{"doc_desc":{"title":"PACK's WP1 Documentation","idno":"DDI-KEN-APHRC-PACKs-WP1-PrevalenceofPD-2024-v1.0","producers":[{"name":"African Population and Health Research Center","abbreviation":"APHRC","affiliation":"","role":"Documentation of the DDI"}],"prod_date":"2024-10-18","version_statement":{"version":"Version 1.0 (October 2024)"}},"study_desc":{"title_statement":{"idno":"DDI-KEN-APHRC-PACKs-WP1-PrevalenceofPD-2024-v1.0","title":"Parkinson\u2019s Disease Diagnosis, Perceptions, Awareness, and Care in Kenya","sub_title":"PACKs WP1 Prevalence of PD","alt_title":"PACKs WP1 Prevalence of PD"},"authoring_entity":[{"name":"Dr Gershim Asikii, MD PhD","affiliation":"African Population and Health Research Center (APHRC) "},{"name":"Dickens Samuel Aduda MPH, PhD","affiliation":"Jaramogi Oginga Odinga University of Science and Technology (JOOUST) "}],"oth_id":[{"name":"Benard Muok PhD","affiliation":"","email":"","role":"Collaborator "},{"name":"Dr. Juza Huka, MMed","affiliation":"","email":"","role":"Consultant Neurologists "},{"name":"Dr. Thomas Kwasa (MMed)","affiliation":"","email":"","role":"Consultant Neurologists "}],"production_statement":{"producers":[{"name":"Razak M Gyasi MPhil, PhD, PD","affiliation":"African Population and Health Research Center (APHRC) ","role":"Co-Principal Investigators (Co-PIs) "},{"name":"Sylvia Muyingo MSc, PhD","affiliation":"African Population and Health Research Center (APHRC) ","role":"Co-Principal Investigators (Co-PIs) "},{"name":"Sharon Mugo  RN,  MSc","affiliation":"African Population and Health Research Center (APHRC) ","role":"Co-Principal Investigators (Co-PIs) "},{"name":"Charles Owuora Obonyo, PhD","affiliation":"Kenya Medical Research Institute (KEMRI)   ","role":"Co-Principal Investigators (Co-PIs) "},{"name":"Muthoni Gichu, MB.ChB, MSc","affiliation":"Ministry of Health (MOH)","role":"Co-Principal Investigators (Co-PIs) "},{"name":"Sylvester Orao","affiliation":"African Population and Health Research Center (APHRC) ","role":"Data documentation specialist"}],"copyright":"Copyright \u00a9 APHRC, 2024","funding_agencies":[{"name":"Michael J. Fox Foundation for Parkinson\u2019s Disease Research","abbreviation":"(MJFF)","role":""}],"grant_no":"MJFF-020959"},"series_statement":{"series_name":"Demographic and Health Survey [hh\/dhs]","series_info":"This work package involved  a population-level survey which was the first stage of a two-stage process to identify participants with PD in Kenya. A cross-sectional survey representative of ethnolinguistic regions in Kenya was conducted among older people. This work package involved three key components which were; First,Clinical Validation of Screening tool for PD, which aimed at providing essential information on the accuracy of this tool in diagnosing PD in Kenya. Secondly, It performed a cross-sectional and representative survey of older people in Kenya to estimate the prevalence of PD among older people in Kenya, and Lastly, it performed a Qualitative study with community health advisors, will employ a qualitative approach to assess the knowledge and practices of influential people regarding PD."},"version_statement":{"version_date":"2024-10-18","version_notes":"N\/A"},"study_info":{"keywords":[{"keyword":"N\/A","vocab":"","uri":""}],"abstract":"Parkinson's disease (PD) is one of the major neurodegenerative conditions in sub-Saharan Africa (SSA), particularly among aging adults. However, little is known about the epidemiology, service availability, and population-level awareness of PD due to the weak capacity of the primary health care system and PD-related poor knowledge in the SSA setting. There is an apparent lack of data on PD in SSA, including Kenya. This study aims to 1) validate tools for screening, estimate the prevalence of PD at the population level, and assess the knowledge and attitudes of influential community advisors; 2) assess the healthcare service availability and readiness to manage PD, and 3) estimate patient caseloads in neurology clinics and identify barriers and facilitators to diagnosis and referral along the care cascade. The Work package (WP) will employ a concurrent mixed-methods approach, including household surveys nested within APHRC-led Hewlettplanned national surveys among older people in Kenya (n=1500). We will conduct in-depth interviews (n=40) with community health advisors, including traditional healers, community health volunteers, and medicine sellers. WP2 will assess service availability and readiness in three tertiary hospitals, one each from Nairobi and Siaya, and a sample of primary care facilities in Kisumu (n=50) using a systems assessment tool customized for PD. WP3 will estimate patient caseloads in 3 neurology clinics of the selected tertiary hospitals in WP2 and conduct in-depth interviews with PD patient-caregiver dyads (n=45). Focus group discussions (n=3) with patient support groups and caregivers will be conducted. The findings are expected to inform and support community education programs, the development of care models, capacity-building programs for healthcare workers, and policy decisions for improving PD care in SSA.","coll_dates":[{"start":"2024-06-05","end":"2024-08-12","cycle":"Clinical Validation"},{"start":"2024-07-24","end":"2024-09-15","cycle":"Household Survey"}],"nation":[{"name":"KENYA","abbreviation":"KEN"}],"geog_coverage":"National Coverage (Nairobi County,Kisumu County, Kakamega County,Nakuru Countyi, and Mombasa County )","analysis_unit":"Household\nIndividuals","universe":"Older people aged 60+ years, Older people aged 60+ years attending neurology clinics and\/or Adult clinics","notes":"Clinical Validation\n- Background      \n- Medical History\n- Screening questions\n\nHousehold Survey\n- Socio-Demographics\n- Socio-Economic factors\n- Medical History\n- Parkinson's disease screening tool\n- PDQ-39 QUESTIONNAIRE  \n- HEALTH-RELATED QUALITY OF LIFE - HRQOL\n- LUBBEN SOCIAL NETWORK SCALE - 6 Item Version \n- ANTHROPOMERY MEASURE","study_scope":"Clinical Validation\n- Background      \n- Medical History\n- Screening questions\n\nHousehold Survey\n- Socio-Demographics\n- Socio-Economic factors\n- Medical History\n- Parkinson's disease screening tool\n- PDQ-39 QUESTIONNAIRE  \n- HEALTH-RELATED QUALITY OF LIFE - HRQOL\n- LUBBEN SOCIAL NETWORK SCALE - 6 Item Version \n- ANTHROPOMERY MEASURE"},"method":{"data_collection":{"sampling_procedure":"Clinical Validation Procedure.\nA sample comprising 120 older people (with an approximately equal number of females and males) aged 60+ years, broken down into PD Cases (n = 100 people with PD) \nrecruited from neurology clinics in hospitals and Healthy Controls (n = 20 older people recruited from adult clinics with no history of PD). In the validation process, first, all 120 participants (PD \ncases and Health Controls) will be interviewed by the lay interviewer who will administer the PDSQ. Second, within 2-4 weeks following the PDSQ interview, all 120 participants will be \nassessed by clinicians using best practices. The clinicians will be blind to the diagnoses made by the lay interviewer. \n\nInclusion and Exclusion criteria. \nWe shall include 60 + years old persons with 100 PD cases and 20 healthy controls these are persons reviewed by a neurologist and confirmed to have no PD. All persons who have consented \nshall be included in the study. We shall exclude all persons who have not consented to the study, bedridden patients, or inability to communicate and also persons with secondary diagnosed PD. \n\n\nHouseHold Survey Procedure.\nPilot study : prior to the main survey, a pilot study was conducted among 50 older people to check the performance of the survey instruments, including the length of the interviews, and the understanding of the different questions by the respondents. Specifically, the pilot aimed at 1) testing and familiarizing the design of the instruments 2) evaluating the feasibility of the study in urban settings 3) affirming the validity and reliability of the instruments, and 4) familiarizing the data collection staff with the questionnaires and procedures. Each fieldworker or research assistant conducted pilot interviews in one purposively selected household in the study areas. Data generated from the pilot was used to improve the instruments and processes for the main study.\n\nMethods and sampling: Based on studies the prevalence of PD among older people in sub Saharan Africa, is estimated at 285\/100,000 over 2 years, which translates into a prevalence of ~1% \n(Okubadejo et al. 2006). For cross-sectional surveys to estimate anticipated population prevalence\/proportion p with a specified absolute precision d, the sample size is computed using \nthe Cochrane formula (Cochrane, 1977) Table 1 presents the minimum sample total sizes required at each site to estimate expected population proportion at a level of significance of 5%, \nfor the different levels of absolute precision assuming a non-response rate of 10% and design effect of 1.5. A sample size of 1500 will enable us to determine this prevalence with a precision of \u00b11 %. Assuming equal groups of men and women, the sample size of 1500 allows us to detect a difference of 3% between groups with 90% power. \n\nTable 1: Sample size scenarios for the survey of PD in Kenya \nPrecision (d) \t\tExpected population proportion (p) \t\t\n\t1% \t1.5% \t2.% \t3% \t4% \t\n1% \t634 \t945 \t1255 \t1864 \t2458 \t\n2% \t159 \t237 \t314 \t466 \t615 \t\n \nA three-stage sampling was applied. First, Kenya was stratified into five ethnolinguistic regions which were purposively selected, then from each region, one county was purposively selected \nbased on the estimated number of older people and logistical considerations (access and existing networks). In each of the selected counties enumeration areas (villages) was randomly selected \nfrom urban and rural locations with probability proportional to size. All households listed with older people (age 60+ years) were approached for an interview in each enumeration area. \nTrained interviewers will administered the validated PDSQ to the older people identified in the selected households. In this regard, five counties were selected: Kisumu, Kakamega, Nakuru, Nairobi, and Mombasa.","sampling_deviation":"N\/A","coll_mode":"Face-to-face [f2f]","research_instrument":"Clinical Validation Questionnaire.\nThe PDSQ (Parkinson's disease screening questionnaire) was translated into kiswahili and the participant were interviewed using the english or kiswahili version, according to their language prederence. The data collection was conducted by trained and experienced personnel.\nThe questionnaire collected data on Demographical background, medical history and data on the 6 PD screening questions\n\nHouseHold survey Questionnaire.\nThe Household questionnaires was translated into kiswahili and the participants were interviewed using the english or kiswahili version, according to their language prederence. The data collection was conducted by trained and experienced personnel.\nThe questionnaire collected data on Socio-Demographics,Socio-Economic factors,Medical History,Parkinson's disease screening tool,PDQ-39 questionnaire,health-related quality of life -HRQOL,lubben social network scale- 6 item version and anthropometry measures.","act_min":"The project was managed by regular weekly project team meetings,virtual meetings with external investigators and weekly virtual meetings with the field lay interviewers , with regular email communication to raise and address any emerging challenges .This model of governance has been used by other  investigators in several projects  and has proven to be effective. The virtual meetings were supplemented with regular field visits by the local investigators especially at the initiatin of the data collection process.","weight":"N\/A","cleaning_operations":"Data collection was done electronically using tablets, with spot checks for quality control conducted by field leadership","method_notes":"N\/A"},"analysis_info":{"response_rate":"Clinical Validation :(133\/200) 66.5 percent\n\nHousehold Survey :(1274\/1500) 84.9 percent","sampling_error_estimates":"N\/A"}},"data_access":{"dataset_use":{"contact":[{"name":"African Population and Health Research Center","affiliation":"","email":"datarequest@aphrc.org","uri":"www.aphrcmicrodataportal.org"}],"cit_req":"Use of the dataset must be acknowledged using a citation which would include:\n- the Identification of the Primary Investigator\n- the title of the survey (including country, acronym and year of implementation)\n- the survey reference number\n- the source and date of download","conditions":"APHRC data access condition\n\nAll non-APHRC staff seeking to use data generated at the Center must obtain written approval to use the data from the Director of Research.\nThis form is developed to assess applications for data use and facilitate responsible sharing of data with external partners\/collaborators\/researchers. By entering into this agreement, the undersigned agrees to use these data only for the purpose for which they were obtained and to abide by the conditions outlined below:\n\n1.Data Ownership:\nThe data remain the property of APHRC; any unauthorized reproduction and sharing of the data is strictly prohibited. The user will, therefore, not release nor permit others to use or release the data to any other person without the written authorization from the Center.\n\n2.Purpose:\nThe provided data must be used for the purpose specified in the Data Request Form; any other use not specified in the form must receive additional or separate authorization.\n\n3.Respondent Identifiers:\nThe Center is committed to protecting the identity of the respondents who provide information in its research. All analytical data sets (both qualitative and quantitative) released by the Data Unit MUST are stripped of respondent identifiers to protect the identity of the respondents. By accepting to use APHRC data, the user is pledging that he\/she will not, under any circumstance, regenerate the identifiers or permit others to use the data to learn the identity of any individual, household or community included in any data set.\n\n4.Confidentiality pledge:\nThe user will not use nor permit others to use the data to report any information in the data sets that could identify, directly or by inference, individuals or households.\n\n5.Reporting of errors or inconsistencies:\nThe user will promptly notify the Head of the Statistics and Survey Unit any errors discovered in the data as soon as the errors are discovered.\n\n6.Publications resulting from APHRC data:\nThe Center requires external collaborators to work with APHRC staff on all publications resulting from its data. In order to facilitate this, lead authors should send a detailed concept note of the paper (including the background, rationale, data, analytical methods, and preliminary findings) to the Principle Investigator (or Theme Leader) for the project (with a copy to the Director of Research), who will circulate the abstract to concerned researchers for possible expression of interest in participating in the publication as co-authors. Any exception to the involvement of APHRC staff should be approved by the Director of Research, APHRC.","disclaimer":"The user of the data acknowledges that the original collector of the data, the authorized distributor of the data, and the relevant funding agency bear no responsibility for use of the data or for interpretations or inferences based upon such uses."}}}}