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Lorenz K, Lynn J, Dy S, et al. Cancer Care Quality Measures: Symptoms and End-of-Life Care. Rockville (MD): Agency for Healthcare Research and Quality (US); 2006 May. (Evidence Reports/Technology Assessments, No. 137.)

  • This publication is provided for historical reference only and the information may be out of date.

This publication is provided for historical reference only and the information may be out of date.

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Cancer Care Quality Measures: Symptoms and End-of-Life Care.

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Cancer is a common and costly problem that affects many Americans, their families, and their caregivers, since many are affected by a cancer diagnosis. Approximately 9.6 million Americans who were alive in January 2000 were living with a diagnosis of cancer, and approximately 1.4 million new cases of cancer were diagnosed in 2004.1 The most recent estimate of lifetime risk suggests that males have an approximately one in two risk and women a one in three risk of developing cancer.1 Direct medical expenditures on cancer exceeded $180 billion in 2000. The costs of care are concentrated in the time just following diagnosis and the last few months before death, with about one-third of expenditures in the final year.2 The most common malignancies include lung, breast, colorectal, and prostate, for which 2003 estimates of 5-year survival rates varied from 15% (lung) to 99% (prostate).3

In spite of the prevalence of cancer and its enormous personal and societal costs, little effort has been made to systematize the assessment of the quality of palliative cancer care. In 2004, the Agency for Healthcare Research and Quality requested a systematic review of quality measures for supportive cancer care in the areas of pain, dyspnea, depression, and advance care planning (ACP). AHRQ and a collaborative of Federal Partners, including the Centers for Disease Control and Prevention (CDC), the Centers for Medicare & Medicaid Services (CMS), and the National Cancer Institute (NCI), sponsored the report in order to assist the National Quality Forum (NQF) by identifying and describing quality measures for supportive cancer care including the evidence that they are ready or nearly ready for incorporation into routine clinical practice. An additional purpose of this report was to identify gaps in measurement that could be the basis for a quality measurement research agenda, including areas in which no measures exist, or in which measures exist but for which additional evidence is needed.

Supportive Care and the Cancer Continuum

Cancer imposes its burdens on patients and caregivers from diagnosis to death, and even long-term survivors often live with substantial impairments. Supportive care addresses the direct and treatment-related impacts of cancer, pain and symptom management and the psychosocial context, including spirituality and the challenges of caregiving; it is important in all phases of cancer care. Symptoms may prompt (e.g., dyspnea) or be precipitated by (e.g., depression) the diagnosis of cancer, and treatment and progressive illness typically impose substantial symptomatic burdens. Some common cancers are diagnosed at a late stage: Only 16% of lung cancer cases are localized at the time of diagnosis.1 Supportive approaches focus on assisting patients and caregivers to maximize well-being and can ameliorate many of the debilitating consequences of living with a cancer diagnosis, regardless of cancer stage.46 As early diagnosis and more effective treatment extend the experience of living with cancer, seamless integration of supportive principles and approaches becomes even more imperative.

Pain is one of the most common symptoms in patients with cancer and is often inadequately treated when measured by patient or staff perceptions, particularly in vulnerable subgroups.79 Cancer pain can result from direct primary or metastatic tumor involvement, including bone and neurologic pain; from diagnostic interventions; and as a side effect of chemotherapy or radiation therapy.7 One-third to one-half of patients in active treatment, and three quarters of patients with advanced cancer experience pain.10 Chronic pain also may be a component of cancer survivorship, and many patients with cancer also have pain due to unrelated causes. Many studies have documented that pain is often inadequately treated, and the quality of treatment varies widely among centers.8 Racial and ethnic disparities in pain assessment and management have been described.11

Dyspnea is an unpleasant, distressing, and common experience among cancer patients: over half of cancer patients experience significant shortness of breath.1218 In the final months and days of life with cancer, rates of dyspnea range from 60% to 90%, with the symptom especially prominent in those with lung cancer.1316, 19 For example, 87% of 673 patients with stage III or IV non-small cell lung cancer reported dyspnea.19 Numerous etiologies for dyspnea exist in cancer, including pulmonary or pleural metastasis, anemia, and muscular weakness. Despite the prevalence of dyspnea among cancer patients, the majority of dyspnea research has been conducted in patients with chronic pulmonary conditions.13, 20, 21 However, a promising evidence base supports assessment and interventions to improve the experience of cancer patients with dyspnea.21

Depression has received increasing attention as a cause of distress or suffering in patients living with cancer.10 Studies suggest that around one quarter of cancer patients experience depression during the course of their care.10 Depressive symptoms often accompany the diagnosis of cancer,22 and depression is strongly associated with other symptoms—such as pain—that may fluctuate in severity over the course of cancer treatment.10 Depressive symptoms accompany patient and caregiver experiences throughout all stages of cancer care, including wrestling with treatment disappointments, the complications of therapy and of cancer itself, and progressive illness. Evidence has demonstrated an important relationship between depression and spiritual or existential well-being, especially related to how patients and caregivers maintain hope along the trajectory of the cancer experience.2326

Another important area of consideration regarding cancer care is ACP. Early on, the emphasis in ACP was on legal initiatives, “living wills,” and other similar documentation; however, over time, the concept has broadened to emphasize a process of effective communication and planning ahead to shape an appropriate course of care.27 Now, high quality practice includes ACP for a number of reasons: to allow patients to shape care to their preferences, to avoid imposition of unwanted treatment in urgent situations, to relieve patient and family anxiety, and to ensure availability of the specific practical arrangements that will allow the patient to have optimal care, on his or her own terms. Cancer treatment commonly requires potentially difficult interventions such as chemotherapy or surgery. The utilization of high intensity care such as hospitalization, particularly in an ICU, varies significantly among elderly cancer patients, without a clear relationship to patient-centered outcomes.2830 Because of the emphasis on documentation of choices among a narrow set of treatment preferences, research on this topic emphasizes outcomes related to health care utilization generally or the actual use of particular services.21 However, informed consent and self-determination are cardinal ethical principles, and self determination is endorsed by both patients and caregivers as an important value in late life care.31 Furthermore, planning ahead allows deliberate forgoing of undesired care.


Supportive care emphasizes treatment to minimize symptoms and enhance patient and caregiver well-being and is relevant across the trajectory of cancer care, from diagnosis and initial treatment to chronic progressive illness and the end-of-life. Palliative care is a term that is sometimes used interchangeably with the term supportive care, except that palliative care generally refers to a focus on care for patients in more-advanced stages of illness. Pain, dyspnea, depression, and ACP are common, high impact concerns to be considered as targets for quality assessment and improvement. All of these areas represent problems that affect many patients receiving care for common malignancies, although the importance of particular symptoms varies among major cancers and throughout the illness trajectory. Pain, dyspnea, and depression, and ACP represent areas in which substantial initial research has begun to define the scope of the challenges and effective interventions for patients with cancer. ACP is relevant to all phases of cancer, as potentially difficult treatments may be employed, and effective communication is always important to cancer patients and their caregivers.


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