Katia Mattarozzi1, Federica Casini1, Elisa Baldin2, Martina Baldini1, Alessandra Lugaresi3, Paola Milani4, Erika Pietrolongo3, Alberto Gajofatto5, Maurizio Leone6, Trond Riise7, Luca Vignatelli8,9, Roberto D'Alessandro2. 1. Department of Experimental, Diagnostic and Specialty Medicine, University of Bologna, Bologna, Italy. 2. IRCCS Institute of Neurological Sciences of Bologna, Bologna, Italy. 3. Department of Neuroscience Imaging and Clinical Sciences, Multiple Sclerosis Center, University "G. D'Annunzio", Chieti-Pescara, Italy. 4. Department of Neuroscience, S. Anna Hospital, University of Ferrara, Italy. 5. Department of Neurological and Movement Sciences, University of Verona, Verona, Italy. 6. Neurology Unit, Department of Medicine, IRCCS Casa Sollievo della Sofferenza, San Giovanni Rotondo, Italy. 7. Department of Global Public Health and Primary Care, Bergen University, Bergen, Norway. 8. Local Health Trust, Bologna, Italy. 9. Agenzia sanitaria e sociale regionale - Regione Emilia-Romagna, Bologna, Italy.
Abstract
BACKGROUND AND OBJECTIVE: An investigation of the domains Italian patients with multiple sclerosis (MS) named as constituting their quality of life over time. DESIGN: 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.
BACKGROUND AND OBJECTIVE: An investigation of the domains Italian patients with multiple sclerosis (MS) named as constituting their quality of life over time. DESIGN: 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.
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