Parenting a child with phenylketonuria or galactosemia: implications for health-related quality of life

Parents of children with chronic disorders have an impaired health-related quality of life (HRQoL) compared to parents of healthy children. Remarkably, parents of children with a metabolic disorder reported an even lower HRQoL than parents of children with other chronic disorders. Possibly, the uncertainty about the course of the disease and the limited life expectancy in many metabolic disorders are important factors in the low parental HRQoL. Therefore, we performed a cross-sectional study in parents of children with phenylketonuria (PKU, OMIM #261600) and galactosemia (OMIM #230400), metabolic disorders not affecting life expectancy, in order to investigate their HRQoL compared to parents of healthy children and to parents of children with other metabolic disorders. A total of 185 parents of children with PKU and galactosemia aged 1-19 years completed two questionnaires. Parents of children with PKU or galactosemia reported a HRQoL comparable to parents of healthy children and a significantly better HRQoL than parents of children with other metabolic disorders. Important predictors for parental mental HRQoL were the psychosocial factors emotional support and loss of friendship. As parental mental functioning influences the health, development and adjustment of their children, it is important that treating physicians also pay attention to the wellbeing of the parents. The insight that emotional support and loss of friendship influence the HRQoL of the parents enables treating physicians to provide better support for these parents

Safety of elective colorectal cancer surgery:Non-surgical complications and colectomies are targets for quality improvement

Background Mortality following severe complications (failure-to-rescue, FTR) is targeted in surgical quality improvement projects. Rates may differ between colon- and rectal cancer resections. Methods Analysis of patients undergoing elective colon and rectal cancer resections registered in the Dutch Surgical Colorectal Audit in 2011-2012. Severe complication- and FTR rates were compared between the groups in univariate and multivariate analysis. Results Colon cancer (CC) patients (n = 10,184) were older and had more comorbidity. Rectal cancer (RC) patients (n = 4,906) less often received an anastomosis and had more diverting stomas. Complication rates were higher in RC patients (24.8% vs. 18.3%, P <0.001). However, FTR rates were higher in CC patients (18.6% vs. 9.4%, P <0.001). Particularly, FTR associated with anastomotic leakage, postoperative bleeding, and infections was higher in CC patients. Adjusted for casemix, CC patients had a twofold risk of FTR compared to RC patients (OR 1.89, 95% CI 1.06-3.37). Conclusions Severe complication rates were lower in CC patients than in RC patients; however, the risk of dying following a severe complication was twice as high in CC patients, regardless of differences in characteristics between the groups. Efforts should be made to improve recognition and management of postoperative (non-)surgical complications, especially in colon cancer surgery. J. Surg. Oncol. 2014 109:???-???. (c) 2013 Wiley Periodicals, Inc

Self-managing teamwork and psychological well-being: Review of a multilevel research domain

Contains fulltext : 46994.pdf (publisher's version ) (Closed access)In this article, we present a qualitative discussion of 28 empirical studies on self-managing team-work and psychological well-being. We address three questions: (a) Which variables did they include and which results did they obtain?; (b) How did authors deal with issues of level of theory, measurement, and analysis?; and (c) Do such level issues affect the results of the studies? This review demonstrates that only job satisfaction is consistently related to self-managing teamwork. In addition, authors often fail to specify the level of their theory, thereby impeding judgment on the appropriateness of analysis procedures. Finally, we present preliminary evidence that level issues may affect the results. We plead for the incorporation of multilevel theory andanalysistechniquesintothefieldofself-managingteamworkandpsychologicalwell-being.15 p