Online support resources for patients with skull base tumors

Presentation: P119
Topic: Education / Care Delivery
Type: Poster
Date:
Session:
Authors: Iram Shafqat; Marilene B Wang, MD
Institution(s): UCLA David Geffen School of Medicine


INTRODUCTION:

Treatment of head and neck cancer may include surgery, radiation, and/or chemotherapy; after surviving such aggressive measures, many patients are left to deal with significant sequelae, including cosmetic and functional deficits. They may have problems swallowing, chewing, eating, maintaining weight, speaking, or even socializing. Patients with skull base tumors such as craniopharyngiomas, chordomas, olfactory neuroblastomas, and other types also may experience dramatic changes in quality of life after treatment. Psychosocial support is essential for these patients, to provide an outlet to discuss specific challenges and peer support in finding others who are experiencing similar struggles. Most support groups available for head and neck cancer patients are geared towards oral and laryngeal cancer patients who may face different issues than patients with skull base tumors.


OBJECTIVE:

To assess the availability of support resources for patients with skull base tumors.


METHODS:

We searched for websites that offer information, advice, and support for patients with skull base tumors. We compared the number and types of resources available with those for patients with other head and neck cancers, pituitary tumors, brain tumors, breast cancers and lung cancers.


RESULTS:

There are a total of 16 organizations found to provide support to skull base tumor patients – either by access to an online support group or to patient blogs or stories. Of these organizations, 6 are non-profit, 6 are academic institutions or medical centers, 2 are registered charities, and 2 are private companies. The academic establishments only offered patient stories for public reading. The non-profit, charity, and private organizations (often founded by patients or caregivers) sponsored actual support groups. In contrast, there are as many as 30 (combining in-person and online) support groups for patients with pituitary tumors, 75 support groups for patients with other head and neck cancers, and at least 100 support groups available to those with brain cancers. These patients have the opportunity to join support groups sponsored by large-scale organizations such as the Support for People with Oral and Head and Neck Cancer, the American Brain Tumor Association, and the Pituitary Network Association as well as by major academic institutions and medical centers.


CONCLUSION:

There are sparse support resources available for patients with skull base tumors, compared with other more common head and neck cancers or pituitary tumors. The support that is currently available to skull base tumor patients is mostly sponsored by non-medical professionals. While these resources are highly valuable and must be sought out and made more accessible, it is necessary to look at the source for these web-based support groups because of potential misinformation. There is a significant need for academic institutions and professional medical societies to create a platform for support for skull base tumor patients.