The NationalComprehensive CancerNetwork: What’s ItAll About?

The National ComprehensiveCancer Network (NCCN), analliance of 17 of the world’s leadingcancer centers, was established in1995. Utilizing education, research,measurement and management, theNCCN has helped enhance theeffectiveness and efficiency ofcancer care in the UnitedStates.

Under the leadership of RodgerWinn, MD, the NCCN physiciansand researchers have developed theNCCN Oncology Practice

Guidelines. The breadth and scopeof this collaborative effort, whichnow covers more than 97% of allcancer types, represents significantprogress, beyond any previouslydeveloped guidelines. The NCCNguidelines have become the mostwidely used in oncology practice.NCCN guidelines are timely in theirdevelopment, updated at leastannually, specific in theirrecommendations, and are beingimplemented through performancemeasurement. In addition, theNCCN guideline panels addresssupportive care areas, such asantiemesis, psychosocial distress,and pain management. In the year2000, the NCCN will create aguidelines subscription service,through which providers can access

the complete library of NCCNguidelines, 91 in all. Periodicupdates will be sent out as newinformation becomesavailable.

Another important undertakingat the NCCN is the OutcomesOncology Database. This projectmeasures the adherence ofclinicians to NCCN guidelines, andprovides clinical and otheroutcomes data to evaluate thequality of cancer care. The Databasewas launched at five NCCNinstitutions on July 1, 1997,focusing on breast cancer.Expansion of the Database isunderway, with four additionalmember institutions participatingand new disease sites being added.Non-Hodgkin’s Lymphoma is the

Figure 1 Locations of National Comprehensive Cancer Network centers

CancerPractice

CANCER PRACTICE January/February 2000, Vol. 8, No. 1 1© American Cancer Society 1065-4704/00/$14.00/1 1–3

next set of cancers to be measuredby the NCCN Outcomes Database.Community cancer centers will beadded to the Database within thenext year. Finally, the NCCNOncology Outcomes Database willbe able to not only measurephysician adherence to the NCCNguidelines but also report onpatient demographics, diagnosticinterventions, stage- andseverity-adjusted specific treatment,response to treatment, long-termsurvival, and productivity measures(lost work days during the first 90days of treatment).

The NCCN also helps patientsmake informed decisions. Througha partnership with the AmericanCancer Society (ACS), the NCCN istranslating NCCN practiceguidelines for all of the majorcancers and supportive care issuesinto patient versions. To date,breast and prostate cancer areavailable. These patient-friendlyresources offer cancer patients andtheir families reliable, specific, andeasy to understand information tohelp them make timely andwell-informed treatment decisions.Copies of the patient guidelines areavailable by calling the NCCN(1-888-909-NCCN) or the ACS(1-800-ACS-2345). Up-to-date

versions of the patient guidelinesare posted on the web atwww.nccn.org or www.cancer.org.

By accessing the NCCN PatientInformation and Referral Service at1-888-909-NCCN, patients canreceive help pinpointing resourcesamong NCCN member institutions,including experts in pediatriconcology and geneticscreening/testing; consultation andreferral for difficult cases; andclinical trials that offer the latestand most promising newtreatments.

In addition, the NCCN hasdeveloped a model to enhance thecapabilities of member institutionsto develop global pricing forspecific stages of specific cancersfor the management of care 1-yearpost-diagnosis or 1-yearpost-detection of suspicious lesion.The first model completed is that ofbreast cancer. While the model isbuilt directly from the breast cancerguideline, it is much more in-depthand comprehensive in itsdelineation of units of resourcesconsumed. This model can beapplied to the development ofcapitated rates or specific caserates; it also has significant utilityfor the analysis of resourceconsumption under different

management modules and,therefore, can be applied in costanalyses and cost-effectivenessstudies.

The NCCN members aretreating 90,000 new cancer patientseach year and have a goodgeographic distribution across theUnited States. This, coupled withthe NCCN’s commitment tomanagement through measurementand, most importantly, itsdedication and advocacy for thecare of patients, allows NCCN andits member institutions to continueproviding efficient, effective cancercare every day.Written by: Tricia Wilson, Project Spe-cialist, National Comprehensive CancerNetwork, Rockledge, Pennsylvania.

Low Literacy Skills:An Important Barrierin Healthcare

Evidence is growing that asignificant percent of thepopulation have limited readingskills and, therefore, are not able toread and understand even simplewritten medical instructions. At atime when more and more care ofcancer patients is being shifted to

Figure 2 Sample: Guidelines for Invasive Breast Cancer

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Cancer Practice The Front PageThe The Front Front PagePagepatients and families (as a result ofshorter hospital stays and increasedreliance on outpatient care), theinability to read can severely limitpatients’ ability to manage theircare because of their inability tounderstand patient educationmaterials, medicine labels, andconsent forms. The 1992 NationalAdult Literacy Survey indicated thatabout 40 million Americans cannotread or write and another 45million have only marginal readingskills. Gazmararian et al (Healthliteracy among Medicare enrolleesin a managed care organization.JAMA Feb 10, 1999; 281(6):545-551) reported that, of 3260new Medicare enrollees age 65 andolder, 34% of the English-speakingand 54% of the Spanish speakingrespondents had inadequate ormarginal health literacy in thelanguage that they speak. Readingability declined dramatically withage, with the prevalence ofinadequate health literacy increasingfrom 16% of persons age 65 to 69years to 58% of those aged 85 yearsor older, indicating that illiteracy isespecially likely to be a problemamong older cancer patients andtheir families.

The American MedicalAssociation and the JointCommission of Accreditation ofHealth Care Organizations (JCAHO)have both recognized theprevalence of illiteracy and theneed to reach out to illiteratepatients. JCAHO guidelines includedirections to hospitals tosystematically evaluate the extent towhich patients understandinstructions and informed consent,while the American MedicalAssociation Council on ScientificAffairs in 1998 adopted severalrecommendations that recognizeilliteracy as a barrier to healthcareand call for increased funding forresearch and education of medicalstudents and practicing physicianson how to communicate effectivelywith illiterate patients. Theyrecommend that future researchshould focus on how to screen for

poor health literacy, effective healtheducation communicationtechniques, outcomes and costsassociated with poor health literacy,and the causal pathway of howpoor health literacy influenceshealth (Health literacy: Report ofthe Council on Scientific Affairs.JAMA. Feb 10, 1999; 281(6):552-557).

NCI Recommends New“Patient Friendly”Informed Consent

A 3-year effort by the NationalCancer Institute (NCI)Comprehensive Working Group onInformed Consent in CancerClinical Trials has resulted in a newrecommended format for informedconsent forms. This includes atemplate with aquestion-and-answer formatintended to promote a betterconversation between the patientand the doctor. Otherrecommended features include:

• Clearly explain the purpose ofthe study in the context ofstandard care and why thepatient is eligible.

• The investigational treatmentshould never be described as theonly chance for cure. Whenrelevant, the consent form shouldstate that the investigationaltherapy may be no better than ormay even be inferior to standardtherapy or have no therapeuticeffect.

• Documents should be written atan eighth grade or lower readinglevel.

• Clinical trial participants shouldbe given access to additionalinformation relevant to the studywhile making their decisions andthroughout the duration of thetrial.

The NCI has posted the recommen-dations and template at its CancerTrials Web site (http://cancertrials.nci.nih.gov).

New Hope for EarlierDetection ofPancreatic Cancer?A combination of endoscopicultrasound (EUS) andendoscopic retrogradecholangiopancreatography (ERCP)may help screen for precancerousdysplasia of the pancreas in personswith a strong family history ofpancreatic cancer.

The EUS involves imaging thepancreatic ducts, while the ERCPutilizes contrast dye and x-ray ofthe pancreatic ducts. In a recentstudy, Brentnall and colleaguesfound that together, these twoimaging tests may identifyprecancerous changes of thepancreas, allowing removal of thepancreas and prevention of furthermalignant development.

In 10 of 14 patients tested, EUSimages showed abnormalities in thepancreatic ducts. These 10 patientsthen underwent ERCP testing, andresults showed possible dysplasia inseven patients. The seven patientsopted for removal of the pancreas,and subsequent examination oftissue confirmed precancerousdysplasia.

While this new screeningregimen is promising, leaders in thefield caution that 1) it is not knownwhether the seven patients wouldhave developed pancreatic cancer,2) it is not yet known whetherthose who had negative test resultswill develop pancreatic cancer; and3) because removal of the pancreasleaves the patient diabetic, a strongfamily history would be necessaryto warrant its removal. Dr. Brentnallindicated that the screeningregimen is a huge step forward, butshould only be conducted at majorcancer centers that have theexperience and technology toensure accurate results. Ultimately,it is hoped that development ofspecific tumor markers forpancreatic cancer will lead toearlier detection and treatment.Source: American Cancer Society online.www.cancer.org. September 30, 1999.

Department Editors: Peter S. Houts, PhD; Raymond E. Lenhard, Jr, MD; and Claudette Varricchio, RN, DNS, OCN.Queries and contributions to The Front Page may be sent to the Department Editors at Cancer Practice, American Cancer Society,

1180 Avenue of the Americas, New York, NY 10036.

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