City of Hope Pain & Palliative Care Resource Center

V.   Education
       B.  Patient/Family Education

This section includes educational kits and books, instructional guides and videos and health information sheets on various procedures.

       City of Hope Publications

1.      O’Mara, A., Germain, D., Ferrell, B. R., & Borneman, T. (2008). Challenges to and lessons learned from conducting palliative care research. Journal of Pain and Symptom Management, In Press.

2.    Piper, B., Borneman, T., Sun, V., Koczywas. M., Uman, G., Ferrell, B. R., & James. R. (2008). Assessment of cancer-related fatigue (CRF): Role of oncology nurses in translating assessment guidelines into practice. Clinical Journal of Oncology Nursing, 12(5 Suppl), 37-47.

3.   Muñoz, C., Juarez, G., Muñoz, M. L., Portnow, J., Fineman, I., Badie, B., Mamelak, A., & Ferrell, B. R. (2008). The quality of life of patients with malignant gliomas and their caregivers. Social Work in Health Care, 47(4), 455-478.

4.    Ferrell, B. R. (2007). Reducing barriers to pain assessment and management: An institutional perspective. Journal of Palliative Medicine, 10(1S), S15-S18.

5.    Borneman, T., Piper, B., Sun, V., Koczywas, M., Uman, G., & Ferrell, B. R. (2007). Implementing the fatigue guidelines at one NCCN member institution: Process and outcomes. Journal of the National Comprehensive Cancer Network, 5(10), 1092-1101.

6.     Morris, M. E., Grant, M., Lynch, J. C. (2007). Patient-reported family distress among long-term cancer survivors’. Cancer Nursing, 30 (1), 1-8.

7.    Ferrell, B. R. (2006). Cancer pain: Helping patients help themselves.  NCI Cancer Bulletin, 3(33), 3 & 6.

8.     Borneman, T., Sun, V., Ferrell, B. R., Koczywas, M., Piper, B, & Uman, G. (2006). Educating patients about pain management.  Oncology Nurse Edition, 20(10), 41-49.

9.      Otis-Green, S. (2006). The transitions program: Existential care in action. Journal of Cancer Education. 21(1), 23-25. 

10.      Borneman, T., Chu, D., Wagman, L., Ferrell, B., Juarez, G., McCahill, L., & Uman. G. (2003). Concerns of family caregivers of patients with cancer facing palliative surgery for advanced malignancies.  Oncology Nursing Forum, 30(6), 997-1005.

11.      Borneman, T., Ferrell, B. R., McCahill, L. E., Juarez, G., & Chu, D. (2003). Family caregiver quality of life concerns: facing surgery for advanced malignancies.  Oncology Nursing Forum,. 32(6), 1143-1149.

12.      Ferrell, B. R., Melancon, C., Ervin, K., Smith, S., & Marek, T. (2002). Family perspectives of ovarian cancer. Cancer Practice, 10(6), 269-276. 

13.      Ferrell, B. R., & Juarez, G. (2002). Cancer pain education for patients and the public. Journal of Pain and Symptom Management 23(4), 329-336.

14.      Ferrell, B. R., & Rivera, L. M. (1997). Cancer pain education for patients.  Seminars in Oncology Nursing, 13(1), 42-48.

15.      Ferrell, B. R., Ferrell, B. A., Ahn, C., & Tran, K. (1994).  Pain management for elderly patients with cancer at home.  Cancer, 74, 2139-2146.      

16.    Ferrell, B. R., & Rhiner, M. (1994).  Managing cancer pain: A three-step approach.  Nursing 94, 24(7), 56-59.

17.    Ferrell, B. R.,  Rhiner, M., & Ferrell, B. A. (1993). Development and implementation of a pain education program. Cancer, 72, 3426-3432.

        Recommended Publications

1.      Family Carers in Palliative Care: A Guide for Health and Social Care Professionals
         -     Hudson, P. & Payne, S. (2009). NY: Oxford University Press.  ISBN #: 0199216908

2.     Handbook of Health Social Work
         -      Gehlert, S. & Arthur Browne, T. (2006). NJ: John Wiley and Sons. ISBN #: 0471714313.

3.      But You Look Good: A Guide to Understanding and Encouraging People Living with Chronic Illness & Pain
          -     The Invisible Disabilities Advocate. (2004). 

4.      The Chronic Pain Solution: Your Personal Path to Pain Relief
       -     Dilliard, J. N., & Hirschman, L. A. (2003).  CAN: Random House. ISBN #: 0553381113.

5.      The Merck Manual of Medical Information, Second Home Edition
          -     Beers, M. H. (2003).  PA: Merck Publishing.  ISBN #: 0911910352.

6.      The War on Pain
          -     Fishman, S., & Berger, L. (2001).  NY: Harper Collins Publishers. ISBN #: 0060930780.

7.      Be Prepared: The Complete Financial, Legal, and Practical Guide to Living with Cancer, HIV, and other Life-Challenging Conditions
          -       Landay, D. (2000).  NY: St. Martin's Griffin. ISBN #: 0312253745.    

8.      Cancer Doesn't Have to Hurt: How to Conquer the Pain Caused by Cancer & Cancer Treatment  
          -     Haylock, P. J., &  Curtiss, C. P. (1997).  CA: Hunter House Publishers. ISBN #: 0897932137.

9.      Living With Chronic Pain One Day at a Time 
          -     Zabawa, M. A. (1994).  MN: Freedom Enterprises.  ISBN #: 0963735306.
    
 

         Educational Materials/Curriculum

1.      A Helping Handbook: When a Loved One is Critically Ill - Stephanie Waxman
         -    This 48 page Helping Handbook is a safe place to put private thoughts, to be inspired by poetry, to be reminded that we are not the first ones to encounter conflicting feelings at a time of illness.     

2.     Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs
        -     Psychosocial health care addresses the emotional challenges that can accompany a serious illness as well as the life challenges that can prevent good healthcare and patient's ability to take care of themselves.  Read the book online, free.

3.     Cancer Pain Education for Patients and the Public (CPEPP)
         -     City of Hope investigators (Betty Ferrell, Marcia Grant, and Gloria Juarez) conducted an education project funded by the National Cancer Institute to address the multiple opportunities for cancer pain education and to provide resources for successful implementation.  The project materials include outlines, Power Point presentations, handouts and a comprehensive bibliography for each module.  An article summarizing this project was published in the Journal of Pain and Symptom Management, 2002, 23(3), 7-8, which provides further detail regarding the training program.

         Module I - Pain Management for Individual Patient Education
                            Handouts, Outline, and Slides

         Module II - Cultural Considerations in Patient and Public Education
                              Handouts, Outline, and Slides

         Module III - Pain Education provided through group settings
                               Handouts, Outline, and Slides

         Module IV - Public Education for Pain Management
                               Handouts, Outline, and Slides

         Module V - Telephone Education
                              Handouts, Outline, and Slides

         Module VI - The JCAHO Imperative; Improved Pain Management
                               Handouts, Outline, and Slides

         Module VII - Professional Education as a Prerequisite to Patient Education; Involving Colleagues in Pain Education
                                 Handouts, Outline, and Slides

         Module VIII - Overcoming Institutional Barriers to Pain Education
                                  Handouts and Outline   

4.     Cancer Pain: Your Guide to Relief - HealthMark Multimedia
         -     This CD provides you with information to help you understand the pain management process, tools to help you assess and control your pain and personal stories of people who have learned to manage their pain. Complementary therapies and self care are discussed along with strategies for working with the health care system.

5.      Coping with Cancer - National Cancer Institute 
         -     Care for Children and Adolescents With Cancer: Questions and Answers 
         -     Controlling Cancer Pain, A Video for Patients and Families
         -     Financial Assistance and Other Resources for People with Cancer
         -     National Organizations That Offer Services to People With Cancer and Their Families
         -     Pain Control: Support for People with Cancer          in Spanish
         -     El Dolor Relacionado con el Cancer  (Understanding Cancer Pain in Spanish)

6.      Easing Cancer Pain - Michigan State University 
         -    An interactive CD program designed to empower people with cancer who suffer from pain.  It provides a wealth of resources to help them understand their pain and seek effective treatment.

7.     Fact Sheets – International Association for the Study of Pain (IASP)
        -     Barriers to Cancer Pain Treatment
        -     Cancer Pain
        -     Cancer Pain Treatment
        -     Partners and Caregivers of Cancer Patients Having Pain            

8.      Financial Issues and Cancer - American Cancer Society
         -     Advanced Illness: Financial Guidance for Cancer Survivors and Their Families
         -     Coping Financially with the Loss of a Loved One: Financial Guidance for Families
         -     Costs of Cancer
         -     Health Insurance and Financial Assistance for the Cancer Patient 

9.      Health Facts for You Flyers - University of Wisconsin Hospital & Clinics, Madison, WI
          -     Constipation from Opioids 
          -     Coping with Chronic Pain
          -     FACES Pain Scale 
          -     Fibromyalgia   
          -     JAMA Pain Page
          -     Nondrug Strategies 
          -     Pain Management - What Everyone Should Know
          -     Patient Controlled Analgesia 
          -     Sexuality and Chronic Pain 
          -     Continuous Subcutaneous Lidocaine for Pain Management

10.    Managing Pain Begins with You
         -      This downloadable brochure is easy to read and understand pain for pain sufferers and health care providers and their practice settings.  It is also available in Spanish.

11.    Mesothelioma Causes
         Lean on Me - Cancer Through a Carer's Eyes
         100 Questions & Answers About Mesothelioma

12.    Pain Control: A Guide for People with Cancer & Their Families - American Cancer Society
         -    Learn about a variety of methods for pain control and discover how to achieve the optimal balance between pain  relief and potential side effects of pain medication.  This resource can help people with cancer partner with their health care teams to create effective pain-relief plans tailored to their unique situations.              

13.    Pain Control: Support for People with Cancer - National Cancer Institute
          -     Important facts about cancer pain treatment that will help you learn about pain control for people with cancer, including how to work with your doctors, nurses, and pharmacists to find the best method to control your pain.  

14.    Pain Control After Surgery -  Cleveland Clinic Health Information Center
         -     Types of pain control treatments including Patient-Controlled Epidural Analgesia, Patient-Controlled Intravenous Analgesia, NSAIDS, and narcotics.

15.    Pain Management - University of Michigan Health System
          -    A resource for patients, families and health care providers on pain management options.

16.    Pain Management Fact Sheet – The Leukemia & Lymphoma Society
         -     The latest information for patients, caregivers and healthcare professionals.              

17.    Pain Management: The 3 R's (Video) - Milner-Fenwick, Timonium, MD
         -     This video will help educate patients about pain management, which is now part of the JCAHO standards. It provides practical guidelines for developing a pain management plan and helps both the patient and caregiver establish realistic goals. Also available in Spanish.

18.    Pain Multimedia Library - StopPain.org
      -   Visit the Pain Multimedia Library for the latest information and treatment options for common pain syndromes.  These Flash presentations include CRPs, Low Back Pain, Migraine Headache, Shingles, and Sickle Cell Pain.  Available in Spanish and Russian.  

19.     Pain Resource Guide: Getting the Help You Need - American Pain Foundation
          -    A pain resource guide designed to encourage you to take charge of your pain. It provides important information about pain and tips to
                assist you in getting the quality pain care you deserve.

20.    Patient Education 
         -     Poetry of Pain - The poems explore the frustration, fear, anger, depression, acknowledgement and hope that Linda Martinson experienced as a person dealing with chronic pain.  
         -     Get Relief from Cancer Pain - National Institute of Health - The booklet is written to increase patient awareness of the importance of treating cancer pain. 
         -     Breakthrough Cancer Pain: Questions and Answers - American Cancer Society
         -     Pain Control: A Guide for People with Cancer and Their Families - American Cancer Society
         -     Relieving Cancer Pain - Fred Hutchinson Cancer Research Center includes a video of cancer patients and clinicians discussing problems and solutions for managing cancer pain and a book which lists barriers to pain relief, things to tell your doctor and a treatment plan for recording medication information.

21.     Patient-Centered Communication in Cancer Care: Promoting Healing and Reducing Suffering
          -     This monograph lays the foundation for future innovative research in the area of patient-centered communication in oncology as well as other illness settings.  Highlights include: conceptualization of patient-centered communication into six key functions; emphasis on research that examines the relationship between patient-centered communication and patient health outcomes; detailed discussion of potential mediating and moderating mechanisms of the association between communication and patient outcomes; and identification of specific research priorities that would guide NCI in planning future research initiatives in this important area.

22.   Patient Education Plan - Kaiser Permanente, Los Angeles, CA
          -     Developed by the Medical Care Program - Southern California region.  A checklist used for patient teaching and chart documentation.  Includes key content for pain education.

23.    Patient Handbook for Cancer Pain Management  - City of Hope, Duarte, CA
         Folleto sobre Como Tratar con el Dolor del Cancer para los Pacientes de City of Hope (Spanish version)
          -     Developed by the Supportive Care Committee at City of Hope, this book was developed to help patients care for their pain, or for caregivers to help a loved one in pain. This booklet teaches how to assess your pain and actively participate in its management.

24.    Patient Medication Information - Fox Chase Cancer Center, Philadelphia, PA 
         -     Patient handouts regarding eleven medications including: Dilaudid tablets, Fentanyl patch, MS Contin, Morphine concentrate, Morphine Sulfate tablets or capsules, Oxycodone plus Acetaminophen, Oxycontin, Choline Magnesium Trisalicylate, Ibuprofen, Desipramine, and Nortriptyline.

25.    Patient Resource Cancer Guide to Treatment-Related Side Effects – Patient Resource Publishing, MO
         -      Available free to patients and treatment facilities.

26.    Patient Rights and Responsibilities - Rockford Memorial Hospital, Rockford, IL
          -    This document describes the patient's rights and responsibilities to the commitment of excellence in pain management.    

27.    Passport to Comfort: Reducing Barriers to Pain & Fatigue Management – City of Hope, Duarte, CA
         -    This model addresses patient, professional and system barriers to the relief of pain and fatigue and is based on established guidelines developed by the National Comprehensive Cancer Network (NCCN).  An NCI supported program. Most available in English and Spanish.
                -          Passport to Comfort – Pain Management &Fatigue Management    Spanish version
                -          Pain: Key Teaching Points, Assessment and Management       Spanish version
                -          Fatigue: Key Points, Assessment       Spanish version
                -          Fatigue: Key Points, Management     Spanish version
                -          Tip Sheet – Energy Conservation and Exercise     Spanish version
                -          Tip Sheet – Strategies to Help Promote Improved Sleep     Spanish version
                -          Tip Sheet – Nutrition Guidelines for Fatigue     Spanish version
                -          Tip Sheet – Preventing and Managing Constipation      Spanish version
                -          Tip Sheet – Coping with Emotional and Social Impact of Pain and Fatigue     Spanish version
                -          Constipation Card    
                -          Emotional Card
                -          Fatigue Card with Scale   Spanish version
                -          Nausea and Vomiting Card    Spanish version
                -          Nutritional Card    Spanish version           
                -          Pain Card
                -          Patient Spiritual Care Card
                 -         Sleep Card     Spanish version
                -          Spirituality Card  
                -          Available Resources at City of Hope    Spanish version
                -          NCCN Guideline for Supportive Care
          -          Passport to Comfort Newsletter

28.    The Resource Center of the Alliance of  State Pain Initiatives 
          -    Cancer Pain Can Be Relieved, 2nd Edition 
          -    Children's Cancer Pain Can Be Relieved
          -    Eight Facts Everyone Should Know About Cancer Pain
    
29.    Understanding and Managing Pain: Information for Patients - The British Pain Society, London, UK
          -    This online booklet explores how to form a partnership between the patient and the health professionals working with them and how to get the best pain relief out of this partnership.

30.    The Wellness Community Nutrition Handbook – The Wellness Community, Washington, DC
          -     This online booklet details nutrition and cancer guidelines, including nutrition during treatment and suggestions for eating to provide maximum immunity.    
              

         Guidelines/Clinical Pathways

1.      Treatment Guidelines - National Comprehensive Cancer Network (NCCN) and American Cancer Society (ACS)
         The National Comprehensive Cancer Network and the American Cancer Society have teamed up to provide patients and the general public the most current information about treatment options. The guidelines include information on early detection and evaluation of cancer, staging, and side effects of various treatments.
         -     Advanced Cancer and Palliative Care Treatment Guidelines for Patients
         -     Cancer Pain: Treatment Guidelines for Patients - (PDF Version)
         -     Cancer Treatment Options
 

         Other Organizational Links

           Position Statements/Standards

1.      Hospice and Palliative Nurses Associates (HPNA) Position Statement
            -        Spiritual Care