Buschulte K.a· Höger P.a· Ganter C.a· Wijsenbeek M.b· Kahn N.a· Kriegsmann K.c· Wilkens F.M.a· Polke M.a· El-Hadi S.a· Lederer C.a· Herth F.J.a· Kreuter M.a

Author affiliations

aCenter for Interstitial and Rare Lung Diseases, Pneumology and Respiratory Critical Care Medicine, Thoraxklinik, University of Heidelberg, German Center for Lung Research (DZL), Heidelberg, Germany
bCenter for Interstitial Lung Diseases and Sarcoidosis, Department of Respiratory Medicine, Erasmus MC-University Medical, Center Rotterdam, Rotterdam, The Netherlands
cDepartment of Hematology, Oncology and Rheumatology, University Hospital Heidelberg, Heidelberg, Germany

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Article / Publication Details

Received: December 04, 2022
Accepted: February 20, 2023
Published online: April 13, 2023

Number of Print Pages: 9
Number of Figures: 2
Number of Tables: 1

ISSN: 0025-7931 (Print)
eISSN: 1423-0356 (Online)

For additional information: https://www.karger.com/RES

Abstract

Background: 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. Objectives: 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. Methods: 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. Results: 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 (p = 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. Conclusions: 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.

© 2023 S. Karger AG, Basel

References Belperio JA, Shaikh F, Abtin FG, Fishbein MC, Weigt SS, Saggar R, et al. Diagnosis and treatment of pulmonary sarcoidosis: a review. JAMA. 2022 Mar 1;327(9):856–67. Arkema EV, Cozier YC. Epidemiology of sarcoidosis: current findings and future directions. Ther Adv Chronic Dis. 2018 Aug 24;9(11):227–40. Baughman RP, Valeyre D, Korsten P, Mathioudakis AG, Wuyts WA, Wells A, et al. ERS clinical practice guidelines on treatment of sarcoidosis. Eur Respir J. 2021 Dec 16;58(6):2004079. Grunewald J, Grutters JC, Arkema EV, Saketkoo LA, Moller DR, Muller-Quernheim J. Sarcoidosis. Nat Rev Dis Primers. 2019 Jul 4;5(1):45. Erratum in: Nat Rev Dis Primers. 2019 Jul 16;5(1):49. Saketkoo LA, Russell AM, Jensen K, et al. Health-related quality of life (HRQoL) in sarcoidosis: diagnosis, management, and health outcomes. Diagnostics. 2021 Jun 15;11(6):1089. Moor CC, van Manen MJG, Wijsenbeek MS, Mandizha J, Tavee J, Newton J, et al. Needs, perceptions and education in sarcoidosis: a live interactive survey of patients and partners. Lung. 2018 Oct;196(5):569–75. Epub 2018 Aug 7. Drent M, Strookappe B, Hoitsma E, De Vries J. Consequences of sarcoidosis. Clin Chest Med. 2015 Dec;36(4):727–37. Epub 2015 Sep 26. Hyland ME, Jones RCM, Hanney KE. The lung information needs questionnaire: development, preliminary validation and findings. Respir Med. 2006 Oct;100(10):1807–16. Epub 2006 Mar 9. Kuckartz U. Qualitative inhaltsanalyse. Methoden, praxis, computerunterstützung (grundlagentexte methoden, 3., überarbeitete auflage). Weinheim: Beltz Juventa. 2016. Waverijn G, Spreeuwenberg P, Heijmans M. Leven met een longziekte in Nederland: cijfers en trends over de zorg-en leefsituatie van mensen met een longziekte, 2016. 2016. Tsilika E, Parpa E, Galanopoulou A, Nikoloudi M, Galanos A, Mystakidou K. The effect of cancer patients’ attachment orientations on their satisfaction of medical care. J BUON. 2019 Jul-Aug;24(4):1712–8. Dengler R, Straub N, Bredow L, Becker J, Hornschuch M, Riedel O, et al. Ambulante Spezialfachärztliche Versorgung (ASV): eine multiperspektivische Studie zu Status quo, Herausforderungen und Perspektiven [Outpatient medical specialist care (ASV): a multiperspective study on status quo, challenges and perspectives]. Z Evid Fortbild Qual Gesundhwes. 174;2022 Sep 9:70–81(22). Epub ahead of print. Gaber E, Hundertmark-Mayser J. Gesundheitsbezogene Selbsthilfegruppen – Beteiligung und Informiertheit in Deutschland – Ergebnisse des Telefonischen Gesundheitssurveys 2003 [Health related self-help groups–participation and information level in Germany. Results of the German telephone health survey 2003]. Gesundheitswesen. 2005 Aug-Sep;67(08/09):620–9. Moor CC, Kahlmann V, Culver DA, Wijsenbeek MS. Comprehensive care for patients with sarcoidosis. J Clin Med. 2020 Feb 1;9(2):390. Wilkens FM, Ganter C, Kriegsmann K, Wilkens H, Kahn N, Goobie GC, et al. YouTube-videos for patient education in lymphangioleiomyomatosis?Respir Res. 2022 Apr 27;23(1):103. Fisher JH, O’Connor D, Flexman AM, Shapera S, Ryerson CJ. Accuracy and reliability of internet resources for information on idiopathic pulmonary fibrosis. Am J Respir Crit Care Med. 2016 Jul 15;194(2):218–25. Bruce JG, Tucholka JL, Steffens NM, Neuman HB. Quality of online information to support patient decision-making in breast cancer surgery. J Surg Oncol. 2015 Nov;112(6):575–80. Epub 2015 Sep 29. van Dongen SI, de Nooijer K, Cramm JM, Francke AL, Oldenmenger WH, Korfage IJ, et al. Self-management of patients with advanced cancer: a systematic review of experiences and attitudes. Palliat Med. 2020 Feb;34(2):160–78. Voortman M, Hendriks CMR, Elfferich MDP, Bonella F, Moller J, De Vries J, et al. The burden of sarcoidosis symptoms from a patient perspective. Lung. 2019 Apr;197(2):155–61. Epub 2019 Feb 16. Erratum in: Lung. 2019 Apr 8. Drent M, Crouser ED, Grunewald J. Challenges of sarcoidosis and its management. N Engl J Med. 2021 Sep 9;385(11):1018–32. Baumann E, Czerwinski F, Reifegerste D. Gender-specific determinants and patterns of online health information seeking: results from a representative German health survey. J Med Internet Res. 2017 Apr 4;19(4):e92. Ek S. Gender differences in health information behaviour: a Finnish population-based survey. Health Promot Int. 2015 Sep;30(3):736–45. Epub 2013 Aug 28. Husson O, Thong MS, Mols F, Oerlemans S, Kaptein AA, van de Poll-Franse LV. Illness perceptions in cancer survivors: what is the role of information provision?Psychooncology. 2013 Mar;22(3):490–8. Epub 2012 Feb 6. Faller H, Koch U, Brähler E, Harter M, Keller M, Schulz H, et al. Satisfaction with information and unmet information needs in men and women with cancer. J Cancer Surviv. 2016 Feb;10(1):62–70. Epub 2015 May 9. Article / Publication Details

Received: December 04, 2022
Accepted: February 20, 2023
Published online: April 13, 2023

Number of Print Pages: 9
Number of Figures: 2
Number of Tables: 1

ISSN: 0025-7931 (Print)
eISSN: 1423-0356 (Online)

For additional information: https://www.karger.com/RES

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