Communicating “cure” to pediatric oncology patients: A mixed‐methods study

Abstract

Background Uncertainty about cure puts childhood cancer survivors at risk of mental distress. We asked survivors if they had been told they had been cured and investigated associated factors. Procedure We used nationwide registry data and a questionnaire survey for ≥five‐year survivors of childhood cancer (n = 301), followed by online focus groups with a purposive sample of Swiss pediatric oncologists (n = 17). Discussions were coded by investigators using thematic analysis. Results Overall, 235 among 301 survivors (78%; 95% confidence interval, 73%–83%) reported having been told they were cured. The proportion was 89% (81%–97%) among lymphoma and 84% (77%–91%) among leukemia survivors, but only 49% (33%–65%) among central nervous system tumor survivors. Pediatric oncologists acknowledged that telling survivors they are cured may reassure them that their cancer lies behind them. However, many refrained from telling all patients. Reasons included the possibility of late effects (cure disrupted by a continued need for follow‐up care) or late relapse (uncertainty of biological cure), case‐by‐case strategies (use of “cure” according to individual factors), and reluctance (substitution of noncommittal terms for “cure”; waiting for the patient to raise the topic). Conclusions Not all physicians tell survivors they have been cured; their choices depend on the cancer type and risk of late effects.

Current practices of follow-up programs for childhood cancer survivors in Italy

“…In Italian, the word "cured" means a biological remission of the disease but also refers to a word with an important psychological impact on the daily life of CCS: it may reassure patients that cancer has been left behind. 26 Although the COVID pandemic had a negative impact on the healthcare system, we observed an improvement in survivorship care within our country thanks to international collaborations and the work done in the last decade. This study underlines the actions that remain to be implemented to improve programs for LEs.…”

“…In Italian, the word “cured” means a biological remission of the disease but also refers to a word with an important psychological impact on the daily life of CCS: it may reassure patients that cancer has been left behind. 26…”

“I don’t take for granted that I am doing well today”: a mixed methods study on well-being, impact of cancer, and supportive needs in long-term childhood cancer survivors

“…Our study has limitations, including a small sample size and a response rate of 48%. However, the response rate is common for this study population [61][62][63][64]. Additionally, our sample was not population-based and survivors contacted through Childhood Cancer Switzerland may be more engaged and better informed than other survivors [61].…”

Is Oligometastatic Cancer Curable? A Survey of Oncologist Perspectives, Decision Making, and Communication

“…These findings corroborate data from prior studies, which demonstrate that oncologists hesitate to use words like “cure” or “curative” when counseling patients. 20 , 21 , 22 This avoidance likely stems from these words’ emotional significance and concerns about giving unrealistic hope to patients and loved ones. 20 , 21 , 22 , 23 , 24 However, most prior studies on oncologist communications have focused on patients with advanced metastatic disease in which treatment was given with palliative intent.…”

“… 20 , 21 , 22 This avoidance likely stems from these words’ emotional significance and concerns about giving unrealistic hope to patients and loved ones. 20 , 21 , 22 , 23 , 24 However, most prior studies on oncologist communications have focused on patients with advanced metastatic disease in which treatment was given with palliative intent. 20 , 24 Our study expands on this known reluctance of oncologists to use the word “cure” by finding that they may not use these words to discuss disease prognosis even when they believe cure is possible—suggesting that the OMD paradigm might have shifted how oncologists treat metastatic cancer but not how they counsel patients about prognosis.…”