In this section
@article{Mason:2020:qjmed/hcaa327,
author = {Mason, J and Dattani, R and Barwick, T and Wardany, G and Gibbons, N and Morgan, P and Pusey, C and Tam, F and Tomlinson, J},
doi = {qjmed/hcaa327},
journal = {QJM: an international journal of medicine},
title = {An international patient centred study of Retroperitoneal Fibrosis},
url = {http://dx.doi.org/10.1093/qjmed/hcaa327},
volume = {hcaa327},
year = {2020}
}
TY - JOUR
AB - BackgroundThe impact that rare chronic disorders, such as retroperitoneal fibrosis (RPF), can have on the physical and psychological aspects of a patient’s health is poorly understood. Patient-related outcome measures and experiences provide a unique opportunity to understand the impact rare chronic disorders have on a patient’s life as well as allowing healthcare providers to compare and improve performance.AimTo understand the physical and psychosocial impact that RPF has upon peoples’ lives.DesignAn international online questionnaire was therefore created to gain insights into how patients with RPF, a rare fibro-inflammatory condition, viewed their health and experiences.MethodsAn international online questionnaire comprising 62 questions/free text options, was designed in collaboration with two patient advocates and the multi-disciplinary Renal Association Rare Disease Registry (RaDaR) RPF Group the questionnaire was anonymous and freely accessible on a GOOGLE Form online platform for 6 months.ResultsA total of 229 patients from 30 countries across 5 continents responded. Four key issues were identified; (i) pain; (ii) therapy-related side effects; (iii) lack of informed doctors/information about their condition and its management; and (iv) psychological burden. Variations in diagnosis and management are highlighted with 55% undergoing a biopsy to reach a diagnosis of RPF; 75% of patients underwent a further interventional procedure with 60% concurrently treated medically.ConclusionThis study will guide further development of clinical and academic multi-disciplinary activity and shows the importance of trying to understand the impact of rare chronic disorders on the physical and psychological aspects of a patient’s health.
AU - Mason,J
AU - Dattani,R
AU - Barwick,T
AU - Wardany,G
AU - Gibbons,N
AU - Morgan,P
AU - Pusey,C
AU - Tam,F
AU - Tomlinson,J
DO - qjmed/hcaa327
PY - 2020///
SN - 1460-2393
TI - An international patient centred study of Retroperitoneal Fibrosis
T2 - QJM: an international journal of medicine
UR - http://dx.doi.org/10.1093/qjmed/hcaa327
UR - https://academic.oup.com/qjmed/advance-article/doi/10.1093/qjmed/hcaa327/6055561
UR - http://hdl.handle.net/10044/1/86032
VL - hcaa327
ER -
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