Vivian T. Colland

An intervention programme using the ASE-model aimed at enhancing adherence in adolescents with asthma

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.

Which source should we use to measure quality of life in children with asthma: the children themselves or their parents.

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 childs 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 childrens 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.

Learning to cope with asthma: a behavioural self-management program for children.

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.

Adherence-Related Behavior in Adolescents with Asthma: Results from Focus Group Interviews

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.

Predicting adherence to prophylactic medication in adolescents with asthma: an application of the ASE-model

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.

The impact of severe asthma on schoolchildren

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 childrens 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.

Accuracy of Symptom Perception in Asthma and Illness Severity

The 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 during induced airway obstruction. In Experiment 1, 30 children and adolescents with asthma underwent a histamine provocation test. In Experiment 2, 64 children and adolescents with asthma and 30 without asthma performed a physical exercise task. Ages ranged from 7 to 18 years. Lung function and self-reported dyspnea were measured in parallel. The results showed that dyspnea reporting was independent of lung function (Forced Expiratory Volume in 1 sec), asthma severity, and airway hyperresponsiveness. Participants 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 determined by psychological and situational factors rather than airway pathophysiology.

Zelfmanagement en therapietrouw: ménage à deux van dokter en patiënt

SamenvattingIn dit artikel worden zelfmanagement en therapietrouw beschreven: twee belangrijke determinanten voor het adequaat omgaan met een chronische aandoening, waarbij zowel de arts als de patiënt 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 patiënt 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 patiënt. Ook bij de behandelaar zou men van therapieontrouw kunnen spreken, namelijk indien hij onvoldoende aandacht besteedt aan de beweegredenen van therapieontrouw bij de patiënt. 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.SummarySelf management and adherence are described as two important determinants for adequate coping with chronic illness, in which both the paediatrician and the patient have an active role. Especially in chronic intermittent illnesses self management is regarded as a supplement to regular medical treatment. Self management is a planned programme mostly given by physician or specialized nurse with the aim to activate the child and the parent to manage the illness by adding behavioural elements to educational activities. The building blocks that are needed for adequate self management are described for different age groups. In a similar way adherence is essential for controlling chronic illness. Non adherence brings frustration and disillusion in paediatrician and patient alike. Reasons for being non adherent and practical tips for enhancing adherence are given. An active role of the physician or specialized nurse in openly discussing a number of problems concerning non adherence is stressed. Intervention programmes that include cognitive behavioural elements and modern technologies with the aim of improving self management, adherence and coping with chronic illness are described.

Reliability, validity and evaluation of the Haemophilia Coping and Perception Test

Haemophilia is an X-linked bleeding disorder, caused by an inherited deficiency of clotting factor VIII (FVIII; haemophilia A) or FIX (haemophilia B) and leads to spontaneous and posttraumatic bleeds [1]. In the Netherlands, boys with severe haemophilia receive adequate prophylactic treatment to reduce the risk of irreversible joint damage and to increase the quality of life. However, boys may still endure difficulties and impairments, such as hospital visits, frequent injections and limited participation in (sport) activities [2]. Little is known about the knowledge, competencies, coping skills and perception children with haemophilia have to manage and cope with their disease. More insight into these concepts is important, because then it is possible to support patients, improve psycho-education and disease management, which can positively influence not only physical outcomes, but also psychosocial well-being, such as improvement of healthrelated quality of life (HRQOL) [3]. Coping is defined as ‘an emotional response to external negative or stressful events’ [4] and is an important factor in the acceptance of the disease and HRQOL in children with haemophilia [5]. Perception of disease is defined as ‘emotional and cognitive representations of illness’, including feelings of anxiety and worries about the illness [6]. To detect children with inadequate coping skills or non-realistic attitudes and anxiety, Colland & Fournier [7] developed and validated the Asthma Coping Test (ACT) for children with asthma aged 8–12 years. The test is unique because it is presented in board game form [7]. Recently, the ACT has been adapted by the Hemophilia Comprehensive Care Treatment Center in Amsterdam for boys with haemophilia and called the Haemophilia Coping and Perception Test (HCPT). By providing a tool to assess coping and perception in clinical practice, a contribution can be made to recognize what boys find difficult and to provide psychosocial support required for children with haemophilia [3]. Also, we know from research that board games are useful in counselling children [8]. The aims of this study are to assess reliability and construct validity of the HCPT, describe the coping and perception of boys with haemophilia and evaluate the usefulness of the HCPT. Therefore, all boys aged 8–12 years with haemophilia under treatment in one of six participating Dutch Hemophilia Treatment Centers were invited to participate in this study by a letter between July 2011 and January 2013 after approval by the ethics committee. All parents gave written informed consent. The paediatric psychologist (P.L.) visited all respondents at home. The HCPT was played one-on-one; parents could be present but not allowed to participate or intervene. Evaluation questionnaires were completed after the HCPT. Parents completed a socio-demographic questionnaire about themselves and their child. The HCPT takes approximately 45 min and has two sides – sports and pirates/treasures (Fig. 1). The boy chooses which side he prefers. Players roll the dice, advance the piece the corresponding number of squares on the board and read a corresponding card. The blue cards contain the true test items (32 items), which can be answered by the child only and consist of two scales; coping (e.g. ‘When you have a bleed, what are you supposed to do’?) and perception (e.g. ‘Do you ever feel different from your friends because you have hemophilia’?). The yellow cards (34 items) contain questions or assignments to amuse the players (e.g. ‘walk around the room like an elephant’). The red cards (34 items) contain questions to facilitate and promote conversations about more personal topics (e.g. ‘what do you do when you cannot sleep at night’?). The scale score of the coping items is calculated as the sum of the items. The coping scale has two versions; one for boys with moderate or mild haemophilia (coping) and one with four additional questions regarding prophylaxis for boys with severe haemophilia (coping-S). The higher the score, the better the reported coping skills. The scale score of perception items is calculated as the sum of the items. A lower score indicates realistic perception, with low anxiety. Questionnaires were mailed to respondents 1 week before the home visit. To assess construct validity of Correspondence: Lotte Haverman, PhD, Psychosocial Department, Emma Children’s Hospital, Academic Medical Center, A3-241, PO Box 22660, 1100 DD Amsterdam, The Netherlands. Tel.: +31 20 5665674; fax: +31 20 6091242; e-mail: l.haverman@amc.nl