Cultural Adaptation of Patient-Reported Indicator Surveys (PaRIS) Patient and Primary Care Practice Questionnaires to the Slovenian Context.

Introduction: The objective of the study is to describe the adaptation process (with emphasis on cognitive testing) of the Slovenian version of the PaRIS international survey, including two questionnaires to assess patient-reported health outcomes and the experiences of adults living with one or more chronic conditions managed in primary care settings: (1) Patient questionnaire (targets patients aged 45 and older) and (2) Provider questionnaire (targets health care providers working in primary care).

Methods: The translation process of both PaRIS questionnaires followed a team-based double translation and reconciliation approach. Cognitive interviewing with 29 participants was performed.

Psychometric Validation of an Instrument for Measuring Patient Experiences with Outpatient Healthcare.

Aim: Recently, a patient-reported experience measure (PREM) was developed in Slovenia to assess patients' experiences with outpatient specialist healthcare clinics. The aim of this study was to evaluate the psychometric properties (including factor structure, reliability, convergent validity, and response distribution) of the questionnaire.

Methods: The sample consisted of 8,406 adult participants treated in 171 specialist clinics from different medical fields.

Towards a Comprehensive Strategy for the Management of Rare Diseases in Slovenia: Outlining an IT-Enabled Ecosystemic Approach.

Rare diseases (RDs), with distinctive and complex features, pose a serious public health concern and represent a considerable challenge for the Slovenian healthcare system. One of the potential approaches to tackling this problem and treating patients with RDs in a quality and effective manner is to form an RD ecosystem. This represents a functional environment that integrates all stakeholders, procedures, and relationships required for the coordinated and effective treatment of patients.

Charting Early Developmental Trajectory of a Pilot Rare Disease Registry in Slovenia.

Active surveillance of rare diseases enables evidence-informed policymaking, wide-ranging monitoring of rare disease patients, and subsequently assists progressively complex clinical and research needs. This article charts the initial steps for the development of a pilot rare disease registry in Slovenia. The research applies a case study design, while the collection of data was carried out through focus group discussions with 24 eminent experts from the field.

Development of a pilot rare disease registry: a focus group study of initial steps towards the establishment of a rare disease ecosystem in Slovenia.

Background: According to rough estimates, there are approximately 150,000 rare disease patients in Slovenia (out of a total population of 2 million). Despite the absence of accurate epidemiological data on their status, these figures reveal the great importance of this area for the Slovenian healthcare system. Consistent monitoring in the field of rare diseases facilitates evidence-informed healthcare policies, comprehensive observation of rare disease patients, and consequently serves increasingly demanding medical and statistical needs.