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

- 27-09-21 - 1 Formulier, 12 Itemgroepen, 97 Data-elementen, 2 Talen
Itemgroepen: 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.

Eligibility Caregivers NCT00558402

- 20-09-21 - 1 Formulier, 2 Itemgroepen, 10 Data-elementen, 1 Taal
Itemgroepen: Inclusion Criteria, Exclusion Criteria
Meditation or Education for Alzheimer Caregivers; ODM derived from: https://clinicaltrials.gov/show/NCT00558402

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

- 11-02-21 - 1 Formulier, 8 Itemgroepen, 34 Data-elementen, 2 Talen
Itemgroepen: 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.

Measurement Instrument Database for the Social Science (MIDSS) - Caregiver Burden Scale

- 30-06-20 - 1 Formulier, 16 Itemgroepen, 60 Data-elementen, 1 Taal
Itemgroepen: Caregiver Burden Scale, Transportation, Housekeeping, Cooking, Shopping, Decision Making, Financial Record Keeping, Walking, Making House Repairs, Farming/Yard Work, Administering Medication, Dressing, Bathing, Eating, Toileting, Leaving Patient Unattended
Macera, C.A., Eaker, E.D., Jannarone, R.J., Davis, D.R., Stoskopf, C.H.. (1993). Caregiver Burden Scale. Measurement Instrument Database for the Social Science. Retrieved 30/06/2020, from www.midss.ie Key references: Macera, C.A., Eaker, E.D., Jannarone, R.J., Davis, D.R., Stoskopf, C.H., 1993. A Measure of Perceived Burden among Caregivers. Evaluation & the Health Professions 16 (2), 204–211. Primary use / Purpose: To assess perceived burden among people caring for others with disabilities. Background: This caregiver burden scale was developed to assess perceived burden among caregivers of family members with dementia. While everyone who is a caregiver will assist with tasks for their family member with dementia, our previous research found that burden was more than just the number or type of tasks for which the patient required assistance. By obtaining a measure of the caregivers' perceived burden associated with each of 15 possible tasks, we were able to narrow down the source of stress in a way that could lead to effective interventions. Psychometrics: Internal consistency of the scale: 0.87 Correlation with depressive symptoms (CES-D): 0.38 (p<0.001). Scoring Three domains are measured from this scale. The first one, defined as patient needs, is a sum of the 15 items providing a range of 0-15. The second one, defined as caregiver tasks, is the sum of the tasks for which the caregiver provided assistance. The range could be 0-15, but cannot be higher than the sum of the patient needs. The third domain, caregiver burden, is a sum of the items for which the patient needed assistance AND the caregiver provided assistance AND the caregiver reported that providing this assistance was stressful. The possible range was 0-15 but could not be higher than the number of caregiver tasks. Digital Object Identifier (DOI): http://dx.doi.org/10.13072/midss.389

ICHOM Older Person - Baseline and Follow-up - Caregiver-reported

- 30-04-20 - 1 Formulier, 3 Itemgroepen, 7 Data-elementen, 1 Taal
Itemgroepen: Administrative Data, Carer burden, Place of death
ICHOM Older Person data collection Version 1.0.4 Revised: July 12, 2017 International Consortium for Health Outcomes Measurement (ICHOM), Source: http://www.ichom.org/ Notice: This work was conducted using resources from ICHOM, the International Consortium for Health Outcomes Measurement (www.ICHOM.org). The content is solely the responsibility of the authors and does not necessarily represent the official views of ICHOM. For Older Persons, the following treatment approaches are covered by our Standard Set. Treatment approaches: These have not been defined due to the wide range of management options and interventions for an older population. A number of potentially inappropriate medications have been listed as ‘medication variables’. This document contains the Baseline and Follow-up Caregiver-reported Form. It has to be filled in at patient's entry into the set (Baseline). For Follow-up: fill in at least annually, but may be filled in more often (annually for a 69 year old person not admitted to hospital within 1 year, but 6-monthly for a 84 year old person). Collecting Patient-Reported Outcome Measures: Medical Outcomes Study: 36-Item Short Form Survey Instrument Version 1 (SF-36). RAND owns the copyright. All of the surveys and tools from RAND Health are public documents, available without charge. No further written permission is needed for use of this Health Survey. For more information see http://www. rand.org/health/surveys_tools/mos/mos_ core_36item_survey.html UCLA 3-Item Loneliness Scale. Hughes ME, Waite LJ, Hawkley LC, Cacioppo JT (2004) A short scale for measuring loneliness in large surveys: Results from two population-based studies. Res Aging 26(6):655–672. Barthel Index. The Maryland State Medical Society holds the copyright for the Barthel Index. It may be used freely for non- commercial purposes with the following citation: Mahoney FI, Barthel D. “Functional evaluation: the Barthel Index.” Maryland State Med Journal 1965;14:56-61. Permission is required to modify the Barthel Index or to use it for commercial purposes. ASCOT Toolkit. As a license agreement is needed for use of this questionnaire, the used question will not be included in this version of the standard set word-for-word. Canadian Study on Health & Aging Clinical Frailty Scale. As a permission is needed for use, the scale will not be included in this version of the standard set word-for-word. Zarit Burden Interview. A license agreement might be neccessary for use of the long version of this questionnaire, for more information see https://eprovide.mapi-trust.org/instruments/zarit-burden-interview . For the used 4-item version (Questions 2, 3, 9, 19) see: Michel Bédard, D. William Molloy, Larry Squire, Sacha Dubois, Judith A. Lever, Martin O'Donnell, The Zarit Burden Interview: A New Short Version and Screening Version, The Gerontologist, Volume 41, Issue 5, 1 October 2001, Pages 652–657, https://doi.org/10.1093/geront/41.5.652. As license for use of this questionaire is not certain at the moment, only the total score will be included in this version of the standard set. Reference: Akpan A, Roberts C, Bandeen-Roche K, et al. Standard set of health outcome measures for older persons. BMC Geriatr. 2018;18(1):36. Published 2018 Feb 2. doi:10.1186/s12877-017-0701-3 (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5797357/) The Standard set of ICHOM was supported by NHS England. For this version of the standard set, semantic annotation with UMLS CUIs has been added.

Merkmalskatalog - Fragebögen

- 11-05-18 - 1 Formulier, 6 Itemgroepen, 18 Data-elementen, 2 Talen
Itemgroepen: MFI-Sum, SF-12, Caregiver Burden (EUROTOLD), Anxiety (GAD-7), Ambivalence Scale, Resilience (RS-13)
Fragebögen Merkmalskatalog

Guide registration and admission, University Hospital Cologne

- 24-04-17 - 1 Formulier, 1 Itemgroep, 34 Data-elementen, 1 Taal
Itemgroep: Guide admission form
Hospital Routine Documentation Subform at the University Hospital Cologne. Original Form name: Lotsen_anmeldung

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