Page Two: The Patient Input Forum
Note: Shown here but not visible in the actual questionnaire page is the scoring sheet for calculator. Here is the model for what this page might look like:
(Copy – DRAFT)
The Spectrum SCT Timing Tool (SSTT) can provide you with a basic validated signal calibrating your need to consult a stem cell transplant team. To get started, all you’ll need is a copy of your latest Complete Blood Count. The SSTT gives you the option to consider additional risk factors from the DIPSS+ scale and the World Health Organization criteria. Your basic risk score, however, is derived from the Dynamic International Prognostic Socring System (DIPSS ).
To further refine your current risk status, you may require a bone marrow biopsy and a cytogenetic analysis which may already have been ordered by your physician
Answer all questions you can. In reviewing results with your hematologist ask about the need to consider any additional data.
(All Yes and No questions. Scoring NOT VISIBLE ON PAGE)
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DIPSS SCORING SYSTEM
Age Are you 65 or younger? 65- 75? <65 65-70 >70
(Weight loss, Fever, Night sweats) N Y
Hemoglobin g/dL; <10; ≥ 10 <10
Leukocytes higher than 109/L <25 >25
Circulating Blasts, <1. ≥1%
Karyotype* _8, _7/7q-, i(17q), _5/5q-, 12p-,
inv(3), or 11q23 rearrangement. Y
Transfusion status* RBC dependent, Y
Thrombocytopenia* ( < Platelets <100 x 109/L) Y
World Health Organization (optional scale)
Grade 0-3: Grade 0 and 1, reticulin; Y
Grade 2. Dense reticulin with collagen or osteosclerosis Y.
Grade 3. Same + coarse bundles of thick fibers Y
High Risk mutations*ASXL1, EZH1, IDH1/2
and SRSF2M, Triple negative (MPL, JAK2, CALR ) Discuss with physician.
(NOTE: Need to resolve scoring and OS differences between DIPSS and DIPSS+)
DIPPS+ Scoring: Prognosis based on 6 point scoring system:
If score is 0: Patient is considered low risk. Median survival is estimated to be 180 months (DIPSS: 11.3 years)
If score is 1: Patient is considered intermediate-1 risk. Median survival is estimated to be 80 months (DIPSS: 7.9 years)
If score is 2-3: Patient is consideredintermediate-2 risk. Median survival is estimated to be 35 months. (DIPSS: 4 years).
If score is 4 or more: Patient is considered high risk. Median survival is estimated to be 16 months(DIPSS: 2.3 years).
DIPSS scoring differs. Fewer factors, different median survival.
-Adverse risk factors: age older than 65 years, hemoglobin lower than 10 g/dL, leukocyte count higher than 25 x109/L, circulating blasts > 1%, and constitutional symptoms. Each one of these risk factors is assigned 1 adverse point. The presence of 0, 1, 2, and > 3 adverse points defines low, intermediate-1, intermediate-2, and high-risk disease with corresponding median survivals of 11.3, 7.9, 4, and 2.3 years