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Table 2 List of final questionnaire items and source

From: Development of a patient-reported outcome questionnaire for aplastic anemia and paroxysmal nocturnal hemoglobinuria (PRO-AA/PNH)

Questionnaire item Source
Fatiguea, b PRO-CTCAE Symptom Term: Fatigue
Fevera Center specific diagnostic and treatment guidelines based on Petersdorf et al. [34]
Bleedinga, b Modified WHO Bleeding Scale [13]
Dyspneaa, b PRO-CTCAE Symptom Term: Shortness of breath
Paina According to PRO-CTCAE Symptom Term: General pain
Mooda, b According to PRO-CTCAE Symptom Term: Sad; and based on an instrument by Whooley et al. [35]
Concentration/memorya, b Combination of PRO-CTCAE Symptom Term: Concentration and PRO-CTCAE Symptom Term: Memory
Palpitationsa, b PRO-CTCAE Symptom Term: Heart palpitations
Gastro-intestinal problemsb PRO-CTCAE Symptom Terms: Nausea, Vomiting, Heartburn, Gas, Bloating, Constipation and Diarrhea
Open question on other symptom N/A
Items only for AA questionnaire
 Palpitationsa PRO-CTCAE Symptom Term: Heart palpitations
 Tremora According to CTCAE V5.0 Term: Tremor and adopted to PRO-CTCAE style
 Muscle crampsa, b According to CTCAE V5.0 Term: Muscle cramp and adopted to PRO-CTCAE style.
 Paresthesia, numbnessa PRO-CTCAE Symptom Term: Numbness & tingling
 Trouble doing strenuous activitiesb EORTC-QLQ-C30
 Dizzinessb PRO-CTCAE Symptom Term: Dizziness
Items only for PNH questionnaire
 Hemoglobinuriaa, b N/A
 Jaundicea N/A
 Dysphagiaa, b According to CTCAE V5.0 Term: Dysphagia and adopted to the PRO-CTCAE Symptom Term: Difficulty swallowing
 Erectile dysfunctiona PRO-CTCAE Symptom Term: Achieve and maintain erection
 Itchingb PRO-CTCAE Symptom Term: Itching
 Painb According to PRO-CTCAE Symptom Term: General pain
  1. aexperts choice; bpatients choice WHO World Health Organization, PRO-CTCAE patient-reported outcome version of the Common Terminology Criteria for Adverse Events, EORTC-QLQ-C30 European Organization for Research and Treatment of Cancer Quality of Life of Cancer Patients, N/A not applicable