LEARNING OBJECTIVES (TRAINING GOALS):

1. To review and synthesize the available scientific evi-dence.

2. To establish consensus recommendations on post-TBIrehabilitation in children, adolescents, and adults.

METHODS: An expert panel was formed by inviting relevantstakeholders and assuring multidisciplinary and geographicalrepresentation. Literature search for clinical practice guide-lines, systematic reviews, and other synthesis documents wasconducted in MEDLINE, National Electronic Library ofHealth, National Guidelines Clearinghouse, and GuiaSaluduntil April 2009. Identified and selected evidence was supple-mented by articles proposed by panel members and was usedas a starting point. Each chapter of the guideline was assignedto a group of experts who developed the initial draft andpresented it to the rest of the panel. Each recommendation waslinked to an evidence statement, if possible. When there was alack of sufficient evidence and the panel considered an inter-vention to be important, the recommendation was based onexperts’ clinical experience. Agreement on each recommenda-tion was analyzed quantitatively and qualitatively, and resultswere synthesized and presented during consensus conference.RESULTS: The development process comprised: three panelsessions, including brief training on recommendation elabora-tion, work meetings for drafting each chapter, and a finalconsensus conference. There was wide pre-conference agree-ment (higher than 80%) on the initial draft of the recommen-dations. During the consensus conference, disagreements andconflicting recommendations were resolved by discussion, andthe panel released the final document.DISCUSSION (CONCLUSION): This methodology pro-vides a structured approach to assessing the literature anddeveloping recommendations that incorporate clinicians’ ex-perience in clinical areas where there is insufficient evidenceon effectiveness.TARGET AUDIENCE(S):

1. Clinical researcher2. Developer of guideline-based products3. Allied health professionals4. Nurses

P41– Engaging with Spanish speaking patients -

Learning from the challenges and achievements of

the “Pacientes Online” initiative.

Mario G. Tristan, MD (San Jose, Sjo, Costa Rica);Claudia Cattivera, BSc (Presenter) (Pacientes Online,Buenos Aires, Argentina)

PRIMARY TRACK: Guideline development

SECONDARY TRACK: Guidelines in developing countriesBACKGROUND (INTRODUCTION): “Pacientes Online”is an initiative created by patients for patients. Participation ofSpanish-speaking patients–consumers is really low. Severalcountries have organized training activities on Evidence-basedhealth care for consumers. As the initiative has been very

successful, it serves as the Spanish-language branch of theCochrane Consumer network.LEARNING OBJECTIVES (TRAINING GOALS):

1. Understand how the patients’ initiative can be useful forthe clinical guidelines patient validation in areas wherepatient participation in health is low.

2. Identify patient perspective about the health profession-al-patient relationship.

3. Identify the Latin America cultural and educational bar-riers for patient participation on health decisions.

4. Identify the patient perspective for validating clinicalguidelines.

METHODS: “Pacientes Online” (www.pacientesonline.org) is awebsite run by patients for patients. It shows more than 30,000visits per week. The method, launched by Claudia Cattivera,founder and director, was to get together patients and doctors totalk about that relationship that brings them near or distant.RESULTS: So far, five patients have been identified, wheretwo are already contributing with a Cochrane Group. Patientscome from a variety of settings, from patient organizations toindividual contacts. Two patients are interested in musculo-skeletal and back topics and one in colorectal cancer. A newprogram has been launched to promote patient participation inguideline development and to provide training tools.DISCUSSION (CONCLUSION): The success of this pa-tient initiative is challenging for health professionals. It is anexcellent opportunity to have patients involved in many as-pects of health care and research, including the Cochraneconsumers network activities and clinical guidelines develop-ment. It has been empowering to them as individuals and is anew perspective in consumer health education.TARGET AUDIENCE(S):

1. Guideline developer2. Guideline implementer3. Consumers and patients representatives

P42– Experience of developing a CPG of

“Diagnosis and management of contrast media

during intravascular radiologic procedures” for a

teaching hospital at Bogota, Colombia, South

America.

Ana M. Torres, BScPharm (Presenter) (NationalUniversity of Colombia, Bogota, Colombia);Oscar Forero (National University of Colombia,Bogota, Colombia); Luz Moreno, MD (NationalUniversity of Colombia, Bogota, Colombia);Rodrigo Pardo, MD (National University ofColombia, Bogota, Colombia)

PRIMARY TRACK: Guideline developmentSECONDARY TRACK: Guidelines in developing countriesBACKGROUND (INTRODUCTION): The proposed postershows the development of a Clinical Practice Guideline (CPG)about the diagnosis and management of contrast media duringintravascular radiologic procedures. This guideline was elabo-rated as part of a group of CPGs directed to the teaching

99Poster

hospital Santa Rosa of the National University of Colombia atBogota, Colombia.LEARNING OBJECTIVES (TRAINING GOALS):

1. Show the development of a Clinical Practice Guideline(CPG) about the diagnosis and management of contrastmedia during intravascular radiologic procedures.

2. Assessment of a guideline developer’s handbook createdby a methodologist team, based on systematic reviews ofthe literature.

3. Identify structural issues in radiology CPG development.METHODS: The process started on February 2008 and endedon September 2009. The guideline working group developedan evidence-based handbook that was used as a guide duringthe whole process. It started selecting two experts in intravas-cular radiologic procedures, then a CPG methodologist and afellow medical student were invited to join the guideline team.After a systematic prioritization process, the team chose thetopic, taking into account the burden of the adverse events inColombian context, the evidence, clinical practice variability,and relevance for the teaching hospital. The guideline teamfollowed all the systematic steps that are obligatory duringCPG process, among them selection of questions, systematicresearch and critical appraisal of literature, generation of rec-ommendations, consideration of cost-effectiveness of contrastmedia, the equity of the recommendations according to ourhealth system, and the report of a CPG based on evidence.RESULTS: At the end of the process, the CPG was presentedat the XXXIV Radiology National Conference in Medellın,Colombia, where it was granted the first prize, “Gonzalo Es-guerra Gomez,” as the best work of the year.DISCUSSION (CONCLUSION): The experience of devel-oping a CPG in radiology shows several challenges due to theamount and nature of the evidence, gaps in knowledge, thedifferent aspects that needed to be addressed, and the discoverythat well-known practices didn’t have the evidence to supportthem.TARGET AUDIENCE(S):

1. Clinical researcher2. Evidence synthesizer, developer of systematic reviews or

meta-analyses3. Guideline developer4. Guideline implementer5. Quality improvement manager/facilitator6. Medical educator7. Health care policy analyst/policy-maker8. Medical providers and executives9. Allied health professionals10. Consumers and patients representatives

P43– Rare cancers and clinical decision-making

Gemma Gatta, PhD (IRCCS “Istituto Nazionale deiTumori,” Milan, Italy);Jan Maarten Van Der Zwan, MSc (ComprehensiveCancer Centre North East, Groningen, Netherlands);Sabine Siesling, PhD (Comprehensive CancerCentre North East, Groningen, Netherlands);

Annalisa Trama, PhD (IRCCS “Istituto Nazionale deiTumori,” Milan, Italy); Renee Otter, PhD(Comprehensive Cancer Centre North East,Groningen, Netherlands); Sonja Kersten, MSc(Presenter) (Association of Comprehensive CancerCentres, Utrecht, Netherlands);Riccardo Capocaccia, PhD (L’Istituto Superiore diSanita (ISS), Rome, Italy)

PRIMARY TRACK: Guideline developmentSECONDARY TRACK: Other guidelines developmentBACKGROUND (INTRODUCTION): Due to the low fre-quency of patients with rare cancers, caregivers encounterspecific problems in decisions on diagnosis, treatment, healthcare organization, and clinical research. To overcome theseproblems, the Surveillance of Rare Cancers in Europe (RARE-CARE) project aims to provide an operational definition of“rare tumors,” resulting in a list of tumors meeting that defi-nition. Based on the list, the burden of rare cancers is describedwith the indicators: incidence, survival, and prevalence.LEARNING OBJECTIVES (TRAINING GOALS):

1. Identify rare cancers in Europe according to clinical decision-making, health care organization, and clinical research.

2. Increasing awareness of and creating more insight intothe total burden of rare cancers could give an impulse inthe development of specific guidelines.

METHODS: A working group including epidemiologists, pa-thologists, and oncologists developed a definition of rare can-cers based on clinical relevance and frequency of tumors. Datafrom 65 European population-based cancer registries wereanalyzed. A list of tumors reporting number of cases and crudeincidence rates during the period 1995-2002 was built. This listwas hierarchically structured in two main layers based onvarious combinations of ICD-O morphology and topography:layer 1) families of tumors (relevant for the health care orga-nization), layer 2) tumors clinically meaningful (relevant forclinical care and research).RESULTS: The international consensus group agreed to de-fine rare cancers on the basis of a cut-off based on incidence(� 6/100,000/year). Accordingly, 261 tumor entities within thetwo main layers were selected. Data, including the basic indi-cators, on incidence, survival (absolute and relative), and five-year prevalence is now available at www.rarecare.eu. Theoverall result was that about 20% of all cancer cases in the EUare considered as rare cancers.DISCUSSION (CONCLUSION): Increasing awareness ofand creating more insight into the total burden of rare cancerscould give an impulse in the development of specific guide-lines for diagnosis and treatment, development of expertgroups (on European level), and agreements on care central-ization.TARGET AUDIENCE(S):

1. Clinical researcher2. Guideline developer3. Medical educator4. Health care policy analyst/policy-maker

100 Otolaryngology–Head and Neck Surgery, Vol 143, No 1S1, July 2010