Understanding barriers to medication, dietary, and lifestyle treatments prescribed in polycystic kidney disease

Abstract

BackgroundAutosomal dominant polycystic kidney disease (PKD) is the most common genetic renal disease and the fourth leading cause of end-stage renal disease in the United States. Although there is no cure for PKD, several treatments are considered to be beneficial, including blood pressure control, exercise, low-salt diet, and high volume water intake. However, levels of understanding of the importance of these treatments and adherence to these recommendations vary among patients. This study explores illness perception models of patients with PKD to reveal barriers in adherence to prescribed therapies; satisfaction with medical care; and sources of medical information.MethodsWe designed a phenomenological interview study to evaluate illness perception models of individuals with PKD. Patients were identified from the national PKD Foundation e-mail distribution list (N = 190) and responded voluntarily to an introductory survey (N = 50). Seventeen PKD patients in the Bay Area were scheduled for one-on-one in-depth interviews with one trained interviewer (W-CT). Open-ended questions administered with an interview guide were used to evaluate patients’ beliefs.ResultsMean age was 56.6 +/− 12 years (range 29–78); 65% were female. Many of the PKD patients in this study were highly motivated and willing to incorporate blood pressure, exercise, low-salt diet, and high volume water intake into their daily routines. Barriers to adherence to these therapies include personal beliefs and confusion due to unclear recommendations.ConclusionsThese findings suggest there is variability between what patients understand about their disease and treatments and what they believe their doctors have told them. Not all physicians focus on lifestyle-based treatments, but the majority of PKD patients in our study are motivated and willing to incorporate blood pressure control, exercise, low-salt diet, and high volume water intake into their daily routines and would like specific recommendations on how to implement these. These findings support a role for further exploring patient beliefs about the disease and its necessary treatments in order to design strategies to improve communication and meet the needs of these patients.Electronic supplementary materialThe online version of this article (doi:10.1186/s12882-017-0641-3) contains supplementary material, which is available to authorized users.

Barriers and facilitators for engagement and implementation of exercise in end‐stage kidney disease: Future theory‐based interventions using the Behavior Change Wheel

“…For single‐payer, universal health care systems, transparent patient activity quality indicators could be developed. Although long term cost benefits have not been studied rigorously, cost savings such as decreased hospitalization, and decreased antihypertensive medication are consistent with patients’ views that exercise can decrease personal health care costs and costs to the health system…”

Polycystic Kidney Disease

“…• Obtain a complete medical history and full body assessment • Encourage low-salt diet, high water intake, and exercise (Tran et al, 2017).…”

“…• Monitor blood pressure and provide medica:ons like ACE inhibitors for blood pressure management (Tran et al, 2017).…”

Salt-deficient diet exacerbates cystogenesis in ARPKD via epithelial sodium channel (ENaC)

“…Unfortunately, there is no treatment for ARPKD available to date. Generally, PKD patients are advised to restrict their dietary sodium intake, as this is expected to reduce blood pressure and albuminuria [ [12] , [13] , [14] , [15] , [16] , [17] ]. Although a low salt diet is usually considered beneficial for individuals with CKD [ [4] , [5] , [6] ], there has been no comprehensive research pertaining to dietary sodium content recommended for ARPKD subjects.…”