An exploratory study on the information needs of prostate cancer patients and their partners

The aim of this study is to explore the information needs of men with prostate cancer and their partners retrospectively at various points in the treatment process. An online questionnaire was used to collect information from men with prostate cancer and their partners about information needs, and when these developed. Readers of a Prostate Care Cookbook and members of a Prostate Cancer Charity were invited to participate: 73 men with prostate cancer and 25 part ners completed the questionnaire. Responses showed that participants develop their information needs close to diagnosis. Less educated men with prostate cancer and partners developed their needs closer to the time after diagnosis than those with higher education. Partners devel op an interest on information related to treatment and interaction ear lier than patients. Patients prioritised treatment and disease-specific information. Patients and partners differ in how their information needs develop. Medical information is prioritized by patients as opposed to practical information by partners. Health care provision can be tailored to meet the different needs of prostate cancer patients and their partners at different times in the treatment process.
1. Adams, E., Boulton, M., & Watson, E. (2009). The information needs of partners and family members of cancer patients: a systematic literature review. Patient Education and Counseling, 77, 179-186.
2. Baider, L., Ever-Hadani, P., Goldzweig, G., Wygoda, M.R., & Peretz, T. (2003). Is perceived family support a relevant variable in psychological distress?: A sample of prostate and breast cancer couples. Journal of Psychosomatic Research, 55, 453-460.
3. Boberg, E.W., Gustafson, D.H., Hawkins, R.P., Offord, K.P., Koch, C., Wen, K.Y., ..., Salner, A. (2003). Assessing the unmet information, support and care delivery needs of men with prostate cancer. Patient Education and Counseling, 49, 233-242.
4. Cliff, A.M., & MacDonagh, R.P. (2000). Psychosocial morbidity in prostate cancer: II. A comparison of patients and partners. BJU International, 86, 834-839.
5. Couper, J., Bloch, S., Love, A., Macvean, M., Duchesne, G.M., & Kissane, D. (2006). Psychosocial adjustment of female partners of men with prostate cancer: a review of the literature. Psychooncology, 15, 937-953.
6. Friis, L.S., Elverdam, B., & Schmidt, K.G. (2003). The patient’s perspective. Supportive Care in Cancer, 11, 162-170.
7. Gray, R.E., Fitch, M.I., Phillips, C., Labrecque, M., & Klotz, L. (1999). Presurgery experiences of prostate cancer patients and their spouses. Cancer Practice, 7, 130-135.
8. Hathaway, D. (1986). Effect of preoperative instruction on postoperative outcomes: a meta-analysis. Nursing Research, 35, 269-275.
9. Hervouet, S., Savard, J., Simard, S., Ivers, H., Laverdière, J., Vigneault, E., ..., Lacombe, L. (2005). Psychological functioning associated with prostate cancer: cross-sectional comparison of patients treated with radiotherapy, brachytherapy, or surgery. Journal of Pain and Symptom Management, 30, 474-484.
10. Karademas, E.C., & Giannousi, Z. (2013). Representations of control and psychological symptoms in couples dealing with cancer: a dyadic-regulation approach. Psychology & Health, 28, 67-83.
11. Kornblith, A.B., Herr, H.W., Ofman, U.S., Scher, H.I., & Holland, J.C. (1994). Quality of life of patients with prostate cancer and their spouses. The value of a data base in clinical care. Cancer, 73, 2791-2802.
12. Lavery, J.F., & Clarke, V.A. (1999). Prostate cancer: Patients’ and spouses’ coping and marital adjustment. Psychology, Health & Medicine, 4, 289-302.
13. Lee, Y.M., Francis, K., Walker, J., & Lee, S.M. (2004). What are the information needs of Chinese breast cancer patients receiving chemotherapy? European Journal of Oncology Nursing, 8, 224-233.
14. Lee-Jones, C., Humphris, G., Dixon, R., & Bebbington Hatcher, M. (1997). Fear of cancer recurrence: a literature review and proposed cognitive formulation to explain exacerbation of recurrence fears. Psychooncology, 6, 95-105.
15. Lemon, S.C., Zapka, J.G., & Clemow, L. (2004) Health behavior change among women with recent familial diagnosis of breast cancer. Preventive Medicine, 39, 253-262.
16. McCaffery, K., Borril, J., Williamson, S., Taylor, T., Sutton, S., Atkin, W., & Wardle, J. (2001). Declining the offer of flexible sigmoidoscopy screening for bowel cancer: a qualitative investigation of the decision-making process. Social Science & Medicine, 53, 679-691.
17. McCaughan, E., & McKenna, H. (2007). Never-ending making sense: towards a substantive theory of the information-seeking behaviour of newly diagnosed cancer patients. Journal of Clinical Nursing, 16, 2096-2104.
18. McPherson, C.J., Higginson, I.J., & Hearn, J. (2001). Effective methods of giving information in cancer: a systematic literature review of randomized controlled trials. Journal of Public Health, 23, 227-234.
19. Miles, A., Voorwinden, S., Chapman, S., & Wardle, J. (2008). Psychologic predictors of cancer information avoidance among older adults: the role of cancer fear and fatalism. Cancer Epidemiology, Biomarkers & Prevention, 17, 1872-1879.
20. Murray, E., Treweek, S., Pope, C., MacFarlane, A., Ballini, L., Dowrick, C., ..., May, C. (2010). Normalisation process theory: a framework for developing, evaluating and implementing complex interventions. BMC Medicine, 8, 63.
21. Noh, H.I., Lee, J.M., Yun, Y.H., Park, S.Y., Bae, D.S., Nam, J.H., Park, C.T., ..., Chang, Y.J. (2009). Cervical cancer patient information-seeking behaviors, information needs, and information sources in South Korea. Supportive Care in Cancer, 17, 1277-1283.
22. Palmeira, A.L., Teixeira, P.J., Branco, T.L., Martins, S.S., Minderico, C.S., Barata, J.T., Serpa, S.O., & Sardinha, L.B. (2007). Predicting short-term weight loss using four leading health behavior change theories. International Journal of Behavioral Nutrition and Physical Activity, 4, 14.
23. Persson, C., & Sundin, K. (2008). Being in the situation of a significant other to a person with inoperable lung cancer. Cancer Nursing, 31, 380-388.
24. Pinto, B.M., & Trunzo, J.J. (2005). Health behaviors during and after a cancer diagnosis. Cancer, 104, 2614-2623.
25. Prochaska, J.O., & Velicer, W.F. (1997). The transtheoretical model of health behavior change. American Journal of Health Promotion, 12, 38-48.
26. Rayman, M., Gibbons, K., & Dilley, K. (2009). The Prostate Care Cook Book. Prostate Cancer Research Foundation.
27. Rees, C.E., Ford, J.E., & Sheard, C.E. (2003). Patient information leaflets for prostate cancer: which leaflets should healthcare professionals recommend? Patient Education Counseling, 49, 263-272.
28. Rutten, L.J.F., Arora, N.K., Bakos, A.D., Aziz, N., & Rowland, J. (2005). Information needs and sources of information among cancer patients: a systematic review of research (1980–2003). Patient Education and Counseling, 57, 250-261.
29. Salminen, E., Bishop, M., Poussa, T., Drummond, R., & Salminen, S. (2004). Dietary attitudes and changes as well as use of supplements and complementary therapies by Australian and Finnish women following the diagnosis of breast cancer. European Journal of Clinical Nutrition, 58, 137-144.
30. Sanson-Fisher, R., Girgis, A., Boyes, A., Bonevski, B., Burton, L., & Cook, P. (2000). The unmet supportive care needs of patients with cancer. Cancer, 88, 226-237.
31. Sebregts, E.H., Falger, P.R., & Bär, F.W. (2000). Risk factor modification through nonpharmacological interventions in patients with coronary heart disease. Journal of Psychosomatic Research, 48, 425-441.
32. Sinfield, P., Baker, R., Agarwal, S., & Tarrant, C. (2008). Patient-centred care: what are the experiences of prostate cancer patients and their partners? Patient Education and Counseling, 73, 91-96.
33. Stark, D., Kiely, M., Smith, A., Morley, S., Selby, P., & House, A. (2004). Reassurance and the anxious cancer patient. British Journal of Cancer, 91, 893-899.
35. Stead, M., Caswell, S., Craigie, A.M., Eadie, D., & Anderson, A.S. (2012). Understanding the potential and challenges of adenoma treatment as a prevention opportunity: insights from the BeWEL formative study. Preventive Medicine, 54, 97-103.
36. Steginga, S.K., Occhipinti, S., Mccaffrey, J., & Dunn, J. (2001). Men’s attitudes toward prostate cancer and seeking prostate-specific antigen testing. Journal of Cancer Education, 16, 42-45.
37. Suls, J., & Wan, C.K. (1989). Effects of sensory and procedural information on coping with stressful medical procedures and pain: a meta-analysis. Journal of Consulting and Clinical Psychology, 57, 372.
38. Wallace, M., & Storms, S. (2007). The needs of men with prostate cancer: results of a focus group study. Applied Nursing Research, 20, 181-187.