Heritable Connective Tissue Disorders (HCTD) show an overlap in the physical features that can evolve in childhood. It is unclear to what extent children with HCTD experience burden of disease. This study aims to quantify fatigue, pain, disability and general health with standardized validated questionnaires.METHODS: This observational, multicenter study included 107 children, aged 4-18 years, with Marfan syndrome (MFS), 58%; Loeys-Dietz syndrome (LDS), 7%; Ehlers-Danlos syndromes (EDS), 8%; and hypermobile Ehlers-Danlos syndrome (hEDS), 27%. The assessments included PROMIS Fatigue Parent-Proxy and Pediatric self-report, pain and general health Visual-Analogue-Scales (VAS) and a Childhood Health Assessment Questionnaire (CHAQ).RESULTS: Compared to normative data, the total HCTD-group showed significantly higher parent-rated fatigue T-scores (M = 53 (SD = 12), p = 0.004, d = 0.3), pain VAS scores (M = 2.8 (SD = 3.1), p < 0.001, d = 1.27), general health VAS scores (M = 2.5 (SD = 1.8), p < 0.001, d = 2.04) and CHAQ disability index scores (M = 0.9 (SD = 0.7), p < 0.001, d = 1.23). HCTD-subgroups showed similar results. The most adverse sequels were reported in children with hEDS, whereas the least were reported in those with MFS. Disability showed significant relationships with fatigue (p < 0.001, rs = 0.68), pain (p < 0.001, rs = 0.64) and general health (p < 0.001, rs = 0.59).CONCLUSIONS: Compared to normative data, children and adolescents with HCTD reported increased fatigue, pain, disability and decreased general health, with most differences translating into very large-sized effects. This new knowledge calls for systematic monitoring with standardized validated questionnaires, physical assessments and tailored interventions in clinical care.
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INLEIDING In deze module worden behandeladviezen gegeven voor de Post-COVID-19 ambulante behandeling in de geriatrische revalidatie gericht op somatische-, functionele- en psychische status. Deze module is een onderdeel van het behandeladvies post-COVID-19 (geriatrische) revalidatie-Verenso. Deze module is in een zeer korte tijd tot stand gekomen en heeft de status van groeidocument. Zorgvuldigheid is betracht om zowel de (beperkte) ervaringskennis, als de actuele stand van de wetenschappelijke literatuur hierin te betrekken. Voor dit behandeladvies is gebruik gemaakt van het door GRZPLUS ontwikkeld ambulant revalidatieprogramma CO FIT+. Bij GRZPLUS is een doorontwikkeling gemaakt op basis van de update behandeladvies post-COVID-19 geriatrische revalidatie van Verenso (Verenso, 19-05-2020) welke is gebaseerd op de principes van longrevalidatie zoals vertaald in het Behandelprogramma geriatrische COPD-revalidatie (van Damvan Isselt et al.) en het Behandelprogramma COVID-19 Post IC, van Revalidatiecentrum de Hoogstraat (Brouwers, de Graaf). Dit is aangevuld met behandeladviezen en leidraden vanuit de beroepsverenigingen en kennis uit wetenschappelijk onderzoek (long-revalidatie) en vanuit het REACH netwerk (REhabilitation After Critical illness and Hospital discharge). De komende maanden zullen zowel de nieuwe wetenschappelijke literatuur als de ervaringen uit de praktijk gebruikt worden om de handreiking te verbeteren en zo nodig aan te vullen. Dat zullen wij doen met specialisten ouderengeneeskunde, revalidatieartsen, klinisch-geriaters, paramedici, longartsen, verpleegkundigen, infectie deskundigen, en andere betrokken beroepsgroepen. De revalidatie van ambulante post-COVID-19 patiënten vereist vooral afstemming binnen de multidisciplinaire zorg. De complexiteit en ernst van de problematiek en de interactie van beperkingen op diverse domeinen maakt dat interdisciplinaire behandeling essentieel is.
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Objective: To report the study protocol and baseline characteristics of a prospective cohort study to evaluate longitudinal recovery trajectories of patients recovering from COVID-19 who have visited a primary care allied health professional. Design: Report of the protocol and baseline characteristics for a prospective cohort study with a mixed-methods approach. Patients: Patients recovering from COVID-19 treated by primary care dietitians, exercise therapists, occupational therapists, physical therapists and/or speech and language therapists in the Netherlands. Methods: The prospective study will measure primary outcome domains: participation, health-related quality of life, fatigue, physical functioning, and costs, at baseline, 3, 6, 9 and 12 months. Interviews, on the patients’ experiences with allied healthcare, will be held with a subsample of patients and allied health professionals. Results: The cohort comprises 1,451 patients (57% female, mean age 49 (standard deviation 13) years). Preliminary results for the study cohort show that 974 (67%) of the participants reported mild/moderate severity symptoms during the infection period and patients reported severe restrictions in activities of daily living compared with previous research in other patient populations. Both quantitative and qualitative, will provide insight into the recovery of patients who are treated by allied health professionals. Conclusion: In conclusion, this will be the first comprehensive study to longitudinally evaluate the recovery trajectories and related costs of patients recovering from COVID-19 who are treated by allied health professionals in the Netherlands. This study will provide evidence for the optimal strategy to treat patients recovering from COVID-19 infection, including which patients benefit, and to what extent, from treatment, and which factors might impact their recovery course over time. The preliminary results of this study demonstrated the severity of restrictions and complaints at the start of therapy are substantial.
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Purpose: To study the association between fatigue and participation and QoL after acquired brain injury (ABI) in adolescents and young adults (AYAs). Materials & Methods: Cross-sectional study with AYAs aged 14–25 years, diagnosed with ABI. The PedsQL™ Multidimensional Fatigue Scale, Child & Adolescent Scale of Participation, and PedsQL™4.0 Generic Core Scales were administered. Results: Sixty-four AYAs participated in the study, 47 with traumatic brain injury (TBI). Median age at admission was 17.6 yrs, 0.8 yrs since injury. High levels of fatigue (median 44.4 (IQR 34.7, 59.7)), limited participation (median 82.5 (IQR 68.8, 92.3)), and diminished QoL (median 63.0 (IQR 47.8, 78.3)) were reported. More fatigue was significantly associated with more participation restrictions (β 0.64, 95%CI 0.44, 0.85) and diminished QoL (β 0.87, 95%CI 0.72, 1.02). Conclusions: AYAs with ABI reported high levels of fatigue, limited participation and diminished quality of life with a significant association between fatigue and both participation and QoL. Targeting fatigue in rehabilitation treatment could potentially improve participation and QoL.
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Purpose To empirically define the concept of burden of neck pain. The lack of a clear understanding of this construct from the perspective of persons with neck pain and care providers hampers adequate measurement of this burden. An additional aim was to compare the conceptual model obtained with the frequently used Neck Disability Index (NDI). Methods Concept mapping, combining qualitative (nominal group technique and group consensus) and quantitative research methods (cluster analysis and multidimensional scaling), was applied to groups of persons with neck pain (n = 3) and professionals treating persons with neck pain (n = 2). Group members generated statements, which were organized into concept maps. Group members achieved consensus about the number and description of domains and the researchers then generated an overall mind map covering the full breadth of the burden of neck pain. Results Concept mapping revealed 12 domains of burden of neck pain: impaired mobility neck, neck pain, fatigue/concentration, physical complaints, psychological aspects/consequences, activities of daily living, social participation, financial consequences, difficult to treat/difficult to diagnose, difference of opinion with care providers, incomprehension by social environment, and how person with neck pain deal with complaints. All ten items of the NDI could be linked to the mind map, but the NDI measures only part of the burden of neck pain. Conclusion This study revealed the relevant domains for the burden of neck pain from the viewpoints of persons with neck pain and their care providers. These results can guide the identification of existing measurements instruments for each domain or the development of new ones to measure the burden of neck pain.
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Background: Multiple sclerosis often leads to fatigue and changes in physical behavior (PB). Changes in PB are often assumed as a consequence of fatigue, but effects of interventions that aim to reduce fatigue by improving PB are not sufficient. Since the heterogeneous nature of MS related symptoms, levels of PB of fatigued patients at the start of interventions might vary substantially. Better understanding of the variability by identification of PB subtypes in fatigued patients may help to develop more effective personalized rehabilitation programs in the future. This study aimed to identify PB subtypes in fatigued patients with multiple sclerosis based on multidimensional PB outcome measures. Methods: Baseline accelerometer (Actigraph) data, demographics and clinical characteristics of the TREFAMS-ACE participants (n = 212) were used for secondary analysis. All patients were ambulatory and diagnosed with severe fatigue based on a score of ≥35 on the fatigue subscale of the Checklist Individual Strength (CIS20r). Fifteen PB measures were used derived from 7 day measurements with an accelerometer. Principal component analysis was performed to define key outcome measures for PB and two-step cluster analysis was used to identify PB types. Results: Analysis revealed five key outcome measures: percentage sedentary behavior, total time in prolonged moderate-to-vigorous physical activity, number of sedentary bouts, and two types of change scores between day parts (morning, afternoon and evening). Based on these outcomes three valid PB clusters were derived. Conclusions: Patients with severe MS-related fatigue show three distinct and homogeneous PB subtypes. These PB subtypes, based on a unique set of PB outcome measures, may offer an opportunity to design more individually-tailored interventions in rehabilitation.
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Objectives: Decline in the performance of instrumental activities of daily living (IADL) and mobility may be preceded by symptoms the patient experiences, such as fatigue. The aim of this study is to investigate whether self-reported non-task-specific fatigue is a long-term risk factor for IADL-limitations and/or mobility performance in older adults after 10 years. Methods: A prospective study from two previously conducted cross-sectional studies with 10-year follow-up was conducted among 285 males and 249 females aged 40–79 years at baseline. Fatigue was measured by asking “Did you feel tired within the past 4 weeks?” (males) and “Do you feel tired?” (females). Self-reported IADLs were assessed at baseline and follow-up. Mobility was assessed by the 6-minute walk test. Gender-specific associations between fatigue and IADL-limitations and mobility were estimated by multivariable logistic and linear regression models. Results: A total of 18.6% of males and 28.1% of females were fatigued. After adjustment, the odds ratio for fatigued versus non-fatigued males affected by IADL-limitations was 3.3 (P=0.023). In females, the association was weaker and not statistically significant, with odds ratio being 1.7 (P=0.154). Fatigued males walked 39.1 m shorter distance than those non-fatigued (P=0.048). For fatigued females, the distance was 17.5 m shorter compared to those non-fatigued (P=0.479). Conclusion: Our data suggest that self-reported fatigue may be a long-term risk factor for IADL-limitations and mobility performance in middle-aged and elderly males but possibly not in females.
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Background: Pain assessment is a necessary step in pain management in older people in palliative care. In older people, pain assessment can be challenging due to underreporting and atypical pain manifestations by other distressing symptoms. Anxiety, fatigue, loss of appetite, nausea, insomnia, dyspnoea, and bowel problems correlate with pain in palliative care patients. Insight into these symptoms as predictors may help to identify the underlying presence of pain. This study aimed to develop and test a prediction model for pain in community-dwelling frail older people in palliative care. Methods: In this cross-sectional observational study, community-care nurses from multiple organizations across the Netherlands included eligible patients (life expectancy < 1 year, aged 65+, community-dwelling and frail). The outcome pain and symptoms were assessed by means of the Utrecht Symptom Diary. Also, demographic and illness information, including relevant covariates age, sex and living situation, was collected. Multivariable logistic regression and minimum Akaike Information Criterion(AIC) were used for model development and Receiver Operating Characteristics(ROC)-analysis for model performance. Additionally, predicted probability of pain are given for groups differing in age and sex. Results: A total of 157 patients were included. The final model consisted of insomnia(Odds Ratio[OR] = 2.13, 95% Confidence Interval[CI] = 1.01–1.30), fatigue(OR = 3.47, 95% CI = 1.11–1.43), sex(female)(OR = 3.83, 95% CI = 2.11–9.81) and age(OR=-1.59, 95% CI = 0.92–1.01) as predicting variables. There is an overall decreasing trend for age, older persons suffer less from pain and females have a higher probability of experiencing pain. Model performance was indicated as fair with a sensitivity of 0.74(95% CI = 0.64–0.83) and a positive predictive value of 0.80(95% CI = 0.70–0.88). Conclusions: Insomnia and fatigue are predicting symptoms for pain, especially in women and younger patients. Further testing of the model in external cohorts is needed before clinical adoption.
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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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Background To improve the quality of exercise-based cardiac rehabilitation (CR) in patients with coronary heart disease (CHD) the CR guideline from the Dutch Royal Society for Physiotherapists (KNGF) has been updated. This guideline can be considered an addition to the 2011 Dutch Multidisciplinary CR guideline, as it includes several novel topics. Methods A systematic literature search was performed to formulate conclusions on the efficacy of exercise-based interventions during all CR phases in patients with CHD. Evidence was graded (1–4) according the Dutch evidence-based guideline development (EBRO) criteria. In case of insufficient scientific evidence, recommendations were based on expert opinion. This guideline comprised a structured approach including assessment, treatment and evaluation. Results Recommendations for exercise-based CR were formulated covering the following topics: preoperative physiotherapy, mobilisation during the clinical phase, aerobic exercise, strength training, and relaxation therapy during the outpatient rehabilitation phase, and adoption and monitoring of a physically active lifestyle after outpatient rehabilitation. Conclusions There is strong evidence for the effectiveness of exercise-based CR during all phases of CR. The implementation of this guideline in clinical practice needs further evaluation as well as the maintenance of an active lifestyle after supervised rehabilitation. LinkedIn: https://www.linkedin.com/in/tinusjongert/
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