scholarly journals From “Beat Cancer” to “Apply to Graduate School”: How Goals Evolve During a 12-Month Period for Adolescents and Young Adults (AYAs) with a Cancer Diagnosis (SA510C)

2019 ◽  
Vol 57 (2) ◽  
pp. 447
Author(s):  
Krysta Barton ◽  
Nicole Etsekson ◽  
Claire Wharton ◽  
Miranda Bradford ◽  
Joyce Yi-Frazier ◽  
...  
JMIR Cancer ◽  
10.2196/12071 ◽  
2019 ◽  
Vol 5 (2) ◽  
pp. e12071 ◽  
Author(s):  
Lisa McCann ◽  
Kathryn Anne McMillan ◽  
Gemma Pugh

Background The last decade has seen an increase in the number of digital health interventions designed to support adolescents and young adults (AYAs) with cancer. Objective The objective of this review was to identify, characterize, and fully assess the quality, feasibility, and efficacy of existing digital health interventions developed specifically for AYAs, aged between 13 and 39 years, living with or beyond a cancer diagnosis. Methods Searches were performed in PubMed, EMBASE, and Web of Science to identify digital health interventions designed specifically for AYA living with or beyond a cancer diagnosis. Data on the characteristics and outcomes of each intervention were synthesized. Results A total of 4731 intervention studies were identified through the searches; 38 interventions (43 research papers) met the inclusion criteria. Most (20/38, 53%) were website-based interventions. Most studies focused on symptom management and medication adherence (15, 39%), behavior change (15, 39%), self-care (8, 21%), and emotional health (7, 18%). Most digital health interventions included multiple automated and communicative functions such as enriched information environments, automated follow-up messages, and access to peer support. Where reported (20, 53% of studies), AYAs’ subjective experience of using the digital platform was typically positive. The overall quality of the studies was found to be good (mean Quality Assessment Criteria for Evaluating Primary Research Papers from a Variety of Fields scores >68%). Some studies reported feasibility outcomes (uptake, acceptability, and attrition) but were not sufficiently powered to comment on intervention effects. Conclusions Numerous digital interventions have been developed and designed to support young people living with and beyond a diagnosis of cancer. However, many of these interventions have yet to be deployed, implemented, and evaluated at scale.


2016 ◽  
Vol 34 (26_suppl) ◽  
pp. 243-243
Author(s):  
Joelle P. Straehla ◽  
Krysta Shutske ◽  
Joyce P. Yi-Frazier ◽  
Claire M Wharton ◽  
Kevin Scott Baker ◽  
...  

243 Background: Much of the literature describing psychosocial consequences of cancer among adolescents and young adults (AYAs) has reported negative outcomes; however, AYAs also have potential for protective, positive outcomes. We aimed to prospectively characterize AYA patient-reported benefit and burden-finding after cancer diagnosis and hypothesized that benefit finding would be a salient coping mechanism. Methods: Semi-structured, 1:1 interviews were conducted with AYA patients after cancer diagnosis at 3 time points over 2 years, to elicit their expectations, hopes, worries, personal strengths, and challenges. A priori coding themes were defined from validated scales: changed sense of self, relationships, philosophy of life, and physical well-being. Verbatim transcripts were coded using content analyses by 3 independent coders for instances of benefit or burden by construct. Raw counts, ratios, and confidence intervals were calculated and compared by patient and time point. Results: Seventeen patients (mean age 17.1 ± 2.7; 8 [47%] male) completed 44 interviews with > 100 hours of transcript-data. Most common diagnoses were sarcoma (n = 8), acute leukemia (n = 6), and lymphoma (n = 3). Twelve patients completed all 3 interviews; reasons for withdrawal included death in all but 2 cases. Mean (±SD) counts of patient-reported benefit were higher than burden at each time point (T1, T2, T3); the benefit: burden ratio was > 1 in 68% of interviews (Table). Of the themes, changed sense of self was the most common benefit identified (44% of all reported benefits [95% CI 37%, 52%]) whereas physical complaints was the most common burden (32% [95% CI 25%, 39%]). Longitudinal analysis of subthemes among patients completing 3 interviews (N = 12) indicated an increase in self-identified positive and negative impact of cancer on personal, social and existential perspectives. Conclusions: AYA patients with cancer identified more benefits than burdens related to their diagnoses at all times studied. There was a shift over time in the distribution of benefit and burden finding constructs which may highlight areas for potential intervention. [Table: see text]


2017 ◽  
Vol 35 (15_suppl) ◽  
pp. e18095-e18095 ◽  
Author(s):  
Lia J. Smith ◽  
Andrea C. King ◽  
Xiaolei Lin ◽  
Donald Hedeker ◽  
Tara O. Henderson

e18095 Background: A cancer diagnosis in adolescents and young adults (AYA) comes at a complex developmental interval that often coincides with risky behaviors, such as substance use. Modifiable risk behaviors are an important area of research to minimize morbidity for AYA. Our goal was to examine substance use, affect, and other health indicators in a diverse AYA cancer patient sample. Methods: We identified patients between the ages of 18-39 years and 6 or more months from date of cancer diagnosis. Measures included demographic, general health and substance use variables, the Center for Epidemiologic Studies Depression Scale (CES-D), and the State-Trait Anxiety Inventory (STAI-T). Linear trend analyses were performed to examine group differences. Backward-selection ordinal regression analyses identified specific factors associated with risky health behaviors. Results: Participants (60% male; Mage = 27; 70% White; 14% Black) included 100 patients with primary diagnoses of lymphoma (N = 45); leukemia (N = 37); sarcoma (N = 10); other (N = 8). Median time from cancer diagnosis was 2 years (range 6 months - 20 years). Past year alcohol, cigarette, and marijuana use was reported in 80% ,15%, and 33% of participants, respectively. We classified three subgroups based on past year alcohol and smoking, including non-smoker/non-drinker (n = 20), non-smoker/drinker (n = 65), and smoker/drinker (n = 15). Linear trend analyses indicated that the groups did not differ on time since diagnosis, but the smoker/drinker group initiated drinking younger ( p< 0.01), were more likely to use marijuana in the past year ( p< 0.01), and had increased depressive symptoms (CES-D; p< 0.01), anxiety (STAI-T; p< 0.05), body pain ( p< 0.05), and poorer sleep quality ( p< 0.05). Backward model selection treating outcome categories as ordinal indicated that frequent marijuana use and poor sleep quality were associated with being a past year smoker/drinker. Conclusions: A sizeable portion of AYA cancer patients engage in drinking and smoking, which is associated with negative affect and poorer self-reported health. Targeted interventions should be considered to reduce risky behaviors in this population.


2020 ◽  
Vol 20 (1) ◽  
Author(s):  
Ruth I. Hart ◽  
David A. Cameron ◽  
Fiona J. Cowie ◽  
Jeni Harden ◽  
Nicholas B. Heaney ◽  
...  

Abstract Background Limited attention has been paid to adolescents and young adults’ (AYA's) experiences in the aftermath of a cancer diagnosis, despite this being a time when potentially life-changing decisions are made. We explored AYA’s and caregivers’ experiences of, and views about, making treatment and trial participation decisions following a cancer diagnosis, in order to understand, and help facilitate, informed treatment decision-making in this age group. Methods Interviews were undertaken with 18 AYA diagnosed, or re-diagnosed, with cancer when aged 16–24 years, and 15 parents/caregivers. Analysis focused on the identification and description of explanatory themes. Results Most AYA described being extremely unwell by the time of diagnosis and, consequently, experiencing difficulties processing the news. Distress and acceleration in clinical activity following diagnosis could further impede the absorption of treatment-relevant information. After referral to a specialist cancer unit, many AYA described quickly transitioning to a calm and pragmatic mind-set, and wanting to commence treatment at the earliest opportunity. Most reported seeing information about short-term side-effects of treatment as having limited relevance to their recovery-focused outlook at that time. AYA seldom indicated wanting to make choices about front-line treatment, with most preferring to defer decisions to health professionals. Even when charged with decisions about trial participation, AYA reported welcoming a strong health professional steer. Parents/caregivers attempted to compensate for AYA’s limited engagement with treatment-relevant information. However, in seeking to ensure AYA received the best treatment, these individuals had conflicting priorities and information needs. Conclusion Our study highlights the challenging context in which AYA are confronted with decisions about front-line treatment, and reveals how their responses make it hard to ensure their decisions are fully informed. It raises questions about the direct value, to AYA, of approaches that aim to promote decision-making by improving understanding and recall of information, though such approaches may be of value to caregivers. In seeking to improve information-giving and involvement in treatment-related decision-making at diagnosis, care should be taken not to delegitimize the preference of many AYA for a directive approach from trusted clinicians.


2019 ◽  
Vol 111 (11) ◽  
pp. 1152-1160 ◽  
Author(s):  
Theresa H M Keegan ◽  
Helen M Parsons ◽  
Yi Chen ◽  
Frances B Maguire ◽  
Cyllene R Morris ◽  
...  

Abstract Background Uninsured adolescents and young adults (AYAs) and those with publicly funded health insurance are more likely to be diagnosed with cancer at later stages. However, prior population-based studies have not distinguished between AYAs who were continuously uninsured from those who gained Medicaid coverage at the time of cancer diagnosis. Methods AYA patients (ages 15–39 years) with nine common cancers diagnosed from 2005 to 2014 were identified using California Cancer Registry data. This cohort was linked to California Medicaid enrollment files to determine continuous enrollment, discontinuous enrollment, or enrollment at diagnosis, with other types of insurance determined from registry data. Multivariable logistic regression was used to evaluate factors associated with later stages at diagnosis. Results The majority of 52 774 AYA cancer patients had private or military insurance (67.6%), followed by continuous Medicaid (12.4%), Medicaid at diagnosis (8.5%), discontinuous Medicaid (3.9%), other public insurance (1.6%), no insurance (2.9%), or unknown insurance (3.1%). Of the 13 069 with Medicaid insurance, 50.1% were continuously enrolled. Compared to those who were privately insured, AYAs who enrolled in Medicaid at diagnosis were 2.2–2.5 times more likely to be diagnosed with later stage disease, whereas AYAs discontinuously enrolled were 1.7–1.9 times and AYAs continuously enrolled were 1.4–1.5 times more likely to be diagnosed with later stage disease. Males, those residing in lower socioeconomic neighborhoods, and AYAs of Hispanic or black race and ethnicity (vs non-Hispanic white) were more likely to be diagnosed at a later stage, independent of insurance. Conclusions Our findings suggest that access to continuous medical insurance is important for decreasing the likelihood of late stage cancer diagnosis.


2019 ◽  
Vol 8 (3) ◽  
pp. 243-253
Author(s):  
Jin Mou ◽  
Effie L. Bolieu ◽  
Bethann M. Pflugeisen ◽  
Paul J. Amoroso ◽  
Beth Devine ◽  
...  

Author(s):  
Marc Allroggen ◽  
Peter Rehmann ◽  
Eva Schürch ◽  
Carolyn C. Morf ◽  
Michael Kölch

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.


Crisis ◽  
2009 ◽  
Vol 30 (3) ◽  
pp. 115-119 ◽  
Author(s):  
Stephanie De Munck ◽  
Gwendolyn Portzky ◽  
Kees Van Heeringen

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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