智力和发育障碍者的姑息治疗

IF 3.2 2区医学 Q2 CLINICAL NEUROLOGY

Journal of pain and symptom management Pub Date : 2025-04-10 DOI:10.1016/j.jpainsymman.2025.02.095

Marsha Perales-Hull MD, Mary Scheerer MD

{"title":"智力和发育障碍者的姑息治疗","authors":"Marsha Perales-Hull MD, Mary Scheerer MD","doi":"10.1016/j.jpainsymman.2025.02.095","DOIUrl":null,"url":null,"abstract":"<div><h3>Outcomes</h3><div>1. Participants will be able to understand more about the social, medical, legal and ethical concerns of patients with intellectual and developmental disabilities.</div><div>2. Participants will be able to appreciate how palliative care can be integrated into the care of people with intellectual and developmental disabilities to enhance their experiences nearing the end of life.</div></div><div><h3>Key Message</h3><div>Patients with intellectual and developmental disabilities (IDD) make up approximately 2% of the U.S population. Patients with IDD are now dying of similar conditions found in the general population. Few are given access to care at end-of-life. This presentation addresses how palliative care can be integrated into the care of a patient with IDD.</div></div><div><h3>Abstract</h3><div>Patients with intellectual and developmental disabilities (IDD) make up approximately 2% of the U.S population (5). Advances in medicine have increased life expectancy in patients with IDD and they are now dying of similar conditions found in the general population (3). However, few are given access to care at end-of-life (2). The objectives of this presentation are: 1) define what IDD is and why it is important to understand more about this patient population, 2) Identify legal concerns regarding patients with IDD, 3) Describe how hospice and palliative care can be integrated in their care, 4) Understand how an interdisciplinary approach to care can enhance the medical care of patients with IDD. Access to palliative and hospice care is a continuing disparity among this patient population and literature search shows that we need more research in how best to use palliative care to help patients with IDD and chronic life limiting illness.</div></div><div><h3>References</h3><div>1. Adam E, Sleeman KE, Brearley S, Hunt K, Tuffrey-Wijne I. The palliative care needs of adults with intellectual disabilities and their access to palliative care services: A systematic review. Palliat Med. 2020 Sep;34(8):1006-1018. doi: 10.1177/0269216320932774. Epub 2020 Jun 17. PMID: 32552409; PMCID: PMC7596767. 2. Friedman SL, Helm DT, Woodman AC. Unique and universal barriers: hospice care for aging adults with intellectual disability. Am J Intellect Dev Disabil. 2012 Nov;117(6):509-32. doi: 10.1352/1944-7558-117.6.509. PMID: 23167489. 3. McGinley JM, Marsack-Topolewski CN. A Comparative Case Study of Hospice and Hospital End-of-Life Care for Aging Adults With Developmental Disabilities. Glob Qual Nurs Res. 2022 May 11;9:23333936221087626. doi: 10.1177/23333936221087626. PMID: 35572367; PMCID: PMC9102126. 4. Moore CM, Pan CX, Roseman K, Stephens MM, Bien-Aime C, Morgan AC, Ross W, Castillo MC, Palathra BC, Jones CA, Ailey S, Tuffrey-Wijne I, Smeltzer SC, Tobias J. Top Ten Tips Palliative Care Clinicians Should Know About Navigating the Needs of Adults with Intellectual Disabilities. J Palliat Med. 2022 Dec;25(12):1857-1864. doi: 10.1089/jpm.2022.0384. Epub 2022 Sep 9. PMID: 36083260 5. How many people are affected/at risk for intellectual and developmental disabilities (IDDs)? | NICHD - Eunice Kennedy Shriver National Institute of Child Health and Human Development (nih.gov) <span><span>https://www.nichd.nih.gov/health/topics/idds/conditioninfo/risk</span><svg><path></path></svg></span></div></div>","PeriodicalId":16634,"journal":{"name":"Journal of pain and symptom management","volume":"69 5","pages":"Pages e467-e468"},"PeriodicalIF":3.2000,"publicationDate":"2025-04-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"Palliative Care for People With Intellectual and Developmental Disabilities\",\"authors\":\"Marsha Perales-Hull MD, Mary Scheerer MD\",\"doi\":\"10.1016/j.jpainsymman.2025.02.095\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<div><h3>Outcomes</h3><div>1. Participants will be able to understand more about the social, medical, legal and ethical concerns of patients with intellectual and developmental disabilities.</div><div>2. Participants will be able to appreciate how palliative care can be integrated into the care of people with intellectual and developmental disabilities to enhance their experiences nearing the end of life.</div></div><div><h3>Key Message</h3><div>Patients with intellectual and developmental disabilities (IDD) make up approximately 2% of the U.S population. Patients with IDD are now dying of similar conditions found in the general population. Few are given access to care at end-of-life. This presentation addresses how palliative care can be integrated into the care of a patient with IDD.</div></div><div><h3>Abstract</h3><div>Patients with intellectual and developmental disabilities (IDD) make up approximately 2% of the U.S population (5). Advances in medicine have increased life expectancy in patients with IDD and they are now dying of similar conditions found in the general population (3). However, few are given access to care at end-of-life (2). The objectives of this presentation are: 1) define what IDD is and why it is important to understand more about this patient population, 2) Identify legal concerns regarding patients with IDD, 3) Describe how hospice and palliative care can be integrated in their care, 4) Understand how an interdisciplinary approach to care can enhance the medical care of patients with IDD. Access to palliative and hospice care is a continuing disparity among this patient population and literature search shows that we need more research in how best to use palliative care to help patients with IDD and chronic life limiting illness.</div></div><div><h3>References</h3><div>1. Adam E, Sleeman KE, Brearley S, Hunt K, Tuffrey-Wijne I. The palliative care needs of adults with intellectual disabilities and their access to palliative care services: A systematic review. Palliat Med. 2020 Sep;34(8):1006-1018. doi: 10.1177/0269216320932774. Epub 2020 Jun 17. PMID: 32552409; PMCID: PMC7596767. 2. Friedman SL, Helm DT, Woodman AC. Unique and universal barriers: hospice care for aging adults with intellectual disability. Am J Intellect Dev Disabil. 2012 Nov;117(6):509-32. doi: 10.1352/1944-7558-117.6.509. PMID: 23167489. 3. McGinley JM, Marsack-Topolewski CN. A Comparative Case Study of Hospice and Hospital End-of-Life Care for Aging Adults With Developmental Disabilities. Glob Qual Nurs Res. 2022 May 11;9:23333936221087626. doi: 10.1177/23333936221087626. PMID: 35572367; PMCID: PMC9102126. 4. Moore CM, Pan CX, Roseman K, Stephens MM, Bien-Aime C, Morgan AC, Ross W, Castillo MC, Palathra BC, Jones CA, Ailey S, Tuffrey-Wijne I, Smeltzer SC, Tobias J. Top Ten Tips Palliative Care Clinicians Should Know About Navigating the Needs of Adults with Intellectual Disabilities. J Palliat Med. 2022 Dec;25(12):1857-1864. doi: 10.1089/jpm.2022.0384. Epub 2022 Sep 9. PMID: 36083260 5. How many people are affected/at risk for intellectual and developmental disabilities (IDDs)? | NICHD - Eunice Kennedy Shriver National Institute of Child Health and Human Development (nih.gov) <span><span>https://www.nichd.nih.gov/health/topics/idds/conditioninfo/risk</span><svg><path></path></svg></span></div></div>\",\"PeriodicalId\":16634,\"journal\":{\"name\":\"Journal of pain and symptom management\",\"volume\":\"69 5\",\"pages\":\"Pages e467-e468\"},\"PeriodicalIF\":3.2000,\"publicationDate\":\"2025-04-10\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Journal of pain and symptom management\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://www.sciencedirect.com/science/article/pii/S0885392425001551\",\"RegionNum\":2,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q2\",\"JCRName\":\"CLINICAL NEUROLOGY\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Journal of pain and symptom management","FirstCategoryId":"3","ListUrlMain":"https://www.sciencedirect.com/science/article/pii/S0885392425001551","RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"CLINICAL NEUROLOGY","Score":null,"Total":0}

引用次数: 0

摘要

Outcomes1。参与者将能够更多地了解智力和发育障碍患者的社会、医疗、法律和伦理问题。与会者将能够了解如何将姑息治疗纳入智力和发育障碍患者的护理中，以增强他们在生命接近尾声时的体验。智力和发育障碍（IDD）患者约占美国人口的2%。IDD患者现在死于在一般人群中发现的类似病症。很少有人能在生命结束时得到照顾。本报告讨论了如何将姑息治疗纳入IDD患者的护理中。摘要智力和发育障碍（IDD）患者约占美国人口的2%(5)。医学的进步提高了IDD患者的预期寿命，他们现在死于与普通人群相似的疾病(3)。然而，很少有人在生命结束时获得护理(2)。1)定义IDD是什么以及为什么更多地了解这一患者群体很重要，2)确定关于IDD患者的法律问题，3)描述如何将临终关怀和姑息治疗整合到他们的护理中，4)了解跨学科的护理方法如何增强IDD患者的医疗护理。在这一患者群体中，获得姑息治疗和临终关怀的机会仍然存在差距，文献检索表明，我们需要更多的研究来最好地利用姑息治疗来帮助患有IDD和慢性生命限制疾病的患者。李建军，李建军，李建军，等。成人智障患者姑息治疗需求及其可及性的研究进展。中华内科杂志，2020,34(8):1006-1018。doi: 10.1177 / 0269216320932774。2020年6月17日。PMID: 32552409;PMCID: PMC7596767。2. 王晓明，王晓明，王晓明。老年智障患者临终关怀的研究进展。[J] .智力发展与残疾。2012,11(6):509-32。1944 - 7558 - 117.6.509 doi: 10.1352 /。PMID: 23167489。3. McGinley JM, Marsack-Topolewski CN。发展障碍长者临终关怀与医院临终关怀之个案比较研究。全球护士资格认证，2022年5月11日；9:23333936221087626。doi: 10.1177 / 23333936221087626。PMID: 35572367;PMCID: PMC9102126。4. Moore CM, Pan CX, Roseman K, Stephens MM, Bien-Aime C, Morgan AC, Ross W, Castillo MC, Palathra BC, Jones CA, Ailey S, Tuffrey-Wijne I, Smeltzer SC, Tobias J.成人智障患者姑息治疗临床医生应对需求的10个建议。[J]中华检验医学杂志，2016;25(12):1857-1864。doi: 10.1089 / jpm.2022.0384。Epub 2022 9月9日pmi: 36083260有多少人受到智力和发育障碍（IDDs）的影响/面临风险？| NICHD -尤尼斯·肯尼迪·施莱弗国家儿童健康和人类发展研究所（nih.gov） https://www.nichd.nih.gov/health/topics/idds/conditioninfo/risk

本文章由计算机程序翻译，如有差异，请以英文原文为准。

查看原文本刊更多论文

Palliative Care for People With Intellectual and Developmental Disabilities

Outcomes

1. Participants will be able to understand more about the social, medical, legal and ethical concerns of patients with intellectual and developmental disabilities.

2. Participants will be able to appreciate how palliative care can be integrated into the care of people with intellectual and developmental disabilities to enhance their experiences nearing the end of life.

Key Message

Patients with intellectual and developmental disabilities (IDD) make up approximately 2% of the U.S population. Patients with IDD are now dying of similar conditions found in the general population. Few are given access to care at end-of-life. This presentation addresses how palliative care can be integrated into the care of a patient with IDD.

Abstract

Patients with intellectual and developmental disabilities (IDD) make up approximately 2% of the U.S population (5). Advances in medicine have increased life expectancy in patients with IDD and they are now dying of similar conditions found in the general population (3). However, few are given access to care at end-of-life (2). The objectives of this presentation are: 1) define what IDD is and why it is important to understand more about this patient population, 2) Identify legal concerns regarding patients with IDD, 3) Describe how hospice and palliative care can be integrated in their care, 4) Understand how an interdisciplinary approach to care can enhance the medical care of patients with IDD. Access to palliative and hospice care is a continuing disparity among this patient population and literature search shows that we need more research in how best to use palliative care to help patients with IDD and chronic life limiting illness.

References

1. Adam E, Sleeman KE, Brearley S, Hunt K, Tuffrey-Wijne I. The palliative care needs of adults with intellectual disabilities and their access to palliative care services: A systematic review. Palliat Med. 2020 Sep;34(8):1006-1018. doi: 10.1177/0269216320932774. Epub 2020 Jun 17. PMID: 32552409; PMCID: PMC7596767. 2. Friedman SL, Helm DT, Woodman AC. Unique and universal barriers: hospice care for aging adults with intellectual disability. Am J Intellect Dev Disabil. 2012 Nov;117(6):509-32. doi: 10.1352/1944-7558-117.6.509. PMID: 23167489. 3. McGinley JM, Marsack-Topolewski CN. A Comparative Case Study of Hospice and Hospital End-of-Life Care for Aging Adults With Developmental Disabilities. Glob Qual Nurs Res. 2022 May 11;9:23333936221087626. doi: 10.1177/23333936221087626. PMID: 35572367; PMCID: PMC9102126. 4. Moore CM, Pan CX, Roseman K, Stephens MM, Bien-Aime C, Morgan AC, Ross W, Castillo MC, Palathra BC, Jones CA, Ailey S, Tuffrey-Wijne I, Smeltzer SC, Tobias J. Top Ten Tips Palliative Care Clinicians Should Know About Navigating the Needs of Adults with Intellectual Disabilities. J Palliat Med. 2022 Dec;25(12):1857-1864. doi: 10.1089/jpm.2022.0384. Epub 2022 Sep 9. PMID: 36083260 5. How many people are affected/at risk for intellectual and developmental disabilities (IDDs)? | NICHD - Eunice Kennedy Shriver National Institute of Child Health and Human Development (nih.gov) https://www.nichd.nih.gov/health/topics/idds/conditioninfo/risk

求助全文

通过发布文献求助，成功后即可免费获取论文全文。去求助

来源期刊

Journal of pain and symptom management 医学-临床神经学

CiteScore

8.90

自引率

6.40%

发文量

821

审稿时长

26 days

期刊介绍： The Journal of Pain and Symptom Management is an internationally respected, peer-reviewed journal and serves an interdisciplinary audience of professionals by providing a forum for the publication of the latest clinical research and best practices related to the relief of illness burden among patients afflicted with serious or life-threatening illness.