Table 1.
Domains investigated through questions on quality of life and worries and concerns about the future
| Domain | Impact of OI on quality of life a | Worries and concerns b |
|---|---|---|
| Physical well-being and functioning | Ability to self-care | Getting older |
| Ability to live independently | Ability to care for oneself | |
| Sexual health | Living independently | |
| Losing independence | ||
| Losing mobility | ||
| Ability to have a family | ||
| OI complications | ||
| Future fractures | ||
| Pregnancy | ||
| Menopause | ||
| Careers and finances | Work hours | Losing a job |
| Job type | Future financial situation | |
| Career choices | Financial means to pay for treatment and care | |
| Social life and relationships | Type of leisure activities | Relationship with family and friends |
| Social life | Romantic relationship | |
| Relationships with family and friends | Future of care recipients with OI | |
| Romantic relationships | ||
| Mental well-being | Mental health | |
| Happiness | ||
| Healthcare | Access to doctors | |
| Access to medicines | ||
| Access to care | ||
| Side effects of treatment |
Abbreviations: OI, osteogenesis imperfecta
aQuestions 102 & 106 “In the past 12 months, how would you describe the impact that OI has had on your life?”, where respondents received the following instructions: “This question is about understanding the ‘negative’ impacts or challenges you have faced”; bQuestions 103, 104, 105, 107, 108, & 109 “Do you feel worried or concerned about any of the following things?”