Melissa Rubes

Child and parental reports of bullying in a consecutive sample of children with food allergy

OBJECTIVE: The social vulnerability that is associated with food allergy (FA) might predispose children with FA to bullying and harassment. This study sought to quantify the extent, methods, and correlates of bullying in a cohort of food-allergic children. METHODS: Patient and parent (83.6% mothers) pairs were consecutively recruited during allergy clinic visits to independently answer questionnaires. Bullying due to FA or for any cause, quality of life (QoL), and distress in both the child and parent were evaluated via questionnaires. RESULTS: Of 251 families who completed the surveys, 45.4% of the children and 36.3% of their parents indicated that the child had been bullied or harassed for any reason, and 31.5% of the children and 24.7% of the parents reported bullying specifically due to FA, frequently including threats with foods, primarily by classmates. Bullying was significantly associated with decreased QoL and increased distress in parents and children, independent of the reported severity of the allergy. A greater frequency of bullying was related to poorer QoL. Parents knew about the child-reported bullying in only 52.1% of the cases. Parental knowledge of bullying was associated with better QoL and less distress in the bullied children. CONCLUSIONS: Bullying is common in food-allergic children. It is associated with lower QoL and distress in children and their parents. Half of the bullying cases remain unknown to parents. When parents are aware of the bullying, the child’s QoL is better. It is important to proactively identify and address cases in this population.

Allocation of food allergy responsibilities and its correlates for children and adolescents

This study examined the degree to which children and adolescents with food allergy accept responsibility for their own care, and the extent to which greater self-management is associated with past history of a life-threatening allergic reaction or anxiety. For children (n = 190), caregiver and patient report of self-management was consistent, but agreement was poor for adolescent dyads (n = 59). History of a life-threatening allergic reaction was associated with greater self-management for children only, while among adolescents, it was associated with greater anxiety. Given that shifting to self-management may be challenging, discussion and preparation about this process is warranted.

The importance of mental health monitoring during transfer to adult care settings as examined among paediatric transplant recipients

Although the transfer out of paediatrics is established as a dangerous time for transplant recipients, the reasons for this are not well understood. One possible explanation is that in general, young adulthood is a period of vulnerability to psychological distress, which could impact self‐management. The purpose of the present study was to investigate whether psychological distress is associated with medication non‐adherence after transfer.

Utilizing Physician Screening Questions for Detecting Anxiety Among Food-Allergic Pediatric Patients

Objective. To explore the utility of clinician screening for anxiety in pediatric food-allergic patients. Study Design. In Phase I, 39 patients completed an anxiety questionnaire while their allergists completed a companion questionnaire estimating their patient’s responses. Allergists then attended an educational workshop to improve their anxiety detection. In Phase II, following the workshop, questionnaires were completed by an additional 39 patients and their allergists. Results. The percentage of clinician questionnaires with a “do not know” response decreased from 70% to 5% after the workshop. Correlation between allergists’ and children’s responses remained nonsignificant (r = .314, P = .321) before the workshop and after (r = .303, P = .068) and only 25% of patients who reported elevated anxiety were identified. Additionally, clinicians expressed poor acceptability of the screening. Conclusions. After the workshop, clinicians did not more accurately detect anxiety and found the process intrusive. Alternative methods for uncovering anxiety among high-risk patients are needed.

Ensuring that our families are truly informed: Considerations for consent in pediatric transplantation

The importance of informed consent when approaching parents in pediatric transplant settings about research, especially when medical stability has yet to be achieved, is at the heart of this issue’s paper by Dreyzin et al. (1). In this study, the authors importantly examined parent perspectives on whether or not to participate in a phase 1 hepatocyte transplant trial. Families were offered this option while waiting for a liver transplant and assured that participation would not affect their standing on the wait-list. Participants in the present study included six families who were approached about the trial (five participated and one declined). Interestingly, 10 other families declined participation and did not agree to complete this interview. Additionally, 10 families who would have been eligible while waiting for, and ultimately did receive, a liver transplant were included to determine their hypothetical considerations. Overall, the results of qualitative analyses suggested consistent areas of confusion that the authors suggest could have “adversely” affected trial participation and if addressed, could improve decision making. Perhaps a critical prerequisite to decision making from both an ethical and patient-centered standpoint is consideration of how to improve informed consent procedures under such difficult circumstances. The field of pediatric oncology contends with this situation frequently and a great deal of research reveals the complexities of this process according to different stakeholders. For example, a population-based survey administered to over 1400 parents in Germany identified from the German Childhood Cancer Registry examined parent recall of and satisfaction with the informed consent process for clinical trials (2). Data were indicative of troubling inadequacies (e.g., 14% of respondents did not recall if they were in a trial and 3% reported incorrect recall of this; only 71% remembered providing written consent). Overall, 79% felt adequately informed. It seems unacceptable that 21% were not. Findings were exacerbated in families with one or more foreign-born parents. Of great concern, this finding has been echoed and amplified in a United States sample with researchers finding that clinicians provide less information to minority and low socioeconomic status families, which in turn leads to less engagement with the informed consent process (3). Additionally, the blur between research and clinical care indicated in this issue’s paper was highlighted here as well, in that over 50% of respondents endorsed that receiving better treatment was their motive for participating. There are a myriad of reasons why the informed consent process may become muddled that are quite relevant to pediatric transplantation. These include parent emotional stress, the clarity of research protocols, and a sense of dependency on the treatment team (4). Parents are striving to make the best decisions for their child. In an incredibly taxing context, it can become extremely difficult to distinguish between choosing to participate in research and making decisions about treatment. Clinicians recognize the anxiety faced by parents in such circumstances (5); however, the informed consent process may not adequately relieve this anxiety and confusion experienced by parents. Physicians are expected to address what Appelbaum et al. (6) coined as “therapeutic misconception,” the incorrect beliefs held by study participants that their individual needs will be considered in the research protocol and that there is a high likelihood of direct benefit from participation. However, clinicians may not sufficiently address patient misconceptions during the