Evaluating Health-Related Quality of Life, Work Ability, and Disability in Pulmonary Arterial Hypertension

Rubenfire, Melvyn; Lippo, Giuseppina; Bodini, Bruno Dino; Blasi, Francesco; Allegra, L.; Bossone, Eduardo

doi:10.1378/chest.08-1260

Cited by 48 publications

(48 citation statements)

References 45 publications

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“…2,7 An analysis of the REVEAL Registry: Registry to Evaluate Early and Long-Term PAH Disease Management demonstrated that a significant proportion of patients with PAH experience depression at the time of diagnosis. 8 This may be the result of the long patient journey between the onset of their symptoms and a definitive diagnosis of PAH, which could exhaust their psychological reserves.…”

Section: The Psychological Burden Of Pahmentioning

confidence: 99%

Improving Patient Care in Pulmonary Arterial Hypertension: Addressing Psychosocial Issues

Tsangaris

2014

J of Clinical Hypertension

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PAH is a rare, incurable, and progressive disease caused by an increase in pulmonary vascular resistance at the precapillary level.1-3 In a survey of national registries and expert centers in France and Scotland, the prevalence of all types of PAH was reported as being approximately 15 to 50 cases per million, with an incidence of idiopathic PAH of 6.5 to 25 cases per million. 2,4 There is a strong female preponderance and a higher rate of prevalence observed in high-risk groups, such as patients with systemic sclerosis.2 The estimated 1-year mortality rate ranges from 8% to 10% in patients with idiopathic, familial/heritable, or anorexigen-associated PAH. 5 An increase in mean pulmonary arterial pressure to at least 25 mm Hg at rest, together with a mean pulmonary capillary wedge pressure of <15 mm Hg, are the defining features of PAH.2 As PAH progresses, symptoms become exacerbated owing to restricted cardiac output through the pulmonary arteries and concomitant right heart failure, which induces common symptoms of PAH including breathlessness, fatigue, weakness, and angina.

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Section: The Psychological Burden Of Pahmentioning

confidence: 99%

Improving Patient Care in Pulmonary Arterial Hypertension: Addressing Psychosocial Issues

Tsangaris

2014

J of Clinical Hypertension

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“…Measurements of health-related quality of life (QoL) in PAH patients have been reported in a number of studies, and many of these have shown severe impairments in several or all dimensions [7]. However, the majority of these studies used instruments not specifically developed for PAH, and standard generic QoL measures or tools specific to lung or heart disease may not properly reflect the clinical status of PAH [7,8].…”

Section: Introductionmentioning

confidence: 99%

Understanding the impact of pulmonary arterial hypertension on patients' and carers' lives

Guillevin¹,

Armstrong²,

Aldrighetti³

et al. 2013

Eur Respir Rev

133

214

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Pulmonary arterial hypertension (PAH) is a rare, debilitating and rapidly progressive disease. Although there have been important medical advances in PAH management, the search for a cure continues. Despite an increased understanding of the disease, data on the wider effect of PAH on patients and carers, beyond the clinical symptoms, are still limited. In order to explore this, a large-scale international survey investigated four key areas affected by PAH (physical and practical, emotional, social, and information needs) and provides new insight into patients' and carers' experiences of living with the disease. The results from the survey highlight not only the limited ability of patients to carry out everyday tasks, but also the financial impact and social isolation experienced by both patients and carers. The study confirmed that a decline in a patient's World Health Organization functional class, which indicates an increase in clinical severity of the disease, is associated with greater limitations. Results from the survey demonstrate the need for multidisciplinary PAH management and a comprehensive standard of care to assess and improve all aspects of well-being for both patients and carers. In addition, they underline the need for updated PAH guidelines that address these needs. @ERSpublications PAH has a profound impact on numerous aspects of patients' and carers' lives http://ow.ly/pWWYf This article has supplementary material available from err.ersjournals.comFull survey results, along with a call to action, are available at www.phaeurope.org/projects-activities/pah-patient-andcarer-survey

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“…These results mostly come from short-term studies with questionnaires that were either developed for use in patient populations with diseases other than PAH, such as the MLHFQ [80], or in mixed patient populations, such as that used to develop the Cambridge Pulmonary Hypertension Outcome Review (CAMPHOR) that included patients with PAH, chronic thromboembolic pulmonary hypertension and other types of pulmonary hypertension [81]. Therefore, care must be taken when interpreting results where such generic questionnaires have been used, given that they lack the specificity needed to address the HRQoL issues that are of importance to patients with PAH [82,83].…”

Section: Improving Quality Of Lifementioning

confidence: 99%

Physicians’ and patients’ expectations of therapies for pulmonary arterial hypertension: where do they meet?

2014

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In recent years, many new, effective therapies for pulmonary arterial hypertension (PAH) have become available and are widely used, yet the long-term prognosis for patients with PAH remains poor. In the absence of a cure, physicians' expectations of PAH-specific therapies are to: 1) improve patients' symptoms and functional capacity; 2) slow disease progression; and 3) improve survival. However, patients with PAH may prioritise other more tangible needs, such as improvements in their ability to carry out their daily tasks and increase their quality of life. Patients with PAH have also called out for social and emotional support from their physicians, caregivers, families and patient associations. Therefore, it is necessary that clinical trials of PAH-specific treatments include end-points that are meaningful to both patients and physicians, and that a multidisciplinary approach to the management of patients with PAH takes into consideration the broader aspects of patients' and caregivers' needs and wishes beyond simple physiological measurements. @ERSpublications Treatment and management goals for pulmonary arterial hypertension: meeting both physicians and patients expectations http://ow.ly/Cuezv

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Evaluating Health-Related Quality of Life, Work Ability, and Disability in Pulmonary Arterial Hypertension

Cited by 48 publications

References 45 publications

Improving Patient Care in Pulmonary Arterial Hypertension: Addressing Psychosocial Issues

Improving Patient Care in Pulmonary Arterial Hypertension: Addressing Psychosocial Issues

Understanding the impact of pulmonary arterial hypertension on patients' and carers' lives

Physicians’ and patients’ expectations of therapies for pulmonary arterial hypertension: where do they meet?

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