Table 3 The specific issues raised by the UK & US patients with muscle disease showing how these have been grouped into sub-domains and domains used by INQoL
Domain | Sub domain | Specific Issues raised by patients |
|---|---|---|
Activities | Daily activities | Getting out and about (transport & driving) |
| Â | Â | Self care |
| Â | Â | Housework |
| Â | Â | Falling |
| Â | Leisure | Sport |
| Â | Â | Eating out |
| Â | Â | Sedentary hobbies |
| Â | Â | Visiting friends & family |
| Â | Â | Gardening |
| Â | Â | Shopping |
| Â | Â | Holidays/vacation |
| Â | Employment | Work activities |
| Â | Â | Stopping work |
| Â | Â | Limitations to career/job prospects |
| Â | Â | Discrimination |
| Â | Â | Change in job/occupation |
| Â | Â | Financial considerations |
Social impact | Partner | Meeting potential partner |
| Â | Â | Strain on relationships |
| Â | Â | Sex life |
| Â | Â | Support from partner (positive) Limits on doing activities with partner |
| Â | Family | Lack of support |
| Â | Â | Worry about being a burden |
| Â | Â | Worry about passing on gene |
| Â | Â | Support from family (positive) Lack of understanding Limits on participation |
| Â | Friends | Difficulty in visiting friends |
| Â | Â | Loss of contact |
| Â | Â | Support from friends (positive) |
| Â | General social interaction | Avoidance of situation |
| Â | Â | Lack of understanding |
| Â | Â | Difficulty explaining condition |
| Â | Â | Other people's perceptions |
| Â | Â | Problems of access |
| Â | Â | Discrimination |
| Â | Â | Encouragement from others (positive) Hidden disease Other people's emotions Difficult to plan (unpredictable) |
Psychological Impact | Emotions | Feelings of loss |
| Â | Â | Feelings of abandonment |
| Â | Â | Guilt |
|  |  |    - at not being able to fulfil social role |
|  |  |    - at passing on gene to children |
| Â | Â | Depression |
| Â | Â | Frustration |
| Â | Â | Sadness |
| Â | Â | Anxiety |
| Â | Â | Fear |
| Â | Â | Shame/embarrassment/self-conscious |
| Â | Â | Loneliness |
| Â | Perception of the future | Fear of losing independence |
| Â | Â | Fear of passing on gene to children (congenital patients) |
| Â | Â | Awareness that future is uncertain |
| Â | Identity/Self-image | Body image |
| Â | Â | Social image/identity/role |
| Â | Independence | Loss of control |
| Â | Coping strategies | Determination |
| Â | Â | Acceptance |
|  |  |    - of condition |
|  |  |    - that no treatment available |
| Â | Â | Focusing on the present |
| Â | Â | Making the best |
| Â | Â | Taking control |
| Â | Â | Changing expectations |
| Â | Â | Planning |
| Â | Â | Religious faith |
| Â | Â | Social comparison |
| Â | Â | Avoidance of situations/people/places |
| Â | Â | Covering effects of condition |
| Â | Â | Attempts to carry on as before |
| Â | Â | Avoidance of specific entities that are believed to worsen condition (stress, people with infections, pollen, extreme temperatures) |
| Â | Â | Hope for the future |
| Â | Â | Pacing self/resting to adapt to tiredness/adjust to accommodate |