They also felt that the disease-specific CLDQ and PedsQL-TM were more relevant than the generic SF12 and EQ-5D.ĬONCLUSIONS: Patients with rare diseases often experience impaired HRQOL. Patients and clinicians suggested that the use of ePROMs may facilitate patient-centred care by promoting patient-clinician communication, highlighting aspects of HRQOL that are important to patients and encouraging patient involvement in their care. RESULTS: Four themes were identified, namely: (i) potential benefits of PROMs in the management of rare diseases (ii) views on selected questionnaires (iii) practical considerations for implementation and (iv) potential facilitators and barriers of implementation. Thematic analysis was conducted to identify the main themes and subthemes. Coding of the transcripts was done using the Nvivo 11 Plus software.
The discussions were audio recorded and transcribed verbatim. 5D) were evaluated by the renal transplant recipients and their doctors. The suitability and acceptability of the Chronic Liver Disease Questionnaire (CLDQ) and the Short Form 12 (SF12) were assessed by patients with PSC and their doctors while the Paediatric quality of life inventory Transplant Module (PedsQL-TM) and the EuroQoL-5 dimensions (EQ. A focus group session was also conducted with 10 clinical staff members (doctors, nurses and other allied health professionals from UHB). METHODS: A total of 15 semi-structured one-to-one interviews were conducted with four patients with primary sclerosing cholangitis (PSC) five renal transplant recipients and six PSC doctors from University Hospitals Birmingham (UHB) NHS Foundation Trust. This study explored the opinions of patients and clinicians on the use of PROMs in the management of patients with rare diseases in routine clinical practice. The use of patient-reported outcome measures (PROMs) may complement clinical assessments by elucidating patients' perspectives on their health status and care priorities. Rare diseases and their clinical management may therefore substantially impact on patients' health-related quality of life (HRQOL). Patient care needs are often complex and challenging to coordinate and deliver effectively. BACKGROUND: Rare diseases may be life-threatening or chronically debilitating conditions.
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