This international collaboration allowed us to determine that PROs in ConHD vary as a function of patient-related factors as well as the countries in which patients live.

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BackgroundTo optimize healthcare use of adults with congenital heart disease, all important predictors of healthcare utilization should be identified. Clinical and psychological characteristics (eg, age and depression) have been found to be associated with healthcare use. However, the concept of illness identity, which assesses the degree to which congenital heart disease is integrated into one's identity, has not yet been investigated in association with healthcare use. Hence, the purpose of the study is to examine the predictive value of illness identity for healthcare use.Methods and ResultsIn this ambispective analytical observational cohort study, 216 adults with congenital heart disease were included. The self‐reported Illness Identity Questionnaire was used to assess illness identity states: engulfment, rejection, acceptance, and enrichment. After 1 year, self‐reported healthcare use for congenital heart disease or other reasons over the past 6 months was assessed including hospitalizations; visits to general practitioner; visits to medical specialists; and emergency room visits. Binary logistic and negative binomial regression analyses were conducted, adjusting for age, sex, disease complexity, and depressive and anxious symptoms. The more profoundly the heart defect dominated one's identity (ie, engulfment), the more likely this person was to be hospitalized (odds ratio=3.76; 95% confidence interval=1.43–9.86), to visit a medical specialist (odds ratio=2.32; 95% confidence interval=1.35–4.00) or a general practitioner (odds ratio=1.78; 95% confidence interval=1.01–3.17), because of their heart defect.ConclusionsIllness identity, more specifically engulfment, has a unique predictive value for the occurrence of healthcare encounters. This association deserves further investigation, in which the directionality of effects and the contribution of illness identity in terms of preventing inappropriate healthcare use should be determined.

BackgroundPatient activation is associated with better outcomes and lower costs. Although the concept is widely investigated, little attention was given to patient activation and its predictors in patients undergoing hemodialysis. Hence, we aimed to investigate the level of patient activation and aimed to determine patient- and treatment-related predictors of activation in patients undergoing hemodialysis.MethodsThis cross-sectional observational study recruited patients undergoing hemodialysis in three Flemish hospitals. Participants were questioned about patient characteristics (i.e., age, sex, education, employment, children, social support, leisure-time, living condition, and care at home), treatment- and health-related characteristics (i.e., hospital, time since first dialysis, transplantation, self-reported health (EQ-VAS) and depressive symptoms (PHQ-2)), and patient activation (PAM-13). Univariate and multiple linear regression analyses with dummy variables were conducted to investigate the associations between the independent variables and patient activation.ResultsThe average patient activation-score was 51. Of 192 patients, 44% patients did not believe they had an important role regarding their health. Multiple linear regression showed that older patients, who reported being in bad health, treated in a particular hospital, without leisure-time activities, and living in a residential care home, had lower patient activation. These variables explained 31% of the variance in patient activation. Based on literature, we found that activation of patients on hemodialysis is low, compared to that of other chronic patient groups.ConclusionIt could be useful to implement patient activation monitoring, since the level of activation is low in patients undergoing hemodialysis. Older patients, who reported being in bad health, treated in a particular hospital, without leisure-time activities, living in a residential care home, are at higher risk for lower activation.Electronic supplementary materialThe online version of this article (10.1186/s12882-018-0917-2) contains supplementary material, which is available to authorized users.