Patient‐reported outcome measures for allergy and asthma in children

There is increasing recognition of the importance of patient's perceptions of disease and their assessments of heathcare processes. Patient‐reported outcome measures (PROMs) are therefore now regarded as at least as important as the traditional objective measures of disease. For minors, parental and, except in the very young and severally cognitively impaired, the child's perspectives are important because they provide unique and complementary information. In this review, we summarize the evidence on PROMs for allergy and asthma for use in children. Overall, there are fewer PROMs available for use in children than in adults. We were able to identify some validated pediatric PROMs that have been developed for use in atopic eczema/dermatitis, food allergy, allergic rhinitis/rhinoconjunctivitis, and asthma. There is very limited evidence on deploying these instruments out with research settings. There is therefore a pressing need to report on the experiences of using PROMs for allergy and asthma in routine clinical care. In particular, there is a need to understand how acceptable these are to children/carers, whether they can be incorporated into routine clinical assessments and if they are responsive to changes in treatment made in routine clinical practice.     

A preliminary investigation of sleep quality and patient‐reported outcomes in pediatric solid organ transplant candidates

The current cross‐sectional, single‐center study aimed to examine sleep quality in a sample of adolescents awaiting solid organ transplantation and to explore associations between sleep quality and both health‐related quality of life and barriers to adherence. Thirty adolescents between the ages of 12 and 18 years (M age = 15.26, SD = 1.89) who were awaiting transplantation participated in this study. Participants completed measures of sleep quality, health‐related quality of life, and barriers to adherence. T test and correlational analyses were performed to examine study aims. Adolescents awaiting transplantation had significantly lower levels of overall sleep quality compared to published norms of healthy peers. Domains of sleep quality were positively related to emotional and psychosocial health‐related quality of life. Sleep quality domains were also negatively related to adherence barriers. This study provides preliminary evidence demonstrating that sleep quality among transplant candidates is compromised, and that poor sleep quality is related to adolescents’ functioning across a number of domains during the pretransplant period. Results highlight the clinical importance of assessing and targeting sleep functioning in adolescents awaiting transplantation in order to reduce the negative influence of suboptimal sleep on functioning during this vulnerable period.     

Health‐related quality of life in parents of pediatric solid organ transplant recipients in Japan

Few studies have examined HRQOL in pediatric Tx recipients’ parents. This study investigated HRQOL in these parents and relationships between HRQOL and perceived burden of nurturing, family functioning, and social support. Self‐report anonymous questionnaires and a survey of medical records were completed between September and December 2013. The SF‐36v2, which evaluates physical, psychological, and social health, was used to measure HRQOL. While values for physical and psychological health were higher than standard values (Cohen's d = 0.34 and 0.17, respectively), social health scores were lower (d = 0.21). “Parental consultation unrelated to donation” (standardized partial regression coefficient: β = ?0.52) was associated with physical health. “Family functioning” and “Commuting time between home and primary follow‐up hospital” (β = 0.57 and ?0.31) were related to psychological health. “Total score for perceived burden of nurturing” (β = ?0.31) was related to social health. Regarding parental HRQOL, while physical and psychological health was favorable, social health was impaired. In clinical practice, interventions targeting parents’ physical conditions and facilitation of community and family understanding and support to share recipients’ nurturing are important in improving parental HRQOL.     

Palliative and end‐of‐life care in pediatric solid organ transplantation

End‐of‐life care is a component of palliative care and takes a holistic, individualized approach to patients, focusing on the assessment of quality of life and its maintenance until the end of life, and beyond, for the patient's family. Transplant teams do not always make timely referrals to palliative care teams due to various clinician and perceived family barriers, an important one being the simultaneous, active care plan each patient would have alongside an end‐of‐life plan. Application of findings and further research specific to the pediatric solid organ population would be of significant benefit to guide transplant teams as to the most effective time to introduce end‐of‐life care, who to involve in ongoing discussions, and important ethical and cultural considerations to include in care planning. Attention must also be paid to clinician training and support in this challenging area of health care.     

Child and family adjustment following pediatric solid organ transplantation: Factors to consider during the early years post‐transplant

Adjusting to life after transplant can be challenging to pediatric solid organ transplant recipients and their families. In this review, we discuss a number of important factors to consider during the first 2–3 yr after transplant (defined as the “early years”), including transitioning from hospital to home, returning to physical activity, feeding and nutrition, school reentry, potential cognitive effects of transplant, family functioning, and QOL. We highlight steps that providers can take to optimize child and family adjustment during this period.     

Child and parent preferences for graphical display of patient‐reported outcome data

Patient‐reported outcome measures (PROs) generate reproducible, objective measures of patient functioning and symptoms. Clinical PRO use has proven benefits. Parent and child preferences for the graphical display of PRO data are not known. We conducted a qualitative study to determine preferences for graphical display of PRO data for use in the clinical setting. Participants were shown line graphs depicting a patient's PRO score with variations in orientation, shading and text. Final consensus graphs were elicited. Participants selected the graph with the highest level of visual and text interpretation of PRO scores.     

A scoping review of pediatric transplant education

Background

Education is crucial for pediatric patients and caregivers throughout the transplant continuum, yet data are lacking around which interventions are effective and in what circumstances.

Methods

We undertook a scoping review with the objectives of (a) describing the types, effects, and outcomes of patient-focused educational interventions before and after pediatric transplant and (b) understanding the educational experiences of patients and caregivers. Five scientific databases were explored for relevant literature using the JBI methodology. Educational interventions published in English, targeting pediatric solid organ transplant patients (0–25 years) and their caregivers were included. Relevant data from eligible articles (n = 27) were extracted and summarized.

Results

Eighteen articles describing 17 educational interventions were identified for objective A, and nine articles qualitatively assessing patient or parental learning needs were identified for objective B. Most interventions were directed toward teenage patients and their caregivers post kidney transplant, primarily focusing on medication self-management and adherence, or providing general information on transplant using multicomponent delivery formats. Most interventions achieved statistically significant improvements in knowledge (n = 8/9) and patients or caregivers expressed satisfaction with the intervention (n = 7/7) but health-related outcomes such as medication adherence (n = 2/6) or behavior change (n = 1/3) rarely achieved statistically significant results. In objective B, patients and caregivers described the transplant process as overwhelming, but indicated that social supports and education helped them cope. Participants consistently wanted more information than they received.

Conclusion

Caregivers and pediatric patients value transplant education, but high-quality studies are limited. Since education is a fundamental part of the transplant process, future research in this area should be prioritized.     

Subclinical cardiovascular changes in pediatric solid organ transplant recipients: A systematic review and meta‐analysis

CV disease is a major cause of morbidity and mortality following solid organ transplantation in adults. While the prevalence of multiple cardiometabolic risk factors is increased in pediatric solid organ transplant recipients, it is not clear whether they have subclinical CV changes. cIMT, central pWV, and CAC are indicative of subclinical CV disease, and, in adults, predict future CV events. The objective of this systematic review and meta‐analysis was to investigate the prevalence of subclinical CV changes, as measured by cIMT, pWV, and CAC among pediatric solid organ transplant recipients. We searched MEDLINE^® and EMBASE and conducted meta‐analysis for studies that evaluated cIMT, central pWV, and CAC among pediatric solid organ transplant recipients (kidney, lung, intestine and liver). The search identified nine eligible studies that included a total of 259 patients and 685 healthy controls. Eight studies reported on kidney transplant recipients and one study on a combined cohort of kidney and liver transplant recipients. The mean cIMT of transplant recipients was significantly higher than that of healthy controls (mean difference = 0.05 mm, 95% CI 0.02–0.07; p < 0.0001) with an estimated pooled prevalence of elevated cIMT of 56.0% (95% CI 17.0–95.0). The one study that assessed pWV showed increased vascular stiffness in transplant recipients compared to healthy controls. No studies assessing for CAC were found. There were limited data regarding subclinical CV disease following pediatric solid organ transplantation. In conclusion, kidney transplantation in childhood is associated with a higher prevalence of subclinical CV changes compared to healthy children. Longitudinal studies are needed to determine whether children have increased CV morbidity and mortality after transplantation.     

Epstein–Barr virus‐associated smooth muscle tumors in children following solid organ transplantation: A review

EBV‐SMT are a rare entity following organ transplantation. Given the rarity of the tumor, there is no standard approach to diagnosis and treatment. A literature search identified 28 reported cases of EBV‐SMT in addition to our own experience with one case. The aim of this review is to summarize the existing data regarding pathogenesis, diagnosis, and treatment.     

Prevention of cytomegalovirus following solid organ transplantation: A literature review

CMV is the most common opportunistic infection affecting SOT recipients. Although current strategies to prevent both CMV infection and disease have been effective, CMV related complications continue to occur, particularly late‐onset CMV disease. This literature review article examines the benefits and disadvantages of different prevention modalities, and presents emerging strategies to better prevent CMV in organ transplant recipients.