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1.
Neurology ; 99(6): 237-245, 2022 08 09.
Article in English | MEDLINE | ID: mdl-35715199

ABSTRACT

Dystonia in cerebral palsy (DCP) is a common, debilitating, but understudied condition. The CP community (people with CP and caregivers) is uniquely equipped to help determine the research questions that best address their needs. We developed a community-driven DCP research agenda using the well-established James Lind Alliance methodology. CP community members, researchers, and clinicians were recruited through multiple advocacy, research, and professional organizations. To ensure shared baseline knowledge, participants watched webinars outlining our current knowledge on DCP prepared by a Steering Group of field experts (cprn.org/research-cp-dystonia-edition). Participants next submitted their remaining uncertainties about DCP. These were vetted by the Steering Group and consolidated to eliminate redundancy to generate a list of unique uncertainties, which were then prioritized by the participants. The top-prioritized uncertainties were aggregated into themes through iterative consensus-building discussions within the Steering Group. 166 webinar viewers generated 67 unique uncertainties. 29 uncertainties (17 generated by community members) were prioritized higher than their randomly matched pairs. These were coalesced into the following top 10 DCP research themes: (1) develop new treatments; (2) assess rehabilitation, psychological, and environmental management approaches; (3) compare effectiveness of current treatments; (4) improve diagnosis and severity assessments; (5) assess the effect of mixed tone (spasticity and dystonia) in outcomes and approaches; (6) assess predictors of treatment responsiveness; (7) identify pathophysiologic mechanisms; (8) characterize the natural history; (9) determine the best treatments for pain; and (10) increase family awareness. This community-driven research agenda reflects the concerns most important to the community, both in perception and in practice. We therefore encourage future DCP research to center around these themes. Furthermore, noting that community members (not clinicians or researchers) generated the majority of top-prioritized uncertainties, our results highlight the important contributions community members can make to research agendas, even beyond DCP.


Subject(s)
Biomedical Research , Cerebral Palsy , Dystonia , Dystonic Disorders , Caregivers , Cerebral Palsy/complications , Cerebral Palsy/therapy , Dystonic Disorders/therapy , Humans , Research Personnel , Uncertainty
2.
J Otolaryngol Head Neck Surg ; 49(1): 30, 2020 May 15.
Article in English | MEDLINE | ID: mdl-32414407

ABSTRACT

The 2019 novel coronavirus disease (COVID-19) epidemic originated in Wuhan, China and spread rapidly worldwide, leading the World Health Organization to declare an official global COVID-19 pandemic in March 2020. In Hong Kong, clinicians and other healthcare personnel collaborated closely to combat the outbreak of COVID-19 and minimize the cross-transmission of disease among hospital staff members. In the field of otorhinolaryngology-head and neck surgery (OHNS) and its various subspecialties, contingency plans were required for patient bookings in outpatient clinics, surgeries in operating rooms, protocols in wards and other services. Infected patients may shed severe acute respiratory syndrome coronavirus-2 (SARS-CoV-2) particles into their environments via body secretions. Therefore, otolaryngologists and other healthcare personnel in this specialty face a high risk of contracting COVID-19 and must remain vigilant when performing examinations and procedures involving the nose and throat. In this article, we share our experiences of the planning and logistics undertaken to provide safe and efficient OHNS practices over the last 2 months, during the COVID-19 pandemic. We hope that our experiences will serve as pearls for otolaryngologists and other healthcare personnel working in institutes that serve large numbers of patients every day, particularly with regard to the sharing of clinical and administrative tasks during the COVID-19 pandemic.


Subject(s)
Coronavirus Infections/transmission , Infection Control/standards , Infectious Disease Transmission, Patient-to-Professional/prevention & control , Otolaryngology/standards , Pandemics , Patient Care/standards , Pneumonia, Viral/transmission , Betacoronavirus , COVID-19 , Coronavirus Infections/prevention & control , Head/surgery , Health Education , Hong Kong , Hospitalization , Humans , Infection Control/organization & administration , Neck/surgery , Otolaryngology/organization & administration , Outpatient Clinics, Hospital/organization & administration , Outpatient Clinics, Hospital/standards , Pandemics/prevention & control , Patient Care/methods , Pneumonia, Viral/prevention & control , SARS-CoV-2 , Telemedicine
3.
Cleft Palate Craniofac J ; 48(6): 684-9, 2011 Nov.
Article in English | MEDLINE | ID: mdl-21271799

ABSTRACT

OBJECTIVE: To determine the incidence of otitis media with effusion and the associated hearing loss, the rate of ventilation tube insertion, and complications of ventilation tube insertion in Chinese cleft palate patients. DESIGN: Retrospective review in a tertiary care hospital in Hong Kong. PATIENTS: A total of 104 consecutive patients with cleft lip and/or cleft palate who were born between January 1996 and January 2006. RESULTS: The incidence of otitis media with effusion in Chinese cleft palate patients for the first 2 years after birth was 76.1%. Of these patients, 16.9% had otitis media with effusion associated with a moderate hearing loss (>40 decibels hearing level [dBHL]). Approximately half (53.2%) of our patients had ventilation tube insertion. Complications including retraction, tympanosclerosis, and perforation of the tympanic membrane were found in 15.7% of all ears with otitis media with effusion and ventilation tube insertion. CONCLUSIONS: The high incidence of otitis media with effusion in cleft palate infants found in this study is consistent with that reported in the Western literature. A small but significant proportion of otitis media with effusion was associated with moderate hearing loss that truly required surgical treatment. Cleft palate children are much more likely to develop otitis media with effusion than normal children, and they develop the condition at an earlier age. A protocol for the treatment of otitis media with effusion in cleft palate patients and further prospective studies are warranted.


Subject(s)
Cleft Lip/complications , Cleft Palate/complications , Otitis Media with Effusion/etiology , Child , Child, Preschool , China/epidemiology , Cleft Lip/epidemiology , Cleft Palate/epidemiology , Female , Hearing Loss/epidemiology , Hearing Loss/etiology , Humans , Incidence , Male , Middle Ear Ventilation , Otitis Media with Effusion/epidemiology , Otitis Media with Effusion/therapy , Retrospective Studies
4.
Am J Gastroenterol ; 102(11): 2437-43, 2007 Nov.
Article in English | MEDLINE | ID: mdl-17662100

ABSTRACT

OBJECTIVES: The aim of our study was to compare three search strategies using a computerized administrative database to identify cases of idiosyncratic drug-induced liver injury (DILI) due to amoxicillin/clavulanic acid, phenytoin, valproic acid, and isoniazid. METHODS: In search 1, electronic medical records from patients seen between 1994 and 2004 with an ICD-9-CM code of acute liver injury were identified and cross-searched for the specific drug names in the dictation text. In search 2, all patients with an ICD-9-CM code of drug poisoning/overdose due to one of the four study drugs were identified. In search 3, patients with a poisoning code as well as an acute liver injury code were identified. RESULTS: Review of the records from the 7,395 search 1 patients yielded 51 DILI cases (0.7%). In contrast, the 566 search 2 patients yielded only three DILI cases (0.5%). Finally, search 3 provided the greatest specificity but a low rate of detection with only two patients (3.9%) having DILI due to one of the four drugs. CONCLUSION: Acute liver injury ICD-9-CM codes combined with a text search of the dictated medical record yielded the greatest number of DILI cases but was less specific than crossing acute liver injury and poisoning codes. Use of ICD-9-CM codes to identify rare adverse events like DILI remains problematic and highlights the need for prospective surveillance networks.


Subject(s)
Chemical and Drug Induced Liver Injury , International Classification of Diseases , Adolescent , Adult , Aged , Amoxicillin-Potassium Clavulanate Combination/adverse effects , Child , Child, Preschool , Drug-Related Side Effects and Adverse Reactions , Female , Humans , Infant , Isoniazid/adverse effects , Liver Diseases/epidemiology , Male , Medical Records Systems, Computerized , Michigan/epidemiology , Middle Aged , Phenytoin/adverse effects , Population Surveillance , Sensitivity and Specificity , United States/epidemiology , Valproic Acid/adverse effects
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