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JMD : Journal of Movement Disorders

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Original Article
Health-Related Quality of Life for Parkinson’s Disease Patients and Their Caregivers
Michal Lubomski, Ryan L. Davis, Carolyn M. Sue
J Mov Disord. 2021;14(1):42-52.   Published online January 12, 2021
DOI: https://doi.org/10.14802/jmd.20079
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  • 21 Citations
AbstractAbstract PDF
Objective
Motor and non-motor symptoms (NMS) negatively impact the health-related quality of life (HRQoL) for individuals with Parkinson’s disease (PD), as well as their caregivers. NMS can emerge decades prior to the manifestation of motor symptoms but often go unrecognized and therefore untreated. To guide clinical management, we surveyed differences and identified factors that influence HRQoL in a cohort of PD patients and family caregivers.
Methods
A total of 103 PD patients were compared with 81 caregivers. Outcome measures collected from validated questionnaires included generic and disease-specific HRQoL assessments, depression frequency and severity, constipation severity, upper and lower gastrointestinal symptoms, physical activity and motor symptom severity.
Results
PD patients reported significantly decreased physical and mental HRQoL compared to their caregivers (both p < 0.001). Unemployment, the need for social support services, rehabilitation use, REM sleep behavior disorder, impulse control disorders and features suggestive of increasing disease severity hallmarked by increasing PD duration, higher MDS UPDRS-III (Movement Disorder Society–Unified Parkinson’s Disease Rating Scale–Part III) scores, higher daily levodopa equivalence dose and motor fluctuations were consistent with a lower HRQoL in our PD cohort. Furthermore, decreased physical activity, chronic pain, depression, constipation and upper gastrointestinal dysfunction (particularly indigestion, excess fullness and bloating) suggested vulnerability to reduced HRQoL. Overall, PD patients perceived their health to decline by 12% more than their caregivers did over a 1-year period.
Conclusion
PD patients reported decreased HRQoL, with both motor symptoms and NMS negatively impacting HRQoL. Our findings support the routine clinical screening of HRQoL in PD patients to identify and address modifiable factors.

Citations

Citations to this article as recorded by  
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    Pablo Martinez-Martin, Matej Skorvanek, Tove Henriksen, Susanna Lindvall, Josefa Domingos, Ali Alobaidi, Prasanna L. Kandukuri, Vivek S. Chaudhari, Apeksha B. Patel, Juan Carlos Parra, James Pike, Angelo Antonini
    Journal of Neurology.2023; 270(4): 2162.     CrossRef
  • Perspectives of people with Parkinson's disease and family carers about disease management in community settings: A cross‐country qualitative study
    M. Victoria Navarta‐Sánchez, Ana Palmar‐Santos, Azucena Pedraz‐Marcos, Claire Reidy, Dia Soilemezi, Anita Haahr, Dorthe Sørensen, Helle Rønn Smidt, Line Kildal Bragstad, Ellen Gabrielsen Hjelle, Silje Bjørnsen Haavaag, Mari Carmen Portillo
    Journal of Clinical Nursing.2023; 32(15-16): 5201.     CrossRef
  • Barriers to home exercise for patients with Parkinson’s disease: a qualitative study
    Qiaohong Wang, Yiping Chen, Linbo Li, Chao Li, Li Li, Huili Cao, Hui Yang
    BMJ Open.2023; 13(2): e061932.     CrossRef
  • An update on pathogenesis and clinical scenario for Parkinson’s disease: diagnosis and treatment
    Hussaini Adam, Subash C. B. Gopinath, M. K. Md Arshad, Tijjani Adam, N. A. Parmin, Irzaman Husein, Uda Hashim
    3 Biotech.2023;[Epub]     CrossRef
  • Gastrointestinal Dysfunction in Parkinson’s Disease: Neuro-Gastroenterology Perspectives on a Multifaceted Problem
    Ai Huey Tan, Kee Huat Chuah, Yuan Ye Beh, Jie Ping Schee, Sanjiv Mahadeva, Shen-Yang Lim
    Journal of Movement Disorders.2023; 16(2): 138.     CrossRef
  • Abdominal pain in Parkinson’s disease
    A.A. Pilipovich, O.V. Vorobyova, S.A. Makarov
    Russian Journal of Pain.2023; 21(2): 12.     CrossRef
  • The multifaceted impact of structured training program on persons with Parkinson disease and their adult caregiver: A protocol for a systematic review
    Sharmila Gopala Krishna Pillai, Nor Azlin Mohd Nordin, Norlinah Mohamed Ibrahim
    Medicine.2023; 102(28): e33966.     CrossRef
  • Detecting Minor Symptoms of Parkinson’s Disease in the Wild Using Bi-LSTM with Attention Mechanism
    Vasileios Skaramagkas, Iro Boura, Cleanthi Spanaki, Emilia Michou, Georgios Karamanis, Zinovia Kefalopoulou, Manolis Tsiknakis
    Sensors.2023; 23(18): 7850.     CrossRef
  • The impact of device-assisted therapies on the gut microbiome in Parkinson’s disease
    Michal Lubomski, Xiangnan Xu, Andrew J. Holmes, Jean Y. H. Yang, Carolyn M. Sue, Ryan L. Davis
    Journal of Neurology.2022; 269(2): 780.     CrossRef
  • Predictive Model of Quality of Life in Patients with Parkinson’s Disease
    Eduardo Candel-Parra, María Pilar Córcoles-Jiménez, Victoria Delicado-Useros, Marta Carolina Ruiz-Grao, Antonio Hernández-Martínez, Milagros Molina-Alarcón
    International Journal of Environmental Research and Public Health.2022; 19(2): 672.     CrossRef
  • Die neue Parkinson-Schmerzklassifikation (PSK)
    V. Mylius, S. Perez Lloret, C. S. Brook, M. T. Krüger, S. Hägele-Link, R. Gonzenbach, J. Kassubek, S. Bohlhalter, J. P. Lefaucheur, L. Timmermann, G. Kägi, F. Brugger, D. Ciampi de Andrade, J. C. Möller
    Der Nervenarzt.2022; 93(10): 1019.     CrossRef
  • Quantification Analysis of Sleep Based on Smartwatch Sensors for Parkinson’s Disease
    Yi-Feng Ko, Pei-Hsin Kuo, Ching-Fu Wang, Yu-Jen Chen, Pei-Chi Chuang, Shih-Zhang Li, Bo-Wei Chen, Fu-Chi Yang, Yu-Chun Lo, Yi Yang, Shuan-Chu Vina Ro, Fu-Shan Jaw, Sheng-Huang Lin, You-Yin Chen
    Biosensors.2022; 12(2): 74.     CrossRef
  • Gastrointestinal Dysfunction Impact on Life Quality in a Cohort of Russian Patients with Parkinson’s Disease I-III H&Y Stage
    A. A. Pilipovich, O. V. Vorob’eva, S. A. Makarov, N. N. Shindryaeva, Yu D. Vorob’eva, Seyed-Mohammad Fereshtehnejad
    Parkinson's Disease.2022; 2022: 1.     CrossRef
  • Nutritional Intake and Gut Microbiome Composition Predict Parkinson’s Disease
    Michal Lubomski, Xiangnan Xu, Andrew J. Holmes, Samuel Muller, Jean Y. H. Yang, Ryan L. Davis, Carolyn M. Sue
    Frontiers in Aging Neuroscience.2022;[Epub]     CrossRef
  • The Gut Microbiome in Parkinson’s Disease: A Longitudinal Study of the Impacts on Disease Progression and the Use of Device-Assisted Therapies
    Michal Lubomski, Xiangnan Xu, Andrew J. Holmes, Samuel Muller, Jean Y. H. Yang, Ryan L. Davis, Carolyn M. Sue
    Frontiers in Aging Neuroscience.2022;[Epub]     CrossRef
  • Characteristics and quality of life of substance users and their caregivers
    Jadranka M. Maksimovic, Olivera B. Sbutega, Aleksandar D. Pavlovic, Hristina D. Vlajinac, Ivana I. Kavecan, Isidora S. Vujcic, Sandra B. Grujicic Sipetic
    Medicine.2022; 101(31): e29699.     CrossRef
  • Defining the unknowns for cell therapies in Parkinson's disease
    Emma L. Lane, Mariah J. Lelos
    Disease Models & Mechanisms.2022;[Epub]     CrossRef
  • Increased Added Sugar Consumption Is Common in Parkinson's Disease
    Natalie C. Palavra, Michal Lubomski, Victoria M. Flood, Ryan L. Davis, Carolyn M. Sue
    Frontiers in Nutrition.2021;[Epub]     CrossRef
  • Relationship Satisfaction in People with Parkinson’s Disease and Their Caregivers: A Cross-Sectional Observational Study
    Johanne Heine, Hannah von Eichel, Selma Staege, Günter U. Höglinger, Florian Wegner, Martin Klietz
    Brain Sciences.2021; 11(6): 822.     CrossRef
  • Diagnosis and Management of Pain in Parkinson's Disease: A New Approach
    Veit Mylius, Jens Carsten Möller, Stephan Bohlhalter, Daniel Ciampi de Andrade, Santiago Perez Lloret
    Drugs & Aging.2021; 38(7): 559.     CrossRef
  • Cognitive Influences in Parkinson's Disease Patients and Their Caregivers: Perspectives From an Australian Cohort
    Michal Lubomski, Ryan L. Davis, Carolyn M. Sue
    Frontiers in Neurology.2021;[Epub]     CrossRef

JMD : Journal of Movement Disorders