Child behaviour and Pain after Hospitalization, Surgery and Anaesthesia.

Transcription

1 UMEÅ UNIVERSITY MEDICAL DISSERTATIONS NEW SERIES No ISSN ISBN From the Department of Surgical and Perioperative Sciences, Anesthesiology and Intensive Care and the Department of Clinical Sciences, Division of Child and Adolescent Psychiatry. Umeå University, Umeå, Sweden Child behaviour and Pain after Hospitalization, Surgery and Anaesthesia. Mats Karling Fakultetsopponent: Docent Per Gustafsson Avd. för Barn och Ungdomspsykiatri Linköpings Universitet, Linköping Umeå 2006

2 Copyright 2006 Mats Karling ISBN Printed in Sweden by Print Media, Umeå, 2006

3 During a visit to Children s Clinic in Düsseldorf some forty years ago I noticed a very fat lady wandering about the ward with a very measly baby on her hip. I asked Schlossman the Director, who she was and I was told that, whenever they had a baby for whom they had made everything medically and were unsuccessful they turned the baby over to old Anna and told her to take charge. Old Anna was always successful. Dr. Fritz Talbot, 1941

4 Abstract ABSTRACT Hospitalization, surgery and anaesthesia are for some children associated with anxiety and could be a frightful experience which may result in later problematic behaviour. Pain is associated with the fears of hospitalization. The first aim was to investigate how pain in children is treated in Swedish hospitals as well as to assess the results of this treatment. Behaviour after hospitalization has been measured by the Post Hospital Behaviour Questionnaire (PHBQ). A second aim was to translate this instrument into Swedish and to validate it. The third aim was to analyze which factors (sociodemographic background; earlier experience; events at the hospital) that might be associated with changes in behaviour. Methods: A questionnaire regarding acute pain, its treatment methods and results of treatments as well as contributing factors to inadequate results, was sent to all departments in hospitals that might treat children. One form was answered by physicians and another form by nurses. In the second part of the study, a cohort of 340 children ages 2-13 were followed from two weeks before hospitalization until two weeks after. Data regarding sociodemography and earlier health care experience were collected. The Child Behaviour Checklist was issued before and after hospitalization, the PHBQ was issued after. During hospitalization staff and parents assessed anxiety, pain and nausea mainly by VAS and Likert scales, (parents assessed own and child emotions). Children, older than 4-5 years of age, assessed their own pain using a faces scale. Results: Despite treatment, moderate to severe pain occurred postoperatively in 23% of patients and in 31% of patients with pain of other origin. Postoperative pain seemed to be a greater problem in units where children were treated together with adults and in departments where fewer children were treated. Pain could often or always be treated more efficiently according to 45% of physicians and nurses. Of all departments, pain assessments were performed regularly in 43%, but pain measurement was less frequent. Opioids were never or infrequently used by 15 %. A five factor model fitted data better than the original 6 factor model when confirmative factor analyse was performed. Cronbach s alpha was adequate for factors and excellent for the total score (0.92). Risk factors for increased problematic behaviour included the following: age less than 5 years of age, living in a one adult family, anxiety at anaesthesia induction, nausea at hospital and pain at home. Living in a rural area and midazolam in premedication seem to be protective. Conclusions: Acute pain in children is still a problem. Inadequate pain treatment is mainly associated with organisational factors (missing prescriptions; a low rate of pain assessments). The PHBQ in Swedish translation is a reliable instrument and its relation to CBCL warrants its further use in research and quality control especially in younger children. Hospital-induced stress in older children needs further investigation. One third of the children who have been hospitalized and exposed to anaesthesia will have increased problematic behaviour when returning home. Proactive interventions are suggested to prevent this by improving pain treatment at home. 4

5 Original Papers ORIGINAL PAPERS This thesis is based on the following papers, which will be referred to in the text by their Roman numerals: I Mats Karling, Maria Renström, Gustaf Ljungman. Acute and postoperative pain in children: a Swedish nationwide survey. Acta Paediatr 2002; 91: II Mats Karling, Hans Stenlund, Bruno Hägglöf. Behavioural Changes after Anaesthesia: Validity and liability of the Post Hospitalization Behaviour Questionnaire in a Swedish Paediatric Population. Acta Paediatr 2006; 95: III Mats Karling, Bruno Hägglöf. Child behaviour after anaesthesia: Association of socioeconomic factors and Child Behaviour Checklist to the Post Hospital Behaviour Questionnaire. Acta Paediatr, in press IV Mats Karling, Hans Stenlund, Bruno Hägglöf. Child behaviour after anaesthesia: Associated risk factors. Acta Paediatr, submitted Reprints of original papers were made with approval from the publishers. 5

6 Contents CONTENTS ABSTRACT...4 ORIGINAL PAPERS...5 CONTENTS...6 ABBREVIATIONS...8 INTRODUCTION...9 BACKGROUND...10 Child behaviour as a measurement of psychological problems...10 The Post Hospital Behaviour Questionnaire (PHBQ)...10 Psychometric properties of the PHBQ...11 Behavioural changes in children after hospitalization...12 Frequencies of behavioural changes...12 Duration of behavioural changes...12 Risk and protective factors...13 Sociodemographic factors...13 Health care associated factors...14 Interventions...15 Preparation programs...15 Anxiolytic and sedative premedication...16 Parental presence...16 Anaesthesia technique...16 Pain...17 Summary...17 AIMS...18 DESIGN...19 Study I: Acute and postoperative pain in children...19 Study II-IV: Child behaviour after hospitalization...19 ETHICAL CONSIDERATIONS...20 PATIENTS AND METHODS...22 Study I: Acute and postoperative pain in children...22 Study II-IV: Child behaviour after hospitalization...22 Child Behaviour Checklist (CBCL)...23 Anxiety and distress...23 Pain and nausea...24 Statistics...24 RESULTS...25 Study I: Acute and postoperative pain in children...25 Extent of acute pain...25 Reasons for inadequate pain treatment

7 Contents Amount of time spent on pain treatment Pain treatment methods Regional analgesic techniques Organisational and educational aspects...29 Study II-IV: Child behaviour after anaesthesia Population...30 Validation process: Factor analysis...31 Reliability...35 Relations between PHBQ and CBCl...35 Risk factors for the development of behavioural problems after hospitalization DISCUSSION...46 Study I: A survey of acute and postoperative pain Study II-III: Validation of the Post Hospital Behaviour Questionnaire Factor analyses Internal consistency...48 Association between CBCL and PHBQ...48 Study IV: Risk factors for increased problematic behaviour after hospitalization...50 Frequencies of behavioural change...50 Sociodemographic factors...50 Health care associated risk factors...51 Methodological considerations...53 Clinical implications...54 Pain reduction...54 Child anxiety reduction...54 Nausea reduction...54 Suggestions for further research...55 CONCLUSIONS...56 ACKNOWLEDGEMENTS...57 SVENSK SAMMANFATTNING...58 APPENDIX PHBQ frågeformulär...60 REFERENCES

8 Abbreviations ABBREVIATIONS CBCL CI ENT NSAID OR PCA PHBQ PRN VAS Child Behaviour CheckList Confidence Interval Ear, Nose and Throat surgery Non Steroid Anti Inflammatory Drug Odds Ratio Patient Controlled Analgesia Post Hospital Behaviour Questionnaire Pro re nata, a medical term for "As the situation arises". Visual Analogue Scale 8

9 Introduction INTRODUCTION In the beginning of the 20 th century, it was observed that children who were hospitalised for some time developed symptoms like pallor, immobility, quietness and unresponsiveness to smiles or other stimuli (1). They looked unhappy and gave an impression of misery. Children who stayed in an institution for a long time almost always died eventually. The development of this reaction, hospitalism, was dependent on the duration of stay, and in some children the symptoms developed after a few days. This reaction was associated with deprivation of maternal care. Since this discovery, there has been a great improvement in the care of the hospitalized child (2). It is now accepted that parents stay with their child when the child is hospitalized, at least for younger children. In the 1940 s it was observed that childhood health care in the form of operations or procedures could give rise to a psychic trauma resulting in symptoms which could last for several years (3). The reactions were night terrors, negativistic reactions like destructive behaviour, spiteful reactions towards parents, disobedience and temper tantrums, dependency reactions like clinging to their mother, fears of darkness, hospital, physicians and nurses and other things. In the early 1950 s, Eckenhoff performed a survey of personality changes after ENT surgery in children. He concluded that the anaesthetic management might be the reason for the personality changes detected in some children (4). It was a common observation in all these publications that the youngest children, less than 3-5 years of age, were the most vulnerable to psychic trauma of hospitalization and operations. For a child, a visit to the hospital may be a frightful experience. It could mean a lot of things such as being harmed or injured, it could mean pain and discomfort, it could mean separation from parents and loss of control, unfamiliar and strange and unknown environment (5). There could be an element of physical restraint, which could give psychological sequelae to both child and staff involved (6, 7). Anyone who has been involved in a traumatic procedure including some degree of restraint knows what an upsetting experience it is. Surgery and anaesthesia have been of special concern, and these are stressful events for the whole family (8). Parents may worry about brain damage after anaesthesia, failures of the procedure, death, but also of lack of control and separation (8). Pain is a common worry for both child and parent. There has been an increasing interest in pain and pain treatment in children during the last 20 years. Many investigators have found that pain in children is underestimated, (9, 10) is inadequately treated (11) and that children get fewer analgesics than adults (12). Why treat pain? Pain is a signal that our body is at risk for harm and it is an unpleasant feeling. Pain may have several effects; it is a trigger of our physiological stress system (13) which results in increasing levels of catecholamines, cortisol, and inflammatory mediators. This in turn will increase the risk of mortality and morbidity for the most vulnerable children (14). Moreover, it 9

10 Introduction interacts with our immune system which may increase the risk for infections or tumour growth (13, 15, 16). Pain in the early phases of life seem to enhance our pain perception lasting for a long time (17, 18). Although surgery, stress and pain may have negative effects on very young or ill children, the majority of hospitalized children are healthy, have good physiological reserves and physiological stress response may have none or only limited effect on morbidity and mortality. The psychological effect of pain is more unclear. There is some evidence that pain in hospital does not have any influence on subsequent behavioural problems (19-21), although frequent and/or earlier negative experiences from health care seem to increase child anxiety (21-23). BACKGROUND Child behaviour as a measurement of psychological problems. Child behaviour is often measured by the use of questionnaires which can be completed by parents or teachers, and in connection with certain procedures, by health care staff. The most commonly used general questionnaire instrument is the Child Behaviour Checklist (CBCL) developed by Achenbach and co-workers (24, 25). There is an older instrument (26) which has been used in some studies, but this has not been translated into Swedish. Finally there are special instruments for measuring anxiety which are not only based on behaviour, including for example The Modified Yale Preoperative Anxiety scale (27) and Sate-Trait Anxiety Inventory (28). The Post Hospital Behaviour Questionnaire (PHBQ) In the 1940 s it was observed that children who had traumatic hospitalizations developed a variety of symptoms and personality problems (1-4): eating problems sleep problems like insomnia, nightmares or phobias for the dark enuresis regression to earlier levels of behaviour depression, restlessness, anxiety terror of hospitals, medical personnel, needles Vernon and co-workers analysed those symptoms and signs together and tried to find relationships between symptoms. The result was a parent-rated instrument for quantifying and describing the symptoms in six different dimensions, called The Post Hospitalization Behaviour Questionnaire (PHBQ). PHBQ was developed from 6 studies concerning post hospitalization behaviour, examining children who had been hospitalised and underwent anaesthesia and surgery during the 1950 s. 10

11 Background All symptoms mentioned in 2 or more of these studies were included in the questionnaire. The first PHBQ was a 28 item questionnaire and was developed in the 1960 s (19). One item was deleted due to irregularities in answers (concerning siblings). PHBQ consists of 27 items concerning sleep, eating, anxiety, aggressive behaviour, etc. For each item the parent was asked to compare the child's current (post-hospitalization) behaviour with that the week before hospitalization. Five response alternatives were provided: much less, less, unchanged, more, much more than before hospitalization. Each answer was given a score from 1 to 5. Total score was calculated by adding all responses. Factor analysis made it possible to extract six subscales by grouping the items together. The subscales were: General anxiety and Regression, Separation anxiety, Anxiety about sleep, Eating disturbance, Aggression towards authority and Withdrawal. Another 4 more items were excluded due to low loading or loading to more than one factor which made the final version contain 23 items. Psychometric properties of the PHBQ The stability over time was tested in 37 children undergoing cardiac catheterization. Parents completed the questionnaire after 3 days and after 1 month. The total score from these 2 occasions were significantly related. The questionnaire used in this study had 2 items omitted and only 3 response alternatives (29). The construct validity was tested by comparing the total score from the questionnaire with ratings done by a child psychiatrist who interviewed 20 children a week after tonsillectomy (r=0.45, p<0.05) (19). The ratings were confirmed by a child psychologist who analysed the interviews from tape recordings. To test whether the parental style for completing the questionnaire introduced bias into the score, a comparison was made for the scores for 3 groups of children who underwent tonsillectomy (parent interviewed, parent only filling in the questionnaire and parent both interviewed and filling out the questionnaire). There were no significant differences between the 3 groups in any statistical measure. The original PHBQ study (19) was performed on 387 children (48% response rate), aged from 6 months to 16 years. The internal consistency (Cronbach s Alpha) varied from 0.45 to 0.73 for factors and was 0.82 for the total score. The use of a control group to validate the instrument has been used twice. A group of healthy siblings was compared to hospitalized children (21). This study showed that when comparing the fraction that had any deterioration in behaviour on day 3 after hospitalization there was a difference between hospitalized and nonhospitalized, but not 30 days after. There were some problems in the way the control group was chosen, since the sibling may well be affected by the family situation where one child had been hospitalized. This study only examined negative change and no positive change. Using scoring summing any negative change may be outweighing a positive one. In the second study using a control group there were some methodological problems in that the control group and hospitalized group were not comparable (30). This study showed that the hospitalized group improved 11

12 Background while the non hospitalized group deteriorated. The control group consisted of siblings or children going to pass a routine physical examination before school start or a summer camp. The PHBQ exists in 2 different versions, the original, relative form, where the parent is asked to compare the present (post hospitalization) behaviour of their child with the behaviour before hospitalization. In the other version, the absolute form, the parent is asked to asses the behaviour as they see it now. Then to evaluate any change the questionnaire is issued twice, before and after hospitalization, the last assessment may be done several times in order to follow any change over time. The relative version is considered as more sensitive while it may introduce more bias (31). The absolute form may well introduce the problem of test-retest attenuation or practising effect known from the CBCL (32). There are also different ways to present results, the original publication where scores for the total PHBQ and subscales were calculated, other studies use only the total score and some present only data from any negative change. The most frequently used version has the original 27 items, but there exists an extraction used in some studies (23, 33), containing only 17 items and three alternatives of answers. However, this format has not been validated. There is an even shorter version with only 11 items (34) and only two alternatives, this is probably derived from the very first version from Vernon since it contains the question of aggressive behaviour to sibling, this item was early rejected since not all children had siblings. The PHBQ has been used in extensive research since its introduction in the late 1960 s. Studies have been focusing on epidemiological issues, in finding risk factors or as an outcome measurement for different interventions. Behavioural changes in children after hospitalization Frequencies of behavioural changes The reported frequency of behavioural changes after hospitalization differs a lot, from no change (30) to almost 80% (35) of children showing some negative changes. It is not easy to make comparisons between different studies due to different ways of presenting data, with some authors only presenting negative outcomes while others use the instrument to present net effects. A fairly common number is between 15-40% (21, 23, 34, 36, 37) measured 2 weeks after hospitalization. Duration of behavioural changes It seems that the behavioural problems are greatest in the immediate postoperative period, and then diminish with time. There is just one long-time follow up study (20). This study shows that after one year 7.3% still had some problems, 54% had negative behaviours at two weeks and 20% at 6 months. There was no control group. There have been some studies about behavioural problem in children with repeated hospitalizations. Hospitalizations before the age of 5 had negative influ- 12

13 Background ence on behaviour at 5 years of age but not at 10, while hospitalizations between 5 and 10 years of age influenced behaviour at the age of 10 negatively (38). A study in New Zeeland in 1984 of 6 year old children, did not show any relation between hospitalizations and behaviour if sociodemographic factors and life events were taken into account (39). Risk and protective factors Sociodemographic factors Siblings The number of siblings and birth order and its impact on postoperative behaviour has been examined, though published results are contradictory. Stargatt et al. found that having two or more older siblings was a risk factor 3 days after hospitalization but not at 30 days (21). Another study found that having no siblings increased the risk for separation anxiety (20). Social class/education The influence of social class/education of parents has not been well established. In the original publication of the PHBQ (19) the population was stratified according to type of hospital care: private, multiple bed or clinic which was suggested to correlate with social class. The result was that children from the clinic did benefit psychologically from hospitalization, perhaps because they came from underprivileged homes and got better care, food, toys etc than they were used to. Maybe they were also more used to stress. Another study did not find any relation (21). Alternate child care (eg. divorced parents) seems to be a protective factor (40), but day care may be a risk factor (41), in that study no potentially confounding factors as social class, family type was included in the analyse. Age Many authors have found younger children to be most vulnerable. This observation was made long time ago (3, 4, 19) and has been confirmed in more recent studies (20, 21, 23). Children younger than 5 years of age seem to be a risk group, and separation anxiety is the most frequent problem. This is in agreement with psychological theories were separation from caregivers is a major threat for the young child (42, 43). In this age group, the child has difficulties in understanding the purpose of hospitalization, but is an object to stress and harmful events. A meta analysis failed to find a connection between age and behaviour (31), which may be a result of the methodology. The studies were divided into two groups according to the median age in the population: older than 6 years or younger. The cut-off value made the younger group contain children who was less at risk. Moreover, since only the median age of the study group was used to represent the material both groups contained young and older children. There are even some evidence that children between 5 and 10 years of age may be at risk having more longer lasting behavioural problems than younger children (38). 13

14 Background Gender Gender has not been shown to be of any major influence (19-21). Psychological issues The influence of child temperament has been analysed in a few studies; Kain et al. found that children who scored high on the impulsiveness scale had a higher frequency of problematic behaviour postoperatively (20), another recent study could not find any correlation between temperament and postoperative behaviour (21). Health care associated factors Length of stay Length of stay has been studied in several ways: day care vs. inpatient care and stays longer periods vs. shorter. Only one controlled study comparing day care vs. inpatient has been published (44). This one favoured day care which showed less negative behaviour both at one week and at a three month follow up. A meta analysis showed least influence on behaviour if the child spent more than 4 days at hospital, spending 2-3 days was worse than day care (31). The authors speculated that this might be due to the child having time to become used to the hospital, staff and routines. In a recent cohort study of 1250 children, it was concluded that staying more than one night was correlated to more problematic behaviour after one month, while day care were associated with less problematic behaviour after 3 days (21). Type of procedure There has been concern about negative psychological reactions to urogenital surgery (42), but it is difficult to find conclusive evidence. The psychological aberrances may be related to the procedure or to any malformation which is the reason to the procedure. Previous health care experiences For some children health care is associated with negative experiences, and this has been shown to influence the forthcoming visits to hospital. It may make anaesthesia induction more difficult and connected with more anxiety (20, 23, 45, 46). It is also associated with more problematic behavioural outcome in the early phase (22, 23) and after 4 weeks (21). Previous anaesthesia per se does not seem to be a risk factor (47). Hospitalization in children between 5 and 10 years of age seem to have negative influence on the behaviour, as measured at the age of 10 (38). Child anxiety Anxiety at anaesthesia induction, when separating from parents or at time for premedications seems to be an important factor for later behavioural problems both in the early phase (22, 48) and later (20, 33, 37, 46, 48). 14

15 Background Parental anxiety Parental anxiety at anaesthesia start for the child seems to be a predictor of child anxiety and later behavioural problems (20, 48, 49). In a recent study this influence was found after 3 days but not after 30 (21). Interventions Preparation programs Hospitalization, surgery and anaesthesia are connected to real or imagined threats. This may give rise to anxiety and stress reactions both in parents and child. Preparation before hospitalization and procedures has the intent to diminish those reactions and help child and parent to cope with presumed threats. Preparation has several purposes: one assumption is that unknown threats are worse than known, another purpose is to establish a trustful relationship with a care provider (5, 50). Preparation programs have been studied and their impact on child anxiety and behaviour have been assessed by several methods. The outcome of preparation seems to depend of several factors: timing, i.e. before hospitalization or at hospital (51), the frequency, once or repeated, relation to different age groups. The interval between preparation and the procedure in relation to age also seems be of importance (51). Preparation could be of different kinds including provision of simple verbal information, pre hospitalization visits and tours, playing in medical or non-medical milieu, videos, and written information. A meta analysis from 1993 showed that preparation after admission to hospital and especially at repeated intervals was the most effective (52). Preparation before hospital admission may even have negative effects on later behaviour. The same study found that interventions were more effective in an older age group where median age was above 7 years of age compared with less than 6 years of age. Margolis performed a controlled study on children undergoing elective day care surgery (53). The parents received a book containing visual sensory and olfactory sensations similar to that of anaesthesia at a preoperative visit to the hospital. The parents were instructed to read the book for their children at home before the surgery. Children in the intervention group showed less aggressive behaviour two weeks after hospitalization, but were more anxious at anaesthesia induction. Kain et al. performed a study with three different types of intervention: OR (operating room) tour, OR tour and a videotape and OR tour videotape and information rehearsal program of 30 min (54). The intervention took place 1-2 days in advance for younger children and 5-10 days for older kids. Children exposed to the most extensive program were somewhat less anxious in the holding area; otherwise there were no differences between the groups, except that parents were less anxious. Stargatt et al. compared different ways of preparation. Extended or brief conversations between child and parent, discussion with anaesthetist or nurse, different time intervals were used. There were no differences in results for these different preparation strategies. Children of parents who reported that they were prepared by a discussion with an anaesthetist demonstrated more negative behaviours 3 days 15

16 Background after surgery. After 30 days, children whose parents reported that they prepared their child by reading a book demonstrated significantly more problematic behaviours. The most successful preparation program seems to be that presented by Visintainer et al. ( Stress Point Preparation ) (5). The program combined preparation for the stressful event beforehand and comforting the child after the procedure or stressful event. Preparing was done intermittently before the stressful event rather than once and tailored to the individual child rather than a structured program. Anxiolytic and sedative premedication The purpose of sedative premedication is to reduce child anxiety at separation from parents and to facilitate anaesthesia induction, especially when mask induction is used. The effects of premedication has been studied both alone or in relation to other interventions like parental presence at anaesthesia induction or preparation programs. Midazolam has been found to decrease anxiety at induction of anaesthesia, at separation from parents (55, 56) and to attenuate problematic behaviour after hospitalization (56, 57). One study has found that using midazolam increased later behavioural problems (58), even if the child seemed to be less upset at anaesthesia induction. This study did not use a validated instrument for evaluation of behavioural changes. Premedication with other benzodiazepines may work as well in reducing anxiety at induction and later behavioural problems (35). Midazolam induces amnesia, and there are some concern if this always is beneficial (55). Moreover it has been shown that memories still can be present, even if it not possible to explicitly recall them, and fears and anticipatory anxiety can still be developed even if intentional recall of the event is blocked (59). Midazolam may cause paradoxical reactions like delirium and disinhibition (60). Parental presence Parental presence is used to make the child less anxious at procedures and possibly avoid separation anxiety. A randomised controlled study of children 1-6 years of age without any sedative premedication could not find differences in any psychometric measurement at induction or postoperatively at 2 weeks and at 6 months (49). Children with calm parents had lower cortisol concentrations at anaesthesia start. A meta analysis could not confirm any protective effect of mother presence on later negative behaviour (52). A cohort study of 1250 children in Australia could not find any influence of parental presence (21). Anaesthesia technique There has been some concern about mask induction of anaesthesia as a frightening experience for the child. There have been some studies comparing different inductions techniques. Kotiniemi et al. found that children had more negative memories after mask induction compared to rectal or intravenous inductions, although no differences were detected with the behavioural measurements (61). Stargatt et al. did not find any behavioural difference related to the induction method 16

17 Background (21). A comparison between intravenous induction, with or without cooling before placing of needle (during the era before EMLA ) and mask induction, showed less behavioural impact of intravenous induction compared with mask, but not if cooling was omitted (62). In a retrospective study using an abbreviated version of the PHBQ, inhalational induction with sevoflurane showed more long-lasting behaviour problems when used in the age group of children older than 4 years of age compared to inhalational induction with halothane (34). One reason for more negative behaviour in the sevoflurane group might be that this agent may induce emergence delirium (63) and this is a risk factor for later behavioural problems (56, 63). Pain Pain is correlated to postoperative anxiety at hospital (22) and anxious children experienced more pain postoperatively (64). After day surgery children had more negative behaviour at home the first day and after 4 weeks if they had pain at home the same day as the surgery (23). In other follow up studies after surgery, there have been no relationships established between pain at hospital and later behavioural problems (19-21, 65). Summary Young age, previous bad experiences from health care and staying more than one night at hospital have been shown to increase risk of developing behavioural problems. Premedication is probably a protective factor, while an anxious child or parent increases the risk. Emergency delirium seems to be another risk. Parental presence at anaesthesia induction does not seem to matter either the child is premedicated or not. Preparation programs may have a positive effect but they must be carefully tailored according to timing, the age group and the individual child. 17

18 Aims AIMS This thesis is an investigation on pain and behaviour in hospitalized children. The aims are: To estimate the frequency of acute pain, its treatment and results To analyse reasons why treatments not are successful To translate and validate an instrument for the measurement of child behaviour as an indicator of stress and anxiety To find to what extent problematic behaviour is occurring after hospitalization including anaesthesia To find risk factors for the onset of problematic behaviour To find out to what extent pain is a risk factor for problematic behaviour after hospitalization 18

19 Design DESIGN Study I: Acute and postoperative pain in children. In 1996, two identical questionnaires were sent to all anaesthesia, ENT, surgery, paediatric surgery, orthopaedic, general paediatric, and plastic surgery departments in Sweden. One questionnaire was completed by the physician most responsible for pain treatment; the other by a nurse, either the head nurse or a nurse responsible for pain treatment. Two questionnaires were used to sample both the nurses and physicians perspectives. A second letter was sent to remind non-responders. Many of the questions had been used in a study of pain in paediatric oncology (66). For each question, 2 to 7 alternatives were provided and the responder had to select the most appropriate. If exact data were not available, estimates were requested. Answers from physicians and nurses were compared. In most cases, nurses perceptions did not differ significantly from physicians. Data from physicians were used to analyse differences in practice between departments. When physician data were missing, nurse data were used. Study II-IV: Child behaviour after hospitalization The PHBQ was translated into Swedish using a translation-back translation method. A medical consultant with English as native language but speaking Swedish fluently performed the back-translation from Swedish into English. This person was ignorant of the original version of the questionnaire. Discrepancies between the original version and the back translation were used to adjust the wording of the items. To test the use of the questionnaire, a small group of parents of hospitalised children answered the questionnaire, and further adjustments were performed. The validation process was performed in three steps. 1. The first step was to investigate the factor structure of the instrument. This had not been done since its presentation except by one work which resulted in a 4 factor model (67). There are several ways of doing this analysis. To test which model fits data best, confirmative factor analysis using structured equation modelling was performed (68). 2. The next step was to test the internal consistency or reliability by calculating Cronbach s alpha (69). 3. The third step was to establish the construct validity ie. testing whether or not the instrument measured what it was supposed to do. This was done in the original presentation by comparing the results with an interview scored by two psychiatrists (19). In this thesis the construct validity was established by comparing with the CBCL which is a widely used instrument, validated in the Swedish language (24, 25, 70). 19

20 Design After the validation process the next task was to standardize the instrument according to demographic data such as education of parents, type of domicile, and family configuration. A cohort of children, 2-13 years of age, were identified who were scheduled for an elective procedure including anaesthesia either because of surgery or a diagnostic procedure. The children were consecutively recruited. Exclusion criteria was oncological disease, mental retardation or if parents was not speaking or understanding Swedish. They were followed from two weeks before the scheduled procedure, during the hospitalization, and then for two weeks after hospitalization. The procedure is illustrated in Figure 1. Two weeks before hospitalization, a letter was sent to the family containing information of the procedure and asking the parents and child if they wanted to participate. If they chose to participate, they were instructed to complete a questionnaire concerning sociodemographic data and the CBCL form. At hospitalization the parents received a form, regarding themselves and the child, concerning how well they were informed about the hospitalization and their emotions at anaesthesia start, in the recovery room and in the ward (in case of inpatient care). They were also asked about pain of their child postoperatively. The child was asked about pain and nausea regularly every 3 hours postoperatively until pain was well controlled (2 or more assessments less than 3). Staff recorded type of procedure, sedative premedication, anaesthesia induction method, parent and child emotions at anaesthesia start and performed assessments of pain, nausea and distress postoperatively. When leaving hospital the child and parent were asked about worst pain and usual pain during hospital stay. Two weeks after returning home a form containing PHBQ, CBCL and questions about pain intensity and duration as well as nausea, was sent to the parents. If not answered within a week, a reminder was sent. ETHICAL CONSIDERATIONS In study I no ethical approval was requested since it did not contain data regarding individual patients. In studies II-IV informed consent was obtained through a letter sent to the parents and child prior to the hospitalization together with the CBCL and a questionnaire regarding sociodemographic data. The Regional Ethics Committees at Umeå and Gothenburg Universities approved the study. 20

21 Design Time (weeks) -2 HOME 614 CBCL Sociodemographic data Previous hospitalizations Previous anaesthesias Declined Hospital Preparation Premedication 0 Operating theater Procedure Emotions Induction type Recovery room, Ward Pain Distress Nausea Lost in administration Not returned +2 HOME PHBQ CBCL Pain Nausea (55%) COMPLETED Figure 1. Flow sheet, number of patients, dropouts and data collected 21

22 PATIENTS AND METHODS Patients and Methods Study I: Acute and postoperative pain in children. Questionnaires were sent to 395 hospital wards, and 299 (75%) responded. In 114, no children were treated. The remaining 185 wards were at 78 hospitals, 2 children s hospitals and the rest general hospitals. The number of wards in the same hospital that answered was between 1 and 7 (Median 1.5, quartiles 1, 2.6). In total, 269 questionnaires were completed: 149 from physicians, 119 from nurses and 1 from another person (Table 1). Table 1. Frequency of sent and returned questionnaires according to type of speciality. (paper I) No of Percent No of sent Answer but no Total Frequency answers questionnaires children in dept. answering of answers Gen paediatric % Paed surgery * ENT % Anaesthesia % Orthopaedic % Plastic surgery % Gen surgery % Other * Total % * Speciality recoded by the responder Study II-IV: Child behaviour after hospitalization Data were collected during 2002 and All children except 14 were treated in the University Hospital of Northern Sweden, Umeå. The rest were from Queen Silvia Child and Youth Hospital in Gothenburg, Sweden. Number of participants and dropouts are illustrated in Figure 1. There were no differences in age or gender between dropouts and participants. Mean age for dropouts was 6.78 and for participants 6.97 (p=0.45, T-Test). There were 59% boys, 41 % girls among the participants and 65% boys, 35% girls among the dropouts (p=0.18, Chi-square test). CBCL was only distributed to the families in Umeå, which means that 326 responses were potentially available for CBCL calculations, 10 of those did not return the CBCL questionnaire and another 14 had to many missing items (>8). The response rate for CBCL was thus 50%. Individual answers for 64 items in 27 of the PHBQ questionnaire were missing (0.8%). Item 4 had 7 missing answers, which was the maximum numbers of missing data for any item. Two cases had several missing items but were included. Omitting those two cases did not change the results. 22

23 Patients and Methods Child Behaviour Checklist (CBCL) This instrument was developed by Achenbach and coworkers (24, 25) and is based on a sample of children referred to psychiatric clinics. It is widely used to assess behavioural/emotional problems and social competences in children, and has been translated and validated in at least 50 languages. It is validated and normalized for a Swedish population (70). The CBCL consists of items that rate the behaviour of a child by direct observation from a parent. Of two parts, the social competence was not used, only the items from behavioural/emotional portion. This consists of 100 items for children between 2 and 4 years of age (CBCL/2-3) and 113 for children from 4 years of age and older (CBCL/4-18). The parents are asked to answer the items in a three point scale: 0- do not agree, 1- agree somewhat or sometimes, 2- fully agree. The CBCL behavioural/emotional portion is divided into two broad-band dimensions: Internalizing and Externalizing. The Internalizing scale consists of three subscales in the form for ages 4 to 18: Withdrawn, Somatic complaints and Anxious-depressed, while in the 2-3 form the somatic complaint subscale does not exist. The Externalizing scale consists of Delinquent behaviour (age 4-18), Destructive behaviour (age 2-3) and Aggressive behaviour. The total score is computed by the sum of all subscales excluding item 103, which is omitted in the 4-18 version. The younger group consisted of 53 children and the older group of 249. To estimate any change in behaviour with the CBCL, the differences in item scores between after and before hospitalization were calculated. It was found in study III in this thesis that belonging to a group with high CBCL score was associated with a higher PHBQ score (Figure 6). In order to confirm if belonging to the high CBCL group was a risk factor, the population was dichotomized according to this score. The cut off value used was 22 for the younger population and 17.5 for the older. Anxiety and distress Parent and child anxiety at anaesthesia induction was assessed by both parents and staff using a 100 mm visual analogue scale (VAS). Staff assessed the emotional contact with parents and child using a 100 mm VAS scale where 100 mm was indicating no contact. Parents and staff assessed postoperative distress, staff used a 3-grade Likert scale 0=no distress, 1=some distress, 2=much distress. For evaluation 1 and 2 were grouped together. Parents assessed distress two times: in the recovery room and at the ward. A visual analogue scale of 100 mm was used. The mean of those values were calculated, if any of those two measurements were missing (e.g. day cases) the other was used. Parents assessed how well prepared/informed child and parents were regarding the procedure. The VAS scale was used and 100 mm indicated poorly prepared. 23

24 Patients and Methods Pain and nausea Pain was measured by self assessment with a six-graded faces scale (71) or, for children younger than 4 to 5 years of age, by observation and/or interrogation to child or parent using three graded scale (no pain, some pain, much pain). Nausea was assessed by a three graded Likert scale: no nausea, some nausea, much nausea. Nausea at home was assessed by parents using a 100 mm VAS scale. Hospital pain data were collected from self assessments, staff and parents and were transformed in one number. When self assessed data were missing, parent data primarily and staff data secondarily, were used in order to reduce the number of missing data. Statistics In study I differences was determined using paired t-tests for paired parametric data and Chi-2 tests for non-parametric data. Pearson correlations were calculated for parametric data. In study III the correlation between CBCL scores and PHBQ were determined by Spearman rank correlation. Comparisons between groups were done by Mann-Whitney test and Chi-square for frequencies. Any missing values in a PHBQ item was replaced with a value randomly chosen and reflecting the distribution of the item. In study III and IV, logistic regression was used to establish the association between demographic data and other risk factors and outcome. Primarily univariate analysis was performed and any risk factor that showed significant correlation to the total PHBQ score or any of its subscales were entered in the multiple regression model. Exploratory factor analysis and general statistics was analysed with SPSS , (SPSS Inc., Chicago, Il., USA ), and p values of < 0.05 were considered significant. Confirmatory factor analysis in study II was performed by structured equation modelling (AMOS 5.0 Smallwaters Corporation). 24

25 Results RESULTS Study I: Acute and postoperative pain in children Extent of acute pain. The responder estimated the number of children that a) had surgery in their department during the previous month; b) had some pain; and c) had moderate to severe pain despite pain treatment regardless the type of surgery. In total, 6344 children had gone through surgery during the previous month; 4602 (73%) were estimated to have some pain and 1056 (23% of those with pain) moderate to severe pain. There were no significant differences between nurse and physician estimates. Moderate to severe pain seemed to be more frequent in general surgery (34%) and orthopaedic (52%) departments (Figure 2), and was estimated to occur more often in departments with fewer children (p<0.01) (Figure 3). In departments Gen. Surg treating less than 36 children each month, 36% were estimated to have Plastic Surg. moderate to severe pain. Pain was less Orthopaed of a problem in recovery rooms than for other types of care (16% vs. 32% Anaesth reported moderate to severe pain). ENT Figure 2. Percentage of children in different department types with moderate to severe postoperative pain. Paed. Surg Gen. Paed 0,0 10,0 20,0 30,0 40,0 50,0 60,0 (%) (%) Figure 3. Fraction of children with moderate to severe postoperative pain according to how many children are treated each month Number of postoperative children 25

26 Results Pain for other reasons than surgery was reported in 766 cases. For 31% of these, the pain was estimated to be moderate to severe despite treatment and was most frequent in anaesthesia (58%) departments (Figure 4). More physicians than nurses estimated pain to be moderate to severe (31.6% vs. 29.6%) (95% CI: ). Gen. Surg Plastic Surg. Orthopaed Anaesth Figure 4. Acute pain of other origin than surgery. Fraction of children in different department types with moderate to severe pain. ENT Paed. Surg Gen. Paed 0,0 20,0 40,0 60,0 (%) Reasons for inadequate pain treatment. Almost half (45%) of physicians and nurses thought that pain could often or always be treated more effectively. The most frequent reasons for inadequate pain treatment, according to nurses, were insufficient prescriptions by physicians (21% often or always), child anxiety (19%) and parent anxiety (13%) (Table 2). Inadequate methods were reported as a common reason for inadequate pain treatment by 6% of physicians and 5% of nurses. Lack of time was reported by 2% of respondents. Communication and information problems between staff and child/parent were other reasons for inadequate pain treatment. Communication with child/parent was found a frequent reason by 5% of nurses and physicians and sometimes a reason by 45% of physicians and 48% of the nurses. 26

27 Results Table 2. Reasons for unsatisfactory effect of pain treatment. (paper I) Nurse Physician Sometimes Frequent n Sometimes Frequent n Reason (%) (%) (%) (%) Insufficient prescriptions Children's anxiety Parent's fear Other reason to pain Child does not tell Poor communication between parent and nurse Inadequate methods Insufficient information to child/parent Parent does not tell Not enough time Fear of side effects Insufficient information to staff Poor communication among the staff Pain is natural; not always necessary to treat Pain assessment. Pain assessments were performed regularly in 43% of all departments, but pain measurement with a validated pain measure was less frequent (Table 3). A threehour interval was commonly used (36%) except in recovery rooms where a onehour interval was used. Table 3. Use of pain measurement tools. (paper I) Age, years > 7 VAS 1% (2) 4% (6) 17% (26) 35%(54) Faces scale 7% (10) 11% (18) 18% (28) 8%(13) Behavioural observation scale 8% (11) 6% (10) 3% (5) 3%(5) Total number of answers Absolute numbers within brackets. 27