Young Adult Brain Tumor Survivors Research Articles

Personal, Disability, and Psychosocial Correlates of Career Barriers among Young Adult Brain Tumor Survivors

Personal, Disability, and Psychosocial Correlates of Career Barriers among Young Adult Brain Tumor Survivors

Experiences and Unmet Needs of Adolescent and Young Adult Survivors of a Brain Tumor (Aged 15–39 Years)

Background Brain tumors account for 15% of all adolescent and young adult cancers, and survivors are at risk of ongoing late effects that can severely impact their ability to reach independence. Despite follow-up initiatives advocating a personalized approach, survivors continue to experience ongoing sequelae. A better understanding of the survivorship experience is required to ensure services are able to deliver personalized support. Objective The aim of this systematic search and meta-ethnography was to identify and synthesize qualitative studies to better understand the experiences, perspectives, and needs of adolescent and young adult brain tumor survivors. Methods Five databases were searched using predefined criteria, studies were independently screened by two researchers, and those meeting inclusion criteria were synthesized. Results Twenty-seven studies were synthesized, generating 2 main themes, each with subthemes: (1) individual factors impacting resilience, namely, positive coping styles, managing emotions, and family functioning, and (2) cancer-related factors that challenge the individual, namely, living with societal expectations and barriers to coping. Conclusion The conceptual framework illustrates the challenges and resilience of survivors along the continuum from adolescence to adulthood, reflecting the needs of this age group in 1 model, despite it being a time of rapid growth. The lack of awareness of potential physical and emotional late effects challenges individual resilience, which is further challenged when significant milestones cannot be reached. Implications for Practice There is a role for follow-up services to identify and address unmet needs, provide better information to equip survivors to manage late effects, and support families, particularly those who underwent more intensive treatment.

Social Participation and Navigation with Adolescent and Young Adult Brain Tumor Survivors: Usability and Potential Benefits

Social Participation and Navigation with Adolescent and Young Adult Brain Tumor Survivors: Usability and Potential Benefits

Social Participation and Navigation (SPAN): Usability Testing of Website and Application for Youth and Young Adults With Acquired Brain Injuries

Abstract Date Presented 03/27/20 A new SPAN website and goal-planning app was created and tested. Three usability trials were conducted with (1) OT students, (2) youth with traumatic brain injury, and (3) young adult brain tumor survivors. Ratings of useful or higher were found. Computer or laptop navigation was easy, but it was harder to view and type on smartphones. Minor technical problems and the need for clearer instructions are being addressed in preparation for a larger SPAN intervention trial. Primary Author and Speaker: Gary Bedell

Facilitating Transitions to Adulthood in Pediatric Brain Tumor Patients: the Role of Neuropsychology.

Transition-age patients with history of a pediatric brain tumor are at significant risk for difficulties transitioning to adulthood. We review current transition models and the potential role of neuropsychology in the transition process for adolescent and young adult brain tumor survivors. Several recently developed healthcare transition models include consideration of patients' cognitive and functional capacities, yet currently available transition readiness tools are limited in scope and do not possess adequate normative data across pediatric medical populations. We explore the potential utility and added benefit of systematically incorporating neuropsychology in the transition process for pediatric brain tumor survivors. The literature supports increased evaluation and intervention targeted at psychosocial barriers to transition. Based on these findings, we propose a family-centered and multidisciplinary care model that promotes both medical and broader psychosocial transition processes. Neuropsychology is ideally suited to assess the wide-ranging areas encompassed in transition readiness and to facilitate the transition process.

Feasibility and acceptability of an online problem-solving therapy intervention for adolescent and young adult brain tumor survivors.

Feasibility and acceptability of an online problem-solving therapy intervention for adolescent and young adult brain tumor survivors.

Supplemental Material for Feasibility and Acceptability of an Online Problem-Solving Therapy Intervention for Adolescent and Young Adult Brain Tumor Survivors

Supplemental Material for Feasibility and Acceptability of an Online Problem-Solving Therapy Intervention for Adolescent and Young Adult Brain Tumor Survivors

Adolescent and Young Adult Brain Tumor Survivors Report Increased Anxiety Even Years After Successful Treatment for Relapse.

Among survivors of pediatric cancers, brain tumor survivors are comparatively at high risk for experiencing relapsed disease. However, little is known about how disease relapse affects long-term psychological functioning in this cohort. This study of 162 pediatric brain tumor survivors, now adolescents and young adults (ages 12-36), demonstrates that survivors who have experienced relapsed disease are at increased risk for symptoms of anxiety, even years after successful treatment for relapse. Results underscore the need for adolescent and young adult survivors, particularly those with a history of relapsed disease, to receive ongoing psychosocial assessment and intervention that is integrated with their oncology follow-up care.

Patterns of family management for adolescent and young adult brain tumor survivors.

Little is known about how families systemically incorporate the work of caring for adolescent and young adult (AYA) survivors of childhood brain tumors who often remain dependent on their families well into adulthood. The primary aim of this study was to develop a typology of family management (FM) patterns for AYA survivors. The secondary aims were to compare them with FM patterns previously described for children with chronic health conditions and to validate the patterns using quantitative and qualitative data. Guided by the Family Management Styles Framework, a sequential, mixed-methods design was used to gather quantitative data from 186 mothers (primary caregivers) and 134 AYA survivors. FM patterns (family focused; somewhat family focused; somewhat condition focused; and condition focused) were identified using cluster analysis of data from the Family Management Measure. FM patterns were found to be similar to those for children with chronic health physical conditions and were significantly related to maternal quality of life, survivor quality of life (health-related quality of life [self- and mother proxy report]), cancer-related variables (treatment intensity, medical late effects), and family functioning in theoretically meaningfully ways. Significant demographic characteristics included private insurance and AYA survivors' engagement in school or employment. Qualitative analysis of data from 45 interviews with mothers from the larger sample provided additional support for and elaborated descriptions of FM patterns. Identification of FM patterns moves the science of family caregiving forward by aggregating data into a conceptually based typology, thereby taking into account the complex intersection of the condition, the family, and condition management. (PsycINFO Database Record

Supplemental Material for Patterns of Family Management for Adolescent and Young Adult Brain Tumor Survivors

Supplemental Material for Patterns of Family Management for Adolescent and Young Adult Brain Tumor Survivors

Quality of Life Among Parents of Adolescent and Young Adult Brain Tumor Survivors.

We aimed to describe the quality of life (QOL) among parents of adolescent and young adult brain tumor survivors as well as parent, survivor, and diagnosis/treatment-related factors associated with adverse QOL. A cross-sectional study of 28 parents of adolescent and young adult brain tumor survivors (who were on average 10 y postdiagnosis) was used to assess QOL. Parent QOL was measured using the Patient-Reported Outcomes Measurement Information System Global Health measure. Factors associated with adverse parent QOL were explored using logistic regression including: parent, survivor, and diagnosis/treatment-related factors. Parent QOL was within the normal range; however, 40% scored below the clinical threshold of 0.5 SD below the mean for physical and mental health. Parent perceptions of greater family impact, survivor emotional/behavioral health problems, improved cognitive function, and recurrence were associated with adverse parent physical health. Parent anger/sorrow, uncertainty, survivor emotional/behavioral health problems, speech/language problems, and recurrence were associated with adverse parent mental health. Parental emotional resources and perceptions of improved survivor peer relationships were associated with greater parent physical and mental health. The impact of a brain tumor diagnosis and treatment on the QOL of parents may be significant. Interventions are needed to ensure that the needs of parents are met.

"She Was a Little Social Butterfly": A Qualitative Analysis of Parent Perception of Social Functioning in Adolescent and Young Adult Brain Tumor Survivors.

Psychosocial sequelae of diagnosis and treatment for childhood brain tumor survivors are significant, yet little is known about their impact on adolescent and young adult (AYA) brain tumor survivors. Interviews were conducted with parents of AYA brain tumor survivors with a focus on social functioning. Semistructured interviews were conducted with English- and Spanish-speaking parents of AYA brain tumor survivors ≥10 years of age who were >2 years postdiagnosis, and analyzed using emergent themes theoretically integrated with a social neuroscience model of social competence. Twenty parents representing 19 survivors with a survivor mean age 15.7 ± 3.3 years and 10.1 ± 4.8 years postdiagnosis were interviewed. Several themes relevant to the social neuroscience social competence model emerged. First, parents' perceptions of their children's impaired social functioning corroborated the model, particularly with regard to poor social adjustment, social withdrawal, impaired social information processing, and developmentally inappropriate peer communication. Second, ongoing physical and emotional sequelae of central nervous system insults were seen by parents as adversely affecting social functioning among survivors. Third, a disrupted family environment and ongoing parent psychosocial distress were experienced as salient features of daily life. We document that the aforementioned framework is useful for understanding the social impact of diagnosis and treatment on AYA brain tumor survivorship. Moreover, the framework highlights areas of intervention that may enhance social functioning for AYA brain tumor survivors.

The feasibility of psychosocial screening for adolescent and young adult brain tumor survivors: the value of self-report

Psychosocial screening is increasingly applied to childhood cancer survivors generally, but less so with pediatric brain tumor survivors despite their psychosocial risks. This study examined the utility and acceptability of psychological screening in pediatric brain tumor survivors. Eighty-four adolescents (age 12-18) completed the Beck Youth Inventory-II and 79 young adults (age 19-30) completed the Brief Symptom Inventory-18. Their scores were compared to clinician ratings on the global assessment of functioning following clinical interviews. Eighty-four percent of participants completed measures in <30min, 90% reported no associated distress, and 98% found measures easy to understand. Using established cut-off scores, 14 adolescents (17%) and 21 young adults (27%) were identified as clinical cases by self-report. Agreement with clinician report was generally low (kappa = .19, p = .077, adolescents; kappa = .34, p = .003, young adults), with clinicians tending to rate a higher proportion of both groups as having significant distress (24% in adolescents; 32% in young adults). Low self-concept scores in adolescents and deficits in social and vocational functioning in young adults contributed significantly to the discrepancies between self-report and clinician ratings. Pediatric brain tumor survivors are capable of completing self-report psychological measures without distress or burden. Self-report can be a valuable tool in the assessment of pediatric brain tumor survivors, particularly in adolescents, who may provide information not revealed in a clinical interview. However, self-report, should not be used as a "stand-alone" assessment because important areas of functioning may be minimized in survivors' reports. Utilizing self-report for psychosocial screening of adolescent and young adult brain tumor survivors may enhance clinical care and allow for better identification of survivors in need of psychological services.