Fear of Progression is Determined by Anxiety and Self-Efficacy but not Disease-Specific Parameters in Patients with Parkinson’s Disease: Preliminary Data from a Multicenter Cross-Sectional Study

Article type: Research Article

Authors: Folkerts, Ann-Kristin^{a; *} | Haarmann, Lena^a | Nielsen, Jörn^{a; b} | Saliger, Jochen^b | Eschweiler, Mareike^b | Karbe, Hans^b | Allert, Niels^b | Vida, Viktoria^a | Trenkwalder, Claudia^{c; d} | Kruse, Annika^c | Oelsner, Henriette^e | Ebersbach, Georg^e | Kalbe, Elke^a

Affiliations: [a] Department of Medical Psychology | Neuropsychology and Gender Studies & Center for Neuropsychological Diagnostics andIntervention (CeNDI), Faculty of Medicine and University Hospital Cologne, University of Cologne, Cologne, Germany | [b] Neurological Rehabilitation Centre Godeshoehee.V., Bonn, Germany | [c] Center of Parkinsonism and Movement Disorders, Paracelsus-Elena Hospital, Kassel, Germany | [d] Department of Neurosurgery, University Medical Center, Goettingen, Germany | [e] Movement Disorders Clinic, Beelitz-Heilstaetten, Germany

Correspondence: [*] Correspondence to: Ann-Kristin Folkerts, PhD, Medical Psychology | Neuropsychology and Gender Studies & Center for Neuropsychological Diagnostics and Interventions (CeNDI), Faculty of Medicine and University Hospital Cologne, University of Cologne. Kerpener Str. 62, D-50937 Cologne, Germany. Tel.: +49 221 478 96248; Fax: +49 221 478 3420; E-mail: [email protected].

Abstract: Background:Fear of progression (FoP) is a reactive, conscious concern about chronic disease progression and its consequences which may limit quality of life substantially. Only one study has examined FoP in Parkinson’s disease (PD), showing the second highest FoP scores among chronic diseases. Objective:To examine FoP prevalence and to exploratorily analyze determinants of FoP in PD. Methods:Within a multicenter cross-sectional study, 120 PD inpatients (age: 64.45±9.20; 60.8% male; UPDRS-III: 28.86±16.12) were examined with the FoP questionnaire (FoP-Q; max. 20 points). Stepwise multiple linear regression analysis examined sociodemographic, clinical, and (neuro-) psychological determinants of FoP. Results:With a mean FoP-Q score of 8.08±2.17, 63.0% of the patients were classified with moderate FoP and 17.6% with dysfunctional (i.e., severe) FoP. The highest scores were shown for the subscale ‘loss of autonomy’. Increased levels of anxiety, less self-efficacy, female gender, current employment, and lower health literacy were identified as significant determinants associated with FoP. Conclusion:With more than 80% of patients showing moderate to dysfunctional FoP, it must be regarded as a frequent symptom in PD, which needs to be further understood and addressed in clinical practice. Clinical parameters like PD duration and severity were no determinants for FoP, indicating that FoP awareness must be considered by professionals at all disease stages.

Keywords: Parkinson’s disease, fear of progression, disease progression, anxiety, self-efficacy, health literacy, cross-sectional study

DOI: 10.3233/JPD-223314

Journal: Journal of Parkinson's Disease, vol. 12, no. 8, pp. 2543-2553, 2022