Chronic respiratory insufficiency affects patients with diverse underlying diseases with varying progression and prognosis. Chronic respiratory insufficiency can derive from diffusion impairment or hypoventilation and is treated with long-term oxygen therapy or noninvasive ventilation. Many patients have advanced respiratory disease, with severe symptoms and impaired functional capacity affecting their everyday lives. It is important to recognize the total symptom burden and factors associated with poor survival to be able to provide comprehensive treatment and to make well-timed end-of-life plans for patients with chronic respiratory insufficiency.
The aim of the thesis was to describe the symptom burden in patients with chronic respiratory insufficiency and the symptoms associated with depression and dyspnoea upon exercise. The factors associated with survival and end-of-life characteristics were studied in patients with chronic respiratory insufficiency and the need for long-term oxygen therapy (LTOT) or noninvasive ventilation (NIV).
This retrospective study was based on the evaluation of medical records and death certificates. All the patients who visited the respiratory insufficiency clinic of Tampere University Hospital from 1.10.2016 to 31.10.2017 with completed Edmonton Symptom Assessment System (ESAS) questionnaires (n = 226) and modified Medical Research Council dyspnoea scale (mMRC) questionnaires (n = 101) were studied for symptom prevalence and severity. In the studies concerning survival and end-of-life characteristics, all patients with newly initiated devices for respiratory support (LTOT n = 195 or NIV n = 205) from 1.1.2012 to 31.12.2015 were included and followed up until 31.12.2017 or death.
The most common diseases causing the need for LTOT were chronic obstructive pulmonary disease (COPD) and interstitial lung diseases (ILDs) and the most frequent reasons for the need for NIV were COPD and obesity hypoventilation syndrome (OHS). Patients with chronic respiratory insufficiency suffered from many symptoms, of which dyspnoea, dry mouth, tiredness and pain upon movement were the most common. Depressive symptoms and severe dyspnoea upon exercise (mMRC score of 4) were associated with higher scores in all the ESAS categories compared with no depressive symptoms and milder dyspnoea, respectively. The depression scores on the ESAS questionnaire correlated well with the scores on the Depression Scale (DEPS) questionnaire.
Altogether, 68.2% and 43.9% of the patients on LTOT and NIV died during the follow-up, respectively. The overall survival varied greatly among patients as a consequence of the heterogeneous underlying diseases, being shortest in patients with ILD and the need for LTOT (0.9 years). The survival of patients needing help in activities of daily living was shorter than that of those who were independent. Most of the deceased patients had a decision not to be resuscitated, but only a few had end-of-life care decisions, including ruling out intensive care and invasive ventilation. Nevertheless, these patients mostly died in the hospital and not at home.
In conclusion, patients with chronic respiratory insufficiency suffer from many severe and heterogeneous symptoms. Systematic symptom screening should be implemented in patients who are treated in respiratory insufficiency clinics. The timing of end-of-life decisions and advance care planning is difficult because of the heterogeneous underlying diseases and varying disease progression.
However, even though many patients with chronic respiratory insufficiency have advanced disease with poor survival, end-of-life care decisions were made for only a few patients, as most of the patients died in the hospital. The discussion of end-of-life care, paying attention to patients’ own wishes, should be part of the treatment plan of patients with chronic respiratory insufficiency at the time of initiation of LTOT or NIV unless lung transplantation is not an option. This is especially true in patients with interstitial lung disease as opposed to patients with COPD as the disease progression is more variable.
The doctoral dissertation of M.D. Heidi Rantala in the field of medicine titled Symptoms and Survival in Patients with Chronic Respiratory Insufficiency will be publicly examined at the Faculty of Medicine and Health Technology of Tampere University at 12 o'clock on Friday 25 March, 2022. The venue is Arvo building auditorium F115, address: Arvo Ylpön katu 34. Professor Tarja Saaresranta from University of Turku will be the opponent while Professor Lauri Lehtimäki will act as the custos.
The event can be followed via remote connection
The dissertation is available online at
Photo: Mikko Rantala