Assessing subjective quality of life domains after multiple sclerosis diagnosis disclosure

Katia Mattarozzi, Federica Casini, Elisa Baldin, Martina Baldini, Alessandra Lugaresi, Paola Milani, Erika Pietrolongo, Alberto Gajofatto, Maurizio Leone, Trond Riise, Luca Vignatelli, Roberto D'Alessandro

Research output: Contribution to journalArticle

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.

Original languageEnglish
Pages (from-to)437-447
Number of pages11
JournalHealth Expectations
Volume19
Issue number2
DOIs
Publication statusPublished - Apr 1 2016

Keywords

  • Diagnosis
  • Individualized measure
  • Life domains
  • Multiple sclerosis
  • Patient-centered care
  • Quality of life
  • SEIQoL

ASJC Scopus subject areas

  • Public Health, Environmental and Occupational Health

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