Employment, Health Care Utilization, Mental Health, and Mortality in Parents With a Chronically Ill Child: A Nationwide Population-Based Cohort Study

Abstract

Background: Chronic diseases in children can impact their parents; this may be overlooked in a clinical setting. Our objective was to investigate associations of chronic diseases in children with their parents’ employment, health care utilization, mental health, and mortality.  Methods: In a matched cohort study using nationwide and population-based data in Denmark we included parents to children (<18 years) with acute disseminated encephalomyelitis, multiple sclerosis, type 1 diabetes, inflammatory bowel disease and rheumatoid arthritis during 2008–15. The reference group was parents to sex- and age-matched unaffected children. Outcomes were employment (early retirement, cash benefits, income), health care utilization (e.g. general practitioner, or hospital visits), mental health (visits to psychiatry/psychology clinics, antidepressant drug redemptions), and mortality.  Findings: We included 13,769 parents with a chronically ill child and 138,606 control parents. One-parent families had an increased annual income after the child’s disease onset. Two-parent families had increased hazard of early retirement of 25% (95% CI=1∙01–1∙54, p=0∙04). Parents with a chronically ill child had a) increased rate of antidepressant drug redemptions or psychology/psychiatry visits (hazard ratio 1∙37; 95% CI=1∙28‒1∙46 at 1-year follow-up); b) increased health care utilization, with an increased marginal mean in primary care of 1% (95% CI=1∙00–1∙02; p=0∙005), hospital-affiliated visits of 19% (95% CI=1∙14–1∙24; p<0∙0001), and hospital admissions of 14% (95% CI=1∙09–1∙20; p<0∙0001); c) 69% increased mortality hazard (95% CI 1∙30–2∙18, p<0∙0001) in parents younger than 50 years with no comorbidities, albeit small in absolute numbers.  Interpretation: Pediatric chronic diseases were negatively associated with parental employment, mental health, and increased health care utilization. Parents to a chronically ill child who were younger than 50 years and who had no comorbidities also had increased mortality hazard. Funding Statement: Danish MS Society, Dagmar Marshalls Fond, Axel Muusfeldts Fond, Bent Boghs Fond, Viggo Bruuns Fond. Declaration of Interests: Dr. Boesen has served on a scientific advisory board for Teva; has received speaker honoraria for lecturing from Novartis, and support for congress participation from Teva, Novartis and Roche. Dr. Blinkenberg has served on scientific advisory boards for Genzyme, Roche, Biogen, Merck, Novartis and Teva; has received speaker honoraria from Genzyme, Biogen, Merck, Novartis, Teva and Roche; has received consulting honoraria from the Danish Multiple Sclerosis Society, Biogen, Teva, Roche and Merck; and has received funding for travel from Genzyme, Roche and Biogen. Dr. Thygesen has received honoraria for lecturing from Rigshospitalet (Copenhagen, Denmark), Statistics Denmark and Sanofi Aventis. Dr. Uldall reports no disclosures. Dr. Born has received speaker honoraria from Novartis and has served on advisory boards for Biogen, Novartis and Roche. Dr Magyari has served on the scientific advisory board for Biogen, Sanofi, Teva, Roche, Novartis, and Merck; has received honoraria for lecturing from Biogen, Merck, Novartis, Sanofi, Genzyme, and support for congress participation from Biogen, Genzyme, Teva, and Roche. Dr. Eriksson reports no disclosures. Ethics Approval Statement: The Danish Health and Medicines Authority waived the requirement for patient informed consent to access medical records (case number: 3-3013-896/1). The study was approved by the Danish Data Protection Agency (30-1423/03567) and the Danish Health Data Authority (FSEID: 00003621/DST: 707103).