Idiopathic pulmonary fibrosis (IPF) is a chronic, irreversible, fibrosing pulmonary disease with a poor prognosis. Life expectancy without treatment is ∼3–5 years from the time of diagnosis.1 IPF has a profound impact on patients’ health related quality of life (HRQL).2 Holistic management of patients with IPF is considered essential, in addition to any disease-modifying treatment. We conducted this study aiming to describe the psychological profile of IPF patients, further extending our previous findings in this group of patients.3 Selected questionnaires were used to assess key outcomes: anxiety, depression, demoralization, spirituality, dignity, social support and HRQL perception. It all intended to improve the wellbeing of IPF patients and their families.
In a cross-sectional study design, we investigated IPF patients of the ILD Unit of the Hospital Universitario de la Princesa in Madrid enrolled from 1st May 2017 to 30th November 2017. Inclusion criteria were: diagnosis of IPF according to the 2011 ATS/ERS/JRS/ALAT guidelines.4 Exclusion criteria were: cognitive impairment (comprehension/expression problems), refusal to participate, and clinical instability. The study protocol was designed according to the STROBE criteria,5 and it was approved by our Clinical Research Ethics Committee (Register Number 3775). After collecting informed consent, a psychologist with more than ten years of clinical experience interviewed patients and administered the different psychological evaluation instruments as per the protocol.
The questionnaires used were:
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Survival scheme. Based on the taxonomy of Moorey and Greer.6 This scheme is a model of patient functioning that emerged in psycho-oncology, and describes the ability to adapt, the emotional response, and the coping styles that cancer patients use to knowing their diagnosis or their disease status. Through these questions, the patient's vision of the diagnosis (What threat represents the disease?), the type of control that the patient considers exercising over the disease (What can be done in front of it? Can it be controlled?) and also the vision of the prognosis that the patient has (What is the probable prognosis of the disease and how reliable is it?) are explored. The application of the survival scheme was carried out using the same questions as in cancer.
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Hospital Anxiety and Depression Scale (HADS). This instrument was designed for the detection of affective disorders in non-psychiatric hospital settings.7
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HRQL. Only two items of the Global Health Subscale of EORTC-QLQ-C308 were used, namely: “How would you rate your overall health status during the past week?” and “How would you rate your overall quality of life during the past week?”. It was used following previous research findings and guidelines in similar contexts.9,10
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CED-PAL.10 Brief instrument for the measurement of dignity in palliative care patients. It consists of two factors: preservation of dignity and threat of dignity.
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Questionnaire GES.11 It consists on eight items that evaluate spirituality as a general factor with three dimensions: intrapersonal, interpersonal and transpersonal.
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Brief Scale of Demoralization.12 Scale that assesses the demoralization syndrome.
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Brief Scale of Resilient Coping.13 This scale of four items focuses on the tendency to effectively use coping strategies in flexible, committed ways to actively solve problems despite stressful circumstances.
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Duke-UNC.14 Questionnaire of quantitative evaluation of perceived social support in relation to two aspects: people to whom intimate feelings can be communicated and persons expressing positive feelings of empathy.
Of the 121 IPF patients seen during the study period in the ILD Unit, 56 (46.3%) agreed to participate in the study. 31 were men (55%) and 25 were women (45%), with a mean+SD age of 63.5+9.5 years. Regarding the 65 patients who did not participate during the evaluation period, they were 40 men (61%) and 25 women (38%), with a mean+SD age of 68.5+8.55 years. There were no differences in between participants and non-participants on sex (p=.400), but participants were younger (p=.019). Participants were married or with a partner (80%), they had varying levels of studies, and they were mostly retired (68%). All IPF patients knew their diagnosis (name of the disease and description), but only 73% knew about the prognosis of IPF. Time since IPF diagnosis was longer than 1 year in more than half of patients. Regarding management of the disease, 93.9% of patients had antifibrotic treatment, 76.8% had home oxygen therapy, but only 21% had received psychological follow-up with the psychologist of the ILD Unit before the clinical visit (Table 1).
Clinical and main emotional aspects experienced by patients with IPF.
n | % | |
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Known diagnosis | ||
Yes | 56 | 100.0 |
No | 0 | 0.0 |
Known prognosis | ||
Yes | 41 | 73.2 |
No | 15 | 26.8 |
Time since diagnosis | ||
<3 months | 4 | 7.1 |
3 months and <6 months | 8 | 14.3 |
6 months and <12 months | 9 | 16.1 |
12 months and < 24 months | 14 | 25 |
24 months or longer | 21 | 37.5 |
Type of treatment | ||
Antifibrotic | 52 | 93.9 |
Palliative (with or without antifibrotic) | 4 | 6.1 |
Home oxygen therapy | ||
Yes | 43 | 76.8 |
No | 13 | 23.2 |
Previous psychological treatment | ||
Yes | 12 | 21.4 |
No | 44 | 78.6 |
n | % | |
---|---|---|
Main feelings or fears | ||
Loss of autonomy | 26 | 46.4 |
Weight loss/physical alterations | 1 | 1.8 |
Control of symptoms | 2 | 3.6 |
Fear of transplant | 9 | 16.1 |
Concern for third parties | 6 | 10.7 |
Disadaptive denial of diagnosis | 4 | 7.1 |
Disadaptive negation of prognosis | 4 | 7.1 |
Others | 4 | 7.1 |
Activities of daily living (ADL) | ||
Less than two ADL | 9 | 16.1 |
Moderate | 11 | 19.6 |
Enough | 12 | 21.4 |
Adequate | 24 | 42.9 |
Social and leisure activities | ||
Only with family | 14 | 25.0 |
Friends | 16 | 28.6 |
Activities with some groups | 12 | 21.4 |
Normal | 14 | 25.0 |
Familiar communication | ||
Silence Pact | 4 | 7.1 |
Claudication | 6 | 10.7 |
Difficulties of understanding | 4 | 7.1 |
Overflow | 10 | 17.9 |
Avoidance | 31 | 55.4 |
Normal | 1 | 1.8 |
Needs of family | ||
Not specific | 6 | 10.7 |
Emotional Support | 31 | 55.4 |
Problem resolution | 8 | 14.3 |
Information related to the disease | 9 | 16.1 |
Not applicable | 2 | 3.6 |
Moorey & Greer survival scheme | n | % |
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Diagnostic processing | ||
Challenge | 19 |