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.

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).

scholarly journals The Role of Architecture and Design in the Management of Parkinson’s Disease: A Systematic Review

2020 ◽  
Vol 10 (4) ◽  
pp. 1301-1314
Author(s):  
Joana Beisl Ramos ◽  
Gonçalo S. Duarte ◽  
Raquel Bouça-Machado ◽  
Margherita Fabbri ◽  
Tiago A. Mestre ◽  
...  
Keyword(s):  
Systematic Review ◽  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Fear Of Falling ◽  
Experimental Studies ◽  
Postural Instability ◽  
Functional Mobility ◽  
Housing Type ◽  
Architecture And Design ◽  
The Impact

Background: Parkinson’s disease (PD) is a neurological condition characterized by the development of daily disabling symptoms. Although the architecture and design of a PD patient’s environment can hinder or facilitate full participation in daily activities, their putative role in the management of these patients has received little attention to date. Objective: We conducted a systematic review to evaluate the evidence of architectural and design features in the management of people with PD. Methods: An electronic database search of observational and experimental studies was conducted in MEDLINE and Embase from inception to May 2020, with two independent reviewers identifying the studies. Falls, fear of falling, postural instability, gait impairment/disability, and functional mobility were our outcomes of interest. Results: Thirty-six studies were included, among which nineteen were observational and seventeen were experimental studies (overall participants = 2,965). Pavement characteristics, notably unstable surfaces and level differences, were found to be a major cause of falling. Ground-based obstacles and confined/narrowed spaces were found to disturb gait, increase postural instability, and decrease functional mobility. Housing type did not appear to increase risk of falling, nor to significantly explain concerns about falling. Conclusion: Findings suggest a need to adjust architectural features of the surrounding space to ensure appropriate care and provide a safe environment to PD patients. More evidence about the impact of such modifications on PD outcomes is needed.

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

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.

Perceived benefits for informal caregivers after an 8-week yoga intervention for people with Parkinson’s disease

2018 ◽  
Vol 16 (4) ◽  
pp. 23
Author(s):  
Alysha A. Walter, MS, CTRS ◽  
Marieke Van Puymbroeck, PhD, CTRS, FDRT ◽  
Brent L. Hawkins, PhD, LRT/CTRS ◽  
Kathleen Woschkolup, MD ◽  
Enrique Urrea-Mendoza, MD ◽  
...  
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Depressive Symptoms ◽  
Well Being ◽  
Future Research ◽  
Small Data ◽  
Yoga Intervention ◽  
Unpaid Care ◽  
Post Test ◽  
Positive Aspects Of Caregiving

An informal caregiver (ICG) is a family member and/or friend who provides unpaid care to an individual with a disability or chronic disease. ICGs often put their healthcare second while caring for their loved ones; and this may lead to negative impacts on their well-being. ICGs attended an 8-week therapeutic yoga intervention for their care recipients with Parkinson’s disease. ICGs who participated in the yoga classes were assessed utilizing a retrospective pretest and traditional post-test to determine the presence of depressive symptoms and positive aspects of caregiving. Although the sample size was small, data revealed improvements in depressive symptoms and positive aspects of caregiving. Focus group and individual interview data revealed five qualitative categories: yoga engagement, relationship improvement, psychological improvements, functional improvements, and community engagement. Future research should expand participation of ICGs in yoga trials to determine the extent of changes in psychosocial well-being.

scholarly journals Patient and caregiver outcomes with levodopa-carbidopa intestinal gel in advanced Parkinson’s disease

2021 ◽  
Vol 7 (1) ◽  
Author(s):  
Francesc Valldeoriola ◽  
María José Catalán ◽  
Francisco Escamilla-Sevilla ◽  
Eric Freire ◽  
Jesús Olivares ◽  
...  
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Treatment Satisfaction ◽  
Well Being ◽  
Patient Treatment ◽  
Motor Symptoms ◽  
Serious Adverse Events ◽  
Advanced Parkinson’S Disease ◽  
Anxiety Depression ◽  
The Impact

AbstractLevodopa-carbidopa intestinal gel (LCIG) has shown to be efficacious in motor and non-motor symptoms (NMS). Nevertheless, studies with patient Quality of Life (QoL) as a primary endpoint are scarce. To assess the effect of LCIG on Advanced Parkinson’s Disease (APD) patients QoL. Secondarily, the impact on motor symptoms and NMS, emotional well-being, treatment satisfaction, and caregiver QoL, stress, disease burden, anxiety, depression, and work impairment were also investigated. In this prospective, 6-month multicenter postmarketing observational study, LCIG was administered to 59 patients with APD. Endpoints were assessed using validated scales and questionnaires. LCIG significantly improved patient QoL (PDQ-39 mean change ± standard deviation from baseline, −12.8 ± 14.6; P < 0.0001), motor symptoms (UPDRS-III in “On,” −6.5 ± 11.8; P = 0.0002), NMS (NMSS, −35.7 ± 31.1; P < 0.0001), mood (Norris/Bond-Lader VAS, −6.6 ± 21.1; P = 0.0297), fatigue (PFS-16, −0.6 ± 1.0; P = 0.0003), depression (BDI-II, −5.1 ± 9.4; P = 0.0002), anxiety (BAI, −6.2 ± 9.6; P < 0.0001), and patient treatment satisfaction (SATMED-Q, 16.1 ± 16.8; P < 0.0001). There were significant correlations between the change from baseline to 6 months between PDQ-39 and UPDRS-IV, NMSS, BAI, BDI-II, AS, and PFS-16 scores, and Norris/Bond-Lader alertness/sedation factor. Caregiver anxiety also improved (Goldberg anxiety scale, −1.1 ± 1.0; P = 0.0234), but the clinical relevance of this finding is questionable. The serious adverse events reported were similar to those previously described for LCIG. In patients with APD, LCIG improves QoL, motor symptoms and NMS, emotional well-being, and satisfaction with the treatment. Improvement in patient QoL is associated with improvements in motor complications, NMS, anxiety, depression, apathy and fatigue. Improvements in patients’ QoL does not correspond with improvements in caregivers’ QoL or burden.

scholarly journals Respecting the Patient’s Choice: A Case of Possible Drug-Induced Parkinsonism

Pharmacy ◽  
2022 ◽  
Vol 10 (1) ◽  
pp. 10
Author(s):  
Megan R. Undeberg ◽  
Kimberly C. McKeirnan ◽  
David Easley
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Well Being ◽  
Medication History ◽  
Drug Induced ◽  
Alternative Agent ◽  
Dopamine Transport ◽  
Secondary Form ◽  
The Impact

This report describes a case of likely drug-induced Parkinsonism (DIP) identified by the pharmacist. A 54-year-old female patient was referred by a physician to the pharmacist in a rural, integrated care team for a comprehensive medication review (CMR) to address the patient’s concerns of possible Parkinson’s disease (PD). While PD may occur over the progression of age, medications that affect dopamine transport can also cause DIP, a secondary form of Parkinson’s disease. Although PD and DIP may be clinically indistinguishable, differentiation may be possible by reviewing a patient’s medication history for any potential causative drugs correlating to the timeline of the onset of symptoms. In this case, the pharmacist reviewed the medication profile and identified medications that could be responsible for causing DIP, specifically bupropion. The pharmacist suggested discontinuing bupropion and identifying another option for treating depression. The patient appreciated the suggestion and education, but ultimately preferred continuing her bupropion therapy instead of discontinuing therapy or changing to an alternative agent. At a follow-up meeting with the pharmacist, not only was the patient still experiencing tremors despite taking carbidopa/levodopa, but additional medications known to be potential inducers of tremors were added to her regimen. Although the pharmacist repeatedly discussed DIP with the patient and believed stopping bupropion would determine whether her Parkinsonism was PD or DIP, ultimately the patient continued taking bupropion because of concerns related to depression severity and the impact on her well-being. The patient’s wishes were respected.

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