Healthcare service use in paediatric inflammatory bowel disease: a questionnaire on patient and parent care experiences in Germany
Abstract Background Paediatric inflammatory bowel disease (PIBD) patients require chronic care over the lifespan. Care for these patients is complex, as it is adapted for childrens’ life stages and changing disease activity. Guideline based care for this patient group recommends a multidisciplinary...
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| Format: | Article |
| Language: | English |
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BMC
2023-11-01
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| Series: | BMC Gastroenterology |
| Subjects: | |
| Online Access: | https://doi.org/10.1186/s12876-023-03021-w |
| _version_ | 1797630173511680000 |
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| author | Aletta Boerkoel Luisa Tischler Kalina Kaul Heiko Krause Ulrike Stentzel Stefan Schumann Neeltje van den Berg Jan de Laffolie CEDNA study group |
| author_facet | Aletta Boerkoel Luisa Tischler Kalina Kaul Heiko Krause Ulrike Stentzel Stefan Schumann Neeltje van den Berg Jan de Laffolie CEDNA study group |
| author_sort | Aletta Boerkoel |
| collection | DOAJ |
| description | Abstract Background Paediatric inflammatory bowel disease (PIBD) patients require chronic care over the lifespan. Care for these patients is complex, as it is adapted for childrens’ life stages and changing disease activity. Guideline based care for this patient group recommends a multidisciplinary approach, which includes in addition to paediatric gastroenterologists, nutritional and psychological care services. For PIBD patients, a discrepancy between available guideline-based multidisciplinary care and actual care has been found from the provider side, but to what extent patients experience this is unclear. Objectives To identify which healthcare services were used and whether socio-demographic, geographic or disease related factors have an influence on health service utilisation. Methods A standardised questionnaire (CEDNA) was distributed amongst parents of children aged 0–17 diagnosed with PIBD and adolescents (aged 12–17) with a PIBD. Items related to health service use were analysed, these included specialist care, additional care services, reachability of services and satisfaction with care. Logistic regression models on additional service use were calculated. Service availability and reachability maps were made. Results Data was analysed for 583 parent and 359 adolescent questionnaires. Over half of the respondents had Crohn’s Disease (CD, patients n = 186 parents n = 297). Most patients and parents reported their paediatric gastroenterologist as their main care contact (patients 90.5%; parents 93%). Frequently reported additional services were nutritional counselling (patients 48.6%; parents 42.2%) and psychological support (patients 28.1%; parents 25.1%). Nutritional counselling was more frequently reported by CD patients in both the patient (OR 2.86; 95%CI 1.73–4.70) and parent (OR 3.1; 95%CI 1.42–6.71) sample. Of the patients, 32% reported not using any additional services, which was more likely for patients with an illness duration of less than one year (OR 3.42; 95%CI 1.26–9.24). This was also observed for the parent population (OR 2.23; 95%CI 1.13–4.4). The population-based density of specialised paediatric gastroenterologists was not proportionate to the spatial distribution of patients in Germany, which may have an influence on access. Conclusions Parents and children reported highly specialised medical care. Multidisciplinary care offers do not reach the entire patient population. Access to multidisciplinary services needs to be ensured for all affected children. |
| first_indexed | 2024-03-11T11:04:26Z |
| format | Article |
| id | doaj.art-7bd9aff0e25049fa8a5d237a2117e153 |
| institution | Directory Open Access Journal |
| issn | 1471-230X |
| language | English |
| last_indexed | 2024-03-11T11:04:26Z |
| publishDate | 2023-11-01 |
| publisher | BMC |
| record_format | Article |
| series | BMC Gastroenterology |
| spelling | doaj.art-7bd9aff0e25049fa8a5d237a2117e1532023-11-12T12:19:29ZengBMCBMC Gastroenterology1471-230X2023-11-0123111210.1186/s12876-023-03021-wHealthcare service use in paediatric inflammatory bowel disease: a questionnaire on patient and parent care experiences in GermanyAletta Boerkoel0Luisa Tischler1Kalina Kaul2Heiko Krause3Ulrike Stentzel4Stefan Schumann5Neeltje van den Berg6Jan de Laffolie7CEDNA study groupInstitute for Community Medicine, University Medicine GreifswaldInstitute for Community Medicine, University Medicine GreifswaldGeneral Pediatrics & Pediatric Gastroenterology, Justus-Liebig-UniversityInstitute for Community Medicine, University Medicine GreifswaldInstitute for Community Medicine, University Medicine GreifswaldGeneral Pediatrics & Pediatric Gastroenterology, Justus-Liebig-UniversityInstitute for Community Medicine, University Medicine GreifswaldGeneral Pediatrics & Pediatric Gastroenterology, Justus-Liebig-UniversityAbstract Background Paediatric inflammatory bowel disease (PIBD) patients require chronic care over the lifespan. Care for these patients is complex, as it is adapted for childrens’ life stages and changing disease activity. Guideline based care for this patient group recommends a multidisciplinary approach, which includes in addition to paediatric gastroenterologists, nutritional and psychological care services. For PIBD patients, a discrepancy between available guideline-based multidisciplinary care and actual care has been found from the provider side, but to what extent patients experience this is unclear. Objectives To identify which healthcare services were used and whether socio-demographic, geographic or disease related factors have an influence on health service utilisation. Methods A standardised questionnaire (CEDNA) was distributed amongst parents of children aged 0–17 diagnosed with PIBD and adolescents (aged 12–17) with a PIBD. Items related to health service use were analysed, these included specialist care, additional care services, reachability of services and satisfaction with care. Logistic regression models on additional service use were calculated. Service availability and reachability maps were made. Results Data was analysed for 583 parent and 359 adolescent questionnaires. Over half of the respondents had Crohn’s Disease (CD, patients n = 186 parents n = 297). Most patients and parents reported their paediatric gastroenterologist as their main care contact (patients 90.5%; parents 93%). Frequently reported additional services were nutritional counselling (patients 48.6%; parents 42.2%) and psychological support (patients 28.1%; parents 25.1%). Nutritional counselling was more frequently reported by CD patients in both the patient (OR 2.86; 95%CI 1.73–4.70) and parent (OR 3.1; 95%CI 1.42–6.71) sample. Of the patients, 32% reported not using any additional services, which was more likely for patients with an illness duration of less than one year (OR 3.42; 95%CI 1.26–9.24). This was also observed for the parent population (OR 2.23; 95%CI 1.13–4.4). The population-based density of specialised paediatric gastroenterologists was not proportionate to the spatial distribution of patients in Germany, which may have an influence on access. Conclusions Parents and children reported highly specialised medical care. Multidisciplinary care offers do not reach the entire patient population. Access to multidisciplinary services needs to be ensured for all affected children.https://doi.org/10.1186/s12876-023-03021-wGastroenterologyHealth services researchCEDNA-questionnairePaediatric inflammatory bowel diseasePatient experienceParent experience |
| spellingShingle | Aletta Boerkoel Luisa Tischler Kalina Kaul Heiko Krause Ulrike Stentzel Stefan Schumann Neeltje van den Berg Jan de Laffolie CEDNA study group Healthcare service use in paediatric inflammatory bowel disease: a questionnaire on patient and parent care experiences in Germany BMC Gastroenterology Gastroenterology Health services research CEDNA-questionnaire Paediatric inflammatory bowel disease Patient experience Parent experience |
| title | Healthcare service use in paediatric inflammatory bowel disease: a questionnaire on patient and parent care experiences in Germany |
| title_full | Healthcare service use in paediatric inflammatory bowel disease: a questionnaire on patient and parent care experiences in Germany |
| title_fullStr | Healthcare service use in paediatric inflammatory bowel disease: a questionnaire on patient and parent care experiences in Germany |
| title_full_unstemmed | Healthcare service use in paediatric inflammatory bowel disease: a questionnaire on patient and parent care experiences in Germany |
| title_short | Healthcare service use in paediatric inflammatory bowel disease: a questionnaire on patient and parent care experiences in Germany |
| title_sort | healthcare service use in paediatric inflammatory bowel disease a questionnaire on patient and parent care experiences in germany |
| topic | Gastroenterology Health services research CEDNA-questionnaire Paediatric inflammatory bowel disease Patient experience Parent experience |
| url | https://doi.org/10.1186/s12876-023-03021-w |
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