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Challenges and Opportunities in Pain Management Disparities Research: Implications for Clinical Practice, Advocacy, and Policy

      Abstract

      Due to high profile initiatives at the national level, awareness of inadequate pain care affecting many groups in our society has never been greater. Nevertheless, increased awareness of pain disparities and the initiatives to address these disparities have yielded only modest progress, most notably in the form of growing appreciation that pain disparities likely result from multiple factors, including biological, psychological, environmental, health system, and cultural factors. Much less progress has been made in developing interventions that target these multiple determinants to reduce pain management disparities. In this paper we discuss key ethical and methodological challenges that undermine our capacity to investigate and develop meaningful interventions to improve pain outcomes among vulnerable populations. Key challenges in the areas of research engagement, recruitment, design, and measurement are discussed from both scientific and normative standpoints. Specific opportunities within emerging research paradigms to improve designs and measures are also discussed. Finally, we conclude with identifying potential synergies between the pain management disparities research agenda and the broader areas of clinical practice, advocacy, and policy that could help to move the field forward.

      Perspective

      Researchers studying disparities in pain care face a number of ethical and methodological challenges that must be addressed to advance the field towards eliminating disparities. We discuss these ethical and methodological challenges and propose opportunities for paradigmatic revisions in areas of research engagement, design, measurement, advocacy, and policy.

      Key words

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      References

      1. Agency for Healthcare Research and Quality: Health Information Technology. Available at: http://healthit.ahrq.gov/portal/server.pt/community/ahrq_national_resource_center_for_health_it/650. Accessed January 2, 2011

        • Akechi T.
        • Okamura H.
        • Nishiwaki Y.
        • Uchitomi Y.
        Predictive factors for suicidal ideation in patients with unresectable lung carcinoma.
        Cancer. 2002; 95: 1085-1093
      2. Alliance for Justice: Immigrant Advocacy Toolkit. Available at: http://www.afj.org/for-nonprofits-foundations/immigrant-advocacy-toolkit/what-is-advocacy.pdf. Accessed November 8, 2011

        • Alvarez R.A.
        • Vasquez E.
        • Mayorga C.C.
        • Feaster D.J.
        • Mitrani V.B.
        Increasing minority research participation through community organization outreach.
        West J Nurs Res. 2006; 28: 541-560
      3. American Pain Foundation: Position Statement on Access to Care. Available at: http://www.painfoundation.org/about/position-statements/access-to-pain-care-august2010.html. Accessed July 11, 2011

        • American Pain Society, Organizing Committee of the Pain and Disparities Special Interest Group
        Racial and Ethnic Identifiers in Pain Management: The Importance to Research, Clinical Practice, and Public Health Policy.
        APS Bulletin. 2005; : 7-10
        • Amtmann D.
        • Cook K.F.
        • Jensen M.P.
        • Chen W.H.
        • Choi S.
        • Revicki D.
        • Cella D.
        • Rothrock N.
        • Keefe F.
        • Callahan L.
        • Lai J.S.
        Development of a PROMIS item bank to measure pain interference.
        Pain. 2010; 150: 173-182
        • Anders R.
        • Olson T.
        • Robinson K.
        • Wiebe J.
        • DiGregorio R.
        • Solis G.
        • Albrechtsen J.
        • Bean N.
        • Ortiz M.
        A health survey of a colonia located on the West Texas, US/Mexico border.
        J Immigr Minor Health. 2008; 12: 361-369
        • Anderson K.O.
        • Green C.R.
        • Payne R.
        Racial and ethnic disparities in pain: Causes and consequences of unequal care.
        J Pain. 2009; 10: 1187-1204
        • Bautmans I.
        • Van Arken J.
        • Van Mackelenberg M.
        • Mets T.
        Rehabilitation using manual mobilization for thoracic kyphosis in elderly postmenopausal patients with osteoporosis.
        J Rehabil Med. 2010; 42: 129-135
        • Bonham V.L.
        Race, ethnicity, and pain treatment: Striving to understand the causes and solutions to the disparities in pain treatment.
        J Law Med Ethics. 2001; 29: 52-68
        • Burns N.K.
        • Gove S.K.
        Qualitative research issues.
        in: The Practice of Nursing Research: Appraisal, Synthesis, and Generation of Evidence. Saunders Elsevier, St. Louis, MO2009: 543-546
        • Campbell L.C.
        • Clauw D.J.
        • Keefe F.J.
        Persistent pain and depression: A biopsychosocial perspective.
        Biol Psychiatry. 2003; 54: 399-409
        • Campbell L.C.
        • Andrews N.
        • Scipio C.
        • Flores B.D.
        • Feliu M.
        • Keefe F.J.
        Pain coping in Latino populations.
        J Pain. 2009; 10: 1012-1019
        • Campbell L.C.
        • Warner T.D.
        Accessibility of health care.
        in: Jackson Y. Encyclopedia of Multicultural Psychology. Sage Publications, Thousand Oaks, CA2006: 3-5
        • Cella D.
        • Gershon R.
        • Lai J.S.
        • Choi S.
        The future of outcomes measurement: Item banking, tailored short-forms, and computerized adaptive assessment.
        Qual Life Res. 2007; 16: 133-141
      4. Center for Practical Bioethics. Pain Action Initative: A National Strategy (PAINS). Available at: http://www.practicalbioethics.org/. Accessed March 11, 2011

        • Cintron A.
        • Morrison R.S.
        Pain and ethnicity in the United States: A systematic review.
        J Palliat Med. 2006; 9: 1454-1473
        • Cleeland C.S.
        • Nakamura Y.
        • Mendoza T.R.
        • Edwards K.R.
        • Douglas J.
        • Serlin R.C.
        Dimensions of the impact of cancer pain in a four country sample: New information from multidimensional scaling.
        Pain. 1996; 67: 267-273
        • Corbie-Smith G.
        • Thomas S.B.
        • St George D.M.
        Distrust, race, and research.
        Arch Int Med. 2002; 162: 2458-2463
      5. Council for International Organisations of Medical Sciences: 2002 International Ethical Guidelines for Biomedical Research Involving Human Subjects. Available at: http://www.cioms.ch/. Accessed February 6, 2009

        • Dworkin R.H.
        • Turk D.C.
        • Farrar J.T.
        • Haythornthwaite J.A.
        • Jensen M.P.
        • Katz N.
        • Kerns R.K.
        • Stucki G.
        • Allen R.R.
        Core outcome measures for chronic pain clinical trials: IMMPACT recommendations.
        Pain. 2005; 113: 9-19
        • Ehni H.J.
        • Wiesing U.
        International ethical regulations on placebo-use in clinical trials: A comparative analysis.
        Bioethics. 2008; 22: 64-74
        • Ezenwa M.O.
        • Ameringer S.
        • Ward S.E.
        • Serlin R.C.
        Racial and ethnic disparities in pain management in the United States.
        J Nurs Scholarsh. 2006; 38: 225-233
        • Flor H.
        • Turk D.C.
        • Scholz O.B.
        Impact of chronic pain on the spouse: Marital, emotional and physical consequences.
        J Psychosom Res. 1987; 31: 63-71
        • Flor H.
        • Turk D.C.
        • Rudy T.E.
        Relationship of pain impact and significant other reinforcement of pain behaviors: The mediating role of gender, marital status and marital satisfaction.
        Pain. 1989; 9: 38-45
        • Flory J.
        • Emanual E.
        Interventions to improve research participants’ understanding in informed consent for research: A systematic review.
        JAMA. 2004; 292: 1593-1601
        • Gagliese L.
        • Gauthier L.R.
        • Rodin G.
        Cancer pain and depression: A systematic review of age-related patterns.
        Pain Res Manag. 2007; 12: 205-211
        • Goodman M.S.
        • Dias J.J.
        • Stafford J.D.
        Increasing research literacy in minority communities: CARES fellows training program.
        J Empir Res Hum Res Ethics. 2010; 5: 33-41
        • Green C.R.
        • Anderson K.O.
        • Baker T.A.
        • Campbell L.C.
        • Decker S.
        • Fillingim R.B.
        • Kalauokalani D.A.
        • Lasch K.E.
        • Myers C.
        • Tait R.C.
        • Todd K.H.
        • Vallerand A.H.
        The unequal burden of pain: Confronting racial and ethnic disparities in pain.
        Pain Med. 2003; 4: 277-294
        • Giuliano A.R.
        • Mokusu N.
        • Hughes C.
        • Tortolero-Luna G.
        • Risendal B.
        • Ho R.C.S.
        • Prewitt T.E.
        • McCaskill-Stevens W.J.
        Participation of minorities in cancer research: The influence of structural, cultural, and linguistic factors.
        Ann Epidemiol. 2000; 10: S22-S34
        • Hastie B.A.
        • Riley J.L.
        • Fillingim R.B.
        Ethnic differences in pain coping: Factor structure of the coping strategies questionnaire and coping strategies questionnaire-revised.
        J Pain. 2004; 5: 304-316
        • Huang D.T.
        • Hadian M.
        Bench-to-bedside review: Human subjects research – are more standards needed?.
        Crit Car. 2006; 10: 244-249
        • Hulme P.A.
        Cultural considerations in evidence-based practice.
        J Transcult Nurs. 2010; 21: 271-280
      6. International Association for the Study of Pain: Task Force on Guidelines for Desirable Characteristics for Pain Treatment Facilities. Available at: http://www.iasp-pain.org/desirabl.html. Accessed March 27, 2011

      7. Institute for Clinical Systems Improvement: Assessment and Management of Chronic Pain.
        Institute for Clinical Systems Improvement, Bloomington, MN2008
      8. Institute of Medicine: Relieving Pain in America: A Blueprint for Transforming Prevention, Care, Education, and Research.
        The National Academies Press, Washington, DC2011
        • Jones J.H.
        Bad Blood. The Tuskeegee Syphilis Experiment.
        Free Press, New York, NY1993
        • Kripilani S.
        • Bengtzen R.
        • Henderson L.E.
        • Jacobsen T.A.
        Clinical research in low-literacy populations: Using teach-back to assess comprehension in informed consent and privacy information.
        IRB. 2008; 30: 13-19
        • LaVeist T.A.
        • Gaskin D.J.
        • Richard P.
        The Economic Burden of Health Inequalities in the United States.
        Report of the Joint Center for Political and Economic Studies, Washington, DC2009
        • Lippe P.M.
        The decade of pain control and research.
        Pain Med. 2000; 1: 286
        • Llorente M.D.
        • Burke M.
        • Gregory G.R.
        • Bosworth H.B.
        • Grambow S.C.
        • Horner R.D.
        • Golden A.
        • Olsen E.J.
        Prostate cancer: A significant risk factor for late-life suicide.
        Am J Geriatr Psychiatry. 2005; 13: 195-201
        • Lin S.
        • Kelsey J.L.
        Use of race and ethnicity in epidemiological research: Concepts, methodological issues and suggestions for research.
        Epidemiol Rev. 2000; 22: 187-202
        • Lynch M.E.
        • Campbell F.
        • Clark A.J.
        • Dunbar M.J.
        • Goldstein D.
        • Peng P.
        • Stinson J.
        • Tupper H.
        A systematic review of the effect of waiting for treatment of chronic pain.
        Pain. 2008; 136: 97-116
        • Marquez M.A.
        • Muhs J.M.
        • Tosomeen A.
        • Riggs B.L.
        • Melton L.J.
        Costs & strategies for minority recruitment for osteoporosis research.
        J Bone Miner Res. 2003; 18: 3-8
        • Meghani S.H.
        Corporatization of Pain Medicine: Implications for Widening Pain Care Disparities.
        Pain Med. 2011; 12: 634-644
        • Meghani S.H.
        • Polomano R.C.
        • Tait R.C.
        • Vallerand A.H.
        • Anderson K.O.
        • Gallagher R.M.
        Advancing a National Agenda to Eliminate Disparities in Pain Care: Directions for Health Policy, Education, Practice, and Research.
        Pain Med. 2012; 13: 5-28
        • Melnyk B.M.
        • Fineout-Overholt E.
        Evidence-Based Practice in Nursing & Healthcare: A Guide to Best Practice.
        Lippincott Williams & Wilkins, Philadelphia, PA2005
        • Monsivais J.J.
        • Robinson K.
        Psychological profile and work status of a predominantly Hispanic worker’s compensation population with chronic limb pain.
        HAND. 2008; 3: 352-358
      9. National Institutes of Health: Available at: http://www.Nihpromis.org/measures/domainframework. Accessed November 30, 2011

        • Pain & Policy Studies Group
        Achieving Balance in State Pain Policy: A Progress Report Card.
        University of Wisconsin Paul P. Carbone Comprehensive Cancer Center, Madison, WI2008
        • Perlin J.B.
        • Kupersmith J.
        Information technology and the inferential gap.
        Health Aff. 2007; 26: w192-w194
        • Porreca F.
        • Ossipov M.H.
        • Gebhart G.F.
        Chronic pain and medullary descending facillitation.
        Trends Neurosci. 2002; 25: 319-325
        • Post L.F.
        • Blustein J.
        • Gordon E.
        • Dubler N.N.
        Pain: Ethics, culture and informed consent to relief.
        J Law Med Ethics. 1996; 24: 348-359
      10. Rakel D: Practical controlled trials: Researching the therapeutic ritual and all its parts. Bulletin. Available at: http://www.ampainsoc.org/pub/bulletin/fall06/research1.htm. Accessed March 9, 2011

        • Revicki D.A.
        • Chen W.H.
        • Harnam N.
        • Cook K.F.
        • Amtmann D.
        • Callahan L.F.
        • Jensen M.P.
        • Keefe F.J.
        Development and psychometric analysis of the PROMIS pain behavior item bank.
        Pain. 2009; 146: 158-169
        • Riley J.L.
        • Robinson M.E.
        • Geisser M.E.
        Empirical subgroups of the Coping Strategies Questionnaire-Revised: A multisample study.
        Clin J Pain. 1999; 15: 111-116
        • Sackett D.L.
        Evidence-based medicine.
        Semin Perinatol. 1997; 21: 3-5
        • Schatman M.E.
        The demise of the multidisciplinary chronic pain management clinic: Bioethical perspectives on providing optimal treatment when ethical principles collide. Ethical issues in chronic pain management.
        Informa Healthcare, New York, NY2007
        • Selgelid M.J.
        Module four: Standards of care and clinical trials.
        Dev World Bioeth. 2005; 5: 55-72
        • Shavers V.L.
        • Bakos A.
        • Sheppard V.B.
        Race, ethnicity, and pain among the U. S. adult population.
        J Health Care Poor Underserved. 2010; 21: 177-220
        • Stern A.M.
        Sterilized in the name of public health. Race, immigration, and reproductive control in modern California.
        Am J Pub Health. 2005; 95: 1128-1138
        • Sullivan M.J.L.
        • Bishop S.R.
        • Pivik J.
        The Pain Catastrophizing Scale: Development and validation.
        Psychol Assess. 1995; 7: 524-532
        • Trimble J.E.
        Ethnic specification, validation prospects and the future of drug abuse research.
        Int J Addict. 1990-1991; 25: 149-169
        • Turk D.C.
        • Dworkin R.H.
        • Allen R.R.
        • Bellamy N.
        • Brandenburge N.
        • Carr D.
        • Cleeland C.
        • Dionne R.
        Core outcome domains for chronic pain clinical trials: IMMPACT recommendations.
        Pain. 2003; 106: 337-345
        • Turk D.C.
        • Dworkin R.H.
        • Burke L.B.
        • Gershon R.
        • Rothman M.
        • Scott J.
        • Allen R.R.
        • Hampton Atkinson J.
        • Chandler J.
        • Cleeland C.
        Developing patient-reported outcome measures for pain clinical trials: IMMPACT recommendations.
        Pain. 2006; 125: 208-215
        • Viens A.M.
        Socio-economic status and inducement to participate.
        Am J Bioethics. 2001; 1: 1-2
        • Wendler D.
        • Kington R.
        • Madans J.
        • Van Wye G.
        • Christ-Schmidt H.
        • Pratt L.A.
        Are racial and ethnic minorities less willing to participate in health research?.
        PLOS Med. 2005 Dec 6; ([Epub ahead of print])
        • Wilbur J.
        • McDevitt J.
        • Wang E.
        • Dancy B.
        • Briller J.
        • Ingram D.
        • Nicola T.
        • Lee H.
        • Zenk S.N.
        Recruitment of African American women to a walking program: Eligibility, ineligibility, and attrition during screening.
        Res Nurs Health. 2006; 29: 176-189
        • Woolf S.H.
        The meaning of translational research and why it matters.
        JAMA. 2008; 299: 211-213
        • World Health Organization
        Cancer Pain Relief. With a Guide to Opioid Availability.
        WHO, Geneva1996