"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>
"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>
[Validation of the European Portuguese Version of a Pediatric Palliative Needs Assessment Tool: The Pediatric Palliative Screening Scale]
Translations; Adolescent; Child; Chronic Disease; Humans; Needs Assessment; Portugal; Psychometrics; Reproducibility of Results; Surveys and Questionnaires; Young Adult
INTRODUCTION: The Pediatric Palliative Screening Scale (PaPaS Scale) was designed to help professionals to identify life-limiting or life-threatening children/young people with complex chronic conditions who would benefit from pediatric palliative care and facilitate their timely and appropriate referral. The aim of this study was to translate, culturally adapt and validate the PaPaS Scale for the Portuguese pediatric population., MATERIAL AND METHODS: A quantitative methodological study involving translation, cultural adaptation and validation of a scale was performed. In the first phase, the translation and cultural adaptation of the original version of the PaPaS Scale from English to European Portuguese was undertaken. The second phase consisted of evaluating the psychometric properties of the Portuguese version of the PaPaS Scale., RESULTS: Fifty-one enquires pertaining to children/young adults with complex chronic conditions were completed and returned, the sum of the responses to the items on the scale revealed that 84.4% of the patients had an indication for referral to pediatric palliative care. The internal consistency analysis obtained a value of Cronbach's alpha above 0.80, so the scale was considered adequate for the analyzed data. In our sample, the item-total correlation values indicated that the 11 variables measured the PaPaS Scale with good reliability and unidimensionally. The confirmatory factor analysis suggested that the items were significant, consistent, and presented convergent validity globally. Only item "2.2. Treatment side effects" obtained a value below the defined threshold., CONCLUSION: The PaPaS Scale was translated and adapted to the European Portuguese version, allowing its immediate use in the Portuguese population. It will be essential to design multicentric studies to expand the knowledge about the psychometric characteristics of this scale.
Simoes MJP; Tavares F; Machado MdC
Acta Médica Portuguesa
2023
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<a href="http://doi.org/10.20344/amp.18071" target="_blank" rel="noreferrer noopener">10.20344/amp.18071</a>
A confident parent breeds a confident child': Understanding the experience and needs of parents whose children will transition from paediatric to adult care
chronic disease; focus groups; parents; transitional care
Transitional care for young people with long-term conditions emphasizes the importance of supporting parents, particularly in relation to promoting adolescent healthcare autonomy. Yet, little practical guidance is provided, and transitional care remains suboptimal for many families. This study aimed to examine how parents understand and experience their caregiving role during their child's transition to adult services, to identify parents' needs, and to inform service improvements. Focus groups were undertaken with parents of young people with brittle asthma, osteogenesis imperfecta, or epilepsy. Data were analysed using interpretative phenomenological analysis. Participants (n = 13) described how their parenting roles extended beyond what they consider usual in adolescence. These roles were presented as time consuming, stressful, and unrelenting but necessary to protect children from harm in the face of multiple risks and uncertainties. Such protective strategies were also perceived to hinder adolescent development, family functioning, and their own development as midlife adults. Finding a balance between protecting immediate health and long-term well-being was a major theme. Participants called for improved support, including improved service organization. Recommendations are provided for working with parents and young people to manage the risks and uncertainties associated with their condition, as part of routine transitional care. Copyright © The Author(s) 2020.
Shaw KL; Baldwin L; Heath G
Journal of Child Health Care.
2020
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<a href="http://doi.org/10.1177/1367493520936422" target="_blank" rel="noreferrer noopener">10.1177/1367493520936422</a>
A possible role for saliva as a diagnostic fluid in patients with chronic pain
Female; Humans; Male; Animals; Arthritis; Chronic disease; Biomarkers of Pain; Fibromyalgia/diagnosis/metabolism; Neuropeptides/diagnostic use/metabolism; Osteoarthritis/diagnosis/metabolism; Pain/diagnosis/metabolism; Rheumatoid/diagnosis/metabolism; Saliva; Salivary Proteins/diagnostic use/metabolism; Serotonin/diagnostic use/metabolism; Specimen Handling/methods/standards
OBJECTIVES: The focus of this review was on proteins and peptides found in saliva. Of greatest interest were those neuropeptides relevant to nociception and to the pathogenesis of chronic pain syndromes. An additional goal was to develop a standardized protocol to collect saliva for laboratory assessment. METHODS: Data were obtained through discussion with experts at the medical schools in San Antonio and Heidelberg and a Medline literature search involving all relevant studies from 1966 to 1997. The literature search was based on the following key terms: saliva, serotonin, neuropeptide, substance P (SP), calcitonin gene-related peptide (CGRP), and nerve growth factor (NGF). RESULTS: The mean concentration of SP in the saliva of healthy normal controls ranged from 9.6 to 220 pg/mL. Generally, the concentration of SP was approximately three times higher in saliva than in plasma. In a number of painful conditions, particularly tension headache, substantial elevations of salivary SP were found. Mean values for salivary CGRP in healthy controls were approximately 22 pmol/L and were significantly elevated in patients with migraine attacks or cluster headache. There were no data to indicate prior quantitative determination of NGF in human saliva. CONCLUSIONS: After sampling and processing techniques have been standardized, measurement of neuropeptides in human saliva could provide a valuable tool for study of patients with chronic painful disorders such as rheumatoid arthritis, osteoarthritis, and even fibromyalgia syndrome.
1998
Fischer HP; Eich W; Russell IJ
Seminars In Arthritis And Rheumatism
1998
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Journal Article
<a href="http://doi.org/10.1016/s0049-0172(98)80014-0" target="_blank" rel="noreferrer">10.1016/s0049-0172(98)80014-0</a>
A prospective investigation into the epidemiology of in-hospital pediatric cardiopulmonary resuscitation using the international Utstein reporting style
Child; Female; Humans; infant; Male; Survival Rate; Adult; Prospective Studies; Treatment Outcome; Hospitals; Emergency Service; adolescent; Preschool; infant; Chronic disease; Newborn; Pediatric/statistics & numerical data; Brazil/epidemiology; Cardiopulmonary Resuscitation/statistics & numerical data/utilization; Heart Arrest/mortality/therapy; Hospital/statistics & numerical data/utilization; Respiratory Insufficiency/mortality/therapy; Shock/mortality/therapy
OBJECTIVE: Data regarding pediatric in-hospital cardiopulmonary resuscitation (CPR) have been limited because of retrospective study designs, small sample sizes, and inconsistent definitions of cardiac arrest and CPR. The purpose of this study was to prospectively describe and evaluate pediatric in-hospital CPR with the international consensus-derived epidemiologic definitions from the Utstein guidelines. METHODS: All 129 in-hospital CPRs during 12 months at a 122-bed university children's hospital in Sao Paulo, Brazil, were described and evaluated using Utstein reporting guidelines. These guidelines include standardized descriptions of hospital variables, patient variables, arrest/event variables, and outcome variables. CPR was defined as chest compressions and assisted ventilation provided because of cardiac arrest or because of severe bradycardia with poor perfusion. Outcome variables included sustained return of spontaneous circulation, 24-hour survival, 30-day survival, 1-year survival, and neurologic status of survivors by the Pediatric Cerebral Performance Category Scale. RESULTS: Of the 6024 children admitted to the hospital, 176 (3%) had an episode that met the criteria for provision of CPR and 129 (2%) received CPR, 86 for clinical cardiac arrest and 43 for bradycardia with poor perfusion. Most of the children (71%) had preexisting chronic diseases. The most common precipitating causes were respiratory failure (61%) and shock (29%). The initial cardiac rhythm was asystole in 71 children (55%), pulseless electrical activity in 12 (9%), ventricular fibrillation in 1, and bradycardia with pulses and poor perfusion in 43 (33%). Eighty-three children (64%) attained sustained return of spontaneous circulation (>20 minutes), 43 (33%) were alive at 24 hours, 24 (19%) were alive at 30 days, and 19 (15%) were alive at 1 year. Although many factors correlated with 24-hour survival, multivariate logistic regression analysis revealed independent association of 24-hour survival with respiratory failure as the precipitating cause (odds ratio [OR]: 4.92; 95% confidence interval [CI]: 1.73-14.0), bradycardia with pulses as the initial event (OR: 2.68; 95% CI: 1.01-7.1), and shorter duration of CPR (OR: 0.92; 95% CI: 0.89-0.96 for each elapsed minute). Similarly, 30-day survival was independently associated with respiratory failure as the precipitating cause and shorter duration of CPR. Thirty-day survival decreased by 5% with each elapsed minute of CPR. Nineteen (91%) of the 21 survivors to hospital discharge and 16 (83%) of the 19 1-year survivors had no demonstrable long-term change in neurologic function from their pre-CPR status. CONCLUSIONS: During this study, CPR was uncommon but not rare. Respiratory failure was the most common precipitating cause, followed by shock. Preexisting chronic diseases were prevalent among these children. Asystole was the most common initial cardiac rhythm, and bradycardia with pulses and poor perfusion was the second most common. Ventricular fibrillation was rare, but children with acute cardiac diseases, such as cardiac surgery and acute cardiomyopathies, were not admitted to this children's hospital. CPR was effective: nearly two thirds of these children were initially successfully resuscitated, and one third were alive at 24 hours compared with imminent death without CPR and advanced life support. Nevertheless, survival progressively decreased over time, generally as a result of the underlying disease process. One-year survival was 15%. Importantly, most of these survivors had no demonstrable change in gross neurologic function from their pre-CPR status.
2002
Reis AG; Nadkarni V; Perondi MB; Grisi S; Berg RA
Pediatrics
2002
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Journal Article
<a href="http://doi.org/10.1542/peds.109.2.200" target="_blank" rel="noreferrer">10.1542/peds.109.2.200</a>
A review of the use of methadone for the treatment of chronic noncancer pain
Humans; Canada; Analgesics; Methadone; Non-U.S. Gov't; Research Support; Chronic disease; Pain/drug therapy; Drug; Legislation; Methadone/adverse effects/chemistry/pharmacokinetics/pharmacology/therapeutic use; Opioid/adverse effects/chemistry/pharmacokinetics/pharmacology/therapeutic use
Methadone, although having been available for approximately half a century, is now receiving increasing attention in the management of chronic pain. This is due to recent research showing that methadone exhibits at least three different mechanisms of action including potent opioid agonism, N-methyl-D-aspartate antagonism and monoaminergic effects. This, along with methadone's excellent oral and rectal absorption, high bioavailability, long duration of action and low cost, make it a very attractive option for the treatment of chronic pain. The disadvantages of significant interindividual variation in pharmacokinetics, graduated dose equivalency ratios based on prerotation opioid dose when switching from another opioid, and the requirement for special exemption for prescribing methadone make it more complicated to use. The present review is intended to educate physicians interested in adding methadone to their armamentarium for assisting patients with moderate to severe pain.
2005
Lynch ME
Pain Research & Management : The Journal Of The Canadian Pain Society = Journal De La Societe Canadienne Pour Le Traitement De La Douleur
2005
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Journal Article
<a href="http://doi.org/10.1155/2005/286713" target="_blank" rel="noreferrer">10.1155/2005/286713</a>
A Scale for the Identification of the Complex Chronic Pediatric Patient (PedCom Scale): A Pilot Study
Chronic disease; Disabled child; Multiple chronic conditions; Surveys and questionnaires
INTRODUCTION AND OBJECTIVES: The complex chronic condition (CCC) is an increasingly prevalent reality in pediatrics. However, having a CCC does not necessarily mean being a complex chronic patient (CCP). From this perspective, we developed an instrument (PedCom Scale) that would facilitate the identification of the CCP. MATERIAL AND METHODS: Initially, general aspects for the classification of patients as CCP were defined. Subsequently, the items of the scale were developed, scoring them from 0.5 to 4 points. We performed a confirmatory factor analysis (CFA) and the internal consistency was studied using alpha-Cronbach. Concordance was evaluated by intra- and inter-observer study. The gold standard was the classification performed by two evaluators after assessing the patient's medical history. The cut-off point for considering the patient as a CCP was established using the ROC curve. RESULTS: The initial version included 43 items with a global content validity index (CVI) of 0.94. A total of 180 patients were included. After the CFA, one item was eliminated, so the final version consists of 42 items with an CVI of 0.95. The alpha-Cronbach value was 0.723. The intraclass correlation coefficient of the test-retest analysis was 0.998 and 0.996 for the inter-observer study. The cut-off point for considering a patient as a CCP was established at 6.5 points, with this results we obtained a sensitivity of 98% and specificity of 94%. CONCLUSIONS: The PedCom Scale is an easy-to-use tool focused on the identification of the CCP. In our sample, it presented satisfactory levels of internal consistency and adequate levels of intra- and inter-observer agreement, with good sensitivity and specificity for the identification of the CCP.
Godoy-Molina E; Fernández-Ferrández T; Ruiz-Sánchez JM; Cordón-Martínez A; Pérez-Frías J; Navas-López VM; Nuñez-Cuadros E
Anales de Pediatría
2022
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<a href="http://doi.org/10.1016/j.anpede.2021.10.004">10.1016/j.anpede.2021.10.004</a>
A systematic review of opioid conversion ratios used with methadone for the treatment of pain
Female; Humans; Adult; Analgesics; Middle Aged; Drug Therapy; Clinical Trials as Topic; Chronic disease; Palliative Care/methods; Pain/drug therapy; Methadone/therapeutic use; Opioid/therapeutic use; Statistics as Topic; Combination
OBJECTIVE: Review and analyze the evidence base comprising methadone conversion methods and associated dosing ratios for the treatment of pain. DESIGN: Systematic review. METHODS: Clinical trials and retrospective analyses, case series, and case reports of human subjects published in the English language between January 1966 and June 2006 were included; review articles and reports with incomplete opioid data were excluded. Scatterplots displayed the relationship between previous morphine dose and final methadone dose and dose ratio. Correlation analyses were conducted using Pearson's and Spearman's correlation coefficient with a one-tailed test of significance. RESULTS: Twenty-two clinical studies and 19 case reports or series were reviewed (N = 730 patients). Methadone rotations were most common in cancer patients (N = 625, 88.9%) and those prescribed morphine (N = 259 patients, 41.7% of rotations where prerotation opioid was identified [N = 621]) or hydromorphone (N = 234 patients, 37.7% of rotations). In clinical studies, the most common reason for switching to methadone was a combination of inadequate analgesia and adverse effects (N = 254, 38.6%). Despite various approaches, 46-89% of rotations were successful. Overall, there was a relatively strong, positive correlation between the previous morphine dose and the final methadone dose and dose ratio, but ratios varied widely. CONCLUSIONS: There was no evidence to support the superiority of one method of rotation to methadone over another. Patients may be successfully rotated to methadone despite discrepancies between rotation ratios initially used and those associated with stabilization. Further research is needed to identify patient-level factors that may explain the wide variance in successful methadone rotations.
2008
Weschules DJ; Bain KT
Pain Medicine (malden, Mass.)
2008
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Journal Article
<a href="http://doi.org/10.1111/j.1526-4637.2008.00461.x" target="_blank" rel="noreferrer">10.1111/j.1526-4637.2008.00461.x</a>
Access to paediatric palliative care in children and adolescents with complex chronic conditions: A retrospective hospital-based study in Brussels, Belgium
adolescent; article; Belgium; cardiovascular disease; child; chronic disease; complex chronic condition; congenital disorder; data base; female; gastrointestinal disease; genetic disorder; groups by age; health care access; hematologic disease; hospital; hospital admission; hospitalized adolescent; hospitalized child; human; Icd-9; immune deficiency; infant; length of stay; major clinical study; male; malignant neoplasm; metabolic disorder; morbidity; neurologic disease; newborn; palliative therapy; patient care; patient referral; pediatric patient; pediatric ward; priority journal; respiratory tract disease; retrospective study; urinary tract disease
BACKGROUND: Paediatric complex chronic conditions (CCCs) are life-limiting conditions requiring paediatric palliative care, which, in Belgium, is provided through paediatric liaison teams (PLTs). Like the number of children and adolescents with these conditions in Belgium, their referral to PLTs is unknown. OBJECTIVES: The aim of the study was to identify, over a 5-year period (2010-2014), the number of children and adolescents (0-19 years) living with a CCC, and also their referral to PLTs. METHODS: International Classification of Disease codes (ICD-9) corresponding to a CCC, as described by Feudtner et al, and national registration numbers were extracted from the databases of all hospitals (n=8) and PLTs (n=2) based in the Brussels region. Aggregated data and pseudonymised national registration number were transmitted to the research team by a Trusted Third Party (eHealth). Ages and diagnostic categories were calculated using descriptive statistics. RESULTS: Over 5 years (2010-2014) in the Brussels region, a total of 22 721 children/adolescents aged 0-19 years were diagnosed with a CCC. Of this number, 22 533 were identified through hospital registries and 572 through PLT registries. By comparing the registries, we found that of the 22 533 children/adolescents admitted to hospital, only 384 (1.7%) were also referred to a PLT. CONCLUSION: In Belgium, there may be too few referrals of children and adolescents with CCC to PLTs that ensure continuity of care.
Friedel M; Gilson A; Bouckenaere D; Brichard B; Fonteyne C; Wojcik T; De Clercq E; Guillet A; Mahboub A; Lahaye M; Aujoulat I
BMJ Paediatrics Open
2019
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<a href="http://doi.org/10.1136/bmjpo-2019-000547" target="_blank" rel="noreferrer noopener">10.1136/bmjpo-2019-000547</a>
Active and passive coping strategies in chronic pain patients
Female; Humans; Male; Pain; Pain Measurement; Adult; Questionnaires; Chronic disease; Aged; Middle Aged; Depression; Reproducibility of Results; Adaptation; Psychological; Sex Characteristics
This study assessed the validity of active and passive coping dimensions in chronic pain patients (n = 76) using the Coping Strategies Questionnaire and the Vanderbilt Pain Management Inventory. The validity of active and passive coping dimensions was supported; passive coping was strongly related to general psychological distress and depression, and active coping was associated with activity level and was inversely related to psychological distress. In addition, the Coping Strategies Questionnaire was found to be a more psychometrically sound measure of active and passive coping than the Vanderbilt Pain Management Inventory.
1996-03
Snow-Turek AL; Norris MP; Tan G
Pain
1996
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Journal Article
<a href="http://doi.org/10.1016/0304-3959(95)00190-5" target="_blank" rel="noreferrer">10.1016/0304-3959(95)00190-5</a>
Adjustment to chronic pain: the role of pain acceptance, coping strategies, and pain-related cognitions
Female; Humans; Male; Pain; Adult; Chronic disease; Aged; Middle Aged; Culture; Sick Role; Sex Factors; Activities of Daily Living; Depression; Internal-External Control; Psychometrics; Personality Inventory; Anxiety; Behavior Therapy; Adaptation; Psychological; Models; Statistical; Helplessness; Learned; Software; Mathematical Computing
BACKGROUND: Previous research has found that acceptance of pain is more successful than coping variables in predicting adjustment to pain. PURPOSE: To compare the influence of acceptance, pain-related cognitions and coping in adjustment to chronic pain. METHODS: One hundred seventeen chronic pain patients attending the Clinical Pain Unit were administered a battery of questionnaires assessing pain acceptance, active and passive coping, pain-related cognitions, and adjustment. RESULTS: The influence of acceptance, coping, and cognition on all the adjustment variables was considered simultaneously via Structural Equation Modeling using LISREL 8.30 software. A multigroup analysis showed that the male and female samples did not significantly differ regarding path coefficients. The final model showed that acceptance of pain determined functional status and functional impairment. However, coping measures had a significant influence on measures of emotional distress. Catastrophizing self-statements significantly influenced reported pain intensity and anxiety; resourcefulness beliefs had a negative and significant influence on depression. CONCLUSIONS: These findings suggest that acceptance may play a critical role in the maintenance of functioning and, with this aim, acceptance-based treatments are promising to avoid the development of disability. They also lend support to the role of control beliefs and of active coping to maintain a positive mood. Acceptance and coping are presented as complementary approaches.
2007-04
Esteve R; Ramírez-Maestre C; López-Marínez AE
Annals Of Behavioral Medicine: A Publication Of The Society Of Behavioral Medicine
2007
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Journal Article
<a href="http://doi.org/10.1080/08836610701309724" target="_blank" rel="noreferrer">10.1080/08836610701309724</a>
Admission factors associated with nutritional status deterioration and prolonged pediatric intensive care unit stay in critically ill children: PICU-ScREEN multicenter study
Child; Child Preschool; chronic disease; Critical Illness; Humans; Infant; Intensive Care Units Pediatric; length of stay; Length of Stay; malnutrition; Malnutrition; nutritional status; Nutritional Status; outcomes; pediatric intensive care unit; Prospective Studies; Retrospective Studies
BACKGROUND: Early identification of patients in the pediatric intensive care unit (PICU) at risk of nutritional status (NS) deterioration and poor outcomes is desirable. We aimed to identify factors associated with NS deterioration and prolonged PICU stay. METHODS: Prospective cohort study in eight Brazilian PICUs with children <18 years with a PICU stay >72h. We used multivariable logistic regression to identify the clinical, laboratory, and nutrition variables at admission that were associated with outcomes. NS deterioration was defined as the reduction in weight-for-age, body mass index-for-age or mid-upper arm circumference-for-age z-score ≥1 during PICU stay. Prolonged PICU stay was defined as ≥13 days. RESULTS: We enrolled 363 eligible patients, median age 11.3 months (interquartile range:3.1-45.6) and 46% had at least one complex chronic condition (CCC). NS deterioration was observed in 23% of participants and was associated with CCC (odds ratio [OR]:2.71; 95% confidence interval [CI]:1.44-5.09), after adjusting for severity risk score, leukocyte count, obesity, and PICU site. Prolonged PICU stay was associated with age <2 years (OR:1.95; 95%CI:1.03-3.66), fluid overload (>10%) over the first 72h (OR:2.66; 95%CI:1.50-4.73), and hypoalbuminemia (<3.0 g/dL) (OR:2.05; 95%CI:1.12-3.76), after adjusting for CCC, severity risk score, undernutrition, early nutrition therapy, and PICU site. CONCLUSIONS: CCC at admission was associated with NS deterioration. Age <2 years, fluid overload, and hypoalbuminemia at PICU admission were associated with prolonged PICU stay. These factors must be further evaluated as part of an admission nutrition screening tool for critically ill children.
Ventura JC; Oliveira LDA; Silveira TT; Hauschild DB; Mehta NM; Moreno YMF; PICU-ScREEN Study Group
Journal of Parenteral and Enteral Nutrition
2022
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<a href="http://doi.org/10.1002/jpen.2116" target="_blank" rel="noreferrer noopener">10.1002/jpen.2116</a>
Analgesic effect of the synthetic cannabinoid CT-3 on chronic neuropathic pain: a randomized controlled trial
Female; Humans; Male; Pain Measurement; Adult; Analgesics; Middle Aged; Double-Blind Method; Cross-Over Studies; Non-U.S. Gov't; Research Support; Chronic disease; Hyperalgesia/complications/drug therapy; Non-Narcotic/therapeutic use; Pain/complications/drug therapy; Tetrahydrocannabinol/analogs & derivatives/therapeutic use
CONTEXT: 1',1'dimethylheptyl-Delta8-tetrahydrocannabinol-11-oic acid (CT-3), a potent analog of THC-11-oic acid, produces marked antiallodynic and analgesic effects in animals without evoking the typical effects described in models of cannabinoids. Therefore, CT-3 may be an effective analgesic for poorly controlled resistant neuropathic pain. OBJECTIVE: To examine the analgesic efficacy and safety of CT-3 in chronic neuropathic pain in humans. DESIGN AND SETTING: Randomized, placebo-controlled, double-blind crossover trial conducted in Germany from May-September 2002. PARTICIPANTS: Twenty-one patients (8 women and 13 men) aged 29 to 65 years (mean, 51 years) who had a clinical presentation and examination consistent with chronic neuropathic pain (for at least 6 months) with hyperalgesia (n = 21) and allodynia (n = 7). INTERVENTIONS: Patients were randomized to two 7-day treatment orders in a crossover design. Two daily doses of CT-3 (four 10-mg capsules per day) or identical placebo capsules were given during the first 4 days and 8 capsules per day were given in 2 daily doses in the following 3 days. After a washout and baseline period of 1 week each, patients crossed over to the second 7-day treatment period. MAIN OUTCOME MEASURES: Visual analog scale (VAS) and verbal rating scale scores for pain; vital sign, hematologic and blood chemistry, and electrocardiogram measurements; scores on the Trail-Making Test and the Addiction Research Center Inventory-Marijuana scale; and adverse effects. RESULTS: The mean differences over time for the VAS values in the CT-3-placebo sequence measured 3 hours after intake of study drug differed significantly from those in the placebo-CT-3 sequence (mean [SD], -11.54 [14.16] vs 9.86 [21.43]; P =.02). Eight hours after intake of the drug, the pain scale differences between groups were less marked. No dose response was observed. Adverse effects, mainly transient dry mouth and tiredness, were reported significantly more often during CT-3 treatment (mean [SD] difference, -0.67 [0.50] for CT-3-placebo sequence vs 0.10 [0.74] for placebo-CT-3 sequence; P =.02). There were no significant differences with respect to vital signs, blood tests, electrocardiogram, Trail-Making Test, and Addiction Research Center Inventory-Marijuana scale. No carryover or period effects were observed except on the Trail-Making Test. CONCLUSIONS: In this preliminary study, CT-3 was effective in reducing chronic neuropathic pain compared with placebo. No major adverse effects were observed.
2003
Karst M; Salim K; Burstein S; Conrad I; Hoy L; Schneider U
Jama
2003
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Journal Article
<a href="http://doi.org/10.1001/jama.290.13.1757" target="_blank" rel="noreferrer">10.1001/jama.290.13.1757</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>
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>
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>
Balancing pandemic public health restrictions and family support at the end of life: palliative care and bereavement experiences of parents whose child died during the COVID-19 pandemic
child; Canada; terminal care; article; controlled study; female; human; male; chronic disease; social support; palliative therapy; interview; parental attitude; health care policy; health care access; health service; adolescent; infant; physical activity; public health; qualitative research; coping behavior; coronavirus disease 2019; risk assessment; health status; personal experience; bereavement support; health care facility; family support; pandemic; infection control
Background: Little is known about the impact of the COVID-19 pandemic on families of children with chronic life-limiting conditions who died during the COVID-19 pandemic. Methods: In this qualitative study, parents of a child (< 18 years) who died during the COVID-19 pandemic from an underlying chronic medical condition were interviewed to explore how the pandemic impacted end-of-life care and bereavement experiences. Parents of children followed by the pediatric palliative care service were recruited from a large children's hospital in eastern Canada. Results: Twenty bereaved parents, consisting of 12 mothers and 8 fathers, participated in individual interviews between January and December 2021. Findings identified impacts of the COVID-19 pandemic on children's end-of-life care, experiences in hospital and at home, and family bereavement processes and experiences. Most parents experienced substantial worry about their child's physical status and the additional risk of COVID-19 given her/his vulnerability. Parents also struggled to navigate public health protocols as they attended to their child's needs and their family's desire for engagement and support. Key facilitators that helped families cope included a strong network of formal and informal supports. Conclusion: Implications highlight the need to critically reflect on pandemic care in the context of co-occurring end-of-life processes. Findings amplify the need to balance necessary infection control practices with access to essential supports for families.
Rapoport A; Nicholas DB; Zulla RT
BMC Palliative Care
2023
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<a href="http://doi.org/10.1186/s12904-023-01280-8" target="_blank" rel="noreferrer noopener">10.1186/s12904-023-01280-8</a>
Benefits of an add-on treatment with the synthetic cannabinomimetic nabilone on patients with chronic pain--a randomized controlled trial
Female; Humans; Male; Middle Aged; Treatment Outcome; Anti-Anxiety Agents; Double-Blind Method; Cross-Over Studies; quality of life; Chronic disease; Pain/drug therapy; Pain Measurement/drug effects; Adjuvant; Cannabinoids/administration & dosage; Chemotherapy; Placebo Effect; Tetrahydrocannabinol/administration & dosage/analogs & derivatives
OBJECTIVE: The aim of this study was to investigate the efficacy and efficiency of an add-on treatment with the synthetic cannabinomimetic nabilone on patients with chronic pain. Of major interest were the evaluation of the influence the treatment had on pain and on quality of life as well as the subjective assessment of positive effects and side effects by the study participants. METHODS: The placebo-controlled double-blinded pilot study was divided into a 14 week cross-over period (two 4 week medication phases plus wash-out phases) followed by a 16 week medication switch period with free choice of the study drugs (drug A and drug B) by the study participants. The principal inclusion criterion was chronic therapy-resistant pain in causal relationship with a pathologic status of the skeletal and locomotor system. The study participants chose the dosage of the study drug themselves (between 1 und 4 capsules/day, in the case of nabilone this corresponds to (1/4)-1 mg/day). Pain intensity was assessed by a visual analogue scale (VAS), quality of life by the Mezzich and Cohen QOL-score. RESULTS: Altogether, 30 patients were included and analyzed. From the results, it is obvious that throughout the cross-over periods the nabilone treatment was superior (medians [25%-; 75%-percentiles]: nabilone/placebo): decrease of the average spinal pain intensity within the last 4 weeks (DeltaVAS) 0.9 [0.0; 2.0] / 0.5 [0.0; 1.7], decrease of the current spinal pain intensity (DeltaVAS) 0.6 [0.0; 2.5] / 0.0 [-1.0, 1.0] (p = .006), decrease of the average headache intensity within the last 4 weeks (DeltaVAS) 1.0 [-1.0; 2.4] / 0.2 [-0.9; 1.0], increase of the number of days without headache within the last 4 weeks 2.0 [0.0; 6.5] / 0.0 [-5.0; 4.0], increase of the quality of life (DeltaQOL-Score) 5.0 [0.8; 10.8] / 2.0 [-2.3; 8.0]. In the medication switch period, the number of study participants who favoured nabilone (nabilone intake > or =85% of all medication days) was more than 4 times higher than those who favoured placebo. The number of days with nabilone intake was clearly higher than the number with placebo intake (medians: 89% vs. 11% of all medication days, p = .003). CONCLUSION: In summary, the study results allow the conclusion that a majority of patients with chronic pain classify nabilone intake in addition to the standard treatment as a measure with a positive individual benefit-riskratio. Thus, this kind of treatment may be an interesting and attractive enrichment of analgetic therapy concepts.
2006
Pinsger M; Schimetta W; Volc D; Hiermann E; Riederer F; Polz W
Wiener Klinische Wochenschrift
2006
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Journal Article
<a href="http://doi.org/10.1007/s00508-006-0611-4" target="_blank" rel="noreferrer">10.1007/s00508-006-0611-4</a>
Bereavement
Palliative Care; Terminal Care; Terminally Ill; Longitudinal Studies; Children; Chronic disease
Davies B; Worder W; Orloff S; Gudsmundsdottir M; Toce S; Sumner L
Palliative Care For Infants, Children And Adolescents: A Practical Handbook
2004
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).
Book/Book Section
Between two worlds: bridging the cultures of child health and adult medicine
Child; Humans; United States; Physician-Patient Relations; Adult; Disabled Persons; Patient Participation; Continuity of Patient Care; Survivors; patient care team; decision making; Adolescent Transitions; Chronic disease; Delivery of Health Care/organization & administration; Internal Medicine/organization & administration; Pediatrics/organization & administration
1995
Rosen D
The Journal Of Adolescent Health : Official Publication Of The Society For Adolescent Medicine
1995
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Journal Article
<a href="http://doi.org/10.1016/1054-139X(95)00077-6" target="_blank" rel="noreferrer">10.1016/1054-139X(95)00077-6</a>
Brief report: family-based group intervention for young siblings of children with chronic illness and developmental disability
adolescent; Child; Female; Humans; infant; Male; Adult; Chronic disease; Follow-Up Studies; Siblings; Social Adjustment; Developmental Disabilities; Family Therapy; Analysis of Variance; Practice; Preschool; Adaptation; Psychological; Attitudes; PedPal Lit; Health Knowledge; Intervention; Interventions; sibling bereavement
OBJECTIVE: To evaluate the impact of a family-based group intervention for young siblings of children with chronic illness and developmental disability (CI/DD). METHODS: Forty-three healthy siblings (ages 4-7 years) of children with CI/DD and their parents participated in an intervention designed to address sibling challenges that cut across types of diagnostic conditions. The intervention consisted of six sessions of collateral and integrated sibling-parent groups. Measures of sibling knowledge, sibling sense of connectedness with other children in similar family circumstances, and sibling global functioning were collected before and after intervention. A subsample of 17 families completed a 3-month follow-up. RESULTS: Siblings' knowledge of the child's disorder and sibling connectedness increased significantly from pre- to posttreatment for both boys and girls, regardless of the nature of the brother or sister's condition. Sibling perceptions of self-competence increased from pre- to posttreatment, whereas parent reports of sibling behavioral functioning remained within the normal range. Improvements in sibling knowledge and connectedness maintained at follow-up. Parent satisfaction with the program was high. CONCLUSIONS: Results support more controlled evaluations of family-based intervention to improve young sibling adaptation to CI/DD.
2005-12
Lobato DJ; Kao BT
Journal of Pediatric Psychology
2005
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Journal Article
<a href="http://doi.org/10.1093/jpepsy/jsi054" target="_blank" rel="noreferrer">10.1093/jpepsy/jsi054</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>
Caregiving stress, immune function, and health: implications for research with parents of medically fragile children
Child; Humans; Health Status; Stress; Caregivers/psychology; Chronic disease; Parents/psychology; Immunity; New telomeres; Psychological/immunology
Caregiving stress has been associated with considerable demands imposed on parents responsible for the physical and emotional care of medically fragile children. With health care advances in medicine and technology, there are a growing number of children with chronic conditions and disabilities (i.e., the medically fragile) surviving longer and being cared for almost exclusively in the home by parents. The physical strains, financial constraints, emotional effects, and social isolation experienced by parents caring for children with such complex medical needs may ultimately impact their physical and emotional health. Stress associated with the caregiving of older adults has been shown to negatively impact on health and immune functioning with the potential for associated morbidity. Studies exploring the relationship of stress with biological markers of immune functioning in parents have not been widely conducted. Therefore, there is a great opportunity in parent-child health for researchers to investigate implications of stress on immune functioning and health outcomes in parents caring for medically fragile children at home. The purpose of this review article will be to provide an overview of the literature related to caregiving stress and immune functioning and to discuss implications for research in this area with parents of medically fragile children.
2004
Kuster PA; Merkle CJ
Issues In Comprehensive Pediatric Nursing
2004
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Journal Article
<a href="http://doi.org/10.1080/01460860490884165" target="_blank" rel="noreferrer">10.1080/01460860490884165</a>
Children With Complex Chronic Conditions: A Multifaceted Contemporary Medical Challenge Not Restricted to PICUs
Child; child; human; palliative therapy; Only Child; comorbidity; editorial; chronic disease
Widespread primary care policies coupled with the advent of tertiary and quaternary care facilities promoted an impressive reduction of pediatric mortality in the last 50 years worldwide. The better care provided to survivors led to a significant increase in the number of pediatric patients with special medical needs. The 2009–2010 National Survey of Children with Special Health Care Needs estimated that 15.1% (11.2 million children) of U.S. children have some kind of medical dependency and that 23% of households with children include at least one child with a special healthcare need (1). Importantly, pediatric patients with special medical needs present wide variation in terms of their medical complexity, functional limitations, and resource need (2,3). [...]
Piva J; Fontela P
Pediatric Critical Care Medicine
2020
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<a href="http://doi.org/10.1097/PCC.0000000000002228" target="_blank" rel="noreferrer noopener">10.1097/PCC.0000000000002228</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>
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>
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
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<a href="http://doi.org/10.1080/23294515.2018.1430709" target="_blank" rel="noreferrer noopener">10.1080/23294515.2018.1430709</a>
Chronic abdominal pain in children: an update
Child; Female; Humans; Male; Pain Measurement; Prevalence; Prognosis; Socioeconomic Factors; Severity of Illness Index; Risk Assessment; Combined Modality Therapy; Psychology; Education; adolescent; Preschool; PedPal Lit; Chronic disease; continuing; Medical; Abdominal Pain/diagnosis/epidemiology/therapy; Gastrointestinal Diseases/diagnosis/epidemiology/therapy; Missouri/epidemiology
Despite the fact that chronic abdominal pain is a common complaint in children and adolescents, the complexity of this condition only recently has begun to be understood. This article summarizes new advances in the diagnosis, conceptualization, and treatment of chronic abdominal pain. Implications for effective assessment and treatment within the pediatric primary care setting are discussed.
2006
Schurman JV; Friesen CA
Missouri Medicine
2006
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Journal Article
Chronic constipation
Humans; Chronic disease; Cathartics/therapeutic use; Manometry; Biofeedback (Psychology); Constipation/diagnosis/etiology/physiopathology/therapy; Defecation; Defecography; Dietary Fiber/administration & dosage
2003
Lembo A; Camilleri M
The New England Journal Of Medicine
2003
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Journal Article
<a href="http://doi.org/10.1056/NEJMra020995" target="_blank" rel="noreferrer">10.1056/NEJMra020995</a>
Chronic constipation and fecal incontinence in children with neurological and neuromuscular handicap
Child; Humans; Disabled Persons; Q3 Literature Search; Chronic disease; Nervous System Diseases/complications; Neuromuscular Diseases/complications; Constipation/complications/therapy; Fecal Incontinence/complications/therapy
1997
Di Lorenzo C
Journal Of Pediatric Gastroenterology And Nutrition
1997
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Journal Article
<a href="http://doi.org/10.1097/00005176-199700002-00018" target="_blank" rel="noreferrer">10.1097/00005176-199700002-00018</a>
Chronic hypoxia selectively augments rat pulmonary artery Ca2+ and K+ channel-mediated relaxation.
Male; Animals; Rats; Chronic disease; Inbred Strains; Anoxia/me [Metabolism]; Calcium Channels/ph [Physiology]; Potassium Channels/ph [Physiology]; Pulmonary Artery/me [Metabolism]; Vasoconstriction; Anoxia/pp [Physiopathology]; Calcium/me [Metabolism]; Cyclic AMP/ph [Physiology]; Cyclic GMP/ph [Physiology]; Endothelium; Extracellular Space/me [Metabolism]; Pulmonary Artery/de [Drug Effects]; Pulmonary Artery/pp [Physiopathology]; Vascular/ph [Physiology]; Vasodilator Agents/pd [Pharmacology]
The initiating event in hypoxic pulmonary hypertension is felt to be sustained hypoxic vasoconstriction, ultimately leading to vascular remodeling and fixed pulmonary hypertension. During the initial vasospastic phase endogenous vasodilatory pathways may serve to ameliorate the development of pulmonary hypertension. However, various studies in the systemic and pulmonary circulations have shown that chronic hemodynamic stress alters both endothelial and smooth muscle cell function. The effect of chronic hypoxia in rats was therefore tested on three major vasodilatory pathways: 1) endothelium-dependent relaxation (using endothelium-derived relaxing factor agonists and antagonists); 2) smooth muscle cell cyclic nucleotide-mediated relaxation [using guanosine and adenosine 3',5'-cyclic monophosphate (cGMP and cAMP) agonists]; and 3) ion channel-dependent relaxation (using K+ channel agonists and Ca2+ channel antagonists). It was found that short-term exposure (72 h) to hypoxia caused augmentation of K+ and Ca2+ channel-dependent relaxation with no effect on endothelium-dependent or cyclic nucleotide-mediated relaxation. More prolonged exposure (4-5 wk) was additionally associated with inhibition of endothelium-dependent relaxation and smooth muscle cell cGMP-mediated relaxation. There was no effect on either basal modulation of tone by the endothelium, cAMP-mediated relaxation, or systemic vessel relaxation. It is concluded that an early response to hemodynamic stress in the pulmonary circulation is alteration in smooth muscle cell ion channel function and/or Ca2+ homeostasis.
1992
Rodman DM
The American Journal Of Physiology
1992
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Journal Article
<a href="http://doi.org/10.1152/ajplung.1992.263.1.l88" target="_blank" rel="noreferrer">10.1152/ajplung.1992.263.1.l88</a>
Chronic illness in adolescents
Humans; Sick Role; Australia; Adolescent Behavior; adolescent; Adolescent Transitions; Chronic disease
2003
Sawyer MG; Couper JJ; Martin AJ; Kennedy JD
The Medical Journal Of Australia
2003
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Journal Article
<a href="http://doi.org/10.1016/s0031-3955(16)33077-2" target="_blank" rel="noreferrer">10.1016/s0031-3955(16)33077-2</a>
Chronic musculoskeletal and other idiopathic pain syndromes
Child; Female; Humans; Male; Attitude to Health; Parent-Child Relations; Risk Factors; adolescent; Syndrome; patient care team; Chronic disease; Cognitive Therapy; Musculoskeletal Diseases/complications/psychology/therapy; Pain/etiology/psychology/therapy
2001
Malleson PN; Connell H; Bennett SM; Eccleston C
Archives Of Disease In Childhood
2001
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Journal Article
<a href="http://doi.org/10.1136/adc.84.3.189" target="_blank" rel="noreferrer">10.1136/adc.84.3.189</a>
Chronic pain in adolescents: evaluation of a programme of interdisciplinary cognitive behaviour therapy
Child; Female; Humans; Male; Pain Measurement; Adult; Treatment Outcome; Program Evaluation; Health Status Indicators; adolescent; patient care team; Chronic disease; Psychiatric Status Rating Scales; Cognitive Therapy/methods; Absenteeism; Family Therapy/methods; Pain/rehabilitation; Schools/statistics & numerical data
Aim: To determine the effectiveness of an interdisciplinary cognitive behavioural treatment for adolescents with chronic pain. METHODS: Fifty seven adolescents (mean age 14.28 years) with chronic pain and 57 accompanying adults underwent an interdisciplinary three week residential programme of group cognitive behavioural therapy. Mean chronicity of pain was 4.02 years; 75% were absent from full time education (mean absence 17 months). RESULTS: Post-treatment adolescents reported significant improvements for self report of disability (mean difference 3.37 (95% CI 0.65 to 6.09)), physical function (mean difference timed walk of 2.61 seconds (1.02 to 4.2) and sit to stand of 3.22 per minute (0.79 to 5.65)). At three months post-treatment adolescents maintained physical improvements and reduced anxiety (mean difference 1.7 (0.72 to 2.67)), disability (mean difference 4.3 (1.44 to 7.17)), and somatic awareness (mean difference 4.43 (1.53 to 7.33)). Following treatment adults reported significant improvement in their report of adolescent disability (mean difference 4.43 (2.17 to 6.7)), adult anxiety (mean difference 1.73 (0.54 to 2.92)), depression (mean difference 1.16 (0.34 to 1.98)), and parental stress (mean difference 10.81 (2.91 to 18.78)). At three months significant improvements were maintained. At three months 64% improved school attendance; 40% had returned to full time education. CONCLUSIONS: Interdisciplinary cognitive behavioural pain management (with family involvement) is a promising approach to the management of pain, pain related distress, and disability.
2003
Eccleston C; Malleson PN; Clinch J; Connell H; Sourbut C
Archives Of Disease In Childhood
2003
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Journal Article
<a href="http://doi.org/10.1136/adc.88.10.881" target="_blank" rel="noreferrer">10.1136/adc.88.10.881</a>
Chronic pain management and the surgeon: barriers and opportunities
Humans; Palliative Care; Pain; Analgesics; Physician's Role; patient care team; Chronic disease; Surgery; Opioid/administration & dosage/therapeutic use; Pain/therapy; Intractable/drug therapy; Neoplasms/surgery; Postoperative/drug therapy
2001
Lee KF; Ray JB; Dunn GP
Journal Of The American College Of Surgeons
2001
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Journal Article
<a href="http://doi.org/10.1016/s1072-7515(01)01091-2" target="_blank" rel="noreferrer">10.1016/s1072-7515(01)01091-2</a>
Combining single patient (N-of-1) trials to estimate population treatment effects and to evaluate individual patient responses to treatment
Humans; Outcome Assessment (Health Care); Research Design; Antidepressive Agents; Cross-Over Studies; Models; Statistical; Chronic disease; Amitriptyline/therapeutic use; Bayes Theorem; Fibromyalgia/drug therapy; Randomized Controlled Trials as Topic/statistics & numerical data; Tricyclic
When treating individual patients, physicians may face difficulties using the evidence from center-based randomized control trials (RCTs) due to limitations in these studies generalizability. Therefore, they often perform their own "informal" tests of treatment effectiveness. Single patient ("N-of-1") trials provide a structured design for more rigorous assessment of medical treatments of chronic diseases, but are applied only to the index patient. We present a hierarchical Bayesian random effects model to combine N-of-1 studies to obtain an estimate of treatment effectiveness for the population and to use this population information to aid in the evaluation of an individual patient's trial results. The model's treatment effect estimates are adjustments between the population estimate and the individual's observed results. This adjustment is based upon the within-patient and between-patient heterogeneity. We demonstrate this patient-focused method using published data from 23 N-of-1 trial results comparing amitriptyline and placebo for the treatment of fibromyalgia.
1997
Zucker DR; Schmid CH; McIntosh MW; D'Agostino RB; Selker HP; Lau J
Journal Of Clinical Epidemiology
1997
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Journal Article
<a href="http://doi.org/10.1016/s0895-4356(96)00429-5" target="_blank" rel="noreferrer">10.1016/s0895-4356(96)00429-5</a>
Community resources for children with special healthcare needs
Child; Humans; United States; Health Services Needs and Demand; Physician's Role; Community Health Services; Family/psychology; Chronic disease; social support; Pediatrics/organization & administration; Information Services
1997
Johnson CP; Blasco PA
Pediatric Annals
1997
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Journal Article
<a href="http://doi.org/10.3928/0090-4481-19971101-12" target="_blank" rel="noreferrer">10.3928/0090-4481-19971101-12</a>
Community-based Pediatric Palliative Care For Health Related Quality Of Life, Hospital Utilization And Costs Lessons Learned From A Pilot Study
Medical Complexity; Health Related Quality Of Life; Generic Core Scales; Impact; Hospital Utilization; Pilot Study; Pediatric Palliative Care; Reliability; Health Policy & Services; Illness; Cost-effectiveness; Home; Validity; Vulnerable Children; Pedsql(tm); Chronic Disease; United States; Health Care Sciences & Services
Chronic Disease; Cost-effectiveness; Health Related Quality Of Life; Hospital Utilization; Pediatric Palliative Care; Pilot Study
BACKGROUND:
Children with chronic complex-medical conditions comprise a small minority of children who require substantial healthcare with major implications for hospital utilization and costs in pediatrics. Community-Based Pediatric Palliative Care (CBPPC) provides a holistic approach to patient care that can improve their quality of life and lead to reduced costs of hospital care. This study's purpose was to analyze and report unpublished evaluation study results from 2007 that demonstrate the potential for CBPPC on Health Related Quality of Life (HRQoL) and hospital utilization and costs in light of the increasing national focus on the care of children with complex-medical conditions, including the Affordable Care Act's emphasis on patient-centered outcomes.
METHODS:
A multi-method research design used primary data collected from caregivers to determine the Program's potential impact on HRQoL, and administrative data to assess the Program's potential impact on hospital utilization and costs. Caregivers (n=53) of children enrolled in the Northeast Florida CBPPC program (Community PedsCare) through the years 2002-2007 were recruited for the Health Related Quality of Life (HRQoL) study. Children (n=48) enrolled in the Program through years 2000-2006 were included in the utilization and cost study.
RESULTS:
HRQoL was generally high, and hospital charges per child declined by $1203 for total hospital services (p=.34) and $1047 for diagnostic charges per quarter (p=0.13). Hospital length of stay decreased from 2.92 days per quarter to 1.22 days per quarter (p<.05).
CONCLUSION:
The decrease in hospital utilization and costs and the high HRQoL results indicate that CBPPC has the potential to influence important outcomes for the quality of care available for children with complex-medical conditions and their caregivers.
J Goldhagen
Bmc Palliative Care
2016
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).
DOI: 10.1186/s12904-016-0138-z
Comparative clinical efficacy and safety of immediate release and controlled release hydromorphone for chronic severe cancer pain
Female; Humans; Male; Pain Measurement; Middle Aged; Double-Blind Method; Drug Administration Schedule; Chronic disease; Pain/drug therapy/etiology; Neoplasms/complications; Delayed-Action Preparations; Hydromorphone/administration & dosage
BACKGROUND. The short elimination half-life of hydromorphone necessitates 4-hourly dosing to maintain optimal levels of analgesia in patients with chronic cancer pain. The purpose of this study was to compare the clinical efficacy and safety of controlled release hydromorphone administered every 12 hours and immediate release hydromorphone administered every 4 hours in patients with chronic severe cancer pain. METHODS: Forty-eight patients with stable chronic severe cancer pain were randomized, in a double-masked crossover study, to controlled release hydromorphone every 12 hours or immediate release hydromorphone every 4 hours for 7 days each. Pain intensity was assessed using a visual analog scale (VAS) and the Present Pain Intensity Index of the McGill Pain Questionnaire. Nausea and sedation were also assessed using a VAS. Assessments were made by the patient four times a day at 7:00 a.m., 11:00 a.m., 3:00 p.m., and 7:00 p.m. Use of rescue hydromorphone also was recorded by the patient. RESULTS: Forty-five patients completed the study (26 women, 19 men; mean age, 57.1 +/- 13.6 years) and received a mean daily dose of 76 +/- 133 mg (range, 6-768 mg). There were no significant differences between controlled release hydromorphone and immediate release hydromorphone in overall VAS pain intensity scores (19 +/- 14 vs. 20 +/- 14 mm), ordinal pain intensity scores (1.2 +/- 0.8 vs. 1.2 +/- 0.8) and pain scores by day of treatment or time of day. The daily rescue analgesic consumption during controlled release hydromorphone and immediate release hydromorphone did not differ significantly overall (1.1 +/- 1.1 vs. 1.0 +/- 1.1 doses per day) or with respect to time of day. There were no significant differences in overall VAS sedation scores (18 +/- 18 mm vs. 19 +/- 18 mm) and in overall mean VAS nausea scores (12 +/- 15 mm vs. 11 +/- 14 mm) between controlled release hydromorphone and immediate release hydromorphone. CONCLUSIONS. Controlled release hydromorphone administered every 12 hours is as effective as immediate release hydromorphone administered every 4 hours in the management of patients with chronic severe cancer pain. The benefits of controlled release hydromorphone lie in the convenience of its capsule formulation, which can be sprinkled on soft food, and its 12-hour duration of action, which allows patients uninterrupted sleep and improved compliance.
Hays H; Hagen N; Thirlwell M; Dhaliwal H; Babul N; Harsanyi Z; Darke AC
Cancer
1994
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/10.1002/1097-0142(19940915)74:6%3C1808::aid-cncr2820740625%3E3.0.co" target="_blank" rel="noreferrer">10.1002/1097-0142(19940915)74:6%3C1808::aid-cncr2820740625%3E3.0.co</a>