Awareness of diagnosis, treatment and risk of late effects in Chinese survivors of childhood cancer in Hong Kong. (8th June 2021)

• Record Type: Journal Article
• Authors: Yang, Lok Sum; Ma, Chung Tin; Chan, Chun Him; Luk, Mei Shum; Woo, Hoi Kei; Lee, Vivian Wai‐yan; Leung, Alex Wing Kwan; Lee, Samantha Lai‐ka; Yeung, Nelson Chun‐yiu; Li, Chi‐kong; Cheung, Yin Ting
• Is Part Of: Health expectations. Volume 24:Number 4(2021)
• Page Start: 1473
• Page End: 1486
• Publication Date: 2021-06-08
• Subjects: childhood cancer -- education -- health literacy -- late effects -- survivorship; Medical policy -- Periodicals; Public health -- Periodicals; Health planning -- Periodicals; 362.105
• DOI: 10.1111/hex.13288
• Languages: English
• ISSNs: 1369-6513

Abstract

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.