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BACKGROUND: It is unclear how many community-dwelling elderly (≥75 years) experience oral health problems (e.g. pain, dry mouth, chewing problems) and how they manage their dental care needs. This study aimed to assess self-reported oral health problems in elderly who are frail or have complex care needs, and their ability to organize dental care when reporting oral pain. METHODS: Three thousand five hundred thirty-three community-dwelling elderly participating in the "Embrace" project were asked to complete questionnaires regarding oral status and oral health problems. Frailty was assessed with the Groningen Frailty Indicator (GFI). Intermed for Elderly Self-Assessment (IM-E-SA) was used to determine complexity of care needs. Next, elderly who reported oral pain were interviewed about their oral pain complaints, their need for dental care, and their ability to organize and receive dental care. For statistical analyses Chi2-tests and the one-way ANOVA were used. RESULTS: One thousand six hundred twenty-two elderly (45.9%) completed the questionnaires. Dry mouth (11.7%) and oral pain (6.2%) were most frequently reported. Among the elderly reporting oral pain, most were registered at a local dentist and could go there when needed (84.3%). Robust elderly visited the dentist independently (87%), frail (55.6%) and complex (26.9%) elderly more often required assistance from caregivers. CONCLUSIONS: Dry mouth and oral pain are most reported oral health problems among community-dwelling elderly. Elderly with complex care needs report most oral health problems. In case an elderly seeks dental treatment to alleviate an oral pain complaint, most elderly in this study were able to organize dental care and transport to the dentist. Frail and complex elderly often need assistance from caregivers to visit the dentist. Therefore caretakers should keep in mind that when frailty progresses, visiting a dentist may become more and more difficult and the risk for poor oral health increases.
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Cuidado Dental para Ancianos/estadística & datos numéricos , Atención Odontológica/estadística & datos numéricos , Salud Bucal , Anciano , Anciano de 80 o más Años , Estudios Transversales , Encuestas de Salud Bucal , Femenino , Anciano Frágil , Evaluación Geriátrica , Servicios de Salud para Ancianos , Humanos , Vida Independiente , AutoinformeRESUMEN
OBJECTIVES: Twin pregnancy complicated by selective fetal growth restriction (sFGR) is associated with increased perinatal mortality and morbidity. Inconsistencies in the diagnostic criteria for sFGR employed in existing studies hinder the ability to compare or combine their findings. It is therefore challenging to establish robust evidence-based management or monitoring pathways for these pregnancies. The main aim of this study was to determine, by expert consensus using a Delphi procedure, the key diagnostic features of and the essential reporting parameters in sFGR. METHODS: A Delphi process was conducted among an international panel of experts in sFGR in twin pregnancy. Panel members were provided with a list of literature-based parameters for diagnosing sFGR and were asked to rate their importance on a five-point Likert scale. Parameters were described as solitary (sufficient to diagnose sFGR, even if all other parameters are normal) or contributory (those that require other abnormal parameter(s) to be present for the diagnosis of sFGR). Consensus was sought to determine the cut-off values for accepted parameters, as well as parameters used in the monitoring, management and assessment of outcome of twin pregnancy complicated by sFGR. The questions were presented in two separate categories according to chorionicity. RESULTS: A total of 72 experts were approached, of whom 60 agreed to participate and entered the first round; 48 (80%) completed all four rounds. For the definition of sFGR irrespective of chorionicity, one solitary parameter (estimated fetal weight (EFW) of one twin < 3rd centile) was agreed. For monochorionic twin pregnancy, at least two out of four contributory parameters (EFW of one twin < 10th centile, abdominal circumference of one twin < 10th centile, EFW discordance of ≥ 25%, and umbilical artery pulsatility index of the smaller twin > 95th centile) were agreed. For sFGR in dichorionic twin pregnancy, at least two out of three contributory parameters (EFW of one twin < 10th centile, EFW discordance of ≥ 25%, and umbilical artery pulsatility index of the smaller twin > 95th centile) were agreed. CONCLUSIONS: Consensus-based diagnostic features of sFGR in both monochorionic and dichorionic twin pregnancies, as well as cut-off values for the parameters involved, were agreed upon by a panel of experts. Future studies are needed to validate these diagnostic features before they can be used in clinical trials of interventions. Copyright © 2018 ISUOG. Published by John Wiley & Sons Ltd.
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Retardo del Crecimiento Fetal/diagnóstico , Embarazo Gemelar , Diagnóstico Prenatal , Gemelos , Consenso , Técnica Delphi , Femenino , Humanos , Guías de Práctica Clínica como Asunto , Embarazo , Flujo Pulsátil , Ultrasonografía Prenatal , Arterias Umbilicales/diagnóstico por imagenRESUMEN
OBJECTIVE: To determine, by expert consensus using a Delphi procedure, a minimum reporting set of study variables for fetal growth restriction (FGR) research studies. METHODS: A panel of experts, identified based on their publication record as lead or senior author of studies on FGR, was asked to select a set of essential reporting study parameters from a literature-based list of variables, utilizing the Delphi consensus methodology. Responses were collected in four consecutive rounds by online questionnaires presented to the panelists through a unique token-secured link for each round. The experts were asked to rate the importance of each parameter on a five-point Likert scale. Variables were selected in the three first rounds based on a 70% threshold for agreement on the Likert-scale scoring. In the final round, retained parameters were categorized as essential (to be reported in all FGR studies) or recommended (important but not mandatory). RESULTS: Of the 100 invited experts, 87 agreed to participate and of these 62 (71%) completed all four rounds. Agreement was reached for 16 essential and 30 recommended parameters including maternal characteristics, prenatal investigations, prenatal management and pregnancy/neonatal outcomes. Essential parameters included hypertensive complication in the current pregnancy, smoking, parity, maternal age, fetal abdominal circumference, estimated fetal weight, umbilical artery Doppler (pulsatility index and end-diastolic flow), fetal middle cerebral artery Doppler, indications for intervention, pregnancy outcome (live birth, stillbirth or neonatal death), gestational age at delivery, birth weight, birth-weight centile, mode of delivery and 5-min Apgar score. CONCLUSIONS: We present a list of essential and recommended parameters that characterize FGR independent of study hypotheses. Uniform reporting of these variables in prospective clinical research is expected to improve data quality, study consistency and ultimately our understanding of FGR. Copyright © 2018 ISUOG. Published by John Wiley & Sons Ltd.
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Exactitud de los Datos , Retardo del Crecimiento Fetal , Proyectos de Investigación/normas , Consenso , Técnica Delphi , Femenino , Humanos , EmbarazoRESUMEN
PURPOSE: Improved survival rates from cancer have increased the need to understand the health-related problems of cancer treatment. We aimed to develop and validate the "Cancer Survivor Core Set" representing the most relevant health-related problems in adult cancer survivors using the International Classification of Functioning, Disability, and Health (ICF). METHODS: First, a Delphi study was conducted to select ICF categories representing the most relevant health-related problems. There were three Dutch expert panels, one each for lung, colorectal, and breast cancer. Each panel comprised lay experts and professionals. The experts reached within- and between-panel consensus in two rounds (≥70 % agreement). Second, a validation study was performed. Generic cancer survivorship questionnaires assessing health-related problems or quality of life among cancer survivors were selected. Items of selected questionnaires were linked to the best-fitting ICF category and to the selected ICF categories from the Delphi study, respectively. RESULTS: In total, 101 experts were included, of which 76 participated in both rounds, reaching consensus on 18 ICF categories. The Distress Thermometer and Problem List, the Impact of Cancer (v2), and the Quality of Life in Adult Cancer Survivors questionnaires were selected for the validation study, which led to the inclusion of one additional ICF category. CONCLUSIONS: The developed Cancer Survivor Core Set consisted of 19 ICF categories representing the most relevant health-related problems in adult cancer survivors: five from the "body functions and structures" component, eight from the "activities and participation" component, and six from the "environmental factors" component. HIGHLIGHTS: ⢠Many adult cancer survivors have persistent health-related problems. ⢠The Cancer Survivor Core Set was developed using the Delphi method. ⢠The patients' perspectives were prioritized in this Delphi study ⢠Content validity was confirmed by validated cancer survivorship questionnaires. ⢠The Cancer Survivor Core Set may help optimize care for cancer survivors.
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Evaluación de la Discapacidad , Neoplasias/complicaciones , Calidad de Vida/psicología , Adulto , Femenino , Humanos , Neoplasias/mortalidad , Encuestas y Cuestionarios , Tasa de Supervivencia , Sobrevivientes , Adulto JovenRESUMEN
OBJECTIVE: To assess oral status and self-reported oral health in community-living elderly and to determine differences between relevant subgroups of oral status (remaining teeth, edentulous, implant-retained overdentures) and case complexity (robust, frail, complex care needs). SUBJECTS AND METHODS: In this cross-sectional descriptive study, 1325 Dutch community-living elderly (≥75 years of age) were asked to complete validated questionnaires on frailty, activities of daily living (ADL), complexity of care needs, and QoL. Data on oral status, self-reported oral health, dental care, general health, and medication use were assessed. Differences between relevant subgroups were determined. RESULTS: Data of 1026 (77%) elderly (median 80 years, IQR 77-84) were analyzed: 39% had remaining teeth, 51% were edentulous, and 10% had implant-supported overdentures. Elderly with complex care needs (n = 225, 22%) and frail elderly (n = 217, 21%) were more often edentulous and reported more oral problems than robust elderly (n = 584, 57%). Elderly persons with remaining teeth were less frail, had better QoL and ADL, and used fewer medicines than edentulous elderly. Elderly with implant-supported overdentures performed better on frailty and QoL than edentulous elderly with conventional dentures. CONCLUSION: Community-living elderly commonly suffer from oral health problems, in particular elderly with complex care needs. QoL, ADL, and general health are higher among community-living elderly with remaining teeth and implant-supported overdentures than in edentulous elderly.
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Anciano Frágil/estadística & datos numéricos , Fragilidad/etiología , Estado de Salud , Boca Edéntula/complicaciones , Salud Bucal/estadística & datos numéricos , Calidad de Vida , Anciano , Anciano de 80 o más Años , Estudios Transversales , Femenino , Fragilidad/epidemiología , Evaluación Geriátrica , Indicadores de Salud , Humanos , Vida Independiente , Masculino , Boca Edéntula/epidemiología , Países Bajos/epidemiología , Factores de Riesgo , AutoinformeRESUMEN
OBJECTIVE: To determine, by expert consensus, a definition for early and late fetal growth restriction (FGR) through a Delphi procedure. METHOD: A Delphi survey was conducted among an international panel of experts on FGR. Panel members were provided with 18 literature-based parameters for defining FGR and were asked to rate the importance of these parameters for the diagnosis of both early and late FGR on a 5-point Likert scale. Parameters were described as solitary parameters (parameters that are sufficient to diagnose FGR, even if all other parameters are normal) and contributory parameters (parameters that require other abnormal parameter(s) to be present for the diagnosis of FGR). Consensus was sought to determine the cut-off values for accepted parameters. RESULTS: A total of 106 experts were approached, of whom 56 agreed to participate and entered the first round, and 45 (80%) completed all four rounds. For early FGR (< 32 weeks), three solitary parameters (abdominal circumference (AC) < 3(rd) centile, estimated fetal weight (EFW) < 3(rd) centile and absent end-diastolic flow in the umbilical artery (UA)) and four contributory parameters (AC or EFW < 10(th) centile combined with a pulsatility index (PI) > 95(th) centile in either the UA or uterine artery) were agreed upon. For late FGR (≥ 32 weeks), two solitary parameters (AC or EFW < 3(rd) centile) and four contributory parameters (EFW or AC < 10(th) centile, AC or EFW crossing centiles by > two quartiles on growth charts and cerebroplacental ratio < 5(th) centile or UA-PI > 95(th) centile) were defined. CONCLUSION: Consensus-based definitions for early and late FGR, as well as cut-off values for parameters involved, were agreed upon by a panel of experts. Copyright © 2016 ISUOG. Published by John Wiley & Sons Ltd.
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Consenso , Técnica Delphi , Retardo del Crecimiento Fetal/diagnóstico , Ultrasonografía Prenatal/métodos , Arteria Uterina/embriología , Velocidad del Flujo Sanguíneo , Femenino , Retardo del Crecimiento Fetal/clasificación , Peso Fetal , Edad Gestacional , Gráficos de Crecimiento , Humanos , Embarazo , Flujo Pulsátil , Sociedades Médicas , Arteria Uterina/fisiopatologíaRESUMEN
UNLABELLED: Ongoing growth in health care expenditures and changing patterns in the demand for health care challenge societies worldwide. The Chronic Care Model (CCM), combined with classification for care needs based on Kaiser Permanente (KP) Triangle, may offer a suitable framework for change. The aim of the present study is to investigate the effectiveness of Embrace, a population-based model for integrated elderly care, regarding patient outcomes, service use, costs, and quality of care. METHODS: The CCM and the KP Triangle were translated to the Dutch setting and adapted to the full elderly population living in the community. A randomized controlled trial with balanced allocation was designed to test the effectiveness of Embrace. Eligible elderly persons are 75 years and older and enrolled with one of the participating general practitioner practices. Based on scores on the INTERMED-Elderly Self-Assessment and Groningen Frailty Indicator, participants will be stratified into one of three strata: (A) robust; (B) frail; and (C) complex care needs. Next, participants will be randomized per stratum to Embrace or care as usual. Embrace encompasses an Elderly Care Team per general practitioner practice, an Electronic Elderly Record System, decision support instruments, and a self-management support and prevention program - combined with care and support intensity levels increasing from stratum A to stratum C. Primary outcome variables are patient outcomes, service use, costs, and quality of care. Data will be collected at baseline, twelve months after starting date, and during the intervention period. DISCUSSION: This study could provide evidence for the effectiveness of Embrace.
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Prestación Integrada de Atención de Salud/organización & administración , Servicios de Salud para Ancianos/organización & administración , Atención al Paciente/normas , Calidad de la Atención de Salud , Ensayos Clínicos Controlados Aleatorios como Asunto/métodos , Anciano , Anciano de 80 o más Años , Cuidadores , Femenino , Anciano Frágil , Humanos , Masculino , Países Bajos , Atención al Paciente/economía , Resultado del TratamientoRESUMEN
BACKGROUND: Evidence on the progress of disease severity in multiple sclerosis (MS) is generally limited in scope. OBJECTIVES: To examine the course of a broad spectrum of MS-related disabilities and quality of life (QOL) in relation to disease severity, and responsiveness of the Multiple Sclerosis Impact Profile (MSIP). METHODS: The mortality rate was calculated after checking the national population register for vital status of the initial cohort. We performed a longitudinal study among 245 patients with MS attending the Groningen MS Center in the Netherlands. We assessed these patients in 2004 and 2009 using a postal survey including the MSIP to evaluate disabilities, the World Health Organization Quality of Life-Abbreviation version (WHOQOL-BREF) to evaluate QOL, and the ambulation question of the Expanded Disability Status Scale (EDSS) to evaluate disease severity. Responsiveness of the MSIP was estimated using standardized response mean (SRM). RESULTS: Increase of disability in the MSIP disability domains and loss of QOL were most prevalent and pronounced in patients with EDSS 0 to < 4.5 in 2004. MSIP and QOL scores were remarkably stable in the higher disease severity groups. Mortality rates were highest (24%) in patients with EDSS ≥ 7 to < 10 in 2004. SRM indices for the MSIP ranged between 0.26 and 0.56. CONCLUSIONS: Prominent increases in multiple aspects of disability and loss of QOL occur especially in the early stages in MS. Health care interventions may lead to health and QOL gains, in particular when offered to patients in the first stage of the MS process. Responsiveness was sufficient for nine of the 11 MSIP domains.
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Evaluación de la Discapacidad , Esclerosis Múltiple/diagnóstico , Calidad de Vida , Perfil de Impacto de Enfermedad , Adulto , Anciano , Anciano de 80 o más Años , Progresión de la Enfermedad , Femenino , Estudios de Seguimiento , Humanos , Estudios Longitudinales , Masculino , Persona de Mediana Edad , Esclerosis Múltiple/mortalidad , Esclerosis Múltiple/fisiopatología , Esclerosis Múltiple/psicología , Países Bajos/epidemiología , Valor Predictivo de las Pruebas , Pronóstico , Índice de Severidad de la Enfermedad , Factores de Tiempo , Adulto JovenRESUMEN
OBJECTIVE: There is an ongoing drive to measure and improve quality of care. Donabedians' quality framework with structure, process and outcome domains provides a useful hold to examine quality of care. The aim of this study was to address the effect of an intervention in hospital structure (integration of three units into one) with the purpose of improving processes (increase meeting, cooperation and communication between professionals and patients) and its effect on the outcome (cancer patient satisfaction). DESIGN: Pre-test-post-test. SETTING: University Medical Center Utrecht, The Netherlands, Department of Medical Oncology. PARTICIPANTS: Cancer patients (n = 174, n = 97). INTERVENTIONS: Physical integration by bringing separately located units (outpatient clinic, day-care clinic, clinical ward) together in one wing of the hospital and adjustments in communication and coordination structures. MAIN OUTCOME MEASURE: Patient satisfaction questionnaire. RESULTS: Satisfaction with care improved for six scales (27%) after integration. Effect sizes (ESs) ranged from 0.36 to 0.80, indicating a small to moderate effect. The most important improvement was found at the day-care clinic on aspects like 'the degree in which the nurses were informed about a patients situation', 'privacy', 'interior design', 'quality of hospital equipment', 'sanitary supplies' and 'waiting periods'. With regard to continuity and coordination of care, satisfaction increased for five items (28% of items concerning continuity and coordination of care). ESs ranged from 0.42 to 0.75. CONCLUSIONS: Integration of three oncology units into one unit had a positive impact on care delivery processes and resulted in improved patient satisfaction concerning care and treatment.
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Centros Médicos Académicos/organización & administración , Oncología Médica/organización & administración , Innovación Organizacional , Satisfacción del Paciente , Garantía de la Calidad de Atención de Salud/organización & administración , Adulto , Anciano , Anciano de 80 o más Años , Continuidad de la Atención al Paciente/organización & administración , Escolaridad , Femenino , Encuestas de Atención de la Salud , Humanos , Masculino , Persona de Mediana Edad , Países BajosRESUMEN
BACKGROUND: To improve quality of care for cancer patients, it is important to have an insight on the patient's view on health care and on their specific wishes, needs and preferences, without restriction and without influence of researchers and health care providers. The aim of this study was to develop a questionnaire assessing medical oncology patients' preferences for health care based on their own input. PATIENTS AND METHODS: Items were generated using 10 focus group interviews with 51 cancer patients. A preliminary questionnaire was handed out to 681 patients of seven Dutch departments of medical oncology. Explorative factor analysis was carried out on the 386 returned questionnaires (response 57%). RESULTS: Focus group interviews resulted in a preliminary questionnaire containing 136 items. Explorative factor analysis resulted in a definitive questionnaire containing 123 items (21 scales and eight single items). Patients rated expertise, safety, performance and attitude of physicians and nurses as the most important issues in cancer care. CONCLUSION: This questionnaire may be used to assess preferences of cancer patients and to come to a tailored approach of health care that meets patients' wishes and needs.
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Encuestas de Atención de la Salud , Oncología Médica , Psicometría/instrumentación , Calidad de la Atención de Salud , Encuestas y Cuestionarios , Distribución por Edad , Actitud del Personal de Salud , Interpretación Estadística de Datos , Análisis Factorial , Femenino , Grupos Focales , Humanos , Entrevistas como Asunto , Masculino , Evaluación de Necesidades , Países Bajos , Satisfacción del Paciente , Selección de PacienteRESUMEN
BACKGROUND: Older adults and care professionals advocate a more integrated and proactive care approach. This can be achieved by proactive outpatient assessment services that offer comprehensive geriatric assessments to better understand the needs of older adults and deliver person-centered and preventive care. However, the effects of these services are inconsistent. Increased involvement of the older adult during the assessment service could increase the effects on older adult's well-being. METHODS: We studied the effect of an assessment service (Sage-atAge) for community-dwelling frail adults aged ≥65 years. After studying the local experiences, this service was adapted with the aim to increase participant involvement through individual goal setting and using motivational interviewing techniques by health-care professionals (Sage-atAge+). Within Sage-atAge+, when finishing the assessment, a "goal card" was written together with the older adult: a summary of the assessment, including goals and recommendations. We measured well-being with a composite endpoint consisting of health, psychological, quality of life, and social components. With regression analysis, we compared the effects of the Sage-atAge and Sage-atAge+ services on the well-being of participants. RESULTS: In total, 453 older adults were eligible for analysis with a mean age of 77 (± 7.0) years of whom 62% were women. We found no significant difference in the change in well-being scores between the Sage-atAge+ service and the original Sage-atAge service (B, 0.037; 95% CI, -0.188 to 0.263). Also, no change in well-being scores was found even when selecting only those participants for the Sage-atAge+ group who received a goal card. CONCLUSION: Efforts to increase the involvement of older adults through motivational interviewing and goal setting showed no additional effect on well-being. Further research is needed to explore the relationship between increased participant involvement and well-being to further develop person-centered care for older adults.
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Anciano Frágil/psicología , Evaluación Geriátrica , Vida Independiente/psicología , Anciano , Anciano de 80 o más Años , Femenino , Personal de Salud , Humanos , Masculino , Calidad de VidaRESUMEN
OBJECTIVE: To examine the stability and relative validity of the Multiple Sclerosis Impact Profile (MSIP) in criterion-related groups. The MSIP is a disease-targeted health impact measure based on a selection of International Classification of Functioning, Disability and Health (ICF) aspects selected by 98 patients and medical and non-medical health professionals. METHOD: Data were obtained from a postal survey of 377 individuals with Multiple Sclerosis (MS) attending the MS centre of the University Medical Center Groningen (UH) and 153 subjects from the MS patients' association. Stability was tested with t-tests for paired samples and intraclass correlation coefficients for repeated measures in a sample of 251 individuals from the UH sample. The Relative Validity (RV) was estimated using the Short Form Questionnaire (SF-36), the World Health Organization Quality of Life-BREF (WHOQOL-BREF), the Disability and Impact Profile (DIP), the Impact on Autonomy Questionnaire (IPAQ) and the Groningen Activity Restriction Scale (GARS). RESULTS: These indicate that the MSIP is a stable measure in time. MSIP scales showed satisfactory and strong RV. In general, the domain-specific activities and participation measures (GARS and IPAQ) performed equally or slightly better than the comparable MSIP-scales, while the MSIP performed better than the multidimensional health impact measures (SF-36, DIP and WHOQOL-BREF). CONCLUSION: The MSIP demonstrated good stability and RV compared to generic health impact and domain-specific measures.
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Actividades Cotidianas , Esclerosis Múltiple/psicología , Perfil de Impacto de Enfermedad , Adulto , Anciano , Anciano de 80 o más Años , Estudios Transversales , Evaluación de la Discapacidad , Femenino , Humanos , Masculino , Salud Mental , Persona de Mediana Edad , Esclerosis Múltiple/fisiopatología , Países Bajos , Psicometría , Reproducibilidad de los Resultados , Encuestas y CuestionariosRESUMEN
OBJECTIVE: To examine the impact of Embrace (Dutch: SamenOud), a new primary care model for community-living people aged over 75 years on perceived quality of care. DESIGN: Randomized controlled trial in 15 general practices in the East Groningen region of the Netherlands. METHOD: In the period January 2012-March 2013, 1456 general practice patients aged 75 years and older were stratified on the basis of self-reporting into 3 risk profiles: 'robust', 'frail' and 'complex care needs', and then randomized to the intervention or the control arm. Intervention consisted of care and support from an elderly-care team consisting of a specialist in Gerontology, a district nurse, and a social worker. Intensity and duration of the care and support were dependent on risk profile. The primary outcome measure was quality of care as reported by participants; the secondary outcome measure was the extent of implementation as reported by the caregivers. RESULTS: The level of perceived quality of care after 12 months was slightly higher in the intervention arm than in the control arm, but the effect size was quite small. The difference was significant in elderly people with the risk profiles 'frail' and 'complex care needs'; robust elderly people did not experience a significant difference. The caregivers reported increased implementation of integrated care (effect size 0.71, that means average). CONCLUSION: Embrace slightly improved the perceived quality of care, particularly for elderly people with complex care needs for whom case management was organised. Caregivers judged implementation of integrated care to be greatly improved, though there was still room for further improvement. Further research should be carried out into the effectiveness of integrated primary care for the elderly on health, service-use and healthcare costs.
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BACKGROUND: Understanding of the consequences of a neuromuscular disease (NMD) can improve when a valid sample of disease-specific categories based on the International Classification of Functioning, Disabilities, and Health (ICF) is available. OBJECTIVE: To examine the content validity of the initial ICF Core Set for neuromuscular diseases (NMDs). The initial ICF Core Set was developed for three chronic neurological diseases. DESIGN: A qualitative method. METHODS: To examine the content validity of the initial ICF Core Set for NMD, concepts in established disease-specific health-related Quality of Life Questionnaires (HRQOL) were compared with ICF categories. Next, the selected ICF categories were linked to the ICF categories in the initial ICF Core Set. RESULTS: All concepts in the HRQOL questionnaires, except one body function concept, were covered by the initial ICF Core Set. However, the NMD Core Set reflects a broader scope concerning health problems than the concepts in the HRQOL questionnaires do, especially concerning the "Participation" and "Environmental Factors" components. CONCLUSION: The NMD Core Set, as well as a measurement based on this Core Set, can contribute to a better understanding of the consequences of NMDs and can also serve as a basis for clinical practice, research, social security systems, and educational programs. CLINICAL REHABILITATION IMPACT: The newly developed NMD Core Set can be a basis for enhancing the development of rehabilitation interventions and improving overall health care for patients with a NMD.
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Clasificación Internacional de Enfermedades , Enfermedades Neuromusculares/clasificación , Actividades Cotidianas , Evaluación de la Discapacidad , Humanos , Investigación Cualitativa , Calidad de Vida , Encuestas y CuestionariosRESUMEN
OBJECTIVE: People with Multiple Sclerosis (MS) experience lower levels of quality of life (QOL) than people from the general population. We examined the relative impact of MS-related disabilities on QOL. METHOD: Data were obtained from a sample of 530 patients who completed the Multiple Sclerosis Impact Profile (MSIP), a disability measure based on the International Classification of Functioning, Disabilities and Health (ICF) and two generic health-related QOL measures, the Medical Outcome study Short Form Questionnaire (SF-36) and the World Health Organization Quality Of Life-BREF (WHOQOL-BREF). The impact of disabilities on QOL was estimated using hierarchical multiple regression analyses after controlling for the clinical course of MS. RESULTS: Disabilities contributed to a unique and substantial extent to QOL variance. "Impairments in mental functions" was the most important QOL predictor. "Fatigue" showed the highest prevalence and severity scores, while the impact on QOL was limited. The estimated impact on QOL appeared to be dependent on the applied QOL measure: the WHOQOL-BREF was sensitive to disabilities related to all four ICF components, while the SF-36 was only sensitive to disabilities belonging to the 'body functions' and 'activities' components. CONCLUSION: Treatment programmes should target impairments in cognitive functioning, emotional functioning and sleep. Interventions are best evaluated using the WHOQOL-BREF.
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Personas con Discapacidad/psicología , Estado de Salud , Esclerosis Múltiple/psicología , Calidad de Vida , Actividades Cotidianas , Adulto , Evaluación de la Discapacidad , Personas con Discapacidad/estadística & datos numéricos , Femenino , Humanos , Masculino , Persona de Mediana Edad , Esclerosis Múltiple/epidemiología , Esclerosis Múltiple/fisiopatología , Prevalencia , Análisis de RegresiónRESUMEN
OBJECTIVES: The current review evaluates the safety and efficacy of desmopressin in patients with multiple sclerosis (MS) who suffer from both daytime and nocturnal voiding frequency and from incontinence. MATERIALS AND METHODS: A literature search was carried out looking for studies published between 1990 and 2003 which evaluated desmopressin in MS patients with bladder dysfunction. RESULTS: The grand total mean effect sizes show the following estimates of clinical relevant differences: desmopressin has a moderate effect on the number of voids during the day or during the night over a period of 6 h after taking the drug. A large effect associated with the use of desmopressin was detected by the mean difference in urine volume (ml) in 6 h. A small effect was detected in the mean 24-h urine volume. Serum sodium levels were combined with plasma osmolality in some studies and were found to be not significantly affected by desmopressin treatment.