Developing a handheld record for patients with cystic fibrosis.
Omendra Narayan1, Siobhan Davies1, Carly Tibbins2
1Academic Department of Child Health, Royal Stoke University Hospital, Stoke-on-Trent, UK.
Patient Related Outcome Measures
|August 29, 2015
Summary
Patient handheld records (PHHRs) empower individuals in managing their health. A new cystic fibrosis (CF) PHHR was developed and made freely available online to improve self-management for CF patients.
Area of Science:
- Medical Informatics
- Patient Empowerment
- Chronic Disease Management
Background:
- Patient handheld records (PHHRs) are effective tools for enhancing self-management and adherence in various chronic conditions.
- PHHRs have demonstrated success in improving preventative care for pediatric populations.
- Currently, no standardized PHHR exists specifically for individuals with cystic fibrosis (CF).
Purpose of the Study:
- To report the development process of a standardized PHHR for cystic fibrosis (CF) patients.
- To describe the final CF PHHR document.
- To analyze user feedback on the implemented CF PHHR at a dedicated center.
Main Methods:
- Consultation process involving stakeholders to design the CF PHHR.
- Description of the finalized CF PHHR content and structure.
- Analysis of feedback collected from patients and healthcare providers using the CF PHHR.
Main Results:
- A CF-specific PHHR was successfully developed through a comprehensive consultation process.
- The CF PHHR was implemented and user feedback was collected and analyzed.
- The developed CF PHHR is now freely accessible online for broader use.
Conclusions:
- The developed CF PHHR has the potential to enhance self-management and patient engagement in CF care.
- Feedback analysis provides insights for further refinement and optimization of the CF PHHR.
- Making the CF PHHR freely available online facilitates wider adoption and accessibility for the CF community.
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