3.1.1 Literature Evidence
Psychosocial needs of pediatric patients with IBD include three main topics: transmission of information/knowledge, psychological/psychotherapeutic interventions, and promotion of psychosocial support14. An adequate communication of information to the patient (literacy) is associated with a better disease management with possible positive effects on coping competences, perception of self-efficacy, and satisfaction with the services received14,15. On this point, there are problems of continuity in the flow of information related to organizational dysfunctionality16, especially in the moment of transition between structures dedicated to pediatric and to adult age. Pediatric IBD patients experience a higher rate of psychological problems (e.g. depression, sense of helplessness, anxiety, family problems, and school difficulties) compared with the general population, requiring more psychological support17–22. Several validated psychodiagnostic tools are available for the management of IBD, including the Pediatric Quality of Life (PedsQL) Family Impact Module23, the KidScreen-1024, the IBD Specific Anxiety Scale (IBD-SAS)25, and the Children’s Depression Inventory (CDI)26). Interestingly, most psychotherapeutic treatments showed to be effective in terms of clinical management of disease and psychological support to the patient27–30. Finally, attention should be paid to the psychosocial support to the pediatric IBD patient 31. This could be done in various methods such as narrative exchange of experiences, self-help groups, mapping strengths and weaknesses of patients and their network of social support, development of coping and problem-solving skills, integration of peers/family contexts/care settings32. In this patinet associations can play a big role33. The transition in the management of IBD from childhood to adulthood should also be considered, supporting the integration between these phases both in terms of patient's personal identity and health organization and coordination of the operators involved34,35. Importantly, the cooperation between physicians and nurses in this transition period is crucial to ensure an optimal management36–38. In addition, the connection between health care professionals and school/life contexts has been associated with improved patient care 39–45. Of note, an uncomfortable social context could lead to negative behaviors such as personal isolation, feelings of embarrassment/humiliation in relationships, and difficulty in formulating requests for help46,47. The role of family and caregivers is relevant in the management of IBD patients during childhood, but to date it is still poorly explored48. On the other hand, appreciable results on caregivers’ quality of life and disease management capabilities were reported after psychological and social support interventions 49,50. The coordination between different professional figures (e.g. health professional, psychologist, nutritionist, and social worker) could improve the synergy in responding to specific psycho-social needs of patients and support patient engagement in the care process 51–54.
3.1.2 Final Consensus Statement
Based on literature evidence, attention should be given to the psychological needs of pediatric IBD patients. In this scope, the experts claimed for the following recommendations.
Patients should be managed through a multidisciplinary approach
Different professionals should be involved in the management of pediatric IBD patients including physicians (Gastroenterologists, radiologists, surgeons, pediatricians, rheumatologists, dermatologists, ophthalmologists, and general practitioners), nurses, psychologists, nutritionists, and social workers.
Patients with IBD should be provided with early psychological screening and psychosocial support
Patient psychology should be investigated already at the time of IBD diagnosis to promptly identify patients at risk of psychological and social distress55. The assessment should consider the social and psychological status of the patient in order to intervene on targeted psychotherapeutic plan and/or on a psychosocial plan to promote adaptation and self-management, as well as to build a proactive role (engagement) in the management of disease impacting on quality of life. Patient's distress should be evaluated at each follow-up visit and/or hospital access56.
Psychosocial support should be provided to the patient's family / caregiver
There is little evidence about the distress of family and caregivers of IBD patients51. More studies are needed to deepen the interventions dedicated to them, as well as to define their role in the management of pediatric IBD patients.
Connection with the school
It is necessary to provide an adequate information on IBD at school and to promote collaboration between health care givers and teaching staff to prevent disease-related stigma and the loss of educational continuity during relapses or hospitalizations.
Awareness of IBD in the general population should be increased
Greater awareness of IBD in the general population are necessary to limit the formation of social stigma and contain its negative effects on patient life57. A recent survey conducted by the European Federation of Crohn’s and Ulcerative Colitis Associations (EFCCA) found that patient organizations play a key role in reducing fears and worries of IBD patients.33 For this reason, close cooperation between physicians and patient associations is desirable in order to promote the dissemination of information to IBD patients and to ensure an optimal management.
Patients transitioning from pediatrics to adulthood should be managed through the combined work of pediatric and adult experts (transitional ambulatory)
Pediatric and adult professionals should be involved in the management of patients with intermediate age to guide therapeutic decisions58.