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Published online: 2024-06-27

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Communication regarding sickness and end of life in patients with advanced chronic obstructive pulmonary disease: a multicenter questionnaire survey

Beata Brożek1, Iwona Damps-Konstańska2, Szymon Skoczyński3, Ewa Jassem4, Małgorzata Krajnik1

Abstract

Background: Higher levels of knowledge about the disease among patients with chronic obstructive pulmonary disease (COPD) were shown to result in better physician-patient communication. Nonetheless, a sizable percentage of patients within this group continue to lack sufficient information about their disease and prognosis. The objective of this study was to collect the opinions of COPD patients regarding their knowledge of their condition, the sources of this knowledge, the most important barriers to end-of-life communication, and the needs regarding such communication from a pneumonologist.

Subjects and methods: A questionnaire survey was carried out among 474 patients with advanced COPD at three pneumonology centers in Poland (Gdańsk, Katowice, Toruń). The questionnaire consisted of a total of 25 questions. The article presents the conclusions of the part of the survey relating to the level of patients’ knowledge of their condition and end-of-life communication with physicians.

Results: Slightly more than 40% of respondents declared their knowledge of the disease to be good or sufficient (“I have good knowledge or I have some knowledge”). The primary source of knowledge for survey participants was their physicians, albeit a vast majority of patients have not talked to their physicians about the subsequent course of their illness. The main barriers to end-of-life discussions as pointed out by the patients included insufficient time when visiting a specialist, the lack of notions regarding the further course of the disease, the lack of knowledge on the disease and end-of-life issues, or the reluctance to discuss such topics.

Conclusions: The analysis of the data confirms the continued deficit of knowledge regarding the future course of the disease among COPD patients as the majority of them have not discussed this issue with their physicians despite having identified them as the primary source of disease-related information.

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References

  1. Siltanen H, Aine T, Huhtala H, et al. The information needs of people with COPD-The holistic approach with special reference to gender and time since diagnosis. Nurs Open. 2021; 8(5): 2498–2508.
  2. Fischer C, Jörres RA, Alter P, et al. Basic determinants of disease knowledge in COPD patients: results from COSYCONET. Patient Prefer Adherence. 2022; 16: 1759–1770.
  3. Mousing C, Timm H, Kirkevold M, et al. Receiving home care and communicating aboutCOPD-related concerns and palliative care. Nordisk Sygeplejeforskning. 2018; 8(2): 107–121.
  4. Vogelmeier CF, Criner GJ, Martinez FJ, et al. Global strategy for the diagnosis, management, and prevention of chronic obstructive lung disease 2017 report: GOLD executive summary. Eur Respir J. 2017; 49(3): 1700214.
  5. Sandelowsky H, Krakau I, Modin S, et al. COPD patients need more information about self-management: a cross-sectional study in Swedish primary care. Scand J Prim Health Care. 2019; 37(4): 459–467.
  6. Dhurata I, Clari M, Matarese M. Patient knowledge on COPD. Eur Respir J. 2017; 50 (suppl. 61): PA2585.
  7. Matarese M, Lyons KS, Piredda M, et al. Disease-related knowledge in people with chronic obstructive pulmonary disease and their informal caregivers: a multilevel modelling analysis. J Clin Nurs. 2023; 32(13-14): 3543–3556.
  8. Damps-Konstańska I, Ciećko W, Jassem E, et al. Polish adaptation and psychometric validation of the PREM-C9 questionnaire for patients with chronic obstructive pulmonary disease. Healthcare (Basel). 2023; 11(20).
  9. Bandurska E. The voice of patients really matters: using patient-reported outcomes and experiences measures to assess effectiveness of home-based integrated care-a scoping review of practice. Healthcare (Basel). 2022; 11(1): 98.
  10. Wang T, Tan JY, Xiao LD, et al. Effectiveness of disease-specific self-management education on health outcomes in patients with chronic obstructive pulmonary disease: An updated systematic review and meta-analysis. Patient Educ Couns. 2017; 100(8): 1432–1446.
  11. Russell S, Ogunbayo OJ, Newham JJ, et al. Qualitative systematic review of barriers and facilitators to self-management of chronic obstructive pulmonary disease: views of patients and healthcare professionals. NPJ Prim Care Respir Med. 2018; 28(1): 2.
  12. Gutknecht P, Trzeciak B, Siebert J. Wiedza pacjentów na temat przewlekłej obturacyjnej choroby płuc. Fam Med Prim Care Rev. 2024; 16(2): 99–100.
  13. Dobek R, Farnik M, Franczuk M, et al. Ścieżka chorego na POChP w Polsce: stan obecny i pożądany kierunek zmian. Perspektywa specjalistów pulmonologów. Pneum Pol. 2022; 3(1–2): 23–32.
  14. Szymański D. Polacy o lekarzach — raport badawczy 2015. https://www.getdbe.com/knowledgebase/polacy-o-lekarzach-raport-badawczy-2015-czesc-i-ogolna-opinia-o-lekarzach/ (28.03.2024).
  15. Raport: Health at a Glance 2015. OECD Indicators. https://doi.org/10.1787/health_glance-2015-en (28.03.2024).
  16. Brożek B, Damps-Konstańska I, Pierzchała W, et al. End-of-life care for patients with advanced lung cancer and chronic obstructive pulmonary disease: survey among Polish pulmonologists. Pol Arch Intern Med. 2019; 129(4): 242–252.
  17. Fletcher C. Listening and talking to patients. III: the exposition. Br Med J. 1980; 281(6246): 994–996.
  18. Sofianidi A, Karadimou A, Charpidou A, et al. The gap of health inequalities amongst lung cancer patients of different socioeconomic status: a brief reference to the Greek reality. Cancers (Basel). 2024; 16(5): 906.
  19. Gupta A, Omeogu CH, Islam JY, et al. Association of area-level socioeconomic status and non-small cell lung cancer stage by race/ethnicity and health care-level factors: Analysis of the National Cancer Database. Cancer. 2022; 128(16): 3099–3108.
  20. Van der Heyden JHA, Schaap MM, Kunst AE, et al. Socioeconomic inequalities in lung cancer mortality in 16 European populations. Lung Cancer. 2009; 63(3): 322–330.
  21. Williams RM, Beck KH, Butler J, et al. Lung cancer screening decisional needs among African American smokers of lower socioeconomic status. Ethn Health. 2022; 27(3): 565–583.
  22. Rajala K, Lehto JT, Saarinen M, et al. End-of-life care of patients with idiopathic pulmonary fibrosis. BMC Palliat Care. 2016; 15(1): 85.
  23. Lindell KO, Liang Z, Hoffman LA, et al. Palliative care and location of death in decedents with idiopathic pulmonary fibrosis. Chest. 2015; 147(2): 423–429.