How do patients experience chronic kidney disease? A mixed-methods study among patients in Sweden
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| Název: | How do patients experience chronic kidney disease? A mixed-methods study among patients in Sweden |
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| Autoři: | Wolpert, Elisabeth Z., Norman, Sara, Eek, Daniel, Holmesson, Carina, Fernström, Anders |
| Zdroj: | Journal of Public Health. 32:2015-2025 |
| Témata: | Chronic kidney disease, Patient experience, Primary healthcare, Patient-reported outcomes, Qualitative interviews, Health-related quality of life |
| Popis: | BackgroundAdvanced chronic kidney disease (CKD) severely impacts patients lives. Nevertheless, little is known about patients own experiences of living with CKD in Sweden. The objective of this study was to describe the patients perspective on CKD-including diagnosis, treatment journey, and healthcare interactions-and how CKD impacts patients health-related quality of life (HRQoL) and work capacity.Subject and methodsA mixed-methods approach was used that incorporated (i) a quantitative online survey with study-specific questions and assessments of HRQoL and work impairment among 178 patients with CKD in Sweden, and (ii) 40 qualitative interviews to gain an in-depth understanding of the patient experience.ResultsHRQoL and work capacity were notably impacted by CKD and deteriorated with advancing disease stage. Patients experienced numerous symptoms long before diagnosis, but still found diagnosis unexpected. Fatigue was the most frequently reported symptom impacting all areas of patients lives. In the interviews, patients reported that they worried what their future life would be like, a dread of dialysis and organ transplantation, and how they implemented lifestyle changes to mitigate progression. In primary healthcare, patients struggled to have their symptoms taken seriously. Once referred to kidney specialists, patients were satisfied with healthcare. Patients wished they had been diagnosed sooner in their disease journey.ConclusionThese findings highlight an unmet need from the patients perspective in primary healthcare, driven primarily by lack of early CKD diagnosis. In Sweden, there is a need for increased education on CKD in primary care, and a need for increased availability of specialized kidney care. |
| Popis souboru: | electronic |
| Přístupová URL adresa: | https://urn.kb.se/resolve?urn=urn:nbn:se:liu:diva-196075 https://liu.diva-portal.org/smash/get/diva2:1779533/FULLTEXT01.pdf |
| Databáze: | SwePub |
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Nájsť tento článok vo Web of Science | Abstrakt: | BackgroundAdvanced chronic kidney disease (CKD) severely impacts patients lives. Nevertheless, little is known about patients own experiences of living with CKD in Sweden. The objective of this study was to describe the patients perspective on CKD-including diagnosis, treatment journey, and healthcare interactions-and how CKD impacts patients health-related quality of life (HRQoL) and work capacity.Subject and methodsA mixed-methods approach was used that incorporated (i) a quantitative online survey with study-specific questions and assessments of HRQoL and work impairment among 178 patients with CKD in Sweden, and (ii) 40 qualitative interviews to gain an in-depth understanding of the patient experience.ResultsHRQoL and work capacity were notably impacted by CKD and deteriorated with advancing disease stage. Patients experienced numerous symptoms long before diagnosis, but still found diagnosis unexpected. Fatigue was the most frequently reported symptom impacting all areas of patients lives. In the interviews, patients reported that they worried what their future life would be like, a dread of dialysis and organ transplantation, and how they implemented lifestyle changes to mitigate progression. In primary healthcare, patients struggled to have their symptoms taken seriously. Once referred to kidney specialists, patients were satisfied with healthcare. Patients wished they had been diagnosed sooner in their disease journey.ConclusionThese findings highlight an unmet need from the patients perspective in primary healthcare, driven primarily by lack of early CKD diagnosis. In Sweden, there is a need for increased education on CKD in primary care, and a need for increased availability of specialized kidney care. |
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| ISSN: | 21981833 16132238 |
| DOI: | 10.1007/s10389-023-01942-0 |