The Adult Life After Childhood Cancer in Scandinavia (ALiCCS) Study: Design and Characteristics

Asdahl, Peter H.; Winther, Jeanette Falck; Bonnesen, Trine Majken Gade; Licht, Sofie de Fine; Guðmundsdóttir, Þorgerður; Anderson, Harald; Madanat‐Harjuoja, Laura; Tryggvadóttír, Laufey; Småstuen, Milada Cvancarova; Holmqvist, Anna Sällfors; Hasle, Henrik; Ølsen, Jørgen H.

doi:10.1002/pbc.25661

Cited by 46 publications

(63 citation statements)

References 41 publications

(42 reference statements)

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“…Although our study does not attribute causality, this comprehensive overview provides important clinical information on the lifelong inpatient disease burden experienced by childhood cancer survivors overall and of a number of patient characteristics, including type of childhood cancer, type of late effect, sex, and attained age. Associations, including dose-response effects, between specific treatment regimens and the risk of selected late effects are being addressed in clinical case-cohort studies within the ALiCCS cohort [14]. …”

Section: Discussionmentioning

confidence: 99%

“…This retrospective, register-based cohort study is part of the collaborative study Adult Life after Childhood Cancer in Scandinavia (ALiCCS) (www.aliccs.org) [14]. The ALiCCS study was approved by the national bioethics committee, the data protection authority, or the national institute for health and welfare in the respective countries (Denmark: 2010-41-4334; Finland: THL/520/5.05.00/2016; Iceland: VSN 10–041; and Sweden: Ö 10–2010, 2011/19).…”

Section: Methodsmentioning

confidence: 99%

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Long-term inpatient disease burden in the Adult Life after Childhood Cancer in Scandinavia (ALiCCS) study: A cohort study of 21,297 childhood cancer survivors

et al. 2017

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BackgroundSurvivors of childhood cancer are at increased risk for a wide range of late effects. However, no large population-based studies have included the whole range of somatic diagnoses including subgroup diagnoses and all main types of childhood cancers. Therefore, we aimed to provide the most detailed overview of the long-term risk of hospitalisation in survivors of childhood cancer.Methods and findingsFrom the national cancer registers of Denmark, Finland, Iceland, and Sweden, we identified 21,297 5-year survivors of childhood cancer diagnosed with cancer before the age of 20 years in the periods 1943–2008 in Denmark, 1971–2008 in Finland, 1955–2008 in Iceland, and 1958–2008 in Sweden. We randomly selected 152,231 population comparison individuals matched by age, sex, year, and country (or municipality in Sweden) from the national population registers. Using a cohort design, study participants were followed in the national hospital registers in Denmark, 1977–2010; Finland, 1975–2012; Iceland, 1999–2008; and Sweden, 1968–2009. Disease-specific hospitalisation rates in survivors and comparison individuals were used to calculate survivors’ standardised hospitalisation rate ratios (RRs), absolute excess risks (AERs), and standardised bed day ratios (SBDRs) based on length of stay in hospital. We adjusted for sex, age, and year by indirect standardisation. During 336,554 person-years of follow-up (mean: 16 years; range: 0–42 years), childhood cancer survivors experienced 21,325 first hospitalisations for diseases in one or more of 120 disease categories (cancer recurrence not included), when 10,999 were expected, yielding an overall RR of 1.94 (95% confidence interval [95% CI] 1.91–1.97). The AER was 3,068 (2,980–3,156) per 100,000 person-years, meaning that for each additional year of follow-up, an average of 3 of 100 survivors were hospitalised for a new excess disease beyond the background rates. Approximately 50% of the excess hospitalisations were for diseases of the nervous system (19.1% of all excess hospitalisations), endocrine system (11.1%), digestive organs (10.5%), and respiratory system (10.0%). Survivors of all types of childhood cancer were at increased, persistent risk for subsequent hospitalisation, the highest risks being those of survivors of neuroblastoma (RR: 2.6 [2.4–2.8]; n = 876), hepatic tumours (RR: 2.5 [2.0–3.1]; n = 92), central nervous system tumours (RR: 2.4 [2.3–2.5]; n = 6,175), and Hodgkin lymphoma (RR: 2.4 [2.3–2.5]; n = 2,027). Survivors spent on average five times as many days in hospital as comparison individuals (SBDR: 4.96 [4.94–4.98]; n = 422,218). The analyses of bed days in hospital included new primary cancers and recurrences. Of the total 422,218 days survivors spent in hospital, 47% (197,596 bed days) were for new primary cancers and recurrences. Our study is likely to underestimate the absolute overall disease burden experienced by survivors, as less severe late effects are missed if they are treated sufficiently in the outpatient setting or in the primary health ca...

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Section: Discussionmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

Long-term inpatient disease burden in the Adult Life after Childhood Cancer in Scandinavia (ALiCCS) study: A cohort study of 21,297 childhood cancer survivors

et al. 2017

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“…Moreover, 25% of the survivors had discontinued any kind of FU. Most studies report still higher rates of survivors without any FU . Taken together, these findings show that the lack of confidence in GPs’ knowledge or expertise reported by several authors might compromise FU care even if necessary.…”

Section: Discussionmentioning

confidence: 68%

Impact of shared care program in follow‐up of childhood cancer survivors: An intervention study

Ducassou¹,

Chipi²,

Pouyade³

et al. 2017

Pediatric Blood & Cancer

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In this shared care program, survivors overcame distrust in their GP's knowledge and entered the FU program after their GPs had been involved in patient-centered education. Personalized and incentive-based guidance was very useful in helping survivors to adhere to FU. Support of a dedicated long-term FU team was very useful. A nationwide organization, consideration of special needs in subgroups of survivors and sustained funding are needed to adjust the program in the very long term.

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“…20 The ALiCCS study was approved by the national bioethics committee, the data protection authority, or the national institute for health and welfare in the respective countries (Denmark, 2010-41-4334; 20 The ALiCCS study was approved by the national bioethics committee, the data protection authority, or the national institute for health and welfare in the respective countries (Denmark, 2010-41-4334;…”

Section: Survivor and Comparison Cohortsmentioning

confidence: 99%

“…20 For each childhood cancer patient, 5 comparison subjects were randomly selected from the national population registers: they were alive on the date of the cancer diagnosis of the corresponding childhood cancer patient; were of the same sex, age, and country (Denmark and Iceland) or county/municipality (Finland, Norway and Sweden) of residence; and did not have a cancer diagnosis before the age of 20 years. 20 For each childhood cancer patient, 5 comparison subjects were randomly selected from the national population registers: they were alive on the date of the cancer diagnosis of the corresponding childhood cancer patient; were of the same sex, age, and country (Denmark and Iceland) or county/municipality (Finland, Norway and Sweden) of residence; and did not have a cancer diagnosis before the age of 20 years.…”

Section: Survivor and Comparison Cohortsmentioning

confidence: 99%

Risk of cardiovascular disease among Nordic childhood cancer survivors with diabetes mellitus: A report from adult life after childhood cancer in Scandinavia

Winther

Bhatia

Cederkvist

et al. 2018

Cancer

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BACKGROUND: Childhood cancer survivors have an increased risk of cardiovascular disease (CVD) and diabetes mellitus. Because diabetes is a potentially modifiable risk factor for CVD in the general population, it is important to understand how diabetes affects the risk of CVD among childhood cancer survivors. METHODS: This study examined the risk of CVD among survivors with diabetes and 142,742 population comparison subjects. From the national cancer registries of the 5 Nordic countries, 29,324 one-year survivors of cancer diagnosed before the age of 20 years between 1968 and 2008 were identified. Study subjects were linked to the national hospital registers. The cumulative incidence of CVD was determined with competing risk methods. A Cox proportional hazards model was used to estimate the effects of diabetes and cancer on the hazard of CVD. The interaction between diabetes and cancer was analyzed. RESULTS: Diabetes was diagnosed in 324 of the 29,324 one-year survivors, and CVD was diagnosed in 2108. The hazard of diabetes was 1.7 times higher among survivors than comparison subjects (hazard ratio [HR], 1.7; 95% confidence interval [CI], 1.5-1.9), whereas the HR of CVD was 3.6 (95% CI, 3.3-3.8) 1 to 15 years after the cancer diagnosis and 1.9 (95% CI, 1.8-2.0) after more than 15 years. Individuals with diabetes had a 2.4 times higher hazard of CVD (95% CI, 2.1-2.8) among both survivors and comparison subjects in comparison with individuals without diabetes. CONCLUSIONS: Childhood cancer survivors with diabetes have a markedly increased risk of CVD in comparison with survivors without diabetes. However, diabetes does not increase the risk of CVD more in survivors than the general population. Cancer 2018;124:4393-4400.

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The Adult Life After Childhood Cancer in Scandinavia (ALiCCS) Study: Design and Characteristics

Abstract: The ALiCCS study constitutes a new large resource for research on late effects of childhood cancers that include all types of childhood malignancies and has followed a large proportion of the survivors well into late adulthood.

Cited by 46 publications

References 41 publications

Long-term inpatient disease burden in the Adult Life after Childhood Cancer in Scandinavia (ALiCCS) study: A cohort study of 21,297 childhood cancer survivors

Long-term inpatient disease burden in the Adult Life after Childhood Cancer in Scandinavia (ALiCCS) study: A cohort study of 21,297 childhood cancer survivors

Impact of shared care program in follow‐up of childhood cancer survivors: An intervention study

Risk of cardiovascular disease among Nordic childhood cancer survivors with diabetes mellitus: A report from adult life after childhood cancer in Scandinavia

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