Patient and clinician opinions of patient reported outcome measures (PROMs) in the management of patients with rare diseases: a qualitative study

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作者：
Olalekan Lee Aiyegbusi
Fatima Isa
Derek Kyte
Tanya Pankhurst
Larissa Kerecuk
James Ferguson
Graham Lipkin
Melanie Calvert
机构：
[1] University of Birmingham,Centre for Patient
[2] University of Birmingham,Reported Outcomes Research, College of Medical and Dental Sciences
[3] University Hospitals Birmingham NHS Foundation Trust and University of Birmingham,Institute of Applied Health Research
[4] NHS England and NHS Improvement,NIHR Birmingham Biomedical Research Centre
[5] Queen Elizabeth Hospital Birmingham,University Hospitals Birmingham NHS Foundation Trust
[6] Birmingham Women’s and Children’s NHS Foundation Trust,undefined
来源：
Health and Quality of Life Outcomes | / 18卷
关键词：
Rare diseases; Rare disorders; Patient involvement; Qualitative study; Health-related quality of life; HRQOL; Primary sclerosing cholangitis; Cholestasis; Patient reported outcome measures; PROMs; ePROMs; Renal transplant; Transitioning;
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