Figure 1:
Major effects of DM1 http://myotonicdystrophy.com/http:/mytonicdystrophy.com/general-information/retrieved 06.11.2021
Table 1
| Group 1 People living with DM1 diagnosed by a medical specialist by positive genetic testing and/or recognised family inheritance. | |
| Inclusion criteria | Exclusion criteria |
| Aged 18 years or over. Be able to speak, read and write in English. Able to give consent to participate on their own behalf. Have attended a health care appointment in the previous 12 months. Be willing and able to take part in a recorded interview for approximately 1 hour. | Under the age of 18 years. Have a known cognitive impairment that impacts on their ability to provide informed consent on their own behalf. |
Table 2
| Group 2 Support people: family, carers, friends of a person living with DM1 | |
| Inclusion Criteria | Exclusion criteria |
| Aged 18 years or over. Be able to speak, read and write in English. Able to give consent to participate on their own behalf. Have attended a health care appointment supporting a person with DM1 in the previous 12 months. | Under the age of 18 years. Has not assisted a person with DM1 in health care participation. |
Table 3
| Group 3 Health care professionals | |
| Inclusion Criteria | Exclusion criteria |
| Have provided care to people living with DM1 in the past 12 months. Provided care directly related to the DM1 condition – e.g., symptom management, symptom monitoring (cardiac or respiratory tests, physical therapy). Have greater than 12 months experience in health care delivery for people living with DM1. | Less than 12 months experience of DM1 care provision. |