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

Abstract

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.

Technological evaluation of strategies to get out of bed by people with Parkinson's disease: Insights from multisite wearable sensors

“…From a patient's perspective, difficulty in getting out of bed is their most common concerning motor symptom, representing a common functional limitation that is negatively associated with the patient's quality of life ( 9 , 19 , 25 , 26 ). From a carer's perspective, getting out of bed is the most frequent activity that patients require assistance from them to achieve and increases carer's burden ( 18 , 53 ).…”

“…While the evidence is clear that nocturnal hypokinesia, when considered as a whole, negatively affects sleep quality, sleep efficiency, and quality of life of patients with PD ( 15 , 16 ), difficulty in getting out of bed, as an isolated symptom, was rated as an emerging disability amongst patients with PD after a 2-year subsequent follow-up, and was the most frequent activity of daily living (ADL) to be assisted by carers of patients with PD ( 17 , 18 ). Similarly, another separate study identified the problem of getting out of bed as a factor associated with the presence of a carer, and it was rated by 39.6% of the patients with PD as their commonly concerning motor symptoms ( 19 ). When getting out of bed is considered as a spectrum of early morning off (EMO), it was found to be very common, affecting 72.4% of patients with PD, with bradykinesia or rigidity and fatigue or sleepiness the most common motor and non-motor symptoms, respectively ( 20 ).…”

Age Cutoff for Early‐Onset Parkinson's Disease: Recommendations from the International Parkinson and Movement Disorder Society Task Force on Early Onset Parkinson's Disease

“…Many patients with PD are most bothered by the perception that others might have of their impairment than by their impairment itself. 141,142 This higher level of stigma in patients with EOPD 17,143 seems to stem essentially from dysarthria, tremor, dyskinesia, and impact of the motor symptoms on activities of daily living such as eating and washing 144 and can manifest as a reluctance to seek help and ask for adjustments at work, which in turn decreases the chances of staying employed.…”

“…In a prospective 50-item survey aimed at clarifying patients' concerns in 222 individuals with PD, patients with EOPD (AAO < 50) reported significantly more concerns about difficulty with speaking (P = 0.003), washing and bathing (P = 0.04), or eating (P = 0.003) as well as with shaking (P = 0.005), dyskinesia (P = 0.001), low and/or depressed mood (P = 0.01), and anxiety and/or panic attacks (P < 0.001)factors more likely to impact social or professional functioningas greater concerns than typical-onset patients with PD. 144 Finally, EOPD may present a challenge to relationships. Marriages or relationships of shorter duration can be more vulnerable to the strain a chronic illness can impose than those of longer duration, 145 with significantly worse marital discord scores in couples with EOPD than in those with LOPD in 1 study comparing 75 patients with EOPD (<50 years) and 66 patients with LOPD.…”

Improving functional disability in patients with tremor: A clinical perspective of the efficacies, considerations, and challenges of assistive technology

“…While there are no dedicated studies that determine the need of AT in patients with tremor, it is, as they are predominantly elderly, our own view that many of these barriers are likely to influence the adoption of AT in these patients. In a separate study that explored the need of AT in patients with PD, a shower chair was considered the most needed device (38.3%), followed by almost the same number of patients who reported the need for a walking stick (36.5%), and anti-slip mat (34.7%) [78]. However, AT for tremor (tremor suppression spoon and gloves) was considered as needed by only 7% of PD patients, which may reflect the abovementioned barriers, coupled to a lack of awareness by both patients and healthcare professionals, or lack of recommendation by treating physicians.…”