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The quality of cancer patient experience: perspectives of patients, family members, providers and experts
  1. Edward H Wagner1,
  2. Erin J Aiello Bowles1,
  3. Sarah M Greene1,
  4. Leah Tuzzio1,
  5. Cheryl J Wiese1,
  6. Beth Kirlin1,
  7. Steven B Clauser2
  1. 1Group Health Research Institute, Seattle, Washington, USA
  2. 2Applied Research Program, Division of Cancer Control and Population Sciences, National Cancer Institute, Bethesda, Maryland, USA
  1. Correspondence to Edward H Wagner, Group Health Research Institute, 1730 Minor Ave, Suite 1600, Seattle, WA 98101, USA; wagner.e{at}ghc.org

Abstract

Background Anecdotes and limited evidence suggest that a significant percentage of cancer patients encounter troublesome problems in the course of their care.

Methods The authors collected data about barriers to and facilitators of high-quality cancer care and innovative solutions to improve quality from three sources: focus groups with patients, family members of cancer patients and providers; site visits to cancer care providers and organisations in three American communities; and expert interviews.

Results The authors' respondents consistently described a similar list of problems facing the individual with a suspicion or diagnosis of cancer and his/her family: delays in and lack of coordination of care, patient information gaps and passivity, inadequate attention to emotional and social problems, and difficulty accessing services because of inadequate insurance, limited financial resources or rural residence. The fragmentation and uncertain accountability of cancer care contribute to these issues. Respondents recommended linking patients with a care navigator or manager, using computer technology to better inform and support patients and connect providers, and reforming provider reimbursement to encourage more patient-centred care.

Conclusions Cancer patients and their families have urgent needs for information and support especially early in their course. To meet these needs, early cancer care must be better organised, integrated, and patient centred. The Institute of Medicine's Model for the Delivery of Psychosocial Services appears to provide a relevant guide to delivering cancer care that better meets patient and family needs.

  • Patient experience
  • quality of care
  • cancer
  • patient satisfaction
  • qualitative data
  • healthcare quality
  • patient satisfaction
  • qualitative research
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Introduction

Until recently, there has been a striking paucity of quantitative evidence about the quality of cancer care; especially from the perspectives of patients and families. Though more is known about the technical quality of care in the USA and Europe,1–4 several recent reports have called attention to deficiencies in patients' cancer care experiences.5–8 Surveys suggest that high percentages of cancer patients experience problems in their care. A British survey of over 65 000 NHS cancer patients found frequent difficulties with outpatient care (48–63%), coordination of care (18–33%) and understanding their treatment (15–23%).9 Similarly, a large American survey of colorectal cancer patients found high percentages (28–47%) reporting difficulties in receiving information, psychosocial support and care coordination.10

Under a contract from the National Cancer Institute (NCI), we sought more in-depth information about patient experience in receiving cancer care from three qualitative data sources: focus groups with cancer patients, their family members and providers; site visits to cancer care organisations in three US communities; and interviews with experts in cancer care. The goals of the study were to identify major barriers or challenges to receiving high-quality patient-centred cancer care and important factors and innovations that facilitate good care. In this paper, we summarise our findings across the three data sources and discuss implications for improving the quality of cancer care.

Methods

Conceptual framework

The Institute of Medicine's (IOM's) landmark report, Crossing the Quality Chasm, proposed that high-quality healthcare must avoid delays (timeliness); eliminate disparities in care and outcomes (equitability), medical and surgical errors (safety) and waste (efficiency); increase the consistency of care with scientific evidence (effectiveness); and value patients' needs and preferences (patient centredness).11 Additionally, optimal cancer care should provide planned and seamless transitions through the various stages of cancer care (coordination). We used these seven aims to code the data and looked for barriers and facilitators associated with achieving each aim.

Setting

Since we were limited to visits in three communities, we selected geographic areas for site visits and focus groups where we had colleagues who could help us organise data collection. We also targeted different regions of the country; diverse populations; and urban, suburban and rural communities. Within each area, we selected major cancer providers by reviewing patterns of cancer care and consulting with local colleagues. Site visits were made in Spokane and Southeastern Washington state, Worcester and Central Massachusetts, and Detroit, Michigan. Focus groups were conducted in Spokane and Detroit. The study was supported by the Cancer Research Network, an NCI-funded consortium of research organisations associated with non-profit, integrated delivery organisations.12

Data collection

Interviews with national experts

Methods for the expert interviews have been reported previously.13 Briefly, we conducted semi-structured qualitative telephone interviews with 23 key informants, including oncologists, academic researchers, cancer policy experts and others from the patient advocacy and clinical informatics communities. The key informants were identified from literature review and recommendations from NCI staff and project consultants. They were asked open-ended questions about barriers and facilitators to achieving high-quality cancer care and information technology or other innovations that might improve the quality of care. Interviews were transcribed, the content analysed using ethnographic software (Atlas.ti®) and major and minor themes identified. Two analysts independently coded each transcript; disagreements were resolved by discussion or a third review.

Site visits

The goals of the visits were to describe the care received by typical cancer patients; identify barriers to high-quality cancer care; and identify successful or promising local efforts to improve the quality of cancer care in the three areas. In each community, we tried to visit major cancer care providers (regional and comprehensive cancer centers and large oncology practices), smaller oncology practices viewed as innovative, primary care providers (PCPs) including federally funded community health centers (CHCs) and local patient advocacy organisations. We visited 21 different organisations and 17 clinical sites. At each organisation, we conducted group interviews with clinical staff. The study team, including an oncologist, one or two primary care physicians and health services researchers, visited each area for two full days. Each team member independently took notes on their findings on semi-structured forms. The notes were summarised into community case studies. Site visit team members reviewed the case studies and identified major themes through discussion and consensus.

Focus groups

We conducted focus groups in Spokane, Washington, and Detroit, Michigan. We planned to conduct four focus groups in each community with 10–12 participants each such as patients, family members, physicians and other providers. We recruited group participants by enlisting the help of local colleagues and organisations. All participants received cash incentives and a free meal. Despite different approaches to recruitment, very few physicians volunteered to participate, so the provider groups in each community included a consolidated group of physicians, nurses and other cancer care providers.

Patients were eligible if they were between the ages of 18 and 80; diagnosed with any cancer within the past 5 years; finished with initial cancer treatment; healthy enough to participate in the focus group without aid; and able to read, speak and understand English. Family members had to be between the ages of 18–80, married or related to someone diagnosed with cancer in the past 5 years, and unrelated to any of the patient focus group members. Table 1 shows the distribution of focus group participants. A single moderator facilitated all focus groups in both communities. Discussions were recorded and transcribed. We asked patient and family member participants to describe their (or family member's) diagnosis, treatment and follow-up experiences, as well as what was good and bad about the quality of cancer care in their community. We also asked them for ideas that might improve the quality of cancer care they received, with specific questions about IT. We analysed the content of transcripts using Atlas.ti® and the same methods as used to analyse the expert interviews.

Table 1

Characteristics of focus group participants

Before conducting the various data collection activities, we obtained IRB approval from the Group Health Human Subjects Review Committee.

Results

Barriers to and facilitators of high-quality cancer care

Tables 2 and 3 summarise the major barriers and facilitators to quality cancer care, respectively, that were identified in the three data collection activities. The right-hand column of each table shows barriers or facilitators that were heard from multiple sources and emerged as major themes throughout the study. Problems in care surfaced repeatedly in six general areas: unnecessary delays and lack of care coordination, under-informed patients, inadequate attention to psychosocial issues, socio-economic and geographic disparities in access, limited use of IT and a provider reimbursement system that discourages patient-centred care and may contribute to disparities.

Table 2

Barriers to high-quality cancer care

Table 3

Facilitators of high-quality cancer care

Delays and lack of coordination of early cancer care

Delays and a lack of coordination often made dealing with cancer an even more distressing experience for many patients and families. A focus group patient told this story:

‘I called to get the mammogram, and she like gave me a date like two or three weeks out. And I'm like, “Did you not hear me? I said this is to rule out breast cancer, you know. Do you think we should be waiting 3 weeks and then another week for results?” ’ Early cancer care is generally a sequential process whose quality depends upon the actions of each provider in the sequence. Consequently, accountability for the overall quality of the care sequence and the patient's well-being is uncertain. Patients and family members reported that the burden of identifying physicians, securing appointments, and communicating their medical information from provider to provider often fell to them. PCPs reported that the complexity of modern cancer care often made them feel unprepared to answer patient questions or coordinate care. As one primary care doctor put it: ‘we look to oncology as being primary care.’ But, site visits revealed that the initial contact with oncology may not occur until care planning and treatment are well underway.

Respondents suggested three strategies to reduce delays and improve care coordination14: patient navigation or care management, multi-disciplinary care planning, and electronic information transfer. In the literature, patient navigators are most often lay-persons who help disadvantaged patients obtain cancer screening and appropriate diagnostic evaluation.15 16 Some respondents suggested professional navigators with the knowledge to address clinical and logistical issues.17 18 In the words of a physician, ‘without a patient navigator, getting cancer care is like going to a foreign country without a dictionary’.

The site visits revealed little evidence of patient navigator interventions in community cancer care, especially in early phases of cancer care. Instead, multi-disciplinary treatment planning through tumour boards and related approaches was a commonplace in community or regional cancer centers. But, multi-disciplinary care planning often took place after patients had already received surgery and other treatments elsewhere in the community.

Our experts looked at clinical information systems as the most promising way to meet some of these needs,13 but site visits revealed very limited use of electronic medical record (EMR) systems in community oncology practice (discussed further below).

Patient information gaps

Both patients and providers agreed that patients needed to have appropriate information to participate effectively in their care.19 One focus group patient stated: ‘… the more I learned about it the more comfortable I was, particularly with choosing the option that you wanted to take.’ The amount, complexity and variable trustworthiness of information available to cancer patients via the internet were common complaints.20 21 Providers and voluntary agencies confirmed this problem as reflected in the questions asked by patients. Some expert informants felt that the passivity of under-informed, anxious patients contributed to many delays and problems in care. While essentially all oncology practices we visited provided educational counseling and/or materials, few systematically assessed patients' information needed or used tailored approaches to patient education. Our respondents mentioned three general facilitators: linking patients with a person who could provide or help them access information (eg, a navigator/care manager); increasing patient access to their medical records; and encouraging use of trustworthy computer-based programs. The latter two are discussed under IT below. A patient navigator with clinical knowledge, educational resources and counseling skills could empower and help patients and families get needed information. One expert said: ‘when a person is told she has diabetes …, a nurse sits down and goes over everything about being a diabetic, why can't we do that with cancer?’

Inadequate emotional and social support for patients and families

Patient/family focus groups confirmed how stressful a cancer diagnosis is to patients and their loved ones, but it was the key informants and providers in focus groups who mentioned how little social and emotional support was available in community practice. One focus group provider stated: ‘If we could screen them earlier, address those emotional issues well, their compliance with treatment and their ability to heal I think would be much better…but… most places don't have the team in place to do that.’ Experts pointed at perverse reimbursement policies that pay providers to ‘give treatments and not hold hands’. Patients and families also noted that psychosocial issues evolve, suggesting the importance of ongoing reassessment and support. While health professionals with psychosocial training and orientation are perhaps more visible in oncology practice than in other areas of adult medicine, their support was generally available only by referral. We saw very few instances of systematic psychosocial assessments and interventions in community oncology practice and none that supported patients in the immediate post-diagnostic period.

To address this concern, patients and family members mentioned the importance of family and peer support groups as well as a supportive, knowledgeable advocate. One patient focus group participant lamented that ‘I think there needs to be more of an effort in the medical community and maybe in the support community to provide advocates.’ Considerable evidence indicates that patients benefit from these relationships especially when delivered by nurses trained to provide counseling and care management services.17 18 22 23 Some experts advocated online peer support.24 25

Unequal access to cancer care

Disparities in access to and quality of cancer care troubled many of our respondents. Site visits to community health centers that serve uninsured and low-income patients indicated the challenges faced by their patients. One large urban CHC we visited reported that several of their uninsured patients had cancers that went undiagnosed because they couldn't gain access to specialist services to investigate suspicious symptoms or findings. Other visited CHCs had affiliations with local cancer centers that assured access to cancer care for all patients referred from the CHC regardless of insurance or citizenship status. Finally, we heard repeated worries that the high cost of chemotherapy for many patients, even those with insurance, was creating disparities in the treatment of many cancers based on financial resources.

In rural Washington and Massachusetts, long distances from treatment facilities confronted patients and families with difficult choices—for example, 70–100 mile round trips over roads that are often icy in winter or regimens that have to be adapted to the availability of professional personnel. Many provider respondents proposed variations of telehealth as a way to reduce the isolation of rural cancer patients, but we saw limited use of telemedicine on our visits to rural communities. We did see highly valued linkages (eg, telephone consultations) between rural oncologists and urban cancer centers.

Limited use of clinical information technology (IT)

Many providers and experts looked at IT to solve the problems in cancer care by facilitating appointment scheduling, reminding providers of the most effective care, reducing medication errors, giving patients access to information including their medical records, and facilitating data sharing among clinicians. As one expert said: ‘it will be malpractice to take care of people without EMR.’ Telemedicine and web-based electronic records could reduce the isolation of rural cancer patients.26 Despite the promise, several experts were concerned about the slow pace of EMR uptake in oncology practice,27 which was confirmed in our site visits. We saw very limited use of EMRs in community oncology practice except in large cancer centers.

IT solutions can directly address many needs of patients and families. Interactive web programs for families facing cancer can potentially meet other patient needs beyond information gathering. For example, the Comprehensive Health Enhancement Support System, mentioned by experts, has several well-tested modules geared to cancer patients.28 Comprehensive Health Enhancement Support System is now freely accessible on the internet, but we saw no evidence of its use in community practice.

Several experts and patient focus group participants indicated that patients have the right to access their medical records and would benefit accordingly. In some sites, patients were given a paper summary of their medical records and asked to carry it with them, but research suggests that this has not had much impact on care quality.29 Some experts advocated putting the information on a portable computer drive (ie, a flash drive). A patient offered: ‘it would be so nice if I had a little CD with my medical history on it maybe with some important x-rays.’ The advent of interoperable EMRs with patient portals could reduce these barriers. While the early experience with patient access to their EMRs is promising,30 it was not evident in the practice settings we visited.

Reimbursement discourages high-quality care

Several experts and community providers complained that reimbursement policies impeded providers from delivering high-quality cancer care, especially for underinsured patients. Complaints fell in two major categories: lack of adequate reimbursement for informational and supportive services, and high out-of-pocket costs that limited drug treatment options for many uninsured and lower income patients. Some experts suggested that risk-adjusted case or episode payments might be more effective than trying to revise fee-for-service schedules. Such payments may encourage greater attention to the informational, psychosocial, and care coordination needs of patients. But one expert was skeptical: ‘I don't think tinkering with the reimbursement system is gonna cure it….We're paying for an awful lot of care today that's not …. effective, it's not timely, it doesn't meet any of the…[IOM]aims.’

Discussion

To our knowledge, this is the first study examining cancer care quality from multiple perspectives. The themes that emerged from this study underscore the necessity of making cancer care more responsive to the spectrum of patients' needs. Although experts, providers, patients and family members each had unique concerns and suggestions for improvement, there was considerable agreement on major barriers and facilitators.

Our data have limitations. First, our samples were limited to the Northern USA. However, they still included a wide range of population groups and care systems. Second, we focused only on the early stages of cancer care from suspicion to end of treatment, since the transition at the end of treatment was the subject of intensive recent study by the IOM.7 Third, we limited our patient and family focus groups to English speakers, thus our discussion of disparities in cancer care likely under-represents the additional challenges non-English speakers face. But, most importantly the voices of experts and providers are more prominent since patient data collection was limited to two focus groups.

Implications for improving cancer care

Our research confirms that cancer patients often encounter problems in their care that contribute to their distress. While their neoplasms may be managed well, many patients confront barriers to effective and comforting care that could meet their needs as persons with a frightening and confusing new diagnosis. The barriers seem to be felt most acutely early in the cancer journey when patients and their loved ones face a sequence of decisions, tests and referrals often without a clearly accountable provider or medical home. Care fragmentation and ambiguous accountability contribute to delays, duplications and breakdowns in care and interfere with the receipt of useful information and social and emotional support. The problems in care may be greater for low-income, underinsured, and rural populations and appear to be exacerbated by provider payment methods that undervalue cognitive and supportive services.

In response to most of the problems identified, our respondents expressed a desire for an advocate or navigator to guide and support patients through the ‘maze’ of cancer diagnosis, staging and treatment planning. PCPs we spoke with expressed concern about their ability to play that role. With further training in selected aspects of the work-up and treatment of patients with common cancers and closer connections to oncologists, primary care teams may be best positioned to support the early cancer patient. A recent survey of PCPs indicated considerable PCP involvement in most phases of cancer care.31 It could be an oncology practice if patients were referred there immediately upon suspicion or diagnosis, but often in the USA they are not. Or it could be a navigator/care manager linked with primary care and oncologic specialities to provide information, skills training, emotional support and other services, but such roles still appear to be largely experimental or confined to large, integrated health systems. Greater use of information technology to improve communication among providers or inform and support patients could help, but the patients or providers we queried seem to feel that cancer patients and families above all want a clear person or place to go with their questions, fears and problems in care.

Once accountability for coordinating care can be clarified, what services would improve the care and experience of cancer patients? The IOM report, ‘Cancer Care for the Whole Patient’, examined the evidence on the care needs of cancer patients, beyond treatment of the cancer, and interventions to address the needs.6 The needs identified and recommended interventions correspond closely to the barriers and facilitators identified in our study. For instance, patients need help coping with emotions and the report recommends peer support programs and counseling/psychotherapy for individuals or groups.

The IOM report goes on to synthesise its findings in a Model for the Delivery of Psychosocial Health Services to guide the design and improvement of cancer care systems. The model assumes that effective cancer care depends upon a strong patient/provider relationship with effective communication, but doesn't indicate who that provider should be. Care needs and preferences are ascertained through regular assessment of patient distress and its sources and patient and family preferences and values that might influence decision making and care. The results of the assessment inform the development of a care plan that supports patients, links them to needed services and coordinates care. Patient support includes identifying strategies to meet needs and providing personalised information, emotional support, and help with managing health and illness (self-management). The high prevalence of symptoms and other challenges cancer patients face strongly suggests that they should routinely receive interventions that increase their self-management skills.32

The problems in care and recommendations for services we elicited from expert interviews, consumer and provider focus groups and site visits are remarkably consistent with the IOM model based largely on evidence. These data suggest that cancer patients would benefit from care systems that provide, from the first indication of cancer, personalised care including useful information, psychosocial support and services and assistance in navigating the healthcare system. We saw evidence of such care in some cancer centers we visited, but these serve a minority of patients and often weren't involved until weeks or months after a patient's diagnosis was made. How to link primary care with the various specialities involved in the diagnosis, staging and treatment of common cancers to assure the seamless delivery of these services must be made a research priority.

Acknowledgments

We are indebted to the project consultants: Drs Jerry Gurwitz, David Nerenz, Charles Safran, Hugh Straley and Jane Weeks for their advice. We also appreciate the participation of Drs Tony Back and Larissa Nekhlyudov in the site visits and Dr Andrea Altschuler's help with the qualitative analysis.

References

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Footnotes

  • Funding This work was supported by a contract (PO-263-MQ-516309) and grant (U19 CA79689) from the National Cancer Institute. There are no financial disclosures.

  • Competing interests None declared.

  • Ethics approval This study was conducted with the approval of the Group Health Human Subjects Review Committee.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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