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
Index | Data Source | Contents | Relevance | Sources at UK-Cologne |
---|---|---|---|---|
1 | Patient-Generated Health Data (PGHD) | Symptoms journal, family medical history, lifestyle factors, medication adherence records | Early identification of symptoms, impact of lifestyle, tracking side effects | Patient portals, mobile health apps |
2 | Electronic Health Records (EHR) | Medical history, clinical notes, lab results, imaging studies, genetic tests, treatment plans | Comprehensive health overview, diagnostic data, treatment responses | Hospital Information System (HIS) |
3 | Imaging Databases | Ultrasound, MRI, CT scan images and reports | Diagnosis confirmation, disease staging, cyst monitoring | Radiology Department |
4 | Laboratory Information Systems (LIS) | Blood and urine test results (renal function, liver function, proteinuria, hematuria) | Initial diagnosis, kidney function monitoring, complication detection | On-site Clinical Laboratories |
5 | Genetic Testing Reports | Genetic test results identifying ADPKD mutations | Confirmatory diagnosis, family screening, prognostic information | Genetic Counseling Services |
6 | Pharmacy Records | Prescribed medications, dosages, refill history | Medication management, adherence tracking, drug interactions | Hospital Pharmacy |
7 | Insurance Claims Databases | Treatment claims, procedure codes, cost data | Economic impact of ADPKD treatment, care delivery patterns | Administration and Billing Department |
8 | Clinical Trial Databases | Data on clinical trials, investigational treatments, efficacy, safety outcomes | Potential new treatments, emerging research findings | Research and Development Department |
9 | Patient Registries | Data from ADPKD patients including demographics, treatment patterns, outcomes | Disease patterns, long-term outcomes, treatment effectiveness | Nephrology Department Registry |
10 | EHIS, NHANES, GEDA & DEGS | Epidemiological data on kidney disease prevalence, risk factors, health outcomes | Population-level trends, risk factors related to ADPKD | Public Health Department (External Source) |
11 | Social Media and Online Forums | Patient experiences, treatment reviews, quality of life discussions | Patient-reported outcomes, peer support, patient education | Online Patient Support Groups (External Source) |
12 | Health and Wellness Apps | Health tracking data, blood pressure readings, dietary intake, exercise | Lifestyle management, correlations between activities and disease progression or management | Mobile Health Applications (External Source) |
13 | MEDIC | tbd | tbd |
Pre-Clinic Process
- 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.
- 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:
- General Practitioner vs. Clinical Specialist: The decision may depend on the severity of symptoms, accessibility, or prior medical advice.
- 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.
- 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
- 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).
- 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
- 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).
- 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).
- 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
- Consultation with Nephrologist
- Discussion of diagnostic results and kidney function evaluation.
- Treatment Planning
- Personalized treatment based on kidney disease stage and patient health.
- Approach: Personalized treatment plans crucial (Chebib & Torres, 2016).
Treatment Implementation
- 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).
- 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).
- Lifestyle Modifications
- Dietary changes, reduced salt intake, and increased water consumption.
- More details on ADPKD supporting factors: ADPKD Supporting Factors (opens in a new tab)
- 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).
- 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)
- Management of Kidney Failure
- Dialysis options and kidney transplant evaluation.
- Ongoing Support and Counseling
- Psychological support and education about disease progression.
- 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)