Development of an Explainable Clinical Decision Support System for the Prediction of Patient Quality of Life in Amyotrophic Lateral Sclerosis

The 36th ACM/SIGAPP Symposium on Applied Computing (SAC 2021), Virtual Event, 22-26 March 2021Amyotrophic Lateral Sclerosis (ALS) is a rare neurodegenerative and currently incurable disease. It causes a rapid decline in motor functions and has a fatal trajectory. The aim of the treatment is mostly to alleviate symptoms and improve the patient’s quality of life (QoL). The goal of this study is to develop a Clinical Decision Support System (CDSS) in order to alert clinicians when a patient is at risk of experiencing a low QoL, so that they are better supported. The source of the 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. The method we used for the development of the predictive models was Extreme Gradient Boosting (XGBoost), which was compared to a logistic regression baseline model. We used the SHAP (SHapley Additive exPlanations) values 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 by three features, with a F1-score on the test set equal to 0.81, a recall score of 0.78, and a precision score of 0.84, while, the addition of two features produced similar outcomes (0.79, 0.70 and 0.90 respectively). The three most important features were the age at disease onset, ALSFRS score for orthopnoea and the caregiver’s status pre-caregiving.European Commission - European Regional Development FundScience Foundation IrelandHealth Research BoardAmerican ALS Associatio

Caregiving in ALS - A mixed methods approach to the study of Burden

Background Caregiver burden affects the physical, psychological and emotional well-being of the caregiver. The purpose of this analysis was to describe an informal caregiver cohort (n?=?81), their subjective assessment of burden and difficulties experienced as a result of providing care to people with Amyotrophic Lateral Sclerosis (ALS). Methods Using mixed methods of data collection and analysis, we undertook a comprehensive assessment of burden and difficulties associated with informal caregiving in ALS. As part of a semi-structured interview a series of standardised measures were used to assess quality of life, psychological distress and subjective burden, and in an open-ended question caregivers were asked to identify difficult aspects of their caregiving experience. Results The quantitative data show that psychological distress, hours of care provided and lower quality of life, were significant predictors of caregiver burden. From the qualitative data, the caregiving difficulties were thematised around managing the practicalities of the ALS condition, the emotional and psychosocial impact; limitation and restriction, and impact on relationships. Conclusions The collection and analysis of quantitative and qualitative data better explores the complexity of caregiver burden in ALS. Understanding the components of burden and the difficulties experienced as a result of caring for someone with ALS allows for better supporting the caregiver, and assessing the impact of burden on the care recipient

Patient journey to a specialist amyotrophic lateral sclerosis multidisciplinary clinic: an exploratory study.

BACKGROUND: The multidisciplinary approach in the management of Amyotrophic Lateral Sclerosis (ALS) has been shown to provide superior care to devolved care, with better survival, improved quality of care, and quality of life. Access to expert multidisciplinary management should be a standard for patients with ALS. This analysis explores the patient journey from symptom onset and first engagement with health services, to the initial visit to a specialist ALS Multidisciplinary Clinic (MDC) in Dublin, Ireland. METHODS: A retrospective exploratory multi-method study details the patient journey to the MDC. Data from medical interviews and systematic chart review identifies interactions with the health services and key timelines for thirty five new patients presenting with a diagnosis of ALS during a 6 month period in 2013. RESULTS: The time from first symptom to diagnosis was a mean of 16 months (median 13 months), with a mean interval of 19 months (median 14.6) from first symptoms to arrival at the MDC. The majority of patients were seen by a general practitioner, and subsequently by neurology services. There was an average of four contacts with health services and 4.8 investigations/tests, prior to their first Clinic visit. On the first visit to the MDC patients are linked into an integrated \u27system\u27 that can provide specialist care and link with voluntary, palliative and community services as required. CONCLUSIONS: Engagement with a multidisciplinary team has implications for service utilization and quality of life of patients and their families. We have demonstrated that barriers exist that delay referral to specialist services. Comprehensive data recording and collection, using multiple data sources can reconstruct the timelines of the patient journey, which can in turn be used to identify pathways that can expedite early referral to specialist services

Needs of informal caregivers across the caregiving course in amyotrophic lateral sclerosis: a qualitative analysis

Objectives: Amyotrophic lateral sclerosis (ALS), also known as motor neuron disease (MND), is a debilitating terminal condition. Informal caregivers are key figures in ALS care provision. The physical, psychological and emotional impact of providing care in the home requires appropriate assistance and support. The objective of this analysis is to explore the needs of informal ALS caregivers across the caregiving course. Design: In an open-ended question as part of a semistructured interview, caregivers were asked what would help them in their role. Interviews took place on three occasions at 4-month to 6-month intervals. Demographic, burden and quality of life data were collected, in addition to the open-ended responses. We carried out descriptive statistical analysis and thematic analysis of qualitative data. Setting and participants: Home interviews at baseline (n=81) and on two further occasions (n=56, n=41) with informal caregivers of people with ALS attending the National ALS/MND Clinic at Beaumont Hospital, Dublin, Ireland. Results: The majority of caregivers were family members.Hours of care provided and caregiver burden increased across the interview series. Thematic analysis identified what would help them in their role, and needs related to external support and services, psychological-emotional factors, patient-related behaviours, a cure and ?nothing?. Themes were interconnected and their prevalence varied across the interview time points. Conclusion: This study has shown the consistency and adaptation in what caregivers identified as helpful in their role, across 12?18 months of a caregiving journey. Support needs are clearly defined, and change with time and the course of caregiving. Caregivers need support from family, friends and healthcare professionals in managing their tasks and the emotional demands of caregiving. Identifying the specific needs of informal caregivers should enable health professionals to provide tailored supportive interventions

Care, burden and self-described positive aspects of caring in amyotrophic lateral sclerosis: an exploratory, longitudinal, mixed-methods study

Objectives To explore factors associated with care burden and the self-described positive aspects of caring for a person living with amyotrophic lateral sclerosis (ALS) over time.Design Exploratory longitudinal mixed-methods study.Setting A national multidisciplinary tertiary clinic in Dublin, Ireland.Participants Participants were informal caregivers of people living with ALS (plwALS) attending the national ALS/motor neuron disease Clinic Dublin. This study focuses on informal caregivers who completed five consecutive interviews (n = 17) as part of a larger multisite study, over the course of 2.5 years. Participants were over the age of 18. Formal paid caregivers were not included.Outcome measures Data were collected on demographic and well-being measures and an open-ended question asked about positive aspects of caregiving. Relevant statistical analysis was carried out on quantitative data and qualitative data were analysed thematically.Results The caregivers in this study were predominantly female and spouse/partners of the plwALS. Hours of care provided and self-assessed burden increased substantially over time, psychological distress reached clinical significance and quality of life remained relatively stable. Positive aspects identified were thematised as meaning in life and personal satisfaction and varied in relative frequency across phases of the caregiving trajectory.Conclusions The co-occurrence of negative and positive factors influences the experiences of informal caregivers in ALS. It is important to explore and acknowledge positive aspects, how they develop and are sustained in order to inform supportive services. The cyclical adaptation identified in this study provides evidence for time sensitive targeted supports

Reactions to Imagery Generated Using Computational Aesthetic Measures

This article examines whether textural generation system imagery evolved with computational aesthetic support can be judged as having aesthetic attributes, both when knowing and not knowing its true origin. Such a generation, depicting a digital landscape, is offered to two groups of participants to appraise. It is hypothesized that there will be no statistically significant difference between the groups on their appraisal of the image. Results from statistical analysis prove to be consistent with this hypothesis. A minority of participants, however, do exhibit significant differences in their perception of the image based on its means of production. This article explores and illustrates these differences

Using Patient Information for the Prediction of Caregiver Burden in Amyotrophic Lateral Sclerosis

The aim of this study is to create a Clinical Decision Support System (CDSS) to assist in the early identification and support of caregivers at risk of experiencing burden while caring for a person with Amyotrophic Lateral Sclerosis. We work towards a system that uses a minimum amount of data that could be routinely collected. We investigated if the impairment of patients alone provides sufficient information for the prediction of caregiver burden. Results reveal a better performance of our system in identifying those at risk of high burden, but more information is needed for an accurate CDSS.European Commission - European Regional Development FundHealth Research BoardScience Foundation IrelandFutureNeuroAmerican ALS Associatio

Prediction of quality of life in people with ALS: on the road towards explainable clinical decision support

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).European Commission - European Regional Development FundHealth Research BoardScience Foundation IrelandFutureNeuro industry partner