Real-life analysis on safety and efficacy of asciminib for ponatinib pretreated patients with chronic myeloid leukemia.

Failure of second-generation tyrosine kinase inhibitors (2GTKI) is a challenging situation in patients with chronic myeloid leukemia (CML). Asciminib, recently approved by the US Federal Drug Administration, has demonstrated in clinical trials a good efficacy and safety profile after failure of 2GTKI. However, no study has specifically addressed response rates to asciminib in ponatinib pretreated patients (PPT). Here, we present data on responses to asciminib from 52 patients in clinical practice, 20 of them (38%) with prior ponatinib exposure. We analyzed retrospectively responses and toxicities under asciminib and compared results between PPT and non-PPT patients.After a median follow-up of 30 months, 34 patients (65%) switched to asciminib due to intolerance and 18 (35%) due to resistance to prior TKIs. Forty-six patients (88%) had received at least 3 prior TKIs. Regarding responses, complete cytogenetic response was achieved or maintained in 74% and 53% for non-PPT and PPT patients, respectively. Deeper responses such as major molecular response and molecular response 4.5 were achieved in 65% and 19% in non-PPT versus 32% and 11% in PPT, respectively. Two patients (4%) harbored the T315I mutation, both PPT.In terms of toxicities, non-PPT displayed 22% grade 3-4 TEAE versus 20% in PPT. Four patients (20% of PPT) suffered from cross-intolerance with asciminib as they did under ponatinib.Our data supports asciminib as a promising alternative in resistant and intolerant non-PPT patients, as well as in intolerant PPT patients; the resistant PPT subset remains as a challenging group in need of further therapeutic options.

Identifiability of structural networks of nonlinear electronic oscillators.

The interplay between structure and function is critical in the understanding of complex systems, their dynamics and their behavior. We investigated the interplay between structural and functional networks by means of the differential identifiability framework, which here quantifies the ability of identifying a particular network structure based on (1) the observation of its functional network and (2) the comparison with a prior observation under different initial conditions. We carried out an experiment consisting of the construction of [Formula: see text] different structural networks composed of [Formula: see text] nonlinear electronic circuits and studied the regions where network structures are identifiable. Specifically, we analyzed how differential identifiability is related to the coupling strength between dynamical units (modifying the level of synchronization) and what are the consequences of increasing the amount of noise existing in the functional networks. We observed that differential identifiability reaches its highest value for low to intermediate coupling strengths. Furthermore, it is possible to increase the identifiability parameter by including a principal component analysis in the comparison of functional networks, being especially beneficial for scenarios where noise reaches intermediate levels. Finally, we showed that the regime of the parameter space where differential identifiability is the highest is highly overlapped with the region where structural and functional networks correlate the most.

Population norms for the EQ-5D-3L: a cross-country analysis of population surveys for 20 countries.

This study provides EQ-5D population norms for 20 countries (N = 163,838), which can be used to compare profiles for patients with specific conditions with data for the average person in the general population in a similar age and/or gender group. Descriptive EQ-5D data are provided for the total population, by gender and by seven age groups. Provided index values are based on European VAS for all countries, based on TTO for 11 countries and based on VAS for 10 countries. Important differences exist in EQ-5D reported health status across countries after standardizing for population structure. Self-reported health according to all five dimensions and EQ VAS generally decreased with increasing age and was lower for females. Mean self-rated EQ VAS scores varied from 70.4 to 83.3 in the total population by country. The prior living standards (GDP per capita) in the countries studied are correlated most with the EQ VAS scores (0.58), while unemployment appeared to be significantly correlated in people over the age of 45 only. A country's expenditure on health care correlated moderately with higher ratings on the EQ VAS (0.55). EQ-5D norms can be used as reference data to assess the burden of disease of patients with specific conditions. Such information, in turn, can inform policy-making and assist in setting priorities in health care.

Using a stated preference discrete choice experiment to assess societal value from the perspective of decision-makers in Europe. Does it work for rare diseases?

OBJECTIVES: To pilot the feasibility of using a discrete choice experiment (DCE) design to investigate individual preferences from the decision-maker perspective regarding the use of public funding for orphan drugs and generate prior information for future experimental designs. METHODS: A DCE was used on a convenience sample of participants from five European countries (England, France, Germany, Italy and Spain), exploring their preferences in distinct healthcare scenarios involving orphan drugs. A preliminary review of the empirical literature on distributive preferences informed the selection of attributes and their levels in the design. An online questionnaire was used to conduct the DCE survey. RESULTS: A total of 199 questionnaires were completed. The five country model showed relative preference for some attributes over others: cost of treatment, improvement in health, value for money and availability of treatment alternatives received the greatest attention. However, disease severity, beginning of life, waiting times and side effects were also shown to be important social values that should not be ignored. CONCLUSIONS: The findings presented in this study provide insight about the preferences that can influence decisions on orphan drugs in different countries. This study also provides valuable prior information that could inform future DCE designs in this area.

[Empathy, social cognition and subjective quality of life in schizophrenia]. / Empatía, cognición social y calidad de vida subjetiva en esquizofrenia.

BACKGROUND: People diagnosed with schizophrenia present empathy deficits that have been related to their poor psychosocial functioning. The objectives were: 1) analyse the relation between empathy, social cognition and quality of life in subjects diagnosed with schizophrenia and other psychotic disorders; 2) eva¬luate these variables according to the severity of the features. METHODS: Forty-one patients, divided into two groups according to the level of severity, were included. A battery of tests was applied: Interpersonal Reactivi¬ty Index (IRI), GEOPTE scale of social cognition for psychosis, World Health Organization Quality of Life Assessment: Brief Version (WHOQOL-BREF), Clini¬cal Global Impression scale (CGI), Scale for the As¬sessment of Positive Symptoms (SAPS) and Negative Symptoms (SANS). RESULTS: There was a direct relationship between per¬sonal anxiety and fantasy sub-scales of the IRI and the GEOPTE scale, and an inverse relationship with seve¬ral dimensions of quality of life of the WHOQOL-BREF. The GEOPTE scale had an inverse relation with all the dimensions of quality of life evaluated. The mildly sick group obtained scores that were significantly lower in fantasy (15.44 vs. 20.12; p=0.001) and significantly hig¬her in psychological health (58.63 vs. 45.40; p=0.017) and environment (67.00 vs. 53.68; p=0.006). CONCLUSIONS: A relationship is found between empathy, social condition and perceived quality of life in people diagnosed with schizophrenia on programs of psycho-social rehabilitation. Similarly, the existence of relevant differences in these variables according to the level of severity of the clinical features is underscored.

HLA-B*57 and IFNL4-related polymorphisms are associated with protection against HIV-1 disease progression in controllers.

Background: HIV-1-controllers maintain HIV-1 viremia at low levels (normally <2000 HIV-RNA copies/mL) without antiretroviral treatment. However, some HIV-1-controllers have evidence of immunologic progression with marked CD4+T-cell decline. We investigated host genetic factors associated with protection against CD4+T-cell loss in HIV-1-controllers. Methods: We analysed the association of interferon lambda 4 (IFNL4)-related polymorphisms and HLA-B haplotypes within Long Term Non-Progressor HIV-1-controllers ((LTNP-C), defined by maintaining CD4+T-cells counts >500 cells/mm3 for more than 7 years after HIV-1 diagnosis) versus non-LTNP-C, who developed CD4+T-cells counts <500 cells/mm3 Both a Spanish study cohort (n=140) and an international validation cohort (n=914) were examined. Additionally, in a subgroup of individuals HIV-1-specific T-cell responses and soluble cytokines were analysed RESULTS: HLA-B*57 was independently associated with the LTNP-C phenotype (OR=3.056 (1.029-9.069) p=0.044 and OR=1.924 (1.252-2.957) p=0.003) while IFNL4 genotypes represented independent factors for becoming non-LTNP-C (TT/TT, ss469415590, OR=0.401 (0.171-0.942) p=0.036 or A/A, rs12980275, OR=0.637 (0.434-0.934) p=0.021) in the Spanish and validation cohort, respectively, after adjusting for sex, age at HIV-1 diagnosis, IFNL4-related polymorphisms and different HLA-B haplotypes. LTNP-C showed lower plasma IP-10 (p=0.019) and higher IFN-γ (p=0.02) levels than the HIV-1-controllers with diminished CD4+T-cell numbers. Moreover, LTNP-C exhibited higher quantities of IL2+CD57- and IFN-γ+CD57- HIV-1-specific CD8+T-cells (p=0.002 and 0.041, respectively) than non-LTNP-C. Conclusions: We have defined genetic markers able to segregate stable HIV-1-controllers from those who experience CD4+T-cell decline. These findings allow for identification of HIV-1-controllers at risk for immunologic progression, and provide avenues for personalized therapeutic interventions and precision medicine for optimizing clinical care of these individuals.

Hemorragia digestiva alta secundaria a un proceso linfoproliferativo infrecuente / Upper gastrointestinal bleeding due to an uncommon lymphoproliferative process

No disponible

[Characteristics of suicides in Navarra by gender (2010-2013)]. / Características de los suicidios consumados en Navarra en función del sexo (2010-2013).

OBJECTIVE: To determine the number of suicides and the main social and demographic characteristics, time frames and methods involved during the period 2010-2013 in Navarra by gender. METHODS: A study of the Electronic Clinical Records provided by Navarra's Healthcare Service in which suicides in Navarra are detailed. RESULTS: One hundred and eighty individuals committed suicide. The number of suicides remained stable: 41 in 2010, 51 in 2011 and 44 in 2012 and 2013. Seventy-five point four percent were males (n=136) and 24.6 % (n=44) were females. In the 13 to 26 age group, 12 (92.3%) out of 13 suicides were committed by males. In terms of employment status, 49.3% (n=70) were pensioners. The highest rate of suicides was reached in summer (n=71) and spring (n=39). Monday was the day with the highest rate of suicides (n=37) and the time period between 8:00 and 12:00 hours was when the highest number of suicides (n=80) took place. The most usual ways of committing suicide were hanging (n=80), falling from a height (n=41) and pharmacological overdose (n=23). Males used violent methods more frequently. It is necessary to highlight the fact that in some of the sociodemographic characteristics there was up to 60% of cases without enough information. CONCLUSION: The results obtained show some specific features of the phenomenon of suicide in Navarra that should be considered for its prevention. Furthermore, the implementation of effective protocols of data collection is recommended to develop prevention strategies.

SEABED: Small molEcule activity scanner weB servicE baseD.

MOTIVATION: The SEABED web server integrates a variety of docking and QSAR techniques in a user-friendly environment. SEABED goes beyond the basic docking and QSAR web tools and implements extended functionalities like receptor preparation, library editing, flexible ensemble docking, hybrid docking/QSAR experiments or virtual screening on protein mutants. SEABED is not a monolithic workflow tool but Software as a Service platform. AVAILABILITY AND IMPLEMENTATION: SEABED is a free web server available at http://www.bsc.es/SEABED.

Inflammatory status is different in relationship to insulin resistance in severely obese people and changes after bariatric surgery or diet-induced weight loss.

AIM: To assess if insulin resistance is related to a different inflammatory status (especially lymphocyte subpopulations) in severely obese people and to evaluate changes after weight loss either following a very-low calorie diet (VLCD) or bariatric surgery. RESEARCH METHODS & PROCEDURES: Severely obese patients were consecutively recruited in our Obesity Unit. Blood lymphocyte subpopulations and inflammatory parameters were measured baseline, after a VLCD during 6 weeks and one year after biliopancreatic diversion. Insulin resistance was evaluated by Homeostasis Model Assessment (HOMA) index. RESULTS: After excluding diabetic patients, 58 patients were studied. HOMA index classified 63.8% of them as insulin resistant (IR). Serum baseline levels of inflammatory cytokines were not significantly different between IR and insulinsensitive (IS) patients but, regarding lymphocyte subpopulations, Natural Killer (NK) cells were higher in IR patients [(305.0 (136.7) vs. 235.0 (80.7) cells/µL, p=0.047]. NK cells showed a significant positive correlation with HOMA index (r=0.484, p=0.000) and with the carbohydrate content of the diet (r=0.420, p=0.001). After VLCD, NK cells significantly decreased, but only in IR patients and in those losing more than 10% of their initial weight. After biliopancreatic diversion, total and CD8 T Lymphocytes, B lymphocytes and NK cells also decreased but only in IR individuals. CONCLUSION: NK cells are significantly increased in IR severely obese people in respect to IS, suggesting a slightly different immune status in these patients with a probable dietary relationship. Weight loss could reverse this increase either after VLCD or after bariatric surgery.

[Effects of preoperative weight loss with a very low calorie diet (VLCD) on weight loss after biliopancreatic diversion in patients with severe obesity]. / Efectos de la pérdida de peso mediante una dieta muy baja en calorías (VLCD) sobre la pérdida de peso tras derivación biliopancreática en pacientes con obesidad severa.

BACKGROUND: Weight loss before bariatric surgery, achieved by means of a very low calorie diet (VLCD) has been recently reported to be related to a lower rate of postoperative complications. However, it is controversial if preoperative weight loss after VLCD could improve postoperative weight loss. AIMS: To assess the effectiveness of a preoperative VLCD for 6 weeks in weight loss one year after bariatric surgery. To evaluate the changes obtained in anthropometric measures and biochemical parameters after VLCD. METHODS: Prospective uncontrolled study including severely obese patients undergoing biliopancreatic diversion in our Obesity Unit in 2008-2010. Patients included followed a VLCD providing 840 kcal and 60 g of protein (Optisource®). Descriptive data are presented as mean (standard deviation) and after checking a normal distribution is followed, they were analyzed by Student s T test, ANOVA or Pearson correlation. RESULTS: We evaluated 107 obese patients, 43.5 (10.2) years-old, 72% women, with initial weight 122.4 (18.6) Kg and BMI 46.8 (5.5) kg/m(2). 24.5% of them lost more than 10 % of initial weight and 73.5% more than 5% after following VLCD. Mean percentage of excess weight loss (% PSP) one year after surgery was 59.6 (13.4)%, and although it was higher for those patients losing more weight after VLCD, a significant correlation was not found: those who lost more than 5% showed %PSP 59.5 (13.8) % after twelve months and 68.4 (16.2) % of percentage of excess BMI loss (%PEIMC), vs 57,9 (13,1) % and 68.5 (16.6) % if they didn t lose that amount of weight. Those patients losing more than 10% achieved %PSP 63.3 (13.7) and %PEIMC 70.9 (14.7) vs 58.2 (14.0) y 67.7 (16.7) vs those not losing that amount. Significant correlations between preoperative loss with VLCD and %PSP or %PEIMC at 3,6,9 and 12 months were not found, and only %PSP 1 month after surgery correlated with %PSP after VLCD (r = 0.454, p = 0.003). CONCLUSIONS: Preoperative weight loss with VLCD in severely obese patients did not show to improve either %PSP or %PEIMC one year after bariatric surgery.

Introducción: Se ha comunicado recientemente que la reducción de peso previa a cirugía bariátrica mediante dieta muy baja en calorías (VLCD) durante 2 semanas supone menor tasa de complicaciones postoperatorias. Es debatido, sin embargo, si la pérdida de peso preoperatoria con VLCD puede favorecer pérdida de peso postoperatoria. Objetivos: Valorar la eficacia de una VLCD, seguida durante 6 semanas preoperatorias, en el descenso de peso conseguido al 2013 de la cirugía bariátrica. Evaluar los cambios en parámetros antropométricos y bioquímicos conseguidos con dicha dieta. Metodología: Estudio prospectivo no controlado en los pacientes obesos sometidos a derivación biliopancréatica en la Unidad de Obesidad de referencia en el periodo 2008-2010. Los pacientes recibieron durante 6 semanas previas a la intervención una VLCD que aportaba diariamente 840 kcal y 60 g de proteínas (Optisource®). Los datos descriptivos se presentan como media y desviación estándar (DS), y tras comprobar su distribución normal, fueron analizados mediante prueba t de Student, ANOVA o correlación de Pearson. Resultados: Fueron valorados 107 pacientes obesos, de 43,5 (10,2) 2013s, el 72 % fueron mujeres con peso inicial 122,4 (18,6) Kg e IMC de 46,8 (5,5) kg/m2. Un 24,5% perdieron más de 10 % de su peso inicial y un 73,5% más de 5% tras VLCD. La media de porcentaje pérdida de exceso de peso (% PSP) a los 12 meses de la intervención fue 59,6 (13,4)%, y aunque fue mayor en los pacientes que habían perdido peso con VLCD, no se asoció de forma significativa: aquellos pacientes con pérdida mayor de 5% perdieron a los 12 meses 59,5 (13,8)% de PSP y 68,4 (16,2) % de exceso de IMC (%PEIMC), frente a 57,9 (13,1) % y 68,5 (16,6) % si no conseguían esa pérdida. El grupo de pacientes con pérdida mayor de 10 % consiguió %PSP de 63,3 (13,7) y %PEIMC de 70,9 (14,7) vs 58,2 (14,0) y 67,7 (16,7) si no perdieron >10% del peso inicial. No se encontró correlación entre la pérdida preoperatoria con VLCD y %PSP ni de exceso de IMC (%PEIMC) a 3,6,9 y 12 meses, sólo el %PSP a 1 mes se correlacionó con %PSP con VLCD (r = 0,454, p = 0,003). Conclusiones: La pérdida de peso preoperatoria mediante VLCD en pacientes obesos mórbidos no hademostrado favorecer la pérdida de exceso de peso ni de exceso de IMC al 2013 de la cirugía bariátrica.

Evaluación de los resultados de un programa de Dispensación Responsable de Bebidas Alcohólicas / Evaluation of results of a program of Responsible Alcoholic Beverage Dispensing

Los programas de prevención selectiva en Dispensación Responsable de Bebidas Alcohólicas (DRA) presentan diferentes evidencias de su eficacia en otros países. Sin embargo en España sólo se dispone de datos de la implementación de DRA en Barcelona. Este artículo pretende dos objetivos: valorar la efectividad de una intervención en DRA realizada en Pamplona con camareros, y evaluar los resultados tanto individual como grupalmente para identificar áreas de mejora. La muestra se compone de 40 profesionales de hostelería que participaron en alguno de los 4 cursos de DRA. Se aplicaron cuestionarios para medir pre-post conocimientos, actitudes, autoeficacia percibida y expectativas de la formación. Se presentan análisis descriptivos de todas las variables y resultados globales e individuales de la evolución de cada participante. El programa DRA llevado a cabo ofrece datos globales de mejora significativa en conocimientos, actitudes y expectativas. Los resultados encontrados evidencian la necesidad de considerar el análisis de la evolución individual de los sujetos en cada ítem (AU)

Selective prevention programs in the Responsible Dispensing of Beverages (DRA, Dispensación Responsable de Bebidas Alcohólicas) have provided varying evidence of their effectiveness in other countries. In Spain, however, data is only available for the implementation of DRA in Barcelona. This article has two aims: to assess the effectiveness of an intervention in DRA with waiters in Pamplona, and to evaluate individual and group results in order to identify areas for improvement. The sample consisted of 40 hostelry professionals who participated in one of the 4 courses of DRA. Questionnaires were used to measure pre-/post-knowledge, attitudes, perceived self-efficacy and expectations about the training. We present descriptive analyses of all the variables and individual and overall results of the evolution of each participant. The DRA program provides overall data of significant improvements in knowledge, attitudes and expectations. The results show the need to consider the analysis of the evolution of individual subjects in each item (AU)

Similar gene expression profiles in smokers and patients with moderate COPD.

Chronic obstructive pulmonary disease (COPD) is characterized by multiple cellular and structural changes affecting the airways, lung parenchyma and vasculature, some of which are also identified in smokers without COPD. The molecular mechanisms underlying these changes remain poorly understood. With the aim of identifying mediators potentially implicated in the pathogenic processes that occur in COPD and their potential relationship with cigarette smoking, we evaluated the mRNA expression of genes involved in inflammation, tissue remodeling and vessel maintenance. Lung tissue samples were obtained from 60 patients who underwent lung resection (nonsmokers, n=12; smokers, n=12; and moderate COPD, n=21) or lung transplant (severe-to-very severe COPD, n=15). PCR arrays containing 42 genes coding for growth factors/receptors, cytokines, metalloproteinases, adhesion molecules, and vessel maintenance mediators were used. Smoking-induced changes include the up-regulation of inflammatory genes (IL-1ß, IL-6, IL-8, CCL2, and CCL8) and the decreased expression of growth factor/receptor genes (BMPR2, CTGF, FGF1, KDR and TEK) and genes coding for vessel maintenance factors (EDNRB). All these genes exhibited a similar profile in moderate COPD patients. The up-regulation of MMP1 and MMP9 was the main change associated with COPD. Inflammatory genes as well as the endothelial selectin gene (SELE) were down-regulated in patients with more severe COPD. Clustering analysis revealed a closer relationship between moderate COPD and smokers than between both subsets of COPD patients for this selected set of genes. The study reveals striking similarities between smokers and COPD patients with moderate disease emphasizing the crucial role of cigarette smoking in the genesis of these changes, and provides additional evidence of the involvement of the matrix metalloproteinase's in the remodeling process of the lung in COPD.

[Evaluation of results of a program of Responsible Alcoholic Beverage Dispensing]. / Evaluación de los resultados de un programa de Dispensación Responsable de Bebidas Alcohólicas.

Selective prevention programs in the Responsible Dispensing of Beverages (DRA - Dispensación Responsable de Bebidas Alcohólicas) have provided varying evidence of their effectiveness in other countries. In Spain, however, data is only available for the implementation of DRA in Barcelona. This article has two aims: to assess the effectiveness of an intervention in DRA with waiters in Pamplona, and to evaluate individual and group results in order to identify areas for improvement. The sample consisted of 40 hostelry professionals who participated in one of the 4 courses of DRA. Questionnaires were used to measure pre-/post-knowledge, attitudes, perceived self-efficacy and expectations about the training. We present descriptive analyses of all the variables and individual and overall results of the evolution of each participant. The DRA program provides overall data of significant improvements in knowledge, attitudes and expectations. The results show the need to consider the analysis of the evolution of individual subjects in each item.

Usefulness of an index score as a predictor of hepatic fibrosis in obese patients undergoing bariatric surgery.

OBJECTIVE: To evaluate the usefulness of a non-invasive clinical score to predict liver fibrosis in the steatosis associated with morbid obesity. PATIENTS AND METHODS: We included 88 patients, who underwent bariatric surgery in the Sanitary Area of León, Spain, and who showed a liver biopsy with steatosis greater than 5%. This is a retrospective study in which the rate of fibrosis is calculated from tests performed during the preoperative period, and is then compared to data from intraoperative hepatic biopsies. The analysis population was grouped according to the presence of advanced fibrosis in the liver biopsy (grade 3-4) or its absence (grade 0-2). The cutoff used for diagnosing advanced fibrosis was 0.676 (high cutoff point), and the cutoff point to exclude advanced fibrosis was -1.455 (low cutoff). RESULTS: The prevalence of advanced fibrosis in the histological samples was 5.5%, and 65.9% of patients had no fibrosis. The cutoff for a low negative predictive value was 100%, and sensitivity was 100%. The cutoff point for a high positive predictive value was 1.7%, and specificity was 31.3%. CONCLUSIONS: This scoring system for morbidly obese patients eligible for bariatric surgery allows to identify those without advanced fibrosis, but cannot predict who may have advanced fibrosis.

[Diagnostic concordance between paediatric and mental health]. / Concordancia en el diagnóstico entre pediatría y salud mental.

BACKGROUND: To analyse the diagnostic concordance between the paediatric and mental health (MH) services. MATERIALS AND METHODS: Two hundred and seven patients from 0 to 16 years referred from paediatrics to the Estella Mental Health Centre during 2006 and 2007. Concordance between global Kappa Index and specific diagnosis was calculated with Epidat 3.1. An analysis was made for each diagnostic category of the percentage of cases where the diagnosis made in paediatrics was confirmed in Mental Health. RESULTS: The global diagnostic concordance between both medical care levels has a Kappa Index of 0.58. There is a wide variability in the concordance between the different diagnoses. The concordance is weak (0.2-0.4) for specific developmental disorder, affective disorders and adaptative disorders. A moderate concordance (0.41-0.6) is obtained for mental retardation, pervasive developmental disorder, z diagnostics, and sibling rivalry disorder. Concordance is good for attention deficit disorder with hyperactivity, anxiety disorder and conduct disorder. Finally, the diagnostic concordance is very good for enuresis and encopresis and for eating disorders. CONCLUSIONS: The diagnostic concordance obtained between paediatric services and the mental health centre is moderate. A wide variability is obtained in the concordance between different diagnoses.

Patient involvement in health research: a contribution to a systematic review on the effectiveness of treatments for degenerative ataxias.

This study aims to incorporate patients' perspective in the design of a systematic review of scientific literature on the effectiveness of degenerative ataxias (DA) treatments. 53 patients with DA from different regions of Spain were consulted using the Delphi method, with three rounds via e-mail. In the first round, obtained information was on treatments used and relevant self-perceived health problems related to DA. The following two rounds were used to prioritize and achieve a consensus on the answers. The participation rate was 100% for all rounds. The most relevant self-perceived health problems were limitations in activities of daily living (ADL), visual and auditory problems and diminished self-esteem. The bibliographic search for the systematic review was enriched by these patient contributions. No study offered information on treatment effectiveness for the following problems prioritized by patients: ADL, social relationships, disease acceptance and quality of life. Thus some of the self-perceived DA-related health problems identified by the patients have never been investigated and should be considered to improve future research projects which should be adapted to meet patients' needs. Effective participation of patients can extend the value of systematic reviews to ensure they respond to both clinicians' information needs and patients' expectations.