The importance of patient perspectives in pulmonary hypertension

24 January, 2019

A new multidisciplinary review of the inclusion of individual patient perspectives in pulmonary hypertension (PH) management argues that patient care can be improved by cultivating the importance and relevance of health-related quality of life in direct clinical care.

The paper, written by Professor Michael McGoon and colleagues, provides in-depth analysis and discussion of a range of aspects related to patient involvement in research and care for PH patients It is part of a series of articles included in the latest edition of the European Respiratory Journal that covers new developments from the 6th World Symposium on Pulmonary Hypertension.

The authors considered the current status of patient input in areas including health-related quality of life measures, narrative medicine, shared decision making and palliative care.

Further, the authors assessed the current involvement of collective patient perspectives through patient associations and support groups, and patients’ involvement in educational, advocacy and awareness raising activities. Patients’ access to healthcare and their involvement in PH research and registries was also assessed.

A number of recommendations are made that relate specifically to clinical management, provider development, clinical research and patient associations, including:

  • Promoting access to optimal disease management
  • Empowering patients’ participation in the management of their disease
  • Role and timing of palliative care
  • Integrating concepts of patients’ perspectives into medical education
  • Supporting, expanding and harmonising health-related quality of life databases
  • Incorporating patients’ perspectives early into clinical study design and outcome measurements
  • Recognising and enhancing the role of pulmonary arterial hypertension patient organisations / professional organisations

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