In the United States, approximately 14 million people have had cancer and more than 1.6 million new cases are diagnosed each year. However, more than a decade after the Institute of Medicine (IOM) first studied the quality of cancer care, the barriers to achieving excellent care for all cancer patients remain daunting. Care often is not patient-centered, many patients do not receive palliative care to manage their symptoms and side effects from treatment, and decisions about care often are not based on the latest scientific evidence. The cost of cancer care also is rising faster than many sectors of medicine--having increased to $125 billion in 2010 from $72 billion in 2004--and is projected to reach $173 billion by 2020. Rising costs are making cancer care less affordable for patients and their families and are creating disparities in patients' access to high-quality cancer care. There also are growing shortages of health professionals skilled in providing cancer care, and the number of adults age 65 and older--the group most susceptible to cancer--is expected to double by 2030, contributing to a 45 percent increase in the number of people developing cancer. The current care delivery system is poorly prepared to address the care needs of this population, which are complex due to altered physiology, functional and cognitive impairment, multiple coexisting diseases, increased side effects from treatment, and greater need for social support. Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis presents a conceptual framework for improving the quality of cancer care. This study proposes improvements to six interconnected components of care: (1) engaged patients; (2) an adequately staffed, trained, and coordinated workforce; (3) evidence-based care; (4) learning health care information technology (IT); (5) translation of evidence into clinical practice, quality measurement and performance improvement; and (6) accessible and affordable care. This report recommends changes across the board in these areas to improve the quality of care. Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis provides information for cancer care teams, patients and their families, researchers, quality metrics developers, and payers, as well as HHS, other federal agencies, and industry to reevaluate their current roles and responsibilities in cancer care and work together to develop a higher quality care delivery system. By working toward this shared goal, the cancer care community can improve the quality of life and outcomes for people facing a cancer diagnosis.

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Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis

Over the past several decades, the number of cancer survivors has increased dramatically as a result of improved early detection of first malignancies and effective therapies. There are more than 13 million cancer survivors in the United States today.1 This number is expected to reach 18 million by 2022.1 These data underscore the public health magnitude of cancer survivorship and the importance of efforts to characterize and address the health concerns of cancer survivors.

Although the cancer survivorship population is heterogeneous, many survivors face distinct and serious health care issues. Cancer survivors are at increased risk for long-term morbidity and premature mortality, related directly to the cancer itself, to pre-existing comorbidities, and to exposure to therapy. The risk-benefit ratios for many of the methods of disease prevention, screening, and treatment may be shifted in survivors because cancer- and treatment-related changes can lead to premature development of age-related changes, atypical presentations of common health conditions, an increased risk of developing these health conditions, and poor response to treatments that are usually effective for these conditions. Additionally, the higher prevalence of coexisting comorbidities in the elderly may become further exacerbated because of treatment. As a result, the many patients who become survivors will require preventive and general medical care subsequent to their cancer-related care.

Cancer survivors are an important group to receive risk assessment and prevention services, and oncologists are increasingly providing counseling and services to that group. In a 2004 survey of American Society of Clinical Oncology (ASCO) members, roughly three quarters of oncologists said they believe they should be involved in the ongoing care of patients who are survivors of cancer, including general health maintenance, screening, and prevention.2 However, only 60% said they feel comfortable providing these services.2 The survey also suggested that oncologists define their role in cancer prevention and risk assessment quite broadly and beyond providing services in their own practices.2,3 As more patients with cancer transition back to primary care, many groups have identified the need for greater coordination of care and increased attention to health promotion and disease prevention in survivors. These organizations are looking to oncology professionals to develop a coordinated strategy for providing follow-up medical care to the growing population of cancer survivors.

As the leading medical professional oncology society committed to conquering cancer through research, education, prevention, and delivery of high-quality patient care, ASCO is committed to improving the care of cancer survivors. ASCO first established a Cancer Survivorship Task Force in 2004 to address the growing issues related to cancer survivorship. In 2005, the task force led the ASCO partnership in cosponsoring a symposium on cancer survivorship with the Institute of Medicine (IOM) to chart a course for care of cancer survivors and fill gaps in patients' long-term care. This workshop focused on implementation of the 10 recommendations contained in the IOM report “From Cancer Patient to Cancer Survivor: Lost in Transition.”4 An outcome of the symposium was the prioritization of several key ASCO initiatives, including development of cancer treatment plan and summary templates, establishment of the Patient and Survivor Care Track at ASCO annual meetings, development of a survivorship guideline addressing fertility preservation, inclusion of survivorship topics in the ASCO core curriculum, and publication of numerous survivorship articles in ASCO publications. Additionally, ASCO partnered with the National Coalition for Cancer Survivorship to establish the Cancer Quality Alliance in response to the IOM call for public-private partnerships to monitor and improve the care that survivors receive.

In 2011, ASCO established the Cancer Survivorship Committee to provide long-term leadership and oversight of its growing number of cancer survivorship activities. In the past year, the committee has been working with appropriate groups within and outside of ASCO to enhance the quality and quantity of initiatives addressing cancer survivorship. The committee has developed a comprehensive agenda to assist ASCO members in the delivery of quality survivorship care. The objective of this statement is to present ASCO recommendations for improving the care of cancer survivors and the role of ASCO in this important endeavor, as envisioned by the Cancer Survivorship Committee. Specific efforts will be concentrated on developing guidance for oncology care providers on the clinical management of cancer survivors, increasing collaboration between oncologists and primary care providers (PCPs) in the provision of cancer survivorship services, improving health professional education and training, increasing patient and family education and self-advocacy, supporting research on cancer survivorship, and promoting policy change to ensure cancer survivors have access to appropriate health care services, including improving the payment environment so that adequate, uniform reimbursement for prevention counseling, interventions, and therapies is provided by payers.

It is important to note that ASCO endorses the National Coalition for Cancer Survivorship definition of a cancer survivor as starting at the point of diagnosis. However, for the purposes of this discussion, a functional definition of survivorship will be used, focusing on individuals who have successfully completed curative treatment or those who have transitioned to maintenance or prophylactic therapy (eg, individuals receiving hormonal therapy after cytotoxic therapy for breast cancer).

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American Society of Clinical Oncology Statement: Achieving High-Quality Cancer Survivorship Care

Background: The National Institute for Health and Care Excellence recommends the use of generic
preference-based measures (GPBMs) of health for its Health Technology Assessments (HTAs). However,
these data may not be available or appropriate for all health conditions.
Objectives: To determine whether GPBMs are appropriate for some key conditions and to explore
alternative methods of utility estimation when data from GPBMs are unavailable or inappropriate.
Design: The project was conducted in three stages: (1) A systematic review of the psychometric properties
of three commonly used GPBMs [EQ-5D, SF-6D and Health Utilities Index Mark 3 (HUI3)] in four broadly
defined conditions: visual impairment, hearing impairment, cancer and skin conditions. (2) Potential
modelling approaches to ‘map’ EQ-5D values from condition-specific and clinical measures of health
[European Organisation for Research and Treatment of Cancer Quality-of-life Questionnaire Core 30
(EORTC QLQ-C30) and Functional Assessment of Cancer Therapy – General Scale (FACT-G)] are compared
for predictive ability and goodness of fit using two separate data sets. (3) Three potential extensions to the
EQ-5D are developed as ‘bolt-on’ items relating to hearing, tiredness and vision. They are valued using the
time trade-off method. A second valuation study is conducted to fully value the EQ-5D with and without
the vision bolt-on item in an additional sample of 300 people.
Setting: The valuation surveys were conducted using face-to-face interviews in the respondents’ homes.
Participants: Two representative samples of the UK general population from Yorkshire (n = 600).
Interventions: None.
Main outcome measures: Comparisons of EQ-5D, SF-6D and HUI3 in four conditions with various
generic and condition-specific measures. Mapping functions were estimated between EORTC QLQ-C30
and FACT-G with EQ-5D. Three bolt-ons to the EQ-5D were developed: EQ + hearing/vision/tiredness.
A full valuation study was conducted for the EQ + vision.
Results: (1) EQ-5D was valid and responsive for skin conditions and most cancers; in vision, its
performance varied according to aetiology; and performance was poor for hearing impairments. The HUI3
performed well for hearing and vision disorders. It also performed well in cancers although evidence was
limited and there was no evidence in skin conditions. There were limited data for SF-6D in all four
conditions and limited evidence on reliability of all instruments. (2) Mapping algorithms were estimated to
predict EQ-5D values from alternative cancer-specific measures of health. Response mapping using all the
domain scores was the best performing model for the EORTC QLQ-C30. In an exploratory analysis, a
limited dependent variable mixture model performed better than an equivalent linear model. In the full
analysis for the FACT-G, linear regression using ordinary least squares gave the best predictions followed
by the tobit model. (3) The exploratory valuation study found that bolt-on items for vision, hearing and
tiredness had a significant impact on values of the health states, but the direction and magnitude of
differences depended on the severity of the health state. The vision bolt-on item had a statistically
significant impact on EQ-5D health state values and a full valuation model was estimated.
Conclusions: EQ-5D performs well in studies of cancer and skin conditions. Mapping techniques
provide a solution to predict EQ-5D values where EQ-5D has not been administered. For conditions
where EQ-5D was found to be inappropriate, including some vision disorders and for hearing, bolt-ons
provide a promising solution. More primary research into the psychometric properties of the generic
preference-based measures is required, particularly in cancer and for the assessment of reliability.
Further research is needed for the development and valuation of bolt-ons to EQ-5D.
Funding: This project was funded by the UK Medical Research Council (MRC) as part of the MRC-NIHR
methodology research programme (reference G0901486) and will be published in full in Health Technology
Assessment; Vol. 18, No. 9. See the NIHR Journals Library website for further project information.

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Use of generic and condition-specific measures of health-related quality of life in NICE decision-making: a systematic review, statistical modelling and survey

Posttreatment surveillance and diagnosis of recurrence in women with gynecologic malignancies: Society of Gynecologic Oncologists recommendations

Macrophage activation syndrome (MAS) is a severe, frequently fatal complication of systemic juvenile idiopathic arthritis (sJIA) with features of hemophagocytosis leading to coagulopathy, pancytopenia, and liver and central nervous system dysfunction. MAS is overt in 10% of children with sJIA but occurs subclinically in another 30-40%. It is difficult to distinguish sJIA disease flare from MAS. Development of criteria for establishing MAS as part of sJIA are under way and will hopefully prove sensitive and specific. Mutations in cytolytic pathway genes are increasingly being recognized in children who develop MAS as part of sJIA. Identification of these mutations may someday assist in MAS diagnosis. Defects in cytolytic genes have provided murine models of MAS to study pathophysiology and treatment. Recently, the first mouse model of MAS not requiring infection but rather dependent on repeated stimulation through Toll-like receptors was reported. This provides a model of MAS that may more accurately reflect MAS pathology in the setting of autoinflammation or autoimmunity. This model confirms the importance of a balance between pro- and anti-inflammatory cytokines. There has been remarkable progress in the use of anti-pro-inflammatory cytokine therapy, particularly against interleukin-1, in the treatment of secondary forms of MAS, such as in sJIA.

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Macrophage activation syndrome as part of systemic juvenile idiopathic arthritis: diagnosis, genetics, pathophysiology and treatment.

Purpose Routine follow-up of adult cancer survivors is an important clinical and health service issue. Because of a lack of evidence supporting advantages of long-term follow-up care in oncology clinics, there is increasing interest for the locus of this care to be provided by primary care physicians (PCPs). However, current Canadian PCP views on this issue have been largely unknown. Methods A mail survey of a random sample of PCPs across Canada, stratified by region and proximity to urban centers, was conducted. Views on routine follow-up of adult cancer survivors and modalities to facilitate PCPs in providing this care were determined. Results A total of 330 PCPs responded (adjusted response rate, 51.7%). After completion of active treatment, PCPs were willing to assume exclusive responsibility for routine follow-up care after 2.4 ± 2.3 years had elapsed for prostate cancer, 2.6 ± 2.6 years for colorectal cancer, 2.8 ± 2.5 years for breast cancer, and 3.2 ± 2.7 years for lymphoma. PCPs already providing...

https://ascopubs.org/doi/pdf/10.1200/JCO.2008.20.4883

Primary Care Physicians' Views of Routine Follow-Up Care of Cancer Survivors

BACKGROUND:

Treatment of febrile neutropenia (FN) is costly, because it typically involves hospitalization. As cancer rates continue to increase, the number of patients suffering from FN will also increase, making it important to quantify the costs of treating this condition accurately and comprehensively.



METHODS:

A consecutive sample of patients admitted to an inpatient hematology/oncology ward at a tertiary care hospital for the treatment of chemotherapy-induced FN was enrolled in this study. Patients were followed prospectively during hospitalization, and information on medical resource utilization including length of stay, medications, and laboratory and diagnostic tests was collected. Costs, extracted from hospital and provincial databases, were used to calculate the overall cost per FN episode, from the hospital perspective.



RESULTS:

Fifty-one episodes of FN that occurred in 46 patients were included in the study. Approximately 52% of these episodes occurred in women, and 65% of these episodes occurred in patients with hematologic malignancies. The mean ± standard deviation age of patients was 60.3 ± 13.4 years. The mean length of stay per episode was 6.8 ± 4.9 days. The mean overall cost per episode was 6324 ± 4783 in 2007 Canadian dollars.



CONCLUSIONS:

Hospitalization for the treatment of FN is expensive. The results of this study could be used in future economic evaluations of preventive measures and treatments for FN, including primary prophylactic administration of hematopoietic growth factors and outpatient treatment of this condition. Cancer 2010. © 2009 American Cancer Society.

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Evaluation of direct medical costs of hospitalization for febrile neutropenia

https://www.jrheum.org/content/jrheum/34/1/241.full.pdf

Macrophage activation syndrome after etanercept treatment.

Follicular lymphoma (FL) is characterized by an initial response to treatment with inevitable relapse. We evaluated chemoimmunotherapy resistance (CIR resistance) including transformation. We identified patients who received rituximab combination therapy for symptomatic FL. CIR resistance was defined as disease progression during rituximab-based chemoimmunotherapy, rituximab maintenance or within 6 months of treatment completion. Our primary outcome was time to early progression (CIR resistance). Between July 2006 and April 2010, 132 patients met the inclusion criteria and 22 (16.7%) demonstrated CIR resistance with a median follow-up of 33 months. High-risk Follicular Lymphoma International Prognostic Index (FLIPI) score was predictive of CIR resistance (hazard ratio [HR] 2.43; 95% confidence interval [CI], 1.4-4.1; p = 0.001). Overall, eight patients (36.3%) transformed (biopsy-proven), with no transformation in the chemoimmunotherapy responder group. Median overall survival in the CIR resistant group was 47 months. Patients with CIR resistance had high rates of histologic transformation and shorter survival with poor response to next therapy.

Eugenia Piliotis

Papers

Primary Care Physicians' Views of Routine Follow-Up Care of Cancer Survivors

Evaluation of direct medical costs of hospitalization for febrile neutropenia

Macrophage activation syndrome after etanercept treatment.

Chemoimmunotherapy resistant follicular lymphoma: predictors of resistance, association with transformation and prognosis

Iron Overload and Haematopoiesis in MDS: Does Blood Transfusion Promote Progression to AML?