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Living with the Late Effects of Childhood Cancer Treatment: A Descriptive Qualitative Study.

ABSTRACT: Long-term childhood cancer survivors (CCS) may experience physical, social, and emotional struggles posttreatment. Our aim was to explore the experiences of CCS dealing with the late effects of cancer treatment from their own perspectives. This study employed a qualitative descriptive design to explore and describe the experience of dealing with late effects among CCS. Semi-structured interviews were conducted with 15 CCS in Korea. Participants were selected by purposive and snowball sampling and individually interviewed during the period from September to November 2020. Conventional content analysis was used to analyze data and identify themes. Two main themes and seven subthemes emerged. The two main themes were: "Things I encountered while crossing a bridge" and "Living as a survivor". The participants reported both positive and negative experiences with dealing with the late effects of cancer treatment. The main themes indicated that late effects exert significant impacts on the lives of CCS in both positive and negative ways. Healthcare providers and researchers should pay attention to early intervention needs of CCS and their support systems to strengthen their positive experiences in dealing with late effects during their survivorships.

SUBMITTER: Hong HC

PROVIDER: S-EPMC8393717 | biostudies-literature | 2021 Aug

REPOSITORIES: biostudies-literature

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Living with the Late Effects of Childhood Cancer Treatment: A Descriptive Qualitative Study.

Hong Hye Chong HC Min Ari A Choi Sungkyoung S

International journal of environmental research and public health 20210808 16

Long-term childhood cancer survivors (CCS) may experience physical, social, and emotional struggles posttreatment. Our aim was to explore the experiences of CCS dealing with the late effects of cancer treatment from their own perspectives. This study employed a qualitative descriptive design to explore and describe the experience of dealing with late effects among CCS. Semi-structured interviews were conducted with 15 CCS in Korea. Participants were selected by purposive and snowball sampling an ...[more]

PMID: 34444141

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Project description:BackgroundHigh-dose methotrexate (HD-MTX) is used in the treatment of different childhood cancers, including leukemia, the most common cancer type and is commonly defined as an intravenous dose of at least 1 g/m2 body surface area per application. A systematic review on late effects on different organs due to HD-MTX is lacking.MethodWe conducted a systematic literature search in PubMed, including studies published in English or German between 1985 and 2020. The population of each study had to consist of at least 75% childhood cancer survivors (CCSs) who had completed the cancer treatment at least twelve months before late effects were assessed and who had received HD-MTX. The literature search was not restricted to specific cancer diagnosis or organ systems at risk for late effects. We excluded case reports, case series, commentaries, editorial letters, poster abstracts, narrative reviews and studies only reporting prevalence of late effects. We followed PRISMA guidelines, assessed the quality of the eligible studies according to GRADE criteria and registered the protocol on PROSPERO (ID: CRD42020212262).ResultsWe included 15 out of 1731 identified studies. Most studies included CCSs diagnosed with acute lymphoblastic leukemia (n = 12). The included studies investigated late effects of HD-MTX on central nervous system (n = 10), renal (n = 2) and bone health (n = 3). Nine studies showed adverse outcomes in neuropsychological testing in exposed compared to non-exposed CCSs, healthy controls or reference values. No study revealed lower bone density or worse renal function in exposed CCSs. As a limitation, the overall quality of the studies per organ system was low to very low, mainly due to selection bias, missing adjustment for important confounders and low precision.ConclusionsCCSs treated with HD-MTX might benefit from neuropsychological testing, to intervene early in case of abnormal results. Methodological shortcomings and heterogeneity of the tests used made it impossible to determine the most appropriate test. Based on the few studies on renal function and bone health, regular screening for dysfunction seems not to be justified. Only screening for neurocognitive late effects is warranted in CCSs treated with HD-MTX.

Project description:BackgroundHeart failure is a serious chronic medical condition that negatively impacts daily living. Living with heart failure can be challenging due to the physical symptoms, unpredictable nature of the disease, and lifestyle changes required. The objective of this study was to explore and describe the experiences of people living with heart failure and how it affects their health-related quality of life in Ethiopia.MethodsA qualitative descriptive design was employed to explore the experience of people living with heart failure, guided by the Theory of Symptom Management. A purposive sample of 14 participants was recruited from the cardiac outpatient clinics at two tertiary-level public hospitals in Ethiopia. Data were collected using a semi-structured interview. The recorded interviews were transcribed verbatim in Amharic, translated into English, and entered NVivo statistical software for analysis. An inductive-deductive hybrid thematic analysis method was used to analyse the data.ResultsThree themes were identified deductively, while an additional three themes emerged inductively:-"Journey from diagnosis to daily life with heart failure"; "Symptom experience"; "Impact of heart failure on health-related quality of life"; "Perception of health-related quality of life and influencing factors"; "Symptom management and coping strategies"; and "Challenges faced in the journey of living with heart failure". Fatigue, and depression were the most frequently reported symptoms. Participants described how their condition affected their overall physical functioning. Participants utilized consistent follow up-care, adhered to their medications, ensured adequate rest, made dietary modifications, sought social support and engaged in spiritual activities to manage their symptoms and cope with their condition. Challenges they faced included financial difficulties, unavailability of medications, and a lack of continuity of care.ConclusionPeople living with heart failure in Ethiopia experience various symptoms. The impact of heart failure on various aspects of their lives, combined with the challenges they face while living with heart failure, significantly affect their health-related quality of life. Health care providers caring for these people need to understand their experiences and the impact on their daily life. Effective multimodal interventions are needed to reduce the impact of heart failure and improve health-related quality of life in this population.

Project description:BackgroundThis is a long-term follow-up clinical study of adolescents and adults, survivors of childhood cancer. We evaluate and analyze the late somatic sequelae of childhood cancer treatment. Many such studies are susceptible to a strong selection bias, i.e., they employ a limited non-systematic sample of patients, based on a clinical hospital that provided the cancer treatment or performed the follow-up. To address the issue of selection bias, we perform here an analysis of late sequelae on a systematic database of the entire population of the children treated for cancer in Slovenia. Due to the specifics of cancer treatment procedures in Slovenia, they have all been treated and followed-up in the same clinic.MethodsThe data are based on the centralized registry of cancer patients in Slovenia and present a controlled and homogeneous collection. Late sequelae are evaluated following a modified CTCAE, i.e., the National Cancer Institute's Common Terminology Criteria for Adverse Events version 3.0. We use survival analysis method to estimate the incidence of and risk for late sequelae, where the time variable is measured in years from the diagnosis date, while we follow the event of incidence of late sequelae scored other than none. Survival analysis is performed using Kaplan Meier estimator and Cox regression model.ResultsThe incidence of mild, moderate, or severe late sequelae of childhood cancer treatment significantly decreased from 75% in the group of patients diagnosed before 1975 to 55% for those diagnosed after 1995. The Cox regression analysis of the risk factors for the incidence of late sequelae identifies three significant factors: treatment modalities, age at diagnosis, and primary diagnosis.ConclusionsThe change of treatment modalities in terms of replacement of surgery and radiotherapy with chemotherapy is the main reason for the decrease of the incidence and the risk for late sequelae of childhood cancer treatment; treatment modalities including surgery significantly increase the risk ratio of late sequelae, while those based on chemotherapy only significantly decreases the risk. Risk of late sequelae increases with the diagnosis age: younger children are more susceptible to late effects of treatment. Finally, primary diagnosis significantly influences the risk for late sequelae, but mostly due to the dependency of the treatment modality on the primary diagnosis.

Dataset Information

Living with the Late Effects of Childhood Cancer Treatment: A Descriptive Qualitative Study.

Publications

Living with the Late Effects of Childhood Cancer Treatment: A Descriptive Qualitative Study.

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