TABLE 4.

Cultivate the importance of health-related quality of life (HRQoL) in the care of those affected by pulmonary hypertension (PH)

Clinical management

Promote access to optimal care

Expand MDT approach

Accreditation of PH centres

Twinning of expert and developing centres

Empower patient participation in management

Multimedia patient information/materials

Create and endorse methods to enhance HCP and patient/caregiver communication:

Shared decision making

Narrative-based medicine

Palliative care techniques

Provider development

Integrate concepts of narrative-based medicine, shared decision making and HRQoL into clinical training

Clinical research

Support, expand and harmonise HRQoL databases

Prioritise HRQoL as a distinct end-point in clinical trials

Foster patients’ input into clinical study design and outcome measurements

Patient associations

Promote the mission and role of PH patient organisations worldwide

MDT: multidisciplinary team; HCP: healthcare provider.