Preferences for cancer survivorship care among adolescents and young adults who experienced healthcare transitions and their parents

Psihogios, Alexandra M.; Schwartz, Lisa A.; Deatrick, Janet A.; Hoeve, Elizabeth S. Ver; Anderson, Lindsay; Wartman, Elicia; Szalda, Dava

doi:10.1007/s11764-019-00781-x

Cited by 47 publications

(52 citation statements)

References 50 publications

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“…8,9 Indeed, studies have reported that over 60% of childhood and AYA cancer survivors experience adverse psychosocial, behavioral, and functional health outcomes that compromise their HRQoL for many years after completion of cancer treatment. 10 Key challenges affecting survivors' HRQoL include the following: (1) distressing experiences during active invasive cancer treatment (e.g., fear, pain, and nausea) 11,12 ; (2) psychosocial and emotional challenges both during and after treatment, including psychological distress, fear of recurrence, infertility, and reproductive/sexual health challenges [13][14][15] ; (3) limited knowledge about and engagement in survivorship care [16][17][18] ; and (4) impaired physical and functional health due to adverse and late effects of cancer treatment. [19][20][21] If left unaddressed, these challenges have been found to be associated with childhood and AYA cancer survivors' disengagement from survivorship care, reduced self-efficacy, increased risk health behaviors, including suicide, and compromised HRQoL.…”

Section: Introductionmentioning

confidence: 99%

Technology-Assisted Psychosocial Interventions for Childhood, Adolescent, and Young Adult Cancer Survivors: A Systematic Review and Meta-Analysis

Zhang

Zebrack

Acquati

et al. 2022

Journal of Adolescent and Young Adult Oncology

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Purpose: Technology-assisted interventions are essential in supporting cancer survivors' psychosocial outcomes, especially for childhood, adolescent, and young adult (AYA) cancer survivors, a tech-savvy generation. This study aims to systematically evaluate review and meta-analyze technology-assisted interventions for childhood and AYA cancer survivors. Methods: Following the Preferred Reporting Items for Systematic Review and Meta-Analysis (PRISMA) guidelines, the study team used a pre-set of key words and searched studies across 11 electronic databases and 4 professional websites, and conducted a manual search of reference lists from published reviews. Meta-analysis of small sample size corrected Hedges' g was conducted using meta-regression with robust variance estimation. Results: Final analysis included a total of 28 clinical trials, including 237 effect sizes reported an overall statistically significant treatment effect of technology-assisted psychosocial interventions for childhood and AYA cancer survivors, g = 0.382, 95% confidence interval (CI) 0.243 to 0.521, p < 0.0001. Subgroup analysis revealed that distraction-based interventions and interventions for psychosocial and emotional health were overall statistically significant, whereas interventions for childhood and AYA cancer survivors' cancer knowledge outcomes and physical and functional health outcomes were statistically nonsignificant. Moderator analysis found intervention target was a significant moderator. Conclusions: Technology-assisted interventions for childhood and AYA cancer survivors were overall effective across domains of survivorship outcomes. Favorable evidence was found primarily for childhood cancer survivors with limited support for AYA cancer survivors. Implications for Cancer Survivors: Although existing technology-assisted interventions are overall promising, research support for cancer survivors from different age groups and with different psychosocial challenges varies and should be considered individually.

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Section: Introductionmentioning

confidence: 99%

Technology-Assisted Psychosocial Interventions for Childhood, Adolescent, and Young Adult Cancer Survivors: A Systematic Review and Meta-Analysis

Zhang

Zebrack

Acquati

et al. 2022

Journal of Adolescent and Young Adult Oncology

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“…Adolescent and young adult (AYA) survivors represent a distinct and vulnerable subgroup, characterized by rapid biological and psychosocial identity‐forming changes that mark the passage from childhood to independent adult life. These developmental processes are disrupted in AYA ALL patients and survivors 14 and, in addition, AYA survivors face increased risk for unmet survivorship needs when transitioning from pediatric‐ to adult‐centered care 15,16 . The impact of physical and psychosocial effects is often quantified with standardized health‐related quality of life (HRQL) instruments, and scores are generally lower among childhood ALL survivors compared to healthy peers 17 .…”

Section: Introductionmentioning

confidence: 99%

Everyday life challenges among adolescent and young adult survivors of childhood acute lymphoblastic leukemia: An in‐depth qualitative study

et al. 2020

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Objective: As survival rates increase, growing numbers of childhood acute lymphoblastic leukemia (ALL) survivors are at risk for somatic and psychosocial late effects. Adolescent and young adult (AYA) survivors represent a distinct and vulnerable group. This study aimed to explore how AYA survivors of childhood ALL experience everyday life after cancer while adjusting to the potential impact of prior disease and treatment. Methods: Semi-structured interviews were performed with survivors aged 15-22 years. Criterion-based homogenous purposive sampling was used to identify similarities within the group. Data were analyzed using an inductive, thematic approach. Results: Data saturation occurred after 18 interviews. Identified themes included the post-chemo body, negotiating identities, and disruption. More than 80% reported physical or cognitive late effects, but survivors adapted to these and had a positive view on own health. However, a co-existing experience of frailty persisted. Social disruption during treatment had a negative impact on social relations even years following cure. Identity issues revolved around the paradox of seeking recognition for their cancer-related experiences, while also wanting to be treated like everyone else. Some participants aged 18-22 years experienced delayed reactions and a new, but unmet, need to process the past. Conclusions: AYA survivors of childhood ALL adapt well to their new life situations, but many experience ongoing cancer-related disruptions and experience not being fully understood. We suggest exploration and verbalization of these issues alongside somatic follow-up around the age of 16-18 years to support the AYA survivors during their transition into adulthood.

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“…However, AYA are often known to be less engaged in health care surveillance after treatment, 61 so it is imperative to be able to use tools that meet AYA at their level to optimize engagement in health behaviors. A recent focus group among AYA survivors 62 highlighted preferences for delivery of survivorship-oriented care. Preferences included the use of digital health tools (e.g., email, text messages, and patient portals) for sending and receiving health information, greater discussion with health care providers surrounding knowledge of late effects and side effects of cancer treatment, the need for psychosocial support around fear and uncertainty about health, and adapting models of health care to include greater inclusion of AYA developmental considerations (e.g., autonomy).…”

Section: Discussionmentioning

confidence: 99%

“…Often AYA feel that provider-related conversations focus on curing cancer that leads to a potential perceived lack of control over health. 62 Providers can instead reference that increasing health promoting behaviors and decreasing health risk behaviors are a means to help control one's health and potentially decrease late effects and secondary cancers. In fact, provider recommendations are often cited as the number one predictor in engagement with health promoting decisions.…”

Section: Discussionmentioning

confidence: 99%

Association of Demographic and Cancer-Specific Factors on Health Behavior Recommendations Specific to Cancer Prevention and Control Among Adolescent and Young Adult Survivors of Childhood Cancer

Darabos

Barakat

Schapira

et al. 2021

Journal of Adolescent and Young Adult Oncology

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Purpose: Adolescent and young adult survivors of childhood cancer (AYA) are at risk for long-term health problems that are exacerbated by not meeting health behavior recommendations (e.g., exercise). To identify AYA at risk for not meeting health behavior recommendations, we explored demographic (e.g., age) and cancer-specific (e.g., intensity of treatment) factors associated with not meeting specific health behavior recommendations that have implications for cancer prevention and control. Methods: Regression (linear/binary) was used to examine demographic and cancer-specific associates regarding fruit/vegetable intake, binge drinking, sleep duration, sunscreen use, tobacco use, and physical activity among 307 AYA (M age = 20.33, range = 15-34) across three combined studies, treated at a pediatric cancer center. Health behavior measures were adapted from The Health Behaviors Survey and the Youth Risk Behavior Surveillance System questionnaire. Results: AYA in general did not meet health behavior recommendations. Compared with AYA with public insurance, AYA with private insurance (b =-0.19, p < 0.01) were more likely to meet multiple health behavior recommendations. AYA at greatest risk for not meeting specific health behaviors were more likely to be diagnosed in middle childhood (11.35 years) compared with early childhood (8.38 years), be closer to diagnosis (8.77 years vs. 11.76 years) and closer to treatment completion (6.97 years vs. 9.91 years), and have a solid tumor (32.7%) compared with a brain tumor (10.6%). Conclusion: Not meeting health behavior recommendations is common among AYA survivors of childhood cancer. Early education in the context of survivorship care is critical to provide teachable moments to AYA; such interventions might impact future long-term health and reduce risk for secondary cancers.

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Preferences for cancer survivorship care among adolescents and young adults who experienced healthcare transitions and their parents

Cited by 47 publications

References 50 publications

Technology-Assisted Psychosocial Interventions for Childhood, Adolescent, and Young Adult Cancer Survivors: A Systematic Review and Meta-Analysis

Technology-Assisted Psychosocial Interventions for Childhood, Adolescent, and Young Adult Cancer Survivors: A Systematic Review and Meta-Analysis

Everyday life challenges among adolescent and young adult survivors of childhood acute lymphoblastic leukemia: An in‐depth qualitative study

Association of Demographic and Cancer-Specific Factors on Health Behavior Recommendations Specific to Cancer Prevention and Control Among Adolescent and Young Adult Survivors of Childhood Cancer

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