Stress in Parents of Children With Genetically Determined Leukoencephalopathies: A Pilot Study.

Genetically determined leukoencephalopathies comprise a group of rare inherited white matter disorders. The majority are progressive diseases resulting in early death. We performed a cross-sectional pilot study including 55 parents from 36 families to assess the level of stress experienced by parents of patients with genetically determined leukoencephalopathies, aged 1 month to 12 years. Thirty-four mothers and 21 fathers completed the Parenting Stress Index-4th Edition. One demographic questionnaire was completed per family. Detailed clinical data was gathered on all patients. Statistical analysis was performed with total stress percentile score as the primary outcome. Mothers and fathers had significantly higher stress levels compared with the normative sample; 20% of parents had high levels of stress whereas 11% had clinically significant levels of stress. Mothers and fathers had comparable total stress percentile scores. We identified pediatric behavioral difficulties and gross motor function to be factors influencing stress in mothers. Our study is the first to examine parental stress in this population and highlights the need for parental support early in the disease course. In this pilot study, we demonstrated that using the Parenting Stress Index-4th Edition to assess stress levels in parents of patients with genetically determined leukoencephalopathies is feasible, leads to valuable and actionable results, and should be used in larger, prospective studies.

Psychological distress in frequent users of primary health care and emergency departments: a scoping review.

INTRODUCTION: Frequent users of healthcare services are a small proportion of patients with disproportionately high healthcare usage. A wide array of factors, including psychological distress, leads to frequent use of healthcare services. There is no existing synthesis of research on frequent use and psychological distress in the general population. This scoping review aimed to compare psychological distress between frequent and non-frequent users and to examine the association between psychological distress and frequent use of healthcare services in primary care and emergency department (ED) services. METHODS: A scoping review was performed following the five steps defined by Arksey and O'Malley. A search strategy was developed with an information specialist in five databases (Medline, PsycINFO, CINAHL, SCOPUS, and PubMed) for articles in English published between 1963 and October 2018. To be included, studies had to be quantitative, have taken place in a primary care or ED setting, have documented frequent use, and have measured psychological distress in patients. Two team members independently gathered the data for each of the included studies. Results were collated, summarized, and reported using narrative synthesis. RESULTS: Seven studies met the inclusion criteria. Psychological distress in primary care is generally higher in frequent users, and increased psychological distress scores are associated with frequent use. Both studies set in EDs reported noteworthy findings, stating that frequent users reported higher levels of psychological distress and that psychological distress was associated with frequent use. CONCLUSION: Psychological distress is prevalent in frequent users and has a significant association with frequent use. As such, psychological distress should be evaluated by physicians to prevent or reduce frequent use and to identify candidates for interventions.

The epidemiology of multicomponent blood transfusion: a systematic review.

We performed a systematic review to describe the prevalence of multicomponent blood transfusion and, as a secondary objective, to determine patient characteristics and outcomes associated with multicomponent transfusion. There is a lack of literature on the epidemiology of multicomponent transfusion as most studies concentrate on a single blood product and its utilisation. Patient care and blood management can be optimised by better understanding the patients who receive multicomponent transfusions. The databases Medline, EMBASE and the Cochrane Library of Systematic Reviews were searched. Observational cohort and cross-sectional studies of hospital patients reporting on multicomponent transfusion prevalence or on patient characteristics and outcomes associated with multicomponent transfusion were included. A descriptive synthesis of studies was performed. A total of 37 eligible studies were included. It was found that multicomponent transfusion prevalence varied greatly by patient population and by the combination of blood products given in the multicomponent transfusion. Multicomponent-transfused patients included burn, cardiac surgery, liver surgery and transplant, cancer, infectious diseases, trauma and intensive care unit patients. Five studies found associations between multicomponent transfusion and adverse health outcomes; however, these findings are likely confounded by indication. The overall quality of evidence was low given a fair-to-poor individual study quality, inconsistent multicomponent transfusion prevalence estimates and confounding by indication. Further research is needed to better understand the epidemiology of multicomponent transfusion, including studies on multicomponent transfusion in haematological cancer patients and studies looking for patient characteristics that can better predict multicomponent transfusion need.