QOLP-12. ILLNESS UNDERSTANDING AND PERCEPTIONS ABOUT PROGNOSIS IN PATIENTS WITH MALIGNANT GLIOMAS AND THEIR CAREGIVERS

2021 ◽  
Vol 23 (Supplement_6) ◽  
pp. vi185-vi185
Author(s):  
John Rhee ◽  
Michelle Mesa ◽  
Emilia Kaslow-Zieve ◽  
Lara Traeger ◽  
Areej El-Jawahri ◽  
...  

Abstract BACKGROUND Malignant gliomas (MG) are incurable tumors with limited survival. Prognostic awareness is essential for informed decision making, but patients’ and caregivers’ perceptions about their illness and prognosis are not well understood. METHODS We conducted a prospective, single-institution study in patients with newly diagnosed MG and their caregivers, following the outpatient visit in which their neuro-oncologist disclosed pathology results and discussed treatment options. Participants (patients and caregivers) completed the Prognosis and Treatment Perceptions Questionnaire to assess information preferences, treatment goals and prognostic understanding. RESULTS Of patients approached, 82% (14/17) were eligible and enrolled in the study. The majority of patients were male (9/14, 64%), median age 60 years (range 26-76) and had a glioblastoma (11/14, 79%). Most caregivers were female (8/11, 73%) and married to the patient (7/11, 64%). The majority of patients said their cancer was curable (10/13, 77%, one patient did not answer), while only 3/11 caregivers (27%) said the patient’s cancer was curable. Furthermore, 7/13 patients (54%) and 8/11 caregivers (73%) reported that their oncologist said their cancer was not curable, and the remainder (6/13 patients, 46% and 3/11 caregivers, 27%) said the oncologist “did not say” whether it was curable. Most patients (10/14, 71%) and caregivers (8/11, 73%) expressed a tendency to focus on the best-case scenario in response to information from their oncology team about their cancer. CONCLUSION Although most patients with MG and their caregivers acknowledged being told that their cancer was incurable, the majority of patients reported that their cancer was curable. Patients and caregivers often reported focusing on the best-case scenario regarding their cancer. Further investigation is warranted to explore strategies to support patients and caregivers learning about their incurable cancer.

2018 ◽  
Vol 36 (34_suppl) ◽  
pp. 33-33
Author(s):  
Sophia Landay ◽  
Maya V. Anand ◽  
Katharine M. Quain ◽  
Areej El-Jawahri ◽  
Joseph Greer ◽  
...  

33 Background: Malignant gliomas (MG) are rapidly progressive, incurable tumors. Patients with glioblastoma, the most common MG, have a median survival of approximately 14 months when treated aggressively. Despite this poor prognosis, data is lacking on patients’ and caregivers’ (CGs’) understanding of patients’ prognosis and treatment goals and their communication preferences. We assessed prognostic awareness (PA) in patients with MG and their CGs three months following diagnosis. Methods: We conducted a prospective study in patients with newly diagnosed MG and their CGs. At three months post-diagnosis, we administered to patients and CGs the Prognosis and Treatment Perceptions Questionnaire, which assesses illness understanding, goals of treatment, and likelihood of cure. Results: At three months after diagnosis, 82.9% (68/82) of patients and 81.3% (52/64) of CGs reported that knowing prognosis is “extremely” or “very” important, yet only 42.6% (35/82) of patients and 60.9% (39/64) of CGs reported accurate PA, defined as responses of “unlikely,” “very unlikely,” or “no” chance of cure. 46.3% (38/82) of patients and 46.9% (30/64) of CGs reported that their oncologist’s primary goal was to “extend life as long as possible,” while 25.6% (21/82) of patients and 10.9% (7/64) of CGs stated that their oncologist’s goal was to cure their cancer. Patients’ primary goal was most frequently “to cure my cancer” [40.2% (33/82)], while CGs most often presumed that their loved ones’ treatment goal was to “extend life as long as possible” [43.8% (28/64)]. Conclusions: Patients with MG and their CGs report that PA is important, but most patients, and to a lesser degree their CGs, have inaccurate PA. Additionally, patients’ treatment goals differ from CGs’ perceptions of patients’ goals and oncologists’ presumed goals. Patients’ primary goal is often curative, while CGs frequently presume that their loved one’s goal is to prolong life without aiming for cure. Patients and CGs most often presume that their oncologists are primarily aiming to extend survival rather than cure their disease. Further investigation of interventions to improve conversations about prognosis among patients with MG, their CGs and their oncologists is warranted.


2020 ◽  
Vol 7 (5) ◽  
pp. 490-497
Author(s):  
Deborah A Forst ◽  
Kit Quain ◽  
Sophia L Landay ◽  
Maya Anand ◽  
Emilia Kaslow-Zieve ◽  
...  

Abstract Background Patients with malignant gliomas have a poor prognosis. However, little is known about patients’ and caregivers’ understanding of the prognosis and the primary treatment goal. Methods We conducted a prospective study in patients with newly diagnosed malignant gliomas (N = 72) and their caregivers (N = 55). At 12 weeks after diagnosis, we administered the Prognosis and Treatment Perceptions Questionnaire to assess understanding of prognosis and the Hospital Anxiety and Depression Scale to evaluate mood. We used multivariable regression analyses to explore associations between prognostic understanding and mood and McNemar tests to compare prognostic perceptions among patient-caregiver dyads (N = 48). Results A total of 87.1% (61/70) of patients and 79.6% (43/54) of caregivers reported that it was “very” or “extremely” important to know about the patient’s prognosis. The majority of patients (72.7%, [48/66]) reported that their cancer was curable. Patients who reported that their illness was incurable had greater depressive symptoms (B = 3.01, 95% CI, 0.89-5.14, P = .01). There was no association between caregivers’ prognostic understanding and mood. Among patient-caregiver dyads, patients were more likely than caregivers to report that their primary treatment goal was cure (43.8% [21/48] vs 25.0% [12/48], P = .04) and that the oncologist’s primary goal was cure (29.2% [14/48] vs 8.3% [4/48], P = .02). Conclusions Patients with malignant gliomas frequently hold inaccurate perceptions of the prognosis and treatment goal. Although caregivers more often report an accurate assessment of these metrics, many still report an overly optimistic perception of prognosis. Interventions are needed to enhance prognostic communication and to help patients cope with the associated distress.


2015 ◽  
Vol 51 ◽  
pp. S208
Author(s):  
S. Alsirafy ◽  
R. Radwan ◽  
R. Fawzy ◽  
W. El-Sherief ◽  
H. Abd El-Aal ◽  
...  

Author(s):  
Robin Mathews ◽  
Peter Shrader ◽  
Vladimir Demyaneko ◽  
Vincent Miller ◽  
Laura Webb ◽  
...  

Objectives: Patients vary in the degree to which they understand and engage in their health care. We hypothesized that a personalized patient health education tool will promote patient communication and align patient and provider treatment goals in follow-up visits in order to optimize guideline adherence, including evidence-based therapy use and cardiovascular risk factor control, after an acute myocardial infarction (AMI). Methods: We developed a personalized patient education tool that summarized each patient’s status at discharge of secondary prevention risk factors (blood pressure (BP), low density lipoprotein cholesterol (LDL-C) and glycemic control), medication use (aspirin, beta blocker, ACE inhibitor/ARB, statin, P2Y 12 inhibitor), and outpatient treatment goals. Patients were randomized 1:1 to usual care vs. receipt of the education tool within 2 weeks post-discharge (before the outpatient visit). We compared secondary prevention medication use, cardiovascular risk factor control, and awareness of treatment goals between randomized groups at 6 months post-discharge. Results: Among 192 enrolled AMI patients, the median age was 60 years, 42% female, and 35% African American; demographic and clinical characteristics were well balanced between randomized groups. We noted high rates of secondary prevention therapy use at 6 months (Table). By 6 months post-discharge, mean systolic BP decreased by 10 mmHg with 80% of patients <140/90 mmHg, and mean LDL-C decreased by 13 mg/dl with 64% of patients under 100mg/dl. Overall, 36% of patients participated in cardiac rehabilitation. We observed no significant differences between randomized groups in any of these outcomes. Only 9% of patients who received the education tool brought it to their outpatient visit for discussion. Conclusion: Though secondary prevention medication use remains reasonably high at 6 months, achievement of secondary prevention health goals remains suboptimal after a myocardial infarction. Few patients utilized the health tool in discussions with outpatient providers during their follow-up visit which likely explains the lack of outcomes differences between randomized groups. Further work is needed to find effective interventions to engage patients and promote sustained behavioral modification for secondary prevention.


2021 ◽  
Author(s):  
Akira Sato ◽  
Keisuke Matsubayashi ◽  
Toshitaka Morishima ◽  
Kayo Nakata ◽  
Koji Kawakami ◽  
...  

Abstract Background: Cancer survivors are frequently excluded from clinical research, resulting in their omission from the development of many cancer treatment strategies. Quantifying the prevalence of prior cancer in newly diagnosed cancer patients can inform research and clinical practice. This study aimed to describe the prevalence, characteristics, and trends of prior cancer in newly diagnosed cancer patients in Japan. Methods: Using Osaka Cancer Registry data, we examined the prevalence, characteristics, and temporal trends of prior cancer in patients who received new diagnoses of lung, stomach, colorectal, female breast, cervical, and corpus uterine cancer between 2004 and 2015. Site-specific prior cancers were examined for a maximum of 15 years before the new cancer was diagnosed. Temporal trends were evaluated using the Cochran-Armitage trend test. Results: Among 275,720 newly diagnosed cancer patients, 21,784 (7.9%) had prior cancer. The prevalence of prior cancer ranged from 3.3% (breast cancer) to 11.1% (lung cancer). In both sexes, the age-adjusted prevalence of prior cancer had increased in recent years (P values for trend < 0.001), especially in newly diagnosed lung cancer patients. The proportion of smoking-related prior cancers exceeded 50% in patients with newly diagnosed lung, stomach, colorectal, breast, and cervical cancer. Conclusions: The prevalence of prior cancer in newly diagnosed cancer patients is relatively high, and has increased in recent years. Our findings suggest that a deeper understanding of the prevalence and characteristics of prior cancer in cancer patients is needed to promote more inclusive clinical research and support the expansion of treatment options.


2021 ◽  
Vol 9 (9) ◽  
pp. e003032
Author(s):  
James Harber ◽  
Tamihiro Kamata ◽  
Catrin Pritchard ◽  
Dean Fennell

Malignant pleural mesothelioma (MPM) is an incurable cancer with a dismal prognosis and few effective treatment options. Nonetheless, recent positive phase III trial results for immune checkpoint blockade (ICB) in MPM herald a new dawn in the fight to advance effective treatments for this cancer. Tumor mutation burden (TMB) has been widely reported to predict ICB in other cancers, but MPM is considered a low-TMB tumor. Similarly, tumor programmed death-ligand 1 (PD-L1) expression has not been proven predictive in phase III clinical trials in MPM. Consequently, the precise mechanisms that determine response to immunotherapy in this cancer remain unknown. The present review therefore aimed to synthesize our current understanding of the tumor immune microenvironment in MPM and reflects on how specific cellular features might impact immunotherapy responses or lead to resistance. This approach will inform stratified approaches to therapy and advance immunotherapy combinations in MPM to improve clinical outcomes further.


2012 ◽  
Vol 35 (1) ◽  
pp. 20 ◽  
Author(s):  
Nuri Karadurmus ◽  
Serkan Tapan ◽  
Mustafa Cakar ◽  
Ilkin Naharci ◽  
Turgay Celik ◽  
...  

Purpose: To determine circulating levels of the soluble TNF-like weak inducer of apoptosis (sTWEAK)and its association with demographic and biochemical parameters in a young group of patients with newly diagnosed and never treated hypertension. Methods: A total of 51 patients (mean age 21.7 ±1.4 years, body mass index (BMI) 24.5 ±1.6 kg/m2) with primary untreated hypertension, and 37 age- and BMI-matched healthy controls (mean age 22.5 ± 1.9 years, BMI 24.7 ± 1.5 kg/m2) were studied. Serums TWEAK and plasma asymmetrical dimethyl arginine (ADMA) levels were measured by EIA. Results: In patients and controls, mean systolic blood pressure (SBP) and diastolic blood pressure (DBP) were 149.8±5.65/93.4±3.4 mmHg and 124.2±6.4/78.24±5.5 mmHg, respectively. Serum sTWEAK levels were lower in the patient group (882.6±228.9 μmol/L vs. 1060.2±231.7μmol/L, p=0.001), whereas plasma ADMA levels werehigher(0.837±0.34μmol/L vs.0.3176±0.25μmol/L, p < 0.001). sTWEAK serum levels correlated with SBP(r=-0.301; p=0.005) and DBP (r=-0.279; p=0.009). Circulating plasma ADMA levels also correlated with SBP (r=0.734; p < 0.001) and DBP (r=0.733; p < 0.001). Conclusion: Young patients with yet untreated primary hypertension have lower circulating serum sTWEAK level compared with healthy controls. Further research for possible associations among serum sTWEAK, endothelial dysfunction and other measures of atherosclerosis may be of benefit in order to better understand the pathophysiology of hypertension and to establish more effective treatment options.


2017 ◽  
Vol 2017 ◽  
pp. 1-5 ◽  
Author(s):  
Darren K. Patten ◽  
Alia Ahmed ◽  
Owain Greaves ◽  
Roberto Dina ◽  
Rashpal Flora ◽  
...  

Tall cell variant (TCV) of papillary thyroid carcinoma (PTC), an aggressive form of thyroid cancer, is characterised by 50% of cells with height that is three times greater than the width. Very rarely, some of these cancers can progress to spindle cell squamous carcinoma (SCSC) resulting in cancers with elements of both SCSC and TCV PTC. Here we report a case of SCSC arising from TCV PTC. In addition to this case, we have performed a literature review and compiled all published reports of SCSC arising from TCV PTC, including the nature of treatment and the prognosis for each of the 20 patients recorded. This is intended for use as a guide for clinicians in what the most appropriate treatment options may be for a newly diagnosed patient. Due to the rarity coupled with diagnosis occurring at a very advanced stage of disease progression, performing clinical trials is difficult and therefore drawing conclusions on optimal treatment methods remains a challenge.


2021 ◽  
Vol 23 (Supplement_6) ◽  
pp. vi41-vi41
Author(s):  
Ethan Srinivasan ◽  
Emily Lerner ◽  
Ryan Edwards ◽  
Aden Haskell-Mendoza ◽  
David Huie ◽  
...  

Abstract INTRODUCTION Stereotactic radiosurgery (SRS) is a highly effective therapy for newly diagnosed brain metastases. Risk factors for new-onset seizures after SRS have not been well established. In this study, we aimed to characterize the variables predictive of seizure risk. METHODS Patients treated with SRS for newly diagnosed brain metastases were retrospectively reviewed at a single institution. Data on baseline demographics, radiation parameters, and clinical courses were collected. RESULTS 120 patients without previous seizure history were identified. Median age was 65 years (56-70.8) and baseline KPS 90 (80-90). 16 (13%) patients developed new-onset seizures within 3 months of SRS. In analyses comparing patients with and without new-onset seizures, there was no association between new-onset seizures and baseline KPS(90:80, p=0.48), prior resection (31%:28%, p=0.76), prior WBRT (6%:10%, p=1), immunotherapy or chemotherapy within 1 month (31%:21%, p=0.52 and 56%:57%, p=1), primary tumor site (p=0.07), number of lesions (2.2:3, p=0.21), cerebellar (25%:37%, p=0.41) or brainstem involvement (19%:14%, p=0.71), irradiated maximum target diameter (2.8:2.0cm p=0.191), maximum target volume (7.6:2.9 cm3 p=0.133), total dose of radiation (25:20Gy, p = 0.12), or use of fractionation (56%:35%, p=0.11). However, there was a significant difference in the total irradiated target volume (11.6 vs. 3.8 cm3, p=0.019) and a trend toward increased post-treatment seizures among patients with a total irradiated volume greater than 10cm3 (20%:9%, p=0.11, OR 2.4 [0.85-6.4]). Patients with seizures were also more likely to have received steroids (69%:34%, p=0.012) and AEDs (28%:15%, p=0.021) prior to SRS. CONCLUSIONS Our data suggest that total treatment volume is associated with new-onset seizures within 3 months of SRS. The association between seizures and exposure to steroids or AEDs prior to SRS may be a surrogate for neurologic symptoms at presentation. Patients undergoing SRS to larger volumes and necessitating prophylactic steroids or AEDs may benefit from counseling or intensification of anti-seizure therapy.


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