Nonpharmacological treatment for coping with pain.

Pain is one of the most common reasons for consultation and one of the most difficult tasks to handle for doctors. If it is chronic, the frequency of disorders increases associates that we cannot exclude from the treatment, and further complicates your treatment. The Asociation International Association for the Study of Pain (IAPS)1 defines the pain as "a sensory and emotional experience unpleasant associated with actual or potential tissue damage, or described in terms of such damage". So the pain is not only a nociceptive experience, but also involves emotional and subjective components, considering that It can even occur without a somatic cause justify. Its nature is complex, including factors biological and others such as subjective experience, education and emotion. Therefore pain is a personal, multidimensional problem, unique experience and non-transferable of the person who suffers it. Being a pharmacological and non-pharmacological approach is necessary for its management.

Quality of Life, Perception of Disease and Coping Strategies in Patients with Hemophilia in Spain and El Salvador: A Comparative Study.

BACKGROUND: Hemophilia is characterized by the development of joint bleeds that cause long-term joint damage (hemophilic arthropathy). Joint damage leads to disability and affects psychosocial aspects in patients with hemophilia. OBJECTIVE: To compare the clinical situation, perception of disease and quality of life, and coping strategies in adult patients with hemophilia in El Salvador and Spain. METHODS: In this comparative clinical study, 43 patients with hemophilia aged between 18 and 50 years old from Spain and El Salvador participated. After obtaining the patients' consent, they completed the Illness Perception Questionnaire-Revised (IPQ-R), Hemophilia-QoL and Inventory of Coping strategies questionnaires. Joint status was assessed using the Hemophilia Joint Health Score and based on a record of clinical and treatment data. RESULTS: Hemophilia patients from Spain showed an improved perception of quality of life (p <0.05), although there were only differences in the self-criticism variable (p = 0.04) for coping strategies. Joint damage and age correlated (p <0.05) negatively with perception of disease, perceived quality of life and coping strategies in both populations. There were differences (p <0.05) between the two populations based on HIV and HCV coinfections in perception of disease and perceived quality of life. CONCLUSION: Patients with hemophilia in El Salvador exhibit a poorer perception of disease and quality of life. Despite differences in access to treatment from one country to the other, there is no difference in coping with the disease. Older patients are better able to adapt to the disease.

Validation of the Spanish Version of the VERITAS-PRN Scale to Assess Adherence to on Demand Regimens in Patients with Hemophilia.

INTRODUCTION: The episodic or on-demand administration of clotting factor concentrates in hemophilia patients in the event of hemorrhage is employed to restore hemostasis. Adherence to on-demand treatments needs to be assessed in order to improve patient management, avoiding adverse effects and serious clinical complications. AIM: To validate the Spanish version of the treatment adherence scale in patients with hemophilia, namely, Validated Hemophilia Regimen Treatment Adherence Scale-PRN (VERITAS-PRN). METHODS: Eighty-five patients were recruited in three hemophilia patient associations in Spain. The VERITAS-PRN scale was adapted through a back-translation process from English to Spanish. A native Spanish bilingual translator translated the scale from English to Spanish, and subsequently another native English bilingual translator translated the scale from Spanish to English. The scale was applied twice (two months apart) to assess test-retest reliability. RESULTS: Internal consistency reliability was slightly lower in the VERITAS-PRN in Spanish (0.80) versus the English version (0.85). There were no differences (p > 0.05) between the means of the dimensions or in the total scores between the sample of patients in Spain and the USA. The test-retest reliability coefficient of the scores on the total scale was 0.80 [CI, 0.74-0.86]. The test-retest reliability coefficient was greater than 0.90 in all subscales. CONCLUSION: The Spanish version of VERITAS-PRN has high consistency and empirical validity. This scale is useful for assessing the degree of adherence to treatment in adult patients with hemophilia following episodic infusion treatment.

Hemophilia carriers: quality of life and management at different life stages.

The carrier testing, genetic counseling and prenatal diagnosis have become an integrated part of the comprehensive care for hemophilia, but quality of life and management of carriers frequently remain suboptimal. It is paramount to evaluate the physical and psycho-social impact of them as problematic physical, psychological and social situations are not uncommon. There are to instruct them about their hemorrhagic possible symptoms and condition for offering solutions that meet their needs and help them enjoy a satisfactory quality of life in all life stages.

Haemo-Adhaesione: A New Measure of Adherence for Adolescent and Adult Patients with Haemophilia.

PURPOSE: To build a multidimensional questionnaire of adherence for a patient with hemophilia that includes not only clinical but also psychosocial aspects. PATIENTS AND METHODS: One hundred and forty-six patients with haemophilia (A and B) were recruited from several Hemophilia Treatment Centers for this study. The recruitment was performed through a personal interview (20-25 mins for each patient). A literature review was carried out (different databases). In the first version (136 items), all items were subjected to an external judgment (experts in hemophilia) and also presented and discussed with a group of patients. It was made a study of content validity and homogeneity index and reliability coefficients of score were calculated with an alpha coefficient. Empirical validation was made with Pearson correlation. RESULTS: The Haemo-Adhaesione scale was composed of 5 dimensions and 10 questions about basic haemophilia concepts. It was shown to be valid and reliable to assess adherence in the Spanish population. Its internal consistency was good in all dimensions. The Rasch model was used to confirm the multidimensional structure of the scale. Significant and negative correlations were observed with the VERITAS-Pro and VERITAS-PRN scale in all dimensions, and in the total score. CONCLUSIONS: The Haemo-Adhaesione scale is a good measure of adherence for PWH. Its multidimensional structure favors the inclusion of the objective and subjective aspects implicit in its definition, as well as its dynamic nature. Patients with greater adherence are those who have more awareness of their disease, and as a result, they are more compliant with prescription and their self-care. It also discriminates between patients who follow one treatment or another.

Adherence to prophylactic treatment.

: Prophylaxis has helped improve patients' perception of their quality of life, enabling them to lead a more normal life. For these reasons prophylactic treatment is nowadays considered a gold standard in the treatment of severe hemophilia A or B. Despite its benefits in terms of preventing bleeding and preserving patients' health, this intensive treatment is not always adhered to by patients with hemophilia - promotion of adherence should involve a multidisciplinary team which addresses not only the clinical aspects of a condition but also the different psychosocial aspects affecting patients and their (social, family and healthcare) environment.

Coping strategies in young and adult haemophilia patients: A tool for the adaptation to the disease.

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.

Parental eating disorders symptoms in different clinical diagnoses / Síntomas parentales de trastornos de la conducta alimentaria en distintos diagnósticos clínicos

BACKGROUND: The influence of parents can be an important variable in the development of eating disorders (EDs). However, few studies exist which simultaneously assess parents and their children, especially in different clinical groups. METHODS: Our study examines the differences in ED symptoms as measured on the Eating Disorder Inventory (EDI), in parents and their children as patients with anorexia nervosa (AN), bulimia nervosa (BN), unspecified eating disorder (UED) and a control group (CG). RESULTS: The mothers in the clinical group scored higher in ineffectiveness, interoceptive awareness, maturity fears, social insecurity and impulse regulation than the mothers in the control group. The patients' fathers scored higher on impulse regulation than those in the control group. In addition, the fathers of patients in the BN group scored higher than the fathers of patients in the UED group in body dissatisfaction. They also scored higher in impulse regulation than the fathers of patients with AN. Ineffectiveness and impulse regulation were the variables in which patients' scores were most similar to their parents. CONCLUSIONS: These results show the presence of ED psychological variables in both parents, not just mothers. Prevention and intervention activities for eating disorders must be designed to also give an active role to the father

ANTECEDENTES: la influencia parental puede ser un importante factor en el desarrollo de los trastornos de la conducta alimentaria (TCA). Sin embargo, existen muy pocos estudios que evalúen de forma simultánea a ambos progenitores (padre y madre), así como a sus hijos y, de forma específica, que comparen grupos con diferentes diagnósticos clínicos. MÉTODO: este estudio analiza diferencias en síntomas de TCA medidos mediante el Eating Disorder Inventory 2 (EDI-2), tanto en padres como madres y sus respectivos hijos. Éstos se dividieron en: pacientes con diagnóstico de anorexia nerviosa (AN), bulimia nerviosa (BN), trastorno de la conducta alimentaria no especificado (TCANE) y grupo control (GC). RESULTADOS: las madres de los grupos clínicos puntuaron más alto en ineficacia, consciencia introceptiva, miedo a la madurez, inseguridad social e impulsividad en comparación con las madres del grupo control. Ineficacia e impulsividad fueron las variables con mayor coincidencia entre pacientes y sus progenitores. CONCLUSIONES: estos resultados ponen de manifiesto la presencia de variables de funcionamiento psicológico que podrían estar asociadas con TCA también en padres de pacientes. De esta forma, las actividades de intervención en estos pacientes deberían diseñarse para otorgar un papel activo no solo a las madres sino también a sus padres

Parental eating disorders symptoms in different clinical diagnoses.

BACKGROUND: The influence of parents can be an important variable in the development of eating disorders (EDs). However, few studies exist which simultaneously assess parents and their children, especially in different clinical groups. METHODS: Our study examines the differences in ED symptoms as measured on the Eating Disorder Inventory (EDI), in parents and their children as patients with anorexia nervosa (AN), bulimia nervosa (BN), unspecified eating disorder (UED) and a control group (CG). RESULTS: The mothers in the clinical group scored higher in ineffectiveness, interoceptive awareness, maturity fears, social insecurity and impulse regulation than the mothers in the control group. The patients’ fathers scored higher on impulse regulation than those in the control group. In addition, the fathers of patients in the BN group scored higher than the fathers of patients in the UED group in body dissatisfaction. They also scored higher in impulse regulation than the fathers of patients with AN. Ineffectiveness and impulse regulation were the variables in which patients’ scores were most similar to their parents. CONCLUSIONS: These results show the presence of ED psychological variables in both parents, not just mothers. Prevention and intervention activities for eating disorders must be designed to also give an active role to the father.

Analysis of the familiar psychopathology as a therapeutic tool / Análisis de la psicopatología familiar como herramienta terapéutica

The objective of this study is to find out the degree of psychopathology which patients with an eating disorder present (ED) and to which degree this is accompanied by the presence of psychopathology in mothers and fathers of patients. Three groups of patients with Anorexia Nervosa (AN), Bulimia Nervosa (BN), and eating disorders not otherwise specified (EDNOS) and a control group were selected. Each group had 30 participants (and mothers and fathers). A socio-demographic questionnaire and the SCL-90-R were applied. This scale measured nine dimensions of psychopathology in patients, mothers and fathers. An ANOVA of partially repeated measures with two factors was applied to each dimension of SCL- 90-R. Multiple comparisons between groups within each of the repeated measures were carried out with Sidak test. Patients in three clinical groups obtained significant differences in all psychopathological variables compared with the control group, except in phobic anxiety. These clinical results were accompanied by some degree of psychopathology in mothers but not fathers. The presence of high levels of psychopathology in the three groups of patients and mothers has therapeutic implications that indicate the need for psychological intervention in patients and their mothers (AU)

El objetivo de este estudio es averiguar el grado de psicopatología que presentan los pacientes con un Trastorno de la Conducta Alimentaria (TCA) y en qué grado está acompañado por la presencia de psicopatología en madres y padres de los pacientes. Se seleccionaron tres grupos de 30 pacientes cada uno con Anorexia Nerviosa, Bulimia Nerviosa y TCA No especificado y un grupo control (y sus madres y padres). Se aplicó un cuestionario socio-demográfico y la escala SCL-90-R que mide nueve dimensiones de psicopatología de pacientes, madres y padres, en los cuatro grupos. El análisis de datos se realizó con una ANOVA de dos factores con medidas parcialmente repetidas en cada subescala de la SCL-90-R. Las comparaciones múltiples entre los grupos dentro de cada medida repetida se realizaron con la prueba de Sidak. Los pacientes de los tres grupos clínicos obtuvieron diferencias significativas en todas las variables psicopatológicas frente al grupo control, menos en ansiedad fóbica. Este cuadro clínico fue acompañado por cierto grado de psicopatología de las madres pero no de los padres. La presencia de altos niveles de psicopatología en los tres grupos de pacientes y en las madres tiene implicaciones terapéuticas que marcan la necesidad de la intervención psicológica en las pacientes y en sus madres (AU)

Validation of the VERITAS-Pro treatment adherence scale in a Spanish sample population with hemophilia.

PURPOSE: We 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 METHODS: The 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. RESULTS: Internal 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. CONCLUSION: The 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.

Effectiveness of an Educational Physiotherapy and Therapeutic Exercise Program in Adult Patients With Hemophilia: A Randomized Controlled Trial.

OBJECTIVE: To assess the efficacy of an educational physiotherapy home exercise intervention for physical improvement, pain perception, quality of life, and illness behavior in patients with hemophilic arthropathy. DESIGN: Single-blind randomized controlled trial. SETTING: Home. PARTICIPANTS: Patients with hemophilia (N=20) were randomly allocated to an educational intervention group or to a control group. INTERVENTIONS: The educational intervention was performed every 2 weeks over a 15-week period, and home exercises were carried out once a day, 6 days a week, over the same period. MAIN OUTCOME MEASURES: Joint status was evaluated using the Gilbert scale; pain was assessed using the visual analog scale; illness behavior was evaluated using the Illness Behavior Questionnaire; and the perception of the quality of life was evaluated using the A36 Hemophilia-QoL questionnaire. RESULTS: We observed significant differences in the intervention group and the control group for both quality of life and illness behavior. There was no significant improvement in joint status; however, an improvement was noted in terms of perception of pain in the ankle. CONCLUSIONS: A physiotherapy program based on educational sessions and home exercises can improve the perception of pain in patients with hemophilic arthropathy of the ankle. It improves some variables in the perception of the quality of life and illness behavior.

Sporting Activities and Quality of Life in Children With Hemophilia: An Observational Study.

INTRODUCTION: Sports activities are part of multidisciplinary treatments in people with hemophilia. AIM: The objective of this study was to assess the incidence of sports activities in the quality of life as perceived by children with hemophilia. METHODS: A total of 53 children with hemophilia aged 7 to 13 years and 51 children without hemophilia were evaluated. The perception of quality of life, clinical variables, and the frequency of sports activities were registered. The joint condition of patients with hemophilia was measured with the Spanish version of the Haemophilia Joint Health Score. RESULTS: There were no significant differences in the perception of quality of life between children with hemophilia and children without hemophilia. Sports activities in people with hemophilia promoted a greater health satisfaction. CONCLUSIONS: 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.