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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 'system' 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. [ABSTRACT FROM AUTHOR]

Background: Adverse childhood experiences and adult trauma, including sexual abuse, physical abuse, neglect, and interpersonal violence, are highly prevalent in low-resource settings and associated with adverse psychological outcomes. However, there is limited focus on the impact of ACEs and trauma on mental health in sub-Saharan Africa. Therefore, this study examines the impact of traumatic events and ACEs on depression, anxiety, and stress scores among outpatients receiving psychiatric care at two public mental health treatment facilities in Johannesburg, South Africa., Methods: A sample of 309 participants were recruited between January and June 2022 at Helen Joseph Hospital and Alexandra 18th Avenue Clinic. Participants completed screening measures for mental health outcomes, including the 9-item Patient Health Questionnaire (PHQ-9), the 7-item General Anxiety Disorder scale (GAD-7) and the 10-item Perceived Stress Scale. We fitted modified Poisson and linear regression models to estimate the impact of ACEs and adult experiences of trauma on depression, anxiety, and stress scale scores., Results: 47.57% (n = 147) of participants screened positive for anxiety, 44.66% (n = 138) for depression, and 17% (n = 54) for severe stress. More females screened positive for anxiety (65.31%), depression (65.94%), and stress (77.78%). Each ACE was associated with a 12% increased risk of depression, a 10% increased risk of anxiety, and a 17% increased risk of stress. In separately estimated models, each additional traumatic event during adulthood was associated with a 16% increased risk for depression, an 8% increased risk of anxiety, and a 26% increased risk of stress. Across all models, being male and self-reported physical health were consistently associated with a reduced risk for depression, anxiety, and stress., Conclusions: ACEs and experiences of traumatic events as adults were associated with significantly increased risks of anxiety, depression, and severe stress. Given high exposure to ACEs and trauma and the associated impact on the mental health of individuals, families, and communities, there is a need to strengthen and scale innovative combination interventions that address multiple stressors impacting people in low-resource settings., (© 2023. BioMed Central Ltd., part of Springer Nature.)

Background: Stunting and wasting in children less than 5 years of age are two key indicators of child malnutrition. Reducing their prevalence is a priority of the global public health community and for Somalia, a country suffering complex humanitarian emergencies such as drought, flooding, conflict and large-scale displacements., Methods: Data from the nationally representative cross-sectional Somalia Micronutrient Survey (SMS 2019) on 1947 children were analyzed to assess the prevalence and potential risk factors of stunting and wasting. Bivariate and multivariable analyses were conducted separately for children 0-5 months and 6-59 months, and population attributable fractions were calculated using adjusted risk ratios produced by Poisson regression models., Results: Among the 1947 children, the prevalence of stunting and wasting were 17.2% (95% CI: 15.0, 19.6) and 11.0% (95% CI: 9.3, 12.9), respectively. Among children 6-59 months of age, those residing in severely food insecure households had a higher risk of stunting (adjusted risk ratio [aRR] 1.47; CI: 1.12, 1.93) compared to those in food secure households. This risk of stunting was also higher in children with inflammation (aRR 1.75; CI: 1.35, 2.25) and iron deficiency (ID) (aRR 2.09; CI: 1.58, 2.80). For wasting, a dose-response relationship was found with household wealth, with the risk of wasting increasing significantly as the household wealth quintile decreased. On the other hand, the risk of wasting was lower in iron-deficient children (aRR 0.69; CI: 0.49, 0.98) than in iron-replete children. Among children 0-5 months of age no variables remained statistically significantly associated with stunting in the multivariable analysis. Wasting, however, was more common in children with recent diarrhea (aRR 3.51; CI: 1.68, 7.36)., Conclusions: Nutritional status of children in Somalia may be improved by prevention of diarrhea and other infections and improvements in household food security., (© 2022. The Author(s).)

Background: Amyotrophic Lateral Sclerosis (ALS) is a progressive neurodegenerative condition with a mean life expectancy of 3 years from first symptom. Understanding the factors that are important to both patients and their caregivers has the potential to enhance service delivery and engagement, and improve efficiency. The Discrete Choice Experiment (DCE) is a stated preferences method which asks service users to make trade-offs for various attributes of health services. This method is used to quantify preferences and shows the relative importance of the attributes in the experiment, to the service user., Methods: A DCE with nine choice sets was developed to measure the preferences for health services of ALS patients and their caregivers and the relative importance of various aspects of care, such as timing of care, availability of services, and decision making. The DCE was presented to patients with ALS, and their caregivers, recruited from a national multidisciplinary clinic. A random effects probit model was applied to estimate the impact of each attribute on a participant's choice., Results: Patients demonstrated the strongest preferences about timing of receiving information about ALS. A strong preference was also placed on seeing the hospice care team later rather than early on in the illness. Patients also indicated their willingness to consider the use of communication devices. Grouping by stage of disease, patients who were in earlier stages of disease showed a strong preference for receipt of extensive information about ALS at the time of diagnosis. Caregivers showed a strong preference for engagement with healthcare professionals, an attribute that was not prioritised by patients., Conclusions: The DCE method can be useful in uncovering priorities of patients and caregivers with ALS. Patients and caregivers have different priorities relating to health services and the provision of care in ALS, and patient preferences differ based on the stage and duration of their illness. Multidisciplinary teams must calibrate the delivery of care in the context of the differing expectations, needs and priorities of the patient/caregiver dyad.

Background: Quality of life is a basic goal of health and social care. The majority of people with Amyotrophic Lateral Sclerosis (ALS) are cared for at home by family caregivers. It is important to recognize the factors that contribute to quality of life for individuals to better understand the lived experiences in a condition for which there is currently no curative treatment., Aim: To explore individual quality of life of people with ALS and their informal caregivers over time., Methods: Over three semi-structured home interviews, 28 patient-caregiver dyads provided information on a range of demographic and clinical features, psychological distress, caregiver burden, and individual quality of life. Quality of life data were analysed using quantitative and qualitative methods with integration at the analysis and interpretation phases., Results: Individual Quality of Life was high for patients and caregivers across the interviews series, and higher among patients than their care partners at each time point. Family, hobbies and social activities were the main self-defined contributors to quality of life. The importance of health declined relative to other areas over time. Friends and finances became less important for patients, but were assigned greater importance by caregivers across the illness trajectory. Psychological distress was higher among caregivers. Caregiver burden consistently increased., Conclusion: The findings from this study point to the importance of exploring and monitoring quality of life at an individual level. Self-defined contributory factors are relevant to the individual within his/her context. As an integrated outcome measure individual quality of life should be assessed and monitored as part of routine clinical care during the clinical encounter. This can facilitate conversations between health care providers, patients and families, and inform interventions and contribute to decision support mechanisms. The ascertainment of self-defined life quality, especially in progressive neurodegenerative conditions, mean health care professionals are in a better position to provide person-centred care.

Background: The University College Dublin (UCD) Public and Patient Invovlement (PPI) ignite program is focused on embedding PPI in health and social care related research, education and training, professional practice and administration. During a PPI knowledge sharing event challenges were noted during the pre-commencement stage of research projects. This stage includes the time before a research projects/partnership starts or when funding is being applied for. As a response, we agreed there was a need to spend time developing a values-based approach to be used from the pre-commencement of PPI projects and partnerships. Values are deeply held ideals that people consider to be important. They are vital in shaping our attitudes and motivating our choices and behaviours., Methods: Using independent facilitators, we invited a diverse group of participants to a full-day workshop in February. During the workshop, the concept of a values statement and values-based approaches was introduced. The group via a majority consensus, agreed on a core set of values and a shared understanding of them. After the workshop, a draft was shared with participants for further comment and final agreement., Results: The workshop had 22 people representing experts by experience, PPI charity partners, funders, academics and national PPI Ignite partners. The group via consensus identified four values of respect, openness, reciprocity and flexibility for the pre-commencement stage. A frequently reported experience of PPI partners was that some felt that the pre-commencement activities appeared at times like a performance; an act that had to be completed in order to move to the next stage rather than a genuine interest in a mutually beneficial partnership. Being open and transparent with all invovled that the funding application may not be successful was stressed. Another important feature related to 'openness' was the 'spaces' and 'places' in which meetings between partners could occur in an accessible and equitable way. The issue of 'space' is particularly critical for the involvement of seldom heard groups. The benefits of the research are often clear for academics, but for PPI partners, these are often less certain. To achieve reciprocity, academic and PPI partners need to engage in a timely, repeated and transparent dialogue to achieve beneficial outcomes for all stakeholders. Being open to new inputs and differing modes of knowledge and ideas was also stressed. For some, this will require a change in attitudes and behaviours and should result in more collective decision making. Several areas were identified using the four values., Conclusions: This work via majority consensus identified four values of respect, openness, reciprocity, and flexibility for the pre-commencement stage. These values should be used to support inclusive, effective and collective PPI across all stages of involvement. We hope this work will stimulate further action in this area. In particular, we would welcome the evaluation of these values involving diverse PPI groups., Competing Interests: Competing interestsNone declared., (© The Author(s) 2020.)

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.

Background: Between 7% and 15% of patients are dissatisfied after total hip arthroplasty (THA). To assess predictors and postoperative determinants of satisfaction and expectation fulfilment one year after (THA)., Methods: Before THA surgery, 132 patients from three tertiary care centres and their surgeons were interviewed to assess their expectations using the Hospital for Special Surgery Total Hip Replacement Expectations Survey (THR survey). One year after surgery, patients (n = 123) were contacted by phone to complete a questionnaire on expectation fulfilment (THR survey), satisfaction, functional outcome (Womac), and health-related quality of life (SF 12). Univariate and multivariate analyses were performed., Results: Preoperative predictors of satisfaction were a good mental wellbeing (adjusted OR 1.09 [1.02; 1.16], p = 0.01) and optimistic surgeons expectations (1.07 [1.01; 1.14], p = 0.02). The main postoperative determinant of satisfaction was the fulfilment of patient's expectations (1.08 [1.04; 1.12], p < 0.001). Expectation fulfilment could be predicted before surgery by young age (regression coefficient -0.55 [-0.88; -0.21], p = 0.002), good physical function (-0.96 [-1.82; -0.10], p = 0.03) and good mental wellbeing (0.56 [0.14; 0.99], p = 0.01). Postoperative determinants of expectation fulfilment were functional outcome (-2.10 [-2.79; -1.42], p <0.001) and pain relief (-14.83 [-22.38; -7.29], p < 0.001)., Conclusion: To improve patient satisfaction after THA, patients' expectations and their fulfilment need to be carefully addressed. Patients with low mental wellbeing or physical function should be identified and specifically informed on expected surgical outcome. Surgeons' expectations are predictive of satisfaction and information should aim to lower discrepancy between surgeons' and patients' expectations.