Cancer-related distress and cost of care concerns among gastric cancer 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 ◽  
...  
Keyword(s):  
Gastric Cancer ◽  
Health Care ◽  
At Risk ◽  
Emotional Distress ◽  
Financial Burden ◽  
Health Care Team ◽  
Physical Symptoms ◽  
Cost Of Care ◽  
Care Team ◽  
Clinically Significant

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.

Financial toxicity and cancer-related distress among melanoma survivors.

2017 ◽  
Vol 35 (15_suppl) ◽  
pp. 9588-9588
Author(s):  
Joanne S Buzaglo ◽  
Melissa F Miller ◽  
Alexandra K Zaleta ◽  
Jamese Johnson ◽  
Niraj K. Gupta
Keyword(s):  
Quality Of Life ◽  
Health Care ◽  
Cancer Care ◽  
Financial Burden ◽  
Health Care Team ◽  
Cost Of Care ◽  
Care Team ◽  
Financial Impact ◽  
Out Of Pocket Costs

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.

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 ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Health Care ◽  
Cancer Care ◽  
Research Funding ◽  
Financial Burden ◽  
Health Care Team ◽  
Cost Of Care ◽  
Care Team ◽  
Oncology Research

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 &lt;$40k; 22% spent &gt;$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&lt;.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&lt;.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.

Provider-patient communication about cost of care: Results from a national patient education program.

2013 ◽  
Vol 31 (15_suppl) ◽  
pp. 9578-9578 ◽  
Author(s):  
Ivy A. Ahmed ◽  
Allison Harvey ◽  
Marni Amsellem ◽  
Thomas J. Smith
Keyword(s):  
Health Care ◽  
Health Care Professionals ◽  
Cancer Care ◽  
Health Care Team ◽  
Cost Of Care ◽  
Care Team ◽  
Cancer Support ◽  
Support Organizations ◽  
National Patient ◽  
The Cost

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.

Predictors of anxiety and depression risk among individuals with lung cancer.

2019 ◽  
Vol 37 (15_suppl) ◽  
pp. e23136-e23136
Author(s):  
Kevin Stein ◽  
Shauna McManus ◽  
Pierre M. Gardan ◽  
Julie S. Olson ◽  
Melissa F. Miller ◽  
...  
Keyword(s):  
Lung Cancer ◽  
Health Care ◽  
Symptom Burden ◽  
Health Care Team ◽  
Care Team ◽  
Anxiety And Depression ◽  
Team Communication ◽  
Cancer Support ◽  
Depression Risk ◽  
Clinically Significant

e23136 Background: Lung cancer (LC) patients can face long-term symptom burden, quality of life concerns, and enduring distress. This study explored predictors of psychosocial distress among a community-based sample of LC survivors. Methods: 208 individuals with LC enrolled in Cancer Support Community’s Cancer Experience Registry, provided demographic/clinical background, and reported cancer-related distress using CancerSupportSource, a 25-item tool measuring level of concern ( 0-4) over 5 domains: emotional well-being (including 2-item depression and 2-item anxiety risk screening subscales), symptom burden and impact, body image and healthy lifestyle, health care team communication (HCTC), and relationships and intimacy. Using logistic regression, we estimate which domains influence anxiety and depression risk, controlling for significant demographic/clinical variables. Results: Participants were 68% female, 83% non-Hispanic White; mean ( SD) age = 61 (11) years; mean ( SD) years since diagnosis = 3.1 (4.5); 86% non-small cell lung cancer (NSCLC); 43% ever diagnosed as metastatic. 52% underwent surgery; 76% received chemotherapy, 65% radiation. 53% were at risk for clinically significant anxiety; 42% for clinically significant depression. Concerns about relationships and intimacy were associated with greater odds of anxiety risk ( OR= 1.70; p< .01); a positive interaction suggested that anxiety risk among individuals with NSCLC varied by HCTC concerns, with greater concerns being associated with higher risk ( p< .05). Concerns about symptom burden and impact ( OR= 1.21; p< .01) and HCTC ( OR= 1.57; p< .05) were significantly associated with greater odds of depression risk; these associations did not vary by LC type. Conclusions: Concerns around health care team communication, relationships and intimacy, and symptom burden and impact are important considerations in understanding risk for anxiety and depression among lung cancer patients and survivors. Additionally, type of lung cancer (NSCLC) can moderate the degree to which concerns about HCTC are associated with risk. Findings highlight the need for constructive patient-provider communication, particularly around relationships and intimacy and symptom burden. Clinical trial information: NCT02333604.

Multiple Myeloma Patient Experience with Financial Toxicity: Findings from the Cancer Experience Registry

Blood ◽  
2015 ◽  
Vol 126 (23) ◽  
pp. 874-874 ◽  
Author(s):  
Joanne S. Buzaglo ◽  
Melissa F. Miller ◽  
Clare Karten ◽  
Margaret Longacre ◽  
Victoria Kennedy ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Health Care ◽  
Financial Burden ◽  
Health Care Team ◽  
Depression Score ◽  
Cost Of Care ◽  
Financial Counseling ◽  
Cancer Experience ◽  
Out Of Pocket Costs

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.

Cancer-related distress and unmet needs among members of a metastatic breast cancer registry.

2014 ◽  
Vol 32 (26_suppl) ◽  
pp. 118-118
Author(s):  
Joanne S. Buzaglo ◽  
Melissa F Miller ◽  
Anne Morris ◽  
Allison Harvey ◽  
Mitch Golant
Keyword(s):  
Breast Cancer ◽  
Health Care ◽  
Metastatic Breast Cancer ◽  
Metastatic Breast ◽  
Health Care Team ◽  
Cost Of Care ◽  
Care Team ◽  
Comprehensive Cancer Center ◽  
Community Based ◽  
Cancer Support

118 Background: An estimated 155,000 people are living with metastatic breast cancer (MBC) in the US. Emotional distress among people living with MBC is common; yet, little is known about the patient experience and distress screening. Methods: Since March 2013, the Cancer Support Community has registered 909 people living with MBC to the Cancer Experience Registry, an online initiative that is designed to raise awareness about the psychosocial impact of cancer. 599 registrants responded to questions about cancer related distress. This sample was 99% female, 91% Caucasian, and 69% with a college degree and median age 56. Median time since MBC diagnosis was 3 years. Results: The top sources of distress (% rated seriously or very seriously concerned) were: (1) worry about the future (44%); (2) fatigue (39%); (3) health insurance or money worries (38%). 49% reported fatigue was ‘quite a bit’ or ‘very much’ disruptive in their life and 46% reported intrusive ideation about the financial cost of care. Factors that were independently associated with greater overall distress included younger age (p<0.001), higher comorbidity (p<0.001), lower income (p=0.001). 43% of respondents were never asked about distress by their health care team. Those who received all or part of their treatment in an academic or comprehensive cancer center were significantly more likely to be asked about distress versus those receiving treatment anywhere else (65% vs. 50%, p=0.002). Among those who were asked about distress (n=340), 62% received referrals to manage distress within their health care system, and 19% at a community-based organization; 47% reported their health care team helped coordinated distress-related care. 20% of those asked about distress never received referrals for managing it. Conclusions: These findings support the need for integrated supportive care services and better side-effect management. Disturbingly, 20% of patients who asked for referrals never received them and only 19% of patients were referred to community-based organizations for treating their distress where these services are often provided at low or no-cost. There is an on-going need for coordinated care that integrates programs and services across health care systems.

scholarly journals SARS-CoV-2 and Hemodialysis: diffusion and mortality in patients and health care team. Reflections from the Lombardy experience

2021 ◽  
Vol 34 (2) ◽  
pp. 277-279
Author(s):  
Giuseppe Rombolà ◽  
◽  
Marco Heidempergher ◽  
Marina Cornacchiari ◽  
Ivano Baragetti ◽  
...  
Keyword(s):  
Health Care ◽  
Health Care Team ◽  
Care Team

Empowering Nurses: Communicating Potential Medication Misuse

2021 ◽  
pp. 107839032110286
Author(s):  
Kelly A. Carlson ◽  
Corey E. Potter
Keyword(s):  
Health Care ◽  
Nursing Education ◽  
Interdisciplinary Communication ◽  
Health Care Team ◽  
Nursing Leadership ◽  
Care Team ◽  
Survey Study ◽  
Prescription Medications ◽  
Medication Misuse ◽  
Education Practice

BACKGROUND In nursing education and practice, we prepare nurses on topics such as patient care, pathophysiology, pharmacology, nursing leadership, and nursing competencies. Unfortunately, we may be missing the mark when it comes to integrating these topics and applying them to situations that arise in health care such as medication misuse. Nurses work intimately with patients and can recognize potential medication misuse by reviewing medication regimens and assessing necessity of PRN patient requests. In cases where nurses suspect misuse, they may or may not feel comfortable addressing these concerns with other members of the health care team. AIMS Study aims were to assess the baseline of whether nurses are comfortable with their level of skill to recognize potential patient medication misuse and to assess nurses’ comfortability with communicating these concerns with other nurses, providers, and patients. METHODS This survey study was designed to obtain practical information about nurses understanding of misused and diverted prescription medications and level of comfort with expressing concerns about the use of central nervous system depressants to inform education, practice, and research. Three-hundred and fifty nurses at one hospital were invited to participate in an anonymous REDCap survey. RESULTS Thirty-five percent of the surveyed nurses returned the survey. Responding nurses were more comfortable sharing their own knowledge and the need for more education on the topic than they were discussing interdisciplinary communication. CONCLUSIONS Empowering nurses to communicate this knowledge with others on the health care team has major public health implications to reduce the negative outcomes of misused medications.

Sign in / Sign up

Export Citation Format

Share Document