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| Name | Class |
|---|---|
| Karolinska Institutet | OTHER |
| Linkoeping University | OTHER_GOV |
| Lund University | OTHER |
| Ryhov County Hospital |
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EQ-5D is one of the most commonly employed patient-reported outcome (PRO) measures. It is included in many of the Swedish National Quality Registers (NQRs). EQ-5D health states are usually summarized using 'values' obtained from healthy members of the general public. However an alternative - which remains to be studied in detail - is the potential to use patients' self-reported overall health on the visual analogue scale as a means of capturing experience-based values. The overall aim of this project is to increase knowledge on the potential applicability of EQ VAS as a health state valuation method through assessment of its variability across and within patient groups and compared with that of the general population in Sweden.
Data on nearly 700,000 patients from 12 NQRs covering a variety of diseases/conditions and from the general population will be analysed. Longitudinal studies of PROs among different patient groups will be conducted at baseline/first visit and 1-year follow-up. Descriptive analyses comparing EQ-5D health states and observed self-assessed EQ VAS within and across registers will be performed. Comparisons of the change in health state and observed EQ VAS values over one year will also be made. Regression models will be used to assess whether EQ-5D dimensions predict observed EQ VAS values to investigate patient value sets in each NQR. These will be compared across the patient groups and with the existing Swedish experience-based VAS and time trade-off (TTO) value sets obtained from the general population. This research project will provide information on the variation among different patient groups in terms of self-reported health status through EQ VAS and comparison with the general population. Knowledge on the relative importance of different dimensions of the EQ-5D to different patient groups as well as the general population will be gained in this project. The possibility of getting value sets based on patients' self-reported EQ VAS values and their comparison with value sets from experience-based general population studies will be discussed.
Research questions:
Data: In this project 12 National Quality Registries holding records of PROs, on the EQ-5D instrument, records of approximately 700,000 patients will be included. Clinical data (age, sex, BMI, diagnosis (es) and interventions) and PROs data (EQ-5D-3L and condition-specific) will be retrieved from the registries. Data from cross-sectional population surveys in Sweden will be included for comparison; a total of approximately 45,000 records used in developing the Swedish TTO and VAS value sets.
The quality registries to be part of the study include;
Data analysis: Records of patients in the registries with baseline and follow-up data on PROs will be included for the different analyses to be conducted. The analyses will focus on the three main data components coming from the EQ-5D instrument. Data collected by the EQ-5D descriptive system on the five dimensions; the EQ-VAS score and EQ-5D index resulting from transforming the EQ-5D health profile into a single index using value sets. Hence, analyses looking into how the EQ-5D profile varies within and across patient groups and how it varies over time will form one component of the analyses to be conducted. Similarly, the pattern of EQ-VAS scores across patient groups and follow-ups will be analysed. Similar comparisons of EQ-5D index within and across patient groups, based on current Swedish value sets and patient VAS value sets to be elicited from the dataset, will be performed.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| BOA | Patients with osteoarthritis registered in the Better BOA register | ||
| Swedankle | Patients who underwent ankle replacement, fusion or osteotomies and registered in the Swedish ankle registry | ||
| xBase | Patients with cruciate ligament injuries who received surgical treatment and were registered in the Anterior Cruciate Ligament Register | ||
| SFR | Patients who received treatment in the Swedish Fracture Register | ||
| SHAR | Patients who underwent hip replacement therapy and registered in the Swedish Hip Arthroplasty Register | ||
| SKAR | Patients with knee osteoarthritis and other diagnoses who underwent knee replacement or osteotomies and were registered in the Swedish Knee Arthroplasty Register | ||
| Bipolär | Patients with Bipolar disorder receiving treatment and were registered in the Swedish National Register for Bipolar Disorder |
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| Measure | Description | Time Frame |
|---|---|---|
| Problems reported on the EQ-5D dimensions (EQ-5D-3L and EQ-5D-5L) | These describe the proportions of levels of problems reported in each of the EQ-5D-3L or EQ-5D-5L dimensions (mobility, self-care, usual activities, pain/discomfort, anxiety/depression) | At baseline/ first visit |
| Problems reported on the EQ-5D dimensions (EQ-5D-3L and EQ-5D-5L) | These describe the proportions of levels of problems reported in each of the EQ-5D-3L or EQ-5D-5L dimensions (mobility, self-care, usual activities, pain/discomfort, anxiety/depression) | At 1-year follow-up |
| EQ-VAS value | It describes an overall assessment by respondent of their health, ranging on a scale from 0 (worst imaginable health) to 100 (best imaginable health). | At baseline/ first visit |
| EQ-VAS value | It describes an overall assessment by respondent of their health, ranging on a scale from 0 (worst imaginable health) to 100 (best imaginable health). | At 1-year follow-up |
| EQ-5D index (for EQ-5D-3L and EQ-5D-5L) | An index calculated from the five EQ-5D (3L and 5L) dimensions by attaching specific weights to each severity level in each dimension. | At baseline/ first visit |
| EQ-5D index (for EQ-5D-3L and EQ-5D-5L) | An index calculated from the five EQ-5D (3L and 5L) dimensions by attaching specific weights to each severity level in each dimension. | At 1-year follow-up |
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Inclusion Criteria:
Exclusion Criteria:
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The study population includes patients who received medical, surgical and/or other related treatments and were registered in one of the 12 National Quality Registries (NQRs) in Sweden.
| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Ola Rolfson, MD, PhD | Contact | 0 31-343 0852 | ola.rolfson@vgregion.se |
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| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Registercentrum | Recruiting | Gothenburg | Sweden |
| PubMed Identifier | Type | Citation | Retractions |
|---|---|---|---|
| 34992101 | Derived | Teni FS, Rolfson O, Devlin N, Parkin D, Naucler E, Burstrom K; Swedish Quality Register (SWEQR) Study Group. Longitudinal study of patients' health-related quality of life using EQ-5D-3L in 11 Swedish National Quality Registers. BMJ Open. 2022 Jan 6;12(1):e048176. doi: 10.1136/bmjopen-2020-048176. | |
| 34448726 | Derived |
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| OTHER |
| Göteborg University | OTHER |
| Umeå University | OTHER |
| University of Melbourne | OTHER |
| Office of Health Economics, London | UNKNOWN |
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| Swedevox | Patients with respiratory failure receiving technical respiratory assistance and were registered in the Swedish National Registry for Respiratory Failure |
| PsoReg | Patients receiving systemic treatment for psoriasis and were registered in the Swedish Registry for Systematic Psoriasis Treatment |
| SRQ | Patients with rheumatic disease receiving medical treatment and rehabilitation and were registered in the Swedish Rheumatology Quality Register |
| SwedeHF | Patients who received treatments of different types in the Swedish Heart Failure Registry |
| Swespine | Patients with spinal stenosis, disc hernia and related diagnoses receiving surgical spine treatment and were registered in the Swedish Spine Register |
| Population health survey | Data of members of the general population who answered population surveys using the EQ-5D-3L instrument |
| Teni FS, Rolfson O, Devlin N, Parkin D, Naucler E, Burstrom K; Swedish Quality Register (SWEQR) Study Group. Variations in Patients' Overall Assessment of Their Health Across and Within Disease Groups Using the EQ-5D Questionnaire: Protocol for a Longitudinal Study in the Swedish National Quality Registers. JMIR Res Protoc. 2021 Aug 27;10(8):e27669. doi: 10.2196/27669. |
| ID | Term |
|---|---|
| D006333 | Heart Failure |
| D011565 | Psoriasis |
| D050723 | Fractures, Bone |
| D001714 | Bipolar Disorder |
| D012131 | Respiratory Insufficiency |
| D007718 | Knee Injuries |
| D013122 | Spinal Diseases |
| D012216 | Rheumatic Diseases |
| D010003 | Osteoarthritis |
| ID | Term |
|---|---|
| D006331 | Heart Diseases |
| D002318 | Cardiovascular Diseases |
| D017444 | Skin Diseases, Papulosquamous |
| D012871 | Skin Diseases |
| D017437 | Skin and Connective Tissue Diseases |
| D014947 | Wounds and Injuries |
| D000068105 | Bipolar and Related Disorders |
| D019964 | Mood Disorders |
| D001523 | Mental Disorders |
| D012120 | Respiration Disorders |
| D012140 | Respiratory Tract Diseases |
| D007869 | Leg Injuries |
| D001847 | Bone Diseases |
| D009140 | Musculoskeletal Diseases |
| D003240 | Connective Tissue Diseases |
| D001168 | Arthritis |
| D007592 | Joint Diseases |
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