Otwarty dostęp

Myotonic dystrophy Type 1: exploring the health care experiences of people living with DM1. A Research Protocol


Zacytuj

Anderson, J., Tay, G., Robinson, P., Denby, G., Robinson, J., Douglas, J., & Curtin, D. (2018). Improving service delivery for neuromuscular diseases: a survey of consumers at a tertiary Australian hospital. Internal Medicine Journal, 48(12), 1520-1524. doi:10.1111/imj.14123 Anderson, J. Tay, G. Robinson, P. Denby, G. Robinson, J. Douglas, J. Curtin, D. ( 2018 ). Improving service delivery for neuromuscular diseases: a survey of consumers at a tertiary Australian hospital . Internal Medicine Journal , 48 ( 12 ), 1520 - 1524 . doi:10.1111/imj.1412310.1111/imj.14123 Search in Google Scholar

Ashizawa, T., Gagnon, C., Groh, W. J., Gutmann, L., Johnson, N. E., Meola, G., . . . Winblad, S. (2018). Consensus-based care recommendations for adults with myotonic dystrophy type 1. Neurol Clin Pract, 8(6), 507-520. doi:10.1212/cpj.0000000000000531 Ashizawa, T. Gagnon, C. Groh, W. J. Gutmann, L. Johnson, N. E. Meola, G., . . . Winblad, S. ( 2018 ). Consensus-based care recommendations for adults with myotonic dystrophy type 1 . Neurol Clin Pract , 8 ( 6 ), 507 - 520 . doi:10.1212/cpj.0000000000000531 10.1212/CPJ.0000000000000531 Search in Google Scholar

Bandura, A. (1978). Self-efficacy: Toward a unifying theory of behavioral change. Advances in Behaviour Research and Therapy, 1(4), 139-161. doi:10.1016/0146-6402(78) 90002-4 Bandura, A. ( 1978 ). Self-efficacy: Toward a unifying theory of behavioral change . Advances in Behaviour Research and Therapy , 1 ( 4 ), 139 - 161 . doi:10.1016/0146-6402(78)90002-4 10.1016/0146-6402(78)90002-4 Search in Google Scholar

Boentert, M., Cao, M., Mass, D., De Mattia, E., Falcier, E., Goncalves, M., . . . Sansone, V. A. (2020). Consensus-Based Care Recommendations for Pulmonologists Treating Adults with Myotonic Dystrophy Type 1. Respiration, 99(4), 360-368. doi:10.1159/000505634 Boentert, M. Cao, M. Mass, D. De Mattia, E. Falcier, E. Goncalves, M., . . . Sansone, V. A. ( 2020 ). Consensus-Based Care Recommendations for Pulmonologists Treating Adults with Myotonic Dystrophy Type 1 . Respiration , 99 ( 4 ), 360 - 368 . doi:10.1159/000505634 10.1159/00050563432299079 Search in Google Scholar

Bostrom, K., Ahlstrom, G., & Sunvisson, H. (2006). Being the next of kin of an adult person with muscular dystrophy. Clin Nurs Res, 15(2), 86-104; discussion 105-106. doi:10.1177/1054773805285706 Bostrom, K. Ahlstrom, G. Sunvisson, H. ( 2006 ). Being the next of kin of an adult person with muscular dystrophy . Clin Nurs Res , 15 ( 2 ), 86 - 104 ; discussion 105-106. doi:10.1177/1054773805285706 10.1177/105477380528570616638828 Search in Google Scholar

Chouinard, M. C. M., J.; Lavoic, M.; Leclerc, N.; Larouche, A.; Bouchard, N.; Jean, S.; Gagnon, C. (2008). User Guide: Integrated Care Pathway Tool for the Myotonic Dystrophy Type 1 (DM1-ICP). Retrieved from https://www.myotonic.org/sites/default/files/ICP_English%20version_final.pdf Chouinard, M. C. M., J.; Lavoic, M.; Leclerc, N.; Larouche, A.; Bouchard, N.; Jean, S.; Gagnon, C. ( 2008 ). User Guide: Integrated Care Pathway Tool for the Myotonic Dystrophy Type 1 (DM1-ICP) . Retrieved from https://www.myotonic.org/sites/default/files/ICP_English%20version_final.pdf Search in Google Scholar

Creswell, J. W. (2013). Qualitative inquiry and research design: choosing among five approaches (3rd ed. ed.). Thousand Oaks, Calif.: SAGE Publications. Creswell, J. W. ( 2013 ). Qualitative inquiry and research design: choosing among five approaches (3rd ed. ed.) . Thousand Oaks, Calif. : SAGE Publications . Search in Google Scholar

Cup, E. H. C., Kinébanian, A., Satink, T., Pieterse, A. J., Hendricks, H. T., Oostendorp, R. A. B., . . . van Engelen, B. G. M. (2011). Living with myotonic dystrophy; what can be learned from couples? a qualitative study. BMC Neurol, 11. doi:10.1186/1471-2377-11-86 Cup, E. H. C. Kinébanian, A. Satink, T. Pieterse, A. J. Hendricks, H. T. Oostendorp, R. A. B., . . . van Engelen, B. G. M. ( 2011 ). Living with myotonic dystrophy; what can be learned from couples? a qualitative study . BMC Neurol , 11 . doi:10.1186/1471-2377-11-86 10.1186/1471-2377-11-86315855221752270 Search in Google Scholar

De Antonio, M., Dogan, C., Hamroun, D., Mati, M., Zerrouki, S., Eymard, B., . . . Bassez, G. (2016). Unravelling the myotonic dystrophy type 1 clinical spectrum: A systematic registry-based study with implications for disease classification. Revue Neurologique, 172 (10), 572-580. doi:https://doi.org/10.1016/j.neurol.2016.08.003 De Antonio, M. Dogan, C. Hamroun, D. Mati, M. Zerrouki, S. Eymard, B., . . . Bassez, G. ( 2016 ). Unravelling the myotonic dystrophy type 1 clinical spectrum: A systematic registry-based study with implications for disease classification . Revue Neurologique , 172 ( 10 ), 572 - 580 . doi:https://doi.org/10.1016/j.neurol.2016.08.003 10.1016/j.neurol.2016.08.00327665240 Search in Google Scholar

Gagnon, C., Chouinard, M. C., Laberge, L., Veillette, S., Bégin, P., Breton, R., . . . Mathieu, J. (2010). Health supervision and anticipatory guidance in adult myotonic dystrophy type 1. Neuromuscular Disorders, 20 (12), 847-851. doi:https://doi.org/10.1016/j.nmd.2010.08.006 Gagnon, C. Chouinard, M. C. Laberge, L. Veillette, S. Bégin, P. Breton, R., . . . Mathieu, J. ( 2010 ). Health supervision and anticipatory guidance in adult myotonic dystrophy type 1 . Neuromuscular Disorders , 20 ( 12 ), 847 - 851 . doi:https://doi.org/10.1016/j.nmd.2010.08.006 10.1016/j.nmd.2010.08.00620884209 Search in Google Scholar

Groh, W. J., Groh, M. R., Shen, C., Monckton, D. G., Bodkin, C. L., & Pascuzzi, R. M. (2011). Survival and CTG repeat expansion in adults with myotonic dystrophy type 1. Muscle & Nerve, 43(5), 648-651. doi:10.1002/mus.21934 Groh, W. J. Groh, M. R. Shen, C. Monckton, D. G. Bodkin, C. L. Pascuzzi, R. M. ( 2011 ). Survival and CTG repeat expansion in adults with myotonic dystrophy type 1 . Muscle & Nerve , 43 ( 5 ), 648 - 651 . doi:10.1002/mus.21934 10.1002/mus.2193421484823 Search in Google Scholar

Hartley, S. E., Goodwin, P. C., & Goldbart, J. (2011). Experiences of attendance at a neuromuscular centre: perceptions of adults with neuromuscular disorders. Disabil Rehabil, 33 (12), 1022-1032. doi:10.3109/09638288.2010.520812 Hartley, S. E. Goodwin, P. C. Goldbart, J. ( 2011 ). Experiences of attendance at a neuromuscular centre: perceptions of adults with neuromuscular disorders . Disabil Rehabil , 33 ( 12 ), 1022 - 1032 . doi:10.3109/09638288.2010.520812 10.3109/09638288.2010.52081220883107 Search in Google Scholar

Jansen, G., Mahadevan, M., Amemiya, C., Wormskamp, N., Segers, B., Hendriks, W., . . . et al. (1992). Characterization of the myotonic dystrophy region predicts multiple protein isoform-encoding mRNAs. Nat Genet, 1 (4), 261-266. doi:10.1038/ng0792-261 Jansen, G. Mahadevan, M. Amemiya, C. Wormskamp, N. Segers, B. Hendriks, W. , . . . et al. ( 1992 ). Characterization of the myotonic dystrophy region predicts multiple protein isoform-encoding mRNAs . Nat Genet , 1 ( 4 ), 261 - 266 . doi:10.1038/ng0792-261 10.1038/ng0792-2611302022 Search in Google Scholar

LaDonna, K. A., Watling, C. J., Ray, S. L., Piechowicz, C., & Venance, S. L. (2017). Evolving Motivations: Patients’ and Caregivers’ Perceptions About Seeking Myotonic Dystrophy (DM1) and Huntington’s Disease Care. Qualitative Health Research, 27(11), 1727-1737. doi:10.1177/1049732317711901 LaDonna, K. A. Watling, C. J. Ray, S. L. Piechowicz, C. Venance, S. L. ( 2017 ). Evolving Motivations: Patients’ and Caregivers’ Perceptions About Seeking Myotonic Dystrophy (DM1) and Huntington’s Disease Care . Qualitative Health Research , 27 ( 11 ), 1727 - 1737 . doi:10.1177/1049732317711901 10.1177/104973231771190128799481 Search in Google Scholar

LaDonna, K. A., Watling, C. J., Ray, S. L., Piechowicz, C., & Venance, S. L. (2016). Myotonic Dystrophy and Huntington’s Disease Care: “We Like to Think We’re Making a Difference.” Canadian Journal of Neurological Sciences / Journal Canadien des Sciences Neurologiques, 43(5), 678-686. doi:10.1017/cjn.2016.257 LaDonna, K. A. Watling, C. J. Ray, S. L. Piechowicz, C. Venance, S. L. ( 2016 ). Myotonic Dystrophy and Huntington’s Disease Care: “We Like to Think We’re Making a Difference.” Canadian Journal of Neurological Sciences / Journal Canadien des Sciences Neurologiques , 43 ( 5 ), 678 - 686 . doi:10.1017/cjn.2016.257 10.1017/cjn.2016.25727670211 Search in Google Scholar

Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative research in psychology, 3(2), 77-101. doi:10.1191/1478088706qp063oa Braun, V. Clarke, V. ( 2006 ). Using thematic analysis in psychology . Qualitative research in psychology , 3 ( 2 ), 77 - 101 . doi:10.1191/1478088706qp063oa 10.1191/1478088706qp063oa Search in Google Scholar

Laberge, L., Veillette, S., Mathieu, J., Auclair, J., & Perron, M. (2007). The correlation of CTG repeat length with material and social deprivation in myotonic dystrophy. Clin Genet, 71(1), 59-66. doi:10.1111/j.1399-0004.2007.00732.x Laberge, L. Veillette, S. Mathieu, J. Auclair, J. Perron, M. ( 2007 ). The correlation of CTG repeat length with material and social deprivation in myotonic dystrophy . Clin Genet , 71 ( 1 ), 59 - 66 . doi:10.1111/j.1399-0004.2007.00732.x 10.1111/j.1399-0004.2007.00732.x17204048 Search in Google Scholar

Landfeldt, E., Nikolenko, N., Jimenez-Moreno, C., Cumming, S., Monckton, D. G., Faber, C. G., . . . Lochmüller, H. (2020). Activities of daily living in myotonic dystrophy type 1. Acta Neurol Scand, 141(5), 380-387. doi:10.1111/ane.13215 Landfeldt, E. Nikolenko, N. Jimenez-Moreno, C. Cumming, S. Monckton, D. G. Faber, C. G., . . . Lochmüller, H. ( 2020 ). Activities of daily living in myotonic dystrophy type 1 . Acta Neurol Scand , 141 ( 5 ), 380 - 387 . doi:10.1111/ane.13215 10.1111/ane.1321531889295 Search in Google Scholar

Lecordier, D., Cartron, E., & Jovic, L. (2017). Comprendre les personnes atteintes de la maladie de Steinert pour mieux les soigner. Recherche en Soins Infirmiers, 131(4), 13-28. doi:10.3917/rsi.131.0013 Lecordier, D. Cartron, E. Jovic, L. ( 2017 ). Comprendre les personnes atteintes de la maladie de Steinert pour mieux les soigner . Recherche en Soins Infirmiers , 131 ( 4 ), 13 - 28 . doi:10.3917/rsi.131.0013 10.3917/rsi.131.001329436800 Search in Google Scholar

Magliano, L., & Politano, L. (2016). Family context in muscular dystrophies: psychosocial aspects and social integration. Acta myologica : myopathies and cardiomyopathies : official journal of the Mediterranean Society of Myology, 35(2), 96-99. Retrieved from https://pubmed.ncbi.nlm.nih.gov/28344439 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5343746/ Magliano, L. Politano, L. ( 2016 ). Family context in muscular dystrophies: psychosocial aspects and social integration . Acta myologica : myopathies and cardiomyopathies : official journal of the Mediterranean Society of Myology , 35 ( 2 ), 96 - 99 . Retrieved from https://pubmed.ncbi.nlm.nih.gov/28344439 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5343746/ Search in Google Scholar

Malterud, K., Siersma, V. D., & Guassora, A. D. (2015). Sample Size in Qualitative Interview Studies: Guided by Information Power. Qualitative Health Research, 26(13), 1753-1760. doi:10.1177/1049732315617444 Malterud, K. Siersma, V. D. Guassora, A. D. ( 2015 ). Sample Size in Qualitative Interview Studies: Guided by Information Power . Qualitative Health Research , 26 ( 13 ), 1753 - 1760 . doi:10.1177/1049732315617444 10.1177/104973231561744426613970 Search in Google Scholar

Merleau-Ponty, M. 1945, (2013). Phenomenology of Perception. Florence:Taylor & Francis Group Routledge. http://myotonicdystrophy.com/http:/mytonicdystrophy.com/general-information/retrieved 06.11.2021 Merleau-Ponty, M. 1945, ( 2013 ). Phenomenology of Perception . Florence : Taylor & Francis Group Routledge . http://myotonicdystrophy.com/http:/mytonicdystrophy.com/general-information/retrieved 06.11.2021 10.4324/9780203720714 Search in Google Scholar

Nätterlund, B., & Ahlström, G. (1999). Problem-focused coping and satisfaction with activities of daily living in individuals with muscular dystrophy and postpolio syndrome. Scand J Caring Sci, 13(1), 26-32. Nätterlund, B. Ahlström, G. ( 1999 ). Problem-focused coping and satisfaction with activities of daily living in individuals with muscular dystrophy and postpolio syndrome . Scand J Caring Sci , 13 ( 1 ), 26 - 32 . 10.1111/j.1471-6712.1999.tb00511.x Search in Google Scholar

Peric, S., Vujnic, M., Dobricic, V., Marjanovic, A., Basta, I., Novakovic, I., . . . Rakocevic-Stojanovic, V. (2016). Five-year study of quality of life in myotonic dystrophy. Acta Neurol Scand, 134(5), 346-351. doi:10.1111/ane.12549 Peric, S. Vujnic, M. Dobricic, V. Marjanovic, A. Basta, I. Novakovic, I., . . . Rakocevic-Stojanovic, V. ( 2016 ). Five-year study of quality of life in myotonic dystrophy . Acta Neurol Scand , 134 ( 5 ), 346 - 351 . doi:10.1111/ane.12549 10.1111/ane.1254927696366 Search in Google Scholar

Raymond, K., Levasseur, M., Mathieu, J., & Gagnon, C. (2019). Progressive Decline in Daily and Social Activities: A 9-year Longitudinal Study of Participation in Myotonic Dystrophy Type 1. Archives of Physical Medicine and Rehabilitation, 100(9), 1629-1639. doi:https://doi.org/10.1016/j.apmr.2019.01.022 Raymond, K. Levasseur, M. Mathieu, J. Gagnon, C. ( 2019 ). Progressive Decline in Daily and Social Activities: A 9-year Longitudinal Study of Participation in Myotonic Dystrophy Type 1 . Archives of Physical Medicine and Rehabilitation , 100 ( 9 ), 1629 - 1639 . doi:https://doi.org/10.1016/j.apmr.2019.01.022 10.1016/j.apmr.2019.01.02230831092 Search in Google Scholar

Raymond, K., Levasseur, M., Chouinard, M. C., Mathieu, J., & Gagnon, C. (2016). Stanford Chronic Disease Self-Management Program in myotonic dystrophy: new opportunities for occupational therapists: Stanford Chronic Disease Self-Management Program dans la dystrophie myotonique : De nouvelles opportunités pour les ergothérapeutes. Can J Occup Ther, 83(3), 166-176. doi:10.1177/0008417416646130 Raymond, K. Levasseur, M. Chouinard, M. C. Mathieu, J. Gagnon, C. ( 2016 ). Stanford Chronic Disease Self-Management Program in myotonic dystrophy: new opportunities for occupational therapists: Stanford Chronic Disease Self-Management Program dans la dystrophie myotonique : De nouvelles opportunités pour les ergothérapeutes . Can J Occup Ther , 83 ( 3 ), 166 - 176 . doi:10.1177/0008417416646130 10.1177/000841741664613027231386 Search in Google Scholar

Sandelowski, M. (1995). Sample size in qualitative research. Res Nurs Health, 18(2), 179-183. doi:10.1002/nur.4770180211 Sandelowski, M. ( 1995 ). Sample size in qualitative research . Res Nurs Health , 18 ( 2 ), 179 - 183 . doi:10.1002/nur.4770180211 10.1002/nur.47701802117899572 Search in Google Scholar

Theadom, A., Rodrigues, M., Roxburgh, R., Balalla, S., Higgins, C., Bhattacharjee, R., . . . Feigin, V. (2014). Prevalence of Muscular Dystrophies: A Systematic Literature Review. Neuroepidemiology, 43(3-4), 259-268. doi:10.1159/000369343 Theadom, A. Rodrigues, M. Roxburgh, R. Balalla, S. Higgins, C. Bhattacharjee, R., . . . Feigin, V. ( 2014 ). Prevalence of Muscular Dystrophies: A Systematic Literature Review . Neuroepidemiology , 43 ( 3-4 ), 259 - 268 . doi:10.1159/000369343 10.1159/00036934325532075 Search in Google Scholar

Travlos, V., Bulsara, C., Patman, S., & Downs, J. (2016). A fine balance and a shared learning journey: Exploring healthcare engagement through the experiences of youth with Neuromuscular Disorders. NeuroRehabilitation, 39(4), 519-534. doi:10.3233/nre-161383 Travlos, V. Bulsara, C. Patman, S. Downs, J. ( 2016 ). A fine balance and a shared learning journey: Exploring healthcare engagement through the experiences of youth with Neuromuscular Disorders . NeuroRehabilitation , 39 ( 4 ), 519 - 534 . doi:10.3233/nre-161383 10.3233/NRE-16138327689611 Search in Google Scholar

Turner, C., & Hilton-Jones, D. (2010). The myotonic dystrophies: diagnosis and management. Journal of Neurology, Neurosurgery & Psychiatry, 81(4), 358-367. doi:10.1136/jnnp.2008.158261 Turner, C. Hilton-Jones, D. ( 2010 ). The myotonic dystrophies: diagnosis and management . Journal of Neurology, Neurosurgery & Psychiatry , 81 ( 4 ), 358 - 367 . doi:10.1136/jnnp.2008.158261 10.1136/jnnp.2008.15826120176601 Search in Google Scholar

White, M. (2020). Patient Input to Inform the Development of Central Nervous System Outcome Measures in Myotonic Dystrophy. Ther Innov Regul Sci. doi:10.1007/s43441-020-00117-3 White, M. ( 2020 ). Patient Input to Inform the Development of Central Nervous System Outcome Measures in Myotonic Dystrophy . Ther Innov Regul Sci. doi:10.1007/s43441-020-00117-3 10.1007/s43441-020-00117-3745889131970692 Search in Google Scholar

Yang, B.-H., Chung, C.-Y., & Li, Y.-S. (2018). Partnership Between Families of Children with Muscular Dystrophy and Health-care Professionals: From Parents’ Perspective. Asian nursing research, 12(2), 127-135. doi:10.1016/j.anr.2018.05.002 Yang, B.-H. Chung, C.-Y. Li, Y.-S. ( 2018 ). Partnership Between Families of Children with Muscular Dystrophy and Health-care Professionals: From Parents’ Perspective . Asian nursing research , 12 ( 2 ), 127 - 135 . doi:10.1016/j.anr.2018.05.002 10.1016/j.anr.2018.05.00229807201 Search in Google Scholar

eISSN:
2208-6781
Język:
Angielski
Częstotliwość wydawania:
2 razy w roku
Dziedziny czasopisma:
Medicine, Basic Medical Science, other