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

Bhidayasiri, Roongroj; Panyakaew, Pattamon; Trenkwalder, Claudia; Jeon, Beomseok; Jagota, Priya; Wu, Yih Ru; Moro, Elena; Lim, Shen Yang; Shang, Huifang; Rosales, Raymond L.; Lee, Jee Young; Thit, Win Min; Tan, Eng King; Lim, Thien Thien; Tran, Ngoc Tai; Bình, Nguyễn Thanh; Phoumindr, Appasone; Boonmongkol, Thanatat; Phokaewvarangkul, Onanong; Vorachit, Somchit; Plengsri, Rachaneewan; Chokpatcharavate, Marisa; Fernández, Hubert H.

doi:10.1016/j.parkreldis.2020.02.013

Cited by 38 publications

(25 citation statements)

References 37 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Instead, we have outcome measures that are primarily a variable mix of clinical judgment, scaled rating scores, and retrospective patient reporting, merely a clinical snapshot as opposed to objective measurement of symptoms in the patient's own life circumstances. The degree and context of disability may not be seen during the span of a routine follow‐up appointment, 6 resulting in inaccurate conclusions and management decisions. Until a biomarker is found, there needs to be clinimetric testing with optimal outcome measures to allow comparisons between studies or for use in patient management in the clinical setting that are not subject to variability in clinical judgment or patient recall 7 …”

Section: Lack Of a Universal Outcome Measurementioning

confidence: 99%

Counting What Counts: How to Reach Outcomes That Truly Matter to Parkinson's Patients

Mathur¹

2021

Movement Disorders

View full text Add to dashboard Cite

Not everything that can be counted, counts and not everything that counts can be counted." This quote, often misattributed to Einstein, was in fact written by sociologist William Bruce Cameron, 1 referring to the difference between his field of study and the science of economics. The premise that it is difficult to measure what is important and that those measurements are likely to be incomplete is certainly pertinent to our work with diseases such as Parkinson's disease (PD), which lacks quantitative biomarkers to diagnose and follow its progress and response to treatment, established or experimental.Currently incurable, this progressive neurodegenerative disease has devastating effects on quality of life, insidiously impacting the physical, social, and mental health of patients. The balance between symptom control and disabling side effects becomes even more tenuous as the disease advances. Patients with advanced PD have often reached their limit in terms of disease control, with standard therapies resulting in disabling on and off periods that significantly affect their quality of life. This is currently the inevitable reality of advanced PD-disability. At this point in the disease trajectory, clinicians and patients alike look toward more advanced therapies and more invasive treatments that may prolong a patient's independence and optimize their life experience.

show abstract

Section: Lack Of a Universal Outcome Measurementioning

confidence: 99%

Counting What Counts: How to Reach Outcomes That Truly Matter to Parkinson's Patients

Mathur¹

2021

Movement Disorders

View full text Add to dashboard Cite

show abstract

“…In light of the growing interest in the use of patient-centred digital outcome (PCDO) measures in PD, it is likely that in the future there will be greater use of mobile technologies to capture data on patient perceptions [42,43]. Recently, a roadmap for implementation of PDCOs measure has been proposed to facilitate the adoption of such mobile health technologies in PD to help inform clinical management [43].…”

Section: Plos Onementioning

confidence: 99%

Impact of disease stage and age at Parkinson’s onset on patients’ primary concerns: Insights for targeted management

et al. 2020

Self Cite

View full text Add to dashboard Cite

Background The concerns of people with Parkinson’s disease (PD) about their disease are often different from the objective clinical picture and subject to various influencing factors, including disease progression. Currently our understanding of these concerns is limited, particularly in Asian countries. Methods A 50-item survey on Parkinson’s Disease Patients’ Concerns (PDPC Survey) was developed by a multidisciplinary care team. The subjective greatest concerns (most commonly concerning symptoms) of patients at a specialist centre in Bangkok, Thailand, were explored and categorised according to disease stage and age at onset of PD. Results Data for 222 patients showed concerns varied widely. Motor symptoms giving the greatest concern were problems with walking and/or balance (40.5% of patients), while the most commonly concerning non-motor symptom (NMS) was constipation (41.0%). Patterns were observed amongst different patient subgroups. Early PD patients (H&Y stage 1) were more concerned about NMS than motor symptoms, while the reverse was true for advanced PD patients. Young-onset PD patients showed significantly greater concerns than typical-onset patients about motor symptoms relating to social functioning, working and stigmatisation, such as speech (p = 0.003). Conclusions This study, in an Asian patient cohort, provides an assessment of a wide range of PD patients’ concerns, encompassing not only motor symptoms and NMS, but also treatment-related adverse events, care in the advanced stage, and the need for assistive devices. Identifying the concerns of individual PD patients and implementing a patient-centred approach to care is critical to their wellbeing and optimal outcomes. The PDPC survey can help healthcare teams build a more accurate picture of patients’ experiences to inform clinical management.

show abstract

“…Patient preconceptions regarding Parkinson's disease vary greatly and are influenced by many factors. 11 Most people have encountered someone with Parkinson's disease in their circle of acquaintance; others may have the experience of caring for a relative with Parkinson's disease. It is this picture of Parkinson's disease that patients may carry with them into the consultation room.…”

Section: Delivering the Diagnosismentioning

confidence: 99%

“…Knowledge gaps are a leading factor in patient and clinician disconnect. 11,12 Significant misinformation, as well as information, exists in the ether about Parkinson's disease. It is worthwhile highlighting that Parkinson's disease is a clinical diagnosis based on history and examination findings, and that while some tests should be performed, they often play a supportive role.…”

Section: Delivering the Diagnosismentioning

confidence: 99%

The initial diagnosis and management of Parkinson’s disease

et al. 2021

View full text Add to dashboard Cite

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

Cited by 38 publications

References 37 publications

Counting What Counts: How to Reach Outcomes That Truly Matter to Parkinson's Patients

Counting What Counts: How to Reach Outcomes That Truly Matter to Parkinson's Patients

Impact of disease stage and age at Parkinson’s onset on patients’ primary concerns: Insights for targeted management

The initial diagnosis and management of Parkinson’s disease

Contact Info

Product

Resources

About