Progressive Supranuclear palsy: A Survey of the Disease Course (Supplement)

Pilar Santacruz, M.A.
Cognitive Neuroscience Section, NINDS, NIH

Bob Uttl, ph.D.
Henry M. Jackson Foundation and
Cognitive Neuroscience Section, NINDS, NIH

Irene Litvan, M.D.
Neuropharmacology Unit,
Henry M. Jackson Foundation and
Medical Neurology Branch, NINDS, NIH

Jordan Grafman, ph.D.
Cognitive Neuroscience Section, NINDS, NIH

Adapted from material prepared for an article entitled "Progressive Supranuclear Palsy: A survey of the disease course" by Santacruz p, Uttl B, Litvan I, Grafman J. published in Neurology; June 1998. This material was not published as part of the article (publisher's decision).

The following table (Table 1) shows, for the living patients only, Kaplan-Meier product estimates of the proportions of pSp patients affected with each symptom/sign by yearly intervals starting 5 years prior to diagnosis. The symptoms and signs are ordered by problem area and by proportion of patients who experienced the symptoms at the time of diagnosis (i.e., 0 years from diagnosis). The shaded portion represents the clinical stage of the disease – from the estimated time of the principal symptoms onset until 5 years after the diagnosis (the median principal symptom onset to diagnosis time lag was 2.1 years, thus, the symptom onset can be placed approximately 2 years ahead of diagnosis). To illustrate, the table shows that problems with balance appeared in 16% of patients 4 years prior to diagnosis, 28% of patients 3 years prior to diagnosis, 41% of patients 2 years prior to diagnosis (about the time of principal symptoms onset), 55% of patients 1 year prior to diagnosis, 72% of patients at the time of diagnosis, and 96% of patients who survived for 5 years following the diagnosis.

Kaplan-Meier product limit estimates of proportions of pSp patients affected with each symptom/sign as a function of time elapsed from the diagnosis, for the living patients only. Table also includes proportion of patients affected by each symptom (separately for living and deceased samples).

Figure 1 Figure 1 shows selected data from Table 1; It shows Kaplan-Meier product estimates of the proportions of PSP patients affected with each symptom/sign by yearly intervals starting 5 years prior to diagnosis. Only data for two leading symptoms and signs from each problem area in Table 1 are shown in the figure.

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