Holland Bloorview Kids Rehabilitation Hospital

Rationale: Lung volume recruitment (LVR) is prescribed for children with Duchenne muscular dystrophy (DMD) to maintain chest wall compliance and assist airway clearance. Objective: We aimed to determine if twice-daily LVR compared with standard treatment in children with DMD improved health-related quality of life (HRQOL) over 2 years. Methods: A multicenter, assessor-blinded randomized controlled trial was conducted among boys aged 6-16 years with DMD with forced vital capacity >30% predicted to undergo conventional treatment or conventional treatment and manual LVR twice daily for 2 years. The outcome was HRQOL measured by two validated instruments (Pediatric Quality of Life Inventory [PedsQL] generic version 4.0 and PedsQL DMD version 3.0) every 6 months. Results: Sixty-two boys (33 in the LVR group and 29 controls) with a median (IQR) age of 11.4 (9.4-13.4) years completed the study. Median (IQR) baseline HRQOL scores assessed by parent/caregiver PedsQL were 58.0 (41.9-67.0) and 55.2 (47.8-63.5) for the LVR and control groups. HRQOL trajectories were stable during the 2-year study period except in terms of parent communication, which improved. No statistically significant interactions were detected between visit and treatment group for any PedsQL outcomes. DMD PedsQL communication scores in the LVR group showed more positive change compared with controls. Treatment scores in the LVR group showed less positive change over time compared with controls; however, after correcting for multiple testing, the changes were no longer significant. Respiratory symptom rate did not differ between groups and was not associated with any HRQOL outcome. Conclusions: There was no difference in HRQOL between the LVR and control groups after 2 years. The burden of LVR did not appear to adversely affect HRQOL.

With growing access to the internet, online mindfulness programmes have become more commonly used to manage physical and mental health conditions. This scoping review aims to determine the nature and extent of the literature, and key characteristics, of online mindfulness-based interventions (MBIs) for adults with physical or mental health conditions.

A scoping review guided by the Joanna Briggs Institute framework.

MEDLINE, CINAHL, Embase, PsycINFO, Allied and Complementary Medicine and the Cochrane Central Register of Controlled Trials.

Studies focusing on online MBIs, online mindfulness-based stress reduction and online mindfulness-based cognitive therapy (MBCT) in adults with a physical or mental health condition were included.

Study and participant characteristics, key intervention characteristics, outcome measures and results were abstracted.

84 studies were included. Online MBIs have been studied in many different physical and mental health conditions; however, 63 of the included studies were for physical health conditions. MBCT was the most common intervention type assessed, with 33 of the included studies assessing it. Regarding intervention characteristics, intervention duration was similar across intervention type at 8 weeks, with sessions led by therapists, clinicians or mindfulness instructors. Web-based and videoconferencing were the most common delivery formats. Intervention content generally remained similar to standardised MBIs, with the addition of psychoeducation and disease management. Many studies did not report on tailoring the intervention to the participant population. There was a lack of consistency in reporting intervention characteristics.

This review highlights some evidence for online mindfulness programmes for both physical and mental health conditions. However, intervention componentry remains somewhat obscure, and reporting on tailoring appears relatively sparse. Greater consistency in reporting intervention componentry will improve knowledge and study in this area and enhance the translation of these interventions to clinical settings.

Children and youth who belong to a racially minoritized group commonly experience multiple and complex forms of discrimination and health disparities. The purpose of this review was to explore racial disparities in health care and health outcomes among children and youth with physical disabilities.

Six international databases (Ovid Medline, Healthstar, Embase, PsycINFO, Scopus, and Web of Science) were searched and screened for inclusion. A narrative synthesis was used to identify the common trends.

Thirty-seven articles met the inclusion criteria, which involved 218 555 children and youth with various types of physical disabilities spanning over 29 years. We noted the following trends: (1) racial disparities in accessing or receiving care; (2) racial disparities in health outcomes and mortality rates; and (3) factors affecting racial disparities. Most studies reported at least one finding indicating that racially minoritized youth had differential access to care and/or disparities in health outcomes compared to white youth.

Our findings highlight the concerning racial disparities among children and youth with physical disabilities within health care. There is an urgent need for advocacy and interventions at multiple levels to address the perpetual racism and racial disparities that racially minoritized youth with physical disabilities experience.Implications for rehabilitationThere is an urgent need for health care leaders and health care providers to address the systemic health inequalities in rehabilitation for racially minoritized children and youth with physical disabilities.Health care leaders and clinicians should recognize the racial disparities that racially minoritized youth with physical disabilities encounter in accessing or receiving care in addition to health outcomes.Health care leaders and decision-makers should advocate for policy change to optimize equitable and inclusive health care to enhance the well-being of racially minoritized children with disabilities.Health care providers should engage in training to understand how to recognize and address how intersectional forms of a child's identity such as disability, race, and socio-economic status can influence health care experiences and health outcomes.