K LAMBERT1, T MA1
1University of Wollongong, Wollongong, Australia
Aim: To explore the information needs and concerns of people with Polycystic Kidney Disease (PKD).
Background: Polycystic Kidney Disease (PKD) is a hereditary disorder that has no cure. PKD results in end stage kidney failure. Searching for health information online and via social media is a common phenomenon in many medical conditions. However, no recent studies have documented the information needs, online behaviours and concerns of people with PKD.
Methods: A 17 item survey was constructed for distribution via PKD related social media groups on Facebook. Seven groups distributed the survey with permission from the group owners. Open free text survey questions were analysed thematically using content analysis.
Results: A total of 536 respondents completed the online survey (70.9% female, 77% aged 35-70, 70.2% diagnosed more than 10 years ago). The major information need expressed by participants with PKD was for dietary information. Information regarding medications, medical management and symptom control were also requested. Learning to navigate dietary ambiguities; managing social, psychological and emotional needs; and accepting an uncertain future were the major themes that arose when asked to describe the major challenges of living with PKD. In addition to a strong desire for practical and specific dietary information, participants expressed a need for more online information pertaining to management of fatigue, pain, complications and how to manage mental health. Online peer support was also highly regarded.
Conclusions: This study provides insights into the type of information desired by people with PKD. While diet is an important and frequently expressed need, there remains a large demand for information on how to support psychological needs, and on medical management in order to support treatment decision making.
Kelly is an Advanced Accredited Practising Dietitian and Renal Dietitian. Her research focuses on the impact of health literacy in people with CKD, health communication among vulnerable populations and behaviour change research. Kelly is a Senior Lecturer and Academic Program Director of Nutrition and Dietetics at the University of Wollongong.