NCOG-39. EXPLORING PATIENT REPORTED OUTCOMES (PROS) ACROSS ETHNORACIAL GROUPS IN PRIMARY BRAIN TUMOR (PBT) PATIENTS: DIFFERENCES IN THE ILLNESS EXPERIENCE

2021 ◽  
Vol 23 (Supplement_6) ◽  
pp. vi160-vi160
Author(s):  
Amanda King ◽  
Julianie De La Cruz Minyety ◽  
Alvina Acquaye ◽  
Nicole Briceno ◽  
Anna Choi ◽  
...  
Keyword(s):  
Brain Tumor ◽  
Cognitive Function ◽  
Symptom Burden ◽  
Past Research ◽  
Self Report ◽  
Illness Experience ◽  
High Grade ◽  
Targeted Interventions ◽  
Patient Reported ◽  
Race Ethnicity

Abstract SIGNIFICANCE AND AIMS Past research in PBT patients has demonstrated that minorities may have a survival advantage compared to Whites for high-grade tumors, though little is known about their illness experience given their underrepresentation in clinical trials. This study explored differences in PROs across race-ethnicity within a large PBT cohort describing associated burden and risk for minority populations where data is scarce. METHODS Demographic, clinical characteristics, MDASI-Brain Tumor, PROMIS Depression and Anxiety Short-Forms, and Neuro-QoL Cognitive Function were collected from the most recent timepoint for PBT patients enrolled on the Natural History Study. Descriptive statistics, one-way ANOVA, and linear regression were used to report results. RESULTS The sample included 562 PBT patients (58% male, median age = 50 [18-85]) comprised of 79% White, 6% African American (AA), 10% Hispanic, and 5% Asian patients per self-report. Most patients had a high-grade glioma (60%), with 28% on active treatment and 44% with good KPS (90-100). Among the most commonly reported moderate-severe symptoms were fatigue ( > 40% in all groups), difficulty remembering (30-40% of Asians, AAs, and Whites), and disturbed sleep (44% in Asians, 29% in Hispanics), while hemiparesis was common only for AA patients (37%). There were no differences between groups with respect to symptom burden and interference, mood disturbance, or cognitive function. Race/ethnicity group was not predictive of overall symptom burden or interference, but for all groups, higher KPS predicted lower symptom and interference scores (p < .001 and p = .004, respectively). CONCLUSION While some symptoms were common across ethnoracial groups, there were differences in symptom patterns, suggesting there may be other factors driving their illness experience. Future exploration of socioeconomic and cultural factors that might contribute to the symptom burden of minorities is warranted, which may allow development of targeted interventions to improve clinical outcomes in these groups.

scholarly journals QOLP-19. FINANCIAL TOXICITY AND DISTRESS DURING THE COVID-19 PANDEMIC IN PEOPLE LIVING WITH PRIMARY BRAIN TUMORS

2021 ◽  
Vol 23 (Supplement_6) ◽  
pp. vi187-vi187
Author(s):  
Heather Leeper ◽  
Elizabeth Vera ◽  
Alvina Acquaye ◽  
Nicole Briceno ◽  
Anna Choi ◽  
...  
Keyword(s):  
Brain Tumor ◽  
Family Income ◽  
Functional Limitations ◽  
Symptom Burden ◽  
High Grade Glioma ◽  
Primary Brain Tumor ◽  
High Grade ◽  
Strongly Correlated ◽  
Financial Toxicity ◽  
Patient Reported

Abstract Primary brain tumor (PBT) patients experience high symptom burden and functional limitations, which may be impacted by the economic strain and mood disturbance during the COVID-19 pandemic. We assessed financial toxicity and associated patient reported outcomes (PROs) after one year of lockdown in a cohort of PBT patients. Patient and disease characteristics and PROs including FACIT-COST, MDASI-Brain Tumor, PROMIS-Anxiety/Depression short forms, and EQ-5D-3L were collected from 7/2020 to 5/2021 from participants in our Natural History Study. Descriptive statistics, Pearson correlations, and independent samples t-tests evaluated PRO relationships. The cohort included 112 PBT patients: 57% male, 87% white, mean age = 47 (range 25 – 80). Majority were married (65%), completed ≥ 4-year college degree (73%), earned annual family income ≥ $50,000 (68%) and living with a high-grade glioma (72%) complicated by recurrence (51%). Using FACIT-COST, 56% reported some financial hardship due to illness with a mean FACIT-COST of 28.3 (SD = 11.3, range: 0 - 44). Half of patients reported feeling moderately to extremely anxious or depressed. Non-Whites and Hispanics as well as those not currently working reported worse financial toxicity compared to White non-Hispanics and individuals currently working (21.4 vs 29.8 and 25.7 vs 30.4, respectively). Worse financial toxicity scores strongly correlated with worse overall symptom burden (r = -0.55) and interference (r = -0.42), worse anxiety (r = -0.39) and depression scores (r = -0.44), and worse overall HRQOL scores (r = –0.33)[all p< .01]. This is the first report of FACIT-COST in PBT patients to our knowledge and demonstrates that non-White individuals living with high grade glioma who are not currently working due to their tumor reported worse financial toxicity which was strongly correlated with higher symptom burden and interference with lower HRQOL. Future studies to assess financial toxicity longitudinally and post-pandemic using the FACIT-COST are needed.

scholarly journals NCOG-70. RELIABILITY AND VALIDITY OF A NEW SELF-REPORT INDEX OF COGNITIVE CONCERNS IN BRAIN TUMOR PATIENTS

2020 ◽  
Vol 22 (Supplement_2) ◽  
pp. ii145-ii145
Author(s):  
Giuliana Zarrella ◽  
Alice Perez ◽  
Jorg Dietrich ◽  
Michael Parsons
Keyword(s):  
Brain Tumor ◽  
Verbal Memory ◽  
Cognitive Abilities ◽  
Convergent Validity ◽  
Discriminant Validity ◽  
Reliability And Validity ◽  
Cognitive Testing ◽  
Self Report ◽  
Measurement Information ◽  
Patient Reported

Abstract INTRODUCTION Subjective cognitive dysfunction is an important outcome measure in neuro-oncology and may provide additional information beyond performance-based neuropsychological testing. The Functional Assessment of Cancer Therapy-Brain (FACT-Br) is a frequently used quality of life (QoL) measure that includes indices of physical, emotional, social, and neurologic aspects of disease, but does not measure cognitive concerns. This study seeks to develop and validate an index of self-reported cognition derived from existing items on the FACT-Br. METHODS 145 patients (Mage=51.08, Medu=15.63) with heterogeneous brain tumor diagnoses completed neuropsychological evaluation including cognitive testing and self-report measures. Nine FACT-Br items regarding cognition were combined to form the Cognitive Index (CI). Reliability of the CI was measured with Cronbach’s alpha. Concurrent validity was assessed by correlating the CI with the Patient-Reported Outcomes Measurement Information System (PROMIS) Cognitive Abilities-8 or PROMIS Cognitive Concerns-8. Discriminant validity was assessed by correlation of the CI with other FACT-Br indices and the Beck Depression and Anxiety Inventories (BDI, BAI). RESULTS Internal consistency within the CI was high (Cronbach’s a 0.864). The CI correlated strongly with the PROMIS-Abilities (r =.680; p< 0.001) and PROMIS-Concerns (r=.780; p< 0.001) indicating high convergent validity. Moderate correlations were observed between the CI and the physical and functional subscales of the FACT (r=.453 and .555), whereas correlations with the social and emotional functioning subscales were weaker (r=.381 and .325). The FACT-Br-CI correlated strongly with BDI (r=-.622) and more weakly with the BAI (r=-.344). Consistent with prior literature, the CI showed modest correlations with neuropsychological measures, including verbal memory encoding (r=.300), verbal fluency (r=.252) and a composite measure of cognition (r=.249; all p’s< .01). CONCLUSIONS The FACT-Br-CI is a reliable and valid measure of self-reported cognition. Studies that include the FACT-Br could be retrospectively analyzed to assess self-reported cognitive outcomes, enriching the information gained from prior research.

scholarly journals QOLP-10. PATIENT-REPORTED OUTCOMES DURING TREATMENT FOR GLIOBLASTOMA: SYMPTOM BURDEN AND ASSOCIATED IMPACT ON DAILY LIFE

2019 ◽  
Vol 21 (Supplement_6) ◽  
pp. vi199-vi199
Author(s):  
Meghan Hultman ◽  
Megan Tipps ◽  
Minda Liu ◽  
Nilanjana Banerji ◽  
Patricia Bruns ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Brain Tumor ◽  
Daily Life ◽  
Symptom Burden ◽  
Clinical Information ◽  
Symptom Experience ◽  
Surgical Interventions ◽  
Patient Reported ◽  
Late Treatment

Abstract INTRODUCTION Glioblastoma is the most common primary malignant brain tumor, with an annual incidence of 3–4 new cases per 100,000 people. Despite advances in chemotherapy, radiotherapy, and surgical interventions, prognosis remains poor. Aims of treatment for life-limiting diagnoses should extend beyond increasing survival time to include palliation of symptoms and promotion of quality of life. Here we describe patient-reported symptoms both early and late in the glioblastoma treatment trajectory, as well as their associated interference with daily life. METHODS Fifty patients with newly diagnosed glioblastoma were recruited between September 2015-March 2018. Demographic and clinical information was collected from medical records. Patients also completed the brain tumor-specific MD Anderson Symptom Inventory (MDASI-BT) approximately every 8 weeks from completion of chemoradiation through cessation of active disease treatment. Both individual and categories of related symptoms reported in the initial two (early treatment) and final two (late treatment) MDASI-BT assessments were examined for symptom frequency, severity, and relationships between symptom severity and interference with daily life. Patients still receiving treatment or who completed < 4 total MDASI-BT assessments were excluded from the analysis. RESULTS The most commonly reported symptoms were often, but not always, consistent with the symptoms rated as most severe. This was true for individual symptoms as well as categories of symptoms. The most common/severe symptoms also changed from early to late treatment. Overall symptom burden was positively correlated with symptom interference in daily life (r=0.67, p< 0.0001). Regression analysis identified different symptoms as predictors of interference in early as opposed to late treatment, and these predictors did not necessarily align with the most common/severe symptoms. CONCLUSION Symptom experience for patients with glioblastoma is complex and dynamic. Attention to symptom trajectories for patients with glioblastoma may direct approaches to assessment, early identification, and symptom management, thus promoting better quality of life.

Abstract 17004: Using mHealth to Capture Patient-Reported Sexual Satisfaction in Heart Failure

Circulation ◽  
2020 ◽  
Vol 142 (Suppl_3) ◽  
Author(s):  
Brittany N Taylor ◽  
Meghan Reading Turchioe ◽  
Parag Goyal ◽  
Ruth M Masterson Creber
Keyword(s):  
Heart Failure ◽  
Sexual Satisfaction ◽  
Medical Center ◽  
Academic Medical Center ◽  
Symptom Burden ◽  
Self Report ◽  
Patient Comfort ◽  
Measurement Information ◽  
Chi Square ◽  
Patient Reported

Introduction: Over 60% of heart failure (HF) patients have reported problems with sexual satisfaction, which is a major reason for medication non-adherence. While many patients are reticent to verbally self-report impaired sexual satisfaction, mobile health (mHealth) technology may improve patient comfort in reporting these symptoms. We aimed to evaluate the feasibility of HF patients using mHealth to self-report sexual satisfaction by comparing responders to non-responders and evaluating symptom burden. Methods: We prospectively recruited HF patients from inpatient and outpatient cardiology clinics at an urban academic medical center from October 2016 to January 2017. Patients completed Patient Reported Outcomes Measurement Information System (PROMIS ® ) questionnaires via an mHealth application, mi.Symptoms . The specific outcomes of interest were fatigue- and pain-related impairment of sexual satisfaction, due to the prevalence of those symptoms in HF. Data were analyzed using descriptive statistics and Chi-square tests to evaluate differences between responders and non-responders. Results: The mean age of participants (n=168) was 59 years (±12.5); 37% were female; 37% were Latino; 32% were Black, 32% White, and 36% Other Race . Few significant differences in demographic characteristics of responders and non-responders were noted ( Table ). Of the 117 participants (69.6%) who responded regarding fatigue, 59 (50.4%) indicated that fatigue affected sexual satisfaction “quite a bit” or “very much.” Of the 114 participants (67.9%) who responded regarding pain, 44 (38.6%) indicated that pain affected sexual satisfaction “quite a bit” or “very much.” Conclusion: This study showed that mHealth can be a feasible way to collect sexual satisfaction data with fairly high response rates and few differences between responders and non-responders. Participants’ reported high burden of impairment underscores the importance of measuring this symptom.

Reliability and Validity of a Novel Cognitive Self-Assessment Tool for Patients with Cancer

2021 ◽  
Author(s):  
Giuliana V Zarrella ◽  
Alice Perez ◽  
Jorg Dietrich ◽  
Michael W Parsons
Keyword(s):  
Cognitive Function ◽  
Internal Consistency ◽  
Concurrent Validity ◽  
Assessment Tool ◽  
Clinical Care ◽  
Self Report ◽  
Measurement Information ◽  
Subjective Cognitive Function ◽  
Patient Reported ◽  
The Impact

Abstract Background Subjective cognitive function is an important outcome measure in oncology. The Functional Assessment of Cancer Therapy-Brain (FACT-Br) is a quality of life (QoL) measure that includes indices of physical, emotional, social, and neurologic aspects of disease, but does not measure cognitive function. This study seeks to validate a novel index of cognition derived from the FACT-Br. Methods Patients with heterogeneous cancer diagnoses (N=214) completed neuropsychological evaluation and self-report measures. Nine FACT-Br items regarding cognition were combined to form the FACT-Br-Cognitive Index (CI). Reliability was evaluated by exploratory factor analysis and internal consistency. Concurrent validity was assessed by correlating FACT-Br-CI with the Patient-Reported Outcomes Measurement Information System (PROMIS) Cognitive-8 scales. Discriminant validity was assessed by correlating FACT-Br-CI with other FACT-Br indices and the Beck Depression and Anxiety Inventories (BDI, BAI). Exploratory analyses evaluated the impact of cognitive performance and disease variables on FACT-Br-CI. Results The FACT-Br-CI consisted of a single factor that demonstrated high internal consistency (α=.867) and strong concurrent validity, correlating strongly with PROMIS-Cognitive-8 scales (r=.675-.782). The relationship between the FACT-Br-CI and other FACT subscales ranged from moderate to strong (r=.372-.601), as did correlations with measures of depression (BDI, r=-.621) and anxiety (BAI, r=-.450). Modest correlations were observed with neuropsychological measures (r’s=.249-.300). Conclusions The FACT-Br-CI is a reliable and valid measure of self-reported cognition. Studies that included the FACT-Br could be retrospectively analyzed to assess subjective cognitive outcomes, enriching the information from prior research. Integration of the FACT-Br-CI in routine clinical care may be an efficient method of monitoring cognition.

scholarly journals Acupuncture and reflexology for patients undergoing chemotherapy: an observational study

2021 ◽  
Author(s):  
Suzanne Jane Grant ◽  
Gretel Spiegel ◽  
Amanda BRAND ◽  
Ki Kyung KWON ◽  
Gillian HELLER ◽  
...  
Keyword(s):  
Observational Study ◽  
Financial Distress ◽  
Symptom Burden ◽  
Self Report ◽  
Future Research ◽  
Control Group ◽  
Patient Reported ◽  
Edmonton Symptom Assessment Scale ◽  
Clinically Significant ◽  
Multiple Symptoms

Abstract Purpose Around three quarters of individuals undergoing chemotherapy self-report multiple symptoms. There is clinical trial evidence of effectiveness for acupuncture for commonly experienced symptoms, and emerging evidence for reflexology, but little is known about the effects of these therapies on multiple symptoms when implemented in a real world setting during active chemotherapy treatment. Methods This was a single-arm observational study of participants receiving reflexology and/or acupuncture while attending chemotherapy. Participants received a 20 minute reflexology treatment or a 20 minute acupuncture treatment or a combination of both. Patient reported outcome measures were administered before and after the treatment using the Edmonton Symptom Assessment Scale (ESAS). Results During the study period, 330 unique participants with cancer received acupuncture and/or reflexology treatments. Participants had, on average, 5.3 symptoms each which they reported as moderate to severe (≥4/10) using the ESAS at baseline. Following treatment, participants reported 3.2 symptoms as moderate to severe. The symptom change for all participant encounters receiving any therapy was statistically significant for all symptoms, and clinically significant (a reduction of more than 1) for all symptoms except financial distress, appetite and memory. Clinically significant levels of global distress (<3) were reduced in 72% of all participants receiving either therapy. No adverse events were recorded. Conclusions The results indicate that acupuncture and reflexology administered alongside chemotherapy may reduce patient reported symptom burden and patient global symptom related distress. Future research would include an active control group, and consider confounding factors such as chemotherapy stage and medication.

scholarly journals QOLP-33. ACCEPTABILITY RANDOMIZED CONTROLLED TRIAL A COUPLES-BASED MIND-BODY INTERVENTION FOR PATIENTS WITH HIGH GRADE GLIOMA AND THEIR PARTNERS

2019 ◽  
Vol 21 (Supplement_6) ◽  
pp. vi205-vi205
Author(s):  
Kathrin Milbury ◽  
Shiao- Pei Weathers ◽  
Sania Durrani ◽  
Yisheng Li ◽  
Cindy Carmack ◽  
...  
Keyword(s):  
Intervention Study ◽  
Controlled Trial ◽  
Eligible Patient ◽  
Symptom Burden ◽  
High Grade Glioma ◽  
Emotional Disclosure ◽  
Self Report ◽  
High Grade ◽  
Randomized Controlled ◽  
Couples Coping

Abstract BACKGROUND Given the incurable nature, short survival and high symptom burden of high grade glioma (HGG), patients and their partners are at risk of experiencing psychological and existential/spiritual distress. To address these concerns, we developed a dyadic intervention integrating meditation training with emotional disclosure exercises. The primary aim was to examine feasibility and acceptability of the intervention study procedures. METHODS Dyads completed baseline self-report measures and were randomized to a couple-based mind-body (CBMB) or a waitlist control (WLC) group. Couples in the CBMB groups attended 4 weekly (60 min each) therapist-led sessions that were delivered via FaceTime. The CBMB program focused on cultivating mindfulness, compassion, gratitude and purpose. All groups were reassessed, 1 month and 3 months after baseline. RESULTS We approached 60 eligible patient-partner dyads of which 37 (62%) consented and 18 were randomized to the CBMB and 16 to the WLC group. Of those randomized, 23 dyads (67%) completed all assessments (n= 12 in CBMB; n=11 in WLC). Attrition was due to patients’ death (n=3), symptom burden (n=5) or passive withdrawal (n=3). Patients (57% male; mean age=57 years) and partners’ (59% female; mean age=54 years) attended a mean of 3.17 sessions (SD=1.2) with 83% attending at least 2 sessions. All dyads in the CBMB group reported the intervention as beneficial and useful and would recommend this program to other couples. Of note, 60% of couples would have preferred in-person delivery and 95% of patients but only 33% of partners stated that a dyadic intervention is their preference. CONCLUSION It seems to be feasible, acceptable and possibly efficacious to deliver a dyadic intervention via FaceTime to couples coping with HGG. Although both members of the dyad reported to have benefited, dyadic delivery appears to be less desirable for partners.

scholarly journals Living with a Central Nervous System (CNS) Tumor: Findings on Long-Term Survivorship from the NIH Natural History Study

2021 ◽  
Author(s):  
James L Rogers ◽  
Elizabeth Vera ◽  
Alvina Acquaye ◽  
Nicole Briceno ◽  
Varna Jammula ◽  
...  
Keyword(s):  
Brain Tumor ◽  
Spinal Cord Tumor ◽  
Symptom Burden ◽  
Tumor Grade ◽  
Molecular Characteristics ◽  
Cns Tumor ◽  
Patient Reported ◽  
Symptom Trajectory ◽  
Anxiety Depression

Abstract Background Primary CNS tumors are often associated with high symptom burden and a poor prognosis from the time of diagnosis. The purpose of this study is to describe patient-reported outcomes (PRO) data from long-term survivors (LTS; ≥5-year survival post-diagnosis). Methods Clinical/treatment/molecular characteristics and PROs (symptom burden/interference (MDASI-BT/SP), perceived cognition (Neuro-QOL), anxiety/depression (PROMIS), and general health status (EQ-5D-3L)) were collected on 248 adult LTS between 9/2016-8/2019. Descriptive statistics and regression analysis were used to report results. Results Participants had a median age of 47 years (19-82) and were primarily White (83%) males (51%) with high-grade tumors (59%) and few mutations. Forty-two percent of the 222 brain tumor LTS reported no moderate-to-severe symptoms while 45% reported three or more; most common symptoms were fatigue (40%), difficulty remembering (29%), and drowsiness (28%). Among spine tumor LTS (n=42), nearly half reported moderate-to-severe weakness, pain, fatigue, and numbness/tingling, with 72% experiencing activity-related interference. Severe anxiety, depression, and cognitive symptoms were reported in up to 23% of the sample. Brain tumor LTS at higher risk for severe symptoms were more likely to be young, unemployed, and have poor KPS, while high symptom-risk spinal cord tumor LTS had poor KPS and received any tumor treatment. Conclusions Findings indicate LTS fall into distinct cohorts with no significant symptoms or very high symptom burden, regardless of tumor grade or mutational profile. These LTS data demonstrate the need for survivorship care programs and future studies to explore the symptom trajectory of all CNS tumor patients for prevention and early interventions.

Patient-reported outcomes (PROs) in older adults with gastrointestinal (GI) cancer undergoing surgery.

2020 ◽  
Vol 38 (15_suppl) ◽  
pp. e24032-e24032
Author(s):  
Helen Perry Knight ◽  
Carolyn L. Qian ◽  
Emilia R. Kaslow-Zieve ◽  
Chinenye C. Azoba ◽  
Cristina R. Ferrone ◽  
...  
Keyword(s):  
Older Adults ◽  
Physical Function ◽  
Surgical Outcomes ◽  
Psychological Symptom ◽  
Symptom Burden ◽  
Assessment System ◽  
Self Report ◽  
Depression Symptoms ◽  
Gi Cancer ◽  
Patient Reported

e24032 Background: Older adults with GI cancer often experience poor surgical outcomes, yet little is known about their PROs, such as physical function, quality of life (QOL), and physical and psychological symptom burden. Methods: As part of a randomized trial of perioperative geriatric care, we prospectively enrolled older adults with GI cancer planning to undergo surgical resection. We asked patients preoperatively to self-report their physical function (ability to perform activities of daily living [ADLs] and instrumental ADLs [IADLs], higher scores indicate better functioning), QOL (EORTC QLQ-C30, higher scores indicate better QOL), symptom burden (Edmonton Symptom Assessment System [ESAS], higher scores indicate more severe symptoms, scores > 3 considered moderate/severe [mod/sev]), and depression symptoms (Geriatric Depression Scale [GDS], higher scores indicate more severe symptoms, scores > 4 represent a positive screen for depression). We used regression models to identify patient characteristics associated with these PROs. We also explored relationships among PROs and surgical outcomes (receiving planned surgery, postoperative readmissions, and survival). Results: We enrolled 160 of 221 (72.4%) patients approached. A minority of patients were independent in all ADLs (5.2%) and IADLs (47.7%). Patients reported an average of 2.56 mod/sev ESAS symptoms, and 27.7% screened positive for depression, with 53.1% reporting at least one comorbidity. The number of comorbidities was significantly associated with impaired ADLs (B = -0.63, P < .01) and lower QOL (EORTC: B = -2.74, P = .03). For surgical outcomes, patients with better physical function were more likely to receive their planned surgery (ADLs: OR = 1.21, P = .02; IADLS: OR = 1.30, P = .03). Higher QOL correlated with greater odds of receiving planned surgery (EORTC: OR = 1.03, P = .06), but this did not reach statistical significance. A higher number of mod/sev ESAS symptoms was associated with greater postoperative readmission risk within 90 days of surgery (HR = 1.13, P = .03). Better physical function was associated with better postoperative survival (ADLs: HR = 0.87, P = .02; IADLs: HR = 0.73, P < .01), and higher depression scores correlated with worse survival (GDS: HR = 1.13, P = .02). Conclusions: Older adults with GI cancer often have baseline functional limitations and a high physical and psychological symptom burden, all of which are associated with worse surgical outcomes. Future work should study whether addressing preoperative PROs could improve older patients’ surgical outcomes. Clinical trial information: NCT02810652 .

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