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Retrospective and prospective data collection compared in the Dutch End of Life in Dementia (DEOLD) study

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Abstract
Studying end of life in dementia patients is challenging because of ill-defined prognoses and frequent inability to self-report. We aim to quantify and compare (1) feasibility and (2) sampling issues between prospective and retrospective data collection specific to end-of-life research in long-term care settings. The observational Dutch End of Life in Dementia study (DEOLD; 2007 to 2011) used both prospective data collection (28 facilities; 17 nursing home organizations/physician teams; questionnaires between January 2007 and July 2010, survival until July 2011) and retrospective data collection (exclusively after death; 6 facilities; 2 teams, questionnaires between November 2007 and March 2010). Prospective collection extended from the time of admission to the time after death or conclusion of the study. Prospectively, we recruited 372 families: 218 residents died (59%) and 184 (49%) had complete physician and family after-death assessments. Retrospectively, 119 decedents were enrolled, with 64 (54%) complete assessments. Cumulative data collection over all homes lasted 80 and 8 years, respectively. Per complete after-death assessments in a year, the prospective data collection involved 37.9 beds, whereas this was 7.9 for the retrospective data collection. Although age at death, sex, and survival curves were similar, prospectively, decedents' length of stay was shorter (10.3 vs. 31.4 mo), and fewer residents had advanced dementia (39% vs. 54%). Regarding feasibility, we conclude that prospective data collection is many fold more intensive and complex per complete after-death assessment. Regarding sampling, if not all are followed until death, it results in right censoring and in different, nonrepresentative samples of decedents compared with retrospective data collection. Future work may adjust or stratify for dementia severity and length of stay as key issues to promote comparability between studies.
Keywords
OLDER-PEOPLE, QUALITY, NURSING-HOME, LONG-TERM-CARE, dementia, follow-back, research design, palliative care, nursing homes, cohort studies, INSTRUMENTS, RESIDENTS, DESIGN, DECADE, DEATH

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MLA
van der Steen, Jenny T, Miel W Ribbe, Luc Deliens, et al. “Retrospective and Prospective Data Collection Compared in the Dutch End of Life in Dementia (DEOLD) Study.” ALZHEIMER DISEASE & ASSOCIATED DISORDERS 28.1 (2014): 88–94. Print.
APA
van der Steen, J. T., Ribbe, M. W., Deliens, L., Gutschow, G., & Onwuteaka-Philipsen, B. D. (2014). Retrospective and prospective data collection compared in the Dutch End of Life in Dementia (DEOLD) study. ALZHEIMER DISEASE & ASSOCIATED DISORDERS, 28(1), 88–94.
Chicago author-date
van der Steen, Jenny T, Miel W Ribbe, Luc Deliens, Giselka Gutschow, and Bregje D Onwuteaka-Philipsen. 2014. “Retrospective and Prospective Data Collection Compared in the Dutch End of Life in Dementia (DEOLD) Study.” Alzheimer Disease & Associated Disorders 28 (1): 88–94.
Chicago author-date (all authors)
van der Steen, Jenny T, Miel W Ribbe, Luc Deliens, Giselka Gutschow, and Bregje D Onwuteaka-Philipsen. 2014. “Retrospective and Prospective Data Collection Compared in the Dutch End of Life in Dementia (DEOLD) Study.” Alzheimer Disease & Associated Disorders 28 (1): 88–94.
Vancouver
1.
van der Steen JT, Ribbe MW, Deliens L, Gutschow G, Onwuteaka-Philipsen BD. Retrospective and prospective data collection compared in the Dutch End of Life in Dementia (DEOLD) study. ALZHEIMER DISEASE & ASSOCIATED DISORDERS. 2014;28(1):88–94.
IEEE
[1]
J. T. van der Steen, M. W. Ribbe, L. Deliens, G. Gutschow, and B. D. Onwuteaka-Philipsen, “Retrospective and prospective data collection compared in the Dutch End of Life in Dementia (DEOLD) study,” ALZHEIMER DISEASE & ASSOCIATED DISORDERS, vol. 28, no. 1, pp. 88–94, 2014.
@article{5769975,
  abstract     = {Studying end of life in dementia patients is challenging because of ill-defined prognoses and frequent inability to self-report. We aim to quantify and compare (1) feasibility and (2) sampling issues between prospective and retrospective data collection specific to end-of-life research in long-term care settings. The observational Dutch End of Life in Dementia study (DEOLD; 2007 to 2011) used both prospective data collection (28 facilities; 17 nursing home organizations/physician teams; questionnaires between January 2007 and July 2010, survival until July 2011) and retrospective data collection (exclusively after death; 6 facilities; 2 teams, questionnaires between November 2007 and March 2010). Prospective collection extended from the time of admission to the time after death or conclusion of the study. Prospectively, we recruited 372 families: 218 residents died (59%) and 184 (49%) had complete physician and family after-death assessments. Retrospectively, 119 decedents were enrolled, with 64 (54%) complete assessments. Cumulative data collection over all homes lasted 80 and 8 years, respectively. Per complete after-death assessments in a year, the prospective data collection involved 37.9 beds, whereas this was 7.9 for the retrospective data collection. Although age at death, sex, and survival curves were similar, prospectively, decedents' length of stay was shorter (10.3 vs. 31.4 mo), and fewer residents had advanced dementia (39% vs. 54%). Regarding feasibility, we conclude that prospective data collection is many fold more intensive and complex per complete after-death assessment. Regarding sampling, if not all are followed until death, it results in right censoring and in different, nonrepresentative samples of decedents compared with retrospective data collection. Future work may adjust or stratify for dementia severity and length of stay as key issues to promote comparability between studies.},
  author       = {van der Steen, Jenny T and Ribbe, Miel W and Deliens, Luc and Gutschow, Giselka and Onwuteaka-Philipsen, Bregje D},
  issn         = {0893-0341},
  journal      = {ALZHEIMER DISEASE & ASSOCIATED DISORDERS},
  keywords     = {OLDER-PEOPLE,QUALITY,NURSING-HOME,LONG-TERM-CARE,dementia,follow-back,research design,palliative care,nursing homes,cohort studies,INSTRUMENTS,RESIDENTS,DESIGN,DECADE,DEATH},
  language     = {eng},
  number       = {1},
  pages        = {88--94},
  title        = {Retrospective and prospective data collection compared in the Dutch End of Life in Dementia (DEOLD) study},
  url          = {http://dx.doi.org/10.1097/WAD.0b013e318293b380},
  volume       = {28},
  year         = {2014},
}

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