Mareye Voortman1,2,3, Celine M R Hendriks4,5, Paul Lodder6,7, Marjolein Drent8,4,9, Jolanda De Vries4,6,10. 1. Department of Pulmonology, ILD Center of Excellence, St. Antonius Hospital, Nieuwegein, The Netherlands, m.voortman@umcutrecht.nl. 2. Department of Pulmonology, Division of Heart and Lungs, University Medical Centre Utrecht, Utrecht, The Netherlands, m.voortman@umcutrecht.nl. 3. Mild care foundation research team, Ede, The Netherlands, m.voortman@umcutrecht.nl. 4. Mild care foundation research team, Ede, The Netherlands. 5. Faculty of Medicine, Utrecht University, Utrecht, The Netherlands. 6. Department of Medical and Clinical Psychology, Tilburg University, Tilburg, The Netherlands. 7. Department of Methodology and Statistics, Tilburg University, Tilburg, The Netherlands. 8. Department of Pulmonology, ILD Center of Excellence, St. Antonius Hospital, Nieuwegein, The Netherlands. 9. Department of Pharmacology and Toxicology, FHML, Maastricht University, Maastricht, The Netherlands. 10. Department of Medical Psychology, ETZ (Elisabeth-TweeSteden Ziekenhuis) Tilburg, Tilburg, The Netherlands.
Abstract
BACKGROUND: Consequences of sarcoidosis are wide ranging, and the symptom burden has a great impact on patients' quality of life (QoL). However, the QoL of couples living with sarcoidosis has not yet been studied. OBJECTIVES: Our aim was to assess the QoL of couples living with sarcoidosis and to evaluate whether living with a partner with sarcoidosis influences the partner's QoL. Furthermore, we aimed to assess whether nonspecific symptoms (fatigue, cognitive failure, small fiber neuropathy (SFN)-related symptoms, depressive symptoms, and state/trait anxiety) predict QoL of partners as well as sarcoidosis patients. METHOD: Sarcoidosis outpatients, recruited at Maastricht University Medical Centre (n = 443), and their partners (n = 208) completed several questionnaires, including the World Health Organization QoL - BREF, Fatigue Assessment Scale, SFN screening list, and cognitive failure questionnaire. RESULTS: QoL of the partners as well as the sarcoidosis patients was reduced compared with healthy controls, especially regarding the physical health domain. All nonspecific symptoms studied, as well as perceived social support, predicted one or more QoL domains in the sarcoidosis patients, but these factors did not predict the QoL of their partners. CONCLUSIONS: The QoL of partners of sarcoidosis patients was reduced, although to a lesser extent than that of the patients. Although the nonspecific symptoms and perceived social support were related to the patients' QoL, this was not the case for the partners. In the management of sarcoidosis, it is important to focus not only on the patients but also on their partners.
BACKGROUND: Consequences of sarcoidosis are wide ranging, and the symptom burden has a great impact on patients' quality of life (QoL). However, the QoL of couples living with sarcoidosis has not yet been studied. OBJECTIVES: Our aim was to assess the QoL of couples living with sarcoidosis and to evaluate whether living with a partner with sarcoidosis influences the partner's QoL. Furthermore, we aimed to assess whether nonspecific symptoms (fatigue, cognitive failure, small fiber neuropathy (SFN)-related symptoms, depressive symptoms, and state/trait anxiety) predict QoL of partners as well as sarcoidosispatients. METHOD:Sarcoidosis outpatients, recruited at Maastricht University Medical Centre (n = 443), and their partners (n = 208) completed several questionnaires, including the World Health Organization QoL - BREF, Fatigue Assessment Scale, SFN screening list, and cognitive failure questionnaire. RESULTS: QoL of the partners as well as the sarcoidosispatients was reduced compared with healthy controls, especially regarding the physical health domain. All nonspecific symptoms studied, as well as perceived social support, predicted one or more QoL domains in the sarcoidosispatients, but these factors did not predict the QoL of their partners. CONCLUSIONS: The QoL of partners of sarcoidosispatients was reduced, although to a lesser extent than that of the patients. Although the nonspecific symptoms and perceived social support were related to the patients' QoL, this was not the case for the partners. In the management of sarcoidosis, it is important to focus not only on the patients but also on their partners.
Authors: Jonas Christian Schupp; Sandra Freitag-Wolf; Elena Bargagli; Violeta Mihailović-Vučinić; Paola Rottoli; Aleksandar Grubanovic; Annegret Müller; Arne Jochens; Lukas Tittmann; Jasmin Schnerch; Carmela Olivieri; Annegret Fischer; Dragana Jovanovic; Snežana Filipovic; Jelica Videnovic-Ivanovic; Paul Bresser; René Jonkers; Kate O'Reilly; Ling-Pei Ho; Karoline I Gaede; Peter Zabel; Anna Dubaniewicz; Ben Marshall; Robert Kieszko; Janusz Milanowski; Andreas Günther; Anette Weihrich; Martin Petrek; Vitezslav Kolek; Michael P Keane; Sarah O'Beirne; Seamas Donnelly; Sigridur Olina Haraldsdottir; Kristin B Jorundsdottir; Ulrich Costabel; Francesco Bonella; Benoît Wallaert; Christian Grah; Tatjana Peroš-Golubičić; Mauritio Luisetti; Zamir Kadija; Stefan Pabst; Christian Grohé; János Strausz; Martina Vašáková; Martina Sterclova; Ann Millar; Jiří Homolka; Alena Slováková; Yvonne Kendrick; Anjali Crawshaw; Wim Wuyts; Lisa Spencer; Michael Pfeifer; Dominique Valeyre; Venerino Poletti; Hubertus Wirtz; Antje Prasse; Stefan Schreiber; Michael Krawczak; Joachim Müller-Quernheim Journal: Eur Respir J Date: 2018-01-25 Impact factor: 16.671
Authors: M Voortman; C M R Hendriks; M D P Elfferich; F Bonella; J Møller; J De Vries; U Costabel; M Drent Journal: Lung Date: 2019-02-16 Impact factor: 2.584
Authors: Lesley Ann Saketkoo; Aryn Karpinski; Jessica Young; Ryan Adell; McCall Walker; Tamarin Hennebury; Melissa Wickremasinghe; Anne-Marie Russell Journal: ERJ Open Res Date: 2018-05-08