This study aims to delve into the constructs of illness beliefs and expectations among patients with Pulmonary Fibrosis, exploring how these beliefs and expectations may influence the treatment journey, including oxygen therapy, non-invasive ventilation therapy, and pharmacological treatments.
Study Type
OBSERVATIONAL
Enrollment
130
The questionnaires will be completed at the time of enrollment (T0), and at the 6- and 12-month follow-ups.
Fondazione IRCCS Ca' Granda Ospedale Maggiore Policlinico di Milano
Milan, Italy
Don Gnocchi Foundation
Milan, Italy
Adherence to Pharmacological Treatment
Types of medications taken (Pirfenidone/Nintedanib/Other); assessed as the ratio between the received daily dose (RDD) and the prescribed daily dose (PDD); also evaluated using the Medication Adherence Report Scale (MARS-5), a 5-item questionnaire.
Time frame: from October 2023 to October 2025
Adherence to Oxygen Therapy
Use of oxygen and respective quantities (liters/minute at rest and during exertion).
Time frame: from October 2023 to October 2025
Adherence to Non invasive ventilation
Use of Non-Invasive Ventilation (nighttime/daytime or both; prescribed and actual hours of usage).
Time frame: from October 2023 to October 2025
Illness beliefs
Assessed using the Brief Illness Perception Questionnaire (B-IPQ), a nine-question scale designed to rapidly assess cognitive and emotional representations of the illness. Assessed using the Brief Illness Perception Questionnaire (B-IPQ), a nine-question scale designed to rapidly assess cognitive and emotional representations of the illness.
Time frame: from October 2023 to October 2025
Pharmacological treatment Beliefs
Assessed using the Beliefs about Medicines Questionnaire (BMQ), a tool designed to evaluate individuals' beliefs about medications. It has been validated for use in patients with chronic illnesses and has been shown to predict treatment adherence in other groups, such as individuals with asthma.
Time frame: from October 2023 to October 2025
Illness Expectations
Specific questions formulated to assess explicit illness expectations in Pulmonary Fibrosis are proposed.
Time frame: from October 2023 to October 2025
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Illness Cognitions
Illness Cognition Questionnaire (ICQ), a questionnaire assessing three ways of cognitively evaluating the stressful and adverse nature of a chronic illness: helplessness, acceptance, and perceived benefits.
Time frame: from October 2023 to October 2025
Socio-demographic variables
Gender, age, smoking status, and number of cigarettes smoked per day. Additionally, factors such as family history of respiratory diseases, alcohol use (frequency), physical activity (frequency and type), level of education, marital status, onset of initial symptoms, and date of diagnosis will be considered.
Time frame: from October 2023 to October 2025
Clinical and medical data
Weight and height (for calculation of Body Mass Index, BMI); comorbidities (diabetes, hypertension, hypercholesterolemia, presence of other conditions), perceived symptoms (e.g., dyspnea, cough, chest pain, fatigue and weakness, muscle and joint pains, weight loss...). Additionally, parameters from respiratory function tests (particularly Forced Vital Capacity (FVC) and Diffusing Capacity of the Lungs for Carbon Monoxide (DLCO), arterial blood gas analysis) will be recorded. These data will be extracted from the latest available medical report and therefore from the last pulmonary visit conducted as part of routine clinical practice (please note that medical visits paid for by this project are not included).
Time frame: from October 2023 to October 2025