COPD management : exploring conditions for, and experiences of, evidence-based care and eHealth

Sammanfattning: Background: Chronic obstructive pulmonary disease (COPD) is one of the leading causes of morbidity and premature death worldwide. It is a systemic disease that affects the whole person, although dyspnea is the mostprominent symptom. COPD is expected to increase in prevalence during the coming 40 years due to an increase in relevant risk behaviors, and today over 230 million people suffer from COPD worldwide. A common extra pulmonary manifestation of the disease is quadriceps dysfunction, where muscle strength, power, and/or endurance properties are reducedand affect everyday function. However, reference values and valid reference equations are needed to evaluate and offer appropriate treatment for quadriceps dysfunction. Moreover, a crucial part of COPD management is pulmonary rehabilitation, e.g., where disease management and strategies are conveyed and put into practice. However, due to knowledge gaps within health care, we need to develop new ways of informing and supporting people with COPD. One way is through eHealth, although these sources must be evaluated so that they constructively contribute to health care.Aim: The overall aim of this thesis is to explore the conditions for, and perspectives on, evidence-based care and eHealth in COPD management. This aim is twofold. The first is to explore the experiences, interactions, and context of using eHealth tools in managing COPD in primary carefrom the perspective of people with COPD and health care professionals (HCPs). The second is to develop reference values and equations for quadriceps function.Method: This dissertation contains three papers (Papers I, II, and III) based on individual interviews analyzed with qualitative research methods in which an eHealth tool, the COPD Web, is evaluated. Lastly, it contains one paper(Paper IV) based on an international multicenter data collection analyzed with quantitative research methods.Results: Paper I: The findings indicate that the level of motivation, comfortability with IT tools, and health literacy seem to affect the usage of an eHealth tool over time. Some level of use and the passage of time appears to be needed to perceive gained benefits from the eHealth tool. In short, this suggests that eHealth tools such as the COPD Web can be suitable for supporting COPD-specific self-management skills. Paper II: The findings indicated that using the COPD Web provided knowledge support for HCPs and improved the quality of care for people with COPD. However, it seems some barriers need to be addressed to successfully implement the eHealth tool in daily practice. Paper III: Findings lead to the theme “Perceiving enough control to enable action”, which suggests that having or perceiving a certain amount of control is essential to maintain or increase the level of physical activity when one has COPD and uses an eHealth tool. Paper IV: The findings indicate that for people without COPD, age, sex, height, and BMI explained 50 – 70 % of the variance of quadriceps strength, endurance, and power. Our findings also suggested moderate construct validity of the reference equations in people with COPD.Conclusion: To conclude, the web-based eHealth tool, the COPD Web, seems to support and help when self-managing COPD and treating people with COPD. There are still barriers for people with COPD to use a web-based eHealth tool, and we probably ought to screen people with COPD for health literacy before discussing and deciding on PR strategies with them. There are still barriers to implementing new tools in the health care setting, which should need time, support, and education to circumvent. Findings regarding the developed reference values and equations for quadriceps strength, power, and endurance will make further tailoring of the treatment regime for the individual possible. As such, this, too, should assist in improving disease management, although the construct validity of the equations was moderate.