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How does a new breathlessness support service affect patients?

Marjolein Gysels, Charles C. Reilly, Caroline J. Jolley, Caty Pannell, Femke Spoorendonk, Helene Bellas, Preety Madan, John Moxham, Irene J. Higginson, Claudia Bausewein
European Respiratory Journal 2015 46: 1515-1518; DOI: 10.1183/13993003.00751-2015
Marjolein Gysels
1King's College London, Cicely Saunders Institute, Dept of Palliative Care, Policy and Rehabilitation, London, UK
2Centre for Social Science and Global Health, University of Amsterdam, Amsterdam, The Netherlands
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  • For correspondence: mhgysels@gmail.com
Charles C. Reilly
1King's College London, Cicely Saunders Institute, Dept of Palliative Care, Policy and Rehabilitation, London, UK
3Physiotherapy, King's College Hospital NHS Foundation Trust, London, UK
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Caroline J. Jolley
4King's College London, Dept of Asthma, Allergy and Respiratory Science, London, UK
5Respiratory Medicine, King's College Hospital NHS Foundation Trust, London, UK
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Caty Pannell
1King's College London, Cicely Saunders Institute, Dept of Palliative Care, Policy and Rehabilitation, London, UK
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Femke Spoorendonk
1King's College London, Cicely Saunders Institute, Dept of Palliative Care, Policy and Rehabilitation, London, UK
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Helene Bellas
3Physiotherapy, King's College Hospital NHS Foundation Trust, London, UK
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Preety Madan
6Occupational Therapy, King's College Hospital NHS Foundation Trust, London, UK
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John Moxham
4King's College London, Dept of Asthma, Allergy and Respiratory Science, London, UK
5Respiratory Medicine, King's College Hospital NHS Foundation Trust, London, UK
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Irene J. Higginson
1King's College London, Cicely Saunders Institute, Dept of Palliative Care, Policy and Rehabilitation, London, UK
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Claudia Bausewein
1King's College London, Cicely Saunders Institute, Dept of Palliative Care, Policy and Rehabilitation, London, UK
7Dept of Palliative Medicine, University Hospital Munich, Munich, Germany
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Tables

  • Additional Files
  • TABLE 1

    Qualitative study topic guide

    QuestionsPrompts
    1. Using the service
     1.1. What did you expect from the Breathlessness Support Service?Gain/benefit? In what way did you think they would help you? Cure/palliate?
     1.2. What did you think they would do?How would they help? Methods/means
     1.3. Did they do what you expected?
    2. Location of care
     2.1. How did you feel about coming to the hospital for the service?Waiting times; length of appointment; physical environment; location within the hospital (oncology); presence of partner
     2.2. What was your journey to King's like?Time; cost; reliance on others/hospital transport; parking/walking
     2.3. How did you feel about being visited at home by the service?Are the visits too long/too short? Presence of spouse/carer
     2.4. You were visited at home and also you came to the breathlessness clinic at the hospital. Were you happy with this arrangement or do you think the service should be delivered all at home or at the hospital?
    3. Staff
     3.1. Whom did you meet at clinic?Doctor/physiotherapist: do they know who they are?
     3.2. Whom did you meet at home?
     3.3. How do you feel about the staff?Doctor; physiotherapist; contradictory advice
    4. Type of help
     4.1. What sort of help has the service given you?Advice/information; psychological help; exercises; referral
     4.2. Does the service provide the sort of information and care that you thought it would?Is it what you expected when you were referred?
    5. Frequency
     5.1. What do you think about the length of time between appointments?Frequency; too long/ too short; source of help between appointments
     5.2. How long do you think you would like to stay in contact with the service?Short-term advice or long-term support
    6. Information giving
     6.1. Was any of the advice or information they have given new to you?
     6.2. Have they given you too much new information?
    7. Outcome of service
     7.1. Has it improved your breathlessness?
     7.2. Has it improved any other symptom(s) or problem(s)?
     7.3. Has it improved your everyday life/quality of life?What have you gained?
     7.4. What did you find helpful about the service?What do you like about it? Style/content
     7.5. What did you find unhelpful about the service?What don't you like about it? Style/content
     7.6. What was the most useful thing the Breathlessness Support Service did or suggested in terms of managing your breathlessness?
    8. Improving the service
     8.1. How could the service be better?What would a good breathlessness service be like? Timing, i.e. should referral have been earlier?
     8.2. Would you recommend the breathlessness service (in its current form) to someone in a similar situation to yourself?
     8.3. Is there anything else you'd like to tell/ask me?

Additional Files

  • Tables
  • Disclosures

    • C. Bausewein
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How does a new breathlessness support service affect patients?
Marjolein Gysels, Charles C. Reilly, Caroline J. Jolley, Caty Pannell, Femke Spoorendonk, Helene Bellas, Preety Madan, John Moxham, Irene J. Higginson, Claudia Bausewein
European Respiratory Journal Nov 2015, 46 (5) 1515-1518; DOI: 10.1183/13993003.00751-2015

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How does a new breathlessness support service affect patients?
Marjolein Gysels, Charles C. Reilly, Caroline J. Jolley, Caty Pannell, Femke Spoorendonk, Helene Bellas, Preety Madan, John Moxham, Irene J. Higginson, Claudia Bausewein
European Respiratory Journal Nov 2015, 46 (5) 1515-1518; DOI: 10.1183/13993003.00751-2015
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