Developing neuropalliative care for sporadic Creutzfeldt-Jakob Disease

References

• Nakatani E, Kanatani Y, Kaneda H, et al. Specific clinical signs and symptoms are predictive of clinical course in sporadic Creutzfeldt−Jakob disease. Eur J Neurol. 2016;23:1455–1462.
   PubMed Web of Science ®Google Scholar
• Creutzfeldt-Jakob disease fact sheet, Last updated May 9, 2018, Accessed on 2018, Accessed on May 9, 2018 May 9, 2018, Accessed on May 9, 2018, Accessed on May 9.
   Google Scholar
• Bechtel K, Geschwind MD. Ethics in prion disease. Prog Neurobiol. 2013;110:29–44.
   PubMed Web of Science ®Google Scholar
• McQuain JA, Galicia-Castillo MC, Morris DA. Palliative care issues in Creutzfeldt: jakob Disease #389. J Palliat Med. 2020;23:424–426.
   PubMed Web of Science ®Google Scholar
• Appleby BS, Yobs DR. Symptomatic treatment, care, and support of CJD patients. Handb Clin Neurol. 2018;153:399–408.
   PubMedGoogle Scholar
• Paterson RW, Torres-Chae CC, Kuo AL, et al. Differential diagnosis of Jakob-Creutzfeldt disease. Arch Neurol. 2012;69:1578–1582.
   PubMedGoogle Scholar
• Ford L, Rudge P, and Robinson K, Collinge J, Gorham M, Mead Set al. The most problematic symptoms of prion disease – an analysis of carer experiences. Int Psychogeriatr. 2019;31(8):1181-1190. doi:10.1017/S1041610218001588.
   PubMed Web of Science ®Google Scholar
• de Vries K, Sque M, Bryan K, et al. Variant Creutzfeldt-Jakob disease: need for mental health and palliative care team collaboration. Int J Palliat Nurs. 2003;9:512–520.
   PubMedGoogle Scholar
• Creutzfeldt CJ, Kluger B, Kelly AG, et al. Neuropalliative care: priorities to move the field forward. Neurology. 2018;91:217–226.
   PubMed Web of Science ®Google Scholar
• Robinson MT, Holloway RG. Palliative care in neurology. Mayo Clin Proc. 2017;92:1592–1601.
   PubMed Web of Science ®Google Scholar
• van der Steen JT, Radbruch L, Cmpm H, et al.; European Association for Palliative Care (EAPC). White paper defining optimal palliative care in older people with dementia: a Delphi study and recommendations from the European association for palliative care. Palliat Med. 2014;28:197–209.
   PubMed Web of Science ®Google Scholar
• Bailey B, Aranda S, Quinn K, et al. Creutzfeldt-Jakob disease: extending palliative care nursing knowledge. Int J Palliat Nurs. 2000;6:131–139.
   PubMedGoogle Scholar
• Das K, Davis R, Dutoit B, et al. Sporadic Creutzfeldt-Jakob disease: a description of two cases. Int Psychogeriatr. 2012;24:1183–1185.
   PubMed Web of Science ®Google Scholar
• Kranitz FJ, Simpson DM. Using non-pharmacological approaches for CJD patient and family support as provided by the CJD foundation and CJD insight. CNS Neurol Disord Drug Targets. 2009;8:372–379.
   PubMed Web of Science ®Google Scholar
• Geschwind MD. Prion diseases. Continuum (Minneap Minn). 2015;21:1612–1638.
   PubMedGoogle Scholar
• Mitchell SL, Teno JM, Kiely DK, et al. The clinical course of advanced dementia. N Engl J Med. 2009;361:1529–1538.
   PubMed Web of Science ®Google Scholar
• Appleby BS, Yobs DR. Symptomatic treatment, care, and support of CJD patients. Handb Clin Neurol. 2018;153:399–408.
   PubMedGoogle Scholar
• National Coalition for Hospice and Palliative Care. 2018 . Clinical Practice Guidelines for Quality Palliative Care. 4th ed. Richmond, VA, USA.https://www.nationalcoalitionhpc.org/wp-content/uploads/2020/07/NCHPC-NCPGuidelines_4thED_web_FINAL.pdf
   Google Scholar
• Parchi P, Giese A, Capellari S, et al. Classification of sporadic Creutzfeldt-Jakob disease based on molecular and phenotypic analysis of 300 subjects. Ann Neurol. 1999;46:224–233.
   PubMed Web of Science ®Google Scholar
• Collins SJ, Sanchez-Juan P, Masters CL, et al. Determinants of diagnostic investigation sensitivities across the clinical spectrum of sporadic Creutzfeldt-Jakob disease. Brain. 2006;129:2278–2287.
   PubMed Web of Science ®Google Scholar
• Information for funeral and crematory practitioners | creutzfeldt-Jakob disease, classic (CJD) | prion disease | CDC, Last updated September 7, 2021, Accessed on September 7, 2021.
   Google Scholar
• Lewis M, Glisic K, Jordan D, et al. OVERVIEW FOR FUNERAL SERVICE PROFESSIONALS. 3.
   Google Scholar
• Creutzfeldt-Jakob disease foundation, funeral professionals, Last updated August 23, 2016, Accessed on August 23, 2016.
   Google Scholar
• Bernacki RE, Block SD; American College of Physicians High Value Care Task Force. Communication about serious illness care goals: a review and synthesis of best practices. JAMA Intern Med. 2014;174:1994–2003.
   PubMed Web of Science ®Google Scholar
• Creutzfeldt CJ, Robinson MT, Holloway RG. Neurologists as primary palliative care providers. Neurol Clin Pract. 2016;6:40–48.
   PubMedGoogle Scholar
• Back A. Mastering communication with seriously Ill patients: balancing honesty with empathy and hope. New York: Cambridge University Pres, Cambridge England; 2009.
   Google Scholar
• Mataqi M, Aslanpour Z. Factors influencing palliative care in advanced dementia: a systematic review. BMJ Support Palliat Care. 2020;10:145–156.
   PubMed Web of Science ®Google Scholar
• Senderovich H, Retnasothie S. A systematic review of the integration of palliative care in dementia management. Palliat Support Care. 2020;18:495–506.
   PubMed Web of Science ®Google Scholar
• Bernstein Sideman A, Harrison KL, Garrett SB, et al.; Dementia Palliative Care Writing Group, Ritchie CS. Practices, challenges, and opportunities when addressing the palliative care needs of people living with dementia: specialty memory care provider perspectives. Alzheimers Dement (N Y). 2021;7:e12144.
   PubMedGoogle Scholar
• Boyd ND, Naasan G, Harrison KL, et al. Characteristics of people with dementia lost to follow-up from a dementia care center. Int J Geriatr Psychiatry. 2021;37. DOI:10.1002/gps.5628
   PubMed Web of Science ®Google Scholar
• Naasan G, Boyd ND, and Harrison KL, et al. Group G dementia geriatric palliative care writing (2021) Advance directive and POLST documentation in decedents with dementia at a memory care center: the importance of early advanced care planning. Neurol Clin Pract. Feb 2022, 12(1): 4-21. DOI: 10.1212/CPJ.0000000000001123 https://cp.neurology.org/content/12/1/14
   Google Scholar
• Rendle KA, Abramson CM, Garrett SB, et al. Beyond exploratory: a tailored framework for designing and assessing qualitative health research. BMJ Open. 2019;9:e030123.
   PubMed Web of Science ®Google Scholar
• Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care. 2007;19:349–357.
   PubMed Web of Science ®Google Scholar
• Takada LT, Kim M-O, Cleveland RW, et al. Genetic prion disease: experience of a rapidly progressive dementia center in the United States and a review of the literature. Am J Med Genet B Neuropsychiatr Genet. 2017;174:36–69.
   PubMed Web of Science ®Google Scholar
• Brown DR, Schmidt B, Kretzschmar HA. Role of microglia and host prion protein in neurotoxicity of a prion protein fragment. Nature. 1996;380:345–347.
   PubMed Web of Science ®Google Scholar
• Lenore K, Meredith W. The mini-mental state examination (MMSE). J Gerontol Nurs. 1999;25:8–9.
   Google Scholar
• Morris JC. Clinical dementia rating: a reliable and valid diagnostic and staging measure for dementia of the Alzheimer type. Int Psychogeriatr. 1997;9(1):173–176. discussion 177-178.
   PubMedGoogle Scholar
• Yesavage JA, Brink TL, Rose TL, et al. Development and validation of a geriatric depression screening scale: a preliminary report. J Psychiatr Res. 1982;17:37–49.
   PubMed Web of Science ®Google Scholar
• Thompson AGB, Lowe J, Fox Z, et al. The medical research council prion disease rating scale: a new outcome measure for prion disease therapeutic trials developed and validated using systematic observational studies. Brain. 2013;136:1116–1127.
   PubMed Web of Science ®Google Scholar
• Hartigan I. A comparative review of the Katz ADL and the Barthel Index in assessing the activities of daily living of older people. Int J Older People Nurs. 2007;2:204–212.
   PubMedGoogle Scholar
• Hermann P, Appleby B, Brandel J-P, et al. Biomarkers and diagnostic guidelines for sporadic Creutzfeldt-Jakob disease. Lancet Neurol. 2021;20:235–246.
   PubMed Web of Science ®Google Scholar
• Kim M-O, Takada LT, Wong K, et al. Genetic PrP prion diseases. Cold Spring Harb Perspect Biol. 2018;10:a033134.
   PubMed Web of Science ®Google Scholar
• Boeije H. A purposeful approach to the constant comparative method in the analysis of qualitative Interviews. Qual Quantity. 2002;36:391–409.
   Web of Science ®Google Scholar
• Cummings JL, Mega M, Gray K, et al. The Neuropsychiatric Inventory: comprehensive assessment of psychopathology in dementia. Neurology. 1994;44:2308–2314.
   PubMed Web of Science ®Google Scholar
• Forner SA, Takada LT, Bettcher BM, et al. Comparing CSF biomarkers and brain MRI in the diagnosis of sporadic Creutzfeldt-Jakob disease. Neurol Clin Pract. 2015;5:116–125.
   PubMedGoogle Scholar
• Baile WF, Buckman R, Lenzi R, et al. SPIKES—A Six-step protocol for delivering bad news: application to the patient with cancer. Oncologist. 2000;5:302–311.
   PubMedGoogle Scholar
• Bernacki R, Hutchings M, Vick J, et al. Development of the Serious Illness Care Program: a randomised controlled trial of a palliative care communication intervention. BMJ Open. 2015;5:e009032.
   PubMed Web of Science ®Google Scholar
• Piers R, Albers G, Gilissen J, et al. Advance care planning in dementia: recommendations for healthcare professionals. BMC Palliat Care. 2018;17:88.
   PubMed Web of Science ®Google Scholar
• Possin KL, Merrilees JJ, Dulaney S, et al. Effect of collaborative dementia care via telephone and internet on quality of life, caregiver well-being, and health care use: the care ecosystem randomized clinical trial. JAMA Intern Med. 2019;179:1658.
   PubMed Web of Science ®Google Scholar
• Rosa TD, Possin KL, Bernstein A, et al. Variations in costs of a collaborative care model for dementia. J Am Geriatr Soc. 2019;67:2628–2633.
   PubMed Web of Science ®Google Scholar
• Bernstein A, Merrilees J, Dulaney S, et al. Using care navigation to address caregiver burden in dementia: a qualitative case study analysis. Alzheimers Dement (N Y). 2020;6:e12010.
   PubMedGoogle Scholar
• Bernstein A, Harrison KL, Dulaney S, et al. The role of care navigators working with people with dementia and their caregivers. J Alzheimers Dis. 2019;71:45–55.
   PubMed Web of Science ®Google Scholar
• van der Smissen D, Overbeek A, van Dulmen S, et al. The feasibility and effectiveness of web-based advance care planning programs: scoping review. J Med Internet Res. 2020;22:e15578.
   PubMed Web of Science ®Google Scholar
• Sudore RL, Schillinger D, Katen MT, et al. Engaging Diverse English- and Spanish-Speaking Older Adults in Advance Care Planning: the PREPARE Randomized Clinical Trial. JAMA Intern Med. 2018;178:1616.
   PubMed Web of Science ®Google Scholar
• Sudore RL, Boscardin J, Feuz MA, et al. Effect of the PREPARE website vs an easy-to-read advance directive on advance care planning documentation and engagement among veterans: a randomized clinical trial. JAMA Intern Med. 2017;177:1102.
   PubMed Web of Science ®Google Scholar
• Wolff JL, Roter DL, Boyd CM, et al. Patient-Family Agenda Setting for Primary Care Patients with Cognitive Impairment: the SAME Page Trial. J Gen Intern Med. 2018;33:1478–1486.
   PubMed Web of Science ®Google Scholar
• O’Shea B, Martin D, Brennan B, et al. Are we ready to “think ahead”? Acceptability study using an innovative end of life planning tool. Ir Med J. 2014;107:138–140.
   PubMedGoogle Scholar
• Mitchell SL, Shaffer ML, Cohen S, et al. An advance care planning video decision support tool for nursing home residents with advanced dementia: a cluster randomized clinical trial. JAMA Intern Med. 2018;178:961–969.
   PubMed Web of Science ®Google Scholar