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. 2022 Jul 18;11(14):4161. doi: 10.3390/jcm11144161

Table A1.

Definitions and data sources.

Event of Interest (Dates) Definition and Specification
First symptoms 1 First IBD symptoms, as reported by the patient or their parent/caregiver.
First contact with parents/caregivers/other 1 Defined as the first person the child presented the symptoms to, such as parent, caregiver, other family member. In case the patient went directly to a doctor this would be their first contact.
First healthcare contact 2 First visit to a healthcare professional due to potential IBD symptoms. All obtained healthcare data were reviewed for the first presentation with the following symptoms as defined in [1,2] and Community Health pathways *:
  • -

    Bloody diarrhoea

  • -

    Rectal bleeding

  • -

    Tenesmus

  • -

    Urgency

  • -

    Faecal incontinence

  • -

    Fatigue

  • -

    Nocturnal defecation

  • -

    Abdominal pain

  • -

    Anorexia

  • -

    Fever

  • -

    Unintentional weight loss

  • -

    Chronic diarrhoea

  • -

    Malaise

  • -

    Extraintestinal manifestations

  • -

    Other
First relevant specialist visit 2 First specialist that would make final diagnosis/start of treatment; in this study gastroenterologist.
Formal diagnosis 2 IBD diagnosis confirmed by endoscopy
Patient-associated delay Time from the first symptoms to notifying parent/caregiver
Parent-associated delay Time from parents noticing the symptoms to seeking healthcare
Healthcare delay From the first clinical visit to formal diagnosis
Total DD ** From first symptoms (as reported by the patient/parent) to formal diagnosis of disease
Number of clinical contacts Number of in-person visits to healthcare professional with complains related to the IBD diagnosis were counted. Additional forms of contact, such as phone calls, emails and other were counted separately. The number of hospitalisations was also counted for each participant.
Other types of contact Contacts with healthcare professional not made in-person e.g., e-mail, phone call, text message.

Data source: 1—Patient and parent questionnaires; 2—Healthcare notes. * Community Health pathways is an international collective of health and social care organisations that deliver reliable source of information to clinicians [42]. ** Diagnostic Delay.