Patient Advocacy Activities

PATIENT ADVOCACY ACTIVITES

Briefly: One of the main focuses in working in the field of GI motility disorders if to be able to help patients in multiple aspects of their lives, since these disorders  often present with multi-systemic involvement. Some areas of activity are below.

History:  Patient advocacy for the patients seen with GI motility disorders is an outgrowth of listening to the patients. As more and more patients were seen their stories became familiar. This led to involvement with patient support groups as one way to advocate for patients. This in turn led to more patient involvement as advocates when then has led to more patients being involved. The projects have mirrored this approach, as we have learned more from patients than we have been able to provide help for them.

Projects:  First was the project looking at psychological, behavioral and quality of life measures longitudinally for GI patients beginning about 25 years ago. The next project has been the ongoing QOLA initiative, which has been publishing intermittently. This work has merged into projects related to assessment of Patient reported outcomes. Current work has been related to community involvement in patients with chronic illnesses. Some of this work overlaps the QOL/PRO working group, which is a page posted on this site; there is some overlap between this page and others, and some duplication of projects and publications.

Original Publications, chronologically:

Abell TL, Malagelada JRM, Lucas AL, Brown MC, Camilleri M, Go VL, Azpiroz F, Callaway CW,  Kao PC, Zinsmeister AL, Huse D. Gastric electromechanical and neurohormonal function in anorexia nervosa. Gastroenterology. 1987: 93:958-965.

Abell TL, Cutts TF, Cooper T: Effect of cisapride therapy for severe dyspepsia on gastrointestinal symptoms and quality of life. Scand J Gastroenterology Supplement 1993: 195; 60-64.

Gaber OA, Hathaway DK, Abell TL, Cardoso S, Hartwig MS, Gebely SE. Improved Autonomic and Gastric Function in Pancreas-Kidney vs. Kidney-Alone Transplantation Contributes to Quality of Life. Transplantation Proceedings. 1994: 26; 515-516.

Cutts TF, Luo J, Starkebaum W, Rashed H, Abell, TL. Is gastric electrical stimulation superior to standard pharmacologic therapy in improving GI symptoms, healthcare resources, and long-term healthcare benefits? Neurogastroenterology Motility 2005; 17: 35-43.

Curuchi Anand, Amar Al-Juburi, Babajide Familoni, Hani Rashed, Teresa Cutts, Nighat Abidi, William Johnson, Anil Minocha, Thomas L. Abell.Gastric Electrical Stimulation is Safe and Effective: A Long-Term Study for Patients with Drug Refractory Gastroparesis in Three Regional Centers. Digestion. 75 (2-3):83-89, May 18 2007.

Review Articles:

Cyclic Vomiting Syndrome: A Common, Under-Recognized Disorder.  Abstract — Purpose:  To increase recognition and present symptom assessment strategies for treating cyclic vomiting syndrome.Tonore, Thais; Spree, Danielle; Abell, Thomas JAANP-2014.

Abstracts (numerous—available on request)

Follow up: We continue to advocate for patients and all of the patient advocacy groups, with the Jennifer Jaffe center being a prototype for these organizations.

[updated  June 2014 by TLAbell]

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