Research statistics, methods and dilemmas in palliative

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Presentation given to KU Palliative Medicine Fellowship April 15th, 2010
Revised March 17, 2011

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  • Ten of the 11 studies reviewed demonstratedpositive patient attitudes toward research,whereas only four established negative themes.Increased hospital admissionsScreening questions Problematic symptomsToo much hasslePerceived lack of self-benefitToo unwellDistancePatient wished to wait‘‘Didn’t want to’’ or ‘‘not interested’’TransportConcern RCTs’ ‘‘dummy’’ arm wouldworsen symptoms
  • Ten of the 11 studies reviewed demonstratedpositive patient attitudes toward research,whereas only four established negative themes.Increased hospital admissionsScreening questions Problematic symptomsToo much hasslePerceived lack of self-benefitToo unwellDistancePatient wished to wait‘‘Didn’t want to’’ or ‘‘not interested’’TransportConcern RCTs’ ‘‘dummy’’ arm wouldworsen symptoms
  • Research statistics, methods and dilemmas in palliative

    1. 1. Research Statistics, Methods and Dilemmas in Palliative Care<br />Christian Sinclair, MD, FAAHPM<br />April 15th, 2010<br />
    2. 2. Objectives<br />1. Identify specific barriers to research in palliative care populations<br />2, Highlight strategies for increased availability for publication and research in academic and non-academic palliative care venues.<br />3. Discuss basic models of structuring research for symptom control<br />
    3. 3. Dogmatic Battle<br />research does not belong<br />to modern hospice care<br />vs.<br />all medical treatment needs<br />to be evidence based<br />
    4. 4. History<br />St. Christopher’s Hospice (London, 1967)<br />‘a scientific programme concerned with the discriminating use of drugs with tender loving care.’<br />Loss of research focus with mainstreaming<br />Dollars flowed towards supporting clinical services<br />Saunders C. Hospice Care. Am J Medicine. 1978. 65, 76-8.<br />
    5. 5. Call to Action<br />Three Institute of Medicine reports<br />Two NIH State of the science conferences<br />AAHPM Research committee<br />“Need substantial investments in research infrastructure, training, mentoring, and grants”<br />NPCRC Website<br />
    6. 6. Current Approach to Research<br />Experiential and anecdotal<br />‘The serendipity model’<br />Publish expert guidelines<br />Identifies knowledge gaps<br />Few centers capable of regular consistent research<br />
    7. 7. Barriers to Palliative Care Research<br />Funding<br />Infrastructure<br />Training/Mentor availability<br />Whole person approach<br />Rapidly changing patient population<br />Ethics<br />Research design<br />
    8. 8. Barrier: Lack of Funding<br /><5 % of palliative care investigators rec’d NIH Grants<br />>50% from private sector philanthropy<br />Robert Woods Johnson Foundation<br />Open Society Institute<br />Fetzer Institute<br />Mayday Fund<br />A significant minority with no funding at all<br /><1% of all NIH grants on palliative care issues<br />Gelfman LP, Morrison RS. Research funding for palliative medicine. J Palliat Med. 2008<br />
    9. 9. Solution: Lack of Funding<br />Find money trees<br />Change development requests/distribution<br />Use private foundation to support infrastructure over single studies<br />Write your congressional representatives<br />Find areas pharma would be interested in<br />
    10. 10. Barriers: Lack of Infrastructure<br />Closely related to funding<br />Foundation dollars driven to clinical services<br />Community hospices<br />Provide bulk of palliative care<br />Yet little experience/culture of research<br />Academic centers <br />Palliative care low priority compared to others<br />
    11. 11. Solution: Lack of Infrastructure<br />Collaborate with related fields in an institution<br />Collaborate with research centers<br />NPCRC Grants for infrastructure/collaboration<br />Increase workforce to decrease clinical time<br />Co-opt QI/QA staff<br />Develop research networks<br />PoPCRN – Jean Kutner<br />
    12. 12. Barriers: Lack of Training/Mentors<br />Palliative medicine fellowships<br />Most are 1-year, few do 2-year with research<br />Just starting 2nd wave of key researchers<br />Morrison, Goldstein, Prigerson, Abernethy, Kutner<br />
    13. 13. Solution: Lack of Training/Mentors<br />Research retreats<br />NPCRC – Annual research retreat<br />AAHPM – Leadership Education and Academic Development project (LEAD)<br />AAHPM – Mentors project<br />Find mentors in other fields within institution<br />
    14. 14. Barriers to Palliative Care Research<br />Funding<br />Infrastructure<br />Training/Mentor availability<br />Whole person approach<br />Rapidly changing patient population<br />Ethics<br />Research design<br />
    15. 15. Barriers: Whole Person Approach<br />Primacy of the individual as whole person<br />Ethical dilemma pitting four major bioethical principles<br />Emphasis away from bio-medical model<br />Reinforced by an interdisciplinary approach<br />Clinical duties of the day win over research<br />
    16. 16. Solutions: Whole Person Approach<br />Research is more than a nice add-on<br />Ethically imperative to treat the individual correctly<br />Reinforce the good aspects of the bio-medical model<br />Having research staff separate from clinical<br />
    17. 17. Barriers: Rapidly Changing Patients<br />The prognostic dilemma – research attrition<br />Short temporal access to patients<br />US Hospice median LOS – Three weeks<br />Altered mental status and informed consent<br />Patients don’t want to participate (?)<br />Heterogeneous patient population<br />Multi-system disease<br />Polypharmacy<br />NHPCO Facts & Figures Oct 2009. <br />
    18. 18. Solutions: Rapidly Changing Patients<br />Research prognostication – objectively!<br />Automatic research enrollment at admission<br />Carefully screen for ability to consent<br />Develop consent procedures for proxies<br />Heterogeneous, polypharmacy can be helpful<br />It is who you are talking care of anyway<br />PPS studies are great examples<br />Harrold et al. Is PPS a useful predictor of mortality in a heterogeneous hospice population? J Palliat Med. 2005<br />
    19. 19. Do Patients Want to Participate?<br />Positive themes emerge (60-90%)<br />Altruism<br />Benefit self<br />Maintaining hope<br />Few negative themes (10-30%)<br />White C. 2009<br />
    20. 20. Do Patients Want to Participate?<br />Pautex S et al. Is Research Really Problematic in Palliative Care? A Pilot Study. JPSM 2005<br />Anorexia<br />Delirium<br />
    21. 21. Barriers: Research Ethics<br />IRB approval<br />Harm of asking dying people about dying (?)<br />Informed consent<br />Appropriate methodology<br />Obligation to do research to please staff<br />Pediatric populations<br />
    22. 22. Solutions: Research Ethics<br />Work closely with IRB, explain study well<br />Patients interested in research<br />Careful informed consent<br />Understand research methodology<br />Separate research and clinical staff<br />
    23. 23. Research Methods<br />Evidence based medicine<br />Study designs:<br />Observational v. Interventional<br />Size of study<br />Singe vs. multi center design<br />Quality initiative<br />Domain of study<br />
    24. 24. Areas of Study<br />Grant et al. Current Status of Pall. Care—Clinical Implementation, Education, & Research. 2009<br />
    25. 25. Research Methods<br />Observational<br />Case study/series<br />Severity<br />Prevalence<br />Descriptive<br />Narrative<br />Retrospective<br />Case-control v cohort<br />
    26. 26. Wikipedia<br />
    27. 27. Research Methods<br />Interventional<br />Tool validation<br />Randomized<br />Blinded<br />Quasi-experimental<br />Research Methods Knowledge Base<br />
    28. 28. National Palliative Care Research Center<br />Established 2005<br />Headed by Sean Morrison, MD<br />Current AAHPM president<br />Based out of Mt. Sinai SOM<br />Funded by<br />
    29. 29. Future<br />American Cancer Society<br />$1.5M towards palliative care research<br />136 applicants with majority in the funding range<br />Only 7 applicants were given grants<br />Lack of funds<br />
    30. 30. Future<br />National Palliative Care Research Center<br />101 applicants<br />Multiple levels of grants<br />Exploratory/Pilot<br />Career development<br />Infrastructure support<br />Research design/statistical support<br />
    31. 31. Summary<br />Many significant barriers exist to good palliative care<br />With applied effort they may be overcome<br />Patients are not afraid of research <br />Don’t be afraid to ask<br />Funding and mentorship opportunities exist<br />
    32. 32. References<br /> <br />BrueraE. Ethical issues in palliative care research. J Palliat Care. 1994 Autumn;10(3):7-9. PubMed PMID: 7531237.<br />  <br />GelfmanLP, Morrison RS. Research funding for palliative medicine. J Palliat Med. 2008 Jan-Feb;11(1):36-43. Review. PubMed PMID: 18370891.<br />  <br />Grant M, Elk R, Ferrell B, Morrison RS, von Gunten CF. Current status of palliative care--clinical implementation, education, and research. CA Cancer J Clin. 2009 Sep-Oct;59(5):327-35. PubMed PMID: 19729681.<br />  <br />JochamHR, Dassen T, Widdershoven G, Halfens R. Quality of life in palliative care cancer patients: a literature review. J ClinNurs. 2006 Sep;15(9):1188-95. Review. PubMed PMID: 16911060.<br />  <br />KaasaS, Caraceni A. Palliative cancer care research. Palliat Med. 2010 Apr;24(3):259-60. PubMed PMID: 20371636.<br /> <br />KaasaS, Radbruch L. Palliative care research--priorities and the way forward. EurJ Cancer. 2008 May;44(8):1175-9. Epub 2008 Apr 18. PubMed PMID: 18374560.<br /> <br />
    33. 33. References<br />Kaasa S, Hjermstad MJ, Loge JH. Methodological and structural challenges in palliative care research: how have we fared in the last decades? Palliat Med. 2006 Dec;20(8):727-34. Review. PubMed PMID: 17148527.<br />  <br />Kaasa S, De Conno F. Palliative care research. Eur J Cancer. 2001 Oct;37 Suppl 8:S153-9. Review. PubMed PMID: 11602381. <br />  <br />Kramer BJ, Christ GH, Bern-Klug M, Francoeur RB. A national agenda for social work research in palliative and end-of-life care. J Palliat Med. 2005 Apr;8(2):418-31. Review. PubMed PMID: 15890053.<br />  <br />Rinck GC, van den Bos GA, Kleijnen J, de Haes HJ, Schadé E, Veenhof CH. Methodologic issues in effectiveness research on palliative cancer care: a systematic review. J ClinOncol. 1997 Apr;15(4):1697-707. Review. PubMed PMID: 9193371.<br />Saunders C. Hospice Care. Am J Medicine. 1978. 65, 76-8. PMID: 81612<br />White C, Hardy J. What do palliative care patients and their relatives think about research in palliative care?-a systematic review. Support Care Cancer. 2009 Aug 25. [Epub ahead of print] PubMed PMID: 19705165.<br />
    34. 34. References<br />Todd AMH et al. A Systematic Review Examining the Literature on Attitudes of Patients with Advanced Cancer Toward Research. JPSM 2009 37(6), p. 1078-1085, DOI: 10.1016/j.jpainsymman.2008.07.009<br />Pautex S et al. Is Research Really Problematic in Palliative Care? A Pilot Study. JPSM 2005 Vol. 30, Issue 2, Pages 109-111, DOI: 10.1016/j.jpainsymman.2005.05.010<br />

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