Pulmonary Fibrosis: Patients and Partners Seek Better Guidance

Key Takeaways

• At an interstitial lung disease referral center, patients with pulmonary fibrosis and their partners described consultations in which some patients felt that attention to tests and treatment eclipsed their lives beyond illness.
• Partners reported feeling excluded from consultations and wanted their contributions recognized.
• Patients differed in when and how much information they wanted about future illness.
• Facing future caregiving needs, partners described uncertainty and wanted practical and emotional support.

Pulmonary fibrosis can make changing symptoms and care needs difficult to anticipate. Patients may wonder how their lives will change, while partners may wonder what supporting them will involve. Conversations about future illness pose a challenge when preferences for timing and detail differ. Understanding both perspectives requires hearing from people living with the condition and those close to them.

At a Dutch interstitial lung disease referral center, 15 patients with pulmonary fibrosis and 10 informal caregivers, all partners and including a bereaved partner, participated in a qualitative study. Pulmonologists and a multidisciplinary team had diagnosed the patients, who were eligible regardless of prognosis; 87% were male, and idiopathic pulmonary fibrosis was the predominant diagnosis. Investigators sampled purposively across age, sex, and illness phase, recruiting through consultations and a Dutch pulmonary fibrosis patient organization.

Participants contributed once, through one online focus group of two patients, 13 individual interviews, or five dyadic interviews; interviews took place online, at home, or in clinic. Investigators alternated data collection with inductive coding using Braun and Clarke’s reflexive thematic analysis. They used reflexive memos, checked their summaries with participants during interviews, and discussed interpretations within the research team while maintaining an audit trail.

Two overarching themes concerned recognition beyond illness and guidance across the illness trajectory, each encompassing patient and partner perspectives. Patients described lives and concerns beyond pulmonary fibrosis: consultations could dwell on tests and treatment while emotional and social concerns went unaddressed. Some valued personal rapport, others prioritized expertise, and some felt supported. One patient found it difficult to raise questions after a computer-centered discussion of stable disease. Partners wanted recognition and inclusion, both for their own concerns and for their contribution to recalling information; one described feeling excluded when a clinician addressed only the patient. Patients also wanted help navigating care, discussing end-of-life concerns, and learning about possible illness scenarios and prognosis beyond survival time. Preferred timing and detail varied. Partners sought information on responding to breathlessness, coordinating appointments, and finding support amid anticipatory grief; one worried about what to do when breathing became difficult.

The accounts came from a single referral center, with predominantly male patients and partners rather than other family caregivers. Limited group discussion, potentially constrained disclosure in joint interviews, and differing online, home, and clinic settings during the pandemic may have shaped what participants shared. Clinical stage was not collected, precluding comparison of experiences across stages. Investigators interpreted the accounts as identifying perceived gaps in personal recognition, partner involvement, and help navigating illness, not measured rates of unmet need or evidence that a palliative-care intervention improves outcomes.

The authors concluded that patients sought recognition as people living with pulmonary fibrosis, while patients and partners wanted guidance as illness and care needs changed. Their accounts expressed a need for support extending into later illness.

Clinician Questions

How did patients with pulmonary fibrosis describe the interstitial lung disease nurse’s role?

A few patients with pulmonary fibrosis described direct access to an interstitial lung disease nurse as accessible and supportive. Most did not know the extent of the nurse’s role or contacted the nurse mainly for prescription renewals.

What additional concerns did patients with familial pulmonary fibrosis raise about their families?

Patients with familial pulmonary fibrosis raised concerns about work, family history, and possible risks to their children, and felt these concerns received little attention in care conversations.

Recommended Reading

• For more on the patient journey in fibrotic ILD: Advancing Precision Medicine in Fibrotic Interstitial Lung Disease