Question Prompt List (QPL) for PBC

The Question Prompt List (QPL) for Primary Biliary Cholangitis (PBC) is a standardized tool designed to enhance physician-patient communication, improve patient engagement in care, and optimize health outcomes for individuals living with PBC. Below is a detailed explanation of the QPL, its development process, and its clinical significance:

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Goal of the QPL

The primary goal of the QPL is to provide structured guidance to patients living with PBC on what questions to ask their physicians during consultations. This helps address unmet informational and therapeutic needs, empowering patients to actively participate in their care and make informed decisions.

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Rationale

Patients with PBC often face challenges in knowing what information to seek during medical appointments. This lack of structured guidance can lead to gaps in understanding their condition, treatment options, and prognosis. The QPL was developed to bridge this gap by equipping patients with a carefully curated set of questions that promote shared decision-making and personalized care.

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Development Process

The QPL was developed using a rigorous, evidence-based methodology through a Delphi study that involved international PBC experts and patient representatives. Below are the key steps in its creation:

1. Participants:

• 108 respondents from 23 countries across 4 continents, including hepatologists, researchers, and patient advocates.
• 56.5% of participants had over 10 years of experience with PBC.

2. Survey Design:

• The initial survey included 43 potential questions covering nine aspects of PBC care: diagnosis, symptoms, treatment, monitoring, comorbidities, and support.
• Questions were evaluated based on importance, with those rated as moderately/very important by >70% of participants classified as Best Candidate Questions (BCQs).

3. Refinement:

• Two rounds of in-person meetings were held to refine and finalize the wording and content of the QPL for clinical usability.

4. Consensus:

• The final QPL was unanimously approved by 19 study team members during the consensus meeting.

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Final Output

The finalized QPL contains eight core patient questions deemed most likely to improve care quality, physician-patient dialogue, and shared decision-making. These questions are:

1. Symptom Management:

• "What are the options to manage my itching and/or fatigue?"
• Focuses on addressing common but often underrecognized PBC symptoms.

2. First-Line Therapy:

• "Am I on the correct dosage of ursodeoxycholic acid (UDCA)?"
• Highlights the importance of proper dosing and adherence to first-line therapy.

3. Second-Line Therapy:

• "Do I need any therapy in addition to ursodeoxycholic acid?"
• Guides discussions on add-on treatments such as obeticholic acid or fibrates.

4. Disease Severity:

• "What is my risk for liver disease progression?"
• "Do I have cirrhosis?"
• Prompts evaluation of fibrosis, prognosis, and disease staging.

5. Monitoring:

• "How often do I need a liver stiffness measurement over time?"
• Encourages regular assessment through transient elastography (VCTE) to monitor disease progression.

6. Bone Health:

• "Should my bone health be monitored and/or optimized?"
• Addresses the high risk of osteoporosis and fractures in PBC patients.

7. Information Access:

• "Where can I receive more information and support?"
• Ensures patients are connected with educational resources and peer-support networks.

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Clinical Importance

The QPL is designed to empower patients and improve various aspects of care, including:

• Enhanced Dialogue:

• Facilitates open communication between patients and physicians, ensuring that critical issues are addressed during consultations.

• Symptom Control:

• Provides a structured way to discuss and manage debilitating symptoms like fatigue and itching.

• Personalized Treatment Planning:

• Helps tailor treatment regimens based on individual needs, such as adjusting UDCA dosage or considering second-line therapies.

• Monitoring and Risk Assessment:

• Promotes regular evaluations of liver stiffness and bone health, ensuring timely interventions and better long-term outcomes.

• Access to Support:

• Directs patients to reliable educational materials and peer-support groups for additional guidance and emotional support.

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Limitations

While the QPL is an evidence-based tool, its wording may need adaptation to account for:

• Language Differences:
• Translation may be required for non-English-speaking populations.
• Cultural Variations:
• Questions may need to be tailored to align with cultural norms and expectations.
• Healthcare Settings:
• The applicability of questions may vary depending on the healthcare system in different countries.

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Conclusion

The PBC QPL is a patient-centered tool that standardizes physician-patient communication, promotes shared decision-making, and addresses key aspects of care. By empowering patients to ask pertinent questions, the QPL improves care adherence, symptom management, and overall outcomes for individuals living with PBC. It represents a significant step forward in optimizing patient engagement in chronic disease management.