Physical, emotional, and practical symptom burden in patients with terminal illnesses
The May 2024 issue of Annals of Palliative Medicine featured 4 Original Articles, 14 Review Articles, 1 Editorial, 3 Editorial Commentary Articles, and 1 Expert Consensus. One of the Original Articles focusing on symptom burden in terminally ill patients by Fordjour and colleagues from The University of Hong Kong (1) will be featured in this Message From the Editor-in-Chief.
Patients with end-stage disease in the final months of their lives often experience a high symptom burden (2,3). Beyond their suffering from physical symptoms, terminal illnesses can often affect physiological, psychosocial and spiritual wellness of patients and their families (4). Furthermore, it has been well described that terminally ill patients often die with unmet needs (5,6), underscoring the importance of characterizing these needs in order to be able to better address them.
End of life care can best be optimized by understanding the scope of symptom burden that patients face with end-stage diseases. As this symptom burden differs for different terminal conditions—from cancer to heart disease to neurological or kidney or pulmonary diseases, for example—it is critical to understand the symptoms and overall holistic effects that each diseases places on patients. Such an understanding can effectively be performed through quantified symptom assessment scores, including through the use of patient-reported outcome measurements (7). The Integrated Palliative care Outcome Scale (IPOS) is a widely used and validated patient-reported tool consisting of 17 items (10 measuring physical symptoms, 4 measuring emotional symptoms, and 3 measuring communication/practical issues) rated on a 5-point Likert scale. The IPOS tool can provide for a comprehensive assessment of the factors contributing to various categories of symptom burdens in terminally ill patients, and it provides a total IPOS score, as well as subscale scores for physical symptoms, emotional symptoms, and communication and practical issues (8).
While such assessments with IPOS often have been conducted in patients with end-stage malignancies and heart failure, little quantitative data exist for other terminal diseases. Therefore, Fordjour and colleagues (1) attempted to significantly add to the understanding of symptom burden in other terminal conditions by administering IPOS to a diversity of patients with terminal illnesses to provide a comprehensive analysis of the perceived symptom burden intensity across patients with a variety of end-stage diseases and to assess the influence that patient demographics and clinical factors have on their perceived symptom burden intensity. Specifically, Fordjour et al. (1) asked “what are the major distressing symptoms reported by the overall terminally ill patients, cancer and non-cancer patients … are there differences in perceived symptom burden intensity across diverse patient disease groups … and what are the demographics and clinical factors influencing the perceived intensity of symptom burden in terms of the IPOS total and subscale scores among terminally-ill patients?”.
They assessed patients with a prognosis of less than 12 months treated within their End of Life Care service model in Hong Kong between January 2016 and December 2021 using the IPOS tool evaluation at baseline, one month after service and 3 months after service. Among 1,998 patients who consented to participate in the study, 354 could not complete the baseline questionnaire and 95 had incomplete or missing data, leaving a cohort of 1,549 terminally ill patients assessed. Approximately half of those patients were 80 years of age or older (48.7%), and the cohort had a slight male predominance (53.1%). Patients most commonly had cancer (53.4%), end-stage renal disease (19.2%), chronic obstructive pulmonary disease (8.3%), motor neuron disease (4.3%), Parkinson’s disease (3.5%), heart failure (3.4%), or dementia (2.7%).
The most distressing symptom reported by the overall cohort was poor mobility, followed in order by perceived family anxiety, inability to share feelings, weakness/lack of energy, and hardly feeling at peace. Notably, all 4 of the emotional symptom questions and all 3 of the communication/practical issue questions from the IPOS tool were ranked among the 11 most distressing symptoms, whereas only 4 of the 10 physical symptom questions (poor mobility #1, weakness/lack of energy #4, drowsiness #6, and pain #10) were in the top 11 most distressing symptoms.
Fordjour and colleagues (1) identified some important differences across terminal conditions, with non-cancer patients being more likely to rank poor mobility as the most distressing symptom. In fact, perceived family anxiety was the most distressing symptom among cancer patients, whereas it was ranked third among non-cancer patients behind poor mobility and sharing feelings. Significant differences across disease types were also seen among perceived physical symptom burden intensity questions, most notably for shortness of breath, drowsiness, and constipation. Similarly, there were significant differences across disease types for all four emotional symptom questions, but there were no significant differences in perceived burden intensity for communication/practical issue questions across disease types.
Notable additional differences across disease types and patient characteristics were further identified. The main type of illness significantly predicted the IPOS total and subscale symptom burden intensity, with non-cancer patients perceiving higher burden of IPOS physical symptoms, emotional symptoms, and communication/practical issues. Furthermore, older patients across diseases perceived great physical symptoms, emotional symptoms, and communication/practical issue challenges. Additionally, the investigators also found that female patients perceived a higher emotional symptom burden, whereas married or cohabiting patients reported higher physical symptom and emotional symptom burden, and whereas patients who lived alone perceived higher communication/practical issue burden.
Fordjour and colleagues should be commended for such a large analysis of prospectively collected patient reported outcome measures that has significantly added to the previously limited literature on symptom burden intensity in terminally ill patients. In addition to the findings of the overall cohort, this work is particularly impactful in revealing significant differences in the perceived symptom burden intensity for all 10 IPOS physical symptoms across the 8 disease groups of terminally ill patients assessed. This study is also impactful in demonstrating the importance of psychosocial well-being of end-stage patients, with both cancer and non-cancer patients ranking psychosocial symptoms as more distressing than physical symptoms. Mostly notable, important differences in symptom burden were identified across disease types and patient characteristics, including age and sex.
The findings in this analysis highlight the importance of recognizing and understanding the specific symptoms that are experienced by different patient groups and different disease groups, which can help to personalize care and more optimally address symptoms most distressing to individual patients. The findings also highlight the importance of prioritizing psychosocial support to reducing the overall symptom burden of terminally ill patients. Finally, this study identified groups at higher risk of suffering from a greater symptom burden, including older patients, female patients, married or cohabitating patients, and patients who live alone, thus providing healthcare providers with information from which they can prioritize resources for these patient populations.
Acknowledgments
Funding: None.
Footnote
Provenance and Peer Review: This article was commissioned by the editorial office, Annals of Palliative Medicine. The article did not undergo external peer review.
Conflicts of Interest: The author has completed the ICMJE uniform disclosure form (available at https://apm.amegroups.com/article/view/10.21037/apm-24-103/coif). The author serves as the co-Editor-in-Chief of Annals of Palliative Medicine from April 2014 to April 2027. The author has no other conflicts of interest to declare.
Ethical Statement: The author is accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.
Open Access Statement: This is an Open Access article distributed in accordance with the Creative Commons Attribution-NonCommercial-NoDerivs 4.0 International License (CC BY-NC-ND 4.0), which permits the non-commercial replication and distribution of the article with the strict proviso that no changes or edits are made and the original work is properly cited (including links to both the formal publication through the relevant DOI and the license). See: https://creativecommons.org/licenses/by-nc-nd/4.0/.
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