Objectives: Children with cancer often experience sleep problems, which are associated with many negative physical and psychological health outcomes, as well as with a lower quality of life. Therefore, interventions are strongly required to improve sleep in this population. We evaluated interactive education with respect to sleep hygiene with a social robot at a pediatric oncology outpatient clinic regarding the feasibility, experiences, and preliminary effectiveness. Methods: Researchers approached children (8 to 12 years old) who were receiving anticancer treatment and who were visiting the outpatient clinic with their parents during the two-week study period. The researchers completed observation forms regarding feasibility, and parents completed the Children’s Sleep Hygiene Scale before and two weeks after the educational regimen. The experiences of children and parents were evaluated in semi-structured interviews. We analyzed open answers by labeling each answer with a topic reflecting the content and collapsed these topics into categories. We used descriptive statistics to describe the feasibility and experiences, and a dependent-samples t-test to evaluate the preliminary effectiveness. Results: Twenty-eight families participated (58% response rate) and all interactions with the robot were completed. The children and parents reported that they learned something new (75% and 50%, respectively), that they wanted to learn from the robot more often (83% and 75%, respectively), and that they applied the sleeping tips from the robot afterwards at home (54%). Regarding the preliminary effectiveness, children showed a statistically significant improvement in their sleep hygiene (p = 0.047, d = 0.39). Conclusions: Providing an educational regimen on sleep hygiene in a novel, interactive way by using a social robot at the outpatient clinic seemed feasible, and the children and parents mostly exhibited positive reactions. We found preliminary evidence that the sleep hygiene of children with cancer improved.
1 October 2019 in Journal of Adolescent and Young Adult Oncology
Purpose: Adolescents with cancer (aged 12–18 years) are at risk for impaired health-related quality of life (HRQoL). Little is known about this population during treatment. This study aimed to (1) determine the HRQoL of adolescents with cancer during the first year of treatment and compare them with age-matched peers and (2) obtain insight into cancer-specific HRQoL of adolescents during the first year of treatment. Methods: Participants were part of a larger study focused on routine monitoring of electronic reported outcomes in standard pediatric oncology care. Adolescents completed the pediatric quality of life inventory (PedsQL) 4.0 and the PedsQL Cancer Module 3.0. Mean generic HRQoL scale scores were compared between the groups using multivariate analysis of covariance. Cancer-specific item scores were dichotomized and percentages were calculated to determine the proportion of adolescents reporting presence or absence of problems. Results: A total of 73 (mean [M]age = 14.71, standard deviation [SD] = 1.85) adolescents with cancer (Mage = 14.71, SD = 1.85, Mtimesincediagnosis = 3.51 months, SD = 2.8) and 268 healthy peers (Mage = 14.23, SD = 1.51) participated. Adolescents with cancer reported significantly lower generic HRQoL scores on all domains than their peers (p's <0.05, η2 = 0.01–0.42). Most frequently reported cancer-specific HRQoL problems were pain (hurt joint/muscle, 42.9%), nausea (during medical treatments [47.1%]; food not tasting good [54.3%]; food and smells [61.4%]), worry (about relapse [45.7%]; about side effects [52.9%]), cognitive problems (paying attention [47.1%]), and physical appearance (not good looking [47.1%]). Conclusions: Adolescents with cancer showed impaired HRQoL during treatment on both physical and psychosocial domains. Close monitoring of physical and psychosocial symptoms during treatment is, therefore, important.
1 April 2022 in Journal of Psychosocial Oncology Research and Practice
Background: We aimed to describe the opinions of health care providers in pediatric oncology regarding social robots and to examine differences in their opinions based on their background characteristics. Methods: Health care providers working in pediatric oncology care were approached globally to participate online in a cross-sectional questionnaire study with multiple choice and open-ended questions. Open-ended questions were coded and collapsed into categories by two researchers independently. Frequencies were used to describe the answers. Differences in opinions were studied using logistic regression analyses. Results: Health care providers’ (n = 286) first thoughts about social robots were mostly positive (81.0%). They saw value in social robots (83.6%), mostly during hospitalization or procedures and when used for distraction. They were willing to use one (67.8%), but also expected difficulties (67.1%), mainly concerning technical errors. Psychosocial staff members less often saw value in social robots, more often expected difficulties and were less willing to use a social robot than other health care providers (Ps < .05). No other differences were found. Conclusions: Social robots may be a promising addition to pediatric oncology care, since health care providers were generally positive about this innovation. However, psychosocial staff members seemed more reluctant. Important potential barriers were defined that should be addressed upon implementation.
Purpose: It is important to support families in dealing with the distress that comes along with the diagnosis and treatment of childhood cancer. Therefore, we developed a playful tool that families can use at home to support their family functioning and safeguard their normal family life. We pilot tested this new tool called Mr.V and describe how families used and evaluated the tool, and how it could be further improved. Methods: Mr.V is an interactive dispenser that looks like a spaceman and proposes family activities. These activities are suggested by family members themselves and dispensed by the machine at unexpected moments. Mr.V produced data on how it was used, and a questionnaire and a semi-structured interview were used to evaluate the experiences of families and the potential of this tool. Results: Ten families with a child with cancer between 5 and 9 years old (Mage = 6.7 years) who were in active treatment (mixed diagnoses) participated (n = 47; npatients = 10, nsiblings = 9, nparents = 16). All families used Mr.V for multiple days and were very satisfied with the tool regarding its acceptability, feasibility, and potential effectiveness. They also had suggestions on how the tool could be further improved. Conclusion: Mr.V is an acceptable and feasible tool that can be implemented by families independently at home, regardless of their level of need for support. Mr.V promoted family activities and therefore has the potential to support family functioning and normal family life at home. Future research should further investigate the effectiveness of this tool.
Few innovative treatments were developed for patients with non-rhabdomyosarcoma soft tissue sarcomas (NRSTS) in the past decades. The paper describes the OCTOPUS project (Optimising Combination Therapy fOr Paediatric, adolescent and yoUng adult patients with non-rhabdomyosarcoma soft tissue Sarcomas), a master protocol and includes an adaptive platform trial comprising different sub-trials, a real-world data registry, translational studies, and overarching study questions assessing local therapy issues and patient reported outcome measures (PROMs). The OCTOPUS consortium will provide an operational framework including a legal consortium structure, a network of national coordinating centres (NCCs) and sites within the EpSSG (European paediatric Soft tissue sarcoma Study Group) and ITCC (Innovative Therapies for Children and adolescents with Cancer) network. The overarching aim of the platform is to improve outcome and quality of life for patients with NRSTS by providing access to innovative treatments. Every sub-trial will have a unique design, tailored to the needs of the patients, the characteristics of the disease, and the stage of development of the experimental compound(s). Depending on the medical need in a specific patient population and the expected activity of a compound (or a combination), the innovative treatment(s) will be offered to patients with relapsed/refractory disease or placed in frontline treatment when appropriate.