Long-term care for people treated for cancer during childhood and adolescence

Tonorezos, Emily S.; Cohn, Richard J.; Glaser, Adam; Lewin, Jeremy; Poon, Eileen; Wakefield, Claire E.; Oeffinger, Kevin C.

doi:10.1016/s0140-6736(22)00460-3

Cited by 46 publications

(38 citation statements)

References 66 publications

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“…Much of this progress has resulted in increased survival rather than increased cures [ 8 ]. Survivors of cancer are at risk for a range of late-occurring side effects from treatment, which would also change the fate of these patients [ 9 ]. In older persons with a haematological cancer, increased survival after a cancer diagnosis may result in more deaths from age-related diseases such as cardio-vascular disease (CVD), stroke and diabetes.…”

Section: Introductionmentioning

confidence: 99%

Changing causes of death in persons with haematological cancers 1975–2016

Chen

Zheng

et al. 2022

Leukemia

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Causes of death in persons with haematological cancers include the index cancer, a new cancer or a seemingly unrelated cause such as cardio-vascular disease. These causes are complex and sometimes confounded. We analyzed trends in cause of death in 683,333 persons with an index haematological cancer diagnosed in 1975–2016 reported in the Surveillance, Epidemiology and End Results dataset. Non-cancer deaths were described using standardized mortality ratios. The index cancer was the predominant cause of death amongst persons with plasma cell myeloma, acute lymphoblastic leukaemia and acute myeloid leukaemia. Non-cancer death was the major cause of death in persons with chronic lymphocytic leukaemia, Hodgkin lymphoma and chronic myeloid leukaemia, mostly from cardio-vascular diseases. The greatest relative decrease in index-cancer deaths was amongst persons with Hodgkin lymphoma, chronic myeloid leukaemia and chronic lymphocytic leukaemia, where the proportion of non-cancer deaths increased substantially. Changing distribution of causes of death across haematological cancers reflects substantial progress in some cancers and suggests strategies to improve the survival of persons with haematological cancers in the future.

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Section: Introductionmentioning

confidence: 99%

Changing causes of death in persons with haematological cancers 1975–2016

Chen

Zheng

et al. 2022

Leukemia

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“…As genetic and genomic testing are routinized following pediatric and AYA cancer diagnoses, 37,38 young people and their families will increasingly live with the chronicity and uncertainty of hereditary cancer syndromes. Current models of survivorship care do not address the psychosocial features of hereditary cancer syndromes, let alone AYA‐specific needs 14,39,40 . Specialty collaborative medical and psychosocial teams with expertise in hereditary cancer syndromes will be increasingly important to address uncertainty regarding anticipated disease, intervals between serial primary diagnoses, and the capacity of the body to tolerate ongoing treatments 17,20,36 .…”

Section: Discussionmentioning

confidence: 99%

How do young people with a hereditary cancer predisposition syndrome understand and experience cancer survivorship? “With Li‐Fraumeni syndrome, it’s just an intermission”

et al. 2023

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Objectives Adolescents and young adult (AYA) cancer survivors face unique medical and psychosocial sequalae, including chronic health conditions, late effects of treatment and fear of recurrence. The meaning of cancer survivorship may be further complicated for AYAs with hereditary cancer predisposition syndromes. This study used a patient‐centered framework to investigate how AYAs with Li‐Fraumeni syndrome (LFS) consider cancer survivorship. Methods An interprofessional team conducted 30 semi‐structured interviews with AYAs (aged 18–41, mean 31 years) enrolled in the National Cancer Institute's LFS Study (NCT01443468). Twenty had experienced at least one cancer diagnosis. Interview data were thematically analyzed by an inter‐professional team using interpretive description and grounded theory methods. Findings Participants viewed “survivorship” as a period marked by no evidence of formerly diagnosed disease. By contrast, participants felt the label “survivor” was tenuous since LFS is characterized by multiple primary malignancies and uncertainty about intervals between one diagnosis and the next. Many AYAs viewed survivorship as requiring a high degree of suffering. Though many personally rejected “survivor” identities, almost all articulated its various functions including positive, negative, and more complicated connotations. Instead, they chose language to represent a range of beliefs about survival, longevity, prognosis, and activism. Conclusions AYAs with LFS struggle with the term “survivor” due to their multi‐organ cancer risk, short intervals between malignancies, and evolving identities. Loved ones' cancer‐related suffering informed perspectives on survivorship. Survivorship care for AYAs with cancer risk syndromes requires interprofessional interventions that address their unique biomedical and psychosocial needs.

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“…The eligibility criteria are as follows: (1) having a child diagnosed with cancer; (2) the child with cancer is 7–17 years; (3) the child is undergoing cancer treatment, such as radiation and chemotherapy, and has not yet entered the phase of long-term survival 19 ; (4) the child and their primary caregiver can read and speak Mandarin Chinese and can complete a basic cognitive skills test and (5) the child and their caregiver are willing to participate in the study. The exclusion criteria are as follows: (1) the child’s cancer is a relapsed or end-stage cancer; (2) the child is unable to complete the interview; (3) the child is currently participating in or has been involved in other similar intervention studies and (4) the child has other serious health problems, such as thyroid disease, asthma or hypertension.…”

Section: Methods and Analysismentioning

confidence: 99%

Efficacy of a smartphone-based care support programme in improving post-traumatic stress in families with childhood cancer: protocol of a randomised controlled trial

Qian

Peng

et al. 2022

BMJ Open

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IntroductionDiagnosis and treatment represent distressing experiences for the families of children with cancer. Psychosocial challenges are faced by these families in China because of limited health services and resources for psychosocial oncology care. Effective interventions tailored to the knowledge level and cultural values of this population are needed. The goal of this study is to evaluate a smartphone-based care support (SBCS) programme for the families of children with cancer in China.Methods and analysisA parallel randomised controlled trial will be conducted to examine the efficacy of an evidence-based and culturally tailored SBCS programme for the families of children with cancer in China. A total of 180 families will be recruited. The intervention will consist of an introduction session and four main sessions and will be conducted sequentially on a single weekend day. Participating families will be included in the intervention group. The post-traumatic stress and quality of life of families will be evaluated at baseline, during the intervention, immediately after the intervention, and 2 and 6 months after the intervention.Ethics and disseminationEthical approval for this protocol has been obtained from the Nursing and Behavioural Medicine Research Ethics Review Committee, Xiangya School of Nursing, Central South University (Protocol #: E2020125). The findings of the trial will be disseminated through conference presentations and publications in peer-reviewed journals.Trial registration numberChiCTR2000040510.

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Long-term care for people treated for cancer during childhood and adolescence

Cited by 46 publications

References 66 publications

Changing causes of death in persons with haematological cancers 1975–2016

Changing causes of death in persons with haematological cancers 1975–2016

How do young people with a hereditary cancer predisposition syndrome understand and experience cancer survivorship? “With Li‐Fraumeni syndrome, it’s just an intermission”

Efficacy of a smartphone-based care support programme in improving post-traumatic stress in families with childhood cancer: protocol of a randomised controlled trial

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