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

6 Citations (Scopus)

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

Fingerprint

Disclosure
Multiple Sclerosis
Quality of Life
Health
Hobbies
Psychological Adaptation
Appointments and Schedules

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

Cite this

Mattarozzi, K., Casini, F., Baldin, E., Baldini, M., Lugaresi, A., Milani, P., ... D'Alessandro, R. (2016). Assessing subjective quality of life domains after multiple sclerosis diagnosis disclosure. Health Expectations, 19(2), 437-447. https://doi.org/10.1111/hex.12367

Assessing subjective quality of life domains after multiple sclerosis diagnosis disclosure. / Mattarozzi, Katia; Casini, Federica; Baldin, Elisa; Baldini, Martina; Lugaresi, Alessandra; Milani, Paola; Pietrolongo, Erika; Gajofatto, Alberto; Leone, Maurizio; Riise, Trond; Vignatelli, Luca; D'Alessandro, Roberto.

In: Health Expectations, Vol. 19, No. 2, 01.04.2016, p. 437-447.

Research output: Contribution to journalArticle

Mattarozzi, K, Casini, F, Baldin, E, Baldini, M, Lugaresi, A, Milani, P, Pietrolongo, E, Gajofatto, A, Leone, M, Riise, T, Vignatelli, L & D'Alessandro, R 2016, 'Assessing subjective quality of life domains after multiple sclerosis diagnosis disclosure', Health Expectations, vol. 19, no. 2, pp. 437-447. https://doi.org/10.1111/hex.12367
Mattarozzi K, Casini F, Baldin E, Baldini M, Lugaresi A, Milani P et al. Assessing subjective quality of life domains after multiple sclerosis diagnosis disclosure. Health Expectations. 2016 Apr 1;19(2):437-447. https://doi.org/10.1111/hex.12367
Mattarozzi, Katia ; Casini, Federica ; Baldin, Elisa ; Baldini, Martina ; Lugaresi, Alessandra ; Milani, Paola ; Pietrolongo, Erika ; Gajofatto, Alberto ; Leone, Maurizio ; Riise, Trond ; Vignatelli, Luca ; D'Alessandro, Roberto. / Assessing subjective quality of life domains after multiple sclerosis diagnosis disclosure. In: Health Expectations. 2016 ; Vol. 19, No. 2. pp. 437-447.
@article{024abf21bff74df197c39f4f6d34a5e7,
title = "Assessing subjective quality of life domains after multiple sclerosis diagnosis disclosure",
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.",
keywords = "Diagnosis, Individualized measure, Life domains, Multiple sclerosis, Patient-centered care, Quality of life, SEIQoL",
author = "Katia Mattarozzi and Federica Casini and Elisa Baldin and Martina Baldini and Alessandra Lugaresi and Paola Milani and Erika Pietrolongo and Alberto Gajofatto and Maurizio Leone and Trond Riise and Luca Vignatelli and Roberto D'Alessandro",
year = "2016",
month = "4",
day = "1",
doi = "10.1111/hex.12367",
language = "English",
volume = "19",
pages = "437--447",
journal = "Health Expectations",
issn = "1369-6513",
publisher = "Wiley-Blackwell",
number = "2",

}

TY - JOUR

T1 - Assessing subjective quality of life domains after multiple sclerosis diagnosis disclosure

AU - Mattarozzi, Katia

AU - Casini, Federica

AU - Baldin, Elisa

AU - Baldini, Martina

AU - Lugaresi, Alessandra

AU - Milani, Paola

AU - Pietrolongo, Erika

AU - Gajofatto, Alberto

AU - Leone, Maurizio

AU - Riise, Trond

AU - Vignatelli, Luca

AU - D'Alessandro, Roberto

PY - 2016/4/1

Y1 - 2016/4/1

N2 - 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.

AB - 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.

KW - Diagnosis

KW - Individualized measure

KW - Life domains

KW - Multiple sclerosis

KW - Patient-centered care

KW - Quality of life

KW - SEIQoL

UR - http://www.scopus.com/inward/record.url?scp=84961205806&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=84961205806&partnerID=8YFLogxK

U2 - 10.1111/hex.12367

DO - 10.1111/hex.12367

M3 - Article

AN - SCOPUS:84961205806

VL - 19

SP - 437

EP - 447

JO - Health Expectations

JF - Health Expectations

SN - 1369-6513

IS - 2

ER -