Long Term Follow-up of Morbidity and Quality of Life Associated with Isolated Gastroschisis

Gastroschisis is a birth defect in which an opening in the abdominal wall allows herniation of the viscera. Prenatal counseling regarding gastroschisis typically discusses that, although these infants often endure a difficult neonatal course, they experience few long-term complications. However, information regarding long-term outcomes is based on limited studies that lack specificity. Therefore, we aimed to study the long-term morbidity and quality of life in children born with gastroschisis in a large and diverse population drawn from the Texas Birth Defects Registry (TBDR). Study packets with informed consent, a questionnaire, and the Pediatric Quality of Life Inventory Generic Core Scale 4.0 (PedsQL 4.0) in English and Spanish were mailed to 1,112 parents of children born with isolated gastroschisis in Texas between 1999 and 2008 via the TBDR. Information was abstracted from the TBDR for 58 mothers of children with gastroschisis who returned study materials. Three hundred fifty five packets were returned to sender, giving a response rate of 7.7%. Children born with gastroschisis had quality of life scores that were not significantly different than expected (p = 0.981). However, factors such as having a learning disability (p = 0.001) and missing school due to gastrointestinal issues (p = 0.020) were found to significantly decrease quality of life. Overall, children with gastroschisis had a significantly increased risk for learning disabilities regardless of whether they were preterm (p = 0.021) or full term (p = 0.021). Additionally, there appeared to be an increased risk for auditory impairment in Caucasian children (p < 0.0005). Therefore, while overall long-term quality of life is not significantly altered for children born with gastroschisis, the previously unreported increased risk for learning disabilities and possible association with hearing impairment are important findings that should be conveyed to prospective parents.

Markov blanket-based approach for learning multi-dimensional Bayesian network classifiers: An application to predict the European Quality of Life-5 Dimensions (EQ-5D) from the 39-item Parkinson's Disease Questionnaire (PDQ-39)

Multi-dimensional Bayesian network classifiers (MBCs) are probabilistic graphical models recently proposed to deal with multi-dimensional classification problems, where each instance in the data set has to be assigned to more than one class variable. In this paper, we propose a Markov blanket-based approach for learning MBCs from data. Basically, it consists of determining the Markov blanket around each class variable using the HITON algorithm, then specifying the directionality over the MBC subgraphs. Our approach is applied to the prediction problem of the European Quality of Life-5 Dimensions (EQ-5D) from the 39-item Parkinson’s Disease Questionnaire (PDQ-39) in order to estimate the health-related quality of life of Parkinson’s patients. Fivefold cross-validation experiments were carried out on randomly generated synthetic data sets, Yeast data set, as well as on a real-world Parkinson’s disease data set containing 488 patients. The experimental study, including comparison with additional Bayesian network-based approaches, back propagation for multi-label learning, multi-label k-nearest neighbor, multinomial logistic regression, ordinary least squares, and censored least absolute deviations, shows encouraging results in terms of predictive accuracy as well as the identification of dependence relationships among class and feature variables.

Social Indicators in the Sustainable Refurbishment: Calculating Quality of Life Indicator in a Residential Building in Málaga

How can we measure ‘quality of life’? The sustainable refurbishment goes beyond strictly energy aspects. Sustainability indicators are needed to facilitate data collection and to provide information which does not require too time-consuming calculations. Thus, you can offer an idea of the extent and quality of the rehabilitation before starting the project and, also, the obtained results can be evaluated in an agile way after the refurbishment. From a list of social indicators gathered from different methods, sustainability assessment tools and International and European standards, three social indicators are proposed: Users Satisfaction, Participation Agreement and Quality of Life. This paper shows the development of Quality of Life social indicator, the more closely related to the main objectives of Researchand Development Project “Sustainable Refurbishment”: improving energy efficiency and wellbeing of users in existing residential buildings. Finally, this social indicator is applied to a real case study in Málaga (Spain).

Effectiveness of home care programmes for patients with incurable cancer on their quality of life and time spent in hospital: systematic review

Objective: To investigate whether for patients with incurable cancer comprehensive home care programmes are more effective than standard care in maintaining the patients’ quality of life and reducing their “readmission time” (percentage of days spent in hospital from start of care till death).

Evaluation of quality of life related to nutritional status

The way in which the quality of life related to health (HRQoL) is affected by the nutritional status of the patient is a subject of constant interest and permanent debate. The purpose of the present paper is to review those studies that relate HRQoL to nutritional status and examine the tools (questionnaires) that they use to investigate this relationship. A critical review of published studies was carried out via an investigation of the following databases: MEDLINE (via PubMed); EMBASE; The Cochrane Library; Cumulative Index to Nursing and Allied Health Literature (CINAHL); Institute for Scientific Information (ISI) Web of Science; Latin American and Caribbean Health Sciences Literature (LILACS); Spanish Health Sciences Bibliographic Index (IBECS). The search was carried out from the earliest date possible until July 2007.The medical subject heading terms used were ‘quality of life’, ‘nutritional status’ and ‘questionnaires’. The articles had to contain at least one questionnaire that evaluated quality of life. Twenty-eight documents fulfilling the inclusion criteria were accepted, although none of them used a specific questionnaire to evaluate HRQoL related to nutritional status. However, some of them used a combination of generic questionnaires with the intention of evaluating the same. Only three studies selectively addressed the relationship between nutritional status and quality of life, this evaluation being performed not by means of specific questionnaires but by statistical analysis of data obtained via validated questionnaires.

Life satisfaction and health related quality of life during pregnancy and puerperium

Poster submitted to the 22nd International Conference Stress and Anxiety Research Society (STAR), Palma de Mallorca, July, 12-14, 2001.