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Table 1 Overview of outcome measures

From: A retrospective cohort study on European Reference Network for Rare Vascular Diseases 5 outcome measures for Hereditary Haemorrhagic Telangiectasia in Denmark

Outcome measure Target population Cases (N) Target threshold (%) Fulfilment Target threshold achieved
1. Screening for PAVM All HHT-patients 180 ≥ 90 100% (n = 180) Yes
2. Written advice on epistaxis All HHT-patients with epistaxis 151 ≥ 90 66% (n = 99)1
26% (n = 40)2
40% (n = 59)3
No
3. Iron deficiency anaemia assessment All HHT-patients and ≥ 12 years old 167 ≥ 70 80% (n = 133) Yes
4. Written advice on AB All HHT patients, except 9 patients where PAVM was ruled out 171 100 75% (n = 129)1
32% (n = 55)2
43% (n = 74)3
No
5. Written advice about pregnancy All HHT-patients, and female ≥ 15 and ≤ 45 years old 45 100 80% (n = 36)1
24% (n = 11)2
56% (n = 25)3
No
  1. 1Patients received written advice, or the patients were thoroughly informed
  2. 2Patients received written advice
  3. 3Patients were thoroughly informed