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

Abstract

We aimed to describe the quality of life (QOL) among parents of adolescent and young adult (AYA) 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 AYA brain tumor survivors (who were on average 10 years post-diagnosis) 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.

Câncer infantil e impactos emocionais para a família: Uma revisão da literatura

“…Vivenciar uma doença grave, como o câncer infantil, desperta uma cascata de emoções, especialmente as negativas (Hildenbrand et al, 2011;Fortier et al, 2013;Popp et al, 2015;Cox, 2016;D'urso et al, 2016;Buchbinder et al, 2017;Doumit & Khoury, 2017;Moreira-Dias & Silva, 2018;Kostak et al, 2019;Das et al, 2019;Peterson et al, 2019;Rensen et al, 2019a;Rensen et al, 2019b;Schoors et al, 2019;Hooghe et al, 2020;Lazar & Musek, 2020.). Entre essas se destacaram, principalmente, o medo como o mais relevante (38%; n=14), seguido de irritabilidade (24%; n=9), ansiedade, incerteza e tristeza (esses três últimos apresentaram igual porcentagem, 19%; n=7).…”

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

“…The insult-related risk and resilience factors were identified in a corresponding quantitative analysis (Buchbinder et al, 2015). The present qualitative analysis shows that parents directly associated many cancer- and treatment-related physical sequelae to social functioning.…”

“…Of particular note, the racial and ethnic heterogeneity of our sample, which is reflective of the sociodemographics of the surrounding community in Orange County, California, provides a unique opportunity to characterize a diverse range of experiences of families affected by the survivor’s experience. The themes that emerged from this study and associated analyses (Buchbinder et al, 2015) provide an important starting point for the validation of a conceptual framework which has been proposed in the context of survivorship research and clinical care as it relates to social competence. Moreover, these emergent themes provide insight into many of the moderating factors that impact the social competence of survivors.…”

Attitudes and Preferences Toward a Hypothetical Trial of an Internet-Administered Psychological Intervention for Parents of Children Treated for Cancer: Web-Based Survey

“…However, a number of negative impacts of living with childhood cancer persist long term, for both parents [2] and childhood cancer survivors [3,4]. In the case of parents, negative impacts include financial difficulties [5,6], uncertainty regarding future prognosis [7], and poor quality of life [8]. Furthermore, a considerable proportion of parents report elevated levels of long-term psychological distress [9-11].…”