Health-Related Quality Of Life (Hrqol) Measures In Autosomal Dominant Polycystic Kidney Disease (Adpkd)

Abstract

Objectives: The prevalence of urinary incontinence (UI) in women in Slovakia is about 240 000 cases and has an increasing trend. Only 5 % of them were diagnosed by visiting urology or gynecology outpatient department. The objective of this paper was to find out the level of QoL in women with UI in Slovakia. MethOds: The primary method used for the analysis of QoL was the combined questionnaire consisting of 6 parts: A. Demography (9 items), B. Clinical part (B1-International Consultation on Incontinence (ICIQ-SF): 4 items, B2-characteristics of UI: 23 items), C. Quality of life with dominant numeric scale (13 items), D. Socio-economic part (9 items), E. EQ-5D (5 items), F. Symptoms of disease (9 items). There were 112 patients in the examined group from the160 asked to fill the questionnaire. The average age was 61 years. Results: Present level of QoL was identified as 6,60 on the scale from 1 to 10 (1-the worst,10 -the best), while in the time of the UI diagnosis it was 5,10. QoL was 8,10 in the time without UI and 9,40 in the total optimal state of health. Comparative to the QoL was examined the ability to work (AW), too. Present level of AW was identified as 6,50, while in the time of the BC diagnosis it was 5,50. AW was 8.20 in the time without UI and 9,40 in the total optimal state of health. The impact of treatment on QoL was 7,60 and the disease had impact 7,40 on family QoL. The average income was 465,04 € and the willingness to pay for 1 month of complete health was in average 391,06 € . cOnclusiOns: The disease had a significant impact on patients´s QoL. The treatment of UI had a significant impact on increasing QoL of patients.

Identifying patient‐important outcomes in polycystic kidney disease: An international nominal group technique study

“…Recently, a new health‐related quality of life instrument for patients with ADPKD (ADPKD‐IS) was developed, which consists of 14 items that measure three conceptual domains: physical, emotional and fatigue and four additional questions on guilt, sleep, size/shape of abdomen and urinary frequency/urgency . This measure includes outcomes identified in our study, including ability to work, life participation, fatigue, physical function, pain, anxiety, depression, gastrointestinal symptoms (early satiety), sleep, appearance and urine output . However, impact on family, financial impact and cognition are not included in the ADPKD‐IS.…”

“…Regional differences in how patientreported outcomes were prioritized across focus groups conducted in United States, Europe and Japan were also observed by ADPKD-IS investigators, reinforcing the importance of capturing diverse population. 25 These results are not surprising given the heterogeneous nature of ADPKD with variable symptom burden, and the potential variability in values attached to outcomes by country and cultures. Patients also prioritized outcomes based on direct relevance to their current stage of CKD.…”

“…The lack of such patient‐reported outcomes in trials was recently identified as a major gap in ADPKD trials at the Kidney Disease: Improving Global Outcomes (KDIGO) controversies conference . Recently, a new health‐related quality of life instrument for patients with ADPKD (ADPKD‐IS) was developed, which consists of 14 items that measure three conceptual domains: physical, emotional and fatigue and four additional questions on guilt, sleep, size/shape of abdomen and urinary frequency/urgency . This measure includes outcomes identified in our study, including ability to work, life participation, fatigue, physical function, pain, anxiety, depression, gastrointestinal symptoms (early satiety), sleep, appearance and urine output .…”

“…Of note, progression to ESKD was ranked lower in the Republic of Korea (0.18) compared to other countries (Australia: 0.38, France: 0.27), which could be because the majority were pre‐dialysis CKD patients (83%). Regional differences in how patient‐reported outcomes were prioritized across focus groups conducted in United States, Europe and Japan were also observed by ADPKD‐IS investigators, reinforcing the importance of capturing diverse population . These results are not surprising given the heterogeneous nature of ADPKD with variable symptom burden, and the potential variability in values attached to outcomes by country and cultures.…”

“…25 This measure includes outcomes identified in our study, including ability to work, life participation, fatigue, physical function, pain, anxiety, depression, gastrointestinal symptoms (early satiety), sleep, appearance and urine output. 25 However, impact on family, financial impact and cognition are not included in the ADPKD-IS.…”