scholarly journals Healthcare needs, expectations, utilization, and experienced treatment effects in patients with hereditary spastic paraplegia: a web-based survey in the Netherlands

2021 ◽  
Vol 16 (1) ◽  
Author(s):  
Hans C. J. W. Kerstens ◽  
Bas J. H. Van Lith ◽  
Maarten J. Nijkrake ◽  
Bert J. M. De Swart ◽  
Laura A. C. Van den Bemd ◽  
...  
Keyword(s):  
The Netherlands ◽  
Hereditary Spastic Paraplegia ◽  
Treatment Effects ◽  
Pharmacological Intervention ◽  
Motor Symptoms ◽  
Spastic Paraplegia ◽  
Web Based ◽  
Healthcare Needs ◽  
Non Motor Symptoms ◽  
Experienced Treatment

Abstract Background We aimed to identify healthcare needs, expectations, utilization, and the experienced treatment effects in a population of Dutch patients with hereditary spastic paraplegia (HSP). Methods We distributed an online questionnaire among 194 adult persons with HSP in the Netherlands, of which 166 returned a fully completed version. After applying predefined exclusion criteria, 109 questionnaires from persons with pure HSP were analysed. Results Healthcare needs and expectations were primarily focused on the relief of muscle stiffness and reduction of balance and gait impairments (65–80%), but many participants also expressed needs regarding relief of non-motor symptoms (e.g. pain, fatigue), emotional problems, impaired sleep and self-care capacity, and participation problems (> 60%). Remarkably, despite these frequent needs, relatively few participants (< 33%) expected to be able to improve in these additional domains. Rehabilitation physicians and physiotherapists were more frequently consulted than neurologists and occupational therapists, respectively. Physiotherapy was the most often proposed non-pharmacological intervention (85%), followed by orthopedic footwear (55%) and splints (28%). Approximately one third of the participants was never offered any pharmacological (spasmolytic) treatment. Spasmolytic oral drugs, injections, and intrathecal baclofen were given to 41%, 26%, and 5% of the participants, respectively. Independent of the type of pharmacological intervention, 35–46% of these participants experienced decreased spastiticy and improved general fitness. Other experienced effects differed per type of intervention. Conclusions Based on this web-based survey in the Netherlands, there seems to be ample room for improvement to meet and attune the healthcare needs and expectations of people with HSP concerning both their motor and non-motor symptoms and functional limitations. In addition, the provision of adequate information about non-pharmacological and pharmacological interventions seems to be insufficient for many patients to allow shared decision making. These conclusions warrant a more pro-active attitude of healthcare providers as well as an interdisciplinary approach for a substantial proportion of the HSP population, also involving professionals with a primary occupational and/or psychosocial orientation.

P61 Non-motor symptoms are relevant and possibly treatable in hereditary spastic paraplegia type 4 (SPG4)

2020 ◽  
Vol 131 (4) ◽  
pp. e209
Author(s):  
T.W. Rattay ◽  
A. Boldt ◽  
M. Völker ◽  
S. Wiethoff ◽  
H. Hengel ◽  
...  
Keyword(s):  
Hereditary Spastic Paraplegia ◽  
Motor Symptoms ◽  
Spastic Paraplegia ◽  
Non Motor Symptoms

scholarly journals Botulinum toxin for hereditary spastic paraplegia: effects on motor and non-motor manifestations

2018 ◽  
Vol 76 (3) ◽  
pp. 183-188 ◽  
Author(s):  
Katiane R. Servelhere ◽  
Ingrid Faber ◽  
Alberto Martinez ◽  
Renato Nickel ◽  
Adriana Moro ◽  
...  
Keyword(s):  
Botulinum Toxin ◽  
Hereditary Spastic Paraplegia ◽  
Botulinum Toxin Type A ◽  
Botulinum Toxin Type ◽  
Motor Symptoms ◽  
Spastic Paraplegia ◽  
Adductor Muscles ◽  
Before And After ◽  
Motor Improvement ◽  
Non Motor Symptoms

ABSTRACT Motor and non-motor manifestations are common and disabling features of hereditary spastic paraplegia (HSP). Botulinum toxin type A (Btx-A) is considered effective for spasticity and may improve gait in these patients. Little is known about the effects of Btx-A on non-motor symptoms in HSP patients. Objective To assess the efficacy of Btx-A on motor and non-motor manifestations in HSP patients. Methods Thirty-three adult patients with a clinical and molecular diagnosis of HSP were evaluated before and after Btx-A injections. Results Mean age was 41.7 ± 13.6 years and there were 18 women. Most patients had a pure phenotype and SPG4 was the most frequent genotype. The Btx-A injections resulted in a decrease in spasticity at the adductor muscles, and no other motor measure was significantly modified. In contrast, fatigue scores were significantly reduced after Btx-A injections. Conclusion Btx-A injections resulted in no significant functional motor improvement for HSP, but fatigue improved after treatment.

scholarly journals Experienced complaints, activity limitations and loss of motor capacities in patients with pure hereditary spastic paraplegia: a web-based survey in the Netherlands

2020 ◽  
Vol 15 (1) ◽  
Author(s):  
Bas J. H. van Lith ◽  
Hans C. J. W. Kerstens ◽  
Laura A. C. van den Bemd ◽  
Maria W. G. Nijhuis-van der Sanden ◽  
Vivian Weerdesteyn ◽  
...  
Keyword(s):  
The Netherlands ◽  
Hereditary Spastic Paraplegia ◽  
Activity Limitations ◽  
Spastic Paraplegia ◽  
Web Based

Non-motor symptoms in patients with hereditary spastic paraplegia caused by SPG4 mutations

2016 ◽  
Vol 23 (2) ◽  
pp. 408-411 ◽  
Author(s):  
K. R. Servelhere ◽  
I. Faber ◽  
J. A. M. Saute ◽  
M. Moscovich ◽  
A. D'Abreu ◽  
...  
Keyword(s):  
Hereditary Spastic Paraplegia ◽  
Motor Symptoms ◽  
Spastic Paraplegia ◽  
Non Motor Symptoms

Non-motor symptoms are relevant and possibly treatable in hereditary spastic paraplegia type 4 (SPG4)

2019 ◽  
Vol 267 (2) ◽  
pp. 369-379 ◽  
Author(s):  
Tim W. Rattay ◽  
Andreas Boldt ◽  
Maximilian Völker ◽  
Sarah Wiethoff ◽  
Holger Hengel ◽  
...  
Keyword(s):  
Hereditary Spastic Paraplegia ◽  
Motor Symptoms ◽  
Spastic Paraplegia ◽  
Non Motor Symptoms

scholarly journals Social Listening – Revealing Parkinson’s Disease over Day and Night

2020 ◽  
Author(s):  
Hui Zhang ◽  
Fanwen Meng ◽  
Xingyu Li ◽  
Yali Ning ◽  
Meng Cai
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Motor Symptoms ◽  
Motor Complications ◽  
Healthcare Needs ◽  
Unmet Healthcare Needs ◽  
Sentiment Score ◽  
Negative Sentiment ◽  
Non Motor Symptoms ◽  
Social Listening

Abstract Background: Nocturnal symptoms in Parkinson’s disease and their related burdens on patients are often treated after management of daytime manifestations. In order to better understand the unmet needs of nocturnal symptoms management, we sought to analyze the characteristics of nocturnal symptoms and their associated burden from patients’ perspectives in 2016 to 2018 and explore whether there were any changes in participants' needs over time across 3 years. Overall symptoms (occurring at day or night) were collected to contrast and compare whether the unmet healthcare needs related to nocturnal symptoms and to overall symptoms are different.Methods: We used a contemporary Social Listening big-data technique to analyze large amounts of Parkinson’s disease symptoms in patient-doctor and patient-patient dialogues available from social media platforms in 2016 to 2018 in China. These symptoms were classified as either overall symptoms or nocturnal symptoms. We used share of voice (SOV) of symptoms as a proportion of total dialogues per year to reflect the characteristics of symptoms from patients’ perspectives. Negative sentiment score of symptoms was analyzed to find out their related burden on patients. Results: We found that SOV for overall motor symptoms was 79% and had not increased between 2016 and 2018 (79%, p = 0.5), but SOV for non-motor symptoms (69% in 2018) had grown by 7% in 2018 (p < 0.01). SOV for motor complications was 9%, and had increased by 6% (p < 0.01) by 2018. The SOV of motor symptoms was significantly larger than non-motor symptoms and motor complications (p < 0.01) in each year. The SOV of non-motor symptoms was larger than that of motor complication (p < 0.01). For nocturnal symptoms, 45% of the analyzed PD population reported nocturnal symptoms in 2018, growing by 6% from 2016 (p < 0.01). SOV for nocturnal-occurring motor symptoms was higher than most non-motor symptoms (except insomnia). However, non-motor symptoms had the higher increases in SOV. Non-motor symptoms evoked higher negative sentiment regardless of whether they occurred during the day or night. For symptoms that can occur at either day or night, each nocturnal symptom was rated with a higher negative sentiment score than the same symptom during the day, regardless of the type of symptom.Conclusions: The growing share of voice and the greater negative sentiment of nocturnal symptoms from patients’ perspectives suggest that management of nocturnal symptoms is an unmet need of patients with Parkinson’s disease. A greater emphasis on detecting nocturnal symptoms and treating them with 24-hour care is encouraged.

scholarly journals Exercise for people with Parkinson’s: a practical approach

2018 ◽  
Vol 18 (5) ◽  
pp. 399-406 ◽  
Author(s):  
Bhanu Ramaswamy ◽  
Julie Jones ◽  
Camille Carroll
Keyword(s):  
Quality Of Life ◽  
Support Network ◽  
Pharmacological Intervention ◽  
Motor Symptoms ◽  
Independent Mobility ◽  
Growing Body ◽  
Exercise Programmes ◽  
Symptom Progression ◽  
Non Motor Symptoms

Exercise is key to a healthy and productive life. For people with Parkinson’s, exercise has reported benefits for controlling motor and non-motor symptoms alongside the use of pharmacological intervention. For example, exercise prolongs independent mobility and improves sleep, mood, memory and quality of life, all further enhanced through socialisation and multidisciplinary team support. Recent research suggests that optimally prescribed exercise programmes following diagnosis may alter neurophysiological processes, possibly slowing symptom progression.Given its benefits, professionals should encourage and motivate people with Parkinson’s to exercise regularly from the time of diagnosis and provide guidance on what exercise to do. We provide examples of how the growing body of evidence on exercise for people with Parkinson’s is revolutionising the services they are provided. We also highlight new resources available to help the wider support network (people such as volunteers, partners and friends of people with Parkinson’s) with an interest in exercise promote a consistent message on the benefits of exercise.

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