Edited by: Suzanne Kathleen Chambers, Griffith University, Australia
Reviewed by: David D. Eisenstat, University of Alberta, Canada; Vikki Elizabeth Knott, Menzies School of Health Research, Australia; Addie Cameron Wootten, Australian Prostate Cancer Research, Australia
Specialty section: This article was submitted to Neuro-Oncology, a section of the journal Frontiers in Oncology
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This study aimed to assess psychological distress (PD) as scored by the Distress Thermometer (DT) in adult primary brain tumor patients and caregivers (CGs) in a clinic setting and ascertain if any high-risk subgroups for PD exist.
From May 2012 to August 2013,
At diagnosis and first recurrence, 37.5 and 75.0% (respectively) of patients had DT scores above the cutoff for distress. At diagnosis, 78.1% of CGs met caseness criteria for distress. All CGs at recurrence met distress criterion. Patients with high-grade glioma had significantly higher scores than those with a benign tumor. For patients at diagnosis, non English speaking participants did not report significantly higher DT scores than English speaking participants.
Psychological distress is particularly elevated in CGs and in patients with high-grade glioma at diagnosis. Effective PD screening, triage, and referral by skilled care coordinators are vital to enable timely needs assessment, psychological support, and effective intervention.
Patients with primary brain tumors (PBT) experience a myriad of complex physical, emotional, cognitive needs (
Due to the high emotional sequelae of having a PBT (
Only a few studies have published serial or longitudinal DT data in PBT populations; however, assessment was acquired at pre-defined chronological time points such as baseline, and six monthly (
It is widely acknowledged that the impact and burden on caregivers of brain tumor patients is significant (
It is notable that even in subgroups of PBT survivors with more favorable outcomes such as pituitary tumors (
The complexity and scope of needs experienced by brain tumor patients and their caregivers requires a coordinated response from healthcare services and providers. In Australia, a cancer care coordinator is a position focused specifically on improving the patient journey. The care coordination role is designed to incorporate the critical functions of assessment and evaluation of clinical and supportive care needs and liaising with multidisciplinary teams (MDTs) to achieve timely and high quality care (
This study aimed to assess the psychological distress of PBT patients and caregivers, as measured by the DT, in a clinic setting. The second aim was to ascertain if any high risk subgroups for psychological distress exist, for example, caregivers and those of non English speaking background (NESB).
The study population comprised PBT patients who were either newly diagnosed or who were experiencing first tumor recurrence. Likewise, as a separate group, caregivers of PBT patients with either malignant or benign tumors were assessed and underwent DT screening from the period of May 2012 to August 2013. PBT categories included HGG, LGG, and benign brain tumors (BBTs), the most common of which included meningioma and pituitary tumors.
The NOCC in South Western Sydney Local Health District (LHD), serving a population of almost one million people, is a one full-time equivalent position that encompassed the care of all primary malignant and benign brain and spinal tumor patients diagnosed across three main teaching hospitals in the LHD. New cases and referrals were identified at MDT meetings held every 2 weeks where all new and recurrent PBT cases were discussed with a consensus management plan recommended.
Ethical approval to undertake the study was provided by South Western Sydney Area Health Service Human Research Ethics Committee. The NOCC conducted a screening assessment with each participant using the DT tool for psychological distress screening. DT screening was performed around the time of initial PBT diagnosis or at the time of first tumor recurrence. Likewise, DT screening was undertaken in caregivers of PBT patients either at initial diagnosis or first recurrence. DT screening for non English speaking patients was administered in the presence of a hospital-based interpreter where available or alternatively an English speaking caregiver. The majority of DT screening assessments were performed with the NOCC face-to-face in an oncology outpatient setting, or alternatively by phone, especially if patients were too unwell to attend clinic or had other logistical challenges.
The DT, a measure (
The DT has traditionally been designed for and utilized in cancer patients only (
Patients and/or caregivers with a DT score ≥4 were referred by the NOCC to relevant psycho-oncology, Allied Health or community services, in keeping with documented and accepted clinical practice guidelines for psychological distress management in oncology (
Selected patient demographic data including age and country of origin, English speaking versus non English speaking background, as well as clinical data including the PBT diagnosis, nature/timing of relevant treatments, and date of first (but not subsequent) tumor recurrence were collected.
It is widely acknowledged that there are many differing definitions for CALD groups. Although the Australian Bureau of Statistics (
The oncology electronic medical record, Mosaiq®, was used as a platform to collect and extract relevant clinical information concerning all DT scores from patients and caregivers. Once extracted from Mosaiq®, descriptive statistics were generated for all variables.
Results have been ordered according to four independent participant groups: patients at diagnosis, patients at recurrence, caregivers at diagnosis, and caregivers at recurrence. Descriptive and frequency data were generated for DT scores. Next, for patients at diagnosis, an independent samples
In total, 190 DT scores were collected. Of these, 25 patients and 11 caregivers had completed the DT at more than one time point. In these cases, only the first instance of DT completion was retained for analysis. Data from a total of 154 DT scores remained. DT scores were collected from a varied neuro-oncology cohort that comprised HGG, LGG, and BBT patients, as categorized by the international WHO 2007 classification of brain tumors (
Of the total number of DT assessments, 30.5% (47/154) were performed in NESB participants. Table
Patient |
Caregiver |
|||
---|---|---|---|---|
Diagnosis ( |
Recurrence ( |
Diagnosis ( |
Recurrence ( |
|
Mean, SD | 3.15 ± 2.20 | 5.42 ± 3.09 | 5.34 ± 1.89 | 7.64 ± 1.50 |
Range | 0–8 | 1–10 | 2–8 | 5–10 |
39 (40.6) | 8 (66.7) | 22 (68.8) | 11 (78.6) | |
Mean, SD | 4.03 ± 2.36 | 5.13 ± 2.98 | 5.86 ± 1.81 | 7.64 ± 1.29 |
Range | 0–8 | 1–9 | 3–8 | 5–9 |
8 (8.3) | 1 (8.3) | 4 (12.5) | 1 (7.1) | |
Mean, SD | 2.25 ± 1.28 | 2.00 | 4.25 ± 1.71 | 8.00 |
Range | 0–4 | – | 2–6 | – |
49 (51.0) | 3 (25.0) | 6 (18.8) | 2 (14.3) | |
Mean, SD | 2.59 ± 1.97 | 7.33 ± 3.06 | 4.17 ± 1.72 | 7.50 ± 3.54 |
Range | 0–8 | 4–10 | 2–7 | 5–10 |
69 (71.9) | 9 (75.0) | 19 (59.4) | 10 (71.4) | |
Mean, SD | 3.03 ± 2.26 | 5.11 ± 2.67 | 5.53 ± 1.87 | 7.40 ± 1.43 |
Range | 0–8 | 1–9 | 2–8 | 5–9 |
27 (28.1) | 3 (25.0) | 13 (40.6) | 4 (28.6) | |
Mean, SD | 3.44 ± 2.06 | 6.33 ± 4.73 | 5.08 ± 1.98 | 8.25 ± 1.71 |
Range | 0–7 | 1–10 | 3–8 | 6–10 |
A total of 96 DT scores were collected from patients at diagnosis, comprising 40.6% (39/96) with a diagnosis of HGG, 8.3% (8/96) with LGG, and 51.0 (49/96) with BBT. The highest mean DT scores were those with HGG tumors, followed by BBT and then LGG. For patients at diagnosis, 28.1% (27/96) were from NESB participants. DT scores were similar among NESB participants and those from an English speaking background (Table
An independent samples
Twelve patients at recurrence completed the DT. Of these, 66% (8/12) had a diagnosis of HGG, 8.3% (1/12) had LGG, and 25.0% (3/12) had BBT. Those with a diagnosis of BBT had the highest scores on the DT. Similar to patients at diagnosis, 25.0% (3/12) of patients at recurrence were from an NESB; however, scores on the DT were slightly elevated in comparison with those from an English speaking background. The majority of patients at recurrence met caseness criteria using the DT (75.0%, 9/12).
A total of 32 caregivers at diagnosis completed the DT. These comprised 68.8% (22/32) supporting someone with HGG, 12.5% (4/32) with LGG, and 18.8% (6/32) with BBT. The highest DT scores were for those with a diagnosis of HGG. There was a high rate of caregivers at diagnosis from an NESB (40.6%, 13/32), and they had slightly higher DT scores than those from an English speaking background (Table
Finally, DT scores were collected from 14 caregivers at recurrence. These were composed of 78.6% (11/14) supporting someone with HGG, 7.1% (1/14) LGG, and 14.3% (2/14) BBT. Scores on the DT were high among all tumor gradings for caregivers at recurrence, although the small group numbers did not allow for further comparison. Just under 30% of caregivers at recurrence were from an NESB (28.6%, 4/14) with similar mean scores on the DT (Table
Primary brain tumor patients have complex supportive care needs, and caregiver burden is high (
In the current study, 37.5% of all newly diagnosed patients in the current population met caseness criteria for psychological distress using the DT. This is comparable to other published literature where, using the same cutoff value, caseness ranged from 28% in newly diagnosed patients with glioblastoma with mean distress score of 2.15 (SD = 2.66) (
The findings of the current study confirm that levels of psychological distress as measured by the DT are high in patients with PBT. In patients overall, the DT score a mean of 3.15 (SD, 2.20) at initial diagnosis and a mean of 6.49 (SD, 2.61) at first tumor recurrence. In comparison, distress was higher in caregivers overall, with mean DT score at diagnosis of 5.34 (SD, 1.89) and 8.2 (SD, 1.47) in caregivers assessed at first recurrence.
The results presented here also highlight that psychological distress was particularly elevated in patients with HGG compared with low grade and benign tumor groups overall. Such a finding is intuitive, given the propensity for relatively rapid tumor recurrence and progressive functional decline, and is supported by other studies with similar conclusions (
There are a number of published studies that have attempted to describe the longitudinal patterns of psychological distress and/or mood disorder. Rooney et al. (
The longitudinal time course of psychological distress and its relationship to other mood-related symptoms remains to be clarified. Kangas et al. (
To our knowledge, the present study has reported DT findings in one of the largest cohorts of non English speaking neuro-oncology populations. Despite this, the current study did not find significant differences in DT scores between non English speaking and English speaking groups. It is appreciated that cultural diversity is a much more holistic concept than spoken language alone. Kayser et al. (
Findings from the current study substantiate existing studies reporting that PBT caregivers experience significantly elevated psychological distress (
Petruzzi et al. (
It is therefore relevant to consider potential reasons why caregivers might experience higher levels of psychological distress than patients at the time of diagnosis and at recurrence. Although clinical disclosure of tumor recurrence would always ideally occur in the presence of both the patient and their caregiver/s, it is possible that due to altered recall, insight, or changes in memory and other cognitive processes, the patient is not able to retain all the information and management plans disclosed. In practical terms, it is also not uncommon for caregivers to intentionally seek out additional prognostic information from the treating healthcare team in another confidential forum. Caregivers sometimes prefer to shield the patient from exchanges where poor prognostic news is relayed. Another possible contributing factor to distress is that caregivers may be faced with the additional decisions regarding palliative care options, increasing symptom (physical, cognitive) burden and financial stress.
The results presented here have a number of implications for clinical care of adults with PBT. Firstly, given the elevated levels of psychological distress in this cohort of patients and caregivers, it is imperative that they undergo systematic and routine psychological distress screening. Distress screening is considered a fundamental component of a holistic model for psychological services, which should contribute to the development of a treatment plan and appropriate and timely referrals and thus effective interventions (
Due to the projected trajectory of tumor recurrence in HGG patients, such screening, triage, and referral systems need to incorporate repeat screening over time for patients and caregivers at relevant points in the illness trajectory (i.e., diagnosis, recurrence, and the terminal phase). A population of PBT patients and their caregivers would be a potentially ideal group in which to adopt a tiered approach to psychological interventions, as outlined by Hutchison et al. (
This then leads to the discussion of the workforce that could provide such care for this particular group of patients and caregivers. In Australia and New Zealand, the majority of cancer care coordinators come from a specialist nurse or allied health professional background (
A neuro-oncology-specific care coordinator is well positioned to facilitate symptom and needs assessment, psychological support and referrals or intervention throughout the care continuum, and particularly so at predictable time points along the care journey where patients and caregivers are likely to experience higher distress levels. Due to the complexity, this role necessitates an experienced health practitioner familiar with the symptomatology, needs, and journey of a brain tumor patient. It is important that patient and caregiver needs are anticipated, proactively screened for and detected early, to ensure that timely intervention can occur. Furthermore, as many Australian cancer services will not routinely collect nor screen cases such as benign brain tumor patients (as their data are not typically collected by cancer registries), a neuro-oncology service should ideally have mechanisms to support this specific subgroup of PBT patients and their caregivers with a longer survivorship trajectory.
As most cancer services will not have the benefit of a dedicated, neuro-oncology-specific care coordinator, alternate models of service delivery will rely more fully on psycho-oncology staff and/or a programmatic system-wide approach for distress screening (
There were several limitations of the current study. Firstly, DT data beyond the first tumor recurrence were not captured, and thus it is possible that patients and/or caregivers could have experienced even higher psychological distress levels during the terminal phase of care. Secondly, not all NESB participants and not all caregivers were able to be assessed – hence, it is unclear to what extent the caregiver sample and NESB sample were representative of the broader population. It is also acknowledged that the caregiver group was relatively small and thus results should ideally be verified in a larger sample. In addition, a notable proportion of benign PBT caregivers were not accessible for assessment due to the fact that benign PBT patients often attended clinical consultations alone.
Finally, it was not possible to compare the level of psychological distress and caseness between the four subgroups due to the differing composition of these groups. Rather, the current study was largely descriptive in summarizing DT data for four different groups in a clinical setting.
Finally, future research directions could include an investigation of the impact of screening for psychological distress at various time points upon the workflow of a cancer care coordinator. It would also be interesting to compare distress levels in patients and caregivers during phases in which there is evidence of disease stability, to better understand the support that is needed.
This study demonstrates the prevalence of elevated psychological distress in a neuro-oncology population of patients at diagnosis and at first recurrence and also in caregivers. The groups exhibiting the highest distress levels included patients with HGG, patients with disease recurrence, and caregivers. It is thus imperative that both patients and caregivers have access to timely, systematic care coordination and needs assessment as well as a skilled and knowledgeable healthcare team who can provide effective intervention and support across the care trajectory.
The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.