메뉴 건너뛰기




Volumn 37, Issue 1, 2016, Pages 71-79

Caregiver preferences for the treatment of males with fragile X syndrome

Author keywords

Caregivers; Developmental disabilities therapy; Discrete choice experiment; Fragile X syndrome; Fragile X syndrome therapy; Patient preference

Indexed keywords

ADOLESCENT; ADULT; CAREGIVER; CHILD; FEMALE; FRAGILE X SYNDROME; HUMAN; MALE; MIDDLE AGED; OUTCOME ASSESSMENT; PRESCHOOL CHILD; SELF CARE; SELF CONTROL; SEVERITY OF ILLNESS INDEX; YOUNG ADULT;

EID: 84952631973     PISSN: 0196206X     EISSN: 15367312     Source Type: Journal    
DOI: 10.1097/DBP.0000000000000234     Document Type: Article
Times cited : (17)

References (35)
  • 1
    • 0026345716 scopus 로고
    • Variation of the CGG repeat at the fragile X site results in genetic instability: Resolution of the Sherman paradox
    • Fu YH, Kuhl DP, Pizzuti A, et al. Variation of the CGG repeat at the fragile X site results in genetic instability: resolution of the Sherman paradox. Cell. 1991;67:1047-1058.
    • (1991) Cell. , vol.67 , pp. 1047-1058
    • Fu, Y.H.1    Kuhl, D.P.2    Pizzuti, A.3
  • 2
    • 0025905795 scopus 로고
    • Identification of a gene (FMR-1) containing a CGG repeat coincident with a breakpoint cluster region exhibiting length variation in fragile X syndrome
    • Verkerk AJ, Pieretti M, Sutcliffe JS, et al. Identification of a gene (FMR-1) containing a CGG repeat coincident with a breakpoint cluster region exhibiting length variation in fragile X syndrome. Cell. 1991;65:905-914.
    • (1991) Cell. , vol.65 , pp. 905-914
    • Verkerk, A.J.1    Pieretti, M.2    Sutcliffe, J.S.3
  • 3
    • 0025833298 scopus 로고
    • Absence of expression of the FMR-1 gene in fragile X syndrome
    • Pieretti M, Zhang FP, Fu YH, et al. Absence of expression of the FMR-1 gene in fragile X syndrome. Cell. 1991;66:817-822.
    • (1991) Cell. , vol.66 , pp. 817-822
    • Pieretti, M.1    Zhang, F.P.2    Fu, Y.H.3
  • 4
    • 0026525424 scopus 로고
    • Population screening for fragile X
    • Turner G, Robinson H, Laing S, et al. Population screening for fragile X. Lancet. 1992;339:1210-1213.
    • (1992) Lancet. , vol.339 , pp. 1210-1213
    • Turner, G.1    Robinson, H.2    Laing, S.3
  • 6
    • 49449089705 scopus 로고    scopus 로고
    • Co-occurring conditions associated with FMR1 gene variations: Findings from a national parent survey
    • Bailey DB, Raspa M, Olmsted M, et al. Co-occurring conditions associated with FMR1 gene variations: findings from a national parent survey. Am J Med Genet A. 2008;146A: 2060-2069.
    • (2008) Am J Med Genet A. , vol.146 A , pp. 2060-2069
    • Bailey, D.B.1    Raspa, M.2    Olmsted, M.3
  • 7
    • 84855455842 scopus 로고    scopus 로고
    • Medication utilization for targeted symptoms in children and adults with fragile X syndrome: U.S
    • Bailey DB Jr, Raspa M, Bishop E, et al. Medication utilization for targeted symptoms in children and adults with fragile X syndrome: U.S. survey. J Dev Behav Pediatr. 2012;33:62-69.
    • (2012) Survey. J Dev Behav Pediatr. , vol.33 , pp. 62-69
    • Bailey, D.B.1    Raspa, M.2    Bishop, E.3
  • 8
  • 9
    • 84870543150 scopus 로고    scopus 로고
    • Fragile X syndrome: Causes, diagnosis, mechanisms, and therapeutics
    • Bagni C, Tassone F, Neri G, et al. Fragile X syndrome: causes, diagnosis, mechanisms, and therapeutics. J Clin Invest. 2012; 122:4314-4322.
    • (2012) J Clin Invest. , vol.122 , pp. 4314-4322
    • Bagni, C.1    Tassone, F.2    Neri, G.3
  • 11
    • 84885015079 scopus 로고    scopus 로고
    • Drug discovery for autism spectrum disorder: Challenges and opportunities
    • Ghosh A, Michalon A, Lindemann L, et al. Drug discovery for autism spectrum disorder: challenges and opportunities. Nat Rev Drug Discov. 2013;12:777-790.
    • (2013) Nat Rev Drug Discov. , vol.12 , pp. 777-790
    • Ghosh, A.1    Michalon, A.2    Lindemann, L.3
  • 12
    • 84884693472 scopus 로고    scopus 로고
    • Outcome measures for clinical trials in fragile X syndrome
    • Berry-Kravis E, Hessl D, Abbeduto L, et al. Outcome measures for clinical trials in fragile X syndrome. J Dev Behav Pediatr. 2013;34: 508-522.
    • (2013) J Dev Behav Pediatr. , vol.34 , pp. 508-522
    • Berry-Kravis, E.1    Hessl, D.2    Abbeduto, L.3
  • 13
    • 84888300059 scopus 로고    scopus 로고
    • Evaluating migraineurs' preferences for migraine treatment outcomes using a choice experiment
    • Gonzalez JM, Johnson FR, Runken MC, et al. Evaluating migraineurs' preferences for migraine treatment outcomes using a choice experiment. Headache. 2013;53:1635-1650.
    • (2013) Headache. , vol.53 , pp. 1635-1650
    • Gonzalez, J.M.1    Johnson, F.R.2    Runken, M.C.3
  • 14
    • 2342567850 scopus 로고    scopus 로고
    • Patient preferences for acute pain treatment
    • Gan TJ, Lubarsky DA, Flood EM, et al. Patient preferences for acute pain treatment. Br J Anaesth. 2004;92:681-688.
    • (2004) Br J Anaesth. , vol.92 , pp. 681-688
    • Gan, T.J.1    Lubarsky, D.A.2    Flood, E.M.3
  • 15
    • 0031853959 scopus 로고    scopus 로고
    • Methodological issues in the application of conjoint analysis in health care
    • Ryan M, McIntosh E, Shackley P. Methodological issues in the application of conjoint analysis in health care. Health Econ. 1998;7: 373-378.
    • (1998) Health Econ. , vol.7 , pp. 373-378
    • Ryan, M.1    McIntosh, E.2    Shackley, P.3
  • 16
    • 0031721555 scopus 로고    scopus 로고
    • Magnetic resonance imaging for the investigation of knee injuries: An investigation of preferences
    • Bryan S, Buxton M, Sheldon R, et al. Magnetic resonance imaging for the investigation of knee injuries: an investigation of preferences. Health Econ. 1998;7:595-603.
    • (1998) Health Econ. , vol.7 , pp. 595-603
    • Bryan, S.1    Buxton, M.2    Sheldon, R.3
  • 17
    • 84905228221 scopus 로고    scopus 로고
    • Understanding the relative importance of preserving functional abilities in Alzheimer's disease in the United States and Germany
    • Hauber AB, Mohamed AF, Johnson FR, et al. Understanding the relative importance of preserving functional abilities in Alzheimer's disease in the United States and Germany. Qual Life Res. 2014;23: 1813-1821.
    • (2014) Qual Life Res. , vol.23 , pp. 1813-1821
    • Hauber, A.B.1    Mohamed, A.F.2    Johnson, F.R.3
  • 18
    • 0030506691 scopus 로고    scopus 로고
    • The importance of utility balance and efficient choice designs
    • Huber J, Zwerina K. The importance of utility balance and efficient choice designs. J Mark Res. 1996;33:307-317.
    • (1996) J Mark Res. , vol.33 , pp. 307-317
    • Huber, J.1    Zwerina, K.2
  • 19
    • 0035995550 scopus 로고    scopus 로고
    • Optimal design for multinomial choice experiments
    • Kanninen B. Optimal design for multinomial choice experiments. J Mark Res. 2002;39:214-227.
    • (2002) J Mark Res. , vol.39 , pp. 214-227
    • Kanninen, B.1
  • 22
    • 84872731697 scopus 로고    scopus 로고
    • Constructing experimental designs for discrete-choice experiments: Report of the ISPOR Conjoint Analysis Experimental Design Good Research Practices Task Force
    • Johnson FR, Lancsar E, Marshall D, et al. Constructing experimental designs for discrete-choice experiments: report of the ISPOR Conjoint Analysis Experimental Design Good Research Practices Task Force. Value Health. 2013;16:3-13.
    • (2013) Value Health. , vol.16 , pp. 3-13
    • Johnson, F.R.1    Lancsar, E.2    Marshall, D.3
  • 27
    • 0021677314 scopus 로고
    • The fragile X syndrome. A study of 83 families
    • Fryns JP. The fragile X syndrome. A study of 83 families. Clin Genet. 1984;26:497-528.
    • (1984) Clin Genet. , vol.26 , pp. 497-528
    • Fryns, J.P.1
  • 28
    • 32244440359 scopus 로고    scopus 로고
    • Psychiatric phenotype of the fragile X-associated tremor/ataxia syndrome (FXTAS) in males: Newly described fronto-subcortical dementia
    • Bacalman S, Farzin F, Bourgeois JA, et al. Psychiatric phenotype of the fragile X-associated tremor/ataxia syndrome (FXTAS) in males: newly described fronto-subcortical dementia. J Clin Psychiatry. 2006;67:87-94.
    • (2006) J Clin Psychiatry. , vol.67 , pp. 87-94
    • Bacalman, S.1    Farzin, F.2    Bourgeois, J.A.3
  • 29
    • 79952111073 scopus 로고    scopus 로고
    • Self-injurious behavior and fragile X syndrome: Findings from the national fragile X survey
    • Symons FJ, Byiers BJ, Raspa M, et al. Self-injurious behavior and fragile X syndrome: findings from the national fragile X survey. Am J Intellect Dev Disabil. 2010;115:473-481.
    • (2010) Am J Intellect Dev Disabil. , vol.115 , pp. 473-481
    • Symons, F.J.1    Byiers, B.J.2    Raspa, M.3
  • 30
    • 78751471413 scopus 로고    scopus 로고
    • The prevalence and phenomenology of self-injurious and aggressive behaviour in genetic syndromes
    • Arron K, Oliver C, Moss J, et al. The prevalence and phenomenology of self-injurious and aggressive behaviour in genetic syndromes. J Intellect Disabil Res. 2011;55:109-120.
    • (2011) J Intellect Disabil Res. , vol.55 , pp. 109-120
    • Arron, K.1    Oliver, C.2    Moss, J.3
  • 31
    • 84869452506 scopus 로고    scopus 로고
    • Health and economic consequences of fragile X syndrome for caregivers
    • Bailey DB Jr, Raspa M, Bishop E, et al. Health and economic consequences of fragile X syndrome for caregivers. J Dev Behav Pediatr. 2012;33:705-712.
    • (2012) J Dev Behav Pediatr. , vol.33 , pp. 705-712
    • Bailey, D.B.1    Raspa, M.2    Bishop, E.3
  • 32
    • 83055181288 scopus 로고    scopus 로고
    • The psychiatric presentation of fragile x: Evolution of the diagnosis and treatment of the psychiatric comorbidities of fragile X syndrome
    • Tranfaglia MR. The psychiatric presentation of fragile x: evolution of the diagnosis and treatment of the psychiatric comorbidities of fragile X syndrome. Dev Neurosci. 2011;33:337-348.
    • (2011) Dev Neurosci. , vol.33 , pp. 337-348
    • Tranfaglia, M.R.1
  • 33
    • 0022080849 scopus 로고
    • Diagnostic uses of the Vineland adaptive behavior scales
    • Sparrow SS, Cicchetti DV. Diagnostic uses of the Vineland adaptive behavior scales. J Pediatr Psychol. 1985;10:215-225.
    • (1985) J Pediatr Psychol. , vol.10 , pp. 215-225
    • Sparrow, S.S.1    Cicchetti, D.V.2
  • 34
    • 0028793248 scopus 로고
    • The aberrant behavior checklist-community: Factor validity and effect of subject variables for adults in group homes
    • Aman MG, Burrow WH, Wolford PL. The aberrant behavior checklist-community: factor validity and effect of subject variables for adults in group homes. Am J Ment Retard. 1995; 100:283-292.
    • (1995) Am J Ment Retard. , vol.100 , pp. 283-292
    • Aman, M.G.1    Burrow, W.H.2    Wolford, P.L.3
  • 35
    • 57149129372 scopus 로고    scopus 로고
    • The clinical global impressions scale: Applying a research tool in clinical practice
    • Busner J, Targum SD. The clinical global impressions scale: applying a research tool in clinical practice. Psychiatry (Edgmont). 2007;4:28-37.
    • (2007) Psychiatry (Edgmont) , vol.4 , pp. 28-37
    • Busner, J.1    Targum, S.D.2


* 이 정보는 Elsevier사의 SCOPUS DB에서 KISTI가 분석하여 추출한 것입니다.