Experiencing Loss and Planning Ahead Study (ELPAS)
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|ClinicalTrials.gov Identifier: NCT03332979|
Recruitment Status : Recruiting
First Posted : November 6, 2017
Last Update Posted : February 7, 2018
|Condition or disease|
Show Detailed Description
|Study Type :||Observational|
|Estimated Enrollment :||150 participants|
|Official Title:||Experiencing Loss and Planning Ahead Study (ELPAS): Caring for a Relative or Friend With Dementia|
|Actual Study Start Date :||January 11, 2018|
|Estimated Primary Completion Date :||February 1, 2019|
|Estimated Study Completion Date :||February 1, 2019|
- Pre-death grief in dementia caregiving [ Time Frame: Baseline ]Marwit-Meuser Caregiver Grief Inventory Short Form (MMCGI-SF) (Marwit and Meuser 2005). 18 items with a score range from 18-90. Higher scores indicate higher levels of grief from carers of people with dementia. There are also 3 subscales that will be used for exploratory analysis; 'Personal Sacrifice and Burden', 'Heartfelt Sadness and Longing' and 'Worry and Felt Isolation'. Each subscale has 6 items with a score range from 6-30 and higher scores indicating a poorer outcome for each subscale.
- Knowledge of how dementia progresses [ Time Frame: Baseline ]Dementia Knowledge Assessment Scale (Annear, Toye et al. 2015). Possible score range 0-50 with a higher score indicating better knowledge of dementia.
- Knowledge of the person with dementia's end of life preferences [ Time Frame: Baseline ]Two categorical questions will be used: 'Have you had discussions with the person with dementia regarding their wishes at the end of life? (yes/no). Do you feel you have a good understanding of their wishes for end of life care? (yes/not sure/no).
- Advance decisions in place for person with dementia [ Time Frame: Baseline ]Binary variable - either have or do not have any form of advance plan (such as Power of Attorney, Advance decisions to refuse treatment, Do Not attempt Resuscitation, Advance Care plan) in place for the person with dementia.
- Communication with healthcare providers [ Time Frame: Baseline ]Health Literacy Questionnaire (Osborne et al. 2013). Three subscales: subscale 1 'Feeling understood and supported by healthcare providers'. Average score of 4 items leading to a range of 1-4 with higher scores indicating that the person 'has an established relationship with at least one healthcare provider who knows them well and who they trust to provide useful advice and information'. Subscale 2 'Having sufficient information to manage my health' has 4 items, range 1-4 with higher score indicating person 'feels confident that they have all the information that they need to live with and manage their condition and to make decisions.' Subscale 6 'Ability to actively engage with healthcare providers'. 5 items, score range 1-5, higher scores indicating person is 'proactive about their health and feels in control in relationships with healthcare providers. Is able to seek advice from additional health care providers when necessary…Empowered.'
- Social Support for Health subcale of the Health Literacy Questionnaire [ Time Frame: Baseline ]Health Literacy Questionnaire (Osborne, Batterham et al. 2013) Sub-scale examines satisfaction with support for health from social network. Score is calculated as an average of the 5 items of the subscale leading to a score range of 1-4 with higher scores indicating that a person's social system provides them with all the support they want or need.
- Dementia Severity [ Time Frame: Baseline ]Carer report of their relative/friend's severity of dementia using the Clinical Dementia Rating scale (Morris 1993). This scale leads to scores 5 possible scores; 0=no dementia, 0.5=questionable dementia, 1=mild dementia, 2=moderate dementia and 3=severe dementia.
- Intrinsic religiosity [ Time Frame: Baseline ]Duke University Religion Index (Koenig and Büssing 2010). Using the subscale 'Intrinsic religiosity' which assesses degree of personal religious commitment or motivation which has been more strongly associated with protecting from psychological distress. Possible score range is 0-12 with a higher score indicating a stronger personal religious commitment/motivation.
To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.
Please refer to this study by its ClinicalTrials.gov identifier (NCT number): NCT03332979
|Contact: Kirsten J Moore, PhD||+44(0)firstname.lastname@example.org|
|Contact: Yana Kitova, BA||+44(0)email@example.com|
|University College London||Recruiting|
|London, United Kingdom, W1T 7NF|
|Contact: Kirsten J Moore, BA(Hons) PhD +44(0)2076799488 ext 99488 firstname.lastname@example.org|
|Contact: Sophie Crawley, BSc +44(0)20 3108 6663 ext 56663 email@example.com|
|Principal Investigator:||Kirsten J Moore, PhD||University College, London|