Glioblastoma, a highly aggressive brain cancer, presents significant challenges in patient care, marked by a poor prognosis and a substantial decline in neurological function. Patients frequently endure considerable suffering from both the disease progression and the adverse effects of treatment. Integrating palliative care early in the oncology care pathway is widely recognized for its benefits; however, its utilization for glioblastoma patients remains notably low. This article explores a quality improvement (QI) initiative focused on implementing a simple, five-item palliative care screening tool in an outpatient neuro-oncology setting. The aim was to assess the practicality, effectiveness, and value of this tool in enhancing the identification and referral of glioblastoma patients who could benefit from palliative care services. This project demonstrates the potential of a concise screening tool to bridge the gap in palliative care access for this vulnerable patient population.
High-grade gliomas, particularly glioblastoma (World Health Organization [WHO] grade IV), are the most prevalent primary malignant tumors of the central nervous system. The grim reality for individuals diagnosed with glioblastoma is a median overall survival of just 12 to 15 months. Throughout their illness, patients face a progressive deterioration of neurological function, imposing a heavy burden on both themselves and their caregivers. The palliative care needs of glioblastoma patients are intricate, stemming from a complex interplay of symptoms including functional impairments, cognitive decline, and communication difficulties. Common symptoms as the disease advances include drowsiness, cognitive deficits, aphasia, motor weakness, seizures, and personality changes. Furthermore, treatments like chemotherapy and radiation therapy can introduce additional challenges such as nausea, vomiting, fatigue, and further cognitive decline.
Despite the evident and complex needs, palliative care is underutilized in the glioblastoma population. Research indicates that patients with high-grade gliomas often receive less palliative care compared to those with other cancers, despite experiencing a significant symptom burden. Several factors contribute to this disparity. Patients and families may mistakenly believe palliative care is solely for end-of-life situations. Healthcare providers might equate palliative care with hospice, fearing it diminishes hope. Crucially, a lack of clarity among healthcare providers regarding the appropriate criteria for palliative care referral presents a significant barrier.
A growing body of evidence underscores the advantages of integrating palliative care early in the management of advanced cancer. Early palliative care intervention has been linked to improved quality of life, reduced mood disturbances like depression and anxiety, and even decreased healthcare costs. While the benefits of early palliative care for advanced cancer patients are increasingly recognized, knowledge gaps persist among both patients and healthcare providers regarding its appropriate use and timing. The primary obstacle to palliative care access remains the lack of referrals from healthcare providers. Studies suggest that employing screening tools to identify patients in need of palliative care support can significantly increase timely referrals. One study demonstrated a substantial reduction in non-referral rates, from 68% to 16% within a four-month period, simply through the use of a screening tool.
Clinical guidelines from organizations like the American Society of Clinical Oncology (ASCO) and the National Comprehensive Cancer Network (NCCN) advocate for integrating palliative care resources into outpatient oncology programs, particularly for patients with high symptom burden. NCCN guidelines specifically recommend routine screening for palliative care referral for all advanced cancer patients. However, reports indicate that the adoption of these guidelines in practice remains limited, with many institutions uncertain about referral criteria and timing. Therefore, the implementation of standardized needs assessment tools is crucial to promote the role of palliative care in oncology. This quality improvement project sought to address this gap by implementing a palliative care screening tool to increase screening and referral rates for glioblastoma (WHO grade IV) patients in an outpatient neuro-oncology clinic.
Objectives
This project aimed to evaluate the feasibility, value, and effectiveness of implementing a palliative care screening tool for glioblastoma (WHO grade IV) patients returning for follow-up at the Preston Robert Tisch Brain Tumor Center (PRTBTC) at Duke Cancer Institute (DCI).
The project had three specific objectives:
- Feasibility: To determine the proportion of eligible glioblastoma patients screened for palliative care needs using the glioma palliative care screening tool during routine follow-up visits.
- Value: To assess the proportion of patients scoring 5 or higher on the screening tool who subsequently had a palliative care discussion with their healthcare provider.
- Effectiveness: To measure the proportion of patients referred to palliative care among those who had a palliative care referral discussion.
Design of the Five-Item Palliative Care Screening Tool Implementation
This quality improvement project was designed to assess the impact of a palliative care screening tool on outpatient palliative care screening and referrals for glioblastoma patients. The project underwent formal QI evaluation and was deemed exempt from institutional review board review.
A literature review was conducted to identify existing palliative care screening tools suitable for neuro-oncology patients. While no tool specifically designed for this population was found, a concise, five-item palliative care screening tool, developed for general outpatient oncology patients based on NCCN palliative care screening criteria, was identified. This tool, developed by Glare and colleagues, includes five screening items:
- Presence of metastatic or locally advanced cancer
- Functional status score (using Eastern Cooperative Oncology Group [ECOG] performance status)
- Presence of serious complications of advanced cancer associated with a poor prognosis (<12 months)
- Presence of serious comorbid diseases associated with poor prognosis
- Presence of palliative care problems
A total score of 5 or more on this tool is recommended as a threshold for palliative care referral.
This five-item screening tool was adapted for glioblastoma patients in consultation with the neuro-oncology team at the PRTBTC. Given that glioblastoma is inherently an advanced disease, “progressive disease at current visit” was used as the equivalent of “metastatic or locally advanced cancer.” The ECOG performance status in the original tool was converted to the Karnofsky Performance Status (KPS), which is standard at the PRTBTC. Examples were added to clarify “serious complications of cancer” and “comorbid disease associated with poor prognosis,” and these examples were further refined during the project implementation based on clinical experience.
A questionnaire was developed to collect patient demographics, screening scores, palliative care discussions, referral outcomes (to Duke palliative care or local oncology), and reasons for not discussing or referring to palliative care when indicated by the screening tool.
Prior to implementation, information sessions were held for clinical staff, including neuro-oncologists, nurse clinicians, advanced practice providers (APPs), certified medical assistants (CMAs), and clinic nurses, to introduce the QI project and the use of the screening tool and questionnaire.
During clinic visits, CMAs provided the glioma palliative care screening tool and provider questionnaire to APPs for eligible patients. APPs completed the screening during patient assessment, considering medical history and current exam findings. If the screening tool indicated a palliative care need (score ≥ 5), the APP discussed palliative care referral with the attending physician and the patient. Referrals were made upon agreement from both the attending physician and the patient. Local patients were referred to Duke palliative medicine, while out-of-state patients received recommendations for palliative care referral to their local oncologist. After screening and referral decisions, APPs completed the provider questionnaire.
Setting and Subjects
The QI project was conducted at the PRTBTC, a tertiary outpatient neuro-oncology clinic at Duke Cancer Institute in Durham, North Carolina. The clinic specializes in adult primary brain and spinal tumor patients.
Eligible participants included patients aged 18 years or older, diagnosed with WHO grade IV malignant glioma (glioblastoma or gliosarcoma), proficient in English, and returning to the PRTBTC for routine follow-up with a new brain MRI. Patients undergoing pretreatment evaluations, new patient evaluations, or those already referred to palliative care were excluded.
The key providers involved were 10 board-certified APPs (7 nurse practitioners, 3 physician assistants), along with physicians, fellows, residents, and medical students. The APPs collaborated closely with supervising neuro-oncologists and communicated with local oncology teams regarding patient care.
Measurements
The project employed descriptive analyses to evaluate the impact of the palliative care screening tool. The primary endpoint was the proportion of eligible patients screened for palliative care needs using the adapted screening tool during the 10-week implementation period. This was calculated by dividing the number of patients screened by the total number of eligible patients.
Data from the provider questionnaire was used to assess secondary endpoints:
- The proportion of screened patients who had a palliative care discussion (calculated from patients with a score ≥ 5).
- The proportion of patients referred to palliative care (among those who had a palliative care discussion).
- Referral rates included referrals to Duke palliative medicine and recommendations for local oncologist-based palliative care.
Results
During the 10-week implementation (September–December 2018), 530 patients were identified as eligible for screening. As shown in Figure 1, the screening tool was available to providers for 433 of these patients. An initial oversight in tool distribution by CMAs in the first 17 days meant 97 eligible patients did not receive the screening tool initially. Among the 433 patients for whom the tool was available, 294 (68%) were screened using the tool (Table 1).
Figure 1.
Figure 1Palliative care referral outcomes.
Table 1. Project Outcomes.
| Outcome | Estimate | 95% confidence interval |
|---|---|---|
| Proportion of eligible patients screened | 294/530 (56%) | 51%–60% |
| Proportion of eligible patients screened among those for whom the certified medical assistant provided the form to the APP | 294/433 (68%) | 64%–72% |
| Proportion of screened patients with score ≥ 5 | 27/294 (9%) | 5.9%–12.5% |
| Proportion of patients with score ≥ 5 who had a palliative care discussion | 17/27 (63%) | 42%–81% |
| Proportion of patients with score ≥ 5 who were referred to a palliative care consult | 12/27 (44%) | 25%–65% |
| Proportion of patients with referral among those with a palliative care discussion | 12/17 (71%) | 44%–90% |
The screened patient population was predominantly male (60%) and presented with a Karnofsky Performance Status (KPS) of 70% or higher in 47% of cases. Nearly half (45%) had a NCCN Distress Thermometer score of zero. A significant portion (53%) were between 46 and 65 years of age (Table 2).
Table 2. Patient Demographics.
| Gender |
|---|
| Male |
| Female |
| Unknown |
| Age |
| 26–35 |
| 36–45 |
| 46–55 |
| 56–65 |
| 66–75 |
| > 75 |
| Unknown |
| Karnofsky Performance Status |
| 90%–100% |
| 70%–80% |
| 50%–60% |
| 30%–40% |
| 10%–20% |
| NCCN Distress Thermometer score |
| 0 |
| 1 |
| 2 |
| 3 |
| 4 |
| 5 |
| 6 |
| 7 |
| 8 |
| 9 |
| 10 |
| Unknown |
Regarding feasibility (Aim 1), 56% of eligible patients were screened for palliative care needs using the glioma palliative care screening tool.
Assessing the value of the tool (Aim 2), 9% of screened patients (27 out of 294) scored 5 or higher, indicating a potential need for palliative care. Among these 27 patients, 63% (17) had a palliative care discussion. Reasons for not discussing palliative care in the remaining 10 patients included a focus on future treatment plans (5 patients), attending physician disagreement (3 patients), and unspecified reasons (2 patients).
For effectiveness (Aim 3), 71% (12 out of 17) of patients who had a palliative care discussion were referred to palliative care. Of these 12 referrals, 3 were to Duke palliative care, 8 were recommendations for local palliative care, and 1 lacked specific documentation. Among the 5 patients not referred, 4 declined referral, and 1 was referred to hospice.
APPs conducted the majority of screenings (89%), with fellows, residents, medical students, and one attending physician also participating.
Discussion
Patients with high-grade gliomas, particularly glioblastoma, face significant symptom burdens from both the disease and its treatment. Early integration of palliative care is essential for addressing these complex needs. Given the unique challenges in managing glioblastoma, proactive screening for palliative care referral is crucial.
Baseline data from 2018 indicated an average of six brain tumor patient referrals to Duke palliative care per 10-week period. A pilot study on early palliative care integration in glioblastoma showed approximately two referrals per 10 weeks. This QI project, using the five-item palliative care screening tool, resulted in 12 palliative care referrals over 10 weeks, with 56% of eligible patients screened. This demonstrates that implementing a palliative care screening tool in routine outpatient care is feasible, effectively raises awareness of palliative care needs, and translates to increased palliative care referrals.
Initial challenges with screening tool distribution by CMAs were overcome by APPs and clinical staff taking responsibility for distribution. Had the tool been consistently available for all eligible patients from the outset, the screening rate likely would have been higher. Integrating the screening tool into the electronic medical record (EMR) system could further improve accessibility and trigger automatic alerts for scores of 5 or higher, promoting sustained implementation.
This project highlighted the vital role of a multidisciplinary team. APPs, who frequently see patients in conjunction with attending physicians, were instrumental in screening 89% of patients and initiating palliative care discussions. This underscores the potential of APPs to champion palliative care integration within standard oncology practice by proactively screening for referral needs.
While an extensive search for a validated screening tool specifically for high-grade glioma patients yielded no results, the adapted five-item tool, based on a validated tool for general oncology patients, proved practical for this setting. A limitation is the lack of formal validation of the adapted glioma palliative care screening tool. However, the original tool has demonstrated validity in outpatient and inpatient oncology settings.
Despite identifying 27 patients needing palliative care based on the screening tool, 10 did not have a palliative care discussion. In half of these cases, providers prioritized treatment planning over palliative care discussions. Clinic workflow and time constraints can inadvertently minimize attention to palliative care needs. Exploring models that combine palliative care and oncology visits could enhance integration.
Even with referral recommendations, four patients declined palliative care, potentially due to misunderstandings about palliative care (confusing it with hospice), time limitations, or financial concerns. Further research is needed to determine the most effective and patient-centered models for early palliative care integration in glioma care, including addressing patient acceptance and preferences.
Conclusion
This quality improvement project demonstrates the feasibility of integrating a palliative care screening tool into routine outpatient neuro-oncology care. Utilizing the five-item palliative care screening tool effectively raises awareness of palliative care needs and increases referrals. Improving access to the tool, such as through EMR integration with automated alerts, can further enhance its use. Addressing provider attention to palliative care and patient acceptance of referrals are critical next steps to ensure comprehensive screening and timely palliative care access. Wider adoption of palliative care screening tools holds promise for facilitating earlier palliative care referral, ultimately leading to improved symptom management and enhanced quality of life for glioblastoma patients.
