Prediction of quality of life in people with ALS

2021 ◽  
Vol 21 (2) ◽  
pp. 5-17
Author(s):  
Anna Markella Antoniadi ◽  
Miriam Galvin ◽  
Mark Heverin ◽  
Orla Hardiman ◽  
Catherine Mooney

Amyotrophic Lateral Sclerosis (ALS) is a rare neurodegenerative disease that causes a rapid decline in motor functions and has a fatal trajectory. ALS is currently incurable, so the aim of the treatment is mostly to alleviate symptoms and improve quality of life (QoL) for the patients. The goal of this study is to develop a Clinical Decision Support System (CDSS) to alert clinicians when a patient is at risk of experiencing low QoL. The source of data was the Irish ALS Registry and interviews with the 90 patients and their primary informal caregiver at three time-points. In this dataset, there were two different scores to measure a person's overall QoL, based on the McGill QoL (MQoL) Questionnaire and we worked towards the prediction of both. We used Extreme Gradient Boosting (XGBoost) for the development of the predictive models, which was compared to a logistic regression baseline model. Additionally, we used Synthetic Minority Over-sampling Technique (SMOTE) to examine if that would increase model performance and SHAP (SHapley Additive explanations) as a technique to provide local and global explanations to the outputs as well as to select the most important features. The total calculated MQoL score was predicted accurately using three features - age at disease onset, ALSFRS-R score for orthopnoea and the caregiver's status pre-caregiving - with a F1-score on the test set equal to 0.81, recall of 0.78, and precision of 0.84. The addition of two extra features (caregiver's age and the ALSFRS-R score for speech) produced similar outcomes (F1-score 0.79, recall 0.70 and precision 0.90).

2019 ◽  
Vol 11 (1) ◽  
pp. 9-18
Author(s):  
Abdul Wakhid ◽  
Ana Puji Astuti ◽  
Maya Kurnia Dewi

Logoterapi merupakan terapi untuk menemukan makna positif dibalik sebuah kejadian yang tidak diharapkan. Logoterapi dilaksanakan secara individu maupun berkelompok dalam bentuk konseling dan berorientasi pada pencarian makna hidup individu. Tujuan logoterapi meningkatkan makna pengalaman hidup individu yang diarahkan kepada pengambilan keputusan yang bertanggung jawab. Penelitian ini dilakukan dengan menggunakan rancangan pre-experiment dengan metode pre and post test group, artinya pengumpulan data dilakukan terhadap responden untuk membandingkan kualitas hidup sebelum dan sesudah dilakukan intervensi. Teknik pengambilan sampel dilakukan dengan metode total sampling yaitu pengambilan seluruh sampel dengan tetap memperhatikan kriteria yang telah ditetapkan. Jumlah pasien yang menjalani hemodialisis di RSUD Ungaran sebanyak 21 orang dan di RSUD Ambarawa sebanyak 25 pasien. Analisis data dilakukan dengan menggunakan uji t test dependent. Hasil penelitian didapatkan bahwa dari 46 responden didapatkan rata-rata skor kualitas hidup pasien yang mejalani hemodialisis sebesar 60.22 dengan skor terrendah 55 dan skor tertinggi 69. Bahwa dari 46 responden didapatkan rata-rata skor kualitas hidup pasien yang mejalani hemodialisis sebesar 88.72 dengan skor terrendah 79 dan skor tertinggi 103. Hasil uji statistik dengan uji t test dependent diketahui ada pengaruh logoterapi terhadap kemampuan memaknai hidup pada klien yang menjalani hemodialisis di RSUD Kabupaten Semarang (p value: 0,0001). Saran perlunya peningkatan kemampuan perawat dalam memberikan layanan kesehatan termasuk pemberian atau pemanduan penemuan makna hidup bagi pasien hemodialysis, agar selain dengan hemodialysis, ada faktor internal dari pasien yang dapat dijadikan sebagai motivasi untuk sembuh dari penyakit.   Kata Kunci: Logoterapi, kualitas hidup   IMPROVE THE QUALITY OF LIFE OF PATIENTS WITH RENAL FAILURE WHO UNDERWENT HEMODIALYSIS   ABSTRACT Logotherapy is a therapy to discover the positive meaning behind an unexpected event. Logotherapy is carried out individually or in groups in the form of counseling and oriented to the search for the meaning of individual life. This study aims to improve the quality of life of patients with renal failure who underwent hemodialysis. This research was conducted by using pre-experiment with pre-post test study. The sampling technique was done by the convenience sampling. The number of patients undergoing hemodialysis as many as 46 respondents. Data analysis was done by using test t test dependent. The result showed that from 46 respondents got the mean of quality of life of patients who had hemodialysis 60.22 with lowest score 55 and highest score 69. Whereas from 46 respondents got the mean score of life quality of patients who had hemodialysis 88.72 with score the lowest score 79 and the highest score 103. The result of statistical test with t test dependent is known there is influence of logoterapi to the ability of meaningful life on client who undergo hemodialysis at Semarang Regency hospitals (p value: 0.0001). Advice on the need to improve the nurse's ability to provide health services, including the provision or guidance of the discovery of the meaning of life for hemodialysis patients, in addition to hemodialysis, there are internal factors of the patient that can be used as a motivation to recover from illness.   Keywords: Logotherapy, quality of life, kidney failure.  


2018 ◽  
Vol 5 (2) ◽  
pp. 56-63
Author(s):  
Abdul Wakhid ◽  
Estri Linda Wijayanti ◽  
Liyanovitasari Liyanovitasari

Background: Self efficacy can optimize the quality of life of clients who undergo the healing process due to chronic diseases. Individuals with higher self-efficacy move their personal and social resources proactively to maintain and improve the quality and length of their lives so that they experience a better quality of life. Objectives: the purpose of this study was to find the correlation between self efficacy and quality of life of patients with chronic kidney disease who undergo hemodialysis at RSUD Semarang Regency. Metode: This type of research was descriptive correlation with cross sectional approach. The samples in this study more 76 people with total sampling technique. The data collection tool for self efficacy was measured by General Self-Efficacy scale, for quality of life with WHOQoL-BREF. Statistical test used Kolmogorov-smirnov. Result: The result showed that self efficacy in patients with chronic kidney disease was mostly in moderate category (53,9%), quality of life in patients with chronic kidney disease was mostly in good category (68,4%). There was a correlation between self efficacy and quality of life of patients with chronic kidney disease who undergo hemodialysis at RSUD Semarang Regency, the result obtained p-value of 0.000 <α (0,05). Suggestion: Patients with chronic kidney disease can maintain good quality of life by helping to generate positive self-esteem and high self efficacy.


2017 ◽  
Vol 30 (suppl 1) ◽  
pp. 93-100
Author(s):  
Luciana Dias Belchior ◽  
Betina Santos Tomaz ◽  
Ana Paula Vasconcellos Abdon ◽  
Norberto Anizio Ferreira Frota ◽  
Daniela Gardano Bucharles Mont’Alverne ◽  
...  

Abstract Introduction: Parkinson’s disease (PD) is characterized by nigrostriatal degeneration, with dopaminergic depletion, and inflammatory and oxidative changes in the brain, leading to movement and coordination disorders. Recent studies have shown that treadmill training can be beneficial for these patients, but there is little evidence assessing the related blood parameters, such as oxidative stress and neurotrophin levels. Objective: Assess the influence of treadmill training for patients with Parkinson’s on gait, balance, Brain-Derived Neurotrophic Factor (BDNF) and reduced glutathione. Methods: Twenty-two patients with PD (Hoehn and Yahr II and III), older than 40 years, were randomly allocated to two groups: CG (n = 12) - drug treatment and IG (n = 10) - treadmill. Assessments related to functional capacity (quality of life, static and dynamic analysis of gait) and blood parameters such as GSH and BDNF were conducted before and after the eight-week intervention. Results: The demographic data of the groups were homogeneous in terms of age, sex, height, weight, time since disease onset, mini mental examination and the geriatric depression scale. Significant intergroup differences were found for the mental component summary, surface variation, latero-lateral oscillation, antero-posterior oscillation and mean velocity in the post-intervention period. The IG exhibited a strong association between BDNF and GSH, with statistically significant values. Conclusion: It was concluded that controlled treadmill walking improves static balance, quality of life and plasma BDNF and GSH levels in patients with PD.


Nutrients ◽  
2021 ◽  
Vol 13 (6) ◽  
pp. 2115
Author(s):  
Panos Papandreou ◽  
Aristea Gioxari ◽  
Frantzeska Nimee ◽  
Maria Skouroliakou

Clinical decision support systems (CDSS) are data aggregation tools based on computer technology that assist clinicians to promote healthy weight management and prevention of cardiovascular diseases. We carried out a randomised controlled 3-month trial to implement lifestyle modifications in breast cancer (BC) patients by means of CDSS during the COVID-19 pandemic. In total, 55 BC women at stages I-IIIA were enrolled. They were randomly assigned either to Control group, receiving general lifestyle advice (n = 28) or the CDSS group (n = 27), to whom the CDSS provided personalised dietary plans based on the Mediterranean diet (MD) together with physical activity guidelines. Food data, anthropometry, blood markers and quality of life were evaluated. At 3 months, higher adherence to MD was recorded in the CDSS group, accompanied by lower body weight (kg) and body fat mass percentage compared to control (p < 0.001). In the CDSS arm, global health/quality of life was significantly improved at the trial endpoint (p < 0.05). Fasting blood glucose and lipid levels (i.e., cholesterol, LDL, triacylglycerols) of the CDSS arm remained unchanged (p > 0.05) but were elevated in the control arm at 3 months (p < 0.05). In conclusion, CDSS could be a promising tool to assist BC patients with lifestyle modifications during the COVID-19 pandemic.


Neurology ◽  
2018 ◽  
Vol 91 (3) ◽  
pp. e258-e267 ◽  
Author(s):  
Jonathan R. Wolpaw ◽  
Richard S. Bedlack ◽  
Domenic J. Reda ◽  
Robert J. Ringer ◽  
Patricia G. Banks ◽  
...  

ObjectiveTo assess the reliability and usefulness of an EEG-based brain-computer interface (BCI) for patients with advanced amyotrophic lateral sclerosis (ALS) who used it independently at home for up to 18 months.MethodsOf 42 patients consented, 39 (93%) met the study criteria, and 37 (88%) were assessed for use of the Wadsworth BCI. Nine (21%) could not use the BCI. Of the other 28, 27 (men, age 28–79 years) (64%) had the BCI placed in their homes, and they and their caregivers were trained to use it. Use data were collected by Internet. Periodic visits evaluated BCI benefit and burden and quality of life.ResultsOver subsequent months, 12 (29% of the original 42) left the study because of death or rapid disease progression and 6 (14%) left because of decreased interest. Fourteen (33%) completed training and used the BCI independently, mainly for communication. Technical problems were rare. Patient and caregiver ratings indicated that BCI benefit exceeded burden. Quality of life remained stable. Of those not lost to the disease, half completed the study; all but 1 patient kept the BCI for further use.ConclusionThe Wadsworth BCI home system can function reliably and usefully when operated by patients in their homes. BCIs that support communication are at present most suitable for people who are severely disabled but are otherwise in stable health. Improvements in BCI convenience and performance, including some now underway, should increase the number of people who find them useful and the extent to which they are used.


Author(s):  
Isabel R. A. Retel Helmrich ◽  
David van Klaveren ◽  
Simone A. Dijkland ◽  
Hester F. Lingsma ◽  
Suzanne Polinder ◽  
...  

Abstract Background Traumatic brain injury (TBI) is a leading cause of impairments affecting Health-Related Quality of Life (HRQoL). We aimed to identify predictors of and develop prognostic models for HRQoL following TBI. Methods We used data from the Collaborative European NeuroTrauma Effectiveness Research in Traumatic Brain Injury (CENTER-TBI) Core study, including patients with a clinical diagnosis of TBI and an indication for computed tomography presenting within 24 h of injury. The primary outcome measures were the SF-36v2 physical (PCS) and mental (MCS) health component summary scores and the Quality of Life after Traumatic Brain Injury (QOLIBRI) total score 6 months post injury. We considered 16 patient and injury characteristics in linear regression analyses. Model performance was expressed as proportion of variance explained (R2) and corrected for optimism with bootstrap procedures. Results 2666 Adult patients completed the HRQoL questionnaires. Most were mild TBI patients (74%). The strongest predictors for PCS were Glasgow Coma Scale, major extracranial injury, and pre-injury health status, while MCS and QOLIBRI were mainly related to pre-injury mental health problems, level of education, and type of employment. R2 of the full models was 19% for PCS, 9% for MCS, and 13% for the QOLIBRI. In a subset of patients following predominantly mild TBI (N = 436), including 2 week HRQoL assessment improved model performance substantially (R2 PCS 15% to 37%, MCS 12% to 36%, and QOLIBRI 10% to 48%). Conclusion Medical and injury-related characteristics are of greatest importance for the prediction of PCS, whereas patient-related characteristics are more important for the prediction of MCS and the QOLIBRI following TBI.


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