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Communication difficulties reported by patients diagnosed with idiopathic pulmonary fibrosis and their carers: a European focus group study

Sarah Masefield, Nicola Cassidy, Derek Ross, Pippa Powell, Athol Wells
ERJ Open Research 2019 5: 00055-2019; DOI: 10.1183/23120541.00055-2019
Sarah Masefield
1European Lung Foundation, Sheffield, UK
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Nicola Cassidy
2Irish Lung Fibrosis Association, Dublin, Ireland
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Derek Ross
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Pippa Powell
1European Lung Foundation, Sheffield, UK
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  • For correspondence: pippa.powell@europeanlung.org
Athol Wells
3Royal Brompton and Harefield Hospital, London, UK
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Tables

  • TABLE 1

    Topics identified for patient and carer consultation

    By the working groupBy the focus groups
    Definitions of mild, moderate and severe IPF
    Communication of diagnosis
    Misdiagnosis and incorrect treatment
    Medication issues
    Patient-centred outcomes
    Ongoing care and advanced care
    New research on diagnosis and treatment
    Lung transplantation
    Financial impact of IPF
    Reliable information and doctor–patient communication
    Maximising quality of life
    Patient and family support
    Exercise and pulmonary rehabilitation

    IPF: idiopathic pulmonary fibrosis.

    • TABLE 2

      Main themes and priority areas highlighted by the idiopathic pulmonary fibrosis focus group participants

      Professional−patientProfessional−professionalPatient−patient
      Effective and empathic communication
      Point of contact
      Medication guidance
      Advanced care planning
      Specialist physician to other healthcare professionals
      Referral to rehabilitation and support services
      Support groups and patient organisations
      Carer and family support
    • TABLE 3

      A summary of actions proposed by the idiopathic pulmonary fibrosis (IPF) focus groups that could improve communications and, hence, IPF care

      Physician−patient communication
       Specialist physicians should:
      •   Always use plain language, and be honest and empathetic

      •   Allow adequate time for questions at the end of the appointment

      •   Ensure there is a follow-up appointment (or telephone/e-mail contact) 1–4 weeks after diagnosis,   when the patient has had time to digest their diagnosis and to formulate questions

      •   Tailor information to the individual; the needs of each IPF patient will be different and will change   over time

      •   Explain all treatment options to a patient, even those that are not an option for them and explain why

      •   Encourage patients to keep a health diary and to report any changes in their health at each   appointment

      •   Arrange a point of contact for the IPF patient, who can be contacted outside of scheduled   appointments

      •   Recommend that the specialist centre provide a list of reliable information sources that the IPF   patient can go to for information

      •   Provide clear guidance on medicines

      •   Acknowledge and address any concerns with treatments that an IPF patient may be prescribed for   comorbidities

      •   Raise the issue of end-of-life planning with their IPF patient when it is a medical imperative or the   patient requests information

      •   Provide prompt access to a team trained in dealing with end-of-life issues

      •   Explain the importance of remaining physically active to maintain health and for lung transplantation   to the patient

      Physician−physician communication
       IPF physicians should:
      •   Consider providing IPF patients with printed information (factsheet) that clearly outlines what IPF is   and what treatment a patient is on, so that other HCPs can understand what the condition is

      •   Ensure that the IPF patient's local doctor is kept up to date with all changes in the patient's care

      •   Provide referrals for support services when they are needed (e.g. psychological support, smoking   cessation and nutritional advice)

      Patient−patient communication
      •  ILD specialist physicians and centres should routinely signpost patients and carers to local support groups to facilitate peer support

      HCP: healthcare professional; ILD: interstitial lung disease.

      • TABLE 4

        An overview of the common points covered in the idiopathic pulmonary fibrosis (IPF) charters

        ThemeEuropeIrelandUKCanada
        DiagnosisEarly and accurate diagnosisEarly and accurate diagnosis with multidisciplinary team inputTimely and accurate diagnosis and care involving an appropriately skilled, specialist multidisciplinary teamTimely and accurate diagnosis and care, involving a skilled specialist and a multidisciplinary care team
        CareEqual access to careAccess to appropriate medicines and oxygen therapyAccess to seamless, well-integrated health and social care services, including ambulatory and domiciliary oxygen services personalised to the needs of IPF patientsEqual levels of care across Canada based on the best standard of care currently available
        InformationComprehensive and high-quality information about the conditionClear and concise information about IPF in plain languageHigh-quality information about the condition, including full details of all treatment, clinical trials, transplant, support and service provision options available to themHigh-quality and accurate information about IPF, including full details of all treatments, clinical trials, support, service provisions and transplant options available to them
        HolisticA holistic approach to standardise IPF managementSeamless, well-integrated health and social care services, including timely access to ambulatory and personalised home oxygen services and appropriate IPF medications
        SupportAccess to social, practical and emotional supportAccess to dedicated peer support networks, both for patients and their carers, in person or digitallyDedicated in-person or remote peer support networks for patients and their caregivers
        Palliative careBetter access to palliative care and end-of-life careSpecialist palliative care and end-of-life care; supported by the Gold Standards Framework where appropriateImproved, more accessible, compassionate palliative and end-of-life care when appropriate
        Pulmonary rehabilitation and transplantEarly referral to the National Lung Transplant Unit for lung transplant assessment, with a minimal emphasis on age
        Early referral to pulmonary rehabilitation and exercise programmes
        Swift access to specialist care and IPF-tailored pulmonary rehabilitation programmes, appropriate prioritisation on transplant waiting lists, and prompt social care assessments and response for patients with exacerbations and rapid disease progression

        Bold text highlights where the point specifically relates to communication.

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        Communication difficulties reported by patients diagnosed with idiopathic pulmonary fibrosis and their carers: a European focus group study
        Sarah Masefield, Nicola Cassidy, Derek Ross, Pippa Powell, Athol Wells
        ERJ Open Research Apr 2019, 5 (2) 00055-2019; DOI: 10.1183/23120541.00055-2019

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        Communication difficulties reported by patients diagnosed with idiopathic pulmonary fibrosis and their carers: a European focus group study
        Sarah Masefield, Nicola Cassidy, Derek Ross, Pippa Powell, Athol Wells
        ERJ Open Research Apr 2019, 5 (2) 00055-2019; DOI: 10.1183/23120541.00055-2019
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