Practice: Nephrology
ADPKD
ADPKD Patient Journey (extended)

Patient Journey: Clinical- and Data Domain

Our approach on integrating a "Data" level into the clinical process for ADPKD treatment builds upon systematically mapping out data sources, content, usage, and challenges throughout each step of the patient journey. This approach not only covers the enrichment of the clinical decision-making process but all types of enhancements in patient care through informed insights.



Interactive Process Model



Data Domain Overview

IndexData SourceContentsRelevanceSources at UK-Cologne
1Patient-Generated Health Data (PGHD)Symptoms journal, family medical history, lifestyle factors, medication adherence recordsEarly identification of symptoms, impact of lifestyle, tracking side effectsPatient portals, mobile health apps
2Electronic Health Records (EHR)Medical history, clinical notes, lab results, imaging studies, genetic tests, treatment plansComprehensive health overview, diagnostic data, treatment responsesHospital Information System (HIS)
3Imaging DatabasesUltrasound, MRI, CT scan images and reportsDiagnosis confirmation, disease staging, cyst monitoringRadiology Department
4Laboratory Information Systems (LIS)Blood and urine test results (renal function, liver function, proteinuria, hematuria)Initial diagnosis, kidney function monitoring, complication detectionOn-site Clinical Laboratories
5Genetic Testing ReportsGenetic test results identifying ADPKD mutationsConfirmatory diagnosis, family screening, prognostic informationGenetic Counseling Services
6Pharmacy RecordsPrescribed medications, dosages, refill historyMedication management, adherence tracking, drug interactionsHospital Pharmacy
7Insurance Claims DatabasesTreatment claims, procedure codes, cost dataEconomic impact of ADPKD treatment, care delivery patternsAdministration and Billing Department
8Clinical Trial DatabasesData on clinical trials, investigational treatments, efficacy, safety outcomesPotential new treatments, emerging research findingsResearch and Development Department
9Patient RegistriesData from ADPKD patients including demographics, treatment patterns, outcomesDisease patterns, long-term outcomes, treatment effectivenessNephrology Department Registry
10EHIS, NHANES, GEDA & DEGSEpidemiological data on kidney disease prevalence, risk factors, health outcomesPopulation-level trends, risk factors related to ADPKDPublic Health Department (External Source)
11Social Media and Online ForumsPatient experiences, treatment reviews, quality of life discussionsPatient-reported outcomes, peer support, patient educationOnline Patient Support Groups (External Source)
12Health and Wellness AppsHealth tracking data, blood pressure readings, dietary intake, exerciseLifestyle management, correlations between activities and disease progression or managementMobile Health Applications (External Source)
13MEDICtbdtbd

Pre-Clinic Process

  1. Recognizing the Need for Medical Attention
    • Description: The patient, their family members or the family doctor recognize symptoms that may be associated with kidney issues, such as pain in the back or sides, changes in urine output, or hypertension.
  2. Finding a Suitable Clinic or Specialist
    • Description: The patient seeks out a healthcare provider, which could be a general practitioner, a nephrologist, or a specialized clinic like the University Clinic of Cologne for further evaluation.
    • Key Decision points:
      1. General Practitioner vs. Clinical Specialist: The decision may depend on the severity of symptoms, accessibility, or prior medical advice.
      2. Researching and Selecting a Clinic: Patients might research or get referrals to find a clinic that specializes in kidney diseases or specifically in ADPKD.
    • Considerations: Accessibility, insurance coverage, and the reputation of the healthcare provider can influence this decision.
  3. Making an Appointment
    • Description: Once a suitable healthcare provider is identified, the patient or their caregivers make an appointment for an initial consultation.
    • Considerations: The urgency of the symptoms can influence how quickly an appointment is sought.

Initial Clinic Visit

  1. Patient Arrival and Registration
    • Process: Upon arriving at the clinic, the patient undergoes a standard registration process, providing personal and medical information.
    • Medical History Documentation: Gathering detailed information about the patient’s medical history, focusing on symptoms that might indicate ADPKD.
    • Symptom Identification: Clinicians note any ADPKD-related symptoms reported by the patient.
    • Importance: Early detection and risk assessment (Chapman et al., 2015).
  2. Initial Assessment by Healthcare Professional
    • Physical Examination: A healthcare professional conducts a comprehensive physical examination, including checking blood pressure and examining for physical signs indicating kidney issues.
    • Family History Review: Evaluation of the patient’s family medical history, particularly looking for a genetic predisposition to ADPKD.
    • Determining Next Steps: Based on this assessment, the healthcare professional decides whether to proceed with further diagnostic tests.
    • Consideration: Early clinical assessment crucial (Chapman et al., 2015).

Diagnostic Process

  1. Laboratory Tests
    • Renal and liver function tests; urine analysis.
    • Options: Advanced genetic testing based on initial results.
    • Research: Kidney function markers in ADPKD progression (Müller, R. U., & Benzing, T., 2018).
  2. Imaging Studies
    • Standard renal ultrasound; MRI or CT for detailed imaging.
    • MRI preferred in cases with impaired renal function.
    • Study: Imaging modalities in ADPKD (Pei et al., 2015).
  3. Genetic Counseling and Testing (if indicated)
    • Offered to assess risk in family members.
    • Genetic testing confirms diagnosis and aids in family planning.
    • Impact: Genetic counseling in patient management (Audrézet et al., 2016).

Treatment Decision

  1. Consultation with Nephrologist
    • Discussion of diagnostic results and kidney function evaluation.
  2. Treatment Planning
    • Personalized treatment based on kidney disease stage and patient health.
    • Approach: Personalized treatment plans crucial (Chebib & Torres, 2016).

Treatment Implementation

  1. Management of Hypertension
    • Antihypertensive medication and lifestyle changes.
    • First-line treatments: ACE inhibitors or ARBs.
    • Role: Blood pressure control in ADPKD progression (Schrier et al., 2014).
  2. Symptom Management
    • Strategies for pain management and infection treatment.
    • Options: Analgesics or surgical interventions for severe pain.
    • Focus: Effective symptom management strategies (Casteleijn et al., 2014).
  3. Lifestyle Modifications
  4. Medications Specific to ADPKD
    • Use of Tolvaptan under specific criteria.
    • Monitoring for side effects, especially liver function.
    • Consideration: Tolvaptan's role in ADPKD (Torres et al., 2017 & Müller et al., 2023).
  5. Regular Monitoring
    • Ongoing kidney function tests and imaging studies.
    • Innovation: AI-supported progression monitoring based on kidney volume (Jung et al. 2023).

Advanced Care (if required)

  1. Management of Kidney Failure
    • Dialysis options and kidney transplant evaluation.
  2. Ongoing Support and Counseling
    • Psychological support and education about disease progression.
  3. Follow-up Visits
    • Regular nephrologist check-ups for treatment monitoring and adjustments.

References

  • Müller, R. U., & Benzing, T. (2018). "Management of autosomal-dominant polycystic kidney disease—state-of-the-art."
  • Müller, R. U., et al. (2021). "An update on the use of tolvaptan for autosomal dominant polycystic kidney disease: consensus statement on behalf of the ERAWorking Group on Inherited Kidney Disorders, the European Rare Kidney Disease Reference Network and Polycystic Kidney Disease International."
  • Jung, H. S., et. al (2023). "Feasibility of artificial intelligence-based decision supporting system in tolvaptan prescription for autosomal dominant polycystic kidney disease."
  • Chapman, A. B., et al. (2015). "Autosomal-dominant polycystic kidney disease (ADPKD): Executive summary from a Kidney Disease: Improving Global Outcomes (KDIGO) Controversies Conference."
  • Torres, V. E., et al. (2017). "Tolvaptan in Later-Stage Autosomal Dominant Polycystic Kidney Disease."
  • Grantham, J. J., et al. (2009). "Autosomal dominant polycystic kidney disease: The last 3 years."
  • Pei, Y., et al. (2015). "Imaging-based diagnosis of autosomal dominant polycystic kidney disease."
  • Audrézet, M. P., et al. (2016). "Autosomal Dominant Polycystic Kidney Disease: Comprehensive mutation analysis of PKD1 and PKD2 in 700 unrelated patients."
  • Chebib, F. T., & Torres, V. E. (2016). "Autosomal Dominant Polycystic Kidney Disease: Core Curriculum 2016."
  • Schrier, R. W., et al. (2014). "Blood pressure in early autosomal dominant polycystic kidney disease."
  • Casteleijn, N. F., et al. (2014). "A stepwise approach for effective management of chronic pain in autosomal-dominant polycystic kidney disease."
  • https://ec.europa.eu/eurostat/de/web/microdata/european-health-interview-survey (opens in a new tab)
  • https://www.cdc.gov/nchs/nhanes/index.htm (opens in a new tab)
  • https://www.rki.de/DE/Content/Gesundheitsmonitoring/Studien/Geda/Geda_node.html (opens in a new tab)
  • https://www.rki.de/DE/Content/Gesundheitsmonitoring/Studien/Degs/degs_node.html (opens in a new tab)