ID

41900

Descrição

The Older Persons and Informal Caregivers Survey Minimum DataSet (TOPICS-MDS) is a public data repository which contains information on the physical and mental health and wellbeing of older persons and informal caregivers across the Netherlands. The database was developed in part to ensure uniform collection of outcomes measures, thus promoting comparability between studies. To date, 53 different research projects have contributed data to this initiative, resulting in a pooled dataset >44,000 older persons and >9,000 informal caregivers. Early 2021, the database will be updated with new data, specifically from older persons with dementia and their informal caregivers. More information can be found at https://topics-mds.eu This form contains the English and Dutch version of TOPICS-MDS 2017 questionnaire for the caregiver for the Baseline and Follow-up measurement. English Instructions for the participant (Dutch version below): Your experiences are valuable. You are caring for your partner, a family member, a friend or a loved one. This list contains questions about what this care means for you as a caregiver. Your answers will be used in research aimed at improving elderly care and informal care. The more information there is about these types of care, the more they can be taken into consideration. For example, when changing the facilities, regulations or legislation for care and wellbeing. Therefore, your experiences are also valuable for other caregivers. Instructions for filling in this questionnaire: Completing this questionnaire will take approximately twenty minutes. If you read ‘your loved one’, then the question refers to the person for whom you are a caregiver. Read each question through completely before answering. Some questions may appear to be ‘repeated’, but please answer all questions. They are intended to view your situation again from a different angle. When you are done, please check that you have not forgotten any questions Nederlandse aanwijzingen: U zorgt voor uw partner, een familielid, een vriend of andere naaste. In deze lijst staan vragen over wat die zorg betekent voor u als mantelzorger. Uw antwoorden worden gebruikt in onderzoek gericht op verbeteringen in de ouderen zorg en mantelzorg. Want hoe meer er bekend is over deze vormen van zorg, hoe beter er rekening mee gehouden kan worden. Bijvoorbeeld bij het veranderen van voorzieningen, regelingen of wetten voor zorgen wel zijn. Uw ervaringen zijn dus waardevol, ook voor andere mantelzorgers. Aanwijzingen bij deze vragenlijst: Het invullen van de vragenlijst kost u ongeveer twintig minuten. Als u leest ‘uw naaste’, dan gaat de vraag over de persoon voor wie u mantelzorger bent. Lees elke vraag eerst helemaal door voordat u een antwoord geeft. Sommige vragen lijken ‘dubbel’, maar we verzoeken u ze toch in te vullen. Ze zijn bedoeld om uw situatie nog eens van een andere kant te bekijken. Bent u klaar? Kijk dan of u geen vragen vergeten bent.

Link

https://topics-mds.eu

Palavras-chave

Versões (5)
  1. 30/05/2020 30/05/2020 -
  2. 19/11/2020 19/11/2020 -
  3. 30/01/2021 30/01/2021 -
  4. 11/02/2021 11/02/2021 - Sarah Riepenhausen
  5. 11/02/2021 11/02/2021 - Sarah Riepenhausen
Titular dos direitos

Radboud University Medical Center, Department of Geriatric Medicine

Transferido a

11 de fevereiro de 2021

DOI

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Licença

Creative Commons BY-NC 4.0
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TOPICS-MDS

Inglês Holandês

TOPICS-MDS Caregiver - Baseline and Follow-up (Mantelzorger, baseline en vervolgmeting)

1 Formulários  
Date of birth, gender and postal code
Descrição

Date of birth, gender and postal code

Alias
UMLS CUI-1
C1320722
UMLS CUI-2
C0085537
Date of filling in the questionnaire
Descrição

Assessment date

Tipo de dados

date

Alias
UMLS CUI [1]
C2985720
Date of birth
Descrição

Date of birth of caregiver

Tipo de dados

date

Alias
UMLS CUI [1,1]
C2348576
UMLS CUI [1,2]
C0085537
Gender
Descrição

Gender

Tipo de dados

text

Alias
UMLS CUI [1,1]
C0079399
UMLS CUI [1,2]
C0085537
Postal code (four numbers)
Descrição

Postal code

Tipo de dados

integer

Alias
UMLS CUI [1,1]
C1514254
UMLS CUI [1,2]
C0085537
Date of birth, gender and postal code of your loved one
Descrição

Date of birth, gender and postal code of your loved one

Alias
UMLS CUI-1
C1320722
UMLS CUI-2
C0017313
UMLS CUI-3
C1551356
Date of birth of your loved one
Descrição

Date of birth care receiver

Tipo de dados

date

Alias
UMLS CUI [1,1]
C0421451
UMLS CUI [1,2]
C0017313
UMLS CUI [1,3]
C1551356
Gender of your loved one
Descrição

Gender of care receiver

Tipo de dados

text

Alias
UMLS CUI [1,1]
C0079399
UMLS CUI [1,2]
C0017313
UMLS CUI [1,3]
C1551356
Postal code of your loved one
Descrição

Four numbers

Tipo de dados

integer

Alias
UMLS CUI [1,1]
C1514254
UMLS CUI [1,2]
C0017313
UMLS CUI [1,3]
C1551356
Relation to your loved one
Descrição

Relation to your loved one

Alias
UMLS CUI-1
C0439849
UMLS CUI-2
C0017313
UMLS CUI-3
C1551356
What is your relationship with your loved one?
Descrição

Relationship to care receiver

Tipo de dados

text

Alias
UMLS CUI [1,1]
C0439849
UMLS CUI [1,2]
C0085537
UMLS CUI [1,3]
C0017313
UMLS CUI [1,4]
C1551356
If other, please specify
Descrição

Specification of relationship

Tipo de dados

text

Alias
UMLS CUI [1,1]
C2348235
UMLS CUI [1,2]
C0439849
UMLS CUI [1,3]
C0085537
UMLS CUI [1,4]
C0017313
UMLS CUI [1,5]
C1551356
Do you live with your loved one?
Descrição

Living situation with care receiver

Tipo de dados

integer

Alias
UMLS CUI [1,1]
C0682072
UMLS CUI [1,2]
C0017313
UMLS CUI [1,3]
C1551356
Your health
Descrição

Your health

Alias
UMLS CUI-1
C0018759
UMLS CUI-2
C0085537
The following questions are about your health. Please tick the answer that best fits your situation. In general would you say your health is
Descrição

Health status

Tipo de dados

text

Alias
UMLS CUI [1,1]
C0424575
UMLS CUI [1,2]
C0449438
Compared to one year ago, how would you rate your health in general now?
Descrição

Health comparison to past year

Tipo de dados

text

Alias
UMLS CUI [1,1]
C1707455
UMLS CUI [1,2]
C0018759
UMLS CUI [1,3]
C3898100
Time spent caring for your loved one
Descrição

Time spent caring for your loved one

Alias
UMLS CUI-1
C0040223
UMLS CUI-2
C0680968
UMLS CUI-3
C1947933
The following questions are about the amount of time that you spend caring for your loved one. You will be asked to write down whether you have given your loved one assistance for various activities of daily life. With ‘assistance’, we mean that you have supported your loved one in the task or have taken over the task entirely. Please fill in as accurately as possible the amount of time that you spend on all activities. For some caregivers it feels like they spend the whole day caring for their loved one. For example, because the care is very hard work. Even so, try to indicate as precisely as possible how much time you really spend caring for your loved one. There are questions further on in this questionnaire about how hard the care feels to you. Complete the questions based on how the previous week has been. Choose another week if your time expenditure in the previous week has been very different to the average week, for example due to illness or vacation. In the past week, have you had to help your loved one with household tasks such as preparing food and drinks, cleaning the house, washing, ironing and sewing clothing, shopping for groceries or odd jobs in the house or the garden due to his/her health problems?
Descrição

Assisted in preparing food/drinks, cleaning the house, washing, ironing, sewing clothing, shopping for groceries, odd jobs in the house or garden

Tipo de dados

integer

Alias
UMLS CUI [1,1]
C1269765
UMLS CUI [1,2]
C1521827
UMLS CUI [1,3]
C0524819
UMLS CUI [1,4]
C2987125
UMLS CUI [2,1]
C1269765
UMLS CUI [2,2]
C1947930
UMLS CUI [2,3]
C2987125
UMLS CUI [3,1]
C1269765
UMLS CUI [3,2]
C0441648
UMLS CUI [3,3]
C2987125
UMLS CUI [4,1]
C1269765
UMLS CUI [4,2]
C2713000
UMLS CUI [4,3]
C2987125
UMLS CUI [5,1]
C1269765
UMLS CUI [5,2]
C2977585
UMLS CUI [5,3]
C2987125
UMLS CUI [6,1]
C1269765
UMLS CUI [6,2]
C0150768
UMLS CUI [6,3]
C2987125
UMLS CUI [7,1]
C1269765
UMLS CUI [7,2]
C0521114
UMLS CUI [7,3]
C0043227
UMLS CUI [7,4]
C3843862
UMLS CUI [7,5]
C2987125
UMLS CUI [8,1]
C1269765
UMLS CUI [8,2]
C0521114
UMLS CUI [8,3]
C0868963
UMLS CUI [8,4]
C2987125
If yes, how many hours have you had to help your loved one with household tasks?
Descrição

Hours/week of assistance in household activities

Tipo de dados

integer

Unidades de medida
  • hours in the past week
Alias
UMLS CUI [1,1]
C0001288
UMLS CUI [1,2]
C1269765
UMLS CUI [1,3]
C2987125
UMLS CUI [1,4]
C0556976
hours in the past week
In the past week, have you had to help your loved one with personal care (dressing and undressing, washing, combing, shaving), going to the toilet, moving around the house, eating, drinking or administering medication due to his/her health problems?
Descrição

Assisted with personal care, going to the toilet, moving around the house, eating, drinking or administering medication

Tipo de dados

integer

Alias
UMLS CUI [1,1]
C0476651
UMLS CUI [1,2]
C2987125
UMLS CUI [2,1]
C0686904
UMLS CUI [2,2]
C1822189
UMLS CUI [2,3]
C2987125
UMLS CUI [3,1]
C1269765
UMLS CUI [3,2]
C2371429
UMLS CUI [3,3]
C2987125
UMLS CUI [4,1]
C1279813
UMLS CUI [4,2]
C2987125
UMLS CUI [5,1]
C3469597
UMLS CUI [5,2]
C3828841
UMLS CUI [5,3]
C2987125
If yes, how many hours have you had to help your loved one with personal care ?
Descrição

Hours/week of assistance in personal care

Tipo de dados

integer

Unidades de medida
  • hours in the past week
Alias
UMLS CUI [1,1]
C0476651
UMLS CUI [1,2]
C2987125
UMLS CUI [1,3]
C0556976
hours in the past week
In the past week, have you had to help your loved one with moving around outside the house, going on outings and visiting family or friends, contacts with healthcare (accompanying him/her for example to the general practitioner, the hospital, therapy), arranging assistance, devices and/or home modifications and organising financial and administrative matters due to his/her health problems?
Descrição

Assisting in moving around outside the house, going on outings and visiting family or friends, contacts with healthcare, arranging assistance, devices/home modifications and organising financial and administrative matters

Tipo de dados

integer

Alias
UMLS CUI [1,1]
C1269765
UMLS CUI [1,2]
C2371431
UMLS CUI [1,3]
C2987125
UMLS CUI [2,1]
C1269765
UMLS CUI [2,2]
C3842924
UMLS CUI [2,3]
C1269765
UMLS CUI [2,4]
C2987125
UMLS CUI [3,1]
C1269765
UMLS CUI [3,2]
C0332158
UMLS CUI [3,3]
C0086388
UMLS CUI [3,4]
C2987125
UMLS CUI [4,1]
C1269765
UMLS CUI [4,2]
C0420305
UMLS CUI [4,3]
C2987125
UMLS CUI [5,1]
C1269765
UMLS CUI [5,2]
C0025080
UMLS CUI [5,3]
C2987125
UMLS CUI [6,1]
C1269765
UMLS CUI [6,2]
C0850398
UMLS CUI [6,3]
C2987125
UMLS CUI [7,1]
C1269765
UMLS CUI [7,2]
C0016114
UMLS CUI [7,3]
C2987125
UMLS CUI [8,1]
C1269765
UMLS CUI [8,2]
C1292785
UMLS CUI [8,3]
C2987125
UMLS CUI [9,1]
C1300196
UMLS CUI [9,2]
C1822167
UMLS CUI [9,3]
C2987125
If yes, how many hours have you had to help your loved one with moving around outside the house, going on outings and visiting family or friends, contacts with healthcare (accompanying him/her for example to the general practitioner, the hospital, therapy), arranging assistance, devices and/or home modifications and organising financial and administrative matters due to his/her health problems?
Descrição

Hours/week of assistance in moving around outside the house, going on outings and visiting family or friends, contacts with healthcare, arranging assistance, devices and/or home modifications and organising financial and administrative matters

Tipo de dados

integer

Unidades de medida
  • hours in the past week
Alias
UMLS CUI [1,1]
C1269765
UMLS CUI [1,2]
C2987125
UMLS CUI [1,3]
C0556976
hours in the past week
Does your loved one receive help from other caregivers or volunteers besides you?
Descrição

Other support than the caregiver

Tipo de dados

integer

Alias
UMLS CUI [1,1]
C0205394
UMLS CUI [1,2]
C1521721
UMLS CUI [2,1]
C0205394
UMLS CUI [2,2]
C2367294
If yes, how many hours per week did your loved one receive help from other caregivers or volunteers besides you?
Descrição

Other support than the caregiver

Tipo de dados

integer

Unidades de medida
  • hours per week
Alias
UMLS CUI [1,1]
C0085537
UMLS CUI [1,2]
C0205394
UMLS CUI [1,3]
C1521721
UMLS CUI [1,4]
C2584953
UMLS CUI [2,1]
C0085537
UMLS CUI [2,2]
C0205394
UMLS CUI [2,3]
C2367294
UMLS CUI [2,4]
C2584953
hours per week
How difficult is the care for you
Descrição

How difficult is the care for you

Alias
UMLS CUI-1
C1299586
UMLS CUI-2
C1171174
Indicate on a scale from 0 to 10 how hard you are finding it to care for your loved one. The closer to ‘0’, the less hard you find the care. The closer to ‘10’, the harder you find the care. Ticking 0 means "not difficult at all", whereas a 10 stands for "far too difficult".
Descrição

How difficult is the care for you

Tipo de dados

float

Alias
UMLS CUI [1,1]
C1299586
UMLS CUI [1,2]
C1171174
The following questions are about your situation as a caregiver. I gain ... (of) satisfaction from performing my care tasks.
Descrição

Satisfied by performing care tasks

Tipo de dados

integer

Alias
UMLS CUI [1,1]
C0242428
UMLS CUI [1,2]
C0597198
UMLS CUI [1,3]
C1947933
I have ... (of) problems with my loved one (for example, he/she is demanding, we have communication problems, he/she has started behaving differently).
Descrição

Having problems with the loved one

Tipo de dados

integer

Alias
UMLS CUI [1,1]
C0425168
UMLS CUI [1,2]
C0085537
UMLS CUI [1,3]
C0017313
UMLS CUI [1,4]
C1551356
I have ... (of) problems with my own mental health (for example stress, anxiety, despondency, concern about the future).
Descrição

Having problems with own mental health

Tipo de dados

integer

Alias
UMLS CUI [1]
C1446377
I have ... (of) problems with my own physical health (for example being sick more often, fatigue, physical overexertion).
Descrição

Having problems with own physical health

Tipo de dados

integer

Alias
UMLS CUI [1,1]
C0033213
UMLS CUI [1,2]
C0517226
I have ... (of) problems combining my daily activities (for example work, household, education, family and free time) with my care tasks.
Descrição

Difficulty to combine daily activities with care tasks

Tipo de dados

integer

Alias
UMLS CUI [1,1]
C0740765
UMLS CUI [1,2]
C0678226
UMLS CUI [1,3]
C1947933
I have ... (of) financial problems concerning my care tasks.
Descrição

Financial problems concerning care tasks

Tipo de dados

integer

Alias
UMLS CUI [1,1]
C0549106
UMLS CUI [1,2]
C1947933
I have ... (of) support (from family / friends / neighbours / acquaintances / volunteers) in performing my care tasks.
Descrição

Support from others to perform care

Tipo de dados

integer

Alias
UMLS CUI [1,1]
C1514756
UMLS CUI [1,2]
C1521721
UMLS CUI [1,3]
C1947933
Indicate on a scale from 0 to 10 how happy you are feeling right now. 0 means "completely unhappy", whereas a 10 means "perfectly happy".
Descrição

Happy at the moment

Tipo de dados

float

Alias
UMLS CUI [1,1]
C0018592
UMLS CUI [1,2]
C0521116
Imagine the following: you and your loved one may select someone yourselves who will take over all your care tasks. There are no extra costs involved and this person will provide all transferred care tasks at your loved one’s home. Indicate on a scale from 0 to 10 how happy you would feel if this person would take over the care responsibilities from you. 0 means "completely unhappy", whereas 10 means "perfectly happy".
Descrição

Feeling a burden by care for the other one

Tipo de dados

float

Alias
UMLS CUI [1,1]
C1527305
UMLS CUI [1,2]
C1947933
UMLS CUI [1,3]
C1301771
Quality of life for yourself
Descrição

Quality of life for yourself

Alias
UMLS CUI-1
C0034380
UMLS CUI-2
C0085537
The following questions are about your ‘quality of life’. This refers to what you think about your life. For example, whether you are satisfied with your life, whether you have enjoyment in your life and whether your life gives you satisfaction. Please tick the box of the answer that best fits your situation. How is your quality of life in general?
Descrição

Quality of life in general

Tipo de dados

integer

Alias
UMLS CUI [1,1]
C0034380
UMLS CUI [1,2]
C0205246
Which report mark would you give your life at this moment? Enter a number between 0 and 10 here.
Descrição

Report mark for quality of life

Tipo de dados

integer

Alias
UMLS CUI [1,1]
C0441800
UMLS CUI [1,2]
C0034380
How is your quality of life in general, in comparison to one year ago?
Descrição

Comparison of quality of life to one year ago

Tipo de dados

integer

Alias
UMLS CUI [1,1]
C1707455
UMLS CUI [1,2]
C0034380
UMLS CUI [1,3]
C3898100
Closure
Descrição

Closure

Alias
UMLS CUI-1
C1707478
If you have any comments, please write them down in the space below: This is the end of the questionnaire. Thank you very much for completing the questionnaire.
Descrição

Comment

Tipo de dados

text

Alias
UMLS CUI [1]
C0947611
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Similar models

TOPICS-MDS Caregiver - Baseline and Follow-up (Mantelzorger, baseline en vervolgmeting)

1 Formulários
Name
Tipo
Description | Question | Decode (Coded Value)
Tipo de dados
Alias
Item Group
Date of birth, gender and postal code
C1320722 (UMLS CUI-1)
C0085537 (UMLS CUI-2)
Assessment date
Item
Date of filling in the questionnaire
date
C2985720 (UMLS CUI [1])
Date of birth of caregiver
Item
Date of birth
date
C2348576 (UMLS CUI [1,1])
C0085537 (UMLS CUI [1,2])
Item
Gender
text
C0079399 (UMLS CUI [1,1])
C0085537 (UMLS CUI [1,2])
Gender
Code List
Gender
CL Item
Male (1)
CL Item
Female (2)
Postal code
Item
Postal code (four numbers)
integer
C1514254 (UMLS CUI [1,1])
C0085537 (UMLS CUI [1,2])
Item Group
Date of birth, gender and postal code of your loved one
C1320722 (UMLS CUI-1)
C0017313 (UMLS CUI-2)
C1551356 (UMLS CUI-3)
Date of birth care receiver
Item
Date of birth of your loved one
date
C0421451 (UMLS CUI [1,1])
C0017313 (UMLS CUI [1,2])
C1551356 (UMLS CUI [1,3])
Item
Gender of your loved one
text
C0079399 (UMLS CUI [1,1])
C0017313 (UMLS CUI [1,2])
C1551356 (UMLS CUI [1,3])
Gender
Code List
Gender of your loved one
CL Item
Male (1)
CL Item
Female (2)
Postal code of care receiver
Item
Postal code of your loved one
integer
C1514254 (UMLS CUI [1,1])
C0017313 (UMLS CUI [1,2])
C1551356 (UMLS CUI [1,3])
Item Group
Relation to your loved one
C0439849 (UMLS CUI-1)
C0017313 (UMLS CUI-2)
C1551356 (UMLS CUI-3)
Item
What is your relationship with your loved one?
text
C0439849 (UMLS CUI [1,1])
C0085537 (UMLS CUI [1,2])
C0017313 (UMLS CUI [1,3])
C1551356 (UMLS CUI [1,4])
Relationship
Code List
What is your relationship with your loved one?
CL Item
I'm his/her husband/wife/life partner  (1)
CL Item
I'm his/her sister (-in-law), brother (-in-law) (2)
CL Item
I'm his/her daugher (-in-law), son (-in-law) (3)
CL Item
Other (4)
Specification of relationship
Item
If other, please specify
text
C2348235 (UMLS CUI [1,1])
C0439849 (UMLS CUI [1,2])
C0085537 (UMLS CUI [1,3])
C0017313 (UMLS CUI [1,4])
C1551356 (UMLS CUI [1,5])
Item
Do you live with your loved one?
integer
C0682072 (UMLS CUI [1,1])
C0017313 (UMLS CUI [1,2])
C1551356 (UMLS CUI [1,3])
Living situation with care receiver
Code List
Do you live with your loved one?
CL Item
Yes (1)
CL Item
No (0)
Item Group
Your health
C0018759 (UMLS CUI-1)
C0085537 (UMLS CUI-2)
Item
The following questions are about your health. Please tick the answer that best fits your situation. In general would you say your health is
text
C0424575 (UMLS CUI [1,1])
C0449438 (UMLS CUI [1,2])
Health status
Code List
The following questions are about your health. Please tick the answer that best fits your situation. In general would you say your health is
CL Item
Excellent (1)
CL Item
Very good  (2)
CL Item
Good (3)
CL Item
Fair (4)
CL Item
Poor (5)
Item
Compared to one year ago, how would you rate your health in general now?
text
C1707455 (UMLS CUI [1,1])
C0018759 (UMLS CUI [1,2])
C3898100 (UMLS CUI [1,3])
Health comparison
Code List
Compared to one year ago, how would you rate your health in general now?
CL Item
Much better than one year ago (1)
CL Item
A little better now than one year ago (2)
CL Item
About the same (3)
CL Item
Slightly worse now than one year ago  (4)
CL Item
Much worse now than one year ago (5)
Item Group
Time spent caring for your loved one
C0040223 (UMLS CUI-1)
C0680968 (UMLS CUI-2)
C1947933 (UMLS CUI-3)
Item
The following questions are about the amount of time that you spend caring for your loved one. You will be asked to write down whether you have given your loved one assistance for various activities of daily life. With ‘assistance’, we mean that you have supported your loved one in the task or have taken over the task entirely. Please fill in as accurately as possible the amount of time that you spend on all activities. For some caregivers it feels like they spend the whole day caring for their loved one. For example, because the care is very hard work. Even so, try to indicate as precisely as possible how much time you really spend caring for your loved one. There are questions further on in this questionnaire about how hard the care feels to you. Complete the questions based on how the previous week has been. Choose another week if your time expenditure in the previous week has been very different to the average week, for example due to illness or vacation. In the past week, have you had to help your loved one with household tasks such as preparing food and drinks, cleaning the house, washing, ironing and sewing clothing, shopping for groceries or odd jobs in the house or the garden due to his/her health problems?
integer
C1269765 (UMLS CUI [1,1])
C1521827 (UMLS CUI [1,2])
C0524819 (UMLS CUI [1,3])
C2987125 (UMLS CUI [1,4])
C1269765 (UMLS CUI [2,1])
C1947930 (UMLS CUI [2,2])
C2987125 (UMLS CUI [2,3])
C1269765 (UMLS CUI [3,1])
C0441648 (UMLS CUI [3,2])
C2987125 (UMLS CUI [3,3])
C1269765 (UMLS CUI [4,1])
C2713000 (UMLS CUI [4,2])
C2987125 (UMLS CUI [4,3])
C1269765 (UMLS CUI [5,1])
C2977585 (UMLS CUI [5,2])
C2987125 (UMLS CUI [5,3])
C1269765 (UMLS CUI [6,1])
C0150768 (UMLS CUI [6,2])
C2987125 (UMLS CUI [6,3])
C1269765 (UMLS CUI [7,1])
C0521114 (UMLS CUI [7,2])
C0043227 (UMLS CUI [7,3])
C3843862 (UMLS CUI [7,4])
C2987125 (UMLS CUI [7,5])
C1269765 (UMLS CUI [8,1])
C0521114 (UMLS CUI [8,2])
C0868963 (UMLS CUI [8,3])
C2987125 (UMLS CUI [8,4])
Assisted in preparing food/drinks, cleaning the house, washing, ironing, sewing clothing, shopping for groceries, odd jobs in the house or garden
Code List
The following questions are about the amount of time that you spend caring for your loved one. You will be asked to write down whether you have given your loved one assistance for various activities of daily life. With ‘assistance’, we mean that you have supported your loved one in the task or have taken over the task entirely. Please fill in as accurately as possible the amount of time that you spend on all activities. For some caregivers it feels like they spend the whole day caring for their loved one. For example, because the care is very hard work. Even so, try to indicate as precisely as possible how much time you really spend caring for your loved one. There are questions further on in this questionnaire about how hard the care feels to you. Complete the questions based on how the previous week has been. Choose another week if your time expenditure in the previous week has been very different to the average week, for example due to illness or vacation. In the past week, have you had to help your loved one with household tasks such as preparing food and drinks, cleaning the house, washing, ironing and sewing clothing, shopping for groceries or odd jobs in the house or the garden due to his/her health problems?
CL Item
No (0)
CL Item
Yes (1)
Hours/week of assistance in household activities
Item
If yes, how many hours have you had to help your loved one with household tasks?
integer
C0001288 (UMLS CUI [1,1])
C1269765 (UMLS CUI [1,2])
C2987125 (UMLS CUI [1,3])
C0556976 (UMLS CUI [1,4])
Item
In the past week, have you had to help your loved one with personal care (dressing and undressing, washing, combing, shaving), going to the toilet, moving around the house, eating, drinking or administering medication due to his/her health problems?
integer
C0476651 (UMLS CUI [1,1])
C2987125 (UMLS CUI [1,2])
C0686904 (UMLS CUI [2,1])
C1822189 (UMLS CUI [2,2])
C2987125 (UMLS CUI [2,3])
C1269765 (UMLS CUI [3,1])
C2371429 (UMLS CUI [3,2])
C2987125 (UMLS CUI [3,3])
C1279813 (UMLS CUI [4,1])
C2987125 (UMLS CUI [4,2])
C3469597 (UMLS CUI [5,1])
C3828841 (UMLS CUI [5,2])
C2987125 (UMLS CUI [5,3])
Assisted in preparing food/drinks, cleaning the house, washing, ironing, sewing clothing, shopping for groceries, odd jobs in the house or garden
Code List
In the past week, have you had to help your loved one with personal care (dressing and undressing, washing, combing, shaving), going to the toilet, moving around the house, eating, drinking or administering medication due to his/her health problems?
CL Item
No (0)
CL Item
Yes (1)
Hours/week of assistance in personal care
Item
If yes, how many hours have you had to help your loved one with personal care ?
integer
C0476651 (UMLS CUI [1,1])
C2987125 (UMLS CUI [1,2])
C0556976 (UMLS CUI [1,3])
Item
In the past week, have you had to help your loved one with moving around outside the house, going on outings and visiting family or friends, contacts with healthcare (accompanying him/her for example to the general practitioner, the hospital, therapy), arranging assistance, devices and/or home modifications and organising financial and administrative matters due to his/her health problems?
integer
C1269765 (UMLS CUI [1,1])
C2371431 (UMLS CUI [1,2])
C2987125 (UMLS CUI [1,3])
C1269765 (UMLS CUI [2,1])
C3842924 (UMLS CUI [2,2])
C1269765 (UMLS CUI [2,3])
C2987125 (UMLS CUI [2,4])
C1269765 (UMLS CUI [3,1])
C0332158 (UMLS CUI [3,2])
C0086388 (UMLS CUI [3,3])
C2987125 (UMLS CUI [3,4])
C1269765 (UMLS CUI [4,1])
C0420305 (UMLS CUI [4,2])
C2987125 (UMLS CUI [4,3])
C1269765 (UMLS CUI [5,1])
C0025080 (UMLS CUI [5,2])
C2987125 (UMLS CUI [5,3])
C1269765 (UMLS CUI [6,1])
C0850398 (UMLS CUI [6,2])
C2987125 (UMLS CUI [6,3])
C1269765 (UMLS CUI [7,1])
C0016114 (UMLS CUI [7,2])
C2987125 (UMLS CUI [7,3])
C1269765 (UMLS CUI [8,1])
C1292785 (UMLS CUI [8,2])
C2987125 (UMLS CUI [8,3])
C1300196 (UMLS CUI [9,1])
C1822167 (UMLS CUI [9,2])
C2987125 (UMLS CUI [9,3])
Assisted in preparing food/drinks, cleaning the house, washing, ironing, sewing clothing, shopping for groceries, odd jobs in the house or garden
Code List
In the past week, have you had to help your loved one with moving around outside the house, going on outings and visiting family or friends, contacts with healthcare (accompanying him/her for example to the general practitioner, the hospital, therapy), arranging assistance, devices and/or home modifications and organising financial and administrative matters due to his/her health problems?
CL Item
No (0)
CL Item
Yes (1)
Hours/week of assistance in moving around outside the house, going on outings and visiting family or friends, contacts with healthcare, arranging assistance, devices and/or home modifications and organising financial and administrative matters
Item
If yes, how many hours have you had to help your loved one with moving around outside the house, going on outings and visiting family or friends, contacts with healthcare (accompanying him/her for example to the general practitioner, the hospital, therapy), arranging assistance, devices and/or home modifications and organising financial and administrative matters due to his/her health problems?
integer
C1269765 (UMLS CUI [1,1])
C2987125 (UMLS CUI [1,2])
C0556976 (UMLS CUI [1,3])
Item
Does your loved one receive help from other caregivers or volunteers besides you?
integer
C0205394 (UMLS CUI [1,1])
C1521721 (UMLS CUI [1,2])
C0205394 (UMLS CUI [2,1])
C2367294 (UMLS CUI [2,2])
Assisted in preparing food/drinks, cleaning the house, washing, ironing, sewing clothing, shopping for groceries, odd jobs in the house or garden
Code List
Does your loved one receive help from other caregivers or volunteers besides you?
CL Item
No (0)
CL Item
Yes (1)
Other support than the caregiver
Item
If yes, how many hours per week did your loved one receive help from other caregivers or volunteers besides you?
integer
C0085537 (UMLS CUI [1,1])
C0205394 (UMLS CUI [1,2])
C1521721 (UMLS CUI [1,3])
C2584953 (UMLS CUI [1,4])
C0085537 (UMLS CUI [2,1])
C0205394 (UMLS CUI [2,2])
C2367294 (UMLS CUI [2,3])
C2584953 (UMLS CUI [2,4])
Item Group
How difficult is the care for you
C1299586 (UMLS CUI-1)
C1171174 (UMLS CUI-2)
How difficult is the care for you
Item
Indicate on a scale from 0 to 10 how hard you are finding it to care for your loved one. The closer to ‘0’, the less hard you find the care. The closer to ‘10’, the harder you find the care. Ticking 0 means "not difficult at all", whereas a 10 stands for "far too difficult".
float
C1299586 (UMLS CUI [1,1])
C1171174 (UMLS CUI [1,2])
Item
The following questions are about your situation as a caregiver. I gain ... (of) satisfaction from performing my care tasks.
integer
C0242428 (UMLS CUI [1,1])
C0597198 (UMLS CUI [1,2])
C1947933 (UMLS CUI [1,3])
Satisfied by performing care tasks
Code List
The following questions are about your situation as a caregiver. I gain ... (of) satisfaction from performing my care tasks.
CL Item
no (1)
CL Item
some  (2)
CL Item
a lot (3)
Item
I have ... (of) problems with my loved one (for example, he/she is demanding, we have communication problems, he/she has started behaving differently).
integer
C0425168 (UMLS CUI [1,1])
C0085537 (UMLS CUI [1,2])
C0017313 (UMLS CUI [1,3])
C1551356 (UMLS CUI [1,4])
Satisfied by performing care tasks
Code List
I have ... (of) problems with my loved one (for example, he/she is demanding, we have communication problems, he/she has started behaving differently).
CL Item
no (1)
CL Item
some (2)
CL Item
a lot (3)
Item
I have ... (of) problems with my own mental health (for example stress, anxiety, despondency, concern about the future).
integer
C1446377 (UMLS CUI [1])
Satisfied by performing care tasks
Code List
I have ... (of) problems with my own mental health (for example stress, anxiety, despondency, concern about the future).
CL Item
no (1)
CL Item
some (2)
CL Item
a lot (3)
Item
I have ... (of) problems with my own physical health (for example being sick more often, fatigue, physical overexertion).
integer
C0033213 (UMLS CUI [1,1])
C0517226 (UMLS CUI [1,2])
Satisfied by performing care tasks
Code List
I have ... (of) problems with my own physical health (for example being sick more often, fatigue, physical overexertion).
CL Item
no (1)
CL Item
some (2)
CL Item
a lot (3)
Item
I have ... (of) problems combining my daily activities (for example work, household, education, family and free time) with my care tasks.
integer
C0740765 (UMLS CUI [1,1])
C0678226 (UMLS CUI [1,2])
C1947933 (UMLS CUI [1,3])
Satisfied by performing care tasks
Code List
I have ... (of) problems combining my daily activities (for example work, household, education, family and free time) with my care tasks.
CL Item
no (1)
CL Item
some (2)
CL Item
a lot (3)
Item
I have ... (of) financial problems concerning my care tasks.
integer
C0549106 (UMLS CUI [1,1])
C1947933 (UMLS CUI [1,2])
Satisfied by performing care tasks
Code List
I have ... (of) financial problems concerning my care tasks.
CL Item
no (1)
CL Item
some (2)
CL Item
a lot (3)
Item
I have ... (of) support (from family / friends / neighbours / acquaintances / volunteers) in performing my care tasks.
integer
C1514756 (UMLS CUI [1,1])
C1521721 (UMLS CUI [1,2])
C1947933 (UMLS CUI [1,3])
Satisfied by performing care tasks
Code List
I have ... (of) support (from family / friends / neighbours / acquaintances / volunteers) in performing my care tasks.
CL Item
no (1)
CL Item
some (2)
CL Item
a lot (3)
Happy at the moment
Item
Indicate on a scale from 0 to 10 how happy you are feeling right now. 0 means "completely unhappy", whereas a 10 means "perfectly happy".
float
C0018592 (UMLS CUI [1,1])
C0521116 (UMLS CUI [1,2])
Feeling a burden by care for the other one
Item
Imagine the following: you and your loved one may select someone yourselves who will take over all your care tasks. There are no extra costs involved and this person will provide all transferred care tasks at your loved one’s home. Indicate on a scale from 0 to 10 how happy you would feel if this person would take over the care responsibilities from you. 0 means "completely unhappy", whereas 10 means "perfectly happy".
float
C1527305 (UMLS CUI [1,1])
C1947933 (UMLS CUI [1,2])
C1301771 (UMLS CUI [1,3])
Item Group
Quality of life for yourself
C0034380 (UMLS CUI-1)
C0085537 (UMLS CUI-2)
Item
The following questions are about your ‘quality of life’. This refers to what you think about your life. For example, whether you are satisfied with your life, whether you have enjoyment in your life and whether your life gives you satisfaction. Please tick the box of the answer that best fits your situation. How is your quality of life in general?
integer
C0034380 (UMLS CUI [1,1])
C0205246 (UMLS CUI [1,2])
Quality of life in general
Code List
The following questions are about your ‘quality of life’. This refers to what you think about your life. For example, whether you are satisfied with your life, whether you have enjoyment in your life and whether your life gives you satisfaction. Please tick the box of the answer that best fits your situation. How is your quality of life in general?
CL Item
Excellent (1)
CL Item
Very good (2)
CL Item
Good (3)
CL Item
Fair (4)
CL Item
Poor (5)
Report mark for quality of life
Item
Which report mark would you give your life at this moment? Enter a number between 0 and 10 here.
integer
C0441800 (UMLS CUI [1,1])
C0034380 (UMLS CUI [1,2])
Item
How is your quality of life in general, in comparison to one year ago?
integer
C1707455 (UMLS CUI [1,1])
C0034380 (UMLS CUI [1,2])
C3898100 (UMLS CUI [1,3])
Comparison of quality of life to one year ago
Code List
How is your quality of life in general, in comparison to one year ago?
CL Item
Much better (1)
CL Item
A little better (2)
CL Item
About the same (3)
CL Item
Slightly worse (4)
CL Item
Much worse (5)
Item Group
Closure
C1707478 (UMLS CUI-1)
Comment
Item
If you have any comments, please write them down in the space below: This is the end of the questionnaire. Thank you very much for completing the questionnaire.
text
C0947611 (UMLS CUI [1])
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