Mixed educational camps for children and adolescents with type 1 diabetes and cystic fibrosis: A new therapeutic alliance

Over the years, many summer camps for cystic fibrosis (CF) have been closed worldwide due to the risk of cross-infection. In particular, the main obstacle is the acquisition of Burkholderia cepacia, a multidrug-resistant Gram-negative, associated with chronic colonization of the respiratory tract in patients with CF and frequently with rapid decline in pulmonary function, increased hospitalization, and earlier death.1, 2 Nevertheless, many studies have shown various physical and psychological benefits achieved with participation of group activities: most patients felt that they had made a subjective improvement (higher exercise tolerance, more energy, less fatigue, increased appetite).1, 3 Despite the strict adherence to principles of hygiene and the exclusion of patients colonized with B. cepacia from the summer camps, no guarantees can be provided that cross-infection of other bacteria will not occur.1 Many authors believe that the reinstitution of summer camps should be considered.4 Our Cystic Fibrosis Unit and Diabetes Centre of the Giannina Gaslini Institute in Genoa, Italy, have started experimenting an innovative and inclusive program. Since 2001, our Diabetes Centre organizes two summer camps every year for pediatric patients affected by diabetes mellitus (DM) type 1, supported by the Juvenile Diabetes Association of Genoa. In 2022, we decided to include one patient with CF per camp with the support of Italian Cystic Fibrosis Federation (Lega Italiana Fibrosi Cistica): one affected by CF-related diabetes and one who wasn't. Our aim is to diffuse this idea of including children with CF (with or without DM) into DM camps, to educate them on the importance of their treatments, helping them gain independence and self-esteem. Our educational camps last 1 week. During the day, the children participate in different activities (games and sports) to promote exercise and education, while having fun and interacting with others. The presence of pediatricians, pediatric residents, pediatric nurses, a psychologist, and a nutritionist were guaranteed for each experience. The pediatric residents spend training periods in both diabetology and CF centers in our hospital, therefore, were adequately prepared to take care of both diabetic and CF patients. The residents were assigned groups of six children to take care of and follow during the moment of treatment, whereas the nurses took care of infusion and sensor set changes, drug administration, and aerosol. We decided to align the moment of treatment (30 min before each meal) between the two types of patients so that all children could observe the reciprocal therapies: when the diabetic patients changed their infusion sets or sensors, monitored their glucose levels, and administered insulin, the patient affected by CF took his pancreatic enzymes and vitamins, did respiratory physiotherapy, and inhaled therapy. During this period, all patients were monitored by pediatricians, residents, and nurses, and treatment choices or actions were explained to the children. Despite the many differences between the two types of patients, the chronicity of the diseases and the necessity of a strict adherence to treatment, physical activity, and a healthy diet, we were able to emphasize the same goals and create a supportive group atmosphere. The first summer camp included 32 patients from 6 to 10 years of age and was based on sailing and snorkeling lessons during the day, as well as patient education on disease management (adherence to treatment, physical activity, and nutrition), group support, and identification of patients having similar troubles.3 After dinner, the children participated in fun games with educational purposes (e.g. treasure hunts, requiring basic knowledge of disease, treatment, and nutrition to receive the next hint). Patient 1, S.L., 6 years old, diagnosed with CF by neonatal screening, attended the first camp. His genotype is F508del/F508del. He is affected by pancreatic insufficiency and colonized by Staphylococcus aureus. His FEV1 before the camp was 98%pred. The second summer camp included 26 patients from 11 to 16 years of age and was based on horse-riding lessons and swimming pool activities during the day and psychological sessions after dinner. Even if this camp is based on psychosocial and emotion awareness, disease management and education is still a major goal of the event. Patient 2, C.A., 13 years old, diagnosed with CF by neonatal screening attended the second camp. Her genotype is genotype f508del/I1005R. She is affected by pancreatic insufficiency and Cystic Fibrosis Related Diabetes (CFRD) (diagnosed <1 year ago). She also is colonized by S. aureus. Her FEV1 was 122%pred. At the beginning of the camp, our perception was that the two CF patients felt different and somewhat excluded; however, as the days went by, not only did the sense of acceptance grow, the children helped each other reciprocally: coughing and huffing was no longer suppressed by the patient but encouraged by his/her companions. Our goals were to create friendly relations and modeling of life situations such as cooperation and competition in the group, as well as rehabilitation and recreation.4 In the case of the adolescent affected by CF and CFRD, this camp helped accept her new complication of CFRD. As for the younger child with CF, who had separation anxiety, he managed to cope in the camp with the support of the other children. Regarding the two CF patients’ mental health, we registered great satisfaction and fulfillment of their expectations, which were very high. These data emerged from the elaboration of psychological tests (Cystic Fibrosis Questionnaire [CFQ-R]) administered to the two patients as per usual. We measured the quality of life through the administration of the CFQ-R before and after the camp. We observed an increase in some quality-of-life domains, in particular the CF adolescent patient reported different scores before the camp, at the baseline visit, (V0), and after the camp (V1), related to the following dimensions (Supporting Information: Table): Physical (V0:70.8; V1:79.2) Health perception (V0:22.2; V1:33.3), Body image (V0:66.7; V1:88.9), Social (V0:66.7; V1:77.8). The other dimensions investigated through the CFQ-R (vitality, emotion, eating, treatment burden, role, weight, respiratory, digestion) remained stable, reporting the same values at V0 and V1, and no lower scores were registered at V1. In relation to the CF child, we administered the CFQ-R to the patient and to his mother, observing an increase from V0 to V1, for the following dimensions of the child: Emotion (V0: 83.3; V1:87.5), Social (V0:47.6; V1:52.4), Treatment burden (V0:33.3; V1:44.4). The quality of life perceived by the mother related to her son increased relatively to: Emotion (V0:60; V1:80), Vitality (V0:60; V1:80), School (V0:66.7; V1:88.9), Body image (V0: 77.8; V1: 100), Treatment burden (V0:33.3; V1:55.6). The other parameters evaluated for the quality of life are the same at V0 and at V1, both for the child (physical, eating, body image, treatment burden, respiratory, digestion) and his mother (physical, eating, health perception, respiratory, digestion, weight). We were gratified by these results, which however imply also some management issues, as the CF patients expressed their aspiration to attend the camp again next year. However, as we want to give this same opportunity to other patients and only one CF person per group is allowed, the same patients won't be able to repeat this experience the following years. We would like to guarantee this experience to other children followed by our CF center. Our aim is to continue to strengthen the bond between the two groups of patients and explore more strategies to make this one-off experience a reality not only in our center but nationwide, and perhaps even worldwide. Another goal is to share our idea and it's benefits we found, to gain the support of scientific CF societies. To conclude, we noticed a remarkable improvement from a psychological point of view, which was also supported by the questionnaires administered to our patients. From a clinical point of view, after this experience the child coughs and huffs with more confidence and the adolescent has now placed a continuous glycemic monitoring sensor, thanks to a better acceptance of her disease. Our goal is to determine more rigorously the efficacy of these camps in improving treatment adherence and overall health status, in a larger number of children. Throughout the years, summer camps for CF have been closed worldwide due to the high risk of cross-infection. Many authors believe that the reinstitution of summer camps should be considered, given the various benefits demonstrated. Our Cystic Fibrosis Unit and Diabetes Centre of the Giannina Gaslini Institute in Genoa, Italy, have started experimenting an innovative and inclusive program that consists of mixed educational camps that include diabetic patients and one CF patient. Preliminary data show a remarkable psychological and clinical improvement and one of our goals is to diffuse our idea and experience as much as possible and gain the support of scientific CF societies (Figure 1). Marina F. Strati, Marta Bassi, and Rosaria e Casciaro conceptualized and edited the manuscript. Rita Pescini and Riccardo Ciprandi collected, analyzed, and interpreted data. Federico Cresta and Rosaria e Casciaro critically revised the manuscript and contributed to final revision. CarloCastellani, Nicola Minuto, and Giuseppe d'Annunzio critically revised and supervised the manuscript. All authors have read and agreed to the published version of the manuscript. We would like to thank the Juvenile Diabetes Association of Genoa (Associazione Diabete Giovanile Genova) and the Italian Cystic Fibrosis Federation (Lega Italiana Fibrosi Cistica) for supporting us in this experience. None. The authors declare no conflict of interest. Informed written consent was obtained for the publication of photographs. The data that support the findings of this study are available in the Supporting Information of this article. Please note: The publisher is not responsible for the content or functionality of any supporting information supplied by the authors. Any queries (other than missing content) should be directed to the corresponding author for the article.