Integration of Patient-reported Outcome Measures in Pediatric Hematology: A Qualitative Methods Study.

Patient-reported outcome measures (PROMs) are self-reported questionnaires that allow patients and families to evaluate health-related experiences without influence or oversight from health care professionals. This study aimed to rate the relevance of existing PROMs for pediatric hematology patients, as identified by a recent systematic review, as well as to evaluate the receptivity of electronic PROM integration into clinical practice. Focus groups and interviews were conducted with children (10) and parents (19) impacted by nonmalignant hematological disorders, as well as with health care professionals (6). We observed strong support for the TranQol in thalassemia (100% for both parents [P] and children [C]); the Canadian Haemophilia Outcomes-Kids' Life Assessment Tool (CHO-KLAT) (100% P, 75% C) and Haemophilia Quality of Life questionnaire (Haemo-QoL) (100% P and C) in hemophilia; the Pediatric Quality of Life Inventory (PedsQL) Sickle Cell Module (75% P, 100% C); and the Kids ITP Tool in immune thrombocytopenia (100% P, 66.7% C). Generic tools such as the PedsQL Generic were met with mixed support. Electronic PROM integration received universal support. We obtained strong support for the integration of a web-based platform into clinical practice and a preference for disease-specific PROMs over generic PROMs. Future projects may explore the development of a child-friendly Canadian web-based platform to standardize quality-of-life evaluation within the clinical encounter.

Reducing Barriers to Optimal Automated External Defibrillator Use: An Elementary School Intervention Study.

Background: Timely use of an automated external defibrillator (AED) improves outcomes in sudden cardiopulmonary arrest (SCA). Our project aims were to: 1) identify the barriers to optimal AED use in the Québec City area elementary schools; 2) create targeted educational material regarding AEDs; and 3) measure the impact of the teaching module. Methods: Using a quality improvement in health-care framework, a survey exploring the barriers to AED use was sent to 139 elementary schools. We then developed a video teaching module on using AEDs to address these barriers. A convenience sample of 92 elementary school professionals participated in a mock scenario. Metrics related to AED use were assessed at baseline and after completing the post-teaching module. The primary outcome was the time to first shock and secondary outcomes consisted of evaluating the completion of each step required for safe and effective AED use. Results: The barrier analysis survey received a response rate of 52.5%. Most schools reported having an AED (95%), but 48.6% indicated that no formal training was offered. After the teaching module, the appropriate use of the AED in an SCA simulation improved from 53% to 92% (P < 0.001). The average time elapsed before first shock was 66 (95% confidence interval [CI], 63-70) seconds at baseline compared with 47 (95% CI, 45-49) seconds post-teaching module (P < 0.001). Conclusions: Lack of training, the main barrier to optimal use of AEDs in elementary schools, can be addressed through a brief video teaching module, thus improving the ability to deliver timely and effective defibrillation.

Contexte: L'utilisation rapide d'un défibrillateur externe automatisé (DEA) améliore les résultats en cas d'arrêt cardiorespiratoire soudain (ACS). Les objectifs de notre projet étaient les suivants : 1) déterminer les obstacles à l'utilisation optimale d'un DEA dans les écoles primaires de la région de Québec; 2) créer du matériel éducatif ciblé à propos des DEA; et 3) mesurer l'impact du module d'enseignement. Méthodologie: Dans le cadre d'un projet d'amélioration de la qualité des soins de santé, un sondage explorant les obstacles à l'utilisation des DEA a été envoyé à 139 écoles primaires. Nous avons ensuite mis au point un module d'enseignement vidéo sur l'utilisation des DEA afin de surmonter ces obstacles. Un échantillon de commodité comprenant 92 professionnels des écoles primaires a participé à un scénario fictif. Les paramètres liés à l'utilisation des DEA ont été évalués au départ et après le visionnement du module d'enseignement vidéo. Le principal critère d'évaluation était le temps écoulé entre l'ACS et l'administration du premier choc et les critères secondaires consistaient à évaluer la réalisation de chaque étape requise pour une utilisation sûre et efficace d'un DEA. Résultats: Le sondage d'analyse des obstacles a généré un taux de réponse de 52,5 %. La plupart des écoles ont signalé avoir un DEA (95 %), mais 48,6 % ont indiqué qu'aucune formation n'était offerte. Après le visionnement du module d'enseignement, l'utilisation appropriée du DEA dans le cadre d'une simulation d'ACS est passée de 53 à 92 % (P < 0,001). Le temps moyen écoulé avant l'administration du premier choc était de 66 secondes (intervalle de confiance [IC] à 95 %, 63-70) au départ, comparativement à 47 secondes (IC à 95 %, 45-49) après le visionnement du module d'enseignement (P < 0,001). Conclusions: Le principal obstacle à l'utilisation optimale d'un DEA dans les écoles primaires, soit l'absence de formation, peut être surmonté grâce à un court module d'enseignement vidéo, améliorant ainsi la capacité de procéder à une défibrillation rapide et efficace.

Patient-reported Outcome Measures in Pediatric Non-Malignant Hematology: A Systematic Review.

Patient-reported outcome measures (PROMs) are questionnaires completed by patients or caregivers without influence by health care professionals. As such, PROMs show subjective health experiences, enhance the clinical information available to providers, and inform clinical action. The objective of this systematic review is to identify and list which validated PROMs have been used to monitor health-related quality of life in pediatric patients with nonmalignant hematology (hemophilia, immune thrombocytopenia, sickle cell disease, and thalassemia). Databases (MEDLINE, Embase, HaPI, CINAHL, and PsycTESTS) were searched to identify publications that validated or used PROMs as an outcome measure in the 4 disease groups. Overall, 209 articles met the inclusion criteria, identifying 113 PROMs. Of the 113 identified PROMs, 95 are generic and can be used in multiple disease groups. The Pediatric Quality of Life Generic Core Scales was the most frequently used generic PROM (68 studies). The 18 remaining PROMs were disease specific. The results of this review, together with the COSMIN tool for selecting outcome measures, will allow clinicians to evaluate the PROMs that are best suited to their patient population. In addition, the focus groups are currently being conducted with patients, parents, and clinicians to determine the optimal use of PROMs in the clinical environment.