| Assistance |
All HS: Dependence is a significant HRQoL impact (individual living with LOPD/HCP)
HS2: Need help with something most days (individual living with LOPD)
HS4: Could not live independently (individual living with LOPD).
HS5: Depend on others for self-care (HCP) |
A statement on dependence on others for help was added to all health states
Frequency was varied by health state following feedback from individuals living with LOPD |
| Walking and stairs |
HS3: Less severe walking problems (individual living with LOPD)
HS4: Conflicting feedback (individuals living with LOPD) |
Severity of walking problems reduced in HS3 and HS4 from trial data draft using feedback from individuals living with LOPD |
| Balance |
HS2: Balance gradually gets worse (HCP), and a patient often fell, so avoided walking (individual living with LOPD)
HS4: Falling biggest HRQoL impact currently (individual living with LOPD) |
A statement on balance problems and fear of falling was added to all health states except wheelchair-dependent ones (HS5, HS6, HS7)
Severity varied by health state |
| Reaching |
HS3: Mixed ability (individual living with LOPD)
HS5: Very difficult (HCP)
HS6 (individual living with LOPD) and HS7 (HCP): Unable to reach above their head |
Severity increased to “unable to” following feedback from someone living with LOPD (HS6) and HCPs (HS7) |
| Self-care |
HS3: Some or mild difficulties (individual living with LOPD)
HS5 and HS6: Severe difficulties with self-care and need assistance (individual living with LOPD /HCP) |
Severity of self-care impact reduced in HS3 and increased in HS5 and HS6 |
| Showering |
HS5: Need to be transferred from wheelchair to shower (individual living with LOPD and HCP) |
Ability to shower separated from main self-care statement to highlight differences between health states
Inclusion of detail about needing a wheelchair adapted bathroom and hoist in wheelchair-dependent health states |
| Bladder control |
HS2: Mixed feedback (individual living with LOPD)
HS4: Have bladder control problems (individual living with LOPD/ HCP) |
A statement on bladder control problems added to all health states
Severity varied by health state |
| Eating |
HS2: Occasional difficulties preparing a meal (individual living with LOPD)
HS5: Conflict between able (HCP) and unable to prepare a meal (individual living with LOPD).
HS4 and HS6: Difficulties eating, sensation of choking, some difficulties swallowing (individual living with LOPD/HCP)
HS7: Swallowing difficulties and eating becomes a chore (HCP) |
In HS2 and HS5, difficulties preparing a meal were added
In HS4 and HS6, difficulties eating were added |
| Usual activities |
HS1: Slight difficulties but typically still in full-time employment (HCP)
HS2: Moderate difficulties, couldn’t pick up dropped things (individual living with LOPD)
HS3: Wide range of impact severity (individual living with LOPD)
HS5: Can work/study but not do chores (individual living with LOPD) |
Severity decreased from unable to do chores to able but with moderate difficulties in HS2, HS3, HS4
In HS5, overall statement severity reduced but inability to do chores maintained |
| Pain and discomfort |
HS1: Slight to moderate pain (individuals living with LOPD /HCP)
HS3: Range of impact severity (individuals living with LOPD) |
Severity was reduced in HS3 and HS4 |
Frustration, anxiety,
and depression |
All HS: Depression linked to chronic nature of condition and frustration common (HCP)
HS2: Very frustrated (individuals living with LOPD)
HS3: Not generally anxious just about, eg, going out (individual living with LOPD)
HS5: Anxiety, depression and frustration reported (individual living with LOPD) |
Frustration added to all health states following feedback from an HCP and individuals living with LOPD
Severity of anxiety and depression was reduced in HS3 and increased in HS5 |
| Sleep and fatigue |
HS1: Mild fatigue (HCP)
HS2: Nearly always fatigued, sometimes sleeps during day (individual living with LOPD)
HS3, HS4, and HS6: Sleep disturbance depending on ventilator adjustment (individual living with LOPD/HCP) |
Frequency of fatigue reduced in HS1
Sleep disturbance added to intermittent ventilatory support health states (HS3, HS4, HS6) |
| Socializing |
HS1: Mild physical limitation socializing only (HCP)
HS3 and HS4: Need to plan (individual living with LOPD)
HS6: Feel different from others and difficulty socializing (individuals living with LOPD) |
Problems socializing removed from HS1
Some difficulties added to HS3 and HS4 |
| Sport |
All HS: Different personal definitions of “sport” when evaluating ability (individual living with LOPD) |
Feedback from individuals living with LOPD on ability to do sport not comparable, so the statement was removed from all health states |