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Table 8 Issues marked as important by ≥ 60% PSC participants

From: Quality of life (QoL) for people with primary sclerosing cholangitis (PSC): a pragmatic strategy for identifying relevant QoL issues for rare disease

Categories Issues
Overall QoL Impact of PSC on quality of life
Physical health Feeling unwell
Never feeling 100%
Feeling exhausted, physically and/or mentally
Itching through the night
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