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In dit artikel worden zelfmanagement en therapietrouw beschreven: twee belangrijke determinanten voor het adequaat omgaan met een chronische aandoening, waarbij zowel de arts als de patient een actieve rol speelt. Een zelfmanagementprogramma is een begeleidingsprogramma als aanvulling op de medische behandeling, dat tot doel heeft om het kind (c.q. de ouders) op zodanige wijze te activeren dat hij of zij zelf optimaal in de behandeling participeert. De mate van therapietrouw is eveneens bepalend voor het onder controle houden van een chronische aandoening. Bij therapieontrouw wordt de medische behandeling ondermijnd en kunnen zowel patient als behandelaar ontmoedigd raken. Determinanten van therapieontrouw en praktische aanwijzingen ter bevordering van de therapietrouw worden beschreven. De nadruk ligt hierbij op de wisselwerking tussen behandelaar en patient. Ook bij de behandelaar zou men van therapieontrouw kunnen spreken, namelijk indien hij onvoldoende aandacht besteedt aan de beweegredenen van therapieontrouw bij de patient. Ten slotte worden enkele voorbeelden van psychologische interventieprogramma’s beschreven die tot doel hebben om acceptatie, zelfmanagement of therapietrouw te bevorderen of de impact van de ziekte op de sociaal-emotionele ontwikkeling te verkleinen.

Despite intensive outpatient care and optimized medical treatment, some patients with chronic illnesses experience prolonged difficulties in the self-management of their illness and fail to attain optimal disease control. The present study describes the effects of an intervention programme aimed at improving self-management and quality of life among patients with asthma and diabetes. The intervention was based on insights from self-regulation theory and proactive coping theory. Patients with asthma ( N = 70) and diabetes ( N = 55) were randomly assigned to an intervention group or control group ( standard care). In addition to a conventional pre-test-post-test-follow-up design, the then-test methodology was employed to examine the effects on quality of life. The present study showed no intervention effects on self-efficacy, self-care activities or proactive coping. The same was true for quality of life when measured with the conventional design. However, positive intervention effects for asthma patients were found on global quality of life and physical health when measured with the then-test procedure. These results accentuate the value of including then-tests when measuring intervention outcomes. Additional subgroup analyses showed that patients who scored relatively high on

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.

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.

patient'spatient'sviewof outcome inpulmonary rehabilitation 14557.11 Abstract Purpose:Purpose:Assessmentofthepatient'sviewofoutcomeshouldcomplementstandardizedevaluationnmethods,especiall yi nmultiinterventio nrehabilitationprogrammes.Assessmentoffindividualizedoutcomeshasnotbeenusedpreviouslyinpulmonaryrehabilitationstudies..Thereforew edevelopedamethodforassessingth epatient'sviewofoutcome.Methods:Methods:Patientsandtheirtherapistsscoredthesubjectiveattainmentlevelofindividualizeddtreatmentgoalsonasixpointresponsescale.Meanattainmentscores,sensitivityyt ochange,reliabilityandvaliditywerecomputed.Results:Results:79patients(20wit hasthmaand59withchronicobstructivepulmonarydisease)whooparticipatedi na ninpatien tpulmonaryrehabilitationprogramhad54 0treatmen tgoals(rangee21 2goalsperpatient).Thepatientshadasignificantlyhighermedianattainmentscoreetha nth emaintherapists(5versus4 ,n = 286 ,p

A randomised controlled trial, involving 112 adolescents with asthma, and a 2-year follow-up was conducted to assess the impact of an intervention programme aimed at enhancing adherence to asthma medication. This programme had a duration of 1 year and consisted of an experimental group which received usual care from a paediatrician, but additionally attended individual and group sessions with an asthma nurse, and a control group which received usual care only. The programme aimed at enhancing adherence by stimulating a positive attitude, increasing feelings of social support, and enhancing self-efficacy. At baseline, and after 12-month (T1) and 24-month (T2) follow-up, the participants filled in questionnaires which were based on the concepts of the ASE-model. Adherence was assessed by self-report (range: 1-10) at the same points in time. After 12 months, 97 adolescents (87%) were available for follow-up, decreasing to 86 adolescents (77%) after 24 months. No statistically significant differences were found between the control and the experimental group, except for one. At T2, self-reported adherence appeared to be statistically significantly higher in the experimental group. In conclusion, there seems to have been no substantial effect of the intervention programme. Copyright © 2001 Elsevier Science Ireland Ltd.

Functional exercise tolerance in patients with chronic obstructive pulmonary disease (COPD) is often assessed by the 6-min walking test (6MWT). To assess if the use of multiple factors adds to walking distance in describing performance in the 6MWT, an exploratory factor analysis was performed on physiological measurements and dyspnea ratings recorded during testing. Eighty-three patients with mild to severe COPD performed repeated 6MWTs before inpatient pulmonary rehabilitation. Factor analysis on 15 variables yielded a stable four-factor structure explaining 78.4% of the total variance. Recorded heart rate variables contributed to factor 1 (heart rate pattern), walking distance, heart rate increase, and decrease contributed to factor 2 (endurance capacity), oxygen desaturation variables contributed to factor 3 (impairment of oxygen transport), and dyspnea and effort variables contributed to factor 4 (perceived symptoms). Walking distance decreased in half of the 53 patients measured posttreatment, but self-perceived change in exercise tolerance improved in 84% and was explained by change in walking distance, by less desaturation, and by less dyspnea (R(2) = 0.55, p = 0.005). Qualitative analysis showed that 29 of 53 patients improved in three or four factors. Performance in the 6MWT can be described with four statistically independent and clinically interpretable factors. Because clinically relevant changes consist of more than only walking distance, assessment of functional exercise tolerance in patients with COPD improves by reporting multiple variables.

he inaccurate perception of airway obstruction is a risk factor in fatal asthma and a common problem in asthma management. Perceptual inaccuracy often has been attributed to airway pathophysiology. Accuracy is defined in terms of airway obstruction, reflected in lung function. The accuracy of symptom perception was investigated in this study during induced airway obstruction. In Exp 1, 30 children and adolescents with asthma underwent a histamine provocation test. In Exp 2, 64 children and adolescents with asthma and 30 without asthma performed a physical exercise task. Ages ranged from 7-18 yrs. Lung function and self-reported dyspnea were measured in parallel. The results showed that dyspnea reporting was independent of lung function, asthma severity, and airway hyperresponsiveness. Ss with asthma but without airway obstruction reported significantly more dyspnea than controls. It was suggested that dyspnea is a highly subjective experience with its magnitude determine!d by psychological and situational factors rather than airway pathophysiology.

This study compares the reproducibility, construct validity and responsiveness of self-report and parent-report quality of life questionnaires How Are You (HAY) for 8-12-year-old children with asthma. A total of 228 Dutch children with asthma and their parents completed the HAY and daily recorded the child's asthma symptoms in a diary. Additionally 296 age- and -gender matched healthy children and their parents completed the generic part of the HAY. Reproducibility and responsiveness were examined in a sub-group of 80 children with asthma. In this group, three measurements were carried out, at baseline, after one week and once during the following 6 month when the clinical asthma status had changed. The within-subject standard deviations (SD) of three dimensions (physical activities, social activities, self-management) differed significantly (p < 0.05) in favour of the parent-version, indicating that the reproducibility of the parent version was better than that of the child version. The mean score-differences between children with asthma and healthy children as reported by parents did not significantly differ from those reported by children, except for cognitive activities (e.g. be able to concentrate on school work). The mean differences with regard to children with a different actual asthma status (symptom analysis), as reported by both informants, did not differ. Compared to the child-version, the parent-version showed greater ability to detect changes in children's quality of life over time for all but one dimension, indicating better responsiveness. The results indicate that in discriminative studies child and parents reports can be substituted on a group-level. In longitudinal studies data have to be obtained from parents. Consequently, caregivers collecting quality of life data for longitudinal purposes in daily practice should collect these data simply from parents.

The discordance between the objective and subjective symptoms of asthma has major effects on proper medication and management. In 2 studies the influence of respiratory sounds in the process of symptom perception underlying breathlessness was investigated in children aged 7-17 years. In Experiment 1, asthmatic wheezing sounds were recorded in 16 children during histamine-induced airway obstruction. Breathlessness correlated significantly with rank order of amount of wheezing, but not with lung function. In Experiment 2, after standardized physical exercise, 45 asthmatic and 45 nonasthmatic children were randomly assigned to (a) false feedback of wheezing, (b) quiet respiratory sounds, or (c) no sound. Asthmatic children reported significantly more breathlessness in the 1st versus the 3rd condition. In conclusion, many asthmatic children were easily influenced by wheezing in their estimation of asthma severity, reflected in breathlessness.

An educational training program for children with asthma, aged between 8 and 13 years, was evaluated in an 18-month randomized, controlled experiment, including three follow-up evaluations. The objective of the program is to improve coping with asthma in daily life. The program, ten 1-hour sessions, is a combination of self-management training and cognitive behaviour therapy in a group, using games and learning materials specifically designed for this age group. From 195 asthmatic children, 112 with inadequate self-management abilities were selected; these children were randomly divided into an experimental group and two control groups. The results indicated highly significant differences in favor of the experimental group on the psychological and medical variables. There were no drop-outs during the program. The conclusion is that this multi-faceted program is an effective method of teaching children how to cope with their asthma and helping them to achieve a less anxious and more realistic attitude towards their illness.

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 p0.0002) 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.

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.

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.

Episodic airway obstruction and hypoxia are potentially life-threatening to children with asthma and may account for neuropsychological impairment. Moreover, living with this chronic disease may severely disrupt children's emotional functioning. The general functioning of 25 children with severe asthma aged 10-13 years was tested by a comparison with 25 matched normal controls. Testing included variables with relevance to normal daily functioning: memory, concentration, school performance, physical condition, subjective symptoms after exercise, and negative emotions. The results showed that children with asthma did not significantly deviate from controls. They reported more dyspnea after physical exercise, which could not be attributed to lung function. Differences in school performance were not significant. It was concluded that children may generally adapt well to living with asthma.

Focus group interviews were conducted with 14 adolescents with asthma to explore self-management behavior, in particular with regard to adherence behavior. In addition, the adolescents discussed their feelings about having asthma, gave insight into how they evaluate the provided health care, and made recommendations for healthcare providers and for the development of patient education materials. The majority of participants did not take their prophylactic asthma medication regularly, and were rather late in starting to use their bronchodilator. They were sometimes fed up with having asthma. Moreover, the majority of participants were not always frank in telling their pediatrician how they managed their asthma. Finally, they found it essential that information about asthma should be given personally and not by means of leaflets, and recommended that healthcare providers should use audio-visual aids to illustrate what they are explaining. The results of the focus group interviews have been used for the development of an intervention program which aims at enhancing adherence in adolescents with asthma.

METHODS The HCPT is a board game, containing a comprehensive set of 33 questions about haemophilia, including coping strategies, perception of the disease, knowledge, self-management and distress. We are aiming to include at least 30 boys with haemophilia in the age of 8-12 years in this multicentre study (Emma Children’s Hospital, UMC Groningen, Catharina Hospital Eindhoven, Leiden UMC, Radboud University Nijmegen Medical Centre and Sophia Children’s Hospital Rotterdam). To validate the HCPT, children and parents complete the HaemoQoL (Haemophilia Quality of Life questionnaire short version), two coping questionnaires (CODI; Coping with a Disease and the Op Koers questionnaire) as well as the State-Trait Anxiety Inventory for Children (STAIC). After fi nishing the HCPT, children and parents respond to an evaluation questionnaire about the HCPT.

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.