A pilot project of Cancer Patient Library in Italy: the results of a customer satisfaction survey and its products

Truccolo, Ivana and Bianchet, Katia and Capello, Fabia and Russell-Edu, William and Dal Maso, Luigino and Colombatti, Alfonso and Ciolfi, Laura and Tirelli, Umberto and De Paoli, Paolo A pilot project of Cancer Patient Library in Italy: the results of a customer satisfaction survey and its products. Health Information and Libraries Journal, 2006, vol. 23, pp. 266-274. [Journal article (Paginated)]

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English abstract

The purpose of this study is to determine the degree of satisfaction of the users of the Cancer Information Point (CIP-LP), section of the Library for Patients (LP) active, since 1998, at the National Cancer Institute of Aviano, Italy. The CIP-LP is based on a skilled intermediary, adequate informational material and a specific location, within the Scientific Library of the Institute. Patients and Methods: A survey was developed to assess service functionality and quality from the users viewpoint. During a 6 month period, a questionnaire was mailed to 194 patients and relatives who previously used the CIP-LP, 113 (58%) were received and processed. Results: 91% of the respondents was pleased with the CIP-LP and 95% of them would recommend the service to other people. The information obtained contributed to a clearer understanding of the illness and treatment (45% as first answer) and to feel a better control of the situation (33%). 51% evaluated the informational material received as “good”, 42% “excellent”, 4% “sufficient quality”. Conclusion: This survey makes evident the appreciation and usefulness in the users’perception of a specific hospital library for cancer patients and their relatives providing an information service supplementary to doctor-patient communication.

Item type: Journal article (Paginated)
Keywords: Libraries, Medical; Libraries, Hospital; Information Services; Neoplasms; Patients; Patient Education Handout; Patient Participation; Information Dissemination; Health Care Surveys; Questionnaires; Pilot projects; Internet
Subjects: B. Information use and sociology of information > BA. Use and impact of information.
I. Information treatment for information services
A. Theoretical and general aspects of libraries and information.
Depositing user: Katia Bianchet
Date deposited: 25 Jan 2007
Last modified: 02 Oct 2014 12:06
URI: http://hdl.handle.net/10760/8850

References

Passalacqua R, Caminiti C, Salvagni S, Barni S, Beretta GD, Carlini P et al. Effects of media information on cancer patients' opinions, feelings, decision-making process and physician-patient communication. Cancer 2004; 100(5):1077-1084.

Basch EM, Thaler HT, Shi W, Yakren S, Schrag D. Use of information resources by patients with cancer and their companions. Cancer 2004; 100(11):2476-2483.

Davis TC, Williams MV, Marin E, Parker RM, Glass J. Health literacy and cancer communication. CA Cancer J Clin 2002; 52(3):134-149.

McPherson CJ, Higginson IJ, Hearn J. Effective methods of giving information in cancer: a systematic literature review of randomized controlled trials. J Public Health Med 2001; 23(3):227-234.

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):250-261.

Leichtnam-Dugarin L, Carretier J, Delavigne V, Brusco S, Hoarau H, Philip T et al. [The SOR SAVOIR Patient, a project of patient information and education]. Cancer Radiother 2003; 7(3):210-212.

Gaisser A, Stamatiadis-Smidt H. [Significance of information for cancer patients and the experience of the German Cancer Information Service in Heidelberg]. Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz 2004; 47(10):957-968.

McGee P. The patient library service in England. Health Libr Rev 1999; 16(3):204-207.

Manfredi C, Czaja R, Price J, Buis M, Janiszewski R. Cancer patients' search for information 65. Journal of the National Cancer Institute Monographs 1993;(14):93-104.

Gaisser A, Stamatiadis-Smidt H. Significance of information for cancer patients and the experience of the German Cancer Information Service in Heidelberg [Die Bedeutung von Information f³r Krebspatienten und Erfahrungen aus der Arbeit des Krebsinformationsdienstes in Heidelberg.]Bundesgesundheitsblatt, Gesundheitsforschung, Gesundheitsschutz 2004; 47(10):957-968.

Slevin ML, Terry Y, Hallett N, Jefferies S, Launder S, Plant R et al. BACUP--the first two years: evaluation of a national cancer information service. BMJ 1988; 297(6649):669-672.

Eakin EG, Strycker LA. 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 2001; 10(2):103-113.

Eng JL, Monkman DA, Verhoef MJ, Ramsum DL, Bradbury J. Canadian Cancer Society Information Services: lessons learned about complementary medicine information needs. Chronic Dis Can 2001; 22(3-4):102-107.

Holmberg SB. Cancer information for the public and for health personnel

[Information om cancer f÷r allma?nhet och sjukva?rdspersonal.]Nordisk medicin 1990; 105(5):158-159.

The Cancer Information Service: A 15-year history of service and research. J Natl Cancer Inst Monogr 1993;(14):1-185.

Whelan TJ, Rath D, Willan A, Neimanis M, Czukar D, Levine M. Evaluation of a patient file folder to improve the dissemination of written information materials for cancer patients. Cancer 1998; 83(8):1620-1625.

Morra ME, van Nevel JP, Nealon EO, Mazan KD, Thomsen C. History of the Cancer Information Service. Journal of the National Cancer Institute Monographs 1993;(14):7-33.

Wallberg B, Michelson H, Nystedt M, Bolund C, Degner LF, Wilking N. Information needs and preferences for participation in treatment decisions among Swedish breast cancer patients. Acta Oncol 2000; 39(4):467-476.

Collins BW, Sasser AB. Medical self-managing--the hospital librarian's role. Med Ref Serv Q 1998; 17(3):59-70.

Chapman K, Rush K. [Patient and family satisfaction with cancer information: pamphlet evaluation]. Can Oncol Nurs J 2003; 13(3):164-175.

Pualwan E. Patient resources: your patient has cancer: the American Cancer Society has answers. Cancer Pract 1999; 7(1):46-47.

Blumberg BD, Flaherty M. Services available to persons with cancer. National and regional organizations. JAMA 1980; 244(15):1715-1717.

Fervers B, Leichtnam-Dugarin L, Carretier J, Delavigne V, Hoarau H, Brusco S et al. The SOR SAVOIR PATIENT project--an evidence-based patient information and education project. Br J Cancer 2003; 89 Suppl 1:S111-S116.

Berner ES. The effects of the PDQ Patient Information File (PIF) on patients' knowledge, enrollment, in clinical trials, and satisfaction. J Cancer Education 1997; 12:121-125.

De Lorenzo F, Ballatori E, Di Costanzo F, Giacalone A, Ruggeri B, Tirelli U. Improving information to Italian cancer patients: results of a randomized study. Ann Oncol 2004; 15(5):721-725.

Truccolo I, Ciolfi L, Annunziata MA, Piani B, Turrin O, Venturelli M. Quando l'utente è un paziente. Biblioteche Oggi 1998; 16(7):26-30.

Wong RKS, Franssen E, Szumacher E, Connolly R, Evans M, Page B et al. What do patients living with advanced cancer and their carers want to know? A needs assessment. Support Care Cancer 2002; 10(5):408-415.

Mesters I, van den Borne B, De Boer M, Pruyn J. Measuring information needs among cancer patients. Patient Educ Couns 2001; 43(3):Jun-264.

Truccolo I, Annunziata MA, Capello F, Burigo A, Ciolfi L, Piani B et al. Quando i malati vogliono sapere di più…:un'esperienza di "Biblioteca per pazienti" in oncologia . QA 2003; 14(2):97-107.

Levy M. Doctor-Patient Communication: The Lifeline to comprehensive Cancer Care. ASCO Educational Book 1998; Spring:195-202.

Butow P, Brindle E, McConnell D, Boakes R, Tattersall M. Information booklets about cancer: factors influencing patient satisfaction and utilization. Patient Educ Couns 1998; 33(2):129-141.

Ranganathan SR. Documentation and its facets. London: Asia Publishing House, 1963.

Truccolo I, Capello F, Merighi R, Carbone A, Ricci R, Seroppi P et al. An Italian Oncologic Data Bank of Materials for patients and common people on CD ROM made by "CRO, Aviano (Italy): towards a National Italian Project called Azalea by "Alliance Against Cancer". Proceedings [on CD ROM] 2003;1-6.

Bogliolo A, Russell-Edu W, Alloro G, Ballarini R, Bocchini G, Cecere L et al. More information, more choice: an Italian database for oncology patients. Ann Oncol 2005; e-pub(ahead):of print.

Friis LS, Elverdam B, Schmidt KG. The patient's perspective: a qualitative study of acute myeloid leukaemia patients' need for information and their information-seeking behaviour. Support Care Cancer 2003; 11(3):162-170.

Ielasi P. La qualità percepita dagli utenti. Prospettive Sociali e Sanitarie 1996; -(4):20-21.

Krishnasamy M, Wilkie E, Haviland J. Lung cancer health care needs assessment: Patients' and informal carers' responses to a national mail questionnaire survey. Palliat Med 2001; 15(3):May-227.

Davidson JR, Brundage MD, Feldman-Stewart D. Lung cancer treatment decisions: patients' desires for participation and information. Psychooncology 1999; 8(6):511-520.

Passalacqua R, Caminiti C, Todeschini R, Filiberti S, Sivelli C, Pucci F et al. Prospective, randomized trial to test the efficacy of a new modality of delivering information and support to cancer patients in the Italian oncological divisions. Ann Oncol 2002; 13(Suppl 3 [4th National Congress of Medical Oncology. Torino, 28 settembre-1 ottobre 2002]):1-2.

Gilliam AD, Speake WJ, Scholefield JH, Beckingham IJ. Finding the best from the rest: evaluation of the quality of patient information on the Internet. Ann R Coll Surg Engl 2003; 85(1):44-46.

Eysenbach G, Till JE. Ethical issues in qualitative research on Internet communities. Review. BMJ 2001; 323(7321):1103-1105.

Eysenbach G, Powell J, Kuss O, Sa ER. Empirical studies assessing the quality of health information for consumers on the World Wide Web - A systematic review. JAMA 2002; 287(20):2691-2700.

Eysenbach G, Kohler C. Does the Internet harm health? Some evidence exist that the Internet does harm. BMJ 2002; 324(7331):238-239.

Henkel E. [Evaluation of the Heidelberg cancer information service by the consumer]. Onkologie 1990; 13(5):375-379.

Stromborg MF, Cohen R. Evaluating written papers education materials. Semin Oncol Nurs 1991; 7(2):125-134.

Davison BJ, Goldenberg SL, Gleave ME, Degner LF. Provision of individualized information to men and their partners to facilitate treatment decision making in prostate cancer. Oncol Nurs Forum 2003; 30(1):107-114.

Steptoe A, Sutcliffe I, Allen B, Coombes C. Satisfaction with communication, medical knowledge, and coping style in patients with metastatic cancer. Soc Sci Med 1991; 32(6):627-632.

Coulter A. Patient information and shared decision-making in cancer care. Br J Cancer 2003; 89 Suppl 1:S15-S16.

Boudioni M, McPherson K, Moynihan C, Melia J, Boulton M, Leydon G et al. Do men with prostate or colorectal cancer seek different information and support from women with cancer?. British Journal of Cancer 2001; 85(5):641-648.

Semple CJ, McGowan B. Need for appropriate written information for patients, with particular reference to head and neck cancer. J Clin Nurs 2002; 11(5):585-593.

James C, James N, Davies D, Harvey P, Tweddle S. Preferences for different sources of information about cancer. Patient Educ Couns 1999; 37(3):273-282.

Bianchet K, Salvador M, Michilin N, Ciolfi L, Giacomello E, De Paoli P et al. Il parere dei pazienti circa la qualitá del materiale informativo di carattere divulgativo: un'indagine in campo oncologico. AIDA informazioni 2005; 23(3):13-26.

Truccolo I. D26.Oncology patients and information in the Internet era: a survey on patient satisfaction of the 'Oncology Information Point', a service for patients in the Scientific Library of a Cancer Research Institute. Ann Oncol 15[suppl 2], ii55. 1-9-2004.


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