| 1. |
- Globe, Dennis, et al.
(författare)
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Measuring patient-reported outcomes in haemophilia clinical research
- 2009
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Ingår i: Haemophilia. - : Wiley. - 1351-8216 .- 1365-2516. ; 15:4, s. 843-852
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Forskningsöversikt (refereegranskat)abstract
- Patient-reported outcome (PRO) measures have been used to assess quality of life and health state preferences from the patient's perspective. However, they have not been fully utilized in haemophilia clinical practice and research. A series of meetings were convened to review and document the state of the art in PROs relevant to haemophilia. Experts developed a process for selection of measures and identified published measures of health-related quality of life (HRQoL) relevant to patients with haemophilia. These were synthesized and reviewed. Patient preference measures were also identified and reviewed. Although the majority of measures were developed for and validated in adults, several measures were identified for use in paediatric populations. This paper recommends an approach to the selection of PROs for application in haemophilia clinical research and practice and identifies several potential measures relevant for application in haemophilia clinical research and practice.
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| 2. |
- Bullinger, M, et al.
(författare)
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The psychological cost of aircraft noise for children
- 1999
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Ingår i: International Journal of Hygiene and Environmental Medicine. - 0934-8859. ; 202:2-4, s. 127-138
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Tidskriftsartikel (refereegranskat)abstract
- Psychological effects of aircraft noise exposure on children have only recently been addressed in the References. The current study took advantage of a natural experiment caused by the opening of a major new airport, exposing children in a formerly quiet area to aircraft noise. In this prospective longitudinal investigation, which employed nan-exposed control groups, effects of aircraft noise prior to and subsequent to inauguration of the new airport as well as effects of chronic noise and its reduction at the old airport (6 and 18 month post relocation), were studied in 326 children aged 9 to 13 years. The psychological health of children was investigated with a standardized quality of life scale as well as with a motivational measure derived from the Glass and Singer stress aftereffects paradigm. In addition a self report noise annoyance scale was used. In the children studied at the two airports over three time points, results showed a significant decrease of total quality of life 18 month after aircraft noise exposure as well as a motivational deficits operationalized by fewer attempts to solve insoluble puzzles in the new airport area. Parallel shifts in children's attributions for failure were also noted. At the old airport parallel impairments were present before the airport relocation but subsided there after. These findings are in accord with reports of impaired psychological health after noise exposure and indicate the relevance of monitoring psychological parameters as a function of environmental stressors among children.
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| 5. |
- Khawaji, Mohammed, et al.
(författare)
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Bone density and health-related quality of life in adult patients with severe haemophilia.
- 2011
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Ingår i: Haemophilia. - : Wiley. - 1351-8216. ; 17:2, s. 304-311
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Tidskriftsartikel (refereegranskat)abstract
- Summary. Severe haemophilia and reduced bone density can negatively influence perception of patient's health-related quality of life (HRQoL), especially considering future aspects, the risk of losing independence or pain suffering. The aim of this study was to assess levels of HRQoL in severe haemophilia patients and to compare HRQoL to those of the general population as well as to determine whether reduced bone density is correlated to the perceived HRQoL. Patients were divided into two groups based on timing of being treated with prophylaxis: Group A (started prophylaxis at age of ≤3 years; n = 22); Group B (at age of >3 years; n = 15). The bone mineral density (BMD g cm(-2) ) of different measured sites was measured by dual energy X-ray absorptiometry (DXA). HRQoL was assessed using SF-36 questionnaire. Group A have mean BMD T-score >-1.0 (i.e. normal score) at all measured sites, and have almost similar scores in the SF-36 domains compared with the reference population. Group B have mean BMD T-score <-1.0 at hip region, and >-1.0 at lumbar spine and total body, and their scores in the SF-36 domains were lower compared with the reference population. Moreover, significant correlations were found between BMD at femoral neck and total body with physical domains. With adequate long-term prophylaxis since early childhood, adult patients with haemophilia report a comparable BMD and HRQoL to the Swedish reference population. Reduced BMD in group B correlated with impaired physical health, which underscores the importance of early onset of adequate prophylactic treatment.
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| 6. |
- Lindvall, Karin, et al.
(författare)
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Quality of life in adult patients with haemophilia - a single centre experience from Sweden.
- 2012
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Ingår i: Haemophilia. - : Wiley. - 1351-8216. ; 18:4, s. 527-531
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Tidskriftsartikel (refereegranskat)abstract
- Summary: Increased or maintained health and quality of life (HRQoL) are essential goals in health care among patients with a chronic disease. To gain an understanding of HRQoL in patients with haemophilia at the Haemophilia Treatment Centre in Malmö, Sweden, patients seen from 2004-2008 were asked to complete the Short form Health Survey, SF-36, also answering to what extent haemophilia, physically and mentally, interferes with their daily life at their annual check-up. Data were extracted from the UMAS Haemophilia Database. Interference of haemophilia in daily life was estimated using a Visual Analogue Scale. A total of 105/144 haemophilia patients were included in the study (73%); 28 mildly, 21 moderately and 56 severely affected. The median age of patients at study entry was 44.0 years (range 18-84 years). The comparison of SF-36 data of Swedish haemophilia patients with the general Swedish male population yielded no significant differences in age groups 15-24, 25-34 and 65-74 years. Patients in age groups 35-44 years, 45-54 years and 55-64 years were significantly impaired in some of their HRQoL domains. For severely affected patients who filled in SF-36 over a period of 5 years no statistical differences in HRQoL were found. For patients undergoing orthopaedic surgery HRQoL increased in most SF-36 domains. Patients reported in general on the VAS that they feel 'somehow' interfered in their daily life due to haemophilia. The results indicate a need for continuous monitoring of HRQoL to identify an increased need of care in the ageing haemophilia population.
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| 7. |
- Schramm, W., et al.
(författare)
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Haemophilia Care in Europe: the ESCHQoL study
- 2012
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Ingår i: Haemophilia. - : Wiley. - 1351-8216. ; 18:5, s. 729-737
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Tidskriftsartikel (refereegranskat)abstract
- The aim of this study was to determine the clinical conditions of patients with haemophilia within Europe as recommended by the European Commission. In this multicentre, cross-sectional, ambispective study, conducted within 21 European countries patients' clinical data were collected, amongst others haemophilia type, severity, treatment pattern, use of factor products, bleeding, orthopaedic joint scores and infections. A total of 1400 patients, 84.3% with haemophilia A and 15.7% with haemophilia B were enrolled by 42 centres between 2004 and 2006. Thereof, 417 were children (30.0%) and 983 were adults (70.0%). About 70% of patients had severe factor deficiency (<1%). More than half of the adults were carriers of chronic infections (12.6% HIV, 55.8% HCV), compared to only 3.8% children (no HIV, 2.9% HCV). Patients were grouped according to per capita amount of clotting factor used in patients' region of residence in 2005: region 1: >5 IU; region 2: 25 IU; region 3: <2 IU. Paediatric and adult patients in region 3 had median numbers of three and eight joint bleeds, respectively, with worse joint scores compared to region 1 with zero and one bleed. Prophylactic therapy was used in only 31.3% children and 8.9% adults with severe haemophilia in region 3 compared to 93.7% and 54.1%, respectively, in region 1. Statistical analysis revealed that residence in areas with low factor consumption/availability is the most prominent risk factor for joint disease. Access of European patients with haemophilia to optimal care with safe factor VIII concentrates is limited and depends on the region of residence.
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