Rationale and Design of the Diet, CKD, and Apolipoprotein L1 Study in Low-Income and Middle-Income Countries
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 a...
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Published in | Kidney international reports Vol. 8; no. 4; pp. 764 - 774 |
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Main Authors | , , , , , , , , , , , , , , , , , , , , , , , , , , |
Format | Journal Article |
Language | English |
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Elsevier Inc
01.04.2023
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Abstract | 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.
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.
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.
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.
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AbstractList | IntroductionDiet, 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.MethodsThe 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.ResultsA 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.ConclusionAdopting 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. 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. 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. 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. 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. [Display omitted] Diet, chronic kidney disease (CKD), and Apolipoprotein L1 ( ) (DCA) Study is examining the role of dietary factors in CKD progression and 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. 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. 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. 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. |
Author | Amira, Christiana O. Braimoh, Rotimi Adebile, Temitayo Akinpelu, Morenikeji Ripiye, Nanna Ulasi, Ifeoma Waikar, Sushrut S. Ijeoma, Chinwuba Eduful, Ernestina Mumuni, Amisu A. Chern, Jessica Anderson, Cheryl A.M. Umeizudike, Theophilus Raji, Yemi R. Ilori, Titilayo O. Adu, Dwomoa Parekh, Rulan S. Bolanle, Omotoso Solarin, Adaobi Ojo, Akinlolu Arogundade, Fatiu Gbadegesin, Rasheed Kwakyi, Edward Dupuis, Josée Ajepe, Titilope Salako, Babatunde L. Manmak, Mamven |
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Edward organization: Department of Medicine and Therapeutics, University of Ghana Medical School, University of Ghana, Ghana – sequence: 7 givenname: Theophilus surname: Umeizudike fullname: Umeizudike, Theophilus organization: Department of Medicine, College of Medicine, Lagos State University, Nigeria – sequence: 8 givenname: Titilope surname: Ajepe fullname: Ajepe, Titilope organization: Department of Physiotherapy, College of Medicine, University of Lagos, Nigeria – sequence: 9 givenname: Omotoso surname: Bolanle fullname: Bolanle, Omotoso organization: Department of Medicine, Obafemi Awolowo University, Ile-Ife, Nigeria – sequence: 10 givenname: Nanna surname: Ripiye fullname: Ripiye, Nanna organization: Department of Internal Medicine, University of Abuja, Nigeria – sequence: 11 givenname: Ernestina surname: Eduful fullname: Eduful, Ernestina organization: Department of Medicine and Therapeutics, University of Ghana Medical School, University of Ghana, Ghana – sequence: 12 givenname: Temitayo surname: Adebile fullname: Adebile, Temitayo organization: Division of Nephrology, Department of Medicine, Boston Medical Center, Boston University School of Medicine Boston, Massachusetts, USA – sequence: 13 givenname: Chinwuba surname: Ijeoma fullname: Ijeoma, Chinwuba organization: University of Nigeria, Nsukka, Nigeria – sequence: 14 givenname: Amisu A. surname: Mumuni fullname: Mumuni, Amisu A. organization: Department of Medicine, College of Medicine, Lagos State University, Nigeria – sequence: 15 givenname: Jessica surname: Chern fullname: Chern, Jessica organization: Division of Nephrology, Department of Medicine, Boston Medical Center, Boston University School of Medicine Boston, Massachusetts, USA – sequence: 16 givenname: Morenikeji surname: Akinpelu fullname: Akinpelu, Morenikeji organization: Division of Nephrology, Department of Medicine, Boston Medical Center, Boston University School of Medicine Boston, Massachusetts, USA – sequence: 17 givenname: Ifeoma surname: Ulasi fullname: Ulasi, Ifeoma organization: University of Nigeria, Nsukka, Nigeria – sequence: 18 givenname: Fatiu surname: Arogundade fullname: Arogundade, Fatiu organization: Department of Medicine, Obafemi Awolowo University, Ile-Ife, Nigeria – sequence: 19 givenname: Babatunde L. surname: Salako fullname: Salako, Babatunde L. organization: Department of Medicine, College of Medicine, University of Ibadan, Ibadan, Nigeria – sequence: 20 givenname: Rasheed surname: Gbadegesin fullname: Gbadegesin, Rasheed organization: Department of Pediatrics, Department of Medicine, Duke University School of Medicine, North Carolina, USA – sequence: 21 givenname: Rulan S. surname: Parekh fullname: Parekh, Rulan S. organization: Department of Medicine, Women’s College Hospital, Hospital for Sick Children and University of Toronto, Ontario, Canada – sequence: 22 givenname: Josée surname: Dupuis fullname: Dupuis, Josée organization: Department of Biostatistics, Boston University School of Public Health, Boston, Massachusetts, USA – sequence: 23 givenname: Christiana O. surname: Amira fullname: Amira, Christiana O. organization: Department of Medicine, College of Medicine, University of Lagos, Nigeria – sequence: 24 givenname: Dwomoa surname: Adu fullname: Adu, Dwomoa organization: Department of Medicine and Therapeutics, University of Ghana Medical School, University of Ghana, Ghana – sequence: 25 givenname: Cheryl A.M. surname: Anderson fullname: Anderson, Cheryl A.M. organization: Department of Family Medicine and Public Health, University of California San Diego, San Diego, California, USA – sequence: 26 givenname: Akinlolu surname: Ojo fullname: Ojo, Akinlolu organization: Department of Medicine, Kansas University Medical Center, The University of Kansas, Kansas, USA – sequence: 27 givenname: Sushrut S. surname: Waikar fullname: Waikar, Sushrut S. organization: Division of Nephrology, Department of Medicine, Boston Medical Center, Boston University School of Medicine Boston, Massachusetts, USA |
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Snippet | Diet, chronic kidney disease (CKD), and Apolipoprotein L1 (APOL1) (DCA) Study is examining the role of dietary factors in CKD progression and APOL1... Diet, chronic kidney disease (CKD), and Apolipoprotein L1 ( ) (DCA) Study is examining the role of dietary factors in CKD progression and nephropathy. We... IntroductionDiet, chronic kidney disease (CKD), and Apolipoprotein L1 (APOL1) (DCA) Study is examining the role of dietary factors in CKD progression and APOL1... |
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SubjectTerms | 24hr-urine potassium & sodium Africa Clinical Research engagement retention |
Title | Rationale and Design of the Diet, CKD, and Apolipoprotein L1 Study in Low-Income and Middle-Income Countries |
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