BackgroundStillbirth has serious psycho-social consequences on the parents and on the family. The psychological impact of stillbirth is strongly influenced by the social and cultural context. There is very scarce information on this from the Indian context. This qualitative study was conducted to understand the psycho-social impact, aggravating factors, coping styles and health system response to stillbirths.MethodsA qualitative study was conducted using in-depth interviews with mothers who experienced stillbirth in the past 1 year and their families. A total of 8 women and two health care providers were interviewed by trained interviewers. The interviews were transcribed into the local language and thematic analysis was performed by the researchers retaining the transcripts in the local language. Themes were identified, and a conceptual framework was developed.ResultsWomen who experienced stillbirths suffered from serious forms of grief and guilt. These emotions were aggravated by the insensitive health system, health care providers, friends, and neighbours, as well as strained marital relationship and financial burdens. The women and their families were disturbed by the ‘suddenness’ of the stillbirth and frantically searched for the cause. They were frustrated when they couldn’t find the cause and blamed various people in their lives. The women and their families perceived poor quality of services provided in the health system and reported that the health care providers were inconsiderate and insensitive. On the other hand, the health care providers reported that they were over-worked, and the health facilities were under-staffed. The community health workers reported that they felt caught in the crossfire between the health facility staff and the family who suffered the stillbirth. The women reported several coping mechanisms including isolation, immersion in work, placing maternal love on other children, the anticipation of next pregnancy and religiosity.ConclusionStillbirth is a major cause of psycho-social morbidity. Health systems should be responsive to the psycho-social needs of women who suffer stillbirths and their families.Electronic supplementary materialThe online version of this article (10.1186/s12884-018-1742-0) contains supplementary material, which is available to authorized users.
Our smartphone-based fundus camera can help clinicians to monitor diseases affecting both central and peripheral retina. It can help patients understand their disease and clinicians convincing their patients regarding need of treatment especially in cases of peripheral lesions. Imaging peripheral retina has not been demonstrated in existing smartphone-based fundus imaging techniques. The device can also be an inexpensive tool for mass screening.
ImportanceThere is a lack of validated biomarkers for disability progression independent of relapse activity (PIRA) in multiple sclerosis (MS).ObjectiveTo determine how serum glial fibrillary acidic protein (sGFAP) and serum neurofilament light chain (sNfL) correlate with features of disease progression vs acute focal inflammation in MS and how they can prognosticate disease progression.Design, Setting, and ParticipantsData were acquired in the longitudinal Swiss MS cohort (SMSC; a consortium of tertiary referral hospitals) from January 1, 2012, to October 20, 2022. The SMSC is a prospective, multicenter study performed in 8 centers in Switzerland. For this nested study, participants had to meet the following inclusion criteria: cohort 1, patients with MS and either stable or worsening disability and similar baseline Expanded Disability Status Scale scores with no relapses during the entire follow-up; and cohort 2, all SMSC study patients who had initiated and continued B-cell–depleting treatment (ie, ocrelizumab or rituximab).ExposuresPatients received standard immunotherapies or were untreated.Main Outcomes and MeasuresIn cohort 1, sGFAP and sNfL levels were measured longitudinally using Simoa assays. Healthy control samples served as the reference. In cohort 2, sGFAP and sNfL levels were determined cross-sectionally.ResultsThis study included a total of 355 patients (103 [29.0%] in cohort 1: median [IQR] age, 42.1 [33.2-47.6] years; 73 female patients [70.9%]; and 252 [71.0%] in cohort 2: median [IQR] age, 44.3 [33.3-54.7] years; 156 female patients [61.9%]) and 259 healthy controls with a median [IQR] age of 44.3 [36.3-52.3] years and 177 female individuals (68.3%). sGFAP levels in controls increased as a function of age (1.5% per year; P < .001), were inversely correlated with BMI (−1.1% per BMI unit; P = .01), and were 14.9% higher in women than in men (P = .004). In cohort 1, patients with worsening progressive MS showed 50.9% higher sGFAP levels compared with those with stable MS after additional sNfL adjustment, whereas the 25% increase of sNfL disappeared after additional sGFAP adjustment. Higher sGFAP at baseline was associated with accelerated gray matter brain volume loss (per doubling: 0.24% per year; P < .001) but not white matter loss. sGFAP levels remained unchanged during disease exacerbations vs remission phases. In cohort 2, median (IQR) sGFAP z scores were higher in patients developing future confirmed disability worsening compared with those with stable disability (1.94 [0.36-2.23] vs 0.71 [−0.13 to 1.73]; P = .002); this was not significant for sNfL. However, the combined elevation of z scores of both biomarkers resulted in a 4- to 5-fold increased risk of confirmed disability worsening (hazard ratio [HR], 4.09; 95% CI, 2.04-8.18; P < .001) and PIRA (HR, 4.71; 95% CI, 2.05-9.77; P < .001).Conclusions and RelevanceResults of this cohort study suggest that sGFAP is a prognostic biomarker for future PIRA and revealed its complementary potential next to sNfL. sGFAP may serve as a useful biomarker for disease progression in MS in individual patient management and drug development.
ntroduction: The Covid-19 pandemic has left a serious impact on the lives of people globally. One key social consequence of the infection has been the stigma associated with it. Objectives: This study was conducted to explore the lived experiences of stigma among persons who have recovered from Covid-19 in Chennai, India. Methods: In depth telephonic interviews were conducted among 12 persons who had recovered from Covid-19 in Chennai. The participants were encouraged to narrate their experiences of stigma. The telephonic interviews were transcribed and coded by both the researchers. The codes were then grouped into meaningful themes and the lived experiences of stigma described with the help of rich narrative quotes. Results: The common manifestations of stigma were exclusion from public spaces and essential services, loss of livelihood, loss of social support and, in an extreme case, physical violence. The stigma was also manifested in health facilities in the form of neglect, and rude and insensitive treatment of patients. The factors that aggravated the stigma included fear of infection, lack of information, legitimisation of segregation by forced public health interventions, involvement of police in contact tracing, and isolation. Stigma was associated with psychosocial consequences such as loneliness, uncertainty, anxiety, anger, and humiliation. Demonstration of empathy, advances in communication technology, solidarity in communities and protecting confidentiality could potentially mitigate stigma. The intersectionality of age, gender, poverty, and disability worsened the experience of stigma. Conclusions: People who had recovered from Covid-19 experienced various degrees of social stigma. The future impact of the pandemic will depend strongly on the ability of health systems to address stigma.
The pandemic caused by the SARS-CoV2 novel coronavirus is creating a global crisis. There is a global ambience of uncertainty and anxiety. In addition, nations have imposed strict and restrictive public health measures including lockdowns. In this heightened time of vulnerability, public cooperation to preventive measures depends on trust and confidence in the health system. Trust is the optimistic acceptance of the vulnerability in the belief that the health system has best intentions. On the other hand, confidence is assessed based on previous experiences with the health system. Trust and confidence in the health system motivate people to accept the public health interventions and cooperate with them. Building trust and confidence therefore becomes an ethical imperative. This article analyses the COVID-19 pandemic in the south Indian state of Tamil Nadu and the state's response to this pandemic. Further, it applies the Trust-Confidence-Cooperation framework of risk management to analyse the influence of public trust and confidence on the Tamil Nadu health system in the context of the preventive strategies adopted by the state. Finally, the article proposes a six-pronged strategy to build trust and confidence in health system functions to improve cooperation to pandemic containment measures.
Objective We aimed to determine in relapsing multiple sclerosis (MS) whether intrathecal synthesis of immunoglobulin (Ig) M and IgG is associated with outcomes reflecting inflammatory activity and chronic worsening. Methods We compared cerebrospinal fluid analysis, clinical and magnetic resonance imaging data, and serum neurofilament light chain (sNfL) levels at baseline and follow‐up in 530 patients with relapsing MS. Patients were categorized by the presence of oligoclonal IgG bands (OCGB) and intrathecal synthesis of IgG and IgM (intrathecal fraction [IF]: IgGIF and IgMIF). Relationships with the time to first relapse, sNfL concentrations, T2‐weighted (T2w) lesions, MS Severity Score (MSSS), and time to initiation of high‐efficacy therapy were analyzed in covariate‐adjusted statistical models. Results By categorical analysis, in patients with IgMIF the median time to first relapse was 28 months shorter and MSSS on average higher by 1.11 steps compared with patients without intrathecal immunoglobulin synthesis. Moreover, patients with IgMIF had higher sNfL concentrations, more new/enlarging T2w lesions, and higher total T2w lesion counts (all p ≤ 0.01). These associations were absent or equally smaller in patients who were positive for only OCGB or OCGB/IgGIF. Furthermore, quantitative analyses revealed that in patients with IgMIF ≥ median, the time to first relapse and to initiation of high‐efficacy therapy was shorter by 32 and by 203 months, respectively (both p < 0.01), in comparison to patients with IgMIF < median. Dose‐dependent associations were also found for IgMIF but not for IgGIF with magnetic resonance imaging‐defined disease activity and sNfL. Interpretation This large study supports the value of intrathecal IgM synthesis as an independent biomarker of disease activity and severity in relapsing MS. ANN NEUROL 2021;90:477–489
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