Exploration of the unmet needs of patients diagnosed with idiopathic pulmonary fibrosis: a scoping review protocol

Introduction Interstitial lung diseases consist of a range of lung disorders, the most prevalent being idiopathic pulmonary fibrosis (IPF). IPF is a chronic, progressive disease, resulting in loss of lung function and potentially significant impacts on quality of life. There is an increasing need to address unmet needs in this population as there is evidence that unmet needs may impact quality of life and health outcomes. The key objective of this scoping review is to define the unmet needs of patients living with a diagnosis of IPF and to identify gaps in the literature relating to unmet needs. Findings will inform the development of services and the introduction of patient-centred clinical care guidelines for IPF. Methods and analysis This scoping review is guided by the methodological framework for conducting scoping reviews developed by the Joanna Briggs Institute. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews checklist is used for guidance. The following databases will be searched: CINAHL, MEDLINE, PsycINFO, Web of Science, Embase and ASSIA and include a comprehensive grey literature search. The review will report on adult patients >18 with a diagnosis of IPF or pulmonary fibrosis and be limited to publications from 2011 onwards, with no language restrictions applied. Two independent reviewers will screen articles in consecutive stages for relevance against the inclusion and exclusion criteria. Data will be extracted using a predefined data extraction form and analysed using descriptive and thematic analysis. Findings will be presented in tabular form, coupled with a narrative summary of the evidence. Ethics and dissemination Ethics approval is not required for this scoping review protocol. We will disseminate our findings using traditional approaches that include open access peer-reviewed publications and scientific presentations.

[1]  P. Molyneaux,et al.  Interstitial lung disease incidence and mortality in the UK and the European Union: an observational study, 2001–2017 , 2022, ERJ Open Research.

[2]  G. Tikellis,et al.  Barriers and facilitators to best care for idiopathic pulmonary fibrosis in Australia , 2021, Respirology.

[3]  Y. Inoue,et al.  Idiopathic pulmonary fibrosis: Physician and patient perspectives on the pathway to care from symptom recognition to diagnosis and disease burden , 2021, Respirology.

[4]  Jessica Mcfarlin,et al.  Palliative Care for the Interstitial Lung Disease Patient a Must and Not Just a Need , 2021, The American journal of hospice & palliative care.

[5]  M. Wijsenbeek,et al.  Patient Reported Experiences and Delays During the Diagnostic Pathway for Pulmonary Fibrosis: A Multinational European Survey , 2021, Frontiers in Medicine.

[6]  M. Kreuter,et al.  Global incidence and prevalence of idiopathic pulmonary fibrosis , 2021, Respiratory Research.

[7]  C. Moor,et al.  The Value of the Surprise Question to Predict One-Year Mortality in Idiopathic Pulmonary Fibrosis: A Prospective Cohort Study , 2021, Respiration.

[8]  K. Gibson,et al.  Nurse-Led Palliative Care Improves Knowledge and Preparedness in Caregivers of Patients with Idiopathic Pulmonary Fibrosis. , 2021, Annals of the American Thoracic Society.

[9]  F. Dobbels,et al.  Patients’ and healthcare professionals’ perspectives on the idiopathic pulmonary fibrosis care journey: a qualitative study , 2021, BMC Pulmonary Medicine.

[10]  Micah D J Peters,et al.  Updated methodological guidance for the conduct of scoping reviews , 2020, JBI evidence synthesis.

[11]  E. Bargagli,et al.  Long-Term Follow-Up of Patients With Idiopathic Pulmonary Fibrosis Treated With Pirfenidone or Nintedanib: A Real-Life Comparison Study , 2020, Frontiers in Molecular Biosciences.

[12]  T. Morita,et al.  Palliative care for idiopathic pulmonary fibrosis patients: Pulmonary physicians' view. , 2020, Journal of pain and symptom management.

[13]  G. Tikellis,et al.  The supportive care needs of people living with pulmonary fibrosis and their caregivers: a systematic review , 2020, European Respiratory Review.

[14]  F. Luppi,et al.  What patients with Idiopathic Pulmonary Fibrosis and caregivers want - Filling the currents gaps with patient reported outcomes and experience measures. , 2020, The American journal of medicine.

[15]  Z. Daniil,et al.  Efficacy and safety of nintedanib in a Greek multicentre idiopathic pulmonary fibrosis registry: a retrospective, observational, cohort study , 2020, ERJ Open Research.

[16]  AR Tyas,et al.  S43 Has introduction of severity criteria improved palliative care provision for patients with idiopathic pulmonary fibrosis? , 2019, Integrative working to improve patient experience in lung disease.

[17]  A. Prasse,et al.  Gaps in care of patients living with pulmonary fibrosis: a joint patient and expert statement on the results of a Europe-wide survey , 2019, ERJ Open Research.

[18]  Zachary Munn,et al.  Systematic review or scoping review? Guidance for authors when choosing between a systematic or scoping review approach , 2018, BMC Medical Research Methodology.

[19]  A. Holland,et al.  Understanding the patient's experience of care in idiopathic pulmonary fibrosis , 2018, Respirology.

[20]  J. McGowan,et al.  PRISMA Extension for Scoping Reviews (PRISMA-ScR): Checklist and Explanation , 2018, Annals of Internal Medicine.

[21]  M. Kreuter,et al.  Identifying Barriers to Idiopathic Pulmonary Fibrosis Treatment: A Survey of Patient and Physician Views , 2018, Respiration.

[22]  R. Kaarteenaho,et al.  Delay and inequalities in the treatment of idiopathic pulmonary fibrosis: the case of two Nordic countries , 2018, Multidisciplinary Respiratory Medicine.

[23]  Sarah Meadows,et al.  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?’ , 2018, BMJ open quality.

[24]  M. Kreuter,et al.  Palliative care in interstitial lung disease: living well. , 2017, The Lancet. Respiratory medicine.

[25]  A. Russell,et al.  Unmet needs in the treatment of idiopathic pulmonary fibrosis―insights from patient chart review in five European countries , 2017, BMC Pulmonary Medicine.

[26]  J. Yorke,et al.  Palliative care and interstitial lung disease , 2017, Current opinion in supportive and palliative care.

[27]  A. Chetta,et al.  The earlier, the better: Impact of early diagnosis on clinical outcome in idiopathic pulmonary fibrosis. , 2017, Pulmonary pharmacology & therapeutics.

[28]  R. McFadden,et al.  Trends in diagnosis and management of idiopathic pulmonary fibrosis in Canada , 2017 .

[29]  J. Geelhoed,et al.  Optimizing quality of life in patients with idiopathic pulmonary fibrosis , 2017, Therapeutic advances in respiratory disease.

[30]  H. Hoogsteden,et al.  What patients with pulmonary fibrosis and their partners think: a live, educative survey in the Netherlands and Germany , 2017, ERJ Open Research.

[31]  D. Lynch,et al.  Acute Exacerbation of Idiopathic Pulmonary Fibrosis. An International Working Group Report. , 2016, American journal of respiratory and critical care medicine.

[32]  J. McGowan,et al.  PRESS Peer Review of Electronic Search Strategies: 2015 Guideline Statement. , 2016, Journal of clinical epidemiology.

[33]  Y. Moodley,et al.  Idiopathic Pulmonary Fibrosis and the Elderly: Diagnosis and Management Considerations , 2016, Drugs & Aging.

[34]  C. Janson,et al.  End-of-life care in oxygen-dependent ILD compared with lung cancer: a national population-based study , 2016, Thorax.

[35]  A. Russell,et al.  Qualitative European survey of patients with idiopathic pulmonary fibrosis: patients’ perspectives of the disease and treatment , 2016, BMC Pulmonary Medicine.

[36]  A. Nelson,et al.  The care needs of patients with idiopathic pulmonary fibrosis and their carers (CaNoPy): results of a qualitative study , 2015, BMC Pulmonary Medicine.

[37]  W. Wuyts,et al.  European IPF Patient Charter: unmet needs and a call to action for healthcare policymakers , 2015, European Respiratory Journal.

[38]  N. Chaudhuri,et al.  IPF Care: A Support Program for Patients with Idiopathic Pulmonary Fibrosis Treated with Pirfenidone in Europe , 2015, Advances in Therapy.

[39]  Augustine S. Lee,et al.  The burden of idiopathic pulmonary fibrosis: an unmet public health need. , 2014, Respiratory medicine.

[40]  D. Janssen,et al.  Palliative care and pulmonary rehabilitation. , 2014, Clinics in chest medicine.

[41]  and Quality,et al.  Assessing the Accuracy of Google Translate to Allow Data Extraction From Trials Published in Non-English Languages , 2013 .

[42]  L. Spencer,et al.  Perceptions, experiences and information needs of patients with idiopathic pulmonary fibrosis (IPF): A qualitative study , 2012 .

[43]  A. Cohen,et al.  Living with idiopathic pulmonary fibrosis , 2011, Chronic respiratory disease.

[44]  A. Cohen,et al.  Living With Idiopathic Pulmonary Fibrosis (IPF): An In-Depth Qualitative Survey Of European Patients , 2011, ATS 2011.

[45]  Takeshi Johkoh,et al.  American Thoracic Society Documents An Official ATS / ERS / JRS / ALAT Statement : Idiopathic Pulmonary Fibrosis : Evidence-based Guidelines for Diagnosis and Management , 2011 .

[46]  H. Collard,et al.  Clinical course and prediction of survival in idiopathic pulmonary fibrosis. , 2011, American journal of respiratory and critical care medicine.

[47]  G. Oster,et al.  Incidence and prevalence of idiopathic pulmonary fibrosis. , 2006, American journal of respiratory and critical care medicine.

[48]  J. Sim,et al.  The kappa statistic in reliability studies: use, interpretation, and sample size requirements. , 2005, Physical therapy.

[49]  K. Gibson,et al.  The palliative care needs of patients with idiopathic pulmonary fibrosis: A qualitative study of patients and family caregivers , 2017, Heart & lung : the journal of critical care.

[50]  E. White,et al.  Disparities in Lung Transplantation Among Patients with Idiopathic Pulmonary Fibrosis: Data from the IPF-PRO Registry , 2022, TP26. TP026 DIAGNOSIS, ASSESSMENT, AND PROGNOSIS OF FIBROTIC ILD.