QOL/PRO Working Group

QUALITY OF LIFE/PATIENT REPORTED OUTCOMES WORKING GROUP

Briefly: Measurements of quality of Life (QOL) , coupled with patient reported outcome (PRO) have been a major focus for the last 25  years. An outline of what has been worked on follows

History: The QOL/PRO working group started over 25 years ago in Memphis TN. The hospital at that time was a transplant and research hospital staffed by academic departments in a Medical School. Extensive training and work had preceded this groups’ inception by those involved in the evolving field of behavioral medicine, which by the mid-1980’s was becoming a more mature field.

Projects:  The original project was a prospective evaluation of psychological, behavioral and quality of life measures in a cohort of patients with chronic gastrointestinal conditions. Some of the original and follow up work was published (see below) but much of it is ongoing, esp. for long-term measurements.

The next project involved patient support groups and involved nearly 100 focus groups with the same patient population over a 12-year period.

Based on these focus groups, in which the patients highlighted their poor quality of life in very specific patient reported outcomes, a number of ideas emerged.

One of those ideas, which has been explored since the late 1990s, involved the creation of new and simplified categorical measures of illness, based on what patients report but supplemented by the assessment of 3 factors by the patients provider: their severity of illness, the patients organ systems involved and the intensity  of services being delivered. This system, originally designated as A Diagnostic and Prognostic Score (ADAPS) can be classified as a categorical measure or Investigator Derived Independent Outcome Measure (or IDIOMS). The use of these measures was published after it’s initial experience, as noted below, but is the subject of ongoing study.

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.

Hathaway DK, Abell TL, Cardoso S, Hartwig MS, Gebely SE, Gaber AO: Improvement in autonomic and gastric function following pancreas-kidney versus kidney-alone transplantation and the correlation with quality of life. Transplantation 1994: 57; 816-822.

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, Abell TL, Karas JG, Kuns J. Symptom Improvement from prokinetic therapy corresponds to improved quality of life in patients with severe dyspepsia. Dig Dis Sci. 1996: 41; 1369-1378.

Rashed H, Cutts T, Abell TL, Cowings P,  Toscano W, El-Gammal A, Adl D: Predictors of response to a behavioral treatment in patients with chronic gastric motility disorders.  Dig Dis Sci. 2002: 47: 1020-1026.

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.

Al-Juburi A, Granger S, Barnes J, Voeller G, Beech D, Amiri H, Abell TL. Laparoscopy shortens length of stay in patients with gastric electrical stimulators. JSLS. 2005; 9:305-310.

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

Abell TL, Familoni B, Voeller G, Werkman R, Dean P, Waters B, Smalley D, Salameh JR.  Electrophysiologic, morphologic and serologic features of chronic unexplained nausea and vomiting:  Lessons learned from 121 consecutive patients.  Surgery. 2009: 145 (5); 476-485

Review Articles and Book Chapters:

Cutts T, Abell TL. Quality of life measures in gastroenterology. Motility Issue 26, June 1994, pp. 4-7.

Hammer J, Abell T, Cutts TF, Talley NJ. Epidemiology of disordered gastrointestinal function and impact of chronic gastrointestinal symptoms on quality of life. IN: Gastrointestinal Function in Diabetes Mellitus. Horowitz, M Samsom M, Eds. John Willey & Sons, West Sussex, England, pp. 127. 2004.

Abstracts (numerous—available on request)

Ongoing work: The current goals is to explore the applicability of these post-PRO measures in primary care, by targeting chronic illnesses, esp. by primary care providers such as Internists and Hospitalists, Pediatricians, Family Physicians, Emergency Medicine physicians as well as by Nurse-practitioners and Physician Assistants.

 

[updated  24 July  2014 by TLAbell]

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