Understanding the treatment burden of people with chronic conditions in Kenya: A cross-sectional analysis using the Patient Experience with Treatment and Self-Management (PETS) questionnaire

{"Background": "Non-communicable diseases (NCDs) are an increasingly important cause of morbidity and mortality in Kenya, accounting for almost a third of all deaths, a proportion projected to rise by over 50% in the next decade. Evidence from high-income countries suggests that high treatment burden can negatively affect adherence and quality of life, but similar work in low- and middle-income countries is only beginning. This study aimed to explore treatment and self-management burden among people with chronic conditions, particularly hypertension and/or diabetes, in Western Kenya using the Patient Experience with Treatment and Self-Management (PETS) instrument.", "Methods": "A cross-sectional survey was conducted within the Primary Health Integrated Care Project for Chronic Conditions (PIC4C) in Busia and Trans Nzoia counties. The PETS Questionnaire 60-item version (Vs. 2.0) was translated into Swahili using a rigorous seven-step process following FACIT methodology and tested with six patients via cognitive interviews. The survey included 12 multi-item and two single-item scales. Participants were randomly sampled from PIC4C facilities, stratified by location, level, chronic condition, gender, and age, targeting a 1:6:2 ratio for diabetes, hypertension, and both conditions. A total of 301 participants completed the interviewer-administered survey (150 in Busia, 151 in Trans Nzoia) between 1 December 2020 and 12 February 2021. Data were collected using computer-assisted personal interviewing (CAPI) in REDCap. All PETS scales were scored 0\u2013100 (higher = greater burden). Internal consistency was assessed using Cronbach's alpha. Analyses included descriptive statistics, independent samples t-tests, chi-square tests, and one-way ANOVA.", "Key Results": "The sample was 63% female with a mean age of 57 years (range 20\u201390). The highest treatment burdens were reported in medical and health care expenses (mean 63.0, SD 23.0), monitoring health (mean 48.9, SD 26.6), physical/mental exhaustion (mean 39.7, SD 21.0), diet (mean 58.3, SD 25.6), and exercise/physical therapy (mean 43.1, SD 25.8). Internal consistency was adequate for most domains (Cronbach's \u03b1 \u2265 0.70), except monitoring health (\u03b1 = 0.55), medical and health care expenses (\u03b1 = 0.69), and diet (\u03b1 = 0.67). Trans Nzoia respondents had significantly higher burden for medical information (36.9 vs 29.2, p = 0.002), medications (29.1 vs 18.7, p < 0.001), medical appointments (36.0 vs 27.6, p < 0.001), and difficulty with health services (39.0 vs 33.2, p = 0.015). Busia respondents had significantly higher burden for interpersonal challenges (29.3 vs 18.4, p < 0.001), medical expenses (67.3 vs 58.8, p = 0.001), role/social activity limitations (35.3 vs 28.9, p = 0.043), and diet (62.0 vs 54.6, p = 0.015). Younger respondents (<60 years) reported higher burden for medication side effects (p < 0.05), diet (p < 0.05), and medical appointments (p = 0.075). Those with no formal education or low income reported higher burden for diet and medical expenses. Respondents with health insurance reported lower burden for medical expenses (53.1, SD 25.7) compared to those without (66.3, SD 21.1). People with diabetes reported higher burden in all domains compared to those with other NCDs, with significantly higher burden for medical appointments, role/social activity limitations, bother with medication side effects, and diet.", "Clinical Implications": "This study provides the first documented application of the PETS in a lower middle-income country, demonstrating its transferability to the Kenyan context. The high treatment burden, particularly around medical expenses, monitoring health, and self-management exhaustion, highlights the need for financial protection mechanisms and integrated chronic care programmes. Younger patients, those with lower education and income, and people with diabetes may benefit from targeted support. The findings are directly relevant to Kenya's universal health coverage (UHC) rollout, emphasising that comprehensive NCD coverage must include support for monitoring and self-management to reduce treatment burden. Areas identified as especially burdensome\u2014such as transport to appointments and long waits\u2014could be addressed through outreach services, group medical visits, and tele-medicine approaches, which have been piloted in the region."}