Skip to main content
Top
Published in: BMC Health Services Research 1/2015

Open Access 01-06-2015 | Research article

Studies analysing the need for health-related information in Germany - a systematic review

Authors: Dawid Pieper, Fabian Jülich, Sunya-Lee Antoine, Christina Bächle, Nadja Chernyak, Jutta Genz, Michaela Eikermann, Andrea Icks

Published in: BMC Health Services Research | Issue 1/2015

Login to get access

Abstract

Background

Exploring health-related information needs is necessary to better tailor information. However, there is a lack of systematic knowledge on how and in which groups information needs has been assessed, and which information needs have been identified. We aimed to assess the methodology of studies used to assess information needs, as well as the topics and extent of health-related information needs and associated factors in Germany.

Methods

A systematic search was performed in Medline, Embase, Psycinfo, and all databases of the Cochrane Library. All studies investigating health-related information needs in patients, relatives, and the general population in Germany that were published between 2000 and 2012 in German or English were included. Descriptive content analysis was based on predefined categories.

Results

We identified 19 studies. Most studies addressed cancer or rheumatic disease. Methods used were highly heterogeneous. Apart from common topics such as treatment, diagnosis, prevention and health promotion, etiology and prognosis, high interest ratings were also found in more specific topics such as complementary and alternative medicine or nutrition. Information needs were notable in all surveyed patient groups, relatives, and samples of the general population. Younger age, shorter duration of illness, poorer health status and higher anxiety and depression scores appeared to be associated with higher information needs.

Conclusion

Knowledge about information needs is still scarce. Assuming the importance of comprehensive information to enable people to participate in health-related decisions, further systematic research is required.
Appendix
Available only for authorised users
Literature
1.
go back to reference Iconomou G, Vagenakis AG, Kalofonos HP. The informational needs, satisfaction with communication, and psychological status of primary caregivers of cancer patients receiving chemotherapy. Support Care Cancer. 2001;9(8):591–6.CrossRefPubMed Iconomou G, Vagenakis AG, Kalofonos HP. The informational needs, satisfaction with communication, and psychological status of primary caregivers of cancer patients receiving chemotherapy. Support Care Cancer. 2001;9(8):591–6.CrossRefPubMed
2.
go back to reference IOM. Crossing the Quality Chasm: A New Health System for the 21st Century. Washington, D. C: The National Academies Press; 2001. IOM. Crossing the Quality Chasm: A New Health System for the 21st Century. Washington, D. C: The National Academies Press; 2001.
3.
go back to reference Lohr KN. Medicare: a strategy for quality assurance. vol 1062–0273 (Print). Washington, D. C.: The National Academy Press; 1990. Lohr KN. Medicare: a strategy for quality assurance. vol 1062–0273 (Print). Washington, D. C.: The National Academy Press; 1990.
4.
go back to reference Adams E, Boulton M, Watson E. The information needs of partners and family members of cancer patients: a systematic literature review. Patient Educ Couns. 2009;77(2):179–86.CrossRefPubMed Adams E, Boulton M, Watson E. The information needs of partners and family members of cancer patients: a systematic literature review. Patient Educ Couns. 2009;77(2):179–86.CrossRefPubMed
5.
go back to reference Puts MT, Papoutsis A, Springall E, Tourangeau AE. A systematic review of unmet needs of newly diagnosed older cancer patients undergoing active cancer treatment. Support Care Cancer. 2012;20(7):1377–94.CrossRefPubMed Puts MT, Papoutsis A, Springall E, Tourangeau AE. A systematic review of unmet needs of newly diagnosed older cancer patients undergoing active cancer treatment. Support Care Cancer. 2012;20(7):1377–94.CrossRefPubMed
6.
go back to reference Rutten LJ, Arora NK, Bakos AD, Aziz N, Rowland J. Information needs and sources of information among cancer patients: a systematic review of research (1980–2003). Patient Educ Couns. 2005;57(3):250–61.CrossRefPubMed Rutten LJ, Arora NK, Bakos AD, Aziz N, Rowland J. Information needs and sources of information among cancer patients: a systematic review of research (1980–2003). Patient Educ Couns. 2005;57(3):250–61.CrossRefPubMed
7.
go back to reference Ormandy P. Defining information need in health - assimilating complex theories derived from information science. Health Expect. 2011;14(1):92–104.CrossRefPubMed Ormandy P. Defining information need in health - assimilating complex theories derived from information science. Health Expect. 2011;14(1):92–104.CrossRefPubMed
8.
go back to reference Valderas JM, Mendivil J, Parada A, Losada-Yanez M, Alonso J. Development of a geographic filter for PubMed to identify studies performed in Spain. Rev Esp Cardiol. 2006;59(12):1244–51.CrossRefPubMed Valderas JM, Mendivil J, Parada A, Losada-Yanez M, Alonso J. Development of a geographic filter for PubMed to identify studies performed in Spain. Rev Esp Cardiol. 2006;59(12):1244–51.CrossRefPubMed
9.
go back to reference Conrad S, Huppe A, Raspe H. Preference of patients with inflammatory bowel disease regarding information and shared decision-making: results from a cross-sectional survey in Germany. Z Gastroenterol. 2012;50(4):364–72.CrossRefPubMed Conrad S, Huppe A, Raspe H. Preference of patients with inflammatory bowel disease regarding information and shared decision-making: results from a cross-sectional survey in Germany. Z Gastroenterol. 2012;50(4):364–72.CrossRefPubMed
10.
go back to reference Eustachi A, Pajtler H, Linde K, Melchart D, Weidenhammer W. Patients of an interdisciplinary cancer treatment center: use of, knowledge about, and demand for CAM treatment options. Integr Cancer Ther. 2009;8(1):56–62.CrossRefPubMed Eustachi A, Pajtler H, Linde K, Melchart D, Weidenhammer W. Patients of an interdisciplinary cancer treatment center: use of, knowledge about, and demand for CAM treatment options. Integr Cancer Ther. 2009;8(1):56–62.CrossRefPubMed
11.
go back to reference Geraedts M, Amhof R. Gender differences in the demand for quality-related information on health care providers. Bundesgesundheitsbl Gesundheitsforsch Gesundheitsschutz. 2008;51(1):53–60.CrossRef Geraedts M, Amhof R. Gender differences in the demand for quality-related information on health care providers. Bundesgesundheitsbl Gesundheitsforsch Gesundheitsschutz. 2008;51(1):53–60.CrossRef
12.
go back to reference Heesen C, Kopke S, Richter T, Kasper J. Shared decision making and self-management in multiple sclerosis--a consequence of evidence. J Neurol. 2007;254 Suppl 2:II116–21.PubMed Heesen C, Kopke S, Richter T, Kasper J. Shared decision making and self-management in multiple sclerosis--a consequence of evidence. J Neurol. 2007;254 Suppl 2:II116–21.PubMed
13.
go back to reference Himmel W, Meyer J, Kochen MM, Michelmann HW. Information needs and visitors' experience of an Internet expert forum on infertility. J Med Internet Res. 2005;7(2):e20.CrossRefPubMedPubMedCentral Himmel W, Meyer J, Kochen MM, Michelmann HW. Information needs and visitors' experience of an Internet expert forum on infertility. J Med Internet Res. 2005;7(2):e20.CrossRefPubMedPubMedCentral
14.
go back to reference Jungbauer J, Doll K, Wilz G. Gender- and age-specific aspects of assistance need in caregivers of stroke patients: results from a qualitative panel study. Die Rehab. 2008;47(3):145–9.CrossRef Jungbauer J, Doll K, Wilz G. Gender- and age-specific aspects of assistance need in caregivers of stroke patients: results from a qualitative panel study. Die Rehab. 2008;47(3):145–9.CrossRef
15.
16.
go back to reference Maywald U, Schindler C, Bux Y, Kirch W. Drug information for patients -- unmet needs, evaluation and influence on the compliance]. Dtsch Med Wochenschr (1946). 2005;130(24):1485–90.CrossRef Maywald U, Schindler C, Bux Y, Kirch W. Drug information for patients -- unmet needs, evaluation and influence on the compliance]. Dtsch Med Wochenschr (1946). 2005;130(24):1485–90.CrossRef
17.
go back to reference Neumann M, Wirtz M, Ernstmann N, Ommen O, Langler A, Edelhauser F, et al. Identifying and predicting subgroups of information needs among cancer patients: an initial study using latent class analysis. Support Care Cancer. 2011;19(8):1197–209.CrossRefPubMed Neumann M, Wirtz M, Ernstmann N, Ommen O, Langler A, Edelhauser F, et al. Identifying and predicting subgroups of information needs among cancer patients: an initial study using latent class analysis. Support Care Cancer. 2011;19(8):1197–209.CrossRefPubMed
18.
go back to reference Nickel W, Born A, Hanns S, Brahler E. What information do people needing care and their care-giving relatives need? Z Gerontol Geriatr. 2011;44(2):109–14.CrossRefPubMed Nickel W, Born A, Hanns S, Brahler E. What information do people needing care and their care-giving relatives need? Z Gerontol Geriatr. 2011;44(2):109–14.CrossRefPubMed
19.
go back to reference Oskay-Ozcelik G, Lehmacher W, Konsgen D, Christ H, Kaufmann M, Lichtenegger W, et al. Breast cancer patients’ expectations in respect of the physician-patient relationship and treatment management results of a survey of 617 patients. Ann Oncol. 2007;18(3):479–84.CrossRefPubMed Oskay-Ozcelik G, Lehmacher W, Konsgen D, Christ H, Kaufmann M, Lichtenegger W, et al. Breast cancer patients’ expectations in respect of the physician-patient relationship and treatment management results of a survey of 617 patients. Ann Oncol. 2007;18(3):479–84.CrossRefPubMed
20.
go back to reference Richter JG, Becker A, Schalis H, Koch T, Willers R, Specker C, et al. An ask-the-expert service on a rheumatology web site: who were the users and what did they look for? Arthritis Care Res. 2011;63(4):604–11.CrossRef Richter JG, Becker A, Schalis H, Koch T, Willers R, Specker C, et al. An ask-the-expert service on a rheumatology web site: who were the users and what did they look for? Arthritis Care Res. 2011;63(4):604–11.CrossRef
21.
go back to reference Steckelberg A, Kasper J, Redegeld M, Muhlhauser I. Risk information--barrier to informed choice? A focus group study. Soz Praventivmed. 2004;49(6):375–80.CrossRefPubMed Steckelberg A, Kasper J, Redegeld M, Muhlhauser I. Risk information--barrier to informed choice? A focus group study. Soz Praventivmed. 2004;49(6):375–80.CrossRefPubMed
22.
go back to reference Thon A, Ullrich G. Information needs in parents of children with a rheumatic disease. Child Care Health Dev. 2009;35(1):41–7.CrossRefPubMed Thon A, Ullrich G. Information needs in parents of children with a rheumatic disease. Child Care Health Dev. 2009;35(1):41–7.CrossRefPubMed
23.
go back to reference Ullrich G, Dressler F, Thon A, Mattussek S. Informationsbedürfnisse von Eltern rheumakranker Kinder und ihre Wünsche hinsichtlich der Förderung von Krankheitsmanagement und Krankheitsbewältigung. Prävention und Rehab. 2003;15(1):34–8.CrossRef Ullrich G, Dressler F, Thon A, Mattussek S. Informationsbedürfnisse von Eltern rheumakranker Kinder und ihre Wünsche hinsichtlich der Förderung von Krankheitsmanagement und Krankheitsbewältigung. Prävention und Rehab. 2003;15(1):34–8.CrossRef
24.
go back to reference Vogel BA, Bengel J, Helmes AW. Information and decision making: patients’ needs and experiences in the course of breast cancer treatment. Patient Educ Couns. 2008;71(1):79–85.CrossRefPubMed Vogel BA, Bengel J, Helmes AW. Information and decision making: patients’ needs and experiences in the course of breast cancer treatment. Patient Educ Couns. 2008;71(1):79–85.CrossRefPubMed
25.
go back to reference Vogt C, Schaefer M. Disparities in knowledge and interest about benefits and risks of combined oral contraceptives. Eur J Contracept Reprod Health Care. 2011;16(3):183–93.CrossRefPubMed Vogt C, Schaefer M. Disparities in knowledge and interest about benefits and risks of combined oral contraceptives. Eur J Contracept Reprod Health Care. 2011;16(3):183–93.CrossRefPubMed
26.
go back to reference Wildner M, Brunner A, Weitkunat R, Weinheimer H, Moretti M, Raghuvanshi V, et al. The patients’ right to information and citizens’ perspective of their information needs. Z f Gesundheitswiss. 2002;10(4):305–15.CrossRef Wildner M, Brunner A, Weitkunat R, Weinheimer H, Moretti M, Raghuvanshi V, et al. The patients’ right to information and citizens’ perspective of their information needs. Z f Gesundheitswiss. 2002;10(4):305–15.CrossRef
27.
go back to reference Berth H, Petrowski K, Balck F. The Amsterdam Preoperative Anxiety and Information Scale (APAIS) - the first trial of a German version. Psycho-Social Med. 2007;4:Doc01. Berth H, Petrowski K, Balck F. The Amsterdam Preoperative Anxiety and Information Scale (APAIS) - the first trial of a German version. Psycho-Social Med. 2007;4:Doc01.
28.
go back to reference Grol R, Wensing M, Mainz J, Jung HP, Ferreira P, Hearnshaw H, et al. Patients in Europe evaluate general practice care: an international comparison. Br J Gen Pract. 2000;50(460):882–7.PubMedPubMedCentral Grol R, Wensing M, Mainz J, Jung HP, Ferreira P, Hearnshaw H, et al. Patients in Europe evaluate general practice care: an international comparison. Br J Gen Pract. 2000;50(460):882–7.PubMedPubMedCentral
29.
go back to reference Monsonego J, Cortes J, da Silva DP, Jorge AF, Klein P. Psychological impact, support and information needs for women with an abnormal Pap smear: comparative results of a questionnaire in three European countries. BMC Women’s Health. 2011;11:18.CrossRefPubMedPubMedCentral Monsonego J, Cortes J, da Silva DP, Jorge AF, Klein P. Psychological impact, support and information needs for women with an abnormal Pap smear: comparative results of a questionnaire in three European countries. BMC Women’s Health. 2011;11:18.CrossRefPubMedPubMedCentral
30.
go back to reference Degner LF, Davison BJ, Sloan JA, Mueller B. Development of a scale to measure information needs in cancer care. J Nurs Meas. 1998;6(2):137–53.PubMed Degner LF, Davison BJ, Sloan JA, Mueller B. Development of a scale to measure information needs in cancer care. J Nurs Meas. 1998;6(2):137–53.PubMed
32.
go back to reference Feldman-Stewart D, Capirci C, Brennenstuhl S, Tong C, Abacioglu U, Gawkowska-Suwinska M, et al. Information needs of early-stage prostate cancer patients: a comparison of nine countries. Radiother Oncol. 2010;94(3):328–33.CrossRefPubMed Feldman-Stewart D, Capirci C, Brennenstuhl S, Tong C, Abacioglu U, Gawkowska-Suwinska M, et al. Information needs of early-stage prostate cancer patients: a comparison of nine countries. Radiother Oncol. 2010;94(3):328–33.CrossRefPubMed
33.
go back to reference Dikkers MF, Dunning T, Savage S. Information needs of family carers of people with diabetes at the end of life: a literature review. J Palliat Med. 2013;16(12):1617–23.CrossRefPubMed Dikkers MF, Dunning T, Savage S. Information needs of family carers of people with diabetes at the end of life: a literature review. J Palliat Med. 2013;16(12):1617–23.CrossRefPubMed
34.
go back to reference Schoen C, Osborn R, Doty MM, Bishop M, Peugh J, Murukutla N. Toward higher-performance health systems: adults’ health care experiences in seven countries, 2007. Health Aff. 2007;26(6):w717–34.CrossRef Schoen C, Osborn R, Doty MM, Bishop M, Peugh J, Murukutla N. Toward higher-performance health systems: adults’ health care experiences in seven countries, 2007. Health Aff. 2007;26(6):w717–34.CrossRef
Metadata
Title
Studies analysing the need for health-related information in Germany - a systematic review
Authors
Dawid Pieper
Fabian Jülich
Sunya-Lee Antoine
Christina Bächle
Nadja Chernyak
Jutta Genz
Michaela Eikermann
Andrea Icks
Publication date
01-06-2015
Publisher
BioMed Central
Published in
BMC Health Services Research / Issue 1/2015
Electronic ISSN: 1472-6963
DOI
https://doi.org/10.1186/s12913-015-1076-9

Other articles of this Issue 1/2015

BMC Health Services Research 1/2015 Go to the issue