Table 4.
Linking patient descriptions of the impact of PAH to LPH items
| Impact* | LPH item(s) assessing concept |
|---|---|
|
Activities of daily living |
|
| Jobs around the home (n=36) |
4. making it difficult to work around the house or in the garden? |
| Gardening (n=29) |
5. making it difficult to go anywhere away from home? |
| Personal care (n=21) |
|
| Doing shopping (n=15) |
|
| Driving (n=11) |
|
| Caring for children (n=6) |
|
| Laundry (n=6) |
|
| Vacuuming (n=6) |
|
| Looking after animals (n=5) |
|
|
Cognitive impacts |
|
| Memory (n=26) |
20. making it difficult for you to concentrate or remember things? |
| Concentration (n=24) |
|
| Focus (n=6) |
|
| Motivation (n=5) |
|
|
Emotional impacts |
|
| Worry (n=32) |
19. making you worry? |
| Depression (n=28) |
21. making you feel depressed? |
| Worried about future of PAH (n=18) |
|
| Upset (n=9) |
|
| Angry (n=8) |
|
| Fear (n=8) |
|
| Feeling low (n=7) |
|
| Stress (n=6) |
|
| Frustration (n=5) |
|
|
Physical impact |
|
| Climbing stairs (n=37) |
2. making you sit or lie down to rest during the day? |
| Walking (n=36) |
3. making it difficult to walk about or climb stairs? |
| Exercise/sports (n=34) |
4. making it difficult to work around the house or in the garden? |
| Leisure activities (n=33) |
5. making it difficult to go anywhere away from home? |
| Carrying things (n=23) |
7. making it difficult to have relationships or do things with your friends or family? |
| Lifting (n=17) |
9. making your recreational pastimes, sports or hobbies difficult? |
| Bending (n=8) |
|
| Physical movement (n=6) |
|
| Pregnancy (n=5) |
|
| Control of own life (n=26) |
18. making you feel a loss of self-control in your life? |
|
Impact on relationships |
|
| Relationships with friends and family (n=29) |
7. making it difficult to have relationships or do things with your friends or family? |
| Sexual activities (n=26) |
10. making your sexual activities difficult? |
| Doing things with friends and family (n=21) |
17. making you feel you are a burden to your family or friends? |
|
Having to rest during the day |
|
| Rest during the day (n=35) |
2. making you sit or lie down to rest during the day? |
| Rest during activities (n=20) |
|
| Rest after activities (n=10) |
|
|
Impact on sleep |
|
| Problems with sleep (n=22) |
2. making you sit or lie down to rest during the day? |
| Problems getting to sleep (n=11) |
6. making it difficult to sleep well at night? |
| Quality of sleep (n=9) |
|
| Problems staying asleep (n=8) |
|
| Position of sleep (n=5) |
|
|
Social impact |
|
| Social isolation (n=11) |
7. making it difficult to have relationships or do things with your friends or family? |
| Lack of support and recognition of symptoms by friends and relatives (n=11) |
17. making you feel you are a burden to your family or friends? |
| Socializing (n=7) |
|
| General social impact (n=6) |
|
|
Treatment impact |
16. giving you side effects from treatments? |
| Treatments intrusive and burdensome (n=10) |
15. costing you money for medical care? |
| Work impact (n=28) |
8. making it difficult to work to earn a living? |
|
Positive impacts |
|
| Support from friends and family (n=14) |
7. making it difficult to have relationships or do things with your friends or family? |
| Impact on eating/diet (n=31) |
11. making you eat less of the things you like? |
|
Impact on going out |
|
| Going out of the house (n=25) |
5. making it difficult to go anywhere away from home? |
| Travel (n=18) |
|
| Preventing from going out (n=10) |
|
| Going on vacation (n=7) |
|
|
Impact on others |
|
| Burden to others (n=20) |
7. making it difficult to have relationships or do things with your friends or family? |
| Dependence on others (n=10) |
17. making you feel you are a burden to your family or friends? |
| Impact on husband or wife (n=9) |
|
| Needing support (n=9) |
|
| Impact on family (n=6) |
|
|
Financial impact |
15. costing you money for medical care? |
| High cost of medication (n=20) |
* Impacts reported by 5 or more patients.