Health care utilisation following childhood acute lymphoblastic leukaemia: a population-based matched cohort study

Karen Schow Jensen, Birgitte Klug Albertsen, Henrik Schrøder, Alina Zalounina Falborg, Kjeld Schmiegelow, Steen Rosthøj, Michael Thude Callesen, Peter Vedsted, Karen Schow Jensen, Birgitte Klug Albertsen, Henrik Schrøder, Alina Zalounina Falborg, Kjeld Schmiegelow, Steen Rosthøj, Michael Thude Callesen, Peter Vedsted

Abstract

Objectives: Survival among children diagnosed with acute lymphoblastic leukaemia (ALL) has increased considerably. However, morbidity in survivors constitutes a potential increasing burden not limited to secondary health care. Our objectives were to compare health care utilisation, including both primary and secondary health care, between childhood ALL survivors and matched references up to 15 years after curative treatment. Moreover, to increase knowledge on survivors' health service seeking behaviour as time from treatment elapsed.

Design and setting: A Danish population-based matched cohort study linking multiple nationwide registries.

Participants: 675 cases, diagnosed with childhood (1.0-17.9 years) ALL between 1994 and 2015, and 6750 matched references sampled randomly from the source population (matched on age, gender and geographical region).

Primary outcome measures: Repeated consultations in general practice and hospital (outpatient and inpatient) estimated as yearly rates from 2.5 years after diagnosis and onwards. We compared cases and references with yearly incidence rate ratios (IRRs) from negative binomial regression models.

Results: Survivors of childhood ALL had a mean number of yearly daytime contacts in general practice of 4.75 (95% CI 4.41 to 5.11) the first year, corresponding to an IRR of 1.85 (95% CI 1.71 to 2.00); decreasing to 1.16 (1.01 to 1.34) after 15 years, and without significant impact of gender (p=0.894) or age (p=0.399). For hospital contacts, ALL survivors had a mean number of yearly contacts of 14.21 (13.38-15.08) the first year, corresponding to an IRR of 31.50 (28.29-35.07); decreasing to 2.42 (1.59-3.68) after 15 years. No differences were found across calendar time.

Conclusions: ALL survivors used significantly more health care services across sectors than the reference population. Decreasing use over 15 years illustrated the dynamics of health care needs; this knowledge may inform the future organisation of integrated follow-up programmes.

Trial registration number: NCT03985826.

Keywords: epidemiology; leukaemia; paediatric oncology; primary care.

Conflict of interest statement

Competing interests: BKA declares the following: sponsor for the investigator initiated NOR-GRASPALL 2016 study. KS declares the following: Speaker and/or Advisory Board Honoraria from Jazz Pharmaceuticals (2020) and Servier (2020); speaker fee from Amgen (2020) and Medscape (2020); Educational grant from Servier (2020).

© Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.

Figures

Figure 1
Figure 1
Flow diagram of the study population.*Index date: 2.5 years after diagnosis of acute lymphoblastic leukaemia. BCR-ALL, B-cell precursor acute lymphoblastic leukaemia; CPR-number, Civil Personal Registration number; T-ALL, T-lineage acute lymphoblastic leukaemia.
Figure 2
Figure 2
General practice health care utilisation during 15 years.A total of 675 cases compared with 6750 references. Health care utilisation after the index date is divided into daytime consultations, out-of-hours consultations and diagnostic procedures in general practice. Top panel: Mean yearly number of contacts/diagnostic procedures presented as crude rates. Bottom panel: Incidence rate ratios adjusted for age and sex. Vertical lines represent 95% CIs. Index date: 2.5 years after diagnosis of acute lymphoblastic leukaemia for cases and the corresponding date for references.
Figure 3
Figure 3
Hospital health care utilisation during 15 years.Hospital health care utilisation after the index date; 675 cases compared with 6750 references. Top panel: Mean yearly number of contacts presented as crude rates. Bottom panel: Incidence rate ratios adjusted for age and sex. Vertical lines represent 95% CIs.Hospital health care utilisation: Including hospital inpatient and hospital outpatient contacts. Index date: 2.5 years after diagnosis of acute lymphoblastic leukaemia for cases and the corresponding date for references.
Figure 4
Figure 4
Health care utilisation comparing three calendar times.cases only, health care utilisation by year after the index date comparing three calendar times (the NOPHO ALL treatment protocols from 1992 (n=231), 2000 (n=210) and 2008 (n=234)). Health care utilisation is stratified on health care setting (hospital and general practice). Top panel: Mean yearly number of contacts presented as crude rates. Bottom panel: Incidence rate ratios of ALL2000 and ALL2008 compared with ALL1992 (the ALL1992 protocol was set as reference) adjusted for age and sex. Vertical lines represent 95% CIs. Index date: 2.5 years after diagnosis of acute lymphoblastic leukaemia. NOPHO, the Nordic Society of Paediatric Haematology and Oncology.
Figure 5
Figure 5
Health care utilisation comparing non-high-risk and high-risk groups.ALL cases only, health care utilisation by year after the index date comparing non-high-risk (n=515) and high-risk groups (n=160) (ie, therapy). Health care utilisation is stratified on health care setting (hospital and general practice). Top panel: Mean yearly number of contacts presented as crude rates. Bottom panel: Incidence rate ratios of high risk compared with non-high risk as reference adjusted for age and sex. Vertical lines represent 95% CIs. Index date: 2.5 years after diagnosis of acute lymphoblastic leukaemia.

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