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. 2023 Jan 24;8(4):764-774.
doi: 10.1016/j.ekir.2023.01.019. eCollection 2023 Apr.

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

Titilayo O Ilori  1 , Adaobi Solarin  2 , Mamven Manmak  3 , Yemi R Raji  4 , Rotimi Braimoh  5 , Edward Kwakyi  6 , Theophilus Umeizudike  7 , Titilope Ajepe  8 , Omotoso Bolanle  9 , Nanna Ripiye  3 , Ernestina Eduful  6 , Temitayo Adebile  1 , Chinwuba Ijeoma  10 , Amisu A Mumuni  7 , Jessica Chern  1 , Morenikeji Akinpelu  1 , Ifeoma Ulasi  10 , Fatiu Arogundade  9 , Babatunde L Salako  4 , Rasheed Gbadegesin  11 , Rulan S Parekh  12 , Josée Dupuis  13   14 , Christiana O Amira  5 , Dwomoa Adu  6 , Cheryl A M Anderson  15 , Akinlolu Ojo  16 , Sushrut S Waikar  1
Affiliations

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

Titilayo O Ilori et al. Kidney Int Rep. .

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.

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Figures

Figure 1
Figure 1
Schematic diagram of Screening and Enrollment into the diet, chronic kidney disease and apolipoproteinL1 (DCA) Study in the first 18 months of enrollment. Schematic diagram showing the number of eligible participants in the parent human, hereditary and health in Africa kidney disease study and how we arrived at the current participants eligible for enrollment (N = 1112) of these, 712 have been enrolled into the study. DCA, Diet, CKD, and Apolipoprotein L1 study.
Figure 2
Figure 2
Figure showing the enrollment for the diet, chronic kidney disease and apolipoprotein L1 (DCA) study from February 2021 to April 2022. As of April 2022, 712 individuals have been enrolled into the DCA study and completed 24-hour dietary recalls and 24-hour urine collections.
Figure 3
Figure 3
Various strategies employed for participant retention and engagement in the Diet, CKD and ApolipoproteinL1 (DCA) study. (a) Improved communication with participants. (b) Improved rapport between research staff and participants. (c) Making research visits more convenient for participants. (d) Prioritizing cultural sensitivity in dealing with populations. DCA, Diet, CKD, and Apolipoprotein L1 study.
Figure 4
Figure 4
Barriers and facilitators to enrollment and retention in the diet, and CKD and apolipoprotein L1 Study (themes from focus group discussion and key informant interviews). CKD, chronic kidney disease.
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