Table 5 Use of EQ-5D results during individual patient consultations (with the purpose of screening, monitoring, decision aids and/or shared decision-making)

The Swedish Neuro Registries – Multiple Sclerosis

The registry provides a clinical support tool, that includes EQ-5D and eleven other health measures, to share the results of each patient with clinicians and the patients themselves. The latest reported results from EQ-5D and eleven other health parameters are presented in the so called Function Watch [29]. In this tool, the individual patient’s outcome is compared to those of a reference group from the registry with comparable characteristics regarding sex, age, MS duration and treatment status of the patient. The tool is used by neurologists to assess whether the outcome of a treatment is acceptable, and what problems should be addressed during the individual patient consultations. The registry has also reported that some neurologists use this information together with the patients when discussing the patient’s situation, and in making decisions regarding treatment.

The Swedish Rheumatology Quality Register (SRQ)

The registry provides care givers and patients with a table overview, including EQ-5D results over time. The overview may be used before and during meetings with the patients for discussion and decisions regarding treatments.

The National MMC Follow-Up Program and Quality of Care Registry (MMCUP)

Results from EQ-5D are used in combination with other measures to secure care for the individual patient, and to support the choice of treatment in the follow-up programme, linked to the National MMC Follow-Up Program and Quality of Care Registry (MMCUP).

The National Quality Registry for Child and Adolescent Habilitation (HabQ)

Individual EQ-5D data are used by the health care providers for individual feedback to patients, and for shared decision-making.

The National Quality Registry for Haemophilia

Individual EQ-5D data are used by the treating units for individual feedback to the patients during consultations, and can be used to monitor the individual patient’s treatment.

The Swedish Neuro Registries – Motor Neuron Disease

Individual EQ-5D results are being used in conjunction with data from the Hospital Anxiety and Depression Scale (HADS) to make decisions about treatment with antidepressants for individual patients. If the EQ-5D scores are low but the depression scores are satisfying, EQ-5D reveals the need to identify other reasons for poor HRQoL.

The National Quality Registry for Podiatric Surgery (RiksFot)

Aggregated EQ-5D data are used to show patients facing surgery how a group of patients who have undergone the corresponding surgery experience their symptoms 1 year later.