Skip to main content

Supporting ILD patients and caregivers

Nurses have an important role in supporting patients and caregivers from initial ILD diagnosis, continued management and to the final stages of care1–5

Supporting ILD patients and caregivers

NURSES HAVE A KEY ROLE IN SUPPORTING PATIENTS AND CAREGIVERS THROUGHOUT THE COURSE OF ILD1–5

Nurses have a key role to play within a multidisciplinary care team in helping patients:5

  • Understand their disease and its treatment
  • Manage the adverse reactions of medication
  • Feel supported throughout the course of their disease

An approach to addressing the care needs of patients throughout their journey with fibrotic ILD6

An approach to addressing the care needs of patients throughout their journey with fibrotic ILD6

Reprinted from Lancet Respir Med, 5(12), Kreuter M, Bendstrup E, Russell A, et al, Palliative care in interstitial lung disease: living well, 968–980, 2017, with permission from Elsevier.

POTENTIAL ROLES OF NURSES THROUGHOUT THE PATIENTS’ AND CAREGIVERS’ JOURNEY WITH FIBROTIC ILD2

Clinical evaluation Diagnosis and monitoring Pharmacological and non-pharmacological management of ILD
  • Collect data from the patient and clinical record2
  • Acquire missing data from other sources2
  • Coordinate investigations and referrals2
  • Coordinate the ILD multidisciplinary conference2
  • Provide counselling on treatments, impact of disease, overall prognosis2
  • Ensure patients and caregivers understand that current treatments can help to slow disease progression, but they are not a cure7,8
  • Troubleshoot medication side effects2
  • Coordinate access to medication, home oxygen, etc.2

Patient and caregiver education
  • Educate patients and caregivers about ILD, including difficult subjects like disease progression and prognosis2,3
  • Educate and remind patients about the importance of attending medical appointments for regular monitoring5,9–12
  • Provide reliable resources for additional education2
  • Help provide answers to any questions the patients and caregivers may have about ILDs1

Patient and caregiver support
  • Explore and support virtual platforms for patient networking and education2
  • Coordinate monthly support group meetings and other patient forums2

Ongoing patient/healthcare professional communication
  • Triage phone calls and emails from patients and healthcare professionals2

SOME KEY POINTS TO COMMUNICATE TO PATIENTS AND CAREGIVERS AT THE VARIOUS STAGES OF THEIR JOURNEY WITH FIBROTIC ILDs5

Investigations

Investigations

If you might have ILD, you will undergo investigations including:

  • A thorough medical history
  • Lung function tests such as pulmonary function tests
  • An HRCT scan to look at changes within your lungs
  • Blood tests to look for antibodies that may suggest autoimmune disease
  • Referral to specialists who are experts in diagnosing ILDs
Monitoring

Monitoring

  • The course of fibrotic ILDs varies between patients
  • Regular monitoring is needed to find out if your disease is getting worse
  • Follow-up tests will include assessment of your symptoms and lung function and any side effects of treatments you are taking
  • This will enable your care team to decide if your treatment needs changing
Treatment

Treatment

  • Your care team will discuss treatment options with you
  • You might be given drugs that slow the worsening of your disease or help to relieve your symptoms
  • Your care team will help you to anticipate and manage drug side effects that you might experience
  • You might be given supplemental oxygen if you have low levels of oxygen in your blood
  • Pulmonary rehabilitation programs can also be helpful to reduce your symptoms
support

Support

  • Ask your care team any questions that you have about your disease and its treatment
  • Check information that you read online with your care team
  • Consider joining a patient support group (face-to-face or online)
  • Help your family and friends understand your disease so that they can support you

CARING FOR A LOVED ONE WITH FIBROTIC ILD COULD BE OVERWHELMING FOR CAREGIVERS13,14

Caregivers have an important role in providing both physical and emotional support for loved ones living with chronic conditions, including fibrotic ILD.15

  • Stay healthy
  • Don’t hover, allow your loved one to maintain a sense of independence
  • Tell your loved one that you are there for them
  • Ask for help from friends and family
  • Be your loved one’s eyes and ears during medical appointments
  • Encourage your loved one to seek supportive care
  • Think about the future

 

The caregivers’ responsibilities can increase and change as their loved ones’ needs increase, which can result in additional strain.15

Family members and friends of those with fibrotic ILDs should seek tailored support to meet their physical, emotional and spiritual needs.14,16,17

Nurses can provide some self-care tips for caregivers, as well as help them connect with their local carer support groups.2 These support groups can provide advice and help for the mental and practical challenges in providing care to a loved one.18

Some self-care tips from other fibrotic ILD caregivers that may be useful19

Some self-care tips from other fibrotic ILD caregivers that may be useful19

You have a valuable role in supporting patients and caregivers throughout their journey with fibrotic ILDs1–5

What other resources can help you support your patients in their journey with fibrotic ILD?

Footnotes

  • HRCT, high-resolution computed tomography; ILD, interstitial lung disease.

  1. Denton CP, Laird B, Moros L, Flores JLL. Things left unsaid: important topics that are not discussed between patients with systemic sclerosis, their carers and their healthcare professionals–a discourse analysis. Clin Rheumatol. 2021;40:1399–1407.
  2. Grewal JS, Ryerson CJ. A closer look at the multidisciplinary interstitial lung disease clinic: Who, what and how. Respirology. 2021;26:12–13.
  3. Russell AM, Olive S, Lines S, et al. Contemporary challenges for specialist nursing in interstitial lung disease. Breathe. 2018;14:36–41.
  4. Shaw J, Marshall T, Morris H, et al. Idiopathic pulmonary fibrosis: a holistic approach to disease management in the antifibrotic age. J Thorac Dis. 2017;9:4700–4707.
  5. Barbera T, Davila L, Patel NM. Management and support of patients with fibrosing interstitial lung diseases. Nurse Pract. 2021;46(7):39–44.
  6. Kreuter M, Bendstrup E, Russell A, et al. Palliative care in interstitial lung disease: living well. Lancet Respir Med. 2017;5(12):968–980.
  7. Borie R, Le Guen P, Ghanem M, et al. The genetics of interstitial lung diseases. Eur Respir Rev. 2019;28(153):190053.
  8. Cottin V, Wollin L, Fischer A, et al. Fibrosing interstitial lung diseases: knowns and unknowns. Eur Respir Rev. 2019;28:180100.
  9. Cottin V, Hirani NA, Hotchkin DL, et al. Presentation, diagnosis and clinical course of the spectrum of progressive-fibrosing interstitial lung diseases. Eur Respir Rev. 2018;27:180076.
  10. Wuyts WA, Wijsenbeek M, Bondue B, et al. Idiopathic pulmonary fibrosis: Best practice in monitoring and managing a relentless fibrotic disease. Respiration. 2020;99:73–82.
  11. George PM, Spagnolo P, Kreuter M, et al. Progressive fibrosing interstitial lung disease: clinical uncertainties, consensus recommendations, and research priorities. Lancet Respir Med. 2020;8:925–934.
  12. Wong AW, Ryerson CJ, Guler SA. Progression of fibrosing interstitial lung disease. Respir Res. 2020;21(1):32.
  13. Bajwah S, Higginson IJ, Ross JR, et al. The palliative care needs for fibrotic interstitial lung disease: a qualitative study of patients, informal caregivers and health professionals. Palliat Med. 2013;27(9):869–876.
  14. Lee JY, Tikellis G, Corte TJ, et al. The supportive care needs of people living with pulmonary fibrosis and their caregivers: a systematic review. Eur Respir Rev. 2020;29(156):190125.
  15. Centers for Disease Control and Prevention. Caregiving for family and friends — a public health issue. Available at: https://www.cdc.gov/aging/caregiving/caregiver-brief.html. [Accessed January 2023].
  16. American Lung Association. How to support your loved one with pulmonary fibrosis. Available at: https://www.lung.org/lung-health-diseases/lung-disease-lookup/pulmonary-fibrosis/family-and-friends/how-to-support-your-loved-one. [Accessed January 2023].
  17. Irish Lung Fibrosis Association. Advice for carers of people with idiopathic pulmonary fibrosis. Available at: http://ilfa.ie/wp-content/uploads/2021/07/ILFACarersAdvicefinal.pdf. [Accessed January 2023].
  18. Mayo clinic. Support groups: make connections, get help. Available at: https://www.mayoclinic.org/healthy-lifestyle/stress-management/in-depth/support-groups/art-20044655. [Accessed January 2023].
  19. American Lung Association. Self-care tips for pulmonary fibrosis caregivers. Available at: https://www.lung.org/lung-health-diseases/lung-disease-lookup/pulmonary-fibrosis/family-and-friends/self-care-tips. [Accessed January 2023].
  20. Baile WF, Buckman R, Lenzi R, et al. SPIKES – A six-step protocol for delivering bad news: application to the patient with cancer. Oncologist. 2000;5:302–311.
  21. Wijsenbeek MS, Bonella F, Orsatti L, et al. Communicating with patients with idiopathic pulmonary fibrosis: can we do it better? ERJ Open Res. 2022;7:00422–2021.

Resources for patients