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1.
Intern Med J ; 54(3): 455-460, 2024 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-37578398

RESUMEN

BACKGROUND: Kennedy disease (KD) is a slowly progressive lower motor neuron degenerative disease. The prevalence of KD is unknown in India. AIM: To describe the phenotypic and laboratory features of an Indian cohort of KD patients. METHODS: A retrospective study was done on seven genetically confirmed KD patients based on demographic, clinical and laboratory details. RESULTS: Mean age at onset and presentation was 37 ± 11.9 and 44.6 ± 13.5 years respectively. Progressive asymmetric proximal and distal limb weakness was the commonest symptom (57.1%). All patients had motor symptoms along with non-specific symptoms such as cramps from the onset. Easy fatigability, decremental response along with ptosis were noted in two patients, which was a novel finding. Gynaecomastia and tongue wasting with fasciculations were universal findings. All five patients with nerve conduction studies showed sensorimotor neuropathy. Magnetic resonance imaging muscle done in two patients showed a prominent moth-eaten appearance in the thigh and posterior leg compartment in one patient. The mean cytosine-adenine-guanine repeats were 44 ± 3.7, and there was no association between age of onset or severity with repeat length. Only one patient required an assistive device for ambulation after 15 years of symptom onset. CONCLUSIONS: This study showed phenotypic heterogeneity in the Indian cohort. The age of onset was earlier with a slowly progressive indolent course as compared with other ethnic cohorts. This highlights the importance of considering the KD diagnosis in patients with the indolent course and suspected ALS diagnosis even with ptosis and fatigability in an appropriate clinical context.


Asunto(s)
Atrofia Bulboespinal Ligada al X , Humanos , Estudios Retrospectivos , Progresión de la Enfermedad
2.
Indian J Palliat Care ; 30(3): 232-238, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-39371494

RESUMEN

Objectives: Neurodegenerative disorders necessitate comprehensive palliative care due to their progressive and irreversible nature. Limited studies have explored the comprehensive assessment needs of this population. This present study is designed to develop a checklist for evaluating the palliative care needs of individuals with motor neuron disease (MND) and Parkinson's disease (PD). Materials and Methods: The checklist was created through an extensive literature review and discussions with stakeholders in neuropalliative. Feedback from six field experts led to the finalisation of the checklist, which comprised 53 items addressing the unique biopsychosocial needs of MND and PD. Sixty patient-caregiver dyads receiving treatment in a tertiary referral care centre for neurology in south India completed the checklist. Results: People with MND had more identified needs with speech, swallowing, and communication, while people with PD reported needs in managing tremors, reduced movements, and subjective feelings of stiffness. People denying the severity of the illness was found to be a major psychosocial issue. The checklist addresses the dearth of specific tools for assessing palliative care needs in neurodegenerative disorders, particularly MND and PD. By incorporating disease-specific and generic items, the checklist offers a broad assessment of patients' multidimensional needs. Conclusion: This study contributes to the area of neuropalliative care by developing the neuropalliative care needs checklist (NPCNC) as a valuable tool for assessing the needs of individuals with neurodegenerative diseases. Future research should focus on refining and validating the NPCNC with larger and more diverse groups, applicability in different contexts, and investigating its sensitivity to changes over time.

3.
Neurogenetics ; 23(3): 187-202, 2022 07.
Artículo en Inglés | MEDLINE | ID: mdl-35416532

RESUMEN

The clinico-genetic architecture of sarcoglycanopathies in Indian patients is reported only as short series. In the present study, we aimed to investigate the clinical picture, genetic basis, and disease progression of patients genetically confirmed to have sarcoglycanopathy. Next-generation sequencing was performed in 68 probands with suspected sarcoglycanopathy. A total of 35 different variants were detected in the sarcoglycan genes in 68 probands (M = 37; age range, 5-50 years). Consanguinity was present in 44 families. Thirty-two variants are predicted to be pathogenic/likely pathogenic, among which 25 (78.13%) are reported, and 7 (21.87%) are novel. The clinical diagnosis was confirmed in a total of 64 (94.12%) probands with biallelic variations [SGCA(n=18); SGCB(n=34); SGCG(n=7); SGCD(n=5)]. The most common mutation was c.544A > C (p.Thr182Pro) in SGCB, and detected in 20 patients (29.42%). The majority of pathogenic mutations are homozygous (n = 30; 93.75%). Variants in 4 cases are of uncertain significance. Thirty-three patients lost ambulation at a mean age of 15.12 ± 9.47 years, after 7.76 ± 5.95 years into the illness. Only 2 patients had cardiac symptoms, and one had respiratory muscle involvement. The results from this study suggest that mutations in SGCB are most common, followed by SGCA, SGCG, and SGCD. The novel variations identified in this study expand the mutational spectrum of sarcoglycanopathies. To the best of our knowledge, this is the first study from India to describe a large cohort of genetically confirmed patients with sarcoglycanopathy and report its disease progression.


Asunto(s)
Sarcoglicanopatías , Sarcoglicanos , Adolescente , Adulto , Niño , Preescolar , Progresión de la Enfermedad , Perfil Genético , Humanos , Persona de Mediana Edad , Prevalencia , Sarcoglicanopatías/epidemiología , Sarcoglicanopatías/genética , Sarcoglicanopatías/patología , Sarcoglicanos/genética , Adulto Joven
4.
Dement Geriatr Cogn Disord ; 51(1): 90-100, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-35184061

RESUMEN

OBJECTIVES: Little is known regarding the cognitive and behavioral status of patients with dementia and their caregivers in lower middle-income countries during the COVID-19 pandemic. This study aimed to understand the impact of the pandemic on persons with dementia and their caregivers in India. METHODS: This was an observational study. A cohort of 66 persons with dementia and their caregivers were evaluated during the COVID-19 pandemic in 2 specialist hospitals in South India. Caregivers were interviewed at 2 distinct time points of the pandemic: during the national lockdown and 5 months after during later periods of the "cluster of cases" transmission phase. Participants were assessed via telephone utilizing validated instruments (Neuropsychiatric Inventory [NPI], Clinical Dementia Rating [CDR] Scale, and Depression, Anxiety and Stress Scale [DASS-21]) and a semi-structured questionnaire. The questionnaire documented sociodemographic information, clinical history, infection measures adopted, changes in caregiving routines, involvement in functional rehabilitation activities, and access to medical and long-term care support services. RESULTS: The 2-phase follow-up study found a significant worsening of behavior in dementia patients, demonstrated by a difference in the NPI sub-domain scores for anxiety (mean difference [standard deviation, SD] = -0.552 [1.993], t58 = -2.109, p = 0.039) and eating disturbances (mean difference [SD] = -1.121 [2.493], t59 = -3.424, p = 0.001). A relatively high proportion of patients developed anxiety (cumulative incidence = 24.53%) and eating disturbances (cumulative incidence = 26.92%), without having these symptoms at baseline. There was a trend toward an increase in proportion of persons with severe dementia (19.7% vs. 39.4%) on follow-up. Caregiver distress reported was significantly associated with neuropsychiatric symptoms (r = 0.712, p < 0.001) and dementia severity (ρ = 0.365, p = 0.004). In addition, difficulties in accessing medical care persisted between the 2 assessments, and there were statistically significant differences between functional rehabilitation activities such as indoor activities (p < 0.001), outdoor activities (p = 0.013), and physical exercises (p = 0.003) between baseline and follow-up. CONCLUSION: Findings suggest interruption of functional rehabilitation activities and disruption in medical care services are likely to have had an adverse impact on patients with dementia and contributed toward caregiver distress.


Asunto(s)
COVID-19 , Demencia , Cuidadores/psicología , Cognición , Control de Enfermedades Transmisibles , Demencia/psicología , Estudios de Seguimiento , Humanos , Pandemias
5.
Neurol Sci ; 42(11): 4683-4696, 2021 Nov.
Artículo en Inglés | MEDLINE | ID: mdl-33728548

RESUMEN

OBJECTIVES: We aimed to (i) analyse the clinical characteristics, treatment outcome and long-term prognosis of anti-NMDAR encephalitis and (ii) study the differences between paediatric and adult patients. METHODS: This was a chart review of all patients with anti-NMDAR encephalitis. RESULTS: There were 28 patients with 18 patients belonging to the paediatric (<18 years) age group. There was female (94%) preponderance in the paediatric age group, while in adult patients, there was no gender predilection (p=0.006). There was no significant difference in clinical feature, outcome or number of relapses between paediatric and adult population groups. MRI brain was abnormal in 53% of patients. Among the 15 patients with MRI abnormalities at the onset, 53% had poor functional outcome at 1 year, while in 12 patients with normal initial MRI brain, only 8% had poor functional outcome at 1 year (p =0.01). Nearly 53% of patients with abnormal MRI at presentation had at least one clinical relapse within 2 years while in patients with normal MRI at presentation, 15% had a clinical relapse (p=0.037). EEG abnormalities were noticed in 71% of patients; among them, 40 and 15% had poor functional outcome at 1 and 2 years respectively. In comparison, those with normal first EEG at onset, 12% had poor functional outcome at 2 years (p=0.57). CONCLUSIONS: Both paediatric and adult patients presented with similar clinical features but the paediatric population had female preponderance. The functional outcome and number of relapse were comparable in both the paediatric and adult groups. Patients with parenchymal changes on MRI and abnormal EEG showed poorer response compared to those with normal MRI and/or EEG at the onset. Patients have lesser severity of symptoms at relapse than in the first episode. An early diagnosis and treatment are essential for better long-term functional outcome.


Asunto(s)
Encefalitis Antirreceptor N-Metil-D-Aspartato , Adulto , Encefalitis Antirreceptor N-Metil-D-Aspartato/diagnóstico por imagen , Encefalitis Antirreceptor N-Metil-D-Aspartato/terapia , Niño , Femenino , Humanos , Imagen por Resonancia Magnética , Recurrencia Local de Neoplasia , Pronóstico , Resultado del Tratamiento
6.
J Soc Work End Life Palliat Care ; 17(4): 262-266, 2021.
Artículo en Inglés | MEDLINE | ID: mdl-34152942

RESUMEN

In many international care guidelines, multidisciplinary palliative care forms a key to optimum management in Motor Neuron Disease (MND). We describe the home-based palliative care interventions for a client with MND and his family from a Low and Middle-income country context. This report also discusses the advantages and challenges of the same with suggestions for sustaining the quality of care for neuro palliative conditions.


Asunto(s)
Enfermedad de la Neurona Motora , Cuidados Paliativos , Humanos , Enfermedad de la Neurona Motora/terapia
7.
Indian J Palliat Care ; 27(1): 146-151, 2021.
Artículo en Inglés | MEDLINE | ID: mdl-34035633

RESUMEN

INTRODUCTION: Duchene muscular dystrophy (DMD) is a neuromuscular disease of childhood, which has clear progression. The international standardized care guidelines for DMD suggest that palliative care is essential for the affected children. OBJECTIVE: To explore the parent's understanding of palliative care services available for children with DMD and the challenges faced by them in utilizing the same. METHODS: A cross-sectional qualitative exploratory study was conducted among six families of boys diagnosed with DMD. A semi-structured interview guide with prompts was used to conduct in-depth interviews which lasted for an average of 1 h. Thematic analysis was done to identify the pattern or themes. RESULTS: The major themes identified were "palliative care, living with DMD, Awareness about palliative care services and challenges." Awareness about palliative care services is the dominant theme identified as influencing rest of the experiences narrated by the parents of children with DMD. DISCUSSION: Integration of palliative care services from an early stage of the illness can help the child to make transition from one stage to another stage of the illness. To ensure the utilization of the available palliative care services, there is a need to create awareness about it among the general public. CONCLUSION: Introducing the concept of palliation of symptoms and ensuring quality of life of the child with DMD by accessing the available services can aid the parents to reach out for help for their child.

8.
Indian J Palliat Care ; 26(1): 60-65, 2020.
Artículo en Inglés | MEDLINE | ID: mdl-32132786

RESUMEN

INTRODUCTION: Motor neuron disease (MND) is a progressive neuromuscular disorder that can have significant and debilitating impact on the affected patient and families. Spouses are the primary carers for persons with MND in India, and the life of the person with MND and their spouse is never the same after the diagnosis. AIM: The objective was to explore the lived experience of spouses of persons diagnosed with MND. METHODS: A qualitative exploratory study with three-point interviews was conducted with spouse caregivers of two persons diagnosed with MND who were receiving treatment from a national tertiary referral care center for neurological disorders. All the patients were diagnosed as definite MND according to the modified El Escorial criteria. With the spouses, in-depth interviews were conducted at their home, lasting on an average of 1 hour using a semi-structured interview guide (prompts). Interpretative phenomenological analysis was used to derive themes from the interviews. RESULTS: The major themes emerged from the analysis were meaning of MND which contained the subthemes of delay in diagnosis and deterioration, psychological response across illness trajectory, relationship with the subthemes of changing roles in being acarer, marital relationship, to be seen as doing "right," and communication; adaptation with the subthemes of coping strategies and support system and life without the loved one. CONCLUSION: The changes in the lives of spouses and in strategies for caring the partner with deterioration of symptoms in the illness trajectory are explained in this study. The palliative approach in the management of MND has to take into account, the experiences and needs of carers since care happens at home.

9.
J Soc Work End Life Palliat Care ; 15(2-3): 111-125, 2019.
Artículo en Inglés | MEDLINE | ID: mdl-31373263

RESUMEN

Motor neuron disease (MND) is a progressive neurodegenerative disease. Ideal management plan in MND includes palliative care initiated from the time of diagnosis. At present, most of the neurodegenerative conditions are cared for at home. Neuropalliative care is an emerging concept in India and social workers are integral team members in this process. The primary aims of the study were to explore (a) the caregivers' experiences of the end-of-life stage, and (b) the sources of support for individuals and their caregivers with MND at the end-of-life stage. In-depth interviews were conducted with seven bereaved caregivers of individuals with MND from a national tertiary referral care center for neuropsychiatry in South India. Interviews were conducted either in person or by telephone. Thematic analysis was done using the constant comparative method. Major themes derived from the interviews were: (1) Transition from person to patient, (2) support, (3) death, and (4) impact on the caregivers. Mapping of themes identified "Support received during advanced stages" as the central theme influencing all other themes. The need for a care manager seems evident and is a role that can be effectively fulfilled by the care teams' social workers.


Asunto(s)
Aflicción , Cuidadores/psicología , Familia/psicología , Enfermedad de la Neurona Motora/epidemiología , Cuidado Terminal/psicología , Adulto , Femenino , Pesar , Humanos , India/epidemiología , Entrevistas como Asunto , Masculino , Persona de Mediana Edad , Investigación Cualitativa , Apoyo Social , Factores Socioeconómicos
10.
Indian J Palliat Care ; 23(1): 93-99, 2017.
Artículo en Inglés | MEDLINE | ID: mdl-28216870

RESUMEN

Palliative care (PC) involves total care for persons suffering from life-threatening illnesses and their families. Social work as a profession and an academic discipline is gaining momentum in India for the past few decades. A large number of professional social workers are working with individuals, families, and communities to provide PC in India. Authors have presented the current status of PC social work interventions and discussed the future directions in the practice, research, and training in PC and end-of-life care.

11.
Disabil Rehabil ; : 1-8, 2024 Aug 24.
Artículo en Inglés | MEDLINE | ID: mdl-39180333

RESUMEN

PURPOSE: Duchenne muscular dystrophy (DMD), a genetically linked muscle disease, is one of the most devastating diseases with currently no cure. Developing essential social skills as a child moves into adolescence is particularly problematic in DMD. The present study is an exploration of the social challenges faced by children with DMD. METHODS: A qualitative study was conducted among ten children diagnosed with DMD receiving treatment in a neuromuscular disorder clinic of a tertiary referral care center in Southern India. Participants were recruited purposively and were interviewed face-to-face and through telephone. The recorded interviews were transcribed and analyzed using reflexive thematic analysis. RESULTS: Mean age of the children was 13.9 (range: 13-15) at the time of the interviews, and six children had stopped schooling. The overarching theme generated from the interviews was struggle to belong, a yearning for normalcy in social spaces. Major identified themes were challenges with schooling, disabling society, feeling of being alone, and feeling of being a burden to the family. CONCLUSION: The study highlighted the struggles of children that become a complex social problem for them. Efforts need to be made to be child-centric and encourage inclusion by improving accessibility and social support through sensitization programs.


This is an addition to the existing body of literature from the Indian context and points toward the need for creating awareness about social inclusion in the healthcare professionals, general public and in schools.Strengthening the social support system with referrals to and liaising with other relevant internal and external services and resources, home support services is important.This can prepare the children with Duchenne muscular dystrophy with adequate information about social connections and prepare them emotionally.Mainstreaming of children with the necessary support of various stakeholders in the society will go a long way to ensure quality of life of the children.

12.
J Neurosci Nurs ; 2024 Sep 26.
Artículo en Inglés | MEDLINE | ID: mdl-39331627

RESUMEN

ABSTRACT: BACKGROUND: Wilson disease (WD) is a rare disease characterized by impaired copper metabolism. It is usually diagnosed in children and has several distinct attributes that can make the caregiving experience different. The advanced stage of the illness is quite challenging, and caregiver experiences during this phase of the disease are underexplored. METHODS: The present study is an exploratory qualitative investigation with in-depth interviews aiming to understand the experiences of family caregivers of children with advanced WD receiving neuropalliative care services at a tertiary care hospital. Interviews from 7 family caregivers were recorded, transcribed, and analyzed using an inductive and interpretive approach. RESULTS: Family caregivers in the study were predominantly mothers. The major themes that emerged are: being a parent and the caregiver, uncertainty related to illness, financial implications, understanding the disease dynamics, constructive coping strategies, and extended family networks and societal influences. CONCLUSION: The experiences and the encounters of family caregivers of children with advanced WD are multifaceted. Their challenging experiences underscore the need for extended supportive services and neuropalliative nursing care to assist the caregivers and families, and navigate the process of treatment and rehabilitation for the child.

13.
Artículo en Inglés | MEDLINE | ID: mdl-39344256

RESUMEN

BACKGROUND AND OBJECTIVES: Cardiovascular magnetic resonance imaging (CMRI) is the noninvasive technique of choice for early detection of cardiac involvement in Duchenne and Becker muscular dystrophy (DMD and BMD, respectively), but is seldom used in routine clinical practice in the Indian context. We sought to determine the prevalence of CMRI abnormalities in patients with DMD and BMD and to compare the CMRI parameters with the phenotypic and genotypic characteristics. METHODS: A prospective, observational study was conducted on patients genetically diagnosed with DMD and BMD who could complete CMRI between March 2020 and March 2022. Abnormal CMRI was the presence of any late gadolinium enhancement (LGE) that signifies myocardial fibrosis (LGE positivity), regional wall motion abnormality, or reduced left ventricular ejection fraction (LVEF <55%). RESULTS: A total of 46 patients were included: 38 patients with DMD and eight with BMD. Cardiac abnormality was seen in 23 (50%) patients. LGE was more common than impaired LVEF in DMD (16, 42.1%), while impaired LVEF was more common in BMD (5, 62.5%). LGE was most frequently found in lateral wall (18/19) followed by inferior (6/19), septal (5/19), anterior (2/19), and apex (1/19). Among the various clinicodemographic parameters, only age (r = 0.495, P = 0.002) and disease duration (r = 0.407, P = 0.011) were found to significantly correlate with LGE in patients with DMD. No association was found between the various CMRI parameters and the genotype. CONCLUSIONS: The current study highlights the differences in myocardial fibrosis and LV dysfunction between DMD and BMD, along with other CMRI parameters. Notably, a genotype-CMRI correlation was not found in the current cohort, which needs to be further explored.

14.
J Neuromuscul Dis ; 11(5): 959-968, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-39213088

RESUMEN

Introduction: GNE myopathy is a rare slowly progressive adult-onset distal myopathy with autosomal recessive inheritance. It has distinctive features of quadriceps sparing with preferential anterior tibial involvement. Most patients eventually become wheelchair bound by 10-20 years after onset. This study analyzes the phenotype-genotype characteristics and disease progression in a large cohort of GNEM patients from India. Materials and methods: Retrospective observational study on GNEM from a quaternary neurology referral hospital in southern India. Data was collected from clinical phenotyping, serum creatine kinase levels, muscle biopsy histopathology, genetic analysis and functional assessment scales - IBMFRS and MDFRS. Results: 157 patients were included with mean age at onset and diagnosis: 26.5±6.2 years and 32.8±7.8 years, respectively. M:F ratio was 25 : 13. Most common presenting symptom: foot drop (46.5%) and limb girdle weakness (19.1%). Wasting and weakness of small muscles of hand and finger flexors seen in 66.2% and as an initial symptoms in 5.2%. Though tibialis anterior involvement was most common (89.2%), early quadriceps weakness was noted in 3.2% and Beevor's sign in 59.2%. Rimmed vacuoles were present in 75% of patients with muscle biopsy. Most common variant was the Indian Founder variant identified in 129 patients (c.2179 G>A, p.Val727Met - 82.2%) and most common zygosity being compound heterozygous state (n = 115, 87.5%). Biallelic kinase domain variations predisposed to a more severe phenotype. Wheelchair bound state noted in 8.9% with a mean age and duration of 32.0±7.1 and 6.3±4.9 years respectively, earlier than previous studies on other ethnic groups. Conclusion: This is the largest GNEM cohort reported from South Asia. The p.Val727Met variant in compound heterozygous state is noted in majority (82.2%) of the cases. Observed relationships between genotype and clinical parameters shows that severity of the disease might be attributable to specific GNE genotype and thus could aid in predicting the disease progression.


Asunto(s)
Progresión de la Enfermedad , Miopatías Distales , Estudios de Asociación Genética , Humanos , Masculino , Adulto , Femenino , India , Miopatías Distales/genética , Miopatías Distales/fisiopatología , Miopatías Distales/patología , Estudios Retrospectivos , Adulto Joven , Complejos Multienzimáticos/genética , Fenotipo , Músculo Esquelético/patología , Mutación , Estudios de Cohortes , Genotipo
15.
Ann Indian Acad Neurol ; 26(2): 107-111, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-37179665

RESUMEN

Neuropalliative care is an emerging sub-specialty of neurology and palliative care that aims to relieve suffering from symptoms, reduce distress and improve the quality of life of people with life-limiting neurological conditions and their family caregivers. As advances are being made in the prevention, diagnosis, and treatment of neurological illnesses, there is an increasing need to guide and support patients and their families through complex choices involving immense uncertainty and important life-changing outcomes. The unmet need for palliative care in neurological illnesses is high, especially in a low-resource setting like India. This article discusses the scope of neuropalliative care in India, the barriers and challenges that impede the specialty's development, and the factors that could facilitate the development and scale-up delivery of neuropalliative services. The article also attempts to highlight priority areas for advancing neuropalliative care in India which include context-specific assessment tools, sensitization of the healthcare system, identification of intervention outcomes, the need for developing culturally sensitive models based on home-based or community-based care, evidence-based practices, and development of manpower and training resources.

16.
Indian J Community Med ; 48(5): 639-640, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-37970164

RESUMEN

Disability certification is mandatory for people with Parkinson's disease to avail any schemes and benefits in India. The process of certification of the extent of disability in a complex disorder like Parkinson's needs to be made less cumbersome and streamlined to ensure that people for whom the benefits are meant are able to avail them.

17.
Dementia (London) ; : 14713012231193081, 2023 Aug 07.
Artículo en Inglés | MEDLINE | ID: mdl-37548512

RESUMEN

BACKGROUND: Limited evidence exists on how people living with dementia and their family/unpaid carers navigate care and support in India. AIM: This study used case vignettes to illustrate likely pathways to care for dementia, from receiving a diagnosis to long-term support, in India and to highlight gaps and challenges associated with current care provision for persons living with dementia. METHODS: As part of the Strengthening Responses to Dementia in Developing Countries (STRiDE) project, and to contribute to an analysis of dementia care policies and systems in India, case vignettes were used to illustrate the diverse situations that people with dementia and their families may experience when seeking care in the Indian context. Eight hypothetical, but realistic cases of people with dementia were created by a multi-disciplinary team with experience in dementia care in India, to map out the likely care journeys of each case. RESULTS: Investigating eight diverse care trajectories of people living with dementia highlighted important patterns relevant to the Indian context. We identified delays in dementia diagnosis to be attributed to low awareness of dementia among the general public and medical professionals in addition to a critical shortage of specialist services involved in facilitating dementia diagnosis. Post-diagnosis, support was recognized as limited and associated with considerable out-of-pocket (OOP) costs. Families primarily provide long-term care for people with dementia till end of life. CONCLUSIONS AND RECOMMENDATIONS: Several steps need to be taken in order to improve dementia care in India. Increasing dementia awareness among both medical professionals and general public is essential. Shortages in dementia specialists can be addressed in part through appropriate task shifting. Lastly, more research is needed to develop evidence-based community interventions to support informal care provision for persons with dementia in India.

18.
Chronic Illn ; 19(2): 458-471, 2023 06.
Artículo en Inglés | MEDLINE | ID: mdl-35469482

RESUMEN

OBJECTIVE: To develop individualised psychosocial intervention program for people with MND and their families in India. METHODS: People with MND and healthcare staff were constructively involved in co-designing the intervention program in four phases adapted from the MRC framework: 1. A detailed need assessment phase where 30 participants shared their perceptions of psychosocial needs 2. Developing the intervention module (synthesis of narrative review, identified needs); 3. Feasibility testing of the intervention program among seven participants; 4. Feedback from participants on the feasibility (acceptance, practicality adaptation). The study adopted an exploratory research design. RESULTS: Intervention program of nine sessions, addressing psychosocial challenges through the different stages of progression of the illness and ways to handle the challenges, specific to the low resource settings, was developed and was found to be feasible. People with MND and families who participated in the feasibility study shared the perceived benefit through feedback interviews. CONCLUSION: MND has changing needs and challenges. Intervention programme was found to be feasible to be implemented among larger group to establish efficacy.


Asunto(s)
Esclerosis Amiotrófica Lateral , Intervención Psicosocial , Humanos , Esclerosis Amiotrófica Lateral/psicología , Esclerosis Amiotrófica Lateral/terapia , Estudios de Factibilidad
19.
J Glob Infect Dis ; 15(4): 156-165, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-38292694

RESUMEN

Introduction: Encephalitis is a major public health problem worldwide that causes huge emotional and economic loss to humanity. Encephalitis, being a serious illness, affects people of all ages. The aim is to describe the sociodemographic, clinical, etiological, and neuroimaging profile among 101 acute encephalitis syndrome (AES) patients visiting a tertiary neuro-specialty care hospital in India. Methods: Record review of medical records of all patients attending neurology emergency and outpatient services at NIMHANS Hospital, diagnosed with AES in 2019, was conducted. Data were collected using standardized data collection forms for all cases in the study. Descriptive analyses (mean and standard deviation for continuous variables and proportions for categorical variables) were conducted. The Chi-square test/Fisher's exact test was used for the comparison of independent groups for categorical variables, and t-test for comparing means for continuous variables. Results: About 42.6% of AES patients had viral etiology, while in 57.4%, etiology was not ascertained. Common presenting symptoms were fever (96%), altered sensorium (64.4%), seizures (70.3%), headache (42.6%), and vomiting (27.7%). Herpes simplex was the most common (21.8%) identified viral encephalitis, followed by chikungunya (5%), arboviruses (chikungunya and dengue) (4%), Japanese encephalitis (4%), rabies (3%), dengue (1%), and varicella virus (1%). About 40% of AES patients showed cerebrospinal fluid pleocytosis (44%), increased protein (39.6%), abnormal computed tomography brain (44.6%), and magnetic resonance imaging abnormalities (41.6%). Conclusion: The study highlights the need to ascertain etiology and importance of evidence-based management of AES patients. A better understanding of opportunities and limitations in the management and implementation of standard laboratory and diagnostic algorithms can favor better diagnosis and management of AES.

20.
Ind Psychiatry J ; 32(2): 390-396, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-38161470

RESUMEN

Background: The military environment is characterized by unpredictable situations, intensive training, demanding workload, and job-associated stressors, which make it highly stressful. Mentorship and mental well-being training could be beneficial to both officers and the new adolescent recruits of the Indian Air Force (IAF). Aim: This study aimed at evaluating the effect of a multi-disciplinary structured training on mentoring and mental well-being among officers and instructors in the IAF. Methods: Seventy IAF officers/instructors underwent a week-long multi-disciplinary structured training program, which was conducted at a tertiary care neuro-psychiatric hospital in South India. A quasi-experimental design with a single-group pre- and post-test was adopted. Outcome measures included a) knowledge on mentorship and mental health and b) self-perceived competence in addressing mental health distress. Results: Post training, there was a statistically significant improvement in scores on mentorship/mental health knowledge and a significant increase in self-perceived competence in addressing mental distress. Conclusion: Mentorship and mental well-being training for officers and instructors in the IAF improved mental health knowledge and self-perceived competence. Therefore, administration of regular and in-depth structured mental health-related training interventions could be beneficial not only to the officers but also to the new recruits/mentees in the IAF.

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