Experience of an information aid for newly diagnosed multiple sclerosis patients: a qualitative study on the SIMS-Trial
Standard
Experience of an information aid for newly diagnosed multiple sclerosis patients: a qualitative study on the SIMS-Trial. / Borreani, Claudia; Giordano, Andrea; Falautano, Monica; Lugaresi, Alessandra; Martinelli, Vittorio; Granella, Franco; Tortorella, Carla; Plasmati, Imma; Radaelli, Marta; Farina, Deborah; Dalla Bella, Eleonora; Bianchi, Elisabetta; Acquarone, Nicola; Miccinesi, Guido; Solari, Alessandra; SIMS-Trial group ; Heesen, Christoph.
in: HEALTH EXPECT, Jahrgang 17, Nr. 1, 01.02.2014, S. 36-48.Publikationen: SCORING: Beitrag in Fachzeitschrift/Zeitung › SCORING: Zeitschriftenaufsatz › Forschung › Begutachtung
Harvard
APA
Vancouver
Bibtex
}
RIS
TY - JOUR
T1 - Experience of an information aid for newly diagnosed multiple sclerosis patients: a qualitative study on the SIMS-Trial
AU - Borreani, Claudia
AU - Giordano, Andrea
AU - Falautano, Monica
AU - Lugaresi, Alessandra
AU - Martinelli, Vittorio
AU - Granella, Franco
AU - Tortorella, Carla
AU - Plasmati, Imma
AU - Radaelli, Marta
AU - Farina, Deborah
AU - Dalla Bella, Eleonora
AU - Bianchi, Elisabetta
AU - Acquarone, Nicola
AU - Miccinesi, Guido
AU - Solari, Alessandra
AU - SIMS-Trial group
AU - Heesen, Christoph
N1 - © 2011 John Wiley & Sons Ltd.
PY - 2014/2/1
Y1 - 2014/2/1
N2 - BACKGROUND: The SIMS-Trial (ISRCTN81072971) proved the effectiveness, in terms of patient's knowledge and care satisfaction, of an add-on information aid (personal interview with a physician using a navigable CD and take-home booklet) in 120 newly diagnosed patients with multiple sclerosis (MS) from five Italian centres.OBJECTIVE: To scrutinize the experience of SIMS-Trial participants in order to gain better understanding of the effectiveness of the information aid and its components.DESIGN: We performed (i) nine individual semi-structured interviews with a purposeful sample of SIMS-Trial patients who received the information aid, (ii) focus group meeting (FGM) with the physicians who conducted the personal interview, and (iii) FGM with patients' caring neurologists.RESULTS: Patients' experience with the information aid was positive as it enhanced their understanding of their disease, being viewed as a guided tour of their medical condition. The physicians who conducted the personal interviews were also positive in their overall evaluation but noted an initial difficulty in using the CD. The caring neurologists had limited direct experience of the aid, and their views were confined to utility of the information aid in general. All participants considered the combination of personal interview, CD navigation and take-home booklet essential, but urged a more flexible scheduling of the personal interview. It also emerged that some content required revision and that the aid was unsuitable for patients with primary progressive MS.CONCLUSIONS: The results of the study further support the value of the aid and also provide important indications for improving it and refining indications for use.
AB - BACKGROUND: The SIMS-Trial (ISRCTN81072971) proved the effectiveness, in terms of patient's knowledge and care satisfaction, of an add-on information aid (personal interview with a physician using a navigable CD and take-home booklet) in 120 newly diagnosed patients with multiple sclerosis (MS) from five Italian centres.OBJECTIVE: To scrutinize the experience of SIMS-Trial participants in order to gain better understanding of the effectiveness of the information aid and its components.DESIGN: We performed (i) nine individual semi-structured interviews with a purposeful sample of SIMS-Trial patients who received the information aid, (ii) focus group meeting (FGM) with the physicians who conducted the personal interview, and (iii) FGM with patients' caring neurologists.RESULTS: Patients' experience with the information aid was positive as it enhanced their understanding of their disease, being viewed as a guided tour of their medical condition. The physicians who conducted the personal interviews were also positive in their overall evaluation but noted an initial difficulty in using the CD. The caring neurologists had limited direct experience of the aid, and their views were confined to utility of the information aid in general. All participants considered the combination of personal interview, CD navigation and take-home booklet essential, but urged a more flexible scheduling of the personal interview. It also emerged that some content required revision and that the aid was unsuitable for patients with primary progressive MS.CONCLUSIONS: The results of the study further support the value of the aid and also provide important indications for improving it and refining indications for use.
KW - Adult
KW - Clinical Trials as Topic
KW - Female
KW - Humans
KW - Male
KW - Middle Aged
KW - Multiple Sclerosis
KW - Patient Education as Topic
KW - Patients
KW - Physicians
KW - Qualitative Research
KW - Time Factors
U2 - 10.1111/j.1369-7625.2011.00736.x
DO - 10.1111/j.1369-7625.2011.00736.x
M3 - SCORING: Journal article
C2 - 22040528
VL - 17
SP - 36
EP - 48
JO - HEALTH EXPECT
JF - HEALTH EXPECT
SN - 1369-6513
IS - 1
ER -
