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Clare M. Donnelly, Rosaline M. Quinlivan, Aaron Herron & Christopher D. Graham. (2023) A systematic review and qualitative synthesis of the experiences of parents of individuals living with Duchenne muscular dystrophy. Disability and Rehabilitation 45:8, pages 1285-1298.
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Vivienne Travlos, Shane Patman, Jenny Downs, Dana Hince & Andrew C. Wilson. (2021) Parent Carer Quality of Life and Night-Time Attendance in Non-Ambulant Youth with Neuromuscular Disorders. Developmental Neurorehabilitation 24:7, pages 456-465.
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Miku Yamaguchi, Etsuyo Sonoda & Machiko Suzuki. (2019) The experience of parents of adult sons with Duchenne muscular dystrophy regarding their prolonged roles as primary caregivers: a serial qualitative study. Disability and Rehabilitation 41:7, pages 746-752.
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V. Prakash, Anjali M. Patel, K. Hariohm & Robert J. Palisano. (2017) Higher Levels of Caregiver Strain Perceived by Indian Mothers of Children and Young Adults with Cerebral Palsy Who have Limited Self-Mobility. Physical & Occupational Therapy In Pediatrics 37:1, pages 64-73.
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Jean K Mah. (2016) Current and emerging treatment strategies for Duchenne muscular dystrophy. Neuropsychiatric Disease and Treatment 12, pages 1795-1807.
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Xihua Li, Junlan Lv, Wenhua Zhu, Siqi Hong, Zhiqiang Wang, Xingzhi Chang, Ying Xu Gao, Yangmei Zhou, Caiping Jia, Jia Fang & Terrell A. Patterson. (2024) A 1-year analysis from a natural history study in Chinese individuals with Duchenne muscular dystrophy. The Lancet Regional Health - Western Pacific 42, pages 100944.
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Sam Geuens, Joanna Willen, Corine Antonis, Goedele Stegen, Eva Gielis, Eline Cuveele, Nathalie Goemans, Jurgen Lemiere & Liesbeth De Waele. (2023) The impact of clinical trial participation on quality of life and psychosocial well-being in children with Duchenne muscular dystrophy and their parents. Neuromuscular Disorders 33:11, pages 877-881.
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Giulio Gadaleta, Guido Urbano, Chiara Brusa, Rossella D'Alessandro, Enrica Rolle, Ilaria Cavallina, Alessio Mattei, Fulvia Ribolla, Claudia Raineri, Stefano Pidello, Liliana Vercelli, Federica S. Ricci & Tiziana E. Mongini. (2023) Adults living with Duchenne muscular dystrophy: old and new challenges in a cohort of 19 patients in their third to fifth decade. European Journal of Neurology.
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Michela Meregaglia, Elena Nicod & Michael Drummond. (2022) The estimation of health state utility values in rare diseases: do the approaches in submissions for NICE technology appraisals reflect the existing literature? A scoping review. The European Journal of Health Economics 24:7, pages 1151-1216.
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Nina Patel, Ileana M. Howard & Ahmet Baydur. (2023) Respiratory considerations in patients with neuromuscular disorders. Muscle & Nerve 68:2, pages 122-141.
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Masatoshi Ishizaki, Michio Kobayashi, Hiroya Hashimoto, Akinori Nakamura, Yasushi Maeda, Hidetsugu Ueyama & Tsuyoshi Matsumura. (2023) Caregiver Burden with Duchenne and Becker Muscular Dystrophy in Japan: A Clinical Observation Study. Internal Medicine.
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Shelagh M. Szabo, Ivana F. Audhya, Basia Rogula, David Feeny & Katherine L. Gooch. (2022) Factors associated with the health-related quality of life among people with Duchenne muscular dystrophy: a study using the Health Utilities Index (HUI). Health and Quality of Life Outcomes 20:1.
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Jill Carlton & Philip A. Powell. (2022) Measuring carer quality of life in Duchenne muscular dystrophy: a systematic review of the reliability and validity of self-report instruments using COSMIN. Health and Quality of Life Outcomes 20:1.
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Mary K. Colvin, Natalie Truba, Seth Sorensen, Erik Henricson & Kathi Kinnett. (2022) Dystrophinopathy and the brain: A parent project muscular dystrophy (PPMD) meeting report November 11-12, 2021, New York City, NY. Neuromuscular Disorders 32:11-12, pages 935-944.
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Daniel H. Grossoehme, Rachel Thienprayoon, Hemant Sawnani, Rachel Jenkins, Ian Rossman, Kathryn Mosher & Sarah Friebert. (2022) Assessment of the relationship between disease progression and goals of care by individuals with Duchenne muscular dystrophy and their caregivers. Muscle & Nerve 65:6, pages 646-651.
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Valeska Andreozzi, Pedro Labisa, Melina Mota, Susana Monteiro, Rita Alves, João Almeida, Björn Vandewalle, Jorge Felix, Katharina Buesch, Hugo Canhão & Igor Beitia Ortiz de Zarate. (2022) Quality of life and informal care burden associated with duchenne muscular dystrophy in Portugal: the COIDUCH study. Health and Quality of Life Outcomes 20:1.
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Amy G. Hartman, Sarah McKendry & Roxanna Bendixen. (2022) Comparing contributors of parental sleep health in families with and without a child with Duchenne muscular dystrophy. Sleep Health 8:1, pages 107-113.
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Pien M.M. Weerkamp, Philippe Collin, Rosa J. Maas, R. Jeroen Vermeulen, Sylvia Klinkenberg & Jos G.M. Hendriksen. (2022) Psychosocial adjustment in adults with Duchenne muscular dystrophy: A pilot study on a shortened parent-report questionnaire. Neuromuscular Disorders 32:2, pages 159-165.
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Elena Cejalvo, Manuel Martí-Vilar, César Merino-Soto & Marivel Teresa Aguirre-Morales. (2021) Caregiving Role and Psychosocial and Individual Factors: A Systematic Review. Healthcare 9:12, pages 1690.
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Kate Williams, Ian Davidson, Mark Rance, Katharina Buesch & Sarah Acaster. (2021) A qualitative study on the impact of caring for an ambulatory individual with nonsense mutation Duchenne muscular dystrophy. Journal of Patient-Reported Outcomes 5:1.
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Rieza H. Soelaeman, Michael G. Smith, Kashika Sahay, J. Mick Tilford, Dana Goodenough, Pangaja Paramsothy, Lijing Ouyang, Joyce Oleszek & Scott D. Grosse. (2021) Labor market participation and productivity costs for female caregivers of minor male children with Duchenne and Becker muscular dystrophies. Muscle & Nerve 64:6, pages 717-725.
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İrem ARSLANTATAR & Reyhan ATASÜ TOPÇUOĞLU. (2021) DUCHENNE MUSKÜLER DİSTROFİLİ HASTALARINA BAKIM VEREN AİLE ÜYELERİNİN BAKIM YÜKÜ VE AİLE YILMAZLIK DÜZEYLERİ ARASINDAKİ İLİŞKİTHE RELATIONSHIP BETWEEN CAREGIVING BURDEN AND FAMILY RESILIENCE LEVELS OF FAMILY MEMBERS WHO CARE FOR DUCHENNE MUSCULAR DYSTROPHY PATIENTS. Tıbbi Sosyal Hizmet Dergisi 0:17, pages 14-37.
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Merve Deniz PAK GÜRE & Cemre PAK. (2021) NADİR HASTALIĞI OLAN ÇOCUKLARIN AİLELERİNDE BAKIM YÜKÜNÜN İNCELENMESİEXAMINING THE CAREGIVER BURDEN IN THE FAMILIES OF CHILDREN WITH RARE DISEASES. Turkish Journal of Family Medicine and Primary Care 15:2, pages 269-277.
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Veronika Waldboth, Christine Patch, Romy Mahrer‐Imhof & Alison Metcalfe. (2021) The family transition experience when living with childhood neuromuscular disease: A grounded theory study. Journal of Advanced Nursing 77:4, pages 1921-1933.
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Debra Porteous, Barbara Davies, Christine English & Joanne Atkinson. (2021) An Integrative Review Exploring Psycho-Social Impacts and Therapeutic Interventions for Parent Caregivers of Young People Living with Duchenne’s Muscular Dystrophy. Children 8:3, pages 212.
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Jamie L. Jackson, Christina X. Korth, Carine E. Leslie, Jennifer Cotto, May Ling Mah, Kan Hor, Linda Cripe, Samiah Al-Zaidy, Eric M. Camino, Kathleen Church, Kelly J. Lehman, Victoria Shay & Jerry R. Mendell. (2020) Health-Related Quality of Life and Emotional Distress Among Mothers of Sons With Muscular Dystrophy as Compared to Sex- and Age Group–Matched Controls. Journal of Child Neurology 36:3, pages 177-185.
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Petra Baji, Werner B. F. Brouwer, Job van Exel, Dominik Golicki, Valentina Prevolnik Rupel, Zsombor Zrubka, László Gulácsi, Valentin Brodszky, Fanni Rencz & Márta Péntek. (2020) Validation of the Hungarian version of the CarerQol instrument in informal caregivers: results from a cross-sectional survey among the general population in Hungary. Quality of Life Research 30:2, pages 629-641.
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Daphne C. Voormolen, Job van Exel, Werner Brouwer, Anders Sköldunger, Manuel Gonçalves-Pereira, Kate Irving, Anja Bieber, Geir Selbaek, Bob Woods, Orazio Zanetti, Frans Verhey, Anders Wimo & Ron L. H. Handels. (2020) A validation study of the CarerQol instrument in informal caregivers of people with dementia from eight European countries. Quality of Life Research 30:2, pages 577-588.
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Shelagh M. Szabo, Ivana F. Audhya, Daniel C. Malone, David Feeny & Katherine L. Gooch. (2019) Characterizing health state utilities associated with Duchenne muscular dystrophy: a systematic review. Quality of Life Research 29:3, pages 593-605.
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Ryan S. Paquin, Ryan Fischer, Carol Mansfield, Brennan Mange, Katherine Beaverson, Annie Ganot, Amy Strong Martin, Carl Morris, Colin Rensch, Valeria Ricotti, Leo J. Russo, Alesia Sadosky, Edward C. Smith & Holly L. Peay. (2019) Priorities when deciding on participation in early-phase gene therapy trials for Duchenne muscular dystrophy: a best–worst scaling experiment in caregivers and adult patients. Orphanet Journal of Rare Diseases 14:1.
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