To improve on the quality and content of reporting, we developed a 7-Item Stakeholder Engagement Reporting Questionnaire. We recommend three directions for future research: 1) descriptive research on stakeholder-engagement in research; 2) evaluative research on the impact of stakeholder engagement on the relevance, transparency and adoption of research; and 3) development and validation of tools that can be used to support stakeholder engagement in future work.
AYAs and parents stakeholders emphasized the role of power differentials regarding shared knowledge, relationships and trust, and logistics. To mitigate power differentials, stakeholders recommended more materials, clearer definition of roles and in-person meetings. Perceived positive outcomes included diversity of perspectives provided, better understanding their own health and decision-making and improving CER.
Objective: The number of children and adolescents (hereafter referred to as ''children'') who have been prescribed secondgeneration antipsychotics (SGAs) has increased over the last decade, but little is known about monitoring practices in pediatric patients who are vulnerable to adverse effects. We examined factors associated with psychiatrists' self-reported monitoring of children who were prescribed SGAs. Methods: A survey was mailed to a national, randomly selected sample of 1600 child and adolescent psychiatrists from the American Medical Association mailing list. Using logistic regression, we tested whether psychiatrist characteristics, attitudes, and practice characteristics were associated with monitoring (baseline and/or periodic) the following: Patient history, height and weight, blood pressure, waist circumference, lipid and glucose levels, and electrocardiogram. Results: Among the analytic sample of 308, at least two thirds reported monitoring patient history, height and weight, blood pressure, and fasting plasma lipids and glucose; 23% reported monitoring waist circumference; and 12% reported conducting an electrocardiogram. More than one third stated that they routinely monitored thyroid levels and more than half reported monitoring complete blood count and electrolytes/blood urea nitrogen. Psychiatrists reporting that they were able to measure vital signs on site were more likely to measure height and weight. Those who reported feeling comfortable conducting a physical examination were more likely to measure blood pressure. Those answering that the risk of metabolic syndrome was low were less likely to measure blood pressure and waist circumference. Being board certified and able to measure vital signs on site were associated with more monitoring of glucose and lipid levels. Conversely, years in practice and feeling that patients were nonadherent with blood work were associated with less monitoring of glucose and lipid levels. Conclusions: In this sample, inconsistent monitoring patterns of children prescribed SGAs were found. Efforts to communicate guidelines' evidence base and improve office capacity to measure and track adverse effects are needed to increase appropriate adverse effect monitoring in children who have been prescribed SGAs.
PurposeHodgkin Lymphoma (HL) is highly curable with well-established treatment regimens; however, the impact on patient’s health-related quality of life (HRQL) from diagnosis through survivorship is unclear. This systematic review aimed to describe the available literature on HRQL in HL, assess the quality of these studies, identify gaps in the literature and recommend further areas of research.MethodsFollowing PRISMA guidelines, we performed a systematic review to include studies assessing the HRQL in HL patients. Articles identified through database searches were screened and data extracted. Quality was evaluated using a 6-point scale, adapted from published HRQL systematic reviews.ResultsSixty five articles published between 1986 and 2015 met inclusion criteria. These included 53 (82 %) cross-sectional studies; 12 (18 %) longitudinal studies, including three embedded in randomized trials; and three additional longitudinal studies that began assessment at diagnosis. Study sample sizes of HL patients varied considerably with only five (42 %) longitudinal studies including more than 50 patients. Multidimensional HRQL was assessed in 45 studies, single HRQL domains in 22 studies, and symptoms, including fatigue, in 28 studies.ConclusionsThe majority of studies employed a cross-sectional design, enrolling HL survivors at least 10 years after the completion of therapy. Emphasis on HRQL following therapy may inform initial treatment decisions and long-term survivorship goals. We recommend that future research include prospective, longitudinal randomized designs across both treatment and time.
Psychiatrists' attitudes about prescribing SGAs to children exhibiting aggressive symptoms were associated with off-label SGA use. Research is needed to understand the construct of aggression, potential interaction effects of aggression with diagnostic criteria, and their impact on SGA use.
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