Table 2.
Self-Report and Physical Findings of Symptoms and Incidents Related to X-Linked Hypophosphatemia (XLH)
| Self-report of: | Incident/n |
|---|---|
| Bone pain | 9/9 |
| Arthritis and bone spurs (enthesophytes) | 9/9 |
| Bony cysts in hands or feet | 7/9 |
| Spinal stenosis | 5/9 |
| Physical findings fractures present at site visit | 6/9 |
| Physical findings unreported/unaware of fractures present at site visit | 2/9 |
| Bone fracture from or causing a fall | 8/8 |
| Surgery as result of fall | 6/7 |
| Early retirement/Condition required leaving work | 5/7 |
| Labeled/Told they were “drug-seeking” | 4/6 |
| Reported providers who were unable to appropriately treat them | 9/9 |
| Fear of falling* | 4/6 |
| Fear of falling impacting social activities* | 2/4 |
| Have or are using ambulatory assistive device (cane, walker, etc) | 8/8 |
*
During psychosocial interviews, incidents emerged related to fear of falling based on questions about daily activities and social life and how XLH impacted decisions; no prompts were used regarding fear of falling.