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).

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.

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.

scholarly journals Clinical Lycanthropy, Neurobiology, Culture: A Systematic Review

2021 ◽  
Vol 12 ◽  
Author(s):  
Sélim Benjamin Guessoum ◽  
Laelia Benoit ◽  
Sevan Minassian ◽  
Jasmina Mallet ◽  
Marie Rose Moro
Keyword(s):  
Systematic Review ◽  
Evaluation System ◽  
Psychotic Disorders ◽  
Right Hemisphere ◽  
Case Reports ◽  
Future Research ◽  
Patient Centered ◽  
Efficient Treatment ◽  
Cultural Aspects ◽  
Centered Care

Background: Culture can affect psychiatric disorders. Clinical Lycanthropy is a rare syndrome, described since Antiquity, within which the patient has the delusional belief of turning into a wolf. Little is known on its clinical or therapeutic correlates.Methods: We conducted a systematic review (PRISMA) on PubMed and Google Scholar, until January 2021. Case reports, data on neurobiological hypotheses, and cultural aspects were included. Language was not restricted to English.Results: Forty-three cases of clinical lycanthropy and kynanthropy (delusion of dog transformation) were identified. Associated diagnoses were: schizophrenia, psychotic depression, bipolar disorder, and other psychotic disorders. Antipsychotic medication may be an efficient treatment for this rare transnosographic syndrome. In case of depression or mania, the treatment included antidepressants or mood regulators. The neuroscientific hypotheses include the conception of clinical lycanthropy as a cenesthopathy, as a delusional misidentification of the self-syndrome, as impairments of sensory integration, as impairments of the belief evaluation system, and right hemisphere anomalies. Interestingly, there is a clinical overlap between clinical lycanthropy and other delusional misidentification syndromes. Clinical lycanthropy may be a culture-bound syndrome that happens in the context of Western cultures, myths, and stories on werewolves, and today's exposure to these narratives on cultural media such as the internet and the series. We suggest the necessity of a cultural approach for these patients' clinical assessment, and a narrative and patient-centered care.Conclusions: Psychiatric transtheoretical reflections are needed for complementaristic neurobiological and cultural approaches of complex delusional syndromes such as clinical lycanthropy. Future research should include integrative frameworks.

Delivering patient-centered care in Parkinson's disease: Challenges and consensus from an international panel

2020 ◽  
Vol 72 ◽  
pp. 82-87 ◽  
Author(s):  
Roongroj Bhidayasiri ◽  
Pattamon Panyakaew ◽  
Claudia Trenkwalder ◽  
Beomseok Jeon ◽  
Nobutaka Hattori ◽  
...  
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Patient Centered Care ◽  
Patient Centered ◽  
International Panel ◽  
Centered Care

scholarly journals Health assets in a global context: a systematic review of the literature

BMJ Open ◽  
2019 ◽  
Vol 9 (2) ◽  
pp. e023810 ◽  
Author(s):  
Tine Van Bortel ◽  
Nuwan Darshana Wickramasinghe ◽  
Antony Morgan ◽  
Steven Martin
Keyword(s):  
Systematic Review ◽  
Clinical Care ◽  
Grey Literature ◽  
Theoretical Perspective ◽  
Added Value ◽  
Bibliographic Databases ◽  
Future Research ◽  
Global Context ◽  
Wide Range ◽  
Health Assets

ObjectiveTo provide an up-to-date overview of health assets in a global context both from a theoretical perspective and its practical applications to address health inequalities and achieve sustainable health.DesignA systematic review was conducted according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines.Data sourcesA comprehensive search, including 10 electronic bibliographic databases and hand searches, was undertaken to capture the wide range of terms associated with ‘health assets’ and ‘asset-based approaches to health’.Eligibility criteriaAny peer-reviewed published and grey literature in English related to ‘health assets’ or ‘assets’ in a ‘health’ context was included without any date, country or study design restrictions and the quality of evidence was appraised according to the Oxford Level of Evidence.OutcomesA broad consideration of all outcome measures including clinical outcomes, patient-level, community-level and population-level impacts and costs, was adopted.Results478 publications were included. Health assets were researched in 40 countries, predominantly in the West such as the USA and the UK. A number of broad health assets were identified including community and individual assets. Even though research was conducted in a number of different settings, most occurred in the community, clinical, care or educational settings. A wide variety of interventions and approaches were implemented, most commonly related to education and/or training, asset mapping or asset approaches.ConclusionsGlobally, authors most often referred to general ‘health assets’, ‘assets’ or some form of ‘community asset’ in relation to health. Overall, the idea of health assets is framed within a positive paradigm focusing on health creation rather than curative approaches. The sustained credibility of the global ‘health assets’ literature depends on future research on definitional, theoretical and evaluative issues in order to convince policy-makers and service commissioners of its necessity and added value to the traditional deficit approach.

scholarly journals Incorporating the Principles of Self-Management into Treatment of Dysarthria Associated with Parkinson's Disease

2017 ◽  
Vol 38 (03) ◽  
pp. 210-219 ◽  
Author(s):  
Carolyn Baylor ◽  
Deanna Britton ◽  
Kathryn Yorkston
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Current Treatment ◽  
Patient Perspectives ◽  
Self Management ◽  
Patient Centered ◽  
Treatment Expectations ◽  
Before And After ◽  
Centered Care ◽  
Speech Loudness

AbstractAlthough understanding patient perspectives on treatment is a major component of patient-centered care, little is known about patient perspectives related to dysarthria treatment in Parkinson's disease (PD). This article attempts to explore the perspective of patients with dysarthria associated with PD by interviewing them before and after treatment. Treatment expectations and experiences are summarized along with a discussion of how patients are using the tools they learned once treatment was completed. Comments about treatment were generally positive and suggested increased awareness and improved speech loudness. However, areas for improvement were also identified including: (1) treatment was not addressing some communication problems that were of concern to patients; (2) therapy programs were not enjoyable; and (3) it was difficult to maintain gains after therapy ended. Principles of self-management are reviewed to address some of the shortcomings of current treatment approaches.

scholarly journals Beyond patient-centered care: person-centered care for Parkinson’s disease

2016 ◽  
Vol 2 (1) ◽  
Author(s):  
Stephen A Buetow ◽  
Pablo Martínez-Martín ◽  
Mark A Hirsch ◽  
Michael S Okun
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Patient Centered Care ◽  
Patient Centered ◽  
Person Centered Care ◽  
Centered Care

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.

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.

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