Systematic Review: Associations Between Family Functioning and Child Adjustment After Pediatric Cancer Diagnosis: A Meta-Analysis

Objectives A systematic review and meta-analysis was conducted to investigate associations between family functioning and child adjustment (patient/siblings) after pediatric cancer diagnosis. Methods Database searches were performed using Web of Science, Pubmed, Cochrane, PsycInfo, and Embase. After screening 5,563 articles, 35 were identified regarding this topic; 30 contributed data for meta-analyses. Pearson’srcorrelations were the effect of interest. Omnibus and family functioning domain-specific random-effects meta-analyses were conducted. Data are depicted in forest plots. Results A statistically significant association was found between family functioning and child adjustment (patient/siblings) after cancer diagnosis (r = 0.19; 95% CI: 0.13–0.24). Greater family cohesion, expressiveness, and support and less family conflict were each associated with better child adjustment outcomes. Conclusions Family functioning is associated with patient and sibling adjustment after pediatric cancer diagnosis. Limitations in the existing literature preclude strong conclusions about the size of these effects and potential moderators

Adolescent Self-Regulation and the Influence of Peer Victimization: Examining Dynamic Interactions

Self-regulation is essential for successful social functioning, yet more remains to be understood about the influence of peers on this important developmental skill. This study examined the influence of verbal peer victimization on the growth of self-regulation across four years of early adolescence using parallel process growth modeling. For all adolescents, higher levels of self-regulation buffered early adolescents from the effects of negative peer interactions. In addition, early adolescents with initially low levels of self-regulation also had higher levels of depression and experienced higher levels of peer victimization than their better regulated peers. Importantly the Family Check-Up, a brief preventative intervention, resulted in improvements in self-regulation that was sustained over time. The relationship between peer victimization and self-regulation was not predictive; however, a significant persisting association was observed suggesting that improvements in adolescent self-regulation abilities help buffer youth from the impact of negative peer interactions. This research highlights the importance of the social context on the development of self-regulation during adolescence and contributes novel findings of the effect of contextual variables on self-regulation development. These findings support an ecological prevention approach, including family-centered intervention and social-emotional curricula, to promote increased self-regulation and reduce peer victimization among adolescents

Illustration of patient-reported outcome challenges and solutions in rare diseases: a systematic review in Cushing’s syndrome

Abstract Rare diseases are often not fully understood and efforts put in investigating it from patient perspective are usually met with challenges. We performed a systematic literature review (SLR) for the last 20 years in Cushing’s Syndrome (CS) to illustrate Patient-Reported Outcome (PRO) challenges, and show what solutions were found. PROs and other Clinical Outcome Assessment (COA) used with CS patients were reviewed in 36 studies. Two CS-specific Health Related Quality of Life (HRQL) measures were identified (i.e., CushingQoL, Tuebingen CD-25), as well as depression and neurocognitive measures. For CS-specific HRQL measures, the CushingQoL was the most widely used measure due in part to being the first CS-specific HRQL measure developed. With algorithms mapping the CushingQoL to both the SF-6D and EQ-5D, the CushingQoL could be used to facilitate economic modelling studies in the absence of a generic HRQL measure. While the CushingQoL offers only the global scale and two subscales compared to the six subscales of the Tuebingen CD-25, there is not yet adequate statistical validation data available for the Tuebingen CD-25 to suggest it can withstand the scrutiny of review by multiple stakeholders. Results of this review indicate that the inclusion of a measure of depressive symptoms, such as the BDI-II or similar measure, would be reasonable to include given the high level of comorbidity of depression among CS patients. A brief neurocognitive performance outcome, such as Trail Making tasks A and D or Digit Symbol, could help inform the interpretation of HRQL results. Neurocognitive differences may be an unassessed mediator of HRQL outcomes, partly accounting for the persistence of depressive symptoms and HRQL deficits despite treatment. Results suggest that HRQL improvements are possible within this population. These results are limited by small sample sizes and pre/post study design. CS showcases the difficulties encountered in measuring PROs in rare diseases. A solution for this specific case was developed in the form of dedicated PRO instruments, the CushingQOL and the Tuebingen-25. However, some aspects of CS may not be fully answered or not yet validated (e.g., depressive and cognitive symptoms). Further research needs to be done to address them

When insulin degludec enhances quality of life in patients with type 2 diabetes: a qualitative investigation

Abstract Background Anecdotal reports suggest that insulin degludec (IDeg) may offer unique health-related quality of life (HRQoL) benefits. As the nature of these benefits remain unclear, this study utilized qualitative research methods to investigate and elucidate the experience of “feeling better” after initiating IDeg. Methods Twenty adults with type 2 diabetes (T2D) who reported “feeling better” on IDeg for > 3 months participated in 90-min interviews. One focus group and nine telephone interviews were conducted at two sites in the United States (US) and one focus group was conducted in Switzerland. Patients were ≥ 18 years of age, did not take mealtime insulin, and had switched to IDeg from another basal insulin. Discussions were audio-recorded, transcribed and translated (Swiss German). Utilizing grounded theory, transcripts were analyzed by sorting quotes into concepts using thematic analysis. Results Participants' mean age was 66 years and the average duration of T2D was 17.6 years. Mean duration of IDeg use was 1.45 years. Four major factors were identified as key contributors to patients’ sense of “feeling better”: 1) reduced sense of diabetes as burdensome and requiring excessive attention; 2) enhanced feelings of adaptability and freedom; 3) heightened sense of security, especially regarding concerns about hypoglycemia; and 4) greater sense of physical well-being (greater energy/less fatigue). Content saturation was achieved. Generally, patients from the US sites were more focused on medical results than Swiss patients, who were more likely to identify IDeg’s effect on overall HRQoL. A limitation of the study was that the population was primarily white, > 60 and otherwise healthy (no comorbid physical or mental condition). Conclusions A group of patients with T2D, who had switched to IDeg from another basal insulin, reported HRQoL benefits which were attributed to both diabetes-specific improvements (feeling less burdened by day-to-day diabetes demands) and non-specific gains (greater energy). The conclusions may have limited transferability due to the characteristics of the sample population and further research is needed