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Swedish Stroke Registry RIKSSTROKE - Acute Phase for Registration of Stroke

- 20.09.21 - 1 Formular, 12 Itemgruppen, 122 Datenelemente, 2 Sprachen
Itemgruppen: Acute Phase for Registration of Stroke - Personal Information, Sequence of care, Aftercare, ADL/Accommodation BEFORE ONSET of stroke, Risk Factors Stroke, Acute Care/Diagnosis Stroke, Pharmaceutical Treatment, Thrombolysis, Thrombectomy, Hemicraniectomy, Information and Follow-up, Rehabilitation
Schwedisches Schlaganfallregister RIKSSTROKE Quelle: http://www.riksstroke.org/eng/ Riksstroke – a Swedish national quality register for stroke care primarily aimed at health professionals and decision makers in health care. We collect, analyze and follow-up data on morbidity and hospital stay. Acute Phase for Registration of Stroke

Admitted subacute and non-acute hospital care DSS 2015-16 Metadata Online Registry (METeOR)

- 03.08.16 - 1 Formular, 2 Itemgruppen, 10 Datenelemente, 1 Sprache
Itemgruppen: Episode of admitted patient care, Person
Health sector data set specifications from METeOR, Australia's repository for national metadata standards, developed by the Australian Institute of Health and Welfare (http://meteor.aihw.gov.au/content/index.phtml/itemId/345165) Admitted subacute and non-acute hospital care DSS 2015-16 The Admitted subacute and non-acute hospital care data set specification (DSS) aims to ensure national consistency in relation to defining and collecting information about care provided to subacute and non-acute admitted public and private patients in activity based funded public hospitals. Subacute care in this DSS is identified as admitted episodes in rehabilitation care, palliative care, geriatric evaluation and management care and psychogeriatric care, whereas maintenance care is identified as non-acute care. The scope of the DSS is: • Same day and overnight admitted subacute and non-acute care episodes. • Admitted public patients provided on a contracted basis by private hospitals. • Admitted patients in rehabilitation care, palliative care, geriatric evaluation and management, psychogeriatric and maintenance care treated in the hospital-in-the-home. Excluded from the scope are: • Hospitals operated by the Australian Defence Force, correctional authorities and Australia's external territories. © Australian Institute of Health and Welfare 2015 Metadata and Classifications Unit Australian Institute of Health and Welfare GPO Box 570 Canberra ACT 2601

TOPICS-MDS - TOPICS Short Form 2017

- 18.11.20 - 1 Formular, 8 Itemgruppen, 23 Datenelemente, 2 Sprachen
Itemgruppen: Administrative Documentation, General health, Pain/discomfort, Brain functions, Tasks and activities of daily life, Feelings past 4 weeks, Social activities, Closure
The TOPICS – Short Form 2017 including Casemix forms were developed by the TOPICS-MDS team in collaboration with the Nederlandse Vereniging voor Klinische Geriatrie (NvKG – Dutch Association for Clinical Geriatrics) to use as a Patient Reported Outcome Measure (PROM) in the Dutch outpatient and clinical daily practice. In this version the casemix variables were left out of the Dutch version (with permission by the TOPICS-MDS team), as they are currently not available for the English version. The short forms (including casemix variables for various situations and follow-up in Dutch) can be found on https://topics-mds.eu/topics-short-form/ as pdfs. More information on the public data repository TOPICS-MDS can be found at https://topics-mds.eu/. English Instructions (Dutch Version below): Your experiences as a care receiver are valuable. This list contains questions about your physical and mental health and quality of life. Your answers will be used in research to improve care for the elderly. The more information there is about care for elderly people, the more this can be taken into consideration. Therefore, your experiences are also valuable for other elderly people. Instructions for this questionnaire: - Completing this questionnaire will take approximately 10 minutes. - If you find it difficult to understand or answer the questions, ask your partner, a family member or a friend to help you. - Read each question through completely before selecting an answer. - When you are done, please check that you have not forgotten any questions. Nederlandse Aanwijzingen: Uw ervaringen zijn waardevol. In deze lijst staan vragen over uw lichamelijke en geestelijke gezondheid en kwaliteit van leven. Uw antwoorden worden gebruikt om de zorg voor ouderen in kaart te brengen. Want hoe meer er bekend is over zorg voor ouderen, hoe beter er rekening mee gehouden kan worden. Uw ervaringen zijn dus waardevol, ook voor andere ouderen. Aanwijzingen bij deze vragenlijst: - Het invullen van de vragenlijst kost u ongeveer 10 minuten. - Als u het moeilijk vindt om de vragen te begrijpen of in te vullen, vraag dan hulp aan uw partner, een familielid of vriend. - Lees elke vraag eerst helemaal door voordat u een antwoord kiest. - Bent u klaar, kijk dan of u geen vragen vergeten bent.

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

- 11.02.21 - 1 Formular, 8 Itemgruppen, 34 Datenelemente, 2 Sprachen
Itemgruppen: Administrative Documentation, Administrative Documentation of Care Receiver, Relation to your loved one, Your health, Time spent caring for your loved one, How difficult is the care for you, Quality of life for yourself, Closure
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.

TOPICS-MDS - TOPICS-MDS Care Receiver Baseline + Follow-up (Zorgvrager Basismeting + Vervolgmeting)

- 27.09.21 - 1 Formular, 12 Itemgruppen, 97 Datenelemente, 2 Sprachen
Itemgruppen: Baseline / Follow-up, Administrative Data, Personal information, Living situation, Health and disease, Tasks and activities of daily life, Mouth care and complaints with mouth, jaws or temples, How you are feeling, Social activities, Quality of life, Your care use, Closure
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 care receiver for the Baseline and Follow-up measurement. For follow-up, please note that for each follow-up measurement separately, all questions containing ‘12 months’ / ‘12 maanden’, the 12 needs to be replaced by the actual follow-up period. For example, when follow-up takes place after 3 months, the 12 is replaced by ‘3’. Additionally some questions are not needed for follow-up: From "Personal Information" only the marital status is needed. From "Health and Disease" the questions about the diseases are optional. They are recommended, if you want to use the frailty index. English Instructions for the participant (Dutch version below): Your experiences as a care receiver are valuable. You receive care. This list contains questions about what this care means for you as a care receiver. Your answers will be used in research to improve care for the elderly. The more information there is about care for elderly people, the more this 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 elderly people. Instructions for this questionnaire: - Completing this questionnaire will take approximately half an hour. - Read each question through completely before selecting an answer. - If you find it difficult to understand or answer the questions, ask your partner, a family member or a friend to help you. - 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: Uw ervaringen als zorgvrager zijn waardevol. In deze lijst staan vragen over uw lichamelijke en geestelijke gezondheid, kwaliteit van leven en zorggebruik. Uw antwoorden worden gebruikt in onderzoek naar verbetering van de zorg voor ouderen. Want hoe meer er bekend is over wat ouderen zelf vinden, hoe beter er rekening mee gehouden kan worden. Bijvoorbeeld bij het veranderen van voorzieningen, regelingen of wetten voor zorg en welzijn. Uw ervaringen zijn dus waardevol, ook voor andere ouderen. Aanwijzingen bij deze vragenlijst: Het invullen van de vragenlijst kost u ongeveer een half uur. Lees elke vraag eerst helemaal door voordat u een antwoord geeft. Als u het moeilijk vindt om de vragen te begrijpen of in te vullen, vraag dan hulp aan uw partner, een familielid of vriendof vriendin. 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.

Admitted subacute and non-acute hospital care DSS 2015-16 Admitted patient care NMDS 2015-16 Metadata Online Registry (METeOR)

- 03.08.16 - 1 Formular, 11 Itemgruppen, 42 Datenelemente, 1 Sprache
Itemgruppen: Address, Contracted hospital care, Episode of admitted patient care (newborn), Episode of admitted patient care, Episode of care, Establishment, Hospital service, Injury event, Patient, Person, Record
Health sector data set specifications from METeOR, Australia's repository for national metadata standards, developed by the Australian Institute of Health and Welfare (http://meteor.aihw.gov.au/content/index.phtml/itemId/345165) Admitted patient care NMDS 2015-16 The purpose of the Admitted patient care national minimum data set (APC NMDS) is to collect information about care provided to admitted patients in Australian hospitals. The scope of the APC NMDS is episodes of care for admitted patients in all public and private acute and psychiatric hospitals, free standing day hospital facilities and alcohol and drug treatment centres in Australia. Hospitals operated by the Australian Defence Force, corrections authorities and in Australia's off-shore territories may also be included. Hospitals specialising in dental, ophthalmic aids and other specialised acute medical or surgical care are included. Hospital boarders and still births are not included as they are not admitted to hospital. Posthumous organ procurement episodes are also not included. © Australian Institute of Health and Welfare 2015 Metadata and Classifications Unit Australian Institute of Health and Welfare GPO Box 570 Canberra ACT 2601

Admitted patient care NMDS 2015-16 Metadata Online Registry (METeOR)

- 03.08.16 - 1 Formular, 11 Itemgruppen, 42 Datenelemente, 1 Sprache
Itemgruppen: Address, Contracted hospital care, Episode of admitted patient care (newborn), Episode of admitted patient care, Episode of care, Establishment, Hospital service, Injury event, Patient, Person, Record
Health sector data set specifications from METeOR, Australia's repository for national metadata standards, developed by the Australian Institute of Health and Welfare (http://meteor.aihw.gov.au/content/index.phtml/itemId/345165) Admitted patient care NMDS 2015-16 The purpose of the Admitted patient care national minimum data set (APC NMDS) is to collect information about care provided to admitted patients in Australian hospitals. The scope of the APC NMDS is episodes of care for admitted patients in all public and private acute and psychiatric hospitals, free standing day hospital facilities and alcohol and drug treatment centres in Australia. Hospitals operated by the Australian Defence Force, corrections authorities and in Australia's off-shore territories may also be included. Hospitals specialising in dental, ophthalmic aids and other specialised acute medical or surgical care are included. Hospital boarders and still births are not included as they are not admitted to hospital. Posthumous organ procurement episodes are also not included. © Australian Institute of Health and Welfare 2015 Metadata and Classifications Unit Australian Institute of Health and Welfare GPO Box 570 Canberra ACT 2601

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