Lucia Prihodova

Haemophilia care in Europe - a survey of 35 countries.

A questionnaire was circulated in 2012 to national haemophilia patient organizations in Europe affiliated to the European Haemophilia Consortium (EHC) and the World Federation of Hemophilia (WFH) to seek information about the organization of haemophilia care and treatment available at a national level. The 35 responses received highlighted major differences in the availability of treatment and care. There was a wide range in factor VIII consumption with usage ranging from 0.20 IU per capita in Armenia to 8.56 IU per capita in Sweden (median: IU per capita). The decrease in health budgets in many countries was not matched by decreases in use of FVIII per capita. In the 19 countries that responded to the previous survey, there was a significant improvement in access to prophylaxis and home treatment.

A survey of the outcome of prophylaxis, on-demand treatment or combined treatment in 18-35-year old men with severe haemophilia in six countries

A number of studies have been published on the benefits of prophylactic treatment in adults with haemophilia. However, in many countries, it is considered as optional due to financial constraints. This survey was carried out to examine the long‐term effects of prophylaxis and the continuing benefit of the treatment into adulthood. Self‐assessed health‐related data and the EQ‐5D questionnaire measuring health utility were collected from 124 men (26.9 ± 4.6 years) from Canada (N = 40), France (N = 14), Ireland (N = 17), the Netherlands (N = 16), Poland (N = 24) and the UK (N = 13). The respondents were split into four groups: On‐Demand, <50% life on prophylaxis, ≥50% life on prophylaxis, Prophylaxis. Overall, long‐term prophylaxis results in lower presence of target joints (P ≤ 0.001), occurrence of serious bleeding episodes (P ≤ 0.05), recurring bleeding episodes (P ≤ 0.01) and requirement for surgical procedures (P ≤ 0.05). Furthermore, health utility (P ≤ 0.01) in the On‐demand group was significantly lower (P ≤ 0.01) compared to the ≥50% life on prophylaxis and the Prophylaxis group. No significant differences between countries were found except between the Netherlands and Poland, with Poland showing the lowest health utility (P ≤ 0.01) and the most problems with mobility (P ≤ 0.05) and pain/discomfort (P ≤ 0.001). The Netherlands showed the highest health utility (0.915) followed by Canada (0.791), Ireland (0.786), UK (0.768), France (0.687) and Poland (0.629). The results demonstrate consistently higher quality of life of individuals who are on long‐term prophylactic treatment when compared to on‐demand treatment or intermittent prophylaxis and on ‐demand treatment.

Impact of personality and psychological distress on health‐related quality of life in kidney transplant recipients

Health‐related quality of life (HRQoL) has become an important outcome in the evaluation of kidney transplantation (KT). Although the medical and sociodemographic predictors of HRQoL in patients after KT are well known, there is still a lack of knowledge about the psychological factors involved. This study focuses on the role of personality and actual psychological distress in predicting HRQoL after KT. Sociodemographic (gender, age, education, average income), medical (glomerular filtration, serum albumin, number of co‐morbid diseases) and psychological data (neuroticism, extroversion, psychological distress) were collected from 177 (60.5% male subjects; 48 ± 12.1 years) kidney transplant recipients, and physical and mental HRQoL were measured using the SF‐36. A univariate general linear model analysis was performed. Higher physical HRQoL was associated with younger age, higher education and income, a low number of co‐morbid diseases, lower neuroticism and distress. Higher mental HRQoL was associated with higher education and income, longer time from KT, higher extroversion, lower neuroticism and distress. In both physical and mental HRQoL, actual distress was the best predictor, even when controlled for neuroticism. These results confirm the importance of psychological distress in patients and its impact on their HRQoL after KT and can be applied in intervention programs focused on increasing HRQoL.

Differences in perceived health status between kidney transplant recipients and dialyzed patients are based mainly on the selection process

Rosenberger J, van Dijk JP, Prihodova L, Majernikova M, Nagyova I, Madarasova Geckova A, Roland R, van den Heuvel WJA, Groothoff JW. Differences in perceived health status between kidney transplant recipients and dialyzed patients are based mainly on the selection process.
Clin Transplant 2010: 24: 358–365.

Social Participation After Kidney Transplantation as a Predictor of Graft Loss and Mortality Over 10 Years A Longitudinal Study

Background Social participation is considered to be an objective parameter for evaluating the success of transplantation. This study explores the association between posttransplant factors (kidney function, perceived side effects of immunosuppressive treatment, comorbidity, physical and mental health-related quality of life [HRQoL]) and social participation in patients 3 months to 6 years after kidney transplantation (baseline) and their impact on graft loss and mortality for up to 10 years (follow-up). Methods At baseline, 331 patients provided their socioeconomic and medical data (comorbidity, kidney function) and completed the end-stage renal disease symptom checklist (perceived side effects), the Short Form Health Survey-36 and the Participation Scale. At follow-up, information on all-cause graft-loss and mortality was noted. Binary logistical regression exploring the effects of the independent variables on social participation and Cox regression analyses determining whether social participation predicted graft loss and mortality were performed. Results Restrictions in social participation were associated with living alone, poorer kidney function, lower perceived side effects of corticosteroids, higher perceived cardiac and renal dysfunction, higher perceived posttransplantation distress, lower physical HRQoL, and fewer working hours. Restrictions in social participation increased the risk of all-cause graft loss 2.29-fold and the risk of all-cause mortality 11.94-fold during follow-up. Education, kidney function, and comorbidity also increased the risk for poor patient outcome. Conclusion Kidney function, perceived side effects, comorbidities, and HRQoL affect social participation in patients after kidney transplantation. Additionally, social participation has a positive effect on long-term patient outcomes, decreasing the odds of graft loss and mortality over 10 years.

Anemia has a negative impact on self-rated health in kidney transplant recipients with well-functioning grafts: findings from an 8-year follow-up study

PurposeAnemia is a predictor of mortality and of self-rated health (SRH). However, studies on the relationship between SRH and changes in hemoglobin (Hb) value over time stratified by chronic kidney disease (CKD) stages are lacking. The aim is to explore whether a change in Hb-value over time associates with SRH at up to 8-year follow-up, stratified for CKD stages.MethodsA prospective study with a baseline measurement between the 3rd and 12th month after KT was performed on 337 consecutive patients. Demographic and clinical data were retrieved from medical records. CKD stages were estimated using the CKD-EPI formula and divided into two groups: CKD1–2 and CKD3–5. Generalized estimating equations (GEE) were performed to identify associations of SRH at follow-up in both CKD groups.ResultsMale gender, new-onset diabetes mellitus after KT (NODAT), a decrease in estimated glomerular filtration rate (eGFR) and Hb-value over time contributed significantly to the GEE model on SRH at follow-up in CKD1–2. For SRH at follow-up in CKD3–5, older age, male gender and chronic renal allograft dysfunction (CRAD) contributed significantly to the GEE model.ConclusionsAt up to 8-year follow-up, male gender, NODAT, a decrease in eGFR and Hb-value over time are associated with poorer SRH in CKD1–2. In such patients, we suggest monitoring slight deteriorations in eGFR and Hb-values. In CKD3–5, higher age, male gender and higher presence of CRAD are associated with poorer SRH at up to 8-year follow-up. In these patients, adequate treatment would slow down CRAD progression.

Factors Associated with Self-Rated Health after Kidney Transplantation: A Prospective Study

Background: This prospective study explores and compares the relationship between patients’ self-rated health (SRH) after kidney transplantation (KT) at different follow-up periods and its medical and nonmedical predictors over time. Methods: Patients (n = 128) who completed a questionnaire (the SRH question of the SF-36 and the End-Stage Renal Disease Symptom Checklist – Transplantation Module) were enrolled. Clinical data were retrieved from medical files. The sample was stratified into early (n = 89) and late (n = 39) cohorts according to time since KT at baseline. Linear regression was used to identify predictors of SRH at follow-up. Results: In both cohorts, a change in glomerular filtration rate (GFR) over time remained a predictor of SRH; in the early cohort, age was an additional predictor; in the late cohort, a change in transplantation-associated psychological distress over time and the number of late acute rejection episodes during the observation period were additional predictors. Conclusions: Improvement in GFR over time predicted better SRH at each period after KT. Decreased transplantation-associated psychological distress and fewer late acute rejection episodes seemed to predict better SRH at a later follow-up period. Despite these observations, higher SRH was associated with better clinical outcomes.