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. 2023 Dec 18;14:1282790. doi: 10.3389/fgene.2023.1282790

TABLE 4.

Results of PRO measures from patients with APBD.

Pain
BPI Average value (n = 3)
Pain severity 5.5 (3.5–7)
Pain interference 6.1 (4.0–8.7)
PI-8a Average value (n = 3) Standard deviation*
T-score 62.7 (55.9–70.7) 1.3
Fatigue
BFI Average value (n = 3)
Current fatigue 6.3
Usual fatigue 6.7
Worst fatigue 8.7
General activity 6.3
Mood 5.7
Walking ability 8.0
Normal work 6.7
Relations with others 4.7
Enjoyment 5.7
Global fatigue score 6.5
FACIT-Fatigue Average value (n = 3) Standard deviation*
T-score 60.0 (55.3–66.5) 1.0
Quality of life
SF-36 Average value (n = 3) Standard deviation*
Physical functioning 23.3 1.7
Role functioning/physical 25.0 0.7
Role functioning/emotional 55.6 0.3
Energy/fatigue 20.0 1.4
Emotional wellbeing 56.0 0.7
Social functioning 25.0 2.1
Pain 40.8 1.2
General health 21.7 1.7
EQ-5D-5L Utility index Standard deviation*
Patient 1 0.5 1.7
Patient 2 0.048 3.9
Patient 3 0.044 3.9

*Represents standard deviations from the population mean value.

Validated PRO measures assessed pain, fatigue, and quality of life in patients 1–3. Pain and its interference with daily life were assessed using Brief Pain Inventory (BPI) and the Patient-Reported Outcomes Measurement Information System (PROMIS) Short Form v1.1—Pain Interference 8a (PI-8a). The most common pain descriptors on BPI were aching, gnawing, exhausting, tiring, penetrating, nagging, and miserable. Fatigue and its impact on quality of life were measured using the Brief Fatigue Inventory (BFI) and the PROMIS Short Form v1.0—Fatigue 13a (FACIT-Fatigue). Quality of life was measured using the EuroQol Research Foundation EQ-5D-5L survey and the RAND 36-Item Health Survey 1.0 (SF-36). Scores reported are averaged, and ranges are provided within parentheses for pain, fatigue, and SF-36.