Background A programme was developed at Hospice Isle of Man to provide support for people who are experiencing extreme tiredness and/or breathlessness. The programme involves exercise, relaxation and education.
Aim To evaluate the programme using validated outcome measures and the views and experience of the participants.
Methods We used the Self-reported Chronic Respiratory Disease Questionnaire (Chauvin, Rupley, Meyers et al., 2008) which is a quality of life measure designed for those with respiratory problems. It asks individuals to rate their current state on four dimensions: dyspnoea, fatigue, emotional function and mastery (feeling of control over disease) using a seven point scale. This is done for their five most important activities in which they have been limited by symptoms, giving a total score for each dimension. Previous validations (Chauvin, Rupley, Meyers et al., 2008) have identified that the minimum clinically important difference in the score for each activity is about 0.5 while 1.5 and 2.0 would identify moderate and large positive changes and negative values would indicate decline. Individuals rated themselves at the beginning of the programme and again at the end.
Results to date We have only completed 10 cases so far. Of these, one person had a large improvement in dyspnoea, one a moderate improvement and two a small improvement; one person deteriorated. For fatigue, three reported a large improvement, one moderate and three a small improvement; no-one deteriorated. For emotional function, there was one large improvement, two moderate and one small and one person deteriorated. For mastery, one person had a large improvement, one a moderate improvement and one a small improvement but five deteriorated.
Conclusion This is only a small sample so far but the evaluation continues. The improvement in dyspnoea and fatigue is encouraging and we hope that over time there will be more improvement in mastery.
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