Marfan syndrome (MFS) is a multisystemic, autosomal dominant connective tissue disorder that occurs de novo in 25%. In many families, parent and child(ren) are affected, which may increase distress in parents. To assess distress, 42 mothers (29% MFS) and 25 fathers (60% MFS) of 43 affected children, completed the validated screening‐questionnaire Distress thermometer for parents of a chronically ill child, including questions on overall distress (score 0–10; ≥4 denoting “clinical distress”) and everyday problems (score 0–36). Data were compared to 1,134 control‐group‐parents of healthy children. Mothers reported significantly less overall distress (2, 1–4 vs. 3, 1–6; p = .049; r = −.07) and total everyday problems (3, 0–6 vs. 4, 1–8; p = .03; r = −.08) compared to control‐group‐mothers. Mothers without MFS reported significantly less overall distress compared to mothers with MFS, both of a child with MFS (1, 0–4 vs. 3.5, 2–5; p = .039; r = −.17). No significant differences were found between the father‐groups, nor between the group of healthy parents of an affected child living together with an affected partner compared to control‐group‐parents. No differences in percentages of clinical distress were reported between mothers and control‐group‐mothers (33 vs. 42%); fathers and control‐group‐fathers (28 vs. 32%); nor between the other groups. Distress was not associated with the children's MFS characteristics. Concluding, parents of a child with MFS did not show more clinical distress compared to parents of healthy children. However, clinical distress was reported in approximately one‐third and may increase in case of acute medical complications. We advise monitoring distress in parents of a child with MFS to provide targeted support.
DOCUMENT
Screening for psychological distress in patients with cancer is currently being debated in the British Journal of Cancer. Screening has been recommended, as elevated levels of distress have been consistently observed and clinicians tend to overlook the need of psychological support (Carlson et al, 2012; Carlson et al, 2013; National Comprehensive Cancer Network, 2013). On the other hand, it has been argued that screening should not be implemented, as the true benefit of screening and subsequent treatment of psychological distress is far from being definitively proven (Coyne, 2013). Recent findings on human resilience in the face of potentially traumatic events (PTEs) provide a new perspective on detecting and treating psychological distress in patients with cancer. Humans show strong resilience in the face of potentially traumatic events, such as cancer diagnosis and treatment (Bonanno et al, 2011). This observation leads us to propose two alternative approaches towards detecting and treating psychological distress in patients with cancer: ‘screening for psychological distress’ and ‘supporting resilience and case finding’.
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Hematological malignancies and treatment with hematopoietic SCT are known to affect patients’ quality of life. The problem profile and care needs of this patient group need clarification, however. This study aimed to assess distress, problems and care needs after allo- or auto-SCT, and to identify risk factors for distress, problems or care needs. In this cross-sectional study, patients treated with allo-SCT or auto-SCT for hematological malignancies completed the Distress Thermometer and Problem List. Three patient groups were created: 0–1, 1–2.5 and 2.5–5.5 years after transplantation. After allo-SCT, distress and the number of problems tended to be lower with longer follow-up. After auto-SCT, distress was highest at 1–2.5 year(s). Patients mainly reported physical problems, followed by cognitive-emotional and practical problems. A minority reported care needs. Risk factors for distress as well as problems after allo-SCT included younger age, shorter time after transplantation and GVHD. A risk factor for distress as well as problems after auto-SCT was the presence of comorbid diseases. Up to 5 years after auto-SCT or allo-SCT, patients continue to experience distress and problems. Judged by prevalence, physical problems are first priority in supportive care, followed by cognitive-emotional and practical problems.
DOCUMENT
Chronische primaire pijn (pijn zonder duidelijke biomedische oorzaak) is geassocieerd met significante emotionele distress of functionele beperkingen (in activiteiten in het dagelijkse leven of sociale rollen)1,2 Bij zorgzoekende mensen met chronische primaire pijn is vaak sprake van beweegarmoede, verminderde zelfredzaamheid, slaapproblemen, suboptimaal functioneren in werk, hobby en thuis, langdurig ziekteverzuim en sociale isolatie3. Aangezien er geen effectieve behandeling bestaat die chronische pijn kan wegnemen, ligt de fysiotherapeutische focus bij behandeling op de vermindering van de ervaren beperkingen in het dagelijkse functioneren ondanks pijn, het hervatten van betekenisvolle activiteiten en participatie en het verbeteren van kwaliteit van leven. Fysiotherapeuten vragen “Hoe kunnen wij het type beweeggedrag van mensen met chronische pijn objectief meten zodat we hen beter kunnen ondersteunen in het verminderen van beperkingen in het dagelijks functioneren?” Nauwkeurige en objectieve instrumenten voor het meten van het type beweegpatronen zijn belangrijk om functionele beperkingen bij patiënten met chronische pijn goed te kunnen analyseren, om daarop een gepersonaliseerde interventie op toe te passen en vervolgens de resultaten te evalueren. De huidige commerciële beweegsensoren zijn (nog niet) in staat om de informatie te genereren die fysiotherapeuten nodig hebben, omdat vaak alleen rekening wordt gehouden met de kwantitatieve (hoeveelheid en intensiteit) aspecten van beweeggedrag en niet het dynamische of relationele aspect van beweeggedrag . Volgens de huidige theorieën moeten binnen het beweeggedrag van patiënten met chronische pijn verschillende beweegpatronen (vermijders, volharders en de vermijders/volharders) onderscheiden kunnen worden. Het valide identificeren en betrouwbaar meetbaar maken van deze beweegpatronen en de daarbij horende in stand houdende factoren (relationele aspecten van beweeggedrag) is een eerste stap die gaat helpen met het implementeren van een meer gepersonaliseerde fysiotherapeutische aanpak van patiënten met chronische pijn. Dit kan leiden tot beter functioneren, hogere kwaliteit van leven en betere uitkomsten In de zorg.
