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1.
Healthcare (Basel) ; 11(5)2023 Mar 03.
Artigo em Inglês | MEDLINE | ID: mdl-36900752

RESUMO

Structural insights in the use of protocols and the extent of practice variation in EDs are lacking. The objective is to determine the extent of practice variation in EDs in The Netherlands, based on specified common practices. We performed a comparative study on Dutch EDs that employed emergency physicians to determine practice variation. Data on practices were collected via a questionnaire. Fifty-two EDs across The Netherlands were included. Thrombosis prophylaxis was prescribed for below-knee plaster immobilization in 27% of EDs. Vitamin C was prescribed in 50% of EDs after a wrist fracture. Splitting of applied casts to the upper or lower limb was performed in one-third of the EDs. Analysis of the cervical spine after trauma was performed by the NEXUS criteria (69%), the Canadian C-spine Rule (17%) or otherwise. The imaging modality for cervical spine trauma in adults was a CT scan (98%). The cast used for scaphoid fractures was divided between the short arm cast (46%) and the navicular cast (54%). Locoregional anaesthesia for femoral fractures was applied in 54% of the EDs. EDs in The Netherlands showed considerable practice variation in treatments among the subjects studied. Further research is warranted to gain a full understanding of the variation in practice in EDs and the potential to improve quality and efficiency.

2.
BMC Med Res Methodol ; 20(1): 156, 2020 06 15.
Artigo em Inglês | MEDLINE | ID: mdl-32539717

RESUMO

BACKGROUND: A proper application of the Delphi technique is essential for obtaining valid research results. Medical researchers regularly use Delphi studies, but reports often lack detailed information on methodology and controlled feedback: in the medical literature, papers focusing on Delphi methodology issues are rare. Since the introduction of electronic surveys, details on response times remain scarce. We aim to bridge a number of gaps by providing a real world example covering methodological choices and response times in detail. METHODS: The objective of our e(lectronic)-Delphi study was to determine minimum standards for emergency departments (EDs) in the Netherlands. We opted for a two-part design with explicit decision rules. Part 1 focused on gathering and defining items; Part 2 addressed the main research question using an online survey tool. A two-person consensus rule was applied throughout: even after consensus on specific items was reached, panellists could reopen the discussion as long as at least two panellists argued similarly. Per round, the number of reminders sent and individual response times were noted. We also recorded the methodological considerations and evaluations made by the research team prior to as well as during the study. RESULTS: The study was performed in eight rounds and an additional confirmation round. Response rates were 100% in all rounds, resulting in 100% consensus in Part 1 and 96% consensus in Part 2. Our decision rules proved to be stable and easily applicable. Items with negative advice required more rounds before consensus was reached. Response delays were mostly due to late starts, but once panellists started, they nearly always finished the questionnaire on the same day. Reminders often yielded rapid responses. Intra-individual differences in response time were large, but quick responders remained quick. CONCLUSIONS: We advise those considering Delphi study to follow the CREDES guideline, consider a two-part design, invest in personal commitment of the panellists, set clear decision rules, use a consistent lay-out and send out your reminders early. Adopting this overall approach may assist researchers in future Delphi studies and may help to improve the quality of Delphi designs in terms of improved rigor and higher response rates.


Assuntos
Medicina , Médicos , Consenso , Técnica Delphi , Humanos , Países Baixos
3.
Int J Emerg Med ; 13(1): 8, 2020 Feb 10.
Artigo em Inglês | MEDLINE | ID: mdl-32041520

RESUMO

OBJECTIVES: Emergency medicine (EM) in the Netherlands has developed rapidly and initially without central guidance. This has led to heterogeneity in current EM practice. Our aim was to quantify this heterogeneity by answering the following questions: (1) What is the current position of emergency physicians (EPs) within hospital organizations? (2) Which roles and responsibilities do EPs have across emergency departments (EDs)? METHODS: During 2018, we conducted a survey among all EM consultant bodies (CBs, n = 56) in the Netherlands. Data was analyzed using descriptive statistics. RESULTS: The response rate was 91.1%. Presence of EPs has been realized 24/7 in 23.1% of EDs. EPs were the main consultants for all ED patients in 9.8% of CBs, but never had this role in 13.7% of CBs. EPs supervised EM junior doctors in 78.5% of EDs, GPs in training in 80.0% of EDs, and junior doctors of other specialties in 41.5% of EDs. Procedures such as lumbar puncture (LP), procedural sedation and analgesia (PSA), and emergency ultrasound (US) were performed by all EPs in the CB in a range between 5.9 and 78.4%. In 36.9% of EDs, EPs did not analyze patients with presumed cardiac pathology due to a separate First Heart Aid. CONCLUSION: We conclude that there is a high degree of heterogeneity between emergency CBs in regard to the position in the hospital and the role or responsibilities in the ED. Lack of uniformity might inhibit emancipation of the profession.

4.
Eur J Emerg Med ; 26(2): 86-93, 2019 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-28817392

RESUMO

OBJECTIVE: The objective of this study was to effectuate a consensus of emergency physicians on minimum requirements for facility, diagnostic, and medical specialist availability as a first step toward minimum operational standards for 24/7 available emergency departments (EDs) in the Netherlands. PATIENTS AND METHODS: A two-part e-Delphi through online survey was performed between January 2015 and May 2016, using a panel of 20 experts in emergency medicine. The aim of part I was to reach an agreement on a list of possible ED elements and their definitions. The second part addressed the actual study objective to reach consensus on operational standards. Successive rounds were submitted to the members of the panel online using SurveyMonkey. Results of each survey round were discussed and interpreted in agreement with all authors in preparation for the next round. Reaching consensus, defined as 70% or more agreement or disagreement among the panel, on the level of all items was the endpoint of this study. RESULTS: Both parts I and II required five rounds. The dropout rate of the expert panel remained zero. The availability of 52 facilities and diagnostic functionalities and the manner in which 17 medical specialties should be available to every 24/7 ED were agreed upon by the expert panel. CONCLUSION: An expert panel agreed upon minimum operational standards for EDs in the Netherlands. These results are helpful as a first step toward a more widely supported standard for future 24/7 available EDs in the Netherlands and in addition to this other urgent care facilities.


Assuntos
Medicina de Emergência/normas , Serviço Hospitalar de Emergência/normas , Médicos/normas , Padrões de Prática Médica/normas , Consenso , Técnica Delphi , Humanos , Países Baixos , Indicadores de Qualidade em Assistência à Saúde
5.
Int J Emerg Med ; 11(1): 35, 2018 Sep 05.
Artigo em Inglês | MEDLINE | ID: mdl-31179931

RESUMO

BACKGROUND: Nationwide optimization of the emergency department (ED) landscape is being discussed in The Netherlands. The emphasis is put mostly on the number of EDs actually present at the time versus a proposed minimum number of EDs needed in the future. The predominant idea in general is that by concentrating emergency care in less EDs costs would be saved and quality of care would increase. However, structural insight into similarities as well as differences of ED characteristics is missing. This knowledge and fact interpretation is needed to provide better steering information which could contribute to strategies aiming to optimize the ED landscape. This study provides an in-depth insight in the ED landscape of The Netherlands by presentation of providing an overview of the variation in ED characteristics and by exploring associations between ED volume characteristics on one side and measures of available ED and hospital resources on the other side. Obtained insight can be a starting point towards a more well-founded future optimization policy. METHODS: This is a nationwide cross-sectional observational study. All 24/7 operational EDs meeting the IFEM definition in The Netherlands in December 2016 were identified, contacted and surveyed. Requested information was retrieved from local hospital information systems and entered into a database. Till August 1, 2017, data have been collected. RESULTS: All 87 eligible EDs in The Netherlands participated in this study (100%). All of them were hospital based. These were 8 EDs in universities (9%), 27 EDs in teaching hospitals (31%) and 52 EDs in general hospitals (60%). On average, 22,755 patients were seen per ED (range 6082-53,196). On average, 85% (range 44-99%) was referred versus 15% self-referred (range 1-56%). Further subdivision of the referred patients showed 17% 'emergency call' (range 0.5-30%), 52% by GPC (range 16-77%) and 15% other referral (range 1-52%). On average, 38% of patients per ED (range 13-76%) were hospitalized. ED treatment bays ranged from 4 to 36 and added nationally up to 1401 (mean and median of 16 per ED). The number of hospital beds behind these EDs ranged from 104 to 1339 and added up to 36,630 beds nationally (mean of 421 and median of 375 behind each ED). Information about ED nurse workforce was available for 83 of 87 EDs and ranged from 11 to 65, adding up to 2348 fulltime-equivalent nationally (mean of 28 and median of 27 per ED). We found positive and significant correlations, confirming all formulated hypotheses. The strongest correlation was seen between the number of patients seen in the ED and ED nurse workforce, followed by the number of patients seen in the ED and ED treatment bays. The other hypotheses showed less positive significant correlations. CONCLUSION: Our study shows that the ED landscape is still pluriform by numbers and specifications of individual ED locations. This study identifies associations between patient and hospitalization volumes on a national level on one side and number of ED treatment bays, ED nurse workforce capacity and available hospital beds on the other side. These findings might be useful as input for the development of an ED resource allocation framework and a more targeted optimization policy in the future.

6.
J Emerg Nurs ; 41(1): 43-51, 2015 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-24862184

RESUMO

INTRODUCTION: Pressure ulcers (PUs) are a serious health complication that develop as a result of pressure alone or pressure in combination with shearing forces. Although PUs are typically associated with older adults and chronic illness, acutely injured trauma patients may have a particular risk for the development of PUs. To prevent PU development or detect PUs in an early stage, skin assessment and PU classification should start during the ED stay, before hospital admission. The aim of this study was to assess the PU identification and classification skills of emergency nurses and emergency physicians and to evaluate the short-term effect of an educational intervention. METHODS: Twenty validated photographs were used to test identification and classification skills in a one-group pretest/posttest design, before and after an educational intervention with 54 emergency nurses and physicians. In addition, we assessed the interrater reliability of PU identification and classification. RESULTS: PU identification and classification skills and the multirater κ improved after the educational intervention. Accurate identification improved significantly from 87.7% to 95.6% (P = .000), and classification skills improved significantly from 68.5% to 79.8% (P = .000). The multirater κ for identification of PU increased from 0.63 to 0.82, and the multirater κ for classification of PUs rose from 0.43 to 0.58. The most frequently misclassified photographs were those that displayed category 1, 2, and 3 PUs, which were usually classified as more severe. DISCUSSION: This study investigated the effect of an educational intervention on the interrater reliability, PU identification, and PU classification skills of emergency nurses and physicians when tested immediately after the intervention. Study results show that interrater reliability, PU identification, and PU classification of photographs all improved, but identifying the presence of a PU in a photograph was less challenging than categorizing the same wound.


Assuntos
Competência Clínica , Enfermagem em Emergência/educação , Úlcera por Pressão/classificação , Úlcera por Pressão/enfermagem , Adulto , Idoso , Serviço Hospitalar de Emergência/organização & administração , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Diagnóstico de Enfermagem , Variações Dependentes do Observador , Fotografação , Médicos , Úlcera por Pressão/diagnóstico , Reino Unido
7.
Ned Tijdschr Geneeskd ; 158: A7128, 2014.
Artigo em Holandês | MEDLINE | ID: mdl-24867482

RESUMO

OBJECTIVE: To make an inventory of annual attendance at emergency departments (A&E) in the Netherlands. DESIGN: Inventorisation study in all Dutch A & E departments. METHOD: All A& E departments in the Netherlands that were operational for 24 hours a day, 7 days a week in December 2012 were approached (n = 93) and the following data were collected over 2012: the total number of patients, the number of hospital admissions through the A & E department, and the number of self-referrals. RESULTS: Data were obtained from 96% emergency departments (n = 89) throughout the Netherlands, including all 8 university medical centres and 28 hospitals of the association of tertiary medical teaching hospitals (STZ). In 2012 a total of 1,989,746 people attended the 89 emergency departments. The average percentage of hospital admissions from an A & E department was 32% nationwide (range: 8-54). The average percentage of self-referrals to the emergency departments was 30% nationwide (range: 3-76). CONCLUSION: The number of attendees at A & E, the admission rate through the A & E department and percentage of self-referrals in 2012 showed a range of variation nationwide. The number of people attending A & E has not increased over the last few years and is low in international terms. On average one-third of people attending A & E were admitted. In contrast with prevailing national beliefs,a minority of attendees at A &E departments were self-referrals.


Assuntos
Serviço Hospitalar de Admissão de Pacientes/estatística & dados numéricos , Serviço Hospitalar de Emergência/estatística & dados numéricos , Encaminhamento e Consulta/estatística & dados numéricos , Hospitalização , Humanos , Países Baixos
8.
Int J Emerg Med ; 6(1): 30, 2013 Jul 26.
Artigo em Inglês | MEDLINE | ID: mdl-23890388

RESUMO

BACKGROUND: The Netherlands' 3-year training in Emergency Medicine (EM) was formally approved and introduced in November 2008. To identify areas for improvement, we conducted the first evaluation of this curriculum from the residents' perspective. METHODS: A questionnaire was composed on ten aspects of the curriculum. It contained multiple-choice, open and opinion questions; answers to the latter were classified using the Likert scale. The questionnaires were mailed to all enrolled residents. RESULTS: We mailed questionnaires to all 189 enrolled residents, and 105 responded (55.6%). Although they were satisfied with their training overall, 96.2% thought it was currently too short: 18.3% desired extension to 4 years, 76.0% to 5 and 1.9% to 6 years. Nevertheless, residents expected that they would function effectively as emergency physicians (EPs) after finishing their 3-year training program. Bedside teaching was assessed positively by 35.2%. All rotations were assessed positively, with the general practice rotation seen as contributing the least to the program. According to 43.7%, supervising EPs were available for consultation; 40.7% thought that, in a clinical capacity, the EP was sufficiently present during residents' shifts. When EPs were present, 82.5% found them to be easily accessible, and 66.6% viewed them as role models. In the Emergency Medicine Departments (EDs) with a higher number of EPs employed, residents tended to perceive better supervision and were more likely to see their EPs as role models. While residents were stimulated to do research, actual support and assistance needed to be improved. CONCLUSION: Although overall, the current training program was evaluated positively, the residents identified four areas for improvement: (1) in training hospitals, trained EPs should be present more continuously for clinical supervision; (2) bedside teaching should be improved, (3) scientific research should be facilitated more and (4) the training program should be extended.

9.
Ned Tijdschr Geneeskd ; 155: A2241, 2011.
Artigo em Holandês | MEDLINE | ID: mdl-21262007

RESUMO

Acute pain is common among patients at the emergency department and is still not being treated adequately. Repeated measurement and documentation of pain is essential for adequate pain treatment. The patient determines how much analgesia is needed. Pharmacological pain relief should not be delayed during the diagnostic process, not even in cases of abdominal pain. Opioids play a central role in the treatment of acute pain. Opiophobia is not justified. Adequate pain relief started at the emergency department must be continued throughout both hospital admission and discharge to home.


Assuntos
Analgésicos/administração & dosagem , Continuidade da Assistência ao Paciente , Serviços Médicos de Emergência/normas , Manejo da Dor , Doença Aguda , Humanos , Medição da Dor , Satisfação do Paciente
10.
Dev Med Child Neurol ; 52(9): e216-21, 2010 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-20497454

RESUMO

AIM: Our aim was to study the prevalence and characteristics of constipation in children with profound multiple disabilities, as data in this area are scarce. METHOD: A cross-sectional observational study was performed in specialized day-care centres and schools in the Netherlands. The study included 152 children (81 males, 71 females; mean age 9 y 6 mo, SD 4 y 6 mo). Intellectual disability ranged from moderate (7%) to profound (52%) in all participants who also had severe motor disabilities (83% classified at Gross Motor Function Classification System level V). We collected data on defaecation characteristics, food and fluid intake, and laxative consumption using standardized bowel diaries and interviews. Constipation was defined as (1) scybalous, pebble-like, hard stools in over a quarter of defaecations in combination with a defaecation frequency of less than three times per week during a 2-week study period; (2) large stools palpable on abdominal examination; or (3) laxative use or manual disimpaction of faeces. RESULTS: Of the studied population, 57% were constipated and 55% used laxatives, 27% of whom showed symptoms of constipation. Daily intakes of water and fibre were below the required standards in 87% and 53% of participants respectively, without a proven relation to constipation. INTERPRETATION: Constipation is a common problem in children with severe disabilities. Laxative use is high but dosing is frequently inadequate to prevent symptoms.


Assuntos
Paralisia Cerebral/epidemiologia , Constipação Intestinal/epidemiologia , Criança , Creches , Estudos de Coortes , Comorbidade , Constipação Intestinal/tratamento farmacológico , Estudos Transversais , Fibras na Dieta/administração & dosagem , Discinesias/epidemiologia , Feminino , Seguimentos , Humanos , Deficiência Intelectual/epidemiologia , Entrevistas como Assunto , Laxantes/uso terapêutico , Masculino , Prontuários Médicos , Países Baixos , Prevalência , Índice de Gravidade de Doença , Água/administração & dosagem
11.
Clin Nutr ; 29(5): 617-21, 2010 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-20346547

RESUMO

BACKGROUND & AIMS: The majority of children with cerebral palsy and intellectual disability has a poor nutritional state compared with their healthy peers. Several studies have found reduced daily energy intake in this population. The hypothesis is tested that low daily energy intake correlates with poor nutritional state. METHODS: In a population-based sample of 176 children with severe generalized cerebral palsy and intellectual disability (mean age 10 years, SD 2 months; 16% GMFCS score 4; 84% GMFCS score 5) anthropometric parameters (weight, upper arm and tibia length, biceps, triceps, subscapular and suprailiacal skinfold thickness, mid upper arm circumference) were measured and dietary intake was registered. RESULTS: No correlation was found between energy intake(%EAR) and anthropometric Z-scores. Higher age, female gender, mobility, and to a lesser extent the absence of tube feeding predicted lower anthropometric Z-scores. CONCLUSIONS: In children with severe generalized cerebral palsy and intellectual disability nutritional state is not primarily determined by energy intake. Differences in energy expenditure presumably play an important role, although more research is needed to clarify the complex association between energy intake and nutritional state. Individualized nutritional care is suggested, preferably based on energy expenditure, in order to avoid malnutrition, but also overweight.


Assuntos
Paralisia Cerebral/fisiopatologia , Fenômenos Fisiológicos da Nutrição Infantil , Ingestão de Energia , Deficiência Intelectual/fisiopatologia , Estado Nutricional , Adolescente , Antropometria , Criança , Pré-Escolar , Estudos Transversais , Registros de Dieta , Metabolismo Energético , Nutrição Enteral , Feminino , Humanos , Masculino , Dobras Cutâneas , Adulto Jovem
12.
Dev Med Child Neurol ; 50(8): 625-30, 2008 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-18754902

RESUMO

This study assessed the clinical indicators and severity of dysphagia in a representative sample of children with severe generalized cerebral palsy and intellectual disability. A total of 166 children (85 males, 81 females) with Gross Motor Function Classification System Level IV or V and IQ<55 were recruited from 54 daycare centres. Mean age was 9 years 4 months (range 2 y 1 mo-19 y 1 mo). Clinically apparent presence and severity of dysphagia were assessed with a standardized mealtime observation, the Dysphagia Disorders Survey (DDS), and a dysphagia severity scale. Additional measures were parental report on feeding problems and mealtime duration. Of all 166 participating children, 1% had no dysphagia, 8% mild dysphagia, 76% moderate to severe dysphagia, and 15% profound dysphagia (receiving nil by mouth), resulting in a prevalence of dysphagia of 99%. Dysphagia was positively related to severity of motor impairment, and, surprisingly, to a higher weight for height. Low frequency of parent-reported feeding problems indicated that actual severity of dysphagia tended to be underestimated by parents. Proactive identification of dysphagia is warranted in this population, and feasible using a structured mealtime observation. Children with problems in the pharyngeal and esophageal phases, apparent on the DDS, should be referred for appropriate clinical evaluation of swallowing function.


Assuntos
Paralisia Cerebral/epidemiologia , Transtornos de Deglutição/epidemiologia , Deficiência Intelectual/epidemiologia , Paralisia Cerebral/diagnóstico , Paralisia Cerebral/fisiopatologia , Criança , Feminino , Seguimentos , Humanos , Masculino , Transtornos das Habilidades Motoras/diagnóstico , Transtornos das Habilidades Motoras/epidemiologia , Índice de Gravidade de Doença , Inquéritos e Questionários
13.
Pediatr Pulmonol ; 41(10): 937-46, 2006 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-16871627

RESUMO

During the analysis of interrupter resistance (R(int))-measurements, most authors reject post-interruption tracings based on the shape of the pressure-time and flow-time curves. However, objective criteria for rejection are lacking. We aimed to formulate explicit rejection criteria that correspond to eyeballing the curve pattern (daily practice), in order to simplify the analysis. Inter-observer agreement within and between both methods was studied. Results obtained with the developed rejection criteria were compared to those of current practice (eyeballing) using 54 measurements (807 interruptions) of children with severe neurological impairment. Inter-observer agreement on rejection was similar using the criteria or eyeballing (85.6% vs. 82.8%). Using the criteria, more individual interruptions were rejected (43.4% vs. 29.8% using eyeballing), while discarding total measurements (<5 remaining interruptions) was similar (9.2% vs. 7.4% using eyeballing). Results using only the criteria for pressure-time curves were comparable to eyeballing. Outcome values were comparable between any of the used rejection methods and not rejecting at all. In this first detailed study on rejection of post-interruption tracings, explicit rejection criteria were developed. None of the rejection methods influenced the outcome value relevantly. However, rejection criteria can contribute to the standardization of the R(int) technique and simplify decision-making in daily practice.


Assuntos
Paralisia Cerebral/fisiopatologia , Pulmão/fisiopatologia , Testes de Função Respiratória/normas , Resistência das Vias Respiratórias , Criança , Tomada de Decisões , Feminino , Fluxo Expiratório Forçado , Humanos , Masculino , Variações Dependentes do Observador , Guias de Prática Clínica como Assunto , Padrões de Referência , Reprodutibilidade dos Testes , Testes de Função Respiratória/métodos
14.
Nutrition ; 22(1): 16-22, 2006 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-16455444

RESUMO

OBJECTIVE: The need is strong for an accurate and easy-to-perform test to evaluate the nutritional state of children who have a severe generalized cerebral palsy, defined as a severe motor handicap and an intellectual disability. For that purpose, we determined the feasibility of bioelectrical impedance analysis (BIA) in these children and evaluated their nutritional state. METHODS: BIA recordings were done in 35 children who had a severe generalized cerebral palsy using a single-frequency BIA device. In addition, arm span and body weight were determined. Components of feasibility were whether the children tolerated the recording and felt comfortable and whether the recording could be performed in a reproducible way (prescribed body position and stable resistance and reactance values). All recordings were performed at specialized children's daycare centers or schools. RESULTS: One child (3%) did not tolerate the recording, whereas the remaining 34 children (71%) felt comfortable. Most children (74%) could be placed in the prescribed position, but stability of resistance values was low. Stability of resistance values was positively influenced by older age, a quiet location for the recording, feeling comfortable, and a small number of people in the room. For 29 children, we were able to calculate values for total body water and fat-free mass. Compared with age-matched reference values, these values were significantly decreased in all age groups. CONCLUSIONS: The present pilot study has demonstrated that BIA recording is a feasible nutritional assessment method in children who have severe generalized cerebral palsy. Because the test procedure was well tolerated by most children, its value for use in this specific population deserves further investigation.


Assuntos
Composição Corporal/fisiologia , Paralisia Cerebral/fisiopatologia , Transtornos da Nutrição Infantil/diagnóstico , Impedância Elétrica , Estado Nutricional , Adolescente , Fatores Etários , Água Corporal/metabolismo , Peso Corporal , Criança , Pré-Escolar , Feminino , Humanos , Masculino , Projetos Piloto , Reprodutibilidade dos Testes , Sensibilidade e Especificidade
15.
BMC Pediatr ; 5: 25, 2005 Jul 19.
Artigo em Inglês | MEDLINE | ID: mdl-16029493

RESUMO

BACKGROUND: In children with severe generalized cerebral palsy, pneumonias are a major health issue. Malnutrition, dysphagia, gastro-oesophageal reflux, impaired respiratory function and constipation are hypothesized risk factors. Still, no data are available on the relative contribution of these possible risk factors in the described population. This paper describes the initiation of a study in 194 children with severe generalized cerebral palsy, on the prevalence and on the impact of these hypothesized risk factors of recurrent pneumonias. METHODS/DESIGN: A nested case-control design with 18 months follow-up was chosen. Dysphagia, respiratory function and constipation will be assessed at baseline, malnutrition and gastro-oesophageal reflux at the end of the follow-up. The study population consists of a representative population sample of children with severe generalized cerebral palsy. Inclusion was done through care-centres in a predefined geographical area and not through hospitals. All measurements will be done on-site which sets high demands on all measurements. If these demands were not met in "gold standard" methods, other methods were chosen. Although the inclusion period was prolonged, the desired sample size of 300 children was not met. With a consent rate of 33%, nearly 10% of all eligible children in The Netherlands are included (n = 194). The study population is subtly different from the non-participants with regard to severity of dysphagia and prevalence rates of pneumonias and gastro-oesophageal reflux. DISCUSSION: Ethical issues complicated the study design. Assessment of malnutrition and gastro-oesophageal reflux at baseline was considered unethical, since these conditions can be easily treated. Therefore, we postponed these diagnostics until the end of the follow-up. In order to include a representative sample, all eligible children in a predefined geographical area had to be contacted. To increase the consent rate, on-site measurements are of first choice, but timely inclusion is jeopardized. The initiation of this first study among children with severe neurological impairment led to specific, unexpected problems. Despite small differences between participants and non-participating children, our sample is as representative as can be expected from any population-based study and will provide important, new information to bring us further towards effective interventions to prevent pneumonias in this population.


Assuntos
Pesquisa Biomédica/ética , Paralisia Cerebral/complicações , Pneumonia/etiologia , Projetos de Pesquisa , Adolescente , Estudos de Casos e Controles , Criança , Pré-Escolar , Feminino , Seguimentos , Gastroenteropatias/complicações , Humanos , Masculino , Desnutrição/complicações , Recidiva , Testes de Função Respiratória , Fatores de Risco
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