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

Ji, Xu; Shen, Jun; Liu, Xinyu; Mao, Ziling; Zhang, Wenjing; Zhang, Jinhe; Sun, Xiaojie; Han, Xuesong

doi:10.1002/cam4.4831

Cited by 4 publications

(1 citation statement)

References 63 publications

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“…China, as a developing nation, grapples with a substantial pediatric cancer burden, too. World Health Organization data reveals that nearly 120,000 children in China were diagnosed with cancer between 2015 and 2020, comprising 14% of global juvenile cancer incidences ( Ji et al, 2022 ).…”

Section: Introductionmentioning

confidence: 99%

Psychometric evaluation of the Chinese version of the resilience scale for parents of children with cancer

Zhong,

Ding,

et al. 2024

Front. Psychol.

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BackgroundPediatric cancer ranks among the leading causes of mortality in children globally. While serving as primary caregivers, certain parents may experience anxiety, depression, and other related challenges. However, not all parents succumb to such psychological distress. Resilience emerges as a potential protective factor. Assessing parental resilience holds paramount importance for healthcare professionals in identifying issues and offering tailored interventions. Yet, mainland China lacks adequate tools for this assessment. Hence, this study endeavors to translate the Resilience Scale for Parents of Children with Cancer (RSP-CC) into Chinese and scrutinize its psychometric properties.MethodsFrom April 2023 to January 2024, a methodological study was conducted in Chengdu, Chongqing, and Jinzhou, China, recruiting 377 eligible parents via convenience sampling for a multicenter cross-sectional survey. The translation process of the RSP-CC adhered rigorously to the Brislin model, involving forward and back-translation, followed by necessary modifications. Item analysis was assessed using the critical ratio and the item-total correlation coefficient. Validity evaluation encompassed content and internal validity assessments. Scale reliability was determined through Cronbach’s α coefficient, retest reliability, and split-half reliability coefficients.ResultsThe Chinese version of the RSP-CC comprises 4 dimensions and 24 items, explaining a cumulative variance contribution of 63.58%. In this investigation, the content validity index attained a score of 0.97. Exploratory factor analysis (EFA) yielded four factors consistent with the original scale, while confirmatory factor analysis (CFA) indicated satisfactory fit indices. Both Cronbach’s α coefficient and retest reliability stood at 0.95, with a split-half reliability coefficient of 0.82.ConclusionAfter rigorous translation and verification, the RSP-CC was adapted in China, demonstrating favorable psychometric characteristics. It stands as an effective instrument for parents of children diagnosed with cancer in China. Additionally, this scale could serve as a crucial tool for clinical staff in formulating specific interventions.

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Section: Introductionmentioning

confidence: 99%

Psychometric evaluation of the Chinese version of the resilience scale for parents of children with cancer

Zhong,

Ding,

et al. 2024

Front. Psychol.

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Accessibility of and Barriers to Long-Term Follow-Up Care for Childhood Cancer Survivors

Cai,

Malone,

Bhakta

et al. 2024

JAMA Netw Open

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ImportanceChildhood cancer survivorship programs and long-term follow-up (LTFU) practices are inadequate in most regions of China.ObjectiveTo understand the clinician and caregiver perceptions of LTFU care and to identify barriers to adherence to LTFU care in mainland China.Design, Setting, and ParticipantsThis survey study had a 2-phase sequential mixed-methods approach, consisting of a cross-sectional survey followed by semistructured interviews. Participants included oncology clinicians recruited through an educational seminar on LTFU and caregivers recruited through convenience sampling. Data were collected from November 2022 to September 2023.Main Outcomes and MeasuresThe clinician survey and interview focused on the standards and resources for LTFU care at their practicing institution and barriers to the coordination of LTFU care. For caregivers, the survey and interview focused on their awareness of and participation in LTFU care and their opinions on future LTFU care visits.ResultsA total of 101 clinicians (28 [27.7%] male; 73 [72.3%] female; 46 [45.6%] aged &gt;40 to 50 years) completed the survey (response rate: 90.2%) representing 32 institutions from 22 provinces. As for the caregivers’ survey, 164 eligible participants (36 [22.0%] male; 128 [78.0%] female) were recruited (response rate: 20.2%). The majority of the caregivers had received a high school or greater education (96 [56.7%]) and were parents of CCSs diagnosed with leukemia (67 [40.9%]), lymphoma or solid tumors (47 [28.7%]), or conditions requiring hematopoietic stem cell transplantation (50 [30.5%]). Most clinicians (74 [73.3%]) reported providing late effects care, yet only 10 (13.5%) had a dedicated follow-up clinic for CCSs. Two-thirds (64 [63.4%]) reported that the LTFU plan for each survivor is solely determined by their clinical judgment. In structured interviews, all doctors admitted to deviating from published guidelines due to challenges in implementing screening recommendations in their settings. Barriers to providing LTFU services included patient-related factors (76 [75.2%]), survivor knowledge deficits (61 [60.4%]), and the absence of dedicated LTFU clinics (61 [60.4%]). Among caregivers responding to the survey, 60 (36.6%) had never heard of late effects. Overall, 22 of 26 caregivers (84.6%) who participated in the interviews were not aware of potential late effects, although 17 (68.0%) could articulate existing conditions and symptoms that their children were experiencing.ConclusionsIn this mixed-methods study involving clinicians and caregivers, substantial disparities in the uniformity and accessibility of LTFU in China were observed, suggesting the imperative need for a standardized approach to LTFU care for survivors. This includes advocating for establishment of dedicated clinics, alongside an emphasis on enhanced education and training for both clinicians and caregivers.

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

Shen

Liu

et al. 2022

Cancer Medicine

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Across countries in the world, China has the largest population of childhood cancer survivors. Research and care for the childhood cancer survivor population in China is fragmented. We searched studies published in English or Chinese language between January 1, 2000 and June 30, 2021, which examined various aspects of childhood cancer survivorship in China. The existing China‐focused studies were largely based on a single institution, convenient samplings with relatively small sample sizes, restricted geographic areas, cross‐sectional design, and focused on young survivors in their childhood or adolescence. These studies primarily focused on the physical late effects of cancer and its treatment, as well as the inferior psychological wellbeing among childhood cancer survivors, with few studies examining financial hardship, health promotion, and disease prevention, or healthcare delivery in survivorship. Our findings highlight the urgent need for research and evidence‐based survivorship care to serve the childhood cancer survivor population in China.

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

Cited by 4 publications

References 63 publications

Psychometric evaluation of the Chinese version of the resilience scale for parents of children with cancer

Psychometric evaluation of the Chinese version of the resilience scale for parents of children with cancer

Accessibility of and Barriers to Long-Term Follow-Up Care for Childhood Cancer Survivors

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

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