Quality of life, self-reported outcomes and impact of education among people with moderate and severe hemophilia A: An integrated perspective from a Latin American country.

Collecting and interpreting self-reported outcomes among people with hemophilia A supports the understanding of the burden of the disease and its treatment to improve holistic care. However, in Colombia, this information is limited. Therefore, this study aimed to describe the knowledge, perception and burden of hemophilia A from the patients' perspective. A cross-sectional study was conducted in the context of a hemophilia educational bootcamp held from November 29th to December 1st, 2019, in Medellin, Colombia. The bootcamp was organized by a hemophilia patient association responsible for contacting and inviting patients with hemophilia A (PwHA). Information on patients' health beliefs, treatment experiences, and health-related quality of life (HRQoL) was obtained through focus groups, individual interviews and the Patient Reported Outcomes, Burdens and Experiences (PROBE) questionnaire. A total of 25 moderate or severe PwHA were enrolled in this study and completed the PROBE questionnaire. Acute pain was the most frequently reported symptom, with 88% of the patients reporting the use of pain medication. Difficulty with activities of daily living was reported by 48%. Furthermore, 52% reported having more than 2 spontaneous bleeding events in the last year. Treatment was administered at home for 72% of patients, with regular prophylaxis as the most common treatment regimen. In terms of overall HRQoL, the median EQ-5D VAS score was 80 (IQR: 50-100). PwHA in Colombia still suffer from disease complications related to bleeding events, pain and disability that affect their HRQoL, which highlights the need to develop patient-centered initiatives to improve the wellness of this population.

Mindfulness Parenting and Childish Play: A Clinical Trial With Parents of Children With Autism Spectrum Disorders.

BACKGROUND: Problems of behaviour, communication, and social interaction associated with Autism Spectrum Disorders can overwhelm parents. Disturbances in parents' psychological well-being (anxiety, depression) affect adherence to treatment, making it less effective. There is a need to investigate how to increase psychological wellbeing in parents of children with autism. METHOD: An 8-week brief training programme using the Mindfulness Parenting (MP) intervention was applied to fourteen parents (6 couples and two mothers). Participants were assigned to one of two groups, both groups received the same treatment but at two different time points. Measures of anxiety (SCAARED), parental stress (PSI-4), autism severity level (AIM) and mindfulness awareness (FFMQ), were assessed. RESULTS: Analysis indicates that MP training increased mindfulness awareness, increasing non-judgment and reactivity, and consequently, reduced anxiety (parental, general, social), improving parent-child interaction. This improvement did not influence parents' perception of the severity of the disorder. CONCLUSIONS: The small number of participants precludes generalisation of the results. More clinical trials are needed to demonstrate the usefulness of including these programmes in early intervention services, as well as profiles of parents who may potentially benefit from it.

Mindfulness-Based Stress Reduction (MBSR) and Self Compassion (SC) Training for Parents of Children with Autism Spectrum Disorders: A Pilot Trial in Community Services in Spain.

This study aims to develop a clinical trial to test the efficacy of a mindfulness-based stress reduction (MBSR) and self-compassion (SC) program on self-reported values of anxiety, depression, and stress in parents of children with autism spectrum disorder (ASD) in primary school, in order to assess their integration into the framework of community intervention programs in Spain. METHODS: A brief 8-week training program using mindfulness-based intervention (MBSR) and self-compassion (SC) has been applied to twelve Valencian ASD parents, ten of whom completed the program. Participants were assigned to two groups; both groups received the same treatment but at two different measurement moments. Depression, anxiety, stress, satisfaction with life and mindful attention awareness measurements were performed, in all participants, in three testing stages. RESULTS: Analysis of variance results suggested that MBSR and SC training reduces stress and anxiety and increases mindful attention awareness. No significant changes were found in life satisfaction measurements. CONCLUSIONS: The small number of participants prevents us from generalizing the results found. More MBSR and SC clinical trials are needed in parents of ASD with results on anxiety, depression and stress in order to demonstrate the relevance of the inclusion of these programs in community-based early intervention services.