Ensuring quality cancer care: a follow-up review of the Institute of Medicine's 10 recommendations for improving the quality of cancer care in America

Responding to growing concerns regarding the safety, quality, and efficacy of cancer care in the United States, the Institute of Medicine (IOM) of the National Academy of Sciences commissioned a comprehensive review of cancer care delivery in the US health care system in the late 1990s. The National Cancer Policy Board (NCPB), a 20-member board with broad representation, performed this review. In its review, the NCPB focused on the state of cancer care delivery at that time, its shortcomings, and ways to measure and improve the quality of cancer care. The NCPB described an ideal cancer care system in which patients would have equitable access to coordinated, guideline-based care and novel therapies throughout the course of their disease. In 1999, the IOM published the results of this review in its influential report, Ensuring Quality Cancer Care. The report outlined 10 recommendations, which, when implemented, would: 1) improve the quality of cancer care, 2) increase the current understanding of quality cancer care, and 3) reduce or eliminate access barriers to quality cancer care. Despite the fervor generated by this report, there are lingering doubts regarding the safety and quality of cancer care in the United States today. Increased awareness of medical errors and barriers to quality care, coupled with escalating health care costs, has prompted national efforts to reform the health care system. These efforts by health care providers and policymakers should bridge the gap between the ideal state described in Ensuring Quality Cancer Care and the current state of cancer care in the United States.     

Making the Evidentiary Case for Universal Multidisciplinary Thoracic Oncologic Care

The goal of this article is to provide an overview of the state of the evidence for, and challenges to, sustainable implementation of multidisciplinary thoracic oncology programs. Multidisciplinary care is much advocated by professional groups and makers of clinical guidelines, but little practiced. The gap between universal recommendation and scant evidence of practice suggests the existence of major barriers to program implementation. We examine 2 articles published in this issue of Clinical Lung Cancer to illustrate problems with the evidence base for multidisciplinary care. The inherent complexity of care delivery for the lung cancer patient drives near-universal advocacy for multidisciplinary care as a means of overcoming the heterogeneous quality and outcomes of patient care. However, the evidence to support this model of care delivery is poor. Challenges include the absence of a clear definition of “multidisciplinary care” in the literature, a consequent hodge-podge of poorly-defined examples of tested models, methodologically flawed studies, exemplified by the near-total absence of prospective studies examining this model of care delivery, and absence of scientifically sound dissemination and implementation studies, as well as cost-effectiveness studies. Against this background, we examined the results of a recent large single-institutional retrospective study suggesting the survival benefit of care within a colocated multidisciplinary lung cancer clinic, and an ambitious systematic review of existing literature on multidisciplinary cancer clinics. Better-quality evidence is still needed to establish the value of the multidisciplinary care concept. Such studies need to be prospective, use standardized definitions of multidisciplinary care, and provide clear information about program structure.     

The Affordable Care Act and access to care across the cancer control continuum: A review at 10 years

Lack of health insurance coverage is strongly associated with poor cancer outcomes in the United States. The uninsured are less likely to have access to timely and effective cancer prevention, screening, diagnosis, treatment, survivorship, and end-of-life care than their counterparts with health insurance coverage. On March 23, 2010, the Patient Protection and Affordable Care Act (ACA) was signed into law, representing the largest change to health care delivery in the United States since the introduction of the Medicare and Medicaid programs in 1965. The primary goals of the ACA are to improve health insurance coverage, the quality of care, and patient outcomes, and to maintain or lower costs by catalyzing changes in the health care delivery system. In this review, we describe the main components of the ACA, including health insurance expansions, coverage reforms, and delivery system reforms, provisions within these components, and their relevance to cancer screening and early detection, care, and outcomes. We then highlight selected, well-designed studies examining the effects of the ACA provisions on coverage, access to cancer care, and disparities throughout the cancer control continuum. Finally, we identify research gaps to inform evaluation of current and emerging health policies related to cancer outcomes.     

Integrating regional and community lung cancer services to improve patient care

Lung cancer is the leading cause of cancer death in Canada. The organization of health care services is central to the delivery of accessible, high-quality medical care and may be one factor that influences patient outcome. An exciting opportunity arose for clinicians to initiate the redesign of lung cancer services provided by three institutions in the Greater Toronto Area. This qualitative report describes the integrated lung cancer network that they developed, the innovation it has facilitated, and the systematic approach being taken to evaluate its impact. Available clinical resources were deployed to restructure services along patient-centred lines and to provide greater access to the specialist lung cancer team. A non-hierarchical clinical network was established that consolidates the lung cancer team. A multi-institutional and multidisciplinary tumour board and comprehensive thoracic oncology clinics are at its core. This innovative organizational paradigm considers all of the available services at each facility and aims to fully integrate specialists across the three institutions, thereby maximizing resource utilization. We believe that this paradigm may have wider applicability. The network is currently working to complete a current program of further service improvements and to objectively assess its impact on patient outcome.     

Patient‐centered,evidence‐based,and cost‐conscious cancer care across the continuum: Translating the Institute of Medicine report into clinical practice

In 2013, the Institute of Medicine (IOM) concluded that cancer care in the United States is in crisis. Patients and their families are not receiving the information that they need to make informed decisions about their cancer care. Many patients do not have access to palliative care and too few are referred to hospice at the appropriate point in their disease trajectory. Simultaneously, there is a growing demand for cancer care with increases in new cancer diagnoses and the number of patients surviving cancer. Furthermore, there is a workforce shortage to care for this growing and elderly population. The IOM's report, Delivering High‐Quality Cancer Care: Charting a New Course for a System in Crisis, outlined recommendations to improve the quality of cancer care. This article provides an overview of the IOM report and highlights the recommendations that are most relevant to practicing clinicians who care for patients with cancer across the continuum. The implementation of the recommendations in clinical practice will require better patient‐clinician communication, improved care coordination, targeted clinician training, effective dissemination of evidence‐based guidelines and strategies for eliminating waste, and continuous quality assessment and improvement efforts. CA Cancer J Clin 2014;64:408–421. © 2014 American Cancer Society.     

Minimizing the burden of cancer in the United States: Goals for a high-performing health care system

Between 1991 and 2015, the cancer mortality rate declined dramatically in the United States, reflecting improvements in cancer prevention, screening, treatment, and survivorship care. However, cancer outcomes in the United States vary substantially between populations defined by race/ethnicity, socioeconomic status, health insurance coverage, and geographic area of residence. Many potentially preventable cancer deaths occur in individuals who did not receive effective cancer prevention, screening, treatment, or survivorship care. At the same time, cancer care spending is large and growing, straining national, state, health insurance plans, and family budgets. Indeed, one of the most pressing issues in American medicine is how to ensure that all populations, in every community, derive the benefit from scientific research that has already been completed. Addressing these questions from the perspective of health care delivery is necessary to accelerate the decline in cancer mortality that began in the early 1990s. This article, part of the Cancer Control Blueprint series, describes challenges with the provision of care across the cancer control continuum in the United States. It also identifies goals for a high-performing health system that could reduce disparities and the burden of cancer by promoting the adoption of healthy lifestyles; access to a regular source of primary care; timely access to evidence-based care; patient-centeredness, including effective patient-provider communication; enhanced coordination and communication between providers, including primary care and specialty care providers; and affordability for patients, payers, and society.     

Reported referral for genetic counseling or BRCA 1/2 testing among United States physicians: a vignette-based study

BACKGROUND:

Genetic counseling and testing is recommended for women at high but not average risk of ovarian cancer. National estimates of physician adherence to genetic counseling and testing recommendations are lacking.

METHODS:

Using a vignette‐based study, we surveyed 3200 United States family physicians, general internists, and obstetrician/gynecologists and received 1878 (62%) responses. The questionnaire included an annual examination vignette asking about genetic counseling and testing. The vignette varied patient age, race, insurance status, and ovarian cancer risk. Estimates of physician adherence to genetic counseling and testing recommendations were weighted to the United States primary care physician population. Multivariable logistic regression identified independent patient and physician predictors of adherence.

RESULTS:

For average‐risk women, 71% of physicians self‐reported adhering to recommendations against genetic counseling or testing. In multivariable modeling, predictors of adherence against referral/testing included black versus white race (relative risk [RR], 1.16; 95% confidence interval [CI], 1.03‐1.31), Medicaid versus private insurance (RR, 1.15; 95% CI, 1.02‐1.29), and rural versus urban location. Among high‐risk women, 41% of physicians self‐reported adhering to recommendations to refer for genetic counseling or testing. Predictors of adherence for referral/testing were younger patient age [35 vs 51 years [RR, 1.78; 95% CI, 1.41‐2.24]), physician sex (female vs male [RR, 1.30; 95% CI, 1.07‐1.64]), and obstetrician/gynecologist versus family medicine specialty (RR, 1.64; 95% CI, 1.31‐2.05). For both average‐risk and high‐risk women, physician‐estimated ovarian cancer risk was the most powerful predictor of recommendation adherence.

CONCLUSION:

Physicians reported that they would refer many average‐risk women and would not refer many high‐risk women for genetic counseling/testing. Intervention efforts, including promotion of accurate risk assessment, are needed. Cancer 2011;. © 2011 American Cancer Society.     

Using navigators to improve care of underserved patients: current practices and approaches

BACKGROUND: Logistic, cultural, educational, and other barriers can impede the delivery of high-quality cancer care to underserved patients. Patient navigation services represent one innovation for addressing perceived barriers to care encountered by disadvantaged patients. In this report, the authors have 1) defined patient navigation, distinguishing it from other cancer support services; 2) described how programs are organized; and 3) discussed the need for research on program effectiveness. METHODS: Information was examined on navigation programs published in the scientific literature and on line. Qualitative research also was conducted, consisting of direct observation of patient care in cancer clinics with and without navigators in northern California, in-person interviews with personnel and patients in the clinics observed, and telephone interviews with navigators at four sites across the United States. RESULTS: The authors found that navigation services have been implemented at all stages of cancer care: prevention, screening, treatment, and survival. Navigators differ from other cancer support personnel in their orientation toward flexible problem solving to overcome perceived barriers to care rather than the provision of a predefined set of services. There are no rigorous demonstrations of the effects and effectiveness of navigation, although such studies are underway. CONCLUSIONS: Currently, patient navigation is understudied, and literature documenting its effects and effectiveness is scant. Rigorous studies are needed of the navigator role and program costs and benefits. Such studies will facilitate an assessment of program effectiveness, feasibility across a range of health care settings, and performance relative to alternative approaches for addressing barriers to care among the underserved.     

Evidence‐practice gaps in lung cancer: A scoping review

Lung cancer is a significant international health problem. Aligning clinical practice with evidence‐based guideline recommendations has the potential to improve patient outcomes. This scoping review describes evidence‐practice gaps across the diagnostic and management care pathway for lung cancer. We conducted searches of online databases Medline, PsychInfo, Cinahl and the Cochrane Library to identify studies published between 2008 and 2012. Of 614 articles screened, 65 met inclusion criteria. We identified seven evidence‐practice gaps: (1) delays in timely diagnosis and referral; (2) curative and (3) palliative treatments are under‐utilised; (4) older age and co‐morbidities influence the use of treatments; (5) the benefits of multidisciplinary team review are not available to all lung cancer patients; (6) psychosocial needs are unmet; and (7) early referral to palliative care services is under‐utilised. The scoping review highlighted three key messages: (1) there are significant challenges in the timely diagnosis and referral of lung cancer; (2) curative and palliative treatments, psychosocial support and palliative care are under‐utilised in lung cancer management; and (3) variations in treatment utilisation appear to be associated with non‐disease factors such as patient characteristics, provider practices and the organisation of health care services. Future research should focus on designing interventions to overcome variations in care.     

The requirements of a specialist Prostate Cancer Unit: a discussion paper from the European School of Oncology

The widely recognised benefits of a multidisciplinary approach to treating cancer may be particularly important in prostate cancer, where there are so many treatment options to choose from. It offers patients the best chance of receiving high-quality medical procedures administered by a team of specialists in prostate disease, which is able to tailor treatment and observational strategies to their needs, and ensure access to specialist counselling, supportive care and rehabilitation. This article proposes Prostate Cancer Units as the most suitable structures for organising specialist multidisciplinary care for patients at all stages, from newly diagnosed to advanced disease, including preventing and managing the main complications, whether physical, emotional or psychological, arising from the disease and its treatment. Following the German example with prostate cancer, the British example with urological malignancies and the European breast cancer units, this article proposes general recommendations and mandatory requirements for Prostate Cancer Units, with a view to laying the basis for a network of certified units across Europe. Such a network could help improve standards of care throughout the region, providing patients, practitioners and health authorities with a means of identifying high-quality units and providing a system of quality control and audit. The article is intended as a contribution to the debate within the European uro-oncologic community on the best way to organise prostate cancer care.     

Understanding and addressing social determinants to advance cancer health equity in the United States: A blueprint for practice,research, and policy

Although cancer mortality rates declined in the United States in recent decades, some populations experienced little benefit from advances in cancer prevention, early detection, treatment, and survivorship care. In fact, some cancer disparities between populations of low and high socioeconomic status widened during this period. Many potentially preventable cancer deaths continue to occur, and disadvantaged populations bear a disproportionate burden. Reducing the burden of cancer and eliminating cancer-related disparities will require more focused and coordinated action across multiple sectors and in partnership with communities. This article, part of the American Cancer Society's Cancer Control Blueprint series, introduces a framework for understanding and addressing social determinants to advance cancer health equity and presents actionable recommendations for practice, research, and policy. The article aims to accelerate progress toward eliminating disparities in cancer and achieving health equity.     

Attitudes and practices among pediatric oncologists regarding end-of-life care: results of the 1998 American Society of Clinical Oncology survey.

PURPOSE: In 1998, the American Society of Clinical Oncology (ASCO) surveyed its membership to assess the attitudes, practices, and challenges associated with end-of-life care of patients with cancer. In this report, we summarize the responses of pediatric oncologists and the implications for care of children dying from cancer. METHODS: The survey consisted of 118 questions, covering eight categories. All ASCO members in the United States, Canada, and the United Kingdom were mailed a survey, which was completed by 228 pediatric oncologists. Predictors of particular attitudes and practices were identified using stepwise logistic regression analysis. Potential predictors were age, sex, religious affiliation, importance of religious beliefs, recent death of a relative, specialty, type of practice (rural or urban, academic or nonacademic), amount of time spent in patient care, number of new patients in the past 6 months, and number of patients who died in the past year. RESULTS: Pediatric oncologists reported a lack of formal courses in pediatric palliative care, a strikingly high reliance on trial and error in learning to care for dying children, and a need for strong role models in this area. The lack of an accessible palliative care team or pain service was often identified as a barrier to good care. Communication difficulties exist between parents and oncologists, especially regarding the shift to end-of-life care and adequate pain control. CONCLUSION: Pediatric oncologists are working to integrate symptom control, psychosocial support, and palliative care into the routine care of the seriously ill child, although barriers exist that make such comprehensive care a challenge.     

Molecular Testing for Treatment of Metastatic Non‐Small Cell Lung Cancer: How to Implement Evidence‐Based Recommendations

The recent discovery of relevant biomarkers has reshaped our approach to therapy selection for patients with non-small cell lung cancer. The unprecedented outcomes demonstrated with tyrosine kinase inhibitors in molecularly defined cohorts of patients has underscored the importance of genetic profiling in this disease. Despite published guidelines on biomarker testing, successful tumor genotyping faces significant hurdles at both academic and community-based practices. Oncologists are now faced with interpreting large-scale genomic data from multiple tumor types, possibly making it difficult to stay current with practice standards in lung cancer. In addition, physicians’ lack of time, resources, and face-to-face opportunities can interfere with the multidisciplinary approach that is essential to delivery of care. Finally, several challenges exist in optimizing the amount and quality of tissue for molecular testing. Recognizing the importance of biomarker testing, a series of advisory boards were recently convened to address these hurdles and clarify best practices. We reviewed these challenges and established recommendations to help optimize tissue acquisition, processing, and testing within the framework of a multidisciplinary approach.

Implications for Practice:

Although several professional societies have incorporated biomarker testing recommendations into clinical practice guidelines for the diagnosis and management of non-small cell lung cancer (NSCLC), health care providers still face considerable challenges when establishing and implementing these standards. Developing and instituting protocols to ensure that all appropriate patients are tested for molecular biomarkers requires communication among the various specialists involved in the care of patients with NSCLC. This report provides insights into key challenges and recommendations for molecular testing of patients with metastatic NSCLC, summarized from a multidisciplinary team of experts spanning academic, community, and integrated health systems.     

Survivorship Care Plans: Prevalence and Barriers to Use

Survivorship care plans (SCPs) are intended to educate survivors and providers about survivors’ transition from cancer treatment to follow-up care. Using a survey of 23 cancer programs in the South Atlantic United States, we (1) describe the prevalence and barriers to SCP use and (2) assess relationships between SCP use and (a) barriers and (b) cancer program characteristics. Most cancer programs (86 %) reported some SCP use; however, less than a quarter of cancer programs’ providers had ever used an SCP. The majority (61 %) began using SCPs because of professional societies’ recommendations. Key barriers to SCP use were insufficient organizational resources (75 %) and systems for SCP use. We found patterns in SCP use across location, program type, and professional society membership. Most cancer programs have adopted SCPs, but use remains inconsistent. Efforts to promote SCP use should address barriers, particularly in cancer programs that are susceptible to barriers to SCP use.     

Lutetium-177 Prostate-Specific Membrane Antigen Therapy: A Practical Review

Prostate-specific membrane antigen is a transmembrane protein found predominately on prostate epithelium and is expressed at high levels in prostate cancer. In this review, we discuss the background, clinical data, patient selection, side effects, and necessary resources to deliver lutetium-177 prostate-specific membrane antigen in the research setting, or as standard of care if approved by the United States Food and Drug Administration. Targeted radionuclide therapeutics require understanding of fundamental principles of radiobiology and physics, and radiation oncologists and medical physicists are well-suited to play an integral role in their delivery and treatment response monitoring as key components of a multidisciplinary care team.     

Qualitative assessment of the multidisciplinary tumor board in breast cancer

The optimal care for breast cancers requires at a given time that several practitioners meet regularly around the file of the patient and attend a multidisciplinary meeting (MDM). Such an initiative is not recent. The multidisciplinary approach has been applied for several years in numerous comprehensive cancer centres, and noteworthy but not exclusively in the 20 regional cancer centres. Recommendations on the organization of the MDM were published by the National Institute of the Cancer and relieved by each regional cancer networks according to the Cancer Plan of 2003. Beyond these general recommendations, the purpose of this work was to analyse the impact of the MDM on the appraisal of the professional practices. Two retrospective surveys were carried out in 2005 and in 2006 at the regional cancer centre of Reims each of them during the first 6 months of the year. They lead to a double evaluation at the same moment of the organization of the MDM (delays, exhaustiveness of the file presentation, multidisciplinary approach, and modalities of application of the clinical recommendations by the MDM). The authors suggest, from the observed results, that MDM in breast cancer research may be strongly adapted for a fine and relevant assessment of the professional practices. The specific indicators presented in this study need further discussions and will probably evolve. However and considering the important improvement observed in the clinical daily practice following the presentation of these data within the Institute Jean Godinot, the authors suggest the implementation of a similar evaluation in a small number of voluntary health care centres in order to share various experiences and validate the process.     

Implementing Cancer Prevention into Clinical Practice

Cancer prevention has been associated with decreased rates of cancer incidence and increased survival. Cancer prevention, however, can have a greater impact if barriers to implementing cancer prevention into practice are removed and opportunities are both fostered and seized. The purpose of this article is to identify barriers and opportunities to cancer prevention in clinical practice and provide recommendations for the future. A multidisciplinary team participated in “The Future Directions Cancer Prevention and Control: Workforce Implications for Training, Practice and Policy” workshop on October 17–18, 2009 at The University of Texas MD Anderson Cancer Center in Houston, TX. During the meeting, the team discussed barriers and opportunities for the implementation of cancer prevention into clinical practice. Further data were collected from peer-reviewed journals and published government and cancer agencies reports. Several issues were identified: (1) The funding allocated to basic cancer prevention research and application is not optimal and less than that for cancer treatment; (2) participation in cancer prevention behaviors and screening practices are lower than desired, especially among the uninsured; (3) a shortage in healthcare professionals is a major challenge in meeting the future needs of cancer prevention; (4) demands on medical schools to balance increased enrollment, incorporate cancer prevention in an already crowded curriculum, and develop faculty are daunting; and (5) healthcare reforms in 2010 provide both opportunities and additional challenges for cancer prevention. Based on the current state of cancer prevention, we formed six recommendations: (1) additional funding for cancer prevention research with a focus on implementation into practice, (2) improved tracking of cancer prevention research funding and the outcomes associated with it, (3) continued monitoring of cancer prevention services participation with emphasis on closing the gap in health disparities, (4) financial and technical assistance to healthcare professional schools for incorporating cancer prevention into curricula, (5) assessment of the current state of technology in cancer prevention care, and (6) the use of effective multidisciplinary teams in cancer prevention care. Improved delivery of cancer prevention services can have a tremendous impact on cancer incidence and survival rates.     

Understanding the Attitudes and Beliefs of Oncologists Regarding the Transitioning and Sharing of Survivorship Care

Transitioning survivorship care from oncologists to primary care physicians (PCPs) is a reasonable alternative to oncologist-led care. This study assessed oncologists’ attitudes and beliefs regarding sharing/transitioning survivorship care. A prospective survey of oncologists within a regional cancer program assessing self-reported barriers and facilitators to sharing/transitioning survivorship care was disseminated. In total, 63% (n = 39) of surveyed oncologists responded. Patient preference (89%) and anxiety (84%) are key to transition of care decisions; reduced remuneration (95%) and fewer longitudinal relationships (63%) do not contribute. Oncologists agreed that more patients could be shared/transitioned. Barriers include treatment-related toxicities (82% agree), tumor-specific factors (60–90% agree) and perception of PCP willingness to participate in survivorship care (47% agree). Oncologists appear willing to share/transition more survivors to PCPs, though barriers exist that warrant further study. Understanding these issues is critical to developing policies supporting comprehensive survivorship care models that address both cancer and non-cancer health needs. The demonstrated feasibility of this project warrants a larger-scale survey of oncologists with respect to the transition of survivorship care to PCPs, to further inform effective interventions to support high-quality survivorship care.     

Addressing distress management challenges: Recommendations from the consensus panel of the American Psychosocial Oncology Society and the Association of Oncology Social Work

Distress management (DM) (screening and response) is an essential component of cancer care across the treatment trajectory. Effective DM has many benefits, including improving patients' quality of life; reducing distress, anxiety, and depression; contributing to medical cost offsets; and reducing emergency department visits and hospitalizations. Unfortunately, many distressed patients do not receive needed services. There are several multilevel barriers that represent key challenges to DM and affect its implementation. The Consolidated Framework for Implementation Research was used as an organizational structure to outline the barriers and facilitators to implementation of DM, including: 1) individual characteristics (individual patient characteristics with a focus on groups who may face unique barriers to distress screening and linkage to services), 2) intervention (unique aspects of DM intervention, including specific challenges in screening and psychosocial intervention, with recommendations for resolving these challenges), 3) processes for implementation of DM (modality and timing of screening, the challenge of triage for urgent needs, and incorporation of patient-reported outcomes and quality measures), 4) organization—inner setting (the context of the clinic, hospital, or health care system); and 5) organization—outer setting (including reimbursement strategies and health-care policy). Specific recommendations for evidence-based strategies and interventions for each of the domains of the Consolidated Framework for Implementation Research are also included to address barriers and challenges.