Decisional conflicts, anxiety, and perceptions of shared decision-making in cancer treatment trajectory among adolescents with cancer: A longitudinal study.

PURPOSE: To examine the trajectory of decisional conflict and anxiety experienced by adolescents after the cancer diagnosis, and explore their perceptions on participation in shared decision-making (SDM). DESIGN: This longitudinal study used incorporated data from questionnaires and interviews. METHODS: Participants recruited from an academic hospital in southern Taiwan ranged in age from 13 to 20 years with a cancer diagnosis within 1 month and received cancer treatment. Each participant completed questionnaires on decisional conflict and anxiety at diagnosis, 1, 3, and 6 months later. Individual interviews were to gain an in-depth understanding of SDM. FINDINGS: Total scores on decisional conflict changed significantly over time (F = 2.98, p = 0.039); the scores at 1 month were higher than 3 months (t = 2.18, p = 0.04) and 6 months (t = 2.97, p = 0.008). Participants perceived significantly different levels of values clarify (F = 9.49, p < 0.01) and support (F = 8.46, p < 0.01) over time. Only 27.3% of participants were anxiety-free. No significant differences were found in anxiety over time. The perception of SDM was a situational involvement. CONCLUSIONS: Decisional conflict changed over time. Participants experienced greater decisional conflict at 4-8 weeks after diagnosis and their anxiety did not decrease over time. The different levels of participation in SDM during their treatment trajectory were found. CLINICAL RELEVANCE: Participants experienced the highest decisional conflict during diagnosis, and highlighted how their roles in healthcare discussions varied from direct participation to indirect involvement. Further research is needed to develop an SDM model which accommodates different levels of needs and implements timely support.

Interventions to Support Adolescents With Cancer in Decision-Making: A Systematic Review and Meta-Analysis.

BACKGROUND: Adolescents have autonomous views and participatory rights. There is increasing support for involving adolescents with cancer in the healthcare decision-making process. AIMS: The purpose of this study was to synthesize current knowledge to identify major components and outcomes of interventions to enhance shared decision-making (SDM) by adolescents with cancer during and after treatment. METHODS: Six electronic databases (PubMed, CINHAL, MEDLINE, Cochrane, EBSCO, and Web of Science) were searched from their inceptions to February 2020. Eligibility criteria were intervention studies, studies of interventions to support adolescents with cancer involved in SDM, and studies of patients diagnosed with cancer between 10 and 18 years of age. Data extraction and quality appraisal were conducted by using a standardized data extraction form. Quality appraisal was based on the Cochrane Risk of Bias Tool. RESULTS: Of 331 citations, five studies with a total of 648 participants aged between 13 and 21 years met inclusion criteria. Interventions included structured sessions held one to three times per week. SDM engagement strategies incorporated weekly assignments, live action videos, brochures, Five Wishes© advance directives, and follow-up counseling. Treatment preference congruence in adolescent and parent dyads was higher in intervention groups. Meta-analysis was performed on two studies and demonstrated statistically significant improvements in decision quality at 6 months (z = 3.37, p = .001; 95% CI = .174-.657) and 12 months (z = 3.17, p = .002; 95% CI = .150-.633) after SDM interventions in adolescent cancer survivors. No adverse events among patients were found, although anxiety scores increased in families in an intervention group. LINKING EVIDENCE TO ACTION: This review identified essential components of SDM interventions. Our findings may guide the future design of interventions to support high-quality decision-making by adolescents with cancer. Coaching can educate adolescent cancer survivors on quality decision-making methods and can improve the quality of consequent decisions. More research is needed to determine outcomes of SDM interventions.

Plasma levels of IL-1ß and IL-37 in patients with severe haemophilia.

OBJECTIVE: Haemophilia A and B are disorders caused by the lack of clotting factors VIII and IX, respectively. Repeated bleeding into the same joint leads to haemophilic arthropathy (HA). Interleukin (IL)-1ß is responsible for the pro-inflammatory response and IL-37 is induced by IL-1ß stimuli to have an anti-inflammatory response and prevent uncontrolled inflammation and tissue damage. Our objective was to investigate plasma levels of IL-1ß and IL-37 in patients with severe haemophilia with different severities of HA. METHODS: Peripheral blood samples were collected from 14 patients with severe haemophilia A and 6 with severe haemophilia B, and 18 healthy individuals. Plasma levels of IL-1ß and IL-37 were detected by immunoassay, and severity of HA was evaluated using the Pettersson scoring system. Plasma levels of IL-1ß and IL-37 were analysed in patients with severe haemophilia grouped by Pettersson score and in healthy individuals. RESULTS: Plasma levels of IL-1ß and IL-37 were significantly higher in patients with severe haemophilia compared with healthy individuals and significantly lower in those with moderate to severe HA than in those with no or mild HA. CONCLUSIONS: Plasma levels of IL-1ß and IL-37 may be useful to track HA progression in patients with severe haemophilia.

Tailored education enhances healthy behaviour self-efficacy in childhood cancer survivors: A randomised controlled study with a 4-month follow-up.

This study was to evaluate the acceptability and effectiveness of a tailored education on healthy behaviour self-efficacy (HBSE) and health promotion lifestyle (HPL) for childhood cancer survivors. A two-group, randomised study with repeated measures was conducted in Taiwan. Participants were randomly assigned to receive six 45-60 min individual education and follow-up telephone counselling sessions (n = 34) or standard of care only (n = 35). Each participant was assessed with HBSE and HPL questionnaires and was evaluated at three time points (at baseline, and then 1 and 4 months after intervention). The attrition rate was 7.2%. HBSE and HPL scores increased across the three time points in the experimental group (all p < 0.05), except for the HBSE exercise subscale (p = 0.85). HBSE scores were significantly higher for the experimental group than for the control group after 4 months of intervention (F = 5.32, p = 0.02, η2  = 0.25). No significant improvements in HBSE were observed over time in the control group. The intervention was acceptable and effective in promoting HBSE in childhood cancer survivors. Further empirical work is needed to reveal the effects of the intervention over a longer period of time and to improve patient engagement in exercise.

Clinical Features and Genotypes of Patients with Hemoglobin H Disease in Taiwan.

BACKGROUND: The genetic background of patients with hemoglobin (Hb) H disease in Taiwan has been investigated; however, the clinical features and treatment outcomes were not reported. OBJECTIVE: To analyze the clinical features and genotypes of patients with HbH who reside in Taiwan. METHODS: We conducted a retrospective analysis of the clinical and molecular characteristics of 38 patients with HbH disease who were undergoing treatment at Kaohsiung Medical University Hospital, Taiwan. RESULTS: Initial Hb levels were lower and the numbers of patients requiring iron-chelation therapy were higher in the nondeletional HbH group than in the deletional HbH group (P <.05). Compared with the healthy population, the patients with HbH disease exhibited short body length, low body weight, and low body mass index (BMI). CONCLUSIONS: Patients with nondeletional HbH disease had lower Hb levels and a higher requirement for splenectomy and iron-chelation therapy than did those with deletional HbH disease. Also, growth status was compromised in patients with HbH disease.

Assessment of the effects of walking as an exercise intervention for children and adolescents with cancer: A feasibility study.

PURPOSE: To examine the effects of walking exercise on exercise tolerance, fatigue, sleep quality, and quality of life (QOL) for children and adolescents with cancer. METHODS: A 6-week walking exercise regimen was implemented in pediatric hematological and oncological wards and in clinics of a medical center in Taiwan. A 6-min walk test (6MWT), fatigue, sleep quality, and QOL were measured at baseline and for six subsequent weeks. RESULTS: Adherence to the walking exercise regimen was achieved by 72-89% of the participants in this study. Significant improvements in exercise tolerance were observed after two weeks and they continued through week 6 (F = 17.07, p < 0.001). Both cognitive fatigue and general fatigue were significantly improved after six weeks of walking exercise (t = 2.41, p = 0.02; t = 2.76, p = 0.01), while sub-scores for sleep/rest fatigue did not improve. No significant impact on sleep quality or QOL was observed. CONCLUSIONS: Walking exercise is a feasible and tolerable intervention that should be considered for children and adolescents with cancer. Here, a 6-week walking exercise regimen increased exercise tolerance and improved fatigue. We recommend that walking exercise should be promoted during hospitalization and at home to alleviate fatigue.