The lived experience with idiopathic pulmonary fibrosis: a qualitative study

Overgaard, Dorthe; Kaldan, Gudrun; Marsaa, Kristoffer; Nielsen, Thyge L.; Shaker, Saher Burhan; Egerod, Ingrid

doi:10.1183/13993003.01566-2015

Cited by 82 publications

(135 citation statements)

References 31 publications

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“…It has been shown that patients have a clear understanding of their prognosis but lack assistance with understanding how their disease will progress [35]. Exploring the patients’ perspective, Overgaard and colleagues found that the fatality of the disease was overwhelming for patients and, therefore, the dose and timing of information are tricky [36]. Sampson and colleagues showed that the patients’ initial relief associated with not being diagnosed with cancer was replaced by shock associated with the prognosis of IPF [35].…”

Section: Discussionmentioning

confidence: 99%

Validation of the COPD Assessment Test (CAT) in patients with idiopathic pulmonary fibrosis

Grufstedt

Shaker

Konradsen

2018

European Clinical Respiratory Journal

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Introduction: Idiopathic pulmonary fibrosis (IPF) is a chronic disease with high morbidity and mortality. A reliable and manageable questionnaire that assesses patients’ quality of life is needed to help to improve the content of clinical consultations. The chronic obstructive pulmonary disease (COPD) Assessment Test (CAT) is used in clinical practice; therefore, the aim of this study was to investigate correlations among the CAT, St. George’s Respiratory Questionnaire (SGRQ) and clinical parameters among patients diagnosed with IPF.Methods: A retrospective cohort design was employed in which 87 patients diagnosed with IPF who were receiving treatment at an outpatient clinic were included.Results: The CAT was found to be significantly correlated with SGRQ (p < 0.001). Furthermore, the CAT was significantly correlated with all of the included physiological variables.Conclusions: This add to support the validity of the COPD Assessment test (CAT) as a measure of symptoms in patients with IPF which in clinical practice in combination with dialogue between healthcare professionals and the patient, can help to improve the content of a clinical consultation.

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Section: Discussionmentioning

confidence: 99%

Validation of the COPD Assessment Test (CAT) in patients with idiopathic pulmonary fibrosis

Grufstedt

Shaker

Konradsen

2018

European Clinical Respiratory Journal

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“…The active involvement of caregivers in pulmonary rehabilitation has been shown to result in improved coping strategies in patients and families and in psychosocial well-being [33]. It is common that the needs for information among caregivers and patients are not similar, and ACP can be one way to address this [34] and optimize communication between patient and caregiver(s) [34]. …”

Section: Bereaved Caregiversmentioning

confidence: 99%

Danish respiratory society position paper: palliative care in patients with chronic progressive non-malignant lung diseases

Marsaa

Gundestrup

Lange

et al. 2018

European Clinical Respiratory Journal

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Background: Chronic non-malignant lung diseases such as chronic obstructive pulmonary disease (COPD) and interstitial lung diseases (ILD) result in reduced quality of life (QoL), a high symptom burden and reduced survival. Patients with chronic non-malignant lung disease often have limited access to palliative care. The symptom burden and the QoL of these patients resembles patients with cancer and the general palliative approach is similar. However, the disease trajectory is often slow and unpredictable, and the palliative effort must be built on accessibility, continuity and professional competences. The Danish Health Authority as well as the WHO recommends that there is access to palliative care for all patients with life-threatening diseases regardless of diagnosis. In 2011, the Danish Health Authority requested that the national medical societies would to formulate guidelines for palliation. Methods: In 2015, a group of members of the Danish Respiratory Society (DRS) was appointed for this purpose. It was composed of experienced ILD and COPD researchers as well as clinicians from different parts of Denmark. A literature review was made, a draft was prepared, and all recommendations were agreed upon unanimously. Results: The Danish version of the position paper was finally submitted for review and accepted by all members of DRS. Conclusion: In this position paper we provide recommendations on the terminology of chronic and terminal lung failure, rehabilitation and palliative care, advanced care planning, informal caregivers and bereavement, symptom management, the imminently dying patient, and organization of palliative care for patients with chronic non-malignant lung diseases.

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“…In this issue of the European Respiratory Journal, OVERGAARD et al [5] give voice to idiopathic pulmonary fibrosis (IPF) experts: they studied 24 patient/caregiver dyads (and a 25th single patient) to better understand how IPF affected the patient, the caregiver and the patient-caregiver relationship. Among the 24 caregivers, 21 were spouses or ex-spouses, and 15 were men; thus, most of the patient subjects were presumably females.…”

Section: @Erspublicationsmentioning

confidence: 99%

“…They had to prepare for (or, in some cases, had already begun the process of ) shifting roles within the household: the patient relinquishing duties, while the caregiver assumed them. By using dyadic interviews (having the patient and a caregiver in the same session), OVERGAARD et al [5] promoted and observed interactions that would have been missed if the two were interviewed separately. As the authors recognise, this approach might also have had the unwanted effect of creating bias: a person may withhold information, alter answers or say only what s/he thinks the other person in the couple wants to hear.…”

Section: @Erspublicationsmentioning

confidence: 99%

“…OVERGAARD et al [5] used the framework method to conduct their analysis, which incorporated the process described above but also enabled thematic analysis from the perspective of the patient, the caregiver and the patient/caregiver couple [6]. The article contains an information-packed matrix within which the six themes are defined for each perspective.…”

Section: @Erspublicationsmentioning

confidence: 99%

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

Russell

Swigris

2016

Eur Respir J

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@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...

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The lived experience with idiopathic pulmonary fibrosis: a qualitative study

Cited by 82 publications

References 31 publications

Validation of the COPD Assessment Test (CAT) in patients with idiopathic pulmonary fibrosis

Validation of the COPD Assessment Test (CAT) in patients with idiopathic pulmonary fibrosis

Danish respiratory society position paper: palliative care in patients with chronic progressive non-malignant lung diseases

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

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