Challenges in implementing The Institute of Medicine systematic review standards

Abstract: In 2011, The Institute of Medicine (IOM) identified a set of methodological standards to improve the validity, trustworthiness, and usefulness of systematic reviews. These standards, based on a mix of theoretical principles, empiric evidence, and commonly considered best practices, set a high bar for authors of systematic reviews. Based on over 15 years of experience conducting systematic reviews, the Agency for Healthcare Research and Quality Evidence-based Practice Center (EPC) program has examined the EPC’s adherence and agreement with the IOM standards. Even such a large program, with infrastructure and resource support, found challenges in implementing all of the IOM standards. We summarize some of the challenges in implementing the IOM standards as a whole and suggest some considerations for individual or smaller research groups needing to prioritize which standards to adhere to, yet still achieve the highest quality and utility possible for their systematic reviews

Parental caregiving of children prior to hematopoietic stem cell transplant

Using the Caregiver Reaction Assessment (CRA), we assessed positive reactions and burdens of the caregiving experience among parental caregivers (n = 189) of children scheduled to undergo hematopoietic stem cell transplant. Although widely used in non-parental caregivers, the CRA has not been used in parents of pediatric patients. Reliability (Cronbach’s alpha: .72–.81 vs. .63) and concurrent validity (correlation: .41–.61 vs. .28) were higher for negatively framed than positively framed subscales. Results indicate that the caregiving experience is complex. The parents experienced high caregiver’s esteem and moderate family support, but also negative impacts on finances and schedule, and to a lesser degree, health. Compared to non-parental caregivers, parental caregivers experienced higher esteem and more impact on finances and schedule

Changing factors associated with parent activation after pediatric hematopoietic stem cell transplant

To identify factors associated with parent activation in parents of children undergoing pediatric hematopoietic stem cell transplant (HSCT) in the 6 months following HSCT, and to address if their association with parent activation changes over time

Factors Associated With Parental Activation in Pediatric Hematopoietic Stem Cell Transplant

Patient activation, the extension of self-efficacy into self-management, is an essential component of effective chronic care. In pediatric populations, caregiver activation is also needed for proper disease management. This study investigates the relationships between parental activation and other characteristics of parent–child dyads (N = 198) presenting for pediatric hematopoietic stem cell transplant. Parental activation concerning their child’s health was assessed using the Parent Patient Activation Measure (Parent-PAM), a modified version of the well-validated Patient Activation Measure (PAM). Using hierarchical linear regression and following the Belsky process model for determining parenting behaviors, a multivariate model was created for parental activation on behalf of their child that showed that the parent’s age, rating of their own general health, self-activation, and duration of the child’s illness were significantly related to Parent-PAM score. Our findings characterize a potentially distinct form of activation in a parent–child cohort preparing for a demanding clinical course

Changing factors associated with parent activation after pediatric hematopoietic stem cell transplant

PURPOSE: To identify factors associated with parent activation in parents of children undergoing pediatric hematopoietic stem cell transplant (HSCT) in the 6 months following HSCT, and to address if their association with parent activation changes over time. METHODS: Measures for this analysis, including the Parent Patient Activation Measure (Parent-PAM), were completed by parents (N=198) prior to their child’s HSCT preparative regimen and again at 6 months post-HSCT. Clinical data were also collected. A repeated measures model was built to estimate the association between clinical and demographic factors and parent well-being on Parent-PAM scores. Interactions with time were considered to test for changing effects over time. RESULTS: Throughout the HSCT course, older parent age was associated with lower Parent-PAM scores (β=−0.29, p=0.02) and never being married was associated with higher scores (versus married, β=12.27, p=0.03). While higher parent emotional functioning scores were not associated with activation at baseline, they were important at 6 months (baseline: β=−0.002, p=0.96; interaction: β=0.14, p=0.03). At baseline longer duration of illness was associated with increased activation, but this effect diminished with time (baseline: β=3.29, p=0.0002; interaction: β=−2.40, p=0.02). Activation levels dropped for parents of children who went from private to public insurance (baseline: β=2.95, p=0.53; interaction: β=−13.82, p=0.004). Clinical events did not affect Parent-PAM scores. CONCLUSIONS: Our findings reveal important changes in the factors associated with parent activation in the first 6 months after pediatric HSCT. These findings may reflect the emotional and financial toll of pediatric HSCT on parent activation