ACHTERGROND EN DOELAspecifieke lage rug- en/of nekpijn is een veel voorkomende klacht en kan tot veel beperkingen in ADL leiden. De vraag is “wat is de toegevoegde waarde van een self-tracking systeem de LumoBack” voor de fysiotherapie.METHODEIn dit onderzoek is geobserveerd of patiënten met aspeci eke lage rug en/of nekklachten (ALRNK) na twee weken gebruik van de LumoBack en reguliere fysiotherapie (groep A) minder moeite in activiteiten hebben en minder pijn ervaren, dan patiënten die alleen twee weken reguliere fysiotherapie (groep B) kregen. Het onderzoek bestond uit een voor- en nameting waarbij de VAS, de PSK en de QBPDS werden afgenomen.RESULTATENUit de resultaten blijkt dat er na twee weken geen signi cant verschil is gevonden tussen beide groepen. Wel is de verbetering in VAS1 en PSK3 signi cant verschillend tussen beide groepen. Groep A laat grotere verbeteringen zien met een klinisch relevante vermindering in vas 1 en vas 2.
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Background: Follow‑up of curatively treated primary breast cancer patients consists of surveillance and aftercare and is currently mostly the same for all patients. A more personalized approach, based on patients’ individual risk of recurrence and personal needs and preferences, may reduce patient burden and reduce (healthcare) costs. The NABOR study will examine the (cost‑)effectiveness of personalized surveillance (PSP) and personalized aftercare plans (PAP) on patient‑reported cancer worry, self‑rated and overall quality of life and (cost‑)effectiveness. Methods: A prospective multicenter multiple interrupted time series (MITs) design is being used. In this design, 10 participating hospitals will be observed for a period of eighteen months, while they ‑stepwise‑ will transit from care as usual to PSPs and PAPs. The PSP contains decisions on the surveillance trajectory based on individual risks and needs, assessed with the ‘Breast Cancer Surveillance Decision Aid’ including the INFLUENCE prediction tool. The PAP contains decisions on the aftercare trajectory based on individual needs and preferences and available care resources, which decision‑making is supported by a patient decision aid. Patients are non‑metastasized female primary breast cancer patients (N= 1040) who are curatively treated and start follow‑up care. Patient reported outcomes will be measured at five points in time during two years of follow‑up care (starting about one year after treatment and every six months thereafter). In addition, data on diagnostics and hospital visits from patients’ Electronical Health Records (EHR) will be gathered. Primary outcomes are patient‑reported cancer worry (Cancer Worry Scale) and over‑all quality of life (as assessed with EQ‑VAS score). Secondary outcomes include health care costs and resource use, health‑related quality of life (as measured with EQ5D‑5L/SF‑12/EORTC‑QLQ‑C30), risk perception, shared decision‑making, patient satisfaction, societal participation, and cost‑effectiveness. Next, the uptake and appreciation of personalized plans and patients’ experiences of their decision‑making process will be evaluated. Discussion: This study will contribute to insight in the (cost‑)effectiveness of personalized follow‑up care and contributes to development of uniform evidence‑based guidelines, stimulating sustainable implementation of personalized surveillance and aftercare plans. Trial registration: Study sponsor: ZonMw. Retrospectively registered at ClinicalTrials.gov (2023), ID: NCT05975437.
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In dit artikel wordt beknopt beschreven wat de aanleiding was van dit project en hoe de wenselijke multidisciplinaire behandeling er uit zou kunnen zien. Vervolgens wordt de uitvoering van het project beschreven en welke meetinstrumenten hierbij worden gehanteerd. Tot slot wordt in het kort ingegaan op het uiteindelijke multidisciplinaire pijnprotocol zoals dat momenteel wordt gebruikt.
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OBJECTIVE: To evaluate the effect of doxepin hydrochloride 5% cream on reducing pruritus in burn scar patients compared to a placebo cream.METHOD: We conducted a multicenter triple-blind randomized clinical placebo-controlled crossover trial in which burn patients ≥18 years with an itch intensity ≥3 on a Visual Analogue Scale (VAS) were randomized between a doxepin-placebo or placebo-doxepin treatment protocol. Patients used each cream during two weeks with a wash-out period of one week in between. Primary outcome was change in itch intensity in two weeks' time using the VAS. Secondary outcome included the impact of itch (Burn Itch Questionnaire). Other parameters were the use of hydrating cream, silicon treatment, pressure garments, and other antipruritic medication.RESULTS: Twenty-seven patients were included. The change in itch intensity (VAS) was not different during the doxepin and placebo period (p=0.994); neither the doxepin cream nor placebo cream reduced itch intensity. However, based on the Burn Itch Questionnaire, we observed a statistically significant decrease in itch intensity and improvement in impact scores in both treatment groups, but no difference in the degree of reduction between the groups.CONCLUSION: Doxepin cream was not effective in reducing pruritus in our burn patient study population.
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In het kader van het onderzoeksproject ZINnig kwam de wens naar voren te inventariseren welke middelen er bestaan voor het gezamenlijk opstellen van logopedische behandeldoelen samen met kinderen. Een werkgroep vanuit de praktijkpartners, bestaande uit de logopedisten Rianne Dommisse, Lisette van der Velpen, Mirjam Koedijk en Alice Maas heeft deze vraag opgepakt. De uitkomst van dit deelproject is dit werkdocument. De logopedist bepaalt misschien al samen met het kind de behandeldoelen, maar doet dit vaak onbewust. Dit werkdocument bevat een eerste aanzet van een beslisboom voor het opstellen van behandeldoelen samen met het kind, en een lijst van mogelijke hulpmiddelen hiervoor.
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De set vragenlijsten is zorgvuldig samengesteld en getest. Deze vragenlijsten zijn een hulpmiddel om: 1. De mate van belasting van de mantelzorger in beeld te brengen 2. De ervaren kwaliteit van leven in beeld te brengen 3. De ervaren mate van sociale steun in beeld te brengen Door deze lijsten ontstaat een beeld van de situatie en worden behoeften zichtbaar en bespreekbaar. Eén van de doelen van deze set van vragenlijsten is dus om zicht te krijgen op de ondersteuningsbehoefte van mantelzorgers. Met de lijsten kan ook dreigende overbelasting gesignaleerd worden. . Deze overbelasting kan ook ontstaan doordat anderen in het netwerk afhaken gezien de complexiteit van de problematiek. Als de lijsten zowel aan het begin van een begeleidingstraject afgenomen worden als in de loop of aan het einde van het traject kunnen veranderingen zichtbaar gemaakt worden.. Op deze wijze kan onderzocht worden of de ondersteuning van NAH consulenten of andere hulpverleners een positief effect heeft gehad
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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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The aim of the present study was to investigate the nature and prevalence of nonspecific somatic symptoms, pain and catastrophizing in children with Heritable Connective Tissue Disorders (HCTD), and to determine their association with disability. This observational, multicenter study included 127 children, aged 4–18 years, with Marfan syndrome (MFS) (59%), Loeys-Dietz syndrome (LDS) (8%), Ehlers-Danlos syndromes (EDS) (12%) and hypermobile Ehlers-Danlos syndrome (hEDS) (23%). The assessments included the Children's Somatization Inventory or parent proxy (CSI, PCSI), pain visual-analogue scale (VAS), SUPERKIDZ body diagram, Pain Catastrophizing Scale Child or parent proxy (PCS-C, PCS-P) and Childhood Health Assessment Questionnaire (CHAQ-30). Data from children aged ≥8 years were compared to normative data. In children ≥ 8 years (n = 90), pain was present in 59%, with a median of 4 (IQR = 3–9) pain areas. Compared to normative data, the HCTD group reported significantly higher on the CSI (p ≤ 0.001, d = 0.85), VAS pain intensity (p ≤ 0.001, d = 1.22) and CHAQ-30 (p ≤ 0.001, d = 1.16) and lower on the PCS-C (p = 0.017, d = −0.82) and PCS-P (p ≤ 0.001, d = −0.49). The intensity of nonspecific somatic symptoms and pain explained 45% of the variance in disability (r2 = 0.45 F(2,48) = 19.70, p ≤ 0.001). In children ≤ 7 years (n = 37), pain was present in 35% with a median of 5(IQR = 1–13) pain areas. The mean(SD) VAS scores for pain intensity was 1.5(2.9). Functional disability was moderately correlated to the number of pain areas (r = 0.56, p ≤ 0.001), intensity of nonspecific somatic symptoms (r = 0.63, p ≤ 0.001) and pain (r = 0.83, p ≤ 0.001). In conclusion, this study supports the need for comprehensive assessment of nonspecific somatic symptoms, pain, and disability in children with HCTD to allow tailored treatment.
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Eindrapportage Doel van het project is om kennis te genereren om zorg en ondersteuning rond mensen met NAH te verbeteren. Het gaat hier in het bijzonder om de ondersteuning van familieleden als mantelzorgers en andere informele inzet, zoals van vrienden en buurtgenoten
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