Crisafulli S, Sultana J, Fontana A, Salvo F, Messina S, Trifirò G. Global epidemiology of Duchenne muscular dystrophy: an updated systematic review and meta-analysis. Orphanet J Rare Dis. 2020;15(1):1–20. https://doi.org/10.1186/s13023-020-01430-8.
Article
Google Scholar
Landfeldt E, Lindgren P, Guglieri M, Lochmuller H, Bushby K. Compliance to care guidelines for Duchenne muscular dystrophy in Italy. Neuromuscul Disord. 2018;28(1):100. https://doi.org/10.1016/j.nmd.2016.09.018.
Article
PubMed
Google Scholar
Landfeldt E, Thompson R, Sejersen T, McMillan HJ, Kirschner J, Lochmüller H. Life expectancy at birth in Duchenne muscular dystrophy: a systematic review and meta-analysis. Eur J Epidemiol. 2020;35(7):643–53. https://doi.org/10.1007/s10654-020-00613-8.
Article
PubMed
PubMed Central
Google Scholar
Uttley L, Carlton J, Woods HB, Brazier J. A review of quality of life themes in Duchenne muscular dystrophy for patients and carers. Health Qual Life Outcomes. 2018;16(1):237. https://doi.org/10.1186/s12955-018-1062-0.
Article
PubMed
PubMed Central
Google Scholar
Martinsen B, Dreyer P. Dependence on care experienced by people living with Duchenne muscular dystrophy and spinal cord injury. J Neurosci Nurs. 2012;44(2):82–90. https://doi.org/10.1097/JNN.0b013e3182477a62.
Article
PubMed
Google Scholar
Landfeldt E, Edstrom J, Buccella F, Kirschner J, Lochmuller H. Duchenne muscular dystrophy and caregiver burden: a systematic review. Dev Med Child Neurol. 2018;60(10):987–96. https://doi.org/10.1111/dmcn.13934.
Article
PubMed
Google Scholar
Pangalila RF, van den Bos GA, Stam HJ, van Exel NJ, Brouwer WB, Roebroeck ME. Subjective caregiver burden of parents of adults with Duchenne muscular dystrophy. Disabil Rehabil. 2012;34(12):988–96. https://doi.org/10.3109/09638288.2011.628738.
Article
PubMed
Google Scholar
Page TE, Farina N, Brown A, Daley S, Bowling A, Basset T, et al. Instruments measuring the disease-specific quality of life of family carers of people with neurodegenerative diseases: a systematic review. BMJ Open. 2017;7(3): e013611. https://doi.org/10.1136/bmjopen-2016-013611.
Article
PubMed
PubMed Central
Google Scholar
NICE [National Institute for Health and Care Excellence]. Guide to the methods of technology appraisal. London, UK: National Institute of Health and Care Excellence; 2013. https://www.nice.org.uk/process/pmg9/resources/guide-to-the-methods-of-technology-appraisal-2013-pdf-2007975843781. Accessed 16 Nov 2021.
Pennington B, Wong R. Modelling carer Health-related Quality of Life in NICE Technology Appraisals and Highly Specialised Technologies. Sheffield: Decision Support Unit. 2019. http://nicedsu.org.uk/wp-content/uploads/2019/07/2019-04-03-NICE-carer-HRQL-v-2-0-clean.pdf. Accessed 16 Nov 2021.
Mokkink LB, Terwee CB, Patrick DL, Alonso J, Stratford PW, Knol DL, et al. The COSMIN study reached international consensus on taxonomy, terminology, and definitions of measurement properties for health-related patient-reported outcomes. J Clin Epidemiol. 2010;63(7):737–45. https://doi.org/10.1016/j.jclinepi.2010.02.006.
Article
PubMed
Google Scholar
Terwee CB, Prinsen C, Chiarotto A, De Vet H, Bouter LM, Alonso J, et al. COSMIN methodology for assessing the content validity of PROMs–user manual. Amsterdam: VU University Medical Center. 2018. https://www.cosmin.nl/wp-content/uploads/COSMIN-methodology-for-content-validity-user-manual-v1.pdf. Accessed 16 Nov 2021.
Chiarotto A, Ostelo RW, Boers M, Terwee CB. A systematic review highlights the need to investigate the content validity of patient-reported outcome measures for physical functioning in patients with low back pain. J Clin Epidemiol. 2018;95:73–93. https://doi.org/10.1016/j.jclinepi.2017.11.005.
Article
PubMed
Google Scholar
Prinsen CA, Vohra S, Rose MR, Boers M, Tugwell P, Clarke M, et al. How to select outcome measurement instruments for outcomes included in a “Core Outcome Set”—a practical guideline. Trials. 2016;17(1):449. https://doi.org/10.1186/s13063-016-1555-2.
Article
PubMed
PubMed Central
Google Scholar
Mokkink LB, Prinsen C, Patrick DL, Alonso J, Bouter LM, De Vet H, et al. COSMIN methodology for systematic reviews of patient-reported outcome measures (PROMs). User manual. 2018. https://www.cosmin.nl/wp-content/uploads/COSMIN-syst-review-for-PROMs-manual_version-1_feb-2018.pdf. Accessed 16 Nov 2021.
Carlton J, Leaviss J, Pouwer F, Hendrieckx C, Broadley MM, Clowes M, et al. The suitability of patient-reported outcome measures used to assess the impact of hypoglycaemia on quality of life in people with diabetes: a systematic review using COSMIN methods. Diabetologia. 2021;64(6):1213–25. https://doi.org/10.1007/s00125-021-05382-x.
Article
PubMed
PubMed Central
Google Scholar
Rezai M, Kolne K, Bui S, Lindsay S. Measures of workplace inclusion: a systematic review using the COSMIN methodology. J Occup Rehabil. 2020;30(3):420–54. https://doi.org/10.1007/s10926-020-09872-4.
Article
PubMed
Google Scholar
Ortega-Avila AB, Cervera-Garvi P, Ramos-Petersen L, Chicharro-Luna E, Gijon-Nogueron G. Patient-reported outcome measures for patients with diabetes mellitus associated with foot and ankle pathologies: a systematic review. J Clin Med. 2019;8(2):146. https://doi.org/10.3390/jcm8020146.
Article
PubMed Central
Google Scholar
Craxford S, Deacon C, Myint Y, Ollivere B. Assessing outcome measures used after rib fracture: a COSMIN systematic review. Injury. 2019;50(11):1816–25. https://doi.org/10.1016/j.injury.2019.07.002.
Article
PubMed
Google Scholar
Powell PA, Carlton J, Woods HB, Mazzone P. Measuring quality of life in Duchenne muscular dystrophy: a systematic review of the content and structural validity of commonly used instruments. Health Qual Life Outcomes. 2020;18(1):263. https://doi.org/10.1186/s12955-020-01511-z.
Article
PubMed
PubMed Central
Google Scholar
Powell PA, Carlton J, Rowen D, Chandler F, Guglieri M, Brazier JE. Development of a new quality of life measure for duchenne muscular dystrophy using mixed methods: the DMD-QoL. Neurology. 2021;96(19):e2438–50. https://doi.org/10.1212/WNL.0000000000011896.
Article
CAS
PubMed
PubMed Central
Google Scholar
van Groenou MIB, De Boer A. Providing informal care in a changing society. Eur J Ageing. 2016;13(3):271–9. https://doi.org/10.1007/s10433-016-0370-7.
Article
Google Scholar
Bann CM, Abresch RT, Biesecker B, Conway KC, Heatwole C, Peay H, et al. Measuring quality of life in muscular dystrophy. Neurology. 2015;84(10):1034–42. https://doi.org/10.1212/WNL.0000000000001336.
Article
PubMed
PubMed Central
Google Scholar
Page MJ, McKenzie JE, Bossuyt PM, Boutron I, Hoffmann TC, Mulrow CD, The PRISMA, et al. statement: an updated guideline for reporting systematic reviews. BMJ. 2020;2021:372. https://doi.org/10.1136/bmj.n71.
Article
Google Scholar
Mackintosh A, Comabella C, Haid M, Gibbons E, Roberts N, Fitzpatrick R. PROM group construct and instrument type filters 2010. https://cosmin.nl/wp-content/uploads/prom-search-filter-oxford-2010.pdf. Accessed 16 Nov 2021.
Terwee CB, Prinsen CA, Ricci Garotti MG, Suman A, de Vet HC, Mokkink LB. The quality of systematic reviews of health-related outcome measurement instruments. Qual Life Res. 2016;25(4):767–79. https://doi.org/10.1007/s11136-015-1122-4.
Article
CAS
PubMed
Google Scholar
Papaioannou D, Sutton A, Carroll C, Booth A, Wong R. Literature searching for social science systematic reviews: consideration of a range of search techniques. Health Info Libr J. 2010;27(2):114–22. https://doi.org/10.1111/j.1471-1842.2009.00863.x.
Article
PubMed
Google Scholar
Mokkink LB, De Vet HC, Prinsen CA, Patrick DL, Alonso J, Bouter LM, et al. COSMIN risk of bias checklist for systematic reviews of patient-reported outcome measures. Qual Life Res. 2018;27(5):1171–9. https://doi.org/10.1007/s11136-017-1765-4.
Article
CAS
PubMed
Google Scholar
Guyatt GH, Oxman AD, Vist GE, Kunz R, Falck-Ytter Y, Alonso-Coello P, et al. GRADE: an emerging consensus on rating quality of evidence and strength of recommendations. BMJ. 2008;336(7650):924–6. https://doi.org/10.1136/bmj.39489.470347.AD.
Article
PubMed
PubMed Central
Google Scholar
Landis JR, Koch GG. The measurement of observer agreement for categorical data. Biometrics. 1977;33:159–74.
Article
CAS
PubMed
Google Scholar
Landfeldt E, Lindgren P, Bell CF, Guglieri M, Straub V, Lochmuller H, et al. Quantifying the burden of caregiving in Duchenne muscular dystrophy. J Neurol. 2016;263(5):906–15. https://doi.org/10.1007/s00415-016-8080-9.
Article
PubMed
PubMed Central
Google Scholar
Jackson JL, Korth CX, Leslie CE, Cotto J, Mah ML, Hor K, et al. Health-related quality of life and emotional distress among mothers of sons with muscular dystrophy as compared to sex- and age group-matched controls. J Child Neurol. 2021;36(3):177–85. https://doi.org/10.1177/0883073820962927.
Article
PubMed
Google Scholar
Lue YJ, Chen SS, Lu YM. Factors affecting the health-related quality of life of caregivers of patients with muscular dystrophy. J Neurol. 2018;265(7):1548–56. https://doi.org/10.1007/s00415-018-8878-8.
Article
PubMed
Google Scholar
Im SH, Lee SC, Moon JH, Park ES, Park YG. Quality of life for primary caregivers of muscular dystrophy patients in South Korea. Chin Med J (Engl). 2010;123(4):452–7.
Google Scholar
Thomas PT, Rajaram P, Nalini A. Psychosocial challenges in family caregiving with children suffering from Duchenne muscular dystrophy. Health Soc Work. 2014;39(3):144–52. https://doi.org/10.1093/hsw/hlu027.
Article
PubMed
Google Scholar
Chen JY, Clark MJ. Family function in families of children with Duchenne muscular dystrophy. Fam Community Health. 2007;30(4):296–304. https://doi.org/10.1097/01.FCH.0000290542.10458.f8.
Article
PubMed
Google Scholar
Chen JY. Mediators affecting family function in families of children with Duchenne muscular dystrophy. Kaohsiung J Med Sci. 2008;24(10):514–22. https://doi.org/10.1016/S1607-551X(09)70010-5.
Article
PubMed
Google Scholar
Chen J-Y, Clark M-J. Family resources and parental health in families of children with Duchenne muscular dystrophy. J Nurs Res. 2010;18(4):239–48. https://doi.org/10.1097/JNR.0b013e3181fbe37b.
Article
PubMed
Google Scholar
Chen J-Y, Yen M-H, Lin Y-H, Liu M-C, Chen H-S, Hu S-H, et al. Testing the family health promotion model for family having children with Duchenne muscular dystrophy/spinal muscular atrophy. Adv Neurodev Disord. 2018;2(4):391–401. https://doi.org/10.1007/s41252-018-0067-3.
Article
Google Scholar
Chen JY, Yen MH, Lin YH, Liu MC, Chen HS, et al. Predictors of Family Function in DMD and SMA Family. SOJ Nur Health Care. 2015;1(1):1–9. https://doi.org/10.15226/2471-6529/1/1/00109.
Article
Google Scholar
Linertová R, González-Guadarrama J, Serrano-Aguilar P, Posada-De-la-Paz M, Péntek M, Iskrov G, Ballester M. Schooling of children with rare diseases and disability in Europe. Int J Disabil Dev Educ. 2019;66(4):362–73. https://doi.org/10.1080/1034912X.2018.1562159.
Article
Google Scholar
Cavazza M, Kodra Y, Armeni P, De Santis M, López-Bastida J, Linertová R, et al. Social/economic costs and health-related quality of life in patients with Duchenne muscular dystrophy in Europe. Eur J Health Econ. 2016;17(1):19–29. https://doi.org/10.1007/s10198-016-0782-5.
Article
PubMed
Google Scholar
Landfeldt E, Lindgren P, Bell CF, Schmitt C, Guglieri M, Straub V, et al. The burden of Duchenne muscular dystrophy: an international, cross-sectional study. Neurology. 2014;83(6):529–36. https://doi.org/10.1212/WNL.0000000000000669.
Article
PubMed
PubMed Central
Google Scholar
Kenneson A, Bobo JK. The effect of caregiving on women in families with Duchenne/Becker muscular dystrophy. Health Soc Care Community. 2010;18(5):520–8. https://doi.org/10.1111/j.1365-2524.2010.00930.x.
Article
PubMed
Google Scholar
Nozoe KT, Kim LJ, Polesel DN, Hirotsu C, Souza AL, Hachul H, et al. Sleep pattern and spectral analysis of caregiver-mothers of sons with Duchenne muscular dystrophy, and an examination of differences between carriers and non-carriers. Sleep Med. 2017;32:114–21. https://doi.org/10.1016/j.sleep.2016.11.020.
Article
PubMed
Google Scholar
Magliano L, D’Angelo MG, Vita G, Pane M, D’Amico A, Balottin U, et al. Psychological and practical difficulties among parents and healthy siblings of children with Duchenne vs. Becker muscular dystrophy: an Italian comparative study. Acta Myol. 2014;33(3):136–43.
PubMed
PubMed Central
Google Scholar
Magliano L, Patalano M, Sagliocchi A, Scutifero M, Zaccaro A, D’angelo MG, et al. Burden, professional support, and social network in families of children and young adults with muscular dystrophies. Muscle Nerve. 2015;52(1):13–21. https://doi.org/10.1002/mus.24503.
Article
PubMed
PubMed Central
Google Scholar
Nozoe KT, Hachul H, Hirotsu C, Polesel DN, Moreira GA, Tufik S, et al. The relationship between sexual function and quality of sleep in caregiving mothers of sons with duchenne muscular dystrophy. Sex Med. 2014;2(3):133–40. https://doi.org/10.1002/sm2.29.
Article
CAS
PubMed
PubMed Central
Google Scholar
Liang R, Chan SHS, Ho FKW, Tang OC, Cherk SWW, Ip P, et al. Health-related quality of life in Chinese boys with Duchenne muscular dystrophy and their families. J Child Health Care. 2019;23(3):495–506. https://doi.org/10.1177/1367493519857423.
Article
PubMed
Google Scholar
Tapawan SJC, Wang FS, Lee MW, Chua AQ, Lin JB, Han V, et al. Perspectives on palliative care among Duchenne muscular dystrophy patients and their families in Singapore. Ann Acad Med Singap. 2020;49(2):72–7.
Article
PubMed
Google Scholar
Peay HL, Meiser B, Kinnett K, Furlong P, Porter K, Tibben A. Mothers’ psychological adaptation to Duchenne/Becker muscular dystrophy. Eur J Hum Genet. 2016;24(5):633–7. https://doi.org/10.1038/ejhg.2015.189.
Article
CAS
PubMed
Google Scholar
Nozoe KT, Polesel DN, Moreira GA, Pires GN, Akamine RT, Tufik S, et al. Sleep quality of mother-caregivers of Duchenne muscular dystrophy patients. Sleep Breath. 2016;20(1):129–34. https://doi.org/10.1007/s11325-015-1196-9.
Article
PubMed
Google Scholar
Reid DT, Renwick RM. Relating familial stress to the psychosocial adjustment of adolescents with Duchenne muscular dystrophy. Int J Rehabil Res. 2001;24(2):83–93. https://doi.org/10.1097/00004356-200106000-00001.
Article
CAS
PubMed
Google Scholar
Renwick RM, Reid DT. Life satisfaction of parents of adolescents with Duchenne muscular dystrophy: validation of a new instrument. Occup Therapy J Res. 1992;12(5):296–312. https://doi.org/10.1177/153944929201200503.
Article
Google Scholar
Ozyurt G, Bayram E, Karaoglu P, Kurul SH, Yis U. Quality of life and sleep in children diagnosed with Duchenne muscular dystrophy and their mothers’ level of anxiety: a case control study. Dusunen Adam J of Psychiatry Neurol Sci. 2015;28:362–8. https://doi.org/10.5350/DAJPN2015280412.
Article
Google Scholar
Thompson RJ Jr, Zeman JL, Fanurik D, Sirotkin-roses M. The role of parent stress and coping and family functioning in parent and child adjustment to Duchenne muscular dystrophy. J Clin Psychol. 1992;48(1):11–9. https://doi.org/10.1002/1097-4679(199201)48:1%3c11::aid-jclp2270480103%3e3.0.co;2-4.
Article
PubMed
Google Scholar
de Oliveira LC, Eduardo IM, Souza TF, de Medeiros LG, Prudente COM, Ribeiro MFM. Quality of life of family caregivers of patients with Duchenne muscular dystrophy. J Health Sci. 2020;22(1):56–60. https://doi.org/10.17921/2447-8938.2020v22n1p56-60.
Article
Google Scholar
de Moura MC, Wutzki HC, Voos MC, Resende MB, Reed UC, Hasue RH. Is functional dependence of Duchenne muscular dystrophy patients determinant of the quality of life and burden of their caregivers? Arq Neuropsiquiatr. 2015;73(1):52–7. https://doi.org/10.1590/0004-282X20140194.
Article
PubMed
Google Scholar
Eduardo IM, de Oliveira LC, Ribeiro MFM, Prudente COM. Burden of caregivers of patients with duchenne muscular dystrophy: relationship to functional capacity/Sobrecarga de cuidadores de pacientes com Distrofia Muscular de Duchenne: relação com a capacidade funcional. Revista de Pesquisa Cuidado é Fundamental Online. 2021;2021(13):547–52.
Article
Google Scholar
Landfeldt E, Mayhew A, Straub V, Bushby K, Lochmuller H, Lindgren P. Psychometric properties of the Zarit Caregiver Burden Interview administered to caregivers to patients with Duchenne muscular dystrophy: a Rasch analysis. Disabil Rehabil. 2019;41(8):966–73. https://doi.org/10.1080/09638288.2017.1416501.
Article
PubMed
Google Scholar
Herdman M, Gudex C, Lloyd A, Janssen M, Kind P, Parkin D, et al. Development and preliminary testing of the new five-level version of EQ-5D (EQ-5D-5L). Qual Life Res. 2011;20(10):1727–36. https://doi.org/10.1007/s11136-011-9903-x.
Article
CAS
PubMed
PubMed Central
Google Scholar
Beck AT, Ward CH, Mendelson M, Mock J, Erbaugh J. An inventory for measuring depression. Arch Gen Psychiatry. 1961;4(6):561–71. https://doi.org/10.1001/archpsyc.1961.01710120031004.
Article
CAS
PubMed
Google Scholar
Brouwer WB, van Exel NJ, van Gorp B, Redekop WK. The CarerQol instrument: a new instrument to measure care-related quality of life of informal caregivers for use in economic evaluations. Qual Life Res. 2006;15(6):1005–21. https://doi.org/10.1007/s11136-005-5994-6.
Article
CAS
PubMed
Google Scholar
Robinson B, Thurnher M. Taking care of aged parents: a family cycle transition. Gerontologist. 1979;19(6):586–93. https://doi.org/10.1093/geront/19.6.586.
Article
CAS
PubMed
Google Scholar
Robinson BC. Validation of a Caregiver Strain Index. J Gerontol. 1983;38(3):344–8. https://doi.org/10.1093/geronj/38.3.344.
Article
CAS
PubMed
Google Scholar
Al-Janabi H, Frew E, Brouwer W, Rappange D, Van Exel J. The inclusion of positive aspects of caring in the Caregiver Strain Index: tests of feasibility and validity. Int J Nurs Stud. 2010;47(8):984–93. https://doi.org/10.1016/j.ijnurstu.2009.12.015.
Article
PubMed
Google Scholar
Tebb S. An aid to empowerment: a caregiver well-being scale. Health Soc Work. 1995;20(2):87–92. https://doi.org/10.1093/hsw/20.2.87.
Article
CAS
PubMed
Google Scholar
Parkerson GR. User’s guide for Duke health measures. Durham: Department of Community and Family Medicine, Duke University Medical Center; 2002.
Google Scholar
Parkerson GR Jr, Broadhead WE, Tse CK. Development of the 17-item Duke Health Profile. Fam Pract. 1991;8(4):396–401. https://doi.org/10.1093/fampra/8.4.396.
Article
PubMed
Google Scholar
Parkerson GR Jr, Broadhead WE, Tse CK. The Duke Health Profile. A 17-item measure of health and dysfunction. Med Care. 1990;28(11):1056–72. https://doi.org/10.1097/00005650-199011000-00007.
Article
PubMed
Google Scholar
Parkerson GR Jr, Gehlbach SH, Wagner EH, James SA, Clapp NE, Muhlbaier LH. The Duke-UNC Health Profile: an adult health status instrument for primary care. Med Care. 1981;19(8):806–28. https://doi.org/10.1097/00005650-198108000-00002.
Article
PubMed
Google Scholar
Brooks R, EuroQol. EuroQol: the current state of play. Health Policy. 1996;37(1):53–72. https://doi.org/10.1016/0168-8510(96)00822-6.
Article
CAS
PubMed
Google Scholar
The EuroQol Group. EuroQol-a new facility for the measurement of health-related quality of life. Health Policy. 1990;16(3):199–208. https://doi.org/10.1016/0168-8510(90)90421-9.
Article
Google Scholar
Johns MW. A new method for measuring daytime sleepiness: the Epworth sleepiness scale. Sleep. 1991;14(6):540–5. https://doi.org/10.1093/sleep/14.6.540.
Article
CAS
PubMed
Google Scholar
The ENRICHD Investigators. Enhancing recovery in coronary heart disease patients (ENRICHD): study design and methods. The ENRICHD investigators. Am Heart J. 2000;139(1 Pt 1):1–9. https://doi.org/10.1016/s0002-8703(00)90301-6.
Article
Google Scholar
Mitchell PH, Powell L, Blumenthal J, Norten J, Ironson G, Pitula CR, et al. A short social support measure for patients recovering from myocardial infarction: the ENRICHD Social Support Inventory. J Cardiopulm Rehabil. 2003;23(6):398–403. https://doi.org/10.1097/00008483-200311000-00001.
Article
PubMed
Google Scholar
Smilkstein G. The family APGAR: a proposal for a family function test and its use by physicians. J Fam Pract. 1978;6(6):1231–9.
CAS
PubMed
Google Scholar
Morosini P, Roncone R, Veltro F, Palomba U, Casacchia M. Routine assessment tool in psychiatry: a case of questionnaire of family attitudes and burden. Italian J Psy Behavioural Sciences. 1991;1(1):95–101.
Google Scholar
Magliano L, Fadden G, Madianos M, de Almeida JM, Held T, Guarneri M, et al. Burden on the families of patients with schizophrenia: results of the BIOMED I study. Soc Psychiatry Psychiatr Epidemiol. 1998;33(9):405–12. https://doi.org/10.1007/s001270050073.
Article
CAS
PubMed
Google Scholar
Rosen R, Brown C, Heiman J, Leiblum S, Meston C, Shabsigh R, et al. The Female Sexual Function Index (FSFI): a multidimensional self-report instrument for the assessment of female sexual function. J Sex Marital Ther. 2000;26(2):191–208. https://doi.org/10.1080/009262300278597.
Article
CAS
PubMed
Google Scholar
Zigmond AS, Snaith RP. The hospital anxiety and depression scale. Acta Psychiatr Scand. 1983;67(6):361–70. https://doi.org/10.1111/j.1600-0447.1983.tb09716.x.
Article
CAS
PubMed
Google Scholar
Kessler RC, Andrews G, Colpe LJ, Hiripi E, Mroczek DK, Normand SL, et al. Short screening scales to monitor population prevalences and trends in non-specific psychological distress. Psychol Med. 2002;32(6):959–76. https://doi.org/10.1017/s0033291702006074.
Article
CAS
PubMed
Google Scholar
Biesecker BB, Erby LH, Woolford S, Adcock JY, Cohen JS, Lamb A, et al. Development and validation of the Psychological Adaptation Scale (PAS): use in six studies of adaptation to a health condition or risk. Patient Educ Couns. 2013;93(2):248–54. https://doi.org/10.1016/j.pec.2013.05.006.
Article
PubMed
Google Scholar
Varni JW, Sherman SA, Burwinkle TM, Dickinson PE, Dixon P. The PedsQL Family Impact Module: preliminary reliability and validity. Health Qual Life Outcomes. 2004;2:55. https://doi.org/10.1186/1477-7525-2-55.
Article
PubMed
PubMed Central
Google Scholar
Lipinski SE, Lipinski MJ, Biesecker LG, Biesecker BB. Uncertainty and perceived personal control among parents of children with rare chromosome conditions: the role of genetic counseling. Am J Med Genet C Semin Med Genet. 2006;142(4):232–40. https://doi.org/10.1002/ajmg.c.30107.
Article
Google Scholar
Buysse DJ, Reynolds CF 3rd, Monk TH, Berman SR, Kupfer DJ. The Pittsburgh Sleep Quality Index: a new instrument for psychiatric practice and research. Psychiatry Res. 1989;28(2):193–213. https://doi.org/10.1016/0165-1781(89)90047-4.
Article
CAS
PubMed
Google Scholar
Cohen S. Perceived stress in a probability sample of the United States. In: Spacapan S, Oskamp S, editors. The social psychology of health. Thousand Oaks: Sage Publications, Inc.; 1988. p. 31–67.
Google Scholar
Cohen S, Kamarck T, Mermelstein R. A global measure of perceived stress. J Health Soc Behav. 1983;24(4):385–96.
Article
CAS
PubMed
Google Scholar
Holroyd J. The Questionnaire on Resources and Stress: An instrument to measure family response to a handicapped family member. J Community Psychol. 1974;2(1):92–4. https://doi.org/10.1002/1520-6629(197401)2:1%3c92::AID-JCOP2290020133%3e3.0.CO;2-A.
Article
Google Scholar
Holroyd J. Questionnaire on resources and stress: For families with chronically ill or handicapped members. Clinical Psychology Publishing Company Brandon. 1987
Derogatis LR. SCL-90-R : symptom checklist-90-R : administration, scoring & procedures manual. Minneapolis: National Computer Systems, Inc.; 1994.
Google Scholar
Derogatis LR, Lipman RS, Covi L. SCL-90: an outpatient psychiatric rating scale–preliminary report. Psychopharmacol Bull. 1973;9(1):13–28.
CAS
PubMed
Google Scholar
Ware J, Kolinski M, Keller S. How to score the SF-12 physical and mental health summaries: a user’s manual. Boston: The Health Institute, New England Medical Centre; 1995.
Google Scholar
Ware J Jr, Kosinski M, Keller SD. A 12-Item Short-Form Health Survey: construction of scales and preliminary tests of reliability and validity. Med Care. 1996;34(3):220–33. https://doi.org/10.1097/00005650-199603000-00003.
Article
PubMed
Google Scholar
Jenkinson C, Stewart-Brown S, Petersen S, Paice C. Assessment of the SF-36 version 2 in the United Kingdom. J Epidemiol Community Health. 1999;53(1):46–50. https://doi.org/10.1136/jech.53.10.651.
Article
CAS
PubMed
PubMed Central
Google Scholar
Ware JE Jr. SF-36 health survey update. Spine. 2000;25(24):3130–9. https://doi.org/10.1097/00007632-200012150-00008.
Article
PubMed
Google Scholar
Ware JE Jr, Sherbourne CD. The MOS 36-item short-form health survey (SF-36): I. Conceptual framework and item selection. Med Care. 1992;30:473–83.
Article
PubMed
Google Scholar
Hays RD, Sherbourne CD, Mazel RM. The RAND 36-item Health Survey 1.0. Health Econ. 1993;2(3):217–27. https://doi.org/10.1002/hec.4730020305.
Article
CAS
PubMed
Google Scholar
Spielberger CD. STAI manual. Calf: Consulting Psychologist; 1970.
Google Scholar
Diener E, Emmons RA, Larsen RJ, Griffin S. The Satisfaction with Life Scale. J Pers Assess. 1985;49(1):71–5. https://doi.org/10.1207/s15327752jpa4901_13.
Article
CAS
PubMed
Google Scholar
WHOQOL Group. Development of the WHOQOL: rationale and current status. Int J Ment Health. 1994;23(3):24–56. https://doi.org/10.1080/00207411.1994.11449286.
Article
Google Scholar
WHOQOL Group. The World Health Organization quality of life assessment (WHOQOL): position paper from the World Health Organization. Soc Sci Med. 1995;41(10):1403–9. https://doi.org/10.1016/0277-9536(95)00112-k.
Article
Google Scholar
WHOQOL Group. Development of the World Health Organization WHOQOL-BREF quality of life assessment. Psychol Med. 1998;28(3):551–8. https://doi.org/10.1017/s0033291798006667.
Article
Google Scholar
Skevington SM, Arthur PM, Somerset M. Developing items for the WHOQOL: an investigation of contemporary beliefs about quality of life related to health in Britain. Br J Health Psychol. 1997;2(1):55–72. https://doi.org/10.1111/j.2044-8287.1997.tb00523.x.
Article
Google Scholar
Bédard M, Molloy DW, Squire L, Dubois S, Lever JA, O’Donnell M. The Zarit Burden Interview: a new short version and screening version. Gerontologist. 2001;41(5):652–7. https://doi.org/10.1093/geront/41.5.652.
Article
PubMed
Google Scholar
Zarit SH, Reever KE, Bach-Peterson J. Relatives of the impaired elderly: correlates of feelings of burden. Gerontologist. 1980;20(6):649–55. https://doi.org/10.1093/geront/20.6.649.
Article
CAS
PubMed
Google Scholar
Prinsen CAC, Mokkink LB, Bouter LM, Alonso J, Patrick DL, de Vet HCW, et al. COSMIN guideline for systematic reviews of patient-reported outcome measures. Qual Life Res. 2018;27(5):1147–57. https://doi.org/10.1007/s11136-018-1798-3.
Article
CAS
PubMed
PubMed Central
Google Scholar
Terwee CB, Prinsen CAC, Chiarotto A, Westerman MJ, Patrick DL, Alonso J, et al. COSMIN methodology for evaluating the content validity of patient-reported outcome measures: a Delphi study. Qual Life Res. 2018;27(5):1159–70. https://doi.org/10.1007/s11136-018-1829-0.
Article
CAS
PubMed
PubMed Central
Google Scholar
Grossoehme D, Thienprayoon R, Sawnani H, Rossman I, Mosher K, Friebert S. Relating Physical Decline with Reevaluating Goals of Care: A Qualitative Study of Young Men with Duchenne Muscular Dystrophy and Their Caregivers (RP405). J Pain Symptom Manage. 2020;60(1):216–7. https://doi.org/10.1016/j.jpainsymman.2020.04.073.
Article
Google Scholar
Molloy H, Beesley V, Ghosh D, Elliot M. NIV in Duchenne Muscular Dystrophy: A qualitative study. Eur Respir J. 2017;50(suppl 61):PA1890. https://doi.org/10.1183/1393003.congress-2017.
Article
Google Scholar
Kauffmann E. Parents experienced cycles of defining and managing adversity in caring for a child with a chronic progressive illness. Evid Based Nurs. 1998;1(1):28. https://doi.org/10.1136/ebn.1.1.28.
Article
Google Scholar
Williams K, Davidson I, Rance M, Buesch K, Acaster S. A qualitative study on the impact of caring for an ambulatory individual with nonsense mutation Duchenne muscular dystrophy. J Patient Rep Outcomes. 2021;5(1):71. https://doi.org/10.1186/s41687-021-00344-8.
Article
PubMed
PubMed Central
Google Scholar