Quality of life survey/ Post Whipple

[pauljonathan]

I felt my quality of life may be below that of other people who had experienced Whipple operations and the survey below helped back my opinion and argue for a change in intervention.

I have no medical training but I am posting the details here in case it may be useful to others; I hope so.

First I quote from a paper by Huang et al. :

"Researchers at John Hopkins University mailed surveys to Whipple operation survivors who had been operated on at Hopkins between 1981 and 1997. The questionnaire was broken down into sections that looked at physical abilities, psychological issues and social issues; an additional section evaluated functional capabilities and disabilities. Scores were reported as a percentile, with 100 percent being the highest possible score. The same questionnaire was then sent to a group of healthy individuals and a group of patients who had laparoscopic gallbladder removal.

Responses from this study at Johns Hopkins were tallied from 188 Whipple survivors, 37 laparoscopic gallbladder surgery patients and 31 healthy individuals. Whipple survivors on average rated their physical quality of life a 79, compared with an 83 among laparoscopic surgery patients and an 86 among healthy people. For psychological issues, Whipple survivors rated their quality of life to be a 79, compared with an 82 for laparoscopic surgery patients and an 83 among healthy people. Looking at social issues, Whipple survivors ranked their quality of life at an 81, compared with an 84 among laparoscopic surgery patients and an 83 among healthy individuals.”

(Source: Ann Surg. Jun 2000; 231(6): 890–898. “Quality of Life and Outcomes After Pancreaticoduodenectomy”, John J. Huang, MD et al. http://www.surgery.usc.edu/divisions/tumor/pancreasdiseases/web%20pages/pancreas%20resection/whipple%20operation.html )

From that paper I found that the results from the John Hopkins study were drawn from

the Quality of Life survey, designed by the Beckman Research Institute.

(Source: Dr B. Ferrell et al., the Beckman Research Institute, http://prc.coh.org/QOL-CS.pdf )

I decided to complete the same survey after having communicated with the author, Dr B. Ferrell, to confirm that the survey is the correct one.

For interest, my results were (Whipple survivors average shown in brackets): physical well-being 84% (79%); psychological well-being 57% (79%) ; social 61% (81%). I still do not understand my physical well-being result, but the fact that the psychological and social aspects of my quality of life showed to be around 20% less than the average post-Whipple patient has helped back my claim for a change in treatment.