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Health‐related quality of life among patients with primary sclerosing cholangitis
Author(s) -
Haapamäki Johanna,
Tenca Andrea,
Sintonen Harri,
BarnerRasmussen Nina,
Färkkilä Martti A.
Publication year - 2015
Publication title -
liver international
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.873
H-Index - 110
eISSN - 1478-3231
pISSN - 1478-3223
DOI - 10.1111/liv.12775
Subject(s) - medicine , primary sclerosing cholangitis , quality of life (healthcare) , depression (economics) , population , gastroenterology , inflammatory bowel disease , distress , disease , clinical psychology , nursing , environmental health , economics , macroeconomics
Background & Aims To assess health‐related quality of life ( HRQ oL) of patients with primary sclerosing cholangitis ( PSC ), and to compare it with that of the general population. Also, to examine changes in HRQ oL in newly diagnosed PSC patients at a follow‐up 1–2 years later, and to compare their HRQ oL with HRQ oL of newly diagnosed inflammatory bowel disease ( IBD ) patients. Furthermore, sources of and need for disease‐related information among PSC patients were surveyed. Methods Primary sclerosing cholangitis patients filled in the survey questionnaire when attending an endoscopic retrograde cholangiography examination. The 15D served as a general HRQ oL instrument. The follow‐up questionnaire was mailed to the newly diagnosed patients 1–2 years later. Results No significant difference was seen in 15D scores between PSC patients and general population, but the dimensions of excretion ( P < 0.001), depression ( P = 0.003), distress ( P = 0.003) and vitality ( P = 0.005) were significantly lower in PSC . Age and symptoms affected HRQ oL but severity of biliary changes did not. Those with newly diagnosed IBD had lower 15D scores than those with PSC . No significant changes were observed in 15D scores of new PSC patients in the follow‐up. Many patients were dissatisfied with information received. Conclusion Newly diagnosed PSC patients have better HRQ oL than do IBD patients, and no significant HRQ oL changes were observed in the mean follow‐up of 1.58 years after PSC diagnosis. ERC findings did not correlate with HRQ oL or symptoms. HRQ oL of PSC patients was mostly comparable with that of general population, but special attention should be paid to patients' psychological well‐being.