Rationale and design to evaluate the PRIME Parkinson care model: a prospective observational evaluation of proactive, integrated and patient-centred Parkinson care in The Netherlands (PRIME-NL)

Ypinga, Jan H.L.; Halteren, Angelika D. van; Henderson, Emily; Bloem, Bastiaan R.; Smink, A.; Tenison, Emma; Munneke, Marten; Ben‐Shlomo, Yoav; Darweesh, Sirwan K.L.

doi:10.1186/s12883-021-02308-3

Cited by 26 publications

(28 citation statements)

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“…It would be valuable to investigate specialized AHT that is delivered in parallel by more than one discipline (in one multidisciplinary package), with greater integration across therapists, eg, by providing joint clinics. Ongoing evaluations using new integrated care models, such as the PRIME‐NL or PRIME‐UK care interventions, and the evaluation of the lifetime effects of such care models should provide further evidence on this 25,26 …”

Section: Discussionmentioning

confidence: 99%

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Specialized Versus Generic Allied Health Therapy and the Risk of Parkinson's Disease Complications

et al. 2022

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Background Specialized versus generic physiotherapy (PT) reduces Parkinson's disease (PD)–related complications. It is unclear (1) whether other specialized allied heath disciplines, including occupational therapy (OT) and speech and language therapy (S<), also reduce complications; (2) whether there is a synergistic effect among multiple specialized disciplines; and (3) whether each allied health discipline prevents specific complications. Objectives To longitudinally assessed whether the level of expertise (specialized vs. generic training) of PT, OT, and S< was associated with the incidence rate of PD‐related complications. Methods We used claims data of all insured persons with PD in the Netherlands between January 1, 2010, and December 31, 2018. ParkinsonNet‐trained therapists were classified as specialized, and other therapists as generic. We used mixed‐effects Poisson regression models to estimate rate ratios adjusting for sociodemographic and clinical characteristics. Results The population of 51,464 persons with PD (mean age, 72.4 years; standard deviation 9.8) sustained 10,525 PD‐related complications during follow‐up (median 3.3 years). Specialized PT was associated with fewer complications (incidence rate ratio [IRR] of specialized versus generic = 0.79; 95% confidence interval, [0.74–0.83]; P < 0.0001), as was specialized OT (IRR = 0.88 [0.77–0.99]; P = 0.03). We found a trend of an association between specialized S< and a lower rate of PD‐related complications (IRR = 0.88 [0.74–1.04]; P = 0.18). The inverse association of specialized OT persisted in the stratum, which also received specialized PT (IRR = 0.62 [0.42–0.90]; P = 0.001). The strongest inverse association of PT was seen with orthopedic injuries (IRR = 0.78 [0.73–0.82]; P < 0.0001) and of S< with pneumonia (IRR = 0.70 [0.53–0.93]; P = 0.03). Conclusions These findings support a wider introduction of specialized allied health therapy expertise in PD care and conceivably for other medical conditions. © 2022 The Authors. Movement Disorders published by Wiley Periodicals LLC on behalf of International Parkinson and Movement Disorder Society.

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Section: Discussionmentioning

confidence: 99%

“…Ongoing evaluations using new integrated care models, such as the PRIME-NL or PRIME-UK care interventions, and the evaluation of the lifetime effects of such care models should provide further evidence on this. 25,26…”

Section: Implications For Future Researchmentioning

confidence: 99%

Specialized Versus Generic Allied Health Therapy and the Risk of Parkinson's Disease Complications

et al. 2022

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“…We predefined a target of 100 participants (grant proposal available on request). Participants were recruited from a large ongoing observational trial (PRIME-NL) 17 and from Par-kinsonNEXT (NL), an online recruitment platform for PD and parkinsonism research. Inclusion criteria were as follows: the presence of PD and self-reported gait impairment hindering usual daily activities.…”

Section: Study Populationmentioning

confidence: 99%

Evaluation of Compensation Strategies for Gait Impairment in Patients With Parkinson Disease

et al. 2022

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Background and Objectives:Compensation strategies are essential in Parkinson’s disease (PD) gait rehabilitation. However, besides external cueing, these strategies have rarely been investigated systematically. We aimed to: (1) establish the patients’ perspective on the efficacy and usability of five different compensation strategies; (2) quantify the efficacy of these strategies on spatiotemporal gait parameters; and (3) explore associations between the effects of specific strategies and patient characteristics.Methods:We recruited persons with PD and self-reported disabling gait impairments for this lab-based, within-subject study. Clinimetrics included: questionnaires (NFOG-Q, VMIQ-2, GMSI), cognitive assessments (ANT, MoCA, Brixton), and physical examinations (MDS-UPDRS III, Mini-BEST, tandem gait, rapid turns test). Gait assessment consisted of six 3-minute trials of continuous walking around a 6-meter walkway. Trials comprised: 1) baseline gait; 2) external cueing; 3) internal cueing; 4) action observation; 5) motor imagery; and 6) adopting a new walking pattern. Spatiotemporal gait parameters were acquired using 3D motion capture analysis. Strategy efficacy was determined by the change in gait variability compared to baseline gait. Associated patient characteristics were explored using regression analyses.Results:101 participants (50 men; median[range] age: 66[47-91] years) were included. The effects of the different strategies varied greatly among participants. While participants with higher baseline variability showed larger improvements using compensation strategies, participants without freezing of gait, with lower MDS-UPDRS III scores, higher balance capacity and better performance in orienting attention, also showed greater improvements in gait variability. Higher MoCA scores were associated with greater efficacy of external cueing.Discussion:Our findings support the use of compensation strategies in gait rehabilitation for PD, but highlight the importance of a personalized approach. Even patients with high gait variability are able to improve through the application of compensation strategies, but certain levels of cognitive and functional reserve seem necessary to optimally benefit from them.Classification of Evidence:This study provides Class III evidence that gait compensation strategies can be effective in persons with PD.

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“…75 current or former informal carers reacted to the recruitment announcement, of whom 40 (53%) completed the questionnaire. Third, carers participating in the PRIME Parkinson Evaluation study 33 (a prospective observational study among people with parkinsonism, informal carers and healthcare professionals in the Netherlands) were asked to participate in additional studies regarding carers burden. In total, 289 of 564 participating current informal carers in the PRIME study responded positively.…”

Section: Methodsmentioning

confidence: 99%

Using former carers’ expertise in peer support for carers of people with Parkinson’s Disease

Geerlings

Faber²,

Bloem

et al. 2022

npj Parkinsons Dis.

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Informal carers gain unique experience and knowledge when caring for a loved person. However, this knowledge often remains unused after their loved one with Parkinson’s disease (PD) has passed away. Hence, two opportunities are currently being missed: sharing this unique experience could support current informal carers and offer the bereaved former carers the option to continue to fulfil a meaningful role. This study aimed to identify the unmet needs of current carers, and to examine the interest, willingness and requirements of both current and former carers for peer-to-peer support. Data were collected from August 2020 to February 2021 through questionnaires examining (1) resources and needs for support; (2) topics for support and advice; and (3) preferences for peer-to-peer initiatives. Open questions were analyzed thematically, after open coding. In total, 141 current and 15 former informal carers participated. Current carers were mainly women (68%) and partner of a person with PD (86%). Former carers were mainly women (80%) who had cared for a partner or parent (53%; 47%) with PD. Almost half of the current carers expressed need for additional support in finding balance, changing relationships, and learning how to cope with lack of emotions and motivation. Half of the carers were positive about the opportunity to exchange experiences and knowledge with former carers. Willingness among former carers for providing peer-to-peer support was high (87%). In both groups, having a degree of commonality with peers was considered an essential requirement. These findings provide guidance for developing peer-to-peer support programs, incorporating former carers.

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Rationale and design to evaluate the PRIME Parkinson care model: a prospective observational evaluation of proactive, integrated and patient-centred Parkinson care in The Netherlands (PRIME-NL)

Cited by 26 publications

References 55 publications

Specialized Versus Generic Allied Health Therapy and the Risk of Parkinson's Disease Complications

Specialized Versus Generic Allied Health Therapy and the Risk of Parkinson's Disease Complications

Evaluation of Compensation Strategies for Gait Impairment in Patients With Parkinson Disease

Using former carers’ expertise in peer support for carers of people with Parkinson’s Disease

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