Geke Dijkstra

Prevalence of Chronic Health Conditions in Children With Intellectual Disability: A Systematic Literature Review

A systematic review of the prevalence rates of chronic health conditions in populations of children with intellectual disability was provided. We identified 2,994 relevant studies by searching Medline, Cinahl, and PsycINFO databases from 1996 to 2008. We included the 31 studies that had sufficient methodological quality. The 6 most prevalent chronic health conditions in children with intellectual disability were epilepsy (22.0/100), cerebral palsy (19.8/100), any anxiety disorder (17.1/100), oppositional defiant disorder (12.4/100), Down syndrome (11.0/100), and autistic disorder (10.1/100). The reported prevalence rates of chronic health conditions in this population was much higher than in the general population. However, both the number of studies that were included and the number of chronic health conditions they reported about were limited. There is an urgent need for better evidence on the prevalence of chronic health conditions among children with intellectual disability.

Emotional and behavioural problems in adolescents with intellectual disability with and without chronic diseases

BACKGROUND Adolescents with intellectual disability (ID) (ID-adolescents) and adolescents with chronic diseases are both more likely to have emotional and behavioural problems. The aim of this study was to assess the association between chronic diseases in ID-adolescents and emotional and behavioural problems in a large school-based sample. METHODS We obtained data on 1044 ID-adolescents, aged 12-18 years, attending secondary schools in the Netherlands. Parents of the adolescents completed the Dutch version of the Strengths and Difficulties Questionnaire and questions about chronic diseases in their child and about the background of the child. RESULTS Prevalence rates of emotional and behavioural problems were generally high in ID-adolescents with chronic diseases (45%), compared with ID-adolescents without chronic diseases (17%). The likelihood of emotional and behavioural problems was high in ID-adolescents with two [odds ratios (OR) 4.47; 95% CI: 2.97-6.74] or more than two chronic diseases (OR 8.01; 95% CI: 5.18-12.39) and for ID-adolescents with mental chronic diseases (OR 4.56; 95% CI: 3.21-6.47). Also ID-adolescents with somatic chronic diseases had a high likelihood of emotional and behavioural problems (OR 1.99; 95% CI: 1.33-2.99), in particular in the combination of somatic and mental chronic diseases (OR 5.16; 95% CI: 3.46-7.71). CONCLUSIONS The current study showed that chronic diseases in ID-adolescents, in particular mental chronic diseases, largely increase the likelihood of emotional and behavioural problems. This should be taken in the provision and planning of care for ID-adolescents.

Prevalence of chronic diseases in adolescents with intellectual disability

Valid community-based data on the prevalence of chronic diseases in adolescents (12-18 years) with intellectual disability (ID-adolescents) are scarce. The aim of this study was to assess the prevalence rates and the nature of chronic diseases in a population of ID-adolescents and to compare them with the rates among adolescents in the general population. Therefore, we obtained data on 1083 ID-adolescents attending secondary schools, day care centers or living in residential centers fully covering one region of The Netherlands. Parents of the adolescents completed a questionnaire about the occurrence of chronic diseases in their child during the previous 12 months and about background characteristics. The questionnaire was derived from the Dutch National Permanent Survey on Living Conditions questionnaire periodically administered in a representative population sample (n approximately = 10,000). Prevalence rates of chronic diseases in ID-adolescents were compared with those in adolescents in the Dutch general population. Among ID-adolescents, high prevalence rates of a wide range of chronic diseases were found. The five most prevalent were: ADHD (21.1%), PDD-NOS (14.0%), dyslexia (13.9%), migraine or chronic headache (12.7%), and autistic disorder (10.9%). These prevalence rates were all higher (p<0.05) than among adolescents in the general population. Of all ID-adolescents, 62.9% was reported to have at least one chronic disease. The burden of chronic diseases among ID-adolescents is very high, showing a high need for adequate care. These high prevalence rates should alert policymakers and clinicians regarding the widespread of chronic diseases among ID-adolescents.

Pervasive developmental disorder behavior in adolescents with intellectual disability and co-occurring somatic chronic diseases

Evidence on the association between somatic chronic diseases in ID-adolescents and the full range of pervasive developmental disorder behavior (PDD behavior) is scarce. The aim of the present study is to assess the association between somatic chronic diseases in ID-adolescents and mild PDD behavior. We obtained data on 1044 ID-adolescents, aged 12-18, attending secondary schools in the Netherlands. Parents of the adolescents completed the Dutch version of the Childrens Social Behavior Questionnaire (CSBQ) parent version, covering a wide range of PDD behavior, and questions about chronic diseases and background characteristics of their child. ID-adolescents with somatic chronic diseases showed more PDD behavior, in particular milder forms, than their peers without chronic diseases. In addition, ID-adolescents with somatic chronic diseases in combination with pervasive development disorders (PDD) and attention deficit hyperactivity disorder (ADHD) also showed more PDD behavior than their peers with only PDD/ADHD. Clinicians should be extra alert on PDD behavior, in particular the milder forms, in ID-adolescents when somatic chronic diseases are present. However, to strengthen our results about the relationship between somatic chronic diseases in ID-adolescents and PDD behavior studies are needed using both the CSBQ and standardized diagnostic instruments.

Exploration of the difference in incidence of renal replacement therapy between Flanders and the Netherlands--investigation of explanatory variables.

AIM This study investigates the difference in the incidence of renal replacement therapy (RRT) between Flanders and the Netherlands and possible explanations for this difference. METHODS End-stage renal disease incidence data were obtained from the European Renal Association-European Dialysis and Transplant Association (ERA-EDTA). Additional sources were the National Institute of Statistics (NIS), the Central Bureau of Statistics (CBS), the Organisation for Economic Cooperation and Development (OECD) health data and the WHO Health For All database (WHO-HFA). RESULTS There is remarkable difference in incidence rate of RRT between Flanders and the Netherlands, with a higher rate in Flanders. This difference is already present in patients aged 45-64 years and increases with age, being >2-fold higher in subjects of ≥ 75 years. With respect to the renal diagnoses leading to need for RRT, a higher share of especially diabetes mellitus type 2 and renovascular disease was observed in Flanders. Remarkably, the difference in incidence rate of RRT is not associated with a difference in survival on RRT, not even in the elderly, arguing against a restricted access to RRT in the Netherlands. In the general population, the expected number of healthy life years at birth is lower in Belgium than in the Netherlands, and in Belgium, the hospital discharge rates for diabetes, acute myocardial infarction and cerebrovascular accident and the number of coronary bypass procedures and percutaneous coronary interventions per capitum is higher, as is the prevalence of obesity. CONCLUSION Our data do not support the assumption that the differences in RRT incidence in the elderly between Flanders and the Netherlands are due to a more restricted access to RRT in the Netherlands but may be due to differences in underlying comorbidity and life style between the two populations.

The first use of dementia care mapping in the care for older people with intellectual disability: A process analysis according to the RE-AIM framework

ABSTRACT Introduction: The aging of the population with intellectual disability (ID), with associated conseqences as dementia, creates a need for evidence-based methods to support staff. Dementia Care Mapping (DCM) is perceived to be valuable in dementia care and promising in ID-care. The aim of this study was to evaluate the process of the first use of DCM in ID-care. Methods: DCM was used among older people with ID and care-staff in 12 group homes of six organisations. We obtained data on the first use of DCM in ID-care via focus-group discussions and face-to-face interviews with: care-staff (N = 24), managers (N = 10), behavioural specialists (N = 7), DCM-ID mappers (N = 12), and DCM-trainers (N = 2). We used the RE-AIM framework for a thematic process-analysis. Results: All available staff (94%) participated in DCM (reach). Regarding its efficacy, staff considered DCM valuable; it provided them new knowledge and skills. Participants intended to adopt DCM, by continuing and expanding its use in their organisations. DCM was implemented as intended, and strictly monitored and supported by DCM-trainers. As for maintenance, DCM was further tailored to ID-care and a version for individual ID-care settings was developed, both as standards for international use. To sustain the use of DCM in ID-care, a multidisciplinary, interorganisational learning network was established. Conclusion: DCM tailored to ID-care proved to be an appropriate and valuable method to support staff in their work with aging clients, and it allows for further implementation. This is a first step to obtain an evidence-based method in ID-care for older clients.

Erfelijkheidsonderzoek bij plotselinge dood

SamenvattingBakker RH, Van der Werf C, Van Weert HCPM, Das K, Dijkstra GJ, Birnie E, Van Langen IM. Erfelijkheidsonderzoek bij plotselinge dood. Huisarts Wet 2013;56(8):370-5.AchtergrondDe plotselinge dood van personen jonger dan 45 jaar is vaak het gevolg van een erfelijke hartziekte. Daarom wordt aanbevolen om obductie en familieonderzoek te laten verrichten. In Nederland gebeurt dat echter onvoldoende. Dit onderzoek had tot doel de factoren te identificeren die het voorkeursbeleid in de weg staan.MethodeWe organiseerden vier focusgroepsbijeenkomsten met steeds 7-9 huisartsen en/of gemeentelijk lijkschouwers. De deelnemers bespraken de knelpunten die zij ondervonden op verschillende momenten in de procedure: de verklaring van natuurlijke dood, het verzoek aan de familie om klinische obductie en (voor huisartsen) het verwijzen van familieleden voor cardiogenetisch onderzoek. We vroegen de deelnemers ook naar eventuele oplossingen voor deze knelpunten.ResultatenHet afgeven van een verklaring van natuurlijke dood en het doen van een verzoek tot klinische obductie aan de familie stuit op verschillende logistieke, financiële en emotionele bezwaren, ook in de interactie tussen huisartsen en gemeentelijk lijkschouwers. Huisartsen hebben weinig ervaring met het voorkeursbeleid en zijn zich vaak te weinig bewust van de waarde van familieonderzoek na plotseling overlijden. Gemeentelijk lijkschouwers voelen zich vaak ten onrechte in de rol van behandelaar gedwongen als de huisarts de overlijdensverklaring en het obductieverzoek aan hen overlaat. De deelnemers droegen diverse oplossingen aan voor deze knelpunten.ConclusieDiverse factoren staan het voorkeursbeleid in de weg. Een landelijke richtlijn zou weinig doeltreffend zijn, maar een andere vergoedingssystematiek, voorlichting aan huisartsen en vooral ook het aanstellen van landelijke case-managers, die erop toezien dat zowel de justitiële als de medische zaken volgens het voorkeursbeleid worden afgehandeld, zou het aantal obducties aanzienlijk kunnen doen stijgen en de incidentie van plotselinge dood kunnen verlagen.AbstractBakker RH, Van der Werf C, Van Weert HCPM, Das K, Dijkstra GJ, Birnie E, Van Langen IM. Sudden death and genetic testing. Huisarts Wet 2013;56(8):370-5.BackgroundSudden death in people younger than 45 years is often a consequence of inherited heart disease. For this reason, autopsy and genetic testing of relatives for familial heart diseases is recommended. However, in the Netherlands these procedures are performed in the minority of cases only. The aim of this study was to investigate what factors hinder implementation of recommended procedures.MethodsDuring four semi-structured focus group meetings with 7–9 general practitioners (GPs) and/or coroners, participants discussed problems they encountered at different times during these procedures: certifying death due to natural causes, asking permission from relatives to perform an autopsy, and, in the case of GPs, referring relatives for genetic testing. Participants were also asked about possible solutions to these problems.ResultsThere were several logistic, financial, and emotional difficulties to providing a medical certificate of the cause of death as being from natural causes and asking permission for autopsy, as well as problems in the interaction between GPs and coroners. GPs had little experience with the recommended procedures and were often insufficiently aware of the importance of familial screening in the case of sudden death. Coroners often felt they are unjustifiably placed in the role of healthcare provider if GPs left the issuing of the medical death certificate and the request for autopsy to them. The participants suggested several solutions for these problems.ConclusionSeveral factors hinder the implementation of recommended procedures in the case of sudden death in young individuals. A national guideline seems ineffective, but a different system for the reimbursement of costs, information for GPs, and the appointment of national case managers to ensure that legal and medical aspects are handled according to recommended procedures might increase the number of autopsies performed in the case of sudden death and possibly reduce the number of sudden deaths.

Dementia care mapping to support staff in the care of people with intellectual disability and dementia: a feasibility study

BACKGROUND The number of people with intellectual disability and dementia increases; this combination causes behavioural changes. Dementia Care Mapping (DCM) supports staff in dementia care in nursing homes and may be useful in intellectual disability-care. This qualitative study examines the feasibility of DCM for older people with intellectual disability and dementia. METHODS The present authors obtained data in focus groups and interviews with professional users and analysed using a framework for feasibility studies. With experts in dementia and intellectual disability researches, the present authors determined the overall feasibility. RESULTS DCM was found to be feasible in intellectual disability-care, regarding five domains of feasibility. Staff reported DCM to be useful and valuable and addresses to their demand for skills and knowledge. All professional users found DCM feasible in intellectual disability-care, which was confirmed by experts. CONCLUSIONS DCM is feasible in intellectual disability-care. When fully tailored to intellectual disability-care, DCM is useful and provides opportunities to assess its effectiveness.

Differences between physicians in the likelihood of referral and acceptance of elderly patients for dialysis influence of age and comorbidity.

Background. Incidence of dialysis in elderly patients in the Netherlands is low compared to other countries. This study aims to assess the impact of patients’ age and comorbidity on the likelihood of referral and acceptance of patients for dialysis and whether this is affected by physician characteristics. Methods. A vignette study was performed on 209 primary care physicians, 162 non-nephrology specialists and 20 nephrologists working in northern Netherlands. Physicians were offered six vignettes concerning case reports of patients with end-stage renal disease (ESRD) and varying comorbidities or circumstances and asked about the likelihood of referral/acceptance of the patient in the given circumstances. Results. The likelihood of referral within groups of physicians varied widely, especially within the group of primary care physicians and non-nephrology specialists, but was not affected by characteristics of the physicians. The likelihood of referral or acceptance of patients for dialysis depended on the patients age, and type and severity of comorbidity. In general, primary care physicians and non-nephrology specialists were less likely to refer than nephrologists were willing to accept. Differences within and between groups of physicians to accept or refer were larger for 80-year-old patients than for 65-year-old patients. The differences were wider concerning patients with less severe shortness of breath and cognitive impairments and more severe diabetes and social impairments. Hardly any differences were found for patients with cancer. Conclusion. Patients’ age and comorbidities affect the likelihood of referral. Differences between groups of physicians suggest that there is insufficient agreement on the extent to which these factors should affect the referral/acceptance of patients for dialysis. These findings underline the need for more research into circumstances under which patients might benefit from dialysis. Guidelines should be developed to improve the referral of elderly and less healthy patients.