Evaluation of the Information Needs of Breast Cancer Patients in the Internet
AbstractBackground: Breast cancer is a serious concern for women health. Providing enough information to these patients will increase awareness, level of participation and improve quality of care. To provide information through the internet, identifying information needs is essential. The purpose of this study was to identify information needs that can be available through Internet for women with breast cancer based on their perspectives.Method: 120 women with breast cancer, who were familiar with the internet, entered to the study with convenient sampling method from Cancer Institute of Imam Khomeini hospital located in Tehran. The questionnaire was designed in seven areas: disease, treatment, daily activities, sexual health, and impact of disease on the family and private life, disease acceptance and self-image as well as other educational content based on a literature review and six sample portals. Descriptive statistics (frequency, mean and standard deviation) were used to analyze data by SPSS software.Result: The information content needed by patients on the internet, was in seven areas: Treatment (mean= 4.62 out of 5), daily activity (mean= 4.51 out of 5), disease (mean= 4.42 out of 5), disease acceptance and self-image (mean= 4.37 out of 5), the effect of disease on private life (mean= 4.21 out of 5) ,sexual health (mean= 4.2 out of 5) and other educational content( mean=4/55 out of 5). Conclusion: The need for information in the field of treatment is the most important needs of patients. They are interested in accessing through the online medium that provides them with information about cancer, decision making and treatment management. The care team can improve quality of care by providing information through the internet and portals.
Stephens PA, Maryjo Osowski M, Fidale MS, Cathy Spagnoli RN B. Identifying the educational needs and concerns of newly diagnosed patients with breast cancer after surgery. Clinical Journal of Oncology Nursing. 2008;12(2):253.
Andic S, Karayurt O. Determination of information and support needs of first degree relatives of women with breast cancer. Asian Pacific Journal of Cancer Prevention. 2012;13(9):4491-9.
society Ac. Breast cancer threatment 2017 [Available from: https://www.cancer.org/cancer/breast-cancer/treatment.html.
Mohebbi E, Nahvijou A, Hadji M, Rashidian H, Seyyedsalehi MS, Nemati S, et al. Iran Cancer Statistics in 2012 and projection of cancer incidence by 2035. Basic & Clinical Cancer Research. 2018;9(3).
Taghavi A, Fazeli Z, Vahedi M, Baghestani AR, Pourhoseingholi A, Barzegar F, et al. Increased trend of breast cancer mortality in Iran. Asian Pacific Journal of Cancer Prevention. 2012;13(1):367-70.
Obeidat R, Khrais HI. Information needs and disclosure preferences among Jordanian women diagnosed with breast cancer. Journal of Cancer Education. 2015;30(1):94-9.
Kaur N, Miglani R, Grover R. Information and rehabilitation needs of Indian breast cancer patients: report of a cross-sectional study. Indian journal of cancer. 2014;51(3):262.
Shahsavari H, Matory P, Zare Z, Taleghani F, Kaji MA. Effect of self-care education on the quality of life in patients with breast cancer. Journal of Education and Health Promotion. 2015;4.
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.
Taleghani F, Bahrami M, Loripoor M, Yousefi A. Empowerment needs of women with breast cancer: a qualitative study. Iranian Red Crescent Medical Journal. 2014;16(11).
Obeidat RF, Lally RM. Health-related information exchange experiences of Jordanian women at breast cancer diagnosis. Journal of Cancer Education. 2014;29(3):548-54.
Fogel J, Albert SM, Schnabel F, Ditkoff BA, Neugut AI. Use of the Internet by women with breast cancer. Journal of medical Internet research. 2002;4(2).
Tuna A, Avdal EU, Yucel SC, Dal NA, Dicle A, Ozkan A, et al. Effectiveness of online education in teaching breast self-examination. Asian Pac J Cancer Prev. 2014;15(7):3227-31.
Villarreal‐Garza C, Platas A, Martinez‐Cannon BA, Bargalló‐Rocha E, Aguilar‐González CN, Ortega‐Leonard V, et al. Information Needs and Internet Use of Breast Cancer Survivors in Mexico. The Breast Journal. 2016.
Ryhänen AM, Siekkinen M, Rankinen S, Korvenranta H, Leino-Kilpi H. The effects of Internet or interactive computer-based patient education in the field of breast cancer: a systematic literature review. Patient education and counseling. 2010;79(1):5-13.
Osborn CY, Mayberry LS, Wallston KA, Johnson KB, Elasy TA. Understanding patient portal use: implications for medication management. Journal of medical Internet research. 2013;15(7):e133.
Arroyo B, Tillinghast DS. Information Needs and Self-Efficacy: Internet Use by Women with Breast Cancer. Social Marketing Quarterly. 2009;15(1_suppl):102-17.
Dunbar A, Tai E, Nielsen DB, Shropshire S, Richardson LC. Preventing infections during cancer treatment: development of an interactive patient education website. Clinical journal of oncology nursing. 2014;18(4):426.
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. European Journal of Oncology Nursing. 2015;19(5):451-7.
Lee C-j, Gray SW, Lewis N. Internet use leads cancer patients to be active health care consumers. Patient education and counseling. 2010;81:S63-S9.
Neumann M, Wirtz M, Ernstmann N, Ommen O, Längler A, Edelhäuser F, et al. Identifying and predicting subgroups of information needs among cancer patients: an initial study using latent class analysis. Supportive Care in Cancer. 2011;19(8):1197-209.
Wiggers JH, Donovan KO, Redman S, Sanson‐Fisher RW. Cancer patient satisfaction with care. Cancer. 1990;66(3):610-6.
Yeşilyurt DS, Fındık ÜY. Informational Needs of Postmastectomy Patients. Breast. 2016;20:27.8.
Lei CP, 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.
Li PW, So WK, Fong DY, Lui LY, Lo JC, Lau S. The information needs of breast cancer patients in Hong Kong and their levels of satisfaction with the provision of information. Cancer nursing. 2011;34(1):49-57.
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 Education and Counseling. 2017.
Wang S-Y, 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. International Journal of Radiation Oncology* Biology* Physics. 2017.
Kuijpers W, Groen WG, Aaronson NK, van Harten WH. A systematic review of web-based interventions for patient empowerment and physical activity in chronic diseases: relevance for cancer survivors. Journal of medical Internet research. 2013;15(2).
Popescu BL. Designing a consumer cancer information web portal Cowlitz Cancer Awareness, Resource & Education (CARE). 2010.
Yi M, Cho J, Noh D-Y, Song M-R, Lee J-L, Juon H-S. Informational needs of Korean women with breast cancer: cross-cultural adaptation of the Toronto informational needs questionnaire of breast cancer. Asian nursing research. 2007;1(3):176-86.
Atefeh Ardestani M, Mehrzad Mirzania M, Habibollah Mahmoodzadeh M, Mahdi Aghili M, Kazem Zendehdel M. Travel Burden and Clinical Profile of Cancer Patients Admitted to the Cancer Institute of Iran in 2012. Archives of Iranian medicine. 2017;20(3):147.
Habibi A. Applied training of spss 1386. 189 p.
Kimiafar K, Sarbaz M, Sales SS, Esmaeili M, Ghazvini ZJ. Breast cancer patients' information needs and information-seeking behavior in a developing country. The Breast. 2016;28:156-60.
Maddock C, Lewis I, Ahmad K, Sullivan R. Online information needs of cancer patients and their organizations. ecancermedicalscience. 2011;5:235.
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 education and counseling. 2013;93(1):114-21.
Poon PCM, FHKCR F. The information needs, perceptions of communication and decision-making process of cancer patients receiving palliative chemotherapy. Journal of Pain Management. 2012;5(1):93.
McGuire A, Brown JA, Malone C, McLaughlin R, Kerin MJ. Effects of age on the detection and management of breast cancer. Cancers. 2015;7(2):908-29.
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. The Breast. 2016;25:1-13.
Remmers H, Holtgräwe M, Pinkert C. Stress and nursing care needs of women with breast cancer during primary treatment: a qualitative study. European Journal of Oncology Nursing. 2010;14(1):11-6.
Bennett MI, Flemming K, Closs SJ. Education in cancer pain management. Current opinion in supportive and palliative care. 2011;5(1):20-4.
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. Psycho‐Oncology. 2015;24(8):878-84.
Muhamad M, Afshari M, Mohamed NA. Internet use and breast cancer survivors. TOJET: The Turkish Online Journal of Educational Technology. 2011;10(4).
Matsuyama RK, Kuhn LA, Molisani A, Wilson-Genderson MC. Cancer patients’ information needs the first nine months after diagnosis. Patient education and counseling. 2013;90(1):96-102.
Lee YM, Francis K, Walker J, Lee SM. What are the information needs of Chinese breast cancer patients receiving chemotherapy? European Journal of Oncology Nursing. 2004;8(3):224-33.
Beaver K, Booth K. Information needs and decision-making preferences: comparing findings for gynaecological, breast and colorectal cancer. European Journal of Oncology Nursing. 2007;11(5):409-16.
Vogel BA, Bengel J, Helmes AW. Information and decision making: patients’ needs and experiences in the course of breast cancer treatment. Patient Education and Counseling. 2008;71(1):79-85.
Bei AW, Lai M, Choi K, Li PW, So WK. Factors in the prioritization of information needs among Hong Kong Chinese breast cancer patients. Asia-Pacific journal of oncology nursing. 2015;2(3):176.
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. Journal of Advanced Nursing. 2008;63(2):155-65.
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. Journal of Cancer Education. 2016;31(3):588-94.
Liao M-N, Chen S-C, Lin Y-C, Chen M-F, Wang C-H, Jane S-W. Education and psychological support meet the supportive care needs of Taiwanese women three months after surgery for newly diagnosed breast cancer: A non-randomised quasi-experimental study. International journal of nursing studies. 2014;51(3):390-9.
Günüşen NP, İnan FŞ, Üstün B. Experiences of Turkish women with breast cancer during the treatment process and facilitating coping factors. Asian Pacific Journal of Cancer Prevention. 2013;14(5):3143-9.
Matchim Y, Armer JM, Stewart BR, editors. Mindfulness-based stress reduction among breast cancer survivors: a literature review and discussion. Oncology nursing forum; 2011.
Rice RE. Influences, usage, and outcomes of Internet health information searching: multivariate results from the Pew surveys. International journal of medical informatics. 2006;75(1):8-28.
Foster C, Roffe L. An exploration of the internet as a self-management resource. Journal of Research in Nursing. 2009;14(1):13-24.
von Meyenfeldt M. Cancer-associated malnutrition: an introduction. European Journal of Oncology Nursing. 2005;9:S35-S8.
Khoshnevis N, Ahmadizar F, Alizadeh M, Akbari M. Nutritional assessment of cancer patients in Tehran, Iran. Asian Pacific Journal of Cancer Prevention. 2012;13(4):1621-6.
Leandro-Merhi VA, de Aquino JLB, Sales Chagas JF. Nutrition status and risk factors associated with length of hospital stay for surgical patients. Journal of Parenteral and Enteral Nutrition. 2011;35(2):241-8.
Genton L, Kyle UG, Majno SB, Pichard C. Body composition changes in breast cancer patients during curative radiation therapy. e-SPEN, the European e-Journal of Clinical Nutrition and Metabolism. 2006;1(1):2-8.
Leandro‐Merhi VA, Aquino JLB, Sales Chagas JF. Nutrition status and risk factors associated with length of hospital stay for surgical patients. Journal of Parenteral and Enteral Nutrition. 2011;35(2):241-8.
Williams SA, Schreier AM, editors. The effect of education in managing side effects in women receiving chemotherapy for treatment of breast cancer. Oncology Nursing Forum; 2004.
Aranda S, Jefford M, Yates P, Gough K, Seymour J, Francis P, et al. Impact of a novel nurse-led prechemotherapy education intervention (ChemoEd) on patient distress, symptom burden, and treatment-related information and support needs: results from a randomised, controlled trial. Annals of oncology. 2011;23(1):222-31.
Heydarnejad M, Hassanpour DA, Solati DK. Factors affecting quality of life in cancer patients undergoing chemotherapy. African health sciences. 2011;11(2).
Roozbahani N DS. Investigating the effect of education by using the theory-based multimedia designed to promote breast cancer prevention behaviors in women over 35 years Ministry of Health and Medical Education - Arak University of Medical Sciences - Faculty of Health; 2014.
Osborn CY, Rosenbloom ST, Stenner SP, Anders S, Muse S, Johnson KB, et al. MyHealthAtVanderbilt: policies and procedures governing patient portal functionality. Journal of the American Medical Informatics Association. 2011;18(Supplement 1):i18-i23.
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 & Obstetrics. 2010;109(2):118-20.
Pujols Y, Meston CM, Seal BN. The association between sexual satisfaction and body image in women. The journal of sexual medicine. 2010;7(2pt2):905-16.
Manderson L, Stirling L. The absent breast: speaking of the mastectomied body. Feminism & Psychology. 2007;17(1):75-92.
Speer JJ HB, Sugrue DP, et al. Study of sexual functioning
determinants in breast cancer survivors. Breast J. 2005;11(6):440-7.
Schultz W, Van de Wiel H. Sexuality, intimacy, and gynecological cancer. J Sex Marital Ther. 2003;29(Suppl 1):121-8.
Lemieux L, Kaiser S, Pereira J, Meadows LM. Sexuality in palliative care: patient perspectives. Palliative medicine. 2004;18(7):630-7.
Albada A, van Dulmen S, Lindhout D, Bensing JM, Ausems MG. A pre-visit tailored website enhances counselees’ realistic expectations and knowledge and fulfils information needs for breast cancer genetic counselling. Familial cancer. 2012;11(1):85-95.
McNamara M, Arnold C, Sarma K, Aberle D, Garon E, Bui AA. Patient portal preferences: perspectives on imaging information. Journal of the Association for Information Science and Technology. 2015;66(8):1606-15.
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 research protocols. 2015;4(1):e14.
Albada A, Van Dulmen S, Otten R, Bensing JM, Ausems MG. Development of E-info geneca: A website providing computer-tailored information and question prompt prior to breast cancer genetic counseling. Journal of genetic counseling. 2009;18(4):326-38.
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. Journal of Cancer Education. 2011;26(4):670-81.
Lyons EJ. The underrepresentation of African Americans in online cancer support groups. Journal of the National Medical Association. 2008;100(6):705.
Pereira JL, Koski S, Hanson J, Bruera ED, Mackey JR. Internet usage among women with breast cancer: an exploratory study. Clinical breast cancer. 2000;1(2):148-53.
Halbach SM, Ernstmann N, Kowalski C, Pfaff H, Pförtner T-K, Wesselmann S, et al. Unmet information needs and limited health literacy in newly diagnosed breast cancer patients over the course of cancer treatment. Patient education and counseling. 2016;99(9):1511-8.