scholarly journals Financial Burden Is Associated with Postponing Care and Decreasing Physical and Emotional Quality of Life Among Patients with Multiple Myeloma and Chronic Lymphocytic Leukemia

Blood ◽  
2020 ◽  
Vol 136 (Supplement 1) ◽  
pp. 45-45
Author(s):  
Erica E. Fortune ◽  
Melissa F. Miller ◽  
Elissa C. Kranzler ◽  
Jemeille Ackourey ◽  
Kelly Clark ◽  
...  

Background: Numerous factors contribute to the financial burden experienced by the cancer population, including medical expenses and possible job disruption or loss. The financial burdens that accompany a cancer diagnosis can influence cancer-care decisions, including the delay of essential treatment or appointments, with deleterious effects on physical and mental quality of life (QOL). Further, certain sociodemographic groups face increased risk of financial burden. The aim of this study was to examine the relationships between financial burden, postponing care, and physical and emotional quality of life among patients with multiple myeloma (MM) and chronic lymphocytic leukemia (CLL). Methods: 435 patients (72% MM; 28% CLL) enrolled in the Cancer Support Community's online survey, the Cancer Experience Registry, answered questions related to financial burden (8 items; yes/no response), postponing care (6 items; 5-point Likert scale), and QOL assessed using Patient-Reported Outcomes Measurement Information System (PROMIS-29v2.0) subscales (Anxiety, Depression, Physical Function, and Fatigue) with transformed T scores. We applied Structural Equation Modeling (SEM) to understand the direct and indirect relationship of financial burden (tally of "yes" responses to the 8 financial cost variables) with latent constructs comprising postponing care, physical QOL, and emotional QOL, and sociodemographic and clinical predictor variables. Results: Sample characteristics: mean age=62 yrs (9.2); 88% non-Hispanic White; 6% non-Hispanic Black; mean time since diagnosis=5.2 yrs (4.3); 28% ISS Stage 3 for MM or Rai Stage 3-4 for CLL. Regarding financial status, 21% have an annual income <$40k; 22% spent >$500 in monthly out-of-pocket (OOP) costs to cover cancer care and an additional 23% spent over $250. Due to the financial costs of cancer care, 29% of participants depleted their savings, 19% borrowed against or used money from a retirement plan, 13% liquidated assets, 7% collected unemployment insurance, 4% took an extra job, 4% chose a less effective treatment, 4% cashed in a life insurance policy early, and 2% had their house foreclosed. While 41% were moderately to very seriously concerned about health insurance or money, 66% reported that no one from their health care team talked to them about costs. Based on the percent reporting sometimes, often, or always engaging in behaviors related to postponing care: 12% postponed doctor's appointments, 5% postponed follow-up screening or bloodwork, 6% postponed filling prescriptions, 5% skipped dosages of prescribed drugs, 12% delayed complementary treatment including therapy, and 16% postponed psychological counseling or support. SEM analyses demonstrate that age (standardized path coefficient β=-0.17), low income (β=0.24), OOP costs (β=0.18), time since diagnosis (β=0.11), and advanced stage (β=0.17) had a significant (p<.05) effect on financial burden and financial burden, in turn, had a significant effect on postponing care (β=0.40)Further, financial burden had both a direct (β=-0.17) and indirect (β=-0.10) effect through postponing care on physical QOL, and both a direct (β=0.15) and indirect (β=0.12) effect through postponing care on emotional QOL. The χ2 of the final model was 454.2 (df=129, p<.001) and was a reasonably good fit to the data (RMSEA=0.076). Conclusions: Findings highlight the significant effect of financial burden on postponing care and poorer QOL among MM and CLL patients. Financial burden was associated with patients' treatment decisions for both cancer and psychological care, and while many patients reported distress about money and health insurance, the majority did not discuss cost of care with their health care team. Thus, MM and CLL patients may benefit from access to no- or low-cost preventative and supportive psychosocial care, as well as financial counseling and assistance with health care team communication. Patient-focused organizations help address this need through no-cost resources, including distress screening tools, access to a financial counselor on a toll-free helpline, and information about treatment decision-making. Future research that incorporates cost of care into physician-patient communication is warranted. Disclosures Fortune: Boston Scientific Foundation: Research Funding; Genentech: Research Funding. Kranzler:Astellas Pharma US, Inc.: Research Funding; Pharmacyclics, Inc.: Research Funding; Jazz Pharmaceuticals: Research Funding; Takeda Oncology: Research Funding; Janssen Oncology: Research Funding. Leblanc:Agios, AbbVie, and Bristol Myers Squibb/Celgene: Speakers Bureau; AstraZeneca: Research Funding; AbbVie, Agios, Amgen, AstraZeneca, CareVive, BMS/Celgene, Daiichi-Sankyo, Flatiron, Helsinn, Heron, Otsuka, Medtronic, Pfizer, Seattle Genetics, Welvie: Consultancy, Honoraria, Membership on an entity's Board of Directors or advisory committees; American Cancer Society, BMS, Duke University, NINR/NIH, Jazz Pharmaceuticals, Seattle Genetics: Research Funding; UpToDate: Patents & Royalties: Royalties. Zaleta:Athenex Oncology: Research Funding; Gilead Sciences, Inc: Research Funding; Pfizer, Inc.: Research Funding.

2017 ◽  
Vol 35 (15_suppl) ◽  
pp. 9588-9588
Author(s):  
Joanne S Buzaglo ◽  
Melissa F Miller ◽  
Alexandra K Zaleta ◽  
Jamese Johnson ◽  
Niraj K. Gupta

9588 Background: Melanoma survivors are at risk for significant financial burden due to cancer care and out of pocket costs. We explored 1) the financial impact of melanoma and its relationship to cancer-related distress, and 2) survivors’ experiences discussing financial burden with their health care team. Methods: Of 110 melanoma survivors enrolled in the Cancer Support Community’s online Cancer Experience Registry, 56 completed questions about financial impact of cancer and cost of care communication. Participants rated concern (0 = not at all; 4 = very seriously) about 27 items encompassing psychological, emotional, physical and practical concerns; items were summed into a total distress score (mean = 33, SD = 21, range 0-88). Financial impact and overall distress were examined via regression analysis. Results: Participants were 71% female, 89% Caucasian, median age 54, and median time since diagnosis 2.5 years. Total annual income: 34% < $60K; 46% $60K+; 20% not reported. 24% spent $101-250/month on melanoma out of pocket costs; 20% spent $251-500; and 24% spent ≥$500. The top concern was health insurance/money worries (69% moderately to very seriously concerned). Due to medical costs, 57% depleted their savings, 20% borrowed against or used retirement money, 20% used pharmaceutical assistance programs, 13% skipped medicine dosages at least sometimes, and 17% postponed filling prescriptions. Only 28% reported that their health care team spoke to them about cost of care, and 28% were asked about financial distress; 42% desired financial assistance. Financial impact was associated with an increase in overall distress for those with income < $60K (p < .05; interaction p < 0.05). Conclusions: Substantial proportions of melanoma survivors experience financial burden that can impact quality of life, particularly lower income individuals. Although oncologists are encouraged to discuss treatment costs, most patients report they have not had these discussions with providers. These results support the development/evaluation of interventions to enhance doctor-patient communication, and financial counseling to minimize financial burden of melanoma and the risks it can confer for quality of life, course of cancer care, and health outcomes.


Blood ◽  
2015 ◽  
Vol 126 (23) ◽  
pp. 874-874 ◽  
Author(s):  
Joanne S. Buzaglo ◽  
Melissa F. Miller ◽  
Clare Karten ◽  
Margaret Longacre ◽  
Victoria Kennedy ◽  
...  

Abstract Background: The US prevalence of multiple myeloma (MM) is estimated at 83,118 as of January 1, 2011 (SEER, 2014), and about 24,050 new MM cases will be diagnosed in 2014 (ACS, 2014). With advances in treatment, MM patients are living longer and are confronted with increasingly complex therapeutic decisions. Many people living with MM may have to manage a significant financial burden related to care, including medication copays and coinsurance, and other out of pocket costs. Financial toxicity can reduce quality of life and impede delivery of quality care. With the movement towards value-based cancer care, oncologists are encouraged to discuss costs with patients when considering treatment choices. We aimed to describe financial distress among MM patients and patient-provider communication about cost. Methods: From July 2013-2014, the Cancer Support Community (CSC) registered 495 MM patients to the "Cancer Experience Registry: MM," an online initiative to study and raise awareness about MM's psychosocial impact. Registrants were recruited through an outreach program including the CSC and The Leukemia & Lymphoma Society networks of communities and resources. 266 US-based registrants completed surveys including questions about the financial cost of MM and cancer-related distress. Stress-related intrusive ideation about managing the financial impact of MM was measured using the validated 7-item Impact of Event Scale (IES); levels >13 were used to indicate clinically significant symptoms associated with anxiety. Twenty-seven items from a validated distress screener (α=0.94) (CancerSupportSource, Miller 2014) were summed to create a score for overall distress (mean=33, SD=21, range 0-103), and 4 items were summed for a depression score (α=0.83) with a binary variable created to indicate at risk for depression (score≥5). Results: The sample (n=266) was 52% female, 91% Caucasian, median age 64. Median time since MM diagnosis was 4.5 years. Total annual income: 35% <$40K; 35% $40-79K; 30% at least $80K. 73% reported spending at least $100/mo on all out of pocket costs related to MM; nearly half (48%) spent $250 or more; and 22% spent $500 or more. Because of the medical costs of MM, 32% reported depleting their savings; 22% borrowed against or used money from retirement; and 35% reported cutting their grocery expenses. About one-third used pharmaceutical assistance programs (35%). In order to reduce health care costs, only 5% reported skipping dosages of medicine at least sometimes, and 6% postponed filling prescriptions. Seventeen percent reported they postponed seeking psychological counseling or support. Just over half (56%) reported a member of their health care team talked to them about resources related to getting financial help or financial counseling, and only 28% reported their health care team ever discussed the impact of MM on personal finances. Yet, 82% reported financial counseling would be 'quite a bit' or 'very much' helpful to someone with MM. A large proportion of participants reported they would be 'quite a bit' or 'very much' willing to receive financial assistance for medications (81%) and cost of treatment (77%), and, to a lesser extent, for transportation costs (55%) and living expenses (46%). There was a significant linear increase in overall distress (p=0.009) and risk for depression (p=0.010) with greater monthly increment in out of pocket costs, adjusting for income, until monthly out of pocket costs exceeded $1000. Nearly one-third (32%) reported currently experiencing clinically high levels of intrusive ideation (IES>13) about the financial cost of care. Similarly, 33% reported they were often or always upset about money and the cost of care, and 47% were moderately, seriously or very seriously concerned about health insurance or money worries. Conclusion: MM places a financial burden on patients that can significantly impact quality of life and may negatively affect treatment outcomes. Implications for future research and practice include the development and evaluation of interventions to enhance doctor-patient communication and support (e.g., financial counseling and assistance) to help ensure that the financial burden of MM does not negatively impact the patient's quality of life, course of cancer care, and health outcomes. Disclosures LeBlanc: Epi-Q: Consultancy; Helsinn Therapeutics: Honoraria, Research Funding; Boehringer Ingelheim: Membership on an entity's Board of Directors or advisory committees; Flatiron: Consultancy.


2013 ◽  
Vol 31 (15_suppl) ◽  
pp. 9578-9578 ◽  
Author(s):  
Ivy A. Ahmed ◽  
Allison Harvey ◽  
Marni Amsellem ◽  
Thomas J. Smith

9578 Background: A 2010 NIH study indicates direct cancer care expenditures will reach $158 billion in the U.S. by 2020, impacting millions of Americans. The cost of insurance for a family of 4 has increased from $6000 (2000) to over $16,000 (2011). Medical debt is a significant cause of personal bankruptcy, even if insured. The financial realities posed by costs associated with cancer care greatly complicate a cancer diagnosis. The most recent American College of Physicians Ethics Manual recommends all parties must interact honestly, openly, and fairly. (Snyder L, et al. Ann Int Med 2012, p86) This analysis explores the occurrence and value of patient-provider communication surrounding costs associated with care in a national survey of those affected by cancer. Methods: From 2011-12, 505 individuals attending Frankly Speaking About Cancer: Coping with the Cost of Care workshops completed a survey assessing experiences about the costs of cancer care. This is a Cancer Support Community national evidence-based educational program. All attendees (n=708) were eligible to complete survey. Results: Most attendees (71.3%) responded. The majority (62.4%) were people with cancer/survivors; the remainder included spouses/partners, family members, and 8.7% were health care professionals. Most (80.8%) were Caucasian, and averaged 57.2 years. Of those with cancer, 89.9% were insured at diagnosis. 59.4% reported no one on their health care team initiated a discussion about the financial aspects of their care. Included in this figure, 22.7% actively sought information from health care team, and 36.7% received no information about cost. When topic was initiated, it was by social workers (16.2%), physicians (12.3%), nurses (6.3%) or financial specialists (8.2%). When information was provided, 72.1% found it somewhat or very useful. Also, regardless of provider discussion, respondents independently sought resources for managing costs, such as other patients (44.2%), the Internet (41.5%), and patient support organizations (38.1%). Conclusions: Patients want financial information but do not receive it. These data highlight the need and value of providers initiating a dialogue about the cost of cancer care with patients.


2017 ◽  
Vol 35 (15_suppl) ◽  
pp. e15583-e15583 ◽  
Author(s):  
Linda S. House ◽  
Melissa F Miller ◽  
Alexandra K Zaleta ◽  
Jamese Johnson ◽  
Crystal Shereen Denlinger ◽  
...  

e15583 Background: Individuals with gastric cancer (GC) are at risk for significant physical, psychological, and financial burden related to their illness and cost of care. This study characterizes cancer-related distress and concerns among survivors of GC and related cancers and the support survivors receive from their health care team for these concerns. Methods: Of 110 GC survivors enrolled in the Cancer Support Community’s online Cancer Experience Registry, 30 (43% stomach, 37% esophageal, 20% GIST) rated their level of concern (0 = not at all; 4 = very seriously) about psychological, emotional, physical and practical concerns (27 items). Risk for clinically significant distress was identified via a 4-item subscale (α = 0.86, cutoff score = 6.) Participants also completed the Impact of Events (IES) intrusion subscale and questions about their healthcare team’s involvement in addressing concerns. Results: Participant median age was 61 years; median time since diagnosis was 3 years. 23% experienced recurrence; 37% had metastatic disease.The highest ranked concerns (rated moderately to very seriously) included: eating and nutrition (62%); fatigue (62%); health insurance or money worries (59%); worry about the future (59%); feeling sad or depressed (50%); changes or disruptions to work, school, or home life (48%); sleep problems (48%); and worry about family (48%). Half of respondents (50%) were at risk for clinically significant emotional distress; 39% reported intrusive thoughts about the cost of cancer care. Fewer than half indicated their health care team asked about emotional distress (43%), lifestyle (43%), work (40%), finances (37%), or family (33%). Participants wished for more help with emotions related to cancer (57%), long-term side effects (55%), and financial advice/assistance (52%). Conclusions: Substantial proportions of gastric cancer survivors express concern about physical symptoms, emotional distress, and financial burden, yet many report they are not counseled about these concerns. Efforts are needed to reduce distress and the financial burden associated with gastric cancer to reduce their potential impact on quality of life, treatment adherence, and other illness outcomes.


2015 ◽  
Vol 22 (4) ◽  
pp. 381-386 ◽  
Author(s):  
Benjamin D. Kuhns ◽  
Daniel Lubelski ◽  
Matthew D. Alvin ◽  
Jason S. Taub ◽  
Matthew J. McGirt ◽  
...  

OBJECT Infections following spine surgery negatively affect patient quality of life (QOL) and impose a significant financial burden on the health care system. Postoperative wound infections occur at higher rates following dorsal cervical procedures than ventral procedures. Quantifying the health outcomes and costs associated with infections following dorsal cervical procedures may help to guide treatment strategies to minimize the deleterious consequences of these infections. Therefore, the goals of this study were to determine the cost and QOL outcomes affecting patients who developed deep wound infections following subaxial dorsal cervical spine fusions. METHODS The authors identified 22 (4.0%) of 551 patients undergoing dorsal cervical fusions who developed deep wound infections requiring surgical debridement. These patients were individually matched with control patients who did not develop infections. Health outcomes were assessed using the EQ-5D, Pain Disability Questionnaire (PDQ), Patient Health Questionnaire (PHQ-9), and visual analog scale (VAS). QOL outcome measures were collected preoperatively and after 6 and 12 months. Health resource utilization was recorded from patient electronic medical records over an average follow-up of 18 months. Direct costs were estimated using Medicare national payment amounts, and indirect costs were based on patients' missed workdays and income. RESULTS No significant differences in preoperative QOL scores were found between the 2 cohorts. At 6 months postsurgery, the noninfection cohort had significant pre- to postoperative improvement in EQ-5D (p = 0.02), whereas the infection cohort did not (p = 0.2). The noninfection cohort also had a significantly higher 6-month postoperative EQ-5D scores than the infection cohort (p = 0.04). At 1 year postsurgery, there was no significant difference in EQ-5D scores between the groups. Health care–associated costs for the infection cohort were significantly higher ($16,970 vs $7658; p < 0.0001). Indirect costs for the infection cohort and the noninfection cohort were $6495 and $2756, respectively (p = 0.03). Adjusted for inflation, the total costs for the infection cohort were $21,778 compared with $9159 for the noninfection cohort, reflecting an average cost of $12,619 associated with developing a postoperative deep wound infection (p < 0.0001). CONCLUSIONS Dorsal cervical infections temporarily decrease patient QOL postoperatively, but with no long-term impact; they do, however, dramatically increase the cost of care. Knowledge of the financial burden of wound infections following dorsal cervical fusion may stimulate the development and use of improved prophylactic and therapeutic techniques to manage this serious complication.


2018 ◽  
pp. 1-9 ◽  
Author(s):  
Shivank Garg ◽  
Noelle L. Williams ◽  
Andrew Ip ◽  
Adam P. Dicker

Digital health constitutes a merger of both software and hardware technology with health care delivery and management, and encompasses a number of domains, from wearable devices to artificial intelligence, each associated with widely disparate interaction and data collection models. In this review, we focus on the landscape of the current integration of digital health technology in cancer care by subdividing digital health technologies into the following sections: connected devices, digital patient information collection, telehealth, and digital assistants. In these sections, we give an overview of the potential clinical impact of such technologies as they pertain to key domains, including patient education, patient outcomes, quality of life, and health care value. We performed a search of PubMed ( www.ncbi.nlm.nih.gov/pubmed ) and www.ClinicalTrials.gov for numerous terms related to digital health technologies, including digital health, connected devices, smart devices, wearables, activity trackers, connected sensors, remote monitoring, electronic surveys, electronic patient-reported outcomes, telehealth, telemedicine, artificial intelligence, chatbot, and digital assistants. The terms health care and cancer were appended to the previously mentioned terms to filter results for cancer-specific applications. From these results, studies were included that exemplified use of the various domains of digital health technologies in oncologic care. Digital health encompasses the integration of a vast array of technologies with health care, each associated with varied methods of data collection and information flow. Integration of these technologies into clinical practice has seen applications throughout the spectrum of care, including cancer screening, on-treatment patient management, acute post-treatment follow-up, and survivorship. Implementation of these systems may serve to reduce costs and workflow inefficiencies, as well as to improve overall health care value, patient outcomes, and quality of life.


Health Policy ◽  
2008 ◽  
Vol 86 (2-3) ◽  
pp. 335-344 ◽  
Author(s):  
Joan Gené-Badia ◽  
Carlos Ascaso ◽  
Georgia Escaramis-Babiano ◽  
Arantxa Catalán-Ramos ◽  
Enriqueta Pujol-Ribera ◽  
...  

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 609-610
Author(s):  
Robin Majeski ◽  
Delia Chiaramonte

Abstract Cancer disproportionately affects older adults and presents significant challenges to patients’ quality of life. Use of complementary medicine is increasing among older adults with cancer and these modalities have the potential for both benefit and harm. Thus, it is important that health care professionals are knowledgeable about the evidence-supported benefits and risks of complementary and integrative health approaches in the care of older adults with cancer. Integrative cancer care provides a comprehensive approach to reducing symptom burden in patients suffering with cancer symptoms and side effects of cancer treatment. Symptoms such as pain, fatigue, nausea, sleep disturbance, mood disorder, perceived stress, and reduced quality of life are common in this population.This session will discuss an evidence-based integrative approach to cancer care which incorporates both pharmacologic and non-pharmacologic modalities to decrease symptom burden, enhance patient well-being, and improve quality of life. Non-pharmacologic modalities used in the integrative approach to care will be described and relevant evidence for risks, benefits and indications will be presented. Case studies will be discussed to demonstrate the integration of these techniques into conventional western medical treatment plans for older adults with cancer. Diversity and inclusion issues relevant to integrative medicine for underserved cancer patients will be addressed, as well as recommendations for future research to expand access of underserved populations to evidence-supported integrative cancer care. A resource list will be provided to participants.


2005 ◽  
Vol 15 (2) ◽  
pp. 359-360
Author(s):  
L. Elit

The objective was to describe the experiences of one gynecologic oncologist in Mongolia. Gynecologic oncologists can contribute to the health of women in developing countries through education of the health care team and research into novel ways to deliver health care. Partnering with our colleagues in developing countries is a personally enriching experience. The development of gynecologic cancer care must ultimately be culturally relevant.


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