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I.   Quality of Life and Cancer Survivorship

Section Description: This section includes City of Hope publications and figures of the City of Hope Quality of Life conceptual models. The section also includes City of Hope Publications related to Quality of Life in specific populations of ovarian cancer, breast cancer, cancer survivors, and Hematopoietic cell transplantation.

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

          Quality-of-Life Models - all of the models include a list
               of references  
          

          -       Quality of Life Breast Cancer Model      
          -       Quality of Life Cancer Survivor Model              
          -       
Quality of Life Ovarian Cancer Model
          -       Quality of Life Family Caregiver
 Model

          -       Quality of Life Effect of Fatigue Model        
          -       Quality of Life Hematopoietic Cell Transplant (Bone
                    Marrow Transplant) Model
          -       
Quality of Life Ostomy Model
          -       Quality of Life Pain
 Impact Model 
           
  

City of Hope Publications     

  1. Sun, V., Kim, J., Kim, J.Y., Raz, D.J., Merchant, S., Chao, J., Chung, V., Jimenez, T., Wittenberg, E., Grant, M. & Ferrell, B. (2015).  Dietary alterations and restrictions following surgery for upper gastrointestinal cancers:  key components of a health-related quality of life intervention. European Journal of Oncology Nursing, DOI: 10.1016/j.ejon.2015.01.008
     

  2. Sun, V., Grant, M., McMullen, M., Altschuler, A., Mohler, M. J., Hornbrook, M. C., Herrinton, L. J, & Krouse, R. S. (2014). From diagnosis through survivorship: Health-care experiences of colorectal cancer survivors with ostomies. Support Care Cancer, 22(6), 1563-1570. 
    DOI: 10.1007/s00520-014-2118-2.

  3. Sun, V., Grant, M., McMullen, C. K., Altschuler, A., Mohler, M. J., Hornbrook, M. C., Herrinton, L. J., Baldwin, C. M., & Krouse, R. S. (2013) Surviving colorectal cancer: long-term, persistent ostomy-specific concerns and adaptations. Journal of Wound, Ostomy & Continence Nursing, 40(1), 61-72.
    DOI: 10.1097/WON.0b013e3182750143.

  4. Sun, V., Cooke, L., Chung, V., Uman, G., Smith, T.J. & Ferrell, B. (2014).  Feasibility of a palliative care intervention for cancer patients in phase I clinical trials.  Journal of Palliative Medicine, 17(12): 1365-1368. 

  5. Williams, A. C., Reckamp, K., Freeman, B., Sidhu, R., & Grant, M. (2013). Sexuality, lung cancer, and the older adult: An unlikely trio? Advanced Practitioner, 4(5), 331-340.

  6. Ferrell, B., McCabe, M. S., & Levit, L. (2013). The Institute of Medicine Report on high-quality cancer care: Implications for oncology nursing. Oncology Nursing Forum, 40(6), 603-609.
    DOI: 10.1188/13.ONF.603-609. 

  7. Economou, D., Hurria, A., & Grant, M. (2012). Integrating a cancer-specific geriatric assessment into survivorship care. Clinical Journal of Oncology Nursing, 16(3), E78-E85. 
    DOI: 10.1188/12.CJON.E78-E83. 

  8. Grant, M., Economou, D., Ferrell, B. R., & Uman, G. (2012). Educating health care professionals to provide institutional changes in cancer survivorship care. Journal of Cancer Education, Published online 24 January 2012.

  9. Grant, M., Cooke, L., Williams, A. C., Bhatia, S., Popplewell, L., Uman, G., & Forman, S. (2012). Functional status and health-related quality of life among allogeneic transplant patients at hospital discharge: A comparison of sociodemographic, disease and treatment characteristics.  Supportive Care in Cancer, 20(11), 2697-2704.  DOI: 10.1007/s00520-012-1389-8.

  10. Grant, M., McMullen, C., Altschuler, A., Hornbrook, M., Herrinton, L., Wendel, C., Baldwin, C., & Krouse, R.  (2012).  Irrigation practices in long-term survivors of colorectal cancer (CRC) with colostomies Clinical Journal of Oncology Nursing, 16(5), 514-519.
    DOI: 10.1188/12.CJON.514-519.
     
       

  11. Sun, V., Borneman, T., Koczywas, M., Cristea, M., Piper, B., Uman, G., & Ferrell, B. R. (2012). Quality of life and barriers to symptom management in colon cancer. European Journal of Oncology Nursing,  16(3). 276-280. DOI:10.1016/j.ejon.2011.06.011.

  12. 10.     Borneman, T., Piper, B., Koczywas, M., Munevar, C., Sun, V., Uman, G., & Ferrell, B. R. (2012). A qualitative analysis of cancer-related fatigue in cancer-related fatigue in ambulatory oncology. Clinical Journal of Oncology Nursing, 16(1), E26-E32.DOI: 10.1188/12.CJON.E26-E32.

  13. McMullen, C. K., Wasserman,  J., Altschuler, A., Grant, M. L., Hornbrook, M. C., Lijestrand, P., Briggs, C., Krouse, R. S.  (2011). Untreated peristomal skin complications among long-term colorectal cancer survivors with ostomies.  Clinical Journal of Oncology Nursing, 15(6), 644-650.
    DOI: 
    10.1188/11.CJON.644-650.    

  14. Cooke, L., Chung, C., & Grant, M. (2011). Psychosocial care for adolescent and young adult hematopoietic cell transplant patients. Journal of Psychosocial Oncology, 29(4), 394-414.
    DOI: 10.1080/07347332.2011.582636.
         

  15. Grant, M., McMullen, C. K., Altschuler, A., Mohler, M. J., Hornbrook, M. C., Herrinton,  L. J., Wendel, C. S., Baldwin, C. M., & Krouse , R. S.  (2011).  Gender differences in quality of life among long-term colorectal cancer survivors with ostomies.  Oncology Nursing Forum, 38(5), 587-596.  DOI: 10.1188/11.ONF.587-596.

  16. Gemmill, R., Kravits, K., Ortiz, M., Anderson, C., Lai, L., & Grant, M. (2011). What do surgical oncology staff nurses know about colorectal cancer ostomy care? The Journal of Continuing Education in Nursing, 42(2), 81-88. DOI: 10.3928/00220124-20101101-04.     

  17. Hornbrook, M. C., Wendel, C. S., Coons, S. J., Grant, M., Herrinton, L. J., Mohler, M. J.,  Baldwin, C. M., McMullen. C. K., Green, S. B., Altschuler, A., Rawl, S. M., & Krouse, R. S.  (2011).  Complications among colorectal cancer survivors:  SF-6D preference-weighted quality of life scores.  Medical Care, 49(3):321-326.  DOI: 10.1097/MLR.0b013e31820194c8.

  18. Gansler, T., Ganz, P. A., Grant, M., Greene, F. L., Johnstone, P., et. al. (2010). Sixty years of CA: A cancer journal for clinicians. CA Cancer Journal for Clinicians, 60, 345-350. 

  19. Horner, D. J., Wendel, C. S., Skeps, R., Rawl, S. M., Grant, M., Schmidt, C. M., Ko, C. Y. & Krouse, R. S.  (2010).  Positive correlation of employment and psychological well-being for veterans with major abdominal surgery.  The American Journal of Surgery, 200(5), 585-590. 
    DOI: 10.1016/j.amjsurg.2010.07.006. 

  20. Grant, M., Economou, D., & Ferrell, B. (2010). Oncology nurse participation in survivorship care. Clinical Journal of Oncology Nursing. 14(6), 709-715. DOI: 10.1188/10.CJON.709-715.

  21. Economou, D., Edgington, A., & Deutsch, A. (2010). Roles of the clinical nurse specialist and nurse practitioner in survivorship care. Journal of the Advanced Practitioner in Oncology, 1(2), 87-94.

  22. Grant, M. & Sun, V. (2010). Advances in quality of life at the end of life. Seminars in Oncology Nursing, 26(1), 26-35. 
    DOI: 10.1016/j.soncn.2009.11.005.

  23. Levit, L., Smith, A., Benz, E., Ferrell, B. R. (2010). Ensuring quality cancer care through the oncology workforce. Journal of Oncology Practice, 6(1), 7-11.  DOI: 10.1200/JOP.091067.

  24. Crane-Okada, R., Freeman, E., Ross, M., Kiger, H., & Giuliano, A. E. (2010). Training senior peer counselors to provide telephone support for newly diagnosed breast cancer survivors. Journal of Cancer Education, 25(2), 174-179. DOI: 10.1007/s13187-009-0028-7.

  25. Wong, F. L., Francisco, L, Togawa, K., Bosworth, A., Gonzales, M., Hanby, C., Sabado, M., Grant, M., et al. (2010). Long-termrecovery after hematopoietic cell transplantation: Predictors of quality-of-life concerns. Blood, 115(12), 2508-2519.  
    DOI: 10.1182/blood-2009-06-225631. 

  26. Liu, L., Herrinton, L. J., Hornbrook, M. C., Wendel, C. S. Grant, M., & Krouse, R. S. (2010). Early and late complications amonglong-term colorectal cancer survivors with ostomy or anastomosis. Diseases of the Colon & Rectum, 53(2), 200-212.     
    DOI: 10.1007/DCR.0b013e3181bdc408.  
      

  27. Grant, M. & Economou, D. (2010). Survivorship education for quality cancer care: Update. Oncology Issues, 25(3), 48-49. 

  28. Gemmill, R., Sun, V., Ferrell, B. R., Krouse, R. S., & Grant, M. (2010). Going with the flow: Quality-of-life outcomes of cancersurvivors with urinary diversion. Journal of Wound, Ostomy and Continence Nurses Society, 37(1), 65-72.                                 DOI: 10.1097/WON.0b013e3181c68e8f.

  29. Borneman, T., Koczywas, M., 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.

  30. MacDonald, D., Sarna, L., Weitzel, J., Ferrell, B. R. (2009). Women’s perceptions of the personal and family impact of genetic cancer risk assessment: Focus group findings. Journal of Genetic Counseling, 19(2), 148-160. DOI: 10.1007/s10897-009-9267-3.

  31. Ramirez, M., McMullen, C., Grant, M., Alschuler, A., Hornbrook, M. C., & Krouse, R. S. (2009). Figuring out sex in a reconfigured body: experiences of female colorectal cancer survivors with ostomies. Women Health, 49(8), 608-624.                                    
    DOI: 10.1080/03630240903496093. 

  32. Lundy, J. J., Coons, S. J., Wendel, C., Hornbrook, M. C., Herrinton, L., Grant, M., et al. (2009). Exploring household income as apredictor of psychological well-being among long-term colorectal cancer survivors. Quality of Life Research, 18(2), 157-161.  DOI: 10.1007/s11136-008-9432-4.

  33. Baldwin, C. M., Grant, M., Wendel, C., Hornbrook, M. C., Herrinton, L. J. McMullen, C., et al. (2009). Gender differences in sleep disruption and fatigue on quality of life among persons with ostomies. Journal of Clinical Sleep Medicine, 5(4), 335-343.

  34. Altschuler, A., Ramirez, M., Grant, M., Wendel, C., Hornbrook, M. C. Herrinton, L, Krouse, R. S. (2009). The influence ofhusbands’ or male partners’ support on women’s psychosocial adjustment to having an ostomy resulting from colorectal cancer.Journal of Wound, Ostomy, and Continence Nursing, 36(3), 299-305. 
    DOI: 10.1097/WON.0b013e3181a1a1dc. 

  35. Krouse, R. S., Grant, M., Rawl, S. M., Mohler, M. J., Baldwin, C. M., Coons, S. J., et al. (2009). Coping and acceptance: Thegreatest challenge for veterans with intestinal stomas. Journal of Psychosomatic Research, 66, 227-233.                                     
    DOI: 10.1016/j.jpsychores.2008.09.009. 

  36. Krouse, R. S., Herrinton, L. J., Grant, M., Wendel, C. S., Green, S. B., Mohler, M. J., et al. (2009). Health-related quality of lifeamong long-term rectal cancer survivors with an ostomy: manifestations by sex. Journal of Clinical Oncology, 27(28), 4664-4670. DOI: 10.1200/JCO.2008.20.9502.

  37. Cooke, L, Gemmill, R., Kravits, K. & Grant, M. (2009). Psychological issues of stem cell transplant. Seminars in Oncology Nursing, 25(2), 139-150. 
    DOI: 10.1016/j.soncn.2009.03.008.
                                          

  38. Symms, M. R., Rawl, S. M., Grant, M., Wendel, C. S., Coons, S. J., Hickey, S., et al. (2008). Sexual health and quality of lifeamong male veterans with intestinal ostomies. Clinical Nurse Specialist, 22(1), 30-40. DOI: 10.1097/01.NUR.0000304181.36568.a7. 

  39. Sun, V., Ferrell, B., Juarez, G., Wagman, L. D., Yen, Y., & Chung, V. (2008). Symptom concerns and quality of life in hepatobiliary cancers. Oncology Nursing Forum, 35(3), E45-E52.
    DOI: 10.1188/08.ONF.E45-E52. 

  40. Munoz, C., Juarez, G., Munoz, M. L., Portnow, J., Fineman, I., Badie, B., et al. (2008). The quality of life of patients with malignant gliomas and their caregivers. Social Work in Healthcare, 47(4), 455-478.   DOI: 10.1080/00981380802232396.

  41. Mohler, M. J., Coons, S. J., Hornbrook, M. C., Herrinton, L. J., Wendel, C. S., Grant, M., et al. (2008). The health-related qualityof life in long-term colorectal cancer survivors study: objectives, methods and patient sample. Current Medical Research and Opinion, 24(7), 2059-2070.
    DOI: 10.1185/03007990802118360. 

  42. Piper, B. F., Borneman, T., Sun, V., Koczywas, M., Uman, G., Ferrell, B., James, R. (2008). Cancer-related fatigue: role ofoncology nurses in translating National Comprehensive Cancer Network assessment guidelines into practice Clinical Journal of Oncology Nursing, 12(5 Suppl), 37-47.
    DOI: 10.1188/08.CJON.S2.37-47. 

  43. Pittman, J., Rawl, S. M., Schmidt, C. M., Grant, M., Ko, C. Y., Wendel, C., & Krouse, R. S. (2008). Demographic and clinicalfactors related to ostomy complications and quality of life in veterans with an ostomy. Journal of Wound, Ostomy and Continence Nursing, 35(5), 493-503. 
    DOI: 10.1097/01.WON.0000335961.68113.cb

  44. Baldwin, C. M., Grant, M., Wendel, C., Rawl, S., Schmidt, C. M., Ko, C., & Krouse, R. S. (2008). Influence of intestinal stoma onspiritual quality of life of U.S. veterans. Journal of Holistic Nursing, 26(3), 185-194. 
    DOI: 10.1177/0898010108322546.
     

  45. 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.

  46. Sun, V., Borneman, T., Piper, B., Koczywas, M., & Ferrell, B. R. (2008). Barriers to pain assessment and management in cancersurvivorship. Journal of Cancer Survivorship, 2(1), 65-71. 
    DOI: 10.1007/s11764-008-0047-0. 

  47. 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.

  48. Crane-Okada, R., Washer, R. A, Elashoff, D. & Giuliano, A. E. (2008). Long-term morbidity of sentinel node biopsy versuscomplete auxillary dissection for unilateral breast cancer. Annals of Surgical Oncology, 15, 1996-2005. 
    DOI:
     10.1245/s10434-008-9909-y. 

  49. Grant, M., & Economou, D. (2008). The evolving paradigm of adult cancer survivor care. Oncology-Nurse Edition, 22(4), 13-28.

  50. Ferrell, B. R., Paice, J., & Koczywas, M. (2008). New standards and implications for improving the quality of supportiveoncology practice. American Society of Clinical Oncology, 26(23), 3824-3831. DOI: 10.1200/JCO.2007.15.7552.

  51. Shankar, S. M., Carter, A., Sun, C. L., Francisco, L., Baker, K. S., Gurney, J. G., Weisdorf, D. G., Forman, S. J., Robison, L. L., Grant, M., & Bhatia, S. (2007). Health care utilization by adult long-term survivors of hematopoietic cell transplant: Report from the bone marrow transplant survivor study. Cancer Epidemiology, Biomarkers & Prevention, 16(4), 834-839.
    DOI: 
    10.1158/1055-9965.EPI-06-0714. 

  52. Lowe, T., Ferrell, B., & Leong, L. (2007). Quality-of-life issues in the management of epithelial ovarian cancer. Current Treatment Options in Oncology, 8(6), 402-416. DOI: 10.1007/s11864-007-0049-6.

  53. Krouse, R. S., Grant, M., Wendel, C. S., Mohler, M. J., Rawl, S. M., Baldwin, C. M., et al. (2007). A mixed-methods evaluation ofhealth-related quality of life for male veterans with and without intestinal stomas. Diseases of the Colon & Rectum, 50(12), 2054-2066.     DOI: 10.1007/s10350-007-9004-7.

  54. Mularski, R. A., Dy, S. M., Shugarman, L. R., Wilkinson, A. M., Lynn, J., Shekelle, P. G., Morton, S. C., Sun, V. C., Hughes, R. G., Hilton, L. K., et al., (2007). A systematic review of measures of end-of-life care and its outcomes. Health Services Research, 42(5), 1848-1870.
    DOI: 10.1111/j.1475-6773.2007.00721.x.

  55. 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.

  56. Crane-Okada, R. (2007). A compass for the cancer journey: Scientific, spiritual, and practical directives. Oncology Nursing Forum, 34(5), 945-954.                DOI: 10.1188/07.ONF.945-955.

  57. 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.
      
    DOI: 10.1016/j.amjsurg.2007.08.020.

  58. 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.
    DOI: 10.1097/01.WON.0000290732.15947.9e. 

  59. Coons, S. J., Chongpison, Y., Wendel, C. S., Grant, M., & Krouse, R. (2007). Overall quality of life and difficulty paying forostomy supplies in the Veterans affairs ostomy health-related quality of life study: An exploratory analysis. Medical Care, 45(9), 891-895. DOI: 10.1097/MLR.0b013e318074ce9b.

  60. 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. DOI: 10.1007/s10350-007-9004-7.

  61. Krouse, R., 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.
    DOI: 10.1016/j.jss.2006.04.033. 

  62. 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).

  63. van Dis, F. W., Mols, F., Vingerhoets, A. J., Ferrell, B., van de Poll-Franse, L. V. (2006). A validation study of the Dutch version of the Quality of Life-Cancer Survivor (QOL-CS) questionnaire in a group of prostate cancer survivors. Quality of Life Research, 15(10), 1607-1612. DOI: 10.1007/s11136-006-0015-y.

  64. Ferrell, B. R., & Winn, R. (2006). Medical and nursing education and training opportunities to improve survivorship care. Journal of Clinical Oncology, 24(32), 5142-5148. DOI: 10.1200/JCO.2006.06.0970.

  65. Carter, A., Robison, L. L., Francisco, L., Smith, D., Grant, M., Baker, K. S., et al. (2006). Prevalence of conception and pregnancy outcomes after hematopoietic cell transplantation: report from the Bone Marrow Transplant Survivor Study. Bone Marrow Transplant, 37(11), 1023-1029.
    DOI: 10.1038/sj.bmt.1705364. 

  66. 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.

  67. Sherman, R. S., Cooke, L., Grant, M. (2005). Dialogue among survivors of Hematopoietic cell transplantation: Support groupthemes. The Journal of Psychosocial Oncology, 23(1), 1-24. 
    DOI: 10.1300/J077v23n01_01. 

  68. Ferrell, B. R., Cullinane, C. A., Ervin, K., Melancon, C., Uman, G. C., & Juarez, G. (2005). Perspectives on the impact of ovariancancer: women’s views of quality of life. Oncology Nursing Forum, 32 (6), 1143-1149. DOI: 10.1188/05.ONF.1143-1149.

  69. 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.

  70. Ferrell, B. R., 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. DOI: 10.1188/03.ONF.E1-E11.

  71. Ferrell, B. R., Smith, S., Cullinane, C., & Melancon, C. (2003). Psychological wellbeing and quality of life in ovarian cancer survivors. Cancer, 98(5), 1061-1071.

  72. Ferrell, B.R., Hassey Dow, K., Grant, M. (1995).  Measurement of the quality of life in cancer survivors. Quality of Life Research, (4), 523-531 (Seminal Article)

     
     
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    DOI: 10.1016/j.ejon.2009.10.001.
     
  12. Beasley, J. M., Newcomb, P. A., Trentham-Dietz, A., Hampton, J. M., Ceballow, R. M., Titus-Ernstoff, L, et al. (2010). Socialnetworks and survival after breast cancer diagnosis. Journal of Cancer Survivorship, 4(4), 372-380. DOI: 10.1007/s11764-010-0139-5.
     
  13. Prouty, D., Ward-Smith, P, & Hutto, C. J. (2010). The lived experience of adult survivors of childhood cancer. Journal of Pediatric Oncology Nursing, 23(3), 143-151. DOI: 10.1177/1043454206287295.
     
  14. Work and Cancer Survivors
    -
      Feuerstein, M. (2010). NY: Springer Science & Business. ISBN #: 978-1441981554.
     
  15.  Boehm, D. U., Lebrecht, A., Eckhardt, T., Albrick, S., Schmidt, M., Siggelkow, W., et al. (2009). Quality of life and adjuvanttamoxifen treatment in breast cancer patients. European Journal of Cancer Care, 18(5), 500-506. DOI: 10.1111/j.1365-2354.2008.01015.x.
     
  16. Wildes, K. A., Miller, A. R., San Miguel de Majors, S., & Ramirez, A. G. (2009). The religiosity/spirituality of Latina breast cancer survivors and influence on health-related quality of life. Psycho-Oncology, 18(8), 831-840. DOI: 10.1002/pon.1475.
     
  17. Janz, N. K., Mujahid, M. S., Hawley, S. T., Griggs, J. J., Alderman, A., Hamilton, A. S., et al. (2009). Racial/ethnic differences inquality of life after diagnosis of breast cancer. Journal of Cncer Survivorship, 3(4), 212-222.
    DOI: 10.1007/s11764-009-0097-y.
     
  18. Jacobsen, P. B. (2009). Clinical practice guidelines for the psychosocial care of cancer survivors. Cancer, 115(18 Suppl), 4419-4429.
    DOI: 10.1002/cncr.24589.
        
     
  19. 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, 1932-2259. DOI: 10.1007/s11764-009-0087-0.
     
  20. Richardson, L. C., Wingo, P. A., Zack, M. M., Zahran, H. S., & King, J. B. (2008). Health-related quality of life in cancer survivors between ages 20 and 64 years. Cancer, 112(6), 1380-1389.
    DOI: 10.1002/cncr.23291.
     
  21. Sammarco, A., & Konecny, L. M. (2008). Quality of life, social support, and uncertainty among Latina breast cancer survivors. Oncology Nursing Forum, 35(5), 844-849. DOI: 10.1188/08.ONF.844-849.
     
  22. McCabe, M. S., & Jacobs, L. (2008). Survivorship care: Models and programs. Seminars in Oncology Nursing, 24(3), 202-207.
    DOI: 10.1016/j.soncn.2008.05.008.
     
  23. Miller, K. D. & Triano, L. R. (2008). Medical issues in cancer survivors: A review. Cancer Journal, 14(6), 375-387.  DOI: 10.1097/PPO.0b013e31818ee3dc.
     
  24. Ahmed, R. L., Prizement, A., Lazovich, D., Schmitz, K. H., & Folsom, A. R. (2008). Lymphedema and quality of life in breastcancer survivors: The Iowa women’s health study. Journal of Clinical Oncology, 26(35), 5689-5696. DOI: 10.1200/JCO.2008.16.4731.
     
  25. Meeske, K. A., & Nelson, M. B. (2008). The role of long-term follow-up clinic in discovering new emerging late effects in adultsurvivors of childhood cancer. Journal of Pediatric Oncology Nursing, 25(4), 213-219. DOI: 10.1177/1043454208320708.
     
  26. 100 Questions & Answers About Life After Cancer: A Survivor’s Guide
    - Tolbert, P. & Damaskos, P. (2008). MA: Jones and Bartlett Publishers. ISBN #: 0763750697.
     
  27. Sharp, L. K., Kinahan, K. E., Didwania, A., & Stolley, M. (2007). Quality of life in adult survivors of childhood cancer. Journal of Pediatric Oncology Nursing, 24(4), 220-226. DOI: 10.1177/1043454207303885.
     
  28. Sevy, R., & Riley, M. (2007). Partnering with cancer survivors. Oncology Issues (Sept/Oct), 42-45.
     
  29. Wethal, R., Kjekshus, J., Roislien, J., Ueland, T., Andreassen, A. K., Wergeland, R., et al. (2007). Treatment-related differences incardiovascular risk factors in long-term survivors of testicular cancer. Journal of Cancer Survivorship, 1(1), 8-16.      DOI: 10.1007/s11764-007-0012-3.
     
  30. Handbook of Cancer Survivorship
    Feuerstein, M. (2007). NY: Springer Science & Business. ISBN #: 0387345612.
     
  31. Cancer Survivorship – Today and Tomorrow
     Ganz, P. A. (2007). NY: Springer Science & Business. ISBN #: 387343490.
     
  32. 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.
     
  33. 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.
     
  34. Everyone’s Guide to Cancer Survivorship: A Road Map for Better Health
     Gautier, H. & Rosenbaum, E. H. (2007). NJ: Andrews McMeel Publishing.  ISBN #: 0740768700.
     
  35.  The Cancer Survivor’s Guide – The Essential Handbook to Life after Cancer
    Feuerstein, M. & Findley, P. (2006).  NY: Marlowe & Company.  ISBN #: 569243328.
     
  36. Childhood Cancer Survivors: A Practical Guide to Your Future, 2nd Ed (2006).
    Keen, N, Hobbie, W., Ruccione, K. (2006). CA: Sebastopol: O’Reilly Media.
    ISBN# 
    978-0-596-52851-5.
      
       
  37. From Cancer Patient to Cancer Survivor: Lost in Transition
    Hewitt, M., Greenfield, S., & Stoval, E. (2005). DC: The National Academies Press.  ISBN #: 309095956.

     
    
    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. Coping with Cancer: Supportive and Palliative Care - 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.
     

  3. 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.
     

  4. Pink Ribbon Survivors Network - Rocky Mountain Cancer Centers
    -
     This network hosts three online libraries that serve as resources for breast cancer survivors, care givers, healthcare providers and referring physicians. Website: 
     

  5. 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.
     

  6. Survivorship: During and After Treatment – American Cancer Society
    -
     Tips on staying active and healthy during and after cancer treatment. You can also get information on dealing with the possibility of cancer recurrence, and find inspiration and hope in stories about other people whose lives have been touched by cancer.    
          

Guidelines/Clinical Pathways

  1. 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.  
     
  2. NCCN 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.
     
  3.  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

         A Lion in the House  
         American Cancer Society  
         CancerCare  
         Cancer Support Community  
         Cancer Survivors On Line  
         Cancer Survivor Toolbox  
         CureToday  
         Institute of Medicine  
         International Society for Quality of Life Research  
         Leukemia & Lymphoma Society  
         LIVESTRONG Foundation  
         National Cancer Institute: Cancer Survivorship
        Research
 
         National Coalition for Cancer Survivorship: Cancer
        Survivorship Toolbox
 
         Oncology Nursing Society: The Cancer Journey  
         Planet Cancer (for Young Adults with Cancer)  
         Quality of Life with Cancer Supportive Care  
         SAMfund (Young Adult Survivors of Cancer)  
         Survivorship Center: Living Beyond Cancer  
         UCLA-LIVESTRONG Survivorship Center of
        Excellence
 
         Young Survival Coalition

 

 

 


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