Relationship Between Patient-Reported Outcome Measures and the Severity of Chronic Obstructive Pulmonary Disease in the Context of an Innovative Digitally Supported 24-Hour Service: Longitudinal Study

Abstract

Background Individuals with chronic obstructive pulmonary disease (COPD) live with the burden of a progressive life-threatening condition that is often accompanied by anxiety and depression. The severity of the condition is usually considered from a clinical perspective and characterized according to the Global Initiative for Chronic Obstructive Lung Disease (GOLD) classification of severity (1-4) and a risk assessment (A through D) that focuses on the patient’s symptoms and number of exacerbations, but information about perceived health or ability to manage the condition are rarely included. Objective We evaluated 3 patient-reported outcome measurements (PROMs) to examine how these can be used to report on individuals with COPD who were supported by a digitally assisted intervention that aims to increase the patient’s management of their condition to improve their well-being. Methods A total of 93 individuals with COPD were enrolled. At baseline and after 6 and 12 months, we measured self-reported self-management (Health Education Impact Questionnaire, heiQ) and health literacy (Health Literacy Questionnaire, HLQ), and physical and mental health (Short Form-36, SF-36) PROMs were collected. The scores of the 19 PROM dimensions were related to COPD severity, that is, GOLD risk assessment, pulmonary function at entry, and number of exacerbations of a period up to 12 months. The initial PROM scores were also compared with pulmonary function, exacerbations, and GOLD risk assessment to predict the number of contacts within the first 90 days. Results At baseline, 2 dimensions from heiQ and SF-36 Physical health differed significantly between GOLD risk factor groups, indicating more distress and poorer attitudes and health status with increasing severity (GOLD risk assessment). Pulmonary function (FEV1) was negatively associated with the severity of the condition. After 6 months, we observed an increase in heiQ6 (skill and technique acquisition) and a reduction in emotional distress. The latter effect persisted after 12 months, where heiQ4 (self-monitoring and insight) also increased. HLQ3 (actively managing my health) decreased after 6 and 12 months. The number of exacerbations and the GOLD risk factor assessment predicted the number of contacts during the first 90 days. Furthermore, 2 of the PROMS heiQ6 (skill and technique acquisition) and HLQ8 (ability to find good health information) evaluated at baseline were associated with the number of contacts within the first 90 after enrollment. The pulmonary function was not associated with the number of contacts. Conclusions Our data suggest that selected dimensions from HLQ, heiQ, and SF-36 can be used as PROMs in relation to COPD to provide researchers and clinicians with greater insight into how this condition affects individuals’ ability to understand and manage their condition and perception of their physical and mental health. The PROMs...

Revealing the Nature of Chronic Obstructive Pulmonary Disease Using Self-tracking and Analysis of Contact Patterns: Longitudinal Study

“…Our results are in accordance with our previous finding that the participants’ emotional distress decreases over time [ 25 ]. The reduced number of contacts to the RCC may also reflect the finding that the participants reported a perception of being less active in managing their condition [ 25 ].…”

“…Our results are in accordance with our previous finding that the participants’ emotional distress decreases over time [ 25 ]. The reduced number of contacts to the RCC may also reflect the finding that the participants reported a perception of being less active in managing their condition [ 25 ]. Based on both the previous findings and the number of contacts, will we hypothesize that the ECM living lab environment and service ecosystem contributes to the participants ability to better manage the COPD and related challenges.…”

“…At entry, all participants were registered with baseline data including age, sex, heart rate, oxygen saturation, forced expiratory volume for 1 second (FEV 1 ), and a clinical examination [ 25 ]. Based on these data, participants were classified according to the previous GOLD guidelines from 2011 [ 26 ], as the study was planned in 2013.…”

“…In an attempt to demonstrate how these ideas and potentials can be realized, we have developed a new person-centered service model: the Epital Care Model (ECM). We have tested the ECM in a living lab [ 24 ] and evaluated potential candidates for PROs gathered by psychometric validated instruments focusing on self-management, health literacy, and physical and mental well-being as well as clinical parameters [ 25 ]. In this study, we report on the second part, in which we, based on a newly developed algorithm and setting (to be reported elsewhere), are able to evaluate how PROs relating to the clinical condition can be used to understand the actual needs of the patient and needs of resources required from the ECM living lab to help the patient return to their habitual condition.…”

Patients’ Health Literacy in Rehabilitation: Comparison between the Estimation of Patients and Health Care Professionals

“…Nonetheless, the maintenance of these changes needs to be determined. Other longitudinal studies related to individuals with chronic obstructive pulmonary disease have shown that on scale 3, the main scores decreased after 6 and 12 months [ 28 ]. Scales 1, 4, 5, 8, and 9 did not significantly differ between T0 and T1.…”