Patients and family caregivers report high treatment expectations during palliative chemotherapy: a longitudinal prospective study

Our plain-English summary of Patients and family caregivers report high treatment expectations during palliative chemotherapy: a longitudinal prospective study, by T. Ikander, S.S. Jeppesen, O. Hansen, et al (BMC Palliative Care, 2021).

The study

• Authors: T. Ikander, S.S. Jeppesen, O. Hansen, M. Raunkiær, K.B. Dieperink
• Journal: BMC Palliative Care
• Published: 2021;20(1):37
• Cited by: 14 articles, as counted by NIH iCite
• Read it: PubMed · Publisher · Free full text

Abstract

Background: When discussing treatment options and future care, it is important to understand the expectations of patients and family caregivers related to palliative chemotherapy and to identify patterns in patients' quality of life. The study aims were to evaluate differences in treatment expectations and quality of life between patients with thoracic cancer (non-small-cell lung cancer, small-cell lung cancer and mesothelioma) who were < 70 and ≥ 70 years of age and receiving palliative chemotherapy and to assess family caregivers' treatment expectations.

Methods: A prospective longitudinal study included patients with thoracic cancer receiving outpatient palliative chemotherapy at a university hospital in Denmark and their family caregivers. Patients' treatment expectations and quality of life were assessed three times during treatment with a survey of treatment expectations and the Functional Assessment of Cancer Therapy - General questionnaire. Family caregivers' treatment expectations were assessed once.

Results: A total of 48 patients and 36 family caregivers participated between 2018 and 2019. No statistically significant age-related differences in treatment expectations and quality of life were identified. 28% of patients aged < 70 years and 7% of those aged ≥70 years expected a cure. Among family caregivers, 36% expected a cure. Across both age groups, mean total quality of life scores significantly decreased from 73.2 at first palliative chemotherapy cycle to 70.5 at third cycle (p = 0.02). No meaningful changes were found in quality of life within either age group. A subgroup analysis found no significant between-group differences in quality of life. Mean physical well-being score for all patients decreased from 20.3 at first cycle to 18.4 at third cycle (p = 0.03) and mean emotional well-being score decreased from 15.4 at first cycle to 14.6 at third cycle (p = 0.04).

Conclusion: This study emphasizes the importance of initiating conversations about treatment expectations and paying attention to expectations that may differ by the age of the patient and between patients and family caregivers. Addressing treatment expectations among patients and family caregivers and monitoring quality of life among patients is important in clinical practice.

In plain English

This prospective longitudinal study followed 48 patients with thoracic cancer (non-small-cell lung cancer, small-cell lung cancer or mesothelioma) who were receiving outpatient palliative chemotherapy at Odense University Hospital in Denmark between 2018 and 2019. It also included 36 of their family caregivers. The study did not examine asbestos exposure. Patients answered questions about what they expected from treatment, and completed a quality-of-life questionnaire (FACT-G), at the first, second and third chemotherapy cycles. Caregivers answered once. No statistically significant differences in expectations or quality of life were found between patients under 70 and those 70 or older. At the first cycle, 28% of younger patients and 7% of older patients expected a cure, but this difference was not statistically significant. Thirteen of 36 caregivers (36%) expected a cure. Across all patients, the average total quality-of-life score fell from 73.2 to 70.5 (p = 0.02), a drop the authors judged not clinically meaningful. The authors concluded that discussing treatment expectations and monitoring quality of life are important in clinical practice. They noted the small number of participants as a limitation.

We wrote this plain-English summary from the full article with the help of AI, and a second AI model checked each sentence against the article. It is not the authors' wording; the abstract and the article are their own account.

What the study did and found

• Design: Prospective longitudinal questionnaire study
• Who was studied: 48 of 58 invited patients with thoracic cancer (31 non-small-cell lung cancer, 8 small-cell lung cancer, 9 mesothelioma; 30 aged under 70 and 18 aged 70 or older) and 36 family caregivers, from the outpatient oncology clinic at Odense University Hospital, Denmark, March 2018 to February 2019
• Exposure: First- to fifth-line palliative chemotherapy, given as single drugs or combinations (including vinorelbine and topotecan among others). Asbestos exposure was not studied.
• Main results:
  • No statistically significant age-related differences in treatment expectations or quality of life were found between patients under 70 and those 70 or older.
  • At the first cycle, 28% (8 of 29) of patients under 70 and 7% (1 of 15) of patients 70 or older expected a cure. The difference was not statistically significant (p = 0.1).
  • Among the 36 family caregivers, 13 (36%) expected a cure, 25 (69%) expected prolongation of life, and 15 (42%) expected reduced pain and discomfort.
  • Patient and caregiver expectations agreed 79.17% of the time for cure (Cohen's kappa 0.42), 66.67% for reduced pain and discomfort (kappa 0.20), and 58.33% for prolongation of life (kappa 0.15).
  • For all patients combined, the mean total quality-of-life score fell from 73.2 at the first cycle to 70.5 at the third cycle (p = 0.02). The authors stated this decrease was not clinically meaningful.
  • For all patients, the mean physical well-being score fell from 20.3 to 18.4 (p = 0.03) and the mean emotional well-being score fell from 15.4 to 14.6 (p = 0.04).
  • Among patients under 70, the mean physical well-being score fell by 2.1 points, which the authors described as clinically meaningful but not statistically significant.
• The authors' conclusion: The authors concluded that addressing treatment expectations among patients and family caregivers, and monitoring patients' quality of life, is important in clinical practice. They added that attention should be paid to differences in expectations by age and between patients and caregivers.
• Limitations the authors state:
  • Relatively few patients and family caregivers were included, despite an 11-month inclusion period.
  • Second and third chemotherapy cycles were postponed for 13 and 8 patients respectively, and six patients died during the study period.
  • The 3-week interval between quality-of-life questionnaires may account for the lack of significant between-group findings.
  • No validated tool exists for assessing treatment expectations; the authors used a single question they developed and pilot tested.

Topics

The National Library of Medicine indexes this study under subjects our site covers: Lung cancer.

Medical terms in this study, explained in our Lexicon: Palliative Care, Chemotherapy, Quality of Life, Lung Cancer, Mesothelioma.

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