ondary qualitative research was performed synthesizing evi-dence from qualitative studies. Since locating and finding qual-itative evidence remains a challenge, main databases as well asother more specific electronic databases were reviewed.RESULTS: Four CPGs (anxiety, insomnia, autism, andstroke) were developed and followed the described methodol-ogy. Primary research has gotten information on the under-standing of the health-disease process and the social context.We also collected personal experiences, caregiver-patient re-lationships, behaviors, and attitudes as variables related to theseeking of medical help. Qualitative evidence facilitatedknowledge about the disease stages and communication prob-lems, as well as patient compliance. Participation was success-ful in defining CPG key questions and developing patientinformation.DISCUSSION (CONCLUSION): Incorporating patientperspectives in CPG may help understand the health-diseaseprocess, improve the implementation of recommendations, andreach a higher compliance. Likewise, a better answer to pa-tients’ necessities is achieved and patients are more satisfiedwith the health-care system.TARGET AUDIENCE(S):

1. Clinical researcher2. Guideline developer3. Allied health professionals4. Consumers’ and patients’ representatives

S75– Patients initiate and lead the

Multidisciplinary Guideline for Orofacial Pain

Marianne van den Berg, PhD (Presenter) (DutchHeadache Patient Organisation, Bunde,Netherlands); Jan Helder, PhD (Dutch HeadachePatient Organisation, Utrecht, Netherlands);Ella Lever (Dutch Headache Patient Organisation,Arnhem, Netherlands); Rianne De Wit, PhD(Maastricht University, Maastricht, Netherlands);Arnolda P. Nauta, PhD (The Netherlands Society ofOccupational Medicine, Delft, Netherlands)

PRIMARY TRACK: Guideline developmentSECONDARY TRACK: Patient/family/stakeholder roles inguideline developmentBACKGROUND (INTRODUCTION): Patients with orofa-cial pain are usually seen by several specialists. The averagetime between the first medical consult and the diagnosis ismore than one year. An adequate consultation between thephysician and various specialists is not common use. Thismakes that patients get lost in the maze of medical and para-medical attendants.LEARNING OBJECTIVES (TRAINING GOALS):

1. Become aware that for patients the process of care andcollaboration is very important.

2. Understand that patients need to be well informed inorder to realize shared decision making.

3. Understand that it is important to make arrangements forwho is in charge of the medical supervision.

METHODS: The Dutch Headache Patient Association initi-ated the development of a multidisciplinary clinical practiceguideline (CPG) for orofacial pain. A working group consist-ing of representatives of 14 professional groups together witha delegation of patients was set up. This group is now in chargeof developing this CPG.RESULTS: The process of development will be systemati-cally evaluated during the next months.

Some preliminary recommendations based on our experi-ences are:1. Professionals of all the disciplines concerned have to

speak the same simple language, in order to communi-cate clearly with each other and with the patient.

2. Professionals of all disciplines should know what theother professionals actually can do for the patient withorofacial pain in terms of diagnostics and treatment.

3. Cooperation between all professionals must improve,especially between physicians and dentists.

4. The physician or the dentist should be charged with themedical supervision of the total process of care in orderto prevent that the patient feels entangled.

5. A special version of the CPG for patients should be madeso that the doctor can confer with a well-informed patient(shared decision making).

DISCUSSION (CONCLUSION): Initiating and leading thedevelopment of a CPG by patients shows that the process ofcare and collaboration deserves full attention. This project isfunded by the Netherlands Organisation for Health Researchand Development (ZonMw).TARGET AUDIENCE(S):

1. Guideline developer2. Guideline implementer3. Health care policy analyst/policymaker4. Medical providers and executives5. Allied health professionals6. Consumers’ and patients’ representatives

S76– Stakeholder engagement in the scoping

phase of clinical guideline development: Challenges

and solutions

Nichole Taske, PhD (Presenter) (NICE, London,England, United Kingdom); Claire Turner, BSc(NICE, London, England, United Kingdom);Amanda Killoran, PhD (NICE, London, England,United Kingdom); Andrew Gyton, BA (NICE,London, England, United Kingdom);Michael Heath, BSc (NICE, Manchester, England,United Kingdom)

PRIMARY TRACK: Guideline developmentSECONDARY TRACK: Patient/family/stakeholder roles inguideline developmentBACKGROUND (INTRODUCTION): The National Insti-tute for Health and Clinical Excellence (NICE) encouragesstakeholders to get involved in the development of our guid-ance at all stages. Stakeholders can include national organiza-

51Oral Presentation

tions that represent patients and caretakers (or local organiza-tions if there are no relevant national patient and caretakerorganizations), health-care professionals, the National HealthService (NHS), organizations that fund or carry out research,and the health care industry. During the scoping phase ofguideline development, registered stakeholders are invited tocomment on the draft scope (what the guideline will and willnot cover) at two stages: before public consultation on the draftscope through attendance at a scoping workshop, and againduring the 4-week public consultation stage.LEARNING OBJECTIVES (TRAINING GOALS):

1. To review stakeholder involvement during the scopingphase of all clinical guidelines that commenced during2009.

2. To identify opportunities for further facilitating activestakeholder engagement during guideline development.

METHODS: We have used a mixed-methods approach: wehave undertaken an audit of stakeholder involvement; soughtthe views of stakeholders through questionnaires and briefone-to-one interviews; and examined stakeholder commentssubmitted during consultation through a thematic analysis.RESULTS: Across the 18 clinical guidelines that wentthrough the scoping process during 2009, an average of 112(range 56-187) stakeholders registered an interest in eachguideline. Of registered stakeholders, an average of 30.6%(range 12.4%-50.6%) either attends the pre-consultation scop-ing workshop or submits written comments during consulta-tion on the draft scope. The predominant stakeholder organi-zation type at registration stage is NHS organizations, whereasorganizations representing health-care professionals are thepredominant stakeholder organization type at the scopingworkshop. Organizations representing the interests of patientsand caretakers are comparatively underrepresented at all stagesof the scoping process.DISCUSSION (CONCLUSION): Proposed revisions to thescoping process will be discussed in light of stakeholder viewsand findings from the audit and thematic analysis.TARGET AUDIENCE(S):

1. Guideline developer2. Consumers’ and patients’ representatives

S77– Standardization of patient participation in

guideline development

Ilse Raats, PhD (Presenter) (Dutch Institute forHealthcare Improvement CBO, Utrecht,Netherlands); Martine M. Versluijs, MSc (Fed ofPatients and Consumer Organisations NPCF,Utrecht, Netherlands); Haske van Veenendaal, MSc(Dutch Institute for Healthcare Improvement CBO,Utrecht, Netherlands); Jako Burgers, MD (DutchInstitute for Healthcare Improvement CBO, Utrecht,Netherlands)

PRIMARY TRACK: Guideline developmentSECONDARY TRACK: Patient/family/stakeholder roles inguideline development

BACKGROUND (INTRODUCTION): Patients are becom-ing increasingly involved in the development of clinical guide-lines. However, the methods used for patient participation arediverse and not standardized.LEARNING OBJECTIVES (TRAINING GOALS):

1. Understand patient representatives’ needs and experi-ences concerning guideline development.

2. Identify critical steps for patient participation in guide-line development.

3. Identify different methods for facilitating patient partic-ipation.

4. Understand how to standardize patient participation.METHODS: We explored patient representatives’ experi-ences and needs concerning participation in guideline devel-opment with a questionnaire. The results were used to developand pilot test the following tools to support patient participa-tion in guideline development:1. A model for patient participation in clinical guideline

development. A panel of guideline developers and pa-tient representatives identified the most important phasesfor patient participation in guideline development bydiscussion until they reached consensus.

2. A manual and training course for patient representatives,including a questionnaire to evaluate the training course.

3. A manual for guideline developers.We sought acceptance and commitment for standardizedpatient participation in guideline development by askingleading guideline organizations and patient organizations toendorse the tools.RESULTS: Nineteen patient representatives from guidelinedevelopment groups filled in the questionnaire. In the pilot,thirty patients from recently started guideline developmentgroups were trained in four sessions and received the manual.The evaluation showed that the provided support was highlyappreciated and improved the patients’ role in the workinggroup. Twenty patient organizations and six guideline devel-oping organizations in the Netherlands endorsed the tools tosupport patient participation in guideline development.DISCUSSION (CONCLUSION): We standardized patientparticipation in guideline development in the Netherlands, byidentifying critical steps, facilitating patient participation withtools for patient representatives and guideline developers, andby gaining support from patient organizations and guidelinedevelopers. Next step is to translate the tools in English and tovalidate them internationally.TARGET AUDIENCE(S):1. Evidence synthesizer, developer of systematic reviews or

meta-analyses2. Guideline developer3. Guideline implementer4. Developer of guideline-based products5. Quality improvement manager/facilitator6. Health care policy analyst/policymaker7. Medical providers and executives8. Allied health professionals9. Consumers’ and patients’ representatives10. Nurses

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