The DISCO App: A pilot test of an electronic patient intervention to reduce the financial burden of cancer through improved cost communication.

2020 ◽  
Vol 38 (29_suppl) ◽  
pp. 1-1
Author(s):  
Lauren M. Hamel ◽  
David W. Dougherty ◽  
Theresa A. Hastert ◽  
Erlene Kuizon Seymour ◽  
Seongho Kim ◽  
...  

1 Background: Financial toxicity, the burden of treatment cost, affects 30-50% of people with cancer in the US. Although experts recommend patients and oncologists discuss treatment cost to identify patients who need assistance, cost discussions occur in fewer than half of cancer treatment discussions. We pilot-tested the feasibility and efficacy of the Discussions of Cost (DISCO) App, a patient communication intervention designed to improve cost discussions and other financial toxicity-related outcomes during and following oncology treatment consultations. The DISCO App provides an individualized list of cost-related questions patients can ask their oncologist, specific to a patient’s economic situation. Methods: While waiting to see their oncologist, newly diagnosed patients with breast or lung cancer (n=32) used the DISCO App on an iPad. Clinic visits were videorecorded and patients completed pre- and post-intervention measures of self-efficacy for managing treatment costs, self-efficacy for interacting with oncologists, cost-related distress, and perceptions of the DISCO App. A trained coder observed the recordings to determine the presence of a cost discussion, the cost-related topic, and any emergent factors. Results: Findings showed increases in patients’ self-efficacy for managing treatment costs (p=.02) and interacting with oncologists (p=.001). Cost-related distress decreased but not significantly (p=.20). Patients reported the DISCO App was understandable (M=4.5 out of 5), useful as they talked with their oncologist (M=4.0), and 84% of patients reported needing less than 15 minutes to use the DISCO App. Most (94%) interactions were videorecorded (in two cases technical difficulties prevented videos from being collected); all (100%) of the videorecorded interactions included a cost discussion. The most frequently discussed topics were: insurance, time off from work, and financial navigation. Frequently, the oncologist asked the patient for his/her question list and discussed/answered the questions. Conclusions: Findings suggest the DISCO App is feasible to implement in the clinic and effective in improving patient-oncologist cost discussions and financial toxicity-related outcomes. Patient acceptance of the DISCO App and oncologist engagement suggested the intervention prompted cost discussions. Next steps include conducting a longitudinal randomized controlled trial to determine the effectiveness of the DISCO App on financial toxicity, and other outcomes. Clinical trial information: NCT03676920 .

2020 ◽  
Vol 38 (15_suppl) ◽  
pp. e24197-e24197
Author(s):  
Lauren M. Hamel ◽  
David W. Dougherty ◽  
Theresa A. Hastert ◽  
Erlene Kuizon Seymour ◽  
Seongho Kim ◽  
...  

e24197 Background: Financial toxicity, the burden of treatment cost, affects 30-50% of people with cancer in the United States. Although experts recommend patients and oncologists discuss treatment cost to identify patients who need assistance, cost discussions occur in fewer than half of cancer treatment discussions. We pilot-tested the feasibility and efficacy of the Discussions of Cost (DISCO) App, a patient communication intervention designed to improve cost discussions and other financial toxicity-related outcomes during and following oncology treatment consultations. The DISCO App provides an individualized list of cost-related questions patients can ask their oncologist, specific to a patient’s economic situation. Methods: While waiting to see their oncologist, newly diagnosed patients with breast or lung cancer (n=32) used the DISCO App on an iPad. Clinic visits were videorecorded and patients completed pre- and post-intervention measures of self-efficacy for managing treatment costs, self-efficacy for interacting with oncologists, cost-related distress, and perceptions of the DISCO App. A trained coder observed the recordings to determine the presence of a cost discussion, the cost-related topic, and any emergent factors. Results: Findings showed increases in patients’ self-efficacy for managing treatment costs (p=.02) and interacting with oncologists (p=.001). Cost-related distress decreased but not significantly (p=.20). Patients reported the DISCO App was understandable (M=4.5 out of 5), useful as they talked with their oncologist (M=4.0), and 84% of patients reported needing less than 15 minutes to use the DISCO App. Most (94%) interactions were videorecorded (in two cases technical difficulties prevented videos from being collected); all (100%) of the videorecorded interactions included a cost discussion. The most frequently discussed topics were: insurance, time off from work, and financial navigation. Frequently, the oncologist asked the patient for his/her question list and discussed/answered the questions. Conclusions: Findings suggest the DISCO App is feasible to implement in the clinic and effective in improving patient-oncologist cost discussions and financial toxicity-related outcomes. Patient acceptance of the DISCO App and oncologist engagement suggested the intervention prompted cost discussions. Next steps include conducting a longitudinal randomized controlled trial to determine the effectiveness of the DISCO App on financial toxicity, and other outcomes. Clinical trial information: NCT03676920 .


2021 ◽  
Author(s):  
Lauren M. Hamel ◽  
David W. Dougherty ◽  
Theresa A. Hastert ◽  
Erlene K. Seymour ◽  
Seongho Kim ◽  
...  

Abstract Background: Financial toxicity affects 30-50% of people with cancer in the US. Although experts recommend patients and oncologists discuss treatment cost, cost discussions occur infrequently. Using a non-randomized pre-test post-test design, we pilot-tested the feasibility, acceptability and preliminary effectiveness of the DIScussions of COst (DISCO) App, a patient communication intervention designed to improve the frequency of cost discussions and related outcomes. Methods: While waiting to see their oncologist, patients (n=32) used the DISCO App on a tablet. Clinic visits were video recorded and patients completed pre- and post-intervention measures of self-efficacy for managing treatment costs, self-efficacy for interacting with oncologists, cost-related distress, and perceptions of the DISCO App. Coders observed the recordings to determine the presence of cost discussions, initiators, and topics. Results: Most patients (84%) reported needing <15 minutes to use the DISCO App. Patients reported the DISCO App made it easier to ask cost-related questions. Findings showed increased self-efficacy for managing treatment costs (p=.02) and for interacting with oncologists (p=.001). All clinic visits included a cost discussion. Conclusion: The DISCO App is feasible, acceptable, and effective in prompting cost discussions and improving outcomes. Prompting patients to discuss costs before meeting with an oncologist may improve treatment cost discussions and related outcomes.Trial registration: Clinical Trials.gov registration number: NCT03676920 (September 19, 2018)


Trials ◽  
2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Lauren M. Hamel ◽  
David W. Dougherty ◽  
Seongho Kim ◽  
Elisabeth I. Heath ◽  
Lorna Mabunda ◽  
...  

Abstract Background Financial toxicity, the material and psychological burden of the cost of treatment, affects 30–50% of people with cancer, even those with health insurance. The burden of treatment cost can affect treatment adherence and, ultimately, mortality. Financial toxicity is a health equity issue, disproportionately affecting patients who are racial/ethnic minorities, have lower incomes, and are < 65 years old. Patient education about treatment cost and patient-oncologist cost discussions are recommended as ways to address financial toxicity; however, research shows cost discussions occur infrequently (Altice et al. J Natl Cancer Inst 109:djw205, 2017; Schnipper et al. J Clin Oncol 34:2925-34, 2016; Zafar et al. Oncologist 18:381-90, 2013; American Cancer Society Cancer Action Network 2010). Our overall goal is to address the burden of financial toxicity and work toward health equity through a tailorable education and communication intervention, the DISCO App. The aim of this longitudinal randomized controlled trial is to test the effectiveness of the DISCO App on the outcomes in a population of economically and racially/ethnically diverse cancer patients from all age groups. Methods Patients diagnosed with breast, lung, colorectal, or prostate cancer at a NCI-designated comprehensive cancer center in Detroit, MI, will be randomized to one of three study arms: one usual care arm (arm 1) and two intervention arms (arms 2 and 3). All intervention patients (arms 2 and 3) will receive the DISCO App before the second interaction with their oncologist, and patients in arm 3 will receive an intervention booster. The DISCO App, presented on an iPad, includes an educational video about treatment costs, ways to manage them, and the importance of discussing them with oncologists. Patients enter socio-demographic information (e.g., employment, insurance status) and indicate their financial concerns. They then receive a tailored list of questions to consider asking their oncologist. All patients will have up to two interactions with their oncologist video recorded and complete measures at baseline, after the recorded interactions and at 1, 3, 6, and 12 months after the second interaction. Outcome measures will assess discussions of cost, communication quality, knowledge of treatment costs, self-efficacy for treatment cost management, referrals for support, short- and longer-term financial toxicity, and treatment adherence. Discussion If effective, this intervention will improve awareness of and discussions of treatment cost and alleviate the burden of financial toxicity. It may be especially helpful to groups disproportionately affected by financial toxicity, helping to achieve health equity. Trial registration ClinicalTrials.gov NCT04766190. Registered on February 23, 2021


2021 ◽  
Author(s):  
Lauren M. Hamel ◽  
David W. Dougherty ◽  
Seongho Kim ◽  
Elisabeth I. Heath ◽  
Lorna Mabunda ◽  
...  

Abstract Background: Financial toxicity, the material and psychological burden of the cost of treatment, affects 30-50% of people with cancer, even those with health insurance. The burden of treatment cost can affect treatment adherence and, ultimately, mortality. Financial toxicity is a health equity issue, disproportionately affecting patients who are racial/ethnic minorities, have lower incomes, and are <65 years old. Patient education about treatment cost and patient-oncologist cost discussions are recommended as ways to address financial toxicity; however, research shows cost discussions occur infrequently1-4. Our overall goal is to address the burden of financial toxicity and work toward health equity through a tailorable education and communication intervention, the DISCO App. The aim of this longitudinal randomized controlled trial is to test the effectiveness of the DISCO App on outcomes in a population of economically and racially/ethnically diverse cancer patients from all age groups. Methods: Patients diagnosed with breast, lung, colorectal or prostate cancer at a NCI-designated comprehensive cancer center in Detroit, Michigan will be randomized to intervention or usual care arms. Intervention patients will receive the DISCO App before the second interaction with their oncologist, and some patients will receive an intervention booster. The DISCO App, presented on an iPad, includes an educational video about treatment costs, ways to manage them, and the importance of discussing them with oncologists. Patients enter socio-demographic information (e.g., employment, insurance status, etc.) and indicate their financial concerns. They then receive a tailored list of questions to consider asking their oncologist. All patients will have up to two interactions with their oncologist video recorded and complete measures at baseline, after the recorded interactions, and at 1, 3, 6 and 12 months after the second interaction. Outcome measures will assess discussions of cost, communication quality, knowledge of treatment costs, self-efficacy for treatment cost management, referrals for support, short- and longer-term financial toxicity, and treatment adherence. Discussion: If effective, this intervention will improve awareness of and discussions of treatment cost and alleviate the burden of financial toxicity. It may be especially helpful to groups disproportionately affected by financial toxicity, helping to achieve health equity. Trial registration: Clinicaltrials.gov - NCT04766190. Registered February 23, 2021


BJPsych Open ◽  
2021 ◽  
Vol 7 (S1) ◽  
pp. S287-S287
Author(s):  
Tamara Searle ◽  
Jessica Walburn ◽  
Sam Norton

AimsThis study aimed to investigate whether an intervention designed to improve photoprotective behaviours is effective at changing behaviour and whether any change could be maintained.BackgroundXeroderma Pigmentosum (XP) is a rare condition in which patients are at risk of malignancies when exposed to ultra-violet radiation (UVR). Sufferers must take extra precautions to protect themselves from UVR. They must apply sunscreen to exposed skin, wear thick clothing, gloves, and a UVR-protective visor. Treatments include preventative photoprotective measures; the use of sunscreen and protective clothing. Additionally, frequent eye and skin examinations are required and swift removal of any premalignant lesions.MethodIn this randomised controlled trial, 16 participants with XP were given questionnaires at 4 time points; baseline, post-intervention, 5 months and 9 months post-intervention. The intervention involved 7 one-on-one counselling sessions, as well as telephone consultations. Counselling sessions encouraged photoprotection adherence, self-efficacy and discussions of any barriers to improving photoprotective behaviour. This study focused on psychosocial variables, attitudes and photoprotection. Questionnaires included the photoprotection self-efficacy questionnaire, Self-Reported Behavioural Automaticity Index, Short Warwick-Edinburgh Mental Wellbeing Scale, Quality of Life and Brief Photoprotection Adherence Questionnaire.ResultThe intervention was shown to have no significant effect on participants’ questionnaires scores. Univariate ANCOVA revealed a group effect between follow-up 1 (FU1) and follow-up 2 (FU2); η2 = 0.422 for self-efficacy in wearing photoprotective clothing. A group effect was identified from BL to FU1 and FU1 to FU2; η2 = 0.343 and η2 = 0.378 respectively in how often participants reapplied sunscreen to their face when outside for longer periods. Univariate ANCOVA revealed no group or time effect for the other outcome variables; for example, sunscreen self-efficacy.ConclusionThe intervention had no significant effect on photoprotective behaviour questionnaire scores. Future research could focus on recruiting more participants globally to generate more statistically powered results. Research should focus on producing a maintainable intervention so that any positive change would produce better long-term health outcomes. This study lays the foundations for future XP research, which will be vital to improve understanding and enhance photo protective behaviour.


Trials ◽  
2019 ◽  
Vol 20 (1) ◽  
Author(s):  
Brett D. Thombs ◽  
◽  
Kylene Aguila ◽  
Laura Dyas ◽  
Marie-Eve Carrier ◽  
...  

Abstract Background Some people with rare diseases rely on peer-led support groups for disease-specific education and emotional and practical support. Systemic sclerosis (SSc), or scleroderma, is a rare autoimmune connective tissue disease. Many people with SSc cannot access support groups, and, when support groups exist, they may not be sustained due to challenges that could be addressed via leader training. The Scleroderma Patient-centered Intervention Network (SPIN), along with SSc patient organization partners, developed a training program for SSc patient support group leaders, the Scleroderma Support group Leader EDucation (SPIN-SSLED) Program. We recently completed a feasibility trial in which we successfully delivered the program to two groups of support group leaders who reported a high level of satisfaction with the program and its delivery. The primary objective of the full-scale SPIN-SSLED trial is to evaluate the effect of the program on support group leaders’ self-efficacy for carrying out their leadership role. Secondary objectives include evaluating effects on leader burnout, leader satisfaction (participation efficacy), and emotional distress. Methods/design The SPIN-SSLED trial is a pragmatic randomized controlled trial (RCT) in which 180 support group leaders will be randomly allocated to training groups of 6 participants each or to a waitlist control. We will use a partially nested RCT design to reflect dependence between individuals in training groups, but not in the waitlist control. Participants allocated to the training program will receive the 13-module SPIN-SSLED Program, delivered via webinar over the course of 3 months in weekly 60–90-min sessions. The primary outcome is leader self-efficacy, measured by the Scleroderma Support Group Leader Self-efficacy Scale post-intervention. Secondary outcomes are leader self-efficacy at 3 months post-intervention, and leader burnout, volunteer job satisfaction (participation efficacy), and emotional distress post-intervention and at 3 months post-intervention. Discussion The SPIN-SSLED trial will test whether a training program for SSc patient support group leaders increases the self-efficacy of group leaders to carry out leadership tasks. The program has the potential to significantly improve the effectiveness and sustainability of existing SSc support groups, to increase the number of available support groups, and to be adapted for other chronic diseases. Trial registration ClinicalTrials.gov, NCT03965780. Registered on 29 May 2019.


2020 ◽  
Vol 38 (15_suppl) ◽  
pp. 7071-7071
Author(s):  
Aaron Philip Mitchell ◽  
Sara Tabatabai ◽  
Pranammya Dey ◽  
Jennifer Ohn ◽  
Michael A. Curry ◽  
...  

7071 Background: The cost of many cancer drugs is very high, but it is unclear if these costs are associated with commensurate improvement in outcomes. We aimed to assess the association between the cost of cancer treatments and their clinical benefit, using the NCCN Evidence Blocks value assessment framework. Methods: The NCCN Evidence Blocks include 4 measures of clinical benefit: Efficacy, Safety, Quality of Evidence, and Consistency of Evidence. The NCCN assigns scores on each measure ranging from 1 (least favorable) to 5 (most favorable). We obtained the NCCN Evidence Blocks scores as of December 31, 2018 for all recommended cancer treatments for the 30 most prevalent cancers in the US. For each treatment, we calculated total treatment costs (including drugs, administration fees, and supportive care medications) using Medicare reimbursement rates. We categorized treatments as either “time-limited” or “time-unlimited” according to whether their costs are best reflected as per full treatment course (often, adjuvant/neoadjuvant treatments) (time-limited) or per month of therapy (often, treatments for advanced disease) (time-unlimited). We used generalized estimating equations, with clustering within treatment indications, to estimate the association between Evidence Blocks scores and treatment costs, modeling the expected change in cost associated with a one-unit increase in the score on an Evidence Blocks measure. Results: There were 541 time-unlimited and 845 time-limited treatments. Among time-unlimited treatments, monthly treatment cost ranged from $4 to $64,630. Monthly treatment cost was positively associated with Efficacy ($3,036, 95%CI: $1,782, $4,289) and Quality of Evidence ($1,509, 95%CI: $171, $2,847) but negatively associated with Safety (-$1,470, 95%CI: -$2,790, -$151) and Consistency of Evidence (-$2,003, 95%CI -$3,420, -$586). Among time-limited treatments, cost per course of therapy ranged from $0 to $775,559, and no measure was significantly associated with cost. Evidence Blocks scores accounted for little of the variation in treatment cost (linear model R-squared = 0.10 for time-unlimited, and < 0.01 for time-unlimited). Conclusions: The association between NCCN Evidence Blocks measures and treatment cost was inconsistent, and accounted for little of the cost variation among treatments for the same indication. The clinical benefit of cancer treatments does not appear to be a primary determinant of treatment cost, suggesting that current pricing models may be inadequate to incentivize the development and utilization of high-value treatments.


10.2196/22302 ◽  
2020 ◽  
Vol 22 (11) ◽  
pp. e22302
Author(s):  
Kenta Yagi ◽  
Kazuki Maeda ◽  
Satoshi Sakaguchi ◽  
Masayuki Chuma ◽  
Yasutaka Sato ◽  
...  

Background With the global proliferation of the novel COVID-19 disease, conventionally conducting institutional review board (IRB) meetings has become a difficult task. Amid concerns about the suspension of drug development due to delays within IRBs, it has been suggested that IRB meetings should be temporarily conducted via the internet. Objective This study aimed to elucidate the current status of IRB meetings conducted through web conference systems. Methods A survey on conducting IRB meetings through web conference systems was administered to Japanese national university hospitals. Respondents were in charge of operating IRB offices at different universities. This study was not a randomized controlled trial. Results The survey was performed at 42 facilities between the end of May and early June, 2020, immediately after the state of emergency was lifted in Japan. The survey yielded a response rate of 74% (31/42). Additionally, while 68% (21/31) of facilities introduced web conference systems for IRB meetings, 13% (4/31) of the surveyed facilities postponed IRB meetings. Therefore, we conducted a further survey of 21 facilities that implemented web conference systems for IRB meetings. According to 71% (15/21) of the respondents, there was no financial burden for implementing these systems, as they were free of charge. In 90% (19/21) of the facilities, IRB meetings through web conference systems were already being conducted with personal electronic devices. Furthermore, in 48% (10/21) of facilities, a web conference system was used in conjunction with face-to-face meetings. Conclusions Due to the COVID-19 pandemic, the number of reviews in clinical trial core hospitals has decreased. This suggests that the development of pharmaceuticals has stagnated because of COVID-19. According to 71% (15/21) of the respondents who conducted IRB meetings through web conference systems, the cost of introducing such meetings was US $0, showing a negligible financial burden. Moreover, it was shown that online deliberations could be carried out in the same manner as face-to-face meetings, as 86% (18/21) of facilities stated that the number of comments made by board members did not change. To improve the quality of IRB meetings conducted through web conference systems, it is necessary to further examine camera use and the content displayed on members’ screens during meetings. Further examination of all members who use web conference systems is required. Our measures for addressing the requests and problems identified in our study could potentially be considered protocols for future IRB meetings, when the COVID-19 pandemic has passed and face-to-face meetings are possible again. This study also highlights the importance of developing web conference systems for IRB meetings to respond to future unforeseen pandemics.


2016 ◽  
Vol 34 (7_suppl) ◽  
pp. 178-178 ◽  
Author(s):  
Lauren M. Hamel ◽  
Susan Eggly ◽  
Louis Penner ◽  
Robert Chapman ◽  
Justin Frank Antoni Klamerus ◽  
...  

178 Background: Financial toxicity–the burden of treatment costs and its impact on well-being, treatment decisions, and outcomes—affects many cancer patients, especially racial minorities. Discussing cost during clinic visits may ease financial toxicity, but oncologists are often hesitant to discuss cost. A better understanding of cost discussions is needed to improve care and inform oncologist training interventions. We conducted an observational study of patient-oncologist treatment cost discussions during clinic visits. Methods: Data were video-recorded clinic visits of African American patients (114) and their medical oncologists (19) meeting for the first time to discuss treatment. Cost discussions were any verbal expression of a direct (paying for scans) or indirect (time off work) expense to the patient for treatment. Trained coders observed the videos and coded for presence, duration, initiation, topic, oncologist response, and patient reaction of cost discussions. Results: Cost discussions occurred in 44% (n = 50) of the visits with a range of 1-6 per visit for a total of 93 discussions (M = 35 seconds; SD = 28). Patients initiated (61%) more than oncologists (38%), and patients were more likely to initiate multiple times. Time off work was discussed most (48%), followed by insurance (26%), transportation (12%), paying for treatment (8%), and job loss (4%). Time off work was the most commonly patient initiated topic and insurance was the most commonly oncologist initiated topic. Oncologists typically addressed the issue (72%), and patients often reacted positively (81%) but passively. A few times (9%) the oncologist acknowledged the patient’s initiation but did not address it. Negative patient reactions were rare and only occurred when the oncologist responded to a patient initiation (5%). Younger patients were more likely discuss cost than older patients (p = .02) and retired patients were less likely to discuss cost (p = .05). Conclusions: Findings suggest discussing indirect cost is important to patients, but oncologists infrequently initiate and do not always respond adequately when patients initiate. Further research and interventions are needed to address patient-oncologist cost discussions and the economic impact of cancer treatment.


2018 ◽  
Vol 36 (30_suppl) ◽  
pp. 76-76
Author(s):  
Divya Ahuja Parikh ◽  
Meera Vimala Ragavan ◽  
Debeshi Maitra ◽  
Sangeeta Aggarwal ◽  
Manali I. Patel

76 Background: The rising costs of cancer care increasingly results in financial distress for patients and their families. Low-income patients face a greater burden of financial toxicity, but few studies have characterized what factors contribute to this, and what interventions can relieve toxicity. Methods: From October 2017 to December 2017, we used a validated COST survey tool to understand the extent of financial burden that patients with cancer experience. We surveyed patients who receive their oncology care in a medical system that serves predominantly minority and low-income patients in Santa Clara County. We collected demographic information including sex, education level, ethnicity, income, insurance status, monthly out of pocket costs (OOPC) and employment status prior to diagnosis. We used a multivariable linear regression to study the association between the patient factors and financial burden as demonstrated by the COST score. All data were analyzed using Stata 14. Results: Demographic information is presented in Table 1. A total of 152 patients completed all 11 items of the COST survey. In the multivariate model, there was no significant difference in COST score by sex, education level, or ethnicity. However, income ≤$25,000 was associated with higher COST scores (p = 0.019), as was higher monthly OOPC (p = 0.003). Medicare patients and patients who were employed prior to diagnosis tended to have higher COST scores although not quite statistically significant (p = 0.057, p = 0.083). Conclusions: Patient-reported financial toxicity is an unmet concern among patients in this single institution study with a high proportion of underinsured patients. Higher OOPC and low income was associated with a higher financial burden. These findings suggest that patients would benefit from targeted interventions to mediate out of pocket costs of cancer care.[Table: see text]


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