Introduction
Chronic diseases, after diagnosis, involve changes that have to favour coping with the new situation. The resources used will help control, manage and adapt to the disease. The psychological aspects may be influencing how the individual faces the situation.
Aim
To assess whether perceptions or beliefs and illness behaviour influence the choice of coping strategies for young and adult patients with haemophilia.
Methods
Multicenter cross‐sectional descriptive study. We recruited 63 patients with haemophilia A and B, adolescents, young and adults, and both types of treatment. A clinical and sociodemographic data sheet, the Coping Strategies Inventory (CSI), the Illness Perception Questionnaire‐revised (IPQ‐R) and the Illness Behaviour Questionnaire (IBQ) were used.
Results
Patients with haemophilia use appropriate coping strategies, both cognitive and behavioural. Most of them are on‐demand treatment, and despite arthropathy, they perceive good control of haemophilia. However, patients in prophylactic treatment are those employed more maladaptive coping strategies, less perception of control and hypochondriacal behaviour to the disease. The age variable may be relevant but we did not find significant differences.
Conclusions
Coping strategies used by patients with haemophilia are adequate. Although it is noted that the perception of the disease, its controllability or not, affects illness behaviour and consequently how coping with haemophilia. These are based on personal characteristics, cognitive and attitudinal dispositions that the individual consciously use to solve or face adverse situations. The analysis of coping styles of patients could be a tool for professionals to manage properly the disease.
Sports activity in children with hemophilia is associated with an improved quality of life and joint health. It is also associated with improved psychosocial wellness.
PurposeWe aimed to conduct a validation in Spanish of the Validated Hemophilia Regimen Treatment Adherence Scale – Prophylaxis (VERITAS-Pro) questionnaire for use in patients with hemophilia under prophylactic treatment.Patients and methodsThe VERITAS-Pro scale was adapted through a process of back translation from English to Spanish. A bilingual native Spanish translator translated the scale from English to Spanish. Subsequently, a bilingual native English translator translated the scale from Spanish to English. The disagreements were resolved by agreement between the research team and translators. Seventy-three patients with hemophilia, aged 13–62 years, were enrolled in the study. The scale was applied twice (2 months apart) to evaluate the test–retest reliability.ResultsInternal consistency reliability was lower on the Spanish VERITAS-Pro than on the English version. Test–retest reliability was high, ranging from 0.83 to 0.92. No significant differences (P>0.05) were found between test and retest scores in subscales of VERITAS-Pro. In general, Spanish patients showed higher rates of nonadherence than American patients in all subscales.ConclusionThe Spanish version of the VERITAS-Pro has high levels of consistency and empirical validity. This scale can be administered to assess the degree of adherence of prophylactic treatment in patients with hemophilia.
The Medtep Hemophilia online platform helped the studied patients with haemophilia to improve their adherence to prophylactic treatment, while increasing their QoL and illness perception, as well as joint arthropathies stabilization.
Haemophilia is a chronic disease that requires a multidisciplinary approach for proper management and control of its clinical manifestations. The perception and management of parents of children with haemophilia can be affected by stressful situations as a result of treatment or disease progression. The aim of this study was to evaluate the perception of stress and family functioning in parents of children with haemophilia 1-7 years. This is an observational clinical study involving 49 parents of children with haemophilia 1-7 years who attended the VIII Workshop for Parents of Children with haemophilia, organized by the Spanish Federation of Hemophilia in La Charca, Murcia (Spain). After obtaining parental consent, the questionnaires was applied to them, FACES III (family functioning) and Pediatric Inventory for Parents (perceived stress), and a record of data on the clinical characteristics and treatment. Significant differences in the perception of stressors by gender of parents were found. A family history of haemophilia, the use of port-a-cath, inhibitor development and gender of the parents were the descriptive variables most correlated with dependents variables. These variables, together with the type of haemophilia affect significantly in the parental stress and family functioning. Parents have difficulty adjusting to disease management, perceiving many stressors. Gender and family history, can hinder the proper compliance with treatments, reducing its effectiveness.
Haemophilia is a haematological disorder with an orthopaedic outcome. It requires not only medical but rather comprehensive care from infancy. The aim of this study was to assess the effectiveness of an educational intervention of Physiotherapy in parents of children with haemophilia under 4 years old. This is a non-randomized clinical trial, in which 22 parents participated children's with haemophilia under 4 years old. Half of them received an educational intervention of Physiotherapy. At the beginning and end of the study, a psychologist blinded to the assignment of subjects to each of the study groups, assessed the perceived quality of life, anxiety, perceived stress and family functioning of parents. A significant improvement was observed in the variables of perceived stress and family functioning of parents in the experimental group. The realization of an educational intervention in parents of children with haemophilia under 4 years old is effective. It reduces the stressors perceived by the parents and improves family cohesion and adaptability, as a consequence of the disease. It is necessary to carry out studies with follow-up periods to assess the effectiveness of educational programs of Physiotherapy for long term.
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