Pediatric euthanasia in Belgium: disturbing developments
Child; Humans; Palliative Care; Terminal Care; Personal Autonomy; Chronic disease; Euthanasia; Belgium; Stress; Palliative Care; Psychological; Active
2014-05
Siegel AM; Sisti DA; Caplan AL
Jama
2014
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Journal Article
<a href="http://doi.org/10.1001/jama.2014.4257" target="_blank" rel="noreferrer">10.1001/jama.2014.4257</a>
Effects of a palliative care intervention on clinical outcomes in patients with advanced cancer: the Project ENABLE II randomized controlled trial
Female; Humans; Male; Aged; Middle Aged; Treatment Outcome; Length of Stay; Patient Participation; Affect; Sickness Impact Profile; Patient Education as Topic; Emergency Service; quality of life; Hospital/utilization; Adaptation; Psychological; patient care team; Terminally Ill/psychology; social support; Health Services/utilization; Hospitalization/statistics & numerical data; Intensive Care Units/utilization; Intervention; Interventions; Kaplan-Meiers Estimate; Neoplasms/mortality/nursing/psychology/therapy; Outcomes; Palliative Care/methods
CONTEXT: There are few randomized controlled trials on the effectiveness of palliative care interventions to improve the care of patients with advanced cancer. OBJECTIVE: To determine the effect of a nursing-led intervention on quality of life, symptom intensity, mood, and resource use in patients with advanced cancer. DESIGN, SETTING, AND PARTICIPANTS: Randomized controlled trial conducted from November 2003 through May 2008 of 322 patients with advanced cancer in a rural, National Cancer Institute-designated comprehensive cancer center in New Hampshire and affiliated outreach clinics and a VA medical center in Vermont. INTERVENTIONS: A multicomponent, psychoeducational intervention (Project ENABLE [Educate, Nurture, Advise, Before Life Ends]) conducted by advanced practice nurses consisting of 4 weekly educational sessions and monthly follow-up sessions until death or study completion (n = 161) vs usual care (n = 161). MAIN OUTCOME MEASURES: Quality of life was measured by the Functional Assessment of Chronic Illness Therapy for Palliative Care (score range, 0-184). Symptom intensity was measured by the Edmonton Symptom Assessment Scale (score range, 0-900). Mood was measured by the Center for Epidemiological Studies Depression Scale (range, 0-60). These measures were assessed at baseline, 1 month, and every 3 months until death or study completion. Intensity of service was measured as the number of days in the hospital and in the intensive care unit (ICU) and the number of emergency department visits recorded in the electronic medical record. RESULTS: A total of 322 participants with cancer of the gastrointestinal tract (41%; 67 in the usual care group vs 66 in the intervention group), lung (36%; 58 vs 59), genitourinary tract (12%; 20 vs 19), and breast (10%; 16 vs 17) were randomized. The estimated treatment effects (intervention minus usual care) for all participants were a mean (SE) of 4.6 (2) for quality of life (P = .02), -27.8 (15) for symptom intensity (P = .06), and -1.8 (0.81) for depressed mood (P = .02). The estimated treatment effects in participants who died during the study were a mean (SE) of 8.6 (3.6) for quality of life (P = .02), -24.2 (20.5) for symptom intensity (P = .24), and -2.7 (1.2) for depressed mood (P = .03). Intensity of service did not differ between the 2 groups. CONCLUSION: Compared with participants receiving usual oncology care, those receiving a nurse-led, palliative care-focused intervention addressing physical, psychosocial, and care coordination provided concurrently with oncology care had higher scores for quality of life and mood, but did not have improvements in symptom intensity scores or reduced days in the hospital or ICU or emergency department visits. TRIAL REGISTRATION: clinicaltrials.gov Identifier: NCT00253383.
2009
Bakitas M; Lyons KD; Hegel MT; Balan S; Brokaw FC; Seville J; Hull JG; Li Z; Tosteson TD; Byock IR; Ahles TA
Jama
2009
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Journal Article
<a href="http://doi.org/10.1001/jama.2009.1198" target="_blank" rel="noreferrer">10.1001/jama.2009.1198</a>
Communicating with seriously ill patients: better words to say
Humans; Terminal Care; Physician-Patient Relations; Prognosis; Language; advance care planning
2009
Pantilat SZ
Jama
2009
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Journal Article
<a href="http://doi.org/10.1001/jama.2009.396" target="_blank" rel="noreferrer">10.1001/jama.2009.396</a>
Sumatriptan-naproxen for acute treatment of migraine: a randomized trial
Female; Humans; Male; Adult; Middle Aged; Double-Blind Method; Anti-Inflammatory Agents; Drug Combinations; Migraine Disorders/drug therapy; Naproxen/administration & dosage/therapeutic use; Non-Steroidal/administration & dosage/therapeutic use; Sumatriptan/administration & dosage/therapeutic use; Tablets; Vasoconstrictor Agents/administration & dosage/therapeutic use
CONTEXT: Multiple pathogenic mechanisms may be involved in generating the migraine symptom complex, and multimechanism-targeted therapy may confer advantages over monotherapy. OBJECTIVE: To evaluate the efficacy and safety of a fixed-dose tablet containing sumatriptan succinate and naproxen sodium relative to efficacy and safety of each monotherapy and placebo for the acute treatment of migraine. DESIGN, SETTING, AND PARTICIPANTS: Two replicate, randomized, double-blind, single-attack, parallel-group studies conducted among 1461 (study 1) and 1495 (study 2) patients at 118 US clinical centers who were diagnosed as having migraine and received study treatment for a moderate or severe migraine attack. INTERVENTIONS: Patients were randomized in a 1:1:1:1 ratio to receive a single tablet containing sumatriptan, 85 mg, and naproxen sodium, 500 mg; sumatriptan, 85 mg (monotherapy); naproxen sodium, 500 mg (monotherapy); or placebo, to be used after onset of a migraine with moderate to severe pain. MAIN OUTCOME MEASURES: Primary outcome measures included the percentages of patients with headache relief 2 hours after dosing, absence of photophobia, absence of phonophobia, and absence of nausea for the comparison between sumatriptan-naproxen sodium and placebo, and the percentages of patients with sustained pain-free response for the comparison between sumatriptan-naproxen sodium and each monotherapy. RESULTS: Sumatriptan-naproxen sodium was more effective than placebo for headache relief at 2 hours after dosing (study 1, 65% vs 28%; P<.001 and study 2, 57% vs 29%; P<.001), absence of photophobia at 2 hours (58% vs 26%; P<.001 and 50% vs 32%; P<.001), and absence of phonophobia at 2 hours (61% vs 38%; P<.001 and 56% vs 34%; P<.001). The absence of nausea 2 hours after dosing was higher with sumatriptan-naproxen sodium than placebo in study 1 (71% vs 65%; P = .007), but in study 2 rates of absence of nausea did not differ between sumatriptan-naproxen sodium and placebo (65% vs 64%; P = .71). For 2- to 24-hour sustained pain-free response, sumatriptan-naproxen sodium was superior at P<.01 (25% and 23% in studies 1 and 2, respectively) to sumatriptan monotherapy (16% and 14% in studies 1 and 2), naproxen sodium monotherapy (10% and 10% in studies 1 and 2), and placebo (8% and 7% in studies 1 and 2). The incidence of adverse events was similar between sumatriptan-naproxen sodium and sumatriptan monotherapy. CONCLUSION: Sumatriptan, 85 mg, plus naproxen sodium, 500 mg, as a single tablet for acute treatment of migraine resulted in more favorable clinical benefits compared with either monotherapy, with an acceptable and well-tolerated adverse effect profile. TRIAL REGISTRATION: clinicaltrials.gov Identifiers: NCT00434083 (study 1); NCT00433732 (study 2).
2007
Brandes JL; Kudrow D; Stark SR; O'Carroll CP; Adelman JU; O'Donnell FJ; Alexander WJ; Spruill SE; Barrett PS; Lener SE
Jama
2007
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Journal Article
<a href="http://doi.org/10.1001/jama.297.13.1443" target="_blank" rel="noreferrer">10.1001/jama.297.13.1443</a>
An empirical examination of the stage theory of grief
Grief; Family; Death; Physicians; Depression; Time; bereavement; Anger; design
Context The stage theory of grief remains a widely accepted model of bereavement adjustment still taught in medical schools, espoused by physicians, and applied in diverse contexts. Nevertheless, the stage theory of grief has previously not been tested empirically. Objective To examine the relative magnitudes and patterns of change over time post-loss of 5 grief indicators for consistency with the stage theory of grief. Design, Setting, and Participants Longitudinal cohort study (Yale Bereavement Study) of 233 bereaved individuals living in Connecticut, with data collected between January 2000 and January 2003. Main Outcome Measures Five rater-administered items assessing disbelief, yearning, anger, depression, and acceptance of the death from 1 to 24 months postloss. Results Counter to stage theory, disbelief was not the initial, dominant grief indicator. Acceptance was the most frequently endorsed item and yearning was the dominant negative grief indicator from 1 to 24 months postloss. In models that take into account the rise and fall of psychological responses, once rescaled, disbelief decreased from an initial high at 1 month postloss, yearning peaked at 4 months postloss, anger peaked at 5 months postloss, and depression peaked at 6 months postloss. Acceptance increased throughout the study observation period. The 5 grief indicators achieved their respective maximum values in the sequence (disbelief, yearning, anger, depression, and acceptance) predicted by the stage theory of grief. Conclusions Identification of the normal stages of grief following a death from natural causes enhances understanding of how the average person cognitively and emotionally processes the loss of a family member. Given that the negative grief indicators all peak within approximately 6 months postloss, those who score high on these indicators beyond 6 months postloss might benefit from further evaluation.
2007
Maciejewski PK; Zhang B; Block SD; Prigerson HG
Jama
2007
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Journal Article
<a href="http://doi.org/10.1001/jama.297.7.716" target="_blank" rel="noreferrer">10.1001/jama.297.7.716</a>
Deficits in Communication and Information Transfer Between Hospital-Based and Primary Care Physicians: Implications for Patient Safety and Continuity of Care
2007
Kripalani S; LeFevre F; Phillips C
Jama
2007
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Journal Article
<a href="http://doi.org/10.1001/jama.297.8.831" target="_blank" rel="noreferrer">10.1001/jama.297.8.831</a>
Adult cystic fibrosis
Humans; Male; Middle Aged; Adolescent Transitions; Cystic Fibrosis/diagnosis/epidemiology/physiopathology/therapy
Cystic fibrosis is a multisystem disease characterized primarily by chronic pulmonary infection and bronchiectasis, pancreatic exocrine impairment, and elevated sweat chloride. In the last 4 decades, new treatment strategies and aggressive nutritional management have resulted in a significant increase in expected survival, with median predicted survival in cystic fibrosis now to older than 35 years. This increase in predicted survival has also been aided by a greater appreciation of the potential variability in the presentation and severity of cystic fibrosis, resulting in identification of a growing number of mild cases. As it is estimated that within the next decade more than half of all individuals with cystic fibrosis will be aged 18 years or older, adult medicine caregivers are increasingly likely to encounter patients with cystic fibrosis and be exposed to their unique medical management.
2007
Boyle MP
Jama
2007
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Journal Article
<a href="http://doi.org/10.1001/jama.298.15.1787" target="_blank" rel="noreferrer">10.1001/jama.298.15.1787</a>
Adolescents' reports of parental knowledge of adolescents' use of sexual health services and their reactions to mandated parental notification for prescription contraception
Female; Humans; Data Collection; Parents; Logistic Models; Questionnaires; Practice; adolescent; Empirical Approach; Attitudes; Adolescent Transitions; Health Knowledge; Genetics and Reproduction; Confidentiality/legislation & jurisprudence/psychology; Contraception Behavior; Family Planning Services/legislation & jurisprudence/utilization; Parental Notification/legislation & jurisprudence; Sexual Behavior; Unsafe Sex
CONTEXT: Legislation has been proposed that would mandate parental notification for adolescents younger than 18 years (minors) obtaining prescription contraception from federally funded family planning clinics. OBJECTIVE: To determine the extent to which parents are currently aware that their teenage daughters are accessing reproductive health services and how minors would react in the face of mandated parental involvement laws for prescription birth control. DESIGN, SETTING, AND PARTICIPANTS: A total of 1526 female adolescents younger than 18 years seeking reproductive health services at a national sample of 79 family planning clinics were surveyed between May 2003 and February 2004. MAIN OUTCOME MEASURES: Proportions of minor females who reported that a parent or guardian was aware that they were at the family planning clinic and, under conditions of mandated parental involvement, proportions of minors who would access prescription contraceptives at family planning clinics or engage in unsafe sex. RESULTS: Sixty percent of minors reported that a parent or guardian knew they were accessing sexual health services at the clinic. Fifty-nine percent of all adolescents would use the clinic for prescription contraception even if parental notification were mandated. This response was less common (29.5%) among adolescents whose parents were unaware of their clinic visits and more common (79%) among those whose parents were aware. Many adolescents gave more than 1 response to mandated parental involvement. Forty-six percent would use an over-the-counter method, and 18% would go to a private physician. Seven percent said that they would stop having sex as one response, but only 1% indicated this would be their only reaction. One in 5 adolescents would use no contraception or rely on withdrawal as one response to mandated notification. CONCLUSIONS: Most minor adolescent females seeking family planning services report that their parents are aware of their use of services. Most would continue to use clinic services if parental notification were mandated. However, mandated parental notification laws would likely increase risky or unsafe sexual behavior and, in turn, the incidence of adolescent pregnancy and sexually transmitted diseases.
2005
Jones RK; Purcell A; Singh S; Finer LB
Jama
2005
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Journal Article
<a href="http://doi.org/10.1001/jama.293.3.340" target="_blank" rel="noreferrer">10.1001/jama.293.3.340</a>
Missing clinical information during primary care visits
Cross-Sectional Studies; Humans; United States; Communication; Medical Records; Family Practice/organization & administration; Primary Health Care/organization & administration
CONTEXT: The coordinating function of primary care is information-intensive and may be impeded by missing clinical information. However, missing clinical information has not been explicitly investigated in the primary care setting. OBJECTIVE: To describe primary care clinicians' reports of missing clinical information. DESIGN, SETTING, AND PARTICIPANTS: Cross-sectional survey conducted in 32 primary care clinics within State Networks of Colorado Ambulatory Practices and Partners (SNOCAP), a consortium of practice-based research networks participating in the Applied Strategies for Improving Patient Safety medical error reporting study. Two hundred fifty-three clinicians were surveyed about 1614 patient visits between May and December 2003. For every visit during 1 half-day session, each clinician completed a questionnaire about patient and visit characteristics and stated whether important clinical information had been missing. Clinician characteristics were also recorded. MAIN OUTCOME MEASURES: Reports of missing clinical information frequency, type, and presumed location; perceived likelihood of adverse effects, delays in care, and additional services; and time spent looking for missing information. Multivariate analysis was conducted to assess the relationship of missing information to patient, visit, or clinician characteristics, adjusting for potential confounders and effects of clustering. RESULTS: Clinicians reported missing clinical information in 13.6% of visits; missing information included laboratory results (6.1% of all visits), letters/dictation (5.4%), radiology results (3.8%), history and physical examination (3.7%), and medications (3.2%). Missing clinical information was frequently reported to be located outside their clinical system but within the United States (52.3%), to be at least somewhat likely to adversely affect patients (44%), and to potentially result in delayed care or additional services (59.5%). Significant time was reportedly spent unsuccessfully searching for missing clinical information (5-10 minutes, 25.6%; >10 minutes, 10.4%). After adjustment, reported missing clinical information was more likely when patients were recent immigrants (odds ratio [OR], 1.78; 95% confidence interval [CI], 1.06-2.99), new patients (OR, 2.39; 95% CI, 1.70-3.35), or had multiple medical problems compared with no problems (1 problem: OR, 1.09; 95% CI, 0.69-1.73; 2-5 problems: OR, 1.87; 95% CI, 1.21-2.89; >5 problems: OR, 2.78; 95% CI, 1.61-4.80). Missing clinical information was less likely in rural practices (OR, 0.52; 95% CI, 0.29-0.92) and when individual clinicians reported having full electronic records (OR, 0.40; 95% CI, 0.17-0.94). CONCLUSIONS: Primary care clinicians report that missing clinical information is common, multifaceted, likely to consume time and other resources, and may adversely affect patients. Additional research on missing information is needed to focus on validating clinicians' perceptions and on conducting prospective studies of its causes and sequelae.
2005
Smith PC; Araya-Guerra R; Bublitz C; Parnes B; Dickinson LM; Van Vorst R; Westfall JM; Pace WD
Jama
2005
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Journal Article
<a href="http://doi.org/10.1001/jama.293.5.565" target="_blank" rel="noreferrer">10.1001/jama.293.5.565</a>
Palliative sedation in dying patients: "we turn to it when everything else hasn't worked"
Family; U.S. Gov't; PedPal Lit; Conscious Sedation Euthanasia; Active Humans Hypnotics and Sedatives/administration & dosage Myoclonus/therapy Pain; and emotional issues they raise.; and health care workers can all benefit from talking about the complex medical; as well as to the medical and nursing staff; clinicians must understand and document which actions are consistent with an intention to relieve symptoms rather than to hasten death. The patient or family should agree with plans for palliative sedation. The attending physician needs to explain to them; developed myoclonus. After other approaches proved ineffective; ethical; Extramural Research Support; Intractable/therapyPalliative Care Physician-Patient Relations Research Support; N.I.H.; Non-U.S. Gov't Research Support; P.H.S.Terminal Care Unconsciousness%X Despite skilled palliative care; palliative sedation was an option of last resort. The doctrine of double effect; permits physicians to provide high doses of opioids and sedatives to relieve suffering; provided that the intention is not to cause the patient's death and that certain other conditions are met. Such high doses are permissible even if the risk of hastening death is foreseen. Because intention plays a key role in this doctrine; receiving high doses of opioids administered to relieve pain; some dying patients experience distressing symptoms that cannot be adequately relieved. A patient with metastatic breast cancer; the details of care and the justification for palliative sedation. Because cases involving palliative sedation are emotionally stressful; the patient; the traditional justification for palliative sedation
2005
Lo B; Rubenfeld G
Jama
2005
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Journal Article
<a href="http://doi.org/10.1001/jama.294.14.1810" target="_blank" rel="noreferrer">10.1001/jama.294.14.1810</a>
Beyond advance directives: importance of communication skills at the end of life
Communication; U.S. Gov't; PedPal Lit; Extramural Research Support; N.I.H.; Non-U.S. Gov't Research Support; Advance Directives Colonic Neoplasms/secondary/therapy; Decision Making Humans Interprofessional Relations Liver Neoplasms/secondary/therapy Male Middle Aged Palliative Care Pancreatic Neoplasms/pathology/therapy; Non-P.H.S. Research Support; P.H.S.Terminal Care; Physician-Patient Relations Research Support
Patients and their families struggle with myriad choices concerning medical treatments that frequently precede death. Advance directives have been proposed as a tool to facilitate end-of-life decision making, yet frequently fail to achieve this goal. In the context of the case of a man with metastatic cancer for whom an advance directive was unable to prevent a traumatic death, I review the challenges in creating and implementing advance directives, discuss factors that can affect clear decision making; including trust, uncertainty, emotion, hope, and the presence of multiple medical providers; and offer practical suggestions for physicians. Advance care planning remains a useful tool for approaching conversations with patients about the end of life. However, such planning should occur within a framework that emphasizes responding to patient and family emotions and focuses more on goals for care and less on specific treatments.
2005
Tulsky JA
Jama
2005
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Journal Article
<a href="http://doi.org/10.1001/jama.294.3.359" target="_blank" rel="noreferrer">10.1001/jama.294.3.359</a>
First documented rhythm and clinical outcome from in-hospital cardiac arrest among children and adults
Child; Female; Hospitalization; Humans; Male; Adult; Hospital Mortality; Prospective Studies; Aged; Middle Aged; Survival Analysis; adolescent; Preschool; 80 and over; infant; cardiopulmonary resuscitation; Heart Arrest/mortality/physiopathology/therapy; Tachycardia; Ventricular Fibrillation/physiopathology; Ventricular/physiopathology
CONTEXT: Cardiac arrests in adults are often due to ventricular fibrillation (VF) or pulseless ventricular tachycardia (VT), which are associated with better outcomes than asystole or pulseless electrical activity (PEA). Cardiac arrests in children are typically asystole or PEA. OBJECTIVE: To test the hypothesis that children have relatively fewer in-hospital cardiac arrests associated with VF or pulseless VT compared with adults and, therefore, worse survival outcomes. DESIGN, SETTING, AND PATIENTS: A prospective observational study from a multicenter registry (National Registry of Cardiopulmonary Resuscitation) of cardiac arrests in 253 US and Canadian hospitals between January 1, 2000, and March 30, 2004. A total of 36,902 adults (> or =18 years) and 880 children (<18 years) with pulseless cardiac arrests requiring chest compressions, defibrillation, or both were assessed. Cardiac arrests occurring in the delivery department, neonatal intensive care unit, and in the out-of-hospital setting were excluded. MAIN OUTCOME MEASURE: Survival to hospital discharge. RESULTS: The rate of survival to hospital discharge following pulseless cardiac arrest was higher in children than adults (27% [236/880] vs 18% [6485/36,902]; adjusted odds ratio [OR], 2.29; 95% confidence interval [CI], 1.95-2.68). Of these survivors, 65% (154/236) of children and 73% (4737/6485) of adults had good neurological outcome. The prevalence of VF or pulseless VT as the first documented pulseless rhythm was 14% (120/880) in children and 23% (8361/36,902) in adults (OR, 0.54; 95% CI, 0.44-0.65; P<.001). The prevalence of asystole was 40% (350) in children and 35% (13 024) in adults (OR, 1.20; 95% CI, 1.10-1.40; P = .006), whereas the prevalence of PEA was 24% (213) in children and 32% (11,963) in adults (OR, 0.67; 95% CI, 0.57-0.78; P<.001). After adjustment for differences in preexisting conditions, interventions in place at time of arrest, witnessed and/or monitored status, time to defibrillation of VF or pulseless VT, intensive care unit location of arrest, and duration of cardiopulmonary resuscitation, only first documented pulseless arrest rhythm remained significantly associated with differential survival to discharge (24% [135/563] in children vs 11% [2719/24,987] in adults with asystole and PEA; adjusted OR, 2.73; 95% CI, 2.23-3.32). CONCLUSIONS: In this multicenter registry of in-hospital cardiac arrest, the first documented pulseless arrest rhythm was typically asystole or PEA in both children and adults. Because of better survival after asystole and PEA, children had better outcomes than adults despite fewer cardiac arrests due to VF or pulseless VT.
2006
Nadkarni VM; Larkin GL; Peberdy MA; Carey SM; Kaye W; Mancini ME; Nichol G; Lane-Truitt T; Potts J; Ornato JP; Berg RA; National Registry of Cardiopulmonary Resuscitation Investigators
Jama
2006
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Journal Article
<a href="http://doi.org/10.1001/jama.295.1.50" target="_blank" rel="noreferrer">10.1001/jama.295.1.50</a>
Clinical and MRI correlates of cerebral palsy: the European Cerebral Palsy Study
Child; Cross-Sectional Studies; Female; Humans; infant; Male; Pregnancy; Pregnancy Complications; Risk Factors; Magnetic Resonance Imaging; Preschool; infant; Newborn; Premature; Brain/pathology; Cerebral Palsy/epidemiology/etiology/physiopathology; Delivery; Infectious; Multiple; Obstetric
CONTEXT: Magnetic resonance imaging (MRI) findings have been reported for specific clinical cerebral palsy (CP) subgroups or lesion types but not in a large population of children with all CP subtypes. Further information about the causes of CP could help identify preventive strategies. OBJECTIVE: To investigate the correlates of CP in a population sample and compare clinical findings with information available from MRI brain studies. DESIGN AND SETTING: Cross-sectional, population-based investigative study conducted in 8 European study centers (North West London and North East London, England; Edinburgh, Scotland; Lisbon, Portugal; Dublin, Ireland; Stockholm, Sweden; Tubingen, Germany; and Helsinki, Finland). PARTICIPANTS: Five hundred eighty-five children with CP were identified who had been born between 1996 and 1999; 431 children were clinically assessed and 351 had a brain MRI scan. MAIN OUTCOME MEASURES: Standardized clinical examination results, parental questionnaire responses, MRI results, and obstetric, genetic, and metabolic data from medical records. RESULTS: Important findings include the high rate of infections reported by mothers during pregnancy (n = 158 [39.5%]). In addition, 235 children (54%) were born at term while 47 children (10.9%) were very preterm (<28 weeks). A high rate of twins was found, with 51 children (12%) known to be from a multiple pregnancy. Clinically, 26.2% of children had hemiplegia, 34.4% had diplegia, 18.6% had quadriplegia, 14.4% had dyskinesia, 3.9% had ataxia, and 2.6% had other types of CP. Brain MRI scans showed that white-matter damage of immaturity, including periventricular leukomalacia (PVL), was the most common finding (42.5%), followed by basal ganglia lesions (12.8%), cortical/subcortical lesions (9.4%), malformations (9.1%), focal infarcts (7.4%), and miscellaneous lesions (7.1%). Only 11.7% of these children had normal MRI findings. There were good correlations between the MRI and clinical findings. CONCLUSIONS: These MRI findings suggest that obstetric mishaps might have occurred in a small proportion of children with CP. A systematic approach to identifying and treating maternal infections needs to be developed. Multiple pregnancies should be monitored closely, and the causes of infant stroke need to be investigated further so preventive strategies can be formulated. All children with CP should have an MRI scan to provide information on the timing and extent of the lesion.
2006
Bax M; Tydeman C; Flodmark O
Jama
2006
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Journal Article
<a href="http://doi.org/10.1001/jama.296.13.1602" target="_blank" rel="noreferrer">10.1001/jama.296.13.1602</a>
Complexity of the cerebral palsy syndromes: toward a developmental neuroscience approach
Child; Humans; Magnetic Resonance Imaging; Preschool; Brain/pathology; Cerebral Palsy/physiopathology
2006
Msall ME
Jama
2006
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Journal Article
<a href="http://doi.org/10.1001/jama.296.13.1650" target="_blank" rel="noreferrer">10.1001/jama.296.13.1650</a>
Patterns of functional decline at the end of life
Female; Humans; Male; Terminally Ill; Cohort Studies; Interviews as Topic; Aged; Death; Activities of Daily Living; Frail Elderly; Epidemiologic Methods; Multiple Organ Failure/physiopathology; Neoplasms/physiopathology; Sudden
CONTEXT: Clinicians have observed various patterns of functional decline at the end of life, but few empirical data have tested these patterns in large populations. OBJECTIVE: To determine if functional decline differs among 4 types of illness trajectories: sudden death, cancer death, death from organ failure, and frailty. DESIGN, SETTING, AND PARTICIPANTS: Cohort analysis of data from 4 US regions in the prospective, longitudinal Established Populations for Epidemiologic Studies of the Elderly (EPESE) study. Of the 14 456 participants aged 65 years or older who provided interviews at baseline (1981-1987), 4871 died during the first 6 years of follow-up; 4190 (86%) of these provided interviews within 1 year before dying. These decedents were evenly distributed in 12 cohorts based on the number of months between the final interview and death. MAIN OUTCOME MEASURES: Self- or proxy-reported physical function (performance of 7 activities of daily living [ADLs]) within 1 year prior to death; predicted ADL dependency prior to death. RESULTS: Mean function declined across the 12 cohorts, simulating individual decline in the final year of life. Sudden death decedents were highly functional even in the last month before death (mean [95% confidence interval [CI]] numbers of ADL dependencies: 0.69 [0.19-1.19] at 12 months before death vs 1.22 [0.59-1.85] at the final month of life, P =.20); cancer decedents were highly functional early in their final year but markedly more disabled 3 months prior to death (0.77 [0.30-1.24] vs 4.09 [3.37-4.81], P<.001); organ failure decedents experienced a fluctuating pattern of decline, with substantially poorer function during the last 3 months before death (2.10 [1.49-2.70] vs 3.66 [2.94-4.38], P<.001); and frail decedents were relatively more disabled in the final year and especially dependent during the last month (2.92 [2.24-3.60] vs 5.84 [5.33-6.35], P<.001). After controlling for age, sex, race, education, marital status, interval between final interview and death, and other demographic differences, frail decedents were more than 8 times more likely than sudden death decedents to be ADL dependent (OR, 8.32 [95% CI, 6.46-10.73); cancer decedents, one and a half times more likely (OR, 1.57 [95% CI, 1.25-1.96]); and organ failure decedents, 3 times more likely (OR, 3.00 [95% CI, 2.39-3.77]). CONCLUSIONS: Trajectories of functional decline at the end of life are quite variable. Differentiating among expected trajectories and related needs would help shape tailored strategies and better programs of care prior to death.
2003
Lunney JR; Lynn J; Foley DJ; Lipson S; Guralnik JM
Jama
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/10.1001/jama.289.18.2387" target="_blank" rel="noreferrer">10.1001/jama.289.18.2387</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>
Problematic variation in local institutional review of a multicenter genetic epidemiology study
Humans; United States; Cystic Fibrosis; Empirical Approach; Ethics Committees; Biomedical and Behavioral Research; Epidemiologic Measurements; Epidemiologic Research Design; Epidemiology; Genetic Research/ethics; Genetics and Reproduction; Molecular/ethics/standards; Multi-site Ethics; Multicenter Studies as Topic/ethics/standards; Research/ethics/standards
CONTEXT: Sequencing of the human genome provides an immense resource for studies correlating DNA variation and epidemiology. However, appropriately powered genetic epidemiology studies often require recruitment from multiple sites. OBJECTIVES: To document the burden imposed by review of multicenter studies and to determine the variability among local institutional review boards (IRBs) in the approval of a multicenter genetic epidemiology study. DESIGN: A PubMed search was performed to determine the frequency of citations of multicenter studies by 5-year intervals from 1974 through 2002. A 7-question survey was sent to all participating study centers to obtain information on frequency of IRB meetings, dates for submission and approval, use/nonuse of a specific consent form, type of review performed, types of consent forms required, preparation time, and number of changes requested by the IRB at each center. Centers also provided a copy of all consent forms they generated and IRB correspondence regarding the study. SETTING AND PARTICIPANTS: Thirty-one of 42 cystic fibrosis care centers in this single US multicenter genetic epidemiology study of cystic fibrosis replied, yielding a 74% response rate. MAIN OUTCOME MEASURES: Frequency of published research studies and consistency among IRBs. RESULTS: The number of all published single-center studies has increased 1.3-fold since 1985, while the number of published epidemiology and genetic epidemiology multicenter studies increased by 8- and 9-fold, respectively, during this same period. Evaluation of the risk of the same genetic epidemiology study by 31 IRBs ranged from minimal to high, resulting in 7 expedited reviews (23%) and 24 full reviews (77%). The number of consents required by the IRBs ranged from 1 to 4; 15 IRBs (48%) required 2 or more consents, while 10 (32%) did not require assent for children. The most common concern (52%) of IRBs pertained to the genetic aspects of the study. CONCLUSIONS: Review of a protocol for a multicenter genetic epidemiology study by local IRBs was highly variable. Lack of uniformity in the review process creates uneven human subjects protection and incurs considerable inefficiency. The need for reform, such as the proposed centralized review, is underscored by the ever increasing rate of genetic discoveries facilitated by the Human Genome Project and the unprecedented opportunity to assess the relevance of genetic variation to public health.
2003
McWilliams R; Hoover-Fong JE; Hamosh A; Beck S; Beaty T; Cutting G
Jama
2003
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Journal Article
<a href="http://doi.org/10.1001/jama.290.3.360" target="_blank" rel="noreferrer">10.1001/jama.290.3.360</a>
Caring for the child with cancer at the close of life: "there are people who make it, and I'm hoping I'm one of them"
Child; Humans; Palliative Care; Terminal Care; Physician-Patient Relations; Family; Attitude to Death; Communication; Non-U.S. Gov't; Research Support; caregivers; Neoplasms/therapy
Approximately 25% of children with cancer die of their disease. Early in the course of a patient's illness, it is often impossible to determine whether the disease will be cured with cancer-directed treatment. When potentially curative therapy is no longer an option, the patient, family, and oncology team face enormous medical, psychological, and spiritual challenges. Optimal palliative care requires willingness on the part of the physician and caregiver team to engage the patient and family in discussions of their hopes and fears and to provide solace and support for emotional and physical pain. Using the comments of a child in the terminal phase of acute leukemia, his mother, and his physician, we describe opportunities and important lessons often revealed only when families and their caregivers face the end of a child's life. A broad-minded assessment of the patient's and family's physical, emotional, and spiritual needs and clarification of realistic goals and hopes not only improves the clinical care that the patient receives but also contributes to the sense of satisfaction and meaning that the physician can gain from the experience of caring for children at the end of life.
2004
Hurwitz CA; Duncan J; Wolfe J
Jama
2004
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Journal Article
<a href="http://doi.org/10.1001/jama.292.17.2141" target="_blank" rel="noreferrer">10.1001/jama.292.17.2141</a>
Complexities in prognostication in advanced cancer: "to help them live their lives the way they want to"
Female; Physician-Patient Relations; Prognosis; Aged; Patient Participation; Survival Analysis; Antineoplastic Agents; 80 and over; Non-U.S. Gov't; P.H.S.; U.S. Gov't; algorithms; Human; Truth Disclosure; Support; Adenocarcinoma/drug therapy/secondary; Hormonal/therapeutic use; Skin Neoplasms/drug therapy/secondary; Stomach Neoplasms/drug therapy/pathology; Tamoxifen/therapeutic use
Predicting survival and disclosing the prediction to patients with advanced disease, particularly cancer, is among the most difficult tasks that physicians face. With the de-emphasis of prognosis in favor of diagnosis and therapeutics in the medical literature, physicians may have difficulty finding the survival information they need to make appropriate estimates of survival for patients who develop cancer. Quite separate from the challenge of estimating survival accurately, physicians may also find the process of disclosing the prognosis to their patients difficult. Using the vignette of a real patient with advanced cancer who far outlived her physician's prognostic estimate, we discuss clinical issues related to the science of prognosis in advanced cancer and the art of its disclosure.
2003
Lamont EB; Christakis NA
Jama
2003
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Journal Article
Use of patient-controlled analgesia for management of acute pain
Humans; Acute Disease; Pain/drug therapy; Analgesics/administration & dosage/adverse effects; Infusion Pumps; Infusions; Injections; Intravenous; Self Administration/adverse effects/instrumentation
Patient-controlled analgesia (PCA) provides improved titration of analgesic drugs, thereby minimizing individual pharmacokinetic and pharmacodynamic differences. Patient-controlled analgesia decreases patient anxiety resulting from delays in receiving pain-relieving medication and from the slow onset of analgesic action when these drugs are administered either intramuscularly or in the extradural space. With PCA therapy, patients are reportedly able to maintain a near optimal state of analgesia with minimal sedation and few side effects. The potential for overdose can be minimized if small bolus doses are used with a mandatory lockout interval between successive doses. Finally, studies of the cost-effectiveness of PCA therapy are important if this therapeutic approach is to achieve more widespread acceptance.
1988
White PF
Jama
1988
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Journal Article
<a href="http://doi.org/10.1001/jama.259.2.243" target="_blank" rel="noreferrer">10.1001/jama.259.2.243</a>
The Care of the Patient
Physician-Patient Relations; Philosophy; Medical
1927
Peabody FW
Jama
1927
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Journal Article
<a href="http://doi.org/10.1080/07448481.1985.9939607" target="_blank" rel="noreferrer">10.1080/07448481.1985.9939607</a>
'Do Not Resuscitate' Orders: Incidence and Implications in a Medical Intensive Care Unit
"Do not resuscitate" (DNR) decisions were examined in a medical intensive care unit (MICU) of a 1,000-bed hospital. Seventy-one (14%) of 506 study patients were designated DNR; nine survived hospitalization. Severity of illness, age, and prior health were predictive of DNR orders; race and socioeconomic factors were not. The DNR patients consumed more resources, both before and after DNR orders. Interventions started before DNR designation were continued in at least 76% of patients. Documented justifications of DNR decisions included poor prognosis (59%), poor quality of life (24%), and patients' wishes (15%). There were no written justifications for the DNR decisions in 30 cases (42%). Although willingness to write DNR orders in an MICU and continued active treatment of DNR patients are both reassuring in a general sense, they raise questions about the consistency of treatment plans and goals for individual patients.(JAMA 1985;253:54-57)
Youngner SJ; Lewandowski W; McClish DK; Juknialis BW; Coulton C; Bartlett ET
Jama
1985
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Journal Article
<a href="http://doi.org/10.1001/jama.1985.03350250062023" target="_blank" rel="noreferrer noopener">10.1001/jama.1985.03350250062023</a>
Do-not-resuscitate decisions in a community hospital: Incidence, implications, and outcomes
DNAR Outcomes
To investigate intensity of care after do-not-resuscitate (DNR) designation, the implications of DNR decisions were analyzed in a 450-bed community hospital. All 333 patients who received written DNR orders in a six-month period were studied. These 333 patients constituted 3% of all discharges, but 70% of patients who died in hospital. Treatment goals for care provided after DNR designation were not documented in 60% of the patients' medical records. Intensity of care, as measured by hospital charges, decreased significantly after DNR designation. Although many types of care were provided after DNR, most were noninvasive. These findings suggest that although many DNR policies consider DNR status fully compatible with aggressive care, in actual clinical practice the DNR order usually leads to less intensive care. Results further suggest that the DNR decision should properly become part of a comprehensive patient care plan individualizing treatment goals for patients.(JAMA 1986;256:1164-1169)
1986-09
Lipton H
Jama
1986
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Journal Article
<a href="http://doi.org/10.1001/jama.1986.03380090104026" target="_blank" rel="noreferrer">10.1001/jama.1986.03380090104026</a>
Comfort care for terminally ill patients. The appropriate use of nutrition and hydration
Female; Humans; Male; Withholding Treatment; Prospective Studies; Aged; Middle Aged; New York; Risk Assessment; Fluid Therapy; Parenteral Nutrition; quality of life; 80 and over; Empirical Approach; Death and Euthanasia; Hunger; Nursing Homes/standards; Nutrition; NY); Palliative Care/psychology; Psychological; St. John's Home (Rochester; Stress; Terminal Care/methods/psychology/standards; Thirst; Xerostomia/therapy
OBJECTIVE--To determine the frequency of symptoms of hunger and thirst in a group of terminally ill patients and determine whether these symptoms could be palliated without forced feeding, forced hydration, or parenteral alimentation. DESIGN--Prospective evaluation of consecutively admitted terminally ill patients treated in a comfort care unit. SETTING--Ten-bed comfort care unit in a 471-bed long-term care facility. PARTICIPANTS--Mentally aware, competent patients with terminal illnesses monitored from time of admission to time of death while residing in the comfort care unit. MAIN OUTCOME MEASURES--Symptoms of hunger, thirst, and dry mouth were recorded, and the amounts and types of food and fluids necessary to relieve these symptoms were documented. The subjective level of comfort was assessed longitudinally in all patients. RESULTS--Of the 32 patients monitored during the 12 months of study, 20 patients (63%) never experienced any hunger, while 11 patients (34%) had symptoms only initially. Similarly, 20 patients (62%) experienced either no thirst or thirst only initially during their terminal illness. In all patients, symptoms of hunger, thirst, and dry mouth could be alleviated, usually with small amounts of food, fluids, and/or by the application of ice chips and lubrication to the lips. Comfort care included use of narcotics for relief of pain or shortness of breath in 94% of patients. CONCLUSIONS--In this series, patients terminally ill with cancer generally did not experience hunger and those who did needed only small amounts of food for alleviation. Complaints of thirst and dry mouth were relieved with mouth care and sips of liquids far less than that needed to prevent dehydration. Food and fluid administration beyond the specific requests of patients may play a minimal role in providing comfort to terminally ill patients.
1994
McCann RM; Hall WJ; Groth-Juncker A
Jama
1994
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Journal Article
<a href="http://doi.org/10.1001/jama.1994.03520160047041" target="_blank" rel="noreferrer">10.1001/jama.1994.03520160047041</a>
Niemann-Pick disease type C: From bench to bedside.
Female; Humans; infant; Male; Adult; Disease Progression; Longitudinal Studies; Genetic Counseling; Newborn; Age of Onset; Cholesterol/metabolism; Esterification; Fibroblasts/pathology; Foam Cells/pathology; Histiocytes/pathology; Intelligence Tests; Jaundice; Neonatal/etiology; Nervous System Diseases/etiology; Niemann-Pick Diseases/diagnosis/genetics/pathology/physiopathology/therapy; Splenomegaly/etiology
1996
Schiffmann R
Jama
1996
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Journal Article
<a href="http://doi.org/10.1001/jama.1996.03540070057031" target="_blank" rel="noreferrer">10.1001/jama.1996.03540070057031</a>
Protecting adolescents from harm. Findings from the National Longitudinal Study on Adolescent Health
Cross-Sectional Studies; Female; Humans; Male; Pregnancy; Longitudinal Studies; Mental Health; Multivariate Analysis; Adolescent Behavior; Regression Analysis; Health Behavior; adolescent; Adolescent Transitions; Risk-Taking; Health Surveys; Pregnancy in Adolescence; Sexuality; Substance-Related Disorders/epidemiology; United States/epidemiology; Violence/statistics & numerical data
CONTEXT: The main threats to adolescents' health are the risk behaviors they choose. How their social context shapes their behaviors is poorly understood. OBJECTIVE: To identify risk and protective factors at the family, school, and individual levels as they relate to 4 domains of adolescent health and morbidity: emotional health, violence, substance use, and sexuality. DESIGN: Cross-sectional analysis of interview data from the National Longitudinal Study of Adolescent Health. PARTICIPANTS: A total of 12118 adolescents in grades 7 through 12 drawn from an initial national school survey of 90118 adolescents from 80 high schools plus their feeder middle schools. SETTING: The interview was completed in the subject's home. MAIN OUTCOME MEASURES: Eight areas were assessed: emotional distress; suicidal thoughts and behaviors; violence; use of 3 substances (cigarettes, alcohol, marijuana); and 2 types of sexual behaviors (age of sexual debut and pregnancy history). Independent variables included measures of family context, school context, and individual characteristics. RESULTS: Parent-family connectedness and perceived school connectedness were protective against every health risk behavior measure except history of pregnancy. Conversely, ease of access to guns at home was associated with suicidality (grades 9-12: P
1997
Resnick MD; Bearman PS; Blum RW; Bauman KE; Harris KM; Jones J; Tabor J; Beuhring T; Sieving RE; Shew M; Ireland M; Bearinger LH; Udry JR
Jama
1997
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Journal Article
<a href="http://doi.org/10.1001/jama.1997.03550100049038" target="_blank" rel="noreferrer">10.1001/jama.1997.03550100049038</a>
Influence of physician confidentiality assurances on adolescents' willingness to disclose information and seek future health care. A randomized controlled trial
Female; Humans; Male; Physician-Patient Relations; Truth Disclosure; California; Analysis of Variance; Disclosure; Regression Analysis; adolescent; Empirical Approach; Professional Patient Relationship; Adolescent Transitions; Adolescent Health Services/utilization; Confidentiality
CONTEXT: Adolescents' concerns about privacy in clinical settings decrease their willingness to seek health care for sensitive problems and may inhibit their communication with physicians. OBJECTIVE: To investigate the influence of physicians' assurances of confidentiality on adolescents' willingness to disclose information and seek future health care. DESIGN: Randomized controlled trial. SETTING: Three suburban public high schools in California. PARTICIPANTS: The 562 participating adolescents represented 92% of students in mandatory classes. INTERVENTION: After random assignment to 1 of 3 groups, the adolescents listened to a standardized audiotape depiction of an office visit during which they heard a physician who assured unconditional confidentiality, a physician who assured conditional confidentiality, or a physician who did not mention confidentiality. MAIN OUTCOME MEASURES: Adolescents' willingness to disclose general information, willingness to disclose information about sensitive topics, intended honesty, and likelihood of return visits to the physician depicted in the scenario were assessed by anonymous written questionnaire. RESULTS: Assurances of confidentiality increased the number of adolescents willing to disclose sensitive information about sexuality, substance use, and mental health from 39% (68/175) to 46.5% (178/383) (beta=.10, P=.02) and increased the number willing to seek future health care from 53% (93/175) to 67% (259/386) (beta=.17, P
1997
Ford CA; Millstein SG; Halpern-Felsher BL; Irwin CE
Jama
1997
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Journal Article
<a href="http://doi.org/10.1001/jama.1997.03550120089044" target="_blank" rel="noreferrer">10.1001/jama.1997.03550120089044</a>
Confidentiality in health care. A survey of knowledge, perceptions, and attitudes among high school students
Female; Humans; Male; Questionnaires; Massachusetts; Health Behavior; Emergency Service; Practice; adolescent; Hospital/utilization; Empirical Approach; Professional Patient Relationship; Attitudes; Adolescent Transitions; Patient Acceptance of Health Care/statistics & numerical data; Health Knowledge; Adolescent Health Services/utilization; Confidentiality; Community Health Centers/utilization; Physicians' Offices/utilization; School Health Services/utilization; Students
OBJECTIVE--To assess adolescent knowledge, perceptions, and attitudes about health care confidentiality. DESIGN--Anonymous self-report survey with 64 items addressing confidentiality issues in health care. SETTING--Rural, suburban, and urban high schools in central Massachusetts. PARTICIPANTS--Students in ninth through 12th grades from three schools. RESULTS--A total of 1295 students (87%) completed the survey: 58% had health concerns that they wished to keep private from their parents, and 69% from friends and classmates; 25% reported that they would forgo health care in some situations if their parents might find out. There were differences in response by gender, race, and school. About one third were aware of a right to confidentiality for specific health issues. Of those with a regular source of care, 86% would go to their regular physician for a physical illness, while only 57% would go there for questions about pregnancy, the acquired immunodeficiency syndrome, or substance abuse that they wished to keep private. Sixty-eight percent had concerns about the privacy of a school health center. CONCLUSIONS--A majority of adolescents have concerns they wish to keep confidential and a striking percentage report they would not seek health services because of these concerns. Interventions to address confidentiality issues are thus crucial to effective adolescent health care.
1993
Cheng TL; Savageau JA; Sattler AL; DeWitt TG
Jama
1993
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Journal Article
<a href="http://doi.org/10.1001/jama.269.11.1404" target="_blank" rel="noreferrer">10.1001/jama.269.11.1404</a>
Limitations and withdrawals of medical intervention in pediatric critical care
Child; Female; Humans; Male; Survival Rate; United States; Intensive Care Units; Withholding Treatment; Hospital Mortality; Resuscitation Orders; Patient Selection; Analysis of Variance; Outcome and Process Assessment (Health Care); Preschool; Empirical Approach; Death and Euthanasia; infant; ICU Decision Making; Intervention; Interventions; Life Support Care/utilization; Pediatric/standards/statistics & numerical data
OBJECTIVE--To investigate the use and implementation in pediatric intensive care units (PICUs) of three levels of restriction of medical intervention: do not resuscitate (DNR), additional limitations of medical interventions beyond DNR, and withdrawal of care. DESIGN--Consecutive patients admitted between December 1989 and January 1992. SETTING--A total of 16 PICUs randomly selected to represent variability in size, teaching status, and presence or absence of a pediatric intensivist and unit coordination. MAIN OUTCOME MEASURES--Profiles of children undergoing restrictions of medical interventions including the influence of chronic disease, the justifications for restrictions, and description of implementation practices. PATIENTS--All pediatric admissions undergoing restrictions (n = 119) drawn from 5415 consecutive PICU admissions. RESULTS--A total of 94 (79%) of the restriction patients died during the PICU course, representing 38% of all deaths. A total of 73 restrictions (61%) resulted from acute disease, most involving the central nervous system or respiratory system. Restrictions were evenly divided between DNR (39%), additional limitations of medical intervention beyond DNR (27%), and withdrawals of medical intervention (34%). Survival decreased with increasing levels of restriction from 35% of DNR patients to 9% of patients with additional limitations and 2% of withdrawal patients. Imminent death was cited as the justification for restrictions in 70% of cases, no relational potential was cited in 22%, and excessive burden was cited in 8%. CONCLUSIONS--Restrictions of medical intervention were used in all PICUs surveyed. Although severe chronic disease was common among restriction patients, acute disease was the predominant event precipitating placement of restrictions. Imminent death, not quality of life or excessive burden, was the most common justification.
1994
Levetown M; Pollack MM; Cuerdon TT; Ruttimann UE; Glover JJ
Jama
1994
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Journal Article
<a href="http://doi.org/10.1001/jama.272.16.1271" target="_blank" rel="noreferrer">10.1001/jama.272.16.1271</a>
Child health services research. Challenges and opportunities
Miller 2009 BMC HSR Refs
1997
Forrest CB; Simpson L; Clancy C
Jama
1997
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Journal Article
<a href="http://doi.org/10.1001/jama.277.22.1787" target="_blank" rel="noreferrer">10.1001/jama.277.22.1787</a>
Outcome at age 4 years in offspring of women with maternal phenylketonuria: the Maternal PKU Collaborative Study
Child; Female; Humans; Male; Pregnancy; Logistic Models; Pregnancy Outcome; Longitudinal Studies; Cognition; Developmental Disabilities; Child Behavior; Preschool; AIM; IM; Developmental Disabilities/di [Diagnosis]; Developmental Disabilities/et [Etiology]; Phenylketonurias/dh [Diet Therapy]; Phenylketonurias/pp [Physiopathology]; Pregnancy Complications/dh [Diet Therapy]; Psychological Tests
CONTEXT: Untreated maternal phenylketonuria (PKU) increases risk for developmental problems in offspring. The extent to which this risk is reduced by maternal dietary therapy at various stages of pregnancy is not known. OBJECTIVE: To determine whether dietary treatment during pregnancy of women with PKU affects developmental outcomes of offspring. DESIGN: The Maternal PKU Collaborative Study, an ongoing, longitudinal prospective study begun in 1984. SETTING: A total of 78 metabolic clinics and obstetrical offices in the United States, Canada, and Germany. PARTICIPANTS: A total of 253 children of women with PKU (n = 149), with untreated mild hyperphenylalaninemia (n = 33), or without known metabolic problems (comparison group; n = 71) were followed up to age 4 years. INTERVENTION: Women with PKU were offered a low-phenylalanine diet prior to or during pregnancy with the aim of maintaining metabolic control (plasma phenylalanine < or =10 mg/dL [< or =605 micromol/L]). Women with mild hyperphenylalaninemia, who had plasma phenylalanine levels of no more than 10 mg/dL (605 micromol/L) on a normal diet, were not treated. MAIN OUTCOME MEASURES: Children's scores on cognitive and behavioral assessments (McCarthy Scales of Children's Abilities, Test of Language Development, Achenbach Child Behavior Checklist, Vineland Adaptive Behavior Scales, and Home Observation for Measurement of the Environment), compared by maternal metabolic status at 0 to 10 weeks', 10 to 20 weeks', and after 20 weeks' gestation. RESULTS: Scores on the McCarthy General Cognitive Index decreased as weeks to metabolic control increased (r = -0.58; P<.001). Offspring of women who had metabolic control prior to pregnancy had a mean (SD) score of 99 (13). Forty-seven percent of offspring whose mothers did not have metabolic control by 20 weeks' gestation had a General Cognitive Index score 2 SDs below the norm. Overall, 30% of children born to mothers with PKU had social and behavioral problems. CONCLUSIONS: Our data suggest that delayed development in offspring of women with PKU is associated with lack of maternal metabolic control prior to or early in pregnancy. Treatment at any time during pregnancy may reduce the severity of delay.
2000
Waisbren SE; Hanley W; Levy HL; Shifrin H; Allred E; Azen C; Chang PN; Cipcic-Schmidt S; de la Cruz F; Hall R; Matalon R; Nanson J; Rouse B; Trefz F; Koch R
Jama
2000
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Journal Article
<a href="http://doi.org/10.1001/jama.283.6.756" target="_blank" rel="noreferrer">10.1001/jama.283.6.756</a>
Hospital care of patients with dementia.
Hospitalization; Humans; Palliative Care; Advance Directives; Prognosis; Acute Disease; Double Effect Principle; advance care planning; Dementia/co [Complications]; Dementia/mo [Mortality]; Hip Fractures/co [Complications]; Hip Fractures/th [Therapy]; Patient Care; Pneumonia/co [Complications]; Pneumonia/th [Therapy]; DNAR
2000
Riesenberg D
Jama
2000
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/10.1001/jama.284.1.87" target="_blank" rel="noreferrer">10.1001/jama.284.1.87</a>
Learning to care for people with chronic illness facing the end of life
United States; Health Services Accessibility; Health Services Research; Quality of Health Care; Professional Patient Relationship; Death and Euthanasia; Palliative Care/economics/standards/trends; Policy Making; RDF Project; Terminal Care/economics/standards/trends
2000
Lynn J
Jama
2000
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Journal Article
<a href="http://doi.org/10.1001/jama.284.19.2508" target="_blank" rel="noreferrer">10.1001/jama.284.19.2508</a>
A controlled trial to improve care for seriously lli hospitalized patients: The study to understand prognoses and preferences for outcomes and risks of treatments (support)
DNAR Outcomes
Objectives. —To improve end-of-life decision making and reduce the frequency of a mechanically supported, painful, and prolonged process of dying.Design. —A 2-year prospective observational study (phase I) with 4301 patients followed by a 2-year controlled clinical trial (phase II) with 4804 patients and their physicians randomized by specialty group to the intervention group (n=2652) or control group (n=2152).Setting. —Five teaching hospitals in the United States.Patients. —A total of 9105 adults hospitalized with one or more of nine life-threatening diagnoses; an overall 6-month mortality rate of 47%.Intervention. —Physicians in the intervention group received estimates of the likelihood of 6-month survival for every day up to 6 months, outcomes of cardiopulmonary resuscitation (CPR), and functional disability at 2 months. A specially trained nurse had multiple contacts with the patient, family, physician, and hospital staff to elicit preferences, improve understanding of outcomes, encourage attention to pain control, and facilitate advance care planning and patient-physician communication.Results. —The phase I observation documented shortcomings in communication, frequency of aggressive treatment, and the characteristics of hospital death: only 47% of physicians knew when their patients preferred to avoid CPR; 46% of do-not-resuscitate (DNR) orders were written within 2 days of death; 38% of patients who died spent at least 10 days in an intensive care unit (ICU); and for 50% of conscious patients who died in the hospital, family members reported moderate to severe pain at least half the time. During the phase II intervention, patients experienced no improvement in patient-physician communication (eg, 37% of control patients and 40% of intervention patients discussed CPR preferences) or in the five targeted outcomes, ie, incidence or timing of written DNR orders (adjusted ratio, 1.02; 95% confidence interval [Cl], 0.90 to 1.15), physicians' knowledge of their patients'preferences not to be resuscitated (adjusted ratio, 1.22; 95% Cl, 0.99 to 1.49), number of days spent in an ICU, receiving mechanical ventilation, or comatose before death (adjusted ratio, 0.97; 95% Cl, 0.87 to 1.07), or level of reported pain (adjusted ratio, 1.15; 95% Cl, 1.00 to 1.33). The intervention also did not reduce use of hospital resources (adjusted ratio, 1.05; 95% Cl, 0.99 to 1.12).Conclusions. —The phase I observation of SUPPORT confirmed substantial shortcomings in care for seriously ill hospitalized adults. The phase II intervention failed to improve care or patient outcomes. Enhancing opportunities for more patient-physician communication, although advocated as the major method for improving patient outcomes, may be inadequate to change established practices. To improve the experience of seriously ill and dying patients, greater individual and societal commitment and more proactive and forceful measures may be needed.(JAMA. 1995;274:1591-1598)
1995-11
Connors AF; Jr; Dawson NV; Desbiens NA; et al
Jama
1995
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Journal Article
<a href="http://doi.org/10.1001/jama.1995.03530200027032" target="_blank" rel="noreferrer">10.1001/jama.1995.03530200027032</a>
Understanding of prognosis among parents of children who died of cancer: Impact on treatment goals and integration of palliative care
Child; Female; Humans; Male; Palliative Care; Terminally Ill; Adult; Data Collection; Prognosis; Attitude to Death; Regression Analysis; Empirical Approach; Professional Patient Relationship; Death and Euthanasia; decision making; Parents/psychology; Oncology at EOL; Physicians/psychology; Neoplasms/mortality/therapy
Context Parents' understanding of prognosis or decision making about palliative care for children who die of cancer is largely unknown. However, a more accurate understanding of prognosis could alter treatment goals and expectations and lead to more effective care.Objectives To evaluate parental understanding of prognosis in children who die of cancer and to assess the association of this factor with treatment goals and the palliative care received by children.Design, Setting, and Participants Survey, conducted between September 1997 and August 1998, of 103 parents of children who received treatment at the Dana-Farber Cancer Institute and Children's Hospital, Boston, Mass, and who died of cancer between 1990 and 1997 (72% of those eligible and those located) and 42 pediatric oncologists.Main Outcome Measure Timing of parental understanding that the child had no realistic chance for cure compared with the timing of physician understanding of this prognosis, as documented in the medical record.Results Parents first recognized that the child had no realistic chance for cure a mean (SD) of 106 (150) days before the child's death, while physician recognition occurred earlier at 206 (330) days before death. Among children who died of progressive disease, the group characterized by earlier recognition of this prognosis by both parents and physicians had earlier discussions of hospice care (odds ratio [OR], 1.03; 95% confidence interval [CI], 1.01-1.06; P = .01), better parental ratings of the quality of home care (OR, 3.31; 95% CI, 1.15-9.54; P = .03), earlier institution of a do-not-resuscitate order (OR, 1.03; 95% CI, 1.00-1.06; P = .02), less use of cancer-directed therapy during the last month of life (OR, 2.80; 95% CI, 1.05-7.50; P = .04), and higher likelihood that the goal of cancer-directed therapy identified by both physician and parent was to lessen suffering (OR, 5.17; 95% CI, 1.86-14.4; P = .002 for physician and OR, 6.56; 95% CI, 1.54-27.86; P = .01 for parents).Conclusion Considerable delay exists in parental recognition that children have no realistic chance for cure, but earlier recognition of this prognosis by both physicians and parents is associated with a stronger emphasis on treatment directed at lessening suffering and greater integration of palliative care.
2000-11
Wolfe J; Klar N; Grier HE; et al
Jama
2000
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Journal Article
<a href="http://doi.org/10.1001/jama.284.19.2469" target="_blank" rel="noreferrer">10.1001/jama.284.19.2469</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>
Survival without disability to age 5 years after neonatal caffeine therapy for apnea of prematurity
Child; Female; Humans; infant; Male; Follow-Up Studies; Treatment Outcome; Survival Analysis; Odds Ratio; Child Development; Incidence; Preschool; infant; Newborn; Premature; Apnea/drug therapy; Blindness/epidemiology/etiology/prevention & control; Caffeine/adverse effects/therapeutic use; Central Nervous System Stimulants/adverse effects/therapeutic use; Cerebral Palsy/epidemiology; Cognition Disorders/epidemiology/etiology/prevention & control; Deafness/epidemiology/etiology/prevention & control; Developmental Disabilities/epidemiology/etiology/prevention & control; N2N; Very Low Birth Weight
CONTEXT: Very preterm infants are prone to apnea and have an increased risk of death or disability. Caffeine therapy for apnea of prematurity reduces the rates of cerebral palsy and cognitive delay at 18 months of age. OBJECTIVE: To determine whether neonatal caffeine therapy has lasting benefits or newly apparent risks at early school age. DESIGN, SETTING, AND PARTICIPANTS: Five-year follow-up from 2005 to 2011 in 31 of 35 academic hospitals in Canada, Australia, Europe, and Israel, where 1932 of 2006 participants (96.3%) had been enrolled in the randomized, placebo-controlled Caffeine for Apnea of Prematurity trial between 1999 and 2004. A total of 1640 children (84.9%) with birth weights of 500 to 1250 g had adequate data for the main outcome at 5 years. MAIN OUTCOME MEASURES: Combined outcome of death or survival to 5 years with 1 or more of motor impairment (defined as a Gross Motor Function Classification System level of 3 to 5), cognitive impairment (defined as a Full Scale IQ<70), behavior problems, poor general health, deafness, and blindness. RESULTS: The combined outcome of death or disability was not significantly different for the 833 children assigned to caffeine from that for the 807 children assigned to placebo (21.1% vs 24.8%; odds ratio adjusted for center, 0.82; 95% CI, 0.65-1.03; P = .09). The rates of death, motor impairment, behavior problems, poor general health, deafness, and blindness did not differ significantly between the 2 groups. The incidence of cognitive impairment was lower at 5 years than at 18 months and similar in the 2 groups (4.9% vs 5.1%; odds ratio adjusted for center, 0.97; 95% CI, 0.61-1.55; P = .89). CONCLUSION: Neonatal caffeine therapy was no longer associated with a significantly improved rate of survival without disability in children with very low birth weights who were assessed at 5 years.
Schmidt B; Anderson PJ; Doyle LW; Dewey D; Grunau RE; Asztalos EV; Davis PG; Tin W; Moddemann D; Solimano A; Ohlsson A; Barrington KJ; Roberts RS; Trial Investigators Caffeine for Apnea of Prematurity (CAP)
Jama
2012
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Journal Article
<a href="http://doi.org/10.1001/jama.2011.2024" target="_blank" rel="noreferrer">10.1001/jama.2011.2024</a>
The retreat from advanced care planning
Humans; United States; Advance Directives; Physician-Patient Relations; Patient Protection and Affordable Care Act; Patient-Centered Care; decision making; Advance Care Planning/economics/trends; Centers for Medicare and Medicaid Services (U.S.); Insurance Coverage/legislation & jurisprudence; Journal of Palliative Medicine Briefings; Medicare/economics; Terminal Care/economics/standards
Tinetti ME
Jama
2012
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Journal Article
<a href="http://doi.org/10.1001/jama.2012.229" target="_blank" rel="noreferrer">10.1001/jama.2012.229</a>
The United Kingdom Sets Limits on Experimental Treatments: The Case of Charlie Gard
Health Care Rationing/es [ethics]; Mitochondrial Encephalomyopathies/th [therapy]; Patient Transfer/lj [legislation & Jurisprudence]; State Medicine/lj [legislation & Jurisprudence]; Therapies Investigational/ec [economics]; Evidence-based Medicine; Health Care Rationing/ec [economics]; Health Care Rationing/lj [legislation & Jurisprudence]; Humans; Infant; Male; Mitochondrial Encephalomyopathies/ec [economics]; Palliative Care; Patient Transfer/ec [economics]; State Medicine/ec [economics]; State Medicine/es [ethics]; United Kingdom
Truog RD
Jama
2017
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<a href="http://doi.org/10.1001/jama.2017.10410" target="_blank" rel="noreferrer">10.1001/jama.2017.10410</a>
New Resources For Pediatric Palliative Care
Associations; Palliative Care; Families & Family Life; Pediatrics; Children's Health
End Of Life; Pediatrics
The National Institute of Nursing Research (NINR) has developed pediatric palliative care informational materials for families of children with serious illnesses (http://1.usa.gov/1rHZs45). The fact sheet, family stories, and resource card highlighting support services are designed to assist families of seriously ill pediatric patients with palliative care planning and decision making. Suggestions and insights from families of children with serious illness were taken into consideration when the materials were developed. The materials complement information provided by the NINR’s existing Palliative Care: Conversations Matter campaign, which includes an overview of palliative care services, as well as related tips and resources for clinicians. “Palliative care is often associated with end of life, making it difficult for patients and their families—and even health care providers—to start conversations around the subject,” said NINR Director Patricia A. Grady, RN, PhD, in a statement. We hope these materials will improve patient and family understanding of pediatric palliative care and facilitate discussion with health care teams.”
The fact sheet, resource card, and family stories can be accessed in English and Spanish on the NINR’s Palliative Care: Conversations Matter campaign website
Julie A Jacob
Jama
2016
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doi:10.1001/jama.2016.7255