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

- 6/30/20 - 1 form, 16 itemgroups, 60 items, 1 language
Itemgroups: 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

- 4/30/20 - 1 form, 3 itemgroups, 7 items, 1 language
Itemgroups: 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.

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