age Factors; Severity of Illness Index; Acute Disease; Stress; Chronic disease; Analgesics/administration & dosage/therapeutic use; Anxiety/drug therapy/etiology/psychology; Catheterization; Central Venous/adverse effects/psychology; Neoplasms/complications/drug therapy/psychology; Pain/complications/drug therapy/psychology; Psychological/drug therapy/etiology/psychology
2003
Berde C; Wolfe J
The Journal Of Pediatrics
2003
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1067/mpd.2003.194" target="_blank" rel="noreferrer">10.1067/mpd.2003.194</a>
Analgesics for the treatment of pain in children
Child; Humans; infant; Analgesics; Analgesia; Anesthetics; Non-U.S. Gov't; P.H.S.; Research Support; U.S. Gov't; infant; Chronic disease; Newborn; Pain/drug therapy/etiology; Anesthesia; Anti-Inflammatory Agents; Neoplasms/complications; Patient-Controlled; Analgesics/administration & dosage/therapeutic use; General; Acetaminophen/therapeutic use; Aspirin/therapeutic use; Local; Non-Steroidal/therapeutic use; Opioid/pharmacokinetics/pharmacology/therapeutic use
2002
Berde CB; Sethna NF
The New England Journal Of Medicine
2002
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1056/NEJMra012626" target="_blank" rel="noreferrer">10.1056/NEJMra012626</a>
Pediatric palliative care-when quality of life becomes the main focus of treatment
Palliative Care; Pediatrics/og [Organization & Administration]; Quality of Life; bereavement; Chronic disease; Communication; decision making; Family Health; Humans; Palliative Care/og [Organization & Administration]; Patient-Centered Care; Spiritual therapies
Pediatric palliative care (PPC) focuses on children and adolescents with life-limiting diseases. It may be initiated at various points of the disease trajectory, if possible early enough to support living with the best possible quality of life despite a limited lifespan. From birth to adolescence, children with a broad spectrum of diseases may benefit from PPC. Since 50% of deaths in childhood occur within the first year of life, PPC is just as relevant to neonatology. Causes of death in the neonate and young infant are due to perinatal conditions such as preterm birth and congenital disorders and syndromes; in older children, external causes, such as traumatic injuries, outweigh disease-related causes of death. PPC may last from a few hours or days for neonates to many years for children with complex chronic conditions. For neonates, PPC often has the character of end-of-life (EOL) care followed by bereavement care for the family. For older children, PPC can clearly be differentiated from EOL care; its indications include progress or deterioration of disease, marked instability of the child's condition, increase in the need for technical or medical support, increase in suffering, or failure of treatment. If a child's need for palliative care is established, useless and potentially harmful treatments may be withheld and informed choices can be made about treatment, care, and the remaining life of the child. Conclusion This review aims to provide knowledge for clinicians who care for children and adolescents at risk of dying from their disease. PPC can improve the child's remaining lifetime by focusing on quality of life and goals that are defined by the child and his or her family.
Bergstraesser E
European Journal Of Pediatrics
2013
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<a href="http://doi.org/10.1007/s00431-012-1710-z" target="_blank" rel="noreferrer">10.1007/s00431-012-1710-z</a>
Palliative care referral criteria and application in pediatric illness care: A scoping review
Palliative Care; palliative care; Pediatrics; chronic disease; Referral and Consultation; systematic review; palliative medicine; referral and consultation
BACKGROUND: Specialty pediatric palliative care services can help to address unmet care needs for children with complex and serious illness. Current guidelines support the identification of unmet palliative care needs; however, it is unknown how these guidelines or other clinical characteristics influence pediatric palliative care referral in research and practice. AIM: To evaluate the identification and application of palliative care referral criteria in pediatric illness care and research. DESIGN: A scoping review with a content analysis approach to summarize results. DATA SOURCES: Five electronic databases (PubMed, CINAHL, PsycINFO, SCOPUS, and Academic Search Premier) were used to identify peer-reviewed literature published in English between January 2010 and September 2021. RESULTS: We included 37 articles focused on the referral of pediatric patients to palliative care teams. The identified categories of referral criteria were: disease-related; symptom-related; treatment communication; psychosocial, emotional, and spiritual support; acute care needs; end-of-life care needs; care management needs; and self-referrals for pediatric palliative care services. We identified two validated instruments to facilitate palliative care referral and seven articles which described population-specific interventions to improve palliative care access. Nineteen articles implemented a retrospective health record review approach that consistently identified palliative care needs with varying rates of service use. CONCLUSIONS: The literature demonstrates inconsistent methods for identifying and referring children and adolescents with unmet palliative care needs. Prospective cohort studies and clinical trials would inform more consistent pediatric palliative care referral practices. More research is needed on palliative care referral and outcomes in community-focused pediatrics.
Bernier Carney KM; Goodrich G; Lao A; Tan Z; Kiza AH; Cong X; Hinderer KA
Palliative Medicine
2023
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<a href="https://journals.sagepub.com/doi/10.1177/02692163231163258">10.1177/02692163231163258</a>
"I Could Never Prepare for Something Like the Death of My Own Child": Parental Perspectives on Preparedness at End of Life for Children With Complex Chronic Conditions
beareavement; children; chronic disease; disability; end of life; palliative care
Context: Children with complex chronic conditions (CCCs) have high morbidity and mortality. While these children often receive palliative care services, little is known about parental preparedness for their child's end of life (EOL). Objective(s): This study aimed to elucidate aspects important to preparedness at EOL among bereaved parents of children with CCCs. Method(s): In this cross-sectional study, parents of children who received care at Boston Children's Hospital and died between 2006 and 2015 completed 21 open-response items querying communication, decision-making, and EOL experiences as part of the Survey of Caring for Children with CCCs. Additional demographic data were extracted from the child's medical record. An iterative multistage thematic analysis of responses was utilized to identify key contexts, conditions, and themes pertaining to preparedness. Result(s): One hundred ten of 114 parents responded to open-ended items; 63% (n = 69) had children with congenital or central nervous system progressive primary conditions for a median of 7.5 years (IQR 0.8-18.1) before death. Seventy-one percent (n = 78/110) had palliative care involvement and 65% (n = 69/106) completed advance care planning. Parents described preparedness as a complex concept that extended beyond "readiness" for their child's death. Three domains emerged that contributed to parents' lack of preparedness: 1) chronic illness experiences; 2) pretense of preparedness; and 3) circumstances and emotions surrounding their child's death. Conclusion(s): Most bereaved parents of children with CCCs described feeling unprepared for their child's EOL, despite palliative care and advance care planning, suggesting preparedness is a nuanced concept beyond "readiness." More research is needed to identify supportive elements among parents facing their child's EOL. Copyright © 2020 American Academy of Hospice and Palliative Medicine
Bogetz J F; Revette A; Rosenberg A R; DeCourcey D
Journal of Pain and Symptom Management
2020
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<a href="http://doi.org/10.1016/j.jpainsymman.2020.06.035" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2020.06.035</a>
Pediatric Hospital Care for Children with Life-threatening Illness and the Role of Palliative Care
Hospitalization; Chronic disease; Health care reform; Life Threatening illness; Hospital care
Under increasing pressure to contain costs, hospitals are challenged to provide high-quality care to an increasingly complex group of children with life-threatening illness (LTI) that often worsen over time. Pediatric palliative care is an essential component of optimal hospital care delivery for these children and their families. This article describes (1) the current landscape of pediatric hospital care for children with LTI, (2) the connection between palliative care and hospital care for such children, and (3) the relationship between health care reform and palliative care for children with LTI.
2014-08
Bogetz JF; Ullrich CK; Berry JG
Pediatric Clinics Of North America
2014
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Journal Article
<a href="http://doi.org/10.1016/j.pcl.2014.05.002" target="_blank" rel="noreferrer">10.1016/j.pcl.2014.05.002</a>
Association between opioid prescribing patterns and opioid overdose-related deaths
Female; Humans; Male; Young Adult; Cohort Studies; Adult; Analgesics; Aged; Middle Aged; Risk; Acute Disease; Case-Control Studies; adolescent; Physician's Practice Patterns/statistics & numerical data; Chronic disease; United States/epidemiology; Drug Prescriptions/statistics & numerical data; Opioid/administration & dosage/poisoning; Overdose/epidemiology; Pain/drug therapy; Veterans/statistics & numerical data
CONTEXT: The rate of prescription opioid-related overdose death increased substantially in the United States over the past decade. Patterns of opioid prescribing may be related to risk of overdose mortality. OBJECTIVE: To examine the association of maximum prescribed daily opioid dose and dosing schedule ("as needed," regularly scheduled, or both) with risk of opioid overdose death among patients with cancer, chronic pain, acute pain, and substance use disorders. DESIGN: Case-cohort study. SETTING: Veterans Health Administration (VHA), 2004 through 2008. PARTICIPANTS: All unintentional prescription opioid overdose decedents (n = 750) and a random sample of patients (n = 154,684) among those individuals who used medical services in 2004 or 2005 and received opioid therapy for pain. Main Outcome Measure Associations of opioid regimens (dose and schedule) with death by unintentional prescription opioid overdose in subgroups defined by clinical diagnoses, adjusting for age group, sex, race, ethnicity, and comorbid conditions. RESULTS: The frequency of fatal overdose over the study period among individuals treated with opioids was estimated to be 0.04%.The risk of overdose death was directly related to the maximum prescribed daily dose of opioid medication. The adjusted hazard ratios (HRs) associated with a maximum prescribed dose of 100 mg/d or more, compared with the dose category 1 mg/d to less than 20 mg/d, were as follows: among those with substance use disorders, adjusted HR = 4.54 (95% confidence interval [CI], 2.46-8.37; absolute risk difference approximation [ARDA] = 0.14%); among those with chronic pain, adjusted HR = 7.18 (95% CI, 4.85-10.65; ARDA = 0.25%); among those with acute pain, adjusted HR = 6.64 (95% CI, 3.31-13.31; ARDA = 0.23%); and among those with cancer, adjusted HR = 11.99 (95% CI, 4.42-32.56; ARDA = 0.45%). Receiving both as-needed and regularly scheduled doses was not associated with overdose risk after adjustment. CONCLUSION: Among patients receiving opioid prescriptions for pain, higher opioid doses were associated with increased risk of opioid overdose death.
Bohnert AS; Valenstein M; Bair MJ; Ganoczy D; McCarthy JF; Ilgen MA; Blow FC
Jama
2011
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Journal Article
<a href="http://doi.org/10.1001/jama.2011.370" target="_blank" rel="noreferrer">10.1001/jama.2011.370</a>
Enabling the transition to hospice through effective palliative care
Humans; Prognosis; Needs Assessment; Organizational Objectives; quality of life; Models; Chronic disease; Life Expectancy; Attitude to Death/ethnology; Case Management/organization & administration; Continuity of Patient Care/organization & Disease Progression; Hospice Care/organization & administration/psychology; Organizational; Palliative Care/organization & Professional Role; Referral and Consultation/organization & United States
The end of life has changed dramatically in recent years as life expectancies have increased, chronic disease rates have risen, and families, health care systems, and society have changed. As technology has advanced, death too often has become viewed by society as "failure" and even "optional." Too often, referral to hospice has come too late to be sufficiently effective. While expertise in palliation of pain and symptoms at the end of life has been developed, palliative care has not been well integrated with management of chronic diseases or incorporated into the continuum of medical management from health and wellness to the end of life. We can, and must, do better.
2005
Bomba PA
The Case Manager
2005
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Journal Article
<a href="http://doi.org/10.1016/j.casemgr.2004.11.005" target="_blank" rel="noreferrer">10.1016/j.casemgr.2004.11.005</a>
Life-Limiting Conditions at a University Pediatric Tertiary Care Center: A Cross-Sectional Study
Chronic disease; end-of-life care; Hospitals; Life-limiting conditions; Palliative Care; Pediatrics
BACKGROUND: The increasing number of children with life-threatening and life-limiting conditions requires an individualized approach and additional supportive care in hospitals. However, these patients' characteristics and their prevalence in a pediatric tertiary hospital setting have not been systematically analyzed. OBJECTIVE: This study aimed to determine the proportion of hospitalized children who are receiving care for life-threatening diseases with feasible curative treatments and for life-limiting diseases (LLDs) with inevitable premature death as opposed to care for acute or chronic diseases; additionally, it sought to compare patient characteristics, clinical features, and symptoms within these subgroups. DESIGN/SETTING/SUBJECTS: A cross-sectional survey of 208 patients was conducted at a large tertiary pediatric care center through standardized interviews with the responsible medical teams. Patient subgroups were defined as those with acute, chronic, life-threatening, or LLDs. RESULTS: The comparisons of patient subgroups showed distinct differences and revealed that nearly half of all inpatients suffer from life-threatening (20%) or LLDs (27%), with a high proportion of rare diseases (82%). They experienced a high burden of symptoms in all parameters of clinical features, including high demand for medications and nursing care. CONCLUSION: A substantial proportion of pediatric inpatients suffered from life-threatening or LLDs, as well as rare diseases, indicating a high burden of symptoms and a high need for additional care. The results suggest a substantial need to implement pediatric palliative care structures in tertiary care centers for patients in critical and terminal conditions.
Bosch A; Wager J; Zernikow B; Thalemann R; Frenzel H; Krude H; Reindl T
Journal Of Palliative Medicine
2018
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<a href="http://doi.org/10.1089/jpm.2017.0020" target="_blank" rel="noreferrer">10.1089/jpm.2017.0020</a>
Low prevalence of palliative care and ethics consultations for children with chronic critical illness
childhood disease th [Therapy];Chronic disease;critical illness;Ethics;Palliative therapy;article;artificial ventilation;consultation;hospital admission;Human;intensive care unit;Length of Stay;prevalence;priority journal;tracheostomy
Medical advances over the past two decades have increased the numbers of children who survive serious conditions. Mortality from premature birth and genetic syndromes has improved such that more clinicians offer, and more families request, interventions to prolong their child's life. While some interventions promise cure, others result in chronic disease states that require ongoing medical care.
Paediatric intensive care units (ICUs) across the United States (U.S.) report increasing numbers of children with prolonged and recurrent hospitalisations and medical complexity 1. We have suggested that this population be considered ‘chronically critically ill (CCI)’ 2. The CCI designation for adult ICU patients signals to families and clinicians alike that the patient's prognosis is poorer than predicted by their primary diagnosis alone.
Boss RD;Falck A;Goloff N;Hutton N;Miles A;Shapiro M;Weiss EM;Donohue PK
Acta Paediatrica, International Journal of Paediatrics
2018
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<a href="http://doi.org/10.1111/apa.14394" target="_blank" rel="noreferrer noopener">10.1111/apa.14394</a>
Complex palliative care and transition: a case review
Child; Humans; Male; Palliative Care; Adult; Continuity of Patient Care; adolescent; Chronic disease
This case study assesses the effect that health and social care had on the chronic life-limiting condition of a young man going through transition from children's to adult services. He was taken into foster care at 16 years old and placed with his maternal uncle and aunt. Relevant literature is introduced to consider the impact that placement had on the foster family and the young person as he was transitioned over a two-year period to adult services, not only in terms of their adaptations, but also on his health and prognosis. Close liaison between social services and hospital and community teams meant that medical and social outcomes were markedly improved for this young man.
2007
Bowen M
Paediatric Nursing
2007
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Journal Article
<a href="http://doi.org/10.7748/paed2007.11.19.9.42.c6286" target="_blank" rel="noreferrer">10.7748/paed2007.11.19.9.42.c6286</a>
Melatonin treatment in individuals with intellectual disability and chronic insomnia: a randomized placebo-controlled study
Child; Female; Humans; Male; Adult; Aged; Middle Aged; Treatment Outcome; Comorbidity; Time Factors; Double-Blind Method; adolescent; Preschool; Q3 Literature Search; Chronic disease; Saliva; Central Nervous System Depressants/adverse effects/therapeutic use; Melatonin/adverse effects/therapeutic use; Mental Retardation/epidemiology/psychology; Sleep Initiation and Maintenance Disorders/drug therapy/epidemiology/psychology
BACKGROUND: While several small-number or open-label studies suggest that melatonin improves sleep in individuals with intellectual disabilities (ID) with chronic sleep disturbance, a larger randomized control trial is necessary to validate these promising results. METHODS: The effectiveness of melatonin for the treatment of chronic sleep disturbance was assessed in a randomized double-blind placebo-controlled trial with 51 individuals with ID. All of these individuals presented with chronic ideopatic sleep disturbance for more than 1 year. The study consisted of a 1-week baseline, followed by 4 weeks of treatment. Parents or other caregivers recorded lights off time, sleep onset time, night waking, wake up time and epileptic seizures. Endogenous melatonin cycle was measured in saliva before and after treatment. RESULTS: Compared with placebo, melatonin significantly advanced mean sleep onset time by 34 min, decreased mean sleep latency by 29 min, increased mean total sleep time by 48 min, reduced the mean number of times the person awoke during the night by 0.4, decreased the mean duration of these night waking periods by 17 min and advanced endogenous melatonin onset at night by an average of 2.01 h. Lights off time, sleep offset time and the number of nights per week with night waking did not change. Only few minor or temporary adverse reactions and no changes in seizure frequency were reported. CONCLUSIONS: Melatonin treatment improves some aspects of chronic sleep disturbance in individuals with ID.
2008
Braam W; Didden R; Smits M; Curfs L
Journal Of Intellectual Disability Research
2008
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Journal Article
<a href="http://doi.org/10.1111/j.1365-2788.2007.01016.x" target="_blank" rel="noreferrer">10.1111/j.1365-2788.2007.01016.x</a>
Pain management: a fundamental human right
Humans; Analgesics; Chronic disease; Opioid/therapeutic use; Human Rights/legislation & jurisprudence; Pain/epidemiology/therapy; Drug and Narcotic Control/legislation & jurisprudence; World Health Organization
This article surveys worldwide medical, ethical, and legal trends and initiatives related to the concept of pain management as a human right. This concept recently gained momentum with the 2004 European Federation of International Association for the Study of Pain (IASP) Chapters-, International Association for the Study of Pain- and World Health Organization-sponsored "Global Day Against Pain," where it was adopted as a central theme. We survey the scope of the problem of unrelieved pain in three areas, acute pain, chronic noncancer pain, and cancer pain, and outline the adverse physical and psychological effects and social and economic costs of untreated pain. Reasons for deficiencies in pain management include cultural, societal, religious, and political attitudes, including acceptance of torture. The biomedical model of disease, focused on pathophysiology rather than quality of life, reinforces entrenched attitudes that marginalize pain management as a priority. Strategies currently applied for improvement include framing pain management as an ethical issue; promoting pain management as a legal right, providing constitutional guarantees and statutory regulations that span negligence law, criminal law, and elder abuse; defining pain management as a fundamental human right, categorizing failure to provide pain management as professional misconduct, and issuing guidelines and standards of practice by professional bodies. The role of the World Health Organization is discussed, particularly with respect to opioid availability for pain management. We conclude that, because pain management is the subject of many initiatives within the disciplines of medicine, ethics and law, we are at an "inflection point" in which unreasonable failure to treat pain is viewed worldwide as poor medicine, unethical practice, and an abrogation of a fundamental human right.
2007
Brennan F; Carr DB; Cousins M
Anesthesia & Analgesia
2007
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Journal Article
<a href="http://doi.org/10.1213/01.ane.0000268145.52345.55" target="_blank" rel="noreferrer">10.1213/01.ane.0000268145.52345.55</a>
"I Didn't Want My Baby to Pass, But I Didn't Want Him Suffering Either": Comparing Bereaved Parents' Narratives With Nursing End-of-Life Assessments in the Pediatric Intensive Care Unit
child; terminal care; nursing; chronic disease; male; pain; human; intensive care; pediatric intensive care unit; perception; narrative; article; controlled study; interview; major clinical study; distress syndrome; comfort; cancer patient; quantitative analysis; malignant neoplasm; infant; sedation; memory
Little is known about how nursing care at the end of a child's life impacts long-term parental bereavement. We aimed to explain, contextualize, and examine comparisons between quantitative trends in children's end-of-life care and parents' qualitative perceptions. We used a mixed methods design, combining quantitative data from the RESTORE clinical trial with qualitative interviews with bereaved parents. Patients who died during RESTORE were included in quantitative analyses. A subset of their parents was interviewed 7 to 11 years later. The quantitative analyses included 104 children. Eight parents were interviewed; 4 had a child die after cancer, and 4 had a child die after a complex chronic illness. Quantitatively, patients' pain and sedation scores were generally comfortable. Children died with multiple invasive devices in place. Parents' descriptions of their child's comfort and critical care requirements differed by illness trajectory (cancer, complex chronic illness). Parents' memories of their child's suffering aligned with peaks in clinical scores, rather than averages. Invasive devices and equipment altered parents' ability to make meaningful final memories with the dying child. Pediatric intensive care clinicians may need to broaden how they attend to dying children's pain and corresponding parental distress, as parents' memories of their dying child's suffering persist for years. Copyright © 2022 by The Hospice and Palliative Nurses Association. All rights reserved.
Broden EG; Hinds PS; Werner-Lin AV; Curley MAQ
Journal of hospice and palliative nursing
2022
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<a href="http://doi.org/10.1097/NJH.0000000000000884" target="_blank" rel="noreferrer noopener">10.1097/NJH.0000000000000884</a>
Treatment of pediatric chronic pain with tramadol hydrochloride: siblings with Ehlers-Danlos syndrome - Hypermobility type
Child; Humans; Male; Analgesics; Preschool; Chronic disease; Pain/drug therapy/etiology; Opioid/administration & dosage; Ehlers-Danlos Syndrome/complications; Joint Instability/etiology; Tramadol/administration & dosage
OBJECTIVE: To evaluate the effectiveness of tramadol hydrochloride for the treatment of chronic pain refractory to previous treatment in two pediatric patients. METHODS: Tramadol hydrochloride was administered (50 mg/day to 150 mg/day) to two siblings with Ehlers-Danlos syndrome - Hypermobility type refractory to previous pharmacological treatments, and changes in pain intensity and physical activity were assessed. RESULTS: Pain intensity decreased and physical activity improved within days of starting therapy. Positive results have been maintained for 30 months. CONCLUSIONS: Tramadol hydrochloride was a safe and effective treatment for relieving chronic pain in two pediatric patients suffering from the hypermobility type of Ehlers-Danlos syndrome. No morbidity or side effects were noted during the 30-month follow-up.
2004
Brown SC; Stinson J
Pain Research & Management
2004
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Journal Article
<a href="http://doi.org/10.1155/2004/370915" target="_blank" rel="noreferrer">10.1155/2004/370915</a>
Children with disabilities and chronic conditions and longer-term parental health
Parents; Chronic disease; Child Disability; Chronic Condition; Disabilities; Disability; Gender Roles; identity; NET Grey Lit; Parental Health
This paper uses panel data from the Statistics Canada National Longitudinal Survey of Children and Youth (1994 through 2000) to study the implications of parenting a child with a disability or chronic condition for subjective assessments of parental health. We find mother's health to be negatively affected, particularly if the disability is longer-term. Within families, the wife's health deteriorates relative to her husband's when they are parenting a child with a disability. These results are consistent with Akerlof and Kranton's (2000) arguments that 'identity' is an important determinant of both behaviour and well-being. For parents of children with disabilities, the behaviour associated with a traditional 'good mother' identity (e.g., care-giving) appears to have more adverse health consequences than the behaviour associated with a 'good father' identity (e.g., bread-winning).
2006
Burton P; Lethbridge L; Phipps S
2006
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Journal Article
<a href="http://doi.org/10.1016/j.socec.2007.01.032" target="_blank" rel="noreferrer">10.1016/j.socec.2007.01.032</a>
Assessing the impact of pediatric epilepsy and concomitant behavioral, cognitive, and physical/neurologic disability: Impact of Childhood Neurologic Disability Scale
Child; Female; Humans; Male; Questionnaires; Follow-Up Studies; Longitudinal Studies; Reproducibility of Results; Disability Evaluation; Diagnostic and Statistical Manual of Mental Disorders; adolescent; Preschool; Chronic disease; Child Behavior Disorders/diagnosis/etiology; Cognition Disorders/diagnosis/etiology; Epilepsy/complications/diagnosis
Epilepsy has a significant impact on a child's life, the extent to which is based on four factors: epilepsy, cognition, behavioral, and physical/neurologic function. This study evaluates the ability of the 44-item Impact of Childhood Neurologic Disability Scale (ICND) to assess each of these four realms. Parents of children (aged 2 to 18 years) with epilepsy rated their child's overall quality of life and completed the ICND. External validation compared the ICND with (1) neurologists' reports of children's behavior, cognitive abilities, physical/neurologic disability, and epilepsy; and (2) parents, teachers, and children's ratings on six 'criterion standard' questionnaires. Families of 68 children with epilepsy only and 29 children with 'epilepsy-plus' (additional cognitive, behavioral, or physical/neurologic disability; 39 males, 58 females; mean age at testing 10 years 3 months [SD 4.5] age range 2 to 17 years) participated. Internal consistency was excellent (Cronbach's alpha=0.92) as was test-retest reliability (intraclass correlation=0.89). Caregivers distinguished the impact of each of the four realms. Scores were negatively related to quality of life (Pearson's r=-0.59). Children with high ICND scores had more difficulties at home and school. Their parents saw them as less rewarding and adaptable and the children saw themselves as less intelligent and less popular with more emotional problems. In addition, children with 'epilepsy-plus' had significantly higher total ICND scores as well as markedly elevated scores within each of the four realms when compared with the epilepsy-only group. It is concluded that the ICND is an accurate, quick measurement tool reflecting the impact of behavior, cognitive learning ability, physical/neurologic disability, and epilepsy on children and their families.
2003
Camfield C; Breau L; Camfield P
Developmental Medicine And Child Neurology
2003
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Journal Article
<a href="http://doi.org/10.1017/s0012162203000306" target="_blank" rel="noreferrer">10.1017/s0012162203000306</a>
How Do Children With Medical Complexity Die? A Scoping Review
Child; child; cohort analysis; human; chronic disease; quality of life; North America; systematic review; review; health care utilization; personal experience; Only Child; clinical practice; child death; qualitative research; knowledge gap; place of death; chronic patient; biological marker
Introduction: Advancement in medical expertise and technology has led to a growing cohort of children with medical complexity (CMC), who make up a rising proportion of childhood deaths. However, end of life in CMC is poorly understood and little is known about illness trajectories, communication, and decision-making experiences. Objective: To synthesize existing literature and characterize the end-of-life experience in CMC. Methods: A literature search of MEDLINE, CINAHL, PsycINFO, Scopus, Embase, and Google Scholar was conducted up to August 26, 2021. Studies reporting CMC at end of life were included and the extracted data were analyzed descriptively. Findings: Of 1535 publications identified, 23 studies were included. Most studies (15/23 [65%]) were published from 2015 to 2021 and were quantitative in nature (20/23 [87%]). The majority of studies that extracted data from a single country (18/20 [90%]) originated from North America. Study outcomes were categorized into four main domains: (1) place of death (2) health care use (3) interventions received or withdrawn (4) communication, and end-of-life experiences. The weighted percentage of in-hospital CMC deaths was 80.6%. Studies reported that CMC had increased health care use and were subjected to more intensive interventions at end of life compared with non-CMC. Qualitative studies highlighted the following themes: Intrinsic prognostic uncertainty, differing perspectives of the child's quality of life, the chronic illness experience, a desire to have parental expertise acknowledged, surprise at the terminal event, the experience of multiple losses, with an overarching theme of the need for compassionate care at end of life. Conclusions: This scoping review highlighted important characteristics of end of life in CMC, outlining the emerging evidence and knowledge gaps on this topic. A better understanding of this cohort of seriously and chronically ill children would serve to inform clinical practice, service development, and future research.
Chan Ng GM; Bourassa MH; Patel H
Journal of Palliative Medicine
2024
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1089/jpm.2023.0322" target="_blank" rel="noreferrer noopener">10.1089/jpm.2023.0322</a>
What we still don't know about treating chronic noncancer pain with opioids
Humans; Practice Guidelines as Topic; Analgesics; Chronic disease; Pain/drug therapy; Opioid/therapeutic use
2010
Chou R
Canadian Medical Association Journal
2010
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1503/cmaj.100548" target="_blank" rel="noreferrer">10.1503/cmaj.100548</a>
Enhancing the care of children with chronic diseases through the narratives of patient, physician, nurse and carer
children; chronic disease; qualitative research; bio-psycho-social model; Narrative medicine
We tested the hypothesis that a narrative approach may enhance a bio-psycho-social model (BPS) in caring for chronically ill children. Forty-eight narratives were collected from 12 children with six different medical conditions, their mothers, physicians, and nurses. By a textual analysis, narratives were classified on their predominant focus as disease (biological focus), illness (psychologic focus), or sickness (social focus). Sixty-one percent of narrative' text were classified as illness, 28% as disease and 11% as sickness. All narratives had a degree of illness focus. Narratives by patients and physicians on the one hand, and nurses' and mothers' on the other were disease focused. Narratives were also evaluated with respect to the type of medical condition: Illness was largely prevalent in all but Crohn's disease and HIV infection, the latter having a predominance of sickness most probably related to stigma. Narrative exploration proved a valuable tool for understanding and addressing the needs of children with complex conditions. Narrative approaches allow identification of the major needs of different patients according to health conditions and story tellers. In the narratives, we found a greater illness and disease focus and surprisingly a low sickness focus, except with HIV stories. Narrative medicine provides a tool to strengthen the BPS model in health care.
Continisio GI; Nunziata F; Coppola C; Bruzzese D; Spagnuolo MI; Guarino A
Scandinavian Journal of Psychology
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1111/sjop.12690" target="_blank" rel="noreferrer noopener">10.1111/sjop.12690</a>
Silhouette of pain
Child; Female; Humans; Pregnancy; Pregnancy Complications; Adult; Family Health; PedPal Lit; Chronic disease; Infectious; poverty; Child welfare; Relief Work; Vulnerable Populations; Benzocaine; Chickenpox/complications; Hepatitis/complications; Mississippi
2006
Cora-Bramble D
Academic Medicine
2006
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Journal Article
Unending work and care: managing chronic illness at home
Family Relations; Psychology; Chronic disease; home care services
Corbin JM; Strauss A
1988
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Book/Book Section
Financial effects for families after the death of a disabled or chronically ill child: a neglected dimension of bereavement
Child; Humans; Family; Income; bereavement; Chronic disease; Parent caregivers; disabled children; Employment
AIM: To investigate the financial circumstances of families whose child had died after a long-term illness and the factors contributing to financial difficulties. RESEARCH METHODS: Qualitative exploration involved semi-structured interviews with a purposive sample of 16 families whose child had died in the last 2 years and who were in touch with a children's hospice. RESULTS: All parents were affected by loss of or reduction in social security benefits. This could result in an immediate drop in income of as much as 72%. Paying for funerals and headstones could be hard. Financial problems after the child's death often had origins in the period of care, when parents had reduced incomes but faced extra costs of care. Some families had got into debt. Re-engaging with employment could be a slow process, and it was not clear where professional responsibility lay in providing financial advice and support. Insensitive treatment by administrative agencies increased problems for parents. DISCUSSION: Findings provide further evidence of the financial impact for families of caring for severely disabled children. This study shows how this impact can extend far into the period after death. Findings indicate the need for financial advice and support to families both during the period of care and after bereavement.
2002
Corden A; Sloper P; Sainsbury R
Child: Care, Health And Development
2002
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Journal Article
<a href="http://doi.org/10.1046/j.1365-2214.2002.00267.x" target="_blank" rel="noreferrer">10.1046/j.1365-2214.2002.00267.x</a>
Moving on from paediatric to adult health care: an initial evaluation of a transition program for young people with cystic fibrosis
Cross-Sectional Studies; Female; Humans; Male; Adult; Questionnaires; Middle Aged; Age Factors; Program Development; Program Evaluation; Patient Satisfaction; Time Factors; Adolescent Health Services; Sickness Impact Profile; quality of life; adolescent; Adolescent Transitions; Chronic disease; Continuity of Patient Care/organization & administration; Cystic Fibrosis/psychology/therapy
BACKGROUND AND OBJECTIVE: Although there are general guidelines for adolescents with chronic illnesses making the transition from paediatric to adult health care, there are few studies which evaluate transition programs. This cross-sectional study was a preliminary evaluation of a transition program for young people with cystic fibrosis. Study group and methods: A self-administered questionnaire was completed by a group of 'pre-transition' adolescents and their parents who had not moved on to adult health care and a 'post-transition' group who had moved on from the Children's Hospital at Westmead over a six year period. The questionnaire examined patient and parent concerns about adult health care, participation in steps of the transition process, satisfaction with transition and health related quality of life. Measures of disease severity (lung function tests and body mass index) were also included. RESULTS: 137 out of 220 (62%) eligible participants completed the questionnaire. In the pre-transition group, parents had more concerns compared to young people. There was no evidence of a significant difference between pre-transition and post-transition young people regarding degree of concern. Most people were satisfied with the transition program and posttransition patients and parents who completed more steps in the transition program described the overall transition process more positively. There was no evidence of a relationship between amount of participation in transition and measures of disease severity or quality of life.
2007
Craig SL; Towns S; Bibby H
International Journal Of Adolescent Medicine And Health
2007
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Journal Article
<a href="http://doi.org/10.1515/ijamh.2007.19.3.333" target="_blank" rel="noreferrer">10.1515/ijamh.2007.19.3.333</a>