Patients with COPD Report Unmet Psychosocial and Existential Needs

Credit: Adobe Stock/Dragana Gordic

A patient-reported outcome measure for general palliative care (PRO-Pall) revealed common physical symptoms among patients with chronic obstructive pulmonary disease (COPD), such as fatigue and breathlessness, as well as psychosocial and existential issues that are often overlooked in clinical settings.

Palliative care is a method used to prevent and alleviate suffering among patients while enhancing quality of life by identifying and treating issues related to physical, psychological, social and existential factors. Although previous studies have shown the benefits of this care among patients with COPD, access to care is limited and barriers to timely care remain due to misconceptions about palliative care, the patient’s own lack of understanding of their condition and the unpredictable nature of disease trajectory.

“Individualized assessment is crucial for identifying patients’ needs, and patient-reported outcome measures (PROMs) offer a method to directly capture patients’ issues, instead of relying solely on the healthcare professionals’ assessment, which can result in under-detection,” wrote a group of Danish investigators led by Cecilie Lindström Egholm, PhD, associated with REHPA, the Danish Knowledge Centre for Rehabilitation and Palliative Care, at Odense University Hospital in Denmark.

The study used the 24-item PRO-Pall to assess a range of issues among 115 adult patients with COPD in a Danish outpatient clinic. Electronic health records were used to collected sociodemographic and illness-related information.

Results highlighted common physical symptoms like shortness of breath (52.2%), fatigue (52.2%) and difficulty walking (39.1%), while concerns about changes in social roles emerged as the top psychosocial issue. Almost half (44.5%) of patients said they felt they were able to share their feelings with their friends or family and 62.2% said their illness-related issues were addressed in a satisfactory manner.

Additionally, 14.4% of patients reported existential struggles, defined as a “distinct painful psychological state that results from a stressor that challenges fundamental expectations about security, interrelatedness with others, justness, controllability, certainty and hope for a long and fruitful life.”

Women reported needing more rest, which investigators theorize could be due to a higher prevalence of cardiovascular disease, sleep apnea and asthma. Men noted intimacy challenges, which could be related to issues with erectile dysfunction, which is common among male patients with COPD.

A lower rating of the quality-of-life question of the PRO-Pall was linked to a higher COPD-impact on life, as assessed by the COPD Assessment Test (CAT), and was independent of age, gender, smoking status and lung function. Because of this, investigators believe PRO-Pall could potentially be substituted for the CAT, as it predominantly focuses on physical issues of disease impact.

Overall, the study suggests that PRO-Pall may be a valuable tool for a more comprehensive understanding of COPD patients' multifaceted needs.

Despite the thorough assessment of patient-reported outcomes within a real-world hospital setting, investigators noted limitations including their extra efforts in providing patients with the opportunity to complete the assessment, which may not be feasible in clinical settings with patients exhibiting lower literacy levels or technical or emotional barriers. Additionally, generalizability may be limited as the study focused on patients who were relatively ill.

“PROMs can facilitate discussions and support the identification of patients’ issues and needs for timely palliative care initiation,” investigators wrote. “However, we found that 14.8% of participants reported problems not included in the close-ended PRO-Pall items, acknowledging that no instrument can fully capture all issues that may require palliative care among patients with COPD (or any other disease). This finding underscores that PROMs should support patient–provider conversations and assessment of palliative care needs; they should not stand alone.”