Parent satisfaction 1 year after adenotonsillectomy of their children

Parent satisfaction 1 year after adenotonsillectomy of their children

International Journal of Pediatric Otorhinolaryngology 56 (2000) 199 – 205 www.elsevier.com/locate/ijporl Parent satisfaction 1 year after adenotonsi...

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International Journal of Pediatric Otorhinolaryngology 56 (2000) 199 – 205 www.elsevier.com/locate/ijporl

Parent satisfaction 1 year after adenotonsillectomy of their children Markus Wolfensberger a,*, Jacques-Andre´ Haury b,1, Thomas Linder c,2 a

Department of Otolaryngology, Head and Neck Surgery, Uni6ersity Hospital, Petersgraben 4, CH-4031 Basel, Switzerland b Clinique La Source, A6. Vincet 30, CH 1004, Lausanne, Switzerland c Department of Otolaryngology and ENT, Head and Neck Surgery, Uni6ersity Hospital, CH 8091, Zurich, Switzerland

Abstract Background: Tonsillectomy is one of the most frequent as well as one of the most controversial operations performed in childhood. Objecti6e: To assess the expectations of parents before tonsillectomy and to assess their satisfaction 1 year after surgery. Study design: 664 children undergoing (adeno-)tonsillectomy were enrolled in a nation-wide prospective multicenter study. The child’s medical history, clinical findings, and indication for tonsillectomy were recorded by the physicians at the time of surgery. The parents were asked to fill out a questionnaire and to list all symptoms from which they expected relief at the time of surgery and to assess the subjective benefit of the surgery 1 year post-operatively. Five-hundred and seventy six of the 664 patients’ parents (87%) returned the follow-up questionnaire. Results: 88% of the (adeno-)tonsillectomies were performed because of documented recurrent febrile tonsillitis or obstructive symptoms such as sleep apnea or snoring with restless sleep and daytime irritability. The number of episodes of febrile sore throat dropped from a mean of 6.7 in the year prior to surgery to a mean of 1.5 in the year after surgery (P B0.001). Obstructive symptoms disappeared in 80% of cases, 524 parents (91%) were satisfied with the benefit, 159 parents (28%) regretted not having arranged to have surgery performed earlier. Conclusion: Our study shows that parents assess the outcome of tonsillectomy not with regard to one main symptom (e.g. recurrent sore throat) but with regard to a number of complaints. It also shows a high rate (91%) of parent satisfaction after tonsillectomy. For the indications studied, tonsillectomy remains the treatment of choice and should not be delayed or even denied to those children. © 2000 Elsevier Science Ireland Ltd. All rights reserved. Keywords: Tonsillectomy; Tonsillitis; Obstructive sleep apnea; Patient satisfaction

1. Introduction * Corresponding author. Tel: + 41-61-2654107; fax: +4161-2654029. E-mail addresses: [email protected] (M. Wolfensberger), [email protected] (J.-A. Haury), [email protected] (T. Linder). 1 Tel.: + 41-21-6413333; fax: + 41-21-6413366. 2 Tel.: + 41-1-2555860; fax: +41-1-2558959.

Tonsillectomy in children figures prominently in the list of ‘useless operations’ [1]. Unfortunately, the discussion concerning the appropriateness of tonsillectomy is often conducted in a biased manner. Is it justifiable to withhold tonsillectomy only because tonsillitis is a self-limiting

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and, with adequate antibiotic therapy, largely harmless disorder [2,3]? Is it preferable to prescribe antibiotics as often as eight times per year when drug resistance has become a serious concern? Is there ground for dismissing tonsillectomy categorically as a ritualistic procedure [1,4] only because the prevalence of patients who have undergone tonsillectomy displays differences between individual countries or social strata [5,6]? We consider surgery to be appropriate if the benefit for the patient clearly outweighs the risk. So far the literature has focused on the efficacy of tonsillectomy for the two most important indications (recurrent febrile tonsillitis [7,8] and obstructive sleep apnea [9– 13]) and on the risks of the procedure [14]. With the exception of a study by Conlon et al. [15] there is very little data in the English literature, however, on the subjective assessment of tonsillectomy by the parents of the children. The aim of this prospective study by the Tonsil Study Group of the Swiss Society of Otolaryngology, Head and Neck Surgery was to examine in a non-selected, consecutive group of pediatric tonsillectomies the parents’ expectations from the planned intervention and their assessment of the benefit of tonsillectomy 1 year after surgery.

the reasons for the planned surgery. They were informed that whether or not they participated in the study would in no way affect the care of their child and that their assessment would not become known to their doctor. At the same time the parents signed a form giving their consent to scientific evaluation of their children’s data and agreed to complete a follow-up questionnaire 1 year after surgery. These follow-up questionnaires were mailed by the study center in March 1998. The parents were asked to indicate whether or not each of the preoperative symptoms they had listed had become worse, remained the same or had improved to the extent that they no longer presented a problem since surgery. They were additionally requested to rate the effect of the surgery on the child’s general health. The three questionnaires used were developed for the present study. All forms were entered in a master computer file. The data was analyzed with the Prism™ statistical package (Version 2.0, GraphPad Software, Inc., San Diego, CA). The Wilcoxon test for paired random samples was used to check the significance of the differences in the frequency of throat infections prior and subsequent to tonsillectomy.

3. Results 2. Study design In 1996 all Swiss otolaryngologists were informed about the purpose of the planned study and invited to participate. Sixty-two (of 170) otolaryngologists in private practice, nine (of 10) teaching hospitals and all eight tertiary referral centers agreed to co-operate. The participants undertook to document all tonsillectomies performed between January 1 and March 31, 1997. They received a standardized form to document the patient’s medical history, clinical findings, indication for tonsillectomy and other surgical procedures performed simultaneously. Parallel to and independently of the physician’s documentation, the children’s parents were invited to participate in the study and to complete a questionnaire in which they were asked to tick the child’s symptoms and what they considered to be

The participating physicians performed a total of 701 tonsillectomies in the given time period. In 37 cases (5%) the parents did not fill in pre-operative questionnaire or refused to give their consent to the centralized handling and evaluation of the data. Thus, 664 children and adolescents (under the age of 16) could be incorporated in the study. Five-hundred seventy six of the 664 parents returned the follow-up questionnaire, which corresponds to a response rate of 87%. Of the 664 children 345 (52%) were boys and 319 (48%) were girls. At the time of surgery 20 children (3%) were younger than 4 years, 518 children (78%) were between 4 and 9 years, and 126 children (19%) were older than 9 years. The peak incidence was at 6 years. Physicians’ questionnaire: Physicians gave recurrent tonsillitis (defined as three or more episodes of febrile throat infections within a minimum

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Fig. 1. Frequency of sore throat episodes prior and subsequent to tonsillectomy for 399 children who had at least three episodes per year before tonsillectomy.

observation period of 12 months documented by the otolaryngologist or the referring pediatrician) as the indication for surgery in 385 (58%) of the children and obstructive tonsils in 199 (30%). This second group included 93 children (14%) whose parents had observed nocturnal apnea episodes and 106 children (16%) with other obstructive symptoms such as swallowing difficulties, hot potato voice, or snoring with irregular night-time sleep and daytime fatigue. Twelve percent of surgery was performed for miscellaneous reasons. The majority of the study participants routinely performed an adenoidectomy with the tonsillectomy, irrespective of symptoms. Therefore 86% of the children had an adenotonsillectomy, 12% had a tonsillectomy only. Parents’ questionnaire: The parents were not requested to indicate a diagnosis for having their children undergo tonsillectomy. Instead, they were asked to list all symptoms from which they expected relief after surgery. According to the

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parents’ questionnaires, 482 of the 664 children (73%) suffered from recurrent throat infections (mean of 6.7 episodes in the year prior to tonsillectomy). During the first 12 months after tonsillectomy, a mean of 1.5 such episodes was noted by the parents. This difference is highly significant (PB0.001). However, only 47% of the children were totally free from throat complaints. Nineteen percent recorded one, 12% two, and 33% more than two painful throat infections in the first year after tonsillectomy. Pre- and postoperative incidence is detailed in Fig. 1. According to the parents, 176 (27%) of the children suffered from worrying nocturnal interruptions in breathing. In 145 (82%) these episodes disappeared subsequent to tonsillectomy, in seven (4%) they were unchanged and in six (3%) they became worse. Eighteen parents (10%) did not make any comment. Snoring was observed in 417 children prior to tonsillectomy and disappeared in 346 (83%) subsequent to tonsillectomy. In addition to snoring, a total of 271 children endured irregular night-time sleep and/or daytime fatigue, irritability or decreased alertness. After tonsillectomy, 206 (76%) of these children enjoyed uninterrupted, quiet sleep and improved daytime alertness. Other symptoms often attributed by the parents to the enlarged or chronically inflamed tonsils of their children and which they expected to improve after tonsillectomy included distorted speech such as a hot potato voice (191 children), mouth breathing (325 children), halitosis (302 children), and chronic or frequent coughing (254 children). In the postoperative questionnaire, parents stated that these symptoms no longer presented a problem in 76–82% of the children (Table 1).

Table 1 Influence of tonsillectomy on various symptoms often associated with tonsil disorders or enlarged tonsilsa

Snoring Daytime fatigue/irritability Hot potato voice Mouth breathing Bad breath Chronic cough a

n

Better

Same

Worse

No answer

417 271 191 325 302 254

83% 76% 82% 78% 77% 76%

4% 17% 8% 9% 14% 12%

2% 1% 1% 1% 0% 3%

11% 6% 9% 12% 9% 9%

n= number of children who suffered from this symptom prior to tonsillectomy.

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The eating behavior of the children before and after tonsillectomy was also evaluated. Prior to surgery, 275 parents (41%) described their children’s appetite or eating behavior as poor. Postoperatively, the appetite was rated as better in one half and as unchanged in the other half of the children. Finally, all parents were asked to rate the effect of the tonsillectomy on the general health of their child. They were also asked, whether in view of the effects of the tonsillectomy they would have preferred to have surgery performed at an earlier stage. No response was obtained from 20 parents (3%). Seven parents (1%) were of the opinion that their child’s general health had deteriorated, 26 (5%) described no change and 524 parents (91%) considered their child’s well-being to have improved and were satisfied with the result. One hundred fifty nine parents (28%) regretted not having arranged to have surgery performed earlier. Fifty-three parents (9%) were not satisfied with the benefit of the tonsillectomy. They reported an average of 2.4 episodes of sore throat during the past 12 months (compared to 1.5 episodes in the entire study population). The same group of parents acknowledged an improvement with regard to snoring in 56% (vs. 83%), daytime fatigue in 9% (vs. 76%), mouth breathing in 12% (vs. 78%), halitosis in 26% (vs. 77%), and chronic cough in 12% (vs. 76%). No statistically significant difference was found between the parents’ satisfaction (both with regard to individual symptoms and to the overall assessment) of the children with and those without simultaneous adenoidectomy. Also, there was no statistically significant difference between the parents’ satisfaction of children who had their tonsils removed because of recurrent tonsillitis and of those children who were operated because of obstructive symptoms. Finally, there was no correlation between the parental satisfaction and the age of the child at the time of surgery. Ninety-nine parents (15%) used the free space available on the questionnaire to make a comment of their own. The majority reflected the improvements already outlined in the questionnaire. The most frequent positive comment

stressed the general improvement in the child’s development after tonsillectomy. Twenty-six comments were negative: 11 parents noted a shifting of the preoperative symptoms from frequent sore throats in the past to, for instance, recurrent coughing and sniffing after surgery. Four parents complained of a change in the pitch of their child’s voice (higher than before tonsillectomy), and two of a persistent nasal voice.

4. Discussion Tonsillectomy is one of the most frequent surgical procedures performed in childhood [5]. At the same time, however, it is one of the most controversial operations. In the present study an attempt was made to evaluate the parents’ expectations before tonsillectomy and their assessment of the benefit of tonsillectomy 1 year after surgery in a non-selected consecutive group of pediatric tonsillectomies. Ideally, the problem would have to be approached in a randomized clinical trial. However, the majority of the participating otolaryngologists in private practice were unable to randomly assign the treatment options and to withhold the surgery from a control group of patients. While tonsillectomy alone is the rule in adult patients, children often undergo adenoidectomy at the same time. In fact, adenoidectomy was routinely performed as part of the procedure by most study participants irrespective of symptoms (86% of cases). This explains why no difference in outcome was found between children with and without adenoidectomy. Most tonsillectomies are performed because of recurrent acute tonsillitis [5,7,16–19]. In 1930, Kaiser [20] could show that the number of annual occurrences of tonsillitis decreased significantly after tonsillectomy. In 1967, Mawson and colleagues [21] documented that the efficacy of tonsillectomy grew with the number of acute throat infections suffered per year prior to tonsillectomy. In 1969, Roydhouse [8] demonstrated in a controlled study that the annual number of throat infections in children who had undergone tonsillectomy was significantly lower than in children

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who were scheduled for, but had not yet undergone tonsillectomy. However, the annual number of throat infections in the children who had undergone tonsillectomy was still significantly higher than in control children for whom tonsillectomy was never considered. Finally, Paradise and coworkers [7] succeeded in verifying the efficacy of tonsillectomy for children with frequent tonsillitis in a randomized study. In our study the number of acute throat infections dropped from a mean of 6.7 per year prior to tonsillectomy to a mean of 1.5 in the first year after tonsillectomy (P B 0.001). This is a relevant improvement, even if one takes into account [19] that the number and severity of episodes of tonsillitis recorded by physicians are usually lower than that indicated by the parents (in our study the mean number of tonsillitis episodes documented by the physicians was 3.9 per year, whereas the parents reported 6.7 episodes per year prior to surgery). However, as Paradise and co-workers [22] have pointed out, ‘the question whether documented histories of recurrent throat infections are more predictive than those undocumented is unanswered’. The second most common reason for tonsillectomy is obstructive tonsils [16 – 19]. This includes children with a verified obstructive sleep apnea syndrome, children who snore, sleep poorly and suffer from daytime fatigue or irritability without documented occurrence of apnea, as well as children who eat poorly due to their enlarged tonsils or have a hot potato voice [18]. The golden standard for verifying obstructive sleep apnea is polysomnography. Considering the fact that about 6% of all children at pre-school age snore and that night-time interruptions in breathing is observed in around half of these cases [23,24], it is evident that clarification by polysomnography can scarcely be performed in every suspected case. While snoring alone correlates poorly with an obstructive apnea syndrome, the correlation is good in the case of regularly observed breathing disorders [25,26]. Both obstructive sleep apnea and the complex of symptoms including snoring, restless sleep, and daytime fatigue can be largely eliminated by tonsillectomy [9 – 13,26,27]. These symptoms disappeared in 76% of our patients. The interruptions in breathing which are particu-

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larly worrying for parents disappeared in 80% of the children. Our observation that half the children eat better after tonsillectomy coincides with reports given in the literature [16,21]. Various authors have been able to objectively demonstrate a weight and height increase exceeding the norm after tonsillectomy [9,10,28,29]. Complications after surgery were not the subject of the present study. There was no mortality and only few parents mentioned minor changes in their child’s voice or persistent increased nasality. These problems have also been reported in the literature [30]. No attempt was made to verify whether these changes might be due to unrecognized submucosal palate clefts. The complications subsequent to tonsillectomy are, however, well-known from the literature [14]. The mortality rate totals approximately 2–3 per 100 000 operations and hence presumably lies in the range of the risk inherent in anesthesia [31,32]. The most common complication is postoperative bleeding, with an estimated risk of 3–6% [14,16,33]. The present study was not designed to demonstrate the effectiveness of tonsillectomy but to focus on the hitherto neglected assessment of the benefit of tonsillectomy by the parents. In our study 91% of the parents were satisfied with the result of tonsillectomy. If we assume that all parents who did not return the follow-up questionnaire were not satisfied with the benefit of the tonsillectomy the satisfaction rate would still be 79%. Twenty-eight percent regretted that the tonsillectomy had not been performed earlier. These results are comparable with other studies [15,16]. Whereas the literature (which, of course, reflects the physicians’ thinking) suggests that tonsillectomies are performed for a single reason (e.g. recurrent infections, obstruction), our study shows that virtually all parents expect the tonsillectomy to remedy several ‘difficulties’. Even if tonsillectomy is primarily performed to eliminate recurrent throat infections, parents also expect that the snoring or bad breath will disappear, the appetite improve or that the child will sleep better. Accordingly, the parents’ satisfaction cannot be achieved by simply reducing the number or

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severity of throat infections alone (a result which can also be obtained by prescribing antibiotics). Unless at least some of the additional symptoms are also improved, the parents are not satisfied. This is illustrated by the fact that the non-satisfied parents reported almost the same benefit as the satisfied parents with regard to the reduction in the number of episodes of sore throat but only very limited success with regard to symptoms such as snoring, daytime sleepiness, mouth breathing, halitosis, and chronic cough. One might also speculate that parents who were not satisfied with the reduction of the episodes of sore throat were less willing to admit an improvement of other symptoms. Finally, one might argue that the rate of satisfaction was inappropriately high, because (a) ‘patients when determining their satisfaction with the care they have received are more likely to focus on the present state of health than to consider the extent of improvement they have enjoyed’ [34]; (b) ‘patients tend to assess the results of surgical interventions too positively’; and (c) ‘parents wanted the tonsillectomy and are therefore likely to be satisfied with the result’ [35]. Unfortunately not even a randomized trial could really eliminate these problems because obviously the parents would know whether their child has been operated or not.

the physician as a result of various symptoms. Therefore, they assess the outcome of surgery not only with regard to one main symptom, but also with regard to several symptoms. True, they also hope for a reduction in the number of sore throat episodes, but they are only really satisfied if the snoring or day time irritability disappear, eating habits improve, or the bad breath vanishes. Our study demonstrated a high rate of parents’ satisfaction (91%) with the outcome of tonsillectomy. Nowadays, the risks involved in tonsillectomy are extremely small, and no major long-term negative consequences are known. With a correct indication tonsillectomy remains an appropriate procedure and must not be denied children with corresponding symptoms.

Acknowledgements The Study was funded by the Office for Quality Control of the Swiss Society of Otolaryngology, Head and Neck Surgery. Members of the Tonsil Study Group of the Swiss Society of Otolaryngology, Head and Neck Surgery: M. Buchi, M. Caversaccio, C. Chatelain, C. Decurtins, D. Fanconi, K Gschwend, J.-A. Haury, F.J.W. Lang, T.H. Linder, P.M. Ott, J. Rickenmann, J. Vavrina, M. Wolfensberger (Chairman).

5. Conclusions References The main indication for tonsillectomy in childhood continues to be recurrent febrile tonsillitis with ]3 episodes per year. In the first 12 months a significant reduction in episodes of sore throat can be expected from the surgical procedure. The second most common indication for tonsillectomy is obstructive tonsils. This includes not only obstructive sleep apnea, but also the complex of symptoms including snoring, restless sleep, irritability or decreased alertness. A significant improvement of these symptoms was observed in 80% of the children. From the physician’s viewpoint, tonsillectomies are commonly performed on the basis of a single diagnosis. However, the child’s parents consult

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