Awareness of diagnosis, treatment and risk of late effects in Chinese survivors of childhood cancer in Hong Kong

Abstract

Background For survivors of childhood cancer, awareness of personal health risks is a critical component of long‐term health management. Objective To evaluate the awareness of the diagnosis, treatment and risk of late effects among survivors of childhood cancer in Hong Kong. Methods Between June 2019 and March 2020, this cross‐sectional study recruited 155 adult survivors (mean age = 26.9, standard deviation [SD] = 6.4 years) and 45 parents of paediatric survivors (mean age = 11.1, SD = 3.6 years) from a long‐term follow‐up clinic. At >10 years post‐treatment (mean = 13.4, SD = 7.6 years), they completed a structured questionnaire to report their cancer‐specific knowledge. Multiple linear regression analysis was conducted to identify clinical, socioeconomic and behavioural factors associated with poor awareness. Results The majority of participants accurately recalled their diagnoses (73.5%) and major treatment modalities (chemotherapy 92.4%, radiation 82.9% and surgery 88.2%). However, less than half (45%) of the participants recognized more than 25% of the total late effects for which they were at risk. The highest levels of awareness were reported for endocrine problems (49%), neurocognitive impairment (44%) and secondary cancers (43%), and the lowest for peripheral neuropathy (21%) and vision problems (23%). Compared with survivors of haematological malignancies, those of central nervous system (CNS) tumours (standardized estimate [B] = −9.33, 95% confidence interval [95% CI]: −13.41 to −5.26) and non‐CNS solid tumours (B = −8.47, 95% CI: −12.39 to −4.94) had less knowledge about their diagnosis. Retaining medical records (P < .0001) and better medical information‐seeking habits (P = .048) were associated with better awareness. Conclusions Survivors of childhood cancer in Hong Kong have deficient awareness of their personal health risks. They may benefit from the provision of a survivorship care plan and personalized education regarding treatment‐related late effects. Patient Contribution Patients contributed in designing the study tools. Results were presented at a non‐governmental organization.

Integrating Complementary Medicine Into the Care of Childhood Cancer Survivors: A Brief Report on the Preliminary Framework and Implementation of an Educational Program

“…A set of educational materials was developed to provide information on CM theories and advice on CM use during the post-treatment phase. The materials was integrated as a part of the survivorship care plan, which currently contains personalized information on survivors' cancer diagnosis and treatment history, as well as late effects and health promotion advice adapted from the Children Oncology Group ( 20 , 21 ). The key information was focused on CM dietary therapies, herbal products, and non-oral approaches such as traditional exercises, and were developed based on clinical consensus and existing recommendations in the literature ( 9 , 10 ).…”

Provision of a personalized survivorship care plan and its impact on cancer‐related health literacy among childhood cancer survivors in Hong Kong

“…The primary outcome was pre‐intervention to postintervention change in the participants’ cancer‐specific health literacy. The approach used to assess cancer‐specific health literacy was adapted from landmark studies 15–17 ; the details and a sample of the assessment tool were reported in our previous study 13 . Briefly, the approach assesses survivors’ knowledge of their cancer diagnosis and risk‐based, exposure‐related LEs.…”

“…They also review such information periodically with long‐term survivors when they visit the long‐term follow‐up (LTFU) clinic yearly. However, we previously reported that these survivors demonstrated deficient knowledge of treatment‐related LEs, with less than half (45%) of the surveyed survivors or caregivers recognizing more than 25% of the total LEs for which they were at risk 13 . The provision of personalized education and an SCP as part of a comprehensive survivorship program for this special population may improve their awareness of personal health risks.…”

Childhood cancer survivorship in China: An overview of the past two decades

“…We used domains derived from the Cancer Survivorship Care Quality Framework 12 as a guide to search and select literature (detailed in Appendix S1 , S2 ) and synthesize findings from Chinese childhood cancer survivor populations. Below we presented highlights from studies published between January 1, 2000 and June 30, 2021 in English 17 , 18 , 19 , 20 , 21 , 22 , 23 , 24 , 25 , 26 , 27 , 28 , 29 , 30 , 31 , 32 , 33 , 34 , 35 , 36 , 37 , 38 , 39 , 40 , 41 , 42 or Chinese language 43 , 44 , 45 , 46 , 47 , 48 , 49 , 50 , 51 , 52 , 53 , 54 , 55 , 56 , 57 , 58 , 59 (Table 1 , Appendix S3 ) to shed light on the gaps in previous literature and opportunities for future research.…”

“…This study also found that chronic conditions developed after the cancer treatments were associated with multiple measures of behavior problems, such as executive dysfunction and attention problems. 26 Although long‐term and late effects of cancer treatment are common among childhood cancer survivors, another study in Hong Kong found that, among 200 survivors at least 10 years post‐treatment, most were not able to accurately identify the late effects that they were at risk for, 27 suggesting that improvements in health literacy of late effects are warranted among childhood cancer survivors.…”