Patient Preference Assessment Reveals Disease Aspects Not Covered by Recommended Outcomes in Polymyositis and Dermatomyositis

Table 2

The highest prioritized MACTAR disabilities identified by 28 patients with PM/DM and their representation in the HAQ and the MAP.

MACTAR disabilities	𝑛^a (men/women)	Disabilities included in the HAQ	Disabilities included in the MAP
Sexual activity	11 (6/5)	Not	Not
Walks/walking	9 (6/3)	Included	Included
Social activities	9 (4/5)	Not	Included
Sleep	8 (2/6)	Not	Not
Bicycling	7 (2/5)	Not	Not
Vacuuming	6 (1/5)	Included	Included
Getting up from ground/floor	5 (3/2)	Partly	Not
Relations to child/spouse	5 (3/2)	Not	Not
Carpentry	5 (3/2)	Not	Partly
Gardening	5 (3/2)	Not	Included

Disabilities identified by less than five individuals: driving a car, playing with child/grandchild, carrying/lifting heavy objects, walking uphill, climbing stairs, running/jogging, skiing (𝑛=4), opening jars/bottles, lifting a frying pan, holding a dish brush for longer time, putting up curtains, taking down a lamp from ceiling, washing hair, traveling (𝑛=3), swallowing/eating, dancing, getting out of a car/boat, putting on socks/shoes, playing golf, working activities, hiking, going to the movies/sports events (𝑛=2), doing buttons, stress management, taking up a boat from water, dressing, playing tennis, climbing a ladder, playing guitar, walking on icy ground, using public transportation, playing soccer, and fatigue (𝑛=1).
a Number of patients identifying each of the listed disabilities.
Included: exact the same disability identified with MACTAR is also included in the questionnaires MAP or HAQ, Partly: the identified disability is partly represented in the MAP or HAQ, and Not: the disability is not at all represented in the MAP or the HAQ.