Health illiteracy among patients with chronic lung disease entering pulmonary rehabilitation and their resident loved ones: prevalence and relationship with health outcomes: A pilot study.

A pilot observational study among patients with a chronic lung disease referred for PR to CIRO (the Netherlands) and their resident loved ones will be conducted. Patients are eligible when diagnosed with chronic lung disease (defined as chronic disease of the airways and other structures of the lungs, including but not limited to: asthma, chronic obstructive pulmonary disease (COPD), pulmonary hypertension, interstitial lung disease, and bronchiectasis, (WHO, 2007)), and are referred for a pre-rehabilitation assessment to CIRO. We aim to include 120 patients and if available and willing to participate, their resident loved ones. Patients will be asked to complete the Dutch 16-item European Health Literacy Survey Questionnaire (HLS-EU-Q), Montreal Cognitive Assessment and REALM-D during their pre-habilitation assessment. Relevant patient characteristics (including but not limited to demographics, disease severity, smoking status, comorbidities) and PR outcomes (including modified Medical Research Council (mMRC) dyspnea score, COPD Assessment Test (CAT), Hospital Anxiety and Depression Scale (HADS), degree of self-management, and 6-minute walking distance) are collected as part of the clinical routine. In addition, available resident loved ones will be asked to complete the HLS-EU-Q as well as a short questionnaire including demographics and self-reported morbidities. The current project results in: 1) knowledge concerning the prevalence of HI among patients with COPD entering PR and their resident loved ones; preliminary knowledge concerning the impact of HI on PR outcomes. This knowledge is needed to optimize education and self-management interventions offered as part of PR.

We hypothesize that health illiteracy (HI) is prevalent among approximately 50% of the patients with chronic lung diseases, referred for PR (Puente-Maestu et al., 2016; Kale et al., 2015; Lee et al., 2009). Moreover, it is expected that HI is common amongst their resident loved ones. Finally, we expect that outcomes of PR are negatively affected by the prevalence of HI.

Primary outcomes, background characteristics and the Montreal Cognitive assessment are assessed during a three-day baseline assessment.

The other secondary outcomes are assessed during a three-day baseline assessment and two-day outcome assessment.

Degree of self-management was assessed by the start and ending of pulmonary rehabilitation.

Not applicable, observational study