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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Older adults experience visual problems owing to biological ageing or eye disease. In the Netherlands, the prevalence of visual impairments is the highest in the subgroup of nursing home residents (41.3%). These impairments influence quality of life in terms of limiting daily activities and participation in social activities. Furthermore, 63% of visual problems are defined as ‘avoidable blindness’. For this reason, screening of visual functioning in the nursing home is of major importance. Moreover, visual functioning should also be taken into account to prevent the incidence of falls.
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Background The ability to perform activities of daily living (ADL) as a component of participation is one of the factors that contribute to the quality of life. The ability to perform ADL for persons experiencing severe/profound intellectual disability (ID) may be reduced due to their cognitive and physical capacities. However, until recently, the impact of the significantly prevalent visual impairments on the performance of activities of daily living has not yet been revealed within this group. Aim The purpose of this study was to investigate the impact of visual impairment on the performance of Activities of Daily Living for persons with a severe/profound intellectual disability. Method The Barthel Index (BI) and Comfortable Walking Speed (CWS) were employed in order to measure in 240 persons with severe/profound ID and having Gross Motor Functioning Classification System (GMFCS) levels I, II or III the ability of performing activities of daily living (ADL); this included 120 persons with visual impairment. Effects were analysed with linear regression analyses. Results The results of the study demonstrated that visual impairment has a minimal, but significant, effect on the ability of performing Activities of Daily Living (BI) for persons with a severe/profound intellectual disability. Forty four percent of the total BI score can be predicted by the GMFCS level and the level of ID; 45% with the additional presence of visual impairment. GMFCS levels II or III, a profound ID level, and visual impairment yielded lower BI scores compared to GMFCS Level I, severe ID, and no visual impairment. CWS scores did not significantly vary if visual impairment was present. Conclusions Visual impairment does slightly affect the ability to perform ADL in persons experiencing severe/profound ID.
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The aim of this study was to gain insight into the visual functioning of children with profound intellectuual and multiple disabilities (PIMD). A mixed methods study was performed, determining cross-sectional quantitative ophthalmological/orthoptic data, and qualitative observational data with a standardized research protocol (SRP) of 73 children with PIMD. Descriptive statistics and correlations were used for analyses of the data. Using ophthalmological data, 90.4% of the participants were found visually impaired. Based on the visual acuity (VA) testing, 49.6% of the participants had an impaired VA (
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Background: Marfan syndrome (MFS) is a heritable connective tissue disease caused by a defect in FBN1. The diagnosis is based on the revised Ghent criteria. The main features involve the cardiovascular, musculoskeletal, ophthalmic, pulmonary systems and facial features. Although the clinical manifestations of MFS in children are thoroughly addressed in several studies, literature on the impact of MFS on daily functioning is restricted to pediatric advice on sports and leisure participation. Therefore, the full impact of MFS on daily functioning remains unclear. The aim of this qualitative study was to explore parents' perspectives on the impact of MFS on daily functioning of children with MFS aged 4-12 years, themselves and family regarding functional performance, activities, participation, personal and environmental factors, and disease burden. Methods: In this qualitative study parents participated in individual semi-structured interviews (n = 10) and 3 focus groups (n = 5, n = 5 and n = 6). Meetings were transcribed, and data were analyzed using thematic analysis. Meaningful concepts were coded, and concepts concerning children with MFS were linked to the International Classification of Functioning, Disability and Health for Children and Youth. Thereafter themes were identified and interpreted.Results: Parents reported their children could not keep up with peers because of fatigue, pain and physical impairments. Children experienced participation restrictions in school, sports, play and other leisure activities. Parents reported their child as being different due to physical appearance, which provoked unsupportive attitudes. Parental burden was caused by high care needs, lack of support, a limited social life, and concerns about the child's development. Family burden was caused by adjusted and complex family schedules, other family members with MFS, and reproductive planning decision-making, whereas family cohesiveness and caring were positively perceived factors. Conclusions: Parents perceived a large impact of MFS on daily functioning of their children with MFS, themselves and their family. More awareness among all professionals involved in the care of children with MFS and their families is needed so that professionals can address their support needs and provide tailored interventions, rehabilitation and/or educational programs to empower and improve daily functioning of the children, parents and family.
MULTIFILE
Intra-ocular straylight can cause decreased visual functioning, and it may cause diminished vision-related quality of life (VRQOL). This cross-sectional population-based study investigates the association between straylight and VRQOL in middle-aged and elderly individuals. Multivariable linear regression analyses were used to assess the association between straylight modeled continuously and cutoff at the recommended fitness-to-drive value, straylight ≥ 1.4 log(s), and VRQOL. The study showed that participants with normal straylight values, straylight ≤ 1.4 log(s), rated their VRQOL slightly better than those with high straylight values (straylight ≥ 1.4 log(s)). Furthermore, multivariable regression analysis revealed a borderline statistical significant association (p = .06) between intra-ocular straylight and self-reported VRQOL in middle-aged and elderly individuals. The association between straylight and self-reported VRQOL was not influenced by the status of the intra-ocular lens (natural vs. artificial intra-ocular lens after cataract extraction) or the number of (instrumental) activities of daily living that were reported as difficult for the elderly individuals.
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Aim and objectives. To improve (eye)care in nursing homes by reporting and assessing visual functioning to enhance professional caregivers' awareness of visual problems. Background. Older adults experience visual problems owing to biological ageing or eye disease. In the Netherlands, the prevalence of visual impairments is the highest in the subgroup of nursing home residents (41AE3%). These impairments influence quality of life in terms of limiting daily activities and participation in social activities. Furthermore, 63% of visual problems are defined as 'avoidable blindness'. For this reason, screening of visual functioning in the nursing home is of major importance. Moreover, visual functioning should also be taken into account to prevent the incidence of falls. Design. A field study on recorded information of visual functioning and visual assessment in nursing homes. Methods. Assessment of visual functioning of 259 residents in nursing homes. Subsequently, recorded information in client files is related to the assessment outcome. Results. Only in 101 (39%) of the 259 client records was some information on visual functioning found in client files. Whether a prescription for new glasses was dispensed made no difference in reporting on visual functioning in the client record. In more than half of the cases assessed as 'low vision or blindness', no information about visual functioning was found. Furthermore, no information was found in 31% (80/259) cases of suspected visual problems (referrals). A significant proportion of client records (p < 0AE05) showed no recorded information in cases of referral for further checkup. Conclusions. In this study, one-third of nursing homes residents have visual problems, needing examination by an ophthal-mologist. Problems with visual functioning should be assessed and captured in client records. Awareness of residents' visual functioning is a prerequisite for adapting basic daily care to the residents' needs.
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Physical activity is crucial in human life, whether in everyday activities or elite sports. It is important to maintain or improve physical performance, which depends on various factors such as the amount of physical activity, the capability, and the capacity of the individual. In daily life, it is significant to be physically active to maintain good health, intense exercise is not necessary, as simple daily activities contribute enough. In sports, it is essential to balance capacity, workload, and recovery to prevent performance decline or injury.With the introduction of wearable technology, it has become easier to monitor and analyse physical activity and performance data in daily life and sports. However, extracting personalised insights and predictions from the vast and complex data available is still a challenge.The study identified four main problems in data analytics related to physical activity and performance: limited personalised prediction due to data constraints, vast data complexity, need for sensitive performance measures, overly simplified models, and missing influential variables. We proposed end investigated potential solutions for each issue. These solutions involve leveraging personalised data from wearables, combining sensitive performance measures with various machine learning algorithms, incorporating causal modelling, and addressing the absence of influential variables in the data.Personalised data, machine learning, sensitive performance measures, advanced statistics, and causal modelling can help bridge the data analytics gap in understanding physical activity and performance. The research findings pave the way for more informed interventions and provide a foundation for future studies to further reduce this gap.
LINK
Individuals with mild intellectual disabilities or borderline intellectual functioning are at increased risk to develop a substance use disorder—however, effective treatment programs adapted to this target group are scarce. This study evaluated the effectiveness of Take it Personal!+ in individuals with mild intellectual disabilities or borderline intellectual functioning and substance use disorder. Take it Personal!+ is a personalized treatment based on motivational interviewing and cognitive-behavioral therapy supported by an mHealth application. Data were collected in a nonconcurrent multiple baseline single-case experimental design across individuals with four phases (i.e., baseline, treatment, posttreatment, and follow-up). Twelve participants were randomly allocated to baseline lengths varying between 7 and 11 days. Substance use quantity was assessed during baseline, treatment, and posttreatment with a daily survey using a mobile application. Visual analysis was supported with statistical analysis of the daily surveys by calculating three effect size measures in 10 participants (two participants were excluded from this analysis due to a compliance rate below 50%). Secondary, substance use severity was assessed with standardized questionnaires at baseline, posttreatment, and follow-up and analyzed by calculating the Reliable Change Index. Based on visual analysis of the daily surveys, 10 out of 12 participants showed a decrease in mean substance use quantity from baseline to treatment and, if posttreatment data were available, to posttreatment. Statistical analysis showed an effect of Take it Personal!+ in terms of a decrease in daily substance use in 8 of 10 participants from baseline to treatment and if posttreatment data were available, also to posttreatment. In addition, data of the standardized questionnaires showed a decrease in substance use severity in 8 of 12 participants. These results support the effectiveness of Take it Personal!+ in decreasing substance use in individuals with mild intellectual disabilities or borderline intellectual functioning.
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Severe mental illness (SMI) imposes a significant burden on individuals, resulting in long-lasting symptoms, lower social functioning and impaired physical health. Physical activity (PA) interventions can improve both mental and physical health and care workers can serve as healthy role models. Yet, individuals with SMI face barriers to PA participation. This study evaluated the effects of Muva, and assessed if mental health worker’s (MHW) characteristics were associated with clients’ change in social functioning. Muva, an intervention package primarily created to increase PA of people with SMI, places a special focus on MHWs as they might play a key role in overcoming barriers. Other PA barrier-decreasing elements of Muva were a serious game app, lifestyle education, and optimization of the medication regime. Method: This study is a pragmatic stepped wedge cluster controlled trial. Controls received care as usual. Mixedeffects linear regressions were performed to assess changes in the primary outcome social functioning, and secondary outcomes quality of life, psychiatric symptoms, PA, body mass index, waist circumference, and blood pressure. Results: 84 people with SMI were included in three intervention clusters, and 38 people with SMI in the control cluster. Compared to the control condition, there was significant clinical improvement of social functioning in interpersonal communication (p=<0.01) and independent competence (p=<0.01) in people receiving Muva. These outcomes were not associated with MHW’s characteristics. There were no changes in the other outcome measures. Conclusions: Muva improved social functioning in people with SMI compared to care as usual.
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