Wellbeing measurement among adults with Charcot-Marie-Tooth disease
Background and aims: Wellbeing research among individuals with Charcot-Marie-Tooth disease (CMT) is limited. The goal of the current study is to characterize the challenges experienced by adults with CMT that researchers may miss by utilizing typical strategies to capture mental health and wellbeing...
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| Format: | Article |
| Language: | English |
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Elsevier
2024-01-01
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| Series: | Health Care Transitions |
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| Online Access: | http://www.sciencedirect.com/science/article/pii/S2949923224000138 |
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| author | Payton D. Rule Megan W. Wolk Patrick L. Hill |
| author_facet | Payton D. Rule Megan W. Wolk Patrick L. Hill |
| author_sort | Payton D. Rule |
| collection | DOAJ |
| description | Background and aims: Wellbeing research among individuals with Charcot-Marie-Tooth disease (CMT) is limited. The goal of the current study is to characterize the challenges experienced by adults with CMT that researchers may miss by utilizing typical strategies to capture mental health and wellbeing. Methods: In 2021, we recruited 288 US adults with CMT (MAge = 60 years, 59% Female, 93% White) to take part in an online survey. Participants were presented with validated wellbeing and health measures, in addition to newly created measures specific to CMT, and then asked to provide free-response feedback about aspects of their lived experiences missing from these measures. Thematic analysis were applied to the free-response data to identify CMT-related difficulties that may impact wellbeing among adults with CMT. Results: Results identified nine CMT-related challenges that are important to individuals with CMT and are often left out of wellbeing assessments in this population. The three most common themes identified were anxiety or worry, coping with loss of function or progression, and difficulty finding knowledgeable medical providers. Further, some aspects of the CMT experience may be comorbid. Interpretation: These results can be used to inform future research and clinical practice in the CMT population. |
| format | Article |
| id | doaj-art-78a40565babc4bfcb419399a2efe52e5 |
| institution | Kabale University |
| issn | 2949-9232 |
| language | English |
| publishDate | 2024-01-01 |
| publisher | Elsevier |
| record_format | Article |
| series | Health Care Transitions |
| spelling | doaj-art-78a40565babc4bfcb419399a2efe52e52024-11-30T07:14:54ZengElsevierHealth Care Transitions2949-92322024-01-012100053Wellbeing measurement among adults with Charcot-Marie-Tooth diseasePayton D. Rule0Megan W. Wolk1Patrick L. Hill2Corresponding author.; Department of Psychological and Brain Sciences, Washington University in St. Louis, 1 Brookings Dr., St. Louis, MO 63130, United StatesDepartment of Psychological and Brain Sciences, Washington University in St. Louis, 1 Brookings Dr., St. Louis, MO 63130, United StatesDepartment of Psychological and Brain Sciences, Washington University in St. Louis, 1 Brookings Dr., St. Louis, MO 63130, United StatesBackground and aims: Wellbeing research among individuals with Charcot-Marie-Tooth disease (CMT) is limited. The goal of the current study is to characterize the challenges experienced by adults with CMT that researchers may miss by utilizing typical strategies to capture mental health and wellbeing. Methods: In 2021, we recruited 288 US adults with CMT (MAge = 60 years, 59% Female, 93% White) to take part in an online survey. Participants were presented with validated wellbeing and health measures, in addition to newly created measures specific to CMT, and then asked to provide free-response feedback about aspects of their lived experiences missing from these measures. Thematic analysis were applied to the free-response data to identify CMT-related difficulties that may impact wellbeing among adults with CMT. Results: Results identified nine CMT-related challenges that are important to individuals with CMT and are often left out of wellbeing assessments in this population. The three most common themes identified were anxiety or worry, coping with loss of function or progression, and difficulty finding knowledgeable medical providers. Further, some aspects of the CMT experience may be comorbid. Interpretation: These results can be used to inform future research and clinical practice in the CMT population.http://www.sciencedirect.com/science/article/pii/S2949923224000138DisabilitiesWellbeingLived experienceInherited peripheral neuropathy |
| spellingShingle | Payton D. Rule Megan W. Wolk Patrick L. Hill Wellbeing measurement among adults with Charcot-Marie-Tooth disease Health Care Transitions Disabilities Wellbeing Lived experience Inherited peripheral neuropathy |
| title | Wellbeing measurement among adults with Charcot-Marie-Tooth disease |
| title_full | Wellbeing measurement among adults with Charcot-Marie-Tooth disease |
| title_fullStr | Wellbeing measurement among adults with Charcot-Marie-Tooth disease |
| title_full_unstemmed | Wellbeing measurement among adults with Charcot-Marie-Tooth disease |
| title_short | Wellbeing measurement among adults with Charcot-Marie-Tooth disease |
| title_sort | wellbeing measurement among adults with charcot marie tooth disease |
| topic | Disabilities Wellbeing Lived experience Inherited peripheral neuropathy |
| url | http://www.sciencedirect.com/science/article/pii/S2949923224000138 |
| work_keys_str_mv | AT paytondrule wellbeingmeasurementamongadultswithcharcotmarietoothdisease AT meganwwolk wellbeingmeasurementamongadultswithcharcotmarietoothdisease AT patricklhill wellbeingmeasurementamongadultswithcharcotmarietoothdisease |