Recurrent Respiratory Papillomatosis Foundation

(Accepted for publication in the ENT News, September 1997)

Bill Stern, M.S.

RRP Foundation, P.O. Box 6643, Lawrenceville NJ 08648-0643

phone: 609-530-1443 or 609-258-2751; fax: 609-530-1912;
e-mail: wfs@gfdl.gov or mstern@pucc.princeton.edu http://members.aol.com/rrpf/RRPF.html

 

The Recurrent Respiratory Papillomatosis Foundation (RRPF) was initially created in 1992 to provide patient/family support by encouraging communication between families affected by recurrent respiratory papillomatosis (RRP). Furthermore, it was noted that a number of surgeons treating RRP patients were not always up-to-date on some of the latest non-surgical aspects of this disease. In this regard, one of the main objectives of the RRPF is to be an RRP information resource for practitioners and their patients, as well as a forum for networking the RRP community. This article will highlight information content and ways in which the RRPF accomplishes information exchange. Other organizational goals and objectives of the RRPF not covered here, have been detailed in a recent announcement article.1

The RRPF's key vehicle for disseminating information to the RRP community is the RRP Newsletter, which has been published semi-annually since February 1992. By covering the human, clinical and scientific aspects of RRP, the newsletter attempts to serve the entire RRP community, including patients/families, attending physicians/nurses, as well as researchers and others seeking RRP information. In particular, the newsletter tries to address questions and concerns of RRP patients and their families, many of which surgeons are not in a good position to answer, such as those having to do with coping and living with RRP. The newsletter also strives to stay abreast of the latest in RRP clinical treatments, including reports on current and proposed research studies related to RRP as well as updated statistics from the RRPF's own database of RRP patients.

A second RRPF publication, the RRP Medical Reference Service, provides more comprehensive information about RRP related research studies. Each issue is comprised of a collection of between 35 and 50 abstracts from RRP relevant medical journal articles. Subscribers receive semi-annual updates based on a broad search of current medical literature.

In addition to the two publications noted above, there are two other informational products that the RRPF is involved with. First is a directory of RRP patient/family names and addresses, designed to encourage communication among members of the RRPF family support network. Only those who grant permission are included on the list and the directory is made available only to RRP families. We have found that many people feel quite alone with this disease and by being able to share their experiences with others who can truly understand their situation, a mutually beneficial therapeutic effect often results. Another informational product is the RRP Video. This video was created in 1988 by the Otolaryngology Department at the University of Iowa Hospital. It provides an excellent overview of RRP which is still quite relevant today, featuring discussions about the disease by Stephen Gray, MD (now at the University of Utah) and Cindy Shive, RN. It also includes interviews with several RRP families and patients. The University of Iowa has granted the RRPF permission to copy, sell and distribute this video.

Another major thrust of the RRPF involves the gathering of information from RRP patients. Locating and surveying RRP patients has been accomplished primarily through their attending otolaryngologists, who are requested to complete a simple practitioner questionnaire that requests basic statistics about their RRP patient population. The RRPF then follows up by mailing patient questionnaires to the otolaryngologists for distribution to their RRP patients/families.

The initial questionnaires focused primarily on issues of patient/family support plus some basic demographic information. As the RRPF has grown, there has been considerable interaction with RRP clinicians and researchers, especially those members of the RRPF Scientific Advisory Committee**. Based on this interaction, the current patient questionnaire is far more comprehensive. Some of the main scientific and clinical components of the questionnaire now include: family/birth history, symptoms and current status, surgical treatment history (including major sites of involvement and HPV typing) and adjuvant treatments.

The RRPF has devoted much time and effort to the investigation of adjunct (or adjuvant) therapies, since they present the RRP patient the possibility of reducing or eliminating the need for surgeries. Indeed, in the case of one easy to administer therapy involving the nutritional supplement Indole-3-Carbinol, the RRPF has been directly involved in the research process. Among a number of RRPF database statistics that are regularly reported on in the RRP Newsletter, is an analysis of adjuvant therapy performance from the perspective of the patients or parents. The following is an analysis of adjunct therapies excerpted from the Spring 97 addition of the RRP Newsletter:

As of May 1997 adjuvant therapy survey responses from 228 patients/families have been received. Of those responding, 85 indicated that they have not used any adjunct therapies and 143 responded that they have tried adjunct treatments (many have tried more than one). The most reported therapy was indole-3-carbinol with 89 users and next was interferon with 55 users responding. The table below summarizes the patient/parent assessed impact of some adjuvant therapies for the subset of users who indicated either some improvement (Improve) or no impact (None). If some improvement is noted, it is further broken down into either a complete response (Comp, i.e., no new growths seen at two typical surgical intervals) or a partial response (Partial).

Therapy

Users

Improve

None

Comp

Partial

Indole-3-Carbinol

55

31

24

11

20

Interferon

31

18

13

1

17

Acyclovir

15

4

11

2

2

Photo Dynamic Therapy

13

4

9

1

3

Ribavirin

2

1

1

0

1

Accutane

6

2

4

0

2

Mumps Vaccine

2

2

0

1

1

The RRPF will continue to serve the RRP Community as an information resource and support organization. The internet is currently playing a significant role in the dissemination and exchange of information and we plan to continue to expand the role of e-mail and the Web as important components of our information network. Finally, the RRPF database of patient information has been growing steadily and may represent the largest single collection of epidemiological data on RRP. It is currently being used in some research efforts and our goal is to provide a well managed, readily accessible and scientifically credible dataset that will benefit RRP research.

Reference

1. Announcement. Recurrent Respiratory Papillomatosis Foundation. Intl J Pediatr Otorhinolaryngol 1997; (in press)

 

**Scientific Advisory Committee

Thomas R. Broker, PhD, University of Alabama at Birmingham Schools of Medicine & Dentistry

Haskins K. Kashima, MD, Johns Hopkins University School of Medicine

Linda Miller, RN, MSN, Children’s Hospital of Philadelphia

Robert J. Ruben, MD, Albert Einstein College of Medicine

Keerti V. Shah, MD, DrPH, Johns Hopkins University School of Hygiene and Public Health

Bettie M. Steinberg, PhD, Long Island Jewish Medical Center

Kathleen Sullivan, RN, Children’s Hospital of Boston