Rationale and Design of the Diet, CKD, and Apolipoprotein L1 Study in Low-Income and Middle-Income Countries

Titilayo O. Ilori; Adaobi Solarin; Mamven Manmak; Yemi R. Raji; Rotimi Braimoh; Edward Kwakyi; Theophilus Umeizudike; Titilope Ajepe; Omotoso Bolanle; Nanna Ripiye; Ernestina Eduful; Temitayo Adebile; Chinwuba Ijeoma; Amisu A. Mumuni; Jessica Chern; Morenikeji Akinpelu; Ifeoma Ulasi; Fatiu Arogundade; Babatunde L. Salako; Rasheed Gbadegesin; Rulan S. Parekh; Josée Dupuis; Christiana O. Amira; Dwomoa Adu; Cheryl A.M. Anderson; Akinlolu Ojo; Sushrut S. Waikar

doi:10.1016/j.ekir.2023.01.019

Rationale and Design of the Diet, CKD, and Apolipoprotein L1 Study in Low-Income and Middle-Income Countries

Titilayo O. Ilori, Adaobi Solarin, Mamven Manmak, Yemi R. Raji, Rotimi Braimoh, Edward Kwakyi, Theophilus Umeizudike, Titilope Ajepe, Omotoso Bolanle, Nanna Ripiye, Ernestina Eduful, Temitayo Adebile, Chinwuba Ijeoma, Amisu A. Mumuni, Jessica Chern, Morenikeji Akinpelu, Ifeoma Ulasi, Fatiu Arogundade, Babatunde L. Salako, Rasheed GbadegesinRulan S. Parekh, Josée Dupuis, Christiana O. Amira, Dwomoa Adu, Cheryl A.M. Anderson, Akinlolu Ojo, Sushrut S. Waikar

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Abstract

Introduction: Diet, chronic kidney disease (CKD), and Apolipoprotein L1 (APOL1) (DCA) Study is examining the role of dietary factors in CKD progression and APOL1 nephropathy. We describe enrollment and retention efforts and highlight facilitators and barriers to enrollment and operational challenges, as well as accommodations made in the study protocol. Methods: The DCA study is enrolling participants in 7 centers in West Africa. Participants who consented were invited to complete dietary recalls and 24-hour urine collections in year 1. We conducted focus groups and semistructured interviews among study personnel to identify facilitators and barriers to enrollment as well as retention and operational challenges in the execution of the study protocol. We analyzed emerging themes using content analyses. Results: A total of 712 participants were enrolled in 18 months with 1256 24-hour urine and 1260 dietary recalls. Barriers to enrollment were the following: (i) a lack of understanding of research, (ii) the burden of research visits, and (iii) incorporating cultural and traditional nuances when designing research protocols. Factors facilitating enrollment were the following: (i) designing convenient research visits, (ii) building rapport and increased communication between the research team and participants, and (iii) cultural sensitivity – adapting research protocols for the populations involved. Offering home visits, providing free dietary counseling, reducing the volume of study blood collection, and reducing the frequency of visits were some changes made in the study protocol that increased participant satisfaction. Conclusion: Adopting a participant-centered approach with accommodations in the protocol for cultural adaptability and incorporating participant feedback is vital for carrying out research in low-income and middle-income regions.

Original language	English
Pages (from-to)	764-774
Number of pages	11
Journal	Kidney International Reports
Volume	8
Issue number	4
Early online date	23 Jan 2023
DOIs	https://doi.org/10.1016/j.ekir.2023.01.019
Publication status	Published - Apr 2023
Externally published	Yes

Bibliographical note

ª 2023 International Society of Nephrology. Published by Elsevier Inc. This is an open access article under the CC BY NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/).

Funder

TI, BO, DA, EK, FA, RB, UO, TA, and YR receive funds from National Institute of Diabetes and Digestive and Kidney Diseases. AS, MM, and TU receive funds from National Institute of Diabetes and Digestive and Kidney Diseases and Human, Heredity and Health in Africa (H3Africa); Cohort and renewal studies. EE received funds for renal nutrition from Apetamin, Astymin, Astyfer, Neutrosec and Hapenz and consults for Sahel Health, Africa.We would like to thank Grace Mfon, Morenikeji Akinpelu, Jillian Wilson, Motunrayo Sholarin, Ajibola Olokode, Olaitan Bobade, Rosemary Mamudu, Portia Antwi, Daniel Ntow, Tunji Akobi, Ijeoma Nnoli, Chinyere Okwara, and the entire H3Africa kidney disease study Network for their invaluable contribution to this project. We would like to thank Jillian Wilson for her invaluable contribution to this work. We would also like to thank members of the ∗community advisory board for their efforts and contributions to this project. We would also like to acknowledge all the participants who participated in the DCA study and provided feedback to the study team. We would like to thank the community advisory board members for their input in this this study. Finally, we would like to acknowledge our funders, the NIDDK and Boston University School of Medicine. TI is funded by the National Institute of Diabetes and Digestive and Kidney Diseases K23DK119542 and the Department of Medicine, Boston Medical Center.

TI is funded by the National Institute of Diabetes and Digestive and Kidney Diseases K23DK119542 and the Department of Medicine, Boston Medical Center

Funding

TI, BO, DA, EK, FA, RB, UO, TA, and YR receive funds from National Institute of Diabetes and Digestive and Kidney Diseases. AS, MM, and TU receive funds from National Institute of Diabetes and Digestive and Kidney Diseases and Human, Heredity and Health in Africa (H3Africa); Cohort and renewal studies. EE received funds for renal nutrition from Apetamin, Astymin, Astyfer, Neutrosec and Hapenz and consults for Sahel Health, Africa.We would like to thank Grace Mfon, Morenikeji Akinpelu, Jillian Wilson, Motunrayo Sholarin, Ajibola Olokode, Olaitan Bobade, Rosemary Mamudu, Portia Antwi, Daniel Ntow, Tunji Akobi, Ijeoma Nnoli, Chinyere Okwara, and the entire H3Africa kidney disease study Network for their invaluable contribution to this project. We would like to thank Jillian Wilson for her invaluable contribution to this work. We would also like to thank members of the ∗community advisory board for their efforts and contributions to this project. We would also like to acknowledge all the participants who participated in the DCA study and provided feedback to the study team. We would like to thank the community advisory board members for their input in this this study. Finally, we would like to acknowledge our funders, the NIDDK and Boston University School of Medicine. TI is funded by the National Institute of Diabetes and Digestive and Kidney Diseases K23DK119542 and the Department of Medicine, Boston Medical Center. TI is funded by the National Institute of Diabetes and Digestive and Kidney Diseases K23DK119542 and the Department of Medicine, Boston Medical Center .

Funders	Funder number
National Institute of Diabetes and Digestive and Kidney Diseases	K23DK119542
Boston University
Boston Medical Center
Georgetown University

Keywords

24hr-urine potassium & sodium
Africa
engagement
retention

ASJC Scopus subject areas

Nephrology

Access to Document

10.1016/j.ekir.2023.01.019Licence: CC BY-NC-ND

Ajepe2023VoRFinal published version, 1.42 MBLicence: CC BY-NC-ND

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Ilori, T. O., Solarin, A., Manmak, M., Raji, Y. R., Braimoh, R., Kwakyi, E., Umeizudike, T., Ajepe, T., Bolanle, O., Ripiye, N., Eduful, E., Adebile, T., Ijeoma, C., Mumuni, A. A., Chern, J., Akinpelu, M., Ulasi, I., Arogundade, F., Salako, B. L., ... Waikar, S. S. (2023). Rationale and Design of the Diet, CKD, and Apolipoprotein L1 Study in Low-Income and Middle-Income Countries. Kidney International Reports, 8(4), 764-774. https://doi.org/10.1016/j.ekir.2023.01.019

Ilori, TO, Solarin, A, Manmak, M, Raji, YR, Braimoh, R, Kwakyi, E, Umeizudike, T, Ajepe, T, Bolanle, O, Ripiye, N, Eduful, E, Adebile, T, Ijeoma, C, Mumuni, AA, Chern, J, Akinpelu, M, Ulasi, I, Arogundade, F, Salako, BL, Gbadegesin, R, Parekh, RS, Dupuis, J, Amira, CO, Adu, D, Anderson, CAM, Ojo, A & Waikar, SS 2023, 'Rationale and Design of the Diet, CKD, and Apolipoprotein L1 Study in Low-Income and Middle-Income Countries', Kidney International Reports, vol. 8, no. 4, pp. 764-774. https://doi.org/10.1016/j.ekir.2023.01.019

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title = "Rationale and Design of the Diet, CKD, and Apolipoprotein L1 Study in Low-Income and Middle-Income Countries",

abstract = "Introduction: Diet, chronic kidney disease (CKD), and Apolipoprotein L1 (APOL1) (DCA) Study is examining the role of dietary factors in CKD progression and APOL1 nephropathy. We describe enrollment and retention efforts and highlight facilitators and barriers to enrollment and operational challenges, as well as accommodations made in the study protocol. Methods: The DCA study is enrolling participants in 7 centers in West Africa. Participants who consented were invited to complete dietary recalls and 24-hour urine collections in year 1. We conducted focus groups and semistructured interviews among study personnel to identify facilitators and barriers to enrollment as well as retention and operational challenges in the execution of the study protocol. We analyzed emerging themes using content analyses. Results: A total of 712 participants were enrolled in 18 months with 1256 24-hour urine and 1260 dietary recalls. Barriers to enrollment were the following: (i) a lack of understanding of research, (ii) the burden of research visits, and (iii) incorporating cultural and traditional nuances when designing research protocols. Factors facilitating enrollment were the following: (i) designing convenient research visits, (ii) building rapport and increased communication between the research team and participants, and (iii) cultural sensitivity – adapting research protocols for the populations involved. Offering home visits, providing free dietary counseling, reducing the volume of study blood collection, and reducing the frequency of visits were some changes made in the study protocol that increased participant satisfaction. Conclusion: Adopting a participant-centered approach with accommodations in the protocol for cultural adaptability and incorporating participant feedback is vital for carrying out research in low-income and middle-income regions.",

keywords = "24hr-urine potassium & sodium, Africa, engagement, retention",

author = "Ilori, {Titilayo O.} and Adaobi Solarin and Mamven Manmak and Raji, {Yemi R.} and Rotimi Braimoh and Edward Kwakyi and Theophilus Umeizudike and Titilope Ajepe and Omotoso Bolanle and Nanna Ripiye and Ernestina Eduful and Temitayo Adebile and Chinwuba Ijeoma and Mumuni, {Amisu A.} and Jessica Chern and Morenikeji Akinpelu and Ifeoma Ulasi and Fatiu Arogundade and Salako, {Babatunde L.} and Rasheed Gbadegesin and Parekh, {Rulan S.} and Jos{\'e}e Dupuis and Amira, {Christiana O.} and Dwomoa Adu and Anderson, {Cheryl A.M.} and Akinlolu Ojo and Waikar, {Sushrut S.}",

note = "ª 2023 International Society of Nephrology. Published by Elsevier Inc. This is an open access article under the CC BY NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/).",

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doi = "10.1016/j.ekir.2023.01.019",

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journal = "Kidney International Reports",

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T1 - Rationale and Design of the Diet, CKD, and Apolipoprotein L1 Study in Low-Income and Middle-Income Countries

AU - Ilori, Titilayo O.

AU - Solarin, Adaobi

AU - Manmak, Mamven

AU - Raji, Yemi R.

AU - Braimoh, Rotimi

AU - Kwakyi, Edward

AU - Umeizudike, Theophilus

AU - Ajepe, Titilope

AU - Bolanle, Omotoso

AU - Ripiye, Nanna

AU - Eduful, Ernestina

AU - Adebile, Temitayo

AU - Ijeoma, Chinwuba

AU - Mumuni, Amisu A.

AU - Chern, Jessica

AU - Akinpelu, Morenikeji

AU - Ulasi, Ifeoma

AU - Arogundade, Fatiu

AU - Salako, Babatunde L.

AU - Gbadegesin, Rasheed

AU - Parekh, Rulan S.

AU - Dupuis, Josée

AU - Amira, Christiana O.

AU - Adu, Dwomoa

AU - Anderson, Cheryl A.M.

AU - Ojo, Akinlolu

AU - Waikar, Sushrut S.

N1 - ª 2023 International Society of Nephrology. Published by Elsevier Inc. This is an open access article under the CC BY NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/).

PY - 2023/4

Y1 - 2023/4

N2 - Introduction: Diet, chronic kidney disease (CKD), and Apolipoprotein L1 (APOL1) (DCA) Study is examining the role of dietary factors in CKD progression and APOL1 nephropathy. We describe enrollment and retention efforts and highlight facilitators and barriers to enrollment and operational challenges, as well as accommodations made in the study protocol. Methods: The DCA study is enrolling participants in 7 centers in West Africa. Participants who consented were invited to complete dietary recalls and 24-hour urine collections in year 1. We conducted focus groups and semistructured interviews among study personnel to identify facilitators and barriers to enrollment as well as retention and operational challenges in the execution of the study protocol. We analyzed emerging themes using content analyses. Results: A total of 712 participants were enrolled in 18 months with 1256 24-hour urine and 1260 dietary recalls. Barriers to enrollment were the following: (i) a lack of understanding of research, (ii) the burden of research visits, and (iii) incorporating cultural and traditional nuances when designing research protocols. Factors facilitating enrollment were the following: (i) designing convenient research visits, (ii) building rapport and increased communication between the research team and participants, and (iii) cultural sensitivity – adapting research protocols for the populations involved. Offering home visits, providing free dietary counseling, reducing the volume of study blood collection, and reducing the frequency of visits were some changes made in the study protocol that increased participant satisfaction. Conclusion: Adopting a participant-centered approach with accommodations in the protocol for cultural adaptability and incorporating participant feedback is vital for carrying out research in low-income and middle-income regions.

AB - Introduction: Diet, chronic kidney disease (CKD), and Apolipoprotein L1 (APOL1) (DCA) Study is examining the role of dietary factors in CKD progression and APOL1 nephropathy. We describe enrollment and retention efforts and highlight facilitators and barriers to enrollment and operational challenges, as well as accommodations made in the study protocol. Methods: The DCA study is enrolling participants in 7 centers in West Africa. Participants who consented were invited to complete dietary recalls and 24-hour urine collections in year 1. We conducted focus groups and semistructured interviews among study personnel to identify facilitators and barriers to enrollment as well as retention and operational challenges in the execution of the study protocol. We analyzed emerging themes using content analyses. Results: A total of 712 participants were enrolled in 18 months with 1256 24-hour urine and 1260 dietary recalls. Barriers to enrollment were the following: (i) a lack of understanding of research, (ii) the burden of research visits, and (iii) incorporating cultural and traditional nuances when designing research protocols. Factors facilitating enrollment were the following: (i) designing convenient research visits, (ii) building rapport and increased communication between the research team and participants, and (iii) cultural sensitivity – adapting research protocols for the populations involved. Offering home visits, providing free dietary counseling, reducing the volume of study blood collection, and reducing the frequency of visits were some changes made in the study protocol that increased participant satisfaction. Conclusion: Adopting a participant-centered approach with accommodations in the protocol for cultural adaptability and incorporating participant feedback is vital for carrying out research in low-income and middle-income regions.

KW - 24hr-urine potassium & sodium

KW - Africa

KW - engagement

KW - retention

UR - http://dx.doi.org/10.1016/j.ekir.2023.01.019

U2 - 10.1016/j.ekir.2023.01.019

DO - 10.1016/j.ekir.2023.01.019

M3 - Article

SN - 2468-0249

VL - 8

SP - 764

EP - 774

JO - Kidney International Reports

JF - Kidney International Reports

IS - 4

ER -

Rationale and Design of the Diet, CKD, and Apolipoprotein L1 Study in Low-Income and Middle-Income Countries

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ASJC Scopus subject areas

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