Living with pulmonary artery hypertension: Patients’ experiences

Flattery, Maureen; Pinson, Janet; Savage, Laura; Salyer, Jeanne

doi:10.1016/j.hrtlng.2004.06.010

Cited by 60 publications

(68 citation statements)

References 27 publications

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“…Greater understanding regarding the diseasespecific processes by which HRQoL becomes impaired in PAH is lacking. Emerging data from studies using qualitative techniques indicate that psychosocial factors, such as coping with uncertainty and accommodating medical therapy, may play an influential role (32). Neurocognitive impairments may be important as well (33).…”

Section: Future Directionsmentioning

confidence: 99%

Health-related Quality of Life and Patient-reported Outcomes in Pulmonary Arterial Hypertension

Chen¹,

Taichman²,

Doyle³

2008

Proceedings of the American Thoracic Society

101

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Advances in our understanding of the basic pathophysiology of pulmonary arterial hypertension (PAH) has led to an expanding number of therapeutic options. The ultimate goals of therapy are to lengthen survival while improving symptoms and quality of life. A wealth of research in other conditions has established health-related quality of life (HRQoL) to be an important clinical endpoint. Until recently, however, little was known about HRQoL in PAH, and how best to measure it. Over the past few years, several studies have begun contributing to this growing area of research. Instruments used to assess HRQoL have varied between studies. The extent to which these instruments are valid in PAH depend on their specific measurement properties. In this article, we provide an overview of the different types of patient-reported outcomes (PROs) used in PAH, focusing in particular on the measurement of HRQoL. In the process, we review the current literature on HRQoL in PAH, summarize the available data from randomized controlled trials, and discuss the implications of these findings on future research. Despite significant progress, the study of HRQoL in PAH remains a nascent field relative to other conditions. As the use of PROs continues to increase, additional work will be needed to begin standardizing the reporting and interpretation of such outcomes in future clinical trials.

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Section: Future Directionsmentioning

confidence: 99%

Health-related Quality of Life and Patient-reported Outcomes in Pulmonary Arterial Hypertension

Chen¹,

Taichman²,

Doyle³

2008

Proceedings of the American Thoracic Society

101

View full text Add to dashboard Cite

show abstract

“…Right ventricular function likely underlies the effects of functional class and exercise capacity on mortality, as suggested by the finding of diminished survival with a history of clinical rightheart failure and hemodynamic indices of right ventricular dysfunction (i.e., elevated right atrial pressure, decreased cardiac output and mixed venous oxygen saturation). 1,2,12 Relatively little information regarding quality of life in PAH is available, 13,14 but studies to date suggest that functional class and 6MWD correlate well with both the physical and mental component scores of the Short-Form 36 survey, irrespective of the type of PAH therapy. 15,16 Achieving other surrogate end-points may be an important intermediate aim of therapy.…”

Section: Rationale For Combination Therapy In Pah Therapeutic Efficacmentioning

confidence: 99%

Management of Pulmonary Arterial Hypertension With a Focus on Combination Therapies

Benza

Park

Keogh

et al. 2007

The Journal of Heart and Lung Transplantation

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“…40,44 Sullivan et al 45 observed humor to be the most often used coping mechanism in a study of 60 women with four common chronic illnesses: cancer, rheumatoid disease, multiple sclerosis, and diabetes. Flattery et al, 46 in a study of 11 participants living with chronic pulmonary artery hypertension, noted humor to be useful as a means to make sense of one's illness. Humor can bring some degree of normalcy to the time spent waiting, helping the patient to cope with the uncertainty of the wait.…”

Section: Facilitating Copingmentioning

confidence: 99%

“…Spiritual coping measures were found to help those with chronic illness with despair and to find comfort in the journey through their illness. 47,48 Flattery and colleagues 46 noted that spirituality enriched the lives of those experiencing uncertainty in their journey with chronic pulmonary artery hypertension. For women with multiple sclerosis, the negative impact of uncertainty on mastering the illness was significantly reduced by spiritual and social relationships.…”

Section: Facilitating Copingmentioning

confidence: 99%