Understanding the informational needs of patients with IPF and their caregivers: ‘You get diagnosed, and you ask this question right away, what does this mean?’

Abstract

BackgroundIdiopathic pulmonary fibrosis (IPF) is a progressive, incurable lung disease whose intrusive symptoms rob patients of their quality of life. Patients with IPF rely on their caregivers for support and assistance in amounts that vary according to patients’ individual circumstances and disease severity. Knowledgeable and well-informed patients and caregivers are best suited to deal with life-altering conditions like IPF.MethodsWe conducted two hour-long focus groups with 13 patients with IPF and 4 caregivers of patients with IPF to better understand their informational needs and in what format such information should be delivered.ResultsPatients discussed the challenges IPF creates in their daily lives. They wanted information on how to live well despite having IPF, practical information on how they could remain active and travel and how they could preserve their quality of life despite living with a life-threatening disease like IPF. Caregivers wanted information on the general aspects of IPF, because it would help them understand what patients were going through. They also wanted specific information on how to give care to a patient with IPF, even when physical care may not be needed (as in earlier phases of the disease). Patients and caregivers both needed efficient information delivery from trustworthy sources, including the healthcare team involved in their care. They considered both spoken and written information valuable, and ease of access was critical.ConclusionThis study provides valuable insight regarding the informational needs of IPF patients and their caregivers. It is hoped that identifying or creating sources of this information, and insuring that patients and caregivers have access to it, will improve well-being for patients with IPF and their caregivers.

Understanding the patient's experience of care in idiopathic pulmonary fibrosis

“…Many participants in this study expressed a desire to know what the future would hold for them. The importance of understanding prognosis, on an individual level rather than a group average, also emerged in our previous qualitative research and that of others . However, it contrasts with another recent qualitative study where many were ambivalent about receiving information about disease progression .…”

“…The importance of understanding prognosis, on an individual level rather than a group average, also emerged in our previous qualitative research 16 and that of others. 17 However, it contrasts with another recent qualitative study where many were ambivalent about receiving information about disease progression. 18 Other authors have reported that carers were more likely than patients to seek frank information about prognosis, especially if the patient was deteriorating.…”

What Patients With Idiopathic Pulmonary Fibrosis and Caregivers Want: Filling the Gaps With Patient Reported Outcomes and Experience Measures

“…PROMs alone will not lead to improved outcomes without a change in clinicians' approach to care. Ramadurai et al 58 explored the education and information gaps and described both disease-specific as well as individualized content for both patients and caregivers: Education is key because it increases understanding, sense of control, and empowerment. Such information needs to be delivered at the first visit and revisited throughout the course of the disease.…”

“…Poor perceived and worsened QoL (physical, psychosocial, emotional, spiritual, and existential needs) 27,58 Lack of: 1) whole person approach; 2) standardized approach to needs assessment; 3) time to properly assess these needs Provide strategies to preserve QoL Provide anticipatory guidance, use of symptom action plans. Educational resources for patients and caregiver K-BILD, 38 ATAQ-IPFca, 37 SGRQ-IPF, 36 L-IPF, 39 NAT: PD-interstitial lung disease 56 27,75,76 Lack of: 1) PC approach and delayed referral; 2) clinical guidelines; 3) training in sensitive, patient-centered communication Implement end-to-end patient-centered care models Adopt early advanced care planning Provide education and support to the MDT NAT: PD-interstitial lung disease 56 (for palliative care needs), MSAS, 82 MYMOP, 57 L-IPF, 39 K-B interstitial lung disease (to assess QoL and quality of dying), 38 IPF-PREM (to assess care delivery processes) Caregiver distress and increased burden 27 Lack of: 1) understanding of the caregiver needs and engagement; 2) anticipatory guidance;…”

Transitions and touchpoints in idiopathic pulmonary fibrosis

“…In an interesting paradox, some caregivers, for the first time in the course of their loved-one’s disease, perceive themselves as truly useful at this transition: instead of just being a ‘nag’, caregivers can give physical care—helping with the logistics of O 2 and taking on more household duties. 9 …”