RESUMEN
Our study examined parenting stress and its association with behavioral problems and disease severity in children with problematic severe asthma. Research participants were 93 children (mean age 13.4 ± 2.7 years) and their parents (86 mothers, 59 fathers). As compared to reference groups analyzed in previous research, scores on the Parenting Stress Index in mothers and fathers of the children with problematic severe asthma were low. Higher parenting stress was associated with higher levels of internalizing and externalizing behavioral problems in children (Child Behavior Checklist). Higher parenting stress in mothers was also associated with higher airway inflammation (FeNO). Thus, although parenting stress was suggested to be low in this group, higher parenting stress, especially in the mother, is associated with more airway inflammation and greater child behavioral problems. This indicates the importance of focusing care in this group on all possible sources of problems, i.e., disease exacerbations and behavioral problems in the child as well as parenting stress.
Asunto(s)
Asma/complicaciones , Trastornos de la Conducta Infantil/complicaciones , Relaciones Padres-Hijo , Padres/psicología , Estrés Psicológico/psicología , Adolescente , Adulto , Asma/psicología , Niño , Trastornos de la Conducta Infantil/psicología , Femenino , Humanos , Masculino , Persona de Mediana Edad , Responsabilidad Parental/psicología , Índice de Severidad de la Enfermedad , SuizaRESUMEN
BACKGROUND: Mucopolysaccharidosis type III (MPS III, Sanfilippo syndrome) is a lysosomal storage disorder caused by a deficiency of one of the enzymes involved in the degradation of heparan sulfate. MPS III is characterized by progressive mental deterioration resulting in severe dementia. A number of potentially disease-modifying therapies are studied. As preservation of cognitive function is the ultimate goal of treatment, assessment of cognitive development will be essential in order to evaluate treatment efficacy. However, no large scale studies on cognitive levels in MPS III patients, using formal psychometric tests, have been reported. METHODS: We aimed to assess cognitive development in all 73 living patients with MPS III in the Netherlands. RESULTS: Cognitive development could be assessed in 69 patients. In 39 of them developmental level was estimated > 3 months and formal psychometric testing was attempted. A remarkable variation in the intellectual disability was detected. CONCLUSIONS: Despite special challenges encountered, testing failed in only three patients. The observed broad variation in intellectual disability, should be taken into account when designing therapeutic trials.
Asunto(s)
Cognición , Mucopolisacaridosis III/patología , Envejecimiento , HumanosRESUMEN
The purpose of this study was to test the feasibility and short-term outcomes of Asthma: It's a Family Affair!, a school-based intervention for adolescents with asthma and their caregivers. Twenty-four ethnic minority families with a middle school student with asthma were randomized to immediate intervention or no-treatment control. Intervention students received six group sessions on prevention and management of asthma. Caregivers received five group sessions teaching child-rearing skills to support the youth's autonomy and asthma self-management. All students attended all sessions; caregivers attended an average of three. Two months post-intervention, relative to controls, intervention caregivers reported better problem-solving with children. Intervention students were more responsible for carrying medication, took more prevention steps, and woke fewer nights from asthma. The intervention resulted in positive short-term changes in family relations, asthma management by students, and health status.
Asunto(s)
Asma/prevención & control , Cuidadores , Relaciones Familiares , Desarrollo de Programa , Población Urbana , Adolescente , Niño , Etnicidad , Estudios de Factibilidad , Femenino , Encuestas Epidemiológicas , Humanos , Masculino , Grupos Minoritarios , Aceptación de la Atención de Salud , Proyectos Piloto , Evaluación de Programas y Proyectos de Salud , Pruebas Psicológicas , Autocuidado , Encuestas y CuestionariosRESUMEN
This study describes a self-treatment program for parents of children with asthma. The aim was to prevent asthma exacerbations by learning to recognise prodromal signs and acting upon them by increasing inhaled corticosteroids (ICS). The study questions were: (1) can we teach parents and children to recognise prodromal signs? (2) are instructions to increase inhalation medication followed? (3) will frequency and severity of asthma attacks diminish subsequently? Due to physicians' changed attitude towards prescription of ICS, fewer children could be recruited who were "ICS-naive" than expected. Twenty-nine children of the age of 4-11 years with moderate asthma, participated in a one year prospective randomised study. Structured information was given to all patients on asthma, symptoms and medication. The experimental group received additional information on recognising prodromal signs and doubling ICS during one week. Only in 25% of the patients who recognised prodromal signs the dose of ICS was doubled (as prescribed), in 75% inadequately or not at all. Recognition of prodromal signs was poor as well as compliance to increase as-needed medication. No significant decrease of asthma symptoms occurred in the experimental group. Clinical implications are important for self-treatment instructions: an individually tailored and multi-component program should be offered by health care providers in order to help the patient to recognise early alarm symptoms, comply to self-treatment instructions and to make adaptations for continuous self-regulation.
Asunto(s)
Asma/tratamiento farmacológico , Glucocorticoides/administración & dosificación , Padres , Cooperación del Paciente , Educación del Paciente como Asunto , Administración por Inhalación , Niño , Preescolar , Femenino , Volumen Espiratorio Forzado/efectos de los fármacos , Glucocorticoides/farmacología , Humanos , Masculino , Estudios Prospectivos , Autocuidado , Método Simple CiegoRESUMEN
Many patients with asthma, diabetes, and heart failure do not succeed in integrating the required self-management behaviours into their lives, and fail to attain optimal disease control. The purpose of this study was to describe the development of a theory-driven intervention to enhance self-management that would be appreciated and accepted by participants and providers. Based on self-regulation theory and proactive coping, the program emphasised goal-setting and the planning of behaviour. In five 2h group sessions, participants first decided upon their own goal and behaviours they wanted to change. Next, they wrote an action-plan to implement these behavioural intentions. Behavioural rehearsal and self-monitoring took place between the sessions. Participants and nurse providers evaluated the intervention positively. Evaluations were unrelated to patients' health at baseline, or to feelings of self-efficacy regarding self-management. But patients of older age, lower education, or no current employment responded best to the intervention.
Asunto(s)
Actitud del Personal de Salud , Actitud Frente a la Salud , Enfermedad Crónica/rehabilitación , Educación del Paciente como Asunto/organización & administración , Autocuidado , Adaptación Psicológica , Adulto , Anciano , Asma/psicología , Asma/rehabilitación , Enfermedad Crónica/psicología , Diabetes Mellitus/psicología , Diabetes Mellitus/rehabilitación , Femenino , Objetivos , Insuficiencia Cardíaca/psicología , Insuficiencia Cardíaca/rehabilitación , Humanos , Masculino , Persona de Mediana Edad , Evaluación de Necesidades , Países Bajos , Personal de Enfermería en Hospital/psicología , Evaluación de Procesos y Resultados en Atención de Salud , Planificación de Atención al Paciente , Desarrollo de Programa , Evaluación de Programas y Proyectos de Salud , Autocuidado/métodos , Autocuidado/psicología , AutoeficaciaRESUMEN
The quality of life for respiratory illness questionnaire (QoLRIQ) is an outcome measure for patients with asthma or chronic obstructive pulmonary disease (COPD). This study assessed the longitudinal validity, reliability of the change score and the interpretation of changes on the QoLRIQ in inpatient pulmonary rehabilitation, completed by 108 patients with moderate to severe asthma (39) or COPD (69). Domains and total score of the QoLRIQ changed significant (all p < 0.0002) with standardized response means from 0.46 to 0.90. All QoLRIQ-change scores were significantly correlated with self-rated change in health and in disease symptoms and with change in self-assessed health status (r from 0.2 to 0.61). There were several significant correlations between QoLRIQ-change scores and change in experienced invalidity, emotional well-being, anxiety, depressive symptoms and Rand-36-domains (r from 0.2 to 0.68). The intraclass correlation coefficient of change was 0.90. The size of a minimal important difference (MID), computed from a retrospective global rating of change by the patients and with the standard error of measurement, was 0.5 points on a 7-point response scale. Computation of the MID from retrospective assessment of change may not be valid because this change was significantly correlated to post-treatment health status and significantly higher than serial assessment of change. We conclude that the QoLRIQ is sensitive to change, longitudinally valid and reliable, with a MID of 0.5 points. These results enable the use of the QoLRIQ as an outcome measure in clinical trials with patients with moderate to severe asthma or COPD. The longitudinal measurement properties in less severe patients still need to be studied.
Asunto(s)
Asma/fisiopatología , Enfermedad Pulmonar Obstructiva Crónica/fisiopatología , Calidad de Vida , Perfil de Impacto de Enfermedad , Encuestas y Cuestionarios , Adulto , Asma/psicología , Asma/rehabilitación , Femenino , Humanos , Pacientes Internos , Estudios Longitudinales , Masculino , Persona de Mediana Edad , Países Bajos/epidemiología , Enfermedad Pulmonar Obstructiva Crónica/psicología , Enfermedad Pulmonar Obstructiva Crónica/rehabilitaciónRESUMEN
An explanatory framework, referred to as the attitude/social influence/self-efficacy-model (ASE-model), was utilised to explain future self-reported adherence of adolescents to daily inhaled prophylactic asthma medication. The objective was to investigate the long-term influence of these earlier reported cognitive variables and other psychological and medical determinants on self-reported adherence 1 year later. Data were collected, via a questionnaire, from 86 adolescents with asthma (aged 11 through 18 years) recruited from outpatient clinics. Adherence was assessed by asking the patients to give themselves a report mark for adherence. The results of the multiple regression analyses showed that the three major ASE-variables were predictors of self-reported adherence to a moderate degree (R(2)=0.21). Previous self-reported adherence was found to be the best predictor of self-reported adherence to prophylactic asthma medication 1 year later (R(2)=0.45). The results of this study could be useful in the development of interventions to enhance adherence to asthma medication. In future, such interventions should focus on feelings of shame about having asthma and promoting healthy habits, such as adherence to medication.
Asunto(s)
Antiasmáticos/uso terapéutico , Asma/tratamiento farmacológico , Asma/psicología , Cooperación del Paciente/psicología , Adolescente , Actitud Frente a la Salud , Femenino , Humanos , Masculino , Modelos Psicológicos , Autoeficacia , Vergüenza , Factores Socioeconómicos , Estadística como Asunto , Encuestas y CuestionariosRESUMEN
PURPOSE: Assessment of the patient's view of outcome should complement standardized evaluation methods, especially in multi-intervention rehabilitation programs. Assessment of individualized outcomes has not been used previously in pulmonary rehabilitation studies. Therefore, the authors developed a method for assessing the patient's view of outcome. METHODS: Patients and their therapists scored the subjective attainment level of individualized treatment goals on a 6-point response scale. Mean attainment scores, sensitivity to change, reliability, and validity were computed. RESULTS: The study found that 79 patients (20 with asthma and 59 with chronic obstructive pulmonary disease) who participated in an inpatient pulmonary rehabilitation program had 540 treatment goals (range 2-12 goals per patient). The patients had a significantly higher median attainment score than the main therapists (5 versus 4; n = 286; P <.0001). Sensitivity to change of the attainment scores from patients was very high. The patients (n = 42) had a standardized response mean of 3.57 for the attainment scores, as compared to 1.01 for the total score of the Quality of Life for Respiratory Illness Questionnaire. Attainment scores of treatment goals with at least 10 occurrences were significantly correlated with closely related external outcomes. Interrater agreements between patients and therapists as well as among therapists were low (weighted kappa < 0.35). CONCLUSIONS: The patient's view was used to describe the outcome of inpatient pulmonary rehabilitation. Attainment scoring has a high sensitivity to change and a satisfying validity. The low reliability between the individual's point of view and that of the therapist necessitates a clear description for the different levels of expected outcome. The individualized goal attainment method seems to be a promising complementary way of evaluating pulmonary rehabilitation.