Impact of compounded drugs on the caregivers' burden of home therapy management in pediatric palliative care: A descriptive study.

BACKGROUND: Children with medical complexity need complex assistance, that considerably affects caregivers' quality of life. They often need multiple medications, with a consequent relevant risk of errors or poor compliance. Galenic (or compounded) drugs are blended in the pharmacy's laboratory worldwide according to different rules and tailoring the patient's needs. While their use may sometimes simplify these therapies, little is known about parents' attitude about this issue. AIM: This study aimed at investigating the complexity of the daily therapy management and exploring the parents' opinions about galenic compounds. DESIGN: Parents were interviewed by using a structured questionnaire. SETTING: Children followed by the Pediatric Palliative Care Network in Friuli Venezia Giulia, Italy, were included from November 2021 to April 2022. Those diagnosed with malignancies were excluded, since therapies are mainly administered through a central venous catheter. RESULTS: Thirty-four parents were interviewed. Fourteen patients took drugs orally, one via nasogastric tube (NGT), 18 via gastrostomy, and one orally + NGT. The mean number of drugs taken every day was six (2-14), in mean 10 (3-18) administrations, that overall required a mean of 44 (8-180) minutes to be delivered. Twenty-eight parents used galenic compounds, and 24 reported relevant advantages, because of a ready-to-use and safe formulation. CONCLUSIONS: The therapy management of children with medical complexity relies on parents. Galenic compounds may improve both patients' and caregivers' quality of life, either in terms of shorter time of administration or smaller risk of errors. Therefore, their use should be encouraged worldwide, according to the different reference rules.

The ongoing impact of Covid-19 pandemic on children with medical complexity: the experience of an Italian pediatric palliative care network.

BACKGROUND: Italy was the first European country to experience a massive outbreak of Sars-coV-2 in March 2020. Severe measures were introduced to face the pandemic, significantly impacting all healthcare services, including pediatric palliative care (PPC) networks. We investigated how the Covid-19 pandemic modified the provision of PPC services in Friuli Venezia Giulia, Italy. Both the acute and long-term impacts on the families were addressed. METHODS: We administered a retrospective three-sections online questionnaire to the eligible families assisted by our regional PPC network. Inclusion criteria were: child needing specialistic PPC, adequate knowledge of the Italian language, being in charge of the PPC regional network of Friuli Venezia Giulia from February 1, 2020. The three sections examined the same issues in different periods: the pre-covid period (until February 29, 2020), the lockdown period (March 1, 2020, to April 30, 2020), and the post-lockdown period (May 2021). RESULTS: Twelve patients were included. During the lockdown period, 54.6% of children had to stop physiotherapy sessions, while, among those who continued, 80.0% experienced a reduction in the sessions' frequency. In the post-lockdown period, 45.5% of children did not have physiotherapy as often as before the pandemic onset. Overall, the access to medical visits during the lockdown and after its end was significantly reduced (p = 0.01). The level of support perceived by the families descended from grade 3 (intermediate) in the pre-covid period to 2 (low) during the lockdown (p < 0.05) and returned to grade 3 in the post-lockdown period. CONCLUSION: The COVID-19 pandemic and the related restrictions impacted the families and caused a transitory contraction of the perceived support. The most significant change was reduced access to medical visits and physiotherapy, which lasted over a year after the start of the pandemic.

Adolescents with chronic disease and social media: a cross-sectional study.

OBJECTIVE: This study aims to explore the attitude of adolescents with chronic diseases toward social media exposure, focusing in particular on Facebook. DESIGN: Cross-sectional study. SETTING: An anonymous semistructured survey was distributed to an Italian hospital-based cohort of adolescents with chronic disease to explore the role of Facebook in their daily life. PATIENTS: We recruited 212 adolescents (aged between 13 and 24 years) with a diagnosis of inflammatory bowel disease, coeliac disease, diabetes mellitus type 1 and cystic fibrosis. RESULTS: Two hundred and seven of the 212 (97.6%) expressed the need of sharing their illness experience with friends, 201 out of 212 (94.8%) usually searched information on the internet to find new therapies and to discover their prognosis. One hundred and forty-nine out of 212 adolescents (70.3%) perceived dependence on their parents as the most negative aspect of having a chronic disease, and 200 out of 212 (94.3%) were looking for friends with the same disease on Facebook. Two hundred and ten out of 212 (99.1%) did not want their doctors or nurse on their social media platforms. During the active disease periods, the time spent with social media increased from an average of 5 to 11 hours. CONCLUSIONS: This descriptive analysis focused on the Facebook impact on chronic disease perception among affected adolescents. It showed that they used to spend an increased amount of time on this platform during disease flare-up and highlighted their wish of keeping doctors and nurses away from their social dimension.