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Table 3 Critical evaluation of development of Disease-Specific PROM using COSMIN criteria examined in this review

From: Disease-specific health related quality of life patient reported outcome measures in Genodermatoses: a systematic review and critical evaluation

Condition HR-QoL PROM Study Items CTT / IRT Internal Consistency Reliability Measurement Error Content Validity Structural Validity Hypothesis Testing Cross Cultural Validity Criterion Validity
Congenital Ichthyosis IQOL 13 32 CTT Poor / / Good Poor Good / N/A
FBI 14 25 CTT Fair Fair / Good Good Fair Good N/A
Pachyonychia Congenita IPCRR 15–16 30 CTT / / / Poor / Poor / N/A
PC QOL 17 12 IRT Good Good Good Excellent Good Good / N/A
Darier Disease DD-QOL 18 8 CTT Poor / / Poor Poor / / N/A
Neurofibromatosis Type 2 NFTI-QoL 19 8 CTT Good Poor / Good Good Good / N/A
HHT EQ QOL 20 13 CTT Good Good Good Excellent Good Good / N/A
Psychosocial in HHT 21 71 CTT / / / Poor / / / N/A
Hereditary Angioedema IHAE-QoL 22 11 CTT Good Good Good Good Good Good / N/A
HAE-PRO 23 18   / / / Excellent / / Good N/A
Epidermolysis Bullosa QOLEB 12 17 CTT Good Good Good Excellent Good Good Good N/A
EB-BoD 24 20 CTT Good Good Good Excellent Good Excellent Good N/A
Fabry Disease FSPHPQ 25 40 CTT Good Good Good Excellent Good Good Fair N/A
Basal Cell Nevus Syndrome BCCNS QoL (aBCCdex) 26–27 26 CTT Good Good Good Excellent Good Excellent / N/A
Peutz Jegher Syndrome PJS QoL Questionnaire 28 31 CTT Poor Poor / Fair Good Fair / N/A
  1. Abbreviations: IQOL (Ichthyosis QoL Questionnaire); FBI (Family Burden in Ichthyosis Questionnarie) IPCRR (International Pachynoychia Congenita Research Registry); DD-QOL (Darier Disease QoL Questionnaire); NFTI-QoL (Neurofibromatosis Type 2 Impact on QoL); HHT (Hereditary Haemorrhagic Telangiectasia); EQ-QOL (Epistaxis-specific QoL Questionnaire); IHAE-QoL (Inherited Angioedema QoL Questionnaire); FSPHPQ (Fabry Specific Pediatric Health and Pain Questionnaire) BCCNS (Basal Cell Carcinoma Nevus Syndrome); PJS (Peutz Jegher Syndrome)