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.
IntroductionEvidence supporting associations between cannabis use and many health outcomes is growing, however it remains unclear how such associations vary across the lifespan. We therefore aim to answer the following questions: (1) Are the risks of cannabis’s adverse effects on mental health and addiction-related outcomes different in adolescents than in adults? (2) What are the relationships between these cannabis’s adverse effects and (a) an individual’s age at first cannabis use, (b) age at assessment, and (c) duration of cannabis use?MethodsWe searched Medline, Embase, CINAHL, and PsychINFO from inception to 18 October 2021. Two reviewers independently screened studies and descriptively synthesized results.ResultsWe included 140 studies. Cannabis effects on mental health and addiction-related outcomes were worse in adolescents, early cannabis initiators and cannabis users who consumed for longest periods. Evidence of worse long-term adverse effects in adolescents was substantial for psychosis, cannabis, and nicotine use disorders; mixed for depression, suicidality, other substance use and disorders; and limited for anxiety. Additionally, acute cannabis exposure had the opposite trend with adults more often reporting adverse effects than adolescents.ConclusionThe available evidence suggests that cannabis use should be delayed as late as possible in adulthood and shortened in duration across the lifespan to decrease the risk of negative outcomes, while emphasizing the need for adapted harm reduction approaches. This scoping review provides evidence on the role of age and duration of exposure as determinants of cannabis-related adverse effects, which may inform prevention and harm reduction strategies.Systematic review registrationhttps://doi.org/10.17605/OSF.IO/BYG72
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