Updating vital status by tracking in the community among patients with epidemic Kaposi sarcoma who are lost to follow-up in sub-Saharan Africa

Aggrey Semeere, Esther Freeman, Megan Wenger, David Glidden, Mwebesa Bwana, Micheal Kanyesigye, Fredrick Chite Asirwa, Elyne Rotich, Naftali Busakhala, Emmanuel Oga, Elima Jedy-Agba, Vivian Kwaghe, Kenneth Iregbu, Clement Adebamowo, Antoine Jaquet, Francois Dabis, Sam Phiri, Julia Bohlius, Matthias Egger, Constantin YiannoutsosKara Wools-Kaloustian, Jeffrey Martin

Research output: Contribution to journalArticle

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Abstract

Background: Throughout most of sub-Saharan Africa (and, indeed, most resource-limited areas), lack of death registries prohibits linkage of cancer diagnoses and precludes the most expeditious approach to determining cancer survival. Instead, estimation of cancer survival often uses clinical records, which have some mortality data but are replete with patients who are lost to follow-up (LTFU), some of which may be caused by undocumented death. The end result is that accurate estimation of cancer survival is rarely performed. A prominent example of a common cancer in Africa for which survival data are needed but for which frequent LTFU has precluded accurate estimation is Kaposi sarcoma (KS). Methods: Using electronic records, we identified all newly diagnosed KS among HIV-infected adults at 33 primary care clinics in Kenya, Uganda, Nigeria, and Malawi from 2009 to 2012. We determined those patients who were apparently LTFU, defined as absent from clinic for ≥90 days at database closure and unknown to be dead or transferred. Using standardized protocols which included manual chart review, telephone calls, and physical tracking in the community, we attempted to update vital status amongst patients who were LTFU. Results: We identified 1222 patients with KS, of whom 440 were LTFU according to electronic records. Manual chart review revealed that 18 (4.1%) were classified as LFTU due to clerical error, leaving 422 as truly LTFU. Of these 422, we updated vital status in 78%; manual chart review was responsible for updating in 5.7%, telephone calls in 26%, and physical tracking in 46%. Among 378 patients who consented at clinic enrollment to be tracked if they became LTFU and who had sufficient geographic contact/locator information, we updated vital status in 88%. Duration of LTFU was not associated with success of tracking, but tracking success was better in Kenya than the other sites. Conclusion: It is feasible to update vital status in a large fraction of patients with HIV-associated KS in sub-Saharan Africa who have become LTFU from clinical care. This finding likely applies to other cancers as well. Updating vital status amongst lost patients paves the way towards accurate determination of cancer survival.

Original languageEnglish (US)
Article number611
JournalBMC Cancer
Volume17
Issue number1
DOIs
StatePublished - Sep 2 2017

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Africa South of the Sahara
Kaposi's Sarcoma
Lost to Follow-Up
Survival
Neoplasms
Kenya
Telephone
HIV
Malawi
Aftercare
Uganda
Nigeria
Registries
Primary Health Care
Databases
Mortality

Keywords

  • Cancer
  • HIV/AIDS
  • Kaposi sarcoma
  • Loss to follow-up
  • Mortality
  • Resource-limited settings
  • Sub-Saharan Africa
  • Survival
  • Tracing
  • Tracking
  • Updating vital status

ASJC Scopus subject areas

  • Oncology
  • Genetics
  • Cancer Research

Cite this

Updating vital status by tracking in the community among patients with epidemic Kaposi sarcoma who are lost to follow-up in sub-Saharan Africa. / Semeere, Aggrey; Freeman, Esther; Wenger, Megan; Glidden, David; Bwana, Mwebesa; Kanyesigye, Micheal; Asirwa, Fredrick Chite; Rotich, Elyne; Busakhala, Naftali; Oga, Emmanuel; Jedy-Agba, Elima; Kwaghe, Vivian; Iregbu, Kenneth; Adebamowo, Clement; Jaquet, Antoine; Dabis, Francois; Phiri, Sam; Bohlius, Julia; Egger, Matthias; Yiannoutsos, Constantin; Wools-Kaloustian, Kara; Martin, Jeffrey.

In: BMC Cancer, Vol. 17, No. 1, 611, 02.09.2017.

Research output: Contribution to journalArticle

Semeere, A, Freeman, E, Wenger, M, Glidden, D, Bwana, M, Kanyesigye, M, Asirwa, FC, Rotich, E, Busakhala, N, Oga, E, Jedy-Agba, E, Kwaghe, V, Iregbu, K, Adebamowo, C, Jaquet, A, Dabis, F, Phiri, S, Bohlius, J, Egger, M, Yiannoutsos, C, Wools-Kaloustian, K & Martin, J 2017, 'Updating vital status by tracking in the community among patients with epidemic Kaposi sarcoma who are lost to follow-up in sub-Saharan Africa', BMC Cancer, vol. 17, no. 1, 611. https://doi.org/10.1186/s12885-017-3549-1
Semeere, Aggrey ; Freeman, Esther ; Wenger, Megan ; Glidden, David ; Bwana, Mwebesa ; Kanyesigye, Micheal ; Asirwa, Fredrick Chite ; Rotich, Elyne ; Busakhala, Naftali ; Oga, Emmanuel ; Jedy-Agba, Elima ; Kwaghe, Vivian ; Iregbu, Kenneth ; Adebamowo, Clement ; Jaquet, Antoine ; Dabis, Francois ; Phiri, Sam ; Bohlius, Julia ; Egger, Matthias ; Yiannoutsos, Constantin ; Wools-Kaloustian, Kara ; Martin, Jeffrey. / Updating vital status by tracking in the community among patients with epidemic Kaposi sarcoma who are lost to follow-up in sub-Saharan Africa. In: BMC Cancer. 2017 ; Vol. 17, No. 1.
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T1 - Updating vital status by tracking in the community among patients with epidemic Kaposi sarcoma who are lost to follow-up in sub-Saharan Africa

AU - Semeere, Aggrey

AU - Freeman, Esther

AU - Wenger, Megan

AU - Glidden, David

AU - Bwana, Mwebesa

AU - Kanyesigye, Micheal

AU - Asirwa, Fredrick Chite

AU - Rotich, Elyne

AU - Busakhala, Naftali

AU - Oga, Emmanuel

AU - Jedy-Agba, Elima

AU - Kwaghe, Vivian

AU - Iregbu, Kenneth

AU - Adebamowo, Clement

AU - Jaquet, Antoine

AU - Dabis, Francois

AU - Phiri, Sam

AU - Bohlius, Julia

AU - Egger, Matthias

AU - Yiannoutsos, Constantin

AU - Wools-Kaloustian, Kara

AU - Martin, Jeffrey

PY - 2017/9/2

Y1 - 2017/9/2

N2 - Background: Throughout most of sub-Saharan Africa (and, indeed, most resource-limited areas), lack of death registries prohibits linkage of cancer diagnoses and precludes the most expeditious approach to determining cancer survival. Instead, estimation of cancer survival often uses clinical records, which have some mortality data but are replete with patients who are lost to follow-up (LTFU), some of which may be caused by undocumented death. The end result is that accurate estimation of cancer survival is rarely performed. A prominent example of a common cancer in Africa for which survival data are needed but for which frequent LTFU has precluded accurate estimation is Kaposi sarcoma (KS). Methods: Using electronic records, we identified all newly diagnosed KS among HIV-infected adults at 33 primary care clinics in Kenya, Uganda, Nigeria, and Malawi from 2009 to 2012. We determined those patients who were apparently LTFU, defined as absent from clinic for ≥90 days at database closure and unknown to be dead or transferred. Using standardized protocols which included manual chart review, telephone calls, and physical tracking in the community, we attempted to update vital status amongst patients who were LTFU. Results: We identified 1222 patients with KS, of whom 440 were LTFU according to electronic records. Manual chart review revealed that 18 (4.1%) were classified as LFTU due to clerical error, leaving 422 as truly LTFU. Of these 422, we updated vital status in 78%; manual chart review was responsible for updating in 5.7%, telephone calls in 26%, and physical tracking in 46%. Among 378 patients who consented at clinic enrollment to be tracked if they became LTFU and who had sufficient geographic contact/locator information, we updated vital status in 88%. Duration of LTFU was not associated with success of tracking, but tracking success was better in Kenya than the other sites. Conclusion: It is feasible to update vital status in a large fraction of patients with HIV-associated KS in sub-Saharan Africa who have become LTFU from clinical care. This finding likely applies to other cancers as well. Updating vital status amongst lost patients paves the way towards accurate determination of cancer survival.

AB - Background: Throughout most of sub-Saharan Africa (and, indeed, most resource-limited areas), lack of death registries prohibits linkage of cancer diagnoses and precludes the most expeditious approach to determining cancer survival. Instead, estimation of cancer survival often uses clinical records, which have some mortality data but are replete with patients who are lost to follow-up (LTFU), some of which may be caused by undocumented death. The end result is that accurate estimation of cancer survival is rarely performed. A prominent example of a common cancer in Africa for which survival data are needed but for which frequent LTFU has precluded accurate estimation is Kaposi sarcoma (KS). Methods: Using electronic records, we identified all newly diagnosed KS among HIV-infected adults at 33 primary care clinics in Kenya, Uganda, Nigeria, and Malawi from 2009 to 2012. We determined those patients who were apparently LTFU, defined as absent from clinic for ≥90 days at database closure and unknown to be dead or transferred. Using standardized protocols which included manual chart review, telephone calls, and physical tracking in the community, we attempted to update vital status amongst patients who were LTFU. Results: We identified 1222 patients with KS, of whom 440 were LTFU according to electronic records. Manual chart review revealed that 18 (4.1%) were classified as LFTU due to clerical error, leaving 422 as truly LTFU. Of these 422, we updated vital status in 78%; manual chart review was responsible for updating in 5.7%, telephone calls in 26%, and physical tracking in 46%. Among 378 patients who consented at clinic enrollment to be tracked if they became LTFU and who had sufficient geographic contact/locator information, we updated vital status in 88%. Duration of LTFU was not associated with success of tracking, but tracking success was better in Kenya than the other sites. Conclusion: It is feasible to update vital status in a large fraction of patients with HIV-associated KS in sub-Saharan Africa who have become LTFU from clinical care. This finding likely applies to other cancers as well. Updating vital status amongst lost patients paves the way towards accurate determination of cancer survival.

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KW - Loss to follow-up

KW - Mortality

KW - Resource-limited settings

KW - Sub-Saharan Africa

KW - Survival

KW - Tracing

KW - Tracking

KW - Updating vital status

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