Table 1 Applicable domains to measure burden of disease: direct medical costs, direct non-medical costs, indirect costs, and quality of life aspects
Resource utilization domain | Possible contents and practical issues |
|---|---|
Health care co-payments or OOPE (direct medical costs) | Â |
Outpatient | Co-payments or deductibles; health care services not covered by health plans and paid for by the parents |
- visits to physicians (general practitioners and specialists) | Additional services like German "IgeL"; (follow-up) visits causing a surgery fee or other co-payments |
- visits to non-physicians | E.g. physiotherapy, ergotherapy, logopedics, osteopathy, massages, animal/music therapy, psychotherapy etc. (co-)paid for by the parents |
- medication | Parental drug expenses (OTC drugs not covered by the insurance plan or co-payment for Rx) |
- aids and devices | E.g. inhalators, home monitor, glasses, orthotics, wheelchair, specialized pushchair, sitting aid, hearing aid, corset etc. (co-)paid for by the parents |
- outpatient/home care | Nursing staff, specialized bed (co-)paid for by the parents |
Inpatient | Co-payments or deductibles; health care services not covered by health plans and paid for by the patient |
- initial hospitalization | Co-Payments/deductibles for extra therapies/services |
- re-hospitalization | Co-Payments/deductibles for extra therapies/services |
- rehabilitation/regimen | Co-Payments/deductibles for extra therapies/services |
Other disease-related OOPE (direct non-medical costs) | Â |
- transportation | Travel costs for hospital visits (initial hospitalization, re-hospitalization) and transport to therapies/specialists, including parking |
- accommodation | Lodging costs during the infants' hospital stays |
- home or car remodeling | Adaptations to the families' home or car |
- meals | Physician-ordered food |
- other/special medical approaches | Alternative therapies: naturopathy, homeopathy, light therapy etc. (possibly overlapping with visits to non-physicians, see above) |
- childcare/babysitting for other siblings | During absence of parents while accompanying the preterm child to hospital visits or therapies |
- special education/schooling | Coaching/tutoring (not relevant for infants, but in later years) |
- home help | For housekeeping as parent time is required caring for the preterm child |
- higher insurance premiums | In private health insurance or supplementary insurance |
Indirect costs | Â |
- income losses | Due to change in work status of parents; lost wages (in very later life this is relevant for the preterm child as well: indirect costs caused by future limited ability to work) |
- missed working days | Does not automatically mean reduced income, but often absence causes problems at work (psychologically and perhaps financially in the long run as well) |
- time losses (opportunity costs) | For care, travelling, hospital visits (asking how much of this time would otherwise have been spent to work) |
Intangible costs: Quality of life aspects | Â |
- QoL of children | Development problems, infections, disabilities with influence on physical, emotional and social functioning |
- QoL/physical and emotional burden on parents or other caregivers | Prenatal phase (anxiety, self-reproaches), perinatal phase (stress related to birth, separation from baby on NICU), postnatal phase (psychological distress: fear of losing child/infections/development problems, self-reproaches, burden on relationship to siblings, marital stress, maternal depression, restricted social contacts, feeling of isolation etc.) |