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Parkinson’s Disease Diagnosis, Perceptions, Awareness, and Care in Kenya, PACKs WP1 Prevalence of PD

KENYA, 2024
Health and Well-Being (HaW)
Dr Gershim Asikii, MD PhD, Dickens Samuel Aduda MPH, PhD
Last modified December 03, 2024 Page views 3135 Documentation in PDF Metadata DDI/XML JSON

Identification

IDNO
DDI-KEN-APHRC-PACKs-WP1-PrevalenceofPD-2024-v1.0
Title
Parkinson’s Disease Diagnosis, Perceptions, Awareness, and Care in Kenya, PACKs WP1 Prevalence of PD
Subtitle
PACKs WP1 Prevalence of PD
Country
Name Country code
KENYA KEN
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.

Version

Version Date
2024-10-18
Version Notes
N/A

Scope

Keywords
Keyword
N/A

Coverage

Geographic Coverage
National Coverage (Nairobi County,Kisumu County, Kakamega County,Nakuru Countyi, and Mombasa County )
Unit of Analysis
Household
Individuals
Universe
Older people aged 60+ years, Older people aged 60+ years attending neurology clinics and/or Adult clinics

Producers and sponsors

Authoring entity/Primary investigators
Agency Name Affiliation
Dr Gershim Asikii, MD PhD African Population and Health Research Center (APHRC)
Dickens Samuel Aduda MPH, PhD Jaramogi Oginga Odinga University of Science and Technology (JOOUST)
Producers
Name Affiliation Role
Razak M Gyasi MPhil, PhD, PD African Population and Health Research Center (APHRC) Co-Principal Investigators (Co-PIs)
Sylvia Muyingo MSc, PhD African Population and Health Research Center (APHRC) Co-Principal Investigators (Co-PIs)
Sharon Mugo RN, MSc African Population and Health Research Center (APHRC) Co-Principal Investigators (Co-PIs)
Charles Owuora Obonyo, PhD Kenya Medical Research Institute (KEMRI) Co-Principal Investigators (Co-PIs)
Muthoni Gichu, MB.ChB, MSc Ministry of Health (MOH) Co-Principal Investigators (Co-PIs)
Sylvester Orao African Population and Health Research Center (APHRC) Data documentation specialist
Funding Agency/Sponsor
Name Abbreviation
Michael J. Fox Foundation for Parkinson’s Disease Research (MJFF)
Other Identifications/Acknowledgments
Name Role
Benard Muok PhD Collaborator
Dr. Juza Huka, MMed Consultant Neurologists
Dr. Thomas Kwasa (MMed) Consultant Neurologists

Sampling

Sampling Procedure
Clinical Validation Procedure.
A 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)
recruited 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
cases 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
assessed by clinicians using best practices. The clinicians will be blind to the diagnoses made by the lay interviewer.

Inclusion and Exclusion criteria.
We 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
shall 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.


HouseHold Survey Procedure.
Pilot 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.

Methods 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%
(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
the 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%,
for 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 ±1 %. 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.

Table 1: Sample size scenarios for the survey of PD in Kenya
Precision (d) Expected population proportion (p)
1% 1.5% 2.% 3% 4%
1% 634 945 1255 1864 2458
2% 159 237 314 466 615

A 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
based 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
from 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.
Trained 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.
Deviations from the Sample Design
N/A
Response Rate
Clinical Validation :(133/200) 66.5 percent

Household Survey :(1274/1500) 84.9 percent
Weighting
N/A

Data Collection

Dates of Data Collection (YYYY/MM/DD)
Start date End date Cycle
2024-06-05 2024-08-12 Clinical Validation
2024-07-24 2024-09-15 Household Survey
Mode of data collection
Face-to-face [f2f]
Supervision
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.
Type of Research Instrument
Clinical Validation Questionnaire.
The 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.
The questionnaire collected data on Demographical background, medical history and data on the 6 PD screening questions

HouseHold survey Questionnaire.
The 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.
The 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.

Data Processing

Cleaning Operations
Data collection was done electronically using tablets, with spot checks for quality control conducted by field leadership
Other Processing
N/A

Data Appraisal

Estimates of Sampling Error
N/A

Data access

Contact
Name Email URI
African Population and Health Research Center datarequest@aphrc.org www.aphrcmicrodataportal.org
Conditions
APHRC data access condition

All non-APHRC staff seeking to use data generated at the Center must obtain written approval to use the data from the Director of Research.
This 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:

1.Data Ownership:
The 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.

2.Purpose:
The 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.

3.Respondent Identifiers:
The 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.

4.Confidentiality pledge:
The 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.

5.Reporting of errors or inconsistencies:
The 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.

6.Publications resulting from APHRC data:
The 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.
Citation requirement
Use of the dataset must be acknowledged using a citation which would include:
- the Identification of the Primary Investigator
- the title of the survey (including country, acronym and year of implementation)
- the survey reference number
- the source and date of download

Metadata production

Document ID
DDI-KEN-APHRC-PACKs-WP1-PrevalenceofPD-2024-v1.0
Producers
Name Abbreviation Role
African Population and Health Research Center APHRC Documentation of the DDI
Date of Production
2024-10-18
Document version
Version 1.0 (October 2024)