Table 8 Issues marked as important by ≥ 60% PSC participants
Categories | Issues |
|---|---|
Overall QoL | Impact of PSC on quality of life |
Physical health | Feeling unwell |
Never feeling 100% | |
Feeling exhausted, physically and/or mentally | |
Itch | |
Itching through the night | |
Jaundice | |
Cholangitis flare-ups | |
Emotional health | Ability to enjoy life |
Feeling worried about PSC | |
Concerned about being a burden on others | |
Concerned about eventual death due to PSC | |
Cognitive health | Ability to concentrate |
Social functioning | Ability to do usual activities |
Ability to lead a normal life | |
Impact of PSC on social life | |
Close relationships | Impact of PSC on family life |
Impact of PSC on partner | |
People thinking PSC is due to alcohol | |
Information and uncertainty | Uncertainty about the impact of PSC on life |
Uncertainty about the impact of PSC on my family | |
Uncertainty about when or if I will need a liver transplant | |
Concerned about how PSC will affect the future | |
Concerned about cholangitis attacks | |
Concerned about liver transplant | |
The variability of symptoms | |
Work, money, education | Ability to work |
Losing confidence about being able to do a job full-time | |
Impact of PSC on financial situation | |
Experience of care and treatment | Unplanned hospital visits |