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. 2022 Dec;31(12):2074-2085.
doi: 10.1002/pon.6028. Epub 2022 Sep 27.

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

Georgia K B Halkett  1   2 , Elizabeth Lobb  3   4   5 , Katrina Spilsbury  6 , Haryana Dhillon  7   8 , Anna K Nowak  9   10
Affiliations

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

Georgia K B Halkett et al. Psychooncology. 2022 Dec.

Abstract

Purpose: 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 distress over time. The highest unmet needs in people with HGG and high distress were disease specific changes in mental ability and physical side effects.

Conclusion: This study demonstrates people with HGG experience ongoing distress and highlights a need for continuous distress and unmet needs screening and referrals.

Keywords: brain tumours; high grade glioma; longitudinal study; patient distress; supportive care needs.

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Conflict of interest statement

The authors have no relevant financial or non‐financial interests to disclose.

Figures

FIGURE 1
FIGURE 1
Study participation
FIGURE 2
FIGURE 2
Number and percentage of participants reporting low, moderate, or severe distress at three and 6 months stratified by baseline distress category (start of chemoradiotherapy)
FIGURE 3
FIGURE 3
Range of the proportion of participants experiencing any brain cancer specific unmet needs from baseline to 6 months by distress trajectory group with indication of consistent increase (+), consistent decrease (−), or fluctuating proportions (∼) over time
FIGURE 4
FIGURE 4
Range of the proportion of participants experiencing moderate to high brain cancer specific unmet needs from baseline to 6 months by distress trajectory group with indication of consistent increase (+), consistent decrease (−), or fluctuating proportions (∼) over time
See this image and copyright information in PMC

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