City of Hope Pain & Palliative Care Resource Center

I.   Quality of Life and Cancer Survivorship

This section includes City of Hope publications and figures of the City of Hope Quality of Life conceptual model.  The section also includes City of Hope publications related to Quality of Life in specific populations
of ovarian cancer, breast cancer, cancer survivors, Hematopoietic Cell Transplantation (Bone Marrow Transplant), and patients with Ostomies.

For more information on measurement tools for Quality of Life, refer to VIII. Research Instruments.

      City of Hope Publications

1.     Quality-of-Life Models - all of the models include a list of references (also see the models in the sections below regarding Breast Cancer, Cancer Survivorship, Hematopoietic Cell Transplantation (Bone Marrow Transplant), Ostomy, Cancer Survivorship and Ovarian Cancer).
        -       Quality of Life - Fatigue
        -       Quality of Life - Family Caregiver
        -       Quality of Life Hematopoietic Cell Transplant (Bone Marrow Transplant)
        -       Quality of Life - Pain  
        -       Quality of Life Cancer Survivor Model        

2.     City of Hope publications related to Quality of Life and Breast Cancer   ($3.00 each item)
        (The Quality of Life Breast Cancer Instrument can also be found under  VIII. Research Instruments)               
        a)     Quality of Life Breast Cancer Model
        b)     MacDonald, D. J., Sarna, L., Uman, G. C., Grant, M., & Weitzel, J. N. (2006). Cancer screening and risk reducing behaviors of women seeking genetic cancer risk assessment for breast and ovarian cancers. Oncology Nursing Forum. 33, (2), E27-E35.
        c)      Ferrell, B. R., Grant, M., Funk, B., Otis-Green, S., Garcia, N.  (1998). Quality of life in breast cancer survivors: Implications for developing support services.  Oncology Nursing Forum, 25(5), 887-895.            
        d)      Ferrell, B. R., Grant, M., Funk, B., Otis-Green, S., & Garcia, N.  (1998). Quality of life in breast cancer Part II: Psychological and spiritual well-being.  Cancer Nursing, 21(1), 1-9.
        e)      Ferrell, B. R., Grant, M., Funk, B., Otis-Green, S., & Garcia, N. (1997). Quality of life in breast cancer Part I: Physical and social well-being.   Cancer Nursing, 20(6), 398-408.
        f)       Ferrell, B. R., Grant, M., Funk, B., Otis-Green, S., & Garcia N.  (1997). Quality of life in breast cancer survivors as identified by focus groups. Psycho-Oncology, 6, 13-23.
        g)      Hassey-Dow, K., Ferrell, B. R., Leigh, S., Ly, J., & Gulasekram, P.  (1996). An evaluation of the quality of life among long-term survivors of breast cancer. Breast Cancer Research and Treatment, 39, 261-273.
        h)      Ferrell, B. R., Grant, M., Funk, B., Garcia, N., Otis-Green, S., & Schaffner, M. L. J.  (1996). Quality of life in breast cancer.  Cancer Practice, 4(6), 331-340.

3.     City of Hope publications related to Quality of Life and Cancer Survivorship  ($3.00 each item)
        (The Quality-of-Life Cancer Survivor Instrument can also be found under VIII. Research Instruments)               
         a)     Quality of Life Cancer Survivor Model    
         b)     Gemmill, R., Sun, V., Ferrell, B. R., Krouse, R. S., & Grant, M. (2010). Going with the flow: Quality-of-life outcomes of cancer survivors with urinary diversion. Wound, Ostomy and Continence Nurses Society, 37(1), 65-72.
       c)  Sun, V., Borneman, T., Piper, B., Koczywas, M., & Ferrell, B. R. (2008). Barriers to pain assessment and management in cancer  survivorship. Journal of Cancer Survivorship, 2(1), 65-72.
         d)     Grant, M., & Economou, D. (2008). The evolving paradigm of adult cancer survivor care. Oncology-Nurse Edition, 22(4), 13-28.
         e)     Grant, M., & Economou, D. (2007). Survivorship education for quality cancer care. Oncology Issues, 22(4), 24-29.
         f)     Grant, M., Economou, D., Ferrell, B. R., & Bhatia, S. (2007). Training healthcare professionals to meet cancer survivors’ needs. Oncology Nursing News. Nov/Dec 1(4).
         g)      Grant, M., Economou, D., Ferrell, B. R., & Bhatia, B. (2007). Preparing professional staff to care for cancer survivors.  Journal of Cancer Survivorship: Research and Practice, 1(1), 98-106.
         h)     Morris, M. E., Grant, M., & Lynch, J. C. (2007). Patient-reported family distress among long-term cancer survivors. Cancer Nursing. 30(1), 1-8.
         i)    Ferrell, B., Virani, R., Smith, S., & Juarez, G.  (2003). The role of oncology nursing to ensure quality care for cancer survivors: A report commissioned by the National Cancer Policy Board and Institute of Medicine.  Oncology Nursing Forum, 30(1), E1-E11.
         j)     Hassey-Dow, K., Ferrell, B., & Haberman, M.  (1999). The meaning of quality of life in cancer survivors.   Oncology Nursing Forum, 26(3), 519-529.
         k)     Ferrell, B. R., Hassey-Dow, K., Leigh, S., Ly, J., & Gulasekaram, P.  (1995). Quality of life in long-term cancer survivors.  Oncology Nursing Forum, 22(6), 915-922.
        l)     Ferrell, B. R., Dow, K. H., & Grant, M.  (1995). Measurement of the quality of life in cancer survivors.  Quality of Life Research, 4, 523-531. 

4.     City of Hope publications related to Quality of Life and Hematopoietic Cell Transportation (Bone Marrow Transplantation). 
        (The Quality of Life Hematopoietic Cell (Bone Marrow) Transplant Instrument can also be found under VIII. Research Instruments).
        a)     Quality of Life Hematopoietic Cell Transplant Model
       b)     Cooke, L., Grant, M., & Eldredge, D. (2006). Hematopoietic cell transplantation: The trajectory of quality of life.  Blood and Marrow Stem Cell Transplantation, 3, 391-421.
        c)    Bhatia, S., Robison, L. L., Francisco, L., Carter, A., Liu, Y., Grant, M., et al. (2005). Late mortality in survivors of autologous hematopoietic cell transplantation: Report for the bone marrow transplant survivor study. Blood, 105(11), 4215-4222.
        d)     Grant, M., Cooke, L., Bhatia, S., & Forman, S. (2005). Discharge and unscheduled readmissions of adult hematopoietic cell transplant. Patients: implications for developing nursing interventions.  Oncology Nursing Forum, 32(1), E1-E8.

 5.    City of Hope publications related to Quality of Life and Ostomy
        (The Quality of Life Ostomy Instrument can be found under VIII. Research Instruments).
        a)    Quality of Life Ostomy Model 
        b)    Quality of Life Ostomy Coding
        c)    Altschuler, A., Ramirez, M., Grant, M., Wendel, C., Hornbrook, M. C., Herrinton, L., & Krouse, R. S. (2009). The influence of husbands' or male partners' support on women's psychosocial adjustment to having an ostomy resulting from  colorectal cancer. Journal Wound Ostomy Continence Nurse, 36(3), 299-305.
        d)    Pittman, J., Rawl, S. M., Schmidt, C. M., Grant, M., Ko, C. Y., Wendel, C., & Krouse, R. S. (2008). Demographic and clinical factors related to ostomy complications and quality of life in veterans with an ostomy. Journal of Wound, Ostomy and Continence Nursing, 35(5), 493-503.
        e)    Baldwin, C.M., Grant, M., Wendel, C., Rawl, S., Schmidt, C. M., Ko, C., & Krouse, R. S. (2008). Influence of intestinal stoma on spiritual quality of life of U.S. veterans. Journal of Holistic Nursing, 26(3), 185-194.
        f)    McMullen, C. K., Hornbrook, M. C., Grant, M., Baldwin, C. M., Wendel, C. S., Mohler, M. J., Altschuler, A., Ramirez, M., & Krouse, R. (2008). The greatest challenges reported by long-term colorectal cancer survivors with stomas. The Journal of Supportive Oncology, 6(4), 175-182.
        g)    Jain, S., McGory, M., Ko, C., Sverdlik, A., Tomilinson, J., Wendel, C. S., et al. (2007). Comorbidities play a larger role in predicting quality of life compared to having an ostomy. American Journal of Surgery, 194(6), 774-779.
      h)    Mitchell, K. A., Rawl, S. M., Schmidt, C. M., Grant, M., Ko, C. Y., Baldwin, C. M., et al. (2007). Demographic, clinical and quality of life variables related to embarrassment in veterans living with an intestinal stoma. Ostomy and Continence Nursing, 34(5), 524-532.
        i)    Coons, S. J., Chongpison, Y., Wendel, C. S., Grant, M., & Krouse, R. (2007). Overall quality of life and difficulty paying for ostomy supplies in the Veterans affairs ostomy health-related quality of life study. Medical Care, 45(9), 891-895.
        j)    Krouse, R. S., Grant, M., Wendel, C. S., Mohler, M. J., Rawl, S. M., Baldwin, C. M., Coons, S. J., McCorlke, R., Ko, C. Y., & Schmidt, C. M.  (2007). A mixed-methods evaluation of health-related quality of life for male veterans with and without intestinal stomas. Diseases of the Colon and Rectum, 50(12), 2054-2066.
        k)    Krouse, R., S., Grant, M., Ferrell, B. R., Dean, G., Nelson, R., & Chu, D. (2007). Quality of life outcomes in 599 cancer and non-cancer patients with colostomies. Journal of Surgical Research, 138(1), 79-87.
        l)     Krouse, R. S., Mohler, M. J., Wendel, C. S., Grant, M., et al. (2006). The VA ostomy health-related quality of life study: Objectives, methods, and patient sample. Current Medical Research and Opinion, 22 (4), 781-791.
        m)   Grant, M., Ferrell, B. R., Dean, G., Uman, G., Chu, D., & Krouse, R. (2004). Revision and psychometric testing of the City of Hope Quality of Life Ostomy Questionnaire. Quality of Life Research, 13, 1445-1457.

6.     City of Hope publications related to Quality of Life and Ovarian Cancer  ($3.00 each item)
        (The Quality-of-Life Ovarian Cancer Instrument can also be found  under  VIII. Research Instruments)                 
        a)      Quality of Life Ovarian Cancer Model    
        b)     Otis-Green, S., Ferrell, B. R., Sun, V., Spolum, M., Morgan, R., & Macdonald, D. (2008). Feasibility of an ovarian cancer quality-of-life psychoeducational intervention. Journal of Cancer Education, 23, 214-221.
        c)     Crane-Okada, R., Washer, R. A, Elashoff, D. & Giuliano, A. E. (2008). Long-term morbidity of sentinel node biopsy versus complete axillary dissection for unilateral breast cancer. Annals of Surgical Oncology, 15, 1996-2005.    
        d)    MacDonald, D. J., Sarna, L., Uman, G. C., Grant, M., & Weitzel, J. N. (2006). Cancer screening and risk reducing behaviors of women seeking genetic cancer risk assessment for breast and ovarian cancers. Oncology Nursing Forum. 33, (2), E27-E35.
        e)      Ferrell, B. R., Cullinane, C. A., Ervin, K., Melancon, C., Uman, G. C., & Juarez, G. (2005). Perspectives on the impact of ovarian cancer: women’s views of quality of life. Oncology Nursing Forum, 32 (6), 1143-1149.
        f)      Ferrell, B., Smith, S., Cullinane, C., & Melancon, C.  (2003).  Psychological well being and quality of life in ovarian cancer survivors.  Cancer, 98(5), 1061-1071.
        g)     Ferrell, B. R., Smith, S. L., Cullinane, C. A., & Melancon, C. H.  (2003). Symptom concerns of women with ovarian cancer.  Journal of Pain and Symptom Management, 25(6), 528-538. 
        h)     Ferrell, B. R., Smith, S. L., Juarez, G., & Melancon, C. H.  (2003). Meaning of illness and spirituality in ovarian cancer survivors.  Oncology Nursing Forum, 30(2), 249-257.
        i)      Ferrell, B., Smith, S., Ervin, K., Itano, J., & Melancon, C.  (2003). A qualitative analysis of social concerns of women with ovarian cancer.  Psycho-Oncology, 12, 647-663.
        j)      Ferrell, B. R., Ervin, K., Smith, S., Marek, T., & Melancon, C. H. (2002). Family perspectives of ovarian cancer.  Cancer Practice, 10(6), 269-276.
       k)      Ersek, M., Ferrell, B. R., Dow, K. H., & Melancon, C. H.  (1997). Quality of life in women with ovarian cancer.   Western Journal of Nursing Research, 19, 334-350.

      
     Recommended Publications

1.      100 Questions & Answers About Life After Cancer: A Survivor’s Guide
         -     Tolbert, P. & Damaskos, P. (2008). MA: Jones and Bartlett Publishers. ISBN #: 0763750697.

2.      Handbook of Cancer Survivorship
         -     Feuerstin, M. (2007). NY: Springer Science & Business. ISBN #: 0387345612.

3.      Cancer Survivorship – Today and Tomorrow
         -     Ganz, P. A. (2007). NY: Springer Science & Business. ISBN #: 387343490.

4.      Implementing Cancer Survivorship Care Planning
         -      A National Coalition for Cancer Survivorship and Institute of Medicine National Cancer Policy Forum Workshop,
                The Lance Armstrong Foundation, The Nation Cancer Institute, Hewitt, M. & Ganz, P. A. (2007).  
                DC: The National Academies Press.  ISBN #: 309095956.

5.      A Guide to Survivorship for Women with Ovarian Cancer
         -     Montz, F. J, Bristow, R. E., & Anastasia, P. J. (2007). MD: John Hopkins University Press.  ISBN #: 0801880912.

6.      Everyone’s Guide to Cancer Survivorship: A Road Map for Better Health
         -     Gautier, H. & Rosenbaum, E. H. (2007). NJ: Andrews McMeel Publishing.  ISBN #: 0740768700.

7.      The Cancer Survivor’s Guide – The Essential Handbook to Life after Cancer
         -      Feuerstein, M. & Findley, P. (2006).  NY: Marlowe & Company.  ISBN #: 569243328.

8.      Happiness in a Storm: Facing Illness and Embracing Life as a Healthy Survivor
         -     Harpham, W. S. (2005). NY: Norton & Company.  ISBN #: 393060802.

9.      You're Not Alone A Practical Guide for Maintaining Your Quality of Life While Living with Cancer
         -     Rosenbaum, E. H., Rosenbaum, I. R., & Anderson T. (2005). Online publication.

10.    From Cancer Patient to Cancer Survivor: Lost in Transition
         -     Hewitt, M., Greenfield, S., & Stoval, E. (2005). DC: The National Academies Press.  ISBN #: 309095956.

11.    Thomas’ Hematopoietic Cell Transplantation, 3^rd Edition
         -    Blume, K. G., Forman, S. J., & Appelbaum, F. (2004).  MA: Blackwell Publishers. ISBN #: 1405112565.

12.    Quality of Life: From Nursing and Patient Perspectives, 2nd Edition
         -     King, C. & Hinds, P. (2003). MA: Jones and Bartlett Publishers. ISBN #: 0763722359.  

13.    Childhood Cancer Survivorship: Improving Care and Quality of Life
         -     Hewitt, M., Weiner, S. L, & Simone, J. V. (2003). DC: The National Academies Press.  ISBN #:309088984.

14.    Quality of Life & Pharmacoeconomics: An Introduction
         -      Cramer, J. & Spilker, B. (1997). MD: Lippincott Williams & Wilkins. ISBN #: 0397518455.   

15.    Zebrack, B. (2009). Developing a new instrument to assess the impact of cancer in young adult survivors of childhood cancer. Journal of Cancer Survivorship, 3, Online.

16.     Ferrell, B. R., Paice, J., & Koczywas, M. (2008). New standards and implications for improving the quality of supportive oncology practice. American Society of Clinical Oncology, 26(23), 3824-3831.

17.     Crane-Okada, R. (2007). A compass for the cancer journey: Scientific, spiritual, and practical directives. Oncology Nursing Forum, 34(5), 945-954.

18.     Crane-Okada, R. (2007). A compass for the spiritual journey: scientific, spiritual, and practical directives. Oncology Nursing Forum, 34(5), 945-954.

19.     Haylock, P.J. (2006). The shifting paradigm of cancer care. American Journal of Nursing 106(3 supplement), 16-19.

20.     Rowland, J. H., Hewitt, M., & Ganz, P. A. (2006). Cancer survivorship: a new challenge in delivering quality cancer care. Journal of Clinical Oncology, 24(32), 5101-5104.

21.     Ganz, P. A. (2006). Monitoring the physical health of cancer survivors: a survivorship focused medical history. Journal of Clinical Oncology, 24(32), 5105-5111.

22.     Earle, C. C. (2006). Failing to plan is planning to fail: improving the quality of care with survivorship care plans. Journal of Clinical Oncology, 24(32), 5112-5116.

23.     Oeffinger, K. C. (2006). Models fro delivering survivorship care. Journal of Clinical Oncology, 24(32), 5117-5124.

24.     Landier, W., Wallace, W. H. B., & Hudson, M. M. (2006). Long term follow up of pediatric cancer survivors: education, surveillance, and screening. Pediatric Blood Cancer. 46(2), 149-158.

25.     Friedman, D. L., Freyer, D. R., & Levitt, G. A. (2006). Models of care for survivors of childhood cancers. Pediatric Blood Cancer, 46(2), 159-168.

    
     Educational Materials/Curriculum

1.      Cancer Survival Toolbox - National Coalition for Cancer Survivorship
       -   The Cancer Survival Toolbox is a free, self-learning audio program that has been developed by leading cancer organizations to help people develop important skills to better meet and understand the challenges of their illness.  You can read or listen to the Toolbox in English and Spanish or download the files to read or listen later. Chinese transcripts are also available. 

2.      Facing Forward – Life after Cancer Treatment – National Cancer Institute
       -   This booklet shares what the NCI has learned from cancer survivors about life after cancer including practical ways of dealing with common problems and guidelines for managing your physical, social, and emotional health. Also available in Spanish.

3.      Coping with Cancer - National Cancer Institute
         -   Includes sections on Fatigue, Pain, Complications/Side Effects, Nutritional Concerns, Emotional Concerns, Treatment Related Issues, Clinical Trials, Information for Caregivers and Loved Ones, Survivorship and End of Life Issues.

    
    Guidelines/Clinical Pathways

1.     Assess Progress, Advancing Change – US Department of Health and Human Services, National Institutes of Health & National Cancer Institute
       -       Includes Progress on Survivorship Issues including outreach and other programs designed to empower survivors with available knowledge, sources of information and support.

2.     Living Beyond Cancer: Finding a New Balance – US Department of Health and Human Services, National Institutes of Health & National Cancer Institute
       -       Cancer survivors, caregivers, healthcare providers, advocates, researchers, and others detail how the end of cancer treatment marks the beginning of a new phase of life: living beyond cancer.

3.     Long-Term Follow Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers - CureSearch
        -      The Long-Term Follow-Up Guidelines were developed as a resource for clinicians who provide ongoing healthcare to survivors of pediatric cancer. 

4.     NCCN Clinical Practice Guidelines – National Comprehensive Cancer Network
        -      NCCN Guidelines have become the most widely used guidelines in oncology practice and have been requested by cancer care professionals in over 115 countries. There has also been substantial international interest in translating the guidelines into a variety of languages. Select NCCN Guidelines have been translated into Chinese, German, Italian, Japanese, Russian, and Spanish.

5.     The National Action Plan for Cancer Survivorship – Centers for Disease Control & Prevention and the Lance Armstrong Foundation
        -      Developed to identify and prioritize cancer survivorship needs that will advance cancer survivorship in national, state, and community-level public health organizations.

      
     Other Organizational Links