scholarly journals Transition and transfer of adolescents and young adults with pediatric onset chronic disease: The patient and parent perspective

2014 ◽  
Vol 7 (1) ◽  
pp. 43-51 ◽  
Author(s):  
Susan M. Fernandes ◽  
Joanne O'Sullivan-Oliveira ◽  
Michael J. Landzberg ◽  
Paul Khairy ◽  
Patrice Melvin ◽  
...  
Keyword(s):  
Young Adults ◽  
Chronic Disease ◽  
Adolescents And Young Adults ◽  
Parent Perspective ◽  
Pediatric Onset

scholarly journals 7T MRI Visualization of Cortical Lesions in Adolescents and Young Adults with Pediatric-Onset Multiple Sclerosis

2017 ◽  
Vol 27 (5) ◽  
pp. 447-452 ◽  
Author(s):  
Ritobrato Datta ◽  
Varun Sethi ◽  
Sophia Ly ◽  
Amy T. Waldman ◽  
Sona Narula ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Young Adults ◽  
Adolescents And Young Adults ◽  
Cortical Lesions ◽  
Pediatric Onset

scholarly journals Use of Technology-Based Tools to Support Adolescents and Young Adults With Chronic Disease: Systematic Review and Meta-Analysis (Preprint)

2018 ◽  
Author(s):  
Jac Kee Low ◽  
Elizabeth Manias
Keyword(s):  
Systematic Review ◽  
Qualitative Research ◽  
Young Adults ◽  
Chronic Disease ◽  
Mobile App ◽  
Adolescents And Young Adults ◽  
Current Evidence ◽  
Efficacy Trials ◽  
Intervention Efficacy ◽  
Questionnaire Studies

BACKGROUND With the large amount of material that is readily available on the internet, there are endless opportunities for electronic health–literate patients to obtain and learn new information. Although novel, a Web- or mobile-based program can be a powerful way to engage adolescents and young adults (AYAs). The ongoing engagement of AYAs with chronic disease is vital not only to empower them but also to ensure a smooth transition from pediatric to adult health care. OBJECTIVE This study aimed to evaluate the current evidence on Web- or mobile-based interventions designed for AYAs. METHODS This review was registered with PROSPERO: CRD42018096487. A systematic search of MEDLINE Complete, EMBASE, and CINAHL Complete was conducted on April 10, 2019, for studies that examined the perspectives of transition-age patients about technology-based interventions, the process involved in intervention development, or the evaluation of intervention efficacy. For each study, the comprehensiveness of reporting was appraised. The Downs and Black checklist was used for intervention efficacy trials, the Standards for Reporting Qualitative Research checklist was used for qualitative work, and a 16-item tool developed by Tong et al was used for questionnaire research. RESULTS The search uncovered 29 relevant studies, which included qualitative studies (n=14), intervention efficacy studies (n=7), questionnaire studies (n=4), mixed qualitative and questionnaire studies (n=2), and a mixed qualitative and pilot randomized controlled trial study (n=1). The reporting comprehensiveness score of questionnaires was rated considerably lower (n=6, 13%-57% [2/16-8/14]) than the scores of intervention efficacy trials (n=8, 48%-85% [13/27-23/27]) and qualitative research (n=17, 40%-93% [8.5/21-19.5/21]). AYAs were receptive to obtaining information via a website or mobile app. An intervention was more likely to be perceived as useful by AYAs when there was a concerted effort to involve AYAs and subject matter experts in the process of intervention design, as opposed to relying solely on the AYAs or the experts alone. The preferred medium of intervention delivery varied greatly for AYAs, ranging from static text to audiovisual materials. However, AYAs considered being concise was the most important aspect. Across different conditions, AYAs were interested in receiving information on diverse topics, such as anxiety and stress management, dealing with insurance, and having social relationships. Patients also requested for disease-specific information, such as weather forecasts and pollen levels for patients with asthma and information related to the pretransplant period for organ transplant recipients. Meta-analyses showed no significant group differences across time on quality of life, self-efficacy, and self-management. CONCLUSIONS Owing to the lack of intervention efficacy trials, no conclusion can be drawn if an intervention delivered via a mobile app is better than that delivered via a website. However, through this systematic review, it is confirmed that AYAs were receptive to receiving medical information electronically.

scholarly journals Adolescents and Young Adults with Immune Thrombocytopenia (ITP): A Project of the Carmen-France and Parc-ITP Registry

Blood ◽  
2021 ◽  
Vol 138 (Supplement 1) ◽  
pp. 2079-2079
Author(s):  
Alexandra Schifferli ◽  
Guillaume Moulis ◽  
Bertrand Godeau ◽  
Thierry Leblanc ◽  
Marc Michel ◽  
...  
Keyword(s):  
Young Adults ◽  
Platelet Count ◽  
Chronic Disease ◽  
Board Of Directors ◽  
Clinical Data ◽  
Research Funding ◽  
Diagnostic Methods ◽  
Adolescents And Young Adults ◽  
Advisory Committees ◽  
Platelet Counts

Abstract Introduction The prognosis of ITP is age-related. In 80% of cases, children have a self-limiting course, whereas adults recover less frequently or relapse and overall ITP has a chronic course in ~70% of the cases. The risk of chronicity increases above the age of 10 years in pediatric cohorts, but data describing adolescents and young adults (AYAS) are lacking. Based on the assumption that adults are at greater risk of bleeding, treatment protocols and practice guidelines usually advise medical intervention. This is surely the right strategy for elderly patients or those with co-morbidities with indisputable higher bleeding risks. We assume that defining ITP in only two age categories might be an inaccurate oversimplification. AYAS have other needs, such as body appearance, mental health, social and financial issues. In addition, limitation of activity, side effects of steroids and risk of chronic disease are major reasons to adapt medical care. Even if AYAS have a similar risk of chronicity like adults, they may have greater potential to restore immune tolerance -in analogy to children- but with the help of an appropriate immunomodulatory therapy. The analysis of clinical data is the first step to design new strategies. Methods Data were extracted from the PARC-ITP and the CARMEN-France registry, open since 2004 and 2013, respectively. PARC is an international multi-center registry collecting data prospectively of children and adults with newly diagnosed ITP. The CARMEN-France registry enrolls all incident ITP in adults 18 years from the French Midi-Pyrénées region, and since 2016 increasingly in other French centers. Demographics, diagnostic methods, clinical data, management are continuously documented in CARMEN and at defined timepoints in PARC (initial, at 6,12 months follow-up (FU), and then yearly). Patients 12-25 years old with initial platelet counts <100x10 9/l were included. Patients with secondary or misdiagnosed ITP (n=57), and pregnant women were excluded (n=10). Sustained remission was defined as a platelet count 100x10 9/l at 12 months (measured at 11-18 months) and without treatment for at least 6 months. For patients with borderline values (100-149 x10 9/l), later FUs were analyzed to determine the persistency of remission, and, if necessary, reassign patient's remission state. Only bleeding location, but not grade was analyzed in common. Data were analyzed with descriptive statistics. Results A total of 656 AYAS (61% female) with the initial diagnosis of primary ITP were recorded in the combined database until 2021. FU information was available for 547 (83%) and 470 (72%) patients at 6 and 12 months, respectively. Initial median platelet count was 12 x10 9/l (IQR 5). In 109 patients the diagnosis was incidental (17%), 538 patients suffered of bleeding symptoms (82%) (Table 1). At 6 months 49% of patients had platelets <100 x10 9/l. At 12 months 50% fulfilled the criteria of chronic disease, with a median platelet count of 57x10 9/l (IQR 32). Asymptomatic chronic ITP was reported in 40% (no bleeding between 6-12 months). Platelet-enhancing drugs were reported in 66%, 45% and 30% at diagnosis, until 6 months and between 6-12 months, resp. Corticosteroids were preferred at all time-points, second-line treatments were various and given to 29% of patients with treatment beside 6 months (Table1). There were no differences in initial diagnostic procedures, comorbidity, bleeding symptoms, median platelet counts, percentage of severe thrombocytopenia (<20 x10 9/l) and need of treatment and drug choice between women and men (besides gynecological bleeding). There were small differences in the subgroup of adolescents (12-18 years, 59% female) compared to young adults (18-25 years, 70% female), the later had more moderate thrombocytopenia at diagnosis, less bleeding at all FUs, but similar or even more treatments (Table 2). Conclusion This is the first prospective project describing AYAS with a diagnosis of primary ITP. Analysis exhibited a clinical pattern among children and adults, with a risk of chronicity of 50%, and prolonged need of treatment (6-12 months) in 30% of cases. At diagnosis 17% had no bleeding signs, compared to 9% of children and 31% of adults in previous analysis of the PARC. There were no gender differences. Surprisingly, young adults experienced a greater number of non-bleeding phenotype than adolescents at all FUs, with comparable need of treatment between 6-12 months FU. Figure 1 Figure 1. Disclosures Schifferli: Novartis: Honoraria, Research Funding; Sobi: Honoraria. Moulis: Argenx: Membership on an entity's Board of Directors or advisory committees; Sobi: Membership on an entity's Board of Directors or advisory committees; Novartis: Membership on an entity's Board of Directors or advisory committees, Research Funding; Grifols: Membership on an entity's Board of Directors or advisory committees, Research Funding; Amgen: Membership on an entity's Board of Directors or advisory committees, Research Funding. Godeau: Novartis: Consultancy; Grifols: Consultancy; Sobi: Consultancy; Amgen: Consultancy. Michel: Rigel: Honoraria; Argenx: Honoraria; UCB: Honoraria; Alexion: Honoraria; Amgen: Consultancy; Novartis: Consultancy. Grainger: Amgen: Consultancy, Honoraria; Novartis: Consultancy, Honoraria. Kuehne: Amgen: Research Funding; SOBI: Honoraria; UCB: Honoraria; Novartis: Research Funding.

scholarly journals A Systematic Review of Transition Readiness in Youth with Chronic Disease

2019 ◽  
Vol 42 (7) ◽  
pp. 554-566 ◽  
Author(s):  
Maureen Varty ◽  
Lori L. Popejoy
Keyword(s):  
Young Adults ◽  
Chronic Disease ◽  
Chronically Ill ◽  
Adolescents And Young Adults ◽  
Adult Health ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Transition Readiness ◽  
Factors Associated ◽  
Modifiable Factors

The transition of chronically ill adolescents and young adults to adult health care is poorly managed, leading to poor outcomes due to insufficient disease knowledge and a lack of requisite skills to self-manage their chronic disease. This review analyzed 33 articles published between 2009 and 2019 to identify factors associated with transition readiness in adolescents and young adults with chronic diseases, which can be used to design effective interventions. Studies were predominantly cross-sectional survey designs that were guided by interdisciplinary research teams, assessed adolescents and young adults ages 12–26 years, and conducted in the outpatient setting. Modifiable factors, including psychosocial and self-management/transition education factors, and non-modifiable factors, including demographic/ecological and disease factors, associated with transition readiness were identified. Further research is necessary to address gaps identified in this review prior to intervention development, and there is a need for additional longitudinal studies designed to provide perspective on how transition readiness changes over time.

scholarly journals Hospital Readmission of Adolescents and Young Adults With Complex Chronic Disease

2019 ◽  
Vol 2 (7) ◽  
pp. e197613 ◽  
Author(s):  
Peter Dunbar ◽  
Matt Hall ◽  
James C. Gay ◽  
Clarissa Hoover ◽  
Jessica L. Markham ◽  
...  
Keyword(s):  
Young Adults ◽  
Chronic Disease ◽  
Hospital Readmission ◽  
Adolescents And Young Adults ◽  
Complex Chronic Disease

scholarly journals The 13-Item Sense of Coherence Scale in Dutch-Speaking Adolescents and Young Adults: Structural Validity, Age Trends, and Chronic Disease

2012 ◽  
Vol 52 (4) ◽  
pp. 351 ◽  
Author(s):  
Koen Luyckx ◽  
Eva Goossens ◽  
Silke Apers ◽  
Jessica Rassart ◽  
Theo Klimstra ◽  
...  
Keyword(s):  
Young Adults ◽  
Chronic Disease ◽  
Sense Of Coherence ◽  
Adolescents And Young Adults ◽  
Structural Validity ◽  
Age Trends

The Relationship Between Narcissism and Personality Traits of the Five-Factor-Model in Adolescents and Young Adults

2018 ◽  
Vol 46 (6) ◽  
pp. 516-522 ◽  
Author(s):  
Marc Allroggen ◽  
Peter Rehmann ◽  
Eva Schürch ◽  
Carolyn C. Morf ◽  
Michael Kölch
Keyword(s):  
Young Adults ◽  
Personality Traits ◽  
Five Factor Model ◽  
Self Report ◽  
Adolescents And Young Adults ◽  
Personality Factors ◽  
Big Five Personality ◽  
Grandiose Narcissism ◽  
Vulnerable Narcissism ◽  
The Relationship

Abstract.Narcissism is seen as a multidimensional construct that consists of two manifestations: grandiose and vulnerable narcissism. In order to define these two manifestations, their relationship to personality factors has increasingly become of interest. However, so far no studies have considered the relationship between different phenotypes of narcissism and personality factors in adolescents. Method: In a cross-sectional study, we examine a group of adolescents (n = 98; average age 16.77 years; 23.5 % female) with regard to the relationship between Big Five personality factors and pathological narcissism using self-report instruments. This group is compared to a group of young adults (n = 38; average age 19.69 years; 25.6 % female). Results: Grandiose narcissism is primarily related to low Agreeableness and Extraversion, vulnerable narcissism to Neuroticism. We do not find differences between adolescents and young adults concerning the relationship between grandiose and vulnerable narcissism and personality traits. Discussion: Vulnerable and grandiose narcissism can be well differentiated in adolescents, and the pattern does not show substantial differences compared to young adults.

Epidemiological Trends in Attempted Suicide in Adolescents and Young Adults Between 1996 and 2004

Crisis ◽  
2009 ◽  
Vol 30 (3) ◽  
pp. 115-119 ◽  
Author(s):  
Stephanie De Munck ◽  
Gwendolyn Portzky ◽  
Kees Van Heeringen
Keyword(s):  
Young Adults ◽  
Attempted Suicide ◽  
Suicide Attempts ◽  
Epidemiological Studies ◽  
Adolescents And Young Adults ◽  
University Hospital ◽  
International Studies ◽  
Suicide Attempters ◽  
Increased Risk ◽  
Epidemiological Trends

Background: Notwithstanding the epidemiological studies indicating an increased risk of attempted suicide among adolescents and young adults, there is a scarcity of international studies that examine long-term epidemiological trends in rates and characteristics of this vulnerable group. Aims: This article describes the results of a 9-year monitoring study of suicide attempts in adolescents and young adults referred to the Accident and Emergency Department of the Gent University Hospital (Belgium). Methods: Between January 1996 and December 2004, trends, sociodemographic, and methodrelated characteristics of suicide attempts were assessed by a psychiatrist on data sheets. Results: Attempted suicide rates declined from 1996 to 2001 and then rose until 2004, but did not exceed previous rates. During the 9 years of monitoring, there was a preponderance of female suicide attempters, except for 1997. Rates of attempts and of fatal suicide were negatively correlated. Significantly more males than females deliberately injured themselves. Younger attempters, especially females, significantly more often poisoned themselves with analgesics. In nearly one in five attempts, alcohol was used in combination with other methods, and alcohol intake was more commonly observed in older suicide attempters. Nearly half of the adolescents were identified as repeaters. Conclusions: The results of this study warrant further monitoring of trends and characteristics of young suicide attempters.

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