| 1. |
- Osooli, M, et al.
(författare)
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Comparative burden of arthropathy in mild haemophilia : a register-based study in Sweden
- 2017
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Ingår i: Haemophilia. - : Wiley. - 1351-8216. ; 23:2, s. E79-E86
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Tidskriftsartikel (refereegranskat)abstract
- INTRODUCTION: Mild haemophilia is a congenital bleeding disorder affecting males. The burden of arthropathy in mild haemophilia has not been comprehensively described.AIM: The aim of this study was to compare the incidence, age at diagnosis and surgery for arthropathy and related hospitalizations between people with mild haemophilia and the general population in Sweden.METHODS: This was a register-based cohort study. Eligible participants were those with mild haemophilia born between 1941 and 2008 and a randomly selected, birthdate and sex-matched comparison group from the general population. Follow-up was from birth (or earliest 1984) until death, emigration or end of the study in 2008. Data on arthropathy were obtained from a national patient register. Negative binomial and competing risk regression and Kaplan-Meier estimate curves were used in the analysis.RESULTS: Overall, 315 people with haemophilia and 1529 people in the comparison group were included. Participants with haemophilia born between 1984 and 2008 had a ninefold (95% CI: 3.3-27.2) and 16-fold (95% CI: 6.7-36.5) increased incidence of arthropathy-related hospital admission and arthropathy diagnosis respectively. None in this cohort underwent surgery. Among participants with haemophilia born prior to 1984, the rates of arthropathy diagnosis and surgery of the index joints (knee, elbow, ankle) were increased twofold (95% CI: 1.0-3.2) and fivefold (95% CI: 1.7-17.8) respectively.CONCLUSION: Our data suggested a higher burden of arthropathy among individuals with mild haemophilia compared to the general population. Further research should investigate the need for targeted joint screening programmes among individuals with mild haemophilia.
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| 2. |
- Steen Carlsson, K, et al.
(författare)
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People with Haemophilia and Female Carriers in Sweden have a Higher Risk of Developing Anxiety, Depression and Pain Based on Treatment Patterns as Compared to Matched Controls: Data from a Registry Study over a Period of 11 Years
- 2019
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Ingår i: ISTH 2019 abstract OC 32.3.
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Konferensbidrag (refereegranskat)abstract
- Background: People with haemophilia (PwH) have increased risk of bleeds associated with acute and chronic pain, and long-term disability. Anxiety and depression are other determinants negatively affecting quality of life in PwH. Despite the severity of these co-morbidities, they have not been extensively investigated and associations between them even less. Aims: The MIND study (NCT03276130) aims to identify patterns of prescribed pain, anti-depressive and anti-anxiety medication and management of pain, depression and anxiety in PwH in four Nordic countries, based on patient registry data (A) and surveys (B). Here we describe current and retrospective treatment patterns of prescribed medication (part A) in PwH in Sweden, explore associations with the PwH background and complication characteristics, and compare prescribed medication use between PwH and the general population. Methods: This 11-year (2007-2017) retrospective population-based registry study, uses international classification systems for diagnoses, surgeries and medications. The study population includes all ages and was identified by diagnosis of haemophilia A or B, or at least one prescription of any factor VIII, IX, or bypassing agent. For each study subject, five age and gender-matched controls were included. Results: Data were extracted for 1550 PwH. The study population is shown in figure 1. The probability of being prescribed with analgesics, neuroleptics and anti-depressants in PwH compared to controls are shown in Table 1. Conclusions : A substantially higher prescription of analgesics in Swedish PwH as compared to controls suggests a need for increased focus on pain management including improved bleed protection and prevention of, e.g. arthropathy. The increased prescription of neurolep-tics and anti- depressants demonstrates that anxiety and depression are overrepresented in PwH and underscores the importance of identifying and managing the broad PwH population including non- frequent health care users. A similar prescription pattern was seen in female carriers suggesting a need for high medical attention and further research to address knowledge gaps.
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| 3. |
- Garmy, Pernilla, et al.
(författare)
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Evaluation of a school-based cognitive-behavioral depression prevention program
- 2019
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Ingår i: Scandinavian Journal of Public Health. - : SAGE Publications. - 1403-4948 .- 1651-1905. ; 14:2, s. 182-189
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Tidskriftsartikel (refereegranskat)abstract
- AIM: The aim of this study was to investigate the feasibility and cost-utility of a school-based cognitive-behavioral (CB) depression prevention program.METHODS: A quasi-experimental trial with an intervention group and a control group, with follow-up measurements obtained at three and 12 months after baseline, was conducted. The setting was six Swedish municipalities. The participants were students in grade 8 (median age: 14). A total of 462 students (79% girls) were allocated to the school-based CB prevention program, and 486 students (46% girls) were allocated to the control group. The school-based CB prevention program, Depression in Swedish Adolescents (DISA), was presented by school health service staff and teachers once per week for 10 weeks.RESULTS: The main outcome measures were self-reported depressive symptoms and self-rated health; the secondary outcome measures were adherence and cost-utility. The intervention group decreased their self-reported depressive symptoms (as measured by the Center for Epidemiological Studies Depression Scale) and improved their self-rated health (as measured by the visual analog scale) at the 12-month follow-up more than the control group ( p < .05).CONCLUSIONS: Given the challenges of conducting a study in a complex, everyday school setting with baseline differences between the intervention and control group, it is difficult to make accurate interpretations of the effectiveness of the intervention. However, with these limitations in mind, the results indicate that the DISA program is a feasible school-based prevention program.
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| 4. |
- Garmy, Pernilla, et al.
(författare)
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Evaluation of a school-based cognitive–behavioral depression prevention program
- 2019
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Ingår i: Scandinavian Journal of Public Health. - : SAGE Publications. - 1403-4948 .- 1651-1905. ; 47:2, s. 182-189
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Tidskriftsartikel (refereegranskat)abstract
- Aim: The aim of this study was to investigate the feasibility and cost-utility of a school-based cognitive–behavioral (CB) depression prevention program. Methods: A quasi-experimental trial with an intervention group and a control group, with follow-up measurements obtained at three and 12 months after baseline, was conducted. The setting was six Swedish municipalities. The participants were students in grade 8 (median age: 14). A total of 462 students (79% girls) were allocated to the school-based CB prevention program, and 486 students (46% girls) were allocated to the control group. The school-based CB prevention program, Depression in Swedish Adolescents (DISA), was presented by school health service staff and teachers once per week for 10 weeks. Results: The main outcome measures were self-reported depressive symptoms and self-rated health; the secondary outcome measures were adherence and cost-utility. The intervention group decreased their self-reported depressive symptoms (as measured by the Center for Epidemiological Studies Depression Scale) and improved their self-rated health (as measured by the visual analog scale) at the 12-month follow-up more than the control group (p <.05). Conclusions: Given the challenges of conducting a study in a complex, everyday school setting with baseline differences between the intervention and control group, it is difficult to make accurate interpretations of the effectiveness of the intervention. However, with these limitations in mind, the results indicate that the DISA program is a feasible school-based prevention program.
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| 5. |
- Holm, E., et al.
(författare)
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Bleeding-related hospitalization in patients with von Willebrand disease and the impact of prophylaxis : Results from national registers in Sweden compared with normal controls and participants in the von Willebrand Disease Prophylaxis Network
- 2018
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Ingår i: Haemophilia. - : Wiley. - 1351-8216. ; 24:4, s. 628-633
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Tidskriftsartikel (refereegranskat)abstract
- Introduction: Patients suffering from von Willebrand disease (VWD) have a variety of bleeding symptoms and require both outpatient care for treatment and, in more severe cases, hospitalization. Aim: To investigate the impact of having VWD on frequency of hospitalization compared to a control group and to evaluate whether regular replacement therapy (prophylaxis) is associated with reduction in the number of hospitalizations. Methods: Linkage of national population-based registries was used in the Congenital Bleeding Disorders study in Sweden (CBDS). Data were from the von Willebrand Disease Prophylaxis Network (VWD PN). Results: The national registries contained 2790 subjects with a diagnosis of VWD between 1987 and 2009. A total of 13 920 age- and gender-matched controls were identified. There were 2.0 times (range 1.5-2.5) as many inpatient hospitalizations among subjects with VWD compared to controls. The most common causes of hospitalization were gastrointestinal (GI) bleeding (n = 232 as primary diagnosis), menorrhagia (n = 198) and epistaxis (n = 192). Outpatient visits per year were also twice as common among those with VWD. From the VWD PN, 105 subjects were included (VWD type 3, 52.4%; type2A, 22.9%; type 1, 12.4% and other types, 3.9%). A total of 122 hospitalizations due to bleeding episodes, dominated by GI bleeds, were analysed. Significantly fewer hospitalizations occurred after initiation of prophylaxis (75 prior to and 45 after, P = .006). Conclusion: Our study indicates that subjects with VWD have a considerably higher consumption of healthcare resources compared to controls and that initiation of prophylaxis may reduce the number of hospitalizations due to bleeding.
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| 6. |
- Osooli, M., et al.
(författare)
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Surgery and survival in birth cohorts with severe haemophilia and differences in access to replacement therapy : The Malmö experience
- 2017
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Ingår i: Haemophilia. - : Wiley. - 1351-8216. ; 23:5, s. 403-408
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Tidskriftsartikel (refereegranskat)abstract
- Background: Persons with severe haemophilia require lifelong replacement therapy, prophylaxis, to prevent bleeding. Data describing long-term outcomes of prophylactic treatment are scarce. The aim of this study was to investigate joint surgery and survival among persons with severe haemophilia with special attention to access to prophylaxis in the early years of life. Methods: Eligible participants had severe haemophilia A or B and were treated at the Malmö centre from the 1960s onward. Time from birth until joint surgery was analysed for participants negative for factor inhibitor and alive in 2000. We compared survival among the entire cohort with severe haemophilia treated at the Malmö centre with the general male population of Sweden and a sample of persons with severe haemophilia from the United Kingdom (UK). Results: Overall, 167 participants were included, 106 (63.5%) of whom had complete data on joint surgery. Among those born before 1970, 1970-1979 and ≥1980 approximately 37%, 21% and 0% had their first joint surgery by age 30, respectively. There were no second joint surgeries reported in cohorts born ≥1970. Persons with severe haemophilia and negative for HIV treated in Malmö have attained approximately similar survival to that of the general male population in Sweden and live slightly longer than persons with severe haemophilia from the UK. Discussion and conclusion: Prophylaxis in Sweden, although costly, has markedly improved survival and joint outcomes for persons with severe haemophilia. This study highlights the importance of early start of replacement therapy to prevent or postpone serious joint damage.
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| 7. |
- Osooli, M, et al.
(författare)
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The association between health utility and joint status among people with severe haemophilia A : findings from the KAPPA register
- 2017
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Ingår i: Haemophilia. - : Wiley. - 1351-8216. ; 23:3, s. E180-E187
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Tidskriftsartikel (refereegranskat)abstract
- INTRODUCTION: People with severe haemophilia A have reportedly impaired health related quality of life (utility) mainly due to recurrent bleeding, arthropathy and treatment burden.AIM: To estimate utilities and evaluate their potential correlates - most importantly the joint status - among people with severe haemophilia A.METHODS: In this cross-sectional study, eligible participants had severe haemophilia A, were aged ≥15, negative for factor VIII inhibitor and included in the KAPPA register of Denmark, Norway and Sweden. Data on demographics, treatment history, haemophilia joint health score, and EQ-5D utility were obtained from the register. We used box plots to present utilities and joint status and ordinary least squares regression to evaluate correlates of utilities. Participants were consecutively enrolled in the KAPPA register between April 2013 and June 2016.RESULTS: Overall, 173 participants with median age of 34 (interquartile range: 25-45) were included. Twelve (6.9%) participants were on episodic treatment while 161 (93.1%) were treated using prophylaxis. Concomitant diseases and positive inhibitor history were reported for 73 (43.2%) and 21 (12.1%) participants, respectively. The highest median utility (1.0) was observed among those aged <29 on prophylaxis and those aged 30-44 who had started prophylaxis by age 3. In the multi-variable regression, joint scores of 16-25 (Coef. -0.18, 95% CI: -0.30, -0.06), 26-35 (Coef. -0.21, 95% CI: -0.36, -0.06) and >35 (Coef. -0.37, 95% CI: -0.52, -0.23) were associated with lower utilities.CONCLUSION: Moderate to severe joint manifestations are associated with reduced utilities among persons with severe haemophilia A.
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| 8. |
- Steen Carlsson, K., et al.
(författare)
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Preference-based valuation of treatment attributes in haemophilia A using web survey
- 2017
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Ingår i: Haemophilia. - : Wiley. - 1351-8216. ; 23:6, s. 894-903
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Tidskriftsartikel (refereegranskat)abstract
- Introduction: Clinical trials have shown promising results for extended half-life factor VIII concentrates but little is known about individuals' valuation of haemophilia treatment attributes. Aim: To assess patient/caregiver and population valuation of treatment attributes of prophylactic regimens for people with severe haemophilia A. Methods: Members ≥16 years of the Swedish Haemophilia Society (FBIS) and of a web-panel representative of the Swedish population were invited to participate in a web-survey investigating preferences for haemophilia treatment attributes using the Time Trade-Off methodology which ranks health states on a scale 0 (dead) to 1 (full health). All respondents assessed the same four treatment scenarios for severe haemophilia A, each described by three stylized attributes: injection interval (every 2nd or 5th day); participation in physical activity (Y/N); annual risk of bleed (1-2 or 5-6 bleeds). Results: The survey had 1657 respondents (68% complete responses; 184/1233 from FBIS/web-panel gave informed consent; mean age 52 years, 51% men). Respondents from FBIS and from the web-panel had the same preference ranking of the four treatment scenarios, but members of FBIS consistently rated significantly higher health utilities; range 0.67-0.73 vs 0.54-0.60. Participation in physical activity implied +0.023 (95% confidence interval 0.015-0.030); a longer injection interval implied +0.038 (0.03; 0.45); and fewer bleeds implied +0.022 (0.015-0.029) utility points. Conclusions: Patient/caregiver and population preferences indicate that treatment attributes such as frequency of injections and the possibility of participating in physical activity are important attributes impacting quality of life in addition to the control and prevention of bleeding episodes.
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