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 3 Stage 1 decision rules for excluding issues from the full issues list

Decision rule	Description	Examples
1. Overlapping or overly specific [1]	Where multiple issues covered the same concept, issues which were overly specific were excluded. This reduced the number of included issues without excluding the underlying concept from the issue list	‘Frequent urination at night’ excluded as covered by ‘frequent urination’
1. Overlapping or overly specific [1]		‘Ability to get all work jobs done’ excluded as covered by ‘ability to work’
2. Double-barrelled issue [2, 3]	Any issue made up of two concepts contingent on one another were excluded. These issues ask two separate questions and are therefore difficult to respond to because a single response option may not be suitable	‘I feel frustrated that I can't go out and enjoy myself’
2. Double-barrelled issue [2, 3]		‘I feel so tired I have to go to bed early’
3. Phrased in a colloquial manner [2, 3]	Issues using colloquial language were excluded. The use of colloquialisms or common idioms is problematic because they may not be understood uniformly and the literal meaning may differ from the intended meaning	‘Feeling off my food’
		‘Feeling worn out’
		‘My future seems dark’
4. Phrased in a complex manner [2]	Issues phrased in a complex manner were excluded, because they require a high level of cognitive skill to comprehend, and risk being misinterpreted	‘My daily activities are hampered by concerns about the impact of my condition on my family situation’