ObjectiveMajor issues in children with Marfan syndrome (MFS) are pain, fatigue and joint hypermobility which might influence functional ability. We recently studied these aspects in children with Ehlers-Danlos syndrome hypermobility type (EDS-HT) and hypermobility spectrum disorders (HSD). What can be learned from this research regarding diagnostics and treatment for children with MFS and children with EDS other than EDS-HT? Methods We followed 101 children and adolescents with EDS and HSD for three years and studied the presence of pain, fatigue and functional ability as well as the presence of multi-systemic complaints (eg. dysautonomia). In 255 adolescents and adults with EDS and HSD, we studied the presence of pain, fatigue and functional ability. In 19 children and their parents with Marfan syndrome, we performed qualitative research regarding pain, fatigue and functional ability.ResultsChildren with a high incidence of multi-systemic complaints, and significant pain and fatigue at baseline were most likely to have a deteriorating trajectory of functional impairment. Besides joint hypermobility and chronic pain, generalized hyperalgesia was also found, possibly indicating central nervous system involvement.We stated that in children and adolescents with EDS-HT and HSD, identifying risk profiles are important to clarify the pathological mechanisms involved, and to develop interdisciplinary treatment strategies. Parents perceive a large impact of MFS on daily life of children, parents and family. Adolescents with MFS perceived problems in keeping up with peers in school, work, sports, leisure and friendships/relationships and perceived to be and feel different from peers due to appearance and disabilities. Conclusion Based on lessons learned in EDS-HT and HSD, we designed a longitudinal follow-up study in 150 children and adolescents with MFS and EDS in the Netherlands and Belgium. Disease characteristics, functional ability, exercise capacity, symptoms of pain and fatigue and psycho-social wellbeing will be studied. We will identify risk profiles for functional decline and develop therapeutic rehabilitation strategies. The first results of qualitative research in MFS adolescents warrants awareness and individual tailored physical, psychosocial, educational and environmental support programs to improve physical functioning and empowerment of teenagers with MFS. Longitudinal studies have been started.
DOCUMENT
DOCUMENT
Chronic widespread pain is highly present in patients with the Ehlers-Danlos syndrome hypermobility type (EDS-HT), but up to now, evidence for generalized hyperalgesia is lacking. The aim of this study is to investigate whether pressure pain thresholds (PPTs) at both symptomatic and asymptomatic body areas differ in EDS-HT patients compared to healthy subjects. Twenty-three women with EDS-HT and 23 gender- and age-matched healthy controls participated. All subjects marked on Margolis Pain Diagram where they felt pain lasting longer than 24 h in the past 4 weeks. Then, they completed several questionnaires assessing pain cognitions, fatigue, disability, and general health status, in order to take the possible influence of these factors on PPTs into account. Patients also completed a form concerning the type of pain they experienced. Thereupon, a blinded researcher assessed PPTs at 14 body locations on the trunk and extremities. PPTs were compared for the two complete groups. In addition, PPTs of patients and controls who did not report pain in a respective zone were compared. PPTs of the patients were significantly lower compared to those of the control group, also when pain-free samples per zone were compared. The mean (SD) PPT was 2.9 (1.62) kg/cm(2) in the EDS-HT patients and 5.2 (1.88) kg/cm(2) in the controls (P < 0.001). No confounding factors responsible for the observed differences could be revealed. In half of the patient group, a predominantly neuropathic pain component was likely present. This study provides evidence for the existence of hyperalgesia even in asymptomatic areas (generalized secondary hyperalgesia). The generalized hyperalgesia may represent the involvement of a sensitized central nervous system, which inquires an adapted pain management for this patient group.
DOCUMENT
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.
MULTIFILE
Stimulating patients to approach their pain from a biopsychosocial perspective is central to chronic pain rehabilitation. However, conversations between patients and their healthcare professionals about the social and psychological factors that may contribute to the continuation of pain and disability can be challenging. The current scientific literature does not sufficiently pinpoint the difficulties in patient–practitioner interaction on chronic pain, and it falls short of answering the question of how a joint exploration of the social and psychological factors that might be involved in the patient’s pain and evolving disability can be enhanced. In this theoretical article, we introduce discursive psychology as a potentially valuable research perspective to gain a better understanding of the difficulties in patient–practitioner interaction in the context of chronic pain rehabilitation. Discursive psychology focuses on features of people’s talk (e.g. that of patients and practitioners) and is concerned with the social practices that people perform as part of a specific interactional context. In this paper, we provide an introduction to the main theoretical notions of discursive psychology. We illustrate how discursive psychological analyses can inform our understanding of the specific sensitivities in conversations between patients with chronic pain and their practitioners. Finally, we address how a better understanding of these sensitivities offers a gateway towards improving these conversations. Een belangrijk principe in revalidatie bij chronische pijn is de benadering van de pijn vanuit een biopsychosociaal perspectief. Het blijkt echter een uitdaging voor patiënten en behandelaars om de sociale en psychologische factoren die een rol spelen bij chronische pijn te bespreken. In de huidige wetenschappelijke literatuur is hier nog niet voldoende aandacht voor; en wordt geen perspectief geboden voor verbetering van de gezamenlijke verkenning van sociale en psychologische factoren. In dit theoretische artikel introduceren we discursieve psychologie als een mogelijk waardevol onderzoeksperspectief om een beter begrip tot stand te brengen van de complexiteit van interactie in de context van chronische pijn revalidatie. Discursieve psychologie richt zich op kenmerken van interactie, in het bijzonder de sociale praktijken die tot stand worden gebracht binnen een specifieke interactionele context. We beschrijven de belangrijkste theoretische principes van discursieve psychologie en illustreren hoe een DP analyse licht kan werpen op de specifieke gevoeligheden in conversaties tussen patiënten met chronische pijn en hun behandelaars. Tot slot bespreken we hoe een beter begrip van deze gevoeligheden een ingang biedt tot het verbeteren van deze conversaties.
DOCUMENT
Background: The increase in life expectancy has brought about a higher prevalence of chronic illnesses among older people. Objectives: To identify common chronic illnesses among older adults, to examine the influence of such conditions on their Health-Related Quality of Life (HRQoL), and to determine factors predicting their HRQoL. Method: A population-based cross-sectional study was conducted involving 377 individuals aged 60 years and above who were selected using multi-stage sampling techniques in Olorunda Local Government, Osun State, Nigeria. Data were collected using an interviewer-administered questionnaire comprising socio-demographic characteristics, chronic illnesses, and the World Health Organization quality of life instrument (WHOQOL-BREF) containing physical health, psychological, social relationships, and environmental domains. Results: About half (51.5%) of the respondents reported at least one chronic illness which has lasted for 1–5 years (43.3%). The prevalence of hypertension was 36.1%, diabetes 13.9% and arthritis 13.4%. Respondents with chronic illness had significantly lower HRQoL overall and in the physical health, social relationships and the environmental domains (all p<0.05) compared to those without a chronic illness. Factors that predicted HRQoL include age, marital status, level of education, the presence of chronic illness and prognosis of the condition. Conclusion: This study concluded that chronic illness is prevalent in Nigerian older people and significantly influence their HRQoL. Age, marital status, and level of education were associated with HRQoL in this group.
DOCUMENT
Blended behavior change interventions combine therapeutic guidance with online care. This new way of delivering health care is supposed to stimulate patients with chronic somatic disorders in taking an active role in their disease management. However, knowledge about the effectiveness of blended behavior change interventions and how they should be composed is scattered. This comprehensive systematic review aimed to provide an overview of characteristics and effectiveness of blended behavior change interventions for patients with chronic somatic disorders.
LINK
INTRODUCTION: Lowered pressure pain thresholds have been demonstrated in adults with Ehlers-Danlos Hypermobility type(EDS-HT), however it remains unclear if these findings are also present in children. Therefore, the objectives of the study were to: (1)determine if generalized hyperalgesia is present in Hypermobility syndrome (HMS)/EDS-HT children, (2)explore potential differences in pressure pain thresholds between HMS/EDS-HT children and adults, and (3)determine the discriminative value of generalized hyperalgesia.METHODS: Patients classified in one of three groups: HMS/EDS-HT, hypermobile (Beighton score ≥4/9) and healthy controls. Descriptive data of age, gender, body mass index, Beighton score, skin laxity and medication usage were collected. Generalized hyperalgesia was quantified by the averaged pressure pain thresholds collected from 12 locations. The following confounders were collected: pain locations/intensity, fatigue, psychological distress. Comparisons between HMS/EDS-HT children and normative values, between children and adults with HMS/EDS-HT, corrected confounders, were analysed with MANCOVA. The discriminative value of generalized hyperalgesia employed in order to differentiate between HMS/EDS-HT, hypermobile and controls was quantified with logistic regression.RESULTS: Significantly lower pressure pain thresholds were found in children with HMS/EDS-HT compared to normative values (range: -22.0% to -59.0%, p=<.05). When applying a threshold of 30.8 N/cm(2) for males and 29.0 N/cm(2) for females, the presence of generalized hyperalgesia discriminated between individuals with HMS/EDS-HT, hypermobile and healthy controls (odds ratio=6.0).CONCLUSION: Children and adults with HMS/EDS-HT are characterized by hypermobility, chronic pain, as well as generalized hyperalgesia. The presence of generalized hyperalgesia may indicate involvement of the central nervous system in the development of chronic pain. This article is protected by copyright. All rights reserved.
DOCUMENT
Chronic pain rehabilitation programs are aimed at helping patients to increase their functioning despite being in pain, thereby improving their quality of life. However, conversations between patients and practitioners about how the patient could deal with his/her pain and pain-related disabilities in a different way can be interactionally challenging. This study adopts a discursive psychological perspective to explore how pain-related disability is negotiated by patients and practitioners during consultations. The analysis shows that pain-related disability is treated by both patients and practitioners as negotiable rather than a fixed reality. Moreover, it shows that patients’ and practitioners’ negotiations of disability are subject to issues of agency, accountability, and blame, and it provides insight into the interactional dilemmas that are at stake, both for patients and practitioners. Revalidatieprogramma’s voor patiënten met chronische pijn zijn gericht op het verbeteren van het functioneren ondanks de pijn, waardoor kwaliteit van leven wordt bevorderd. Conversaties tussen patiënten en behandelaars over de manier waarop de patiënt kan omgaan met de pijn en gerelateerde beperkingen kunnen interactionele uitdagingen met zich meebrengen. Dit hoofdstuk verkent vanuit discursief-psychologisch perspectief hoe beperkingen worden onderhandeld door patiënten en behandelaars in consulten. De analyse toont aan dat de beperkingen worden behandeld als onderhandelbaar in plaats van als een onveranderbare werkelijkheid. Bovendien toont de analyse dat in deze onderhandelingen bepaalde issues relevant worden gemaakt, zoals ‘agency’, verantwoordelijkheid en schuld. Inzicht wordt geboden in de interactionele dilemma’s die op het spel staan voor zowel patiënten als behandelaars.
DOCUMENT
