Skip to main content

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

From: Validation of the individualised neuromuscular quality of life for the USA with comparison of the impact of muscle disease on those living in USA versus UK

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