scholarly journals Idiopathic Pulmonary Fibrosis (IPF); Physical, Psychological, social impact on quality of life, and the impact of pulmonary rehabilitation as a mode of palliative care on Physical and Physiological markers

2019 ◽  
Author(s):  
Sameera P. Senanayake
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Idiopathic Pulmonary Fibrosis ◽  
Pulmonary Fibrosis ◽  
Pulmonary Rehabilitation ◽  
Social Impact ◽  
Physiological Markers ◽  
The Impact

scholarly journals The impact of palliative care on quality of life, anxiety, and depression in idiopathic pulmonary fibrosis: a randomized controlled pilot study

2020 ◽  
Vol 21 (1) ◽  
Author(s):  
Katherine Janssen ◽  
Drew Rosielle ◽  
Qi Wang ◽  
Hyun Joo Kim
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Pilot Study ◽  
Idiopathic Pulmonary Fibrosis ◽  
Pulmonary Fibrosis ◽  
Usual Care ◽  
Anxiety And Depression ◽  
Randomized Controlled ◽  
The Impact

Abstract Background Idiopathic pulmonary fibrosis (IPF) is a fatal disease that results in poor quality of life due to progressive respiratory symptoms, anxiety, and depression. Palliative care improves quality of life and survival in other progressive diseases. No randomized controlled trials have investigated the impact of palliative care on quality of life, anxiety, or depression in IPF. Methods We conducted a randomized, controlled, pilot study to assess the feasibility of measuring the effect of a palliative care clinic referral on quality of life, anxiety, and depression in IPF. Patients were randomized to usual care (UC) or usual care + palliative care (UC + PC) with routine pulmonary follow up at 3 and 6 months. The UC + PC group received a minimum of one PC clinic visit. Primary outcome was change from baseline in quality of life, anxiety, and depression as measured by the St. George’s Respiratory Questionnaire (SGRQ), the Hospital Anxiety and Depression Index (HADS), and the Patient Health Questionnaire (PHQ-9) at 6 months. Results Twenty-two patients were randomized between September 2017 through July 2018; 11 to UC and 11 to UC + PC. There was no difference in the change in SGRQ score at 3 months or 6 months, however, the symptom score trended towards a significant worsening for UC + PC at both 3 and 6 months (mean change at 3 months for UC and UC + PC was − 7.8 and + 10.7, respectively, p = 0.066; mean change at 6 months for UC and UC + PC was − 6.0 and + 4.6, respectively, p = 0.055). There was no difference in the change in HADS anxiety or depression scores. There was a significant transient worsening in PHQ-9 scores for UC + PC at 3 months (UC: -1.6, UC + PC: + 0.9, p = 0.008); this effect did not persist at 6 months. Conclusion This pilot study demonstrated that a randomized controlled trial of palliative care in idiopathic pulmonary fibrosis patients is feasible. Receiving palliative care did not lead to improved quality of life, anxiety, or depression compared to usual care after 6 months. Patients in the UC + PC group trended towards worsening symptoms and a small but statistically significant transient worsening in depression. These findings should be interpreted with caution, and need to be evaluated in adequately powered clinical trials. NCT03981406, June 10, 2019, retrospectively registered.

scholarly journals The efficacy of pulmonary rehabilitation in improving the clinical status in idiopathic pulmonary fibrosis

2020 ◽  
pp. 35-44
Author(s):  
Nicoleta Stefania MOTOC ◽  
Anca Diana MAIEREAN ◽  
Milena Adina MAN ◽  
Teodora Gabriela ALEXESCU ◽  
Lorena CIUMARNEAN ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Idiopathic Pulmonary Fibrosis ◽  
Pulmonary Fibrosis ◽  
Disease Progression ◽  
Pulmonary Rehabilitation ◽  
Psychosocial Support ◽  
Usual Interstitial Pneumonia ◽  
Chronic Obstructive

Idiopathic pulmonary fibrosis (IPF) is a chronic, progressive, fatal lung disease with a median survival rate of 2-4 years after diagnosis, occurring primarily in older adults. The diagnosis is suggested by histology or radiologic evidence of a usual interstitial pneumonia (UIP) pattern and exclusion of known cases of pulmonary fibrosis. There are some comorbidities associated with IPF such as pulmonary hypertension, emphysema, chronic obstructive pulmonary disease (COPD), asthma, lung cancer, cardiovascular disorders, gastroesophageal reflux disease (GERD), sleep disorders and psychiatric disturbances. The management of IPF focuses on the amelioration of symptoms, preserving lung function, improving health status, minimizing the adverse effects of therapy and improving survival. Pulmonary rehabilitation is suggested for IPF patients when adequate medical therapy controls poorly the disease progression and mental, physical or social consequences of the illness persist during daily life. Currently, there are only two approved available antifibrotic therapies, pirfenidone and nintedanib, capable to reduce disease progression and physical deterioration, but cure is elusive and improvements are hardly observed. In addition, there is a continuous need of non-drug therapy components which should be included in IPF patient management: education, psychosocial support, exercise training, nutrition, symptom management and palliative care, non-invasive ventilation and pulmonary transplant. These complementary therapies have been proven to improve dyspnea, exercise capacity, fatigue and quality of life. Key words: idiopathic pulmonary fibrosis, rehabilitation, quality of life, palliative care,

Impact of Pulmonary Rehabilitation on Exercise Tolerance and Quality of Life in Patients With Idiopathic Pulmonary Fibrosis

2018 ◽  
Vol 38 (5) ◽  
pp. 273-278 ◽  
Author(s):  
Mansueto Gomes-Neto ◽  
Cassio Magalhães Silva ◽  
Diego Ezequiel ◽  
Cristiano Sena Conceição ◽  
Micheli Saquetto ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Idiopathic Pulmonary Fibrosis ◽  
Pulmonary Fibrosis ◽  
Pulmonary Rehabilitation ◽  
Exercise Tolerance

scholarly journals Quality of life in idiopathic pulmonary fibrosis: The impact of sleep disordered breathing

2019 ◽  
Vol 147 ◽  
pp. 51-57 ◽  
Author(s):  
Marcello Bosi ◽  
Giulia Milioli ◽  
Liborio Parrino ◽  
Francesco Fanfulla ◽  
Sara Tomassetti ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Idiopathic Pulmonary Fibrosis ◽  
Pulmonary Fibrosis ◽  
Sleep Disordered Breathing ◽  
The Impact ◽  
Disordered Breathing

scholarly journals mMRC dyspnoea scale indicates impaired quality of life and increased pain in patients with idiopathic pulmonary fibrosis

2017 ◽  
Vol 3 (4) ◽  
pp. 00084-2017 ◽  
Author(s):  
Kaisa Rajala ◽  
Juho T. Lehto ◽  
Eva Sutinen ◽  
Hannu Kautiainen ◽  
Marjukka Myllärniemi ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Idiopathic Pulmonary Fibrosis ◽  
Pulmonary Fibrosis ◽  
Linear Relationship ◽  
Real Life ◽  
Symptom Burden ◽  
Cross Sectional ◽  
Edmonton Symptom Assessment Scale

This study was undertaken to investigate idiopathic pulmonary fibrosis (IPF) patients' health-related quality of life (HRQoL) and symptoms in a real-life cross-sectional study. Our secondary aim was to create a simple identification method for patients with increased need for palliative care by studying the relationship between modified Medical Research Council (mMRC) dyspnoea scale, HRQoL and symptoms.We sent a self-rating HRQoL questionnaire (RAND-36) and modified Edmonton Symptom Assessment Scale (ESAS) to 300 IPF patients; 84% of the patients responded to these questionnaires.The most prevalent (>80%) symptoms were tiredness, breathlessness, cough and pain in movement. An increasing mMRC score showed a linear relationship (p<0.001) to impaired HRQoL in all dimensions of RAND-36 and the severity of all symptoms in ESAS. Dimensions of RAND-36 fell below general population reference values in patients with mMRC score ≥2. The intensity of pain in movement (p<0.001) and at rest (p=0.041), and the prevalence of chest pain (p<0.001) had a positive linear relationship to increased mMRC score.An increasing mMRC score reflects impaired HRQoL and a high symptom burden. In clinical practice, the mMRC scale could be used for screening and identification of IPF patients with increased need for palliative care.

scholarly journals Randomised clinical trial of an early palliative care intervention (SUPPORT) for patients with idiopathic pulmonary fibrosis (IPF) and their caregivers: protocol and key design considerations

2018 ◽  
Vol 5 (1) ◽  
pp. e000272 ◽  
Author(s):  
Kathleen Oare Lindell ◽  
Mehdi Nouraie ◽  
Melinda J Klesen ◽  
Sara Klein ◽  
Kevin F Gibson ◽  
...  
Keyword(s):  
Palliative Care ◽  
Idiopathic Pulmonary Fibrosis ◽  
Pulmonary Fibrosis ◽  
Management Strategies ◽  
Randomised Trial ◽  
Self Management ◽  
Support Intervention ◽  
Quality Of Dying ◽  
The Impact

IntroductionIdiopathic pulmonary fibrosis (IPF), a progressive life-limiting lung disease affects approximately 128 000 newly diagnosed individuals in the USA annually. IPF, a disease of ageing associated with intense medical and financial burden, is expected to grow in incidence globally. Median survival from diagnosis is 3.8 years, and many of these patients succumb to a rapid death within 6 months. Despite the fatal prognosis, we have found that patients and caregivers often fail to understand the poor prognosis as the disease relentlessly progresses. Based on feedback from patients and families living with IPF, we developed the S-Symptom Management, U-Understanding the Disease, P-Pulmonary Rehabilitation, P-Palliative Care, O-Oxygen Therapy, R-Research Considerations and T-Transplantation (‘SUPPORT') intervention to increase knowledge of the disease, teach self-management strategies and facilitate preparedness with end of life (EOL) planning.MethodsThis study is a randomised trial to test the efficacy of SUPPORT intervention compared with routine care in patients with IPF and their caregivers delivered after three clinical visits. We are recruiting a cohort of 64 new IPF patient/caregiver dyads (32 for each dyad).ResultsThe trial will evaluate whether the SUPPORT intervention decreases stress, improves symptom burden, quality of life, preparedness and advance care planning for patients and caregivers, quality of dying and death for caregivers if the patient dies during the course of the study, as well as assess the impact of primary palliative care on healthcare resource use near the EOL.ConclusionBy increasing knowledge of the disease, teaching self-management strategies and facilitating preparedness with EOL planning, we will address a critical gap in the care of patients with IPF.Trial registration numberNCT02929017; Pre-results.

scholarly journals Effect of home-based pulmonary rehabilitation on functional capacity in people with idiopathic pulmonary fibrosis—a systematic review protocol

2021 ◽  
Vol 10 (1) ◽  
Author(s):  
Revati Amin ◽  
K. Vaishali ◽  
G. Arun Maiya ◽  
Aswini Kumar Mohapatra ◽  
Uday Narayan Yadav ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Idiopathic Pulmonary Fibrosis ◽  
Pulmonary Fibrosis ◽  
Functional Capacity ◽  
Pulmonary Rehabilitation ◽  
Secondary Outcome ◽  
Walk Test ◽  
Home Based

Abstract Background Idiopathic pulmonary fibrosis (IPF) is one of the common types of interstitial lung disease having high prevalence and mortality worldwide. As a result of patient-centred hindering factors of adherence to centre-based pulmonary rehabilitation (PR), home-based PR is an alternate mode of rehabilitating individuals with IPF. This systematic review will evaluate the effectiveness of unsupervised home-based PR on functional capacity and health-related quality of life (HRQoL) in individuals with IPF. Methods Clinically stable, high resolution computed tomography and physician diagnosed IPF participants having modified Medical Research Council score below 5 will be considered for the systematic review. Studies involving home-based PR as an intervention to treat individuals with IPF will be considered. Randomised controlled trials and quasi-randomised studies (with two groups followed up) are eligible to be included. Outcomes of our interest are functional capacity (6-min walk distance, shuttle walk test and incremental shuttle walk test) and secondary outcome measure would include assessment of quality of life and adverse effects of intervention. Electronic databases such as SCOPUS, Medline (PubMed and Web of Science), PEDRo and CINAHL will be searched using database specific terms. Additionally, forward and backward citations of included studies will be searched to identify potential records. Two review authors, independently, will conduct the screening, data extraction using a customised standard tool, and critical appraisal using Cochrane Risk of Bias 2 tool of included studies. If data permits, meta-analysis will be conducted. In case of substantial heterogeneity, we will do a narrative synthesis. Subgroup analysis will be undertaken based on various contextual and interventional factors. Discussion This review will provide comprehensive evidence on the effectiveness of unsupervised home-based PR to physiotherapists, policy makers and researchers who are interested in IPF management. Findings from this review may guide the development and evaluation of more robust evidence based home-based PR that aimed to improve functional capacity among people with IPF. Systematic review registration PROSPERO CRD42020213883.

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