Practical solutions for a holistic approach to the engagement of pulmonary arterial hypertension (PAH) patients

Practical solutionConsiderations for implementing practical solutions
Training for HCPs and other multidisciplinary team membersThe benefits of patient engagement and self-management
How to work collaboratively with patients to motivate them to participate in their own care
Communicating with patients using language that is easy for them to understand
Helping patients to understand and communicate their fears and establish their own goals
Managing the broader aspects of PAH beyond the physical symptoms
Understanding the support and services available from patient associations
Specific training for HCPs in shared care centres
“Information prescriptions”To integrate high-quality information into the healthcare pathway in a way that is tailored to the needs of the individual
Information could be selected by the HCP and “prescribed” on the basis of the individual patient's needs, goals and the stage of their journey since diagnosis
This may include information on PAH and its management including the broader aspects of the disease beyond physical symptoms, as well as referral to a local patient group
Written care plansRecord of information about the patient's care, which they can refer back to between consultations
Helps the patient understand that there are a variety of options available to them
Encourages the patient to consider their role in their own care
Emphasises the importance of collaboration and shared decision making between the patient and HCP
Helps patients to communicate with local family doctors and HCPs in shared care centres
Patient “passports”A digital or hard copy patient “passport” may be very useful for both patient self-management and as a central record to improve information sharing between the multidisciplinary team
May contain information on the disease, available treatments and written care plan, a record of test results, information on self-care and the broader aspects of the disease, and where to go for support
Helps patients to communicate with local family doctors and HCPs in shared care centres
Patient self-assessment and management toolsMay be developed to assist patients in accessing information that is relevant to them and their individual situations. Could be in the form of patient “diaries”
Patient self-management coursesCan be offered by the multidisciplinary team to educate and activate patients early following the diagnosis of PAH
Patient-to-patient mentoringMay provide patients with individualised support, particularly with regards to the broader aspects of PAH beyond the physical symptoms
Patients could be matched according to factors such as age and cultural background
Could take the form of chronic disease self-management programmes where a patient with chronic disease is involved in leading the workshop, providing advice and support to patients attending on how to best manage their disease [41]
Promoting patient associationsTraining HCPs on the services available so that they can act as a conduit to these services for patients
Training patient association members in marketing skills and activities via social media and traditional routes to raise the profile and visibility of patient associations among PAH patients
  • Data from [10].