A National Survey of Hemochromatosis Patients

Article Figures & Data

Table 1. Adjusted Logistic Regressions^* for Laboratory Tests and Procedures

Ferritin level
Complaints of fatigue
Yes	3.00 (1.77–5.08)
No	1.00 (—)
Complaints of painful joints
Yes	2.20 (1.30–3.73)
No	1.00 (—)
Transferrin saturation
Complaints of fatigue
Yes	1.44 (1.10–1.89)
No	1.00 (—)
Complaints of painful joints
Yes	1.46 (1.12–1.92)
No	1.00 (—)
Liver biopsy
Complaints of fatigue
Yes	1.20 (0.89–1.60)
No	1.00 (—)
Complaints of painful joints
Yes	1.44 (1.08–1.92)
No	1.00 (—)
Genetic testing
Complaints of fatigue
Yes	1.26 (0.89–1.79)
No	1.00 (—)
Complaints of painful joints
Yes	1.30 (0.92–1.84)
No	1.00 (—)

Table 2. Usefulness of Resources and Information Sources

	Extremely Useful	Very Useful	Somewhat Useful	Not Useful	Never Used Them
Resources
Health care providers	21.0	31.9	39.7	6.6	0.8
Community-based groups	25.0	24.5	13.7	2.0	34.8
Internet	28.3	32.2	25.9	1.3	12.4
University/ academic medical centers	6.0	8.3	9.4	2.6	73.7
Information sources
Print	18.6	34.0	31.4	1.6	14.4
Video	2.1	4.4	7.2	2.0	84.3
Patient support groups	3.7	5.2	4.2	2.3	84.6
Live patient education seminars	3.2	3.7	2.1	1.3	89.7

Table 3. Interest in Learning More about Specific Hereditary Hemochromatosis Topics

	Extremely Interested	Very Interested	Somewhat Interested	Not Interested
Signs and symptoms	38.3	27.7	23.6	10.4
Cause and risk factors	43.4	30.4	18.3	7.9
Information for family members	40.7	27.4	19.7	12.2
Diagnosis	36.3	28.0	21.9	13.8
Treatment	48.5	28.5	15.3	7.7
Self-care tips	55.7	29.0	10.1	5.2
Diet	54.2	26.7	13.8	5.4
Preventing complications	63.0	25.2	8.2	3.6
Genetics	45.4	26.8	20.1	7.7