Table 2.
Thematic breakdown of focus group data across all focus groups
| Overall Thematic Breakdown |
||||||
|---|---|---|---|---|---|---|
| HRQOL Domain and Subdomains |
Example Quotation | At-Risk/ Prodromal Focus Groups |
Symptomatic Focus Groups |
Caregiver Focus Groups |
Clinician Focus Groups |
Total Across All Groups |
| EMOTIONAL HEALTH | 30.1 | 22.8 | 28.0 | 28.1 | 27.6 | |
| Anxiety/Fear | I just feel anxious | 17.4 | 15.2 | 4.8 | 14.6 | 13.7 |
| Stigma | We were not supposed to tell anybody, ‘cause my dad was afraid he was gonna lose his job because of insurance and everything |
11.8 | 11.1 | 19.6 | 6.3 | 12.7 |
| Anger | I have anger problems | 10.5 | 11.1 | 13.6 | 12.6 | 11.6 |
| Psychiatric/Behavioral changes |
there is no gatekeeper anymore--there’s no filter | 10.4 | 3.7 | 20.7 | 28.9 | 13.6 |
| Positive Psychological Function | to appreciate each day that you have | 10.3 | 16.7 | 7.4 | 11.3 | 11.3 |
| Resilience | it’s just trying to live every day, you know as best you can |
10.0 | 9.8 | 4.8 | 1.7 | 7.7 |
| Depression | I’ve been crying about this a lot lately | 7.2 | 11.3 | 10.5 | 9.0 | 9.1 |
| Emotional Roadblocks | there’s always an excuse for everything | 6.6 | 4.1 | 7.6 | 5.3 | 6.0 |
| Grief/Loss | I used to have a life before this | 4.8 | 8.9 | 1.4 | 2.7 | 4.7 |
| Self-Evaluation | I wasn’t good enough | 1.1 | 0.9 | 3.1 | 0.7 | 1.4 |
| SOCIAL PARTICIPATION | 27.5 | 30.9 | 27.0 | 19.8 | 27.4 | |
| Interpersonal Relationships |
I should be able to just to enjoy my family | 54.0 | 43.6 | 54.0 | 42.0 | 49.5 |
| Leisure | we play cards | 25.5 | 32.7 | 34.1 | 36.3 | 30.7 |
| Vocation | she couldn’t hold a job | 16.1 | 14.6 | 2.0 | 10.4 | 12.0 |
| Independence/Autonomy | it’s hard for me to do things on my own now | 3.4 | 7.3 | 7.4 | 8.5 | 5.9 |
| PHYSICAL HEALTH | 24.2 | 24.1 | 27.0 | 33.7 | 26.0 | |
| Gene Testing | from the beginning when they tested for the marker I was against it, dead set because there’s nothing that they could do for you |
25.6 | 9.6 | 11.5 | 7.5 | 15.1 |
| Involuntary Movements/Chorea |
she used to try and shave her legs and she’d end up with cuts on her face |
9.6 | 8.9 | 6.0 | 11.4 | 8.9 |
| Mobility/Ambulation | I have problems walking | 9.2 | 10.0 | 11.1 | 13.3 | 10.5 |
| Speech/Swallowing Difficulties |
choked early on, on things | 8.6 | 9.8 | 12.5 | 21.6 | 12.0 |
| Medications | now I’m on medicine and it really helps me | 7.9 | 14.2 | 13.3 | 6.4 | 10.6 |
| Health Promotion | I’m doing what I can to stay happy and healthy and stay in shape |
7.7 | 9.6 | 6.2 | 6.4 | 7.6 |
| ADLS | I know he has a hard time dressing | 5.7 | 7.0 | 7.0 | 9.4 | 7.0 |
| Upper Extremities | she may not be able to unscrew this bottle of water anymore |
5.1 | 8.2 | 6.0 | 5.3 | 6.2 |
| Weight Loss | she had trouble keeping the weight on through the whole fidgeting and everything |
4.7 | 5.1 | 4.2 | 2.8 | 4.4 |
| Pain | my hands hurt | 0.8 | 0.2 | 1.4 | 1.1 | 0.8 |
| Fatigue | they feel more exhausted at the end of the day | 0.3 | 1.2 | 0.0 | 0.8 | 0.6 |
| Sexual Functioning | being able to have a fulfilling sex life | 0.1 | 1.8 | 2.4 | 1.7 | 1.3 |
| COGNITIVE HEALTH | 7.1 | 13.8 | 10.7 | 12.1 | 10.4 | |
| Learning/Memory | he lost that problem solving ability | 23.7 | 19.3 | 10.5 | 11.6 | 17.3 |
| Executive Function | memory, you know, like I’ll put the keys somewhere and forget where I put it |
21.9 | 37.7 | 44.5 | 40.3 | 35.7 |
| Communication/ Comprehension |
I couldn’t finish a conversation | 14.4 | 10.1 | 7.9 | 16.3 | 11.6 |
| Attention/Concentration | I’ll lose my train of thought | 9.8 | 5.8 | 1.0 | 2.3 | 5.2 |
| Compensatory Techniques |
just trying to keep my brain active | 6.5 | 8.6 | 2.1 | 2.3 | 5.7 |
| END OF LIFE ISSUES | 10.3 | 8.4 | 7.7 | 6.3 | 8.7 | |
| Planning | I went out and got long-term care insurance at the ripe old age of 32 |
53.7 | 52.0 | 47.9 | 29.9 | 49.9 |
| Interactions with others With HD |
it’s different when it’s personal, a person in your family | 34.1 | 33.3 | 29.6 | 10.4 | 30.8 |
| Forward Comparison | knowing that this is gonna be me | 5.5 | 6.1 | 4.9 | 11.9 | 6.1 |
Percentages for Domains reflect the total percentage of comments related to this specific domain (Domain percentages should sum to 100 with rounding); percentages within each subdomain reflect the percentage of comments within each Domain (should sum to ~100).