| Burden of disease . | Burden of care/disease management . | Life challenges and constraints on daily activities . |
|---|---|---|
| Complexity of diagnosis • Potential long delay between onset of symptoms and a confirmed diagnosis Some doctors doubt symptoms described by parents/carers and the young person prior to diagnosis • Unmanaged symptoms can be severe enough to require emergency hospital admission • Risk of serious comorbid inflammatory conditions Physical complaints/symptoms • Diarrhoea/urgency to use toilet • Abdominal pain • Painful joints •Chronic fatigue • Perianal [fistulizing] disease Extremely embarrassing and stressful, especially among adolescents | Time-consuming self-management even when feeling well • Early responsibility for own health • Competence taking complex daily medication regimens • Scheduling/re-scheduling infusions around education needs such as national examinations to avoid academic failure Attending frequent medical appointments across multiple specialties and healthcare professionals • Rheumatologist for joint problems • Dietitian • Mental health worker for chronic stress • Vaccine specialist who understands how their immunosuppressive drugs will affect immunization • Regular intravenous infusions at specific healthcare facilities • Frequent hospitalizations, including for surgery • Pharmacy visits to collect medication Families, parents/carers • Scheduling appointments around parent/carer work schedules and activities of other family members [work absenteeism] • Emotional, physical and financial support required for the young person with IBD | Limitations on physical, social and education activities • Frustration when unable to keep up with peers • Missed school days • Need to find inner strength to develop resilience and determination to overcome challenges and achieve personal goals • Disadvantaged when accessing work/employment market • Difficulties in establishing personal relationships and setting up their own families in early adulthood • Lack of flexibility of infusion clinics potentially limits choice of work/education placements if travel costs to ‘home’ clinic are prohibitive Lack of understanding from peers • IBD symptoms can be a source of ridicule despite talking about their illness. For example: • A young person’s need for frequent bathroom visits • An inability to exercise due to pain • Weight gain due to steroids |
| Burden of disease . | Burden of care/disease management . | Life challenges and constraints on daily activities . |
|---|---|---|
| Complexity of diagnosis • Potential long delay between onset of symptoms and a confirmed diagnosis Some doctors doubt symptoms described by parents/carers and the young person prior to diagnosis • Unmanaged symptoms can be severe enough to require emergency hospital admission • Risk of serious comorbid inflammatory conditions Physical complaints/symptoms • Diarrhoea/urgency to use toilet • Abdominal pain • Painful joints •Chronic fatigue • Perianal [fistulizing] disease Extremely embarrassing and stressful, especially among adolescents | Time-consuming self-management even when feeling well • Early responsibility for own health • Competence taking complex daily medication regimens • Scheduling/re-scheduling infusions around education needs such as national examinations to avoid academic failure Attending frequent medical appointments across multiple specialties and healthcare professionals • Rheumatologist for joint problems • Dietitian • Mental health worker for chronic stress • Vaccine specialist who understands how their immunosuppressive drugs will affect immunization • Regular intravenous infusions at specific healthcare facilities • Frequent hospitalizations, including for surgery • Pharmacy visits to collect medication Families, parents/carers • Scheduling appointments around parent/carer work schedules and activities of other family members [work absenteeism] • Emotional, physical and financial support required for the young person with IBD | Limitations on physical, social and education activities • Frustration when unable to keep up with peers • Missed school days • Need to find inner strength to develop resilience and determination to overcome challenges and achieve personal goals • Disadvantaged when accessing work/employment market • Difficulties in establishing personal relationships and setting up their own families in early adulthood • Lack of flexibility of infusion clinics potentially limits choice of work/education placements if travel costs to ‘home’ clinic are prohibitive Lack of understanding from peers • IBD symptoms can be a source of ridicule despite talking about their illness. For example: • A young person’s need for frequent bathroom visits • An inability to exercise due to pain • Weight gain due to steroids |
| Burden of disease . | Burden of care/disease management . | Life challenges and constraints on daily activities . |
|---|---|---|
| Complexity of diagnosis • Potential long delay between onset of symptoms and a confirmed diagnosis Some doctors doubt symptoms described by parents/carers and the young person prior to diagnosis • Unmanaged symptoms can be severe enough to require emergency hospital admission • Risk of serious comorbid inflammatory conditions Physical complaints/symptoms • Diarrhoea/urgency to use toilet • Abdominal pain • Painful joints •Chronic fatigue • Perianal [fistulizing] disease Extremely embarrassing and stressful, especially among adolescents | Time-consuming self-management even when feeling well • Early responsibility for own health • Competence taking complex daily medication regimens • Scheduling/re-scheduling infusions around education needs such as national examinations to avoid academic failure Attending frequent medical appointments across multiple specialties and healthcare professionals • Rheumatologist for joint problems • Dietitian • Mental health worker for chronic stress • Vaccine specialist who understands how their immunosuppressive drugs will affect immunization • Regular intravenous infusions at specific healthcare facilities • Frequent hospitalizations, including for surgery • Pharmacy visits to collect medication Families, parents/carers • Scheduling appointments around parent/carer work schedules and activities of other family members [work absenteeism] • Emotional, physical and financial support required for the young person with IBD | Limitations on physical, social and education activities • Frustration when unable to keep up with peers • Missed school days • Need to find inner strength to develop resilience and determination to overcome challenges and achieve personal goals • Disadvantaged when accessing work/employment market • Difficulties in establishing personal relationships and setting up their own families in early adulthood • Lack of flexibility of infusion clinics potentially limits choice of work/education placements if travel costs to ‘home’ clinic are prohibitive Lack of understanding from peers • IBD symptoms can be a source of ridicule despite talking about their illness. For example: • A young person’s need for frequent bathroom visits • An inability to exercise due to pain • Weight gain due to steroids |
| Burden of disease . | Burden of care/disease management . | Life challenges and constraints on daily activities . |
|---|---|---|
| Complexity of diagnosis • Potential long delay between onset of symptoms and a confirmed diagnosis Some doctors doubt symptoms described by parents/carers and the young person prior to diagnosis • Unmanaged symptoms can be severe enough to require emergency hospital admission • Risk of serious comorbid inflammatory conditions Physical complaints/symptoms • Diarrhoea/urgency to use toilet • Abdominal pain • Painful joints •Chronic fatigue • Perianal [fistulizing] disease Extremely embarrassing and stressful, especially among adolescents | Time-consuming self-management even when feeling well • Early responsibility for own health • Competence taking complex daily medication regimens • Scheduling/re-scheduling infusions around education needs such as national examinations to avoid academic failure Attending frequent medical appointments across multiple specialties and healthcare professionals • Rheumatologist for joint problems • Dietitian • Mental health worker for chronic stress • Vaccine specialist who understands how their immunosuppressive drugs will affect immunization • Regular intravenous infusions at specific healthcare facilities • Frequent hospitalizations, including for surgery • Pharmacy visits to collect medication Families, parents/carers • Scheduling appointments around parent/carer work schedules and activities of other family members [work absenteeism] • Emotional, physical and financial support required for the young person with IBD | Limitations on physical, social and education activities • Frustration when unable to keep up with peers • Missed school days • Need to find inner strength to develop resilience and determination to overcome challenges and achieve personal goals • Disadvantaged when accessing work/employment market • Difficulties in establishing personal relationships and setting up their own families in early adulthood • Lack of flexibility of infusion clinics potentially limits choice of work/education placements if travel costs to ‘home’ clinic are prohibitive Lack of understanding from peers • IBD symptoms can be a source of ridicule despite talking about their illness. For example: • A young person’s need for frequent bathroom visits • An inability to exercise due to pain • Weight gain due to steroids |
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