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Table 4 Critical evaluation of Disease-Specific PROMs using “Quality criteria for measurement properties of health status questionnaires”

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 Content Validity Internal Consistency Criterion Validity Construct Validity Reproducibility Responsiveness Floor and Ceiling Effects Interpretability Score
(A-D)
Used in Studies?
Agreement Reliability
Congenital Ichthyosis IQOL 13 + + (α = 0.94) N/A + + 0 0 0 + (MIC = 9) C No
FBI 14 + + (α = 0.89) N/A ? + ? 0 0 + (MIC = 25) B No
Pachyonychia Congenita IPCRR 15,16 0 N/A 0 0 0 0 0 0 D No
PC QOL 17 + + N/A ? ? + 0 ? 0 B No
Darier Disease DD-QOL 18 + 0 N/A ? 0 0 0 0 0 D No
Neurofibromatosis Type 2 NFTI-QoL 19 + + (α = 0.87) N/A + 0 0 0 0 ? B Yes [2]
HHT EQ QOL 20 + + (α = 0.95) N/A ? + ? 0 0 + (MIC = 12) B Yes [1]
Psychosocial in HHT 21 0 N/A 0 0 0 0 0 0 C No
Hereditary Angioedema IHAE-QoL 22 + -(α = 0.63–0.88) N/A ? ? + 0 0 0 C No
HAE-PRO 23 + 0 N/A 0 0 0 0 0 0 D No
Epidermolysis Bullosa QOLEB 12 + + (α = 0.92) N/A + + ? 0 ? + (MIC = 6) B Yes [6]
EB-BoD 24 + + (α = 0.9) N/A + ? + 0 0 0 B No
Fabry Disease FSPHPQ 25 + 0 N/A 0 ? ? 0 0 0 B No
Basal Cell Nevus Syndrome BCCNS QoL (aBCCdex) 26,27 + + (α = 0.86–0.93) N/A + ? + 0 ? C No
Peutz Jegher Syndrome PJS QoL Questionnaire 28 + N/A ? 0 0 0 0 0 C No
  1. Abbreviations: IQOL (Ichthyosis QoL Questionnaire), FBI (Family Burden in Ichthyosis Questionnarie) IPCRR (International Pachyonychia 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)
  2. + = Positive Rating= Indeterminate Rating - = Negative Rating 0 = No Information available MIC = Minimal Important Change, α = Cronbach’s Alpha
  3. (Four degrees of recommendation will be made: A) QoL measurement instrument meets all requirements and is recommended for use; B) QoL measure meets two or more quality items, but performance in all other required quality items is unclear, so that the outcome measure has the potential to be recommended in the future depending on the results of further validation studies; C) QoL measure has low quality in at least one required quality criterion (≥1 rating of “minus”) and therefore is not recommended to be used any more; D) QoL measure has (almost) not been validated. Its performance in all or most relevant quality items is unclear, so that it is not recommended to be used until further validation studies clarify its quality)