What's it like to live with idiopathic pulmonary fibrosis? Ask the experts

Abstract

@ERSpublicationsSharing and informing IPF healthcare decisions through partnerships with patients and their caregivers http://ow.ly/YHp3XOver the last 5-7 years, an enlightened paradigm has emerged for clinical research. In it, patients are not simply "subjects" to be studied or numbers to be analysed; more than "key stakeholders", patients are increasingly (and justly) recognised as the soul and substance of clinical investigation [1]. Patient advocacy organisations have added significant momentum to this movement by promoting patient-centred healthcare and helping to give a global voice to those who suffer from a range of conditions or impairments. Recent discussion on stratified medicine advocates the inclusion of patient perspectives and experience to inform the often complex decision-making processes regarding treatment [2]. Governing bodies and funding organisations have developed policies, programmes and agendas that have largely shaped the paradigm by fostering patient-centred investigations and advocating that studies be designed to ask and answer questions deemed important to patients, and include outcomes that are meaningful to patients [3].How should a clinical investigator formulate questions that are important to patients and select outcomes that are meaningful to patients? The answer is simple: talk to the patients, the true experts of living with their condition. Informal caregivers (spouses, partners, loved ones of patients), sometimes referred to as invisible second patients because they are indirectly affected by the disease, are also experts who can provide rich insight into the patient's condition and adaptive behaviours that patients, themselves, may not see.Qualitative research methods, often operationalised by conducting interviews and/or focus groups, enable researchers to engage the experts of the target population to capture their experiences and perceptions. Sessions are recorded, transcribed verbatim and then analysed. Whilst, historically, qualitative research has been repudiated as inferior science, there is growing recognition of the value of qualitative methods, particularly for addressing questions of understanding. Qualitative and quantitative research methods have many similarities: in each, investigators start with a question, formulate a hypothesis, recruit subjects, collect data, and then analyse and interpret the results. There are also some differences: qualitative studies focus on questions of "how" and "why", so the analytic unit is text (words, phrases and sentences), rather than numeric values generated by the quantitative perspective of "how many" or "how often".In contrast to quantitative studies, in which protocols are necessarily cemented at the outset and remain unchanged throughout the course of the study, some qualitative investigators use a more fluid, malleable approach. For example, one or two interviews or focus groups are conducted, the data are analysed, and the findings are used to inform subsequent interviews or focus groups aimed at filling conspicuous...

Integrating Patient Perspectives into Personalized Medicine in Idiopathic Pulmonary Fibrosis

“…The importance of engaging patients in IPF care has gained increasing attention during the last several years ( 45 ). Recent qualitative studies have reported a need for better education about IPF, information about specific treatment options and palliative care, and access to specialist centers and specialist nurses.…”