Scoping review of patient- and family-oriented outcomes and measures for chronic pediatric disease.

Improvements in health care for children with chronic diseases must be informed by research that emphasizes outcomes of importance to patients and families. To support a program of research in the field of rare inborn errors of metabolism (IEM), we conducted a broad scoping review of primary studies that: (i) focused on chronic pediatric diseases similar to IEM in etiology or manifestations and in complexity of management; (ii) reported patient- and/or family-oriented outcomes; and (iii) measured these outcomes using self-administered tools.We developed a comprehensive review protocol and implemented an electronic search strategy to identify relevant citations in Medline, EMBASE, DARE and Cochrane. Two reviewers applied pre-specified criteria to titles/abstracts using a liberal accelerated approach. Articles eligible for full-text review were screened by two independent reviewers with discrepancies resolved by consensus. One researcher abstracted data on study characteristics, patient- and family-oriented outcomes, and self-administered measures. Data were validated by a second researcher.4,118 citations were screened with 304 articles included. Across all included reports, the most-represented diseases were diabetes (35%), cerebral palsy (23%) and epilepsy (18%). We identified 43 unique patient- and family-oriented outcomes from among five emergent domains, with mental health outcomes appearing most frequently. The studies reported the use of 405 independent self-administered measures of these outcomes.Patient- and family-oriented research investigating chronic pediatric diseases emphasizes mental health and appears to be relatively well-developed in the diabetes literature. Future research can build on this foundation while identifying additional outcomes that are priorities for patients and families

A probabilistic tsunami hazard assessment for the Makran subduction zone at the northwestern Indian Ocean

Due to lack of sufficient historical data of tsunami in the Makran subduction zone (MSZ) at the northwestern Indian Ocean, a probabilistic method is employed to assess the tsunami hazards in this region. The method employs a combination of probability evaluation of offshore earthquake occurrence and numerical modeling of tsunami to determine the probability of tsunami wave height exceeding a certain level. The method allowed us to determine the likelihood of tsunami in the region which is a key component of any comprehensive tsunami hazard assessment. In this study, the results of seismic hazard assessment are validated using the previous estimates of the return period of large earthquakes in the MSZ. Also, we validated our numerical modeling of tsunami using historical observations of the Makran tsunami of 1945. It has been observed that the southern coasts of Iran and Pakistan as well as Muscat are the most vulnerable areas in the region to the impact of possible tsunami. The probability of having tsunami waves exceeding 5 m during the next 50 years in these coasts is 17.5 %. In addition, a probability value as high as 45 % during the next 50 years is found for moderate tsunamis along the southern coasts of Iran and Pakistan, as well as southern coast of Oman. Based on the results, the first priority for tsunami hazard mitigation planning in the region should be given to the development of inundation maps for the southern coasts of Iran and Pakistan as well as Muscat. Also, the development of a regional tsunami warning system in the Makran zone is necessary since there is a high probability for moderate tsunami in all Makran coasts