Julia Strupp1, Anne Kunde1, Maren Galushko1, Raymond Voltz1,2,3,4, Heidrun Golla1. 1. 1 Department of Palliative Medicine, Medical Faculty, University of Cologne, Cologne, Germany. 2. 2 Center for Integrated Oncology Cologne/Bonn (CIO), Cologne, Germany. 3. 3 Clinical Trials Center Cologne (ZKS), Cologne, Germany. 4. 4 Medical Faculty, Center for Health Services Research (ZVFK), University of Cologne, Cologne, Germany.
Abstract
INTRODUCTION: People severely affected by Parkinson disease (PD)/atypical parkinsonism (AP) comprise a heterogeneous group with distinct needs, which so far remain largely unexamined. The aim of our study was to analyze reasons for feeling severely affected and document unmet needs in a patient subgroup severely affected by PD/AP using solely a subjective inclusion criterion. METHODS: Patients feeling severely affected by PD/AP were recruited via a magazine published by the German Parkinson Association. A questionnaire was sent out nationwide. Besides analyzing the closed-ended questions, a subsample of 40% was analyzed regarding the open-ended questions using content analysis. Correlations between subjectively felt severe affectedness and objective criteria were calculated. RESULTS: Eight hundred fourteen questionnaires were analyzed. Sample characteristics were: mean age 70 years; 60.3% male; time since diagnosis up to 37 years; and Hoehn and Yahr score (if known) 3 (44.6%), followed by 4 (23.9%). Significant associations were observed between subjectively felt severe affectedness and Hoehn and Yahr ( P ≤ .05), poorer health ( P ≤ .01), higher nursing care level ( P ≤ 0.01), and having no children ( P ≤ .05). Most common reasons for feeling severely affected were mobility impairment (34.9%), coordination problems (17.0%), speech problems (12.2%), and limited day-to-day activities (7.8%). Most often expressed unmet needs were support in everyday life (28.1%), medical treatment (15.2%), help with financial services (11.6%), and social integration (9.9%). CONCLUSIONS: To meet the complex needs, an integrated multidisciplinary and multiprofessional approach is indicated befitting palliative care principles. Herein, home-based services seem of special importance for patients in advanced disease stages.
INTRODUCTION:People severely affected by Parkinson disease (PD)/atypical parkinsonism (AP) comprise a heterogeneous group with distinct needs, which so far remain largely unexamined. The aim of our study was to analyze reasons for feeling severely affected and document unmet needs in a patient subgroup severely affected by PD/AP using solely a subjective inclusion criterion. METHODS:Patients feeling severely affected by PD/AP were recruited via a magazine published by the German Parkinson Association. A questionnaire was sent out nationwide. Besides analyzing the closed-ended questions, a subsample of 40% was analyzed regarding the open-ended questions using content analysis. Correlations between subjectively felt severe affectedness and objective criteria were calculated. RESULTS: Eight hundred fourteen questionnaires were analyzed. Sample characteristics were: mean age 70 years; 60.3% male; time since diagnosis up to 37 years; and Hoehn and Yahr score (if known) 3 (44.6%), followed by 4 (23.9%). Significant associations were observed between subjectively felt severe affectedness and Hoehn and Yahr ( P ≤ .05), poorer health ( P ≤ .01), higher nursing care level ( P ≤ 0.01), and having no children ( P ≤ .05). Most common reasons for feeling severely affected were mobility impairment (34.9%), coordination problems (17.0%), speech problems (12.2%), and limited day-to-day activities (7.8%). Most often expressed unmet needs were support in everyday life (28.1%), medical treatment (15.2%), help with financial services (11.6%), and social integration (9.9%). CONCLUSIONS: To meet the complex needs, an integrated multidisciplinary and multiprofessional approach is indicated befitting palliative care principles. Herein, home-based services seem of special importance for patients in advanced disease stages.
Authors: Eduardo Candel-Parra; María Pilar Córcoles-Jiménez; Victoria Delicado-Useros; Marta Carolina Ruiz-Grao; Antonio Hernández-Martínez; Milagros Molina-Alarcón Journal: Int J Environ Res Public Health Date: 2022-01-07 Impact factor: 3.390