Patient-Reported Financial Burden in Thyroid Cancer

2021 ◽  
Vol 266 ◽  
pp. 160-167
Author(s):  
Jordan M. Broekhuis ◽  
Chun Li ◽  
Hao Wei Chen ◽  
Natalia Chaves ◽  
Sarah Duncan ◽  
...  
2021 ◽  
pp. ijgc-2021-002885
Author(s):  
Jacqueline Feinberg ◽  
Karen Carthew ◽  
Emily Webster ◽  
Kaity Chang ◽  
Nita McNeil ◽  
...  

ObjectiveGiven the inconvenience and financial burden of frequent ovarian cancer surveillance and the risks of in-person visits due to COVID-19, which have led to the acceleration of telehealth adaptation, we sought to assess the role of in-person physical examination for the detection of ovarian cancer recurrence among patients enrolled in a routine surveillance program.MethodsThis was a retrospective study of patients initially seen from January 2015 to December 2017 who experienced ovarian cancer recurrence during first clinical remission. Descriptive statistics and bivariate analyses were performed to compare differences in detection methods and in patient and disease characteristics.ResultsAmong 147 patients who met our inclusion criteria, there were no recurrences detected by physical examination alone. Forty-six (31%) patients had recurrence first detected by tumor marker, 81 (55%) by radiographic scan, 17 (12%) by presentation of new symptoms, and 3 (2%) by biopsies taken during non-oncological surgery. One hundred and eleven patients (75%) had multiple positive findings at the time of recurrence. Of all 147 patients, 48 (33%) had symptoms, 21 (14%) had physical examination findings, 106 (72%) had increases in tumor markers, and 141 (96%) had changes on imaging.ConclusionsIn-person physical examination was not a primary means of detection for ovarian cancer recurrence for any patient. Substituting in-person visits for virtual visits that include patient-reported symptoms, alongside a regular surveillance protocol that includes tumor marker testing and imaging, may be a suitable approach for the detection of ovarian cancer recurrence while also reducing patient inconvenience and risks to health.


Blood ◽  
2019 ◽  
Vol 134 (Supplement_1) ◽  
pp. 4712-4712
Author(s):  
Shoshana Revel-Vilk ◽  
Tama Dinur ◽  
Majdolen Istaiti ◽  
Dafna Frydman ◽  
Michal Becker-Cohen ◽  
...  

The introduction of disease specific therapy for patients with type 1 Gaucher disease (GD) was a revolution in the management of patients, but not without significant cost to the patient and to society. The management of mildly effected patients is still debated, and reviews about GD as well as chapters in textbooks fail to emphasize the fact that some patients may remain untreated for many years without any GD-related complications. Patient reported outcome measures (PROMs) were developed as a way to ascertain patients' views of their symptoms, their functional status, and their health-related quality-of-life (HRQoL). In this study, we evaluated the responses to a GD -specific PROM of untreated patients with GD1 and compared them to patients on GD-specific therapy. Methods: A PROM survey was developed for GD including 15 questions; six Point Verbal Response Scale regarding the last month and nine Visual Analogue Scales (VAS) from 0-10 regarding the last week (Elstein D, et al. Molecular Genetics and Metabolism 2019;126:S52). The PROM survey was proven to be accurate in encompassing disease-specific patient concerns. A Hebrew translated version of the GD-PROM was sent via mobile phone survey to 400 adult patients with type 1 GD followed in our Gaucher Unit. Clinical data and treatment status were extracted from the clinical charts. T-test and Mann-Whitney U test were used to compare normally and non-normally distributed data in independent samples, respectively. IBM SPSS version 25 was used for analysis. Results were considered to be statistically significant when two-tailed P-values were ≤0.01. Results: A total of 181 patients responded (45% response rate) of whom 65 (36%) were followed for at least 5 years in our unit without receiving GD specific therapy, i.e. enzyme replacement therapy (ERT) and/or substrate reduction therapy (SRT). The median (range) age of patients, 49 (20-91) years, was not significantly different between treated and untreated patients. The percentage of patients with the N370S/N370S genotype was significantly higher in untreated patients [55/65 (85%)] compared to treated patients [67/116 (57%)]. Significantly more treated patients reported that GD had restricted their education/job (38, 34%) and fun activities (29,25%) compared to untreated patients, (4, 6.5%) and (2, 3%), respectively. Compared to untreated patients, treated patients were more worried to be an emotional burden on others [27 (23%) vs. 3 (5%)], of being financial burden on others [57 (50%) vs. 16 (25%)] and more concerned regarding the risk of bone disease [82 (74%) vs. 26 (40%)], and the risk of Parkinson disease [72 (64%) vs. 27 (42%)]. Treated patients had a significantly higher score on VAS for questions on swollen abdomen, fatigue, physical weakness, severity of bone pain and worry regarding the future over the past week compared to untreated patients (Table 1). Patients concern regarding the risk for cancer (32%) and VAS score for a question on depression were similar between groups. Conclusion:The GD-specific PROM survey shows that asymptomatic or mildly affected untreated patients with GD1 have good functional status and HRQoL, supporting our practice that not all patients with GD1 require disease-specific therapy. Still, we advise a periodic (annual or bi-annual) follow-up, preferably at a referral center. Inclusion of GD-specific PROMs in the periodic assessments is important for better understanding patients' perspectives. It is important to note that mildly affected and asymptomatic patients are mainly found among Ashkenazi Jews and from this aspect our cohort reflects patients' populations in Israel, USA, UK, etc. but less relevant to non-Jewish and particularly to Asian cohorts. With the expected increase in early diagnosis via parental and/or newborn screening the understanding that not all subjects diagnosed with GD needs disease-specific therapy is all the more important. Despite the expected differences between the more severely affected treated patients and the by definition milder untreated ones, still a high percentage of the treated patients show good HRQoL parameters, reflecting the overall success of ERT/SRT. Larger cohorts and further analysis will evaluate potential predictors for differences in PROMs within the treatment group. Disclosures Revel-Vilk: Sanofi: Honoraria, Other: Travel, Research Funding; Pfizer: Honoraria, Other: Travel, Research Funding; Takeda: Honoraria, Other: Travel, Research Funding; Prevail therapeutics: Honoraria, Other: Travel, Research Funding. Zimran:Prevail Therapeutics: Consultancy; TAKEDA: Honoraria; Centogene: Other: research grant; Targeted Cell Therapies: Consultancy; Pfize: Honoraria, Research Funding; Shire: Consultancy, Honoraria, Research Funding; Bio-events: Honoraria.


2021 ◽  
Vol 12 ◽  
Author(s):  
Ashika Mani ◽  
Tales Santini ◽  
Radhika Puppala ◽  
Megan Dahl ◽  
Shruthi Venkatesh ◽  
...  

Background: Magnetic resonance (MR) scans are routine clinical procedures for monitoring people with multiple sclerosis (PwMS). Patient discomfort, timely scheduling, and financial burden motivate the need to accelerate MR scan time. We examined the clinical application of a deep learning (DL) model in restoring the image quality of accelerated routine clinical brain MR scans for PwMS.Methods: We acquired fast 3D T1w BRAVO and fast 3D T2w FLAIR MRI sequences (half the phase encodes and half the number of slices) in parallel to conventional parameters. Using a subset of the scans, we trained a DL model to generate images from fast scans with quality similar to the conventional scans and then applied the model to the remaining scans. We calculated clinically relevant T1w volumetrics (normalized whole brain, thalamic, gray matter, and white matter volume) for all scans and T2 lesion volume in a sub-analysis. We performed paired t-tests comparing conventional, fast, and fast with DL for these volumetrics, and fit repeated measures mixed-effects models to test for differences in correlations between volumetrics and clinically relevant patient-reported outcomes (PRO).Results: We found statistically significant but small differences between conventional and fast scans with DL for all T1w volumetrics. There was no difference in the extent to which the key T1w volumetrics correlated with clinically relevant PROs of MS symptom burden and neurological disability.Conclusion: A deep learning model that improves the image quality of the accelerated routine clinical brain MR scans has the potential to inform clinically relevant outcomes in MS.


Author(s):  
Archana Radhakrishnan ◽  
David Reyes-Gastelum ◽  
Paul Abrahamse ◽  
Brittany Gay ◽  
Sarah T Hawley ◽  
...  

Abstract Context Little is known about provider specialties involved in thyroid cancer diagnosis and management. Objective Characterize providers involved in diagnosing and treating thyroid cancer. Design/Setting/Participants We surveyed patients with differentiated thyroid cancer from the Georgia and Los Angeles County SEER registries (N=2632, 63% response rate). Patients identified their primary care physicians (PCP), who were also surveyed (N=162, 56% response rate). Main outcome measures 1) patient-reported provider involvement (endocrinologist, surgeon, PCP) at diagnosis and treatment; 2) PCP-reported involvement (more vs. less) and comfort (more vs. less) with discussing diagnosis and treatment. Results Among thyroid cancer patients, 40.6% reported being informed of their diagnosis by their surgeon, 37.9% by their endocrinologist, and 13.5% by their PCP. Patients reported discussing their treatment with their surgeon (71.7%), endocrinologist (69.6%), and PCP (33.3%). Physician specialty involvement in diagnosis and treatment varied by patient race/ethnicity and age. For example, Hispanic patients (vs. non-Hispanic White) were more likely to report their PCP informed them of their diagnosis (OR: 1.68, 95%CI: 1.24-2.27). Patients ≥65years (vs. <45years) were more likely to discuss treatment with their PCP (OR: 1.59; 95%CI 1.22-2.08). Although 74% of PCPs reported discussing their patients’ diagnosis and 62% their treatment, only 66% and 48% respectively were comfortable doing so. Conclusions PCPs were involved in thyroid cancer diagnosis and treatment and their involvement was greater among older patients and patients of minority race/ethnicity . This suggests an opportunity to leverage PCP involvement in thyroid cancer management to improve health and quality of care outcomes for vulnerable patients.


2019 ◽  
Vol Volume 11 ◽  
pp. 7893-7907 ◽  
Author(s):  
Poupak Fallahi ◽  
Silvia Martina Ferrari ◽  
Giusy Elia ◽  
Francesca Ragusa ◽  
Sabrina Rosaria Paparo ◽  
...  

Surgery ◽  
2020 ◽  
Vol 167 (1) ◽  
pp. 102-109 ◽  
Author(s):  
David T. Hughes ◽  
David Reyes-Gastelum ◽  
Kevin J. Kovatch ◽  
Ann S. Hamilton ◽  
Kevin C. Ward ◽  
...  

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. A885-A886
Author(s):  
Russell K Fung ◽  
Madeline Fasen ◽  
Firas Warda ◽  
Patrick Natter ◽  
Stacey Nedrud ◽  
...  

Abstract Background: Papillary thyroid cancer (PTC) metastases to the clavicular bone is rare. While the lung is considered the most common site of metastases from thyroid malignancy, osseous metastases, if seen, are usually observed at sites such as humerus, pelvis, radius, and scapula. Clinical Case: A 44-year-old man presented with an enlarging right neck mass for six months after light trauma to that area. Other than mild pain in the described area, the patient reported 20 lbs of weight loss. Initial x-ray revealed a large soft tissue density mass that extended to the midline of the right proximal clavicle. Soft-tissue neck ultrasound noted a 5.4 x 3.6 cm mass extending from the thyroid with findings of increased vascularity and calcification. CT scan of the neck depicted the extension of the mass into the adjacent sternoclavicular junction with osteolysis of the middle third of the clavicle as well as the superior aspect of the sternal body. A fine needle aspiration of the mass revealed thyroid neoplasm with follicular features and positive immunostaining consistent with thyroid carcinoma. Chest CT showed invasion into the right proximal clavicle, tracheal deviation and extension into the mediastinum. The patient underwent a composite resection of the tumor, including a segmental osteotomy of approximately two-thirds of the medial clavicle. Post surgically the patient’s serum calcium was low at 7.9 mg/dL with a concurrently low PTH of 9 pg/mL and a low 25-hydroxyvitamin D of 16.8 ng/mL. Thyroglobulin was markedly high at 15655.0 ng/mL (confirmed on dilution), and thyroglobulin antibody < 1.0 IU/mL. Pathology report confirmed PTC with extra-thyroidal extension and involvement of clavicle (staged pT4a pN0), however margins and lymph nodes were negative for carcinoma with further genomic findings showing positive KRAS mutation. The patient’s post-operative course was complicated by a large expanding left neck hematoma after a fall; he was immediately readmitted with the hematoma subsequently safely evacuated. Levothyroxine has been held at this time with plans for radioactive iodine treatment eight weeks after surgery. Conclusion: Bone metastases from differentiated thyroid cancer is rare, especially clavicular metastasis arising from PTC. Bone scintigraphy, x-ray and fine needle biopsy are some of the widely utilized methods employed in the evaluation of bone metastasis in the setting of thyroid malignancy. The prospect of recovery is generally favorable in cases of bone metastases, however various factors can affect prognosis and long-term outcomes. Reference: Krishnamurthy A. Clavicle metastasis from carcinoma thyroid- an atypical skeletal event and a management dilemma. Indian J Surg Oncol. 2015;6(3):267-270. doi:10.1007/s13193-015-0387-y


2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. A1001-A1002
Author(s):  
Lisette Patricia Rodriguez ◽  
Jesus B Perez ◽  
Wilhelmine Wiese-Rometsch

Abstract Introduction: MEN 2A is an autosomal dominant hereditary syndrome considered part of the medullary thyroid carcinoma (MTC) syndromes. This is characterized by MTC, pheochromocytoma, and parathyroid hyperplasia or adenomas causing primary hyperparathyroidism (PHPT). Clinical Case: A 34 year old female was referred to our clinic for multi-nodular goiter diagnosed during routine gynecologic evaluation. A thyroid ultrasound revealed a heterogeneous right thyroid lobe with a hypoechoic 2.5 cm nodule, associated macro calcifications and increased vascularity; and a left nodule measuring 2.3 cm with the same characteristics. Bilateral thyroid nodule biopsies were performed, resulting in MTC confirmed by positive calcitonin staining. Pre-operative studies revealed serum calcitonin and carcinoembryonic antigen (CEA), both of which are considered serologic markers of MTC activity, at 4,340 pg/ml (n <= 5) and 276.2 ng/mL (n <= 2.5 in non-smokers) respectively. The patient reported father with history of unspecified thyroid cancer, and paternal uncle with history of pheochromocytoma with a p.Cys634Trp mutation in RET proto-oncogene. Due to her family history, pre-operative screening for primary hyperparathyroidism (PHPT) resulted in a calcium 10 mg/dL (n 8.6-10.2), PTH 34 pg/mL (n 14-64). Additionally, screening for pheocromocytoma revealed an elevated 24 hour urine metanephrines of 2,276 (n <= 49-290) ug/24h, plasma metanephrines, including fractionated metanephrine (MN) at 163 (n <= 57) pg/ml, fractionated nor-metanephrine (NMN) at 182 (n <= 148) pg/ml, and total, Free (MN+NMN) metanephrines at 345 (n <= 205) pg/ml. CT abdomen revealed bilateral adrenal nodules, right measuring 1.4 x 3.3 cm and left 2.4 x 3.3 cm. The patient underwent posterior retroperitoneoscopic adrenalectomy with cortex sparing prior to thyroidectomy. Adrenal pathology resulted in bilateral pheochromocytoma with peri-adrenal adipose tissue microscopic involvement, and positive synaptophysin and S-100 stain. Subsequently, she underwent total thyroidectomy with extensive cervical lymph node resection, with pathology resulting in MTC with lymph node metastasis, involving 5/18 cervical lymph nodes. Post-operative labs revealed serum calcitonin <= 2 pg/ml, CEA 26.8 ng/mL, MN < 25 pg/ml, NMN 102 pg/ml, and MN+NMN of 102 pg/ml, which suggested initial surgical success. Post-operative genetic test evaluation revealed abnormal RET oncogene testing compatible with MEN 2A, variant 1: c.1902C>G (p.Cys634Trp). Conclusion: This case illustrates that patients presenting with MTC and reporting family history of thyroid cancer should be screened for familial MTC syndrome. Patients with RET mutation should be screened for pheochromocytoma prior to surgery for MTC to prevent life-threatening hypertensive crisis.


2020 ◽  
Vol 18 (10) ◽  
pp. 1366-1373
Author(s):  
Kate Watabayashi ◽  
Jordan Steelquist ◽  
Karen A. Overstreet ◽  
Anthony Leahy ◽  
Erin Bradshaw ◽  
...  

Background: Few studies have engaged patients and caregivers in interventions to alleviate financial hardship. We collaborated with Consumer Education and Training Services (CENTS), Patient Advocate Foundation (PAF), and Family Reach (FR) to assess the feasibility of enrolling patient–caregiver dyads in a program that provides financial counseling, insurance navigation, and assistance with medical and cost of living expenses. Methods: Patients with solid tumors aged ≥18 years and their primary caregiver received a financial education video, monthly contact with a CENTS counselor and PAF case manager for 6 months, and referral to FR for help with unpaid cost of living bills (eg, transportation or housing). Patient financial hardship and caregiver burden were measured using the Comprehensive Score for Financial Toxicity–Patient-Reported Outcomes (COST-PRO) and Caregiver Strain Index (CSI) measures, respectively, at baseline and follow-up. Results: Thirty patients (median age, 59.5 years; 40% commercially insured) and 18 caregivers (67% spouses) consented (78% dyad participation rate). Many participants faced cancer-related financial hardships prior to enrollment, such as work change or loss (45% of patients; 39% of caregivers) and debt (64% of patients); 39% of caregivers reported high levels of financial burden at enrollment. Subjects received $11,000 in assistance (mean, $772 per household); 66% of subjects with income ≤$50,000 received cost-of-living assistance. COST-PRO and CSI scores did not change significantly. Conclusions: Patient–caregiver dyads were willing to participate in a financial navigation program that addresses various financial issues, particularly cost of living expenses in lower income participants. Future work should address financial concerns at diagnosis and determine whether doing so improves patient and caregiver outcomes.


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