Brain cancer patients' levels of distress and supportive care needs over time

Abstract

This study aimed to describe patient self-reported distress over time and how this was associated with wellbeing, and supportive care needs over a 6-month period from commencing chemoradiotherapy for high grade glioma (HGG). Methods:In this prospective cohort study, participants completed surveys at three time points: before chemoradiotherapy, at 3 and 6 months. These included Distress Thermometer, Functional Assessment of Cancer/Brain Cancer Treatment-general (Fact-G/FACT-BR), Supportive Care Needs Scale (SF-34) and Brain Tumour Specific subscale. Patient survival time was also collected. Group-based trajectory modelling was performed. Multinominal logistic regression assessed variables associated with different distress trajectory groups.Results: One hundred and sixteen participants completed assessments at baseline, 89 participants at 3 and 64 at 6 months. Four distress trajectory groups were identified; consistent low distress (18%), low to high distress (38%), high-to low distress (24%) and consistent high distress (19%). Younger participants tended to report decreased distress over time, whereas older participants reported consistently high distress.High distress trajectory participants had less education, lower physical wellbeing, more unmet needs, but higher functional wellbeing compared to the low to high distress trajectory. The number of unmet needs paralleled the patterns of distressThis is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.

Mapping the Supportive Care Needs of Adult Survivors of Childhood Cancer at a Comprehensive Cancer Center in the Middle East

“…Previous reports suggested similar findings in adults and AYA groups [34][35][36][37]. This relationship, marginally significant on conventional levels, might be suggestive of a transition point where adult survivors of childhood cancer start to face increased difficulties navigating healthcare systems and require more information about their health and care.…”

“…The findings from this study reveal a statistically significant and independent correlation between the diagnosis of brain tumor malignancies and a heightened psychological needs score. This result adds to the existing literature by elucidating the unique psychological burden faced by patients diagnosed with brain tumor malignancies [35,36] and suggesting that these patients may face unique psychological challenges, potentially related to their diagnosis, prognosis, or the burden of treatment.…”

Mapping the supportive care needs and quality of life of adult survivors of childhood cancer at a comprehensive cancer center in the Middle East

“…The findings from this study reveal a statistically significant and independent correlation between the diagnosis of brain tumor malignancies and a heightened psychological needs score. This result adds to the existing literature by elucidating the unique psychological burden faced by patients diagnosed with brain tumor malignancies 41,42 and suggesting that these patients may face unique psychological challenges, potentially related to their tumor site and its direct impact on brain functions affecting emotions and cognition, coupled with the uncertainty and severity of the prognosis, and the complexity and invasiveness of treatments. With regards to the age factor, the present study illuminates a significant relationship between age (22 years and older at the time of data collection) and increased healthcare system and information needs among adult survivors of childhood cancer.…”

Access to psychosocial support for people with brain tumor and family members: Healthcare professional perspectives

“…Such effects compromise individuals' independence and social participation and place considerable strain on family relationships 8,9 . High rates of psychological distress have been reported in PwBT (22%–48%) 10–13 and family caregivers (26%–62%) 14–17 …”

“…8 Such effects compromise individuals' independence and social participation and place considerable strain on family relationships. 8,9 High rates of psychological distress have been reported in PwBT (22%-48%) [10][11][12][13] and family caregivers (26%-62%). [14][15][16][17] Supportive care in cancer [18][19][20] and brain tumor 21,22 refers to approaches, interventions, and services aiming to meet individual and family members' information, emotional, spiritual, social, or practical support needs across the disease trajectory.…”