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Health-related qual...
Health-related quality of life of children with spinal muscular atrophy in Sweden : A prospective cohort study in the era of disease-modifying therapy
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- Landfeldt, Erik (författare)
- IQVIA, Stockholm
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- Udo, Camilla, 1969- (författare)
- Marie Cederschiöld högskola,Uppsala universitet,Högskolan Dalarna,Stockholms universitet,Institutionen för socialt arbete,Dalarna University, Sweden; Marie Cederschiöld University, Sweden; Uppsala University, Sweden,Socialt arbete,Stockholm University; Marie Cederschiöld University, Stockholm; Center for Clinical Research Dalarna-Uppsala University, Falun,Centrum för klinisk forskning Dalarna,Department of Social Work, Stockholm University, Stockholm, Sweden; School of Health and Welfare, Dalarna University, Falun, Sweden; Department of Health Care Sciences, Palliative Research Centre, Marie Cederschiöld University, Stockholm, Sweden,Palliativt forskningscentrum, PFC,Department of Social Work, Stockholm University, Stockholm; School of Health and Welfare, Dalarna University, Falun; Center for Clinical Research Dalarna-Uppsala University, Falun
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- Lövgren, Malin, 1980- (författare)
- Marie Cederschiöld högskola,Palliativt forskningscentrum, PFC,Advanced Pediatric Home Care, Astrid Lindgren Children's Hospital, Karolinska University Hospital, Stockholm
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- Sejersen, Thomas (författare)
- Karolinska Institutet
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- Kreicbergs, Ulrika (författare)
- Marie Cederschiöld högskola,Palliativt forskningscentrum, PFC,Department of Women's and Children's Health, Karolinska Institutet, Stockholm
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(creator_code:org_t)
- Elsevier, 2023
- 2023
- Engelska.
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Ingår i: European journal of paediatric neurology. - : Elsevier. - 1090-3798 .- 1532-2130. ; 46, s. 67-73
- Relaterad länk:
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https://doi.org/10.1...
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Abstract
Ämnesord
Stäng
- The objective of this study was to estimate change over time in health-related quality of life (HRQoL) of children with spinal muscular atrophy (SMA) in Sweden. Children with SMA were identified via the National Patient Register by the National Board of Health and Welfare in Sweden. Patient HRQoL was caregiver proxy-assessed using the Pediatric Quality of Life Inventory 4.0 Generic Core Scales at baseline, as well as at 6, 12, and 18 months of follow-up. Results were stratified by SMA type. Mothers and fathers to 27 children with SMA (mean patient age: 9.17 years; 59% female) participated in the study. All patients received disease-modifying therapy. At baseline, across SMA types, the mean total score was estimated at between 52.68 and 59.19, Physical Functioning score at between 26.39 and 40.34, Emotional Functioning score at between 66.82 and 68.57, Social Functioning score at between 55.00 and 70.45, and School Functioning score at between 70.45 and 78.33. The mean annual total score change was estimated at −2.03 for SMA type I, 4.11 for SMA type II, and 1.12 for SMA type III. In conclusion, we show that SMA has a detrimental impact on HRQoL that extends above and beyond somatic disability. Children with SMA type II experienced a dramatic increase in HRQoL over time, predominantly related to improvement in physical and social functioning. Our data helps quantify the patient burden of disease and adds to the rapidly expanding body of evidence of the effectiveness of recently approved disease-modifying therapies for SMA.
Ämnesord
- MEDICIN OCH HÄLSOVETENSKAP -- Klinisk medicin -- Pediatrik (hsv//swe)
- MEDICAL AND HEALTH SCIENCES -- Clinical Medicine -- Pediatrics (hsv//eng)
- MEDICIN OCH HÄLSOVETENSKAP -- Klinisk medicin -- Neurologi (hsv//swe)
- MEDICAL AND HEALTH SCIENCES -- Clinical Medicine -- Neurology (hsv//eng)
- MEDICIN OCH HÄLSOVETENSKAP -- Hälsovetenskap -- Omvårdnad (hsv//swe)
- MEDICAL AND HEALTH SCIENCES -- Health Sciences -- Nursing (hsv//eng)
- MEDICIN OCH HÄLSOVETENSKAP -- Hälsovetenskap -- Folkhälsovetenskap, global hälsa, socialmedicin och epidemiologi (hsv//swe)
- MEDICAL AND HEALTH SCIENCES -- Health Sciences -- Public Health, Global Health, Social Medicine and Epidemiology (hsv//eng)
Nyckelord
- Quality of life
- Burden
- Well-being
- Health
- Neuromuscular disease
- Nusinersen
- Risdiplam
- Familjers och personals erfarenheter, överväganden och ställningstaganden avseende nya medicinska möjligheter för barn med spinal muskelatrofi (SMA)
- Människan i välfärdssamhället, Palliativ vård
Publikations- och innehållstyp
- ref (ämneskategori)
- art (ämneskategori)
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