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ID

41900

Beschreibung

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

Stichworte

Versionen (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
Rechteinhaber

Radboud University Medical Center, Department of Geriatric Medicine

Hochgeladen am

11 février 2021

DOI

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Lizenz

Creative Commons BY-NC 4.0
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    TOPICS-MDS

    Englisch Niederländisch

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

    1 Formulare  
    Date of birth, gender and postal code
    Beschreibung

    Date of birth, gender and postal code

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

    Assessment date

    Datentyp

    date

    Alias
    UMLS CUI [1]
    C2985720
    Date of birth
    Beschreibung

    Date of birth of caregiver

    Datentyp

    date

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

    Gender

    Datentyp

    text

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

    Postal code

    Datentyp

    integer

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

    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
    Beschreibung

    Date of birth care receiver

    Datentyp

    date

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

    Gender of care receiver

    Datentyp

    text

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

    Four numbers

    Datentyp

    integer

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

    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?
    Beschreibung

    Relationship to care receiver

    Datentyp

    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
    Beschreibung

    Specification of relationship

    Datentyp

    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?
    Beschreibung

    Living situation with care receiver

    Datentyp

    integer

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

    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
    Beschreibung

    Health status

    Datentyp

    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?
    Beschreibung

    Health comparison to past year

    Datentyp

    text

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

    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?
    Beschreibung

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

    Datentyp

    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?
    Beschreibung

    Hours/week of assistance in household activities

    Datentyp

    integer

    Maßeinheiten
    • 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?
    Beschreibung

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

    Datentyp

    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 ?
    Beschreibung

    Hours/week of assistance in personal care

    Datentyp

    integer

    Maßeinheiten
    • 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?
    Beschreibung

    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

    Datentyp

    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?
    Beschreibung

    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

    Datentyp

    integer

    Maßeinheiten
    • 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?
    Beschreibung

    Other support than the caregiver

    Datentyp

    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?
    Beschreibung

    Other support than the caregiver

    Datentyp

    integer

    Maßeinheiten
    • 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
    Beschreibung

    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".
    Beschreibung

    How difficult is the care for you

    Datentyp

    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.
    Beschreibung

    Satisfied by performing care tasks

    Datentyp

    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).
    Beschreibung

    Having problems with the loved one

    Datentyp

    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).
    Beschreibung

    Having problems with own mental health

    Datentyp

    integer

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

    Having problems with own physical health

    Datentyp

    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.
    Beschreibung

    Difficulty to combine daily activities with care tasks

    Datentyp

    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.
    Beschreibung

    Financial problems concerning care tasks

    Datentyp

    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.
    Beschreibung

    Support from others to perform care

    Datentyp

    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".
    Beschreibung

    Happy at the moment

    Datentyp

    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".
    Beschreibung

    Feeling a burden by care for the other one

    Datentyp

    float

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

    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?
    Beschreibung

    Quality of life in general

    Datentyp

    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.
    Beschreibung

    Report mark for quality of life

    Datentyp

    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?
    Beschreibung

    Comparison of quality of life to one year ago

    Datentyp

    integer

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

    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.
    Beschreibung

    Comment

    Datentyp

    text

    Alias
    UMLS CUI [1]
    C0947611
    Zum Seitenanfang zurückkehren

    Ähnliche Modelle

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

    1 Formulare
    Name
    Typ
    Description | Question | Decode (Coded Value)
    Datentyp
    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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