Epilepsy
Conditions
Brief summary
The aim of this study is to compare quality of care and patient experiences in two outpatients follow-up activities: 1) Standard telePRO (fixed interval telePRO follow-up) and 2) Open Access telePRO (patient-initiated telePRO follow-up)
Detailed description
The traditional system of routine outpatient follow-up of chronic disease in secondary care may involve a waste of resources if patients are well. The use of patient-reported outcomes (PRO) could support more flexible, cost-saving follow-up activities. AmbuFlex is a PRO system used in outpatient follow-up in the Central Denmark Region. PRO questionnaires are sent to patients at fixed intervals. The clinicians use the PRO data to decide whether a patient needs a visit or not (standard telePRO). PRO may make patients become more involved in their own care pathway, which may improve their self-management. Better self-management may also be achieved by letting patients initiate contact. The aim of this study is to obtain data on the effects of patient-initiated follow-up (open access telePRO) on resource utilisation, quality of care, and the patient perspective.
Interventions
OTHEROpen Access telePRO
In open access, contacts to the outpatient clinic are initiated solely by the patient. Contacts may be in the form of a PRO assessment like in standard telePRO, but at a time decided by the patient via the Danish National Health website Sundhed.dk.
OTHERStandard telePRO
Standard care: fixed interval telePRO follow-up. Patients receive a questionnaire with individually pre-specified intervals.
Sponsors
Central Denmark Region
TrygFonden, Denmark
University of Aarhus
Study design
Allocation
RANDOMIZED
Intervention model
PARALLEL
Primary purpose
OTHER
Masking
NONE
Eligibility
Sex/Gender
ALL
Age
15 Years to No maximum
Healthy volunteers
No
Inclusion criteria
* Males and females from Age 15 years * Diagnosis of epilepsy * Referred to standard telePRO by a clinician * Access to internet (web-responders in standard telePRO) * Can speak and understand Danish
Exclusion criteria
* Paper responders * Referred to telePRO proxy questionnaire
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Number of contacts | 18 months | Number of contacts includes all contacts with the outpatient clinic in the study follow-up period |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Well-being wil be assessed by the WHO-5 Well-being Index | 18 months | Well-being will be measured at baseline and after 18 months. |
| Mortality | 18 months | Mortality will be measured after 18 months. |
| Number of seizures | 18 months | Difference number of seizures (start - end) and will be measured at baseline and after 18 months. |
| Side effects | 18 months | Side effects will be measured at baseline and after 18 months. |
| General health will be assessed by items from the SF-36 questionnaire | 18 months | General health will be measured at baseline and after 18 months. |
| Self-efficacy will be assessed by The General Self-Efficacy Scale | 18 months | Self-efficacy will be measured at baseline and after 18 months. |
| Confidence will be assessed by one item from the Danish Cancer Society PREM (Barometer) Questionnaire | 18 months | Confidence will be measured at baseline and after 18 months. |
| Safety will be assessed by one item from the Danish Cancer Society PREM (Barometer) Questionnaire | 18 months | Safety will be measured at baseline and after 18 months. |
| Satisfaction will be assessed by one item from the Danish Cancer Society PREM (Barometer) Questionnaire | 18 months | Satisfaction will be measured at baseline and after 18 months. |
| Health literacy will be assessed by The Health Literacy Questionnaire (sub scale 4, 6, and 9) | 18 months | Health literacy will be measured at baseline and after 18 months. |
Countries
Denmark
Outcome results
None listed