Idiopathic pulmonary fibrosis (IPF) negatively affects a person’s health-related quality of life (HRQoL), especially their physical health, a review study suggests. Patients’ age and disease severity also were found to have an impact on HRQoL.
The study, “Health-related quality of life of patients with idiopathic pulmonary fibrosis: a systematic review and meta-analysis,” was published in the journal European Respiratory Review.
HRQoL is determined by several factors, including the progression of the disease and the way patients perceive and cope with it.
People with IPF often experience a wide range of symptoms — including cough, breathlessness, fatigue and weight loss — that can affect their daily life. Limited treatment options are available because there are few therapies to reduce disease progression.
Several clinical trials evaluating new emerging therapies are ongoing; however, only a few consider their impact on HRQoL.
In order to determine the impact of IPF’s symptoms and treatments on HRQoL and to help develop a better approach in the management and care of people with the disease, a team in Australia conducted a literature review. The review included 134 studies, mostly from Europe, North America and Asia.
The majority of the studies selected included people with a mean age of 60 or older. The most-used instruments to assess HRQoL were the St George’s Respiratory Questionnaire (SGRQ), Short Form 36 (SF36), EuroQoL (EQ5D) and ILD-specific King’s Brief Interstitial Lung Disease questionnaire (KBILD).
The SGRQ is a specific instrument for obstructive lung disease in which physical (activity and symptoms) and emotional wellness (impact) are assessed. The score ranges from 0 to 100 — the higher the score, the worse the health status.
Researchers found a mean score of 57.13 for activity, 50.82 for symptoms, and 37.0 for the impact, suggesting that physical wellness was more affected than emotional health. The total mean score of all domains combined was 44.72.
Disease severity and age were noted to have an impact on the SGRQ score. The mean score worsened with increasing disease severity, and “the worst scores were recorded in the youngest age group” the researchers wrote.
“One plausible explanation is that younger age groups may still be employed and more socially active so the limitations imposed by chronic disease may be more restrictively impactive than for older persons,” they wrote.
Another HRQoL instrument was the SF36. This tool also evaluates the physical and mental components and both are measured on a 0 to 100 scale, in which lower scores indicate a worse scenario.
A score of 37 was obtained for the physical component, while the mental health component had a score of 50.18. As observed with SGRQ, mental wellness had a better score than physical health. These results also were affected by the progression of the disease, and younger people had a worse SF36 score.
“Given the natural history of the disease and the main symptoms, dyspnea [breathlessness], cough and fatigue, the larger deficit in the physical health domains is expected,” the team wrote.
EQ5D was another HRQoL assessment tool. It comprises two measures: the visual analogue scale (VAS), which measures the intensity of the symptoms and ranges from 0 to 100 (the higher the score, the better the HRQoL); and the health state utility value (HSUV), which is the strength of preference for a given health state, ranging from state 0 (“death”) and 1 (“full health”).
The data showed a 65.66 score for VAS and 0.73 for the HSUV.
This tool allowed the researchers to compare these values with those of the general population. A HSUV of 0.825 was observed in the general population, meaning IPF patients have poorer HRQoL.
The KBILD assessment considers psychological, breathlessness and chest symptoms. The scores range from 0 to 100; the higher the score the better the result.
In this study, a mean total score of 58.38 for KBILD was obtained. The results also showed a reduction in this value with increasing disease severity. As with other assessment tools, younger people also showed a worse score.
“Our analysis of the KBILD, albeit limited by the number of studies, further confirmed that IPF had a detrimental effect on HRQoL,” researchers wrote.
Overall, these instruments showed that the impact of IPF is due not only to respiratory limits, but also to physical, emotional and social functioning. As a result, the authors believe healthcare strategies should not be focused solely on clinical results.
“Emphasis should also be placed on strategies to improve quality of life of people living with the disease with a more holistic approach to care,” the team wrote.
Furthermore, the “study also demonstrated that a diverse number of instruments are used to evaluate HRQoL. In view of this diversity, a standardised approach to measurement of HRQoL for IPF is important to ensure that comparisons made are reliable,” the team added.
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