THE RESOURCE UTILISATION IN DEMENTIA (RUD) QUESTIONNAIRE Case Report Form

Transcription

1 THE RESOURCE UTILISATION IN DEMENTIA (RUD) QUESTIONNAIRE Case Report Form Revised as RUD 3.2 Source: Wimo A, Wetterholm AL, Mastey V, Winblad B. Evaluation of the resource utilization and caregiver time in Anti-dementia drug trials - a quantitative battery. in: Wimo A, Karlsson G, Jönsson B, Winblad B (eds). The Health Economics of dementia, Wiley s, London, UK.

2 THE RESOURCE UTILISATION IN DEMENTIA (RUD) QUESTIONNAIRE BASELINE QUESTIONNAIRE A1. CAREGIVER A1.1 Description of Primary Caregiver 1 (included in RUD Lite) Age years 2. (included in RUD Lite) Sex: 1. Male 2. Female 3. (included in RUD Lite) Relationship to patient: 1. Spouse 2. Sibling 3. Child 4. Friend 5. (Staff not allowed) 4. (included in RUD Lite) Number of children currently living with you: child(ren) 5. (included in RUD Lite) Do you live with the patient? 1. Yes 2. No 6. (included in RUD Lite) How many other caregivers are involved in the care? or more 7. (included in RUD Lite) Among all caregivers what is your level of contribution? % % % % % RUD 3.2 US/English 2

3 A1.2 Caregiver Time 1. (included in RUD Lite) On a typical care day during the last 30, how much time per day and night did you spend asleep? hours and minutes per day and night 2a). (included in RUD Lite) On a typical care day during the last 30, how much time per day did you spend assisting the patient with tasks such as toilet visits, eating, dressing, grooming, walking and bathing? hours and minutes per day 2b). (included in RUD Lite) During the last 30, how many did you spend providing these services to the patient? 3a). (included in RUD Lite) On a typical care day during the last 30, how much time per day did you spend assisting the patient with tasks such as shopping, food preparation, housekeeping, laundry, transportation, taking medication and managing financial matters? hours and minutes per day 3b). (included in RUD Lite) During the last 30, how many did you spend providing these services to the patient? 4a). (included in RUD Lite) On a typical care day during the last 30, how much time per day did you spend supervising the patient (i.e. preventing dangerous events)? hours and minutes per day 4b). (included in RUD Lite) During the last 30, how many did you spend providing these services to the patient? RUD 3.2 US/English 3

4 A1.3 Caregiver Work Status 1. (included in RUD Lite) Do you currently work for pay? 1. Yes If yes, answer questions 3 to 5 2. No If no, answer question 2 only 2. Why did you stop/reduce working? 1. Never worked 2. Reached retirement age 3. Early retirement (not disease-related) 4. Laid off 5. Own health problems 6. To care for patient How many hours do you work in total for pay per week? Hours per week 4. Of this number of hours, how many hours per week are you paid to care for the patient? Hours per week 5. During the last 30, by how many hours have you cut down on the number of hours that you usually work each week because of your caregiver responsibilities? Hours per week 6. (included in RUD Lite) During the last 30, please specify the number of times that your caregiver responsibilities affected your work in the following ways. A. Missed a whole day of work B. Missed part of a day of work RUD 3.2 US/English 4

5 A1.4 Caregiver Health Care Resource Utilisation 1. During the last 30, how many times were you admitted to a hospital (for more than 24 hours)? 2. If you were admitted to a hospital during the last 30, please specify the total number of nights spent in each type of ward. Ward Number of nights during the last 30 Geriatric Psychiatric Internal medicine Surgery Neurology General ward (please specify) 3. During the last 30, how many times did you receive care in a hospital emergency room (for less than 24 hours)? RUD 3.2 US/English 5

6 4. During the last 30, consider how many times you visited a doctor, physiotherapist, psychologist or other health care professional. Please specify the number of visits for each type of care received. I did not visit any of these health care professionals during the last 30 Type of care Number of visits during last 30 General practitioner Geriatrician Neurologist Psychiatrist Physiotherapist Occupational therapist Social worker Psychologist (e.g. specialist; please specify) 5. Please specify what medications you are currently taking (prescription or over-the-counter). I am not taking any medications currently Name of medication Strength (mg) Number of times per day Number of taken in the last 30 RUD 3.2 US/English 6

7 A2. PATIENT A2.1 Patient Living Accommodation 1. (included in RUD Lite) Please specify the patient s current living accommodation. 1. Own home (owner occupied or rented) 2. Intermediate forms of accommodation (not dementia-specific) 3. Dementia-specific residential accommodation 4. Long-term institutional care* 5. *If nursing home accommodation is permitted at baseline, otherwise this alternative should be deleted 2. (included in RUD Lite) Who does the patient live with? 1. Alone 2. Spouse 3. Sibling 4. Child Not applicable 3. (included in RUD Lite) During the last 30, if the patient temporarily changed living accommodations (i.e. moved to a new location for more than 24 hours and then back to the original location), please specify the number of nights spent in this temporary living accommodation. Number of nights 1. Own home (owner occupied or rented) 2. Intermediate forms of accommodation (not dementia-specific) 3. Dementia-specific residential accommodation 4. Long-term institutional care 5. RUD 3.2 US/English 7

8 A2.2 Patient Health Care Resource Utilisation 1. (included in RUD Lite) During the last 30, how many times was the patient admitted to a hospital (for more than 24 hours)? 2. (included in RUD Lite) If the patient was admitted to a hospital during the last 30, please specify the total number of nights spent in each type of ward. Ward Number of nights during the last 30 Geriatric Psychiatric Internal medicine Surgery Neurology General ward (please specify) 3. (included in RUD Lite) During the last 30, how many times did the patient receive care in a hospital emergency room (for less than 24 hours)? RUD 3.2 US/English 8

9 4. (included in RUD Lite) During the last 30, consider how many times the patient visited a doctor, physiotherapist, psychologist or other health care professional. Please specify the number of visits for each type of care received. The patient did not visit any of these health care professionals during the last 30 Type of care Number of visits during last 30 General practitioner Geriatrician Neurologist Psychiatrist Physiotherapist Occupational therapist Social worker Psychologist (e.g. specialist; please specify) 5. (included in RUD Lite) For each service listed below, please specify the number of times the service was received during the last 30 and the average number of hours per visit. The patient did not receive any of these services during the last 30 District nurse Service Home help/healthcare assistant Meals on Wheels Day care Transportation (care related) (e.g. please specify) Number of visits during last 30 Number of hours per visit N/A N/A RUD 3.2 US/English 9

10 THE RESOURCE UTILISATION IN DEMENTIA (RUD) QUESTIONNAIRE FOLLOW-UP QUESTIONNAIRES B1. CAREGIVER B1.1 Description of Primary Caregiver 1 (included in RUD Lite) Age years 2. (included in RUD Lite) Sex: 1. Male 2. Female 3. (included in RUD Lite) Relationship to patient: 1. Spouse 2. Sibling 3. Child 4. Friend 5. (Staff not allowed) 4. (included in RUD Lite) Number of children currently living with you: child(ren) 5. (included in RUD Lite) Do you live with the patient? 1. Yes 2. No 6. (included in RUD Lite) How many other caregivers are involved in the care? or more 7. (included in RUD Lite) Among all caregivers what is your level of contribution? % % % % % RUD 3.2 US/English 10

11 B1.2 Caregiver Time 1. (included in RUD Lite) On a typical care day during the last 30, how much time per day and night did you spend asleep? hours and minutes per day and night 2a). (included in RUD Lite) On a typical care day during the last 30, how much time per day did you spend assisting the patient with tasks such as toilet visits, eating, dressing, grooming, walking and bathing? hours and minutes per day 2b). (included in RUD Lite) During the last 30, how many did you spend providing these services to the patient? 3a). (included in RUD Lite) On a typical care day during the last 30, how much time per day did you spend assisting the patient with tasks such as shopping, food preparation, housekeeping, laundry, transportation, taking medication and managing financial matters? hours and minutes per day 3b). (included in RUD Lite) During the last 30, how many did you spend providing these services to the patient? 4a). (included in RUD Lite) On a typical care day during the last 30, how much time per day did you spend supervising the patient (i.e. preventing dangerous events)? hours and minutes per day 4b). (included in RUD Lite) During the last 30, how many did you spend providing these services to the patient? RUD 3.2 US/English 11

12 B1.3 Caregiver Work Status 1. (included in RUD Lite) Since the last visit, have you been working for pay (for part or all of the period)? 1. Yes If yes, answer question 2 2. No If no, go to section B Since the last visit, have you stopped working completely? 1. Yes If yes, answer question 8 only 2. No If no, go to question 3 3. Since the last visit, have you changed your job or working situation? 1. Yes If yes, answer questions 4 to 8 2. No If no, answer question 7 4. How many hours do you work in total for pay per week? Hours per week 5. Of this number of hours, how many hours per week are you paid to care for the patient? Hours per week 6. During the last 30, by how many hours have you cut down on the number of hours that you usually work each week because of your caregiver responsibilities? Hours per week 7. (included in RUD Lite) During the last 30, please specify the number of times that your caregiver responsibilities affected your work in the following ways. A. Missed a whole day of work B. Missed part of a day of work 8. Why did you stop/reduce working? 1. Reached retirement age 2. Early retirement (not disease-related) 3. Laid off 4. Own health problems 5. To care for the patient Not applicable RUD 3.2 US/English 12

13 B1.4 Caregiver Health Care Resource Utilisation 1. Since the last visit, how many times were you admitted to a hospital (for more than 24 hours)? 2. If you were admitted to a hospital since the last visit, please specify the total number of nights spent in each type of ward. Ward Number of nights since the last visit Geriatric Psychiatric Internal medicine Surgery Neurology General ward (please specify) 3. Since the last visit, how many times did you receive care in a hospital emergency room (for less than 24 hours)? RUD 3.2 US/English 13

14 4. Since the last visit, consider how many times you visited a doctor, physiotherapist, psychologist or other health care professional. Please specify the number of visits for each type of care received. I did not visit any of these health care professionals since the last visit Type of care Number of visits since the last visit General practitioner Geriatrician Neurologist Psychiatrist Physiotherapist Occupational therapist Social worker Psychologist (e.g. specialist; please specify) 5. Please specify what medications you are currently taking (prescription or over-the-counter). I am not taking any medications currently Name of medication Strength (mg) Number of times per day Number of taken since the last visit RUD 3.2 US/English 14

15 B2.1 Patient Living Accommodation 1. (included in RUD Lite) Since the last visit, has the patient permanently changed his/her living accommodation (i.e. moved to another location and is currently living in this new location)? 1. Yes If yes, answer questions 2 to 4 2. No If no, answer question 5 2. (included in RUD Lite) Please specify the patient s current living accommodation. 1. Own home 2. Intermediate forms of accommodation (not dementia-specific) 3. Dementia-specific residential accommodation 4. Long-term institutional care (included in RUD Lite) Please specify the date on which the change occurred. / / dd/mm/yy 4. Please specify the principal reason for this change in living accommodation. 1. Worsening of patient s cognitive function 2. Worsening of patient s ability to perform daily tasks (e.g. feeding, dressing, housekeeping, etc.) 3. Increase in patient s behavioural problems 4. Poor health of caregiver 5. Improvement in patient s cognitive function 6. Improvement in patient s ability to perform daily tasks (e.g. feeding, dressing, housekeeping, etc.) 7. Improvement in patient s behaviour 8. Improved health of caregiver (included in RUD Lite) Since the last visit, if the patient temporarily changed living accommodation (i.e. moved to a new location for more than 24 hours and then back to the original location), please specify the number of nights spent in this temporary living accommodation. Number of nights 1. Own home (owner occupied or rented) 2. Intermediate forms of accommodation (not dementia-specific) 3. Dementia-specific residential accommodation 4. Long-term institutional care 5. RUD 3.2 US/English 15

16 B2.2 Patient Health Care Resource Utilisation 1. (included in RUD Lite) Since the last visit, how many times was the patient admitted to a hospital (for more than 24 hours)? 2. (included in RUD Lite) If the patient was admitted to a hospital since the last visit, please specify the total number of nights spent in each type of ward. Ward Number of nights since the last visit Geriatric Psychiatric Internal medicine Surgery Neurology General ward (please specify) 3. (included in RUD Lite) Since the last visit, how many times did the patient receive care in a hospital emergency room (for less than 24 hours)? RUD 3.2 US/English 16

17 4. (included in RUD Lite) Since the last visit, consider how many times the patient visited a doctor, physiotherapist, psychologist or other health care professional. Please specify the number of visits for each type of care received. The patient did not visit any of these health care professionals since the last visit Type of care Number of visits since the last visit General practitioner Geriatrician Neurologist Psychiatrist Physiotherapist Occupational therapist Social worker Psychologist (e.g. specialist; please specify) 5. (included in RUD Lite) For each service listed below, please specify the number of times the service was received since the last visit and the average number of hours per visit. The patient did not receive any of these services since the last visit District nurse Service Home help/healthcare assistant Meals on Wheels Day care Transportation (care related) (e.g. please specify) Number of visits since the last visit Number of hours per visit N/A N/A RUD 3.2 US/English 17