How Informed Are German Patients with Pulmonary Sarcoidosis about Their Disease?

Abstract

<b><i>Background:</i></b> Sarcoidosis is a multisystemic disease with a heterogenous course of disease. Comprehensive information about the complexity and treatment indications is essential for improving patient knowledge and adhering to therapy. <b><i>Objectives:</i></b> The aim of our study was to investigate the level and resources of information in patients with sarcoidosis and to analyze differences in patient subgroups including age and gender. <b><i>Methods:</i></b> We conducted a questionnaire-based online survey in Germany and three semi-structured focus group interviews. The interviews were evaluated independently by two investigators using a structured qualitative content analysis. <b><i>Results:</i></b> A total of 402 completed questionnaires were analyzed, 65.8% of participants were women, and the mean age was 53 years. The majority of patients felt well informed about their disease in general (59.4%), but 40.6% were inadequately informed. The most relevant information gaps related to the future perspective (70.6%) as well as fatigue and diffuse pain (63.9%). Most patients received information from their treating pulmonologist (72.1%). 94% used the internet, especially homepages of patient support groups (75.2%). Male participants more often reported being well informed about their disease and were more satisfied with the information (<i>p</i> = 0.001). During the interviews, patients expressed their wish for more comprehensive information and highlighted the importance of psychological co-care as well as the future perspective. <b><i>Conclusions:</i></b> A relevant proportion of patients with sarcoidosis are inadequately informed about their own disease, particularly with regard to factors impeding quality of life such as fatigue. Efforts are needed to improve the level and quality of information.

Is the internet a sufficient source of information on sarcoidosis?

“…These included the acute vs. chronic course of the disease, screening for extrapulmonary disease, and the common symptom of diffuse body pain. These findings are consistent with a German survey, where relevant information gaps included fatigue and diffuse pain as well as the different courses of disease ( 17 ). Additionally, information gaps included the management of sarcoidosis and were further accentuated by reporting of wrong or misleading facts that primarily concerned false information regarding the necessity and duration of corticosteroid therapy as well as treatment indications.…”

“…This is highly relevant because the internet presents a common source of health information to patients. In a German survey-based study, 94% of patients with sarcoidosis used the internet to obtain information on their disease ( 17 ). To the best of our knowledge, this has not been studied to date.…”

“…This lack of reliability poses a special challenge to patients who may have greater difficulty recognizing risk and bias in online information ( 7 ). Thus, 63.4% of sarcoidosis patients reported the internet to be a reliable source of information despite the limitations of this source ( 17 ).…”