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Symptom severity and its effect on health-related quality of life over time in patients with pulmonary hypertension: a multisite longitudinal cohort study
  1. Janelle Yorke1,
  2. Christi Deaton2,
  3. Malcolm Campbell1,
  4. Linda McGowen3,
  5. Paul Sephton4,
  6. David G Kiely4,5 and
  7. Iain Armstrong4
  1. 1Division of Nursing, Midwifery and Social Work, School of Health Sciences, University of Manchester, Manchester, UK
  2. 2Cambridge Institute of Public Health, University of Cambridge School of Clinical Medicine, Cambridge, UK
  3. 3School of Healthcare, University of Leeds, Leeds, UK
  4. 4Sheffield Pulmonary Vascular Disease Unit, Royal Hallamshire Hospital, Sheffield, UK
  5. 5Department of Infection, Immunity and Cardiovascular Disease, University of Sheffield, Sheffield, UK
  1. Correspondence to Dr Janelle Yorke; janelle.yorke{at}


Introduction The aim of this cohort study was to examine health-related quality of life (HRQoL) and symptomatology in patients with pulmonary hypertension (PH) and explore factors that influence its evolution over time.

Methods A prospective longitudinal multisite cohort study. Participants were recruited from specialist UK PH centres and completed a questionnaire pack at baseline, 6, 12 and 18 months to assess HRQoL (emPHasis-10), dyspnoea, fatigue, sleep, anxiety and depression.

Results 185 patients entered the study at baseline and 126 (68%) completed month 18. At baseline, patients had significant impairment of HRQoL, anxiety, depression, dyspnoea and severe fatigue. No significant changes, apart from a reduction in the Hospital Anxiety and Depression Scale-Anxiety score (P=0.04), were observed over 18 months. Depression and dyspnoea were predictors of HRQoL (P=0.002 and P=0.03, respectively). Oxygen use was also associated with diminished HRQoL and increased symptom severity.

Conclusion Patients with PH experience high levels of symptom severity and the negative impact on HRQoL was unchanged over time. The use of oxygen therapy, in particular, was associated with a significant impact on HRQoL. Further study of factors impacting HRQoL and interventions that target a combination of physiological and psychosocial consequences of living with PH are needed.

  • psychology
  • primary pulmonary hypertension

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  • Contributors JY and IA conceived the original study idea. JY, IA, CD, LMcG, MC, PS and DGK all contributed to the study design, data analysis and interpretation. PS collected data. All authors contributed to the preparation of the manuscript.

  • Funding Funding received by the Pulmonary Hypertension Association UK.

  • Competing interests None declared.

  • Patient consent Obtained.

  • Ethics approval North West—Lancaster 13/NW/0245.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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