Results of a Patient Reported Experience Measure (PREM) to measure the rare disease patients and caregivers experience: A Spanish cross-sectional study
Objective. To measure the experience of the person having a rare disease in order to identify objectives for optimal care in the health care received by these patients. Methods. A cross-sectional study was conducted in Spain involving patients associated with the Spanish Rare Diseases Federation [Federación Española de Enfermedades Raras] (FEDER). A modified version of the PREM IEXPAC [Instrumento para evaluar la Experiencia del Paciente Crónico] instrument was used (IEXPAC-rare-diseases). Scores ranged between 0 (worst experience) and 10 (best experience).
Results. A total of 261 caregivers (in the case of paediatric population) and patients with rare diseases (response rate 54.4%) replied. 232 (88.9%) were adult patients and 29 (11.1%) caregivers of minor patients. Most males, 227 (87%), with an average age of 38 (SD 13.6) years. The mean time since confirmation of diagnosis was 7.8 (SD 8.0) years. The score in this PREM was 3.5 points out to 10 (95%CI 3.2-3.8, SD 2.0). Caregivers of paediatric patients scored higher, except for coordination of social and healthcare services.
Conclusions. There are wide and important areas for improvement in the care of patients with rare diseases. This study involves a first assesment of the experience of patients with rare diseases in Spain.
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Posted 15 Jan, 2021
On 03 Jan, 2021
On 03 Jan, 2021
On 03 Jan, 2021
Received 06 Dec, 2020
On 06 Dec, 2020
On 22 Nov, 2020
Received 30 Apr, 2020
On 15 Apr, 2020
Invitations sent on 07 Jan, 2020
On 29 Dec, 2019
On 28 Dec, 2019
On 28 Dec, 2019
On 28 Dec, 2019
Results of a Patient Reported Experience Measure (PREM) to measure the rare disease patients and caregivers experience: A Spanish cross-sectional study
Posted 15 Jan, 2021
On 03 Jan, 2021
On 03 Jan, 2021
On 03 Jan, 2021
Received 06 Dec, 2020
On 06 Dec, 2020
On 22 Nov, 2020
Received 30 Apr, 2020
On 15 Apr, 2020
Invitations sent on 07 Jan, 2020
On 29 Dec, 2019
On 28 Dec, 2019
On 28 Dec, 2019
On 28 Dec, 2019
Objective. To measure the experience of the person having a rare disease in order to identify objectives for optimal care in the health care received by these patients. Methods. A cross-sectional study was conducted in Spain involving patients associated with the Spanish Rare Diseases Federation [Federación Española de Enfermedades Raras] (FEDER). A modified version of the PREM IEXPAC [Instrumento para evaluar la Experiencia del Paciente Crónico] instrument was used (IEXPAC-rare-diseases). Scores ranged between 0 (worst experience) and 10 (best experience).
Results. A total of 261 caregivers (in the case of paediatric population) and patients with rare diseases (response rate 54.4%) replied. 232 (88.9%) were adult patients and 29 (11.1%) caregivers of minor patients. Most males, 227 (87%), with an average age of 38 (SD 13.6) years. The mean time since confirmation of diagnosis was 7.8 (SD 8.0) years. The score in this PREM was 3.5 points out to 10 (95%CI 3.2-3.8, SD 2.0). Caregivers of paediatric patients scored higher, except for coordination of social and healthcare services.
Conclusions. There are wide and important areas for improvement in the care of patients with rare diseases. This study involves a first assesment of the experience of patients with rare diseases in Spain.