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Validation of an informant-reported web-based data collection to assess dementia symptoms.

Rockwood K, Zeng A, Leibman C, Mucha L, Mitnitski A - J. Med. Internet Res. (2012)

Bottom Line: In the 250 profilees (155, 62% women, mean age 77 years), increasing dependence was associated with a greater chance of institutionalization.For example, no one at the lowest levels of dependence (DS score < 5, n = 33) was in long-term care, compared with half (13/25) of the profilees at the highest levels of dependence (DS score > 12) being in institutions (χ(2)(4) = 27.9, P < .001).Even so, caution is needed to assure the validity of data collected online.

View Article: PubMed Central - HTML - PubMed

Affiliation: DGI Clinical Inc, Halifax, NS, Canada. KRockwood@dgiclinical.com

ABSTRACT

Background: The Web offers unprecedented access to the experience of people with dementia and their care partners, but data gathered online need to be validated to be useful.

Objective: To test the construct validity of an informant Web-based data collection to assess dementia symptoms in relation to the 15-point Dependence Scale (DS).

Methods: In an online survey posted on the DementiaGuide website, care partners of people with dementia built individualized profiles from the 60-item SymptomGuide and completed a questionnaire, which included the DS and a staging tool.

Results: In the 250 profilees (155, 62% women, mean age 77 years), increasing dependence was associated with a greater chance of institutionalization. For example, no one at the lowest levels of dependence (DS score < 5, n = 33) was in long-term care, compared with half (13/25) of the profilees at the highest levels of dependence (DS score > 12) being in institutions (χ(2)(4) = 27.9, P < .001). The Web-based DS was correlated with the number of symptoms: higher DS scores were associated with a higher stage of dementia (F > 50, P < .001).

Conclusion: In an online survey, the Web-based DS showed good construct validity, potentially demonstrating how the Web can be used to learn more about dementia progression and how it relates to symptoms experienced by patients across the course of dementing illnesses. Even so, caution is needed to assure the validity of data collected online.

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Related in: MedlinePlus

Mean number of dementia symptoms: instrumental activities of daily living (blue), activities of daily living (red), and behavioral and psychological symptoms (black). Given that only 5 people had a Dependance Scale score of 0 or 1, these states are combined here.
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figure2: Mean number of dementia symptoms: instrumental activities of daily living (blue), activities of daily living (red), and behavioral and psychological symptoms (black). Given that only 5 people had a Dependance Scale score of 0 or 1, these states are combined here.

Mentions: Profilees who experienced more symptoms tended to be more dependent in general (Figure 1). The number of the SymptomGuide symptoms and the DS score were highly correlated (r = .73, P < .001). Likewise, as the DS score increased, so did the number of instrumental and personal ADL symptoms and the number of BPSD (F4 = 76, F4 = 54, and F4 = 14, P < .001; Figure 2). Note that the personal ADL and BPSD types of symptoms were especially uncommon at DS scores <5. The mean number of targeted instrumental ADL symptoms increased from 1 at DS scores < 2 to 8 at DS scores > 10.


Validation of an informant-reported web-based data collection to assess dementia symptoms.

Rockwood K, Zeng A, Leibman C, Mucha L, Mitnitski A - J. Med. Internet Res. (2012)

Mean number of dementia symptoms: instrumental activities of daily living (blue), activities of daily living (red), and behavioral and psychological symptoms (black). Given that only 5 people had a Dependance Scale score of 0 or 1, these states are combined here.
© Copyright Policy - open-access
Related In: Results  -  Collection

License 1 - License 2
Show All Figures
getmorefigures.php?uid=PMC3376520&req=5

figure2: Mean number of dementia symptoms: instrumental activities of daily living (blue), activities of daily living (red), and behavioral and psychological symptoms (black). Given that only 5 people had a Dependance Scale score of 0 or 1, these states are combined here.
Mentions: Profilees who experienced more symptoms tended to be more dependent in general (Figure 1). The number of the SymptomGuide symptoms and the DS score were highly correlated (r = .73, P < .001). Likewise, as the DS score increased, so did the number of instrumental and personal ADL symptoms and the number of BPSD (F4 = 76, F4 = 54, and F4 = 14, P < .001; Figure 2). Note that the personal ADL and BPSD types of symptoms were especially uncommon at DS scores <5. The mean number of targeted instrumental ADL symptoms increased from 1 at DS scores < 2 to 8 at DS scores > 10.

Bottom Line: In the 250 profilees (155, 62% women, mean age 77 years), increasing dependence was associated with a greater chance of institutionalization.For example, no one at the lowest levels of dependence (DS score < 5, n = 33) was in long-term care, compared with half (13/25) of the profilees at the highest levels of dependence (DS score > 12) being in institutions (χ(2)(4) = 27.9, P < .001).Even so, caution is needed to assure the validity of data collected online.

View Article: PubMed Central - HTML - PubMed

Affiliation: DGI Clinical Inc, Halifax, NS, Canada. KRockwood@dgiclinical.com

ABSTRACT

Background: The Web offers unprecedented access to the experience of people with dementia and their care partners, but data gathered online need to be validated to be useful.

Objective: To test the construct validity of an informant Web-based data collection to assess dementia symptoms in relation to the 15-point Dependence Scale (DS).

Methods: In an online survey posted on the DementiaGuide website, care partners of people with dementia built individualized profiles from the 60-item SymptomGuide and completed a questionnaire, which included the DS and a staging tool.

Results: In the 250 profilees (155, 62% women, mean age 77 years), increasing dependence was associated with a greater chance of institutionalization. For example, no one at the lowest levels of dependence (DS score < 5, n = 33) was in long-term care, compared with half (13/25) of the profilees at the highest levels of dependence (DS score > 12) being in institutions (χ(2)(4) = 27.9, P < .001). The Web-based DS was correlated with the number of symptoms: higher DS scores were associated with a higher stage of dementia (F > 50, P < .001).

Conclusion: In an online survey, the Web-based DS showed good construct validity, potentially demonstrating how the Web can be used to learn more about dementia progression and how it relates to symptoms experienced by patients across the course of dementing illnesses. Even so, caution is needed to assure the validity of data collected online.

Show MeSH
Related in: MedlinePlus