ECTRIMS eLearning

Health-related quality of life in paediatric onset multiple sclerosis
Author(s):
H. Bullock
,
H. Bullock
Affiliations:
A. Kuczynski
,
A. Kuczynski
Affiliations:
G. Lehmann
,
G. Lehmann
Affiliations:
T. Murphy
,
T. Murphy
Affiliations:
C. Hemingway
C. Hemingway
Affiliations:
ECTRIMS Learn. Bullock H. 09/15/16; 146132; P291
Hayley Bullock
Hayley Bullock
Contributions
Abstract

Abstract: P291

Type: Poster

Abstract Category: Clinical aspects of MS - Paediatric MS

Background: Optimising Health-Related Quality of Life (HRQoL) is an important outcome in the management and treatment of chronic medical conditions. There is evidence that HRQoL is compromised in adults with Adult-Onset Multiple Sclerosis. This suggests that HRQoL is also at risk in young people with Paediatric-Onset Multiple Sclerosis (POMS).

Objective: To describe HRQoL in a clinical sample of young people with POMS.

Method: The Pediatric Quality of Life Inventory (PedsQL) is a widely-used multidimensional measure of HRQoL in children and young people. The PedsQL was completed by young people with POMS and their parents attending a specialist clinic, close to the time of diagnosis (T1 Self/Proxy n=41/35, mean age = 163/159m) and at approximately 14-20 month intervals (T2 n=28/28; T3 n=15/12). T1 data were analysed cross-sectionally, including comparison with published UK data for healthy young people. T1 data were also compared longitudinally with those at T2 and T3.

Results: Young people with POMS and their parents reported similar levels of HRQoL at T1 on all PedsQL scores, including the Total (p=0.875). Both Self and Proxy scores were statistically significantly lower than the healthy comparison group on the Physical, Emotional, and School dimensions and summary scores (p< 0.001, except Proxy Psychosocial p=0.002) but not the Social dimension. Longitudinal comparisons of data at T1, T2, and T3 did not indicate significant differences over time.

Conclusion: Young people with POMS are at significant risk of lower HRQoL than healthy peers in several aspects of physical and psychological functioning. This is evident soon after diagnosis and may remain stable at least over a period of 2-3 years. HRQoL should be measured as part of routine clinical care. Further research should consider both modifiable and non-modifiable factors influencing HRQoL in POMS.

Disclosure:

Hayley Bullock: nothing to disclose

Adam Kuczynski: nothing to disclose

Georgina Lehmann: nothing to disclose

Tara Murphy: nothing to disclose

Cheryl Hemingway: Biogen - educational grants, consulting, Merck-Serono- educational grant and Bayer- educational grant.

Abstract: P291

Type: Poster

Abstract Category: Clinical aspects of MS - Paediatric MS

Background: Optimising Health-Related Quality of Life (HRQoL) is an important outcome in the management and treatment of chronic medical conditions. There is evidence that HRQoL is compromised in adults with Adult-Onset Multiple Sclerosis. This suggests that HRQoL is also at risk in young people with Paediatric-Onset Multiple Sclerosis (POMS).

Objective: To describe HRQoL in a clinical sample of young people with POMS.

Method: The Pediatric Quality of Life Inventory (PedsQL) is a widely-used multidimensional measure of HRQoL in children and young people. The PedsQL was completed by young people with POMS and their parents attending a specialist clinic, close to the time of diagnosis (T1 Self/Proxy n=41/35, mean age = 163/159m) and at approximately 14-20 month intervals (T2 n=28/28; T3 n=15/12). T1 data were analysed cross-sectionally, including comparison with published UK data for healthy young people. T1 data were also compared longitudinally with those at T2 and T3.

Results: Young people with POMS and their parents reported similar levels of HRQoL at T1 on all PedsQL scores, including the Total (p=0.875). Both Self and Proxy scores were statistically significantly lower than the healthy comparison group on the Physical, Emotional, and School dimensions and summary scores (p< 0.001, except Proxy Psychosocial p=0.002) but not the Social dimension. Longitudinal comparisons of data at T1, T2, and T3 did not indicate significant differences over time.

Conclusion: Young people with POMS are at significant risk of lower HRQoL than healthy peers in several aspects of physical and psychological functioning. This is evident soon after diagnosis and may remain stable at least over a period of 2-3 years. HRQoL should be measured as part of routine clinical care. Further research should consider both modifiable and non-modifiable factors influencing HRQoL in POMS.

Disclosure:

Hayley Bullock: nothing to disclose

Adam Kuczynski: nothing to disclose

Georgina Lehmann: nothing to disclose

Tara Murphy: nothing to disclose

Cheryl Hemingway: Biogen - educational grants, consulting, Merck-Serono- educational grant and Bayer- educational grant.

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