Considerations When Selecting Patient-Reported Outcome Measures for Assessment of Health-Related Quality of Life in Patients With Pulmonary Hypertension

Yarlas, Aaron; Mathai, Stephen C.; Nathan, Steven D.; DuBrock, Hilary M.; Morland, Kellie; Anderson, N.; Kosinski, Mark; Lin, Xiaochen; Classi, Peter

doi:10.1016/j.chest.2022.08.2206

Cited by 8 publications

(16 citation statements)

References 66 publications

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“…However, when using a HRQoL like CAMPHOR with a 1day recall, it might not reflect that some days are better, and some days are worse for the patient. 11 Self-assessed HRQoL provide an important mean to facilitate the dialog between the patient and the healthcare professional to understand the patients burden of disease. It can help identify questions that should be asked to help maintain or increase the patient's well-being and functional capacity and to support patients to pay attention to important symptoms.…”

Section: Discussionmentioning

confidence: 99%

Change in health‐related quality of life at early follow‐up in patients with pulmonary arterial hypertension and chronic thromboembolic pulmonary hypertension

Ivarsson,

Johansson,

Kjellström

2024

Pulm. circ.

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Symptoms associated with pulmonary arterial hypertension (PAH) or chronic thromboembolic pulmonary hypertension (CTEPH) impact patient's health‐related quality of life (HRQoL). Studies on change and if a minimal clinically important difference (MCID) in HRQoL is reached within a year after diagnosis are lacking. The aim was to investigate the change in HRQoL as well as the proportion of patients that reached MCID at an early postdiagnosis visit. The study included adult patients from the Swedish PAH & CTEPH registry, diagnosed 2008–2021, with Cambridge Pulmonary Hypertension Outcome Review (CAMPHOR) at time of diagnosis and a follow‐up. Data were analyzed as total population and dichotomized for sex, age (<65 vs. ≥65 years), time of diagnosis (≤2015 vs. >2015) and pulmonary hypertension (PH) subgroups. Data reported as median, interquartile range (IQR), and proportions (%). There were 151 patients (PAH = 119, CTEPH = 32) with an available CAMPHOR score at diagnosis and follow‐up. CAMPHOR total sum was 31 (IQR: 21–43) and 25 (14–36); (p < 0.001) at diagnosis and follow‐up, respectively. At follow‐up, 56% had reached MCID in total sum, while for domains activity, symptoms, and QoL 27%, 33%, and 39% reached MCID, respectively. These results were independent of PH subgroup, diagnosis before or after 2015 and sex. Age below 65 years was related to improvements in activity and worsening of symptoms. In conclusion on a group level, improvements in CAMPHOR total sum as well as all domains were seen in the first year after diagnosis, however, only slightly more than half of the patients reached MCID for CAMPHOR total sum.

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Section: Discussionmentioning

confidence: 99%

Change in health‐related quality of life at early follow‐up in patients with pulmonary arterial hypertension and chronic thromboembolic pulmonary hypertension

Ivarsson,

Johansson,

Kjellström

2024

Pulm. circ.

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“…The European Society of Cardiology and the European Respiratory Society (ERS) classified PH into five major clinical subtypes based on cause: (1) pulmonary arterial hypertension (PAH); (2) PH associated with left heart disease; (3) PH associated with chronic lung diseases or hypoxia (PH‐CLD); (4) PH associated with chronic thromboembolic (CTEPH) disease; and (5) PH with unclear or multifactorial mechanisms (Humbert et al, 2022). Although the clinical manifestations of PH vary by etiology, the main symptoms of progressive dyspnoea, fatigue, chest pain, and weakness are prevalent in all subtypes (Yarlas et al, 2022). Additionally, as the disease progresses, death can occur.…”

Section: Introductionmentioning

confidence: 99%

“…High symptom burden and high mortality have been the consensus of previous studies. However, with advanced catheter and surgical treatments, the 3‐year survival rate for PH patients can be significantly increased to 96% (Takita et al, 2021), which has brought significant focus to health‐related quality of life (QoL) (Yarlas et al, 2022). QoL is a multidimensional concept regarding the individual's status in life in the context of the culture and value system in which they live and can reflect a patient's overall health status (Ma et al, 2022; Yarlas et al, 2022).…”

Section: Introductionmentioning

confidence: 99%

“…However, with advanced catheter and surgical treatments, the 3‐year survival rate for PH patients can be significantly increased to 96% (Takita et al, 2021), which has brought significant focus to health‐related quality of life (QoL) (Yarlas et al, 2022). QoL is a multidimensional concept regarding the individual's status in life in the context of the culture and value system in which they live and can reflect a patient's overall health status (Ma et al, 2022; Yarlas et al, 2022). A recent review has emphasized the importance of assessing QoL to understand the long‐term impact of PH and its treatment on PH survivors, while noting that PH imposes a considerable QoL burden on patients (Yarlas et al, 2022).…”

Section: Introductionmentioning

confidence: 99%

“…QoL is a multidimensional concept regarding the individual's status in life in the context of the culture and value system in which they live and can reflect a patient's overall health status (Ma et al, 2022; Yarlas et al, 2022). A recent review has emphasized the importance of assessing QoL to understand the long‐term impact of PH and its treatment on PH survivors, while noting that PH imposes a considerable QoL burden on patients (Yarlas et al, 2022). Therefore, improving QoL is an important therapeutic goal for patients with PH (Halimi et al, 2021).…”

Section: Introductionmentioning

confidence: 99%

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Relationship between quality of life, fear of disease progression, and coping styles in patients with pulmonary hypertension: A network analysis

Wang,

Liu,

et al. 2023

Research in Nursing & Health

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A poor quality of life (QoL) in patients with pulmonary hypertension (PH) is often associated with emotional disturbances and the ability to cope. Little is known, however, about the intrinsic links among the QoL, fear of disease progression (FoP), and coping styles in patients with PH. The purpose of this study was to elucidate the relationships among QoL, FoP, and coping styles in patients with PH. We conducted a cross‐sectional survey of 247 patients from a tertiary hospital in Jinan, China and analyzed the relationships using network analysis. Participants completed the World Health Organization's Quality of Life Questionnaire, Fear of Disease Progression Questionnaire and Simple Coping Style Questionnaire during the survey period. The total QoL, positive coping, and negative coping scores were 46.55 ± 10.46, 31.75 ± 6.85, and 18.75 ± 4.66, respectively. The QoL psychological domain had the strongest centrality, deserving more attention than other domains. The coping styles were bridge nodes that connected the whole network, where negative coping and social family FoP, and positive coping and both social and psychological QoL had the strongest positive correlations. There were no significant sex‐based or age‐based differences in the networks. To improve QoL and psychological well‐being in people with PH, healthcare professionals must focus on issues beyond the patient's physical health. Specifically, they should focus on positive coping styles, while developing interventions to promote positive coping and reduce negative coping styles.

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Exploratory and confirmatory factor analysis of emPHasis‐10: The health‐related quality‐of‐life measure in pulmonary hypertension

Rawlings,

Gaskell,

Beail

et al. 2024

Pulm. circ.

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The emPHasis‐10 is a health‐related quality of life (HRQoL) unidimensional measure developed specifically for adults with pulmonary hypertension. The tool has excellent psychometric properties and is well used in research and clinical settings. Its factor structure has not been examined, which may help to identity a complimentary approach to using the measure to examine patient functioning. We performed an exploratory factor analysis (EFA) and confirmatory factor analysis (CFA) on a data set collected from 263 adults with PH recruited from a community setting. The EFA suggested the emPHasis‐10 consists of three underlying latent variables, which based on the loading of items, were termed “fatigue” (Items 3, 4, and 5), “independence” (Items 7, 8, 9, and 10), and “breathlessness” (Items 1, 2, and 6). All factors were found to have good internal consistency. “Independence” accounted for most of the variance (29%), followed by “breathlessness” (22%) and “fatigue” (19%). The CFA looked to confirm the fit of a three‐factor model. A higher‐order model was found to be the best fit consisting of HRQoL as a superordinate factor, for which the association between this factor and the 10 items was mediated through the three latent factors. Further analyses were performed testing the validity of the latent variables revealing all were significantly correlated with self‐reported measures of depression, anxiety, health‐anxiety, and dyspnea. Our analyses support the emPHasis‐10 as a measure of HRQoL, while also proposing the clinical utility of examining the three emergent factors, which could be used to glean additional insight into the respondent's functioning and inform care.

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Considerations When Selecting Patient-Reported Outcome Measures for Assessment of Health-Related Quality of Life in Patients With Pulmonary Hypertension

Cited by 8 publications

References 66 publications

Change in health‐related quality of life at early follow‐up in patients with pulmonary arterial hypertension and chronic thromboembolic pulmonary hypertension

Change in health‐related quality of life at early follow‐up in patients with pulmonary arterial hypertension and chronic thromboembolic pulmonary hypertension

Relationship between quality of life, fear of disease progression, and coping styles in patients with pulmonary hypertension: A network analysis

Exploratory and confirmatory factor analysis of emPHasis‐10: The health‐related quality‐of‐life measure in pulmonary hypertension

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