What Happens to Patients in the First Year After ILD Diagnosis?


Two studies presented at the Virtual 2020 ISPOR conference examined health care resource utilization and health-related quality of life in interstitial lung disease.

Patients with interstitial lung disease (ILD) experience more health care resource utilization as well as a decline in health-related quality of life (HRQL) in their first year following diagnosis, according to 2 studies presented at the Virtual 2020 ISPOR conference.

In the first paper, investigators from the United States and Germany examined health care resource utilization and related costs for patients with progressive fibrosing ILD (PF-ILD).1 To do this, they analyzed IBM’s MarketScan claims data between October 2011 and September 2015 in adult patients with fibrosing ILD. The patients in the analysis had a new lung fibrosis claim and a second claim between 30 and 365 days later. The second claim was the date of the diagnosis, the authors wrote, and their total health care resource utilization was measured during the baseline period (before the PF-ILD diagnosis) and 1 year after the PF-ILD diagnosis.

The study authors found that 128,231 patients had a lung fibrosis claim, and 18% (23,577) had a second claim that required inclusion in the analysis. Of those, 14,722 patients had PF-ILD.

There was a higher mean number of outpatient visits, which included services during the 1-year follow up compared with the baseline period, the authors found. The mean number of inpatient admissions was 0.69 during follow-up compared with 0.51 during baseline, the authors added. They said that there were more intensive care unit admissions and respiratory-related hospitalizations.

Costs were also higher during follow-up: $54,215 compared to $37,340 during baseline, the authors determined. This was a similar finding across both inpatient costs (follow-up: $20,746 vs. baseline: $14,883) and outpatient costs (follow-up: $24,711 vs. baseline: $17,075), the authors found.

“Among patients with PF-ILD, health care resource utilization and related costs, particularly relating to outpatient visits, were higher during 1-year follow-up than the baseline period,” the study authors wrote. “This study provides much-needed insights into health care resource utilization and costs in patients with a progressive phenotype of chronic fibrosing ILD.”

In the second study, investigators from Germany wanted to identify predictors for decline in health-related quality of life (HRQL) across 1 year in ILD patients. Predictors have not been characterized, though it is known that HRQL is impaired for these patients, they said.

They used the longitudinal data from 194 ILD patients recruited from 2 ILD centers. The investigators asked patients to complete a questionnaire that asked about psychological impact, chest symptoms, and breathlessness and activities with the scores ranging from zero, the worst HRQL, and 100, the best HRQL.

Once they found patients who experienced clinically meaningful HRQL decline, the investigators dug into various patient characteristics that could be predictors of HRQL deterioration, they explained.

Mean HRQL “hardly changed between baseline and 12-months follow-up,” the authors wrote. However, 29% of patients experienced clinically relevant deterioration in the breathlessness and activities category, while another 29% said their chest symptoms declined and 28% said they were psychologically impacted.

The investigators found that lower baseline carbon monoxide diffusing capacity percentage was associated with HRQL deterioration in breathlessness and activities and chest symptoms. They said that forced vital capacity was a predictor for deterioration in psychological impact. Another factor associated with deterioration in the psychological impact category was increasing age, the study authors added.

“A third of ILD patients experienced a clinically relevant HRQL deterioration in 12 months, mainly predicted by lung function baseline values,” the authors concluded.


1. Olson A, Hartmann N, Patnaik P, et al. Healthcare resource utilization and related costs in progressive fibrosing interstitial lung diseases (ILDS). Presented at: ISPOR 2020; May 18-20, 2020; Abstract PRS25.

2. Maqhuzu PN, Szentes B, Kreuter M, et al. predictors of health-related quality of life decline in interstitial lung disease using the K-BILD questionnaire.

Presented at: ISPOR 2020; May 18-20, 2020; Abstract PRS62.

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