A comprehensive person-centered approach to adult spastic paresis: a consensus-based framework

Turner-Stokes, Lynne; Ashford, Stephen; Esquenazi, Alberto; Wissel, Jörg; Ward, Anthony B.; Francisco, Gerard E.; Laíns, Jorge; Suputtitada, Areerat; Serrano, Simão; Baguley, Ian; Barnes, Michael P.; Simpson, David M.

doi:10.23736/s1973-9087.17.04808-0

Cited by 42 publications

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“…Also, as this is a population-based analysis, patients requiring only a small number of treatment cycles in the 2 years may be expected to be the better responders than those requiring more frequent injection over the same period. Nevertheless, those who received repeated injections up to 7 cycles ( n = 105) still met the criteria for a minimal clinically important change in the GAS T-score ( 10 ).…”

Section: Discussionmentioning

confidence: 99%

“…However, while changes at the level of impairment are readily seen, changes at the level of function or activity have been more difficult to demonstrate ( 7 – 9 ). This is partly due to the wide heterogeneity of patient presentation and the diversity of individual expectations and goals for treatment ( 10 ).…”

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confidence: 99%

“…Goal attainment scaling (GAS) ( 11 ) is increasingly accepted as a person-centred outcome measure for evaluating the attainment of individual goals for treatment and is now used to assess the effectiveness of rehabilitation in the areas that matter most to the patients and their caregivers ( 9 , 10 , 12 ). GAS has been shown to be sensitive to changes that occur following treatment of focal spasticity using BoNT-A ( 13 – 15 ), but a criticism of GAS is the theoretical lack of comparability in the data produced ( 16 ).…”

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confidence: 99%

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Longitudinal goal attainment with integrated upper limb spasticity management including repeat injections of botulinum toxin A: Findings from the prospective, observational Upper Limb International Spasticity (ULIS-III) cohort study

Turner‐Stokes

Jacinto²,

Fheodoroff³

et al. 2021

J Rehabil Med

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Objective To assess the longitudinal effects of integrated spasticity management incorporating repeated cycles of botulinum toxin A type A (BoNT-A) over 2 years. Methods The Upper Limb International Spasticity study was a prospective, observational, cohort study following adult patients over 2 years of integrated upper-limb spasticity management including repeat botulinum toxin (BoNT-A) treatment (any commercially-available product). Results A total of 1,004 participants from 14 countries were enrolled, of which 953 underwent ≥ 1 BoNT-A injection cycle (median 4 cycles) and had ≥ 1 goal attainment scaling assessment. Most participants (55.9–64.6% across cycles 1–6) saw a therapist after BoNT-A treatment; the most frequent therapy intervention was passive stretch (70.1–79.8% across cycles 1–6). Patients achieved their goals as expected over repeated cycles; mean cumulated goal attainment scaling T-score at 2 years was 49.5 (49.1, 49.9). Mean goal attainment scaling change scores of ≥ 10 were maintained across up to 7 cycles. Higher rates of goal achievement were seen for primary goals related to passive vs active function (86.6% vs 71.4% achievement). Standardized measures of spasticity, pain, involuntary movements, active and passive function improved significantly over the study. CONCLUSION This large, international study provides evidence for benefit of repeated cycles of BoNT-A, over 2 years captured through person-centred goal attainment and standardized measures. LAY ABSTRACT This paper presents the primary efficacy results from the Upper Limb International Spasticity (ULIS-III) study, a large international longitudinal study that explored real-life clinical practice in the integrated management of upper-limb spasticity, using botulinum toxin-A (BoNT-A) in conjunction with physical therapies. The study provides evidence for the sustained functional benefit of repeated cycles of BoNT-A. In particular, those patients who continued to receive repeated injections for up to 7 cycles in 2 years showed relevant goal attainment. Standard outcome measures generally supported the rates of goal achievement; ratings of pain, involuntary movements, active and passive function all improved significantly over each treatment cycle. The successful results from ULIS-III highlight the importance of accurate and clear goal-setting during BoNT-A treatment to help target clinical intervention and the use of focused outcome measurement.

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Section: Discussionmentioning

confidence: 99%

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confidence: 99%

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confidence: 99%

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Longitudinal goal attainment with integrated upper limb spasticity management including repeat injections of botulinum toxin A: Findings from the prospective, observational Upper Limb International Spasticity (ULIS-III) cohort study

Turner‐Stokes

Jacinto²,

Fheodoroff³

et al. 2021

J Rehabil Med

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“…Moreover, the wide range of individual treatment goals poses a challenge for the evaluation of outcomes. Individual patients often have very different expectations and needs from spasticity management ( 9 ), which have great impact on how treatment “success” can be defined and interpreted.…”

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confidence: 99%

Assessing the effectiveness of upper-limb spasticity management using a structured approach to goal-setting and outcome measurement: First cycle results from the ULIS-III Study

Turner‐Stokes

Jacinto

Fheodoroff³

et al. 2021

J Rehabil Med

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This paper presents the first results from the ULIS-III study, a large international study which explores real life clinical practice in the integrated management of upperlimb spasticity, using Botulinum Toxin-A (BoNT-A) in conjunction with physical therapies. ULIS-III is the first study to use the Upper Limb Spasticity Index (ULS Index), a system for assessing the benefits of treatment that combines recording how well the intended goals for treatment were achieved, alongside standardized measures to improve the comparability of outcomes. The data confirm good overall response rates. Importantly, when standardized measures are appropriately targeted on the individual's priority treatment goals, they demonstrate clear measurable improvements in daily function.It is also the first study to use the Upper Limb Spasticity Therapy Recording Schedule (ULSTR) to systematically record and describe the physical therapies provided. It shows how this information helped us to explore differences between BoNT-A products in the time that each injection lasts before the next one is needed.Objective: To describe the utility of a structured approach to assessing effectiveness following injection with botulinum toxin-A alongside physical therapies, within the first cycle of the Upper Limb International Spasticity-III (ULIS-III) study. Methods: ULIS-III (registered at clinicaltrials.gov as NCT02454803) is a large international, observational, longitudinal study of adults treated for upper-limb spasticity. It introduces novel methods for the structured evaluation of person-centred goal attainment alongside targeted standardized outcome measures: the Upper limb Spasticity Index, and the Upper Limb Spasticity Therapy Recording Schedule. Results: A total of 953/1,004 enrolled patients (95%) completed cycle 1. Mean overall goal attainment scaling (GAS) T scores were 49.8 (95% confidence interval 49.2-50.3; 67.1% of patients met their primary goal, with highest achievement rates for goals related to involuntary movement, (75.6%) and range of movement (74.4%). Standardized measures of spasticity, pain, involuntary movements, active and passive function, all improved significantly over the treatment cycle. Overall, 59.7% of patients saw a therapist following botulinum toxin-A injection. Interventions varied, as expected, with the set treatment goals. After controlling for concomitant therapies using the upper limb spasticity therapy recording schedule, significant differences in injection intervals (p < 0.001) were seen between the commercially-available botulinum toxin-A agents. Conclusion:The results of this study confirm the utility of the Upper Limb Spasticity Index and Upper Limb Spasticity Therapy Recording Schedule as a structured approach to capturing goal-setting, therapy inputs and outcomes assessment.

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“…According to Turner-Stokes [ 20 ], every individual sets lifelong objectives that are considered goals that take a long time to achieve (i.e., years). These long-term goals can be split into smaller medium-term achievements or intermediate milestones and short-term objectives, which permit measuring self-evolution.…”

Section: Introductionmentioning

confidence: 99%

User Centered Virtual Coaching for Older Adults at Home Using SMART Goal Plans and I-Change Model

Beristáin

Álvarez

Hors-Fraile³

et al. 2021

IJERPH

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Preventive care and telemedicine are expected to play an important role in reducing the impact of an increasingly aging global population while increasing the number of healthy years. Virtual coaching is a promising research area to support this process. This paper presents a user-centered virtual coach for older adults at home to promote active and healthy aging and independent living. It supports behavior change processes for improving on cognitive, physical, social interaction and nutrition areas using specific, measurable, achievable, relevant, and time-limited (SMART) goal plans, following the I-Change behavioral change model. Older adults select and personalize which goal plans to join from a catalog designed by domain experts. Intervention delivery adapts to user preferences and minimizes intrusiveness in the user’s daily living using a combination of a deterministic algorithm and incremental machine learning model. The home becomes an augmented reality environment, using a combination of projectors, cameras, microphones and support sensors, where common objects are used for projection and sensed. Older adults interact with this virtual coach in their home in a natural way using speech and body gestures on projected user interfaces with common objects at home. This paper presents the concept from the older adult and the caregiver perspectives. Then, it focuses on the older adult view, describing the tools and processes available to foster a positive behavior change process, including a discussion about the limitations of the current implementation.

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A comprehensive person-centered approach to adult spastic paresis: a consensus-based framework

Cited by 42 publications

References 0 publications

Longitudinal goal attainment with integrated upper limb spasticity management including repeat injections of botulinum toxin A: Findings from the prospective, observational Upper Limb International Spasticity (ULIS-III) cohort study

Longitudinal goal attainment with integrated upper limb spasticity management including repeat injections of botulinum toxin A: Findings from the prospective, observational Upper Limb International Spasticity (ULIS-III) cohort study

Assessing the effectiveness of upper-limb spasticity management using a structured approach to goal-setting and outcome measurement: First cycle results from the ULIS-III Study

User Centered Virtual Coaching for Older Adults at Home Using SMART Goal Plans and I-Change Model

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