What is quality of life and how do we measure it? Relevance to Parkinson's disease and movement disorders

Martinez‐Martín, Pablo

doi:10.1002/mds.26885

Cited by 80 publications

(66 citation statements)

References 105 publications

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“…In the literature, quality of life has been synonymously used with other terms such as health, health status, perceived health, functional status, and health-related quality of life although these terms are independent of one another [102]. The concepts of quality of life are wide incorporating economic, environmental, cultural, social, spiritual and personal aspects [103,104], whereas health-related quality of life specifically focuses on individual's physical, mental and social aspects and the perceptions of their global health [103,104]. Health-related quality of life has been found to be lower among care partners of people with PD compared to general population [92] and decreases with the emergence and development of cognitive impairment in PD [5,105,106].…”

Section: Quality Of Lifementioning

confidence: 99%

Long-Term Partnerships in Lewy Body Dementias

Vatter¹,

Leroi²

2019

Geriatric Medicine and Gerontology

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Long-term partnerships are important as they can determine happiness, influence physical and mental health and lengthen one's lifespan. However, complex neurodegenerative conditions, such as Parkinson's disease dementia (PDD) and dementia with Lewy bodies (DLB), can disrupt long-term relationships and even lead to dissolution of the partnership. The majority of studies in this field have focused on exploring the effect of PDD and DLB on care partners' outcomes but the impact of these conditions on dyadic, long term relationships is less well understood. We conducted a series of studies with people with PDD or DLB and their caregiving life partners using quantitative and qualitative methods. We demonstrated that PDD and DLB has a tremendous impact on the caregiving life partners and reduces relationship satisfaction. We argue for more studies in this field and recommend that future research focuses on strengthening dyadic relationships, which can ultimately preserve relationships and delay institutionalisation of the person with PDD and DLB, which has cost saving implications.

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Section: Quality Of Lifementioning

confidence: 99%

Long-Term Partnerships in Lewy Body Dementias

Vatter¹,

Leroi²

2019

Geriatric Medicine and Gerontology

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“…The World Health Organization's Quality of Life Group de nes quality of life as individual's perception of his or her life status within the context of the culture and value system in which individual lives and concerns [9]. Quality of life is one of the most important concepts and indicators for studying management of chronic disease such as PD [10]. Most studies evaluated HRQL for people with PD through the 39-item Parkinson's disease Quality of life Questionnaire (PDQ-39) [11][12][13].…”

Section: Introductionmentioning

confidence: 99%

Association between non-motor symptoms and health-related quality of life for patients with Parkinson’s disease: Evidence from a smartphone-based survey

Fan

Zhao

Luo

et al. 2020

Preprint

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Background This study aims to explore the association between the total number of non-motor symptoms and the Parkinson’s disease (PD) patients’ health-related quality of life quantitatively, using data from one of the largest smartphone-powered studies and a simplified version of 8-item Parkinson’s disease Quality of life Questionnaire (PDQ-8). Methods The data used for analysis constitutes one part of a dataset derived from the project named ‘100 for Parkinson’s’. 1246 patients were included in the baseline survey. The 30-item Non-Motor Symptom (NMS-30) Questionnaire and PDQ-8 Summary Index (PDQ-8 SI) were used to measure health-related quality of life and a generalized linear model was used to analyze the association of the non-motor symptoms and quality of life. Results The mean number of NMS per patient was 11.81 ± 5.53. For patients with limited ability to work: the key symptoms were urgency (77.4%), sad or blue (71.05%) and difficulty getting to sleep or staying asleep (70.90%). After controlling for the life-style determinants and psychological symptoms prior PD diagnosis determinants, GLM presented the total sum of NMS-30 questions had the strongest positive influence on health-related quality of life as measured by the PDQ-8 SI. Where the sum of NMS scores increases by 1 point, the PDQ-8 SI will increase by 1.33 points (95%CI: 1.13, 1.52; P < 0.001). For patients without limited ability to work: urgency (62.45%), difficulty getting to sleep or staying asleep (59.81%) and getting up regularly at night to pass urine (55.09%) were the most frequent symptoms. GLM showed that where the total sum of NMS scores increases by 1 point, the PDQ-8 SI will increase by 1.56 points (95%CI: 1.37, 1.76; P < 0.001) after controlling for other confounders. Conclusions This smartphone-based study finds a higher total number of non-motor symptoms is related to a lower health-related quality of life for PD patients. It provides useful evidence for the PDQ-8 instrument and is helpful for a multidisciplinary approach to patient care and facilitate the provision of more comprehensive education for patients and caregivers.

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“…Quality of life is one of the most important concepts and indicators for studying management of chronic disease such as PD [10]. Most studies evaluated health-related quality of life for people with PD through the 39-item Parkinson's disease Quality of life Questionnaire (PDQ-39) [11][12][13].…”

mentioning

confidence: 99%

Association between non-motor symptoms and health-related quality of life for patients with Parkinson’s disease: Evidence from a smartphone-based survey

Fan

Zhao

Luo

et al. 2020

Preprint

View full text Add to dashboard Cite

Background This study aims to explore the association between the total number of non-motor symptoms and the Parkinson’s disease (PD) patients’ health-related quality of life quantitatively, using data from one of the largest smartphone-powered studies and a simplified version of 8-item Parkinson’s disease Quality of life Questionnaire (PDQ-8). Methods The data used for analysis constitutes one part of a dataset derived from the project named ‘100 for Parkinson’s’, an initiative of uMotif in conjunction with the Cure Parkinson’s Trust, Parkinson’s UK and the European Parkinson’s Disease Association. 1246 patients were included in the baseline survey. The 30-item Non-Motor Symptom (NMS-30) Questionnaire and PDQ-8 Summary Index (PDQ-8 SI) were used to measure health-related quality of life and a generalized linear model was used to analyze the association of the non-motor symptoms and quality of life. Results The mean number of NMS per patient was 11.81 ± 5.53. For patients with limited ability to work: the key symptoms were urgency (77.4%), sad or blue (71.05%) and difficulty getting to sleep or staying asleep (70.90%). After controlling for the life-style determinants and psychological symptoms prior PD diagnosis determinants, GLM presented the total sum of NMS-30 questions had the strongest positive influence on health-related quality of life as measured by the PDQ-8 SI. Where the sum of NMS scores increases by 1 point, the PDQ-8 SI will increase by 1.33 points (95%CI: 1.13, 1.52; P < 0.001). For patients without limited ability to work: urgency (62.45%), difficulty getting to sleep or staying asleep (59.81%) and getting up regularly at night to pass urine (55.09%) were the most frequent symptoms. GLM showed that where the total sum of NMS scores increases by 1 point, the PDQ-8 SI will increase by 1.56 points (95%CI: 1.37, 1.76; P < 0.001) after controlling for other confounders. Conclusions This smartphone-based study finds a higher total number of non-motor symptoms is related to a lower health-related quality of life for PD patients. It provides useful evidence for the PDQ-8 instrument and is helpful for a multidisciplinary approach to patient care and facilitate the provision of more comprehensive education for patients and caregivers.

show abstract

What is quality of life and how do we measure it? Relevance to Parkinson's disease and movement disorders

Cited by 80 publications

References 105 publications

Long-Term Partnerships in Lewy Body Dementias

Long-Term Partnerships in Lewy Body Dementias

Association between non-motor symptoms and health-related quality of life for patients with Parkinson’s disease: Evidence from a smartphone-based survey

Association between non-motor symptoms and health-related quality of life for patients with Parkinson’s disease: Evidence from a smartphone-based survey

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