Does self-reported well-being of patients with Parkinson's disease influence caregiver strain and quality of life?

Parkinson’s disease (PD) is a complex disorder characterized by a wide spectrum of symptoms. Depression and anxiety are common manifestations in PD and may be determinants of health-related quality of life (HRQoL). The objective of this study is to determine the association of depression and anxiety with the dimensions of HRQoL in subjects with PD enrolled in an association of patients. Ninety-five community-based patients with PD diagnosis at different disease stages were studied. HRQoL was assessed using the Parkinson’s Disease Questionnaire (PDQ-39); depression and anxiety were assessed using the Beck Depression Inventory (BDI-II) and the State-Trait Anxiety Inventory (STAI), respectively. Our results showed that depression and anxiety were negatively associated with HRQoL measured by PDSI. Higher motor dysfunction measured by Hoehn and Yahr (H&Y) staging was also associated with worse HRQoL. Depression was the most influential variable in the model. All PDQ-39 dimensions except social support and bodily discomfort were associated with depression. Anxiety was associated with the emotional well-being and bodily discomfort dimensions. These results suggest that physicians should pay attention to the presence of psychiatric symptoms and treat them appropriately.

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Parkinson's disease: Impact of clinical and cognitive aspects on quality of life

Dementia & Neuropsychologia ◽

10.1590/s1980-57642010dn40200010 ◽

2010 ◽

Vol 4 (2) ◽

pp. 131-137 ◽

Cited By ~ 7

Author(s):

Glória Maria Almeida Souza Tedrus ◽

Lineu Correa Fonseca ◽

Patrícia Mencaroni Kange

Keyword(s):

Quality Of Life ◽

Parkinson’S Disease ◽

Parkinson's Disease ◽

Rating Scale ◽

Signs And Symptoms ◽

Well Being ◽

Maternity Hospital ◽

Related Factors ◽

Significance Level

Abstract Parkinson's disease (PD) is a chronic disease manifested principally by motor signs and symptoms, but with frequent neuropsychological alterations. Objectives: To study the relationship between clinical and cognitive aspects and the perception of quality of life (QOL) in PD patients. Methods: Twenty consecutive patients (13 men) with idiopathic PD (mean age: 64.5y), mean disease time of 7.8 years and at stages 1-3 according to the modified Hoehn and Yahr staging scale (HYS), all outpatients from the Neurology Department of the Celso Pierro General and Maternity Hospital (PUC-Campinas), were analyzed. The following were applied: a clinical-neurological assessment, the Mini-Mental State Examination (MMSE), standard neuropsychological battery of the CERAD (Consortium to Establish a Registry for Alzheimer's Disease), Hamilton Depression Rating Scale (HAM-D) and a QOL questionnaire (Parkinson's Disease Questionnaire - PDQ-39). Statistical analysis was carried out at a significance level of p<0.05. Results: On the PDQ-39 under the sections total, mobility and activities of daily living, and the items motor compromise (HYS) and language of the MMSE were predictors of worse QOL. Verbal fluency was a factor for emotional well-being on the PDQ-39, whereas higher scores for HAM-D and worse performance on the item attention and calculation of the MMSE were associated with worse QOL in the social support section. Total score on the MMSE and educational level were QOL factors in cognition Conclusions: The findings of the present study suggest that clinical, cognitive, motor or other depression-related factors contribute differently to the domains of QOL.

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The importance of support and forms of kinesiotherapeutic activity of family members of persons affected by Parkinson’s disease

Health Promotion & Physical Activity ◽

10.5604/01.3001.0013.1517 ◽

2019 ◽

Vol 6 (1) ◽

pp. 1-7

Author(s):

Aleksandra Wróbel ◽

Piotr Wróbel ◽

Ewa Otfinowska

Keyword(s):

Quality Of Life ◽

Parkinson’S Disease ◽

Parkinson's Disease ◽

Family Support ◽

Family System ◽

Well Being ◽

Entire Family ◽

Permanent Disability ◽

The Impact

Parkinson’s disease is a chronic and progressive degenerative disease of the central nervous system. The disorder is classified as extra pyramidal system diseases. In order to improve the patient’s condition and increase the level of quality of life, pharmacological treatment and rehabilitation are used to eliminate progressive disability. The help of the surrounding environment affects not only the course of the disease, but above all the emotional well-being of the patient. Family support and its participation in the whole therapeutic process greatly optimize its results. The aim of this work is to present the most important issues regarding kinesiotherapy in Parkinson’s disease and to demonstrate the impact of the involvement of the whole family system on the course and results of therapy. Kinesiotherapy as an element of treatment plays a very important role in the process of improving and adapting the patient to perform daily nursing activities. Kinesiotherapeutic treatments have not only a significant impact on the symptoms occurring in the course of the disease, but also on the overall health. The individual selection of therapy and the involvement of the entire team of therapists is extremely important in eliminating both movement and extrinsic symptoms. The correct implementation of the physiotherapist’s recommendations, the patient’s involvement, as well as the active participation of the patient’s environment, is a condition for the effectiveness of the entire process of maintaining health and fitness. Kinesiotherapy prevents permanent disability and helps maintain the longest possible independence and good quality of life. The involvement of the entire family support system has an impact on the results of the therapy.

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Development of a Multidimensional Assessment Tool for the Evaluation of Holistic Quality of Life in Parkinson’s Disease

Journal of Parkinson s Disease ◽

10.3233/jpd-202391 ◽

2021 ◽

pp. 1-10

Author(s):

Franziska Thieken ◽

Lars Timmermann ◽

Keywan Sohrabi ◽

Christiane Woopen ◽

Björn Schmitz-Luhn ◽

...

Keyword(s):

Quality Of Life ◽

Parkinson’S Disease ◽

Parkinson's Disease ◽

Assessment Tool ◽

Well Being ◽

Social Resilience ◽

Longitudinal Assessment ◽

Parkinsonian Syndromes ◽

Holistic Understanding

Background: Parkinsonian syndromes are heterogeneous chronic neurodegenerative disorders associated with both motor and non-motor symptoms. The symptoms have major psychosocial effects on the quality of life of patients and can be a burden for caregivers. So far, several questionnaires have been developed to assess quality of life in Parkinsonism, but none of these include the positive sides on well-being such as personal and social resilience factors. Objective: The aim of this study is to develop a digital framework for a longitudinal assessment of quality of life during the progression of Parkinson’s disease. Methods: The CHAPO model (Challenges and Potentials) has been established in a vast study by Wagner et al. to assess the quality of life of older people. This model includes environmental and individual factors, life chances, and life results, such as individual life evaluation, from a subjective as well as an objective point of view. Therefore, it has been adapted in several development steps to include the specific aspects that affect quality of life in Parkinsonian syndromes. The development process included 6 steps: definition, refinement, operationalization, piloting/debriefing, adjustment, and integration. Results: The development of the CHAPO-PD model has been completed and it represents the first main result of this study. Conclusion: By taking a holistic understanding of quality of life into account, we expect to detect previously unrecognized factors, which correlate to the subjective well-being of Parkinson’s disease patients, and aim to use these findings to improve the health care structures for patients with Parkinson’s disease and related disorders.

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130 * NON-MOTOR SYMPTOMS AND NON-WHITE ETHNICITY ARE ASSOCIATED WITH WORSE QUALITY OF LIFE AND INCREASED CAREGIVER STRAIN IN PARKINSON'S DISEASE

Age and Ageing ◽

10.1093/ageing/afu047.3 ◽

2014 ◽

Vol 43 (suppl 1) ◽

pp. i36-i36

Author(s):

R. Belcher ◽

A. Funaki ◽

C. Vellodi ◽

S. Mathew

Keyword(s):

Quality Of Life ◽

Parkinson’S Disease ◽

Parkinson's Disease ◽

Caregiver Strain ◽

Motor Symptoms ◽

White Ethnicity ◽

Non Motor Symptoms

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Depressive symptoms and perception of quality of life in Parkinson's disease

Arquivos de Neuro-Psiquiatria ◽

10.1590/s0004-282x2009000200006 ◽

2009 ◽

Vol 67 (2a) ◽

pp. 203-208 ◽

Cited By ~ 24

Author(s):

Paula Scalzo ◽

Arthur Kummer ◽

Francisco Cardoso ◽

Antonio Lucio Teixeira

Keyword(s):

Quality Of Life ◽

Parkinson’S Disease ◽

Parkinson's Disease ◽

Depressive Symptoms ◽

Well Being ◽

Poor Quality ◽

Life Questionnaire ◽

Perception Of Quality ◽

The Relationship

BACKGROUND: Depression has been proposed as a major contributor to poor quality of life (QoL) in Parkinson's disease (PD). OBJECTIVE: To evaluate the relationship between depressive symptoms and QoL in subjects with PD. METHOD: Beck Depression Inventary (BDI) was used to evaluate depressive symptoms and Parkinson's Disease Quality of Life Questionnaire (PDQ-39) to assess the perception of the QoL. RESULTS: Thirty seven patients (19 male/ 18 female) with a typical onset PD and mean disease duration of 7.7 years were studied. Higher scores on BDI correlated with poorer perception of the QoL. This association occurred at the expense of the following PDQ39 domains: mobility, activities of daily living, social support, cognition and emotional well-being dimensions. PD severity also correlated with QoL. CONCLUSION: Our study corroborates the assumption that depressive symptoms contributed significantly to QoL in PD.

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Factors Influencing Quality of Life in Caregivers of People with Parkinson's Disease and Implications for Clinical Guidelines

Parkinson s Disease ◽

10.1155/2012/190901 ◽

2012 ◽

Vol 2012 ◽

pp. 1-6 ◽

Cited By ~ 21

Author(s):

D. Morley ◽

S. Dummett ◽

M. Peters ◽

L. Kelly ◽

P. Hewitson ◽

...

Keyword(s):

Quality Of Life ◽

Parkinson’S Disease ◽

Parkinson's Disease ◽

Caregiver Burden ◽

Clinical Guidelines ◽

Service Providers ◽

Caregiver Strain ◽

Factors Influencing ◽

Number Of Factors

The quality of life (QoL) of informal caregivers can be adversely affected by a number of factors. This issue, however, has not been well explored for carers of people with Parkinson's (PwP), with research largely restricted to the assessment of caregiver burden and caregiver strain. This study aims to determine the main influences on carer QoL in this population and consider results in the context of current clinical guidelines for the management of Parkinson's disease (PD). Carers completed the newly validated PDQ-Carer, and PwP completed the PDQ-39. The sample comprised 238 carers (mean age 68.20 years) and 238 PwP (mean age 71.64). Results suggest multiple influences on caregiver QoL. These include carer age, gender, health status, and duration of the caregiving role. PwP levels of mobility and cognitive impairment are also significant influences on carer QoL. Not only should practitioners and service providers be particularly aware of the heightened impact of PD on carers over time and as PwP symptoms deteriorate, but this should also be reflected in clinical guidelines for the management of PD.

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Better quality of life and less caregiver strain in young-onset Parkinson’s disease: a multicentre retrospective cohort study

Journal of Neurology ◽

10.1007/s00415-020-10266-y ◽

2020 ◽

Author(s):

Maarten Te Groen ◽

◽

Bastiaan R. Bloem ◽

Samuel S. Wu ◽

Bart Post

Keyword(s):

Quality Of Life ◽

Parkinson’S Disease ◽

Parkinson's Disease ◽

Cognitive Functioning ◽

Age At Onset ◽

Caregiver Strain ◽

Young Onset ◽

Over Time

Abstract Background Parkinson’s disease (PD) is typically considered as a disease of the elderly. However, there is a sizeable subgroup of patients where PD starts at a younger age, known as young-onset PD (YOPD). We evaluated the differences in quality of life and caregiver strain between YOPD and later onset PD (LOPD) patients in a large cohort. Methods In collaboration with the Parkinson Foundation Quality Improvement Initiative (PF-QII), we conducted a retrospective three-year analysis on 962 PD patients of the QII database (starting date May 2016). Of these, 272 patients had YOPD, and 690 had LOPD. The Parkinson’s Disease Questionnaire-39 (PDQ-39) total score served as primary outcome measure. Furthermore, we analysed group differences in modified caregiver strain index (MCSI) total score, three cognition functions, and number of falls. A regression analysis adjusting for covariates was used to assess the association of age at onset with PDQ-39 and MCSI. Results PDQ scores were better in YOPD patients, MCSI scores on social constraint were lower in YOPD patients, but scores on financial constraint were higher in this group. After adjusting for covariates, YOPD patients had better quality of life and less caregiver strain at all follow-up moments, but not at baseline. Decline over time for all outcomes was lower in the YOPD group compared to the LOPD group. Cognitive functioning and number of falls progressed slower in the YOPD group compared to the LOPD group. Conclusion Compared to LOPD patients, YOPD patients had a better quality of life, less caregiver strain, fewer falls and better cognitive functioning after their first follow-up visit, and also a slower decline over time.

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Active Theater as a Complementary Therapy for Parkinson's Disease Rehabilitation: A Pilot Study

The Scientific World JOURNAL ◽

10.1100/tsw.2010.221 ◽

2010 ◽

Vol 10 ◽

pp. 2301-2313 ◽

Cited By ~ 28

Author(s):

Nicola Modugno ◽

Sara Iaconelli ◽

Mariagrazia Fiorlli ◽

Francesco Lena ◽

Imogen Kusch ◽

...

Keyword(s):

Quality Of Life ◽

Parkinson’S Disease ◽

Parkinson's Disease ◽

Complementary Therapies ◽

Rating Scale ◽

Well Being ◽

Control Group ◽

Global Improvement ◽

Medical Treatments

Most medical treatments of Parkinson's disease (PD) are aimed at the reduction of motor symptoms. However, even when motor improvements are evident, patients often report a deterioration of their daily lives. Thus, to achieve a global improvement in personal well-being, not only drugs, but also complementary therapies, such as physical exercise, occupational and speech therapy, and active music therapy, have been used. We hypothesized that theater could reduce clinical disability and improve the quality of life of PD patients (primary end points) more efficiently than other complementary therapies because (1) in order to impersonate a character, patients are forced to regain the control of their bodies; and (2) while being part of a group, patients have a high degree of social interaction. The need to regain the control of their bodies and their social functioning is very likely to deeply motivate patients. To assess this hypothesis, we ran a randomized, controlled, and single-blinded study that lasted 3 years, on 20 subjects affected by a moderate form of idiopathic PD, in stable treatment with L-dopa and L-dopa agonists, and without severe sensory deficits. Ten patients were randomly assigned to an active theater program (in which patients were required to participate), while the others underwent physiotherapy (control group), the most common nonpharmacological treatment for PD rehabilitation. Patients of both groups were evaluated at the beginning of each year, using five clinical rating scales (Unified ParkinsonParkinson'ss Disease Rating Scale [UPDRS], Schwab and England Scale, ParkinsonParkinson'ss Disease Quality of Life [PDQ39] Scale, Epworth Sleepiness Scale, and Hamilton Depression Rating Scale). The theater patients showed progressive improvements and, at the end of the third year, they showed significant improvements in all clinical scales. Conversely, the control patients did not exhibit significant ameliorations with time. Thus, the present study provides the first scientific evidence that active theater, coupled with conventional medical treatments, represents a valid complementary therapeutic intervention for PD treatment.

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The Mediating Effect of Spiritual Well-Being and Quality of Life for Persons with Parkinson’s Disease in Northern Taiwan

Journal of Parkinson s Disease ◽

10.3233/jpd-212764 ◽

2021 ◽

pp. 1-12

Author(s):

Shu-Fen Chiu ◽

Yih-Ru Wu ◽

Pei-Kwei Tsay ◽

Yi-Chen Chiu

Keyword(s):

Quality Of Life ◽

Parkinson’S Disease ◽

Parkinson's Disease ◽

Well Being ◽

Mediating Effect ◽

Disease Characteristics ◽

Spiritual Well Being ◽

Spiritual Self ◽

The Relationship

Background: Parkinson’s disease (PD), a degenerative disease with irreversible motor dysfunction, impacts patients’ quality of life (QoL). Spirituality can provide a sense of hope and meaning when individuals are faced with adverse life events, such as a diagnosis of PD. However, few studies have examined the relationship between spiritual well-being and QoL for persons with PD. Objective: To explore the relationships between the disease characteristics, spirituality and QoL for persons with PD, and verify the mediating effects of spirituality on the relationship. Methods: This cross-sectional study recruited patients with PD (n = 110) by convenience sampling from a neurological clinic in northern Taiwan. Variables were measured using the Spirituality Index of Well-Being Chinese version (SIWB-C) and the 39-item Parkinson’s disease Quality of Life Questionnaire Chinese version (PDQ-39-C) self-report questionnaires. Descriptive analysis and linear hierarchical regression were conducted to examine the studied variables and explore the mediating effect of spiritual wellbeing. Results: Those whose scores were significantly better in PDQ-39 were younger, employed, with shorter disease duration and less severe condition with better functioning on their early stages and lower LEDD; additionally, those who had better quality of life also experienced better spiritual wellbeing than the counterparts. The regression model demonstrated spiritual self-efficacy had mediating effects between disease characteristics and QoL, explaining 69.8%of the variance (adjusted R 2 = 65.3%). Conclusion: The results can be the references for future strategies and interventions, focusing on increasing spiritual self-efficacy and reducing the impact of disease severity to improve QoL for persons with PD.

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