See the published version of this preprint at Orphanet Journal of Rare Diseases.
This is a preprint, a preliminary version of a manuscript that has not completed peer review at a journal. Research Square does not conduct peer review prior to posting preprints. The posting of a preprint on this server should not be interpreted as an endorsement of its validity or suitability for dissemination as established information or for guiding clinical practice.
Learn more about In Review
Research
Mercedes Guilabert Mora
Universidad Miguel Hernandez de Elche
Corresponding Author
ORCiD: https://orcid.org/0000-0002-0706-9911
License:
This work is licensed under a CC BY 4.0 License. Read Full License
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.
Keywords
Rare diseases, Patient Experience, Integrate Care, Quality Assurance, Questionnaire
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CURRENT STATUS: Published
View the published article at Orphanet Journal of Rare Diseases.
Version 2
Posted 15 Jan, 2021
No community comments so far
Editorial decision: Accept
On 18 Jan, 2021
Review #1 received
Received 17 Jan, 2021
Reviewers invited
Invitations sent on 16 Jan, 2021
Reviewer #1 agreed
On 16 Jan, 2021
Editor assigned
On 03 Jan, 2021
Submission checks complete
On 03 Jan, 2021
Editor invited
On 03 Jan, 2021
No comments provided
Review #2 received
Received 06 Dec, 2020
Editorial decision: Major revision
On 06 Dec, 2020
Reviewer #2 agreed
On 22 Nov, 2020
Review #1 received
Received 30 Apr, 2020
Reviewer #1 agreed
On 15 Apr, 2020
Reviewers invited
Invitations sent on 07 Jan, 2020
Editor assigned
On 29 Dec, 2019
First submitted
On 28 Dec, 2019
Submission checks complete
On 28 Dec, 2019
Editor invited
On 28 Dec, 2019
Metrics
Comments: 0
PDF Downloads: ...
HTML Views: ...
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See the published version of this preprint at Orphanet Journal of Rare Diseases.
This is a preprint, a preliminary version of a manuscript that has not completed peer review at a journal. Research Square does not conduct peer review prior to posting preprints. The posting of a preprint on this server should not be interpreted as an endorsement of its validity or suitability for dissemination as established information or for guiding clinical practice.
Learn more about In Review
Research
Mercedes Guilabert Mora
Universidad Miguel Hernandez de Elche
Corresponding Author
ORCiD: https://orcid.org/0000-0002-0706-9911
Badges
Prescreen
This manuscript passed our Prescreen assessment
Complete author information
Appropriate declaration statements
Potential risks to human health
Prescreen
Peer Review Timeline
CURRENT STATUS: Published
View the published article at Orphanet Journal of Rare Diseases.
Version 2
Posted 15 Jan, 2021
No community comments so far
Editorial decision: Accept
On 18 Jan, 2021
Review #1 received
Received 17 Jan, 2021
Reviewers invited
Invitations sent on 16 Jan, 2021
Reviewer #1 agreed
On 16 Jan, 2021
Editor assigned
On 03 Jan, 2021
Submission checks complete
On 03 Jan, 2021
Editor invited
On 03 Jan, 2021
No comments provided
Review #2 received
Received 06 Dec, 2020
Editorial decision: Major revision
On 06 Dec, 2020
Reviewer #2 agreed
On 22 Nov, 2020
Review #1 received
Received 30 Apr, 2020
Reviewer #1 agreed
On 15 Apr, 2020
Reviewers invited
Invitations sent on 07 Jan, 2020
Editor assigned
On 29 Dec, 2019
First submitted
On 28 Dec, 2019
Submission checks complete
On 28 Dec, 2019
Editor invited
On 28 Dec, 2019
Metrics
Comments: 0
PDF Downloads: ...
HTML Views: ...
License:
This work is licensed under a CC BY 4.0 License. Read Full License
View the published article at Orphanet Journal of Rare Diseases.
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.
This is a list of supplementary files associated with this preprint. Click to download.
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