2013 Volume 14 Issue 1 Pages 37-40
We investigated 5,145 consultation records from nationwide intractable disease support centers, and examined the contents of 2,033 consultation records for the ten intractable diseases about which advice is most frequently requested. Diseases with the largest numbers of consultations were Parkinson-related diseases (PD) and amyotrophic lateral sclerosis (ALS), followed by ulcerative colitis (UC). Although the numbers of patients with PD and UC (number of claimant certification issues for medical care) were about 100,000, respectively, that of patients with ALS was about 8,300, being the smallest among the ten intractable diseases, showing no significant correlation between the number of patients and that of consultations. However, focusing attention on consultations from the patients themselves, a significant positive correlation was observed between the number of patients and that of direct consultations from the patients themselves (p<0.05).
For nine intractable diseases other than ALS, the percentages of consultations from the patients themselves were 49.3% to 81.4%, but the percentages of those requesting a consultation for ALS were 48.4% for support personnel (health and medical welfare professionals), 26.7% for family members, and 8.4% for patients themselves. Based on the consultation item tendencies, consultations for the ten diseases were classified roughly into three types：(1) working consultation (five diseases including UC)；(2) patient association activities (four diseases including PD)；and (3) recuperation environment adjustment (ALS), suggesting a relationship with disease types.
