16 research outputs found

    Patients With Isolated Craniofacial Dysplasia Report Better Quality of Life Compared With Those With Craniofacial Dysplasia and Extracranial Involvement

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    Purpose:Craniofacial fibrous dysplasia (CFD) is a subtype of fibrous dysplasia/McCune-Albright syndrome (FD/MAS) characterized by FD lesions in one or more of the skull bones. The orbit is often involved, with facial pain, facial deformity, and increased risk of compressive optic neuropathy as associated clinical manifestations possibly leading to altered illness perceptions and impairments in quality of life(QoL). The aim of this study was to evaluate illness perceptions and QoL in patients with CFD among our FD/MAS cohort.Methods:One hundred ninety-one patients were included. Illness perceptions and QoL were assessed by using validated questionnaires, that is, the Illness Perceptions Questionnaire-Revised and the Short-Form 36. Patients were first grouped as CFD versus non-CFD, a second selection was based on the presence of "Isolated CFD" versus "CFD+PFD/MAS." Non-CFD patients were grouped as monostotic fibrous dysplasia "MFD" versus polyostotic "PFD/MAS."Results:Patients with isolated CFD attributed less symptoms to their disease compared with patients with CFD+PFD/MAS (p < 0.05). Furthermore, patients with isolated CFD reported better QoL on all domains (except role emotional and mental health) compared with patients with CFD+PFD/MAS (p < 0.05). Patients with isolated CFD also reported better QoL compared with non-CFD groups (on 3 out of 8 subscales) (p < 0.05).Conclusions:Patients with isolated CFD attribute less symptoms to their disease and report better QoL compared with patients with CFD with extracranial involvement or FD without cranial involvement. These findings indicate that craniofacial involvement alone is not sufficient to cause negative illness perceptions and impairments in QoL. Therefore, it can be postulated that isolated CFD should be considered a unique patient subtype within the spectrum of FD/MAS patients.Diabetes mellitus: pathophysiological changes and therap

    Distribution of Buruli ulcer lesions over body surface area in a large case series in Ghana: uncovering clues for mode of transmission

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    We studied hospital records of 750 consecutive Buruli ulcer patients in a highly endemic area in Amansie West, Ghana. Although more Buruli ulcer lesions were found on the right side of the body, comparison of lesions on arms and legs showed a bilaterally symmetrical distribution. Upper and lower extremities were affected equally by Buruli ulcers, if correction was made for differences in body surface area. Patients from outside the Amansie West district presented significantly more often with ulcerated lesions, which were more often located on a joint, than patients who lived in Amansie West, suggesting that longer travel distance might have caused delay. Our observations of a bilaterally symmetrical distribution of lesions on extremities and equal upper and lower extremity involvement are compatible with a mode of transmission that involves passive exposure of exposed body parts. An asymmetrical distribution of lesions was found in an earlier study, suggesting transmission by vegetation near the ground, through activities like farming or play. Perhaps, transmission in or near water, e.g. by bites of infected aquatic insects, might favour the pattern of distribution of lesions that we found

    Public preferences for marine plastic litter management across Europe

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    Plastic pollution is one of the most challenging problems affecting the marine environment of our time. Based on a unique dataset covering four European seas and eight European countries, this paper adds to the limited empirical evidence base related to the societal welfare effects of marine litter management. We use a discrete choice experiment to elicit public willingness-to-pay (WTP) for macro and micro plastic removal to achieve Good Environmental Status across European seas as required by the European Marine Strategy Framework Directive. Using a common valuation design and following best-practice guidelines, we draw comparisons between countries, seas and policy contexts. European citizens have strong preferences to improve the environmental status of the marine environment by removing and reducing both micro and macro plastic litter and implementing preventive measures favouring a pan-European approach. However, public WTP estimates differ significantly across European countries and seas. We explain why and discuss implications for policymaking

    Neuroticism and attachment insecurity as predictors of bereavement outcome

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    Adult attachment dimensions as well as the personality trait neuroticism have been shown to be related to psychological adjustment after bereavement. No investigations so far have studied the relative contribution of these constructs to grief and depression. In our study of 219 bereaved parents, the two adult attachment dimensions, attachment anxiety and attachment avoidance, were compared to the personality trait neuroticism in predicting psychological adjustment. The attachment dimensions explained a unique part over and above neuroticism, but contrary to expectations, neuroticism explained more variance than attachment dimensions. Implications are discussed

    Patterns of attachment and parents' adjustment to the death of their child

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    The impact of adult attachment on psychological adjustment among bereaved parents and the mediating effect of relationship satisfaction were examined among a sample of 219 couples of parents. Data collection took place 6, 13, and 20 months after loss. Use of the actor partner interdependence model in multilevel regression analysis enabled exploration of both individual as well as partner attachment as predictors of grief and depression. Results indicated that the more insecurely attached parents were (on both avoidance and anxiety attachment), the higher the symptoms of grief and depression. Neither the attachment pattern of the partner nor similarity of attachment within the couple had any influence on psychological adjustment of the parent. Marital satisfaction partially mediated the association of anxious attachment with symptomatology. Contrary to previous research findings, avoidant attachment was associated with high grief intensity. These findings challenge the notion that the avoidantly attached are resilient

    Factors associated with functional limitations and subsequent employment or schooling in Buruli ulcer patients

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    OBJECTIVES: To evaluate former Buruli ulcer disease (BUD) patients to assess the factors associated with functional limitations and subsequent employment or schooling. METHODS: The previously validated Buruli ulcer functional limitation score (BUFLS) questionnaire and interviews about educational and professional consequences incurred by BUD. RESULTS: Of 638 participants, 362 (57%) had a functional limitation after a median period of almost 4 years after treatment for BUD. A lesion on a joint, older age, female gender, a lesion on a distal part of an extremity and a persistent wound were found to be independent risk factors for stopping work or education. The same risk factors applied to the development of a functional limitation. Both functional limitations and financial difficulties due to BUD disease often led to job loss and school dropout. CONCLUSIONS: Rehabilitation programmes are urgently needed to diminish the suffering from the functional limitations and employment or schooling problems caused by BUD
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