• A representative of the National Collaborating Centre for Cancer will present the draft scope.
• NICE staff will outline the guideline development process, stakeholder input into the guideline, the processes of recruitment to the Guideline Development Group and evidence submission.

quote:

Applications wanted for patient & carer members on this clinical guideline development group
The Patient and Public Involvement Programme and the National Collaborating Centre for Cancer are looking for applications from patients and/or carers to sit on the group developing a clinical guideline for metastatic malignant disease of unknown primary origin. It is likely that the guideline will look at tests and imaging investigations in people who are found to have metastases (spread of cancer) but in whom the primary site of the cancer is not known or not immediately obvious, and will consider treatment of people in whom, even after appropriate investigation, the primary site of the cancer is still unknown.

Patient/carer members of this group will play a key role in making sure that patients’ views, experiences and interests (and those of their carers) inform the guideline's development and its recommendations to the NHS.

All members of Guideline Development Groups have equal status, which reflects the relevance and importance of their different expertise and experience. They include health professionals and researchers as well as patient and carer members. All Group members need to attend regular meetings and undertake background reading.

We would welcome an application from you if you have:

• experience or knowledge of metastatic cancer of unknown primary origin, for example, as someone
  - who has had this themselves or
  - who is the relative or carer of someone who has had it or
  - who is a policy officer from a relevant patient organisation
  
• an understanding of, and a willingness to reflect, the experiences and needs of a wider network of relevant patients (perhaps as a member of a support group or patient organisation)
  
• time to commit to the work of the group: attending meetings, background reading, commenting on draft products etc.
  
• good communication and team working skills

Health professionals will be well represented on the group so we are looking for someone without a health professional background.

Patient members of Guideline Development Groups are paid an attendance fee and travel expenses are also reimbursed. The Patient and Public Involvement Programme will provide patient/carer members with dedicated and ongoing support throughout their time on the Group.

For further information about what the role involves and other relevant information please use the link below:
Applications wanted for patient & carer members on this clinical guideline development group

quote:

BACKGROUND: The unknown primary carcinoma in the head and neck has been estimated to represent up to 7% of all head and neck carcinomas. In an attempt to identify the occult primary tumor the evaluation of this patient population has included a complete head and neck examination, flexible fiberoptic endoscopy, and imaging with CT/MRI. More recently, positron emission tomography (PET) has been advocated as a tool to detect primary tumors.
METHODS: A cohort of 31 patients with fine-needle aspiration biopsy-confirmed squamous cell carcinoma were prospectively entered into a diagnostic protocol to identify the occult primary tumor. The diagnostic protocol included a comprehensive head and neck examination (including flexible endoscopy) and CT and/or MRI. If the initial diagnostic evaluation failed to identify a primary tumor, the patients then underwent whole body PET imaging followed by staging endoscopy with biopsy of the at-risk occult tumor sites. The outcome measures included the accuracy of the PET to predict the presence of occult tumor at staging endoscopy and the accuracy of the negative PET and negative panendoscopy in predicting the subsequent development of a primary tumor in the upper aerodigestive tract during follow-up.
RESULTS: The PET detected 9 occult primary tumors in the 31 patients (detection rate, 29%). Five occult primary tumors (2 base of tongue and 3 palatine tonsil) were detected during panendoscopy despite a negative PET. The combination of PET and panendoscopy detected 45.2% of the unknown primary tumors. Seventeen patients (N1, n = 7; N2a, n = 4; N2b, n = 2; N3, n = 4) had no primary tumor detected and were treated as an unknown primary carcinoma with primary neck dissection +/- radiation therapy +/- chemotherapy. In this series of 17 patients, there were 3 neck recurrences (17.6%). In addition, only 1 patient (5.8%) developed a primary tumor of the upper aerodigestive tract with a mean follow-up of 31.1 months (range, 21-60 months).
CONCLUSION: A negative PET study in patients with an occult primary head and neck carcinoma does not preclude the need for panendoscopy with biopsy to detect the occult primary tumor. The risk of subsequent primary tumor appears to be low in the patients with a negative PET and a negative panendoscopy (<6%).

Copyright (c) 2007 Wiley Periodicals, Inc.