Patients diagnosed with glioblastoma, a high-grade glioma, face a grim prognosis with limited overall survival and a significant decline in neurological function, compounded by the adverse effects of treatment. Despite the established advantages of integrating palliative care early in oncology treatment, its adoption remains limited for these patients. This quality improvement (QI) project aimed to evaluate the practicality, significance, and effectiveness of employing an adapted palliative care screening instrument to enhance the identification and referral of glioblastoma patients to outpatient palliative care services. This QI initiative was conducted over a 10-week period, during which a glioma-specific palliative care screening tool was developed and incorporated into routine outpatient consultations. Healthcare providers were mandated to utilize this tool during each patient encounter. The study focused on patients aged 18 and above, diagnosed with World Health Organization (WHO) grade IV glioma, who were returning to the neuro-oncology clinic for a scheduled brain MRI evaluation. The rates of screening, palliative care discussions, and subsequent referrals were meticulously assessed. Out of 530 eligible patients visiting the clinic over the 10-week duration, the screening tool was accessible for 433. Fifty-six percent (n = 294/530) of these patients underwent screening. Among those screened, nine percent (n = 27) were identified as potential candidates for palliative care referral, indicated by a score of 5 or higher on the screening tool. Among these 27 patients, 63% (n = 17) engaged in discussions about palliative care. Ultimately, 71% (n = 12) of patients who had palliative care discussions were successfully referred to a palliative care provider. The findings suggest that integrating a glioma palliative care screening tool into outpatient visits is a viable strategy to highlight palliative care needs and facilitate referrals to palliative care services.
High-grade gliomas, notably glioblastoma (World Health Organization [WHO] grade IV), represent the most prevalent primary malignant tumors of the central nervous system (Ostrom et al., 2017). Glioblastoma carries a median overall survival of just 12 to 15 months (Alcedo-Guardia, Labat, Blas-Boria, & Vivas-Mejia, 2016). Throughout their illness, patients endure substantial symptomatic neurological deterioration, placing a considerable burden on both themselves and their caregivers. The palliative care requirements of glioblastoma patients are intricate, stemming from a significant symptom burden encompassing functional, cognitive, and communication impairments. Typical symptoms experienced by glioblastoma patients as the disease progresses include drowsiness, cognitive dysfunction, aphasia, motor weakness, seizures, and personality alterations. Furthermore, patients often suffer from side effects of chemotherapy or radiation therapy, such as nausea, vomiting, fatigue, and cognitive decline (Walbert & Khan, 2014).
A comprehensive literature review by Walbert (2014) on palliative care, hospice care, and end-of-life care within neuro-oncology practices revealed that patients with high-grade gliomas often receive less palliative care compared to individuals with other cancer types, despite experiencing a high symptom burden. This underutilization of palliative care can be attributed to several factors: (1) patients and families frequently believe palliative care is only appropriate at the very end of life (Perrin & Kazanowski, 2015), (2) providers may mistakenly equate palliative care with hospice, fearing it diminishes hope (Hui et al., 2015), and (3) crucially, healthcare providers may lack awareness or have differing opinions regarding the criteria for palliative care referral.
A growing body of evidence underscores the value of integrating early palliative care into the management of advanced cancer patients. Patients receiving palliative care early in their disease trajectory have demonstrated improved quality of life, reduced mood disturbances (depression and anxiety), and decreased healthcare costs (Adelson et al., 2017; Davis, Temel, Balboni, & Glare, 2015; El-Jawahri et al., 2016; Grudzen et al., 2016; Nakajima & Abe, 2016; Salins, Ramanjulu, Patra, Deodhar, & Muckaden, 2016; Temel et al., 2016; Vanbutsele et al., 2018). Despite increasing recognition of the benefits of early palliative care for advanced cancer patients, literature reviews highlight a knowledge gap among both patients and healthcare providers concerning when and how palliative care should be utilized. The primary obstacle to palliative care access is the lack of referrals from healthcare providers (Kumar et al., 2012). Research suggests that employing screening tools to identify patients who would benefit from palliative care support can significantly increase timely referrals. A study by Begum (2013) indicated that the use of a screening tool reduced the proportion of patients not referred to palliative care from 68% to 16% within a 4-month period.
The American Society of Clinical Oncology (ASCO) Clinical Practice Guideline advocates for outpatient oncology programs to offer palliative care resources to cancer patients with significant physical and psychosocial symptom burden (Ferrell et al., 2017). Similarly, the National Comprehensive Cancer Network (NCCN) Guidelines recommend repeated screening of all advanced cancer patients for palliative care referral (Swarm & Dans, 2018). However, Albizu-Rivera and colleagues (2016) found that only 10% of NCCN member institutions utilize the NCCN Guidelines for palliative care screening in oncology patients, with the majority of respondents expressing uncertainty about referral criteria and timing. Adopting standardized needs assessments is crucial to promote the role of palliative care in oncology settings. This quality improvement (QI) project implemented a palliative care screening tool to increase screening and referrals to outpatient palliative care for glioblastoma (WHO grade IV) patients within a neuro-oncology outpatient 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 to the Preston Robert Tisch Brain Tumor Center (PRTBTC) at Duke Cancer Institute (DCI) for follow-up evaluations.
The primary objective was to assess the feasibility of implementing a palliative care screening tool by determining the proportion of eligible patients with WHO grade IV malignant glioma, returning to the PRTBTC for follow-up MRIs, who were screened for palliative care needs using the glioma palliative care screening tool.
The secondary objective was to evaluate the value of the screening tool by determining the proportion of patients, scoring 5 or higher on the screening tool, who engaged in discussions regarding palliative care.
The tertiary objective was to assess the effectiveness of the tool by determining the proportion of patients, who had a palliative care referral discussion, who were subsequently referred to palliative care.
DESIGN
This QI project was structured to investigate the feasibility, value, and effectiveness of utilizing a palliative care screening tool to improve outpatient palliative care screening and referrals for glioblastoma (WHO grade IV) patients. Formal evaluation using a QI checklist determined this project to be exempt from institutional review board oversight.
A literature review was conducted to identify a palliative care screening tool specifically designed for neuro-oncology patients. However, no such tool was found. A simplified palliative care screening tool (Glare, Semple, Stabler, & Saltz, 2011), originally developed for general outpatient oncology patients based on NCCN palliative care screening criteria, was identified. This tool encompasses five key screening items: (1) presence of metastatic or locally advanced cancer, (2) functional status score according to the Eastern Cooperative Oncology Group (ECOG) performance status, (3) presence of one or more serious complications of advanced cancer typically associated with a prognosis of fewer than 12 months, (4) presence of one or more serious comorbid diseases also indicative of poor prognosis, and (5) presence of palliative care problems. A total score of 5 or more is the recommended threshold for referral. This screening tool was adapted for brain tumor patients in consultation with the neuro-oncology team at the PRTBTC (Appendix A). Given that glioblastoma (WHO grade IV) is inherently an advanced disease, and extracranial metastases are exceedingly rare, neuro-oncology providers do not typically use “metastatic disease” as a descriptor. Therefore, “progressive disease at a current visit” was deemed equivalent to “metastatic or locally advanced cancer” (item 1 in Appendix A). For functional status (item 2), while the original tool used ECOG criteria (Glare et al., 2011), the PRTBTC utilizes the Karnofsky Performance Status (KPS). A straightforward conversion between ECOG and KPS was incorporated into the adapted tool. “Serious complications of cancer associated with a prognosis of fewer than 12 months” (item 3) was further clarified with the example of “metastatic disease to the spine.” This example was further refined on day 10 of the project to include “progression of disease more than twice” or “new multifocal disease.” For “comorbid disease associated with poor prognosis” (item 4), initial examples included moderate-to-severe congestive heart failure (CHF), stroke, dementia, renal disease, liver disease, pulmonary embolism, bowel perforation, cerebral edema, and obstructive hydrocephalus. On day 10, these examples were expanded to encompass a history of moderate-to-severe CHF, stroke, cognitive deficit, renal disease, liver disease, pulmonary embolism, bowel perforation, cerebral edema, obstructive hydrocephalus, cytopenia, or any new active problem requiring intervention or hospital admission.
A questionnaire (Appendix B) was designed to collect patient data including age, sex, diagnosis, palliative care discussion and referral status, and whether referrals were made to Duke palliative care or recommendations were given for local palliative care referrals. The questionnaire also included a question to document reasons for not having a palliative care discussion and/or not making a referral, when applicable.
Two weeks prior to project initiation, brief informational sessions about the QI project were conducted for clinical staff at the PRTBTC, including attending neuro-oncologists, nurse clinicians, and clinic nurses. Separate informational sessions were also held for each group of advanced practice providers (APPs) and certified medical assistants (CMAs) before project implementation.
CMAs provided the glioma palliative care screening tool (Appendix A) and provider questionnaire (Appendix B) to APPs assigned to see eligible patients. APPs assessed palliative care needs during patient examinations and from medical histories. If the screening tool indicated a need for referral (score ≥ 5), the APP discussed palliative care referral with the patient’s attending physician and the patient. Referrals were made only with the agreement of both the attending physician and the patient. Local patient referrals were directed to Duke palliative medicine. Since a significant proportion of PRTBTC patients reside out of state, recommendations for palliative care referral to local oncologist offices were made for non-local patients. Following screening and referral decisions, APPs completed the questionnaire (Appendix B).
SETTING/SUBJECTS
This QI project was conducted at the PRTBTC within the DCI, a tertiary outpatient neuro-oncology clinic situated in Durham, North Carolina. The PRTBTC provides care for adult patients with primary brain and spinal tumors.
The target patient group for this QI project comprised patients who were 18 years of age or older, diagnosed with WHO grade IV malignant glioma (glioblastoma or gliosarcoma), English-speaking, and returning to the PRTBTC for routine evaluation with a new brain MRI. Patients presenting for pretreatment evaluations, new patient evaluations, or those already referred to and engaged with palliative care were excluded.
Key providers involved in the project included 10 board-certified APPs (7 nurse practitioners and 3 physician assistants), with six APPs possessing over 5 years of clinical experience. PRTBTC APPs worked collaboratively with supervising attending neuro-oncologists and communicated critical care issues to local medical oncology teams. In addition to APPs, physicians, fellows, residents, and medical students also participated in screening and questionnaire completion.
MEASUREMENTS
Analyses for this QI project are descriptive. The primary endpoint, the proportion of eligible patients screened for palliative care needs using the palliative care screening tool among eligible patients with WHO grade IV malignant glioma returning to the PRTBTC for a follow-up MRI, was assessed throughout the 10-week implementation period. This was measured by counting the number of patients screened using the adapted screening tool out of the total number of eligible patients.
Data from the questionnaire (Appendix B) indicated whether palliative care referral discussions occurred. The project’s secondary endpoint, the proportion of screened patients who discussed palliative care referral, was measured by counting the number of patients who had a score of 5 or greater on the screening tool and subsequently engaged in palliative care referral discussions.
The tertiary objective, assessing effectiveness, was measured by determining the proportion of patients agreeing to palliative care referral among those who had a palliative care discussion. Referral rate was quantified by counting questionnaires indicating referrals to Duke palliative medicine or recommendations for local oncologist office referrals among screened patients scoring 5 or higher.
RESULTS
During the 10-week implementation period, spanning September to December 2018, 530 patients were identified as eligible for screening. Figure 1 illustrates the overall palliative care screening, discussion, and referral outcomes. Among the 530 eligible patients, the screening tool was provided to providers for 433 patients. In the initial 17-day period, CMAs did not distribute the screening tool for 97 eligible patients. Consequently, out of the 433 patients for whom the tool was available, 294 patients (68%) were screened using the tool (Table 1).
Figure 1. Palliative care referral outcomes.
Palliative 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% |
Screened patients were predominantly male (60%) and exhibited a KPS of 70% or higher (47%). Nearly half of the patients (n = 131, 45%) recorded an NCCN Distress Thermometer score of zero. Over half of the patients (n = 177, 53%) were aged between 46 and 65 years (Table 2).
Table 2. Patient Demographics.
| Gender | |
|---|---|
| Male | 177 (60%) |
| Female | 109 (37%) |
| Unknown | 8 (3%) |
| Age | |
| 18–25 | 18 (6%) |
| 26–35 | 39 (13%) |
| 36–45 | 49 (17%) |
| 46–55 | 84 (29%) |
| 56–65 | 71 (24%) |
| 66–75 | 21 (7%) |
| > 75 | 10 (4%) |
| Unknown | 2 (1%) |
| Karnofsky Performance Status | |
| 90%–100% | 133 (45%) |
| 70%–80% | 123 (42%) |
| 50%–60% | 35 (12%) |
| 30%–40% | 3 (1%) |
| 10%–20% | 0 (0%) |
| NCCN Distress Thermometer score | |
| 0 | 131 (45%) |
| 1 | 35 (12%) |
| 2 | 26 (9%) |
| 3 | 21 (7%) |
| 4 | 17 (6%) |
| 5 | 19 (6%) |
| 6 | 8 (3%) |
| 7 | 8 (3%) |
| 8 | 4 (1%) |
| 9 | 2 (1%) |
| 10 | 3 (1%) |
| Unknown | 20 (7%) |
Regarding the feasibility assessment of the palliative care screening tool and the study’s first aim, the proportion of eligible patients screened for palliative care needs using the glioma palliative care screening tool was 56% (294/530).
In evaluating the value of the palliative care screening tool, 27 (9%) of the 294 screened patients achieved a score of 5 or higher, indicating palliative care needs. The proportion of patients who engaged in palliative care discussions among those scoring 5 or higher was 63% (17/27). Among the 10 patients who did not have a palliative care referral discussion, five instances were attributed to a focus on future treatment plans, three to attending physician disagreement regarding palliative care discussions, and two lacked documented reasons.
The study’s final aim addressed the effectiveness of the palliative care screening tool implementation. The proportion of patients referred to palliative care among those who had a palliative care referral discussion was 71% (12/17). Of the 12 referred patients, three were referred to Duke palliative care, eight received recommendations for local oncologist office palliative care referrals, and one lacked medical record documentation specifying the referral location. Among the five patients not referred to palliative care, four declined the referral, and one was referred to hospice care.
The majority (89%) of patients (262/294) were screened by trained APPs. Other providers utilizing the screening tool included a fellow, residents, and medical students. One patient was also screened by an attending physician using the tool.
DISCUSSION
Patients with high-grade gliomas, including glioblastoma (WHO grade IV), experience significant neurological symptoms and adverse effects from cancer treatments. The benefits of integrating early palliative care with oncology care are well-established. Given the unique and complex symptomatic burden faced by high-grade glioma patients, timely screening for palliative care referral is paramount.
Provider referral data from fiscal year 2018 indicated an average of six brain tumor patients per 10-week period were referred to Duke palliative care. A pilot study on early palliative care integration for glioblastoma patients showed approximately two referrals to Duke palliative care per 10-week period. This QI project demonstrated a significant increase, with 12 patients referred to palliative care during the 10-week study period, and over half (56%; 294/530) of eligible patients being screened using the tool. This QI project effectively demonstrated that integrating a palliative care screening tool into routine clinical practice is feasible, can effectively highlight palliative care needs, and significantly increase referrals to palliative care services.
For 18% (97/530) of eligible patients, providers did not receive the screening tool from CMAs during the initial 17 days. Consequently, APPs and clinical staff members took over tool distribution. Subsequently, screening tools were appropriately administered to all eligible patients. Had the screening tool been distributed to all eligible patients from the outset, the screening proportion likely would have been even higher. Integrating the screening tool into the electronic medical record (EMR) system represents a potential solution to enhance accessibility. Increased accessibility, coupled with automated alerts triggered by scores of 5 or greater, could further encourage screening tool utilization and facilitate long-term implementation.
This QI project involved a multidisciplinary team approach. Given that APPs typically see patients in conjunction with attending physicians, the fact that 89% of patients (262/294) were screened and palliative care referral discussions were initiated by APPs underscores their pivotal role in integrating palliative care into standard oncology practice. This project highlights that APPs can be instrumental in initiating palliative care screening and referrals.
Extensive literature searches failed to identify a validated screening tool specifically developed for high-grade glioma or neuro-oncology patients. To ensure practicality within a busy clinic, a simplified screening tool (Glare et al., 2011) was carefully selected and adapted for high-grade glioma patients following consultation with the PRTBTC neuro-oncology team. A potential limitation of this project is the lack of formal validation for the adapted glioma palliative care screening tool. However, the original screening tool (Glare et al., 2011) was designed for outpatient cancer patients, and an inpatient version (Glare & Chow, 2015) has been validated.
Despite 27 patients meeting screening criteria for palliative care, ten did not have palliative care referral discussions. Providers for five of these ten patients cited a focus on discussing subsequent treatment plans and clinical issues over palliative care. Demands of clinical workload and time constraints can detract from attention to palliative care needs. Integrating palliative care visits with oncology care visits into a single appointment could potentially enhance the practical integration of palliative care within oncology settings.
Although the screening tool indicated referral needs and providers recommended palliative care, four patients declined referral. This could stem from patient misunderstanding of palliative care (perceiving it as hospice rather than symptom management), time constraints, or financial burdens associated with additional visits. An optimal model for early palliative care integration in glioma care remains to be established. Future research should investigate patient acceptance of palliative care to identify the most effective and efficient models for early integration within oncology care pathways.
CONCLUSION
This project effectively demonstrated the feasibility of integrating a palliative care screening tool into routine clinical care. Application of this 5 Item Palliative Care Screening Tool can successfully trigger attention to palliative care needs and increase referrals to palliative care services for glioblastoma patients. Enhancing accessibility to the glioma palliative care screening tool, such as through EMR integration with automated alerts for appropriate referrals, may further promote its use. Moreover, continued efforts to improve provider awareness of palliative care benefits and address patient acceptance of palliative care referrals are essential to comprehensively screen for palliative care needs and ensure timely referrals. Utilizing a palliative care screening tool holds significant promise for facilitating early palliative care referral and ultimately improving patient outcomes related to symptom management and overall quality of life in glioblastoma.
Appendix A. Glioma Palliative Care Screening Tool
| Screening items | Points | Patient points |
|---|---|---|
| Progressive MRI at current visit | 2 | |
| Functional status of patient (ECOG score/KPS score) | 0–4 | |
| 0: ECOG 0 = KPS 90%–100% | ||
| 1: ECOG 1 = KPS 70%–80% | ||
| 2: ECOG 2 = KPS 50%–60% | ||
| 3: ECOG 3 = KPS 30%–40% | ||
| 4: ECOG 4 = KPS 10%–20% | ||
| Any serious complication of cancer associated with a prognosis of | 1 | |
| Presence of one or more serious comorbid disease associated with poor prognosis (e.g., moderate-to-severe CHF, stroke, cognitive deficit, renal disease, liver disease, PE, bowel perforation, cerebral edema, obstructive hydrocephalus, cytopenia or NEW active problem requiring intervention or admission) | 1 | |
| Presence of palliative care problem | 1 | |
| • Uncontrolled symptoms (e.g., GI symptoms, headaches, fatigue, rash) | ||
| • Moderate-to-severe distress (NCCN Distress Thermometer score of 4 or higher) | ||
| • Patient/family concerns regarding course of disease and decision making | ||
| • Patient/family requests palliative care consult | ||
| • Team needs assistance with decision making | ||
| Total | 0–13 | |
| Refer the patient to palliative care when the score ≥ 5 | ||
| If the screening tool is not used, please write the reason below __________________________________________________________________________________________________ |
Note. ECOG = Eastern Cooperative Oncology Group; KPS = Karnofsky Performance Status; CHF = congestive heart failure; PE = pulmonary embolism; GI = gastrointestinal; NCCN = National Comprehensive Cancer Network. Adapted from Glare et al. (2011).
Appendix B. Provider Questionnaire
| Day # | __________ |
|---|---|
| Age | __________ |
| Diagnosis | __________________________________ |
| Sex | M/F |
| NCCN Distress score | __________ |
| Are you an APP? | □ Yes □ No: Fellow/Resident/Med student |
| Screening score ≥ 5? | |
| □ Yes □ No | |
| Palliative care discussion with the patient done? | |
| □ Yes □ No | |
| Referral made? | |
| □ Yes □ No | |
| If yes, referral made to | |
| □ Duke palliative care | |
| □ Recommended to patient’s local oncologist for palliative care referral | |
| If screening score ≥ 5, and discussion did NOT take place and/or referral NOT made, why? | |
| □ Patient refused | |
| □ Provider did not agree: Attending/APP (please circle one) | |
| □ Other: ___________________________________________________________________________________________ |
Footnotes
The authors have no conflicts of interest to disclose.
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