Background: Shared decision-making is one key element of interprofessional collaboration. Communication is often considered to be the main reason for inefficient or ineffective collaboration. Little is known about group dynamics in the process of shared decision-making in a team with professionals, including the patient or their parent. This study aimed to evaluate just that. Methods: Simulation-based training was provided for groups of medical and allied health profession students from universities across the globe. In an overt ethnographic research design, passive observations were made to ensure careful observations and accurate reporting. The training offered the context to directly experience the behaviors and interactions of a group of people. Results: Overall, 39 different goals were defined in different orders of prioritizing and with different time frames or intervention ideas. Shared decision-making was lacking, and groups chose to convince the parents when a conflict arose. Group dynamics made parents verbally agree with professionals, although their non-verbal communication was not in congruence with that. Conclusions: The outcome and goalsetting of an interprofessional meeting are highly influenced by group dynamics. The vision, structure, process, and results of the meeting are affected by multiple inter- or intrapersonal factors.
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The expressive vocabulary of children with Down Syndrome (DS) is generally measured with parental reports, such as the Communicative Development Inventory (CDI), given that standardized tests for assessing vocabulary levels may be too difficult for most young children with DS. The CDI provides important insight into the parents’ perception of their child’s vocabulary development. The CDI has proven to be a valid measurement of expressive vocabulary, spoken and gestural, in typical and atypical populations. The validity in children with DS is not well established and signed vocabulary is often not included. This longitudinal study examined the concurrent and predictive validity of the Dutch version of the CDI (N-CDI) in children with DS between 2;0 and 7;6 years old to assess spoken and signed vocabulary. N-CDI scores were assessed on strength of association with mental age,an expressive vocabulary test and spontaneous language analyses in a play setting with parents at T1 and T2 (1.5 years later), and a therapy setting with speech language pathologists at T1. The results of the present study show that the N-CDI is a valuable and valid measurement of expressive vocabulary in children with DS. Strengths and weaknesses of several assessment methods for expressive vocabulary are discussed.
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Abstract: Hypertension is both a health problem and a financial one globally. It affects nearly 30 % of the general population. Elderly people, aged ≥65 years, are a special group of hypertensive patients. In this group, the overall prevalence of the disease reaches 60 %, rising to 70 % in those aged ≥80 years. In the elderly population, isolated systolic hypertension is quite common. High systolic blood pressure is associated with an increased risk of cardiovascular disease, cerebrovascular disease, peripheral artery disease, cognitive impairment and kidney disease. Considering the physiological changes resulting from ageing alongside multiple comorbidities, treatment of hypertension in elderly patients poses a significant challenge to treatment teams. Progressive disability with regard to the activities of daily life, more frequent hospitalisations and low quality of life are often seen in elderly patients. There is discussion in the literature regarding frailty syndrome associated with old age. Frailty is understood to involve decreased resistance to stressors, depleted adaptive and physiological reserves of a number of organs, endocrine dysregulation and immune dysfunction. The primary dilemma concerning frailty is whether it should only be defined on the basis of physical factors, or whether psychological and social factors should also be included. Proper nutrition and motor rehabilitation should be prioritised in care for frail patients. The risk of orthostatic hypotension is a significant issue in elderly patients. It results from an autonomic nervous system dysfunction and involves maladjustment of the cardiovascular system to sudden changes in the position of the body. Other significant issues in elderly patients include polypharmacy, increased risk of falls and cognitive impairment. Chronic diseases, including hypertension, deteriorate baroreceptor function and result in irreversible changes in cerebral and coronary circulation. Concurrent frailty or other components of geriatric syndrome in elderly patients are associated with a worse perception of health, an increased number of comorbidities and social isolation of the patient. It may also interfere with treatment adherence. Identifying causes of non-adherence to pharmaceutical treatment is a key factor in planning therapeutic interventions aimed at increasing control, preventing complications, and improving long-term outcomes and any adverse effects of treatment. Diagnosis of frailty and awareness of the associated difficulties in adhering to treatment may allow targeting of those elderly patients who have a poorer prognosis or may be at risk of complications from untreated or undertreated hypertension, and for the planning of interventions to improve hypertension control.
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Enhancing communication performance skills may help children with Down Syndrome (DS) to expand their opportunities for participation in daily life. It is a clinical challenge for speech-language pathologists (SLP) to disentangle various mechanisms that contribute to the language and communication problems that children with DS encounter. Without clarity of different levels of functioning, appropriate interventions may be poorly conceived or improperly implemented. In the present study, the International Classification of Functioning, Disability and Health – Children and Youth Version (ICF-CY) framework was used to classify contributing factors to communication performance in a multiple case study of six young children with DS. Within a comprehensive assessment, we identified individual and environmental facilitators and barriers, leading to an integrative profile of communication performance (IPCP) for each child. Whereas these six children shared a developmental, and/or expressive vocabulary age and/or level of communicative intent, the children faced similar but also unique personal and environmental factors that play an important role in their communication performance. Our data reveal that a combination of different factors may lead to the same language outcomes and vice versa, based on a unique pattern of interdependency of ICF-CY domains. Planning SLP interventions for enhancing communication performance in children with DS should therefore be based on a comprehensive view on the competences and limitations of every individual child and its significant communication partners. This evaluation should address facilitators and barriers in body functions, structures, activities, participation and environment, with a specific focus on individual strengths. The ICF-CY provides a useful framework for constructing an IPCP that serves this purpose.
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Introduction: Diagnosing dementia in people with severe/profound intellectual (and multiple) disabilities (SPI(M)D) is complex. Whereas existing dementia screening instruments as a whole are unsuitable for this population, a number of individual items may apply. Therefore, this study aimed to identify applicable items in existing dementia screening instruments. Methods: Informant interviews about 40 people with SPI(M)D were conducted to identify applicable items in the Dementia Scale for Down Syndrome, Behavioral and Psychological Symptoms of Dementia in Down Syndrome II scale, Dementia Questionnaire for persons with Mental Retardation and Social competence Rating scale for people with Intellectual Disabilities. Results: Among 193 items, 101 items were found applicable, categorized in 5 domains: behavioral and psychological functioning (60 items), cognitive functioning (25), motor functioning (6), activities of daily living (5) and medical comorbidities (5). Conclusion: Identifying applicable items for people with SPI(M)D is an essential step in developing a dedicated dementia screening instrument for this population.
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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.
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The prevention and diagnosis of frailty syndrome (FS) in cardiac patients requires innovative systems to support medical personnel, patient adherence, and self-care behavior. To do so, modern medicine uses a supervised machine learning approach (ML) to study the psychosocial domains of frailty in cardiac patients with heart failure (HF). This study aimed to determine the absolute and relative diagnostic importance of the individual components of the Tilburg Frailty Indicator (TFI) questionnaire in patients with HF. An exploratory analysis was performed using machine learning algorithms and the permutation method to determine the absolute importance of frailty components in HF. Based on the TFI data, which contain physical and psychosocial components, machine learning models were built based on three algorithms: a decision tree, a random decision forest, and the AdaBoost Models classifier. The absolute weights were used to make pairwise comparisons between the variables and obtain relative diagnostic importance. The analysis of HF patients’ responses showed that the psychological variable TFI20 diagnosing low mood was more diagnostically important than the variables from the physical domain: lack of strength in the hands and physical fatigue. The psychological variable TFI21 linked with agitation and irritability was diagnostically more important than all three physical variables considered: walking difficulties, lack of hand strength, and physical fatigue. In the case of the two remaining variables from the psychological domain (TFI19, TFI22), and for all variables from the social domain, the results do not allow for the rejection of the null hypothesis. From a long-term perspective, the ML based frailty approach can support healthcare professionals, including psychologists and social workers, in drawing their attention to the nonphysical origins of HF.
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Objective. There are no Dutch language disease-specific questionnaires for patients with patellofemoral pain syndrome available that could help Dutch physiotherapists to assess and monitor these symptoms and functional limitations. The aim of this study was to translate the original disease-specific Kujala Patellofemoral Score into Dutch and evaluate its reliability. Methods. The questionnaire was translated from English into Dutch in accordance with internationally recommended guidelines. Reliability was determined in 50 stable subjects with an interval of 1 week. The patient inclusion criteria were age between 14 and 60 years; knowledge of the Dutch language; and the presence of at least three of the following symptoms: pain while taking the stairs, pain when squatting, pain when running, pain when cycling, pain when sitting with knees flexed for a prolonged period, grinding of the patella and a positive clinical patella test. The internal consistency, test–retest reliability, measurement error and limits of agreement were calculated. Results. Internal consistency was 0.78 for the first assessment and 0.80 for the second assessment. The intraclass correlation coefficient (ICCagreement) between the first and second assessments was 0.98. The mean difference between the first and second measurements was 0.64, and standard deviation was 5.51. The standard error measurement was 3.9, and the smallest detectable change was 11. The Bland and Altman plot shows that the limits of agreement are 10.37 and 11.65. Conclusions. The results of the present study indicated that the test–retest reliability translated Dutch version of the Kujala Patellofemoral Score questionnaire is equivalent of the test– retest original English language version and has good internal consistency. Trial registration NTR (TC = 3258). Copyright © 2015 John Wiley & Sons, Ltd.
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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.
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BACKGROUND: Differentiating dementia from baseline level of functioning is difficult among people with severe/profound intellectual (and multiple) disabilities. Moreover, studies on observable dementia symptoms are scarce. This study examined (a) the relevance of dementia diagnosis, (b) observable symptoms and (c) training/information needs.METHODS: Four explorative focus groups were held with care professionals and family members who have experience with people with severe/profound intellectual (and multiple) disabilities (≥40 years) and decline/dementia.RESULTS: Thematic analysis showed that participants wanted to know about a dementia diagnosis for a better understanding and to be able to make informed choices (question 1). Using a categorisation matrix, cognitive and behavioural changes were shown to be most prominent (question 2). Participants indicated that they needed enhanced training, more knowledge development and translation, and supportive organisational choices/policies (question 3).CONCLUSIONS: Timely identifying/diagnosing dementia allows for a timely response to changing needs. This requires a better understanding of symptoms.
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