The Dementia Quality of Life Scale for Older Family Carers (DQoL-OC) Study
DQoL-OC
Development of the Dementia Quality of Life Scale for Older Family Carers of People With Dementia (DQoL-OC) and Evaluation of Its Psychometric Properties
2 other identifiers
observational
300
1 country
14
Brief Summary
The purpose of this research is to develop the "DQoL-OC", a unique questionnaire to evaluate the quality of life of people aged 60 or above providing care for a family member with Alzheimer's disease or other related dementia at home in the UK. This questionnaire is aimed at allowing researchers, health and social professionals, as well as the older family carers themselves, to quantify the impact caring in different aspects life, for the purposes of economic evaluation or implementation and evaluation of interventions. The results from this study will also help us to understand better the aspects that affect carers' quality of life and well-being, which may guide future policies and the support provided to older family carers in the future. The DQoL-OC is being developed in two parts. The first part is now completed and was carried out through focus groups with older family carers for discussions about important aspects related to their quality of life and well-being in order to create the items of the new questionnaire. Its preliminary version contains 100 questions about the practical aspects of care and caregiving, carers' feelings and concerns and satisfaction with life and with the caring role. The second part of the DQoL-OC development is currently being carried out and aims to evaluate its validity and reliability for use with older family carers and to reduce it into a smaller number of items. About 300 older family carers are invited to answer individually the DQoL-OC and other similar questionnaires for these purposes. About 25 participants taking part in this study are invited to answer the same questions with an interval of two weeks in order to allow us to compare the results and its stability over this period of time.
Trial Health
Trial Health Score
Automated assessment based on enrollment pace, timeline, and geographic reach
participants targeted
Target at P75+ for all trials
Started Aug 2015
Shorter than P25 for all trials
14 active sites
Health score is calculated from publicly available data and should be used for screening purposes only.
Trial Relationships
Click on a node to explore related trials.
Study Timeline
Key milestones and dates
First Submitted
Initial submission to the registry
June 2, 2015
CompletedFirst Posted
Study publicly available on registry
June 4, 2015
CompletedStudy Start
First participant enrolled
August 1, 2015
CompletedPrimary Completion
Last participant's last visit for primary outcome
February 1, 2016
CompletedStudy Completion
Last participant's last visit for all outcomes
February 1, 2016
CompletedDecember 3, 2015
December 1, 2015
6 months
June 2, 2015
December 1, 2015
Conditions
Outcome Measures
Primary Outcomes (1)
Health related quality of life (HRQoL)
Questionnaire
8 months
Secondary Outcomes (3)
Health status
8 months
Caring issues
8 months
Socio-demographic data
8 months
Eligibility Criteria
Older family carers: To be an old person (between 60 and 100 years old), currently providing care for a family member with dementia (carers' self-report) at home in the UK, to understand and speak English, to accept to participate of the study
You may qualify if:
- To be aged between 60 and 100 years old;
- To be currently providing care for a family member with dementia (carers' -self-report) at home in the UK;
- To speak and understand English;
- To show an interest in participating in the research.
You may not qualify if:
- To be aged under 60 years old or above 100 years old;
- To provide paid care for the person with dementia;
- Those with no familiar relationship with the person being cared for;
- The family member with dementia is not being cared for at home;
- The care is not provided in the UK;
- The family member being cared for does not have dementia;
- Do not speak or understand English.
Contact the study team to confirm eligibility.
Sponsors & Collaborators
Study Sites (14)
Clinical Commissioning Group - Nottingham North & East GP practices
Arnold, Nottinghamshire, NG5 6LU, United Kingdom
Community Mental Health Services for Older People - Mansfield and Ashfield Memory Assessment Service
Ashfield, Nottinghamshire, NG174JL, United Kingdom
Clinical Commissioning Group - Newark and Sherwood GP practices
Balderton, Nottinghamshire, NG24 3HJ, United Kingdom
Clinical Commissioning Group - Mansfield and Ashfield GP practices
Mansfield, Nottinghamshire, NG21 OHJ, United Kingdom
Community Mental Health Services for Older People - Newark and Sherwood Memory Assessment Service
Newark, Nottinghamshire, NG24 4DE, United Kingdom
Clinical Commissioning Group - Bassetlaw GP practices
Nottingham, Nottinghamshire, DN22 7XF, United Kingdom
Clinical Commissioning Group - Nottingham City GP practices
Nottingham, Nottinghamshire, NG1 6GN, United Kingdom
Clinical Commissioning Group - Rushcliffe GP practices
Nottingham, Nottinghamshire, NG11 6LQ, United Kingdom
Community Mental Health Services for Older People - Rushcliffe Memory Assessment Service
Nottingham, Nottinghamshire, NG2 6PR, United Kingdom
Community Mental Health Services for Older People - City Memory Assessment Service
Nottingham, Nottinghamshire, NG5 1PB, United Kingdom
Community Mental Health Services for Older People - Gedling and Huckanall Memory Assessment Service
Nottingham, Nottinghamshire, NG5 1PB, United Kingdom
Community Mental Health Services for Older People - Brostowe Memory Assessment Service
Nottingham, Nottinghamshire, NG9 8DB, United Kingdom
Clinical Commissioning Group - Nottingham West GP practices
Stapleford, Nottinghamshire, NG9 8DB, United Kingdom
Community Mental Health Services for Older People - Bassetlaw Memory Assessment Service
Worksop, Nottinghamshire, S810BD, United Kingdom
Related Publications (29)
BARTLETT, M. S. 1954. A note on multiplying factors for various chi-squared approximations. Joural of the Royal Statistical Society, Series B, 296-298.
BACKGROUNDBleichrodt H, Johannesson M. An experimental test of a theoretical foundation for rating-scale valuations. Med Decis Making. 1997 Apr-Jun;17(2):208-16. doi: 10.1177/0272989X9701700212.
PMID: 9107617BACKGROUNDde Boer AG, van Lanschot JJ, Stalmeier PF, van Sandick JW, Hulscher JB, de Haes JC, Sprangers MA. Is a single-item visual analogue scale as valid, reliable and responsive as multi-item scales in measuring quality of life? Qual Life Res. 2004 Mar;13(2):311-20. doi: 10.1023/B:QURE.0000018499.64574.1f.
PMID: 15085903BACKGROUNDCaballero FF, Miret M, Power M, Chatterji S, Tobiasz-Adamczyk B, Koskinen S, Leonardi M, Olaya B, Haro JM, Ayuso-Mateos JL. Validation of an instrument to evaluate quality of life in the aging population: WHOQOL-AGE. Health Qual Life Outcomes. 2013 Oct 23;11:177. doi: 10.1186/1477-7525-11-177.
PMID: 24152691BACKGROUNDCarlsson AM. Assessment of chronic pain. I. Aspects of the reliability and validity of the visual analogue scale. Pain. 1983 May;16(1):87-101. doi: 10.1016/0304-3959(83)90088-X.
PMID: 6602967BACKGROUNDCOSTELLO, A. & OSBORNE, J. 2005. Best Practices in Exploratory Factor Analysis: Four Recommendations for Getting the Most From Your Analysis. Practical Assessment and Research Evaluation, 10, 1-9.
BACKGROUNDCRESWELL, J. W. & CLARK, V. L. P. 2011. Designing and conducting mixed methods research, SAGE.
BACKGROUNDDiener E, Emmons RA, Larsen RJ, Griffin S. The Satisfaction With Life Scale. J Pers Assess. 1985 Feb;49(1):71-5. doi: 10.1207/s15327752jpa4901_13.
PMID: 16367493BACKGROUNDDZIUBAN, C. D. & SHIRKEY, E. C. 1974. When is a correlation matrix appropriate for factor analysis? Some decision rules. Psychological Bulletin, 81, 358-361
BACKGROUNDEuroQol Group. EuroQol--a new facility for the measurement of health-related quality of life. Health Policy. 1990 Dec;16(3):199-208. doi: 10.1016/0168-8510(90)90421-9.
PMID: 10109801BACKGROUNDFABRIGAR, L., WEGENER, D., MACCALLUM, R. & STRAHAN, E. 1999. Evaluating the use of exploratory factor analysis in psychological research. Psychological Methods, 4, 272-299
BACKGROUNDKAISER, H. F. 1970. A second generation little jiffy. Psychometrika, 35, 401-415.
BACKGROUNDKAISER HF, CAFFREY J. ALPHA FACTOR ANALYSIS. Psychometrika. 1965 Mar;30:1-14. doi: 10.1007/BF02289743. No abstract available.
PMID: 14293189BACKGROUNDLandis JR, Koch GG. The measurement of observer agreement for categorical data. Biometrics. 1977 Mar;33(1):159-74.
PMID: 843571BACKGROUNDLeung KF, Liu FB, Zhao L, Fang JQ, Chan K, Lin LZ. Development and validation of the Chinese Quality of Life Instrument. Health Qual Life Outcomes. 2005 Apr 16;3:26. doi: 10.1186/1477-7525-3-26.
PMID: 15833138BACKGROUNDLUNDBERG, L., JOHANNESSON, M., ISACSON, D. G. L. & BORGQUIST, L. 1999. Health state utilities in a general population in relation to age, gender and socioeconomic factors. Eur J Pub Health, 9, 211-217.
BACKGROUNDMACCALLUM, R., WIDAMAN, K., ZHANG, S. & HONG, S. 1999. Sample size in factor analysis. Psychological Methods, 4, 84-99.
BACKGROUNDMUNDFROM, D., SHAW, D. & KE, T. 2005. Minimum Sample Size Recommendations for Conducting Factor Analyses. International Journal of Testing, 5, 159-168.
BACKGROUNDNagpal J, Kumar A, Kakar S, Bhartia A. The development of 'Quality of Life Instrument for Indian Diabetes patients (QOLID): a validation and reliability study in middle and higher income groups. J Assoc Physicians India. 2010 May;58:295-304.
PMID: 21117348BACKGROUNDPolit DF, Beck CT. The content validity index: are you sure you know what's being reported? Critique and recommendations. Res Nurs Health. 2006 Oct;29(5):489-97. doi: 10.1002/nur.20147.
PMID: 16977646BACKGROUNDRUBIO, D. M., BERG-WEGER, M., TEBB, S. S., LEE, E. S. & RAUCH, S. 2003. Objectifying content validity: Conducting a content validity study in social work research. Social Work Research, 27, 94-104.
BACKGROUNDShmueli A. Subjective health status and health values in the general population. Med Decis Making. 1999 Apr-Jun;19(2):122-7. doi: 10.1177/0272989X9901900202.
PMID: 10231074BACKGROUNDShmueli A. The Visual Analog rating Scale of health-related quality of life: an examination of end-digit preferences. Health Qual Life Outcomes. 2005 Nov 14;3:71. doi: 10.1186/1477-7525-3-71.
PMID: 16285884BACKGROUNDSim J, Wright CC. The kappa statistic in reliability studies: use, interpretation, and sample size requirements. Phys Ther. 2005 Mar;85(3):257-68.
PMID: 15733050BACKGROUNDSTREINER, D. L. & NORMAN, G. R. 1995. Health measurement scales: a practical guide to their development and use, New York, Oxford University Press.
BACKGROUNDTABACHNICK, B. G. & FIDELL, L. S. 1996. Using Multivariate Statistics New York, Harper & Row.
BACKGROUNDTORRANCE, G. W. 1978. Social preferences for health states: an empirical evaluation of three measurement techniques. Socio-Economic Planning Sci, 10, 129-138.
BACKGROUNDWassef W, Bova C, Barton B, Hartigan C. Pancreatitis Quality of Life Instrument: Development of a new instrument. SAGE Open Med. 2014 Feb 3;2:2050312114520856. doi: 10.1177/2050312114520856. eCollection 2014.
PMID: 26770703BACKGROUNDWEINMAN, J., WRIGHT, S. & JOHNSTON, M. 1995. Measures in health psychology: A user's portfolio. Windsor, UK: NFER-NELSON.
BACKGROUND
Study Officials
- PRINCIPAL INVESTIGATOR
Aimee Aubeeluck
Associate Professor
Central Study Contacts
Study Design
- Study Type
- observational
- Time Perspective
- CROSS SECTIONAL
- Sponsor Type
- OTHER
- Responsible Party
- SPONSOR
Study Record Dates
First Submitted
June 2, 2015
First Posted
June 4, 2015
Study Start
August 1, 2015
Primary Completion
February 1, 2016
Study Completion
February 1, 2016
Last Updated
December 3, 2015
Record last verified: 2015-12