Is the high intensity symptoms experienced by patients admitted with chronic obstructive pulmonary disease documented by health professionals? - a prospective survey with comparison of patient reported outcomes and medical records

Abstract

Context: Patients with chronic obstructive pulmonary disease (COPD) have a high symptom burden and reduced quality of life. There is an increasing attention on palliation for patients with COPD. Recognition of symptoms is a prerequisite for palliation. Objectives: We aim to investigate the extent to which symptoms in patients with COPD are recognized in the documentation of the health professionals, indicated in ‘Doctors Symptom Recognition Rate’ (DSR), ‘Nurses Symptom Recognition Rate’ (NSR) or ‘Doctors and/or Nurses Symptom Recognition rates ’(DNSR) as a team, respectively. Methods: Patients with COPD (n = 40) admitted in two respiratory units, responded within 48 h on two symptom-screening-tools that access quality of life; COPD assessment test (CAT) used for the treatment of COPD and EORTC-QLQ-C15-PAL used for palliation in patients with cancer. Patient-described symptomatology was compared to the symptoms as recognized in the documentation of doctors and/or nurses. Results: There was a significant discrepancy between the symptomatology indicated by patients with COPD on CAT and EORTC-QLQ-C15-PAL, and the degree by which it was recognized in the medical records indicated in DSR or NSR. In 30 out of 44 items DSR or NSR were < 70%. There was a significant difference between DNSR versus DSR or NSR, respectively, in 19 out of 22 items. Conclusion: A team-based symptom recognition DNSR is superior when compared to DSR or NSR.Team-based systematic screening is suggested as a pathway to increase symptom recognition in patients with COPD. Increased rates of symptom recognition may improve symptom alleviation and thus palliation.

Impact of applying palliative care on symptoms and survival of patients with advanced chronic disease admitted to the emergency department

“…[ 28 ] Underreporting of symptoms in patients with chronic diseases is frequent. [ 29 ] In the present study, it was observed as the main finding that dyspnea and pain decrease with the use of palliative care.…”

Danish translation and linguistic validation of the multidimensional dyspnea profile

“…The MDP was developed to measure dyspnea across diseases. The source language MDP was tested for reliability and validity in a mixed population (n = 151) with cardiac or respiratory disease presented at an emergency department with respiratory distress [ 26 ]. In this study patients with coronary syndromes or malignant neoplasms of the head, neck, thorax or abdomen were excluded [ 28 ].…”

“…Currently, there is an increased awareness of palliative care needs in non-malignant diseases such as: COPD and heart failure. The clinician’s ability to treat or alleviate the intensity of the symptom dyspnea warrants the identification of the symptom, understanding the burden, trajectories, and measurement of the symptom [ 26 , 40 , 41 ]. It is shown that burdensome dyspnea defined as intensity ≥4 in a 0–10 point scale with 10 anchored at ‘unbearable’ was present in 43% of patients admitted with respiratory diagnosis and in 25% of patients admitted with cardiovascular diagnosis [ 11 ].…”

“…All tools contribute with useful information, especially with respect to outpatient clinic patients, but none of them have been developed or validated for experimentally induced dyspnea or dyspnea in acute settings [ 25 ]. Their semantic structure generates a risk of that dyspnea being underreported due to lack of dimensions, low sensitivity and specificity in the most severe and frail patients with the potential risk that multiple aspects of the symptom will be unnoticed and untreated [ 26 , 27 ].…”

The role of palliative care in lung transplantation

“…Symptom burdens and other needs are typically assessed using validated instruments such as the Edmonton Symptom and Assessment Scale for physical symptoms and the Patient Health Questionnaire for psychological symptoms. Use of validated instruments is important because symptoms and support needs are likely to be underappreciated if not assessed systemically (4,(18)(19)(20)(21)(22)(23)(24)(25)(26). Identification of symptoms and sources of distress enables interventions to mitigate symptoms, enable better coping, alleviate distress, and assist with decision making.…”