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J Pain Symptom Manage. 2014 Jan;47(1):77-89. 

Concepts and definitions for "actively dying," "end of life," "terminally ill," "terminal care," and "transition ofcare": a systematic review.

Hui D1, Nooruddin Z2, Didwaniya N2, Dev R2, De La Cruz M2, Kim SH3, Kwon JH4, Hutchins R5, Liem C5, Bruera E2.

Abstract

CONTEXT:

The terms "actively dying," "end of life," "terminally ill," "terminal care," and "transition of care" are commonly used but rarely and inconsistently defined.

OBJECTIVES:

We conducted a systematic review to examine the concepts and definitions for these terms.

METHODS:

We searched MEDLINE, PsycINFO, Embase, and CINAHL for published peer-reviewed articles from 1948 to 2012 that conceptualized, defined, or examined these terms. Two researchers independently reviewed each citation for inclusion and then extracted the concepts/definitions when available. We also searched 10 dictionaries, four palliative care textbooks, and 13 organization Web sites, including the U.S. Federal Code.

RESULTS:

One of 16, three of 134, three of 44, two of 93, and four of 17 articles defined or conceptualized actively dying, end of life, terminally ill, terminal care, and transition of care, respectively. Actively dying was defined as "hours or days of survival." We identified two key defining features for end of life, terminally ill, and terminal care: life-limiting disease with irreversible decline and expected survival in terms of months or less. Transition of care was discussed in relation to changes in 1) place of care (e.g., hospital to home), 2) level of professions providing the care (e.g., acute care to hospice), and 3) goals of care (e.g., curative to palliative). Definitions for these five terms were rarely found in dictionaries, textbooks, and organizational Web sites. However, when available, the definitions were generally consistent with the concepts discussed previously.

CONCLUSION:

We identified unifying concepts for five commonly used terms in palliative care and developed a preliminary conceptual framework toward building standardized definitions.

Copyright © 2014 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

KEYWORDS:

Actively dying; end of life; systematic review; terminal care; terminally ill; terminology; transition of care

Support Care Cancer. 2013 Mar;21(3):659-85.

Concepts and definitions for "supportive care," "best supportive care," "palliative care," and "hospice care" in the published literature, dictionaries, and textbooks.

Hui D1, De La Cruz M, Mori M, Parsons HA, Kwon JH, Torres-Vigil I, Kim SH, Dev R, Hutchins R, Liem C, Kang DH, Bruera E.

Abstract

PURPOSE:

Commonly used terms such as "supportive care," "best supportive care," "palliative care," and "hospice care" were rarely and inconsistently defined in the palliative oncology literature. We conducted a systematic review of the literature to further identify concepts and definitions for these terms.

METHODS:

We searched MEDLINE, PsycInfo, EMBASE, and CINAHL for published peer-reviewed articles from 1948 to 2011 that conceptualized, defined, or examined these terms. Two researchers independently reviewed each citation for inclusion and then extracted the concepts/definitions when available. Dictionaries/textbooks were also searched.

RESULTS:

Nine of 32 "SC/BSC," 25 of 182 "PC," and 12 of 42 "HC" articles focused on providing a conceptual framework/definition. Common concepts for all three terms were symptom control and quality-of-life for patients with life-limiting illness. "SC" focused more on patients on active treatment compared to other categories (9/9 vs. 8/37) and less often involved interdisciplinary care (4/9 vs. 31/37). In contrast, "HC" focused more on volunteers (6/12 vs. 6/34), bereavement care (9/12 vs. 7/34), and community care (9/12 vs. 6/34). Both "PC" and "SC/BSC" were applicable earlier in the disease trajectory (16/34 vs. 0/9). We found 13, 24, and 17 different definitions for "SC/BSC," "PC," and "HC," respectively. "SC/BSC" was the most variably defined, ranging from symptom management during cancer therapy to survivorship care. Dictionaries/textbooks showed similar findings.

CONCLUSION:

We identified defining concepts for "SC/BSC," "PC," and "HC" and developed a preliminary conceptual framework unifying these terms along the continuum of care to help build consensus toward standardized definitions.

Ann Oncol. 2015 Apr 28. 

Implementation of supportive care and best supportive care interventions in clinical trials enrolling patients with cancer†.

Lee RT1, Ramchandran K2, Sanft T3, Von Roenn J4.

Author information

Abstract

BACKGROUND:

With the growing and evolving role of palliative care in oncology, we examined how supportive care (SC) and best supportive care(BSC) are implemented in clinical trials when used as a comparison treatment arm.

METHODS:

We conducted a systematic review of the literature for clinical trials published between 1980 and 2012 in which systemic anticancer therapy was compared with an SC-only arm and compared SC implementation with World Health Organization (WHO) published guidelines.

RESULTS:

Our search identified 189 articles, 73 of which met our inclusion criteria with the following cancer types: 29 lung, 7 colorectal, 6 pancreatic, 5 gastric and 26 others. Fifty-five studies (75%) provided some definition of SC, and 48 studies (66%) used the term BSC. Twenty-one of the 55 studies that provided a definition described the use of palliative therapies as being 'at the discretion of the treating physician' without standardization. Only two studies provided SC that incorporated routine physical, psychological and social assessments including rapid referral to SC specialists. SC interventions most commonly included analgesics (47%) and radiotherapy (44%). Trials using the term BSC versus SC were more likely to include blood transfusions (P = 0.002) and antibiotics (P = 0.033), but less likely to include steroids (P = 0.05) and palliativespecialists (P = 0.047).

CONCLUSIONS:

The implementation of SC in clinical trials in this systematic review is highly variable. The vast majority of the studies did not meet the WHO guidelines on SC because palliative care therapies were not recommended or integrated into care. Future clinical trials utilizing a SC intervention arm should define these interventions in a standardized approach that meets current guidelines such as the WHO recommendations.

© The Author 2015. Published by Oxford University Press on behalf of the European Society for Medical Oncology. All rights reserved. For permissions, please email: journals.permissions@oup.com.

KEYWORDS:

best supportive care; cancer clinical trials; palliative care; supportive care

Br J Cancer. 2015 Jun 11. 

Best supportive care in clinical trials: review of the inconsistency in control arm design.

Nipp RD1, Currow DC2, Cherny NI3, Strasser F4, Abernethy AP5, Zafar SY5.

Author information

Abstract

BACKGROUND:

Best supportive care (BSC) as a control arm in clinical trials is poorly defined. We conducted a review to evaluate clinical trials' concordance with published, consensus-based framework for BSC delivery in trials.

METHODS:

A consensus-based Delphi panel previously identified four key domains of BSC delivery in trials: multidisciplinary care; supportive caredocumentation; symptom assessment; and symptom management. We reviewed trials including BSC control arms from 2002 to 2014 to assess concordance to BSC standards and to selected items from the CONSORT 2010 guidelines.

RESULTS:

Of 408 articles retrieved, we retained 18 after applying exclusion criteria. Overall, trials conformed to the CONSORT guidelines better than the BSC standards (28% vs 16%). One-third of articles offered a detailed description of BSC, 61% reported regular symptom assessment, and 44% reported using validated symptom assessment measures. One-third reported symptom assessment at identical intervals in both arms. None documented evidence-based symptom management. No studies reported educating patients about symptom management or goals of therapy. No studies reported offering access to palliative care specialists.

CONCLUSIONS:

Reporting of BSC in trials is incomplete, resulting in uncertain internal and external validity. Such studies risk systematically over-estimating the net clinical effect of the comparator arms.British Journal of Canceradvance online publication 11 June 2015; doi:10.1038/bjc.2015.192 www.bjcancer.com.

PMID:

 

26068397

 

[PubMed - as supplied by publisher]

Eur J Cancer. 2015 Jun 11. 

Survival prediction for advanced cancer patients in the real world: 

A comparison of the Palliative Prognostic Score, Delirium-Palliative Prognostic Score, Palliative Prognostic Index and modified Prognosis in Palliative CareStudy predictor model.

Baba M1, Maeda I2, Morita T3, Inoue S4, Ikenaga M5, Matsumoto Y6, Sekine R7, Yamaguchi T8, Hirohashi T9, Tajima T10, Tatara R11, Watanabe H12, Otani H13, Takigawa C14, Matsuda Y15, Nagaoka H16, Mori M17, Tei Y18, Hiramoto S19, Suga A20, Kinoshita H21.

Author information

Abstract

PURPOSE:

The aim of this study was to investigate the feasibility and accuracy of the Palliative Prognostic Score (PaP score), Delirium-PalliativePrognostic Score (D-PaP score), Palliative Prognostic Index (PPI) and modified Prognosis in Palliative Care Study predictor model (PiPS model).

PATIENTS AND METHODS:

This multicentre prospective cohort study involved 58 palliative care services, including 19 hospital palliative careteams, 16 palliative care units and 23 home palliative care services, in Japan from September 2012 to April 2014. Analyses were performed involving four patient groups: those treated by palliative care teams, those in palliative care units, those at home and those receiving chemotherapy.

RESULTS:

We recruited 2426 participants, and 2361 patients were finally analysed. Risk groups based on these instruments successfully identified patients with different survival profiles in all groups. The feasibility of PPI and modified PiPS-A was more than 90% in all groups, followed by PaP and D-PaP scores; modified PiPS-B had the lowest feasibility. The accuracy of prognostic scores was ⩾69% in all groups and the difference was within 13%, while c-statistics were significantly lower with the PPI than PaP and D-PaP scores.

CONCLUSION:

The PaP score, D-PaP score, PPI and modified PiPS model provided distinct survival groups for patients in the three palliative caresettings and those receiving chemotherapy. The PPI seems to be suitable for routine clinical use for situations where rough estimates of prognosis are sufficient and/or patients do not want invasive procedure. If clinicians can address more items, the modified PiPS-A would be a non-invasive alternative. In cases where blood samples are available or those requiring more accurate prediction, the PaP and D-PaP scores and modified PiPS-B would be more appropriate.

Copyright © 2015 Elsevier Ltd. All rights reserved.

KEYWORDS:

Accuracy; Palliative Prognostic Index; Palliative Prognostic Score; Palliative care; PiPS model; Predication; Prognosis

Theor Med Bioeth. 2015 Jun;36(3):197-213. doi: 10.1007/s11017-015-9329-5.

Palliative sedation, foregoing life-sustaining treatment, and aid-in-dying: what is the difference?

Daly P1.

Author information

Abstract

After a review of terminology, I identify-in addition to Margaret Battin's list of five primary arguments for and against aid-in-dying-the argument from functional equivalence as another primary argument. 

I introduce a novel way to approach this argument based on Bernard Lonergan's generalized empirical method (GEM). 

Then I proceed on the basis of GEM to distinguish palliative sedation, palliative sedation to unconsciousness when prognosis is less than two weeks, and foregoing life-sustaining treatment from aid-in-dying. 

I conclude 

(1) that aid-in-dying must be justified on its own merits and not on the basis of these well-established palliative care practices; and 

(2) that societies must decide, in weighing the merits of aid-in-dying, whether or not to make the judgment that no life is better than life-like-this (however this is specified) part of their operative value structure

Am Soc Clin Oncol Educ Book. 2015;35:e593-9. 

Cancer pain management: safe and effective use of opioids.

Bruera E1, Paice JA1.

Author information

Abstract

Pain remains a serious consequence of cancer and its treatment. Although significant advances have been made in providing effective cancer pain control, barriers persist. 

Lack of knowledge, limited time, financial restrictions, and diminished availability of necessary medications serve as significant obstacles. 

Safe and effective opioid use in a patient with cancer requires skill to overcome these challenges. 

Understanding the mechanism of action, along with the pharmacokinetics and pharmacodynamics, of opioids will lead to appropriate selection, dosing, and titration of these agents. 

Rotation from one opioid or route to another is an essential proficiency for oncologists. 

As opioid-related adverse effects often occur, the oncology team must be expert in preventing and managing constipation, nausea, sedation, and neurotoxicities. 

An emerging concern is overtreatment-the excessive and prolonged use of opioids in patients when these agents may produce more harm than benefit. 

This can occur when opioids are used inappropriately to treat comorbid psychologic issues such as anxiety and depression. 

Recognizing risk factors for overuse along with key components of universal precautions will promote safe use of these medications, supporting adherence and preventing diversion, thereby protecting the patient, the prescriber, and the community.

 Because substance use disorders are not rare in the oncology setting, attention must be given to the balance of providing analgesia while limiting harm. 

Caring for patients with substance misuse requires compassionate, multidisciplinarycare, with input from supportive oncology/palliative care as well as addiction specialists.

Neurosurg Focus. 2014 Dec;37(6):E5. 

Home palliative care and end of life issues in glioblastoma multiforme: 

results and comments from a homogeneous cohort of patients.

Pompili A1, Telera S, Villani V, Pace A.

Author information

Abstract

OBJECT:

Glioblastoma multiforme (GBM) is a rare tumor whose prognosis has remained poor over the years despite innovative radio- and chemotherapies, and important technical advances in neurosurgery such as intraoperative imaging, fluorescence, Cavitron ultrasonic surgical aspirator, and neuronavigation. Particular attention has been dedicated in the last years to the end of life (EOL) period in cancer patients for both ethical and socioeconomic issues. Good palliative care at home avoids improper and expensive hospitalizations, and helps and trains families, caregivers, and patients in facing a difficult situation.

METHODS:

In 2012-2013 the authors' group cared for 197 patients with brain tumors. Of these there were 122 with GBMs: 64 died and 58 are still receiving assistance. The clinical conditions are periodically evaluated with the following scales: Barthel Index, Karnofsky Performance Scale, and Mini-Mental State Examination. Home care staff includes 2 neurologists, 5 nurses, 2 psychologists, 3 rehabilitation therapists, and 1 social worker. The intensity of care changes at the different stages of disease, ranging from low to medium levels of intensity at the progression stage (more than 1 access weekly) to high levels of intensity at the EOL stage (at least 3 accesses weekly). Control MRI studies are obtained every 3 months before terminal progression.

RESULTS:

Overall in this sample of patients there were 2838 home visits and 11,714 days of assistance. Thirty-four patients (14 female and 20 male) died at home (53.1%); 22 (13 female and 9 male) at the hospice (34.4%); and 8 (4 female and 4 male) at the hospital (12.5%). A positive impact on caregivers for home assistance was recorded in 97% of cases, for nursing in 95%, communication in 90%, rehabilitation at home in 92%, and social work help in 85%. Also, 72% had an improvement in their quality of life scores due to rehabilitation. End of life palliative sedation with midazolam was necessary in 11% of cases to obtain good control of symptoms such as uncontrolled delirium, agitation, death rattle, or refractory seizures. Intramuscular phenobarbital is the authors' drug of choice for the severe seizures that occurred in 30% of cases. The reduction of steroid dosage is also used to decrease wakefulness. Steroids were withdrawn in 45% of patients dying at home, mild hydration was done in 87%, and tube feeding in 13%. The decision-making process at the EOL stage is time consuming, but the degree of distress of the family is inversely proportional to the extent of the preparatory period.

CONCLUSIONS:

A previous paper showed the positive cost-effectiveness of home assistance for a larger group of patients dealing with any kind of malignant brain tumors. The same is enhanced for patients with GBM. This requires a well-trained neuro-oncology team that manages neurological deterioration, clinical complications, rehabilitation, and psychosocial problems with a multidisciplinary approach.

KEYWORDS:

EOL = end of life; GBM = glioblastoma multiforme; KPS = Karnofsky Performance Scale; QOL = quality of life; brain tumor; end of life; glioblastoma multiforme; home care; malignant glioma; palliative care

Int Psychogeriatr. 2015 Jun 10:1-13. 

Achieving consensus and controversy around applicability of palliative care to dementia.

van der Steen JT1, Radbruch L2, de Boer ME1, Jünger S3, Hughes JC4, Larkin P5, Gove D6, Francke AL1, Koopmans RT7, Firth P8, Volicer L9, Hertogh CM1.

Author information

Abstract

BACKGROUND:

People with dementia may benefit from palliative care which specifically addresses the needs of patients and families affected by this life-limiting disease. On behalf of the European Association for Palliative Care (EAPC), we recently performed a Delphi study to define domains for palliative care in dementia and to provide recommendations for optimal care. An international panel of experts in palliative care, dementia care or both, achieved consensus on almost all domains and recommendations, but the domain concerning the applicability of palliative care to dementia required revision.

METHODS:

To examine in detail, the opinions of the international panel of 64 experts around the applicability of palliative care, we explored feedback they provided in the Delphi process. To examine which experts found it less important or less applicable, ordinal regression analyses related characteristics of the panelists to ratings of overall importance of the applicability domain, and to agreement with the domain's four recommendations.

RESULTS:

Some experts expressed concerns about bringing up end-of-life issues prematurely and about relabeling dementia care as palliative care. Multivariable analyses with the two outcomes of importance and agreement with applicability indicated that younger or less experienced experts and those whose expertise was predominantly in dementia care found palliative care in dementia less important and less applicable.

CONCLUSIONS:

Benefits of palliative care in dementia are acknowledged by experts worldwide, but there is some controversy around its earlyintroduction. Further studies should weigh concerns expressed around care receiving a "palliative" label versus the benefits of applying palliative careearly.

KEYWORDS:

comfort care; consensus; dementia; end of life; guidelines; palliative care

J Palliat Med. 2014 Sep;17(9):1054-63. 

Economic impact of hospital inpatient palliative care consultation: review of current evidence and directions for future research.

May P1, Normand C, Morrison RS.

Author information

Abstract

BACKGROUND:

Maintaining the recent expansion of palliative care access in the United States is a recognized public health concern. Economic evaluation is essential to validate current provision and assess the case for new programs. Previous economic reviews in palliative care reported on programs across settings and systems; none has examined specifically the hospital consultative model, the dominant model of provision in the United States.

OBJECTIVES:

To review systematically the economic evidence on specialist palliative care consultation teams in the hospital setting, to appraise this evidence critically, and to identify areas for future research in this field.

DATA SOURCES:

A meta-review ("a review of existing reviews") was conducted of eight published systematic reviews and one relevant nonsystematic review. To identify articles published outside of the timeframe of these reviews, systematic searches were performed on the PubMed, CINAHL, and EconLit databases.

STUDY SELECTION:

Articles were included if they compared the costs and/or cost effectiveness of a specialist hospital inpatient palliative care consultation for adult patients with those of a comparator.

RESULTS:

Ten studies were included and these demonstrate a clear pattern of cost-saving impact from inpatient consultation programs. Nevertheless, knowledge gaps still exist regarding the economic effects of these programs. Current evidence has been generated from the hospital perspective; health system costs, patient and caregiver costs, and health outcomes are typically not included.

CONCLUSIONS:

Inpatient palliative care consultation programs have been shown to save hospitals money and to provide improved care to patients with serious illness. With a clear pattern of cost-saving using current methodology, it is timely to begin expanding the scope of economic evaluation in this field. Future research must address the measurement of both costs and outcomes to understand more fully the role that palliative care plays in enhancing value in health care. Relevant domains for such research are identified.

J Clin Oncol. 2015 Jun 8. 

Prospective Cohort Study of Hospital Palliative Care Teams for Inpatients With Advanced Cancer: Earlier Consultation Is Associated With Larger Cost-Saving Effect.

May P1, Garrido MM2, Cassel JB2, Kelley AS2, Meier DE2, Normand C2, Smith TJ2, Stefanis L2, Morrison RS2.

Author information

Abstract

PURPOSE:

Previous studies report that early palliative care is associated with clinical benefits, but there is limited evidence on economic impact. This article addresses the research question: Does timing of palliative care have an impact on its effect on cost?

PATIENTS AND METHODS:

Using a prospective, observational design, clinical and cost data were collected for adult patients with an advanced cancer diagnosis admitted to five US hospitals from 2007 to 2011. The sample for economic evaluation was 969 patients; 256 were seen by apalliative care consultation team, and 713 received usual care only. Subsamples were created according to time to consult after admission. Propensity score weights were calculated, matching the treatment and comparison arms specific to each subsample on observed confounders. Generalized linear models with a γ distribution and a log link were applied to estimate the mean treatment effect on cost within subsamples.

RESULTS:

Earlier consultation is associated with a larger effect on total direct cost. Intervention within 6 days is estimated to reduce costs by -$1,312 (95% CI, -$2,568 to -$56; P = .04) compared with no intervention and intervention within 2 days by -$2,280 (95% CI, -$3,438 to -$1,122; P < .001); these reductions are equivalent to a 14% and a 24% reduction, respectively, in cost of hospital stay.

CONCLUSION:

Earlier palliative care consultation during hospital admission is associated with lower cost of hospital stay for patients admitted with an advanced cancer diagnosis. These findings are consistent with a growing body of research on quality and survival suggesting that early palliativecare should be more widely implemented.

© 2015 by American Society of Clinical Oncology.

PMID:

 

26056178

 

[PubMed - as supplied by publisher]

Breast-Cancer Screening SPECIAL REPORT Breast-Cancer Screening — Viewpoint of the IARC Working Group B. Lauby-Secretan and Others    In November 2014, experts from 16 countries met at the International Agency for Research on Cancer (IARC) to assess the cancer-preventive and adverse effects of different methods of screening for breast cancer. In preparation for the meeting, the IARC scientific staff performed searches of the openly available scientific literature according to topics listed in an agreed-upon table of contents. The full report is presented in volume 15 of the IARC Handbooks of Cancer Prevention. Clinical Pearls   What data is available to assess the effectiveness of contemporary mammographic screening? The IARC working group recognized that the relevance of randomized, controlled trials conducted more than 20 years ago should be questioned, given the large-scale improvements since then in both mammographic equipment and treatments for breast cancer. More recent, high-quality observational studies were considered to provide the most robust data with which to evaluate the effectiveness of mammographic screening. The working group gave the greatest weight to cohort studies with long follow-up periods and the most robust designs, which included those that accounted for lead time, minimized temporal and geographic differences between screened and unscreened participants, and controlled for individual differences that may have been related to the primary outcome. Analyses of invitations to screenings (rather than actual attendance) were considered to provide the strongest evidence of screening effectiveness, since they approximate the circumstances of an intention-to-treat analysis in a trial.   Is there evidence of a reduction in breast cancer mortality with mammographic screening? Some 20 cohort and 20 case–control studies, all conducted in the developed world (Australia, Canada, Europe, or the United States) were considered by the IARC working group to be informative for evaluating the effectiveness of mammographic screening programs, according to invitation or actual attendance, mostly at 2-year intervals. Most incidence-based cohort mortality studies, whether conducted in women invited to attend screening or women who attended screening, reported a clear reduction in breast-cancer mortality, although some estimates pertaining to women invited to attend were not statistically significant. Women 50 to 69 years of age who were invited to attend mammographic screening had, on average, a 23% reduction in the risk of death from breast cancer; women who attended mammographic screening had a higher reduction in risk, estimated at about 40%. Case–control studies that provided analyses according to invitation to screening were largely in agreement with these results. Morning Report Questions Q. Is there benefit to mammographic screening of women 70 to 74 years of age, and is there a benefit for those 40 to 44 years of age? A. In the IARC analysis, a substantial reduction in the risk of death from breast cancer was consistently observed in women 70 to 74 years of age who were invited to or who attended mammographic screening in several incidence-based cohort mortality studies. Fewer studies assessed the effectiveness of screening in women 40 to 44 or 45 to 49 years of age who were invited to attend or who attended mammographic screening, and the reduction in risk in these studies was generally less pronounced. Overall, the available data did not allow for establishment of the most appropriate screening interval. Table 1. Evaluation of Evidence Regarding the Beneficial and Adverse Effects of Different Methods of Screening for Breast Cancer in the General Population and in High-Risk Women. Q. What harms are associated with mammographic screening? A. Estimates of the cumulative risk of false positive results differ between organized programs and opportunistic screening. The estimate of the cumulative risk for organized programs is about 20% for a woman who had 10 screens between the ages of 50 and 70 years. Less than 5% of all false positive screens resulted in an invasive procedure. There is an ongoing debate about the preferred method for estimating overdiagnosis. After a thorough review of the available literature, the working group concluded that the most appropriate estimation of overdiagnosis is represented by the difference in the cumulative probabilities of breast-cancer detection in screened and unscreened women, after allowing for sufficient lead time. The Euroscreen Working Group calculated a summary estimate of overdiagnosis of 6.5% (range, 1 to 10%) on the basis of data from European studies that adjusted for both lead time and contemporaneous trends in incidence. The estimated cumulative risk of death from breast cancer due to radiation from mammographic screening is 1 to 10 per 100,000 women, depending on age and the frequency and duration of screening. It is smaller by a factor of at least 100 than the estimates of death from breast cancer that are prevented by mammographic screening for a wide range of ages. After a careful evaluation of the balance between the benefits and adverse effects of mammographic screening, the working group concluded that there is a net benefit from inviting women 50 to 69 years of age to receive screening.