Background: Chronic constipation is common in people with intellectual disabilities, and seems to be highly prevalent in people with severe or profound intellectual and multiple disabilities (SPIMD). However, there is no current widely accepted definition for the constipation experienced by these individuals. Aim: This Delphi study aims to compile a list of operationalized criteria and symptoms of constipation in people with SPIMD based on practical experiences of and consensus between experts supporting them. Methods: A two-round Delphi study with an intermediate evaluation and analyses was conducted. Parents and relatives of persons with SPIMD and support professionals were included. The panel answered statements and open questions about symptoms and criteria of constipation. They were also requested to provide their opinion about classifying criteria and symptoms into domains. Answers to statements were analysed separately after both rounds with regard to consensus rate and displayed qualitatively; answers to open questions were analysed deductively. Results: In the first Delphi round (n = 47), consensus was achieved on criteria within the domains 'Defecation’ and 'Physical features', that were assigned to broader categories. Symptoms retrieved within the domain ‘Behavioural/Emotional’ were brought back to the panel as statements. After the second Delphi round (n = 38), consensus was reached on questions about domains, and for eight criteria (domain ‘Defecation’ n = 5; domain ‘Physical features n = 3). Within the domain ‘Behavioural/Emotional’, consensus was achieved for five symptoms. Criteria and symptoms with consensus >70% were considered ‘generic’ and
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BACKGROUND: It is difficult to diagnose constipation for people with severe or profound intellectual disabilities. Definitions for this are ambiguous, and the symptoms and signs are often unnoticed. The aim of this study is to identify clear definitions of constipation for people with different levels of intellectual disabilities and to identify signs and symptoms.METHOD: Guided by the PRISMA statement, a systematic review of the literature was conducted within electronic databases MEDLINE, Embase, CINAHL, Cochrane, and PsycINFO. Definitions, signs, and symptoms were extracted and the quality of definitions was assessed.RESULTS: In total, 24 studies were included. Quality of definitions ranged from poor to good quality. Standard and referenced definitions were used in ten studies, a self-composed definition was employed in eleven studies; and three studies did not refer to a source of the definition. The self-composed definitions had not been evaluated after being used for the target group, and no scientific substantiation was available. A broad range of signs and symptoms were described.CONCLUSIONS: No substantiated definition has been ascertained for constipation for people with severe or profound intellectual disabilities. Further research will be necessary to identify which signs and symptoms are important for defining constipation in this target group.
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Objective: To explore the nature and extent of possible residual complaints among Dutch hypothyroid patients using thyroid replacement therapy, we initiated a comprehensive study measuring health-related quality of life (QoL), daily functioning, and hypothyroidism-associated symptoms in patients and control persons. Methods: An online survey measuring thyroid-specific QoL (ThyPRO), daily functioning, and hypothyroidismassociated symptoms (ThySHI) was distributed among treated hypothyroid patients and control individuals. The advertising text was formulated in an open-ended manner. Patients also provided their most recent thyroid blood values and their thyroid medication. Results: There was a large-sized impairment of QoL (Cohen’s d = 1.04, +93 % ThyPRO score) in hypothyroid patients on thyroid replacement therapy (n = 1195) as compared to controls (n = 236). Daily functioning was significantly reduced i.e., general health (-38 %), problems with vigorous- (+64 %) and moderate activities (+77 %). Almost 80 % of patients reported having complaints despite thyroid medication and in-range thyroid blood values, with 75 % expressing a desire for improved treatment options for hypothyroidism (total n = 1194). Hypothyroid patients experienced 2.8 times more intense hypothyroidism-associated symptoms than controls (n = 865, n = 203 resp). Patients’ median reported serum concentrations were: TSH 0.90 mU/L, FT4 17.0 pmol/L, and FT3 2.67 pmol/L, with 52 % having low T3 levels (<3.1 pmol/L). The QoL was not found to be related to age, sex, BMI, menopausal status, stress, serum thyroid parameters, the origin and duration of hypothyroidism, the type of thyroid medication, or the LT4 dose used. Conclusions: Our study revealed major reductions in quality of life and daily functioning, and nearly three times more intense hypothyroidism-associated symptoms in treated hypothyroid patients as compared to controls, despite treatment and largely in-range serum TSH/FT4 concentrations. The QoL was not associated with serum thyroid parameters. We recommend future research into the origin of persisting complaints and the development of improved treatment modalities for hypothyroidism.
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Aim Life expectancy of people with severe or profound intellectual disability (SPID) increases, which contributes to the risk of developing dementia. However, early detection and diagnosing dementia is complex, because of their low-level baseline functioning. Therefore, the aim is to identify observable dementia symptoms in adults with SPID in available literature. Method A systematic literature search, in line with PRISMA guidelines, was conducted in PubMed, PsycINFO and Web of Science using a combination of search terms for SPID, dementia/aging and aged population.Results In total, fifteen studies met inclusion criteria. Cognitive, behavioral and psychological symptoms (BPSD) and a decline in the ability to perform activities of daily living as well as neurological and physical changes were found. This presentation gives an overview of reported symptoms of (possible) dementia-related symptoms in SPID. Conclusions Despite growing attention for dementia in people with ID in literature, only very few studies have studied dementia symptoms in SPID. Given the complexity of signaling and diagnosing dementia in SPID, dedicated studies are required to unravel the natural history of dementia in SPID, specifically focusing on observable symptoms for caregivers of (early) dementia in this population.
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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.
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Abstract: Background: Chronic obstructive pulmonary disease (COPD) and asthma have a high prevalence and disease burden. Blended self-management interventions, which combine eHealth with face-to-face interventions, can help reduce the disease burden. Objective: This systematic review and meta-analysis aims to examine the effectiveness of blended self-management interventions on health-related effectiveness and process outcomes for people with COPD or asthma. Methods: PubMed, Web of Science, COCHRANE Library, Emcare, and Embase were searched in December 2018 and updated in November 2020. Study quality was assessed using the Cochrane risk of bias (ROB) 2 tool and the Grading of Recommendations, Assessment, Development, and Evaluation. Results: A total of 15 COPD and 7 asthma randomized controlled trials were included in this study. The meta-analysis of COPD studies found that the blended intervention showed a small improvement in exercise capacity (standardized mean difference [SMD] 0.48; 95% CI 0.10-0.85) and a significant improvement in the quality of life (QoL; SMD 0.81; 95% CI 0.11-1.51). Blended intervention also reduced the admission rate (relative ratio [RR] 0.61; 95% CI 0.38-0.97). In the COPD systematic review, regarding the exacerbation frequency, both studies found that the intervention reduced exacerbation frequency (RR 0.38; 95% CI 0.26-0.56). A large effect was found on BMI (d=0.81; 95% CI 0.25-1.34); however, the effect was inconclusive because only 1 study was included. Regarding medication adherence, 2 of 3 studies found a moderate effect (d=0.73; 95% CI 0.50-0.96), and 1 study reported a mixed effect. Regarding self-management ability, 1 study reported a large effect (d=1.15; 95% CI 0.66-1.62), and no effect was reported in that study. No effect was found on other process outcomes. The meta-analysis of asthma studies found that blended intervention had a small improvement in lung function (SMD 0.40; 95% CI 0.18-0.62) and QoL (SMD 0.36; 95% CI 0.21-0.50) and a moderate improvement in asthma control (SMD 0.67; 95% CI 0.40-0.93). A large effect was found on BMI (d=1.42; 95% CI 0.28-2.42) and exercise capacity (d=1.50; 95% CI 0.35-2.50); however, 1 study was included per outcome. There was no effect on other outcomes. Furthermore, the majority of the 22 studies showed some concerns about the ROB, and the quality of evidence varied. Conclusions: In patients with COPD, the blended self-management interventions had mixed effects on health-related outcomes, with the strongest evidence found for exercise capacity, QoL, and admission rate. Furthermore, the review suggested that the interventions resulted in small effects on lung function and QoL and a moderate effect on asthma control in patients with asthma. There is some evidence for the effectiveness of blended self-management interventions for patients with COPD and asthma; however, more research is needed. Trial Registration: PROSPERO International Prospective Register of Systematic Reviews CRD42019119894; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=119894
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Introduction: Besides dyspnoea and cough, patients with idiopathic pulmonary fibrosis (IPF) or sarcoidosis may experience distressing non-respiratory symptoms, such as fatigue or muscle weakness. However, whether and to what extent symptom burden differs between patients with IPF or sarcoidosis and individuals without respiratory disease remains currently unknown. Objectives: To study the respiratory and non-respiratory burden of multiple symptoms in patients with IPF or sarcoidosis and to compare the symptom burden with individuals without impaired spirometric values, FVC and FEV1 (controls). Methods: Demographics and symptoms were assessed in 59 patients with IPF, 60 patients with sarcoidosis and 118 controls (age ≥18 years). Patients with either condition were matched to controls by sex and age. Severity of 14 symptoms was assessed using a Visual Analogue Scale. Results: 44 patients with IPF (77.3% male; age 70.6±5.5 years) and 44 matched controls, and 45 patients with sarcoidosis (48.9% male; age 58.1±8.6 year) and 45 matched controls were analyzed. Patients with IPF scored higher on 11 symptoms compared to controls (p<0.05), with the largest differences for dyspnoea, cough, fatigue, muscle weakness and insomnia. Patients with sarcoidosis scored higher on all 14 symptoms (p<0.05), with the largest differences for dyspnoea, fatigue, cough, muscle weakness, insomnia, pain, itch, thirst, micturition (night, day). Conclusions: Generally, respiratory and non-respiratory symptom burden is significantly higher in patients with IPF or sarcoidosis compared to controls. This emphasizes the importance of awareness for respiratory and non-respiratory symptom burden in IPF or sarcoidosis and the need for additional research to study the underlying mechanisms and subsequent interventions.
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Background: Everyday exposure to radiofrequency electromagnetic fields (RF-EMF) emitted from wireless devices such as mobile phones and base stations, radio and television transmitters is ubiquitous. Some people attribute non-specific physical symptoms (NSPS) such as headache and fatigue to exposure to RF-EMF. Most previous laboratory studies or studies that analyzed populations at a group level did not find evidence of an association between RF-EMF exposure and NSPS. Objectives: We explored the association between exposure to RF-EMF in daily life and the occurrence of NSPS in individual self-declared electro hypersensitive persons using body worn exposimeters and electronic diaries. Methods: We selected seven individuals who attributed their NSPS to RF-EMF exposure. The level of and variability in personal RF-EMF exposure and NSPS were determined during a three-week period. Data were analyzed using timeseries analysis in which exposure as measured and recorded in the diary was correlated with NSPS. Results: We found statistically significant correlations between perceived and actual exposure to wireless internet (WiFi - rate of change and number of peaks above threshold) and base stations for mobile telecommunications (GSM+UMTS downlink, rate of change) and NSPS scores in four of the seven participants. In two persons a higher EMF exposure was associated with higher symptom scores, and in two other persons it was associated with lower scores. Remarkably, we found no significant correlations between NSPS and timeweighted average power density, the most commonly used exposure metric. Conclusions: RF-EMFexposure was associated either positively or negatively with NSP Sinsome but not all of the selected self-declared electro hypersensitive persons. https://doi.org/10.1016/j.envint.2018.08.064
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Introduction: Depression can be a serious problem in young adult students. There is a need to implement and monitor prevention interventions for these students. Emotion-regulating improvisational music therapy (EIMT) was developed to prevent depression. The purpose of this study was to evaluate the feasibility of EIMT for use in practice for young adult students with depressive symptoms in a university context. Method: A process evaluation was conducted embedded in a larger research project. Eleven students, three music therapists and five referrers were interviewed. The music therapists also completed evaluation forms. Data were collected concerning client attendance, treatment integrity, musical components used to synchronise, and experiences with EIMT and referral. Results: Client attendance (90%) and treatment integrity were evaluated to be sufficient (therapist adherence 83%; competence 84%). The music therapists used mostly rhythm to synchronise (38 of 99 times). The students and music therapists reported that EIMT and its elements evoked changes in all emotion regulation components. The students reported that synchronisation elicited meaningful experiences of expressing joy, feeling heard, feeling joy and bodily responses of relaxation. The music therapists found the manual useful for applying EIMT. The student counsellors experienced EIMT as an appropriate way to support students due to its preventive character. Discussion: EIMT appears to be a feasible means of evoking changes in emotion regulation components in young adult students with depressive symptoms in a university context. More studies are needed to create a more nuanced and evidence-based understanding of the feasibility of EIMT, processes of change and treatment integrity.
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Background Anxiety and challenging behaviour (CB) often occur simultaneously in people with intellectual disabilities (ID). Understanding the associations between anxiety and CB may contribute to more accurate diagnoses and management of both anxiety and CB in this population. Aims To examine the relationship between anxiety and CB. Methods A literature review covering the period from January 2000 to January 2012. Results Seven studies about the relationship between psychiatric disorders, including anxiety, and CB were identified. These studies confirm the relationship between anxiety and CB in people with ID, although the precise nature of this relationship remains unclear. Conclusions The study points toward the existence of a moderate association between anxiety and CB. Further research is needed to clarify the complex nature of the association between anxiety and CB.
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