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Volumn 38, Issue 2, 2015, Pages 323-331

Pain: a prevalent feature in patients with mucopolysaccharidosis. Results of a cross-sectional national survey

(16)  Brands, Marion M G a   Güngör, Deniz a   van den Hout, Johanna M P a   Karstens, Francois P J a   Oussoren, Esmee a   Plug, Iris a   Boelens, Jaap Jan b   van Hasselt, Peter M c   Hollak, Carla E M d   Mulder, Margot F e   Gozalbo, Estela Rubio f   Smeitink, Jan A g   Smit, G Peter A h   Wijburg, Frits A d   Meutgeert, Hanka i   van der Ploeg, Ans T a,j  


Author keywords

[No Author keywords available]

Indexed keywords

ADOLESCENT; ADULT; ARTHRALGIA; CHILD; CHRONIC PAIN; COMPARATIVE STUDY; COST OF ILLNESS; CROSS-SECTIONAL STUDY; DISABILITY; FEMALE; HEALTH CARE SURVEY; HUMAN; INTELLECTUAL DISABILITY; MALE; MENTAL PATIENT; MIDDLE AGED; MUCOPOLYSACCHARIDOSES; NETHERLANDS; PAIN MEASUREMENT; PRESCHOOL CHILD; PREVALENCE; PSYCHOLOGY; QUALITY OF LIFE; QUESTIONNAIRE; YOUNG ADULT;

EID: 84939879622     PISSN: 01418955     EISSN: 15732665     Source Type: Journal    
DOI: 10.1007/s10545-014-9737-0     Document Type: Article
Times cited : (31)

References (42)
  • 1
    • 0032211654 scopus 로고    scopus 로고
    • Translation, validation, and norming of the Dutch language version of the SF-36 Health Survey in community and chronic disease populations
    • COI: 1:STN:280:DyaK1M%2Fjt1SisQ%3D%3D, PID: 9817123
    • Aaronson NK, Muller M, Cohen PD et al (1998) Translation, validation, and norming of the Dutch language version of the SF-36 Health Survey in community and chronic disease populations. J Clin Epidemiol 51:1055–1068
    • (1998) J Clin Epidemiol , vol.51 , pp. 1055-1068
    • Aaronson, N.K.1    Muller, M.2    Cohen, P.D.3
  • 2
    • 67349116348 scopus 로고    scopus 로고
    • Deficiency in N-acetylgalactosamine-6-sulfate sulfatase results in collagen perturbations in cartilage of Morquio syndrome A patients
    • COI: 1:CAS:528:DC%2BD1MXntVGit74%3D, PID: 19394256
    • Bank RA, Groener JE, van Gemund JJ, Maaswinkel PD, Hoeben KA, Schut HA, Everts V (2009) Deficiency in N-acetylgalactosamine-6-sulfate sulfatase results in collagen perturbations in cartilage of Morquio syndrome A patients. Mol Genet Metab 97:196–201
    • (2009) Mol Genet Metab , vol.97 , pp. 196-201
    • Bank, R.A.1    Groener, J.E.2    van Gemund, J.J.3    Maaswinkel, P.D.4    Hoeben, K.A.5    Schut, H.A.6    Everts, V.7
  • 3
    • 0029023563 scopus 로고
    • Behaviour in mucopolysaccharide disorders
    • COI: 1:STN:280:DyaK2Mzms1OqtA%3D%3D, PID: 7639557
    • Bax MC, Colville GA (1995) Behaviour in mucopolysaccharide disorders. Arch Dis Child 73:77–81
    • (1995) Arch Dis Child , vol.73 , pp. 77-81
    • Bax, M.C.1    Colville, G.A.2
  • 4
    • 0344734158 scopus 로고    scopus 로고
    • Pain epidemiology and health related quality of life in chronic non-malignant pain patients referred to a Danish multidisciplinary pain center
    • COI: 1:STN:280:DyaK1c7ivFCgsA%3D%3D, PID: 9469530
    • Becker N, Bondegaard Thomsen A, Olsen AK, Sjogren P, Bech P, Eriksen J (1997) Pain epidemiology and health related quality of life in chronic non-malignant pain patients referred to a Danish multidisciplinary pain center. Pain 73:393–400
    • (1997) Pain , vol.73 , pp. 393-400
    • Becker, N.1    Bondegaard Thomsen, A.2    Olsen, A.K.3    Sjogren, P.4    Bech, P.5    Eriksen, J.6
  • 5
    • 79953208073 scopus 로고    scopus 로고
    • Development and initial validation of the Batten’s observational pain scale
    • Breau LM, Camfield CS, Camfield P (2010) Development and initial validation of the Batten’s observational pain scale. J Pain Manag 3:283–292
    • (2010) J Pain Manag , vol.3 , pp. 283-292
    • Breau, L.M.1    Camfield, C.S.2    Camfield, P.3
  • 7
    • 0036710456 scopus 로고    scopus 로고
    • Psychometric properties of the non-communicating children’s pain checklist-revised
    • PID: 12237214
    • Breau LM, McGrath PJ, Camfield CS, Finley GA (2002) Psychometric properties of the non-communicating children’s pain checklist-revised. Pain 99:349–357
    • (2002) Pain , vol.99 , pp. 349-357
    • Breau, L.M.1    McGrath, P.J.2    Camfield, C.S.3    Finley, G.A.4
  • 8
    • 79959768640 scopus 로고    scopus 로고
    • Early diagnosis of peripheral nervous system involvement in Fabry disease and treatment of neuropathic pain: the report of an expert panel
    • PID: 21619592
    • Burlina AP, Sims KB, Politei JM et al (2011) Early diagnosis of peripheral nervous system involvement in Fabry disease and treatment of neuropathic pain: the report of an expert panel. BMC Neurol 11:61
    • (2011) BMC Neurol , vol.11 , pp. 61
    • Burlina, A.P.1    Sims, K.B.2    Politei, J.M.3
  • 9
    • 59449083175 scopus 로고    scopus 로고
    • Long-term efficacy and safety of laronidase in the treatment of mucopolysaccharidosis I
    • PID: 19117887
    • Clarke LA, Wraith JE, Beck M et al (2009) Long-term efficacy and safety of laronidase in the treatment of mucopolysaccharidosis I. Pediatrics 123:229–240
    • (2009) Pediatrics , vol.123 , pp. 229-240
    • Clarke, L.A.1    Wraith, J.E.2    Beck, M.3
  • 10
    • 81155157525 scopus 로고    scopus 로고
    • de Ru MH, Boelens JJ, Das AM, et al (2011)Enzyme replacement therapy and/or hematopoietic stem cell transplantation at diagnosis in patients with mucopolysaccharidosis type I: results of a European consensus procedure. Orphanet J Rare Dis 6: 55-1172-6-55
    • de Ru MH, Boelens JJ, Das AM, et al (2011)Enzyme replacement therapy and/or hematopoietic stem cell transplantation at diagnosis in patients with mucopolysaccharidosis type I: results of a European consensus procedure. Orphanet J Rare Dis 6: 55-1172-6-55.
  • 11
    • 84876076159 scopus 로고    scopus 로고
    • High prevalence of femoral head necrosis in Mucopolysaccharidosis type III (Sanfilippo disease): a national, observational, cross-sectional study
    • PID: 23541797
    • de Ruijter J, Maas M, Janssen A, Wijburg FA (2013) High prevalence of femoral head necrosis in Mucopolysaccharidosis type III (Sanfilippo disease): a national, observational, cross-sectional study. Mol Genet Metab 109:49–53
    • (2013) Mol Genet Metab , vol.109 , pp. 49-53
    • de Ruijter, J.1    Maas, M.2    Janssen, A.3    Wijburg, F.A.4
  • 13
    • 0030831327 scopus 로고    scopus 로고
    • Carpal tunnel syndrome in the mucopolysaccharidoses and mucolipidoses
    • COI: 1:STN:280:DyaK2szpt1Ghug%3D%3D
    • Haddad FS, Jones DH, Vellodi A, Kane N, Pitt MC (1997) Carpal tunnel syndrome in the mucopolysaccharidoses and mucolipidoses. J Bone Joint Surg (Br) 79:576–582
    • (1997) J Bone Joint Surg (Br) , vol.79 , pp. 576-582
    • Haddad, F.S.1    Jones, D.H.2    Vellodi, A.3    Kane, N.4    Pitt, M.C.5
  • 14
    • 71349087506 scopus 로고    scopus 로고
    • Improvement of functional ability in children with juvenile idiopathic arthritis by treatment with etanercept
    • COI: 1:CAS:528:DC%2BD1MXhsVajt7nN, PID: 19449011
    • Halbig M, Horneff G (2009) Improvement of functional ability in children with juvenile idiopathic arthritis by treatment with etanercept. Rheumatol Int 30:229–238
    • (2009) Rheumatol Int , vol.30 , pp. 229-238
    • Halbig, M.1    Horneff, G.2
  • 15
    • 27744493202 scopus 로고    scopus 로고
    • Direct comparison of measures of endurance, mobility, and joint function during enzyme-replacement therapy of mucopolysaccharidosis VI (Maroteaux-Lamy syndrome): results after 48 weeks in a phase 2 open-label clinical study of recombinant human N-acetylgalactosamine 4-sulfatase
    • PID: 15930196
    • Harmatz P, Ketteridge D, Giugliani R et al (2005) Direct comparison of measures of endurance, mobility, and joint function during enzyme-replacement therapy of mucopolysaccharidosis VI (Maroteaux-Lamy syndrome): results after 48 weeks in a phase 2 open-label clinical study of recombinant human N-acetylgalactosamine 4-sulfatase. Pediatrics 115:e681–e689
    • (2005) Pediatrics , vol.115 , pp. 681-689
    • Harmatz, P.1    Ketteridge, D.2    Giugliani, R.3
  • 16
    • 84861131757 scopus 로고    scopus 로고
    • Predictors of health-related quality of life in children and adolescents with juvenile idiopathic arthritis: results from a Web-based survey
    • COI: 1:STN:280:DC%2BC38vgt1Gltg%3D%3D
    • Haverman L, Grootenhuis MA, van den Berg JM et al (2012) Predictors of health-related quality of life in children and adolescents with juvenile idiopathic arthritis: results from a Web-based survey. Arthritis Care Res (Hoboken) 64:694–703
    • (2012) Arthritis Care Res (Hoboken) , vol.64 , pp. 694-703
    • Haverman, L.1    Grootenhuis, M.A.2    van den Berg, J.M.3
  • 17
    • 0034968031 scopus 로고    scopus 로고
    • The Faces Pain Scale-Revised: toward a common metric in pediatric pain measurement
    • COI: 1:STN:280:DC%2BD3Mzms1yqtw%3D%3D, PID: 11427329
    • Hicks CL, von Baeyer CL, Spafford PA, van Korlaar I, Goodenough B (2001) The Faces Pain Scale-Revised: toward a common metric in pediatric pain measurement. Pain 93:173–183
    • (2001) Pain , vol.93 , pp. 173-183
    • Hicks, C.L.1    von Baeyer, C.L.2    Spafford, P.A.3    van Korlaar, I.4    Goodenough, B.5
  • 18
    • 39549084508 scopus 로고    scopus 로고
    • The severity of chronic pediatric pain: an epidemiological study
    • PID: 18088558
    • Huguet A, Miro J (2008) The severity of chronic pediatric pain: an epidemiological study. J Pain 9:226–236
    • (2008) J Pain , vol.9 , pp. 226-236
    • Huguet, A.1    Miro, J.2
  • 19
    • 0141676397 scopus 로고    scopus 로고
    • Interpretation of visual analog scale ratings and change scores: a reanalysis of two clinical trials of postoperative pain
    • PID: 14622683
    • Jensen MP, Chen C, Brugger AM (2003) Interpretation of visual analog scale ratings and change scores: a reanalysis of two clinical trials of postoperative pain. J Pain 4:407–414
    • (2003) J Pain , vol.4 , pp. 407-414
    • Jensen, M.P.1    Chen, C.2    Brugger, A.M.3
  • 20
    • 77957605705 scopus 로고    scopus 로고
    • Causes of aggressive behavior in patients with dementia
    • PID: 20361896
    • Kunik ME, Snow AL, Davila JA et al (2010) Causes of aggressive behavior in patients with dementia. J Clin Psychiatry 71:1145–1152
    • (2010) J Clin Psychiatry , vol.71 , pp. 1145-1152
    • Kunik, M.E.1    Snow, A.L.2    Davila, J.A.3
  • 21
    • 84939921934 scopus 로고    scopus 로고
    • Kwaliteitsinstituut voor de Gezondheidszorg, CBO (2007)Richtlijn Pijnmeting en Behandeling bij pijn bij kinderen
    • Kwaliteitsinstituut voor de Gezondheidszorg, CBO (2007)Richtlijn Pijnmeting en Behandeling bij pijn bij kinderen.
  • 22
    • 79956217251 scopus 로고    scopus 로고
    • High prevalence of carpal tunnel syndrome in children with mucopolysaccharidosis type II (Hunter syndrome)
    • PID: 21567931
    • Kwon JY, Ko K, Sohn YB et al (2011) High prevalence of carpal tunnel syndrome in children with mucopolysaccharidosis type II (Hunter syndrome). Am J Med Genet A 155A:1329–1335
    • (2011) Am J Med Genet A , vol.155A , pp. 1329-1335
    • Kwon, J.Y.1    Ko, K.2    Sohn, Y.B.3
  • 23
    • 34548513533 scopus 로고    scopus 로고
    • Measuring disability and quality of life in established rheumatoid arthritis
    • PID: 17870030
    • Lillegraven S, Kvien TK (2007) Measuring disability and quality of life in established rheumatoid arthritis. Best Pract Res Clin Rheumatol 21:827–840
    • (2007) Best Pract Res Clin Rheumatol , vol.21 , pp. 827-840
    • Lillegraven, S.1    Kvien, T.K.2
  • 24
    • 62649092120 scopus 로고    scopus 로고
    • A modified version of the non-communicating children pain checklist-revised, adapted to adults with intellectual and developmental disabilities: sensitivity to pain and internal consistency
    • PID: 19201658
    • Lotan M, Ljunggren EA, Johnsen TB, Defrin R, Pick CG, Strand LI (2009) A modified version of the non-communicating children pain checklist-revised, adapted to adults with intellectual and developmental disabilities: sensitivity to pain and internal consistency. J Pain 10:398–407
    • (2009) J Pain , vol.10 , pp. 398-407
    • Lotan, M.1    Ljunggren, E.A.2    Johnsen, T.B.3    Defrin, R.4    Pick, C.G.5    Strand, L.I.6
  • 25
    • 0031955201 scopus 로고    scopus 로고
    • Behaviours caregivers use to determine pain in non-verbal, cognitively impaired individuals
    • COI: 1:STN:280:DyaK1c3pt1aitA%3D%3D, PID: 9630262
    • McGrath PJ, Rosmus C, Canfield C, Campbell MA, Hennigar A (1998) Behaviours caregivers use to determine pain in non-verbal, cognitively impaired individuals. Dev Med Child Neurol 40:340–343
    • (1998) Dev Med Child Neurol , vol.40 , pp. 340-343
    • McGrath, P.J.1    Rosmus, C.2    Canfield, C.3    Campbell, M.A.4    Hennigar, A.5
  • 26
    • 77949296222 scopus 로고    scopus 로고
    • Chronic pain in people with an intellectual disability: under-recognised and under-treated?
    • COI: 1:STN:280:DC%2BC3c3ls1ClsA%3D%3D, PID: 20387264
    • McGuire BE, Daly P, Smyth F (2010) Chronic pain in people with an intellectual disability: under-recognised and under-treated? J Intellect Disabil Res 54:240–245
    • (2010) J Intellect Disabil Res , vol.54 , pp. 240-245
    • McGuire, B.E.1    Daly, P.2    Smyth, F.3
  • 27
    • 0000869162 scopus 로고    scopus 로고
    • The Mucopolysaccharidoses
    • Scriver CR, Beaudet AL, Valle D, (eds), McGraw-Hill Professional, New York:
    • Neufeld EF, Muenzer J et al (2001) The Mucopolysaccharidoses. In: Scriver CR, Beaudet AL, Valle D (eds) The Metabolic and Molecular Bases of Inherited Disease. McGraw-Hill Professional, New York, pp 3421–3452
    • (2001) The Metabolic and Molecular Bases of Inherited Disease , pp. 3421-3452
    • Neufeld, E.F.1    Muenzer, J.2
  • 28
    • 80052808521 scopus 로고    scopus 로고
    • Factors predicting health-related quality of life in knee osteoarthritis among community-dwelling women in Japan: the Hizen-Oshima study
    • PID: 21902153
    • Norimatsu T, Osaki M, Tomita M et al (2011) Factors predicting health-related quality of life in knee osteoarthritis among community-dwelling women in Japan: the Hizen-Oshima study. Orthopedics 34:e535–e540
    • (2011) Orthopedics , vol.34 , pp. 535-540
    • Norimatsu, T.1    Osaki, M.2    Tomita, M.3
  • 29
    • 80053454441 scopus 로고    scopus 로고
    • Bone, joint and tooth development in mucopolysaccharidoses: relevance to therapeutic options
    • COI: 1:CAS:528:DC%2BC3MXht1KmsbbJ, PID: 21827850
    • Oussoren E, Brands MM, Ruijter GJ, der Ploeg AT, Reuser AJ (2011) Bone, joint and tooth development in mucopolysaccharidoses: relevance to therapeutic options. Biochim Biophys Acta 1812:1542–1556
    • (2011) Biochim Biophys Acta , vol.1812 , pp. 1542-1556
    • Oussoren, E.1    Brands, M.M.2    Ruijter, G.J.3    der Ploeg, A.T.4    Reuser, A.J.5
  • 30
    • 0034172692 scopus 로고    scopus 로고
    • Bone and joint complications related to Gaucher disease
    • COI: 1:STN:280:DC%2BD3M7pt1altA%3D%3D, PID: 11123056
    • Pastores GM, Patel MJ, Firooznia H (2000) Bone and joint complications related to Gaucher disease. Curr Rheumatol Rep 2:175–180
    • (2000) Curr Rheumatol Rep , vol.2 , pp. 175-180
    • Pastores, G.M.1    Patel, M.J.2    Firooznia, H.3
  • 31
    • 11144283218 scopus 로고    scopus 로고
    • Categorizing the severity of cancer pain: further exploration of the establishment of cutpoints
    • PID: 15621362
    • Paul SM, Zelman DC, Smith M, Miaskowski C (2005) Categorizing the severity of cancer pain: further exploration of the establishment of cutpoints. Pain 113:37–44
    • (2005) Pain , vol.113 , pp. 37-44
    • Paul, S.M.1    Zelman, D.C.2    Smith, M.3    Miaskowski, C.4
  • 33
    • 73449146297 scopus 로고    scopus 로고
    • Major improvements in health-related quality of life during the use of etanercept in patients with previously refractory juvenile idiopathic arthritis
    • COI: 1:CAS:528:DC%2BC3cXhtFOls7s%3D, PID: 19581280
    • Prince FH, Geerdink LM, Borsboom GJ et al (2010) Major improvements in health-related quality of life during the use of etanercept in patients with previously refractory juvenile idiopathic arthritis. Ann Rheum Dis 69:138–142
    • (2010) Ann Rheum Dis , vol.69 , pp. 138-142
    • Prince, F.H.1    Geerdink, L.M.2    Borsboom, G.J.3
  • 35
    • 17744378748 scopus 로고    scopus 로고
    • Joint and bone disease in mucopolysaccharidoses VI and VII: identification of new therapeutic targets and biomarkers using animal models
    • COI: 1:CAS:528:DC%2BD2MXjtlymtbk%3D, PID: 15746260
    • Simonaro CM, D’Angelo M, Haskins ME, Schuchman EH (2005) Joint and bone disease in mucopolysaccharidoses VI and VII: identification of new therapeutic targets and biomarkers using animal models. Pediatr Res 57:701–707
    • (2005) Pediatr Res , vol.57 , pp. 701-707
    • Simonaro, C.M.1    D’Angelo, M.2    Haskins, M.E.3    Schuchman, E.H.4
  • 36
    • 38749093729 scopus 로고    scopus 로고
    • Mechanism of glycosaminoglycan-mediated bone and joint disease: implications for the mucopolysaccharidoses and other connective tissue diseases
    • COI: 1:CAS:528:DC%2BD1cXhslOmtbk%3D, PID: 18079441
    • Simonaro CM, D’Angelo M, He X, Eliyahu E, Shtraizent N, Haskins ME, Schuchman EH (2008) Mechanism of glycosaminoglycan-mediated bone and joint disease: implications for the mucopolysaccharidoses and other connective tissue diseases. Am J Pathol 172:112–122
    • (2008) Am J Pathol , vol.172 , pp. 112-122
    • Simonaro, C.M.1    D’Angelo, M.2    He, X.3    Eliyahu, E.4    Shtraizent, N.5    Haskins, M.E.6    Schuchman, E.H.7
  • 37
    • 76249093889 scopus 로고    scopus 로고
    • Involvement of the Toll-like receptor 4 pathway and use of TNF-alpha antagonists for treatment of the mucopolysaccharidoses
    • COI: 1:CAS:528:DC%2BC3cXnsFClsQ%3D%3D, PID: 20018674
    • Simonaro CM, Ge Y, Eliyahu E, He X, Jepsen KJ, Schuchman EH (2010) Involvement of the Toll-like receptor 4 pathway and use of TNF-alpha antagonists for treatment of the mucopolysaccharidoses. Proc Natl Acad Sci U S A 107:222–227
    • (2010) Proc Natl Acad Sci U S A , vol.107 , pp. 222-227
    • Simonaro, C.M.1    Ge, Y.2    Eliyahu, E.3    He, X.4    Jepsen, K.J.5    Schuchman, E.H.6
  • 38
    • 32544446020 scopus 로고    scopus 로고
    • The PedsQL 4.0 as a school population health measure: feasibility, reliability, and validity
    • PID: 16468077
    • Varni JW, Burwinkle TM, Seid M (2006) The PedsQL 4.0 as a school population health measure: feasibility, reliability, and validity. Qual Life Res 15:203–215
    • (2006) Qual Life Res , vol.15 , pp. 203-215
    • Varni, J.W.1    Burwinkle, T.M.2    Seid, M.3
  • 39
    • 34548523100 scopus 로고    scopus 로고
    • Impaired health-related quality of life in children and adolescents with chronic conditions: a comparative analysis of 10 disease clusters and 33 disease categories/severities utilizing the PedsQL 4.0 Generic Core Scales
    • PID: 17634123
    • Varni JW, Limbers CA, Burwinkle TM (2007) Impaired health-related quality of life in children and adolescents with chronic conditions: a comparative analysis of 10 disease clusters and 33 disease categories/severities utilizing the PedsQL 4.0 Generic Core Scales. Health Qual Life Outcomes 5:43
    • (2007) Health Qual Life Outcomes , vol.5 , pp. 43
    • Varni, J.W.1    Limbers, C.A.2    Burwinkle, T.M.3
  • 40
    • 0033073557 scopus 로고    scopus 로고
    • The PedsQL: measurement model for the pediatric quality of life inventory
    • COI: 1:STN:280:DyaK1M7ks1OhsA%3D%3D, PID: 10024117
    • Varni JW, Seid M, Rode CA (1999) The PedsQL: measurement model for the pediatric quality of life inventory. Med Care 37:126–139
    • (1999) Med Care , vol.37 , pp. 126-139
    • Varni, J.W.1    Seid, M.2    Rode, C.A.3
  • 41
    • 80051798939 scopus 로고    scopus 로고
    • Chronic pain in adults with an intellectual disability: prevalence, impact, and health service use based on caregiver report
    • PID: 21497999
    • Walsh M, Morrison TG, McGuire BE (2011) Chronic pain in adults with an intellectual disability: prevalence, impact, and health service use based on caregiver report. Pain 152:1951–1957
    • (2011) Pain , vol.152 , pp. 1951-1957
    • Walsh, M.1    Morrison, T.G.2    McGuire, B.E.3
  • 42
    • 77649212017 scopus 로고    scopus 로고
    • Enzyme replacement therapy for the management of the mucopolysaccharidoses
    • COI: 1:CAS:528:DC%2BC3cXhtVWls7s%3D, PID: 20040314
    • Wraith JE (2009) Enzyme replacement therapy for the management of the mucopolysaccharidoses. Int J Clin Pharmacol Ther 47(Suppl 1):S63–S65
    • (2009) Int J Clin Pharmacol Ther , vol.47 , pp. 63-65
    • Wraith, J.E.1


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