Tables
- TABLE 1
Topics identified for patient and carer consultation
By the working group By 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 treatmentLung transplantation
Financial impact of IPF
Reliable information and doctor–patient communication
Maximising quality of life
Patient and family support
Exercise and pulmonary rehabilitationIPF: idiopathic pulmonary fibrosis.
- TABLE 2
Main themes and priority areas highlighted by the idiopathic pulmonary fibrosis focus group participants
Professional−patient Professional−professional Patient−patient Effective and empathic communication
Point of contact
Medication guidance
Advanced care planningSpecialist physician to other healthcare professionals
Referral to rehabilitation and support servicesSupport 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
Theme Europe Ireland UK Canada Diagnosis Early and accurate diagnosis Early and accurate diagnosis with multidisciplinary team input Timely and accurate diagnosis and care involving an appropriately skilled, specialist multidisciplinary team Timely and accurate diagnosis and care, involving a skilled specialist and a multidisciplinary care team Care Equal access to care Access to appropriate medicines and oxygen therapy Access to seamless, well-integrated health and social care services, including ambulatory and domiciliary oxygen services personalised to the needs of IPF patients Equal levels of care across Canada based on the best standard of care currently available Information Comprehensive and high-quality information about the condition Clear and concise information about IPF in plain language High-quality information about the condition, including full details of all treatment, clinical trials, transplant, support and service provision options available to them High-quality and accurate information about IPF, including full details of all treatments, clinical trials, support, service provisions and transplant options available to them Holistic A holistic approach to standardise IPF management Seamless, well-integrated health and social care services, including timely access to ambulatory and personalised home oxygen services and appropriate IPF medications Support Access to social, practical and emotional support Access to dedicated peer support networks, both for patients and their carers, in person or digitally Dedicated in-person or remote peer support networks for patients and their caregivers Palliative care Better access to palliative care and end-of-life care Specialist palliative care and end-of-life care; supported by the Gold Standards Framework where appropriate Improved, more accessible, compassionate palliative and end-of-life care when appropriate Pulmonary rehabilitation and transplant Early referral to the National Lung Transplant Unit for lung transplant assessment, with a minimal emphasis on age
Early referral to pulmonary rehabilitation and exercise programmesSwift 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.
