Table 3.
Thematic overlap among patient reported outcome measurement initiatives
| Domain and Subdomains | Overlap with Neuro-QOL |
Overlap with PROMIS |
Overlap with TBI-QOL |
Overlap with SCI-QOL/ SCI-CAT |
Possible Inclusion on HD-QOL (>5% endorsement) |
|---|---|---|---|---|---|
| EMOTIONAL HEALTH | |||||
| Anxiety/Fear | X | X | X | X | X |
| Stigma | X | X | X | X | |
| Anger | X | X | X | ||
| Psychiatric/Behavioral Changes | X | X | X | ||
| Positive Psychological Function | X | X | X | X | |
| Resilience | X | X | X | ||
| Depression | X | X | X | X | X |
| Emotional Roadblocks | X | ||||
| Grief/Loss | X | X | X | ||
| Self-Evaluation | X | X | |||
| SOCIAL PARTICIPATION | |||||
| Interpersonal Relationships | X | X | X | X | X |
| Leisure | X | X | X | X | X |
| Vocation | X | X | X | X | X |
| Independence/Autonomy | X | X | X | ||
| PHYSICAL HEALTH | |||||
| Gene Testing | X | ||||
| Involuntary Movements/Chorea | X | ||||
| Mobility/Ambulation | X | X | X | X | X |
| Speech/Swallowing Difficulties | X | ||||
| Medications | X | ||||
| Health Promotion | X | ||||
| ADLS | X | X | X | X | X |
| Upper Extremities | X | X | X | X | X |
| Weight Loss | |||||
| Pain | X | X | X | ||
| Fatigue | X | X | X | ||
| Sexual Functioning | X | X | X | ||
| COGNITIVE HEALTH | |||||
| Learning/Memory | X | X | X | X | |
| Executive Function | X | X | X | X | |
| Communication/Comprehension | X | X | X | X | |
| Attention/Concentration | X | X | X | X | |
| Compensatory Techniques | |||||
| END OF LIFE ISSUES | |||||
| Planning | X | ||||
| Interactions with others with HD | X | ||||
| Forward Comparison | X | ||||
TBI-QOL = traumatic brain injury patient reported outcome measurement initiative
SCI-QOL/SCI-CAT = spinal cord injury patient reported outcome measurement initiative
Bolded items are subdomains that may warrant additional item development for use in clinical trials