Pathways to Care for Patients With Severe Chronic NCDs: A Cross-Sectional Survey of Inpatients in Neno Malawi.
Severe chronic non-communicable diseases (NCDs) place a significant burden on low- and middle-income countries (LMICs), where overburdened and underprepared health systems lead to misdiagnosis, treatment delays and poor outcomes. While prior research has examined health system gaps, little is known about patient experiences navigating care. This study examines the experiences of inpatients living with severe chronic NCDs in Neno District, Malawi, identifying triggers for care, mapping pathways to diagnosis and patient experience navigating care.
We conducted a cross-sectional study among inpatients admitted for severe chronic NCDs at two rural hospitals. Participants were asked about their journey to diagnosis, associated costs of illness and treatment, barriers encountered along their journey, decisions around seeking care and termination of care. Data collection included clinical record reviews and structured surveys documenting patient demographics and detailed clinical timelines (symptoms and careseeking) and costs, followed by open-ended fieldnotes capturing patient narratives.
Fifty-two patients were recruited, representing 51% of eligible admissions over the study period. Ages ranged from 2 to 80 years (median: 43.5, IQR: 23.5-62). Diagnoses included heart disease, Type 1 and insulin-dependent Type 2 diabetes, kidney and liver disease, epilepsy and schizophrenia, with nearly half of patients admitted for cardiac conditions. Among paediatric patients, common conditions included congenital heart disease, sickle cell disease and epilepsy. One-third sought care within 3 days of recognizing symptoms, and 60% were admitted with new diagnoses. Time from symptom onset to diagnosis varied widely: Type 1 diabetes was diagnosed within 2 months of initial symptoms, and sickle cell disease often took years. Financial burdens were substantial; 77% of patients reported out-of-pocket costs, and 71% borrowed money for care.
Gaps in diagnostic tools and provider expertise contribute to delays in diagnosis and treatment, exacerbating health and financial burdens. Our findings emphasize the need to ensure ongoing patient engagement and to enhance providers' ability to recognize patients who would benefit from the services.
We conducted a cross-sectional study among inpatients admitted for severe chronic NCDs at two rural hospitals. Participants were asked about their journey to diagnosis, associated costs of illness and treatment, barriers encountered along their journey, decisions around seeking care and termination of care. Data collection included clinical record reviews and structured surveys documenting patient demographics and detailed clinical timelines (symptoms and careseeking) and costs, followed by open-ended fieldnotes capturing patient narratives.
Fifty-two patients were recruited, representing 51% of eligible admissions over the study period. Ages ranged from 2 to 80 years (median: 43.5, IQR: 23.5-62). Diagnoses included heart disease, Type 1 and insulin-dependent Type 2 diabetes, kidney and liver disease, epilepsy and schizophrenia, with nearly half of patients admitted for cardiac conditions. Among paediatric patients, common conditions included congenital heart disease, sickle cell disease and epilepsy. One-third sought care within 3 days of recognizing symptoms, and 60% were admitted with new diagnoses. Time from symptom onset to diagnosis varied widely: Type 1 diabetes was diagnosed within 2 months of initial symptoms, and sickle cell disease often took years. Financial burdens were substantial; 77% of patients reported out-of-pocket costs, and 71% borrowed money for care.
Gaps in diagnostic tools and provider expertise contribute to delays in diagnosis and treatment, exacerbating health and financial burdens. Our findings emphasize the need to ensure ongoing patient engagement and to enhance providers' ability to recognize patients who would benefit from the services.
Authors
Boudreaux Boudreaux, Mansoor Mansoor, Aron Aron, Boti Boti, Bukhman Bukhman, Chibvunde Chibvunde, Kanzoole Kanzoole, Kumwenda Kumwenda, Ndindi Ndindi, Sichali Sichali, Ruderman Ruderman, Thapa Thapa, Adler Adler, Wroe Wroe
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