The patient experience of Wilson disease: a conceptual model based on qualitative research.

ABSTRACT:

Background

Wilson disease (WD) is a rare disease wherein copper accumulates in tissues, leading to hepatic degeneration, neurological impairments, and psychiatric symptoms. This study aimed to characterize the patient experience of WD and develop a conceptual model containing key symptoms and impacts of the disease.

Results

A targeted literature review was conducted to develop a preliminary conceptual model of WD that was subsequently refined through one-on-one interviews with 3 WD clinicians and finalized following concept elicitation interviews with 11 patients and 1 caregiver. The literature review returned 30 articles, from which 45 concepts (35 signs/symptoms and 10 impacts) were selected for inclusion in the preliminary conceptual model. After interviews with clinician

SUBMITTER: Karantzoulis S 

PROVIDER: S-EPMC8525030 | biostudies-literature | 2021 Oct

REPOSITORIES: biostudies-literature