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DESIGN

7 FOCUS GROUPS FOR PATIENTS AND CAREGIVERS - 76 PATIENTS AND CAREGIVER.

1 FOR CLINICAL AND RESEARCH EXPERTS - 8 EXPERTS.

OPEN ENDED DISCUSSION AND NOMINAL VOTING TECHNIQUE TO PRIORITIZE.

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IMPORTANT QUESTIONS ADDRESSED BY PATIENTS

IN PATIENTS WITH POLYCYSTIC KIDNEY DISEASE (PKD), WHAT ARE THE EFFECTS OF:

1.A LOW PROTEIN DIET VS HIGH PROTEIN DIET?

2.LIMITED WATER INTAKE VS HIGH WATER INTAKE?

3.PPI MEDICATIONS VS OVER THE COUNTER DRUGS?

4.A KETOGENIC DIET VS A NON-KETOGENIC DIET?

5.A LOW ACID DIET VS A REGULAR DIET?

6.EARLY SCREENING VS LATE SCREENING (ON PATIENT ACTIVATION?)?

7.MRI OR CT SCANNING VS ULTRASOUND?

8.SHOWING THE CYST BURDEN TO THE PATIENT THROUGH IMAGING VS NOT SHOWING THE CYST BURDEN ON IMAGING?

9.STANDARDIZED MANAGEMENT VS NON-STANDARDIZED MANAGEMENT?

10.WRITTEN INFORMATION VS NON-WRITTEN INFORMATION?

11.USING GENERIC WRITTEN INFORMATION VS USING A DECISION SUPPORT TOOL?

12.TREATING ANXIETY WITH MEDICATION VS TREATING ANXIETY WITHOUT MEDICATION?

13.COORDINATED CARE VS STANDARDIZED CARE?

INTERPROFESSIONAL CARE VS COORDINATED CARE?

15.A MODIFIED KETOGENIC DIET VS A KETOGENIC DIET?

16.SECRECY VS TRANSPARENCY ABOUT THE DISEASE?

17.EARLY OR IMMEDIATE REFERRAL TO A NEPHROLOGIST VS DELAYED REFERRAL TO A NEPHROLOGIST?

18.TREATING WITH TOLVAPTAN VS CONVENTIONAL TREATMENTS?

19.ASSESSING SERUM CREATININE VS OTHER MODALITIES?

20.REGULAR SCREENING FOR BRAIN ANEURYSM VS IRREGULAR OR NO SCREENING FOR BRAIN ANEURYSM?

21.PARTICIPATING IN SEXUAL COUNSELING VS NOT RECEIVING SEXUAL COUNSELING?

22.PARTICIPATING IN HIGH IMPACT SPORTS VS LOW IMPACT SPORTS OR ACTIVITIES?

23.INCLUDING PATIENT’S STORIES VS EXCLUDING PATIENT’S STORIES?

24.BEING EXPOSED TO ANECDOTAL EVIDENCE VS SCIENTIFIC EVIDENCE?

25.UNDERGOING A CONTINUOUS EDUCATION PROGRAM VS NOT UNDERGOING A CONTINUOUS EDUCATION PROGRAM?

26.CARRYING A PREGNANCY, OR MULTIPLE PREGNANCIES ON DISEASE PROGRESSION VS NEVER CARRYING A PREGNANCY?

27.INVESTING IN LIFE INSURANCE FOR YOUR CHILDREN VS INVESTING IN OTHER FINANCIAL OPTIONS?

28.PARTICIPATING IN INTERMITTENT FASTING VS NOT PARTICIPATING IN INTERMITTENT FASTING?