Ingrid Glimelius1,2,*, Annika Englund3,*, Klaus Rostgaard4, Karin E. Smedby2, Sandra Eloranta2, Peter de Nully Brown5, Christoffer Johansen6, Peter Kamper7, Gustaf Ljungman3, Lisa Lyngsie Hjalgrim4,8, Henrik Hjalgrim4,5
1 Department of Immunology Genetics and Pathology, Uppsala University, Sweden, 2 Division of Clinical Epidemiology, Department of Medicine, Karolinska Institutet, Stockholm, Sweden, 3 Department of Women's and Children's Health, Uppsala University, Uppsala, Sweden, 4 Department of Epidemiology Research, Statens Serum Institut, Copenhagen S, Denmark, 5 Department of Haematology, Rigshospitalet, Copenhagen, Denmark, 6 Danish Cancer Society Research Center, University of Copenhagen, Denmark, 7 Department of Haematology, Aarhus University Hospital, Denmark, 8 Department of Paediatrics and Adolescent Medicine, Rigshospitalet, Copenhagen, Denmark
*Authors contributed equally.
Background: Late adverse effects of treatment are a matter of great importance for young Hodgkin lymphoma (HL) survivors. It is not well described how late effects are distributed among different HL survivors and whether the problem is limited to a minority of patients when using contemporary treatment protocols. We therefore investigated the distribution of long-term health care use among relapsed and non-relapsed HL-survivors contrasted to comparators.
Methods: We used nation-wide registers to assess number of inpatient bed-days and specialist outpatient visits for 1048 pediatric and young adult (≤25 years) HL-patients diagnosed 1990–2010 in Sweden and Denmark and for 5175 country, age and gender-matched comparators. Study participants were followed up to 24 years. Relapsing (n = 140, 12%), non-relapsing patients (n = 899, 87%), and comparators were compared for the burden of health care use excluding first year after diagnosis/relapse. Means of hazard ratios (HRs) from Cox regression analyses for the different indications for the first subsequent in- and outpatient visits were classified according to ICD-10 chapters.
Results: The distribution of health care use was uneven among the HL survivors, 10% of the patients accounted for approximately 80% of all bed-days, and 50% accounted for approximately 90% of all outpatient visits. More than half of non-relapsing patients (n = 533, 55%) had no hospitalisations during follow-up, i.e. beyond the first year after diagnosis, whereas this was the case only for 24% (n = 30) of relapsed patients, beyond the first year after relapse. Mean number of bed days for patients having one or more hospitalization was: 10 for comparators, 11 for non-relapsed patients and 42 for post-relapsed patients. Significantly increased HRs were noted among relapsed patients compared with non-relapsed patients for indications of health care use pertaining to a broad range of diseases (infections, blood disorders, circulatory, respiratory, digestive, genitourinary, skin diseases, musculoskeletal and symptoms).
Conclusions: In the absence of relapse, the majority of young HL survivors experienced no or few inpatient bed-days. In contrast, subsequent to HL relapse, patients experienced increased health care use across a broad panorama of side effects. These findings challenge the impression of high morbidity among HL survivors in general, and render relapse-status important in investigations aimed at predicting late effects.