Assessing subjective quality of life domains after multiple sclerosis diagnosis disclosure.
OBJECTIVE
An investigation of the domains Italian patients with multiple sclerosis (MS) named as constituting their quality of life over time.


METHODS
We assessed, in 68 patients, QoL domains using the Schedule for the Evaluation of Individual QoL: (a) before MS diagnosis disclosure, (b) thirty days after disclosure, and (c) after one and (d) four years' follow-up.


RESULTS
The life domains most frequently named by patients were as follows: Family, Work and Finance, Hobbies, Health, Relationship with Friends and Job Effectiveness. Only Health and Job Effectiveness domains varied with time. The Health domain became a critical dimension when MS diagnosis was revealed. In addition, patients tended to be more satisfied with their health after disclosure compared to pre-diagnosis. Job Effectiveness seemed to be an important aspect until 1 year after diagnosis disclosure, but it tended to become less crucial over time. Family seems to be the most important domain over time, and psychological adaptation to MS seems to be characterized by a reconceptualization of aspects that revolve around oneself, such as professional success, rather than relational or affective factors.


CONCLUSIONS
Evaluating the most relevant life domains for patients and their alteration over time may provide practitioners with an important tool in making health-related decisions, thus improving health outcomes and QoL.
Department of Experimental, Diagnostic and Specialty Medicine, University of Bologna, Bologna, Italy.
Katia
K
Mattarozzi
Department of Experimental, Diagnostic and Specialty Medicine, University of Bologna, Bologna, Italy.
Federica
F
Casini
IRCCS Institute of Neurological Sciences of Bologna, Bologna, Italy.
Elisa
E
Baldin
Department of Experimental, Diagnostic and Specialty Medicine, University of Bologna, Bologna, Italy.
Martina
M
Baldini
Department of Neuroscience Imaging and Clinical Sciences, Multiple Sclerosis Center, University "G. D'Annunzio", Chieti-Pescara, Italy.
Alessandra
A
Lugaresi
Department of Neuroscience, S. Anna Hospital, University of Ferrara, Italy.
Paola
P
Milani
Department of Neuroscience Imaging and Clinical Sciences, Multiple Sclerosis Center, University "G. D'Annunzio", Chieti-Pescara, Italy.
Erika
E
Pietrolongo
Department of Neurological and Movement Sciences, University of Verona, Verona, Italy.
Alberto
A
Gajofatto
Neurology Unit, Department of Medicine, IRCCS Casa Sollievo della Sofferenza, San Giovanni Rotondo, Italy.
Maurizio
M
Leone
Department of Global Public Health and Primary Care, Bergen University, Bergen, Norway.
Trond
T
Riise
Local Health Trust, Bologna, Italy.|Agenzia sanitaria e sociale regionale - Regione Emilia-Romagna, Bologna, Italy.
Luca
L
Vignatelli
IRCCS Institute of Neurological Sciences of Bologna, Bologna, Italy.
Roberto
R
D'Alessandro
D000328:Adult; D030881:Disclosure; D004651:Employment; D005190:Family / Q000523:psychology; D005260:Female; D006304:Health Status; D006801:Humans; D007558:Italy; D008297:Male; D009103:Multiple Sclerosis / Q000175:diagnosis / Q000523:psychology*; D011788:Quality of Life
SEIQoL; diagnosis; individualized measure; life domains; multiple sclerosis; patient-centered care; quality of life