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

Journal of Patient-Reported Outcomes

Table 2 Aims of discussions with PwPSC and clinicians, and data sources for assessing each aim

Aim	Data source
Relevance and importance of issues	Quantitative responses on issues list
Relevance and importance of issues	Qualitative responses regarding issues selected
Phrasing of issues	Qualitative responses regarding phrasing and preferences
Phrasing of issues	Qualitative responses regarding whether issues were appropriate (e.g. anything upsetting)
Breadth of coverage	Qualitative responses regarding whether any issues were missing