What Are the Psycho-Social and Information Needs of Adolescents and Young Adults Cancer Care Consumers with Intellectual Disability? A Systematic Review of Evidence with Recommendations for Future Research and Practice

People with intellectual disability have unmet health needs and experience health inequalities. There is limited literature regarding cancer care for children, adolescents, and young adults (AYA) with intellectual disability despite rising cancer incidence rates in this population. This systematic review aimed to identify the psycho-social and information support needs of AYA cancer care consumers with intellectual disability to generate recommendations for future research and cancer care service delivery enhancement. We searched eight databases yielding 798 articles. Following abstract and full-text review, we identified 12 articles meeting our inclusion criteria. Our three themes related to communication and accessible information; supports and system navigation, cancer service provider training, and reasonable adjustments. There was a lack of user-friendly, accessible information about cancer and screening programs available. Both paid and family carers are critical in accessing cancer supports, services, and screening programs for AYA with intellectual disability. Ongoing training should be provided to healthcare professionals regarding the importance of care screening for AYAs with intellectual disability. This review recommends that AYA with intellectual disability and their family carers be involved in developing tailored cancer services. This should focus on enabling inclusive screening programs, accessible consent, and challenging the enduring paternalism of support services via training and appropriate communication tools.

Download Full-text

Fertility preservation for transgender adolescents and young adults: a systematic review

Human Reproduction Update ◽

10.1093/humupd/dmz026 ◽

2019 ◽

Vol 25 (6) ◽

pp. 694-716 ◽

Cited By ~ 10

Author(s):

Shira Baram ◽

Samantha A Myers ◽

Samantha Yee ◽

Clifford L Librach

Keyword(s):

Systematic Review ◽

Young Adults ◽

Fertility Preservation ◽

Medical Data ◽

Adolescents And Young Adults ◽

Future Research ◽

Sex Reassignment Surgery ◽

Research Papers ◽

Knowledge And Beliefs ◽

Desire To Have Children

Abstract BACKGROUND Many transgender individuals choose to undergo gender-affirming hormone treatment (GAHT) and/or sex reassignment surgery (SRS) to alleviate the distress that is associated with gender dysphoria. Although these treatment options often succeed in alleviating such symptoms, they can also negatively impact future reproductive potential. OBJECTIVE AND RATIONALE The purpose of this systematic review was to synthesize the available psychosocial and medical literature on fertility preservation (FP) for transgender adolescents and young adults (TAYAs), to identify gaps in the current research and provide suggestions for future research directions. SEARCH METHODS A systematic review of English peer-reviewed papers published from 2001 onwards, using the preferred reporting items for systematic reviews and meta-analyses protocols (PRISMA-P) guidelines, was conducted. Four journal databases (Ovid MEDLINE, PubMed Medline, Ovid Embase and Ovid PsychINFO) were used to identify all relevant studies exploring psychosocial or medical aspects of FP in TAYAs. The search strategy used a combination of subject headings and generic terms related to the study topic and population. Bibliographies of the selected articles were also hand searched and cross-checked to ensure comprehensive coverage. All selected papers were independently reviewed by the co-authors. Characteristics of the studies, objectives and key findings were extracted, and a systematic review was conducted. OUTCOMES Included in the study were 19 psychosocial-based research papers and 21 medical-based research papers that explore fertility-related aspects specific for this population. Key psychosocial themes included the desire to have children for TAYAs; FP discussions, counselling and referrals provided by healthcare providers (HCPs); FP utilization; the attitudes, knowledge and beliefs of TAYAs, HCPs and the parents/guardians of TAYAs; and barriers to accessing FP. Key medical themes included fertility-related effects of GAHT, FP options and outcomes. From a synthesis of the literature, we conclude that there are many barriers preventing TAYAs from pursuing FP, including a lack of awareness of FP options, high costs, invasiveness of the available procedures and the potential psychological impact of the FP process. The available medical data on the reproductive effects of GAHT are diverse, and while detrimental effects are anticipated, the extent to which these effects are reversible is unknown. WIDER IMPLICATIONS FP counselling should begin as early as possible as a standard of care before GAHT to allow time for informed decisions. The current lack of high-quality medical data specific to FP counselling practice for this population means there is a reliance on expert opinion and extrapolation from studies in the cisgender population. Future research should include large-scale cohort studies (preferably multi-centered), longitudinal studies of TAYAs across the FP process, qualitative studies of the parents/guardians of TAYAs and studies evaluating the effectiveness of different strategies to improve the attitudes, knowledge and beliefs of HCPs.

Download Full-text

Interventions to Promote Positive Affect and Physical Activity in Children, Adolescents and Young Adults—A Systematic Review

Sports ◽

10.3390/sports8020026 ◽

2020 ◽

Vol 8 (2) ◽

pp. 26 ◽

Cited By ~ 1

Author(s):

Leon Klos ◽

Katharina Feil ◽

Tanja Eberhardt ◽

Darko Jekauc

Keyword(s):

Physical Activity ◽

Systematic Review ◽

Young Adults ◽

Positive Affect ◽

Social Cognitive ◽

Intervention Group ◽

Adolescents And Young Adults ◽

Future Research ◽

Healthy Children ◽

School Interventions

Interventions to promote physical activity (PA) in children, adolescents and young adults based on social-cognitive theories often fail to increase PA. In recent years, affect-based approaches have gained interest, but the current state of research is not sufficiently reported. Therefore, a systematic review about the influence of interventions to promote positive affect and PA enjoyment and PA in children, adolescents and young adults was conducted. Literature searches were carried out including studies published between September 2009 and April 2019. Intervention studies targeting healthy children, adolescents or young adults and measuring enjoyment and PA were included. Thirteen studies met the inclusion criteria, including five group-based PA interventions, three multi-component school interventions, two internet-based interventions and three exergaming interventions. Most studies use multiple components in their intervention. Group-based PA programs incorporating task-oriented teaching styles and opportunities for voluntary PA are most consistently associated with positive findings. This review shows moderate evidence of interventions for children, adolescents and young adults being effective in increasing enjoyment and PA. Besides physical education and comprehensive school interventions, heterogenous intervention designs limit the comparability of studies. Future research should focus on theory-based, multi-component interventions with mediator analyses.

Download Full-text

Neuroimaging Findings in Adolescents and Young Adults with Anorexia Nervosa: A Systematic Review

Children ◽

10.3390/children8020137 ◽

2021 ◽

Vol 8 (2) ◽

pp. 137

Author(s):

Kalliopi Kappou ◽

Myrto Ntougia ◽

Aikaterini Kourtesi ◽

Eleni Panagouli ◽

Elpis Vlachopapadopoulou ◽

...

Keyword(s):

Systematic Review ◽

Young Adults ◽

Anorexia Nervosa ◽

Large Scale ◽

Temporal Cortex ◽

Adolescents And Young Adults ◽

Pubmed Central ◽

Executive Control Network ◽

Young Females ◽

Weight Restoration

Background: Anorexia nervosa (AN) is a serious, multifactorial mental disorder affecting predominantly young females. This systematic review examines neuroimaging findings in adolescents and young adults up to 24 years old, in order to explore alterations associated with disease pathophysiology. Methods: Eligible studies on structural and functional brain neuroimaging were sought systematically in PubMed, CENTRAL and EMBASE databases up to 5 October 2020. Results: Thirty-three studies were included, investigating a total of 587 patients with a current diagnosis of AN and 663 healthy controls (HC). Global and regional grey matter (GM) volume reduction as well as white matter (WM) microstructure alterations were detected. The mainly affected regions were the prefrontal, parietal and temporal cortex, hippocampus, amygdala, insula, thalamus and cerebellum as well as various WM tracts such as corona radiata and superior longitudinal fasciculus (SLF). Regarding functional imaging, alterations were pointed out in large-scale brain networks, such as default mode network (DMN), executive control network (ECN) and salience network (SN). Most findings appear to reverse after weight restoration. Specific limitations of neuroimaging studies in still developing individuals are also discussed. Conclusions: Structural and functional alterations are present in the early course of the disease, most of them being partially or totally reversible. Nonetheless, neuroimaging findings have been open to many biological interpretations. Thus, more studies are needed to clarify their clinical significance.

Download Full-text

Corrigendum to “Mental health apps for adolescents and young adults: A systematic review of randomised controlled trials” [Child. Youth Serv. Rev. 127 (2021) 106073]

Children and Youth Services Review ◽

10.1016/j.childyouth.2021.106184 ◽

2021 ◽

pp. 106184

Author(s):

Teghan Leech ◽

Diana Dorstyn ◽

Amanda Taylor ◽

Wenjing Li

Keyword(s):

Mental Health ◽

Systematic Review ◽

Young Adults ◽

Randomised Controlled Trials ◽

Adolescents And Young Adults ◽

Controlled Trials ◽

Health Apps ◽

Randomised Controlled

Download Full-text

The Australian Youth Cancer Service: Developing and Monitoring the Activity of Nationally Coordinated Adolescent and Young Adult Cancer Care

Cancers ◽

10.3390/cancers13112675 ◽

2021 ◽

Vol 13 (11) ◽

pp. 2675

Author(s):

Pandora Patterson ◽

Kimberley R. Allison ◽

Helen Bibby ◽

Kate Thompson ◽

Jeremy Lewin ◽

...

Keyword(s):

Clinical Trial ◽

Young Adults ◽

Cancer Care ◽

Young Patients ◽

Adolescents And Young Adults ◽

Adolescent And Young Adult ◽

Trial Participation ◽

Clinical Trial Participation ◽

Activity Data ◽

Cancer Services

Adolescents and young adults (aged 15–25 years) diagnosed with cancer have unique medical and psychosocial experiences and care needs, distinct from those of paediatric and older adult patients. Since 2011, the Australian Youth Cancer Services have provided developmentally appropriate, multidisciplinary and comprehensive care to these young patients, facilitated by national service coordination and activity data collection and monitoring. This paper reports on how the Youth Cancer Services have conceptualised and delivered quality youth cancer care in four priority areas: clinical trial participation, oncofertility, psychosocial care and survivorship. National activity data collected by the Youth Cancer Services between 2016–17 and 2019–20 are used to illustrate how service monitoring processes have facilitated improvements in coordination and accountability across multiple indicators of quality youth cancer care, including clinical trial participation, access to fertility information and preservation, psychosocial screening and care and the transition from active treatment to survivorship. Accounts of both service delivery and monitoring and evaluation processes within the Australian Youth Cancer Services provide an exemplar of how coordinated initiatives may be employed to deliver, monitor and improve quality cancer care for adolescents and young adults.

Download Full-text

Determinants of social functioning among adolescents and young adults with cancer: a systematic review

Psycho-Oncology ◽

10.1002/pon.5740 ◽

2021 ◽

Author(s):

Clarissa E. Schilstra ◽

Joanna E. Fardell ◽

Mary A. Burns ◽

Sarah J. Ellis ◽

Antoinette C. Anazodo ◽

...

Keyword(s):

Systematic Review ◽

Young Adults ◽

Social Functioning ◽

Adolescents And Young Adults

Download Full-text

Quality of life in adolescents and young adults with CHD is not reduced: a systematic review and meta-analysis

Cardiology in the Young ◽

10.1017/s104795111500181x ◽

2015 ◽

Vol 26 (3) ◽

pp. 415-425 ◽

Cited By ~ 12

Author(s):

Morten Schrøder ◽

Kirsten A. Boisen ◽

Jesper Reimers ◽

Grete Teilmann ◽

Jesper Brok

Keyword(s):

Quality Of Life ◽

Systematic Review ◽

Young Adults ◽

Meta Analysis ◽

Adolescents And Young Adults ◽

Analysis Model ◽

Significant Difference ◽

Newcastle Ottawa Scale ◽

First Time

AbstractPurposeWe performed a systematic review and meta-analysis of observational studies assessing quality of life in adolescents and young adults born with CHD compared with age-matched controls.MethodsWe carried out a systematic search of the literature published in Medline, Embase, PsychINFO, and the Cochrane Library’s Database (1990–2013); two authors independently extracted data from the included studies. We used the Newcastle–Ottawa scale for quality assessment of studies. A random effects meta-analysis model was used. Heterogeneity was assessed using the I2-test.ResultsWe included 18 studies with 1786 patients. The studies were of acceptable-to-good quality. The meta-analysis of six studies on quality of life showed no significant difference – mean difference: −1.31; 95% confidence intervals: −6.51 to +3.89, I2=90.9% – between adolescents and young adults with CHD and controls. Similar results were found in 10 studies not eligible for the meta-analysis. In subdomains, it seems that patients had reduced physical quality of life; however, social functioning was comparable or better compared with controls.ConclusionFor the first time in a meta-analysis, we have shown that quality of life in adolescents and young adults with CHD is not reduced when compared with age-matched controls.

Download Full-text