Sie sind auf Seite 1von 8

Received: 17 October 2018

Revised: 10 December 2018

Accepted: 13 December 2018

DOI: 10.1002/pbc.27600

RESEARCH ARTICLE

13 December 2018 DOI: 10.1002/pbc.27600 RESEARCH ARTICLE Pediatric Blood & Cancer The American Society of

Pediatric

Blood &

Cancer

RESEARCH ARTICLE Pediatric Blood & Cancer The American Society of Pediatric Hematology/Oncology
RESEARCH ARTICLE Pediatric Blood & Cancer The American Society of Pediatric Hematology/Oncology

The American Society of Pediatric Hematology/Oncology

General anesthesia, conscious sedation, or nothing:

Decision-making by children during painful procedures

Karolina Maslak 1 Marinella Astuto 3 Gregoria Bertuna 1 Luca Lo Nigro 1 Mariaclaudia Meli 1,4 Giovanna Russo 1,4

1 Mariaclaudia Meli 1 , 4 Giovanna Russo 1 , 4 Cinzia Favara-Scacco 1 Martina Barchitta
1 Mariaclaudia Meli 1 , 4 Giovanna Russo 1 , 4 Cinzia Favara-Scacco 1 Martina Barchitta

Cinzia Favara-Scacco 1

Martina Barchitta 2

Antonella Agodi 2

Rita Scalisi 3

Simona Italia 1

Francesco Bellia 1

Salvatore D'Amico 1

Piera Samperi 1

Milena La Spina 1

Maria Licciardello 1

Vito Miraglia 1

1 Milena La Spina 1 Maria Licciardello 1 Vito Miraglia 1 Emanuela Cannata 1 Federica Puglisi

Emanuela Cannata 1

1 Maria Licciardello 1 Vito Miraglia 1 Emanuela Cannata 1 Federica Puglisi 1 , 4 Andrea

Federica Puglisi 1,4 Andrea Di Cataldo 1,4

Giuseppe Fabio Parisi 1,4

1 Pediatric Hemato-Oncology Unit, Azienda Policlinico Vittorio Emanuele, Catania, Italy

2 Department “GF Ingrassia” University of Cata- nia, Catania, Italy

3 Intensive Care Unit, Azienda Policlinico Vittorio Emanuele, Catania, Italy

4 Clinical and Experimental Medicine, University of Catania, Catania, Italy

Correspondence Giovanna Russo, Pediatric Hemato-Oncology Unit, Azienda Policlinico Vittorio Emanuele, Via Santa Sofia 78, 95123 Catania, Italy. Email: diberuss@unict.it

Previously published as meeting abstract

1. 45th Congress of the International Society of

Paediatric Oncology, 25–28 September 2013, Hong Kong, China;

2. XXXVII Congresso Nazionale AIEOP, 20–22

May 2012 Bari, Italy;

3. Submitted to 50th Congress of the Interna-

tional Society of Paediatric Oncology, 16–19

November 2018, Kyoto, Japan

Abstract

Background: Following diagnosis, children with cancer suddenly find themselves in an unknown world where unfamiliar adults make all the important decisions. Children typically experience increasing levels of anxiety with repeated invasive procedures and do not adapt to the discom- fort. The aim of the present study is to explore the possibility of asking children directly about their medical support preferences during invasive procedures.

Procedure: Each patient was offered a choice of medical support on the day of the procedure, specifically general anesthesia (GA), conscious sedation (CS), or nothing. An ad hoc assessment tool was prepared in order to measure child discomfort before, during, and after each procedure, and caregiver adequacy was measured. Both instruments were completed at each procedure by the attending psychologist.

Results: We monitored 247 consecutive invasive procedures in 85 children and found that chil- dren in the 4 to 7 year age group showed significantly higher distress levels. GA was chosen 66

times (26.7%), CS was chosen 97 times (39.3%), and nothing was chosen 5 times and exclusively by adolescents. The child did not choose in 79 procedures (32%). The selection of medical support

differed between age groups and distress level was reduced at succeeding procedures.

Conclusions: Offering children the choice of medical support during invasive procedures allows for tailored support based on individual needs and is an effective modality to return active control to young patients, limiting the emotional trauma of cancer and treatment.

KEYWORDS

anesthesia, children, pain management, pain, painful procedures, pediatric oncology, psychological support, sedation

1

INTRODUCTION

A cancer diagnosis can represent a major disruption of everyday life. Children with cancer suddenly find themselves in a novel rigorous envi- ronment, in which unfamiliar adults make all the decisions, even the

Abbreviations: BMA, bone marrow aspiration; CS, conscious sedation; GA, general anesthesia; LP, lumbar puncture; No., number; p, Pearson correlation coefficients; SD, standard deviation

most negligible ones. Uncertainty becomes a rule for these patients, the need for a safe space becomes predominant, 14 and psychologi- cal assistance aims to create a holding environment containing doubts, anguish, and fears. 510 Managing these disturbing emotions is par- ticularly important during the invasive procedures associated with diagnosis and treatment. 1119 Researchers report that bone marrow aspiration (BMA) and lumbar puncture (LP) are perceived as extremely traumatic by children with

Pediatr Blood Cancer. 2019;e27600.

wileyonlinelibrary.com/journal/pbc

c 2019 Wiley Periodicals, Inc.

1 of 8

https://doi.org/10.1002/pbc.27600

2 of 8 MASLAK ET AL .
2 of 8
MASLAK ET AL .

cancer. 1,3,4,14,20 Although procedure-related pain represents an acute, short-lived experience, it is accompanied by a great deal of fear and anxiety and is remembered as traumatic even years after the treat- ment has completed. 4,20,21 Children undergoing cancer treatment experience an increasing level of anxiety related to repeated inva- sive procedures and do not adapt to the associated discomfort. 2226 They often develop symptoms such as lack of appetite, insomnia, and emotional destabilization preceding a hospital visit including these procedures. 27,28 There is a current consensus among professionals caring for children with cancer that these patients must receive age- appropriate preparatory information along with adequate psychologi- cal support around invasive medical procedures. 29 These procedures have been performed in the operating room with the support of general anesthesia (GA) for the last 10 years at our cen- ter. GA allows for total control over pain and consciousness and has been considered the preferred solution for painful experiences. How- ever, we noticed that some patients showed discomfort during GA and others refused it, presenting extremely high distress levels before and during the anesthesia induction, and immediately after awakening. 30,31 The patients reported disturbing images related to finding them- selves in fearful places and situations and extra-bodily sensations. We understood that the fear of the procedure was not neutralized by GA for some patients and that GA itself was a source of additional anxiety and discomfort, potentially due to its symbolic association with death. 3034 The existing literature examines pharmacological versus nonphar- macological support 3540 and sedation versus no sedation, 30,4150 and describes different ways to prepare children for these procedures. 11,51,52 However, none of these studies included ask- ing children directly about their preferences for the type of medical support. Careful attention to the emotional outcomes of invasive procedures is often limited, and only 36% of Centers of Pediatric Oncology and Hematology in Italy reported that they ask children to give an assess- ment of the pain experienced following the procedure, and only 22% ask during the procedure. 53 The eventual evaluation of pain control efficacy is assigned to either the operators themselves or the caregivers, 54,55 although the child's perception of the invasiveness of the procedure and the related painful experience has been confirmed to be poorly understood. 5661 Therefore, we considered that involving children in decision-making about medical support during the procedure could mitigate some of their emotional distress. 62,63 The primary endpoint of the present study is to evaluate whether allowing the children to choose among dif- ferent types of medical support is able to lower their distress.

2 METHODS

All children undergoing invasive procedures in our Pediatric Hema- tology and Oncology Unit from November 2013 to September 2014 were eligible to participate in this study. All caregivers and children 15 years of age or older provided written informed consent in accor- dance with the local Ethical Committee requirements. Patients were

divided into four age groups: preverbal (0–3 years), elementary school (4–7 years), preadolescents (8–11 years), and adolescents ( 12 years). The included procedures were LP, BMA, bone marrow biopsy, and venous access positioning, since the first investigative procedure prior to diagnosis as well as in the course of treatment. All procedures were performed in an operating room equipped for anesthesia and the team included a psychologist-art therapist, a pediatric oncologist, an anesthetist, and a nurse. The caregiver could be present in the room before the procedure, during anesthesia induction, if requested by the child, and later in the recovery room, but not during the procedure itself. We gave children two types of support designated as medical and psychological support on the day of the procedure. The medical sup- port is given by the anesthetist during the procedure according to child's choice of GA, conscious sedation (CS), or nothing. Psychologi- cal support is given by the psychologist before, during, and after the procedure.

2.1

Medical support

GA is a drug-induced loss of consciousness from which the patient is not easily aroused and is unable to respond purposefully to physical stimulation or verbal command. The drugs used were propofol and/or sevoflurane and fentanyl, according to the anesthetist 's determina- tion. CS is a medically controlled state of depressed consciousness, which allows protective reflexes to be maintained and permits volun- tary responses by the patient to physical stimulation or verbal com- mands. The drugs used were nitrous oxide and fentanyl as determined by the anesthetist. Nothing was defined as a state of full consciousness, with no use of drugs. Local anesthetic cream was applied to the zone of puncture one hour before the procedure.

2.2

Psychological support before the procedure

The psychologist assisted each patient before the procedure by cre- ating a listening time during which a comforting and age-appropriate explanation of the procedure was given to address fearful doubts and to contain frightening imagination. The methodology used during the listening time was based on verbal communication as well as various age-appropriate creative techniques including medical play, drama- tization, free drawing, coloring, storytelling, and listening to music. The patient was also asked to recall their “safe place” to stimulate and increase a sense of comfort. The length of the listening time var- ied from 10 to 30 minutes depending on the patient's age, physi- cal/emotional condition, personality, and on their individual recall of previous procedures. The patient was then given the opportunity to choose the type of medical support he or she would receive that day. The patient was asked to confirm this choice even when the team knew the patient's previous preference for medical support, and no selection was described as good or bad. If the patient was unable to express his or her preference, the medical support was chosen together by the psy- chologist, the doctors, and the caregiver. The patient was also asked to choose whether to be accompanied by the caregiver.

MASLAK ET AL .

MASLAK ET AL . 3 of 8
MASLAK ET AL . 3 of 8

3 of 8

MASLAK ET AL . 3 of 8 2.3 Psychological support during the procedure The accompanying psychologist

2.3

Psychological support during the procedure

The accompanying psychologist communicated the patient 's choice of medical support to the team at the entrance to the operating room. Psychological support continued by “focusing visual imagina- tion” or “freeing visual imagination,” depending on the patient 's emo- tional state. 64 “Focusing visual imagination,” such as with a count- down and regular vocal outcomes, was offered to children with high need for control and predictability. The patient 's active participation was necessary in this case. “Freeing visual imagination” was offered to patients expressing less need for control, and included the following modalities:

a. reality-based, in which the patient's active participation alternated with passive listening, such as recalling pleasant life events;

b. fantasy-based, including passive listening and guided imagery, which engaged the patient by placing focus on a pleasant activity, providing distraction from pain, or changing the perception of the painful experience. The images used were produced during the lis- tening time.

2.4

Psychological support after the procedure

Once the patient was awake, the psychologist provided the opportu- nity to elaborate on the experience to help patients regain a sense of control and self-assurance while recalling the “safe place.”

2.5

Distress checklist

We created an ad hoc assessment tool to measure patient distress (Supporting Information Table 1S). It consisted of 18 items, drawn from the literature on pediatric pain/procedures and from our clini- cal experience 19,6571 and included items referring to both verbal and physical behaviors. Verbal behaviors included position refusal (e.g., “I won't stay still”), search for emotional support (e.g., “Mammy stay near me,” “would you hold my hand?”), and request for termination (e.g., “stop now, please,” “I don't want to do it today”). Items were scored as 1 if present and 0 if not; therefore, the higher the score, the higher the distress level. We measured patient 's distress before, during, and after each procedure and calculated the average score.

2.6

Caregiver behavior

TABLE 1 Characteristics of the 85 patients (247 procedures)

 

Patients

Procedures

Characteristic

No. (%)

No. (%)

Age groups

0–3 (preverbal)

21 (24.7)

60 (24.3)

4–7 (elementary school)

20 (23.5)

68 (27.5)

8–11 (preadolescents)

21 (24.7)

64 (25.9)

12 (adolescents)

23 (27.1)

55 (22.3)

Sex

Female

43 (50.6) 124 (50.2)

Male

42 (49.4) 123 (49.8)

Disease

Acute Lymphoblastic Leukemia

45 (52.9) 159 (64.4)

Myeloid Lymphoblastic Leukemia

7 (8.2)

36 (14.6)

Other Leukemias

4 (4.7)

9 (3.6)

Non-Hodgkin Lymphoma

4 (4.7)

15 (6.1)

Other solid tumors

4 (4.7)

4 (1.6)

Hematological benign disease

3 (3.5)

6 (2.4)

Disease suspected, diagnostic phase

18 (21.2)

18 (7.3)

Type of procedure

Bone marrow aspirate

39 (45.9) 101 (40.9)

Lumbar puncture

26 (30.6) 101 (40.9)

Bone marrow aspirate + lumbar puncture

8 (9.4)

28 (11.3)

Bone marrow biopsy

1 (1.2)

1 (0.4)

Venous access

2 (2.4)

3 (1.2)

Other (combination of above)

9 (10.5)

13 (5.2)

Total

85 (100)

247 (100)

2.7

Statistical analyses

The data were collected in a database, and statistical analyses were performed using SPSS software (IBM Corp. Released 2013. IBM SPSS Statistics for Windows, Version 22.0. Armonk, NY: IBM Corp). Descrip- tive statistics were used to characterize the population using frequen- cies, means, and median values and ranges. Two-tailed 2 tests were used for the statistical comparison of proportions, while continuous variables were evaluated with Student t tests. Correlations between continuous variables were also evaluated using Pearson correlation coefficients.

This custom-made tool consisted of four items assessing physical close- ness, emotional closeness, respect for child's needs, and willingness to tell the truth about the procedure. For each item, a score of 0 indicated inadequate behavior and 1 indicated a satisfactory attitude, and each item was assessed before, during, and after the procedure, leading to a final score ranging from 0 to 12. For example, if a caregiver remained near the child and maintained physical contact while saying: “Don't cry, it's not a big deal,” the behavior would be scored 1 for “physical close- ness” and 0 for “emotional closeness.” If the caregiver insisted on being present in the procedure room even if the child wanted to be alone, the item “respect for child 's needs” was scored 0.

3 RESULTS

We performed 247 consecutive painful procedures in 85 children (Table 1), and patients were homogeneously distributed among the age and sex groups. The sample ranged in age from 0 to 20 years with a mean age of 7.6 years. The mean number of procedures observed per participant was 2.9, ranging from 1 to 10. The most frequent proce- dures were BMA (n = 101) and LP ( n = 101), and the most frequent diagnosis was acute lymphoblastic leukemia.

4 of 8 MASLAK ET AL .
4 of 8
MASLAK ET AL .

TABLE 2 Distress analysis according to age group

Age group (years)

Average distress score

A. 0–3

4.62

B. 4–7

6.24

C. 8–11

3.88

D. 12

3.98

A

vs B P < 0.005.

B

vs C P < 0.001.

B

vs D P < 0.01.

Comparisons between other age groups are not statistically significant (P 0.05).

3.1

Child distress evaluation

We used the mean value obtained from the scores measured before,

during, and after each procedure. We found significantly higher dis-

tress levels in patients aged 4 to 7 years (Table 2).

Females showed significantly higher scores following the procedure

relative to males (0.8 ± 1.1 vs 0.5 ± 1.1, P < 0.05, Cohen d = 0.27),

whereas no significant differences were observed at the entrance to

the procedure room or during the procedure/anesthesia induction.

We compared the distress level, at first procedure, of 21 patients

with no previous experience, with 64 patients, with previous

experience out of this study, and found no significant difference

(mean total sum of distress score 17.57 vs 18.34, respectively).

Finally, we compared the distress across all procedures for single

patients, comparing level at first procedure versus more than first,

first and second versus more than second, etc., and we found that dis-

tress levels diminished across subsequent procedures (Table 3), and

the more procedures the child experienced, the lower the distress level

became.

3.2

Medical support chosen by the child

Figure 1 and Table 4 show that GA was chosen 66 times (26.7%),

mainly by adolescents (32 procedures) and preadolescents (24 proce-

dures). CS was chosen 97 times (39.3%) and was preferred by pread-

olescents (37 procedures) and the elementary school-age group (31

procedures). Nothing was chosen five times and exclusively by adoles-

cents. No choice was made 79 times (32% of the procedures), and chil-

dren who did not make a choice were mainly preverbal (46 procedures)

followed by the elementary school-age group (29 procedures).

3.3

Medical support used

GA was used 167 times, in 66 procedures in which it had been chosen

by the child, in 67 procedures in which the child did not choose and it

was selected by the team, and in 34 procedures in which it was per-

formed after shifting the patient from CS support. The shift was made

during anesthesia induction itself because the child was not able to col-

laborate sufficiently or was uncomfortable.

CS was used in 75 of the 97 procedures in which it was chosen,

because 34 patients were shifted to GA during the anesthesia induc-

TABLE 3 Distress analysis at each procedure, according to the number of previous procedures

Overall number

Number of procedures (total = 247)

 

of procedures

Average

per child

distress score

P

<

2

85

5.48

< 0.005

2

162

4.33

 

< 3

137

5.34

< 0.001

3

110

3.96

<

4

175

5.22

< 0.001

4

72

3.54

< 5

200

5.05

< 0.001

 

5

47

3.38

<

6

220

4.92

< 0.005

6

27

3.15

 

< 7

233

4.83

< 0.05

7

14

3.07

7 233 4.83 < 0.05 ≥ 7 14 3.07 FIGURE 1 The child ' s choice

FIGURE 1 The child's choice for medical support vs the medical support used in 247 procedures GA, general anesthesia; CS, conscious sedation; nothing, no use of drugs

tion. In 12 cases, it was selected by the team in cases of no choice by

the patient.

Five patients used “nothing,” and the “no choice” group was

assigned by the team to either GA or CS according to the observed

initial distress level and information obtained during the listening time

(Table 4 and Figure 1).

3.4

Caregiver behavior

The comparison of caregiver behavior showed a more adequate atti-

tude in younger age groups, with a statistically significant differ-

ence between the 0 and 3 year group compared with the 8 to 11

and 12 year groups (P < 0.03 and P < 0.001, respectively; Table 5).

There was no significant correlation between patient distress level

and caregiver behavior.

MASLAK ET AL .

MASLAK ET AL . 5 of 8
MASLAK ET AL . 5 of 8

5 of 8

MASLAK ET AL . 5 of 8 TABLE 4 The child ' s choice of medical

TABLE 4 The child's choice of medical support

 

Medical support chosen

GA

CS

Nothing

No choice

Total in age group

Age group (year)

No. (%)

No. (%)

No. (%)

No. (%)

No. (%)

0–3

2 (3.3)

12 (20.0)

0

46 (76.7)

60 (24.3)

4–7

8 (11.8)

31 (45.6)

0

29 (42.6)

68 (27.5)

8–11

24 (37.5)

37 (57.8)

0

3 (4.7)

64 (25.9)

12

32 (58.2)

17 (30.9)

5 (9.1)

1 (1.8)

55 (22.3)

Total in procedures

66 (26.7)

97 (39.3)

5 (2.0)

79 (32.0)

247 (100.0)

TABLE 5 Caregiver behavior analysis

Age group (year)

Number

Average caregiver behavior score (mean ± SD)

A. 0–3

60

2.5 ± 1.0

B. 4–7

68

2.2 ± 1.3

C. 8–11

64

2.1 ± 1.0

D. 12

55

1.6 ± 1.2

A vs C P < 0.03.

A vs D P < 0.001.

Differences between other age groups are not statistically significant.

4 DISCUSSION

Most children survive their malignancies with modern medical care. Long-term survivors have confirmed that painful procedures at diag- nosis and during treatment lead to extremely traumatic memories even years after the completion of treatment. 21,72 We noticed that GA was

not sufficiently reassuring for all patients despite its total control over pain and consciousness, and that some patients refuse it. Therefore, we decided to let the children participate directly in the pain management process to allow them to experience a sense of control and actively explore their preferences when facing such an experience. Our results show that patients in the elementary age (4–7 years) group presented significantly higher distress levels than the other groups (Table 2). One possible explanation is that younger children (0–

3 years) may be reassured by simpler measures such as physical con-

tact by the caregiver, while older children (8–11 and 12) may find verbal explanation a helpful coping strategy. 7377 Children aged 4 to

7 may be vulnerable in that they are not fully dependent on caregivers

yet also not fully autonomous. 77 Despite the fact that the difference between distress levels after the procedure by gender was statistically significant (Student t tests P < 0.05), the effect size (Cohen d = 0.27) was small. As a result, we do not suggest that there was practically/clinically important differ- ence between male and female distress scores, although other authors reported that cultural norms encourage females to express their emo- tions more freely than males. 78,79

This study shows that distress levels decrease with the number of previously experienced procedures (Table 3). We speculate that the support modality used in this study was an efficacious remedy for

procedural distress. We created a holding environment in which the child had the opportunity to feel empowered. Children shaped their own pathways toward self-confidence in facing new experiences in this context and were not forced to fit inside a predetermined protocol. The analysis of the children 's selections confirms our background observation that providing GA exclusively may be insufficient. Only 66 of 168 participants chose GA, whereas the majority of children who expressed a preference chose CS, 97 of 168. One possible explana- tion is that CS is a modality of support which removes pain without the loss of consciousness and therefore control. Death anguish may be part of the anesthesia experience and is avoided or at least contained by this modality. 80 Each age group appeared to have different prefer- ences. The youngest were often unable to choose, elementary school and preadolescents preferred CS over GA, and adolescents preferred GA (Table 4). Although the reasons why most children in the 0 to3 year age group were unable to express a preference may seem obvious, it is interesting to note the “no choice” selection in the elementary school- age group. This is unlikely to reflect an age-related impediment, but rather a difficulty in containing the decision-related emotional burden. “No choice” is therefore a choice itself, expressing the need to have an adult offer a reassuring emotional containment. 74,77,81 This is consis- tent with the observation of the highest distress level in this age group (Table 3). In contrast, preadolescents and adolescents were more capable of expressing their needs at the emotional level. Very few did not choose (3/64 and 1/55, in the 8–11 and 12 age groups, respectively), and the preference for GA in adolescents (32/55) indicates an increased awareness of the disease and its related emotional burden, in that patients in this age group needed to lose control completely. 64,77 It is noteworthy that patients chose “nothing” in five procedures. They completed the procedure as initially chosen in all cases, without any pharmacological intervention. This was a minority of cases and all in the adolescent age group but is nonetheless particularly significant. The reasons for such a selection may stem from the desire to com- pletely control both the pain and the procedure, because adolescents are more aware of their disease severity and have more exposure to death anguish. It was a challenge for the care team to accept such a choice. It required a team effort to have the capability to take the pain away without using it, and this effort was guided by respect for the patient's emotional needs. 82 The management of complex issues related to the curative process, organizational routine, and patient and caregiver

6 of 8 MASLAK ET AL .
6 of 8
MASLAK ET AL .

needs requires a concerted team including a variety of roles, who can take care of specific aspects of the process and offer support to each other. 8387 Although our clinical experience suggests that caregiver behavior can influence the child's experience of the procedure, our study design failed to show a statistically significant correlation between caregiver behavior and child distress. It is possible that the observational scale that we used was not able to uncover a possible correlation, but we can also speculate that the painful procedure was a traumatic event signif- icant enough to create a unique emotional condition that temporarily disrupted the typical supportive exchange between the caregiver and the child. Other limitations of the study are the use of a nonvalidated scale for distress measurement and caregiver behavior, and the lack of col- lection of parent preferences for medical support. In conclusion, we found that it is possible to tailor medical and psychological support to each individual patient during painful procedures, 8,9,15 which can be predominant during cancer treatment. Patients could not avoid the procedure, but they could regain control by choosing the type of medical support and lower the distress. We followed the child, not the protocol.

CONFLICTS OF INTEREST

The authors have no potential conflicts of interest. The authors have no financial relationships relevant to this article to disclose.

ORCID

Karolina Maslak Luca Lo Nigro Giovanna Russo Andrea Di Cataldo

Maslak Luca Lo Nigro Giovanna Russo Andrea Di Cataldo https://orcid.org/0000-0001-9112-7661

REFERENCES

1. Darcy L, Knutsson S, Huus K, et al. The everyday life of the young child shortly after receiving a cancer diagnosis, from both children's and par- ent 's perspectives. Cancer Nurs. 2014;37:445–456.

2. Coughtrey A, Millington A, Bennett S, et al. The effectiveness of psy-

chosocial interventions for psychological outcomes in pediatric oncol- ogy: a systematic review. J Pain Symptom Manage. 2018;55:1004–

1017.

3. Mitchell HR, Lu X, Myers RM, et al. Prospective, longitudinal assess- ment of quality of life in children from diagnosis to 3 months off treatment for standard risk acute lymphoblastic leukemia: results of Children 's Oncology Group study AALL0331. Int J Cancer.

2016;138:332–339.

4. Kazak AE, Alderfer M, Rourke MT. Posttraumatic stress disorder (PTSD) and posttraumatic stress symptoms (PTSS) in families of ado- lescent childhood cancer survivors. J Pediatr Psychol. 2004:211–219.

5. Kazak AE, Abrams AN, Banks J, et al. Psychosocial assessment as a standard of care in pediatric cancer. Pediatr Blood Cancer.

2015;62:S426–59.

6. Kazak AE, Noll RB. The integration of psychology in pediatric oncology research and practice: collaboration to improve care and outcomes for children and families. Am Psychol. 2015;70:146–158.

7. Kazak AE, Rourke MT, Alderfer MA, et al. Evidence-based assess- ment, intervention and psychosocial care in pediatric oncology: a

blueprint for comprehensive services across treatment. J Pediatr Psy- chol. 2007;32:1099–1110.

8.

Thompson AL, Young-Saleme T. Anticipatory guidance and psychoedu- cation as a standard of care in pediatric oncology. Pediatr Blood Cancer.

2015;62:S684–93.

9.

Steele AC, Mullins LL, Mullins AJ, et al. Psychosocial interventions and therapeutic support as a standard of care in pediatric oncology. Pediatr Blood Cancer. 2015;62:S585–618.

10.

Scialla MA, Canter KS, Chen FF, et al. Implementing the psychosocial standards in pediatric cancer: current staffing and services available. Pediatr Blood Cancer. 2017;64:e26634.

11.

Schepper F, Schachtschabel S, Christiansen H. Do not worry, it hurts!’- psychological preparation for medical procedures in pediatric oncol- ogy. Klin Padiatr. 2012;224:201–206.

12.

Salas Arrambide M, Gabaldón Poc O, Mayoral Miravete JL, et al. Psy- chological intervention for coping with painful medical procedures in pediatric oncology. An Pediatr (Barc). 2003;59:105–109.

13.

Tumino M, Meli C, Farruggia P, et al. Clinical manifestations and man- agement of four children with Pearson syndrome. Am J Med Genet A.

2011;155:3063–3066.

14.

Walco GA, Conte PM, Labay LE, et al. Procedural distress in children with cancer: self-report, behavioral observations, and physiological parameters. Clin J Pain. 2005;21:484–490.

15.

Wiener L, Kazak AE, Noll RB, et al. Standards for the psychosocial care of children with cancer and their families: an introduction to the special issue. Pediatr Blood Cancer. 2015;62:419–424.

16.

Wiener L, Viola A, Koretski J, et al. Pediatric psycho-oncology care: standards, guidelines, and consensus reports. Psychooncology.

2015;24:204–211.

17.

Young KD. Pediatric procedural pain. Ann Emerg Med. 2005;45:160–

171.

18.

Astuto M, Favara-Scacco C, Crimi E, et al. Pain control during diag- nostic and/or therapeutic procedures in children. Minerva Anestesiol.

2002;68:695–703.

19.

Blount RL, Zempsky WT, Jaaniste T. Management of pain and dis- tress due to medical procedures. In: Roberts MC, Steele R, eds. Hand- book of Pediatric Psychology. New York, NY: Guilford Press; 2009:

171–188.

20.

Best M, Streisand R, Catania L, et al. Parental distress during pediatric leukemia and posttraumatic stress symptoms (PTSS) after treatment ends. J Pediatr Psychol. 2001;26:299–307.

21.

Stuber ML, Meeske KA, Leisenring W, et al. Defining medical posttrau- matic stress among young adult survivors in the Childhood Cancer Sur- vivor Study. Gen Hosp Psychiatry. 2011;33:347–353.

22.

Chen E, Zeltzer LK, Craske MG, et al. Children 's memories for painful cancer treatment procedures: implications for distress. Child Dev.

2000;71:933–947.

23.

Hedström M, Haglund K, Skolin I, et al. Distressing events for chil- dren and adolescents with cancer: child, parent, and nurse perceptions. J Pediatr Oncol Nurs. 2003;20:120–132.

24.

Twycross A, Parker R, Williams A, et al. Cancer-related pain and pain management: sources, prevalence, and the experiences of children and parents. J Pediatr Oncol Nurs. 2015;32:369–384.

25.

Zeltzer LK, Altman A, Cohen D, et al. American Academy of Pedi- atrics report of the subcommittee on the management of pain associ-

ated with procedures in children with cancer. Pediatrics. 1990;86:826–

831.

26.

Weisman SJ, Bernstein B, Schechter N. Consequences of inadequate analgesia during painful procedures in children. Arch Pediatr Adolesc Med . 1998;152:147–149.

MASLAK ET AL .

MASLAK ET AL . 7 of 8
MASLAK ET AL . 7 of 8

7 of 8

MASLAK ET AL . 7 of 8 27. Dupuis LL, Lu X, Mitchell HR, et al.

27. Dupuis LL, Lu X, Mitchell HR, et al. Anxiety, pain, and nausea during the treatment of standard-risk childhood acute lymphoblastic leukemia: a prospective, longitudinal study from the Children's Oncology Group. Cancer. 2014;120:1417–1425.

28. Racine NM, Riddell RR, Khan M, et al. Systematic review: predispos- ing, precipitating, perpetuating, and present factors predicting antici- patory distress to painful medical procedures in children. J Pediatr Psy- chol. 2016;41:159–181.

29. Flowers SR, Birnie KA. Procedural preparation and support as a stan- dard of care in pediatric oncology. Pediatr Blood Cancer. 2015;62:S668–

S697.

30. Barbi E, Badina L, Marchetti F, et al. Attitudes of children with leukemia toward repeated deep sedations with propofol. J Pediatr Hematol Oncol. 2005;27:639–643.

31. Wright KD, Stewart SH, Finley GA, et al. Prevention and interven- tion strategies to alleviate preoperative anxiety in children: a critical review. Behav Modif. 2007;31:52–79.

32. Borsook D, George E, Kussman B, et al. Anesthesia and perioperative stress: consequences on neural networks and postoperative behav- iors. Prog Neurobiol. 2010;92:601–612.

33. Chorney JM, Kain ZN. Behavioral analysis of children 's response to induction of anesthesia. Anesth Analg. 2009;109:1434–1440.

34. Wennström L, Bergh I. Bodily and verbal expressions of postoperative symptoms in 3- to 6-year-old boys. J Pediatr Nurs. 2008;23:65–76.

35. Kuppenheimer WG, Brown RT. Painful procedures in pediatric cancer. A comparison of interventions. Clin Psychol Rev. 2002;22:753–786.

36. Liossi C, White P, Hatira P. A randomized clinical trial of a brief hyp- nosis intervention to control venepuncture-related pain of paediatric cancer patients. Pain. 2009;142:255–263.

37. Po’ C, Benini F, Sainati L, et al. The management of procedural pain at the Italian Centers of Pediatric Hematology-Oncology: state-of-the- art and future directions. Support Care Cancer. 2012;20:2407–2414.

38. Wall VJ, Womack W. Hypnotic versus active cognitive strategies for alleviation of procedural distress in pediatric oncology patients. Am J Clin Hypn. 1989;31:181–191.

39. Wild MR, Espie CA. The efficacy of hypnosis in the reduction of proce- dural pain and distress in pediatric oncology: a systematic review. J Dev Behav Pediatr. 2004;25:207–213.

40. Manyande A, Cyna AM, Yip P, et al. Non-pharmacological interven- tions for assisting the induction of anaesthesia in children. Cochrane Database Syst Rev. 2015;7:CD006447.

41. Anghelescu DL, Burgoyne LL, Faughnan LG, et al. Prospective random- ized crossover evaluation of three anesthetic regimens for painful pro- cedures in children with cancer. J Pediatr. 2013;162:137–141.

42. Chiaretti A, Ruggiero A, Barbi E, et al. Comparison of propofol versus propofol-ketamine combination in pediatric oncologic procedures per- formed by non-anesthesiologists. Pediatr Blood Cancer. 2011;57:1163–

1167.

43. Gelen SA, Sarper N, Demirsoy U, et al. The efficacy and safety of proce- dural sedoanalgesia with midazolam and ketamine in pediatric hema- tology. Turk J Haematol. 2015;32:351–354.

44. Jayabose S, Levendoglu-Tugal O, Giamelli J, et al. Intravenous anesthe- sia with propofol for painful procedures in children with cancer. J Pedi- atr Hematol Oncol. 2001;23:290–293.

45. Kato Y, Maeda M, Aoki Y, et al. Pain management during bone mar- row aspiration and biopsy in pediatric cancer patients. Pediatr Int.

2014;56:354–359.

46. Nagel K, Willan AR, Lappan J, et al. Pediatric oncology sedation trial (POST): a double-blind randomized study. Pediatr Blood Cancer.

2008;51:634–638.

47. Po’ C, Agosto C, Farina MI, et al. Procedural pain in children: education and management. The approach of an Italian pediatric pain center. Eur

J Pediatr. 2012;171:1175–1183.

48. Po’ C, Benini F, Sainati L, et al. Procedural pain management in Italy:

learning from a nationwide survey involving centers of the Italian Association of Pediatric Hematology-Oncology. Pediatr Rep. 2011;3:

e34.

49. Von Heijne M, Bredlöv B, Söderhäll S, et al. Propofol or propofol– alfentanil anesthesia for painful procedures in the pediatric oncology ward. Paediatr Anaesth. 2004;14:670–675.

50. Friedrichsdorf SJ. Nitrous gas analgesia and sedation for lumbar punc-

tures in children: has the time for practice change come? Pediatric Blood

& Cancer. 2017;64.

51. Brown SC, Hart G, Chastain DP, et al. Reducing distress for children during invasive procedures: randomized clinical trial of effectiveness of the PediSedate. Paediatr Anaesth. 2009;19:725–731.

52. McCarthy M, Glick R, Green J, et al. Comfort first: an evaluation of a procedural pain management programme for children with cancer. Psy- chooncology. 2013;22:775–782.

53. Po’ C, Benini F, Sainati L, et al. The opinion of clinical staff regarding painfulness of procedures in pediatric hematology-oncology: an Italian survey. Ital J Pediatr. 2011;37:27.

54. Cechvala MM, Christenson D, Eickhoff JC, et al. Sedative preference of families for lumbar punctures in children with acute leukemia: propo- fol alone or propofol and fentanyl. J Pediatr Hematol Oncol. 2008;30:

142–147.

55. Crock C, Olsson C, Phillips R, et al. General anaesthesia or conscious sedation for painful procedures in childhood cancer: the family‘s per- spective. Arch Dis Child. 2003;88:253–257.

56. Baeyer von CL. Children's self-report of pain intensity: what we know, where we are headed. Pain Res Manage. 2009;14:39–45.

57. Ljungman G, Kreuger A, Gordh T, et al. Pain in pediatric oncology: do the experiences of children and parents differ from those of nurses and physicians. Ups J Med Sci. 2006;111:87–96.

58. Caes L, Vervoort T, Devos P, et al. Parental distress and catastrophic thoughts about child pain: implications for parental protective behav- ior in the context of child leukemia-related medical procedures. Clin J Pain. 2014;30:787–799.

59. Kazak AE, Boyer BA, Brophy P. Parental perceptions of procedure- related distress and family adaptation in childhood leukemia. Child Health Care. 1995;24:143–158.

60. Pöder U, Ljungman G, von Essen L. Parents’ perceptions of their chil- dren 's cancer-related symptoms during treatment: a prospective, lon- gitudinal study. J Pain Symptom Manage. 2010;40:661–670.

61. Wang Y, Liu Q, Yu JN, et al. Perceptions of parents and paediatri- cians on pain induced by bone marrow aspiration and lumbar puncture among children with acute leukaemia: a qualitative study in China. BMJ Open. 2017;7:e015727.

62. Tan L, Meakin GH. Anaesthesia for the uncooperative child. Contin Educ Anaesth Crit Care Pain. 2010;10:48–52.

63. Thompson ML. Information-seeking coping and anxiety in school- age children anticipating surgery. Child Health Care. 1994;23:

87–97.

64. Favara-Scacco C, Smirne G, Schilirò G, et al. Art therapy as support for children with leukemia during painful procedures. Med Pediatr Oncol.

2001;36:474–480.

65. Blount RL, Piira T, Cohen LL, et al. Pediatric procedural pain. Behav Modif. 2006;30:24–49.

66. McGrath P, Stevens BJ, Walker SM, et al. Oxford Textbook of Paedi- atric Pain. New York, NY: Oxford University Press; 2014.

8 of 8 MASLAK ET AL .
8 of 8
MASLAK ET AL .

67. Pillai RiddellR, Racine N. Assessing pain in infancy: the caregiver con- text. Pain Res Manag. 2009;14:27–32.

68. Tucker CL, Slifer KJ, Dahlquist LM. Reliability and validity of the brief behavioral distress scale: a measure of children 's distress during inva- sive medical procedures. J Pediatr Psychol. 2001;26:513–523.

69. Wong DL, Baker CM. Pain in children: comparison of assessment scales. Pediatr Nurs. 1988;14:9–17.

70. Blount RL, Cohen LL, Frank NC, et al. The Child-Adult Medical Proce- dure Interaction Scale-Revised: an assessment of validity. J Pediatr Psy- chol. 1997;22:73–88.

71. Katz J, Melzack R. Measurement of pain. Surg Clin North Am.

1999;79:231–252.

72. Lown EA, Phillips F, Schwartz LA, et al. Psychosocial follow-up in sur- vivorship as a standard of care in pediatric oncology. Pediatr Blood Can- cer. 2015;62:S514–S584.

73. McGrath P, Huff N. What is it?’: findings on preschoolers’ responses to play with medical equipment. Child Care Health Dev. 2001;27:451–462.

74. Salmela M, Aronen ET, Salanterä S. The experience of hospital-related

fears of 4- to 6-year-old children. Child Care Health Dev. 2011;37:719–

726.

75. Salmela M, Salanterä S, Aronen ET. Coping with hospital-related fears:

experiences of pre-school-aged children. J Adv Nurs. 2010;66:1222–

1231.

76. Koukourikos K, Tzeha L, Pantelidou P, et al. The importance of play dur- ing hospitalisation of children. Mater Sociomed. 2015;27:438–441.

77. Winnicott DW. Through Paediatrics to Psycho-analysis. London, UK:

Tavistock Publications; 1958.

78. Hechler T, Chalkiadis GA, Hasan C, et al. Sex differences in pain inten- sity in adolescents suffering from cancer: differences in pain memo- ries? J Pain. 2009;10:586–593.

79. Boerner KE, Chambers CT, McGrath PJ, et al. The effect of parental modeling on child pain responses: the role of parent and child sex. J Pain. 2017;18:702–715.

80. Ljungman G, Gordh T, Sorensen S, et al. Pain in paediatric oncology:

interviews with children, adolescents and their parents. Acta Paediatr.

1999;88:623–630.

81. Björk M, Nordström B, Hallström I. Needs of young children with can- cer during their initial hospitalization: an observational study. J Pediatr Oncol Nurs. 2006;23:210–219.

82. Finley GA, Franck LS, Grunau RE, et al. Why children 's pain matters. Pain: Clinical Updates. 2005;13:1–6.

83. Franck LS, Bruce E. Putting pain assessment into practice: why is it so painful? Pain Res Manag. 2009;14:13–20.

84. Giordano J, Abramson K, Boswell MV. Pain assessment: subjec- tivity, objectivity, and the use of neurotechnology. Pain Physician.

2010;13:305–315.

85. Giordano J, Schatman ME. A crisis in chronic pain care: an ethical anal- ysis. Part two: proposed structure and function of an ethics of pain medicine. Pain Physician. 2008;11:589–595.

86. Giordano J, Schatman ME. A crisis in chronic pain care: an ethi- cal analysis. Part three: toward an integrative, multi-disciplinary pain medicine built around the needs of the patient. Pain Physician. 2008;11:

775–784.

87. Leroy PL, Schipper DM, Knape HJ. Professional skills and competence for safe and effective procedural sedation in children: recommenda- tions based on a systematic review of the literature. Int J Pediatr.

2010;2010:934298.

SUPPORTING INFORMATION

Additional supporting information may be found online in the Support- ing Information section at the end of the article.

How to cite this article: Maslak K, Favara-Scacco C, Bar- chitta M, et al. General anesthesia, conscious sedation, or noth- ing: Decision-making by children during painful procedures. Pediatr Blood Cancer. 2019;e27600. https://doi.org/10.1002/