What was the research about?
Patients with advanced lung cancer have important choices to make about chemotherapy. Chemotherapy is a treatment that uses medicines to stop the growth of cancer cells. The side effects of medicines used in chemotherapy differ. Some medicines may be hard for patients to tolerate for long periods of time. Patients’ treatment preferences can change over time.
The research team talked to patients before, during, and after chemotherapy to see whether they changed their views on
- What treatment results they prefer: longer life, improved well-being, or a mix of both
- How long they would be willing to tolerate specific side effects
- Which side effects they would most like to avoid
The research team looked at data from all patients who had more than one interview. They reported how patients changed their answers from their first to their last interview.
What were the results?
After having chemotherapy, 47 percent of patients changed their preferences about treatment results. Of patients who first said that treatment success was longer life, 80 percent changed their definition of success to include improved well-being.
The number of patients willing to put up with chemotherapy side effects for years, rather than months, decreased after treatment. Among all patients, 36 percent decreased how long they would put up with side effects from “years” to “months” compared with 24 percent of patients who increased how long they would put up with side effects from “months” to “years”.
Before treatment, patients ranked shortness of breath, bleeding, and fatigue as the side effects they would most like to avoid. After treatment, more ranked fatigue as the side effect to avoid, followed by shortness of breath and bleeding.
Who was in the study?
This study included 235 patients with lung cancer receiving care from nine cancer centers in Nebraska, North Dakota, Kansas, and Florida. Of these, 95 percent were white, and 5 percent were other races. The average age was 68, and 55 percent were men.
What did the research team do?
The research team interviewed patients before, during, and after chemotherapy. They asked patients what treatment results they prefer: longer life, improved well-being, or a mix of both. In addition, they asked patients how long they would be willing to put up with treatment side effects. Finally, patients ranked a list of chemotherapy side effects to see which ones they would most like to avoid. The research team looked at whether patient responses were different before and after treatment.
Patients, family members, patient advocates, and cancer doctors and nurses helped design the study.
What were the limits of the study?
Most patients in this study were white and over age 60. The results may be different for patients of other backgrounds.
How can people use the results?
This study found that patients often change treatment preferences after starting chemotherapy. Doctors may want to ask patients about what matters most to them both before and after starting treatment.
To determine how patients with advanced-stage non-small-cell lung cancer (NSCLC) undergoing chemotherapy change their definitions of treatment success, the length of time they are willing to tolerate side effects, and which side effects they most want to avoid
|Design||Observational: cohort study|
|Population||235 patients with advanced-stage NSCLC and eligible for chemotherapy from 9 cancer centers across the United States|
Change in patient-defined treatment success, change in length of patients’ willingness to tolerate side effects after treatment, change in rank-ordering of side effects that patients want to avoid most
|Timeframe||Up to 13 months for study outcomes|
In this observational cohort study, researchers investigated how, after beginning chemotherapy, patients with advanced-stage NSCLC change their preferences about treatment outcomes and side effects.
Researchers interviewed 235 patients with advanced-stage NSCLC up to three times: before, during, and after chemotherapy. Patients received care from one of nine cancer centers in Nebraska, North Dakota, Kansas, and Florida. Of these, 95% were white, and 5% were other races. The average age was 68, and 55% were male.
At each interview, researchers asked patients if their treatment goal was longer life, preserving quality of life, or longer life while preserving quality of life. Patients also indicated the length of time that they were willing to tolerate side effects from chemotherapy and ranked a list of treatment side effects to indicate those that they would most like to avoid. For the 168 patients who completed all three interviews, researchers evaluated how patients changed their answers from their first interview to their last.
A group of patients, family members, patient advocates, and clinicians helped design the study and select study outcomes.
During or after treatment, 47% of patients changed their definition of treatment success. Of those patients who first defined treatment success as longer life, 80% changed their definition to preserving quality of life or longer life while preserving quality of life.
Patients’ willingness to tolerate chemotherapy side effects for years decreased from 43% before treatment to 36% during or after treatment. Among all patients, 36% changed their willingness to tolerate side effects from years to months compared with 24% who changed from months to years.
Before treatment, patients ranked shortness of breath (29%), bleeding (21%), and fatigue (12%) as the side effect they would most like to avoid. During or after treatment, more individuals (26%) chose fatigue. Shortness of breath and bleeding dropped to 21% and 14%, respectively.
Most participants in this study were white and over age 60. The findings may not be generalizable to other populations.
Conclusions and Relevance
This study showed that patients’ preferences for their treatment goals may change during or after chemotherapy to focus less on survival and more on quality of life. The findings emphasize the need for patient-provider communication and reexamination of patients’ treatment preferences and goals throughout treatment.
Future Research Needs
Future research could examine when and how best to reexamine patients’ treatment preferences and goals, convey the information to providers, and incorporate it into clinical care.
Final Research Report
View this project's final research report.
Related Journal Citations
Peer review of PCORI-funded research helps make sure the report presents complete, balanced, and useful information about the research. It also assesses how the project addressed PCORI’s Methodology Standards. During peer review, experts read a draft report of the research and provide comments about the report. These experts may include a scientist focused on the research topic, a specialist in research methods, a patient or caregiver, and a healthcare professional. These reviewers cannot have conflicts of interest with the study.
The peer reviewers point out where the draft report may need revision. For example, they may suggest ways to improve descriptions of the conduct of the study or to clarify the connection between results and conclusions. Sometimes, awardees revise their draft reports twice or more to address all of the reviewers’ comments.
Peer reviewers commented and the researchers made changes or provided responses. Those comments and responses included the following:
- Reviewers requested extensive edits because of difficulties understanding the language in the report and insufficient detail of the methods used. The researchers made several efforts to correct language and restructure the report to make it more readable.
- Reviewers identified a number of standard reporting elements for clinical trials, including eligibility criteria, allocation concealment, and detailed intervention information, that the report did not describe adequately. The researchers expanded their presentation of the study methods. However, the reviewers were not completely satisfied with the researchers’ responsiveness to their concerns.
- Reviewers questioned the choice to complete more than 200 qualitative interviews, then create categorical variables from those qualitative data, as part of the methods for Aim 1. The researchers explained that the interviews had quantitative and qualitative components, and the qualitative questions were actually limited to the patients defining their understanding of treatment success.
Conflict of Interest Disclosures
Study Registration Information
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