Cancer patients' and professional caregivers' needs, preferences and factors associated with receiving and providing fertility-related information: A mixed-methods systematic review

International Journal of Nursing Studies

Volumn 51, Issue 2, 2014, Pages 300-319

  Goossens, Joline ^a   Delbaere, Ilse ^a   Van Lancker, Aurélie ^a   Beeckman, Dimitri ^a   Verhaeghe, Sofie ^a   Van Hecke, Ann ^a,b  

^a GHENT UNIVERSITY   (Belgium)

^b GHENT UNIVERSITY HOSPITAL   (Belgium)

Author keywords

Cancer patients; Caregivers; Fertility; Fertility preservation; Information services; Systematic review

Indexed keywords

ADULT; CANCER PATIENTS; CAREGIVER; FEMALE; FERTILITY; FERTILITY PRESERVATION; HUMAN; INFORMATION SERVICE; MALE; NEOPLASM; NURSING; PATHOPHYSIOLOGY; PSYCHOLOGICAL ASPECT; REVIEW; SYSTEMATIC REVIEW;

CANCER PATIENTS; CAREGIVERS; FERTILITY; FERTILITY PRESERVATION; INFORMATION SERVICES; SYSTEMATIC REVIEW;

ADULT; CAREGIVERS; FEMALE; FERTILITY; HUMANS; MALE; NEOPLASMS;

EID: 84891162583     PISSN: 00207489     EISSN: None     Source Type: Journal    
DOI: 10.1016/j.ijnurstu.2013.06.015     Document Type: Review

References (83)

1. Ajala T., Rafi J., Larsen-Disney P., Howell R. Fertility preservation for cancer patients: a review. Obstetrics and Gynecology International 2010, 160386.
2. Anderson R.A., Weddell A., Spoudeas H.A., Douglas C., Shalet S.M., Levitt G., Wallace W.H.B. Do doctors discuss fertility issues before they treat young patients with cancer?. Human Reproduction 2008, 23(10):2246-2251.
3. Armuand G.M., Rodriguez-Wallberg K.A., Wettergren L., Ahlgren J., Enblad G., Hoglund M., Lampic C. Sex differences in fertility-related information received by young adult cancer survivors. Journal of Clinical Oncology 2012, 30(17):2147-2153.
4. Bishop C.S. The critical role of oncology nurse practitioners in cancer care: future implications. Oncology Nursing Forum 2009, 36(3):267-269.
5. Blackburn K.M. Roles of advanced practice nurses in oncology. Oncology 1998, 12(4):591-596. 598.
6. Burns K.C., Boudreau C., Panepinto J.A. Attitudes regarding fertility preservation in female adolescent cancer patients. Journal of Pediatric Hematology/Oncology 2006, 28(6):330-354.
7. Canada A.L., Schover L.R. Research promoting better patient education on reproductive health after cancer. Journal of the National Cancer Institute Monographs 2005, 34:98-100.
8. Canada A.L., Schover L.R. The psychosocial impact of interrupted childbearing in long-term female cancer survivors. Psycho-Oncology 2012, 21(2):134-143.
9. Carper E., Haas M. Advanced practice nursing in radiation oncology. Seminars in Oncology Nursing 2006, 22(4):203-211.
10. Carter J., Raviv L., Applegarth L., Ford J.S., Josephs L., Grill E., Sklar C., Sonoda Y., Baser R.E., Barakat R.R. A cross-sectional study of the psychosexual impact of cancer-related infertility in women: third-party reproductive assistance. Journal of Cancer Survivorship 2010, 4(3):236-246.
11. Chapple A., Salinas M., Ziebland S., McPherson A., MacFarlane A. Fertility issues: the perceptions and experiences of young men recently diagnosed and treated for cancer. Journal of Adolescent Health 2007, 40(1):69-75.
12. Cobo A., Kuwayama M., Perez S., Ruiz A., Pellicer A., Remohi J. Comparison of concomitant outcome achieved with fresh and cryopreserved donor oocytes vitrified by the Cryotop method. Fertility and Sterility 2008, 89(6):1657-1664.
13. Council of Europe Recent Demographic Developments in Europe 2004 2005, Council of Europe Press, Strasbourg.
14. Crawshaw M., Glaser A., Hale J., Sloper P. Male and female experiences of having fertility matters raised alongside a cancer diagnosis during the teenage and young adult years. European Journal of Cancer Care 2009, 18(4):381-390.
15. Diedrich K., Fauser B.C., Devroey P. Cancer and fertility: strategies to preserve fertility. Reproductive Biomedicine Online 2011, 22(3):232-248.
16. Dohle G.R. Male infertility in cancer patients: review of the literature. International Journal of Urology 2010, 17(4):327-331.
17. Domingo J., Ayllon Y., Domingo S., Cobo A., Crespo J., Pellicer A. New approaches to female fertility preservation. Clinical and Translational Oncology 2009, 11(3):154-159.
18. Duffy C.M., Allen S.M., Clark M.A. Discussions regarding reproductive health for young women with breast cancer undergoing chemotherapy. Journal of Clinical Oncology 2005, 23(4):766-773.
19. Ethics Committee of the American Society for Reproductive Medicine Fertility preservation and reproduction in cancer patients. Fertility and Sterility 2005, 83(6):1622-1628.
20. Farthing A.J., Ghaem-Maghami S., Royal College of Obstetricians and Gynaecologists Fertility sparing treatments in gynaecological cancers. SIP Opinion Paper No. 35 2013, (accessed February 2013). http://www.rcog.org.uk/files/rcog-corp/1.2.13%20SIP35%20Fertility%20Sparing.pdf.
21. Ferlay J., Shin H., Bray F., Forman D., Mathers C., Parkin D.M. GLOBOCAN 2008 v1.2, Cancer Incidence and Mortality Worldwide: IARC Cancer Base No. 10 2012, International Agency for Research on Cancer, Lyon, France.
22. Gardino S.L., Emmanuel L.L. Choosing life when facing death: understanding fertility preservation decision-making for cancer patients. Cancer Treatment and Research 2010, 256:447-458.
23. Gorman J.R., Usita P.M., Madlensky L., Pierce J.P. Young breast cancer survivors: their perspectives on treatment decisions and fertility concerns. Cancer Nursing 2011, 34(1):32-40.
24. Grime J., Blenkinsopp A., Raynor D.K., Pollock K., Knapp P. The role and value of written information for patients about individual medicines: a systematic review. Health Expectations 2007, 10(3):286-298.
25. Hammond C.T., Beckjord E.B., Arora N.K., Bellizzi K.M., Jeffery D.D., Aziz N.M. Non-Hodgkin's lymphoma survivors' fertility and sexual function-related information needs. Fertility and Sterility 2008, 90(4):1256-1258.
26. Hamric A.B., Spross J.A., Hanson C.M. A definition of advanced nursing practice. Advanced Practice Nursing: An Integrative Approach 2009, 76-94. Saunders, Philadelphia.
27. Herbst R.S., Bajorin D.F., Bleiberg H., Blum D., Hao D., Johnson B.E., Ozols R.F., Demetri G.D., Ganz P.A., Kris M.G., Levin B., Markman M., Raghavan D., Reaman G.H., Sawaya R., Schuchter L.M., Sweetenham J.W., Vahdat L.T., Vokes E.E., Winn R.J., Mayer R.J. Clinical Cancer Advances 2005: major research advances in cancer treatment, prevention, and screening - a report from the American Society of Clinical Oncology. Journal of Clinical Oncology 2006, 24(1):190-205.
28. Higgins, J., Green, S., 2011. Cochrane Handbook for Systematic Reviews of Interventions. (accessed March 2011). http://www.cochrane-handbook.org/.
29. Holton S., Kirkman M., Rowe H., Fisher J. The childbearing concerns and related information needs and preferences of women of reproductive age with a chronic, noncommunicable health condition: a systematic review. Womens Health Issues 2012, 22(6):e541-e552.
30. Howard-Anderson J., Ganz P.A., Bower J.E., Stanton A.L. Quality of life, fertility concerns, and behavioral health outcomes in younger breast cancer survivors: a systematic review. Journal of the National Cancer Institute 2012, 104(5):386-405.
31. Howlader N., Noon M., Krapcho M., Neyman N., Aminou R., Altekruse S., Kosary C., Ruhl J., Tatalovich Z., Cho H., Mariotto H., Eisner M., Lewis D., Chen H., Feuer E., Cronin K. SEER Cancer Statistics Review, 1975-2009 (Vintage 2009 Populations) 2012, National Cancer Institute, Bethesda, MD.
32. Huyghe E., Sui D., Odensky E., Schover L.R. Needs assessment survey to justify establishing a reproductive health clinic at a comprehensive cancer center. Journal of Sexual Medicine 2009, 6(1):149-163.
33. Jeruss J.S., Woodruff T.K. Preservation of fertility in patients with cancer. The New England Journal of Medicine 2009, 360(9):902-911.
34. Kangas M., Henry J.L., Bryant R.A. Prospective study of autobiographical memory and posttraumatic stress disorder following cancer. Journal of Consulting and Clinical Psychology 2005, 73(2):293-299.
35. Karaöz B., Aksu H., Küçük M. A qualitative study of the information needs of premenopausal women with breast cancer in terms of contraception, sexuality, early menopause, and fertility. International Journal of Gynecology and Obstetrics 2010, 109(2):118-120.
36. Kessels R.P. Patients' memory for medical information. Journal of the Royal Society of Medicine 2003, 96(5):219-222.
37. King L., Quinn G.P., Vadaparampil S.T., Gwede C.K., Miree C.A., Wilson C., Clayton H., Perrin K. Oncology nurses' perceptions of barriers to discussion of fertility preservation with patients with cancer. Clinical Journal of Oncology Nursing 2008, 12(3):467-476.
38. Landis J.R., Koch G.G. The measurement of observer agreement for categorical data. Biometrics 1977, 33(1):159-174.
39. Landmark B.T., Wahl A. Living with newly diagnosed breast cancer: a qualitative study of 10 women with newly diagnosed breast cancer. Journal of Advanced Nursing 2002, 40(1):112-121.
40. Lee S.J., Schover L.R., Partridge A.H., Patrizio P., Wallace W.H., Hagerty K., Beck L.N., Brennan L.V., Oktay K. American Society of Clinical Oncology recommendations on fertility preservation in cancer patients. Journal of Clinical Oncology 2006, 24(18):2917-2931.
41. Lee R.J., Wakefield A., Foy S., Howell S.J., Wardley A.M., Armstrong A.C. Facilitating reproductive choices: the impact of health services on the experiences of young women with breast cancer. Psycho-Oncology 2011, 20(10):1044-1052.
42. Mancini J., Rey D., Préau M., Malavolti L., Moatti J.P. Infertility induced by cancer treatment: inappropriate or no information provided to majority of French survivors of cancer. Fertility and Sterility 2008, 90(5):1616-1625.
43. Matthews M.L., Hurst B.S., Marshburn P.B., Usadi R.S., Papadakis M.A., Sarantou T. Cancer, fertility preservation, and future pregnancy: a comprehensive review. Obstetrics and Gynecology International 2012, 11. 10.1155/2012/953937.
44. Mayer H., Nonn C., Osterbrink J., Evers G.C. Quality criteria of assessment scales - Cohen's kappa as measure of interrator reliability. Pflege 2004, 17(1):36-46.
45. McAuley L., Pham B., Tugwell P., Moher D. Does the inclusion of grey literature influence estimates of intervention effectiveness reported in meta-analyses?. Lancet 2000, 356(9237):1228-1231.
46. McLaren J.F., Bates G.W. Fertility preservation in women of reproductive age with cancer. American Journal of Obstetrics and Gynecology 2012, 27(6):455-462.
47. Meneses K., McNees P., Azuero A., Jukkala A. Development of the Fertility and Cancer Project: an Internet approach to help young cancer survivors. Oncology Nursing Forum 2010, 37(2):191-197.
48. Mesters I., van den Borne B., De Boer B.M., Pruyn J. Measuring information needs among cancer patients. Patient Education and Counseling 2001, 43(3):253-262.
49. Mills M.E., Davidson R. Cancer patients' sources of information: use and quality issues. Psycho-Oncology 2002, 11(5):371-378.
50. Mirza M., Fitzpatrick-Lewis D., Thomas H. Is there a relationship between food insecurity and overweight/obesity?. Effective Public Health Practice Project 2007, Ontario Public Health Research, Education and Development, Hamilton, ON.
51. Morris R., MacNeela P., Scott A., Treacy P., Hyde A., O'Brien J., Lehwaldt D., Byrne A., Drennan J. Ambiguities and conflicting results: the limitations of the kappa statistic in establishing the interrater reliability of the Irish nursing minimum data set for mental health: a discussion paper. International Journal of Nursing Studies 2008, 45(4):645-647.
52. Nagel K., Neal M. Discussions regarding sperm banking with adolescent and young adult males who have cancer. Journal of Pediatric Oncology Nursing 2008, 25(2):102-106.
53. Nakayama K., Liu P., Detry M., Schover L.R., Milbourne A., Neumann J., Rondon G., Thewes B., Champlin R.E., Ueno N.T. Receiving information on fertility- and menopause-related treatment effects among women who undergo hematopoietic stem cell transplantation: changes in perceived importance over time. Biology of Blood and Marrow Transplantation 2009, 15(11):1465-1474.
54. NICE. Fertility Assessment and Treatment for People With Fertility Problems (CG 156) 2013, 42-43. National Institute for Clinical Excellence, London, http://guidance.nice.org.uk/CG156 (accessed February 2013).
55. Peate M., Meiser B., Friedlander M., Zorbas H., Rovelli S., Sansom-Daly U., Sangster J., Hadzi-Pavlovic D., Hickey M. It's now or never: fertility-related knowledge, decision-making preferences, and treatment intentions in young women with breast cancer - an Australian fertility decision aid collaborative group study. Journal of Clinical Oncology 2011, 29(13):1670-1677.
56. Peddie V.L., Porter M.A., Barbour R., Culligan D., MacDonald G., King D., Horn J., Bhattacharya S. Factors affecting decision making about fertility preservation after cancer diagnosis: a qualitative study. International Journal of Obstetrics and Gynaecology 2012, 119(9):1049-1057.
57. Penrose R., Beatty L., Mattiske J., Koczwara B. Fertility and cancer - a qualitative study of Australian cancer survivors. Supportive Care in Cancer 2012, 20(6):1259-1265.
58. Peterson B.D., Pirritano M., Tucker L., Lampic C. Fertility awareness and parenting attitudes among American male and female undergraduate university students. Human Reproduction 2012, 27(5):1375-1382.
59. Public Health Resource Unit, 2006. Critical Appraisal Skills Programme (CASP) making sense of evidence. 10 questions to help you make sense of qualitative research. (accessed 2011). http://www.arf-asia.org/resources/ten_question_to_make_sensible_with_research.pdf.
60. Quinn G.P., Vadaparampil S.T. Fertility preservation and adolescent/young adult cancer patients: physician communication challenges. Journal of Adolescent Health 2009, 44(4):394-400. Fertility Preservation Research Group.
61. Quinn G.P., Vadaparampil S.T., Gwede C.K., Miree C., King L.M., Clayton H.B., Wilson C., Munster P. Discussion of fertility preservation with newly diagnosed patients: oncologists' views. Journal of Cancer Survivorship 2007, 1(2):146-155.
62. Quinn G.P., Murphy D., Knapp C., Stearsman D.K., Bradley-Klug K.L., Sawczyn K., Clayman M.L. Who decides? Decision making and fertility preservation in teens with cancer: a review of the literature. Society for Adolescent Health and Medicine 2011, 49:337-346.
63. Ritz L.J., Nissen M.J., Swenson K.K., Farrell J.B., Sperduto P.W., Sladek M.L., Lally R.M., Schroeder L.M. Effects of advanced nursing care on quality of life and cost outcomes of women diagnosed with breast cancer. Oncology Nursing Forum 2000, 27(6):923-932.
64. Rodriguez-Wallberg K.A., Oktay K. Fertility preservation medicine: options for young adults and children with cancer. Journal of Pediatric Hematology Oncology 2010, 32(5):390-396.
65. Royal College of Nursing Managing the Fertility of Male Cancer Patients. RCN Guidance for Oncology and Haematology Nurses 2004, RCN, London.
66. Royal College of Nursing Competences: Specialist Competences for Fertility Nurses 2011, RCN, London. second ed.
67. Schover L.R., Brey K., Lichtin A., Lipshultz L.I., Jeha S. Knowledge and experience regarding cancer, infertility, and sperm banking in younger male survivors. Journal of Clinical Oncology 2002, 20(7):1880-1889.
68. Schover L.R., Rybicki L.A., Martin B.A., Bringelsen K.A. Having children after cancer. A pilot survey of survivors' attitudes and experiences. Cancer 1999, 15(4):697-709.
69. Thewes B., Meiser B., Rickard J., Friedlander M. The fertility- and menopause-related information needs of younger women with a diagnosis of breast cancer: a qualitative study. Psycho-Oncology 2003, 12(5):500-511.
70. Thewes B., Meiser B., Taylor A., Phillips K.A., Pendlebury S., Capp A., Dalley D., Goldstein D., Baber R., Friedlander M.L. Fertility- and menopause-related information needs of younger women with a diagnosis of early breast cancer. Journal of Clinical Oncology 2005, 23(22):5155-5165.
71. Thomas B.H., Ciliska D., Dobbins M., Micucci S. A process for systematically reviewing the literature: providing the research evidence for public health nursing interventions. Worldviews on Evidence Based Nursing 2004, 1(3):176-184.
72. Tschudin S., Bitzer J. Psychological aspects of fertility preservation in men and women affected by cancer and other life-threatening diseases. Human Reproduction Update 2009, 15(5):587-597.
73. Tschudin S., Bunting L., Abraham J., Gallop-Evans E., Fiander A., Boivin J. Correlates of fertility issues in an internet survey of cancer survivors. Journal of Psychosomatic Obstetrics and Gynecology 2010, 31(3):150-157.
74. Vadaparampil S.T., Clayton H., Quinn G.P., King L.M., Nieder M., Wilson C. Pediatric oncology nurses' attitudes related to discussing fertility preservation with pediatric cancer patients and their families. Journal of Pediatric Oncology Nursing 2007, 24(5):255-263.
75. Vadaparampil S., Quinn G., King L., Wilson C., Nieder M. Barriers to fertility preservation among pediatric oncologists. Patient Education & Counseling 2008, 72(3):402-410.
76. Valdivieso M., Kujawa A.M., Jones T., Baker L.H. Cancer survivors in the United States: a review of the literature and a call to action. International Journal of Medical Sciences 2012, 9(2):163-173.
77. Verbrugghe M., Verhaeghe S., Lauwaert K., Beeckman D., Van Hecke A. Determinants and associated factors influencing medication adherence and persistence to oral anticancer drugs: a systematic review. Cancer Treatment Reviews 2013, 39(6):610-621.
78. Viswanath K. Science and society: the communications revolution and cancer control. Nature Reviews Cancer 2005, 5(10):828-835.
79. Vyncke V., De Clercq B., Stevens V., Costongs C., Barbareschi G., Jónsson S.H., Darias S., Kebza V., Currie C., Maes L. Does neighborhood social capital make a difference for levelling the health gradient in children? A literature review. BMC Public Health 2013, 13(65). http://www.biomedcentral.com/1471-2458/13/65 (accessed 26.01.13).
80. Wenzel L., Dogan-Ates A., Habbal R., Berkowitz R., Goldstein D.P., Bernstein M., Kluhsman B.C., Osann K., Newlands E., Seckl M.J., Hancock B., Cella D. Defining and measuring reproductive concerns of female cancer survivors. Journal of the National Cancer Institute Monographs 2005, 34:94-98.
81. Wilkes S., Coulson S., Crosland A., Rubin G., Stewart J. Experience of fertility preservation among younger people diagnosed with cancer. Human Fertility 2010, 13(3):151-158.
82. Zebrack B. Information and service needs for young adult cancer patients. Supportive Care in Cancer 2008, 16(12):1353-1360.
83. Zebrack B. Information and service needs for young adult cancer survivors. Supportive Care in Cancer 2009, 17(4):349-357.