The Experiences of Treatment Burden in People with Parkinson’s Disease and Their Caregivers: A Systematic Review of Qualitative Studies

2021 ◽  
pp. 1-21
Author(s):  
Qian Yue Tan ◽  
Natalie J. Cox ◽  
Stephen E.R. Lim ◽  
Laura Coutts ◽  
Simon D.S. Fraser ◽  
...  
Keyword(s):  
Systematic Review ◽  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Care Coordination ◽  
Grey Literature ◽  
System Level ◽  
Future Research ◽  
Treatment Burden ◽  
Patient Centered ◽  
Modifiable Factors

Background High treatment burden is associated with poor adherence, wasted resources, poor quality of life and poor health outcomes. Identifying factors that impact treatment burden in Parkinson’s disease can offer insights into strategies to mitigate them. Objective To explore the experiences of treatment burden among people with Parkinson’s disease (PwP) and their caregivers. Methods A systematic review of studies published from year 2006 was conducted. Qualitative and mixed-method studies with a qualitative component that relate to usual care in Parkinson’s disease were included. Quantitative studies and grey literature were excluded. Data synthesis was conducted using framework synthesis. Results 1757 articles were screened, and 39 articles included. Understanding treatment burden in PwP and caregivers was not the primary aim in any of the included studies. The main issues of treatment burden in Parkinson’s disease are: 1) work and challenges of taking medication; 2) healthcare provider obstacles including lack of patient-centered care, poor patient-provider relationships, lack of care coordination, inflexible organizational structures, lack of access to services and issues in care home or hospital settings; and 3) learning about health and challenges with information provision. The treatment burden led to physical and mental exhaustion of self-care and limitations on the role and social activities of PwP and caregivers. Conclusion: There are potential strategies to improve the treatment burden in Parkinson’s disease at an individual level such as patient-centered approach to care, and at system level by improving access and care coordination between services. Future research is needed to determine the modifiable factors of treatment burden in Parkinson’s disease.

scholarly journals The Perspectives of Patients with Parkinson's Disease: A Systematic Review and Thematic Synthesis

2021 ◽  
Author(s):  
Birgitte Nørgaard ◽  
Signe Beck Titlestad ◽  
Charlotte Abrahamsen ◽  
Michael Marcussen
Keyword(s):  
Systematic Review ◽  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Grey Literature ◽  
Healthcare Delivery ◽  
Bibliographic Databases ◽  
Future Research ◽  
Patient Centered ◽  
Thematic Synthesis ◽  
Centered Care

Abstract Background: Parkinson’s disease has considerable impact on the quality of life of both patients and their caregivers. Patients’ perspectives are a source of vital knowledge that informs health professionals’ ability to provide individualised and patient-centered care. The aim of this systematic review was to identify the perspectives of patients with Parkinson’s disease on treatment, care and rehabilitation.Methods: We conducted a systematic review and searched the following electronic bibliographic databases: MEDLINE, EMBASE, CINAHL, PsycInfo and Scopus for original studies published before June 2020. Grey literature was searched at www.parkinson.org, http://www.epda.eu.com, www.apdaparkinson.org and in the OpenSIGLE and HMIC databases. We included studies focusing on patients with Parkinson’s disease aged 18 or older that reported patients’ perspectives on treatment, care and rehabilitation. Results were analysed using thematic synthesis. Results: Ten studies were included, each of them applying qualitative methods and including between 1 and 28 patients. A total of 156 codings led to 17 descriptive themes which resulted in three analytic themes: Significance of self, Significance of informal caregivers and peers, and Significance of professionals.Conclusions: Our findings could be important in helping healthcare professionals plan and deliver treatment, care and rehabilitation based on patients’ priorities in the context of suffering from a chronic disease. The results might also guide future research regarding patient perspectives, as well as how and why to incorporate patients’ perspectives in healthcare delivery. Systematic review registration: The protocol was registered in Prospero (183551).

39 The Experiences of Treatment Burden Among People with Parkinson’s Disease and Their Caregivers: A Systematic Review

2021 ◽  
Vol 50 (Supplement_1) ◽  
pp. i7-i11
Author(s):  
Q Y Tan ◽  
K Ibrahim ◽  
N J Cox ◽  
S E Lim ◽  
L Coutts ◽  
...  
Keyword(s):  
Systematic Review ◽  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Care Home ◽  
Grey Literature ◽  
Well Being ◽  
Future Research ◽  
Treatment Burden ◽  
Healthcare Provision ◽  
The Impact

Abstract Introduction Treatment burden is the “workload of healthcare and its impact on patient functioning and well-being”. High treatment burden may lead to non-adherence to treatment regimens, poor health outcomes, poor quality of life and wasted healthcare resources. Treatment burden among people with Parkinson’s (PwP) and their caregivers has not been previously explored. Methods Using five electronic databases (MEDLINE, Embase, CINAHL, Scopus and PsychInfo), we conducted a systematic review of studies published since 2006 when the first National Institute for Clinical Excellence (NICE) Clinical Guideline for Parkinson’s Disease was published. This allows an understanding of the impact of current healthcare systems on treatment burden. We included qualitative and mixed-method studies with a qualitative component that reported data from PwP and/or caregivers. Quantitative studies, qualitative data from clinical trials not related to usual care and grey literature were excluded. Two reviewers independently screened articles and extracted data. Data analysis was conducted using framework analysis. Results 1757 articles were screened, and 39 included in this review. Understanding treatment burden among PwP and their caregivers was not the primary aim in any of the included studies. They described the experiences of those living at home and during hospital or care home admissions. Issues with medications (adherence to advice, effectiveness, side-effects and timing), obtaining appropriate levels of information and healthcare provision (lack of integrated care, care coordination and person-centred approach) were among factors that exacerbate treatment burden experienced by PwP and caregivers. Both reported the impact of Parkinson’s on their daily lives, physical and mental exhaustion of self-care and limitations on their role and social activities. Conclusion This review describes considerable treatment burden experienced by PwP and their caregivers and its major influences including aspects of current healthcare provision. Future research should focus on patient-centred care with service redesign to improve this treatment burden.

Participating in cardiac rehabilitation: a systematic review and meta-synthesis of qualitative data

2011 ◽  
Vol 19 (3) ◽  
pp. 494-503 ◽  
Author(s):  
Lis Neubeck ◽  
S Ben Freedman ◽  
Alexander M Clark ◽  
Tom Briffa ◽  
Adrian Bauman ◽  
...  
Keyword(s):  
Systematic Review ◽  
Cardiac Rehabilitation ◽  
Grey Literature ◽  
System Level ◽  
Future Research ◽  
Physical Barriers ◽  
Key Issues ◽  
Study Methodology ◽  
Keyword Searching ◽  
Patient Barriers

Background: Participation in cardiac rehabilitation (CR) benefits patients with coronary heart disease (CHD), yet worldwide only some 15–30% of those eligible attend. To improve understanding of the reasons for poor participation we undertook a systematic review and meta-synthesis of the qualitative literature. Methods: Qualitative studies identifying patient barriers and enablers to attendance at CR were identified by searching multiple electronic databases, reference lists, relevant conference lists, grey literature, and keyword searching of the internet (1990–2010). Studies were selected if they included patients with CHD and reviewed experience or understanding about CR. Meta-synthesis was used to review the papers and to synthesize the data. Results: From 1165 papers, 34 unique studies were included after screening. These included 1213 patients from eight countries. Study methodology included interviews ( n = 25), focus groups ( n = 5), and mixed-methods ( n = 4). Key reasons for not attending CR were physical barriers, such as lack of transport, or financial cost, and personal barriers, such as embarrassment about participation, or misunderstanding the reasons for onset of CHD or the purpose of CR. Conclusions: There is a vast amount of qualitative research which investigates patients’ reasons for non-attendance at CR. Key issues include system-level and patient-level barriers, which are potentially modifiable. Future research would best be directed at investigating strategies to overcome these barriers.

scholarly journals Odor Recognition Memory in Parkinson's Disease: A Systematic Review

2021 ◽  
Vol 13 ◽  
Author(s):  
Tom Eek ◽  
Maria Larsson ◽  
Nil Dizdar
Keyword(s):  
Systematic Review ◽  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Recognition Memory ◽  
Recognition Task ◽  
Motor Symptom ◽  
Small Samples ◽  
Matching Task ◽  
Future Research ◽  
Odor Recognition

Olfactory impairment is a central non-motor symptom in Parkinson's disease (PD). Previous studies have demonstrated that olfactory dysfunction is associated with mental illness and impaired cognition. The frequently investigated olfactory functions are odor detection, discrimination, and identification. However, few studies have focused on odor recognition memory (ORM). ORM tasks involves episodic memory which therefore can facilitate the detection of dementia among patients with PD and consequently adjust their treatment. Thus, the aim of this systematic review is to summarize the existing research on ORM in PD. Databases and reference lists were used for data collection. Studies were included in the review if they met the eligibility criteria derived from the PICOS-framework. Quality evaluation of the studies was based on the STROBE-statement. Six studies with small samples were included in the analysis which demonstrated the scarce research on the subject. The studies targeting ORM were heterogenous and involved two main tasks: odor recognition and odor matching. The synthesis of the data demonstrated that PD patients performed significantly lower than controls on both tasks, especially on odor matching task. Only the odor recognition task exhibited a difference between patients with PD vs. Alzheimer's disease (AD). PD patients performed significantly better than AD patients. The findings based on the available limited data support the notion that odor recognition task can be of importance in identifying Parkinson's disease dementia (PDD). To investigate this hypothesis, future research needs to include larger samples of PD, PDD and AD patients executing the same odor recognition task.

scholarly journals Telerehabilitation for Communication and Swallowing Disorders in Parkinson’s Disease

2021 ◽  
pp. 1-6
Author(s):  
Deborah Theodoros
Keyword(s):  
Quality Of Life ◽  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
New Technologies ◽  
Negative Impact ◽  
Swallowing Disorders ◽  
Future Research ◽  
Patient Centered ◽  
Language Pathology

Communication and swallowing disorders are highly prevalent in people with Parkinson’s disease (PD). The negative impact of these disorders on the quality of life of the person with PD and their families cannot be underestimated. Despite a demand for speech-language pathology services to support people with PD, many barriers to services exist. Telerehabilitation provides an alternate and complementary approach to in-person therapy that is patient-centered, enables timely assessment and intervention, and facilitates continuity of care throughout the course of the disease. This review explores the telerehabilitation applications designed for the management of the communication and swallowing disorders in PD, addresses the benefits and challenges of telerehabilitation, identifies future research directions, and highlights the potential of new technologies to enhance the management of communication and swallowing disorders and quality of life for people with PD.

scholarly journals Systematic Review of Postural Sway Features in Parkinson's Disease Classification (Preprint)

2019 ◽  
Author(s):  
Wenbo Ge ◽  
Christian J. Lueck ◽  
Deborah Apthorp ◽  
Hanna Suominen
Keyword(s):  
Systematic Review ◽  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Effect Size ◽  
Postural Sway ◽  
Sampling Rate ◽  
Disease Classification ◽  
Clinical State ◽  
Future Research ◽  
Online Databases

BACKGROUND Parkinson’s Disease (PD) is the second most prevalent neurodegenerative disease. It is associated with impaired quality of life, reduced working capacity, and increased mortality. Current diagnosis and tracking lacks objectivity, resulting in late diagnosis and suboptimal treatment. OBJECTIVE Our objective is to review the existing literature to 1) assess the effectiveness of features currently being used and determine if any refinements may increase feature effectiveness, and 2) provide a summary of current methods being used. METHODS A systematic review of the literature, searching 5 online databases. An Effect Size (ES) was derived for every feature reported in each article. Effect size were combined over several articles by averaging and by pooling. The effect of sampling rate and clinical state on ES were also assessed. RESULTS 443 papers were found, reduced to 31 after review. 25 of these contained enough information to derive effect sizes. The most common features were not the most effective, that there was a relationship between sampling rate and ES, assessment when off medication best distinguished patients from controls. CONCLUSIONS This review identifies the optimal features when measuring postural sway, including sampling rate, and clinical state, to maximize ES when trying to distinguish patients with PD from controls. The findings will influence future research and assist in developing a more objective tool for the assessment of PD.

Online peer support for people with Parkinson’s Disease: a narrative synthesis systematic review (Preprint)

2021 ◽  
Author(s):  
Esther Vera Gerritzen ◽  
Abigail Rebecca Lee ◽  
Orii McDermott ◽  
Neil Coulson ◽  
Martin Orrell
Keyword(s):  
Social Support ◽  
Systematic Review ◽  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Peer Support ◽  
Physical Symptoms ◽  
Future Research ◽  
Emotional Impact ◽  
Narrative Synthesis ◽  
Personal Experiences

BACKGROUND Parkinson’s Disease (PD) significantly impacts the lives of people with the diagnosis and their families. Besides the physical symptoms, living with PD also has an emotional impact. This can result in withdrawal from social roles, increasing the risk for social isolation and loneliness. Peer support is a way to stay socially connected, share experiences, and learn new coping skills. Peer support can be provided in-person, but also online. Advantages of online peer support include that it overcomes geographical barriers, provides a form of anonymity, and support can be readily available when needed. However, the psychosocial impact of PD is still under researched and there is no systematic synthesis of online peer support for people with PD yet. OBJECTIVE (1) explore the benefits and challenges of online peer support for people with PD, and (2) identify successful elements of online peer support for people with PD. METHODS The method selected for this systematic review is a narrative synthesis. Six databases were systematically searched in April 2020 for articles published between 1989 and 2020. The quality of the included studies was assessed with the Critical Appraisal Skills Programme qualitative research checklist and the Downs and Black checklist. RESULTS 10,987 unique articles were identified through the systematic database search. Of those, 8 were included in this review. One study was of poor quality, two were of medium/ fair quality, while the rest were of good/ high quality. Online platforms included discussion forums, an online virtual world, and Facebook groups. Besides one, all papers reported on text-based communication between users. Included studies reported on sharing social support and personal experiences. Successful elements included increasing similarity between members and offering the opportunity to directly ask questions to a physician. Challenges included members leaving without a warning and PD symptoms hindering use of technology. CONCLUSIONS Peer support can improve social support and help people with PD in living meaningful and satisfying lives. Peer support is unique and cannot be replaced by family members, friends, or healthcare professionals. Online peer support can be a solution for those who do not have access to an in-person support group, or who’s PD symptoms restrict them to travel. However, research on the personal experiences of those who engage in online peer support and potential barriers in accessing it remains limited. Future research could use qualitative methods to explore these fields further.

scholarly journals Diagnosis, treatment and management of apathy in Parkinson’s disease: a scoping review

BMJ Open ◽  
2020 ◽  
Vol 10 (9) ◽  
pp. e037632
Author(s):  
Bria Mele ◽  
Shinia Van ◽  
Jayna Holroyd-Leduc ◽  
Zahinoor Ismail ◽  
Tamara Pringsheim ◽  
...  
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Scoping Review ◽  
Current Knowledge ◽  
Treatment Options ◽  
Grey Literature ◽  
Large Body ◽  
Screening Tools ◽  
Future Research ◽  
Cochrane Central Register

ObjectiveTo conduct a scoping review of the literature on apathy in Parkinson’s disease (PD), to better understand how apathy in Parkinson’s disease is diagnosed, treated and managed.MethodsMEDLINE, Embase, PsycINFO, CINAHL, Cochrane Central Register of Control Trials and Cochrane Database of Systematic Reviews were searched to 17 May 2017. An updated review was run from 17 May 2017 to 28 January 2019. The grey literature was searched using the CADTH Grey Matters tool. Original peer-reviewed research was included if it included individuals with PD and apathy. Non-original data was only included if it was in the form of meta-analysis. All information regarding diagnosis, treatment and management of PD was extracted. Citation screening and extraction were performed in duplicate.ResultsFrom 11 375 citations, 362 articles were included in the final review. The majority of included studies focussed on prevalence, with few studies examining treatment. Twenty screening tools for apathy were identified. Fifty per cent of treatment studies were randomised control trials (RCTs). RCTs applied treatment methods including: exercise, mindfulness, rotigotine (Neupro) transdermal patch and rivastigmine (Exelon).ConclusionsThis review identified a large body of literature describing current knowledge on diagnosing, treating and managing apathy in PD. Future research should aim to detect an ideal screening tool for apathy in PD, to identify the best treatment options for apathy and the variety of comorbidities it may present with and finally aim to better understand postoperative apathy in those with deep brain stimulation.

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