144 related articles for article (PubMed ID: 27389394)
1. Metachromatic Leukodystrophy: An Assessment of Disease Burden.
Eichler FS; Cox TM; Crombez E; Dali CÍ; Kohlschütter A
J Child Neurol; 2016 Nov; 31(13):1457-1463. PubMed ID: 27389394
[TBL] [Abstract][Full Text] [Related]
2. An international study of caregiver-reported burden and quality of life in metachromatic leukodystrophy.
Sevin C; Barth M; Wilds A; Afriyie A; Walz M; Dillon A; Howie K; Pang F
Orphanet J Rare Dis; 2022 Sep; 17(1):329. PubMed ID: 36056437
[TBL] [Abstract][Full Text] [Related]
3. Evaluating meaningful changes in physical functioning and cognitive declines in metachromatic leukodystrophy: a caregiver interview study.
Martin S; Harris N; Romanus D
J Patient Rep Outcomes; 2023 Jul; 7(1):70. PubMed ID: 37458805
[TBL] [Abstract][Full Text] [Related]
4. Insights into the natural history of metachromatic leukodystrophy from interviews with caregivers.
Harrington M; Whalley D; Twiss J; Rushton R; Martin S; Huynh L; Yang H
Orphanet J Rare Dis; 2019 Apr; 14(1):89. PubMed ID: 31036045
[TBL] [Abstract][Full Text] [Related]
5. The burden of disease in metachromatic leukodystrophy: results of a caregiver survey in the UK and Republic of Ireland.
Thomas S; Morrison A; Morton G; Roberts P; Clark V; Imrie J
Orphanet J Rare Dis; 2024 Feb; 19(1):87. PubMed ID: 38403596
[TBL] [Abstract][Full Text] [Related]
6. Lentiviral haemopoietic stem-cell gene therapy in early-onset metachromatic leukodystrophy: an ad-hoc analysis of a non-randomised, open-label, phase 1/2 trial.
Sessa M; Lorioli L; Fumagalli F; Acquati S; Redaelli D; Baldoli C; Canale S; Lopez ID; Morena F; Calabria A; Fiori R; Silvani P; Rancoita PM; Gabaldo M; Benedicenti F; Antonioli G; Assanelli A; Cicalese MP; Del Carro U; Sora MG; Martino S; Quattrini A; Montini E; Di Serio C; Ciceri F; Roncarolo MG; Aiuti A; Naldini L; Biffi A
Lancet; 2016 Jul; 388(10043):476-87. PubMed ID: 27289174
[TBL] [Abstract][Full Text] [Related]
7. The importance of early diagnosis and views on newborn screening in metachromatic leukodystrophy: results of a Caregiver Survey in the UK and Republic of Ireland.
Morton G; Thomas S; Roberts P; Clark V; Imrie J; Morrison A
Orphanet J Rare Dis; 2022 Nov; 17(1):403. PubMed ID: 36329444
[TBL] [Abstract][Full Text] [Related]
8. Experiences of patients and their family members with metachromatic leukodystrophy, adrenoleukodystrophy, and Krabbe disease: a qualitative systematic review protocol.
Koto Y; Ueki S; Yamakawa M; Sakai N
JBI Evid Synth; 2023 May; 21(5):1027-1033. PubMed ID: 36458855
[TBL] [Abstract][Full Text] [Related]
9. Experiences of burden, needs, rewards and resilience in family caregivers of people living with Motor Neurone Disease/Amyotrophic Lateral Sclerosis: A secondary thematic analysis of qualitative interviews.
Weisser FB; Bristowe K; Jackson D
Palliat Med; 2015 Sep; 29(8):737-45. PubMed ID: 25762578
[TBL] [Abstract][Full Text] [Related]
10. Impact on physical, social, and family functioning of patients with metachromatic leukodystrophy and their family members in Japan: A qualitative study.
Koto Y; Yamashita W; Sakai N
Mol Genet Metab Rep; 2024 Mar; 38():101059. PubMed ID: 38469094
[TBL] [Abstract][Full Text] [Related]
11. Challenging symptom profiles of life-limiting conditions in children: a survey of care professionals and families.
Malcolm C; Forbat L; Anderson G; Gibson F; Hain R
Palliat Med; 2011 Jun; 25(4):357-64. PubMed ID: 21228088
[TBL] [Abstract][Full Text] [Related]
12. Quality of life and burden in caregivers for patients with Parkinson's disease: concepts, assessment and related factors.
Martinez-Martin P; Rodriguez-Blazquez C; Forjaz MJ
Expert Rev Pharmacoecon Outcomes Res; 2012 Apr; 12(2):221-30. PubMed ID: 22458623
[TBL] [Abstract][Full Text] [Related]
13. Motor and non-motor symptoms in Turkish patients with Parkinson's disease affecting family caregiver burden and quality of life.
Ozdilek B; Gunal DI
J Neuropsychiatry Clin Neurosci; 2012; 24(4):478-83. PubMed ID: 23224455
[TBL] [Abstract][Full Text] [Related]
14. Juvenile metachromatic leukodystrophy: understanding the disease and implications for nursing care.
Barrell C
J Pediatr Oncol Nurs; 2007; 24(2):64-9. PubMed ID: 17332420
[TBL] [Abstract][Full Text] [Related]
15. The impact of severe rare chronic neurological disease in childhood on the quality of life of families-a study on MLD and PCH2.
Ammann-Schnell L; Groeschel S; Kehrer C; Frölich S; Krägeloh-Mann I
Orphanet J Rare Dis; 2021 May; 16(1):211. PubMed ID: 33971942
[TBL] [Abstract][Full Text] [Related]
16. Family functioning in severe brain injuries: correlations with caregivers' burden, perceived social support and quality of life.
Tramonti F; Bonfiglio L; Di Bernardo C; Ulivi C; Virgillito A; Rossi B; Carboncini MC
Psychol Health Med; 2015; 20(8):933-9. PubMed ID: 25668723
[TBL] [Abstract][Full Text] [Related]
17. Social/economic costs and health-related quality of life of mucopolysaccharidosis patients and their caregivers in Europe.
Péntek M; Gulácsi L; Brodszky V; Baji P; Boncz I; Pogány G; López-Bastida J; Linertová R; Oliva-Moreno J; Serrano-Aguilar P; Posada-de-la-Paz M; Taruscio D; Iskrov G; Schieppati A; von der Schulenburg JM; Kanavos P; Chevreul K; Persson U; Fattore G;
Eur J Health Econ; 2016 Apr; 17 Suppl 1():89-98. PubMed ID: 27062257
[TBL] [Abstract][Full Text] [Related]
18. Family caregiver quality of life in multiple sclerosis among Kuwaitis: a controlled study.
Alshubaili AF; Ohaeri JU; Awadalla AW; Mabrouk AA
BMC Health Serv Res; 2008 Oct; 8():206. PubMed ID: 18840287
[TBL] [Abstract][Full Text] [Related]
19. Correlation between patient quality of life in palliative care and burden of their family caregivers: a prospective observational cohort study.
Krug K; Miksch A; Peters-Klimm F; Engeser P; Szecsenyi J
BMC Palliat Care; 2016 Jan; 15():4. PubMed ID: 26767785
[TBL] [Abstract][Full Text] [Related]
20. Caregiver burden in older adults with bipolar disorder: relationship to functionality and neuropsychiatric symptoms.
Dos Santos GD; Forlenza OV; Ladeira RB; Aprahamian I; Almeida JG; Lafer B; Nunes PV
Psychogeriatrics; 2017 Sep; 17(5):317-323. PubMed ID: 28130857
[TBL] [Abstract][Full Text] [Related]
[Next] [New Search]
