| Literature DB >> 34744429 |
Sara Tomassetti1,2, Alfredo Sebastiani3, Antonella Caminati4, Tiberio Oggionni5, Michele Davì6, Alessandra Ghirardini6, Monica M Martinoli7.
Abstract
BACKGROUND: Idiopathic pulmonary fibrosis (IPF) remains a debilitating, poor prognosis disease requiring a patient-centered approach.Entities:
Keywords: Communication; Idiopathic pulmonary fibrosis; Patient-centeredness; Questionnaire; Role play; Semi-structured interviews; Training
Year: 2021 PMID: 34744429 PMCID: PMC8552572 DOI: 10.36141/svdld.v38i3.11400
Source DB: PubMed Journal: Sarcoidosis Vasc Diffuse Lung Dis ISSN: 1124-0490 Impact factor: 0.670
Figure 1.Results of the 8-question self-assessment survey completed by pulmonologists before the start of the first workshop (pre; N=23) and after the end of second one (post; N=11).
Overall results of the RP sessions taking place before (pre, N=22) and after (post, N=12) the workshop, during which a pneumologist had to replace a colleague and communicate the diagnosis of IPF to a patient simulated by an actress. Each video-recorded consultation was analyzed by two psychologists, who scored in an ad-hoc 20-item grid whether the diagnosis of IPF had been fully communicated, along with the use of the communication interventions reported in the table to define whether the approach adopted was more oriented towards patient-centered medicine or disease-centered medicine. For each item, the number (%) of specialists employing it during the simulation is reported.
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| 19 (86.4) | 11 (91.7) |
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| 10 (45.5) | 3 (25.0) |
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| 20 (90.9) | 10 (83.3) |
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| 2 (9.1) | 8 (66.7) |
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| 12 (54.5) |
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Results of the semi-structured interviews (N=15) conducted by the psychologist team at the end of the 8 days of on-site clinical consultations. After listening to the transcription of the interviews, the psychologists organized the key concepts into themes and subthemes.
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Breaking bad news and emotional burden ( Ensuring deep understanding of disease severity and treatment features by patients, and of their impact on the subject’s lifestyle
- Patients’ cultural level (frequently low) - Poor (general) knowledge of the disease: when the patient finds out that IPF is not a cancer, he/she is relieved Communicating the lack of an effective therapy to cure IPF, which, conversely, is important to prevent or delay progression
- Lifelong - Adverse events may impair QoL and limit daily activities The presence of caregivers
- Their presence may hamper communication during the consultation; conversely, engaging caregivers may facilitate patient commitment and adherence |
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Making the patient fully understand the importance of therapy, which requires both mental and physical commitment
- Lack of full comprehension of patient’s needs and expectations by the pulmonologist - Lack of an established therapeutic alliance - Young patient’s age - Asymptomatic or paucisymptomatic patients |
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Accounting for both clinical parameters, psychological status and social life (therapy is not for everyone and must be tailored on the candidate’s features) Accounting for the changes and AEs caused by therapy, which may affect QoL (e.g. photosensitivity) Accounting for the patients’ preferences |
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Adherence is not such a big deal, unlike for other chronic diseases, if the patient has clearly understood the severity of IPF - Regular monthly visits - Regular drug pick-up - Importance of therapy - Cost of therapy - Awareness of disease severity - An effective physician-patient relationship Understanding when patients lie Interpreting patients’ complaints and if they really depend on IPF therapy |
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