Providing Patient-Centered Care in Interstitial Lung Disease

Wong, Alyson W.; Danoff, Sonye K.

doi:10.1016/j.ccm.2021.03.003

Cited by 3 publications

(8 citation statements)

References 58 publications

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“…For example, patients with PF often seek emotional support through online platforms, which allow the expression of their own experiences with the disease, posing questions on current research and treatment, and sharing helpful resources with each other ( 47 ). Specifically, peer support groups and resources tailored for patients and their caregivers assist in distributing comprehensive education about the condition ( 48 ). Alongside social media and Internet support groups, other methods of seeking emotional support can include being matched with peers over the telephone.…”

Section: Methodsmentioning

confidence: 99%

“…Because ILD is chronic, receiving individualized information from healthcare professionals as the disease progresses is an essential need expressed by patients, including those who eventually receive palliative care ( 25 ). Over half of patients report being underinformed about treatments and interventions, as well as lung transplants, which can contribute to increased anxiety because of making challenging decisions in treatment plans ( 48 ). For example, oxygen therapy is a common intervention initiated as ILD progresses ( 16 ).…”

Section: Methodsmentioning

confidence: 99%

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Current Landscape and Future Directions of Patient Education in Adults with Interstitial Lung Disease

Savvaides,

Demetres,

Aronson

2024

ATS Scholar

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Background Understandable, comprehensive, and accessible educational materials for patients with interstitial lung disease (ILD) are lacking. Patients consistently ask for improved access to evidence-based information about ILD. Nonetheless, few research studies focus directly on developing and evaluating interventions to improve patient knowledge. Objective We describe the current landscape of patient education in ILD, identify gaps in current approaches to information delivery, and provide frameworks to address these challenges through novel educational tools. Methods A literature review was conducted in collaboration with a medical librarian (M.R.D.) in April 2022 using Ovid MEDLINE (1946–), Embase (1947–), Cochrane Central (1993–), and CINAHL (1961–). Search terms included “interstitial lung disease,” “pulmonary fibrosis,” “patient education,” and “information seeking behavior” ( see the data supplement for full search terms). Reference lists from selected articles were used to identify additional studies. Results Currently, patient education is commonly combined with exercise regimens in pulmonary rehabilitation programs in which benefits of the educational component alone are unclear. Few studies investigate improving knowledge access and acquisition for patients with ILD and their caregivers regarding self-management, oxygen use, and palliative care plans. Online distribution of health information through social media runs the risk of being unregulated and outdated, although it is an avenue of increasing accessibility. Conclusion By expanding access to novel ILD-specific education programs and accounting for social determinants of health that impact healthcare access, patient education has the potential to become more attainable, improving patient-centered outcomes. Further research into optimal development, delivery, and efficacy testing of patient education modalities in ILD is warranted.

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Section: Methodsmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

Current Landscape and Future Directions of Patient Education in Adults with Interstitial Lung Disease

Savvaides,

Demetres,

Aronson

2024

ATS Scholar

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“…2,8,9 The PCC approach has previously been applied to the management of patients with other chronic conditions, including chronic kidney disease 10 and interstitial lung disease. 9 This review applies the domains of structure, process, and outcome to advocate for a PFCC approach in SBS management. It highlights needs and priorities of patients with SBS and their families and suggests ways to address gaps in existing care to improve outcomes.…”

Section: Introductionmentioning

confidence: 99%

“…This framework can serve as a roadmap to guide healthcare systems and practitioners in providing PFCC. 2,8,9 The PCC approach has previously been applied to the management of patients with other chronic conditions, including chronic kidney disease 10 and interstitial lung disease. 9 This review applies the domains of structure, process, and outcome to advocate for a PFCC approach in SBS management.…”

Section: Introductionmentioning

confidence: 99%

“…Interactions between patients, families, and healthcare providers fall into the process domain, whereas the value achieved from the implementation of a PCC or PFCC approach is classified as outcomes . This framework can serve as a roadmap to guide healthcare systems and practitioners in providing PFCC 2,8,9 . The PCC approach has previously been applied to the management of patients with other chronic conditions, including chronic kidney disease 10 and interstitial lung disease 9 …”

Section: Introductionmentioning

confidence: 99%

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Advocating for a patient‐ and family centered care approach to management of short bowel syndrome

Kumpf

Neumann

Kakani³

2023

Nut in Clin Prac

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Patient-and family centered care (PFCC) is a model of providing healthcare that incorporates the preferences, needs, and values of the patient and their family and is built on a solid partnership between the healthcare team and patient/family. This partnership is critical in short bowel syndrome (SBS) management since the condition is rare, chronic, involves a heterogenous population, and calls for a personalized approach to care. Institutions can facilitate the practice of PFCC by supporting a teamwork approach to care, which, in the case of SBS, ideally involves a comprehensive intestinal rehabilitation program consisting of qualified healthcare practitioners who are supported with the necessary resources and budget. Clinicians can engage in a range of processes to center patients and families in the management of SBS, including fostering whole-person care, building partnerships with patients and families, cultivating communication, and providing information effectively. Empowering patients to self-manage important aspects of their condition is an important component of PFCC and can enhance coping to chronic disease.Therapy nonadherence represents a breakdown in the PFCC approach to care, especially when nonadherence is sustained, and the healthcare provider is intentionally misled. An individualized approach to care that incorporates patient/family priorities should ultimately enhance therapy adherence. Lastly, patients/families should play a central role in determining meaningful outcomes as it relates to PFCC and shaping the research that affects them. This review highlights needs and priorities of patients with SBS and their families and suggests ways to address gaps in existing care to improve outcomes.

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