Enhancing Quality of Life Program
October, 2013 - September, 2014
The Enhancing Quality of Life Program will provide educational and social resources to improve the physical and mental health of those affected by a Hereditary Colon Cancer Syndrome. Resources will include bimonthly webinars, a ‘Manage Your Care’ section on the “Hereditary Colon Cancer Takes Guts” Patient Portal, a 21 Day Challenge event, and an online support community.
To empower patients and caregivers to proactively and confidently manage their health.
Description of Activities
The Hereditary Colon Cancer Foundation has already developed Phase I of the ‘HCC Takes Guts’ Patient Portal. After consulting with gastroenterologists, genetic counselors and patients on how best to develop the ‘Quality of Life’ content, Phase II will include the development of the following resources over the next year:
Bimonthly patient education webinars
A “Managing Your Care” section on this site
The ‘It Takes Guts 21 Day Challenge’, a nationwide event inspiring those touched by HCCS (patients, care-givers, or medical professionals) to boost their quality of life by setting a personal action goal that is achievable over a 21 day period
An online support group, with bimonthly online meet-ups led by genetic counselors, with focused topics including: considerations in youth screening age, supporting sibling relations, family planning, ongoing screening and treatment protocols
Local support groups led by genetic counselors with quarterly meetings
A one-to-one or small group peer mentoring program
Justification of Need
Today, when patients are diagnosed with a hereditary colon cancer syndrome (HCCS), they will likely fall under the care of a gastroenterologist whom has never treated a patient with their disease and has access to only a limited amount of published resources. When patients turn to the internet to learn what the prognosis means, they find medical explanations, but minimal patient-based information. They are unable to thoroughly research surgical options; they will struggle to find dietary recommendations to ensure proper nutrition for a surgically altered body, and they will not likely find inspiring words that give hope for living an active life with their disease.
In the near future, when patients are diagnosed with an HCCS, they will turn to the ‘Hereditary Colon Cancer Takes Guts’ Patient Portal. There they will find support from a network of specialists and fellow survivors. They will have access to an entire community along with resources developed for hereditary colon cancer patients, their loved ones and care-givers. This community will include survivors, hereditary colon cancer specialists, genetic counselors, dietitians, surgeons, researchers, therapists, family planners and alternative medical practitioners. Ultimately, HCCS patients, along with their loved ones and medical care givers, will feel empowered. Together, they will be able to make informed decisions. Patients will read inspiring stories and interact with other survivors. They will be filled with hope, knowing that they can lead active, joyful lives and can in-turn inspire others to do the same.