Age limits and transition of health care in pediatric emergency medicine
Child; Female; Humans; Male; United States; Pregnancy; Pediatrics; Adult; Data Collection; Age Factors; Cystic Fibrosis; Hospitals; Emergency Medicine; Organizational Policy; Emergency Service; adolescent; Adolescent Transitions; Pregnancy in Adolescence; Pediatric/statistics & numerical data; Hospital/statistics & numerical data; General/statistics & numerical data
OBJECTIVE: To describe the practice reported by pediatric emergency department (PED) medical directors regarding age limits and transition of health care in their emergency departments and institutions. METHODS: A 28-question survey was sent by e-mail to 116 PED medical directors. Descriptive statistics were used to report results; chi tests were used for comparing categorical data. RESULTS: The survey was completed by 73 PED medical directors (63%). Age-limit policies were present in 58 (79%) of the PEDs, and 56 reported a specific age. The 18th and 21st birthdays were the most common specific ages cited. Thirty-six PEDs (64%) had an age limit of younger than 21 years. Pediatric emergency departments with age limits of 21 years or older versus younger than 21 years had a significantly higher rate of being associated with freestanding children's hospitals (P = 0.037). Appropriate exceptions to the age-limit policy included patients both over and under the age limit. The most common overage limit exception was cystic fibrosis, and the most common underage limit exception was teenage pregnancy. Thirteen PED medical directors (18%) were aware of a transition-of-care (pediatric to adult care provider) policy or work group at their institution, and 47 (64%) thought that such a work group would be valuable to addressing transition-of-care issues. CONCLUSION: In pediatric emergency medicine, the age of transition from pediatric to adult emergency care providers is variable both between and within institutions. Most PEDs have age limits of younger than 21 years. Most PED medical directors support a multidisciplinary work group or committee as a method of addressing transition of care. Known barriers to transition of care previously reported in the literature are reviewed.
2007
Dobson JV; Bryce L; Glaeser PW; Losek JD
Pediatric Emergency Care
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/10.1097/01.pec.0000248701.87916.05" target="_blank" rel="noreferrer">10.1097/01.pec.0000248701.87916.05</a>
Parent resuscitation preferences for young people with severe developmental disabilities.
Child; Female; Humans; Male; Adult; Attitude to Health; Choice Behavior; Massachusetts; Program Evaluation; Analysis of Variance; Organizational Policy; adolescent; Preschool; retrospective studies; Parents/education/psychology; DNAR; Attitude to Health; Developmental Disabilities/th [Therapy]; Health Education/og [Organization & Administration]; Parents; Resuscitation Orders/px [Psychology]; Advance Care Planning/og [Organization & Administration]; Advance Care Planning/organization & administration; Consent Forms; Developmental Disabilities/co [Complications]; Developmental Disabilities/complications/therapy; documentation; Health Education/organization & administration; Parents/ed [Education]; Parents/px [Psychology]; Resuscitation Orders/psychology; Skilled Nursing Facilities/og [Organization & Administration]; Skilled Nursing Facilities/organization & administration; Treatment Refusal/psychology; Treatment Refusal/px [Psychology]
OBJECTIVE: To determine the relationship of providing explanatory information regarding resuscitation to DNR status for parents and guardians of young people who reside in a pediatric skilled nursing facility., DESIGN: Retrospective, quasi-experimental study of policy change, with each individual serving as his or her own control. Interval comparisons were made between resuscitation choices before and after information was provided to families. For those who were originally in the full resuscitation group, comparisons were also made between those who changed to DNR and those who did not., SETTING: Pediatric skilled nursing facility in Massachusetts., PARTICIPANTS: Sixty individuals with severe mental retardation and complex medical problems, between the ages of approximately 2 and 32 years., MEASUREMENTS: Review of records regarding resuscitation choices and changes, with each person serving as his or her own control. Both univariate and multivariate analyses were performed on individuals who were in the full resuscitation group at the initiation of the study to determine distinguishing characteristics between those who remained in that group from those who changed to DNR., RESULTS: The families of 11 (18%) of 60 patients had requested DNR orders prior to requirement of written preference for resuscitation or DNR in the event of cardiopulmonary arrest. After provision of informative material, there was an increase to 26 patients (43%) who were designated DNR (P < . 001). There was no significant difference in characteristics between the groups that changed to DNR and those that remained full resuscitation, although there was a marginal trend of children in the group with an acquired etiology for their developmental disabilities were more apt to have their resuscitation status changed than those with congenital diagnoses (P = .053)., CONCLUSION: When families are provided with explanatory information regarding resuscitation in a nonacute, pediatric skilled nursing home setting, there is a significant increase in request for DNR.
2006
Friedman SL
Journal Of The American Medical Directors Association
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/10.1016/j.jamda.2005.06.004" target="_blank" rel="noreferrer">10.1016/j.jamda.2005.06.004</a>
Rare essentials: drugs for rare diseases as essential medicines
Humans; decision making; Health Services Accessibility; Needs Assessment; Risk Assessment; Cost-Benefit Analysis; Organizational Policy; Public Health Administration; Policy Making; Rare Diseases; Organizational; Resource Allocation; Health Priorities; Drugs; World Health Organization; Essential; Orphan Drug Production; Social Justice
Since 1977, the WHO Model List of Essential Medicines (EML), published by WHO, has provided advice for Member States that struggle to decide which pharmaceutical technologies should be provided to patients within their public health systems. Originating from outside WHO, an incentive system has been put in place by various governments for the development of medicines for rare diseases ("orphan drugs"). With progress in pharmaceutical research (e.g. drugs targeted for narrower indications), these medicines will feature more often on future public health agendas. However, when current definitions for selecting essential medicines are applied strictly, orphan drugs cannot be part of the WHO Essential Medicines Programme, creating the risk that WHO may lose touch with this field. In our opinion WHO should explicitly include orphan drugs in its policy sphere by composing a complementary Orphan Medicines Model List as an addition to the EML. This complementary list of "rare essentials" could aid policy-makers and patients in, for example, emerging countries to improve access to these drugs and stimulate relevant policies. Furthermore, inconsistencies in the current EML with regard to medicines for rare diseases can be resolved. In this paper we propose selection criteria for an Orphan Medicines Model List that could form a departure point for future work towards an extensive WHO Orphan Medicines Programme.
2006-09
Stolk P; Willemen Marjolein JC; Leufkens HGM
Bulletin Of The World Health Organization
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/10.2471/blt.06.031518" target="_blank" rel="noreferrer">10.2471/blt.06.031518</a>
Uses of drugs not described in the package insert (off-label uses)
Child; Humans; United States; United States Food and Drug Administration; Prescriptions; Organizational Policy; Drug; Clodronate; Drug Approval; Societies; Adverse Drug Reaction Reporting Systems/legislation & jurisprudence; Drug Labeling/legislation & jurisprudence; Internet/legislation & jurisprudence; Medical/standards; Pediatrics/legislation & jurisprudence/standards; Physician's Practice Patterns/legislation & jurisprudence
New regulatory initiatives have been designed to ensure that new drugs and biologicals include adequate pediatric labeling for the claimed indications at the time of, or soon after, approval. However, because such labeling may not immediately be available, off-label use (or use that is not included in the approved label) of therapeutic agents is likely to remain common in the practice of pediatrics. This policy statement was written to address questions practitioners have regarding off-label use. The purpose of off-label use is to benefit the individual patient. Practitioners may use their professional judgment to determine these uses. Practitioners should understand that the Food and Drug Administration does not regulate off-label use.
2002
Committee on Drugs - American Academy of Pediatrics
Pediatrics
2002
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Journal Article
<a href="http://doi.org/10.1542/peds.110.1.181" target="_blank" rel="noreferrer">10.1542/peds.110.1.181</a>
Variability among institutional review boards' decisions within the context of a multicenter trial
Humans; United States; decision making; Questionnaires; Respiration; Informed Consent; Organizational Policy; Empirical Approach; Biomedical and Behavioral Research; Multi-site Ethics; Educational Status; Respiratory Distress Syndrome; Organizational; Randomized Controlled Trials as Topic/standards; Research/standards; Professional Staff Committees/organization & administration; National Institutes of Health (U.S.); Artificial/methods; Adult/therapy; Clinical Protocols/standards; Multicenter Studies as Topic/standards; Tidal Volume
BACKGROUND: Institutional review boards (IRBs) are given discretion to interpret and apply the federal regulations governing the protection of human subjects in research. OBJECTIVE: To determine the extent of the variability among different IRBs on their approved research practices and informed consent forms within the context of a multicenter trial that used a common protocol. DESIGN: Descriptive analysis of survey information and informed consent forms. SETTING AND PARTICIPANTS: Sixteen IRBs from the institutions participating in a multicenter trial comparing lower vs. traditional tidal volume ventilation in patients with acute lung injury. MEASUREMENTS: Analysis of survey information on IRBs' approved research practices. Analysis of informed consent forms for the presence and the adequacy of description of each basic element of informed consent specified in the federal regulations. Reading levels of informed consent forms. MAIN RESULTS: Surveys and IRB-approved consent forms were obtained from all of the contacted IRBs (n = 16). Variability was observed among several of the research practices; one IRB waived the requirement for informed consent, five IRBs permitted telephone consent, and three IRBs allowed prisoners to be enrolled. Three consent forms contained all of the basic elements of informed consent outlined in the federal regulations, and 13 forms had varying numbers of these elements absent (six forms without one element, four without two, one without three, and two without four). Reading levels of the consent forms ranged from grades 8.2 to 13.4 (mean +/- sd was 11.6 +/- 1.2 grade level). CONCLUSIONS: Within a multicenter trial, IRBs reviewing a common protocol varied in several of their approved research practices and in the extent to which the basic elements of informed consent were included in their consent forms.
2001
Silverman H; Hull SC; Sugarman J
Critical Care Medicine
2001
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/10.1097/00003246-200102000-00002" target="_blank" rel="noreferrer">10.1097/00003246-200102000-00002</a>
The Delphi method?
Humans; decision making; Data Collection; Research Design; Organizational Objectives; Reproducibility of Results; Delphi Technique; Organizational Policy; Non-U.S. Gov't; Research Support; Organizational; Nursing Research/methods/organization & administration
1997
Crisp J; Pelletier D; Duffield C; Adams A; Nagy S
Nursing Research
1997
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/10.1097/00006199-199703000-00010" target="_blank" rel="noreferrer">10.1097/00006199-199703000-00010</a>