Patient-Reported Outcomes

Health-Related Quality of Life (HRQoL)

Health-Related Quality of Life (HRQoL) is an important consideration in the management of IPF as it has a substantial impact on patients with IPF. A patient's perceived quality of life provides insight into disease progression that cannot be derived from clinical measures of pulmonary function alone.14 Several studies have evaluated HRQoL in patients with IPF. These analyses assessed the main contributing factors to quality of life (dyspnea) and showed a negative impact of IPF across many of the domains tested, including but not limited to physical functioning, energy, symptoms, and level of independence.282930313233

Instruments that have been utilized to assess quality of life in IPF include142930313234:

  • Chronic Respiratory Questionnaire (CRQ)
  • Saint George's Respiratory Questionnaire (SGRQ)
  • Medical Outcomes Study 36-Item Short-Form (SF-36) instrument
  • Quality of Well-Being (QWB) instrument
  • World Health Organization Quality of Life Assessment 100-Item (WHOQOL-100) instrument

While the instruments listed above may provide meaningful information with regard to HRQoL, there are currently no IPF-specific instruments available.714 Therefore, questions remain about whether existing tools are sensitive enough to accurately measure treatment effects in IPF.714 Despite this, objective monitoring of dyspnea is encouraged to assess disease progression; however the specific instrument to use is not described in the ATS/ERS/JRS/ALAT guidelines.1

A summary of these instruments and a review of specific areas assessed by each are provided in Table 2.

Table 2.
Instruments utilized to assess quality of life in patients with idiopathic pulmonary fibrosis. Adapted from Swigris JJ et al. Chest. 2005;127:284-294.

Instrument Type of Instrument Example of Domains Assessed
Specific to obstructive lung disease
  • Dyspnea during activities
  • Fatigue
  • Emotional function
  • Mastery (eg, confidence in dealing with respiratory illness)
Specific to obstructive lung disease
  • Symptoms
  • Activity
  • Impacts (eg, on employment, inducing fear, panic, or embarrassment)
  • Physical functioning
  • Role-physical (eg, decreased time spent on or difficulty with usual physical activities)
  • Bodily pain
  • General health
  • Vitality
  • Social functioning
  • Role-emotional (eg, extent to which emotional problems impact work or activities)
  • Mental health
  • Symptoms/problems
  • Mobility
  • Physical activity
  • Social activity
  • Physical health
  • Psychological (eg, self-esteem, body image)
  • Level of independence
  • Social relations
  • Environment (eg, financial resources, freedom, physical safety and security)
  • Spirituality/religion/beliefs

Content contributed by:
Ryan Hadley, MD
University of Michigan