The importance of the general practitioner as an information source for patients with hereditary haemochromatosis

Patient Education and Counseling

Volumn 96, Issue 1, 2014, Pages 86-92

  Teixeira, Emerência ^a,b   Borlido Santos, Júlio ^a   Brissot, Pierre ^c   Butzeck, Barbara ^d,u   Courtois, Françoise ^j,u   Evans, Robert W ^e,f   Fernau, Janet ^f   Nunes, João Arriscado ^g   Mullett, Margaret ^h   Paneque, Milena ^a,i   Pineau, Brigitte ^j   Porto, Graça ^a,i,k,l   Sorrill, Robert ^m   Sanchez, Mayka ^n,o   Swinkels, Dorine W ^p,q   Toska, Ketil ^r   Varkonyi, Judit ^s,t  

^a UNIVERSITY OF PORTO   (Portugal)

^b UNIVERSITY OF PORTO   (Portugal)

^c PONTCHAILLOU UNIVERSITY HOSPITAL   (France)

^d Haemochromatose Vereinigung Deutschland eV(HVD)   (Germany)

^e BRUNEL UNIVERSITY   (United Kingdom)

^f The Haemochromatosis Society   (United Kingdom)

^g UNIVERSITY OF COIMBRA   (Portugal)

^h Irish Haemochromatosis Association   (Ireland)

ⁱ CGPP Centre for Predictive and Preventive Medicine   (Portugal)

^j FFAMH Fédération Française des Associations de Malades de l'Hemochromatose   (France)

^k HOSPITAL DE SANTO ANTÓNIO   (Portugal)

^l APH Associação Portuguesa de Hemocromatose   (Portugal)

^m Associazione per lo Studio di Emocromatosi e delle Malattie da Sovraccarico di Ferro   (Italy)

ⁿ Institute of Predictive and Personalized Medicine of Cancer IMPPC   (Spain)

^o JOSEP CARRERAS LEUKAEMIA RESEARCH INSTITUTE IJC   (Spain)

^p RADBOUD UNIVERSITY MEDICAL CENTER   (Netherlands)

^q Hemochromatose Vereniging Nederland   (Netherlands)

^r Norwegian Haemochromatosis Association   (Norway)

^s SEMMELWEIS UNIVERSITY OF MEDICINE   (Hungary)

^t Hemokromatozisos Betegek Eyesülete   (Hungary)

^u EFAPH European Federation of Associations of Patients with Haemochromatosis   (France)

more..

Author keywords

General practitioner; Hereditary haemochromatosis; Patient communication; Sources of information

Indexed keywords

ADULT; AGED; ARTICLE; FEMALE; GENERAL PRACTITIONER; GENETIC SCREENING; HEMOCHROMATOSIS; HUMAN; INFORMATION SEEKING; MAJOR CLINICAL STUDY; MALE; MEDICAL INFORMATION; MEDICAL SPECIALIST; PATIENT EDUCATION; PATIENT PREFERENCE; PRIORITY JOURNAL; ATTITUDE TO HEALTH; GENETICS; INTERNET; INTERPERSONAL COMMUNICATION; MIDDLE AGED; QUESTIONNAIRE; VERY ELDERLY; YOUNG ADULT;

ADULT; AGED; AGED, 80 AND OVER; COMMUNICATION; FEMALE; GENERAL PRACTITIONERS; GENETIC TESTING; HEALTH KNOWLEDGE, ATTITUDES, PRACTICE; HEMOCHROMATOSIS; HUMANS; INFORMATION SEEKING BEHAVIOR; INTERNET; MALE; MIDDLE AGED; PATIENT EDUCATION AS TOPIC; SURVEYS AND QUESTIONNAIRES; YOUNG ADULT;

EID: 84902273236     PISSN: 07383991     EISSN: 18735134     Source Type: Journal    
DOI: 10.1016/j.pec.2014.04.017     Document Type: Article

References (24)

1. Henbest R.J.S.M. Patient-centredness in the consultation. 2, does it really make a difference?. Fam Pract 1990, 7:28-33.
2. Mead N., Bower P. Patient-centredness: a conceptual framework and review of the empirical literature. Soc Sci Med 2000, 51:1087-1110.
3. Bensing J., Rimondini M., Visser A. What patients want. Patient Educ Counsel 2013, 90:287-290.
4. Johansson K., Leino-Kilpi H., Salantera S., Lehtikunnas T., Ahonen P., Elomaa L., et al. Need for change in patient education: a Finnish survey from the patient's perspective. Patient Educ Counsel 2003, 51:239-245.
5. EASL clinical practice guidelines for HFE hemochromatosis. J Hepatol 2010, 53:3-22.
6. Adams P.C., Barton J.C. Haemochromatosis. Lancet 2007, 370:1855-1860.
7. Young M., Dick M.L., O'Rourke P. Haemochromatosis - a future focus for continuing education in general practice. Aust Fam Physician 2004, 33:1041-1044.
8. McDonnell S.M., Preston B.L., Jewell S.A., Barton J.C., Edwards C.Q., Adams P.C., et al. A survey of 2,851 patients with hemochromatosis: symptoms and response to treatment. Am J Med 1999, 106:619-624.
9. Witte D.L., Crosby W.H., Edwards C.Q., Fairbanks V.F., Mitros F.A. Practice guideline development task force of the College of American Pathologists, Hereditary hemochromatosis. Clin Chim Acta 1996, 245:139-200.
10. Pauwels N.S., De Buck E., Compernolle V., Vandekerckhove P. Worldwide policies on haemochromatosis and blood donation: a survey among blood services. Vox Sang 2013, 105:121-128.
11. Adams P., Brissot P., Powell L.W. EASL International Consensus Conference on Haemochromatosis. J Hepatol 2000, 33:485-504.
12. Prows C.A. Hereditary hemochromatosis. Nurs Clin North Am 2000, 35:707-717.
13. Motulsky A.G., Beutler E. Population screening in hereditary hemochromatosis. Annu Rev Public Health 2000, 21:65-79.
14. Mainous A.G., Knoll M.E., Everett C.J., Hulihan M.M., Grant A.M., Garrison C., et al. A national survey of hemochromatosis patients. J Am Board Fam Med 2012, 25:432-436.
15. Burns N., Grove S. The practice of nursing research: conduct, critique, and utilization 2004, Saunders, Philadelphia. 5th ed.
16. BIOSENSE. http://biosense.org.pt/.
17. International Standard Classification of Occupations: structure, group definitions and correspondence tables 2012, International Labour Office, Geneva.
18. WMA Declaration of Helsinki - Ethical Principles for Medical Research Involving Human Subjects. http://www.wma.net/en/20activities/10ethics/10helsinki%3A%20World%20Medical%20Association.
19. Nicholson A. Hereditary haemochromatosis: diagnosis and management from a GP perspective 2009, Irish College of General Practitioners; Irish Haemochromatosis Association, Ireland.
20. O'Connell E., Shealan O. Learning to live with hereditary haemochromatosis: a qualitative descriptive study. J Nurs Healthcare Chron Ilness 2011, 8.
21. Oermann M.H. Using health web sites for patient education. J Wound Ostomy Continence Nurs 2003, 30:217-223.
22. Leandro B., Paneque M., Sequeiros J., Porto G. Insufficient referral for genetic counseling in the management of hereditary haemochromatosis in Portugal: a study of perceptions of health professionals requesting HFE genotyping. J Genet Counsel 2014.
23. Burke S., Stone A., Bedward J., Thomas H., Farndon P. A "neglected part of the curriculum" or "of limited use"? Views on genetics training by nongenetics medical trainees and implications for delivery. Genet Med 2006, 8:109-115.
24. Acton R.T., Barton J.C., Casebeer L., Talley L. Survey of physician knowledge about hemochromatosis. Genet Med 2002, 4:136-141.