None listed
Conditions
Brief summary
Autosomal Dominant Polycystic Kidney Disease (ADPKD) is a lifelong condition that causes fluid-filled cysts to grow in the kidneys and other organs, which can lead to pain and kidney failure. It affects about 25,000 Australians and is responsible for 1 in 10 people starting dialysis each year. People with ADPKD often experience abdominal swelling, pain, poor sleep, and other symptoms that aren't always well understood or addressed in clinical care. Women with ADPKD may face unique challenges related to hormones, pregnancy, and contraception, which are not always discussed with healthcare providers.
Interventions
This is a single-centre, cross-sectional observational study involving adults diagnosed with Autosomal Dominant Polycystic Kidney Disease (ADPKD) who are capable of providing informed consent. The study comprises five sub-studies, and participants may be enrolled in one, several, or all sub-studies depending on eligibility and their preferences during the consent process. Most participants are expected to undertake sub-studies i, ii, and iv, with female participants additionally expected to unde
This is a single-centre, cross-sectional observational study involving adults diagnosed with Autosomal Dominant Polycystic Kidney Disease (ADPKD) who are capable of providing informed consent. The study comprises five sub-studies, and participants may be enrolled in one, several, or all sub-studies depending on eligibility and their preferences during the consent process. Most participants are expected to undertake sub-studies i, ii, and iv, with female participants additionally expected to undertake sub-study iii. Sub-study details: Patient-reported outcomes (Sub-study i): Participants will complete two validated questionnaires at a single baseline visit: Assessment of Quality of Life – 8 Dimensions (AQOL-8D) (20min) McGill Pain Questionnaire (20min) Attitudes to genetic testing in ADPKD (Sub-study ii): Participants will complete a modified version of the International Genetics Literacy and Attitudes Survey (iGLAS16). (10min) Additionally, some participants will be invited to participate in virtual focus groups. These sessions will be recorded and analysed using thematic analysis. (30min) Single visit Female patient experience of pregnancy and hormone use (Sub-study iii): Female participants will complete a Women’s Health Questionnaire via REDCap. (10min) Selected participants will also take part in virtual focus groups, with thematic analysis applied to the discussions. (45min) Single visit Onset and type of proteinuria in ADPKD (Sub-study iv): This sub-study involves retrospective analysis of historical laboratory data, specifically urine albumin-to-creatinine ratio (UACR) and urine protein-to-creatinine ratio (UPCR). No direct participant involvement is required. Impact of ADPKD on sleep quality and patterns (Sub-study v): Participants will wear a sleep tracking device at home for 10 consecutive nights. Data collected will include sleep duration, quality, and disturbances. (2 visits, one to collect and one to return device approx 10 days apart) Duration of Observation: All data collection is cross-sectional and occurs at a single time point. There are no follow-up visits. Participation in questionnaires and focus groups is expected to take approximately 20–60 minutes depending on the number of sub-studies involved.
Sponsors
The Royal Melbourne Hospital
Eligibility
Sex/Gender
All
Age
18 Years to No maximum
Healthy volunteers
No
Inclusion criteria
Adult patients providing informed consent Adult patients with a diagnosis of ADPKD
Exclusion criteria
Inability to give informed consent Pregnancy or breastfeeding
Outcome results
None listed