VI. Education
B. Patient and Family Education
This section includes educational kits and books, instructional
guides and videos and health information sheets on various
procedures.City of Hope Publications
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Borneman, T., Sun, V., Williams, A.C., Fujinami, R., Del Ferraro, C., Burhenn, P., Irish, T., Zachariah, F., van Zyl, C., Buga, S. (2015). Support for Patients and Family Caregivers in Lung Cancer: Educational Components of an Interdisciplinary Palliative Care Intervention. Journal of Hospice & Palliative Nursing, 17(4), 309-318.
doi: 10.1097/njh.0000000000000165
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Matzo, M., Graham, C., Troup, C. L., & Ferrell, B. (2014). Development
of a patient education resource for women with gynecologic
cancers: Cancer treatment and sexual health. Clinical
Journal of Oncology Nursing, 18(3), 343-348.
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Borneman, T.,
Koczywas, M., Sun, V., Piper, B., Smith-Idell, C., Laroya, B.,
Uman, G., & Ferrell, B. R. (2011). Effectiveness
of a clinical intervention to eliminate barriers to pain and
fatigue management in oncology. Journal
of Palliative Medicine, 14(2), 197-205. DOI: 10.1089/jpm.2010.0268.
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Evans, C., Chiou,
C., Fitzgerald, K., Evans, W., Ferrell, B. R., Dale, W., Fried,
l., Gandra, S., Denee-Sommers, B., & Patrick, D. (2011). Development
of a new patient-reported outcome measure in sarcopenia. Journal
of American Medical Directors Association, 12, 226-233.
DOI: 10.1016/j.jamda.2010.09.010.
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Borneman, T., Koczywas, M., Chih-Yi Sun, V.,
Piper, B. F., Uman, G., & Ferrell, B. R. (2010). Reducing
patient barriers to pain and
fatigue management. Journal
of Pain and Symptom Management, 39(3), 486.501.
DOI: 10.1016/j.jpainsymman.2009.08.007.
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O’Mara, A., Germain, D., Ferrell, B. R., & Borneman, T. (2009). Challenges
to and lessons learned from conducting palliative care research. Journal
of Pain and Symptom Management, 37(3),
387-394.
DOI: 10.1016/j.jpainsymman2008.03.014.
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Piper, B., Borneman, T., Sun, V., Koczywas. M.,
Uman, G., Ferrell, B. R., & James. R.
(2008). Cancer-related
fatigue (CRF): Role of oncology nurses in translating assessment
guidelines into practice. Clinical
Journal of Oncology Nursing, 12(5 Suppl), 37-47.
DOI: 10.1188/08.CJON.S2.37-47.
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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.
DOI: 10.1080/00981380802232396.
Recommended Publications
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Butcher, L. (2013). New
social media site for cancer patients. Oncology
Times, 35(18), 12.
DOI: 10.1097/01.COT.0000435398.65946.0b
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Handbook of Health Social Work, 2nd Edition
Gehlert, S. & Arthur Browne, T. (2011). NJ: John Wiley and Sons. ISBN #: 9780470643655.
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Everything Nobody Tells You About Cancer Treatment and Your Sex
Life from A to Z
University of Oklahoma College of Nursing. (2011).
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The
Merck Manual of Medical Information for Patients and Caregivers,
Second Home Edition Online Version
Beers, M. H. (2009). PA: Merck Publishing.
ISBN #: 0911910352.
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Family Carers in Palliative Care: A Guide for Health and Social
Care Professionals
Hudson, P. & Payne, S. (2009). NY: Oxford University Press. ISBN #: 0199216908.
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The Chronic Pain Solution: Your
Personal Path to Pain Relief (Kindle
Edition)
Dilliard, J. N., & Hirschman, L. A. (2008). CAN: Random House. ASIN #: B001NJUOEO.
Educational Materials/Curriculum
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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.
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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.
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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
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Cancer Pain: Your Guide to Relief -
HealthMark Multimedia
HealthMark Multimedia is a health-related, interactive solution for patients and healthcare organizations. It is used by patients in making treatment and self-care decisions, health care professionals for education purposes, and parents and children to learn about prevention and staying healthy.
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Coping with Cancer: Supportive and
Palliative Care -
National Cancer Institute (Spanish
version)
- About Children with Cancer
- Financial, Insurance, and Legal Information
- Finding Healthcare Services
- For Caregivers, Family, and Friends
- Managing Emotional Effects
- Managing Physical Effects
- Supportive and Palliative Care Clinical Trials
- Survivorship - Living With and Beyond Cancer
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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.
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End-of-Life: Helping with Comfort and
Care –
U.S. National Institutes of Health , National Institute on Aging
This booklet provides an overview of issues commonly facing people caring for someone nearing the end-of-life.
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Fact Sheets on Cancer Pain – International Association for the Study of Pain (IASP)
- Assessment of Cancer Pain
- Barriers to Cancer Pain Treatment
- Cancer Pain Treatment
- Partners and Caregivers of Cancer Patients Having Pain
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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
- Find Support and Treatment
- Health Insurance and Financial Assistance for the
Cancer Patient
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Guide to
Controlling Cancer Pain -
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.
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Health Facts for You - UW Health, University of Wisconsin
Hospital & Clinics, Madison, WI
- Constipation from Opioids (Naarcotics)
- Continuous Subcutaneous Lidocaine for Pain
Management
- Coping with Your Chronic Pain
- Fibromyalgia
- How to Relieve Pain without Medicine
- Intravenous Patient Controlled Analgesia
- Pain Management
-
Leukemia & Lymphoma Society Resource
Center
The latest information for patients, caregivers and healthcare professionals.
- Mesothelioma
- Lean on Me - Cancer Through a Carer's Eyes
- 100 Questions & Answers About Mesothelioma
- Mesothelioma Center Blog
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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.
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Pain -
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.
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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.
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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.
- 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
- Dyspnea (Difficult Breathing)
- Emotional Card
- Fatigue Card with Scale Spanish version
- Nausea and Vomiting Card Spanish version
- Nutritional Card Spanish version
- Pain Card
- Patient Knowledge Assessment Tool – Fatigue
- Patient Knowledge Assessment Tool – Pain
- Patient Spiritual Care Card
- Sleep Card Spanish version
- Spirituality Card
- Available Resources at City of Hope Spanish
version
- NCCN Guideline for Supportive Care
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Patient Assistance and Reimbursement Guide –
The Association of Community Cancer Centers
This latest edition brings together information on pharmaceutical and non-pharmaceutical patient assistance programs (PAPs) and reimbursement resources.
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Patient Bill of Rights - American
Cancer Society
A summary of the Consumer Bill of Rights and Responsibilities that was adopted by the US Advisory Commission on Consumer Protection and Quality in the Health Care Industry in 1998.
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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.
- Pain: You Can Get Help - National Institute of Health - The booklet is written to increase patient awareness
of the importance of treating pain.
- Guide to Controlling Cancer Pain - 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.
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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.
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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.
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Patient Support and Treatment
- American Cancer Society
Helps guide, support and inform patients through every step of their journey..
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Patient Resource Cancer Guide to Treatment-Related Side Effects – Patient
Resource LLC
Available free to patients and treatment facilities.
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R.A. Bloch Cancer Foundation & Block
Cancer Hotline
There are over 300 up to date cancer support organizations listed supporting specific types of cancer, organizations offering financial aid, blogs, a cancer checklist, patient matching services, meditation, transportation and more.
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The Cancer Nutrition Handbook –
Cancer Nutrition Center
The online booklet details nutrition and cancer guidelines, including nutrition during treatment and suggestions for eating to provide maximum immunity.
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The Handbook for People with Pain, 4th
Edition – In the Face of Pain
A 70 page resource guide that provides the patient or caregiver with help to face the challenges encountered by those who suffer from pain.
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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
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Treatment Guidelines for Patients™ by Cancer Site – National Comprehensive Cancer Network (NCCN)
An educational tool for patients and oncology professionals. Guidelines include breast cancer, chronic myelogenous leukemia, melanoma, malignant pleural mesothelioma, multiple myeloma, non-small cell lung cancer, ovarian cancer and prostate cancer.
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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.
Guidelines/Clinical Pathways
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Treatment Guidelines - American Cancer Society (ACS)
- Advanced Cancer
- Guide to Controlling Cancer Pain
- Physical Side Effects
Other Organizational Links
Position Statements/Standards
