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 language | English |
|---|---|
| Pages (from-to) | 437-447 |
| Number of pages | 11 |
| Journal | Health Expectations |
| Volume | 19 |
| Issue number | 2 |
| DOIs | |
| Publication status | Published - Apr 1 2016 |
Fingerprint
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
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 journal › Article
}
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 -