Indian Journal of Palliative Care最新文献

{"title":"Spiritual Intelligence and Spiritual Care in Nursing Practice: A Bibliometric Review.","authors":"Jos K Stiliya, Janis Maria Antony, Jasmine Joseph","doi":"10.25259/IJPC_155_2024","DOIUrl":"10.25259/IJPC_155_2024","url":null,"abstract":"<p><p>Spiritual intelligence (SI) has recently gained traction in various fields, including nursing. Given the increasing emphasis on patient-centred care and the holistic well-being of patients and nurses, SI is particularly relevant in nursing practice. A bibliometric analysis of recent publications (2014-2024) in the field helps synthesise and evaluate the existing research on SI in the general field of nursing, identify literature gaps, suggest future research directions and raise awareness of the importance of SI in nursing practice. The present study reports bibliometric data (n = 461) from the Scopus database on SI, spiritual quotient and spiritual care in nursing and health care. The data are analysed using MS Excel and VOSviewer software. The publications' trend analysis revealed a significant increase in SI-related publications since 2015. The study presents top-cited articles. Journal of Religion and Health was found to be a prominent journal with the maximum number of publications, and Sage was found to be the top publisher of journals with articles on SI. Network visualisation reveals central figures such as Wilfred McSherry, Trove Giske, Elizabeth Johnston Taylor, Fiona Timmins, Silvia Caldeira and Linda Ross as key researchers in the field. The United States and Iran have the most substantial connections of authors publishing on SI. This study reveals an increasing interest in SI and care within nursing research, confirming its growing significance in the field. By reporting areas where research on SI in nursing remains underdeveloped, the study paves the way for the development of new or updated curricula in nursing programs. The study can guide faculty development initiatives by highlighting the importance of SI and providing resources for educators to incorporate these concepts into their teaching. This study presents specific research questions to address these knowledge gaps. Future studies which can address these questions will enrich nursing education and practice, leading to improved patient outcomes and enhanced nurse well-being using the full potential of SI in nursing practice.</p>","PeriodicalId":13319,"journal":{"name":"Indian Journal of Palliative Care","volume":"30 4","pages":"304-314"},"PeriodicalIF":1.1,"publicationDate":"2024-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11618709/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142800593","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Effect of Music Therapy on Quality of Life in Geriatric Population: A Systematic Review and Meta-Analysis.","authors":"M Sukumar, Suresh Kumar Thanneeru, Roshan Fakirchand Sutar, Anjan Sahu, Amit Agrawal","doi":"10.25259/IJPC_23_2024","DOIUrl":"10.25259/IJPC_23_2024","url":null,"abstract":"<p><p>The older population is susceptible to dementia, Alzheimer's and depression. A growing elderly population poses a burden on caregivers and society. If their cognitive and psychological health is maintained, they may not need to depend on others for their needs, thereby reducing the burden on caregivers. This, in turn, may lead to a decrease in the necessity for consulting healthcare providers for psychological health, subsequently reducing the overall cost of healthcare. There are numerous options for improving cognitive and mental health in the elderly, one of which is music therapy (MT). In this systematic review, we aim to demonstrate the efficacy of MT in enhancing psychological health among the geriatric population afflicted with dementia and depression. A systematic search was conducted following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines across PubMed, Scopus, ScienceDirect, and Cochrane databases. The inclusion criteria were randomized controlled trials (RCTs) that explored the use of MT in elderly patients with or without depression, dementia, or Alzheimer's. Non-RCTs, retrospective and prospective observational studies, case reports, and case series were excluded. Out of 76 records identified, eight articles were selected for qualitative synthesis and three for meta-analysis. These studies, conducted between 2010 and 2020, involved a total of 605 subjects, with 330 receiving MT and the remainder serving as controls. The interventions varied in terms of music type, duration, and setting, with outcome measures including depression scales, quality of life assessments, and cognitive examinations. The meta-analysis of depression scores indicated a positive effect of MT, though a wide confidence interval warrants caution. The quality assessment revealed varying risks of bias, highlighting the need for further research to confirm the positive role of MT. In conclusion, MT emerges as a promising intervention, but it is accompanied by considerable limitations and heterogeneity among studies. This emphasizes the need for further RCTs that specifically address the identified limitations, including issues related to sample size, control group selection, and potential confounding factors. Conducting more robust research in these areas is crucial to establishing a clearer understanding of the therapeutic benefits of music in the elderly population.</p>","PeriodicalId":13319,"journal":{"name":"Indian Journal of Palliative Care","volume":"30 4","pages":"296-303"},"PeriodicalIF":1.1,"publicationDate":"2024-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11618675/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142800556","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Impact of an Early Goals of Care Discussion on Patient Satisfaction and Quality of Life among Seriously Ill Patients Admitted to the Medical Wards - A Quality Improvement Project.","authors":"M V Ashwini, Archith Boloor, Sheetal Raj Moolambally, Gauri Thukral","doi":"10.25259/IJPC_166_2024","DOIUrl":"10.25259/IJPC_166_2024","url":null,"abstract":"<p><strong>Objectives: </strong>The objective of this study was to achieve integration of goals of care discussion (GOCD) as a routine part of assessment among seriously ill patients admitted to medical wards and assess its impact on patient satisfaction, caregiver satisfaction and quality of life (QOL).</p><p><strong>Materials and methods: </strong>This was non-randomised before and after study - A quality improvement project involving three plan-do-study-act (PDSA) cycles each of 6 weeks duration. The study included a total of 60 patients and their caregivers admitted to the Internal Medicine Unit in a tertiary care hospital in South India. Junior residents from Internal Medicine were trained in conducting a GOCD through a face to face training session and through an online training program using capc.org modules. Through a process of three PDSA cycles, we introduced the documentation of GOCD as a routine part of the assessment of seriously ill patients and assessed its impact on QOL and patient satisfaction.</p><p><strong>Results: </strong>Following the introduction of GOCD, patient and caregiver satisfaction had a statistically significant improvement across the majority of the assessed domains, and there was an overall improvement in the mean World Health Organization QOL Brief Version QOL scores by 4.8.</p><p><strong>Conclusion: </strong>Among patients with serious illness, GOCD improved patient and caregiver satisfaction and QOL. Such conversations are essential to align the care delivery with patient preferences and help in providing patient-centred care.</p>","PeriodicalId":13319,"journal":{"name":"Indian Journal of Palliative Care","volume":"30 4","pages":"330-335"},"PeriodicalIF":1.1,"publicationDate":"2024-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11618671/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142800558","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Perception of Social Support and Prevalence of Self-Reported Depressive Symptoms among Patients with Head-and-Neck Squamous Cell Carcinoma Treated at a Tertiary Cancer Centre in North India.","authors":"Bhavna Rani, Aditi Prashant Sinha, Kamlesh Kumari Sharma, Barre Vijay Prasad, Muthuvenkatachalam Srinivasan, Ahitagni Biswas","doi":"10.25259/IJPC_56_2023","DOIUrl":"10.25259/IJPC_56_2023","url":null,"abstract":"<p><strong>Objectives: </strong>This study was conducted to determine and correlate the perception of social support and the prevalence of self-reported depressive symptoms among patients with head-and-neck squamous cell carcinoma (HNSCC).</p><p><strong>Materials and methods: </strong>This cross-sectional study included 100 patients with HNSCC receiving treatment at a tertiary cancer centre in north India. They were enrolled by a convenient sampling technique. Subsequently, data regarding sociodemographic profile, clinical profile, perception of social support and prevalence of self-reported depressive symptoms were collected through face-to-face interviews using a subject datasheet, Multidimensional Scale of Perceived Social Support (MSPSS) and Patient Health Questionnaire-9.</p><p><strong>Results: </strong>Most of the HNSCC patients, 37%, were in the 42-54 years age category. A male gender predilection (85%) was noted. The two most common subsites involved were the oral cavity (61%) followed by the oropharynx (26%). A majority, 60% of the patients had high social support. Among the subscales of the MSPSS, high social support was obtained majorly from the family (98%), followed by significant others (66%) and friends (52%). The prevalence of self-reported moderate-to-severe depressive symptoms was noted in 36% of patients. The perception of social support and the prevalence of self-reported depressive symptoms showed a weak negative correlation (r = -0.262, <i>P</i> = 0.008).</p><p><strong>Conclusion: </strong>Despite receiving high social support, there was a high prevalence of self-reported moderate-to-severe depressive symptoms in patients with HNSCC. Therefore, it is pertinent to monitor the mental health of patients afflicted with HNSCC and provide mental health rehabilitation as per their needs.</p>","PeriodicalId":13319,"journal":{"name":"Indian Journal of Palliative Care","volume":"30 4","pages":"336-341"},"PeriodicalIF":1.1,"publicationDate":"2024-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11618644/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142800574","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Quality of Life as a Non-mortality Patient-centred Outcome in the Critically Ill: A Retrospective Analysis.","authors":"Sonali Vadi, Shreya Gudka, Priyadarshini Deo","doi":"10.25259/IJPC_48_2024","DOIUrl":"10.25259/IJPC_48_2024","url":null,"abstract":"<p><strong>Objectives: </strong>Mortality is a common gauged endpoint in critically ill patients. Reduced quality of life is an aligned repercussion of protracted critical illness. Baseline status, severity of illness and its trajectory influence the outcomes. Patient-oriented outcomes are those that matter the most to a patient. However, quite often, family approves of trade-offs with survivorship in the Indian context. We looked at non-mortality outcomes in patients on high-intensity life-sustaining interventions admitted to the intensive care unit (ICU) despite poor prognosis and died on full support or survived to be completely dependent.</p><p><strong>Materials and methods: </strong>In this retrospective chart review study, we studied patients (1) who spent more than 1 month in the hospital enduring a myriad of distressing physical and psychological vicissitudes, (2) whose primary illness was fairly advanced (3) and either succumbed or survived to be impeded in their response to cognitive assessment and with severe functional impairment. Patient demographics, comorbidities, pre-morbid functional status, burden of critical illness, use of life-sustaining therapies, functional dependence in the last week of ICU stay, best neurological status in the last week pre-death or discharge, dying trajectories and economic analysis were noted.</p><p><strong>Results: </strong>Trends of clinical progress of 23 patients were deliberated. The mean age of males was 65 years and 61 years for females. Five patients had a Barthel index score of 10-20, indicating total dependency and two patients had a score of 21-60, indicating severe dependency. Two patients were cognitively impaired at baseline. The worst neurological status in the week before death or discharge was eye1, motor1, and verbaltracheostomised. Thirteen patients succumbed during ongoing treatment.</p><p><strong>Conclusion: </strong>Daily discussions on the dynamics of illness progression need to take place with family on a regular basis for patients managed in ICU. Realistic perceptions and grounded expectations from the families and caregivers are necessary for patient-centred outcomes.</p>","PeriodicalId":13319,"journal":{"name":"Indian Journal of Palliative Care","volume":"30 4","pages":"366-374"},"PeriodicalIF":1.1,"publicationDate":"2024-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11618669/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142800579","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"A Prospective Longitudinal Study to Demonstrate the Utility of the Palliative Prognostic Index in Forecasting the Short-term Survival of Patients with Advanced Cancer in India.","authors":"Avinash Tiwari, Arun Ghoshal, Jayita K Deodhar, Mary Ann Muckaden","doi":"10.25259/IJPC_104_2024","DOIUrl":"10.25259/IJPC_104_2024","url":null,"abstract":"<p><strong>Objectives: </strong>In this study, our primary objectives were to validate the palliative prognostic index (PPI) tool in the context of palliative care for patients with advanced cancer. Specifically, we aimed to assess the accuracy of the PPI in predicting actual survival in these patients through prospective validation.</p><p><strong>Materials and methods: </strong>To achieve our objectives, we enrolled a cohort of 227 advanced cancer patients receiving palliative care. The study population comprised 132 (58.1%) men and 95 (41.9%) women, with a median age of 52 years (Range: 20-81). Among them, 56 (24.7%) underwent chemotherapy, and 26 (11.5%) underwent palliative radiotherapy. We utilised the PPI score to categorise patients into three prognostic groups: (a) PPI score <4 indicating likely survival of more than 6 weeks; (b) PPI score 4-6 indicating likely survival shorter than 6 weeks; and (c) PPI score >6 indicating likely survival <3 weeks.</p><p><strong>Results: </strong>Through our analysis, we found that the PPI demonstrated limited predictive capabilities, particularly for short-term survival (<3 weeks). The PPI's performance metrics included a positive predictive value of 45.24%, a negative predictive value of 100%, a sensitivity of 100.00% and a specificity of 88.94%.</p><p><strong>Conclusion: </strong>In conclusion, our study establishes the limited reliability of the PPI in predicting short-term survival (<3 weeks) among patients in palliative care with advanced cancer. These findings underscore the PPI's potential as a valuable tool for healthcare professionals, aiding in the development of treatment plans and facilitating discussions on end-of-life care options with patients and their families. In addition, the PPI may assist healthcare professionals in identifying individuals who could benefit from more aggressive interventions or those approaching the end of life, thereby guiding the provision of additional support and care.</p>","PeriodicalId":13319,"journal":{"name":"Indian Journal of Palliative Care","volume":"30 4","pages":"353-357"},"PeriodicalIF":1.1,"publicationDate":"2024-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11618672/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142800532","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"A Multicentric Field Test to Study the Validity and Feasibility of the SHS-tool to Screen for Serious Health-related Suffering in Adult Patients with Cancer.","authors":"Nandini Vallath, Aneka Paul, Arunangshu Ghoshal, Jenifer Jeba Sundararaj, Kalpana Balakrishnan","doi":"10.25259/IJPC_13_2024","DOIUrl":"10.25259/IJPC_13_2024","url":null,"abstract":"&lt;p&gt;&lt;strong&gt;Objectives: &lt;/strong&gt;The 2017 Lancet Commission reports 'Serious Health-related Suffering' (SHS) as an abyss in healthcare services. It lists 20 common health conditions and 15 symptoms as commonly associated with SHS. In 2015, 80% of SHS prevalence, an estimated 61 million, was noted as from low-middle-income countries. Acknowledging the high prevalence of SHS in cancer patients and aligning with global efforts to address and alleviate the suffering, the National Cancer Grid of India developed and evaluated the SHS screening tool (SHS-tool). The SHS tool was developed during phase 1 of the study through a systematic consensus-building methodology. During phase 2, the validity and feasibility study of the SHS tool was completed through a multicentric field test, which is described here.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Materials and methods: &lt;/strong&gt;The SHS tool developed during phase 1 was field-tested across nine tertiary cancer care centres (TCC sites) selected from different healthcare sectors and regions of India. The study utilised a purposive sample of 254 cancer patients to evaluate the validity of the SHS screening tool at selected sites and additionally recorded the feasibility, relevance, acceptability and feedback comments from patients (&lt;i&gt;n&lt;/i&gt; = 121), research associates (&lt;i&gt;n&lt;/i&gt; = 11) and principal investigators (PIs) (&lt;i&gt;n&lt;/i&gt; = 9). A documented interview of the patient within the same timeframe by experienced personnel selected by the PI served as the standard.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Results: &lt;/strong&gt;The field-test TCC-sites represented government academic institutions, non-government and private sectors. The sites used patient waiting areas and inpatient/daycare wards for conducting field tests. The Cronbach's alpha of the SHS-tool questionnaire showed an internal consistency of 0.728. The tool detected SHS in 137/254 patients, compared to 116/254 through the interview method. The outcomes concurred with that of the interview in 64.17% of instances. The tool exhibited a sensitivity of 70% and specificity of 59%. 66.67% of patients might not have reached the interviewers if not for the field test processes. The feasibility questionnaire responses from patients (&lt;i&gt;n&lt;/i&gt; = 121) indicated ease of understanding (91.74%), ease of use (92.56%) and relevance (89.26%). The selected settings were found suitable by 96.69%. Feedback responses from research associates indicated ease of administration (10/11) and relevance (8/11) and found no reasons preventing its use (8/11). The feedback comments from the stakeholders were thematically grouped for insights.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Conclusion: &lt;/strong&gt;The SHS tool is validated for screening SHS where none exists. It has been found to be a feasible, relevant and acceptable tool for use in adult cancer patients attending TCCs across India. Insights from analysing the feedback comments from the stakeholders have been integrated as 'instruction for use' for refined implementation of the SHS tool. The SHS tool may be","PeriodicalId":13319,"journal":{"name":"Indian Journal of Palliative Care","volume":"30 3","pages":"239-251"},"PeriodicalIF":1.1,"publicationDate":"2024-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11450810/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142380715","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Communicating Care in Digital Social Spaces: Mixed-method Analysis of Influence of Social Media on Palliative Care.","authors":"Kriti Singh","doi":"10.25259/IJPC_338_2023","DOIUrl":"10.25259/IJPC_338_2023","url":null,"abstract":"<p><p>The paper is based on mixed-methods analysis, including qualitative (thematic analysis) and quantitative (word frequency and trends analysis), to thoroughly investigate the existing body of literature pertaining to the influence of social media (SM) on palliative care (PC). The time frame of the analysis is for a 5-year (2018-2023). The paper attempts to explore dominating themes and explore how SM has impacted the arena of palliative, how these platforms affect patient and community involvement and how successful digital communication tactics are when used to advocate for PC.</p>","PeriodicalId":13319,"journal":{"name":"Indian Journal of Palliative Care","volume":"30 3","pages":"189-199"},"PeriodicalIF":1.1,"publicationDate":"2024-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11450887/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142380719","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Neuropalliative Care Needs Checklist for Motor Neuron Disease and Parkinson's Disease: A Biopsychosocial Approach.","authors":"Lithin Zacharias, Priya Treesa Thomas, Manjusha G Warrier, Ravi Yadav, Suvarna Alladi, Atchayaram Nalini, Pramod Kumar Pal","doi":"10.25259/IJPC_181_2023","DOIUrl":"10.25259/IJPC_181_2023","url":null,"abstract":"<p><strong>Objectives: </strong>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).</p><p><strong>Materials and methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusion: </strong>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.</p>","PeriodicalId":13319,"journal":{"name":"Indian Journal of Palliative Care","volume":"30 3","pages":"232-238"},"PeriodicalIF":1.1,"publicationDate":"2024-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11450826/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142380722","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Palliative Care Aspects of Acute Intermittent Porphyria - A Case Report.","authors":"Neethu Susan Abraham, Seema Mishra, Saurabh Vig","doi":"10.25259/IJPC_14_2024","DOIUrl":"10.25259/IJPC_14_2024","url":null,"abstract":"<p><p>Acute intermitttent porphyria belongs to a rare group of diseases hallmarked by deficient biosynthesis of heme. It carries a significant symptom burden, both physical and emotional,and therefore palliative care has emerged as an essential tool in the armamentarium of porphyria management . It takes care of the patient as a whole and caters to all aspects that the disease process demands. There are many lacunae in the literature regarding the palliative management of porphyria. We are reporting a case of a 16-year-old female who presented with severe abdominal pain, lower backache and symmetrical bilateral lower limb pain to the palliative ward referred by the neurology department for supportive care. This case describes the palliative care aspects of porphyria management which was successfully provided in the palliative care unit right from referral till the last. A multidisciplinary palliative care team managed the patient, and the necessary interventions were provided to the patient and family. Palliative acre in AIP needs to be emphasized, and palliative care services need to be utilized in these cases. The unavailability of specific treatment measure, heme, in countries like India further emphasizes the need for long-term supportive care for the patient and family. The case shows the importance of palliative care throughout the disease course as it is a chronic disease with significant morbidity and carries a heavy symptom burden. This case provides the insight that rather than conventional management alone for such chronic diseases, palliative care should be incorportated. Early integration with palliative care helps in exploring all the domains of disease. This is one of the first cases reported highlighting palliative care in porphyria , bridging the gap in the literature.</p>","PeriodicalId":13319,"journal":{"name":"Indian Journal of Palliative Care","volume":"30 3","pages":"275-278"},"PeriodicalIF":1.1,"publicationDate":"2024-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11450846/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142380723","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}