Perspectives on Conversations About Costs of Cancer Care of Breast Cancer Survivors and Cancer Center Staff: A Qualitative Study

Maria Pisu; Yu-Mei Schoenberger; Ivan Herbey; Aquila Brown-Galvan; Margaret I. Liang; Kevin Riggs; Karen Meneses

doi:10.7326/M18-2117

Supplement: Cost-of-Care Conversations |7 May 2019

Perspectives on Conversations About Costs of Cancer Care of Breast Cancer Survivors and Cancer Center Staff: A Qualitative Study Free

Maria Pisu, PhD; Yu-Mei Schoenberger, PhD; Ivan Herbey, MD; Aquila Brown-Galvan, MPH; Margaret I. Liang, MD; Kevin Riggs, MD; Karen Meneses, PhD, RN†

Article, Author, and Disclosure Information

† Deceased.

This article is part of the Annals supplement “Fostering Productive Health Care Cost Conversations: Sharing Lessons Learned and Best Practices.” The Robert Wood Johnson Foundation provided funding for publication of this supplement.

Division of Preventive Medicine and Comprehensive Cancer Center, University of Alabama at Birmingham (M.P., Y.S.)
Division of Gastrointestinal Surgery, University of Alabama at Birmingham (I.H.)
Division of Preventive Medicine, University of Alabama at Birmingham (A.B., K.R.)
Division of Gynecologic Oncology and Comprehensive Cancer Center, University of Alabama at Birmingham (M.I.L.)
School of Nursing and Comprehensive Cancer Center, University of Alabama at Birmingham (K.M.)
Acknowledgment: The authors thank the Institute for Cancer Outcomes and Survivorship and Comprehensive Cancer Center, University of Alabama at Birmingham, for their support.
Financial Support: By the Robert Wood Johnson Foundation (grant 74122).
Disclosures: Dr. Pisu reports a grant from the Robert Wood Johnson Foundation. Dr. Riggs reports grants from the Agency for Healthcare Research and Quality during the conduct of the study. Authors not named here have disclosed no conflicts of interest. Disclosures can also be viewed at www.acponline.org/authors/icmje/ConflictOfInterestForms.do?msNum=M18-2117.
Editors' Disclosures: Christine Laine, MD, MPH, Editor in Chief, reports that her spouse has stock options/holdings with Targeted Diagnostics and Therapeutics. Darren B. Taichman, MD, PhD, Executive Editor, reports that he has no financial relationships or interests to disclose. Cynthia D. Mulrow, MD, MSc, Senior Deputy Editor, reports that she has no relationships or interests to disclose. Jaya K. Rao, MD, MHS, Deputy Editor, reports that she has stock holdings/options in Eli Lilly and Pfizer. Catharine B. Stack, PhD, MS, Deputy Editor for Statistics, reports that she has stock holdings in Proctor & Gamble, Pfizer, and Johnson & Johnson. Christina C. Wee, MD, MPH, Deputy Editor, reports employment with Beth Israel Deaconess Medical Center. Sankey V. Williams, MD, Deputy Editor, reports that he has no financial relationships or interests to disclose. Yu-Xiao Yang, MD, MSCE, Deputy Editor, reports that he has no financial relationships or interest to disclose.
Corresponding Author: Maria Pisu, PhD, Division of Preventive Medicine, University of Alabama at Birmingham, MT 636, 1720 2nd Avenue South, Birmingham, AL 35294-4410; e-mail, mpisu@uab.edu.
Current Author Addresses: Dr. Pisu: Division of Preventive Medicine, University of Alabama at Birmingham, MT 636, 1720 2nd Avenue South, Birmingham, AL 35294-4410.
Dr. Schoenberger: Division of Preventive Medicine, University of Alabama at Birmingham, MT 617, 1720 2nd Avenue South, Birmingham, AL 35294-4410.
Dr. Herbey: Division of Gastrointestinal Surgery, Department of Surgery, University of Alabama at Birmingham, BBRB 220A, 1720 2nd Avenue South, Birmingham, AL 35294-2170
Ms. Brown-Galvan: Division of Preventive Medicine, Department of Medicine, University of Alabama at Birmingham, MT 401, 1720 2nd Avenue South, Birmingham, AL 35294-4410.
Dr. Liang: Division of Gynecologic Oncology, Department of Obstetrics & Gynecology, University of Alabama at Birmingham, 1700 6th Avenue South, Building 176F, Room 10250, Birmingham, AL 35233.
Dr. Riggs: Division of Preventive Medicine, University of Alabama at Birmingham, MT 610, 1720 2nd Avenue South, Birmingham, AL 35294-4410.
Author Contributions: Conception and design: M. Pisu, K. Meneses.
Analysis and interpretation of the data: M. Pisu, Y.M. Schoenberger, I. Herbey, M.I. Liang, K. Riggs, K. Meneses.
Drafting of the article: M. Pisu, I. Herbey, K. Meneses.
Critical revision of the article for important intellectual content: Y.M. Schoenberger, M.I. Liang, K. Riggs, K. Meneses.
Final approval of the article: M. Pisu, Y.M. Schoenberger, I. Herbey, A. Brown-Galvan, M.I. Liang, K. Riggs, K. Meneses.
Provision of study materials or patients: A. Brown-Galvan.
Obtaining of funding: M. Pisu.
Administrative, technical, or logistic support: A. Brown-Galvan.
Collection and assembly of data: M. Pisu, Y.M. Schoenberger, A. Brown-Galvan, K. Meneses.

Abstract

Background:

Despite recommendations to discuss the cost of care (CoC) with patients with cancer, little formal guidance is available on how to conduct these sensitive conversations in ways that are acceptable to both patients and providers.

Objective:

To explore the perspectives of patients and medical and nonmedical cancer center staff on CoC conversations.

Design:

In individual interviews, participants were asked to discuss the content of, timing of, and ideal person to hold CoC conversations. Interviews were transcribed verbatim. Content was analyzed to identify emerging essential elements.

Setting:

Division of Preventive Medicine, University of Alabama at Birmingham.

Participants:

42 women aged 60 to 79 years with a history of breast cancer and 20 cancer center staff (6 physicians, 4 nurses, 5 patient navigators, 3 social workers, and 2 billing specialists).

Results:

Both patients and providers identified reassurance and action as essential elements of CoC conversations. Participants expressed the importance of reassurance that recommended medical care would not be affected by affordability challenges. Action was intended as discussions on ways to help patients cover treatment-related costs, such as discussion of payment plans or linkage to financial resources. Optimal timing for CoC conversations was felt to be after an initial consult visit but before treatment started. The person to hold these conversations should be compassionate, helpful, and knowledgeable of the patient's specific situation (for example, treatment plan, insurance coverage) and of the resources available to attain the patient's goals of care.

Limitation:

Interviews were limited to older breast cancer survivors and staff at 1 institution.

Conclusion:

Conversations about CoC extend beyond discussing costs and must be sensitive to the vulnerability experienced by patients. These findings can guide training of personnel involved in CoC conversations.

Primary Funding Source:

Robert Wood Johnson Foundation.

The Institute of Medicine (now renamed the National Academies of Science, Engineering, and Medicine) recommends to provide patients with cancer and their caregivers understandable information on the cost of care (CoC) (1). This is in line with the preferences of patients, who want to know and discuss CoC with their providers (2–6), although only a few report having such conversations (7). Conversations about CoC at the time of care may have several advantages, such as facilitating informed decisions about treatment options, enabling patients to budget for forthcoming costs, and potentially lowering costs and financial toxicity (that is, the objective and subjective impact of the costs associated with cancer treatment) (5, 8–12). Not discussing CoC could increase the risk for greater-than-expected costs (13), with associated material, psychological, behavioral, and financial hardship (14–17).

Despite the urgency and benefits of CoC conversations, little guidance is available on how to approach this topic with patients and caregivers (18). Patients and providers may have different perspectives on when these conversations should occur; who should initiate them; and, most important, what their content should be. In this study, we addressed these knowledge gaps by using individual interviews with breast cancer survivors and medical and nonmedical personnel of a tertiary care cancer center.

Methods

We conducted interviews with breast cancer survivors and cancer center staff from the University of Alabama at Birmingham (UAB) Comprehensive Cancer Center. The purpose of these interviews was to evaluate fliers developed to communicate CoC information (results not reported here), and to understand preferences and perspectives on CoC conversations.

The study and associated materials were approved by the UAB institutional review board. Survivors and cancer center staff who participated gave written informed consent before the interview and received a monetary incentive of $50 at conclusion.

Participants and Recruitment

With about 75% of cancer survivors projected to be 65 years of age or older in 2040 (19), we focused on older survivors, and purposefully recruited breast cancer survivors aged 60 years or older with different characteristics, including race, treatment type, health insurance, and income. Inclusion criteria were cancer treatment at the UAB Comprehensive Cancer Center within the previous 5 years, English-speaking, physically and mentally able to participate, and residence in the Birmingham area.

Women were first contacted with a letter that described study purpose and requirements and included information on opting out. After the letter was sent, women were contacted by telephone to verify interest, confirm eligibility, and schedule the interview. Recruiters were from the UAB Recruitment and Retention Shared Facility (RRSF), a facility that assists UAB investigators with recruiting for clinical and behavioral research and with conducting qualitative and quantitative participant assessments.

Overall, 411 women were contacted by mail (Figure). Among 181 women reached by phone, 127 were screened to confirm eligibility. To achieve a diverse sample of women, recruiters determined eligibility on the basis of inclusion criteria and recruitment goals. Such non–mutually exclusive goals were originally set at 20 white and 20 African American women; 15 with chemotherapy, 15 with radiation, and 10 with surgery only; 20 with low income; and 30 with Medicare. Goals were reviewed and adjusted as recruitment progressed.

Figure.

Study flow diagram.

Among women screened, 75 were ineligible to participate, mainly because the time since treatment completion was more than 5 years (Figure). Of the remaining 52 eligible women, 42 participated.

Because medical and nonmedical personnel may potentially be tasked with discussing CoC with patients, we recruited a diverse group of staff participants, including physicians, oncology nurses, social workers, billing specialists, and patient navigators (nonmedical staff supporting patients through the care process [20, 21]). We initially contacted a list of potential participants compiled with the help of a patient navigator who provides support to patients with breast cancer. Additional referrals were obtained from interviewees.

An RRSF recruiter contacted participants via e-mail and scheduled the interview. Among 30 cancer center staff approached, 20 agreed to participate, including 2 surgeons, 2 medical oncologists, 2 radiation oncologists, 4 nurses, 3 social workers, 5 patient navigators, and 2 billing specialists. The 10 who did not participate (6 oncology nurses, 3 radiation oncologists, and 1 medical oncologist) either declined participation or could not be scheduled.

Interviews

All interview guides included a first part to evaluate the CoC information fliers (Supplement). Several versions of these fliers summarized the potential out-of-pocket costs of breast cancer care for a sample of older women in Medicare: These costs were measured by the amounts due through deductibles, coinsurance, or copayments. Fliers presented the information in 2 formats: costs of all medical care received by time since diagnosis (3- and 6-month intervals), and costs of specific treatments or all medical care received during those treatments (surgery, radiation, and chemotherapy). Costs ranged depending on the flier: For example, costs were on average about $2000 in months 0 to 3 and about $800 in months 10 to 12 from diagnosis, and more than $4000 for medical care during chemotherapy treatment (Supplement).

Survivors first reviewed one flier, and then answered 3 comprehension questions and a 13-item usability and appeal questionnaire (Supplement). The rest of the interview consisted of open-ended questions to further evaluate the fliers and to explore perspectives on the content and timing of the CoC conversation, and the most appropriate person to discuss CoC in the clinic setting. In general, survivors were asked the preferred conversation flow, with probes asking how they would like the provider to introduce the topic, and what kinds of topics they would like to hear or not to hear (Supplement).

The interview guide for cancer center staff consisted of open-ended questions about the flier and about CoC conversations (Supplement). This group was asked to imagine these conversations and what their essential elements should be.

Interviews with survivors were conducted in person in a nonclinical setting on the UAB campus. Interviewers included 2 RRSF interviewers and one of the authors (A.B.G.): All had previously conducted interviews or focus groups with breast and other cancer survivors, and 2 had previously worked as cancer patient navigators. Training in interview and focus group moderation is provided to RRSF personnel by the faculty of the UAB Division of Preventive Medicine. Additional training specific to the topic and interview guides of this project was provided by the principal investigator (M.P.). Before the interviews, the RRSF staff built rapport with survivors by using several techniques: personally meeting and greeting at scheduled appointment, introducing them to the interviewer and note-taker, and ensuring they were comfortable before the interviews began. Interviews with cancer center staff occurred in participants' offices, with a few exceptions. Two authors (M.P., A.B.G.) interviewed this group. A note-taker was present at all interviews: however, only interview transcripts were used in analysis, whereas notes were used during investigators' meetings to discuss progress or challenges with the interviews.

Statistical Analysis

Interviews were recorded and transcribed verbatim by an independent commercial transcription company. Transcripts were analyzed using inductive thematic analysis (22, 23) and NVivo 11 Pro software (QSR International). The purpose was to reveal common themes in the data about CoC conversations. Using a constant comparative method (24), 3 investigators (M.P., Y.S., I.H.) independently coded original transcripts to ensure intercoder agreement and consistency in coding. The coders met regularly to discuss the codes and emerging themes and to create a code book that was used to guide each subsequent step in the analysis (22).

Role of the Funding Source

The study was funded by the Robert Wood Johnson Foundation. The funding source had no input into methodology, analysis, authorship decisions, or manuscript preparation.

Results

The 42 survivor-participants, ranging in age from 60 to 79 years, were diverse in age, race, education, income, insurance status, and treatment received (Table 1). Of the 20 cancer center staff participants, 10% were male and 30% were African American. Age ranged from 28 to 74 years, and years on the job from 2 to 43 years.

Table 1. Characteristics of 42 Breast Cancer Survivor Participants

Survivors' Perspectives

Regarding the content of the CoC conversation, survivors highlighted 2 main elements: 1) reassurance: survivors expressed the need to be reassured about the ability to receive treatment regardless of cost, and 2) action: survivors expressed the need to include a discussion of payment options or resources available, so that it would be easier to afford what they perceived to be life-saving treatment (Table 2). Conversations should start with acknowledging patients' vulnerability, with such comments as “I know this is a difficult time for you” or “You've been diagnosed, and we know this is a traumatic situation for you; it's going to be difficult.” This introduction would be followed by a statement of reassurance, such as “But here are some resources to help ease your stress level.” The plan of action could include a discussion of payment plans to make it easier to pay for treatment, or an explanation of resources or financial assistance programs to which survivors could apply. Several survivors emphasized they did not want to hear that there was no help or support available or that the purpose of the CoC conversation was to collect money (Table 2).

Table 2. Illustrative Quotations From Survivors' Interviews*

Survivors generally believed that the best timing for the CoC conversation was after the visit in which they are told about the diagnosis but before treatment starts. One reason was because at diagnosis patients feel highly vulnerable and overwhelmed and would not be in a condition to fully appreciate cost information. Moreover, this information was felt to be more relevant once the treatment plan was established. Several participants also thought that the CoC conversation should be done when patients are ready for it or even initiated by patients, but should not be “forced” on them (Table 2).

Most survivors agreed that professionals, such as social workers, billing specialists, or financial counselors, would be the most acceptable personnel to discuss CoC. Many stated that they would not want physicians to discuss CoC, because these providers should focus on the treatment and they would have neither the information nor the time. Some also thought that patients would be embarrassed to talk about affordability problems with the doctors. The person charged with discussing CoC should be kind, compassionate, honest, up-front, and understanding of the vulnerability of cancer patients soon after diagnosis. He or she should be available to assist patients when and if needed. Moreover, this person should be prepared and competent, be able to combine cost information with the details of the patient's insurance plan and prescribed treatment, and be knowledgeable of resources available. One survivor also suggested that 2 people do the CoC conversation: one with expertise regarding insurance and the other who would facilitate access to available resources.

Cancer Center Staff's Perspective

In line with survivors' perspectives on the CoC conversation content, these participants highlighted the elements of reassurance and action (Table 3). Interviewees recognized that cost information could cause additional stress to an already vulnerable patient population; thus, they identified the need to provide this information with reassurance that treatment would be delivered and with a discussion of support and resources to help patients afford treatment. As a patient navigator put it, once the treatment is set and the cost is known, “we are moving forward”—moving toward making it possible for the patient to get that treatment. However, the CoC conversation is also an opportunity to help make an informed decision once information about treatment benefits, costs, and options to afford treatments are known. As one oncologist stated, “[I]f ultimately, it is impossible for them to take treatment because of finances or they make that as an educated choice knowing what all the resources are, that is their choice, but I wouldn't want to just necessarily throw a number out there and have them feel like they are going to have to write a check the next day for that amount.” Similar to survivors, several of these participants highlighted that the purpose of the CoC conversation was to guide patients and not collect treatment fees.

Table 3. Illustrative Quotations From Providers' Interviews*

Most cancer center staff agreed that the CoC conversation should occur after that first visit when patients are told they have cancer (Table 3). Some believed the conversation would be better received once the treatment decision was made. A few thought the conversation should occur before a treatment plan was chosen, because if not affordable, that plan would need to be reassessed (Table 3). Furthermore, whereas some staff envisioned addressing CoC with all patients or screening all for financial problems, a few, mainly the patient navigators, would be more comfortable “seizing the moment” and approaching the subject on the basis of cues from patients—for example, missed appointments or problems with insurance. These participants also felt that CoC conversations should occur multiple times over the cancer care continuum (Table 3). Many mentioned that patients are not concerned about costs at the beginning of treatment, but many become overwhelmed once they receive medical bills, or changes occur in insurance, employment, or family situations. Therefore, having CoC conversations multiple times would provide the opportunity to promptly link patients to resources and complete treatment.

Similar to survivors, these participants thought that social workers or similar figures would be most appropriate for CoC conversations, and agreed that doctors and nurses should not have these conversations, primarily because of lack of time and training. The requisites of the person in charge of CoC conversation include clinical knowledge and understanding of the patient's treatment plan, time to dedicate to the CoC conversation, good communication skills, and an existing relationship with the patient. Overall, the CoC conversation was thought to be a sensitive conversation that patients may not be comfortable with, and for which an established relationship with a trustful and compassionate person would be necessary. The CoC conversation person would also be knowledgeable of resources available and capable of providing what were perceived to be “quality” CoC conversations (Table 3).

Discussion

In a tertiary care cancer center in the southern United States, older breast cancer survivors and cancer center staff shared similar views about the content and timing of CoC conversations and the person to conduct them. Overall, participants agreed that these are sensitive conversations with the potential to increase the vulnerability of patients who face a life-threatening illness and potentially expensive treatments. Findings provide some guidance on how to implement CoC conversations in oncology settings.

Despite CoC conversations being a component of high-quality cancer care (1, 8) and increasing advocacy for cost disclosure (12, 18, 25–28), they are not common (7). Current conversations are usually brief and initiated by physicians, and are triggered by concerns about the costs of specific services or insurance coverage limitations (29–32). The CoC conversations envisioned by our participants had a specific structure and content.

Of note, our interviews started with reviewing fliers that contained estimates of out-of-pocket costs of breast cancer treatment. In this context, participants felt that conversations should not be limited to informing patients about these costs, but they should include the elements of reassurance and action—discussing how patients could cover those costs and afford the care they want. These elements are not systematically covered in current CoC conversations. For example, only 38% of conversations with patients with breast cancer included a discussion of cost-reducing strategies (31). Although reassuring patients and providing options could be challenging at institutions with fewer resources than ours, our participants and those of other studies reported that knowing costs up front is important (3, 5, 33–35), and in one study, physicians who disclosed costs of care were preferred to those who did not (36). As one of our survivor participants expressed, “[A]t least somebody thinks enough of me to discuss it [cost] with [me]. Just not go out there and open the mailbox, and the bills hit you in the face like that.”

Overall, physicians were not perceived to be appropriate to discuss costs with patients, mainly because of time constraints. This was perceived to be an activity not to be rushed, in some way distinct and distracting from their purpose of treating patients. This is in contrast with studies where most patients reported wanting CoC conversations to be with physicians (4, 35, 37). Compared with our study, these studies had a younger sample of respondents in different health care settings (35), or with different and more severe disease (4, 37). Thus, the perspectives of younger patients with different types of cancer, or in other health care settings, may differ from those of our participants. In nononcology settings, for example, younger and sicker patients were more willing to discuss costs with physicians than their counterparts (38). The patient–physician relationship plays a role: Participants who preferred physicians to talk about costs reported a good and trustful relationship with their oncologists. Others also found that trust in the physician would enhance patients' willingness to discuss costs (38). It is hard to conceive of physicians not being involved in CoC conversations if one of the goals is to present options to make treatment affordable.

Physicians' involvement may depend on the purpose of these conversations. For example, when treatment options are available and differ in anticipated costs to patients, the purpose would be to guide patients in the treatment decision, and physicians would be most appropriate to discuss cost and benefit information. When there is an obvious standard of care or there are no viable options, the purpose would be to guide patients to available payment options and internal and external resources, and other personnel could be most adequate to discuss these strategies. Our participants, despite mainly supporting this latter purpose of the CoC conversation, recognized that CoC conversations could lead to changing treatment plans once costs and options to help patients afford prescribed treatments were considered. Therefore, the question of who should discuss costs with oncology patients remains an empirical question and may depend on the circumstances of each patient's treatment options. Alternatively, more than one person could be designated to do CoC conversations. Different models and workflows should be tested to arrive at the most effective CoC conversation.

Our findings suggest that the medical and nonmedical personnel who would be discussing CoC with oncology patients should be trained on showing compassion and be considerate of patients' readiness and willingness to discuss costs, and on establishing a trustful relationship with patients. Given that CoC conversations are perceived to be best before treatment begins, it would be important to design workflows where the person designated to hold CoC conversations, especially nonmedical personnel, has one or more contacts of this type with patients soon after diagnosis. Findings also suggest that the person discussing CoC should be trained to be deeply integrated in the medical decision process and have thorough understanding of patients' recommended treatment plans as well as all options and resources available. Finally, the person discussing CoC should be trained on how to best communicate and provide counseling and guidance in this context.

Future studies should determine whether conversations should be initiated with all patients or whether some type of screening would be necessary. Some survivors believed that not all patients would want to discuss costs. However, providers pointed out that patients may experience CoC challenges not at the time of diagnosis but later in the care trajectory. Therefore, it is necessary to examine whether one conversation or several at different times along the cancer trajectory would be important and effective. Our findings suggest that effectiveness of CoC conversations should be measured by the patients' ability to complete treatment. Currently, CoC conversations may occur in response to nonadherence to treatment (2) and greater financial burden (39); it is not known whether having CoC conversations up front would prevent these adverse outcomes. Moreover, studies should determine whether these conversations would lead to lower costs for patients and the health care system.

Our study has limitations. It was conducted at only 1 institution and may not represent views of providers and survivors across the United States. In addition, we considered only breast cancer survivors who were older than 60 years. Their views may not reflect those of survivors of other cancer types, age group, or sex. The financial toxicity of cancer care may afflict these other populations differently: Breast cancer is not one of the most expensive types of cancer, and for the same type of cancer, younger patients on average have higher costs than older patients (40). Moreover, owing to the small sample, we could not examine the perspectives of survivors of different socioeconomic status, insurance, or treatment type. Finally, because survivors were a few years removed from diagnosis, recall of the time of treatment may have been compromised, and views may differ from those of patients going through treatment. In one study, for example, respondents undergoing chemotherapy were less likely to discuss costs than respondents not on active treatment (4).

In conclusion, the breast cancer survivors and cancer center staff whom we interviewed generally agreed that CoC conversations were sensitive but critical and should occur toward the beginning of treatment to discuss alternative treatment options, insurance coverage, and potential financial resources. Essential elements included reassurance that cost would not limit receipt of quality care, and discussion of an action plan. Future studies should investigate the best way to integrate these CoC conversations into current medical care to support patients in achieving the best care while reducing the costs and financial toxicity of cancer.

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† Deceased.

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Author Insight Video - Maria Pisu, PhD, and Margaret I. Liang, MD (2:38)

In this video, Maria Pisu, PhD, and Margaret I. Liang, MD, offer additional insight into the article, "Perspectives on Conversations About Costs of Cancer Care of Breast Cancer Survivors and Cancer Center Staff. A Qualitative Study."

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2019 American College of Physicians

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Supplement: Cost-of-Care Conversations |7 May 2019

Perspectives on Conversations About Costs of Cancer Care of Breast Cancer Survivors and Cancer Center Staff: A Qualitative Study Free

Abstract