Redesigning Cancer Care Delivery: Views From Patients and Caregivers

Abstract

Introduction:

Cancer is a leading cause of death in the United States. Although treatments have improved, patients and caregivers continue to report significant gaps in their care. The objective of this study was to examine the views of patients and caregivers on their experiences with current cancer care delivery and identify key strategies to improve the delivery of care.

Methods and Materials:

Semistructured interviews were conducted with 75 patients and 45 caregivers across the United States. The interviews were recorded, transcribed, and analyzed using constant comparative method of qualitative analysis.

Results:

Participants reported multiple gaps in care delivery, including barriers in health communication with health care providers, lack of elucidation of care goals, lack of care coordination, and challenges in accessing care. Participants identified that greater use of nonphysician providers and alternative formats, such as telephone-based care and home and community-based care, would narrow these gaps.

Conclusion:

Understanding patients’ and caregivers’ experiences with gaps in cancer care delivery can inform cancer care delivery redesign efforts and lead to targeted interventions that result in patient-centered and family-oriented care.

INTRODUCTION

This year, 1.6 million people in the United States will be diagnosed with cancer, and an expected 500,000 will die of the disease.¹ Although cancer remains one of the leading causes of disease and death, many patients and their caregivers continue to lack critical services. Although laudable efforts are under way to promote personalized cancer treatment, large gaps in care delivery remain, including accurately educating patients regarding their prognosis^2-6 and self-management of symptoms.^7-9 In addition, there is opportunity to improve navigation and psychosocial support.^10,11 Furthermore, these care delivery gaps are more pronounced for vulnerable patient populations.^12-14

Care delivery innovations can improve these deficiencies. The oncology patient-centered medical home, for example, improves care effectiveness and efficiency.^15,16 Other efforts, such as the Oncology Care Model, financially reward delivery of coordinated, high-quality cancer care.^17,18 We similarly proposed solutions to improve care delivery that include (1) enhancing the provider-patient relationship through use of alternative staff (eg, lay health workers) to provide services; (2) providing services in alternative formats (eg, via phone); and (3) providing services in community locations outside of the clinical setting.¹⁹ Despite the growing need for cancer care redesign, there is little research in this area. To our knowledge, no study describes patients’ and caregivers’ perspectives on how to best redesign cancer care delivery.

The goal of this study was to explore the perspectives of a diverse sample of patients and their caregivers on the current state of cancer care and identify key strategies to redesign care delivery. The study was framed by the Quality-of-Care Framework by Donabedian,²⁰ which outlines three criteria to improve the quality of care: structure, processes, and outcomes. On the basis of this conceptual framework, our aims were to assess patient and caregiver views on care delivery and their acceptance of novel ways to expand care services, including delivery by nonphysician providers, non–face-to-face formats, and care provision in home- and community-based locations.

METHODS AND MATERIALS

The study was conducted across five US sites: three large, private oncology practices (one in the Northwest, one in the Southwest, and one in the Midwest) and two large academic cancer centers (one in the Southwest and one in the Northeast). Adult patients (> 18 years of age) who had received cancer care for ≥ 3 months and within at least 1 month of the study (to ensure sufficient personal experience with cancer care) and their caregivers were eligible to participate. Recruitment strategies involved (1) mailings to oncology providers asking them to refer patients and caregivers who met inclusion criteria; (2) waiting- and reception-room flyers; and (3) mailings to 275 randomly sampled households asking interested patients and caregivers (family members, caretakers, or other support) to contact the principal investigator.

Patients and caregivers who met inclusion criteria received information about the study’s purpose and time commitment and were invited to participate in a 60-minute interview. On consent, two investigators (M.P. and D.M.) conducted each interview using a semistructured interview guide (Appendix Table A1, online only). Participants discussed current cancer care and were provided with an overview of cancer care delivery redesign options. All eligible patients and caregivers spoke English; however, native languages included Spanish, Mandarin, and Hindi. The Stanford University Institutional Review Board approved the study.

Semistructured interviews were digitally recorded, transcribed, and imported into qualitative data management software (Atlas.ti, version 6.0; Scientific Software Development, Berlin, Germany). Two investigators (M.P. and D.M.) read the transcripts and created codes for key points within the text using an iterative process. Two trained coders independently coded the transcripts, discussed discrepancies, and modified the codebook with the principal investigator (M.P.). A Cohen’s kappa using a randomly selected sample (33%) of quotes from each of the codes to measure consistency between coders was calculated, with scores ranging from 90% to 95%, suggesting excellent interrater reliability.²¹ Transcripts were thematically analyzed to identify 299 unique excerpts pertaining to care delivery. After ongoing and iterative analysis, consensus was reached among multiple investigators with respect to thematic saturation. Analysis was based on grounded theory (thematic analysis) and performed using the constant comparative method of qualitative analysis.^22,23

RESULTS

Interviews were conducted separately with 75 patients and 45 caregivers (Table 1). Domains and themes are discussed in the following paragraphs.

Table 1.

Participant Demographic Characteristics (n = 120)

Domain 1: Cancer Care Deficiencies

Patients and caregivers articulated their desires to better understand the consequences of treatment choices on quality of life and prognosis (Table 2). Patients emphasized the importance of engaging family in their medical decision-making process while preserving their personal views. Specifically, some expressed difficulty in speaking truthfully with their doctors because their families had preestablished views of what the right decisions were. Others expressed that family support enhanced their ability to communicate openly with their clinical teams. Overall, patients and caregivers reported satisfaction with care but noted deficiencies with the way care was delivered. Major themes are identified are as follows.

Table 2.

Sample of Quotes From Participants Regarding Cancer Care Delivery

Theme 1: Poor patient-doctor communication within and outside of scheduled visits

Patients and caregivers expressed difficult communication with their doctors during and after clinic visits. One patient stated that the volume of information provided in the first visit was a barrier to quality communication.

I heard the word cancer and it was Charlie Brown’s teacher. I speak English but I wasn’t hearing what the doctor said. There was so much information. There wasn’t enough time to ask or would I even understand the answer to things that I really needed to ask. Later visits, even worse, because there was so much to talk about like my vomiting. It was hard to bring anything else up. You don’t want a rushed answer about how long you are going to live.

Patients and caregivers also expressed concerns with interrupting a provider’s day to obtain results for tests. One patient stated,

I never know what my labs are. I ask to see them but I don’t want to hold the doctor. I don’t wanna bother them.

A caregiver similarly stated,

We try to not call the office….Only when we need to…but we feel like we need to talk to someone but don’t want to be those problem people who call all the time.

One patient reported,

I have a great relationship with my oncologist. She makes it easy to ask questions and spends as much time as needed with me. You have to wait an hour to see her but then she takes time to make sure all my questions are answered.

Theme 2: Perceived inadequate explanations of prognosis and challenges in initiating conversations around prognosis

Patients and caregivers repeatedly reported inadequate comprehension of their prognosis. One patient reported,

I want to ask, like, do I need to get my affairs in order. Am I going to die? You want the doc to bring it up almost so you don’t have to. But when he don’t, then, it’s on us to ask and I don't know how to bring it up.

One caregiver stated,

We saw my mother suffer and wanted to stop treatment. We didn’t want to upset the oncologist because he said “4 rounds of treatment” so we pushed her. It was hard to bring it up in a visit when she was already on schedule to get treated.

Another caregiver similarly reflected,

I see what treatments are doing to her [wife] and not sure she can take it even if it’s helping the cancer but we don’t know how to tell our doctors that or ask it. We think that if it wasn’t working she would stop but we haven’t had that conversation yet so we think it’s working but don’t know.

One caregiver had a dissenting view to this theme and stated,

My mom’s doctor told us her prognosis on the first day. It was clear. We had somewhere between 4-6 months. We all remember it clearly because it was such a shock to hear. But, we knew she had limited time and it made it easier once we could talk about all that hard stuff that we had been avoiding.

Theme 3: Difficult coordination of various services needed for cancer care

Patients and caregivers expressed concern about coordination and reported consistent difficulty with scheduling appointments, obtaining health records, insurance authorization, and disability. One patient stated,

I don’t know how to schedule my life much less radiation which is at one place and chemotherapy which is at another and labs yet another. I need to schedule rides to get to all these places and it feels like I am relying way too much on friends especially if I forget an appointment or if the appointment is cancelled.

Theme 4: Inconvenient locations for care

Patients and caregivers discussed difficulty traveling to appointments, especially when they experienced symptoms. One patient stated,

I am scared to walk the stairs outside of my apartment but I have to once a week. My family puts me in a chair and carries me out but I wish that there were some other way to get the chemotherapy. I ask to be at home as much as possible but they say it is hard to do this.

One caregiver stated,

These visits are in places that are far. The traffic is really hard because it can take up to an hour to get there. My mother is so nauseated and the car ride makes it worse plus when we get there we have to wait a long time which makes it even worse for her and for us.

One patient, however, did not mind the travel because of other aspects of the clinic:

I like seeing my new and old friends while I get my treatments. It makes me feel like I am not going through this alone and is a little nice to socialize every now and again.

Domain 2: Possible Solutions to Improve Cancer Care

Alternative providers: Nonmedical personnel as part of the care team could provide more patient-centered services, such as education, guidance, and general support, to patients and caregivers

Patients and caregivers emphasized that counseling, especially regarding diagnosis or treatment, could be improved by using, as adjuncts or replacements, nonmedical professionals (eg, peer support, community health workers; Table 3). Patients and caregivers expressed that alternative personnel could overcome some communication challenges expressed in Theme 1 by enhancing patient-provider communication outside of the clinic setting. Patients and caregivers thought that nonphysicians could build a relationship outside what traditional medical care provides. One patient said,

Table 3.

Sample of Quotes From Participants Regarding Solutions for Care Delivery

It’s often my friends in the waiting room who are able to really listen, ask questions that make me think about things in a different way….They help me to think more about what I want for my life in a way that my nurses and doctors can’t. Doctors and nurses and such are really good at knowing what medicine to give but the idea of bouncing my thoughts off others to think about being a person with cancer instead of a cancer patient is a good idea.

One caregiver expressed,

It helps to have someone that’s not a doctor to talk about stuff with. My dad always said he would talk to someone more like a person rather than a doctor because there’s something different about talking to a friend who isn’t a doctor. Then, that person can help to get my dad to think about how to bring stuff up that he may not bring up with the doctor.

Patients and caregivers expressed that alternative health personnel can improve perceived poor doctor-patient communication regarding prognosis and goals of care. One patient said,

This person will help focus more on things that are important to us as people not as patients. They have the time to really find out what fears we have and what is going on rather than rushing it in one visit.

Home- and community-based locations: In-home and community-based locations for care delivery would enhance patient convenience and reduce burden on caregivers and potentially improve quality of life for patients

Patients and caregivers strongly encouraged home-based services as a solution to current care delivery challenges. Some patients shared positive experiences with home visits and infusion centers in community-based locations. Although none had used a retail-based clinic for care, some had heard about them and thought they would be feasible and convenient. Some caregivers shared safety concerns. One stated,

In theory, it’s nice. But, it would have to be safe and there needs to be a doctor close by in case something were to happen.

Alternative communication formats: Non–face-to-face formats for care would increase access, reduce burden, and potentially enhance quality of life for patients and caregivers

Patients and caregivers were enthusiastic about using non–face-to-face formats for care delivery as a solution to overcome the current care delivery challenges, specifically regarding poor communication and inconvenient locations of care delivery. Patients and caregivers shared positive experiences they had with telephone-based care, especially around symptom management.

You can do a lot more and allow more home time for us if there are other ways to talk to the doc and nurse instead of having to go to the clinic. I like the idea of having my symptoms taken care of by phone.

Other options included e-mail, text messaging, websites, and phone-based applications. Some patients used websites to obtain personalized information about their cancer and symptoms. One patient described communicating with her provider to discuss symptom management by e-mail:

I live a ways from the clinic and email my doctor about symptoms. It’s a convenient way to get my needs met.

DISCUSSION

To our knowledge, ours is the first multisite qualitative study of patients with cancer and caregivers to better understand the current challenges they encounter and to identify patient-centered solutions that may benefit them the most. Study participants reported four primary gaps in cancer care delivery, including poor doctor-patient communication, insufficient attention to conversations about prognosis, lack of care coordination, and lack of access to care locations. Despite efforts to improve patient-provider communication regarding goals of care and symptom management,^8,9,24-27 patients and caregivers noted persistent deficiencies,^7,28,29 consistent with previous studies.^2,5,10,11 Study participants identified three practical solutions to reduce these care gaps, including use of (1) nonphysician health personnel (eg, community health workers, patient navigators); (2) alternative care formats (eg, telephone-based care); and (3) extending community-based care locations (eg, home visits, chemotherapy delivery). These themes and solutions map to the adapted Donabedian framework as detailed by Starfield³⁰ (Appendix Fig A1, online only). Each health system has a structure (or capacity), with characteristics that enable provision of care and influence processes (or performance) that lead to various aspects of health status. These components interact with, and are determined by, community resources, individual behavior, and the environment in which the health system exists.

Our findings reveal opportunities for improving cancer care from patient and caregiver perspectives and suggest that incorporating nonphysician health personnel into cancer care delivery is not only acceptable but also a patient-preferred solution. Although studies have examined the quality of care provided by lay health community workers in preventive cancer care delivery,^31,32 no current studies have shown the benefit of these care providers in assisting with serious illness conversations or symptom assessment techniques. Research is needed to determine the effectiveness of these nonphysician personnel in these aspects of care delivery.

Care delivery in alternative formats was also an approach that was desired and used by some patients and caregivers. Patient and caregivers expressed a need for alternative communication options to enhance patient-provider communication (eg, e-mail, telephone, text messaging). Alternative payment models now financially support these previously unreimbursed alternative format approaches.^17,33

Patients and caregivers also strongly expressed cancer care delivery in alternative locations, specifically locations closer to homes and communities. However, these changes require a paradigm shift in current care delivery and a change in reimbursement. The redesign of organizations will need to support workforce, infrastructure, and technology to enable delivery of care in locations closer to and in patients’ homes. Currently, retail clinics exist and are providing basic primary care functions.³⁴ With comprehensive oversight, these clinics could expand to provide cancer-related care, enhancing convenience and quality of life for patients who wish to remain close to home. The current reimbursement trend to reward value-based cancer care could also facilitate this goal.

Our findings must be interpreted in the context of our patient and caregiver population, representing a limited sample receiving care in US cancer clinics. However, our sample size for this qualitative study was large enough to reach saturation (the point when no new themes emerge from further interviews).^35,36 In addition, we recruited participants from a variety of geographic areas, including large cancer institutes and private-practice oncology clinics. We acknowledge, however, that these findings may not be generalizable to patients receiving care in other settings or outside of the United States. Furthermore, we focused on adult populations; therefore, our conclusions may not be applicable to pediatric populations. We also recruited only English-fluent participants. It is likely that replicating this study with patients and caregivers with limited English proficiency may identify other barriers to care. Finally, considerations of cost were not explored in this analysis.

To our knowledge, despite limitations, our findings represent the first study to assess patient and caregiver perspectives on current cancer care delivery and opportunities to inform cancer care redesign. As clinicians, researchers, and policy makers consider ways to radically transform our cancer care delivery system, the perspective of families and patients is critical to ensure the design of a system that meets the needs of these stakeholders. Among many populations, cancer care deficiencies are pervasive, and these gaps in care may be more pronounced for vulnerable patient populations. The patients and caregivers in our study provided details about their current experiences with cancer care inadequacies and supported opportunities to address these deficiencies through alternative providers, non–face-to-face formats, and alternative locations for care. These solutions should be evaluated for their effectiveness in future studies.

In conclusion, our findings are a rich reflection of patient and caregiver perspectives regarding current cancer care delivery and approaches to improve care delivery. The insights gained can lead to innovations in cancer care delivery that may achieve improved patient experiences and outcomes while placing attention on health care utilization.

Appendix

Table A1.

Sample of Interview Questions

Fig A1.

Conceptual model of redesigning cancer care delivery themes and solutions. Adapted from Starfield.³⁰

AUTHOR CONTRIBUTIONS

Conception and design: Manali I. Patel, Arnold Milstein

Collection and assembly of data: Manali I. Patel, Vyjeyanthi S. Periyakoil, David Moore

Data analysis and interpretation: Manali I. Patel, Vyjeyanthi S. Periyakoil, Douglas W. Blayney, David Moore, Andrea Nevedal, Steven Asch, Tumaini R. Coker

Manuscript writing: All authors

Final approval of manuscript: All authors

Accountable for all aspects of the work: All authors

AUTHORS' DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST

Redesigning Cancer Care Delivery: Views From Patients and Caregivers

The following represents disclosure information provided by authors of this manuscript. All relationships are considered compensated. Relationships are self-held unless noted. I = Immediate Family Member, Inst = My Institution. Relationships may not relate to the subject matter of this manuscript. For more information about ASCO's conflict of interest policy, please refer to www.asco.org/rwc or ascopubs.org/journal/jop/site/misc/ifc.xhtml.

Manali I. Patel

Consulting or Advisory Role: Castlight Health, Celgene

Vyjeyanthi S. Periyakoil

No relationship to disclose

Douglas W. Blayney

Consulting or Advisory Role: Clinical Oncology Advisory Group, Physician Resource Management, Bristol-Myers Squibb, Carevive Systems, Oncothyreon, Varian Medical Systems

Research Funding: Amgen, BeyondSpring Pharmaceuticals

David Moore

No relationship to disclose

Andrea Nevedal

No relationship to disclose

Steven Asch

No relationship to disclose

Arnold Milstein

Honoraria: Davita Rx, Frazier Healthcare Partners

Consulting or Advisory Role: Amino Advisory Board, LandmarkHealth

Research Funding: Evolent Health

Patents, Royalties, Other Intellectual Property: Over-the-counter medication (Inst)

Tumaini R. Coker

No relationship to disclose