Rehabilitation Gaps and Unmet Needs Across Disability Stages in Patients With Parkinson’s Disease: A National Survey

Dear Editor,

Parkinson’s disease (PD) is a progressive neurodegenerative disorder in which activities of daily living (ADL) become increasingly impaired; however, rehabilitation has been shown to improve ADL performance [1]. ADL-related problems in PD patients span multiple functional domains and require domain-specific expertise from physical, occupational, and speech therapists [2,3]. Therefore, rehabilitation should ideally be delivered in a proactive and preventive manner, tailored to changes in individuals’ conditions across ADL domains and severity levels [4]. However, real-world rehabilitation delivery according to the ADL domain and problem severity remains unclear. To address this gap, we conducted a nationwide survey to investigate real-world rehabilitation utilization according to each ADL domain and its severity based on patient-identified ADL-related problems in people with PD (PwPD).

This cross-sectional online survey of PwPD or their caregivers was conducted between June and September 2024. Participants were recruited through the Japan Parkinson’s Disease Association via a mailed newsletter containing a survey link and QR code. Eligible participants were community-dwelling PwPD; those with non-PD parkinsonism, other central nervous system disorders, residence in long-term care facilities, irrelevant responses or failed attention checks were excluded. Participation was voluntary with implied consent, and the study was conducted in accordance with the ethical principles of the Declaration of Helsinki and was approved by the Ethics Committee of Kio University (R7-19).

ADL-related problems were assessed using Part II of the Movement Disorder Society–Unified Parkinson’s Disease Rating Scale, a core outcome set covering 12 domains of ADL-related motor symptoms [5]. For each ADL domain, participants rated symptom severity and the perceived importance of improvement. Relevant problems were defined as very mild to mild (scores 1–2) or moderate to severe (scores 3–4) symptoms combined with an importance rating of ≥2 [6]. Rehabilitation implementation rates were calculated for each ADL domain and severity level, and participants reported whether they were currently receiving rehabilitation delivered by domain-specific professionals.

Associations between the severity of relevant ADL-related problems and rehabilitation service utilization were examined separately for each ADL domain using generalized linear models adjusted for age and disease duration. When the main effect of severity was significant, post hoc pairwise comparisons were performed. Interaction terms were not included because of sparse data. Statistical significance was set at p<0.05. Analyses were performed using SPSS v29.0 (IBM Corp.).

Of the 355 responses received, 55 were excluded based on inclusion criteria, resulting in 300 respondents eligible for analysis (Supplementary Table 1). The participant characteristics are summarized in Supplementary Table 2. The respondents were recruited from 43 of the 47 prefectures. The overall response rate was 6.0%.

The distribution of rehabilitation service utilization is shown in Supplementary Table 3, and adjusted probabilities from generalized linear models are presented in Table 1 and Supplementary Table 4. In mobility-related domains, rehabilitation utilization was significantly greater among participants with very mild to mild problems than among those without such problems. A further severity-related increase was observed in ambulation-related domains but not in bed mobility and was driven mainly by physical therapy. However, utilization remained below one-third among participants at the very mild to mild stage, and many participants with moderate to severe relevant problems received no rehabilitation.

Table 1.

Adjusted probabilities of rehabilitation service utilization according to severity of relevant problems across ADL domains

Domain	Severity of relevant problems	Adjusted estimated probabilities
		Rehabilitation (95% CI)	PT (95% CI)	OT (95% CI)	ST (95% CI)
Speech	Very mild to mild	0.20 (0.14–0.28)*	0.04 (0.02–0.09)	0.04 (0.01–0.08)	0.14 (0.09–0.21)
	Moderate to severe	0.27 (0.18–0.40)*	0.08 (0.03–0.18)	0.03 (0.01–0.12)	0.21 (0.12–0.33)*
Saliva and drooling	Very mild to mild	0.05 (0.02–0.12)	0.02 (0.00–0.07)	0.00 (0.00–0.06)	0.03 (0.01–0.08)
	Moderate to severe	0.09 (0.04–0.18)	0.03 (0.01–0.10)	0.01 (0.00–0.09)	0.07 (0.03–0.16)
Chewing and swallowing	Very mild to mild	0.10 (0.06–0.17)*	0.05 (0.02–0.11)	0.01 (0.00–0.06)	0.07 (0.03–0.13)
	Moderate to severe	0.29 (0.16–0.47)*	0.13 (0.05–0.30)	0.07 (0.02–0.25)	0.20 (0.10–0.37)*
Eating tasks	Very mild to mild	0.07 (0.04–0.11)*	0.02 (0.01–0.06)	0.04 (0.02–0.08)	0.04 (0.01–0.08)*
	Moderate to severe	0.45 (0.21–0.71)*†	0.06 (0.01–0.32)	0.00 (0.00–1.00)	0.29 (0.11–0.59)
Dressing	Very mild to mild	0.04 (0.02–0.08)	0.02 (0.01–0.05)	0.03 (0.02–0.07)	0.01 (0.00–0.04)
	Moderate to severe	0.18 (0.06–0.44)	0.02 (0.00–0.12)	0.04 (0.00–0.26)	0.00 (0.00–1.00)
Hygiene	Very mild to mild	0.06 (0.03–0.10)	0.04 (0.02–0.08)	0.05 (0.02–0.09)	0.01 (0.00–0.04)
	Moderate to severe	0.09 (0.02–0.31)	0.05 (0.01–0.28)	0.11 (0.03–0.36)	0.02 (0.00–0.18)
Handwriting	Very mild to mild	0.04 (0.02–0.09)	0.03 (0.01–0.07)	0.02 (0.00–0.05)	0.00 (0.00–0.06)
	Moderate to severe	0.08 (0.03–0.19)	0.03 (0.01–0.12)	0.07 (0.03–0.17)	0.00 (0.00–1.00)
Doing hobbies and other activities	Very mild to mild	0.08 (0.05–0.13)	0.07 (0.04–0.11)	0.03 (0.01–0.07)	0.01 (0.00–0.04)
	Moderate to severe	0.14 (0.08–0.25)	0.10 (0.05–0.20)	0.04 (0.01–0.12)	0.03 (0.01–0.10)
Turning in bed	Very mild to mild	0.17 (0.13–0.23)*	0.14 (0.10–0.20)*	0.04 (0.02–0.08)	0.00 (0.00–0.04)
	Moderate to severe	0.44 (0.25–0.65)*	0.40 (0.21–0.62)*	0.06 (0.01–0.25)	0.00 (0.00–1.00)
Tremor	Very mild to mild	0.14 (0.10–0.20)	0.10 (0.06–0.15)	0.07 (0.04–0.12)	0.01 (0.00–0.04)
	Moderate to severe	0.21 (0.09–0.40)	0.20 (0.09–0.39)	0.06 (0.02–0.24)	0.00 (0.00–1.00)
Getting out of bed, a car, or a deep chair	Very mild to mild	0.22 (0.16–0.28)	0.19 (0.14–0.25)*	0.07 (0.04–0.11)	0.00 (0.00–1.00)
	Moderate to severe	0.54 (0.38–0.68)*†	0.49 (0.33–0.64)*†	0.10 (0.04–0.22)	0.00 (0.00–0.09)
Walking and balance	Very mild to mild	0.41 (0.33–0.49)*	0.37 (0.29–0.45)*	0.14 (0.09–0.20)	0.01 (0.00–0.05)
	Moderate to severe	0.72 (0.62–0.80)*	0.67 (0.57–0.76)*†	0.25 (0.17–0.35)*	0.02 (0.01–0.08)
Freezing	Very mild to mild	0.28 (0.21–0.37)*	0.23 (0.16–0.32)*	0.08 (0.04–0.15)	0.00 (0.00–0.05)
	Moderate to severe	0.57 (0.46–0.68)*†	0.57 (0.46–0.68)*†	0.13 (0.07–0.22)	0.00 (0.00–0.04)

Adjusted estimated probabilities (95% CI) were derived from generalized linear models with a binomial distribution and logit link function, adjusting for age and disease duration.

^*p<0.05 compared with participants with no relevant problems.

^†p<0.05 compared with participants with very mild to mild relevant problems.

ADL, activities of daily living; PT, physical therapy; OT, occupational therapy; ST, speech therapy; CI, confidence interval.

Among the nonmobility domains, rehabilitation utilization for speech, chewing and swallowing, and eating was higher among participants at the very mild to mild stage than among those without problems but remained below 50%, even among participants at the moderate to severe stage. In contrast, utilization of other nonmobility domains—including saliva and drooling, dressing, hygiene, handwriting, hobbies, and tremor—showed no association with severity and remained mostly below 20%. Utilization of occupational and speech therapy did not increase with severity in most nonmobility domains.

This nationwide survey identified clear and domain-specific gaps in rehabilitation service utilization across ADL-related problem severity among PwPD. Rehabilitation utilization increased with severity in some mobility-related domains, particularly those directly related to ambulation, but remained limited in absolute terms. Although mobility-related problems are primarily targets of physical therapy and its effectiveness has been well established [1], rehabilitation utilization varies across mobility domains. For some domains, such as bed mobility, rehabilitation utilization increased at the early stage but did not further increase with increasing severity, indicating heterogeneity in rehabilitation delivery within mobility-related ADLs.

In contrast to mobility-related domains, rehabilitation utilization in nonmobility domains showed limited responsiveness to problem severity. For domains related to survival and communication, such as chewing and swallowing, eating, and speech, utilization increased in participants at the very mild to mild stage but remained low even in those at the moderate to severe stage. In other nonmobility domains, including dressing, hygiene, handwriting, hobbies, tremor, and saliva and drooling, rehabilitation utilization increased little with increasing severity and remained low. These findings indicate substantial unmet rehabilitation needs in nonmobility ADLs.

Many of these nonmobility domains are typically addressed by occupational and speech therapy [2,3]. However, rehabilitation utilization in domains commonly targeted by speech therapy, such as swallowing and communication, did not increase even at the early stage. Similarly, rehabilitation utilization in self-care–related domains frequently targeted by occupational therapy, including dressing and hygiene, increased little with increasing severity. These patterns may reflect limitations in the availability or implementation of occupational and speech therapy services.

Although evidence supports the effectiveness of multidisciplinary rehabilitation in improving ADL-related disability among PwPD [1,7], this nationwide survey demonstrated that such interventions are not sufficiently implemented from the early stage in real-world clinical practice. Clear gaps and unmet needs were identified according to the ADL domain and problem severity, particularly in nonmobility domains typically addressed by occupational and speech therapy. These findings underscore the importance of accurately identifying patient-specific ADL-related problems and delivering timely, domain specific, multidisciplinary rehabilitation.

Several limitations should be acknowledged. The relatively low response rate and the online survey design may have introduced selection bias, limiting generalizability. As the diagnosis was self-reported, misclassification cannot be completely excluded. In addition, information on rehabilitation type, frequency, duration, and intensity was unavailable. Moreover, factors related to health care access, socioeconomic conditions, and patient-related issues—such as referral practices, financial or logistical barriers, access to specialized services, and patient awareness or preferences—were not examined and may partly explain the lack of rehabilitation utilization.

Supplementary Materials

The Data Supplement is available with this article at https://doi.org/10.14802/jmd.26024.

Supplementary Table 1.

Reasons for exclusion of respondents (N=55)

Supplementary Table 2.

Participant characteristics (N=300)

Supplementary Table 3.

Utilization of rehabilitation services for relevant problems in ADL domains

Supplementary Table 4.

Main effects of severity of relevant ADL-related problems on rehabilitation service utilization across domains (generalized linear models)