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Published in: Respiratory Research 1/2022

Open Access 01-12-2022 | Idiopathic Pulmonary Fibrosis | Research

Behavioural and psychological patterns of patients with idiopathic pulmonary fibrosis: a prospective study

Authors: Anouk Delameillieure, Fabienne Dobbels, Steffen Fieuws, Katleen Leceuvre, Sara Vanderauwera, Wim A. Wuyts

Published in: Respiratory Research | Issue 1/2022

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Abstract

Background

Idiopathic pulmonary fibrosis (IPF) is a chronic and progressive lung condition. Currently, care models predominantly focus on acute medical and pharmacological needs. As a step towards holistic care, the aim of this prospective study was to investigate the psychological and behavioural needs of IPF patients treated with pirfenidone from diagnosis until two years of follow-up.

Methods

The following variables were selected from the literature on patients’ needs and the COM-B model, a theoretical model explaining behaviour: medication adherence, barriers to adherence, importance and intentions of medication adherence, anxiety, depression, health literacy, knowledge, reported side effects, adherence to sun protection recommendations, alcohol use, physical activity, quality of life and health status. Linear and generalised linear models for longitudinal data were used to evaluate the evolution since treatment initiation.

Results

We included 66 outpatients: 72.7% men, mean age of 70.3 years (range 50–87), predicted mean forced vital capacity of 85.8% (SD 17.4) and predicted mean diffusing capacity for monoxide of 56.9% (SD 15.7). The participants placed considerable importance on following the treatment recommendations. We noticed difficulties regarding health literacy, alcohol use, pirfenidone adherence (decline over time) and adherence to sun protection recommendations (early in follow-up care). There were low levels of physical activity (no effect of time), high body mass indices (decline over time) and moderate levels of depression and anxiety.

Conclusion

When providing care to IPF patients, behavioural issues, health literacy and psychological well-being should be taken into consideration. There is a need to further explore interventions and care models to tackle these difficulties.
Trial registration This study was registered in the ClinicalTrials.gov database (identifier NCT03567785) on May 9th, 2018
Appendix
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Literature
1.
go back to reference Raghu G, Rochwerg B, Zhang Y, et al. An official ATS/ERS/JRS/ALAT clinical practice guideline: treatment of idiopathic pulmonary fibrosis. An Update of the 2011 Clinical Practice Guideline. Am J Respir Crit Care Med. 2015;192(2):e3-19.CrossRef Raghu G, Rochwerg B, Zhang Y, et al. An official ATS/ERS/JRS/ALAT clinical practice guideline: treatment of idiopathic pulmonary fibrosis. An Update of the 2011 Clinical Practice Guideline. Am J Respir Crit Care Med. 2015;192(2):e3-19.CrossRef
2.
go back to reference Khor YH, Ng Y, Barnes H, et al. Prognosis of idiopathic pulmonary fibrosis without anti-fibrotic therapy: a systematic review. Eur Respir Rev. 2020;29(157): 190158.CrossRef Khor YH, Ng Y, Barnes H, et al. Prognosis of idiopathic pulmonary fibrosis without anti-fibrotic therapy: a systematic review. Eur Respir Rev. 2020;29(157): 190158.CrossRef
3.
go back to reference King TE, Pardo A, Selman M. Idiopathic pulmonary fibrosis. Lancet. 2011;378(9807):1949–61.CrossRef King TE, Pardo A, Selman M. Idiopathic pulmonary fibrosis. Lancet. 2011;378(9807):1949–61.CrossRef
4.
go back to reference Swigris JJ, Kuschner WG, Jacobs SS, et al. Health-related quality of life in patients with idiopathic pulmonary fibrosis: a systematic review. Thorax. 2005;60(7):588–94.CrossRef Swigris JJ, Kuschner WG, Jacobs SS, et al. Health-related quality of life in patients with idiopathic pulmonary fibrosis: a systematic review. Thorax. 2005;60(7):588–94.CrossRef
5.
go back to reference Maher TM, Strek ME. Antifibrotic therapy for idiopathic pulmonary fibrosis: time to treat. Respir Res. 2019;20(1):205.CrossRef Maher TM, Strek ME. Antifibrotic therapy for idiopathic pulmonary fibrosis: time to treat. Respir Res. 2019;20(1):205.CrossRef
6.
go back to reference Lee JYT, Tikellis G, Corte TJ, et al. The supportive care needs of people living with pulmonary fibrosis and their caregivers: a systematic review. Eur Respir Rev. 2020;29(156): 190125.CrossRef Lee JYT, Tikellis G, Corte TJ, et al. The supportive care needs of people living with pulmonary fibrosis and their caregivers: a systematic review. Eur Respir Rev. 2020;29(156): 190125.CrossRef
7.
go back to reference Bonella F, Wijsenbeek M, Molina-Molina M, et al. European IPF Patient Charter: unmet needs and a call to action for healthcare policymakers. Eur Respir J. 2016;47(2):597–606.CrossRef Bonella F, Wijsenbeek M, Molina-Molina M, et al. European IPF Patient Charter: unmet needs and a call to action for healthcare policymakers. Eur Respir J. 2016;47(2):597–606.CrossRef
8.
go back to reference World Medical Association. World Medical Association Declaration of Helsinki: ethical principles for medical research involving human subjects. JAMA. 2013;310(20):2191–4. World Medical Association. World Medical Association Declaration of Helsinki: ethical principles for medical research involving human subjects. JAMA. 2013;310(20):2191–4.
9.
go back to reference Michie S, van Stralen MM, West R. The behaviour change wheel: a new method for characterising and designing behaviour change interventions. Implement Sci. 2011;6(1):42.CrossRef Michie S, van Stralen MM, West R. The behaviour change wheel: a new method for characterising and designing behaviour change interventions. Implement Sci. 2011;6(1):42.CrossRef
10.
go back to reference Dobbels F, Berben L, De Geest S, et al. The psychometric properties and practicability of self-report instruments to identify medication nonadherence in adult transplant patients: a systematic review. Transplantation. 2010;90(2):205–19.CrossRef Dobbels F, Berben L, De Geest S, et al. The psychometric properties and practicability of self-report instruments to identify medication nonadherence in adult transplant patients: a systematic review. Transplantation. 2010;90(2):205–19.CrossRef
11.
go back to reference Francis JJ, Eccles MP, Johnston M, et al. Constructing questionnaires based on the theory of planned behaviour: a manual for health services researchers. Newcastle upon Tyne Univ Newcastle 2004;42. Francis JJ, Eccles MP, Johnston M, et al. Constructing questionnaires based on the theory of planned behaviour: a manual for health services researchers. Newcastle upon Tyne Univ Newcastle 2004;42.
12.
go back to reference Spitzer RL, Kroenke K, Williams JBW, et al. A brief measure for assessing generalized anxiety disorder: the gad-7. Arch Intern Med. 2006;166(10):1092–7.CrossRef Spitzer RL, Kroenke K, Williams JBW, et al. A brief measure for assessing generalized anxiety disorder: the gad-7. Arch Intern Med. 2006;166(10):1092–7.CrossRef
13.
go back to reference Kroenke K, Spitzer RL, Williams JBW. The PHQ-9: Validity of a Brief Depression Severity Measure. J Gen Intern Med. 2001;16(9):606–13.CrossRef Kroenke K, Spitzer RL, Williams JBW. The PHQ-9: Validity of a Brief Depression Severity Measure. J Gen Intern Med. 2001;16(9):606–13.CrossRef
14.
go back to reference Chew LD, Griffin JM, Partin MR, et al. Validation of screening questions for limited health literacy in a large VA outpatient population. J Gen Intern Med. 2008;23(5):561–6.CrossRef Chew LD, Griffin JM, Partin MR, et al. Validation of screening questions for limited health literacy in a large VA outpatient population. J Gen Intern Med. 2008;23(5):561–6.CrossRef
15.
go back to reference Costabel U, Bendstrup E, Cottin V, et al. Pirfenidone in idiopathic pulmonary fibrosis: expert panel discussion on the management of drug-related adverse events. Adv Ther. 2014;31(4):375–91.CrossRef Costabel U, Bendstrup E, Cottin V, et al. Pirfenidone in idiopathic pulmonary fibrosis: expert panel discussion on the management of drug-related adverse events. Adv Ther. 2014;31(4):375–91.CrossRef
16.
go back to reference Denhaerynck K, Berben L, Dobbels F, et al. Multilevel factors are associated with immunosuppressant nonadherence in heart transplant recipients: the international BRIGHT study. Am J Transplant. 2018;18(6):1447–60.CrossRef Denhaerynck K, Berben L, Dobbels F, et al. Multilevel factors are associated with immunosuppressant nonadherence in heart transplant recipients: the international BRIGHT study. Am J Transplant. 2018;18(6):1447–60.CrossRef
17.
go back to reference Bush K, Kivlahan DR, McDonell MB, et al. The audit alcohol consumption questions (audit-c): an effective brief screening test for problem drinking. Ambulatory care quality improvement project (ACQUIP). Alcohol Use Disorders Identification Test. Arch Intern Med. 1998;158(16):1789–95.CrossRef Bush K, Kivlahan DR, McDonell MB, et al. The audit alcohol consumption questions (audit-c): an effective brief screening test for problem drinking. Ambulatory care quality improvement project (ACQUIP). Alcohol Use Disorders Identification Test. Arch Intern Med. 1998;158(16):1789–95.CrossRef
18.
go back to reference Marshall A, Smith B, Bauman A, et al. Reliability and validity of a brief physical activity assessment for use by family doctors. Br J Sports Med. 2005;39(5):294–7.CrossRef Marshall A, Smith B, Bauman A, et al. Reliability and validity of a brief physical activity assessment for use by family doctors. Br J Sports Med. 2005;39(5):294–7.CrossRef
19.
go back to reference Patel AS, Siegert RJ, Brignall K, et al. The development and validation of the King’s Brief Interstitial Lung Disease (K-BILD) health status questionnaire. Thorax. 2012;67(9):804–10.CrossRef Patel AS, Siegert RJ, Brignall K, et al. The development and validation of the King’s Brief Interstitial Lung Disease (K-BILD) health status questionnaire. Thorax. 2012;67(9):804–10.CrossRef
20.
go back to reference Herdman M, Gudex C, Lloyd A, et al. Development and preliminary testing of the new five-level version of EQ-5D (EQ-5D-5L). Qual Life Res. 2011;20(10):1727–36.CrossRef Herdman M, Gudex C, Lloyd A, et al. Development and preliminary testing of the new five-level version of EQ-5D (EQ-5D-5L). Qual Life Res. 2011;20(10):1727–36.CrossRef
21.
go back to reference Jones PW, Quirck FH, Baveystock CM. The St George’s Respiratory Questionnaire. Respir Med. 1991;85(Suppl B):25–31.CrossRef Jones PW, Quirck FH, Baveystock CM. The St George’s Respiratory Questionnaire. Respir Med. 1991;85(Suppl B):25–31.CrossRef
22.
go back to reference Vancorenland S, Avalosse H, Verniest R, et al. Bilan des connaissances des Belges en matière de santé. MC-informations. 2014;258:48–55. Vancorenland S, Avalosse H, Verniest R, et al. Bilan des connaissances des Belges en matière de santé. MC-informations. 2014;258:48–55.
23.
go back to reference Chesser AK, Keene Woods N, Smothers K, et al. Health literacy and older adults: a systematic review. Gerontol Geriatr Med. 2016;2:2333721416630492.CrossRef Chesser AK, Keene Woods N, Smothers K, et al. Health literacy and older adults: a systematic review. Gerontol Geriatr Med. 2016;2:2333721416630492.CrossRef
24.
go back to reference Omachi TA, Sarkar U, Yelin EH, et al. Lower health literacy is associated with poorer health status and outcomes in chronic obstructive pulmonary disease. J Gen Intern Med. 2013;28(1):74–81.CrossRef Omachi TA, Sarkar U, Yelin EH, et al. Lower health literacy is associated with poorer health status and outcomes in chronic obstructive pulmonary disease. J Gen Intern Med. 2013;28(1):74–81.CrossRef
25.
go back to reference Moor CC, Mostard RLM, Grutters JC, et al. Patient expectations, experiences and satisfaction with nintedanib and pirfenidone in idiopathic pulmonary fibrosis: a quantitative study. Respir Res. 2020;21(1):196.CrossRef Moor CC, Mostard RLM, Grutters JC, et al. Patient expectations, experiences and satisfaction with nintedanib and pirfenidone in idiopathic pulmonary fibrosis: a quantitative study. Respir Res. 2020;21(1):196.CrossRef
26.
go back to reference Ryerson C, Kolb M, Cox G, et al. Real-world patterns of pirfenidone use and safety in patients with idiopathic pulmonary fibrosis in Canada: Data from INSPIRATION PLUS. Can J Respir Crit Care, Sleep Med. 2020;4(1):25–30. Ryerson C, Kolb M, Cox G, et al. Real-world patterns of pirfenidone use and safety in patients with idiopathic pulmonary fibrosis in Canada: Data from INSPIRATION PLUS. Can J Respir Crit Care, Sleep Med. 2020;4(1):25–30.
27.
go back to reference Majewski S, Białas AJ, Buchczyk M, et al. A multicentre retrospective observational study on Polish experience of pirfenidone therapy in patients with idiopathic pulmonary fibrosis: the PolExPIR study. BMC Pulm Med. 2020;20(1):122.CrossRef Majewski S, Białas AJ, Buchczyk M, et al. A multicentre retrospective observational study on Polish experience of pirfenidone therapy in patients with idiopathic pulmonary fibrosis: the PolExPIR study. BMC Pulm Med. 2020;20(1):122.CrossRef
28.
go back to reference El Alili M, Vrijens B, Demonceau J, et al. A scoping review of studies comparing the medication event monitoring system (MEMS) with alternative methods for measuring medication adherence. Br J Clin Pharmacol. 2016;82(1):268–79.CrossRef El Alili M, Vrijens B, Demonceau J, et al. A scoping review of studies comparing the medication event monitoring system (MEMS) with alternative methods for measuring medication adherence. Br J Clin Pharmacol. 2016;82(1):268–79.CrossRef
29.
go back to reference Helmy R, Duerinckx N, De Geest S, et al. The international prevalence and variability of nonadherence to the nonpharmacologic treatment regimen after heart transplantation: findings from the cross-sectional BRIGHT study. Clin Transplant. 2018;32(7): e13280.CrossRef Helmy R, Duerinckx N, De Geest S, et al. The international prevalence and variability of nonadherence to the nonpharmacologic treatment regimen after heart transplantation: findings from the cross-sectional BRIGHT study. Clin Transplant. 2018;32(7): e13280.CrossRef
30.
go back to reference Lee YJ, Choi SM, Lee YJ, et al. Clinical impact of depression and anxiety in patients with idiopathic pulmonary fibrosis. PLoS ONE. 2017;12(9): e0184300.CrossRef Lee YJ, Choi SM, Lee YJ, et al. Clinical impact of depression and anxiety in patients with idiopathic pulmonary fibrosis. PLoS ONE. 2017;12(9): e0184300.CrossRef
31.
go back to reference Akhtar AA, Ali MA, Smith RP. Depression in patients with idiopathic pulmonary fibrosis. Chron Respir Dis. 2013;10(3):127–33.CrossRef Akhtar AA, Ali MA, Smith RP. Depression in patients with idiopathic pulmonary fibrosis. Chron Respir Dis. 2013;10(3):127–33.CrossRef
32.
go back to reference Holland AE, Fiore JF, Bell EC, et al. Dyspnoea and comorbidity contribute to anxiety and depression in interstitial lung disease. Respirology. 2014;19(8):1215–21.CrossRef Holland AE, Fiore JF, Bell EC, et al. Dyspnoea and comorbidity contribute to anxiety and depression in interstitial lung disease. Respirology. 2014;19(8):1215–21.CrossRef
33.
go back to reference Tzouvelekis A, Karampitsakos T, Kourtidou S, et al. Impact of depression on patients with idiopathic pulmonary fibrosis. Front Med. 2020;7:29.CrossRef Tzouvelekis A, Karampitsakos T, Kourtidou S, et al. Impact of depression on patients with idiopathic pulmonary fibrosis. Front Med. 2020;7:29.CrossRef
34.
go back to reference Grenard JL, Munjas BA, Adams JL, et al. Depression and medication adherence in the treatment of chronic diseases in the United States: a meta-analysis. J Gen Intern Med. 2011;26(10):1175–82.CrossRef Grenard JL, Munjas BA, Adams JL, et al. Depression and medication adherence in the treatment of chronic diseases in the United States: a meta-analysis. J Gen Intern Med. 2011;26(10):1175–82.CrossRef
36.
go back to reference Nathan SD, Basavaraj A, Reichner C, et al. Prevalence and impact of coronary artery disease in idiopathic pulmonary fibrosis. Respir Med. 2010;104(7):1035–41.CrossRef Nathan SD, Basavaraj A, Reichner C, et al. Prevalence and impact of coronary artery disease in idiopathic pulmonary fibrosis. Respir Med. 2010;104(7):1035–41.CrossRef
37.
go back to reference Faverio P, Bocchino M, Caminati A, et al. Nutrition in patients with idiopathic pulmonary fibrosis: critical issues analysis and future research directions. Nutrients. 2020;12(4):1131.CrossRef Faverio P, Bocchino M, Caminati A, et al. Nutrition in patients with idiopathic pulmonary fibrosis: critical issues analysis and future research directions. Nutrients. 2020;12(4):1131.CrossRef
38.
go back to reference Nakatsuka Y, Handa T, Kokosi M, et al. The clinical significance of body weight loss in idiopathic pulmonary fibrosis patients. Respiration. 2018;96(4):338–47.CrossRef Nakatsuka Y, Handa T, Kokosi M, et al. The clinical significance of body weight loss in idiopathic pulmonary fibrosis patients. Respiration. 2018;96(4):338–47.CrossRef
40.
go back to reference Gomes-Neto M, Silva CM, Ezequiel D, et al. Impact of pulmonary rehabilitation on exercise tolerance and quality of life in patients with idiopathic pulmonary fibrosis: a systematic review and meta-analysis. J Cardiopulm Rehabil Prev 2018;38(5). Gomes-Neto M, Silva CM, Ezequiel D, et al. Impact of pulmonary rehabilitation on exercise tolerance and quality of life in patients with idiopathic pulmonary fibrosis: a systematic review and meta-analysis. J Cardiopulm Rehabil Prev 2018;38(5).
Metadata
Title
Behavioural and psychological patterns of patients with idiopathic pulmonary fibrosis: a prospective study
Authors
Anouk Delameillieure
Fabienne Dobbels
Steffen Fieuws
Katleen Leceuvre
Sara Vanderauwera
Wim A. Wuyts
Publication date
01-12-2022
Publisher
BioMed Central
Published in
Respiratory Research / Issue 1/2022
Electronic ISSN: 1465-993X
DOI
https://doi.org/10.1186/s12931-022-02041-6

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