Abstract
Objectives: Treatment burden is the workload of health care and the impact this has on the individual. Treatment burden is associated with poorer patient outcomes in several chronic diseases. Illness burden has been extensively studied in cancer, but little is known about treatment burden, particularly in those who have completed primary treatment for cancer. The aim of this study was to investigate treatment burden in survivors of prostate and colorectal cancer and their caregivers.
Design: Semi-structured interview study. Interviews were analysed using Framework and thematic analysis.
Setting: Participants were recruited via general practices in Northeast Scotland
Participants: Eligible participants were individuals who had been diagnosed with colorectal or prostate cancer without distant metastases within the previous five years and their caregivers. Thirty-five patients and 6 caregivers participated: 22 patients had prostate and 13 had colorectal cancers (6, male, 7 female).
Results: The term “burden” did not resonate with most survivors, who expressed gratitude that time invested in cancer care could translate into improved survival. Cancer management was time consuming, but workload reduced over time. Cancer was usually considered as a discrete episode. Individual-, disease-, and health system- factors protected against or increased treatment burden. Some factors, such as health service configuration were potentially modifiable. Multimorbidity contributed most to treatment burden and influenced treatment decisions and engagement with follow up. The presence of a caregiver protected against treatment burden, but caregivers also experienced burden.
Conclusions: Intensive cancer treatment and follow-up regimes do not necessarily lead to perceived burden. A cancer diagnosis serves as a strong motivator to engage in health management, but a careful balance exists between positive perceptions and burden. Treatment burden could lead to poorer cancer outcomes by influencing engagement with and decisions about care.Clinicians should ask about treatment burden and its impact, particularly in those with multimorbidity.
Trial Registration: NCT04163068; clinicaltrials.gov
Strengths and Limitations
• In-depth interviews with 41 individuals, generating rich qualitative data
• Participant feedback on the results and key messages
• The study was conducted in a single geographical area
• Participants from areas of higher social deprivation were relatively under-represented
Design: Semi-structured interview study. Interviews were analysed using Framework and thematic analysis.
Setting: Participants were recruited via general practices in Northeast Scotland
Participants: Eligible participants were individuals who had been diagnosed with colorectal or prostate cancer without distant metastases within the previous five years and their caregivers. Thirty-five patients and 6 caregivers participated: 22 patients had prostate and 13 had colorectal cancers (6, male, 7 female).
Results: The term “burden” did not resonate with most survivors, who expressed gratitude that time invested in cancer care could translate into improved survival. Cancer management was time consuming, but workload reduced over time. Cancer was usually considered as a discrete episode. Individual-, disease-, and health system- factors protected against or increased treatment burden. Some factors, such as health service configuration were potentially modifiable. Multimorbidity contributed most to treatment burden and influenced treatment decisions and engagement with follow up. The presence of a caregiver protected against treatment burden, but caregivers also experienced burden.
Conclusions: Intensive cancer treatment and follow-up regimes do not necessarily lead to perceived burden. A cancer diagnosis serves as a strong motivator to engage in health management, but a careful balance exists between positive perceptions and burden. Treatment burden could lead to poorer cancer outcomes by influencing engagement with and decisions about care.Clinicians should ask about treatment burden and its impact, particularly in those with multimorbidity.
Trial Registration: NCT04163068; clinicaltrials.gov
Strengths and Limitations
• In-depth interviews with 41 individuals, generating rich qualitative data
• Participant feedback on the results and key messages
• The study was conducted in a single geographical area
• Participants from areas of higher social deprivation were relatively under-represented
| Original language | English |
|---|---|
| Article number | e068997 |
| Number of pages | 14 |
| Journal | BMJ Open |
| Volume | 13 |
| Issue number | 3 |
| Early online date | 1 Mar 2023 |
| DOIs | |
| Publication status | Published - 1 Mar 2023 |
Bibliographical note
AcknowledgmentsThe authors thank the participants who volunteered their time to give detailed accounts of their experiences. We also thank the National Health Service Research Scotland Primary Care Network, who facilitated patient recruitment via general practices. We thank the general practices who participated.
Funding This work was funded by a Scottish Government Chief Scientist Office Senior Clinical Academic Fellowship awarded to RA (reference: SCAF/18/02).
Data Availability Statement
Data availability statementNo data are available. Participants of this study did not agree for their interview transcripts to be shared publicly, so supporting data are not available.
UN SDGs
This output contributes to the following UN Sustainable Development Goals (SDGs)
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SDG 3 Good Health and Well-being
Keywords
- adult oncology
- Qualitative research
- quality in health care
- gastrointestinal tumours
- urological tumours
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