Download the “Age & Pain” Fact Sheet

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Pain in Older Persons

The American Geriatrics Society (AGS) hosts a “Health in Aging Advocacy Center” on its website: http://capwiz.com/geriatrics/home/. AGS has also developed positions on health care reform, workforce issues, quality & patient safety and research, to name a few. These are accessible through the “Public Policy & Advocacy” section of the AGS website.

The National Institute on Aging offers a number of fact sheets on topics related to pain such as arthritis, shingles and caregiving. Many of these publications are also available in Spanish, can be downloaded for free, and provide a reliable, current source of information for community events, media and legislative advocacy:  http://www.niapublications.org/shopdisplayproducts.asp?cat=All

The International Association of the Study of Pain designated the focus of their 2006-2007 campaign as “Pain in Older Persons.” The Global Year Against Pain is an annual event to raise awareness of different timely aspects of pain. During the year, IASP members, chapters and other health care professionals organized various presentations and events with the aim to improve and understand mechanisms of pain in older persons, to improve pain relief in older persons and to distribute information about pain in the elderly. Click here to find more information and tools.

Administration on Aging (AoA): A Toolkit for Serving Diverse Communities. This Toolkit provides the AoA’s Aging Network and its partners with a replicable and easy-to-use method for providing respectful, inclusive, and sensitive services for any diverse community. The Toolkit consists of a four-step process and a questionnaire that assists professionals, volunteers and grassroots advocates with every stage of program planning, implementation and service delivery for older adult communities, their families and caregivers. The core principles of the toolkit include respect, inclusion and sensitivity as the hallmarks of quality service. This Toolkit is an invitation to make a cultural shift in service provision, to learn, to grow and fully appreciate the diverse community of older adults that agencies and their partners serve. Click here to view the toolkit and learn more.

The AoA has also published a series of fact sheets on African Americans, Hispanics, Asian Americans, American Indian/Native Alaskan Elderly that can be downloaded here from their newsroom and used for population-specific pain advocacy efforts.

Purdue Pharma’s Pain PACT is a collection of print and presentation resources developed to assist health care professionals who provide education for staff in the long-term care setting. The program offers an innovative education strategy designed to increase awareness and aid staff in caring for residents with pain, incorporates principles of adult education and learning to enhance retention and assimilation of information, and is designed to minimize preparation time while maximizing education time and outcomes. Health care professionals can access these tools by visiting the Medical Education Resource Catalog Online at: www.PurduePharmaMedEdResources.com.

Pain in Children

The Emergency Medical Services for Children Program offers a toolbox for pediatric pain assessment and management that includes resources for health care providers and families. Click here for more information.

The website Pain-Topics.org provides access to current research surrounding pediatric pain in its section “Pain Treatment in Pediatrics.”  The site offers clinical guidelines, systematic reviews and position/policy statements. Advocates can also sign up for e-notifications to be alerted when the section is updated. http://pain-topics.org/pain-disorders/pediatrics.php

The American Society for Pain Management Nursing (ASPMN) has developed a position statement on Neonatal Circumcision Pain Relief. ASPMN believes that neonates who are being circumcised should receive anesthetic for the procedure. Click here to view the full statement online.

The American Pain Society has published a position statement on children and pain that can be used to support advocacy efforts. Click here to view.

The International Association for the Study of Pain (IASP) declared 2005-2006 as the year of “Pain in Children.”  IASP Chapters and individuals involved in pain research and treatment are events in their communities to focus attention on this facet of pain, with the ultimate objective this year of improving pain relief in children throughout the world. Click here for information to help facilitate contact with local IASP chapter, the media, clinics or hospitals with the goal of educating health care professionals and communities about the importance of relieving childhood pain.

The IASP has also developed a fact sheet about pain and gender differences in children as a part of the 2007-2008 “Real Women, Real Pain” campaign. Click here to view this fact sheet.

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Download the “End-of-Life Pain& Palliative Care” Fact Sheet

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The National Hospice and Palliative Care Organization provides an overview of Hospice Advocacy in its “Advocacy Tools” section, along with tip sheets, template materials, reports and fact sheets. You can also find current information on legislation related to hospice and palliative care.

The End-of-Life Nursing Education Consortium (ELNEC) project is a national education initiative to improve palliative care. The project provides undergraduate and graduate nursing faculty, CE providers, staff development educators, specialty nurses in pediatrics, oncology, critical care and geriatrics, and other nurses with training in palliative care so they can teach this essential information to nursing students and practicing nurses. The project, which began in February 2000, was initially funded by a major grant from The Robert Wood Johnson Foundation (RWJF). Additional funding has been received from the Open Society and National Cancer Institutes (NCI), the Aetna, Archstone, Oncology Nursing, and California HealthCare Foundations, and the Department of Veteran Affairs (VA).

The International Association for Hospice & Palliative Care website has a section “Hospice Palliative Care Resources – Policy and Advocacy Tools.” The page provides links to hospice resources from around the world.

The Institute of Medicine has made three reports on hospice and end-of-life care available for download on their website:

• Describing Death in America: What We Need to Know (Released April 7, 2003)
• When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families (Released July 25, 2002)
• Approaching Death: Improving Care at the End-of-Life (Released December 1, 1998)

In 2005, Last Acts—a highly acclaimed Robert Wood Johnson Foundation national program—came to a close. The program’s website, www.lastacts.org, ceased publication at the same time. Last Acts created a wealth of useful Web content—for health care consumers, health-care practitioners, policy-makers and employers. Among their publications include:

• State Initiatives in End-of-Life Care, Focus: Pain Management – An Update, May 2002
• Their newsroom includes 24 issues of the newsletter “State Initiatives to Improve End-of-Life Care,” that address state policy issues in end-of-life care. Many of these provide useful information for pain management advocacy.
• Lastly, in their 2002 report, “Means to a Better End: A Report on Dying in America,” the organization graded states based on indicators including Pain Among Nursing Home Residents, State Pain Policies and Palliative Care-Certified Physicians and Nurses.

The AARP’s “End-of-Life” section of their caregiving program includes a tip sheet on questions to ask about end-of-life pain care.

The National Institutes of Health National Institute of Aging has convened a working group called “Palliative Care, End-of-Life Care, and Pain Relief.” Updated reports from this group that focus on research can be accessed through the organization’s website.

Purdue Pharma’s Pain PACT is a collection of print and presentation resources developed to assist health care professionals who provide education for staff in the long-term care setting. The program offers an innovative education strategy designed to increase awareness and aid staff in caring for residents with pain, incorporates principles of adult education and learning to enhance retention and assimilation of information, and is designed to minimize preparation time while maximizing education time and outcomes. Health care professionals can access these tools by visiting the Medical Education Resource Catalog Online.

Pain management and palliative care are a focus of the American Cancer Society Cancer Action Network. This arm of the American Cancer Society provides opportunities to volunteer and advocate for better cancer care and better pain care.

C-Change is comprised of the nation’s key cancer leaders from government, business, and nonprofit sectors. The organization recently added a new module to their web-based Cancer Core Competency toolkit, providing methods, tools, and insights for strengthening the cancer knowledge and skills for non-oncology health professionals focused on pain and palliative care.

The Lance Armstrong Foundation – LIVESTRONG offers comprehensive information on their website surrounding cancer pain, including a questionnaire and patient navigation resources. Click here to visit the website for more information.

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Download the “Gender & Pain” Fact Sheet

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The Chronic Pain Research Alliance (CPRA), formerly the Overlapping Conditions Alliance, is dedicated to alleviating the significant human suffering caused by prevalent, neglected and poorly understood chronic pain conditions that frequently co-occur and disproportionately affect women, by advocating for, and supporting, innovative collaborative scientific research on these disorders. These conditions include vulvodynia, temporomandibular disorders, endometriosis, fibromyalgia, interstitial cystitis/painful bladder syndrome, irritable bowel syndrome, chronic headache and chronic fatigue syndrome.

CPRA is comprised of the Endometriosis Association, the TMJ Association, Chronic Fatigue and Immune Dysfunction Association (CFIDS) Association of America, and the National Vulvodynia Association. The six conditions targeted by the Campaign to End Chronic Pain in Women – chronic fatigue syndrome, endometriosis, fibromyalgia, interstitial cystitis, temporomandibular disorders and vulvodynia – either solely affect women, or affect women at least four times more often than men.

• In May of 2010, the Alliance issued a report “Chronic Pain in Women: Neglect, Dismissal and Discrimination.” Detailed information about disease prevalence, research and disease burden can be found in this report, as well as policy recommendations to improve pain care for women.

The International Association of the Study of Pain (IASP) has launched the “Real Women, Real Pain” campaign to draw attention to the significant impact of chronic pain on women and the lack of attention to this global problem. This program is a part of the IASP’s recognition of October 2007-2008 as the Global Year Against Pain in Women. The objectives of the 2008 Global Year Against Pain are to:

• Increase awareness of pain conditions predominantly affecting women and help women and health care providers recognize signs and symptoms. Raise awareness of disparities between female/male pain issues. Empower women to become advocates for themselves and others, by encouraging them to affirm their pain is real and seek proper treatment. Increase female-specific research. Encourage the development of new female-specific treatment options.
• More information, including detailed fact sheets, visit the IASP website.

For Grace offers media and legislative advocacy tips, sample language and press materials through their Women in Pain section.

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Download the “Military/Veterans & Pain” Fact Sheet

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The Veterans Health Administration National Pain Management Strategy was initiated in 1998 and established pain management as a national priority. The overall objective of the national strategy is to develop a comprehensive, multicultural, integrated, system-wide approach to pain management that reduces pain and suffering for veterans experiencing acute and chronic pain associated with a wide range of illnesses, including terminal illness. As a part of fulfilling this strategy, the Veterans Administration (VA) has a dedicated “Pain Management” section on its website, designed to provide convenient, centralized access to resources for the provision of pain services within the VA health care system. The intended users of this site are Veterans, Veterans’ family members, caregivers, VA administrators, clinicians, and researchers who have an interest in any aspect of pain management. The site is designed to provide these groups of individuals with quick access to a range of relevant resources from both internal and external sources.

The VA also offers pain management resources for clinicians, including a chronic pain primer, pain assessment tools and more, which can be found on the organization’s website.

The American Pain Foundation is leading an advocacy effort to improve pain care for members of the military and veterans through its Military/Veteran Pain Initiative. Wounded Iraq-war veteran, Derek McGinnis worked with pain experts from the American Pain Foundation to write and release the book Exit Wounds: A Survival Guide to Pain Management for Returning Veterans and Their Families. The book and its companion website offer veterans and their families practical advice on pain management. The book also tells the inspiring story of how one man, with the support of his family and fellow veterans, “locked on” to a mission to survive and thrive despite being near death and facing a painful path to recovery. The book is available through the American Pain Foundation’s website.

The National Center for Veterans Analysis and Statistics provides age, gender, period of service and race information on a National, State, County and District level that can be used to support advocacy efforts. Click here to access the information online.

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Download the “Race & Pain” Fact Sheet

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The American Pain Society published “Racial and Ethnic Identifiers in Pain Management: The Importance to Research, Clinical Practice, and Public Health Policy,” a position statement that can be used to support pain advocacy efforts.

The Intercultural Cancer Council (ICC) has developed fact sheets on African-Americans and Cancer, American Indian/Alaska Natives and Cancer, Asian Americans and Cancer, Hispanics/Latinos and Cancer, Native Hawaiians/Pacific Islander and Cancer, and Cancer Pain.

The American Medical Association offers a number of health disparities advocacy tools, including those that deal with disparities in pain care. Click here for more information.

The National Institute of Neurological Disorders and Stroke (NINDS) has included “Health Disparities in Treatment and Management of Chronic Pain Disorders” as one of only 10 focus areas, with a stated goal to develop treatment and management strategies for chronic pain in diverse populations. As a part of this effort, the NINDS will focus on studies to identify racial/ethnic differences in pain perception and processing by addressing the incidence, severity, and consequences of pain in the general population, and in specific disease states. The Institute will also focus on studies to identify new diagnostic tools for different pain mechanisms, and objective measures of analgesic drug action. Key elements in this effort will be research to understand differences in response to analgesic drugs in diverse populations; encourage development of a quantitative sensory testing battery for pain patients; and imaging markers of analgesia and analgesic mechanisms.

The Department of Health and Human Services (DHHS) Office of Minority Health (OMH) developed National Standards for Culturally and Linguistically Appropriate Services (CLAS) in 2000. In 2007, as an outgrowth of the EDICT Project, the Chronic Disease Prevention and Control Research Center at Baylor College of Medicine received initial funding for the “CLAS AND Clinical Trials” (CLAS-ACT) Project from the Office of Minority Health, with additional support from the National Institutes of Health (NIH) National Center for Minority Health and Health Disparities and the DHHS Office on Women’s Health (Cooperative Agreement Number MPCMP051006-03).

The goal of CLAS-ACT is to increase the implementation of CLAS Standards in clinical trials. CLAS-ACT was designed to help researchers and research organizations implement CLAS standards consistently and systematically from participant recruitment through all study phases. More information can be found at: http://www.bcm.edu/edict/clas-act/

Congress, in 1999, requested an Institute of Medicine study to assess the extent of disparities in the types and quality of health services received by U.S. racial and ethnic minorities and non-minorities; explore factors that may contribute to inequities in care; and recommend policies and practices to eliminate these inequities. The report from that study, “Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care” (March 20, 2002) found that a consistent body of research demonstrates significant variation in the rates of medical procedures by race, even when insurance status, income, age, and severity of conditions are comparable. This research indicates that U.S. racial and ethnic minorities are less likely to receive even routine medical procedures and experience a lower quality of health services. The committee’s recommendations for reducing racial and ethnic disparities in health care include increasing awareness about disparities among the general public, health care providers, insurance companies, and policy-makers. Briefs from this report can be downloaded from the Institute of Medicine website.

The Administration on Aging (AoA) has published a series of fact sheets for elderly African Americans, Asian Americans, Native Americans/Alaskan Native and Hispanic Americans. These “snapshots” can be downloaded through the AoA’s press room.

The AoA also offers Native American Caregiver Support Services grants to assist American Indian, Alaskan Native and Native Hawaiian families caring for older relatives with chronic illness or disability and grandparents caring for grandchildren. The program offers a variety of services that meet a range of caregivers’ needs, including information and outreach, access assistance, individual counseling, support groups and training, respite care, and other supplemental services.

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Download the “Rural Poor/Medically Underserved & Pain” Fact Sheet

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In 2008, the American Chronic Pain Association joined the AgrAbility Project to bring information about chronic pain and its management to farmers and ranchers in rural communities across the country. Click here for more information.

Agency for Healthcare Research and Quality (AHRQ) State Snapshots. This interactive Web-based tool, produced by AHRQ annually using data from the National Healthcare Quality Report (NHQR) and National Healthcare Disparities Report (NHDR), is designed to help State officials and their public- and private-sector partners understand health care quality and disparities in their state, including strengths, weaknesses, and opportunities for improvements. The “State Snapshots” provide State-specific information on health care quality measures for areas that include preventive care, acute care, and care of chronic conditions, which may be particularly applicable to pain-related advocacy.

The Intercultural Cancer Council (ICC) has developed fact sheets Rural Poor/Medically Underserved and Cancer and Cancer Pain that can be used for targeted pain advocacy efforts.

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Download the “Pain in the Workplace” Fact Sheet

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You may also be interested in the Fact Sheet for Cost of Pain, which can be found here.

The American Chronic Pain Association released a publication “Pain in the Workplace” that covers challenges of working with pain, work-life balance, and worksite disabilities.

The American Pain Foundation also recently launched a “Low-Back Pain” spotlight that includes information about pain and the workplace, tips for managing pain, prevention, and handouts that can be used for pain advocacy efforts.

The Bureau of Labor Statistics website contains a wealth of current statistics on injury rate by industry and state. State reports of musculoskeletal injury can be found on the organization’s website.

The Workers’ Compensation Administrators Directory lists Workers’ Compensation home page links for all 50 states and the District of Columbia.

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