Zoekresultaten

The prevalence of bruxism in children with profound intellectual and multiple disabilities

Introduction: Bruxism is a repetitive masticatory muscle activity that may cause substantial morbidity and reduce the quality of life in children with profound intellectual and multiple disabilities. Assessment methods most commonly used were caregiver reporting and dental examination, This systematic review with meta-analysis aims to determine the prevalence of bruxism in children with profound intellectual and multiple disabilities and to describe the currently used assessment methods for bruxism in this population. Methods: We conducted a systematic review and meta-analysis using a multi-component search strategy. We used a random effects model to calculate the prevalence and 95 % confidence intervals for each study, for all studies combined, and specifically for Rett syndrome (RS), cerebral palsy (CP), Down syndrome (DS), and “other disorders (primarily Angelman syndrome and Prader–Willi syndrome).” Results: The prevalence for the entire group based on a random effects model was found to be 49 % (95 %CI 41–57 %) with high heterogeneity (I2 = 93 %, p < 0.01), for RS 74 % (95 %CI 53–88 %, I2 = 84 %, p < 0.01), CP 48 % (95 %CI 38–57 %, I2 = 86 %, p < 0.01), DS 40 % (95 %CI 33–47 %, I2 = 60 %, p < 0.01) and “other disorders” 40 % (95 %CI 18–67 %, I2 = 98 %, p < 0.01). The group prevalences were not equal, indicating a significant difference (P-value = 0.03), with a notably higher likelihood of RS. Conclusion: We observed a five-fold increased likelihood of bruxism in children with profound intellectual and multiple disabilities. The disorder with the highest prevalence was Rett syndrome, with a seven-fold increased likelihood of bruxism. The increased likelihood of bruxism in this vulnerable group of children demands clinicians pay heed to this substantial morbidity.

Dementia in People with Severe/Profound Intellectual (and Multiple) Disabilities:

IntroductionObservable dementia symptoms are hardly studied in people with severe/profound intellectual (and multiple) disabilities (SPI(M)D). Insight in symptomatology is needed for timely signaling/diagnosis. This study aimed to identify practice-based observations of dementia symptoms in this population.MethodsCare professionals and family members were invited to complete a survey about symptoms. Quantitatively analyzed survey data were further deepened through semi-structured interviews with care professionals having vast experience in signaling/diagnosing dementia in this population. Symptoms were categorized using a symptom matrix.ResultsSurvey respondents and interviewees frequently observed a decline in activities of daily living (ADL) functioning and behavioral and psychological changes, like increased irritability, anxiety, apathy and decreased eating/drinking behavior. Cognitive symptoms were particularly recognized in persons with verbal communication and/or walking skills. To lesser extent motor changes and medical comorbidities were reported.ConclusionIncreased insight in dementia symptoms contributes to developing a dedicated screening instrument for dementia in people with SPI(M)D.

Obstipatie bij mensen met verstandelijke beperkingen

Inleiding: Bij mensen met verstandelijke beperkingen (VB) is obstipatie een van de meest voorkomende gezondheidsproblemen en de gevolgen kunnen groot zijn. Dit onderzoek beoogt een overzicht te geven van de prevalentie van, risicofactoren voor en (niet-)medicamenteuze behandeling van obstipatie bij mensen met VB. Daarnaast wordt de relatie tussen obstipatie, dysfagie en medicatie geanalyseerd.Methode: Het onderzoek bestond uit literatuur- en dossieronderzoek. Voor het systematische literatuuronderzoek werden de databases PubMed en Scopus doorzocht. Het dwarsdoorsnede (cross-sectionele) dossieronderzoek werd uitgevoerd bij zorginstelling Alliade. Data over aanwezigheid van obstipatie, laxantiagebruik, inzet van niet-medicamenteuze behandelingen en risicofactoren, waaronder dysfagie en medicatiegebruik, werden verzameld.Resultaten: De literatuur toonde sterk variërende obstipatie-prevalenties van 6 tot 94%. Het dossieronderzoek liet zien dat 24,3% van de cliënten een obstipatiediagnose heeft en 55% chronisch laxantia gebruikt. Risicofactoren voor obstipatie werden in de literatuur weinig gevonden. Risicofactoren gevonden in de dossiers waren mate VB, dysfagie en medicatie. Niet-medicamenteuze behandelingen voor obstipatie werden zelden gerapporteerd en betroffen fysiotherapeutische behandelingen, buikmassage en voedingssupplementen. Conclusie: De prevalentie van obstipatie en chronisch laxantiagebruik bleek hoog. Er is nog veel onduidelijk over risicofactoren en over de inzet van alternatieve behandelmethoden naast laxantia. Gezien de grote impact die obstipatie kan hebben op mensen met VB is verder onderzoek naar deze aandoening en de behandelmethoden wenselijk.

The neglected puzzle of dementia in people with severe/profound intellectual disabilities

BACKGROUND: Dementia is increasingly prevalent in people with severe/profound intellectual disabilities. However, early detection and diagnosis of dementia is complex in this population. This study aimed to identify observable dementia symptoms in adults with severe/profound intellectual disabilities in available literature.METHOD: A systematic literature search was conducted in PubMed, PsycINFO and Web of Science with an exhaustive search string using a combination of search terms for severe/profound intellectual disabilities and dementia/ageing.RESULTS: Eleven studies met inclusion criteria. Cognitive decline, behavioural and psychological alterations, decline in activities of daily living as well as neurological and physical changes were found.CONCLUSIONS: Only a very limited number of studies reported symptoms ascribed to dementia in adults with severe/profound intellectual disabilities. Given the complexity of signalling and diagnosing dementia, dedicated studies are required to unravel the natural history of dementia in this population.

Customised care

Physiotherapy, Dietetics and Occupational Therapy have been collaborating over recent years to develop an optimal healthcare programme for patients with Post Intensive Care Syndrome (PICS). This case is an example of PICS symptomatology and focuses on the collaboration between Physiotherapy and Dietetics. What is PICS? Owing to healthcare improvements, more and more patients are surviving the intensive Care Unit (ICU), and recovery during and after ICU stay has been receiving more attention [1, 2]. Approximately 30% of the patients admitted to an ICU have persistent symptoms including muscle weakness, reduced walking ability, fatigue, concentration deficits, memory problems, malnutrition, sleep and mood disorders sometimes even years after discharge [3-8]. Since 2012, this combination of physical, cognitive and psychiatric manifestations and reduced quality of life after staying in an ICU has been recognised as Post Intensive Care Syndrome (PICS) [9]. The impact of PICS is often not limited to the patient as it may also impact the mental status of the patient’s immediate family. This is known as PICS-Family (PICS-F) [10-12]. Treatment of PICS: Approximately 80% of PICS patients need primary care physiotherapy. Physiotherapists and GPs are often the only primary care professionals involved in the recovery process of these patients after hospital discharge [13, 14]. Both patients and healthcare professionals report a number of difficulties, e.g. limited transmural continuity in healthcare, coordination of multidisciplinary activities, supportive treatment guidelines and specific knowledge of pathology, treatment and prognosis. Patients report that they are not adequately supported when resuming their professional activities and that medical and allied healthcare treatments do not fully meet their needs at that time [15-18]. The REACH project: In order to improve the situation, the REACH project (REhabilitation After Critical illness and Hospital discharge) was started in Amsterdam region in the Netherlands. Within REACH, a Community of Practice – consisting of professionals (physiotherapists, occupational therapists, dieticians), those who live or have lived with the condition and researchers – has developed a transmural rehab programme. A special attribute of this programme is the integration of the concept of “positive health”. The case in this article describes the treatment of a PICS patient treated within the REACH network.

The Origin, Content and Context of Changing Research–Education Connections