Introduction: Breast cancer is one of the most common cancers and a serious concern for women's health. Providing sufficient information to these patients increases the level of their participation and improves the quality of their care. Therefore, given the high survival rate of this cancer, it is necessary to understand their information needs. The purpose of this study was to evaluate the information needs of women with breast cancer.
Material and Methods: The study is a systematic review of the literature. A search of the databases of PubMed, Scopus, Science Direct and ProQuest has been conducted on studies published in English over the period 2010-2017. 2881 articles were retrieved and evaluated for title, abstract and full text and after eliminating duplicate and unrelated cases, 18 articles related to the purpose of the study were selected. The articles were then analyzed using content analysis.
Results: Of the 2881 retrieved articles, 18 studies on the information needs of patients with breast cancer were finally reviewed. According to these studies, most information needs were in the areas of diagnosis and treatment (first rank), daily activities (second rank), disease acceptance and self-image (third rank), personal and family life (fourth rank) and sexual health (fifth rank). The most important information needs in the field of diagnosis and treatment was outcomes and side effects of treatment, in the area of daily activities on the impact of disease on social activity, in the area of disease acceptance and self-image was breast reconstruction, body appearance and need for consultation, in the area of personal life, cancer risk for the family and in the area of sexual health was the effect of cancer on sexual attraction were the most cited needs.
Conclusion:Providing information to patients is one of the most important factors in supporting cancer care and understanding the information needs is the first step in seeking information. Patients with breast cancer are interested in receiving information that will help them understand cancer, make decisions about it, and manage their treatment.
Mousavi SM, Montazeri A, Mohagheghi MA, Jarrahi AM, Harirchi I, Najafi M, et al. Breast cancer in Iran: An epidemiological review. Breast J. 2007; 13(4): 383-91. PMID: 17593043 DOI: 10.1111/j.1524-4741.2007.00446.x
Andic S, Karayurt O. Determination of information and support needs of first degree relatives of women with breast cancer. Asian Pac J Cancer Prev. 2012; 13(9): 4491-9. PMID: 23167367 DOI: 10.7314/apjcp.2012.13.9.4491
Breast cancer [Internet]. 2017 [cited: 18 Feb 2018]. Available at: http://globocan.iarc.fr/old/FactSheets/cancers/breast-new.as.
Taghavi A, Fazeli Z, Vahedi M, Baghestani AR, Pourhoseingholi A, Barzegar F, et al. Increased trend of breast cancer mortality in Iran.
Asian Pac J Cancer Prev. 2012; 13(1): 367-70. PMID: 22502702 DOI: 10.7314/apjcp.2012.13.1.367
Shahsavari H, Matory P, Zare Z, Taleghani F, Kaji MA, et al. Effect of self-care education on the quality of life in patients with breast cancer. J Educ Health Promot. 2015; 4:70. PMID: 27462612 DOI: 10.4103/2277-9531.171782
Hong-li C, Xiao-Chun X, Jiang-Bin J, Jing-Bo Z, Yao W. Quality of life in patients with breast cancer and their rehabilitation needs. Pak J Med Sci. 2014; 30(1): 126-30. PMID: 24639845 DOI: 10.12669/pjms.301.3952
Kuijpers W, Groen WG, Oldenburg HS, Wouters MW, Aaronson NK, van Harten WH. Development of MijnAVL, an interactive portal to empower breast and lung cancer survivors: An iterative, multi-stakeholder approach. JMIR Res Protoc. 2015; 4(1): e14. PMID: 25614924 DOI: 10.2196/resprot.3796
Self Care Forum. What do we mean by self care and why is it good for people? [Internet]. 2017 [cited: 1 Jan 2018]. Available at: http://www.selfcareforum.org/about-us/what-do-we-mean-by-self-care-and-why-is-good-for-people.
Matsuyama RK, Wilson-Genderson M, Kuhn L, Moghanaki D, Vachhani H, Paasche-Orlow M. Education level, not health literacy, associated with information needs for patients with cancer. Patient Educ Couns. 2011; 85(3): e229-36. PMID: 21543182 DOI: 10.1016/j.pec.2011.03.022
Lei C, Har YC, Abdullah KL. Informational needs of breast cancer patients on chemotherapy: Differences between patients’ and nurses’ perceptions. Asian Pac J Cancer Prev. 2011; 12(3): 797-802. PMID: 21627386
Husson O, Mols F, Van de Poll-Franse L. The relation between information provision and health-related quality of life, anxiety and depression among cancer survivors: A systematic review. Ann Oncol. 2011; 22(4): 761-72. PMID: 20870912 DOI: 10.1093/annonc/mdq413
Lee YM, Francis K, Walker J, Lee SM. What are the information needs of Chinese breast cancer patients receiving chemotherapy? Eur J Oncol Nurs. 2004; 8(3): 224-33. PMID: 15304230 DOI: 10.1016/j.ejon.2003.12.006
Kent EE, Arora NK, Rowland JH, Bellizzi KM, Forsythe LP, Hamilton AS, et al. Health information needs and health-related quality of life in a diverse population of long-term cancer survivors. Patient Educ Couns. 2012; 89(2): 345-52. PMID: 23021856 DOI: 10.1016/j.pec.2012.08.014
Kuijpers W, Groen WG, Loos R, Oldenburg HS, Wouters MW, Aaronson NK, et al. An interactive portal to empower cancer survivors: A qualitative study on user expectations. Support Care Cancer. 2015; 23(9): 2535-42. PMID: 25876157 DOI: 10.1007/s00520-015-2605-0
Fourie I. Promoting awareness of information needs and realising gaps in knowledge: Examples from healthcare. Bladen voor documentatie. 2013; 3: 32-40.
Kimiafar K, Sarbaz M, Shahid Sales S, Esmaeili M, Javame Ghazvini Z. Breast cancer patients' information needs and information-seeking behavior in a developing country. Breast J. 2016; 28: 156-60. PMID: 27318171 DOI: 10.1016/j.breast.2016.05.011
Maddock C, Lewis I, Ahmad K, Sullivan R. Online information needs of cancer patients and their organizations. Ecancermedicalscience. 2011; 5: 235. PMID: 22276067 DOI: 10.3332/ecancer.2011.235
Wang SY, Kelly G, Gross C, Killelea BK, Mougalian S, Presley C, et al. Information needs of older women with early-stage breast cancer when making radiation therapy decisions. Int J Radiat Oncol Biol Phys. 2017; 98(4): 733-40. PMID: 28366581 DOI: 10.1016/j.ijrobp.2017.02.001
Burton M, Collins KA, Lifford KJ, Brain K, Wyld L, Caldon L, et al. The information and decision support needs of older women (> 75 yrs) facing treatment choices for breast cancer: A qualitative study. Psychooncology. 2015; 24(8): 878-84. PMID: 25534045 DOI: 10.1002/pon.3735
Li W, So WK, Fong DY, Lui LY, Lo JC, Lau SF. The information needs of breast cancer patients in Hong Kong and their levels of satisfaction with the provision of information. Cancer Nurs. 2011; 34(1): 49-57. PMID: 21139454 DOI: 10.1097/NCC.0b013e3181ef77a0
Nader EA, Kourie HR, Ghosn M, Karak FE, Kattan J, Chahine G, et al. Informational needs of women with breast cancer treated with chemotherapy. Asian Pac J Cancer Prev. 2016; 17(4): 1797-800. PMID: 27221855 DOI: 10.7314/apjcp.2016.17.4.1797
Findik UY. The Information needs of women who have undergone breast cancer surgery in the west of Turkey. J Cancer Educ. 2015; 32(3): 432-7. PMID: 26691514 DOI: 10.1007/s13187-015-0965-2
Halbach SM, Ernstmann N, Kowalski C, Pfaff H, Pförtner TK, Wesselmann S, et al. Unmet information needs and limited health literacy in newly diagnosed breast cancer patients over the course of cancer treatment. Patient Educ Couns. 2016; 99(9): 1511-8. PMID: 27378079 DOI: 10.1016/j.pec.2016.06.028
Girgis A, Stacey F, Lee T, Black D, Kilbreath S. Priorities for women with lymphoedema after treatment for breast cancer: Population based cohort study. BMJ, 2011. 342: d3442. PMID: 21693532 DOI: 10.1136/bmj.d3442
Douma KF, Koning CC, Zandbelt LC, de Haes HC, Smets EM. Do patients’ information needs decrease over the course of radiotherapy? Support Care Cancer. 2012; 20(9): 2167-76. PMID: 22081119 DOI: 10.1007/s00520-011-1328-0
Feldman-Stewart D, Madarnas Y, Mates M, Tong C, Grunfeld E, Verma S, et al. Information needs of post-menopausal women with hormone receptor positive early-stage breast cancer considering adjuvant endocrine therapy. Patient Educ Couns. 2013; 93(1): 114-21. PMID: 23747087 DOI: 10.1016/j.pec.2013.03.019
Yeşilyurt DS, Fındık ÜY. Informational needs of postmastectomy patients. J Breast Health. 2016; 12(4): 155-7. PMID: 28331754 DOI: 10.5152/tjbh.2016.3062
Schmidt A, Ernstmann N, Wesselmann S, Pfaff H, Wirtz M, Kowalski C. After initial treatment for primary breast cancer: Information needs, health literacy, and the role of health care workers. Support Care Cancer. 2016; 24(2): 563-71. PMID: 26108171 DOI: 10.1007/s00520-015-2814-6
Kowalski C, Lee SY, Ansmann L, Wesselmann S, Pfaff H. Meeting patients’ health information needs in breast cancer center hospitals-a multilevel analysis. BMC Health Serv Res. 2014; 14(1): 601. PMID: 25422099 DOI: 10.1186/s12913-014-0601-6
Almyroudi A, Degner LF, Paika V, Pavlidis N, Hyphantis T. Decision making preferences and information needs among Greek breast cancer patients. Psychooncology. 2011; 20(8): 871-9. PMID: 20623805 DOI: 10.1002/pon.1798
Halkett GK, Kristjanson LJ, Lobb E, Little J, Shaw T, Taylor M, et al. Information needs and preferences of women as they proceed through radiotherapy for breast cancer. Patient Educ Couns. 2012; 86(3): 396-404. PMID: 21664788 DOI: 10.1016/j.pec.2011.05.010
Schmidt A, Kowalski C, Pfaff H, Wesselmann S, Wirtz M, Ernstmann N. The influence of health literacy on information needs among women newly diagnosed with breast cancer, with special reference to employment status. J Health Commun. 2015; 20(10): 1177-84. PMID: 26086892 DOI: 10.1080/10810730.2015.1018626
Albada A, Ausems MG, Otten R, Bensing JM, van Dulmen S. Use and evaluation of an individually tailored website for counselees prior to breast cancer genetic counseling. J Cancer Educ. 2011; 26(4): 670-81. PMID: 21533850 DOI: 10.1007/s13187-011-0227-x
Obeidat R, Khrais HI. Information needs and disclosure preferences among Jordanian women diagnosed with breast cancer. J Cancer Educ. 2015; 30(1): 94-9. PMID: 24781932 DOI: 10.1007/s13187-014-0665-3
White JA, Matthews E, Wallace L, Poormon L. Informational needs of breast cancer patients related to lymphedema. Rehabilitation Oncology. 2015; 33(1): 58-63.
Bei AW, Lai MT, Choi KC, Li PW, So WK. Factors in the prioritization of information needs among Hong Kong Chinese breast cancer patients. Asia Pac J Oncol Nurs. 2015; 2(3): 176-85. PMID: 27981112 DOI: 10.4103/2347-5625.163620
Ussher JM, Perz J, Gilbert E. Information needs associated with changes to sexual wellbeing after breast cancer. J Adv Nurs. 2013; 69(2): 327-37. PMID: 22500731 DOI: 10.1111/j.1365- 2648.2012.06010.x
Goss C, Deledda G, Bottacini A, Chiodera F, Mazzi MA, Ballarin M, et al. Information needs of female Italian breast cancer patients during their first oncological consultation. Eur J Oncolo Nurs. 2015; 19(5): 451-7. PMID: 25788023 DOI: 10.1016/j.ejon.2015.02.003
Tan AS, Nagler RH, Hornik RC, DeMichele A. Evolving information needs among colon, breast, and prostate cancer survivors: Results from a longitudinal mixed-effects analysis. Cancer Epidemiol Biomarkers Prev. 2015; 24(7): 1071-8. PMID: 25979968 DOI: 10.1158/1055-9965.EPI-15-0041
Bennett MI, Flemming K, Closs SJ. Education in cancer pain management. Curr Opin Support Palliat Care. 2011; 5(1): 20-4. PMID: 21157351 DOI: 10.1097/SPC.0b013e328342c607
Kwok C, White K. Perceived information needs and social support of Chinese-Australian breast cancer survivors. Support Care Cancer. 2014; 22(10): 2651-9. PMID: 24752565 DOI: 10.1007/s00520-014-2252- x
Faller H, Brähler E, Härter M, Keller M, Schulz H, Wegscheider K, et al. Unmet needs for information and psychosocial support in relation to quality of life and emotional distress: A comparison between gynecological and breast cancer patients. Patient Educ Couns. 2017; 100(10): 1934-42. PMID: 28592366 DOI: 10.1016/j.pec.2017.05.031
Cardoso F, Harbeck N, Mertz S, Fenech D. Evolving psychosocial, emotional, functional, and support needs of women with advanced breast cancer: Results from the Count Us, Know Us, Join Us and Here & Now surveys. Breast. 2016; 28: 5-12. PMID: 27161410 DOI: 10.1016/j.breast.2016.04.004
Poon PCM. The information needs, perceptions of communication and decision-making process of cancer patients receiving palliative chemotherapy. Journal of Pain Management. 2012; 5(1): 93-105.
de Bock G, Bonnema J, Zwaan RE, van de Velde CJ, Kievit J, Stiggelbout AM. Patient's needs and preferences in routine follow-up after treatment for breast cancer. Br J Cancer. 2004; 90(6): 1144-50. PMID: 15026793 DOI: 10.1038/sj.bjc.6601655
Adams E, McCann L, Armes J, Richardson A, Stark D, Watson E, et al. The experiences, needs and concerns of younger women with breast cancer: a meta‐ethnography. Psychooncology. 2011; 20(8): 851-61. PMID: 20597066 DOI: 10.1002/pon.1792
Recio-Saucedo A, Gerty S, Foster C, Eccles D, Cutress RI. Information requirements of young women with breast cancer treated with mastectomy or breast conserving surgery: A systematic review. Breast. 2016. 25: 1-13. PMID: 26801410 DOI: 10.1016/j.breast.2015.11.001
Valero-Aguilera B, Bermúdez-Tamayo C, García-Gutiérrez JF, Jiménez-Pernett J, Cózar-Olmo JM, Guerrero-Tejada R, et al. Information needs and Internet use in urological and breast cancer patients. Supportive Care in Cancer. 2014; 22(2): 545-52. PMID: 24122406 DOI: 10.1007/s00520-013-2009-y
Remmers H, Holtgräwe M, Pinkert C. Stress and nursing care needs of women with breast cancer during primary treatment: A qualitative study. Eur J Oncol Nurs. 2010; 14(1): 11-6. PMID: 19748314 DOI: 10.1016/j.ejon.2009.07.002
Fu MR, Xu B, Liu Y, Haber J. ‘Making the best of it’: Chinese women’s experiences of adjusting to breast cancer diagnosis and treatment. J Adv Nurs. 2008; 63(2): 155-65. PMID: 18537844 DOI: 10.1111/j.1365-2648.2008.04647.x
Balneaves LG, Panagiotoglou D, Brazier AS, Lambert LK, Porcino A, Forbes M, et al. Qualitative assessment of information and decision support needs for managing menopausal symptoms after breast cancer. Support Care Cancer. 2016; 24(11): 4567-75. PMID: 27278271 DOI: 10.1007/s00520-016-3296-x
Miyashita M, Ohno S, Kataoka A, Tokunaga E, Masuda N, Shien T, et al. Unmet information needs and quality of life in young breast cancer survivors in Japan. Cancer Nurs. 2015; 38(6): E1–E11. PMID: 25254410 DOI: 10.1097/NCC.0000000000000201
Tautz E, Momm F, Hasenburg A, Guethlin C. Use of complementary and alternative medicine in breast cancer patients and their experiences: A cross-sectional study. Eur J Cancer. 2012; 48(17): 3133-9. PMID: 22633625 DOI: 10.1016/j.ejca.2012.04.021
Hodgkinson K, Butow P, Hobbs KM, Wain G. After cancer: the unmet supportive care needs of survivors and their partners. J Psychosoc Oncol. 2007; 25(4): 89-104. PMID: 18032267 DOI: 10.1300/J077v25n04_06
Hyodo I, Amano N, Eguchi K, Narabayashi M, Imanishi J, Hirai M, et al. Nationwide survey on complementary and alternative medicine in cancer patients in Japan. J Clin Oncol. 2005; 23(12): 2645-54. PMID: 15728227 DOI: 10.1200/JCO.2005.04.126
Huebner J, Follmann M. Complementary medicine in guidelines of the German guideline program in oncology: Comparison of the evidence base between complementary and conventional therapy. J Cancer Res Clin Oncol. 2013; 139(9): 1481-8. PMID: 23817695 DOI: 10.1007/s00432-013-1464-7
Tung HH, Lin CY, Chen KY, Chang CJ, Lin YP, Chou CH. Selfmanagement intervention to improve self‐care and quality of life in heart failure patients. Congest Heart Fail. 2013; 19(4): E9-E16. PMID: 23279120 DOI: 10.1111/chf.12014
Bandura A. Self-efficacy: Toward a unifying theory of behavioral change. Psychol Rev. 1977; 84(2): 191-215. PMID: 847061 DOI: 10.1037//0033-295x.84.2.191
Chiaranai C, Salyer J, Best A. Self-care and quality of life in patients with heart failure. Thai J Nurs Res. 2009; 13(4): 302-17.
Williams SA, Schreier AM. The effect of education in managing side effects in women receiving chemotherapy for treatment of breast cancer. Oncol Nurs Forum. 2004; 31(1): E16-23. PMID: 14722602 DOI: 10.1188/04.ONF.E16-E23
Partridge AH. Cancer survivorship and the young breast cancer patient: addressing the important issues. Oncologist. 2013; 18(8): e19–20. PMID: 23986342 DOI: 10.1634/theoncologist.2013-0300
Koopman C, Butler LD, Classen C, Giese-Davis J, Morrow GR, Westendorf J, et al. Traumatic stress symptoms among women with recently diagnosed primary breast cancer. J Trauma Stress. 2002; 15(4): 277-87. PMID: 12224799 DOI: 10.1023/A:1016295610660
Matchim Y, Armer JM, Stewart BR. Mindfulness-based stress reduction among breast cancer survivors: A literature review and discussion. Oncol Nurs Forum. 2011; 38(2): E61-71. PMID: 21356643 DOI: 10.1188/11.ONF.E61-E71
Günüşen N, İnan FŞ, Üstün B. Experiences of Turkish women with breast cancer during the treatment process and facilitating coping factors. Asian Pac J Cancer Prev. 2013; 14(5): 3143-9. PMID: 23803093
Henderson PD, Gore SV, Davis BL, Condon EH. African American women coping with breast cancer: A qualitative analysis. Oncol Nurs Forum. 2003; 30(4): 641-7. PMID: 12861324 DOI: 10.1188/03.ONF.641-647
Crowley SA, Foley SM, Wittmann D, Jagielski CH, Dunn RL, Clark PM, et al. Sexual health concerns among cancer survivors: testing a novel information-need measure among breast and prostate cancer patients. PMID: 26076657 DOI: 10.1007/s13187-015-0865-5
Pujols Y, Meston CM, Seal BN. The association between sexual satisfaction and body image in women. J Sex Med. 2010; 7(2): 905–16. PMID: 19968771 DOI: 10.1111/j.1743-6109.2009.01604.x
Speer JJ, Hillenberg B, Sugrue DP, Blacker C, Kresge CL, Decker VB, et al. Study of sexual functioning determinants in breast cancer survivors. Breast J. 2005; 11(6): 440-7. PMID: 16297089 DOI: 10.1111/j.1075-122X.2005.00131.x
Burwell SR, Case LD, Kaelin C, Avis NE. Sexual problems in younger women after breast cancer surgery. J Clin Oncol. 2006; 24(18): 2815-21. PMID: 16782919 DOI: 10.1200/JCO.2005.04.2499
Schultz WC, Van de Wiel HB. Sexuality, intimacy, and gynecological cancer. J Sex Marital Ther. 2003; 29(Suppl 1): 121-8. PMID: 12735096 DOI: 10.1080/713847128
Lemieux L, Kaiser S, Pereira J, Meadows LM. Sexuality in palliative care: Patient perspectives. Palliat Med. 2004; 18(7): 630-7. PMID: 15540672 DOI: 10.1191/0269216304pm941oa
Stabile C, Goldfarb S, Baser RE, Goldfrank DJ, Abu-Rustum NR, Barakat RR, et al. Sexual health needs and educational intervention preferences for women with cancer. Breast Cancer Res Treat. 2017; 165(1): 77-84. PMID: 28547655 DOI: 10.1007/s10549-017-4305-6
Gopal RL, Beaver K, Barnett T, Ismail NS. A comparison of the information needs of women newly diagnosed with breast cancer in Malaysia and the United Kingdom. Cancer Nurs. 2005 Mar-Apr;28(2):132-40. PMID: 15815183 DOI: 10.1097/00002820-200503000-00007
Takahashi M, Ohno S, Inoue H, Kataoka A, Yamaguchi H, Uchida Y, et al. Impact of breast cancer diagnosis and treatment on women's sexuality: A survey of Japanese patients. Psychooncology. 2008; 17(9): 901-7. PMID: 18074406 DOI: 10.1002/pon.1297
Gould J, Grassau P, Manthorne J, Gray RE, Fitch MI. ‘Nothing fit me’: Nationwide consultations with young women with breast cancer. Health Expect. 2006; 9(2): 158–73. PMID: 16677195 DOI: 10.1111/j.1369-7625.2006.00383.x
Zeng YC, Liu X, Loke AY, Addressing sexuality issues of women with gynaecological cancer: Chinese nurses’ attitudes and practice. J Adv Nurs. 2012; 68(2): 280-92. PMID: 21658098 DOI: 10.1111/j.1365-2648.2011.05732.x