What You Said: "The Impact of ITP" Questionaire Findings

Thank you to those who shared your ITP experiences through our online survey, and thanks to GlaxoSmithKline for funding and developing the questionnaire. Download PDF

Health-Related Quality of Life

A total of 1,002 ITP patients and 1,031 age and gender-matched controls answered questions from three standard quality-of-life questionnaires plus additional questions in a survey funded by Amgen. Selected results were published in three journal articles. Below are links to the abstracts. Contact PDSA for copies of the articles.

  • “Impact of ITP on physician visits and workplace productivity.”
     View Abstract

  • “Health-related quality of life of immune thrombocytopenic purpura patients: results from a web-based survey.”
     View Abstract

  • “Impact of corticosteroid-related symptoms in patients with immune thrombocytopenic purpura: results of a survey of 985 patients.”
     View Abstract

Survey of Non-Traditional Treatments of ITP

Introduction

From August 2001 through December 2001, we collected 916 responses from our Survey of Non-traditional Treatments of ITP.  This survey was created by James Bussel, MD of the Weill Medical Center of Cornell University and the staff of the Platelet Disorder Support Association (PDSA) and placed on the PDSA website to gather replies.

Note: In the survey, the term 'non-traditional' is synonymous with 'complementary.'  The survey also collected data on 'traditional' (conventional) therapies for comparison.

(Since these results are from a web-based survey, there is no medical validation of the results. For advice on your unique medical condition, please consult your health care provider. No portion of these results may be reproduced without express written consent of PDSA.)

Hematologist Support

Hematologist Support

Hematologist Communication

hematologist_comm

Individual Treatment Philosophy

ind_treatment_phil

Platelet Counts

Platelet Counts

Symptoms

Symptoms

Gender

Gender

Age at Diagnosis

Age at Diagnosis

Result 2 - Cytoxan, Cyclosporine, IVIG, Danazol

 

Selected Treatment Results

CYTOXAN5.68% CYCLOSPORINE3.17% IVIG51.97% DANAZOL14.19%
 Platelets   Platelets   Platelets   Platelets 
  › Some59.62%   › Some62.07%   › Some84.66%   › Some54.62%
  › Sustained17.31%   › Sustained24.14%   › Sustained18.07%   › Sustained13.85%
 Bleeding   Bleeding   Bleeding   Bleeding 
  › Some61.54%   › Some65.52%   › Some72.89%   › Some53.85%
  › Normal25.00%   › Normal34.48%   › Normal37.18%   › Normal18.46%
 Side Effects   Side Effects   Side Effects   Side Effects 
  › Some73.08%   › Some62.07%   › Some57.35%   › Some76.15%
  › Severe11.54%   › Severe17.24%   › Severe11.55%   › Severe20.77%

 

 

Result 3 - Prosorba, Rituxan, Splenectomy, Vinca Alkaloids

 

Selected Treatment Results

PROSORBA*1.42% RITUXAN3.28% SPLENECTOMY35.63% VINCA ALKALOIDS9.40%
 Platelets   Platelets   Platelets   Platelets 
  › Some53.85%   › Some60.00%   › Some69.63%   › Some54.65%
  › Sustained30.77%   › Sustained13.33%   › Sustained40.80%   › Sustained10.47%
 Bleeding   Bleeding   Bleeding   Bleeding 
  › Some61.54%   › Some53.33%   › Some65.44%   › Some48.28%
  › Normal23.08%   › Normal10.00%   › Normal39.76%   › Normal16.09%
 Side Effects   Side Effects   Side Effects   Side Effects 
  › Some53.85%   › Some53.33%   › Some43.56%   › Some75.58%
  › Severe7.69%   › Severe3.33%   › Severe4.91%   › Severe26.74%
           

* NOTE: The Prosorba Column is no longer recommended for the treatment of ITP.

 

Result 4 - Acupressure, Acupuncture, Vitamin C, Vitamin K

 

Selected Treatment Results

ACUPRESSURE2.18% ACUPUNCTURE6.00% VITAMIN C47.93% VITAMIN K6.88%
 Platelets   Platelets   Platelets   Platelets 
  › Some30.00%   › Some30.91%   › Some34.85%   › Some26.98%
  › Sustained5.00%   › Sustained7.27%   › Sustained10.48%   › Sustained7.94%
 Bleeding   Bleeding   Bleeding   Bleeding 
  › Some35.00%   › Some27.27%   › Some32.35%   › Some31.75%
  › Normal10.00%   › Normal5.45%   › Normal11.16%   › Normal15.87%
 Side Effects   Side Effects   Side Effects   Side Effects 
  › Some0.00%   › Some12.73%   › Some7.52%   › Some1.59%
  › Severe0.00%   › Severe0.00%   › Severe1.82%   › Severe0.00%
           

 

Result 5 - Moducare, Collostrum, Chlorophyll, Reiki

 

Selected Treatment Results

MODUCARE2.62% COLOSTRUM2.29% CHLOROPHYLL5.46% REIKI4.70%
 Platelets   Platelets   Platelets   Platelets 
  › Some45.83%   › Some19.05%   › Some30.00%   › Some39.53%
  › Sustained16.67%   › Sustained4.76%   › Sustained12.00%   › Sustained9.30%
 Bleeding   Bleeding   Bleeding   Bleeding 
  › Some45.83%   › Some33.33%   › Some30.00%   › Some34.88%
  › Normal16.67%   › Normal19.05%   › Normal16.00%   › Normal18.60%
 Side Effects   Side Effects   Side Effects   Side Effects 
  › Some0.00%   › Some0.00%   › Some8.00%   › Some2.33%
  › Severe0.00%   › Severe0.00%   › Severe0.00%   › Severe0.00%
           

 

Result 6 - Magnets, Healing Touch, Blood Well/Restore Immune, Macrobiotic

 

Selected Treatment Results

MAGNETS2.51% HEALING TOUCH5.13% BLOOD WELL/ RESTORE IMMUNE3.38% MACROBIOTIC2.84%
 Platelets   Platelets   Platelets   Platelets 
  › Some13.04%   › Some21.28%   › Some61.29%   › Some42.31%
  › Sustained8.70%   › Sustained12.77%   › Sustained22.58%   › Sustained3.85%
 Bleeding   Bleeding   Bleeding   Bleeding 
  › Some13.04%   › Some36.17%   › Some61.29%   › Some42.31%
  › Normal0.00%   › Normal6.38%   › Normal35.48%   › Normal7.69%
 Side Effects   Side Effects   Side Effects   Side Effects 
  › Some4.35%   › Some0.00%   › Some0.00%   › Some15.38%
  › Severe0.00%   › Severe0.00%   › Severe0.00%   › Severe7.69%
           

 

Result 8 - Prayer, Meditation, Visualization, Psychotherapy, Positive Thinking

 

Selected Treatment Results

PRAYER40.92% MEDITATION11.27% VISUALIZATION9.86% PSYCHOTHERAPY6.36% POSITIVE THINKING37.91%
 Platelets   Platelets   Platelets   Platelets   Platelets 
  › Some48.66%   › Some43.69%   › Some42.22%   › Some24.14%   › Some41.45%
  › Sustained24.87%   › Sustained14.56%   › Sustained14.44%   › Sustained6.90%   › Sustained19.42%
 Bleeding   Bleeding   Bleeding   Bleeding   Bleeding 
  › Some49.20%   › Some43.69%   › Some38.46%   › Some24.14%   › Some43.77%
  › Normal24.33%   › Normal16.50%   › Normal12.09%   › Normal10.34%   › Normal18.84%
 Side Effects   Side Effects   Side Effects   Side Effects   Side Effects 
  › Some4.28%   › Some4.85%   › Some3.41%   › Some8.62%   › Some6.07%
  › Severe1.34%   › Severe0.00%   › Severe0.00%   › Severe0.00%   › Severe1.73%
              

 

Result 7 - Eat Right, Zone Diet, Atkin's Diet, Weight Watchers

 

Selected Treatment Results

EAT RIGHT FOR YOUR TYPE9.96% ZONE DIET1.09% ATKIN'S DIET4.81% WEIGHT WATCHERS0.76%
 Platelets   Platelets   Platelets   Platelets 
  › Some35.16%   › Some0.00%   › Some11.36%   › Some28.57%
  › Sustained12.09%   › Sustained0.00%   › Sustained2.27%   › Sustained14.29%
 Bleeding   Bleeding   Bleeding   Bleeding 
  › Some37.36%   › Some10.00%   › Some20.45%   › Some14.29%
  › Normal10.99%   › Normal0.00%   › Normal2.27%   › Normal0.00%
 Side Effects   Side Effects   Side Effects   Side Effects 
  › Some6.59%   › Some10.00%   › Some9.09%   › Some0.00%
  › Severe0.00%   › Severe0.00%   › Severe9.09%   › Severe0.00%
           

 

Result 1 - Win Rho, Imuran, Colchicine, Prednisone

 

Selected Treatment Results

WinRho27.07% IMURAN6.88% COLCHICINE*1.31% PREDNISONE75.66%
 Platelets   Platelets   Platelets   Platelets 
  › Some71.77%   › Some49.21%   › Some41.67%   › Some82.40%
  › Sustained8.47%   › Sustained15.87%   › Sustained0.00%   › Sustained19.34%
 Bleeding   Bleeding   Bleeding   Bleeding 
  › Some55.65%   › Some41.27%   › Some58.33%   › Some72.87%
  › Normal22.98%   › Normal19.05%   › Normal25.00%   › Normal33.19%
 Side Effects   Side Effects   Side Effects   Side Effects 
  › Some-51.61%   › Some52.38%   › Some33.33%   › Some92.21%
  › Severe-10.89%   › Severe9.52%   › Severe0.00%   › Severe37.66%

* NOTE: Colchicine is no longer recommended for the treatment of ITP.

 

Explanation of Treatment Result Categories

N - The number of people responding that answered "tried to use" or "currently using" for a particular treatment (Ns) Platelets: some - The percent of Ns that answered "Moderate effect (had a moderate or short lived positive effect [on counts])" for a particular treatment or "Sustained effect (had a long term positive effect on counts) for a particular treatment Platelets: sustained - The percent of Ns that answered "Sustained effect (had a long term positive effect on counts) for a particular treatment Bleeding: some - The percent of Ns that answered "Some - Had some positive effect [on bleeding]" for a particular treatment or "Normal - Bleeding returned to normal" for a particular treatment Bleeding: normal - The percent of Ns that answered "Normal - Bleeding returned to normal" for a particular treatment Side Effects: some - The percent of Ns that answered " Mild - Minor and temporary side effects" or "Moderate - Difficult side effects" for a particular treatment or "Severe - Extreme side effects" for a particular treatment Side Effects: severe - The percent of Ns that answered "Severe - Extreme side effects" for a particular treatment

Subcategories

Survey of Non-Traditional Treatments of ITP