Translation of questionnaire on (health-related) quality of life, self-esteem, disability, and stigma for Rwandan patients with epilepsy and volunteers Not Applicable
Conditions
Interventions
Different samples of study subjects will be recruited during the project.
A) Panel members enrolled in step 1 to 9, participate for the full study and will attend panel meetings and pa
Sponsors
Ghent University Hospital
Eligibility
Sex/Gender
All
Inclusion criteria
Inclusion criteria: A) Patients with epilepsy (N=2) included in panel discussions 1. Definite clinical diagnosis of epilepsy, defined as two epileptic seizures, unprovoked, with a minimum interval of 24 hours 2. Able to read self-administered questionnaires and able to write 3. Bilingual English and Kinyarwanda, preferably trilingual French, English, Kinyarwanda 4. Able to attend/complete computer-assisted personal interviewing 5. Willing to attend video conferencing and CASI 6. = 18y of age 7. Providing signed informed consent B) Healthy volunteers (N=2) included in panel discussions 1. Able to read 2. = 18y of age 3. Willing to attend video conferencing and CASI 4. Provide signed informed consent C) Volunteers (N=30) enrolled for assessment of similarity/comparability of the original version (OV) and Back translation (BT) 1. Fluent in English 2. Able to attend/complete CASI 3. = 18y of age 4. Providing signed informed consent D) Patients (N=5) for testing of prefinal version 1. Definite clinical diagnosis of epilepsy, defined as two epileptic seizures, unprovoked, with a minimum interval of 24 hours 2. Able to understand and respond to the questionnaire 3. = 18y of age 4. Provide signed informed consent E) Healthy Volunteers (N=5) for testing of prefinal version 1. Able to understand and respond to the questionnaire 2. = 18y of age 3. Provide signed informed consent F) Healthcare Professional (N=5) for testing of prefinal version 1. = 18y of age 2. Board-certified healthcare professional in Rwanda 3. Fluent in Kinyarwanda 4. Provide signed informed consent
Exclusion criteria
Exclusion criteria: A) PwE (N=2) included in panel discussions 1. Presence of cognitive deficit hampering interview, comprehension of questions 2. Presence of neurological deficit that hinders answering of questions, reading, or understanding 3. Presence of hallucinations, psychosis B) HVs (N=2) included in panel discussions 1. Presence of any medical condition unless treatment provides total symptom control for at least 6 months or unless judged healthy by the enrolling investigator 2. Presence of cognitive deficit, possibly hampering participation or reading, understanding or answering of questions, 3. Presence of hallucinations, psychosis C) volunteers (N=30) enrolled for assessment of similarity/comparability of the original version (OV) and Back translation (BT) 1. Presence of physical condition hampering reading, understanding or answering 2. Presence of hallucinations, psychosis D) Patients (N=5) for testing of prefinal version 1. Presence of cognitive deficit hampering interview, comprehension of questions 2. Presence of neurological deficit that hinders answering of questions, reading or understanding 3. Presence of hallucinations, psychosis E) Healthy Volunteers (N=5) for testing of prefinal version 1. Presence of any medical condition unless treatment provides total symptom control for at least 6 months or unless judged healthy by the enrolling investigator 2. Presence of cognitive deficit, possibly hampering participation or reading, understanding or answering of questions, 3. Presence of hallucinations, psychosis F) Healthcare Profession (N=5) for testing of prefinal version 1. Presence of any medical condition unless treatment provides total symptom control for at least 6 months or unless judged healthy by the enrolling investigator 2. Presence of cognitive deficit, possibly hampering participation or reading, understanding or answering of questions
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| Content Validity is measured using the item content validity index (I-CVI), Scale-CVI, proportional index and unanimity agreement score, at a single time point (step 3) | — |
Secondary
| Measure | Time frame |
|---|---|
| 1. Comparability and similarity is measured once in step 6 using a 7-point Likert scale, ranging from 'extremely comparable' to 'not at all comparable' and 'extremely similar to 'not at all similar' 2. User preference for healthcare professionals is measured once in step 8 using a 4-point Likert scale in a non validated, study-specific user preference questionnaire 3. Patient and volunteer testing assesses difficulty, emotional barriers, and understanding of all items for all questionnaires using a 4-item Likert scale completed by the interviewer and using the yes/no items completed by the interviewer from his/her observation at the end of the study | — |
Countries
Rwanda
Outcome results
None listed