The Information Needs of New Radiotherapy Patients: How to Measure? Do They Want to Know Everything? And if Not, Why?

Stewart, 1995, Effective physician-patient communication and health outcomes, a review, Can Med Assoc J, 152, 1423 Butow, 1997, The dynamics of change, cancer patients’ preferences for information, involvement and support, Ann Oncol, 8, 857, 10.1023/A:1008284006045 Blanchard, 1988, Information and decision-making preferences of hospitalized adult cancer patients, Soc Sci Med, 27, 1139, 10.1016/0277-9536(88)90343-7 Jenkins, 2001, Information needs of patients with cancer, results from a large study in UK cancer centres, Brit J Cancer, 84, 48, 10.1054/bjoc.2000.1573 Cox, 2006, Information needs and experiences, an audit of UK cancer patients, Eur J Oncol Nurs, 10, 263, 10.1016/j.ejon.2005.10.007 Murtagh, 2006, Evaluation and ethical review of a tool to explore patient preferences for information and involvement in decision making, J Med Ethics, 32, 311, 10.1136/jme.2005.012484 Meredit, 1996, Information needs of cancer patients in west Scotland, cross sectional survey of patients’ views, Brit Med J, 313, 724, 10.1136/bmj.313.7059.724 Hagerty, 2004, Cancer patient preferences for communication of prognosis in the metastatic setting, J Clin Oncol, 22, 1721, 10.1200/JCO.2004.04.095 Fallowfield, 1995, No news is not good news: Information preferences of patients with cancer, Psycho-Oncol, 4, 197, 10.1002/pon.2960040305 Ong, 1999, Cancer patients’ coping styles and doctor-patient communication, Psycho-Oncol, 8, 155, 10.1002/(SICI)1099-1611(199903/04)8:2<155::AID-PON350>3.0.CO;2-A Lagarde, 2008, Patient preferences for the disclosure of prognosis after esophagectomy for cancer with curative intent, Ann Sur Oncol, 15, 3289, 10.1245/s10434-008-0068-y Koedoot, 2003, Palliative chemotherapy or best supportive care? A prospective study explaining patients’ treatment preference and choice, Brit J Cancer, 89, 2219, 10.1038/sj.bjc.6601445 Elkin, 2007, Desire for information and involvement in treatment decisions. Elderly cancer patients’ preferences and their physicians’ perceptions, J Clin Oncol, 25, 5275, 10.1200/JCO.2007.11.1922 Gamble, 1998, Communication and information, the experience of radiotherapy patients, Eur J Cancer Care, 7, 153, 10.1046/j.1365-2354.1998.00097.x Leydon, 2000, Cancer patients’ information needs and information seeking behaviour, in depth interview study, Brit Med J, 320, 909, 10.1136/bmj.320.7239.909 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 Sakalla, 2004, Patients’ need for information about cancer therapy, OncNurs Forum, 31, 313 Cassileth, 1980, Information and participation preferences among cancer patients, Ann Intern Med, 92, 832, 10.7326/0003-4819-92-6-832 Bock de, 2004, Patient’s needs and preferences in routine follow-up after treatment for breast cancer, Brit J Cancer, 90, 1144, 10.1038/sj.bjc.6601655 Dale, 2004, Information needs and prostate cancer, The development of a systematic means of identification, BJU Int, 94, 63, 10.1111/j.1464-410X.2004.04902.x Bruera, 2000, Attitudes and beliefs of palliative care physicians regarding communication with terminally ill cancer patients, Palliative Med, 14, 287, 10.1191/026921600674582192 Guidry, 1997, The role of informal and formal social support networks for patients with cancer, Cancer Pract, 5, 241 Buzaglo, 2007, An internet method to assess cancer patient information needs and enhance doctor-patient communication, a pilot study, J Cancer Educ, 22, 233, 10.1007/BF03174122 Cassileth, 1998, Patient and physician delay in melanoma diagnosis, J Am Acad Dermatol, 8, 591 Galloway, 1997, Discharge information needs and symptom distress after abdominal aortic surgery, Can J Cardiovasc Nurs, 8, 9 Kaplowitz, 2002, Cancer patients’ desire for communication of prognosis information, Health Commun, 14, 221, 10.1207/S15327027HC1402_4 Kvale, 2007, Do cancer patients always want to talk about difficult emotions? A qualitative study of cancer inpatients communication needs, Eur J Oncol Nurs, 11, 320, 10.1016/j.ejon.2007.01.002 Vos, 2010, Denial and physical outcomes in lung cancer patients, a longitudinal study, Lung Cancer, 67, 237, 10.1016/j.lungcan.2009.04.003 Halkett, 2009, How do radiation oncology health professionals inform breast cancer patients about the medical and technical aspects of their treatment?, Radiother Oncol, 90, 153, 10.1016/j.radonc.2008.05.017 Barnett, 2004, Information given to patients about adverse effects of radiotherapy: a survey of patients’ views, Clin Oncol (R Coll Radiol), 16, 479, 10.1016/j.clon.2004.06.013 Haes de, 2006, Dilemmas in patient-centeredness and shared decision making. A case for vulnerability, Patient Educ Couns, 62, 291, 10.1016/j.pec.2006.06.012 Franssen, 2007, Measuring cancer patients’ information needs: what do patients want to know prior to undergoing radiotherapy? [abstract], Psycho-Oncol, 16, S65 Zuuren van, 1996, Coping with medical threat, an evaluation of the Threatening Medical Situations Inventory (TMSI), Pers Indiv Differ, 21, 21, 10.1016/0191-8869(96)00029-3 Chew, 2004, Brief questions to identify patients with inadequate health literacy, Fam Med, 36, 588 Schwartz, 1997, The role of numeracy in understanding the benefit of screening mammography, Ann Intern Med, 127, 966, 10.7326/0003-4819-127-11-199712010-00003 Zigmond, 1983, The hospital anxiety and depression scale, Acta Psychiat Scand, 67, 361, 10.1111/j.1600-0447.1983.tb09716.x Spielberger, 1983 Horowitz, 1979, Impact of event scale, a measure of subjective stress, Psychosom Med, 41, 209, 10.1097/00006842-197905000-00004 Cohen, 1988 Adler, 2009, Patient information in radiation oncology: A cross-sectional pilot study using the EORTC QLQ-INFO26 module, Radiather Oncol, 28, 4 Kiesler, 2006, Optimal matches of patient preferences for information, decision-making and interpersonal behavior, evidence, models and interventions, Pat Educ Couns, 61, 319, 10.1016/j.pec.2005.08.002 Dimoska, 2008, Can a “prompt list” empower cancer patients to ask relevant questions?, Cancer, 113, 225, 10.1002/cncr.23543 Hoeven ter CL, Zandbelt LC, Franssen SJ, et al. Measuring cancer patients’ reasons for their information preference: Construction of the Considerations Concerning Cancer information (CCCI) questionnaire. Psycho-Oncol, in press. Manning, 2006, Health literacy, more choice, but do cancer patients have the skills to decide?, Eur J Cancer Care, 15, 448, 10.1111/j.1365-2354.2006.00687.x