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

Background: The vital role played by family caregivers in supporting dying cancer patients is well recognized, but the burden and economic impact on caregivers is poorly understood. We prospectively examined the psychosocial, occupational and economic impact of caring for a person with a terminal illness. Methods: We studied 89 caregivers of women with advanced breast cancer receiving care at either the Ottawa or Hamilton regional cancer centres in Ontario. Patients were followed until their death or study completion at 3 years. Patients identified a principal caregiver to participate in the study. The Karnofsky Performance Status (KPS) index, the Medical Outcomes Study 36-item Short Form (SF-36), the Hospital Anxiety and Depression Scale, the Zarit Burden Inventory, FAMCARE and the Medical Outcomes Study Social Support Survey were administered during follow-up. Economic data were collected by means of a questionnaire administered by an interviewer. Assessments were conducted every 3 months during the palliative period (KPS score > 50) and every 2 weeks during the terminal period (KPS score ≤ 50). Results: Over half of the caregivers were male (55%) and the patient9s spouse or partner (52%), with a mean age of 53 years. At the start of the palliative period, the caregivers9 mean physical functioning score was better than the patients9 (51.3 v. 35.1, 95% confidence interval [CI] 13.3–20.0); there were similar mean mental functioning scores (46.6 and 47.1 respectively); similar proportions were depressed (11% and 12%); and significantly more caregivers than patients were anxious (35% v. 19%, p = 0.009). More caregivers were depressed (30% v. 9%, p = 0.02) and had a higher level of perceived burden (26.2 v. 19.4, p = 0.02) at the start of the terminal period than at the start of the palliative period. Burden was the most important predictor of both anxiety and depression. Of employed caregivers, 69% reported some form of adverse impact on work. In the terminal period 77% reported missing work because of caregiving responsibilities. Prescription drugs were the most important component of financial burden. Interpretation: Caregivers9 depression and perceived burden increase as patients9 functional status declines. Strategies are needed to help reduce the psychosocial, occupational and economic burden associated with caregiving.

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Family caregiver burden: results of a longitudinal study of breast cancer patients and their principal caregivers

Racial and ethnic minorities, older adults, rural residents, and individuals of low socioeconomic status are underrepresented among participants in cancer-related trials. The authors conducted a systematic review to determine the barriers to participation of underrepresented populations in cancer-related trials. Their search included English-language publications that reported original data on the recruitment of underrepresented groups to cancer treatment or prevention trials between 1966 and December 2005 in multiple electronic databases. They also hand-searched titles in 34 journals from January 2003 to December 2005 and they examined reference lists for eligible articles. Titles and abstracts were reviewed to identify relevant studies. Data on barriers to participation were synthesized both qualitatively and based on statistically significant associations with trial enrollment. Of 5257 studies that were cited, 65 studies were eligible for inclusion in the current analysis, including 46 studies on recruitment into cancer therapeutic trials, 15 studies on recruitment into prevention trials, and 4 studies on recruitment into both prevention and treatment trials. Numerous factors were reported as barriers to participation in cancer-related trials. However, only 20 of the studies reported statistically significant associations between hypothesized barriers and enrollment. The available evidence had limitations in quality regarding representativeness, justification of study methods, the reliability and validity of data-collection methods, potential for bias, and data analysis. The results indicated that underrepresented populations face numerous barriers to participation in cancer-related trials. The current systematic review highlighting the literature on recruitment of underrepresented populations to cancer trials and may be used as the evidence base toward developing an agenda for etiologic and intervention research to reduce the disparities in participation in cancer-related trials.

Barriers to recruiting underrepresented populations to cancer clinical trials: a systematic review.

The purpose of this article is to review the literature and update analyses pertaining to the aggressiveness of cancer care near the end of life. Specifically, we will discuss trends and factors responsible for chemotherapy overuse very near death and underutilization of hospice services. Whether the concept of overly aggressive treatment represents a quality-of-care issue that is acceptable to all involved stakeholders is an open question.

Aggressiveness of Cancer Care Near the End of Life: Is It a Quality-of-Care Issue?

Objective: To adequately help family caregivers (FCs) of cancer patients, clinicians need to understand the complexity of the problems and responsibilities associated with cancer patients illness that FCs experience.

Methods: This systematic review identified the types of problems and burdens that FCs of cancer patients experience during the patient's illness. We also analyzed the language caregivers use to communicate their problems and responsibilities related to caregiving for the cancer patient.

Results: Of 2845 titles identified, 192 articles met the inclusion criteria and are included in this review. Of these, 164 were research-based. In addition to FC responsibilities and the impact of being a caregiver on daily life, a number of other physical, social, and emotional problems related to caregiving for these FCs were identified.

Conclusion: A substantial evidence base supports the conclusion that FCs experience many difficult problems and increased responsibilities during and after the patient is undergoing treatment and rehabilitation for cancer. The insights gained from this review will help researchers and clinicians to understand the complexity of problems and responsibilities FCs experience. This understanding may encourage them to include support for FCs as part of total or holistic patient care. However, more research is needed to better understand the variations in caregiving experiences over time; how the caregiving perspective is influenced by different cultural, ethnic, or socioeconomic backgrounds as well as gender and age; and how problems and responsibilities related to caregiving interfere with daily life. Copyright © 2009 John Wiley & Sons, Ltd.

https://onlinelibrary.wiley.com/doi/pdf/10.1002/pon.1670

Review of the literature on the effects of caring for a patient with cancer.

Background: There is an increasing demand for oncology care as a result of a number of trends. In combination with ongoing changes to the health-care system, these trends have an impact on the workplace environment of systemic therapy personnel.



Methods: A postal survey was sent to major providers of tertiary systemic therapy services in Ontario. Included in the survey were measures of job satisfaction and stress. In order to capture in-depth data related to survey themes, focus groups were held with personnel at six major cancer treatment facilities. Content analysis identified major themes.



Results: Analysis of focus group and survey studies showed that the greatest source of job satisfaction stemmed from patient care and contact. Manifestations of increasing workload emerged as major sources of job stress. Personnel were concerned as to what they saw as negative consequences of heavy workload—a perceived decrease in the quality of patient care and staff morale.



Conclusions: The findings of this research suggest that the current workplace environment is having a negative impact on the well-being of systemic therapy staff, and may have consequences in terms of quality of patient care. Personnel identified system changes that they felt would help alleviate workload and resulting stress. Copyright © 2004 John Wiley & Sons, Ltd.

Job stress and job satisfaction of cancer care workers

BACKGROUND

The literature continues to report low rates of accrual to cancer clinical trials. Previous studies have examined principally physician-related or patient-related barriers. Clinical research associates (CRAs) have a unique perspective on enrollment that has been explored very little. This study sought the views of CRAs on barriers and facilitators to accrual.



METHODS

Focus groups were held at six of eight tertiary cancer centers in Ontario, Canada. Audiotapes of sessions were transcribed and subjected to content analysis by two of the authors. Emergent themes were identified. These themes are illustrated by representative quotes taken from the transcripts.



RESULTS

Factors that acted as barriers or facilitators were classified into physician-related, patient-related, or system-related factors. CRAs identified physician attitudes regarding patient participation as the principal physician-related barrier. Barriers, facilitators, and modifying factors that were related to patient involvement were discussed by CRAs. Patients seemed more knowledgeable about trials than in the past and were willing to participate. System factors were considered to have the greatest impact on the ability to accrue. CRAs identified increasing trial and pharmaceutical demands coupled with tight trial time lines. Time was seen as a diminishing resource. Greater demands not only affect specific clinical trial accrual but also affect general support for trials in the cancer center and hospital.



CONCLUSIONS

The impact of greater demands in a climate of decreasing health care resources is perceived by CRAs as having a negative affect on accrual. Consequently, the important process of translating potentially beneficial basic research findings into clinical practice is slowed. Cancer 2002;95:1577–83. © 2002 American Cancer Society.



DOI 10.1002/cncr.10862

Barriers and facilitators to enrollment in cancer clinical trials: qualitative study of the perspectives of clinical research associates.

Aim: To describe the psychosocial impact on caregivers of caring for women with advanced breast cancer.



Methods: Five focus groups were held with bereaved caregivers. Qualitative content analysis of the transcripts was conducted to identify emerging themes.



Results: Two categories of caregivers were identified: spouse caregivers (SCGs) and non-spouse caregivers (NSCGs), who were either close friends or relatives. SCGs and the patient managed care cooperatively and shared care-related decision making. Working SCGs managed multiple roles but employers gave them support and freedom to take the time that was necessary to care for their wives. NSCGs had the most life roles to manage, and saw themselves as agents for the patient. The terminal phase of disease was most burdensome for all caregivers, although NSCGs had the most difficulties. During this phase, the patients' activities of daily living became much more impaired. In addition, some patients were not willing to receive continence support from caregivers, and some caregivers found that they could not provide continence support. SCGs were able to negotiate these care-related roles with their spouse, but NSCGs struggled to satisfy the wishes of the patient.



Conclusion: Caregivers assume great responsibility for providing care, particularly during the terminal phase. Caregiving becomes more complex with each additional life role of the caregiver. SCGs have two advantages: (1) living with the patient facilitates caregiving and (2) patterns of decision making that were established previous to the illness facilitated shared decision making between the patient and spouse caregiver. Copyright © 2003 John Wiley & Sons, Ltd.

Marjorie Coristine

Papers

Family caregiver burden: results of a longitudinal study of breast cancer patients and their principal caregivers

Job stress and job satisfaction of cancer care workers

Barriers and facilitators to enrollment in cancer clinical trials: qualitative study of the perspectives of clinical research associates.

Caregiving for women with advanced breast cancer.