ABSTRACT
Research evidence indicates that meaning in life (MIL) is a meaningful outcome in individuals living with chronic illness, but evidence is lacking for chronic obstructive pulmonary disease (COPD). We hypothesized that MIL is independently associated with clinically meaningful outcomes for patients with COPD. We performed cross sectional analysis from a large cohort with moderate - severe COPD that participated in a home pulmonary rehabilitation study. MIL was measured using the Meaning in Life Questionnaire (MLQ), with domains of Presence and Search. The study included 340 participants: mean age 69 y/o (SD 9.4), 55.3% female, FEV1% 44.3% (SD 19.4) and mMRC dyspnea scale of 2.69 (SD 0.84). Patients with high MLQ Presence (vs low score) had meaningfully better scores (beyond the MCID) across all Chronic Respiratory Questionnaire domains Dyspnea, Fatigue, Emotions and Mastery (p ≤ 0.02), self-management (p ≤ 0.001), social support (p ≤ 0.001); anxiety (p ≤ 0.001) and depression (p ≤ 0.01) scores. When adjusting for age, sex, FEV1, mMRC, social support, and anxiety, MLQ Presence was independently associated with CRQ domains Fatigue, Emotions, and self-management (p ≤ 0.01). MLQ Search was independently associated with CRQ Dyspnea, Fatigue, and Mastery (p < 0.05). In patients with COPD, the perception that life has meaning or the willingness to search for MIL, is associated with the outcomes that patients consider most important. Our results are novel as MIL is a potentially modifiable outcome that could complement person-centered conversations during clinical visits, pulmonary rehabilitation, and health coaching.
ABSTRACT
Background: Patient-reported outcome measures (PROMs) may provide clinicians and researchers with direct insights into disease impact and patient well-being. We assessed whether selected PROMs and their domains are associated with baseline and longitudinal changes in lung function and can predict mortality in patients with fibrotic interstitial lung disease (f-ILD). Methods: A single-centre prospective study of adult patients with f-ILD enrolled over 3â years was conducted assessing baseline and short-term changes in PROMs. Three questionnaires, the modified Medical Research Council dyspnoea scale (mMRC), Chronic Respiratory Questionnaire (CRQ) and Self-Management Ability Scale (SMAS-30) were administered at planned intervals and assessed for their association with baseline clinical findings, change in lung function (% predicted forced vital capacity (FVC%) and diffusion capacity of the lung for carbon monoxide (DLCO%)) and all-cause mortality. Results: 199 patients were enrolled with a mean PROM follow-up of 9.6â months. When stratified by FVC% quartiles at presentation, lower mMRC (less dyspnoea), higher CRQ Physical and Emotional domain (better health-related quality of life) and higher total SMAS-30 scores (better self-management ability) were associated with higher FVC%. Short-term changes in all three PROMs appeared to be associated with changes in FVC% and DLCO%. Adjusted and unadjusted baseline and serial PROM changes were also predictive of mortality. Conclusions: Baseline and serial assessments of PROMs were associated with changes in lung function and predicted death in patients with f-ILD. PROMs may strengthen comprehensive assessments of disease impact in clinical practice as well as support patient-centred outcomes in research.
ABSTRACT
PURPOSE: Pulmonary rehabilitation is a behavioral modification intervention shown to improve exercise tolerance and patient-reported quality of life in patients with fibrotic interstitial lung disease. Home-based rehabilitation may provide easier access for those who struggle to complete center-based rehabilitation programs due to increased symptom burden or frailty. METHODS: We present the quantitative and qualitative findings of a pilot study of 21 patients with fibrotic interstitial lung disease who participated in a 12-wk home-based pulmonary rehabilitation program with activity monitoring and health coaching. RESULTS: Pre- and post-intervention patient-reported outcome questionnaires suggested improvements in dyspnea and respiratory-related quality of life but were underpowered to meet statistical significance. Half had increases in mean daily step counts while a quarter declined because of disease progression. Qualitative analysis of semistructured participant interviews suggested a significant baseline disease burden with related secondary impacts, including anxiety regarding disease progression and prognosis. Many who participated had no specific program expectations or self-determined goals but still found the program impactful, particularly on their abilities to adapt and cope with the disease. CONCLUSION: Our study suggests feasibility in a diverse set of patients with varying severity and diagnostic subtypes. We also provide quantitative and qualitative aspects of program impact on patient well-being and highlight the complex interaction between measured physical and self-reported outcomes and disease experience.
