Skip to main content
Erschienen in: Supportive Care in Cancer 11/2005

01.11.2005 | Original Article

Information needs of patients with incurable cancer

verfasst von: Elsbeth Voogt, Anna F. van Leeuwen, Adriaan P. Visser, Agnes van der Heide, Paul J. van der Maas

Erschienen in: Supportive Care in Cancer | Ausgabe 11/2005

Einloggen, um Zugang zu erhalten

Abstract

Goals

The aims of this study were to describe to what extent cancer patients with incurable cancer report to have been informed about disease-related topics and how they evaluate the quality of the information giving.

Patients and methods

One hundred and twenty-eight patients participated in our study within 2 months after having had a diagnosis of incurable cancer. They filled out a questionnaire and were interviewed personally. We assessed the level of information, information needs and demographic factors, and we registered the type and duration of the cancer, cancer therapy, other types of received care and contacts with health care professionals. Furthermore, we assessed patients’ appreciation of the information giving by their health care professionals.

Main results

The majority of the patients said to have been informed about treatment options, side effects of their treatment, physical symptoms, where to get help, helpful devices, and diet, whereas less than half of the patients were informed about psychosocial care, euthanasia, and complementary care. Of all patients, 39% felt a need for additional information about topics such as physical symptoms, diet, euthanasia, and alternative or complementary care, whereas 19% would have appreciated extra written information. Most patients (78–88%) were satisfied with the information giving by the clinical specialist, oncology nurses, and non-specialised nurses, but only 63% evaluated the information giving by general practitioners as good.

Conclusion

We conclude that most patients feel sufficiently informed about important disease-specific issues and are satisfied with the information giving by health care professionals. Nevertheless, a considerable number of patients appreciate additional information.
Literatur
1.
Zurück zum Zitat Burstein HJ, Gelber S, Guadagnoli E, Weeks JC (1999) Use of alternative medicine by women with early-stage breast cancer. N Engl J Med 340:1733–1739 Burstein HJ, Gelber S, Guadagnoli E, Weeks JC (1999) Use of alternative medicine by women with early-stage breast cancer. N Engl J Med 340:1733–1739
2.
Zurück zum Zitat Jefford M, Tattersall MH (2002) Informing and involving cancer patients in their own care. Lancet Oncol 3:629–637 Jefford M, Tattersall MH (2002) Informing and involving cancer patients in their own care. Lancet Oncol 3:629–637
3.
Zurück zum Zitat Jenkins V, Fallowfield L, Saul J (2001) Information needs of patients with cancer: results from a large study in UK cancer centres. Br J Cancer 84:48–51 Jenkins V, Fallowfield L, Saul J (2001) Information needs of patients with cancer: results from a large study in UK cancer centres. Br J Cancer 84:48–51
4.
Zurück zum Zitat Kessels RP (2003) Patients’ memory for medical information. J R Soc Med 96:219–222 Kessels RP (2003) Patients’ memory for medical information. J R Soc Med 96:219–222
5.
Zurück zum Zitat Kutner JS, Steiner JF, Corbett KK, Jahnigen DW, Barton PL (1999) Information needs in terminal illness. Soc Sci Med 48:1341–1352 Kutner JS, Steiner JF, Corbett KK, Jahnigen DW, Barton PL (1999) Information needs in terminal illness. Soc Sci Med 48:1341–1352
6.
Zurück zum Zitat McPherson CJ, Higginson IJ, Hearn J (2001) Effective methods of giving information in cancer: a systematic literature review of randomized controlled trials. J Public Health Med 23:227–234 McPherson CJ, Higginson IJ, Hearn J (2001) Effective methods of giving information in cancer: a systematic literature review of randomized controlled trials. J Public Health Med 23:227–234
7.
Zurück zum Zitat Mills ME, Davidson R (2002) Cancer patients’ sources of information: use and quality issues. Psychooncology 11:371–378 Mills ME, Davidson R (2002) Cancer patients’ sources of information: use and quality issues. Psychooncology 11:371–378
8.
Zurück zum Zitat Oldehinkel AJ, Koeter MW, Ormel J, Van den Brink W (1992) Coping with difficult situations: the relationship between general and situation specific coping behavior [Dutch]. Gedrag Gezond 20:236–244 Oldehinkel AJ, Koeter MW, Ormel J, Van den Brink W (1992) Coping with difficult situations: the relationship between general and situation specific coping behavior [Dutch]. Gedrag Gezond 20:236–244
9.
Zurück zum Zitat Osse BH, Vernooij-Dassen MJ, Schade E, de Vree B, van den Muijsenbergh ME, Grol RP (2002) Problems to discuss with cancer patients in palliative care: a comprehensive approach. Patient Educ Couns 47:195–204 Osse BH, Vernooij-Dassen MJ, Schade E, de Vree B, van den Muijsenbergh ME, Grol RP (2002) Problems to discuss with cancer patients in palliative care: a comprehensive approach. Patient Educ Couns 47:195–204
10.
Zurück zum Zitat Ptacek JT, Ptacek JJ (2001) Patients’ perceptions of receiving bad news about cancer. J Clin Oncol 19:4160–4164 Ptacek JT, Ptacek JJ (2001) Patients’ perceptions of receiving bad news about cancer. J Clin Oncol 19:4160–4164
11.
Zurück zum Zitat Sanderman R, Ormel J (1992) The Utrecht Coping List (UCL): validity and reliability [Dutch]. Gedrag Gezond 20:32–37 Sanderman R, Ormel J (1992) The Utrecht Coping List (UCL): validity and reliability [Dutch]. Gedrag Gezond 20:32–37
12.
Zurück zum Zitat Schreurs PJG, Van de Willige G, Brosschot JF, Tellegen B, Graus GMH (1993) The Utrecht coping list. Revised manual [Dutch]. Swets & Zeitlinger, Lisse Schreurs PJG, Van de Willige G, Brosschot JF, Tellegen B, Graus GMH (1993) The Utrecht coping list. Revised manual [Dutch]. Swets & Zeitlinger, Lisse
13.
Zurück zum Zitat Sollner W, Maislinger S, Kappauf H (2003) How to improve communication between physicians and cancer patients about use of complementary and alternative medicine? Psychooncology 12:203–204 Sollner W, Maislinger S, Kappauf H (2003) How to improve communication between physicians and cancer patients about use of complementary and alternative medicine? Psychooncology 12:203–204
14.
Zurück zum Zitat Sollner W, Maislinger S, DeVries A, Steixner E, Rumpold G, Lukas P (2000) Use of complementary and alternative medicine by cancer patients is not associated with perceived distress or poor compliance with standard treatment but with active coping behavior: a survey. Cancer 89:873–880 Sollner W, Maislinger S, DeVries A, Steixner E, Rumpold G, Lukas P (2000) Use of complementary and alternative medicine by cancer patients is not associated with perceived distress or poor compliance with standard treatment but with active coping behavior: a survey. Cancer 89:873–880
15.
Zurück zum Zitat Spinhoven PH, Ormel J, Sloekers PPA, Kempen GIJM (1997) A validation study of the Hospital Anxiety and Depression scale (HADS) in different groups of Dutch subjects. Psychol Med 27:363–370 Spinhoven PH, Ormel J, Sloekers PPA, Kempen GIJM (1997) A validation study of the Hospital Anxiety and Depression scale (HADS) in different groups of Dutch subjects. Psychol Med 27:363–370
16.
Zurück zum Zitat Tasaki K, Maskarinec G, Shumay DM, Tatsumura Y, Kakai H (2002) Communication between physicians and cancer patients about complementary and alternative medicine: exploring patients’ perspectives. Psychooncology 11:212–220 Tasaki K, Maskarinec G, Shumay DM, Tatsumura Y, Kakai H (2002) Communication between physicians and cancer patients about complementary and alternative medicine: exploring patients’ perspectives. Psychooncology 11:212–220
18.
Zurück zum Zitat Zigmond AS, Snaith RP (1983) The hospital anxiety and depression scale. Acta Psychiatr Scand 67:361–370 Zigmond AS, Snaith RP (1983) The hospital anxiety and depression scale. Acta Psychiatr Scand 67:361–370
Metadaten
Titel
Information needs of patients with incurable cancer
verfasst von
Elsbeth Voogt
Anna F. van Leeuwen
Adriaan P. Visser
Agnes van der Heide
Paul J. van der Maas
Publikationsdatum
01.11.2005
Erschienen in
Supportive Care in Cancer / Ausgabe 11/2005
Print ISSN: 0941-4355
Elektronische ISSN: 1433-7339
DOI
https://doi.org/10.1007/s00520-005-0823-6

Weitere Artikel der Ausgabe 11/2005

Supportive Care in Cancer 11/2005 Zur Ausgabe

Update Onkologie

Bestellen Sie unseren Fach-Newsletter und bleiben Sie gut informiert.