Information needs and sources of information among cancer patients: a systematic review of research (1980–2003)

Loehrer, 1991, Knowledge and beliefs about cancer in a socioeconomically disadvantaged population, Cancer, 68, 1665, 10.1002/1097-0142(19911001)68:7<1665::AID-CNCR2820680734>3.0.CO;2-3 Hinds, 1995, Functions and preferred methods of receiving information related to radiotherapy. Perceptions of patients with cancer, Cancer Nurs., 18, 374, 10.1097/00002820-199510000-00007 Eakin, 2001, Awareness and barriers to use of cancer support and information resources by HMO patients with breast, prostate, or colon cancer: patient and provider perspectives, Psychooncology, 10, 103, 10.1002/pon.500 Slevin, 1996, Emotional support for cancer patients: what do patients really want?, Br. J. Cancer, 74, 1275, 10.1038/bjc.1996.529 Manfredi, 1993, Patient use of treatment-related information received from the cancer information service, Cancer, 71, 1326, 10.1002/1097-0142(19930215)71:4<1326::AID-CNCR2820710426>3.0.CO;2-K Silliman, 1998, Breast cancer care in older women: sources of information, social support, and emotional health outcomes, Cancer, 83, 706, 10.1002/(SICI)1097-0142(19980815)83:4<706::AID-CNCR11>3.0.CO;2-W Guidry, 1998, Information sources and barriers to cancer treatment by racial/ethnic minority status of patients, J. Cancer Educ., 13, 43 Derdiarian, 1986, Informational needs of recently diagnosed cancer patients, Nurs. Res., 35, 276, 10.1097/00006199-198609000-00005 Derdiarian AK, 1987, Informational needs of recently diagnosed cancer patients. Part II. Method description, Cancer Nurs., 10, 156, 10.1097/00002820-198706000-00005 Jenkins, 2001, Information needs of patients with cancer: results from a large study in UK cancer centres, Br. J. Cancer, 84, 48, 10.1054/bjoc.2000.1573 McIllmurray, 2001, The psychosocial needs of cancer patients: findings from an observational study, Eur. J. Cancer Care, 10, 261, 10.1046/j.1365-2354.2001.00280.x Manfredi, 1993, Cancer patients’ search for information, J. Natl. Cancer Inst. Monogr., 14, 93 Bilodeau, 1996, Information needs, sources of information, and decisional roles in women with breast cancer, Oncol. Nurs. Forum, 23, 691 Degner, 1997, Information needs and decisional preferences in women with breast cancer, JAMA, 277, 1485, 10.1001/jama.277.18.1485 Galloway, 1997, Informational needs of women with a recent diagnosis of breast cancer: development and initial testing of a tool, J. Adv. Nurs., 25, 1175, 10.1046/j.1365-2648.1997.19970251175.x Girgis, 2000, Perceived needs of women diagnosed with breast cancer: rural versus urban location, Aust. N. Z. J Pub. Health, 24, 166, 10.1111/j.1467-842X.2000.tb00137.x Gray, 1998, Information needs of women with metastatic breast cancer, Cancer Prev. Control, 2, 57 Gustafson, 1993, Assessing the needs of breast cancer patients and their families, Qual. Manag. Health Care, 2, 6, 10.1097/00019514-199302010-00005 Lindop, 2001, Evaluating the self-assessed support needs of women with breast cancer, J. Adv. Nurs., 34, 760, 10.1046/j.1365-2648.2001.01806.x Luker, 1995, The information needs of women newly diagnosed with breast cancer, J. Adv. Nurs., 22, 134, 10.1046/j.1365-2648.1995.22010134.x Luker, 1996, Information needs and sources of information for women with breast cancer: a follow-up study, J. Adv. Nurs., 23, 487, 10.1111/j.1365-2648.1996.tb00010.x Rees, 2001, Information-seeking behaviors of women with breast cancer, Oncol. Nurs. Forum, 28, 899 Wallberg, 2000, Information needs and preferences for participation in treatment decisions among Swedish breast cancer patients, Acta Oncol., 39, 467, 10.1080/028418600750013375 Veronesi, 1999, Caring About Women and Cancer (CAWAC): a European survey of the perspectives and experiences of women with female cancers, Eur. J. Cancer, 35, 1667, 10.1016/S0959-8049(99)00170-7 Boudioni, 2001, Do men with prostate or colorectal cancer seek different information and support from women with cancer?, Br. J. Cancer, 85, 641, 10.1054/bjoc.2001.1945 Davison, 1995, Information and decision-making preference of men with prostate cancer, Oncol. Nurs. Forum, 22, 1401 Fitch, 1999, Survivors’ perspectives on the impact of prostate cancer: implications for oncology nurses, Can. Oncol. Nurs. J., 9, 23, 10.5737/1181912x912328 Feldman-Stewart, 2000, What questions do patients with curable prostate cancer want answered?, Med. Decision Making, 20, 7, 10.1177/0272989X0002000102 Gulavita, 2000, Short report: what do men with prostate cancer want to know?, Can. Fam. Physician, 46, 1769 Moore, 1999, The early post-operative concerns of men after radical prostatectomy, J. Adv. Nurs., 29, 1121, 10.1046/j.1365-2648.1999.00995.x Wong, 2000, Men with prostate cancer: influence of psychological factors on informational needs and decision making, J. Psychosom. Res., 49, 13, 10.1016/S0022-3999(99)00109-9 Carlsson, 1998, How patients with gynecological cancer experience the information process, J. Psychosom. Obstet. Gynaecol., 19, 192, 10.3109/01674829809025697 Carlsson, 1999, Qualitative analysis of the questions raised by patients with gynecologic cancers and their relatives in an educational support group, J. Cancer Educ., 14, 41 Fitch, 2001, Perspectives on living with ovarian cancer: older women’s views, Oncol. Nurs. Forum, 28, 1433 Fox, 1999, Male genitourinary cancer sexuality questionnaire, Urol. Nurs., 19, 101 Fitch, 2000, Women’s perspectives regarding the impact of ovarian cancer: implications for nursing, Cancer Nurs., 23, 359, 10.1097/00002820-200010000-00006 Stewart, 2000, Information needs and decisional preferences among women with ovarian cancer, Gynecol. Oncol., 77, 357, 10.1006/gyno.2000.5799 Carlsson, 2000, Cancer patients seeking information from sources outside the health care system, Support Care Cancer, 8, 453 Turk-Charles, 1997, Age differences in information-seeking among cancer patients, Int. J. Aging Human Dev., 45, 85, 10.2190/7CBT-12K3-GA8H-F68R Hopkins, 1986, Information-seeking and adaptational outcomes in women receiving chemotherapy for breast cancer, Cancer Nurs., 9, 256, 10.1097/00002820-198610000-00006 Chen, 2001, Impact of the media and the internet on oncology: survey of cancer patients and oncologists in Canada, J. Clin. Oncol., 19, 4291, 10.1200/JCO.2001.19.23.4291 Mills, 2000, Patients with operable oesophageal cancer: their experience of information-giving in a regional thoracic unit, J. Clin. Nurs., 9, 236, 10.1046/j.1365-2702.2000.00359.x Nelson, 2000, Education about lymphedema prevention and management: a needs assessment of breast cancer survivors in a rural U.S. state, Int. Q. Commun. Health Educ., 19, 229, 10.2190/AN26-PQJ2-VEY0-CP90 Campbell-Forsyth, 1990, Patients’ perceived knowledge and learning needs concerning radiation therapy, Cancer Nurs., 13, 81, 10.1097/00002820-199004000-00002 Cassileth, 1980, Information and participation preferences among cancer patients, Ann. Intern. Med., 92, 832, 10.7326/0003-4819-92-6-832 Fieler, 1996, Information preferences of patients undergoing radiation therapy, Oncol. Nurs. Forum, 23, 1603 Gamble, 1998, Communication and information: the experience of radiotherapy patients, Eur. J. Cancer Care (Engl.), 7, 153, 10.1046/j.1365-2354.1998.00097.x McLoughlin, 1996, The information needs of cancer patients in the Pretoria and Witwatersrand area, Curationis, 19, 31, 10.4102/curationis.v19i2.1320 Sanson-Fisher, 2000, The unmet supportive care needs of patients with cancer. Supportive Care Review Group, Cancer, 88, 226, 10.1002/(SICI)1097-0142(20000101)88:1<226::AID-CNCR30>3.0.CO;2-P Tamburini, 2000, Assessment of hospitalised cancer patients’ needs by the Needs Evaluation Questionnaire, Ann. Oncol., 11, 31, 10.1023/A:1008396930832 Borgers, 1993, The information-seeking behavior of cancer outpatients: a description of the situation, Patient Educ. Couns., 22, 35, 10.1016/0738-3991(93)90087-D Eardley, 1985, Radiotherapy: what are patients’ needs?, Eur. J. Surg. Oncol., 11, 353 Grahn, 1990, Learning to cope and living with cancer. Learning-needs assessment in cancer patient education, Scand. J. Caring Sci., 4, 173, 10.1111/j.1471-6712.1990.tb00069.x Kutner, 1999, Evaluation of the impact of a pre-visit questionnaire for addressing cancer patients’ information needs, J. Cancer Educ., 14, 248 Griffiths, 1995, Patient education needs: opinions of oncology nurses and their patients, Oncol. Nurs. Forum, 22, 139 Jany, 1995, Active living with cancer results of a group support program for cancer patients and their families, Onkologie, 18, 468, 10.1159/000218637 Lauer, 1982, Learning needs of cancer patients: a comparison of nurse and patient perceptions, Nurs. Res., 31, 11, 10.1097/00006199-198201000-00003 Newall, 1987, Presentation of information to cancer patients: a comparison of two centres in the UK and USA, Br. J. Med. Psychol., 60, 127, 10.1111/j.2044-8341.1987.tb02722.x Beaver, 1999, Decision-making role preferences and information needs: a comparison of colorectal and breast cancer, Health Expect., 2, 266, 10.1046/j.1369-6513.1999.00066.x Cawley, 1990, Informational and psychosocial needs of women choosing conservative surgery/primary radiation for early stage breast cancer, Cancer Nurs., 13, 90, 10.1097/00002820-199004000-00003 Graydon, 1997, Information needs of women during early treatment for breast cancer, J. Adv. Nurs., 26, 59, 10.1046/j.1365-2648.1997.1997026059.x Harrison, 1999, Information needs and preference for information of women with breast cancer over a first course of radiation therapy, Patient Educ. Couns., 38, 217, 10.1016/S0738-3991(99)00009-9 Harrison-Woermke, 1993, Perceived informational needs of breast cancer patients receiving radiation therapy after excisional biopsy and axillary node dissection, Cancer Nurs., 16, 449, 10.1097/00002820-199312000-00004 Feldman-Stewart, 2001, The information required by patients with early-stage prostate cancer in choosing their treatment, BJU Int., 87, 218, 10.1046/j.1464-410x.2001.02046.x Meredith, 1995, Comparison of patients’ needs for information on prostate surgery with printed materials provided by surgeons, Qual. Health Care, 4, 18, 10.1136/qshc.4.1.18 Gray, 1997, Results of a survey of Canadian men with prostate cancer, Can. J. Urol., 4, 359 Davidson, 1999, Lung cancer treatment decisions: patients’ desires for participation and information, Psychooncology, 8, 511, 10.1002/(SICI)1099-1611(199911/12)8:6<511::AID-PON415>3.0.CO;2-T Fitch, 1999, Canadian women’s perspectives on ovarian cancer, Cancer Prev. Control., 3, 52 Knowles, 1999, The perceived information needs of patients receiving adjuvant chemotherapy for surgically resected colorectal cancer, Eur. J. Oncol. Nurs., 3, 208, 10.1016/S1462-3889(99)81332-5 Bonevski, 1999, Assessing the perceived needs of patients attending an outpatient melanoma clinic, J. Psychosoc. Oncol., 17, 101, 10.1300/J077v17n03_06 Benedict, 2001, Factors influencing choice between mastectomy and lumpectomy for women in the Carolinas, J. Surg. Oncol., 76, 6, 10.1002/1096-9098(200101)76:1<6::AID-JSO1002>3.0.CO;2-F Nair, 2000, Sources of information used by patients to learn about chemotherapy side effects, J. Cancer Educ., 15, 19 Perez, 1995, The information needs of patients with breast cancer, Aust. N. Z. J. Med., 25, 521, 10.1111/j.1445-5994.1995.tb01499.x Sahay, 2000, A qualitative study of patient perspectives on colorectal cancer, Cancer Pract., 8, 38, 10.1046/j.1523-5394.2000.81012.x Schapira, 1999, Information sources and professional consultations sought by men newly diagnosed as having prostate cancer, J. Cancer Educ., 14, 243 Ashbury, 1998, A Canadian survey of cancer patients’ experiences: are their needs being met?, J. Pain Symptom Manage., 16, 298, 10.1016/S0885-3924(98)00102-X Muha, 1998, The use and selection of sources in information seeking: the Cancer Information Service experience. Part 8, J. Health Commun., 3, 109, 10.1080/108107398127292 Whelan, 1997, The supportive care needs of newly diagnosed cancer patients attending a regional cancer center, Cancer, 80, 1518, 10.1002/(SICI)1097-0142(19971015)80:8<1518::AID-CNCR21>3.0.CO;2-7 Hughes, 2000, Information needs of elderly postsurgical cancer patients during the transition from hospital to home, J. Nurs. Scholarsh, 32, 25, 10.1111/j.1547-5069.2000.00025.x van der, 2000, Relating information-needs to the cancer experience. 1. Jenny’s story: a cancer narrative, Eur. J. Cancer Care (Engl.), 9, 41, 10.1046/j.1365-2354.2000.00191.x van der, 2000, Relating information needs to the cancer experience. 2. Themes from six cancer narratives, Eur. J. Cancer Care (Engl.), 9, 48, 10.1046/j.1365-2354.2000.00190.x van Harteveld, 1997, Home visits by community nurses for cancer patients after discharge from hospital: an evaluation study of the continuity visit, Cancer Nurs., 20, 105, 10.1097/00002820-199704000-00005 Stalker, 1989, Supportive activities requested by survivors of cancer, J. Psychosoc. Oncol., 7, 21, 10.1300/J077v07n04_02 Sullivan, 1993, Living with cancer: self-identified needs of rural dwellers, Fam. Commun. Health, 16, 41, 10.1097/00003727-199307000-00008 Boman, 1997, Needs as expressed by women after breast cancer surgery in the setting of a short hospital stay, Scand. J. Caring. Sci., 11, 25, 10.1111/j.1471-6712.1997.tb00427.x Feather, 1988, Postmastectomy educational needs and social support, J. Cancer Educ., 3, 135, 10.1080/08858198809527927 Gray, 1998, The information needs of well, longer-term survivors of breast cancer, Patient Educ. Couns., 33, 245, 10.1016/S0738-3991(98)00024-X Wilson, 2000, Meeting the needs of rural breast cancer survivors: what still needs to be done?, J. Womens Health Gender-Based Med., 9, 667, 10.1089/15246090050118198 Steginga, 2001, The supportive care needs of men with prostate cancer, Psychooncology, 10, 66, 10.1002/1099-1611(200101/02)10:1<66::AID-PON493>3.3.CO;2-Q Corney, 1993, Psychosexual dysfunction in women with gynaecological cancer following radical pelvic surgery, Br. J. Obstet. Gynaecol., 100, 73, 10.1111/j.1471-0528.1993.tb12955.x Corney, 1992, The care of patients undergoing surgery for gynaecological cancer: the need for information, emotional support and counseling, J. Adv. Nurs., 17, 667, 10.1111/j.1365-2648.1992.tb01962.x Galloway, 1996, Uncertainty, symptom distress, and information needs after surgery for cancer of the colon, Cancer Nurs., 19, 112, 10.1097/00002820-199604000-00005 Johansson, 1992, Aspects of patient care. Interviews with relapse-free testicular cancer patients in Stockholm, Cancer Nurs., 15, 54 Galloway, 1993, Perceived information needs and affect of symptoms on activities after surgery for lung cancer, Can. Oncol. Nurs. J., 3, 116, 10.5737/1181912x33116119 Fitch, 2000, Men’s perspectives on the impact of prostate cancer: implications for oncology nurses, Oncol. Nurs. Forum, 27, 1255 Meredith, 1996, Information needs of cancer patients in west Scotland: cross sectional survey of patients’ views, BMJ, 313, 724, 10.1136/bmj.313.7059.724 Hammick, 1998, Knowledge and perception regarding radiotherapy and radiation in patients receiving radiotherapy: a qualitative study, Eur. J. Cancer Care (Engl.), 7, 103, 10.1046/j.1365-2354.1998.00072.x Brandt, 1991, Informational needs and selected variables in patients receiving brachytherapy, Oncol. Nurs. Forum, 18, 1221 Kutner, 1999, Information needs in terminal illness, Soc. Sci. Med., 48, 1341, 10.1016/S0277-9536(98)00453-5 Boberg, 2003, Assessing the unmet information, support and care delivery needs of men with prostate cancer, Patient Educ. Couns., 49, 223, 10.1016/S0738-3991(02)00183-0 Davis, 2003, Assessing the practical and psychosocial needs of rural women with early breast cancer in Australia, Soc. Work Health Care, 36, 25, 10.1300/J010v36n03_02 Friis, 2003, The patient’s perspective: a qualitative study of acute myeloid leukaemia patients’ need for information and their information-seeking behavior, Support Care Cancer, 11, 162, 10.1007/s00520-002-0424-6 Iconomou, 2002, Information needs and awareness of diagnosis in patients with cancer receiving chemotherapy: a report from Greece, Palliative Med., 16, 315, 10.1191/0269216302pm574oa Kakai, 2003, Ethnic differences in choices of health information by cancer patients using complementary and alternative medicine: an exploratory study with correspondence analysis, Soc. Sci. Med., 56, 851, 10.1016/S0277-9536(02)00086-2 Lock, 2002, Information needs of cancer patients receiving chemotherapy in an ambulatory-care setting, CJNR, 34, 83 Maly, 2003, Health care disparities in older patients with breast carcinoma: informational support from physicians, Cancer, 87, 1517, 10.1002/cncr.11211 Mills, 2002, Cancer patients’ sources of information: use and quality issues, Psycho-Oncology, 11, 371, 10.1002/pon.584 Raupach, 2002, Information and support for women following the primary treatment of breast cancer, Health Expect., 5, 289, 10.1046/j.1369-6513.2002.00191.x Tamburini, 2003, Cancer patients’ needs during hospitalisation: a quantitative and qualitative study, BMC Cancer, 3, 12, 10.1186/1471-2407-3-12 Templeton, 2002, Informational needs of men with prostate cancer on hormonal manipulation therapy, Patient Educ. Couns., 49, 243, 10.1016/S0738-3991(02)00181-7 Thewes, 2003, The fertility- and menopause-related information needs of younger women with a diagnosis of breast cancer: a qualitative study, Psycho-Oncology, 12, 500, 10.1002/pon.685 Wong, 2002, What do patients living with advanced cancer and their carers want to know?—a needs assessment, Support Care Cancer, 10, 408, 10.1007/s00520-002-0354-3 Damian, 1991, Letters to patients: improving communication in cancer care, Lancet, 338, 923, 10.1016/0140-6736(91)91782-P Johnson, 1988, Reducing the negative impact of radiation therapy on functional status, Cancer, 61, 46, 10.1002/1097-0142(19880101)61:1<46::AID-CNCR2820610109>3.0.CO;2-2 Rainey, 1985, Effects of preparatory patient education for radiation oncology patients, Cancer, 56, 1056, 10.1002/1097-0142(19850901)56:5<1056::AID-CNCR2820560516>3.0.CO;2-Z Hogben, 1989, Getting it taped: the “bad news” consultation with cancer patients, Br. J. Hops. Med., 41, 330 Johnson, 1991, The use of recorded interviews to enhance physician-patient communication, J. Cancer Educ., 6, 99, 10.1080/08858199109528098 Reynolds, 1998, Cancer and communication: information-giving in an oncology clinic, Br. Med. J. (Clin. Res. Ed.), 282, 1449, 10.1136/bmj.282.6274.1449 Arora, 2002, Barriers to information access, perceived health competence, and psychosocial health outcomes: test of a mediation model in a breast cancer sample, Patient Educ. Couns., 47, 37, 10.1016/S0738-3991(01)00170-7 Rees, 2000, The information needs and source preferences of women with breast cancer and their family members: a review of the literature published between 1988 and 1998, 31, 833 Echlin, 2002, Information needs and information seeking behaviors of men with prostate cancer and their partners: a review of literature, Cancer Nurs., 25, 35, 10.1097/00002820-200202000-00008 Krantz, 1980, Assessment of preferences for self-treatment and information in health care, J. Pers. Soc. Psychol., 39, 977, 10.1037/0022-3514.39.5.977 Foot, 1995, Measuring the unmet needs of people living with cancer, Cancer Forum, 19, 131 Chalmers, 2001, Information and support needs of women with primary relatives with breast cancer: development of the Information and Support Needs Questionnaire, J. Adv. Nurs., 35, 497, 10.1046/j.1365-2648.2001.01866.x Lazarus, 1992, Coping with the stress of illness, WHO Regul. Publ. Eur. Ser., 44, 11 James, 1999, Preferences for different sources of information about cancer, Patient Educ. Couns., 37, 273, 10.1016/S0738-3991(99)00031-2 Gustafson, 2002, CHESS: 10 years of research and development in consumer health informatics for broad populations, including the underserved, Int. J. Med. Inf., 65, 169, 10.1016/S1386-5056(02)00048-5