The eXpectations of Parents regarding Anesthesiology Study (XPAS) from a parental perspective: a two‐phase observational cross‐sectional cohort study

Uncertainty concerning anesthetic procedures and risks in children requiring anesthesia may cause concerns in parents and caregivers.


Results:
In Phase 1, 22 parents were involved in the development of the questionnaires.The three questionnaires contained 43 questions in total, of which 10 had been proposed by parents.In Phase 2, 78% (474 out of 934) parents participated at T1, 36% (610 out of 1705), at T2 and 34% (546 out of 1622) at T3. Parental satisfaction scores were rated on a visual analogue scale for the preanesthesia assessment with a median of 87/100, and with a median of 90/100 for the anesthetic procedure (0: not satisfied and 100: satisfied).Parental concerns were rated with a median of 50/100 (0: no concerns and 100: extremely concerned).Parental answers from the questionnaire at T2 revealed significant knowledge deficits, with only 73% reporting that the anesthesiologist was a physician.Parents preferred to receive more information about the procedure, especially regarding the intended effects and side effects of anesthesia.
Section Editor: Joseph Peter Cravero

| INTRODUC TI ON
Preanesthesia screening in the outpatient setting is an approach to improve clinical care.During this visit, the patients' health is assessed in relation to the risks of surgery and anesthesia, and informed consent is obtained from the patient. 1 An optimized perioperative plan and a risk inventory are made, based on the patient's medical records, clinical interviews, physical examination, and additional tests. 2prerequisite for obtaining informed consent is that the patient fully understands the medical care provided by the anesthesiologist.In pediatric medical care, this concerns both the patient and their parents or caregivers. 1 The information provided during the preanesthesia assessment mainly involves the operative procedure and the induction of anesthesia, whereas other responsibilities of the anesthesiologist, such as monitoring the hemodynamic vital functions, are often not explained. 17][8] The latter is of importance, since preoperative parental anxiety is strongly associated with their child's anxiety. 9,10[5][6][7][8] To our knowledge, there is a lack of studies that have included the point of view of parents in the development of questionnaires regarding their expectations and experiences regarding pediatric anesthesia. 11Insight into parental perspectives about pediatric anesthesia would enable the identification of areas of parental concerns which would allow for anxieties to be addressed and allayed proactively. 12e aim of our study was two-fold: first, we sought to explore parental expectations and experiences regarding their child's anesthesia.Second, we sought to quantify the prevalence of these expectations and experiences in a population of parents whose children were undergoing anesthesia at a tertiary pediatric hospital.
Post hoc, we analyzed the associations between parental concerns with age of the parents and patients, the education level of the parents, and the degree of severity of the medical procedure.

| ME THOD
The study protocol was approved by the local Medical Ethics Committee of Erasmus Medical Center (MEC-2019-0240, Rotterdam, the Netherlands).Informed consent was obtained from the parents before the start of each questionnaire.This observational cross-sectional cohort study was set up according to the Equator Network STROBE guidelines.In consecutive order, parents and caregivers of pediatric patients scheduled for anesthesia (hereafter referred to collectively as "parents") were invited to participate.The study had two phases.The aim of Phase 1 was to develop questionnaires using information from a focus group discussion and individual interviews with parents. 13In Phase 2, the XPAS (eXpectations of Parents regarding Anesthesiology Study) questionnaires developed in Phase 1 were distributed among a larger group of parents (Figure 1). 12,14e study was conducted from March 2019 to January 2020 in a children's tertiary referral university hospital (Erasmus MC-Sophia Children's Hospital, University Medical Center, Rotterdam, The Netherlands), which serves the inhabitants of the southwest part of the Netherlands.
As standard care in our clinic, children and their parents visit with an attending anesthesiologist or anesthesiology resident at the preanesthesia outpatient clinic, within a maximum of 6 months before a scheduled medical procedure requiring anesthesia.All patients visit the outpatient clinic, except those undergoing an emergency surgery, patients who are bedridden, or patients who were screened less than 6 months beforehand for a similar procedure.The group who had recently undergone surgery is assessed through a telephonic consultation with the parents.
During the preanesthesia consultation, parents and patients receive information about the anesthetic procedure.At the end of the consultation, paper brochures with information about anesthesia, analgesia, side effects, and the role of the anesthesiologists are provided.Due to high case volumes, the anesthesiologist performing Conclusions: Overall, parental satisfaction scores regarding the pediatric anesthesiology procedure were high, with a minority expressing concerns.Parents indicated a preference for their child's anesthesiologist to visit them both before and after the anesthetic procedure.Parental expectations regarding anesthesia did not completely correspond with the information provided; more information from the clinician about the intended effects and side effects of anesthesia was desired.
anesthesiology, expectations, parents, patient satisfaction, pediatrics, preoperative care the consultation in the outpatient clinic is generally not the same provider performing the anesthetic procedure. 15On the day of the procedure, parents meet the attending anesthesiologist assigned to their child's case first at the holding area or in the operating room.
One parent is allowed to be present during the induction of anesthesia.The anesthesiologist only visits or contacts the patient after the anesthetic procedure if complications occur, or out of personal preference.

| Study population
From March 21, 2019 to May 10, 2019, during standard opening hours, one researcher (DS) invited all consecutive parents who visited the preanesthesia outpatient clinic or whose child had been hospitalized to participate in a focus group discussion or to be interviewed individually.As standard of care, parents had to complete a standardized questionnaire for the preanesthesia outpatient clinic, which contained questions on patient demographics and medical history.The standardized questionnaire was available only in the Dutch language at an intermediate level (B1). 16If parents experienced difficulties understanding or completing this questionnaire, the parent was deemed ineligible and excluded from the study.

| Study protocol
The focus group discussion was led by a psychologist (KD) in the presence of DS and a pediatric anesthesiologist (JdG) and was audiorecorded for offline analysis afterwards.The main purpose of the focus group discussion was to obtain information on parental satisfaction with pediatric anesthesiology, to understand if certain aspects of perioperative care were not clear, and to generate important topics for subsequent questionnaire development.Parents were encouraged to share their feelings, thoughts, opinions, emotions, and concerns regarding anesthesia for their child.The discussion was structured into the following topics: knowledge and expectations of anesthesiology, concerns regarding pediatric anesthesia, and the need for information and preparation for anesthesia.
To increase the number of participants in Phase 1, one researcher (DS) approached parents consecutively whose children were admitted to the hospital surgical ward between April 25, 2019 and May 10, 2019 in individual semistructured interviews on the same topics discussed in the focus group (Figure 1A).
The audio-recorded focus group discussions and individual interviews were transcribed and analyzed by categorizing each statement.Subsequently, three questionnaires were designed based on the information acquired in the focus group discussion and individual interviews.The questionnaires were sent for feedback to parents who had participated in the focus group and individual interviews, as well as to other parents who were willing to comment.Parents could comment on the relevance and clarity of the questions and the desirability for more multiple-choice options.They were also invited to give feedback on the length of the questionnaires, the logical order of the questions, and to suggest topics that should be added.
The comments were incorporated into the final version of the XPAS questionnaires (Figure 1A).

| Phase 2: Assessing the parent-reported questionnaires
The XPAS questionnaires 1, 2, and 3 of Phase 2 were delivered to separate cross-sectional samples at three distinct time points to the universe of parents of consecutive children undergoing anesthesia between July 2, 2019 and January 10, 2020.Though a child could have been accompanied by more than one parent, no more than one questionnaire at each time point was filled out for each child.

F I G U R E 1
Flowchart study protocol for Phase 1 and Phase 2.
XPAS questionnaire 1 (Q1) was presented on paper to all parents in the waiting room of the preanesthesia outpatient clinic by a clinical assistant upon registration, prior to visiting with the pediatric anesthesiologist (T1).Prior to the consultation with the anesthesiologist, the completed questionnaires were collected by the same clinical assistant.This questionnaire was not emailed, since the preanesthesia outpatient clinic allows consultations without appointments and thus many consultations were not scheduled.
XPAS questionnaire 2 (Q2) was emailed 2 days after the preanesthesia outpatient clinic visit (or after the telephonic consultation) to the parent registered as contact person of the patient (T2).XPAS questionnaire 3 (Q3) was emailed 4 days after the anesthetic procedure to the parent registered as the contact person of the patient (T3, Figure 1B).A reminder email was sent a week later for both digital questionnaires, which could be completed up to 2 weeks after the initial delivery.Parents received each XPAS questionnaire once, even if their child visited the preanesthesia outpatient clinic or had an anesthetic procedure more than once in the defined period.Since parents could be introduced into this study at different time points, not all parents received all three questionnaires.Parents who declined to fill in a questionnaire or could not complete the questionnaires because they could not read Dutch language at an intermediate level were excluded.For Q2 and Q3, parents whose personal email addresses were not available in the hospital electronic system were excluded.
Study data were managed using electronic data capture tools hosted at Erasmus Medical Center (Gemstracker 17 ).The questionnaires were distributed using the online open-source software for online surveys LimeSurvey (https://www.limesurvey.org).
In addition, basic questions regarding parental demographics (age, sex, and highest education level), child's demographics (age and details of the medical procedure), and previous parental satisfaction with pediatric anesthesiology were included in the first questionnaire the parents received (see Appendices 1 and 2); this demographic data were then linked to responses to Q2 and Q3 via unique respondent identifiers.
In each of the three XPAS questionnaires, the last section contained the standardized questionnaire PROMIS v1.0 Anxiety Short Form 8a 18 with eight questions regarding the level of anxiety parents had experienced for the past 7 days.The scores were translated into T-scores, with a mean of 50 and a standard deviation (SD) of 10.A T-score of 50 represents a normal anxiety state (not anxious).The higher the T-score, the higher the anxiety state.
The degree of severity for each medical procedure the patient underwent was based on the sum of scores of the duration  For Q2, we performed statistical analyses using Spearman's correlation coefficient to determine the relationship between the VAS score of parental concerns with age of the parents and patients, the sex and education level of the parents, and the degree of severity of the medical procedure of the patients.The Wilcoxon/Mann-Whitney U test was used to compare the VAS scores of parental concerns between male and female parents.Nonparametric tests were selected because it was anticipated that the data would violate the assumptions of normality.A p-value of <0.05 was considered statistically significant.

| Phase 1: Development of the questionnaires
Three out of approximately 250 invited parents participated in the focus group discussion and 16 parents were individually interviewed.Five parents-two of which had participated in the focus group discussion-reviewed the developed questionnaires.Three of these five parents had neither participated in the focus group discussion nor in individual interviews.The main reason for nonparticipation in Phase 1 was parental unwillingness to commute to the hospital for the purpose of research.Thirteen of all 22 parents (59%) who participated in Phase 1 were female (Table 1) with a median age of 41 (38-48) years.Their children were scheduled for medical procedures with the degree of severity of minor (2/15, 13%), intermediate (8/15, 50%), and major (5/15, 31%).

| Knowledge and expectations of general anesthesiology
Among parents whose child had anesthesia previously, most parents reported positive past experiences.Two couples without previous experience stated that they were nervous for their child's procedure and did not know what to expect.Parental knowledge of the anesthesiologist's responsibilities during a medical procedure varied, from only knowing about induction of anesthesia to the many needed requirements for maintaining hemodynamic stability.

| The need for information and preparation of anesthesia
Parents reported that they received most information during the preanesthesia assessment or through brochures distributed by the Department of Pediatric Anesthesiology.Several parents stated they would like to receive information through other mediums as well.Their suggestions were incorporated in the multiple-choice answers in the Phase 2 XPAS questionnaires.Nevertheless, two couples stated that their questions before the procedure were left unanswered.Parents had different opinions on which topics to be discussed during the preanesthesia assessment.

| XPAS questionnaires
0][21] The focus group discussion and individual interviews resulted in the development of seven additional questions and answer options of three multiple-choice questions.The questionnaires contained four types of questions: basic questions (parental demographics and satisfaction with pediatric anesthesia), knowledge and expectations of anesthesiology, concerns regarding their child receiving anesthesia, and need for information and preparation for anesthesia (Appendix 3).The researchers used a combination of dichotomous (yes/no), multiple-choice, and 10-centimeter visual analogue scales (VAS, with a score from 0 to 100) for the answer responses.

| Demographics
The three questionnaires were completed by mostly women (ranging from 79% to 82% of the respondents), who had finished middle secondary education (range: 39% to 42%) and whose median age was 37 (Q1) and 38 (Q2, Q3) years.The median age of the child undergoing anesthesia was 5 years old in Q1 and 6 years old in Q2 and Q3.The degree of severity of the medical procedure was mostly rated as minor in Q1 and Q2 (58% and 54%, respectively) and intermediate in Q3 (42%, Table 1).Table 1).

| XPAS
Almost all suggested topics to be discussed at the preanesthesia assessment were rated with a median score of 80 or higher, indicating a preference for these topics to be discussed (Figure 2; a score of 100 signified that the topic must be discussed).The one exception was the topic "responsibilities of an anesthesiologist during the medical procedure" (median score: 69).

Figure A2
), and the data of 603 questionnaires were included for analysis.In total, 3% (57/1705) of the parents declined to participate, and 10% (206/2057) email addresses were missing in the patient registration system.The mean parental anxiety T-score was 52 (SD 9, Table 1).
Seventy-three percent of the parents reported that an anesthesiologist was a physician, while 12% reported an anesthesiologist was a nurse (Figure 4).Ninety-two percent were aware that anesthesiologists provide and maintain anesthesia, while 41% knew that this includes intubation and 22% knew that this includes transfusing blood to the patient (Figure 5).
Parents rated their need for information about the responsibilities of an anesthesiologist with a median score of 52 [12-78] (where 100 signified that the parent felt that this information must be discussed) and preferred to receive this through informational brochures (55%), at the preanesthesia assessment (42%) and through the hospital's website (36%, Appendix 5, Figure A4).
The median score for parental concerns regarding their child receiving anesthesia was 50 [15-74] (where 100 signified extremely concerned, Table 2).There was a significant decrease in VAS for concerns with an increase in the age of the parent (Spearman's ρ −0.113, p <0.012) and increase in the age of the child undergoing anesthesia (Spearman's ρ −0.149, p < 0.001).The VAS for concerns also had a significant increase with increase in degree of severity of the medical procedures of the patients (Spearman's ρ −0.093, p < 0.039).
There was no significant relationship between the sex and the education level of parents in relation to VAS concerns.Forty percent of the parents indicated that their concerns were related to the stress invoked by their child undergoing the anesthetic procedure and stated this was difficult to ease.Moreover, 17% would have liked to speak to the anesthesiologist assigned to their child just before and/ or after the anesthetic procedure (Appendix 6).
More than a quarter of the parents stated they did not know whether anesthesia would cause short-term problems (28%), longterm problems (28%), or negatively affect neurodevelopment (34%, Table 2).Fifteen percent of the parents suspected that anesthesia has short-term consequences, such as nausea, fatigue, Previous anesthesiologic care at medical procedures was stated as from before the recent anesthesiologic care.
Satisfaction with the anesthesiologic care during the recent medical procedure was rated with a median of 90 [80-100] (Fig- Parents reported multiple methods for preparing their child for anesthesia: including attending the preanesthesia assessment (69%), reading informational brochures (32%), and accessing the hospital's website (21%, Appendix 7).Sixteen percent of the parents did not prepare themselves; 69% of them stated they already had experiences with their child receiving anesthesia.
Most parents prepared their child for the anesthetic procedure by explaining the whole procedure to their child themselves (45%, Appendix 8), while 34% of the parents refrained from preparing their child; for instance, because the child was too young to understand or because the child had previous experiences with anesthesia.

F I G U R E 4
Descriptions of an anesthesiologist according to parents.

| Parental satisfaction
Overall, in our study, parental satisfaction around the pediatric anesthesiology procedure were positive, and participants expressed satisfaction with the pediatric anesthesiologic care.These results are comparable to other observational studies from the United States and Italy (both conducted at tertiary referral university hospitals), which showed similarly high parental satisfaction scores regarding pediatric anesthesiology, with a mean of 9.0 or higher out of 10 for every evaluated area. 22,23

| Parental knowledge and expectations of anesthesiology
We found that more than a quarter of the parents (27%) did not know that their anesthesiologist was a physician.We additionally found that parents were not fully aware of the responsibilities of an anesthesiologist.In a previous study at a University Hospital and Children's Hospital in Lithuania, 22% of the parents indicated they did not know that anesthesiologists were physicians. 19Studies in adult patients exhibited similar results: a study from hospitals in Australia, Germany, and United States showed that a substantial percentage of patients did not know that an anesthesiologist was a physician (ranging from 17% to 42%). 21Another study in adult patients scheduled for elective surgery concluded that the patients' knowledge of the anesthesiologist's responsibilities was limited; 14% of the respondents did not know that anesthesiologists have medical degrees. 20In spite of the documented lack of knowledge on the responsibilities of an anesthesiologist, the parents in our study were not very interested in receiving more information on the topic.We recommend that as a principle of informed consent, parents should be fully informed about the responsibilities of the anesthesiologist prior to consenting to their child's anesthetic procedure.

| Parental concerns regarding pediatricanesthesia
From the questionnaire results, we found that the parents were in general not very concerned nor anxious about their child's anesthetic procedure.This finding is in contrast to other studies, in which parents reported perioperative anxiety regarding the surgery, anesthesia, postoperative pain, and hospitalization. 4,8,24 a study from Great Britain's Royal Aberdeen Children's Hospital, 61 out of 100 parents stated they were anxious for their child receiving anesthesia; for nearly half of these parents, their anxiety was stated as quite or very anxious.These parents were approached as their child was admitted to the hospital for their surgery. 4The discrepancy with our findings could be due to the difference in assessment timing.Parents in our study did not complete the questionnaires on the day of the anesthetic procedure.
Our questionnaires were sent after visiting the preanesthesia outpatient clinic (which was usually a few weeks before the procedure), and 4 days after the procedure.Parents who admitted being anxious preoperatively stated they would like to have a talk with the anesthesiologist just before or after the anesthetic procedure.
Therefore, we encourage anesthesiologists to make contact before and after the procedure with parents to alleviate anxiety.In clinical practice, anesthesiologists evaluate the procedure at the end of surgery with the surgery and anesthetic team (as part of a sign-out of procedure).In this process, postoperative instructions for nurses and parents are recorded in the electronic health record keeping system before the patient is transferred to the recovery room.In most cases, the anesthesiologists do not have the opportunity to visit the patient and their parents after discharge from the recovery room, because they are occupied with the next procedure.Unfortunately, in this study we did not collect data regarding the frequency and content of postprocedural visits by anesthesiologists, nor rates of complications.
The present results show that only a low proportion of parents indicated being concerned about the effects on anesthesia on short-term (15%) and long-term (5%) health outcomes, and on neurodevelopment (3%).By contrast, in a study at a Children's Hospital in Singapore, 20% of the parents were very concerned that general anesthesia would affect their child's neurodevelopment.
These parents were approached on the same day of their child's surgical procedure, in the waiting room of the operating theater or in the recovery area.

| Parental need for information and preparation for anesthesia
In the present study, parents overwhelmingly stated they would like to be informed during the preanesthetic assessment about all subjects that were mentioned in the questionnaire, though fewer reported wanting to know about the responsibilities of an anesthesiologist.Similar results were observed in a study from another university hospital in the Netherlands, where information about induction, side effects of anesthesia, emergence from anesthesia, and pain relief was desired 79% to 81% in parents. 25A study about parental recall of anesthesia information found that most parents did not have a complete recall and understanding on the following topics: anesthesia plan (46%), its risks and benefits (11%), pain management (42%), and side effects of pain treatment (4%). 5 Our results indicate that parents preferred to receive information through written informational brochures, rather than verbally.However, we did not ask parents if they would prefer to receive these brochures on paper or electronically.Of note, most parents considered themselves prepared for their child receiving anesthesia by attending the preanesthesia assessment, which underscores the importance of providing information to parents in that setting.

| Strengths and limitations
The primary strength of this study is the involvement of parents in the development of the questionnaires, in which we included the point of view of parents regarding their expectations and experiences regarding pediatric anesthesia.Furthermore, our study addressed parental experiences throughout the entire anesthesiology trajectory with multiple time points: from expectations beforehand, to the preanesthetic assessment, during the waiting time until the anesthetic procedure, and after the anesthetic procedure itself.
There were several limitations that should be addressed.Although we invited approximately 250 parents to participate in the focus group discussion, only three of them were willing to participate (Phase 1).This could have led to selection bias, since these three parents already had many experiences with pediatric anesthesia.To compensate for this, we conducted individual interviews with 16 additional parents with a varying range of experiences with pediatric anesthesia.Therefore, the questionnaires were based on both the focus group and individual interviews of parents.Despite efforts to maximize participation, the low participation rate in Phase 1 undoubtedly led to bias in questionnaire development.However, we are unable to comment on the bias because we did not collect information on the parents who declined to participate.We would recommend offering incentives for participation in future studies to increase participation rates. 26e questionnaires developed in this study were not previously validated in an external population, since the intention of this study was partially exploratory: to assess the needs of parents in order to improve information provision in pediatric anesthesia.To our knowledge, these are the first questionnaires focusing on the parental needs and concerns regarding pediatric anesthesia.Because we wished to limit redundant questions and were not able to test questions without exposing respondents to knowledge about anesthesia, it was not practical to validate questions in the context of this study.However, the methods by which the questions were developed ensured that they exhibited face validity.Future validation of the questionnaires is recommended.
In Phase 2, the response rates of the digital Q2 and Q3 (respectively, 36% and 34%) were much lower than the response rate of paper Q1 (78%).This nonresponse bias most likely contributes to biased estimates, but the direction of the bias is unknown.Parents were possibly more willing to complete a questionnaire when asked personally while waiting at the preanesthesia outpatient clinic.Q2 and Q3 could logistically not been administered in person and were therefore sent via email. 27Since the parental educational level and the type and severity of the children's surgical procedures were similar among the three different cohorts, we assume that the different response rates were not a function of these demographic and procedural characteristics.
9][30] Selection bias may have occurred in this study during recruitment.We excluded a minority of parents who were not able to read Dutch adequately (Q1: 10%), and we excluded additional parents without an email address registered in the electronic medical record (Q2: 10% and Q3: 18%).To ensure representativeness in future studies, other methods to minimize sample attrition should be explored.
Lastly, we caution that the results may not be generalizable to other institutions, as the results presented here are from one tertiary pediatric referral university hospital.Nevertheless, the results from our study are comparable to the results from other studies.
Future studies should explore experimental concepts to improve communication between anesthesia providers and parents.While the current research evaluated the expectations of parents, a further step would be to evaluate the children's expectations of and experiences with pediatric anesthesiology.

| CON CLUS ION
In conclusion, this study provided new insights regarding parental experiences with pediatric anesthesiology through the development and fielding of questionnaires designed with parental input.Overall, parental satisfaction scores concerning the pediatric anesthesiologic procedure were high, with few notable concerns.Parents who completed the questionnaires were not well informed about the responsibilities of an anesthesiologist, though they reported less interest in learning about this compared to other aspects related to their child's anesthetic procedure.Nevertheless, parents stated that they would have liked more personal interaction with their child's anesthesiologist, which should be encouraged among anesthesiologists.Though this may be impractical on the day of the procedure due to scheduling constraints, we believe that increased personal interactions between anesthesia providers and parents or patients can serve to both increase understanding of the anesthesiologist's role and enhance the informed consent process.

ACK N OWLED G M ENTS
This study was supported by the Erasmus Medical Center-Sophia Children's Hospital, Rotterdam, The Netherlands.

FU N D I N G I N FO R M ATI O N
Departmental sources only.

CO N FLI C T O F I NTE R E S T S TATE M E NT
Dr. Jurgen de Graaff is an editor at Pediatric Anesthesia.

A PPE N D I X 1 XPAS questionnaires, original Dutch version
# Questions that return in other questionnaires if they were not answered before

XPAS questionnaire 1
Kunt u aangeven of u deze vragenlijst alleen of samen met uw partner heeŌ ingevuld?Als u het samen met uw partner invult, dan kunt u meer antwoorden per vraag geven (door meer vakjes aan te kruisen of meer streepjes te plaatsen).# Questions that return in other questionnaires if they were not answered before # Questions that return in other questionnaires if they were not answered before # Questions that return in other questionnaires if they were not answered before 12. Hoe heeŌ u de anesthesie* bij uw kind toen ervaren?Plaats een streepje op de balk in de richƟng waar uw ervaring het meest mee overeenkomt: # □ Ik geef hier liever geen antwoord op.
13. Zou u meer willen weten over de werking en bijwerkingen van de anesthesie medicijnen op uw kind?Plaats een streepje op de balk in de richƟng in welke mate u graag informaƟe over een onderwerp wilt ontvangen.
2. Is it clear for you what the anesthesiologist will do on the day your child will undergo the medical procedure?□ Yes, this is completely clear □ Yes, but I sƟll have some quesƟons unanswered, such as… □ No, I sƟll have a lot of quesƟons, such as… □ No, I received some informaƟon from the anesthesiologist, but I did not understand this informaƟon □ No, but I do not really need to know that □ I prefer not to answer this quesƟon.Please give an explanaƟon of this experience: □ I prefer not to answer this quesƟon.Please give an explanaƟon of this experience: □ I prefer not to answer this quesƟon.
3. Did you prepare yourself for your child receiving anesthesia (narcosis, mild sedaƟon, epidural or spinal puncture) before the medical procedure?You can select more than one opƟon.□ I did not prepare myself □ Yes, through the anesthesiologist at the preanesthesia assessment □ Yes, through another physician/specialist □ Yes, through informaƟonal brochures of the hospital □ Yes, through the hospital's website □ Yes, through public internet, books and/or magazines □ Yes, through family, friends and/or acquaintances □ Other, namely… □ I prefer not to answer this quesƟon.

Legend
Basic questions Inserted primary by the researchers Inserted after literature research Inserted after the focus group meeting and interviews Multiple choice answers originated from the focus group meeting and interviews Inserted after receiving feedback □ Demographic questions and satisfaction with pediatric anesthesia □* Questions that return in other questionnaires if they were not answered before • Knowledge and expectations of anesthesiology ◊ Concerns regarding their child receiving anesthesia ▲ Need for information and preparation for anesthesia Response rate: 34%

(
<1 h = 1 point, ≥1 h = 3 points, and unknown = 0 points), postoperative admission (outpatient department = 1 point, general hospital ward = 2 points, intensive/high care unit = 3 points, and unknown = 0 points), and indication of emergency (no emergency = 1 point, emergency = 3 points, and unknown = 0 points).The points were added up and classified into degrees (minor severity 0-3 points, intermediate severity 4-6 points and major severity 7-9 points).If a patient scored 3 points on at least one of the items, they were automatically assigned a minimum degree of "intermediate severity".
All analyses were performed using the IBM SPSS statistical software (version 25).The collected data of each XPAS questionnaire (Q1, Q2, and Q3) were analyzed as separate cohorts.Descriptive analyses were used to analyze the quantitative data from the XPAS questionnaires.Data are presented as median and interquartile range [IQR].Questions left unanswered were considered missing data.

a
Two parents who participated in the focus group gave feedback as well.Thus, in total, 5 parents gave comments on the questionnaires.b Median [IQR25-IQR75].

3. 3 |
Concerns regarding pediatric anesthesiaParental concerns varied from not being concerned at all to being very concerned.They proposed different options to reduce these concerns, which were used for the multiple-choice questions in the Phase 2 XPAS questionnaires (Appendix 3).Factors that had positively influenced their experiences were incorporated as multiple-choice answers in the Phase 2 XPAS questionnaires as well.

questionnaire 1 Parents
Figure A1).For parents who filled out the questionnaires alone, the mean parental anxiety T-score was 49 (SD 14); among parents who completed the questionnaire together, the mean T-score was 48 (SD 15, and anxiety.Five percent suspected long-term consequences of anesthesia, such as the child's fear for subsequent anesthetic procedures or problems with concentration or sleep.Only 3% of the parents thought that anesthesia could harm their child's neurodevelopment.Most of the parents would have liked to receive F I G U R E 2 Boxplots of the visual analogue scale for subjects to discuss during the preanesthesia anesthesiology assessment with the pediatric anesthesiologist according to parents.Possible long-term effects of anesthesia post medical procedure Possible short-term effects of anesthesia post medical procedure Possible side effects of anesthesia Different options for pain treatment Tips for parents to influence their child's behaviour and Analogue Scale: 0 = This does not need to be discussed, 100 = This must be discussed F I G U R E 3 Boxplots of parents' satisfaction scores, rated on a visual analogue scale.Q2: XPAS questionnaire 2-2 days after the preanesthesia outpatient clinic visit or after the telephonic consultation.Q3: XPAS questionnaire 3-4 days after the anesthetic procedure. Figure A4).

ure 3 )
. Those who had previous experience with pediatric anesthesiology rated the satisfaction with a median of 83 [71-97].
know I prefer not to answer this question F I G U R E 5 The responsibilities of an anesthesiologist according to parents.Multiple answers could be selected.In this two-phase observational cross-sectional study among parents of children receiving anesthesia, parents were involved in the development of questionnaires containing items designed to assess potential concerns and experiences regarding anesthesia, and these questionnaires were distributed among a larger group of parents.

12 . 2 1.
How did you experience your child receiving anesthesia* the previous Ɵme?Please indicate on the line below the point that most closely matches your experience: # □ I prefer not to answer this quesƟon.Please give an explanaƟon of this experience: # □ I prefer not to answer this quesƟon.13.Do you have other children who have received anesthesia* before?# □ No (go to quesƟon 17) □ Yes □ I prefer not to answer this quesƟon.14.How did you experience your child/children receiving anesthesia* the previous Ɵme?Please indicate on the line below the point that most closely matches your experience (you can draw more lines if there are more children or medical procedures): # □ I prefer not to answer this quesƟon.Please give an explanaƟon of this experience(s): # □ I prefer not to answer this quesƟon.15.What topics would you like to discuss during the preanesthesia assessment with the pediatric anesthesiologist?Please indicate on the line below the point that most closely matches your experience:□ I prefer not to answer this quesƟon.g.ResponsibiliƟes of an anesthesiologist during the medical procedure.#Questions that return in other questionnaires if they were not answered before # Questions that return in other questionnaires if they were not answered before # Questions that return in other questionnaires if they were not answered before b.Anesthesia* procedure.c.Tips for parents to influence their child's behaviour and state.d.Different opƟons for pain treatment.e. Possible side effects of anesthesia*.f.Possible short-term effects of anesthesia* aŌer the medical procedure.g.Possible long-term effects of anesthesia* aŌer the medical procedure.Other, namely… 16.The following quesƟons must be completed from your perspecƟve, as a parent.Please respond to each quesƟon or statement by marking one box per row.In the past 7 days… PROMIS v1.0 Anxiety Short Form 8a XPAS questionnaire How did you experience the preanesthesia assessment with the pediatric anesthesiologist?Please indicate on the line below the point that most closely matches your experience: □ I prefer not to answer this quesƟon.

3 . 3 1.
Do you have an idea on how you will encounter your child at the recovery room aŌer the medical procedure?Please indicate on the line below the point that most closely matches your experience: □ I prefer not to answer this quesƟon.Please give an explanaƟon of this expectaƟon: □ I prefer not to answer this quesƟon.4.Which of the following descripƟons do you think best describes an anesthesiologist?not to answer this quesƟon.5. What are the responsibiliƟes of an anesthesiologist during the medical procedure?You can select more than one opƟon.□ Venipuncture □ Epidural puncture □ Keeping hemodynamic stability □ Administering medicaƟons □ IntubaƟon □ Monitoring the paƟent's respiraƟon and venƟlaƟon (breathing) □ Administering blood when necessary □ Pain alleviaƟon □ I do not know □ I prefer not to answer this quesƟon.6. Would you like to receive more informaƟon about the responsibiliƟes of an anesthesiologist?Please indicate on the line below the point that most closely matches your experience: □ I prefer not to answer this quesƟon.7. How would you like to receive this informaƟon?You can select more than one opƟon.□ Through the anesthesiologist at the preanesthesia assessment □ Through another physician/specialist □ Through informaƟonal brochures of the hospital □ Through the hospital's website □ Through public internet, books and/or magazines □ Through an informaƟon evening organised by the department of Pediatric Anesthesiology □ Other, namely… □ I prefer not to answer this quesƟon.8. Do you have concerns about your child receiving anesthesia (narcosis, mild sedaƟon, epidural or spinal puncture)?Please indicate on the line below the point that most closely matches your experience: □ I prefer not to answer this quesƟon.What kind of concerns do you have?(If you are not concerned at all, go to quesƟon 13) □ I prefer not to answer this quesƟon.9. How can we help to reduce your concerns?You can select more than one opƟon.□ My concerns will not go away □ If I can speak by telephone to the anesthesiologist assigned to my child shortly before the medical procedure (a day to a week) □ If I can speak to the anesthesiologist assigned to my child just before the medical procedure □ If I receive more informaƟon about the anestheƟcs (about the effects and side effects) □ If I receive more informaƟon about the anestheƟc procedure □ If I can get in contact with other parents who have experiences with pediatric anesthesia □ If I can join an informaƟon meeƟng with other parents to ask my quesƟons and share my concerns □ If I can speak to the anesthesiologist aŌer the medical procedure, to ask how the anestheƟc procedure went □ Other, namely… □ I prefer not to answer this quesƟon.10.Do you think anesthesia (narcosis, mild sedaƟon, epidural or spinal puncture) could have shortterm consequences (within 1 week)?□ No □ Yes, such as… □ I prefer not to answer this quesƟon.11.Do you think anesthesia (narcosis, mild sedaƟon, epidural or spinal puncture) could have longterm consequences?□ No □ Yes, such as… □ I prefer not to answer this quesƟon.12. Do you think anesthesia (narcosis, mild sedaƟon, epidural or spinal puncture) could harm your child's development on the long-term?□ No □ Yes □ I prefer not to answer this quesƟon.13.Would you like to receive more informaƟon about the effects and side effects of anesthesia?Please indicate on the line below the point that most closely matches your experience: □ I prefer not to answer this quesƟon.14.How would you like to receive this informaƟon?You can select more than one opƟon.□ Through the anesthesiologist at the preanesthesia assessment □ Through another physician/specialist □ Through informaƟonal brochures of the hospital □ Through the hospital's website □ Through public internet, books and/or magazines □ Through an informaƟon evening organised by the department of Pediatric Anesthesiology □ Other, namely… □ I prefer not to answer this quesƟon.15.The following quesƟons must be completed from your perspecƟve, as a parent.Please respond to each quesƟon or statement by marking one box per row.In the past 7 days… PROMIS v1.0 Anxiety Short Form 8a XPAS questionnaire How did you experience your child receiving anesthesia (narcosis, mild sedaƟon, epidural or spinal puncture)?Please indicate on the line below the point that most closely matches your experience: □ I prefer not to answer this quesƟon.

2 .
How did your child experiences receives anesthesia (narcosis, mild sedaƟon, epidural or spinal puncture)?Please indicate on the line below the point that most closely matches your experience: □ I prefer not to answer this quesƟon.

4 .
Did you prepare your child for receiving anesthesia (narcosis, mild sedaƟon, epidural or spinal puncture) before the medical procedure?You can select more than one opƟon.□ No, I did not prepare my child □ Yes, I explained the whole procedure to my child □ Yes, the anesthesiologist/another physician or specialist explained my child □ Yes, family, friends and/or acquaintances explained my child □ Yes, my child prepared him/herself □ Yes, in another way, namely… □ I prefer not to answer this quesƟon.

6 . 3
Did you speak to the anesthesiologist aŌer the medical procedure?□ Yes □ No 7. Did you receive enough informaƟon about the anesthesia?Please indicate on the line below the point that most closely matches your experience: □ I prefer not to answer this quesƟon.8.Your child just underwent the medical procedure.Did you experience anything during this period which you would have liked to have received more informaƟon about?A PPE N D I X Outline of the insertion of questions and type of questions of the final XPAS questionnaires

F I G U R E A 2
Flowchart XPAS questionnaire 2: 2 days after visiting the preanesthesia assessment outpatient clinic.not show up (n=62) Parents who were included before (n=146) Email adress missing in patient registration system (n=206) Parents declined to participate (n=57) Questionnaires not returned (n=1038) Questionnaires used for analysis (n=603) Questionnaire completed by/in name of the child (n=7) Response rate: 36% F I G U R E A 3 Flowchart XPAS questionnaire 3: 4 days after the medical procedure.

XPAS questionnaire Children of parents involved in the development of the questionnaires Children of parents who completed the questionaires
Note: Missings are represented as numbers (n).
Parental concerns regarding the influence of anesthesia.
TA B L E 2

I X 2 XPAS questionnaires, English version
HeeŌ u voldoende informaƟe ontvangen over het verloop van de anesthesie?Plaats een streepje op de balk in de richƟng waar uw ervaring het meest mee overeenkomt: □ Ik geef hier liever geen antwoord op.Please state whether you complete this quesƟonnaire by yourself or together with your partner.If together with your partner, you can select more answer opƟons/draw more lines for each quesƟon.Questions that return in other questionnaires if they were not answered before # Questions that return in other questionnaires if they were not answered before □ I prefer not to answer this quesƟon.7.What medical procedure will your child undergo?# Questions that return in other questionnaires if they were not answered before A PPE N D# Questions that return in other questionnaires if they were not answered before XPAS questionnaire 1 # # 5. Did your child prepare him/herself for receiving anesthesia (narcosis, mild sedaƟon, epidural or spinal puncture) before the medical procedure?You can select more than one opƟon.□ No, my child did not prepare him/herself □ Yes, through the anesthesiologist at the preanesthesia assessment □ Yes, through another physician/specialist □ Yes, through informaƟonal brochures of the hospital □ Yes, through the hospital's website □ Yes, through public internet, books and/or magazines □ Yes, through family, friends and/or acquaintances □ Yes, in another way, namely… □ I prefer not to answer this quesƟon.