Development and adaptation of patient-reported outcome measures for patients who experience itch associated with primary biliary cholangitis

Martin, Mona L.; Stassek, Larissa; Blum, Steven I.; Joshi, Ashish V.; Jones, David

doi:10.1186/s41687-018-0090-1

Journal of Patient-Reported Outcomes

Table 2 Summary of symptom concept code frequency totals by subdomain

From: Development and adaptation of patient-reported outcome measures for patients who experience itch associated with primary biliary cholangitis

PBC Symptom Subdomains and Concepts	Total Language Expressions Within Concept, n (%) N = 642	Transcripts Contributing to Concept Expressions, n (%) N = 20
Itching-related signs and symptoms	293 (46)	20 (100)
Itching	254 (39.6)	20 (100)
Hives	12 (1.9)	3 (15)
Burning	9 (1.4)	3 (15)
Rash	9 (1.4)	3 (15)
Tingling	8 (1.2)	4 (20)
Dry patches	1 (0.2)	1 (5)
Energy-related signs and symptoms	87 (14)	18 (90)
Fatigue	44 (6.9)	17 (85)
Tiredness	16 (2.5)	9 (45)
Low energy	14 (2.2)	6 (30)
Exhaustion	8 (1.2)	7 (35)
Weakness	5 (0.8)	4 (20)
Additional signs and symptoms	86 (13)	19 (95)
Other symptoms^a	20 (3.1)	11 (55)
Dry eyes	13 (2.0)	10 (50)
Gallstones	9 (1.4)	8 (40)
Dry mouth	8 (1.2)	8 (40)
Weak/brittle bones	8 (1.2)	5 (25)
Fat deposits on skin	8 (1.2)	6 (30)
Darkening of skin	8 (1.2)	6 (30)
Hair loss	3 (0.5)	2 (10)
Jaundice	3 (0.5)	2 (10)
Sleep disturbance	3 (0.5)	3 (15)
Swelling	3 (0.5)	3 (15)
Pain and discomfort	77 (12)	19 (95)
Joint pain/aches	23 (3.6)	10 (50)
Discomfort in right side	21 (3.3)	11 (55)
Muscle pain/aches	9 (1.4)	5 (25)
General pain	8 (1.2)	6 (30)
Other pain and discomfort	8 (1.2)	8 (40)
Abdominal pain	4 (0.6)	4 (20)
Bone pain/aches	4 (0.6)	3 (15)
GI signs and symptoms	69 (11)	16 (80)
Diarrhea	17 (2.6)	10 (50)
Nausea	12 (1.9)	7 (35)
Abdominal bloating	11 (1.7)	10 (50)
Other GI symptoms	10 (1.6)	7 (35)
Urgency with bowel movements	7 (1.1)	7 (35)
Greasy diarrhea	6 (0.9)	5 (25)
Indigestion/heartburn	3 (0.5)	3 (15)
Changes in appetite	3 (0.5)	3 (15)
Cognitive signs and symptoms	30 (5)	10 (50)
Difficulty concentrating	11 (1.7)	7 (35)
Difficulty remembering things	9 (1.4)	7 (35)
Other cognitive symptoms	4 (0.6)	2 (10)
Brain fog	3 (0.5)	2 (10)
Confusion	3 (0.5)	2 (10)

GI, gastrointestinal; PBC, primary biliary cholangitis
^aOther symptoms include: bruises easily, cellulitis, changes in taste, chest infections, eye problems, fibromatosis, flushed, fluid in abdomen, heat intolerance, kidney stones, no hair growth, redness, restless legs, shingles, shortness of breath, and sweating

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