Effect of hand splints on stereotypic hand behavior of girls with Rett syndrome: a replication study
Humans; Female; Child Preschool; Reproducibility of Results; Splints; Stereotyped Behavior; Hand; Rett Syndrome/rehabilitation; tone and motor problems; Rett syndrome; physical intervention; hand splints; hand wringing
The purposes of this study were to replicate a recent report of the positive effects of hand splinting on the stereotypic hand movement of children with Rett syndrome and to evaluate the generality of these results to a different setting. Two 5-year-old girls diagnosed with early Stage-III Rett syndrome were introduced to hand splints in accordance with the multiple-baseline design used in the Naganuma and Billingsley study. Splint wear ranged from 30 to 50 days for the two subjects. Data were analyzed as a percentage of time and as actual time in minutes. Unlike the previous study, in which a decrease in hand-wringing behavior was noted, neither subject in our study demonstrated a decrease in stereotypic hand behavior or a subsequent increase in independent feeding skills when wearing the splints. There was also no evidence of increased hand wringing following withdrawal of the splints. The differences in ages of the subjects and different functional levels (stages) may have been contributing factors to the conflicting results and should be considered in managing this group of children.
Tuten H; Miedaner J
Physical Therapy
1989
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1093/ptj/69.12.1099" target="_blank" rel="noreferrer noopener">10.1093/ptj/69.12.1099</a>
Respiratory complications of mucopolysaccharide storage disorders
Male; Child; Humans; Adult; Adolescent; Female; Child Preschool; Infant; Retrospective Studies; Sleep Apnea Syndromes/et [Etiology]; Mucopolysaccharidoses/co [Complications]; Respiratory Tract Diseases/et [Etiology]; Airway Obstruction/et [Etiology]; Anesthesia General/ae [Adverse Effects]; Cardiovascular Diseases/et [Etiology]; Intubation Intratracheal/ae [Adverse Effects]; Lung Diseases/et [Etiology]; Lung Diseases/pp [Physiopathology]; Mucopolysaccharidoses/mo [Mortality]; Mucopolysaccharidoses/pp [Physiopathology]; Respiratory Tract Diseases/pp [Physiopathology]; Respiratory Tract Diseases/ra [Radiography]; Spinal Diseases/et [Etiology]; Spinal Diseases/ra [Radiography]; breathing difficulties; MLII; MLIII; MPSI; MPSII; MPSVI; surgical interventions; pharmacologic interventions; tonsillectomy; adenoidectomy; tracheostomy; diuretics; theophylline; digoxin; beta adrenergic blockers; calcium antagonists; respiratory problems
Twenty-one patients with the diagnosis of mucopolysaccharidosis or mucolipidosis and a history of respiratory complaints or thorough respiratory evaluation were studied retrospectively. Anatomic factors affecting respiratory status included: (i) upper airway narrowing by hypertrophied tongue, tonsils, adenoids, and mucous membranes; (ii) lower airway narrowing by glycosaminoglycan deposition within the tracheobronchial mucosa; (iii) decreased thoracic dimensions due to scoliosis and thoracic hyperkyphosis; and (iv) decreased abdominal dimensions due to lumbar hyperlordosis, gibbus formation and hepatosplenomegaly. Cardiac and neurologic involvement, while present, did not play primary roles in the development of respiratory disease. The functional consequences of these findings included increased risk of developing: (i) respiratory tract infections; (ii) airway compromise during or after anesthesia or sedation; (iii) dyspnea on exertion; (iv) obstructive lung disease; (v) obstructive sleep apnea; and (vi) cor pulmonale. A management approach is presented which can reduce the morbidity and mortality experienced by these patients.
Semenza G L; Pyeritz R E
Medicine
1988
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1097/00005792-198807000-00002" target="_blank" rel="noreferrer noopener">10.1097/00005792-198807000-00002</a>
Effect of hand splints on stereotypic hand behavior of three girls with Rett syndrome
Child; Humans; Adolescent; Female; Syndrome; Splints; Stereotyped Behavior; Autistic Disorder; Hand; Intellectual Disability; Neuromuscular Diseases/rehabilitation; tone and motor problems; Rett syndrome; physical intervention; Thumb abduction splints; stereotypic hand behavior; finger-feeding skills; hand splints
The purpose of this multiple baseline study was to examine the effect of bilateral hand splints on the persistent stereotypic hand movements of three adolescent girls with Rett syndrome. Among the most characteristic features of Rett syndrome are stereotypic hand-writing and hand-biting behavior and loss of previously acquired functional hand skills. The hand splints used in this study consisted of cuffs encircling the palm that positioned the subjects' thumbs in abduction. Duration percentages of subjects' stereotypic hand behavior and functional hand use were calculated from five-minute videotaped segments recorded during a finger-feeding condition and a free-time condition. All three subjects demonstrated a decrease in the amount of time spent in stereotypic hand behavior after application of hand splints, and one subject showed an increase in finger-feeding skills while wearing hand splints. Limitations of the study are discussed, and suggestions for clinical application and future research are offered.
Naganuma G M; Billingsley F F
Physical Therapy
1988
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<a href="http://doi.org/10.1093/ptj/68.5.664" target="_blank" rel="noreferrer noopener">10.1093/ptj/68.5.664</a>
Behavior management of feeding disturbances in urea cycle and organic acid disorders
Pediatrics; feeding difficulties; argininosuccinate kyase deficiency; MCM deficiency; ornithine carbamoyltransferase deficiency disease; propionic acidemia; psychological intervention; positive reinforcement; guidance techniques
Hyman S L; Porter C A; Page T J; Iwata B A; Kissel R; Batshaw M L
Journal of Pediatrics
1987
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/s0022-3476(87)80121-x" target="_blank" rel="noreferrer noopener">10.1016/s0022-3476(87)80121-x</a>
Sixty-four patients with Brachmann-de Lange syndrome: a survey
Male; Surveys and Questionnaires; Child; Humans; Female; Psychomotor Performance; Birth Weight; De Lange Syndrome/etiology/genetics/physiopathology; behavioral problems; breathing difficulties; feeding difficulties; De Lange syndrome; trajectory; characteristics; respiratory tract symptoms
We surveyed 64 individuals with the diagnosis of Brachmann-de Lange syndrome (BDLS) to determine the natural course and cause of the disorder. The 64 individuals were ascertained through membership in a national organization, the Cornelia de Lange Syndrome (CDLS) Foundation, comprised of families who have a relative with BDLS. We surveyed 64 families by questionnaire and personally examined 24 of the 64. Our data suggest that lower birth weight correlates with a more severe phenotype, specifically including severe upper limb malformations and greater psychomotor retardation. The lower birth weight group showed a significant excess of females. The miscarriage rate was normal and there were no recurrences reported in the 64 families we surveyed. Major management problems included feeding problems and projectile vomiting, behavioral problems including frequent tantrums, hearing and dental difficulties, and recurrent respiratory tract infections. The oldest, teenaged subjects in our study entered puberty; although pregnancy has not been reported in the syndrome, it is likely that people with BDLS are fertile. Though most BDLS children reared at home survive through adolescence, a significant degree of psychomotor retardation and difficult medical management problems still occur.
Hawley P P; Jackson L G; Kurnit D M
American Journal of Medical Genetics
1985
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<a href="http://doi.org/10.1002/ajmg.1320200306" target="_blank" rel="noreferrer noopener">10.1002/ajmg.1320200306</a>
Rett's syndrome: Characterization of respiratory patterns and sleep
etiology; ataxia; major clinical study; central nervous system; priority journal; seizure; human; child; diagnosis; Rett syndrome; autism; dementia; heredity; hyperpnea; respiratory system; sleep; breathing difficulties; sleep disturbance; trajectory; characteristics; abnormal respiratory problems; abnormal sleep patterns
Rett's syndrome is a progressive disorder that occurs in females and is characterized by autistic behavior, dementia, ataxia, loss of purposeful use of the hands, and seizures. Patients with Rett's syndrome have been observed to have stereotyped hand movements (hand-washing) and to exhibit intermittent hyperventilation. To characterize more precisely the sleep and respiratory patterns associated with this disorder, polygraphic studies were made during sleep and wakefulness in 11 patients with this syndrome. These studies showed abnormal respiratory patterns during wakefulness, and abnormal sleep and electroencephalographic characteristics. The patients had decreased percentages of rapid-eye-movement sleep, and during wakefulness, a pattern of disorganized breathing was observed in all 11 patients and consisted of hypoxia followed by a period of increased respiratory rate and effort. The occurrence of disorganized breathing and compensatory hyperpnea during wakefulness with regular, continuous breathing during sleep is characteristic of Rett's syndrome and suggests an altered or impaired voluntary/behavioral respiratory control system.
Glaze D G; Frost Jr J D; Zoghbi H Y; Percy A K
Annals of Neurology
1987
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<a href="http://doi.org/10.1002/ana.410210410" target="_blank" rel="noreferrer noopener">10.1002/ana.410210410</a>
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>
Follow-up on seven adult patients with mild Sanfilippo B-disease.
Female; Humans; Male; Adult; Follow-Up Studies; Age Factors; Longitudinal Studies; Dementia/complications/genetics; Mental Retardation/complications/genetics; Mucopolysaccharidoses/genetics; Mucopolysaccharidosis III/genetics; Pedigree
This report describes 7 patients, aged 30 to 43 years, suffering from a mild variant of Sanfilippo B-disease. Somatic findings in these patients are unremarkable. Dementia and behavioral disturbances occurred late in the course of the disease. All 7 patients were examined 10 years previous to this study and reported in earlier publications [van de Kamp et al, 1976, 1981].
1987
van Schrojenstein-de Valk HM; van de Kamp JJ
American Journal Of Medical Genetics
1987
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Journal Article
<a href="http://doi.org/10.1002/ajmg.1320280118" target="_blank" rel="noreferrer">10.1002/ajmg.1320280118</a>
Therapeutic modification of membrane lipid abnormalities in juvenile neuronal ceroid-lipofuscinosis (Batten disease).
Humans; Follow-Up Studies; Longitudinal Studies; adolescent; Corn Oil/therapeutic use; Dietary Fats; Fish Oils/therapeutic use; Lipid Metabolism; Lipoproteins/blood; Neuronal Ceroid-Lipofuscinoses/diet therapy/drug therapy/therapy
Five patients with juvenile neuronal ceroid-lipofuscinosis, who were shown to have absent or reduced serum prebetalipoprotein and a deficiency of polyunsaturated fatty acids in erythrocyte membrane lipids, were treated for a period of one year with supplements of fish oil extract (rich in omega-3 fatty acids) and encouraged to increase dietary intake of corn oil lipid (rich in omega-6 fatty acids) in an attempt to promote incorporation of these fatty acids into membranes. After one year there was a significant increase in omega-3 fatty acids (P less than 0.05) and in the total polyunsaturated fatty acids (P less than 0.02) in erythrocyte membranes but no change in the incorporation of omega-6 fatty acids. The patients were assessed clinically, psychometrically and neurophysiologically before and after the supplementation. No significant changes were noted after one year of treatment.
1988
Bennett MJ; Hosking GP; Gayton R; Thompson G; Galloway JH; Cartwright IJ
American Journal Of Medical Genetics
1988
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Journal Article
<a href="http://doi.org/10.1002/ajmg.1320310630" target="_blank" rel="noreferrer">10.1002/ajmg.1320310630</a>
Beta-endorphin disregulation in autistic and self-injurious behavior: a neurodevelopmental hypothesis
Humans; Male; Adult; Non-U.S. Gov't; Research Support; Comparative Study; Clinical Trials; Autistic Disorder/drug therapy/physiopathology; beta-Endorphin/blood/physiology; Developmental Disabilities/drug therapy/physiopathology; Homeostasis; Naloxone/therapeutic use; Naltrexone/diagnostic use
Peptides derived from pro-opiomelanocortin (POMC) influence neurodevelopmental processes. Earlier studies indicated that MSH/ACTH compounds improved behavioral efficiency in retarded individuals. Recent studies have shown that opiate blockers reduce treatment-resistant self-injurious behavior (SIB), an autistic-like, developmental disorder. Although the exact mechanisms are unknown, prenatal POMC disregulation, addiction to endogenous opiates and elevated pain threshold have been proposed to account for this behavior. In study one, four SIB patients were given 0, 25, 50 or 100 mg of naltrexone on separate weeks in a double blind, Latin square design. A specific dose dependent reduction in SIB was observed in three patients. In study two, plasma b-endorphin was measured in 40 patients with SIB, a related behavior, stereotypy (ST) or controls. SIB and ST patients had higher levels of endorphin than controls. These data added new support for the role of b-endorphin in a treatment-resistant patient group.
1988
Sandman CA
Synapse (new York, N.Y.)
1988
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Journal Article
<a href="http://doi.org/10.1002/syn.890020304" target="_blank" rel="noreferrer">10.1002/syn.890020304</a>
Congenital malformations of the central nervous system in a 1-year birth cohort followed to the age of 14 years
Child; Humans; infant; Follow-Up Studies; Disabled Persons; adolescent; Preschool; infant; Q3 Literature Search; Newborn; Abnormalities; Central Nervous System/abnormalities; Hydrocephalus/congenital; Meningomyelocele/diagnosis; Multiple/diagnosis
A 1-year birth cohort from northern Finland comprised 12,058 children, 96% of all live-born infants born in the region in 1966. The development and morbidity of these children were followed up to the age of 14 years. Altogether, 40 children (25 boys and 15 girls) 3.32 per 1,000 suffered from congenital malformations of the central nervous system (CNS). Fourteen (1.16) had spina bifida cystica, 17 (1.41) hydrocephalus, and 9 (0.75) miscellaneous other malformations. Altogether, 14 children died during the follow-up period, giving a prevalence of 2.21 per 1,000 at 14 years. Additional neurological handicaps, mental retardation, cerebral palsy or epilepsy were present in 23 children, 13 of whom had multiple handicaps. Of these children 26% were able to attend an ordinary school in the class appropriate for their age. It is concluded that the incidences for CNS malformations obtained in this study are very much higher than those reported in the Finnish Register of Congenital Malformations, but correspond very well to the figures obtained in the British 1958 birth cohort, which was studied in an analogous way.
1986
von Wendt L; Rantakallio P
Child's Nervous System
1986
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Journal Article
<a href="http://doi.org/10.1007/bf00286225" target="_blank" rel="noreferrer">10.1007/bf00286225</a>
Radiological manifestations of bisphosphonate treatment with APD in a child suffering from osteogenesis imperfecta
Child; Female; Humans; Follow-Up Studies; Clodronate; Diphosphonates/therapeutic use; Osteogenesis Imperfecta/drug therapy/radiography
A 12-year-old female suffering from osteogenesis imperfecta (OI) was treated with 3-amino-1-hydroxypropylidene-1,1-bisphosphonate (APD) orally, 250 mg daily, for periods of 2 months, alternating with periods of 2 months of abstinence. Total duration of therapy was 1 year. Radiological and clinical improvement was striking. Furthermore, X-rays of the bones showed large, parallel radio-opaque striae, corresponding exactly to the periods of therapy. These were present in all metaphyses.
1987
Devogelaer JP; Malghem J; Maldague B; Nagant de Deuxchaisnes C
Skeletal Radiology
1987
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Journal Article
<a href="http://doi.org/10.1007/bf00350961" target="_blank" rel="noreferrer">10.1007/bf00350961</a>
Medical foster care for seriously medically ill children: A growing need
Parent caregivers
This article identifies and lists the problems of children with complex medical conditions and/or complex home health case needs. Five categories of seriously chronically ill children are identified and programs to meet their needs discussed. The authors believe many of these children could benefit from foster home placements
they discuss one project in which there is collaboration between a pediatric medical center and a social service agency.
Yost DM; Hochstadt NJ
Child And Adolescent Social Work
1987
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Journal Article
<a href="http://doi.org/10.1007/bf00756464" target="_blank" rel="noreferrer">10.1007/bf00756464</a>
Effects of framing and level of probability on patients' preferences for cancer chemotherapy
Female; Humans; Male; Adult; Attitude to Health; Prognosis; Aged; Middle Aged; Patient Participation; Health Status; Probability; Informed Consent; adolescent; Non-U.S. Gov't; Research Support; Neoplasms/drug therapy/mortality/psychology; Random Allocation
Although most clinicians agree that patients should be informed about treatment alternatives, little is known about the way patients perceive probabilistic information about treatment outcomes and how it influences the choices they make. The purpose of this study was to examine the influence of level and framing of probability on preferences for cancer treatment alternatives in which tradeoffs between quantity and quality of life are made. 129 healthy volunteers and 154 cancer patients indicated their preferences for a toxic treatment over a non-toxic treatment at varying survival probabilities. Subjects responded to questions in one of three randomly assigned conditions: (1) a positive frame in which the probability of survival was given; (2) a negative frame in which the probability of dying was given; and (3) a mixed frame in which the probability of surviving and dying were both given. The cancer patients' preferences for the more effective toxic treatment was significantly stronger than the healthy volunteers. Both groups were significantly influenced by the level of probability that was presented. Preferences for the toxic treatment were weaker when the chance of survival dropped below 50%. This weakening preference below 50% survival was enhanced for subjects who responded in the negative frame. A negative frame or probability level below 0.5 would seem to stimulate a "dying mode" type of value system in which quality of life becomes more salient in decision making than quantity of life. The implications in eliciting informed consent from patients are discussed.
1989
O'Connor AM
Journal Of Clinical Epidemiology
1989
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Journal Article
<a href="http://doi.org/10.1016/0895-4356(89)90085-1" target="_blank" rel="noreferrer">10.1016/0895-4356(89)90085-1</a>
Withholding nutrition from seriously ill newborn infants: a parent's perspective
Humans; infant; Male; Adult; Parents; Withholding Treatment; Euthanasia; Age Factors; Patient Selection; Morals; Enteral Nutrition; Death and Euthanasia; Newborn; Euthanasia; Brain Diseases; Diseases; Jurisprudence; Passive
1988
Miraie ED
The Journal Of Pediatrics
1988
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Journal Article
<a href="http://doi.org/10.1016/s0022-3476(88)80262-2" target="_blank" rel="noreferrer">10.1016/s0022-3476(88)80262-2</a>
Risk of secondary bacterial infection in infants hospitalized with respiratory syncytial viral infection
Child; Humans; Prospective Studies; Risk Factors; Preschool; infant; Anti-Bacterial Agents/therapeutic use; Bacterial Infections/etiology; Pneumonia/etiology; Respiratory Syncytial Viruses; Respiratory Tract Infections/complications/drug therapy; Respirovirus Infections/complications/drug therapy
Because infants hospitalized with respiratory syncytial virus (RSV) infection frequently receive antibiotics, our study was undertaken to determine what the actual risk of secondary bacterial infections in patients with RSV infection is and what effect antibiotic treatment might have on the course of illness. In a 9-year prospective study of 1706 children hospitalized with acute respiratory illnesses, 565 children had documented RSV infections. A subsequent bacterial infection rarely developed in those with RSV lower respiratory tract disease. The rate of subsequent bacterial infection was 1.2% in the total group of children infected with RSV, and 0.6% in the 352 children who received no antibiotics. A significantly greater proportion (4.5%) of subsequent bacterial infections occurred in infants who received parenteral antibiotics (p = 0.01), and especially in a subgroup who received parenteral antibiotics for 5 or more days (11%, p less than 0.001). We conclude that the risk of secondary bacterial infection appears to be low for most infants with RSV infection. In a few infants given parenteral broad-spectrum antibiotics the risk may be greater, but whether this is related to the antibiotic therapy or to other risk factors is not clear.
1988
Hall CB; Powell KR; Schnabel KC; Gala CL; Pincus PH
The Journal Of Pediatrics
1988
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Journal Article
<a href="http://doi.org/10.1016/s0022-3476(88)80263-4" target="_blank" rel="noreferrer">10.1016/s0022-3476(88)80263-4</a>
Status of pediatric pain control: a comparison of hospital analgesic usage in children and adults
Child; Female; Male; Adult; Age Factors; Hospitals; Pediatric; Preschool; Human; Palliative Care; Analgesics/therapeutic use
A chart review was conducted of the records of 90 children and 90 adults, randomly selected and matched for sex and diagnosis, to investigate analgesic usage. Four diagnostic categories (hernias, appendectomies, burns, and fractured femurs) at two hospitals were examined. Results revealed that adults received an average of 2.2 doses of narcotics per day, whereas children received 1.1 (P = .0001). Significant differences in dosing were noted between the diagnostic categories. Diagnoses associated with a longer hospital stay showed a greater discrepancy between narcotic usage in children and adults. Hospital differences were also significant (P = .004) with more doses per day administered at the urban hospital than the rural one. Infants and young children were less likely than older children to have narcotics ordered for them, but, if ordered, frequency of administration was similar for all children. Our study demonstrates that children and adults with the same diagnoses are treated differently as regards narcotic administration. Further research is necessary to determine whether these results represent a difference in pain tolerance in children or a lack of recognition of their discomfort.
1986
Schechter NL; Allen DA; Hanson K
Pediatrics
1986
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Journal Article
<a href="http://doi.org/10.1016/s0022-5347(17)44516-2" target="_blank" rel="noreferrer">10.1016/s0022-5347(17)44516-2</a>
The undertreatment of pain in children: an overview
1989
Schechter NL
Pediatric Clinics Of North America
1989
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Journal Article
<a href="http://doi.org/10.1016/s0031-3955(16)36721-9" target="_blank" rel="noreferrer">10.1016/s0031-3955(16)36721-9</a>
Management of burn pain in children
Child; Humans; Analgesics; Patient Compliance; Analgesics/administration & dosage/therapeutic use; Bandages/adverse effects; Burns/complications/physiopathology; Opioid/administration & dosage/pharmacokinetics/pharmacology/therapeutic use; Pain/physiopathology/therapy
In spite of the many possible methods of pain control in the burned child satisfactory pain management may still be a problem, at times formidable. The most fruitful approach would seem to be frequent assessment of pain in the individual patient with a readiness to try alternative or additional measures when relief seems inadequate. In this way the most effective analgesic agent(s), route(s), and frequency of administration, as well as nonpharmacologic methods, can be determined for each child. Among those able to speak, pain estimation is usually easily accomplished. In infants and those intubated for supported ventilation, however, the task is more difficult. Nevertheless, careful observation of physiologic signs such as heart rate and blood pressure, facial expressions, body movement and position, and the quality of an infant's cries may in sum be sufficient to evaluate the intensity of pain. Monitoring of analgesic plasma levels to ascertain that they are within the ranges established for good analgesia and even determination of beta-endorphin blood levels may also aid in judging the adequacy of analgesia. By tailoring pain management methods to the needs of each child it may be possible to keep pain at acceptable levels in victims of burn injury.
1989
Osgood PF; Szyfelbein SK
Pediatric Clinics Of North America
1989
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Journal Article
<a href="http://doi.org/10.1016/s0031-3955(16)36733-5" target="_blank" rel="noreferrer">10.1016/s0031-3955(16)36733-5</a>
Ensuring quality hospice care for the person with AIDS
1986
Martin JP
Quality Review Bulletin
1986
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Journal Article
<a href="http://doi.org/10.1016/s0097-5990(16)30074-4" target="_blank" rel="noreferrer">10.1016/s0097-5990(16)30074-4</a>
Assessing the quality of care in a hospice program
As the hospice movement comes of age, it must be as accountable for the quality of its services as other health care delivery systems. To this end, the Hospice Program of the Butler County (Pennsylvania) Visiting Nurses Association has begun a more systematic approach to monitoring and evaluating the quality and appropriateness of patient care. The agency's quality assurance (QA) committee used specific indicators and criteria for assessing the appropriateness of its services over a year. The process enabled agency staff to gain experience with QA activities and provided the basis for a more comprehensive program.
1987
Yeadon BE
Quality Review Bulletin
1987
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Journal Article
<a href="http://doi.org/10.1016/s0097-5990(16)30159-2" target="_blank" rel="noreferrer">10.1016/s0097-5990(16)30159-2</a>
When a child dies: The sociobiology of bereavement
Child; bereavement
1986
Littlefield CH; Rushton JP
Journal Of Personality And Social Psychology
1986
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Journal Article
<a href="http://doi.org/10.1037//0022-3514.51.4.797" target="_blank" rel="noreferrer">10.1037//0022-3514.51.4.797</a>
Structural equation modelling in practice: a review and recommended two-step approach.
1988
Anderson J; Gerbing D
Psychological Bulletin
1988
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Journal Article
<a href="http://doi.org/10.1037//0033-2909.103.3.411" target="_blank" rel="noreferrer">10.1037//0033-2909.103.3.411</a>
Sublingual absorption of selected opioid analgesics
Humans; Adult; Analgesics; Time Factors; Analysis of Variance; Non-U.S. Gov't; P.H.S.; Research Support; U.S. Gov't; Comparative Study; Administration; Biological Availability; Buprenorphine/pharmacokinetics; Fentanyl/pharmacokinetics; Heroin/pharmacokinetics; Hydromorphone/pharmacokinetics; Levorphanol/pharmacokinetics; Methadone/pharmacokinetics; Morphine/blood/pharmacokinetics; Mouth/metabolism; Naloxone/pharmacokinetics; Opioid/administration & dosage/pharmacokinetics; Oxycodone/pharmacokinetics; Sublingual
Ongoing interest in the improvement of pain management with opioid analgesics had led to the investigation of sublingual opioid absorption. The present report determined the percent absorption of selected opioid analgesics from the oral cavity of normal subjects under conditions of controlled pH and swallowing when a 1.0 ml aliquot of the test drug was placed under the tongue for a 10-minute period. Compared with morphine sulfate at pH 6.5 (18% absorption), buprenorphine (55%), fentanyl (51%), and methadone (34%) were absorbed to a significantly greater extent (p less than 0.05), whereas levorphanol, hydromorphone, oxycodone, heroin, and the opioid antagonist naloxone were not. Overall, lipophilic drugs were better absorbed than were hydrophilic drugs. Plasma morphine concentration-time profiles indicate that the apparent sublingual bioavailability of morphine is only 9.0% +/- 11.9% (SD) of that after intramuscular administration. In the same subjects the estimated sublingual absorption was 22.4% +/- 9.2% (SD), indicating that the sublingual absorption method may overestimate apparent bioavailability. When the oral cavity was buffered to pH 8.5, methadone absorption was increased to 75%. Thus, an alkaline pH microenvironment that favors the unionized fraction of opioids increased sublingual drug absorption. Although absorption was found to be independent of drug concentration, it was contact time dependent for methadone and fentanyl but not for buprenorphine. These results indicate that although the sublingual absorption and apparent sublingual bioavailability of morphine are poor, the sublingual absorption of methadone, fentanyl, and buprenorphine under controlled conditions is relatively high.
1988
Weinberg DS; Inturrisi CE; Reidenberg B; Moulin DE; Nip TJ; Wallenstein S; Houde RW; Foley KM
Clinical Pharmacology And Therapeutics
1988
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Journal Article
<a href="http://doi.org/10.1038/clpt.1988.159" target="_blank" rel="noreferrer">10.1038/clpt.1988.159</a>
Spontaneous pneumothorax, pneumomediastinum, and pneumopericardium in a 16-year-old drug-abusing motorcyclist surrounded by a pack of coyotes
Humans; Male; Animals; adolescent; Mediastinal Emphysema/etiology; Motorcycles; Panic; Pneumopericardium/etiology; Pneumothorax/etiology; Smoke Inhalation Injury/complications; Substance-Related Disorders/complications; Wild
Numerous causes of pneumothorax, pneumomediastinum, and pneumopericardium have been described in the literature. The authors report a unique case in which one or more causes may have contributed to the patient's condition.
1989
Haines JD; Chop WM; Swyden SN
Postgraduate Medicine
1989
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Journal Article
<a href="http://doi.org/10.1080/00325481.1989.11704431" target="_blank" rel="noreferrer">10.1080/00325481.1989.11704431</a>
Plasma beta-endorphin during clinical and experimental ischaemic pain
Female; Humans; Male; Adult; Aged; Middle Aged; beta-Endorphin/blood; Biomarkers of Pain; Radioimmunoassay/methods; Angina Pectoris/blood; Blood Specimen Collection; Exertion; Muscles/physiology; Myocardial Infarction/blood; Pain/blood/etiology; Tourniquets
An improved radio-immunoassay using an antiserum directed towards the N-terminal part of the endogenous opioid peptide beta-endorphin 1-31 (beta-EP) was validated and applied to a study of beta-EP in plasma during ischaemic pain. Experimental ischaemic pain induced in seven healthy volunteers by the submaximal effort tourniquet test did not change plasma beta-EP or adrenocorticotrophin. Plasma beta-EP was determined in 21 patients with acute myocardial infarction (AMI) and in seven patients with unstable angina pectoris. Plasma beta-EP was 4.9 fmol/ml with 95% confidence limits, 3.2-7.8 fmol/ml in AMI patients at admittance, and 2.9 (2.0-3.4) fmol/ml one week later in stable and pain-free condition (p less than 0.05). The level in 49 healthy persons was 2.8 (2.4-2.9) fmol/ml. Elevated beta-EP levels were found in five AMI patients with cardiogenic shock and in four AMI patients dying within 24 h after admittance compared to the rest of AMI patients (p less than 0.02). beta-EP was not elevated during unstable angina pectoris, although pain scores were similar to AMI. The AMI group revealed a significant, although weak, positive correlation between plasma beta-EP and pain score (Spearman r = 0.49, p less than 0.05), while there was no correlation during unstable angina pectoris. beta-EP was not correlated to the amount of morphine required within the 48 h after admittance of AMI patients. We conclude that the increase of beta-EP in plasma during AMI may be due to stressful factors other than ischaemic pain and that it is questionable whether beta-EP in plasma is related to antinociception.
1987
Bach FW; Fahrenkrug J; Jensen K; Dahlstrom G; Ekman R
Scandinavian Journal Of Clinical And Laboratory Investigation
1987
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Journal Article
<a href="http://doi.org/10.1080/00365518709168942" target="_blank" rel="noreferrer">10.1080/00365518709168942</a>
Preventing psychosocial impairment in siblings of terminally ill children
Child; Humans; Grief; Death; Sibling Relations; Stress; adolescent; Preschool; Adaptation; Psychological; Family/psychology; Parent caregivers; Psychological/prevention & control
A review of the literature provides the basis for a discussion of the impact of sibling death on healthy children whose emotional needs may be unattended both by parents and professionals. Factors which may deter hospice practitioners from delivering effective psychosocial care to siblings are identified and recommendations for preventive intervention are enumerated.
1989
Bendor SJ
The Hospice Journal
1989
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Journal Article
<a href="http://doi.org/10.1080/0742-969x.1989.11882661" target="_blank" rel="noreferrer">10.1080/0742-969x.1989.11882661</a>
Research on the effect of parental bereavement: implications for social work intervention
Child; Grief; Parents; Death; Social Work; bereavement; Intervention; Interventions
An increasing body of research suggests that the death of a child results in a unique form of bereavement for surviving parents. A study reviewed research findings on parental bereavement, including those from the author's ongoing longitudinal study. Parental bereavement has been found to have long-term effects on the mental health of the parents and on the quality of their marriage. Changes in identity, many of them positive, often occur after bereavement. Circumstances that operate as predictors of adjustment to bereavement include cause of death, child's age, sex of the parent, and parents' coping strategies. Implications of these findings for social work practice are outline
1987
Videka-Sherman L
Social Service Review
1987
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Journal Article
<a href="http://doi.org/10.1086/644421" target="_blank" rel="noreferrer">10.1086/644421</a>
Elderly psychiatric patient status and caregiver perceptions as predictors of caregiver burden
Humans; Family; Parent-Child Relations; Interpersonal Relations; Aged; Activities of Daily Living; Stress; Non-U.S. Gov't; Research Support; Psychological Tests; Psychological/psychology; Home Nursing/psychology; Mental Disorders/psychology; Mental Status Schedule
1988
Pearson J; Verma S; Nellett C
The Gerontologist
1988
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Journal Article
<a href="http://doi.org/10.1093/geront/28.1.79" target="_blank" rel="noreferrer">10.1093/geront/28.1.79</a>
Do we need another "stress and caregiving" study?
Humans; Health Services Research; Psychological; Stress; home care services
1989
Zarit SH
The Gerontologist
1989
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Journal Article
<a href="http://doi.org/10.1093/geront/29.2.147" target="_blank" rel="noreferrer">10.1093/geront/29.2.147</a>
Husbands and wives as caregivers: antecedents of depression and burden
Humans; Mental Health; Sex Factors; Depression; Regression Analysis; P.H.S.; Research Support; U.S. Gov't; Interviews; Alzheimer Disease/psychology; Marriage; Home Nursing/psychology
Contrasting predictors of depression among 101 men and 214 women providing care to spouses suffering from Alzheimer's Disease indicated that the sole predictor for husbands was ill health, whereas for wives less emotional investment was also predictive. While there were no significant predictors for burden among husbands, for wives, burden was associated with poorer health, less emotional investment, greater spouse impairment, and provision of more assistance with tasks.
1989
Pruchno RA; Resch NL
The Gerontologist
1989
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Journal Article
<a href="http://doi.org/10.1093/geront/29.2.159" target="_blank" rel="noreferrer">10.1093/geront/29.2.159</a>
Children's perceptions of physicians and medical care: two measures
Child; Humans; Questionnaires; Physicians; Clinical Competence; Child Health Services; Consumer Satisfaction; adolescent; Social Perception
1988
Rifkin L; Wolf MH; Lewis CC; Pantell RH
Journal of Pediatric Psychology
1988
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Journal Article
<a href="http://doi.org/10.1093/jpepsy/13.2.247" target="_blank" rel="noreferrer">10.1093/jpepsy/13.2.247</a>
Development of a brief coping checklist for use with pediatric populations.
Child; Humans; Longitudinal Studies; Psychometrics; Reference Values; adolescent; Adaptation; Psychological; Chronic Disease/psychology
1988
Spirito A; Stark LJ; Williams C
Journal of Pediatric Psychology
1988
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Journal Article
<a href="http://doi.org/10.1093/jpepsy/13.4.555" target="_blank" rel="noreferrer">10.1093/jpepsy/13.4.555</a>
Mourning the Death of a Child: The Family and Group Process.
SSHRC CURA
1985
Soricelli B; Utech C
Social Work
1985
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Journal Article
<a href="http://doi.org/10.1093/sw/30.5.429" target="_blank" rel="noreferrer">10.1093/sw/30.5.429</a>
Pharmacokinetics of methadone in children and adolescents in the perioperative period
Child; Analgesics; Methadone; Narcotics; adolescent; Opioid; Antitussive Agents; Biological Transport; Kinetics; Perioperative Care; Pharmacokinetics
Introduction Previous studies by Gourlay and coworkers1-3 have demonstrated that in adults undergoing surgery, methadone has slow elimination and a very long duration of effective analgesia. For children, intramuscular injections are a major source of distress in the peri-operative period. If methadone behaves in children as it does for adults, then use of methadone intravenously should provide a steady analgesic effect. For these reasons, we have undertaken studies of methadone in children and adolescents undergoing major surgery. Methods Fifteen children and adolescents, ages 1-18 years were enrolled with informed parental and patient consent according to procedures approved by the institutional Human Studies committee. Enrollment was restricted to patients requiring prolonged surgery (greater than 3 hours) and placement of arterial cannulae or multiple venous cannulae. Included in the studey were 3 one-year olds, 2 two-year olds and 2 three-year olds. Following tracheal intubation and line placement, methadone (0.2 mg/kg) was administered via rapid intravenous bolus. Heparinized plasma samples for methadone assay were obtained at approzimately 1, 2, 3, 4, 7, 10, and 30 minutes and 1, 3, 6, 12, 18, 24, 48, and 72 hours. Methadone assay (gas-liquid chromatography with mass spectrometry) yielded a lower detection limit of 5 ng/ml; for several patients the final 1-4 points fell below the detection limit and were excluded from analysis. Concentration versus time curves were fitted to a bioexponential equation using nonlinear least-squares. Results Kinetic parameters are summarized in Table 1. It is apparent that in children and adolescents ages 1 to 18 years, methadone has very prolonged elimination and a low clearance rate. For this population, regression analysis showed no dependence of half-lives or normalized volumes and clearances on patient age or weight. Areas under the concentration-versus-time curves from the equation parameters and from the trapezoid rule (model-independent) agreed to within 4%. Discussion Methadone has not been studied previously for post-operative pain in children. Observation of the patients in this study and of 16 additional children suggests that methadone provides prolonged analgesia; many children remained comfortable and required no analgesia for 12-36 hours post-operatively. Studies in progress are directed at testing these impressions via double-blinded administration and formal pain assessment scales. If these studies confirm that methadone's dynamics as well as kinetics are similar in children and adults, then peri-operative administration would be a safe, inexpensive and convenient means for providing prolonged analgesia and decreasing the use of painful intramuscular narcotic injections in children following major surgery. In adults ages 29-69 years, there was a positive correlation between age and beta half life. In the present study, we found no dependence of elimination half-life or normalized clearance on age for patients ages 1-18. The mean value for elimination half-life in the present study, 19.2 hours, is indistinguishable from that of the youngest adults in the previous study. As with adults, there is substantial variability among children in the rates and volumes of methadone distribution and elimination. It therefore seems prudent to follow an approach similar to that used in adults with titration to clinical effect. To date, at least 40 children have received methadone (via blinded or unblinded administration) in this fashion without requiring naloxone or assisted ventilation postoperatively. Further study is required before these conclusions can be extrapolated to newborns and very young infants.
1987
Berde CB; Sethna NF; Holzman RS; Reidy P; Gondek EJ
Anesthesiology
1987
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Journal Article
<a href="http://doi.org/10.1097/00000542-198709001-00519" target="_blank" rel="noreferrer">10.1097/00000542-198709001-00519</a>
The use of oral methadone to control moderate and severe pain in children and young adults with malignancy
Child; Pain; Methadone; adolescent; Administration; Oral; Neoplasms
Twenty-two courses of oral methadone were given to control moderate or severe pain in 19 children with cancer. Of these, 21 courses gave adequate pain control for periods of 5 to 267 days (median 24 days). In 16 courses, methadone was continued until death or until the pain resolved; in five remaining courses, a change to parenteral narcotics was ultimately required. Toxicity was minimal. A safe starting dose of methadone appears to be 0.1 mg/kg given every 4 hours, or the equivalent total daily dose given less frequently, with escalation as required to achieve and maintain adequate pain control.
1986
Miser AW; Miser JS
The Clinical Journal Of Pain
1986
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Journal Article
<a href="http://doi.org/10.1097/00002508-198501040-00010" target="_blank" rel="noreferrer">10.1097/00002508-198501040-00010</a>
Pediatric risk of mortality (PRISM) score
Child; Humans; infant; Intensive Care Units; mortality; Severity of Illness Index; Risk Factors; Pediatric; Preschool; Infant Mortality; Multicenter Studies as Topic; ROC Curve
The Pediatric Risk of Mortality (PRISM) score was developed from the Physiologic Stability Index (PSI) to reduce the number of physiologic variables required for pediatric ICU (PICU) mortality risk assessment and to obtain an objective weighting of the remaining variables. Univariate and multivariate statistical techniques were applied to admission day PSI data (1,415 patients, 116 deaths) from four PICUs. The resulting PRISM score consists of 14 routinely measured, physiologic variables, and 23 variable ranges. The performance of a logistic function estimating PICU mortality risk from the PRISM score, age, and operative status was tested in a different sample from six PICUs (1,227 patients, 105 deaths), each PICU separately, and in diagnostic groups using chi-square goodness-of-fit tests and receiver operating characteristic (ROC) analysis. In all groups, the number and distribution of survivors and nonsurvivors in adjacent mortality risk intervals were accurately predicted: total validation group (chi 2(5) = 0.80; p greater than .95), each PICU separately (chi 2(5) range 0.83 to 7.38; all p greater than .10), operative patients (chi 2(5) = 2.03; p greater than .75), nonoperative patients (chi 2(5) = 2.80, p greater than .50), cardiovascular disease patients (chi 2(5) = 4.72; p greater than .25), respiratory disease patients (chi 2(5) = 5.82; p greater than .25), and neurologic disease patients (chi 2(5) = 7.15; p greater than .10). ROC analysis also demonstrated excellent predictor performance (area index = 0.92 +/- 0.02).
1988-11
Pollack MM; Ruttimann UE; Getson PR
Critical Care Medicine
1988
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Journal Article
<a href="http://doi.org/10.1097/00003246-198811000-00006" target="_blank" rel="noreferrer">10.1097/00003246-198811000-00006</a>
Variation in clinical practice in the managmenet of febrile seizures
Quality improvement
1985
Chessare J; Berwick D
Pediatric Emergency Care
1985
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Journal Article
<a href="http://doi.org/10.1097/00006565-198503000-00006" target="_blank" rel="noreferrer">10.1097/00006565-198503000-00006</a>
The problem of rigor in qualitative research
Qualitative Research; Research
1986
Sandelowski M
Advances In Nursing Science
1986
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Journal Article
<a href="http://doi.org/10.1097/00012272-198604000-00005" target="_blank" rel="noreferrer">10.1097/00012272-198604000-00005</a>
Endogenous opioid activity in clinical hemorrhagic shock
Female; Humans; Male; Adult; Aged; Middle Aged; Blood Pressure; adolescent; Biomarkers of Pain; Radioimmunoassay; Wounds; Hydrocortisone/blood; Accidents; Endorphins/blood/metabolism; Hemorrhagic/blood/etiology/physiopathology; Nonpenetrating/blood/etiology/physiopathology; Shock; Traffic; Trauma Centers
Plasma beta-endorphin, cortisol and total opioid-like activities were measured upon arrival at the hospital in ten patients with extensive trauma and in a state of shock and 11 patients with minor injury. Patients in a state of shock had significantly (p less than 0.01) higher mean plasma beta-endorphin immunoreactivity than patients with minor trauma (128.8 +/- 24.8 picomolars versus 31.7 +/- 5.6 picomolars). There were no significant intergroup differences in the mean plasma cortisol concentration (27.7 +/- 4.7 micrograms per deciliter versus 20.6 +/- 2.7 micrograms per deciliter) or opioid ligand activity (2.28 +/- 0.62 nanomolars versus 3.17 +/- 0.99 nanomolars). These data are consistent with the hypothesis that certain endogenous opioids may be physiopathologic factors in hemorrhagic shock but provide no proof of a cause and effect relationship.
1985
Shatney CH; Cohen RM; Cohen MR; Imagawa DK
Surgery, Gynecology & Obstetrics
1985
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Journal Article
<a href="http://doi.org/10.1097/00132586-198606000-00011" target="_blank" rel="noreferrer">10.1097/00132586-198606000-00011</a>