Th e second seminal event was related to Anand \200\231s work but occurred in the US and wa s not research but one family \200\231s experi- ence. Like Anand \200\231s research, the st ory of Jeff rey Lawson focused on neonatal anesthesia and it too was debated in the public arena through the media. Jeff rey Lawson was born in February 1985, at 25 \200\22326 weeks gestational age, weighing 760 grams, and was admitted to the Washington National Children \200\231s Hospital for treatment of patent ductus arteriosus \200\224a not uncommon prob- l em in a premature infant. Th e ductus arteriosus is a blood vessel that permits blood to ci rculate through the baby \200\231s lungs before birth, closing a few days aft er birth. A p atent ductus arteriosus leads to abnormal blood fl ow between the aorta and pulmonary arter y, two major blood vessels that carry blood from the heart. Aft er some medical attempts to correct this condition, Jeff rey Lawson underwent open heart surgery to correct this abnor mal- ity. His mother described Jeff rey \200\231s anesthesia during the surgery in this way : Along with these early studies which identifi ed the problem of recurrent pains, abdominal pain, and headache in childhood, and undertreatment of postoperative pain in children, work was begin- ning to untangle the cry of infants, crying long being regarded as symptomatic of pain and distress in infants. In the 1960s, auditory and spectographic cry analysis of i nfants was systematized by Ole Wasz-H ckert and colleagues in Finland (Wasz-H ckert e t al., 1968). Th is work was sophisticated and well respected, and dealed with pain and oth er types of cries, but did not infl uence the investi- gation of pain outside of cry analys is. Jeff rey was awake through it all. Th e anesthesiologist paralyzed him with pavulon, a drug that left him unable to move, but totally con- scious. When I questioned the anesthesiolog ist later she said Jeff rey was too sick to tolerate powerful anesthetics. Anyway, she said , it had never been demonstrated to her that premature babies feel pain. (Lawson, 1986, pp. 124 \200\223125) Following surgery, Jeff rey went into shock, catabolized, and suf- fered heart, kidney, and liver failure. He died on 31 March 1985, 5 weeks following surgery. Ms Lawson contacted ma ny professional and social service agencies and other individuals to support her belief tha t babies should receive pain control for surgical proce- dures before her story was picked up by the media. Th e most seminal developments to draw attention to pain in infants and children were two e vents in the 1980s. Th e fi rst was a series of studies by Kanwaljeet Singh Anand as a PhD student at Oxford University. With support from a Rhodes Scholarship and the John Radcliff e Hospital, Anand began one of the fi rst research programs on pain in neonates. Anand deve loped sophisticated In writing the story of Jeff rey Lawson for Th e Washington Post , Sandy Rovner quoted Will is McGill, Chair of Anesthesia at the SECTION 1 introduction 8 Children \200\231s Hospital National Medical Center. Dr McGill asserted that there were ris ks with anesthesia and that \200\230it doesn \200\231t do any good to have a dead patient who doesn \200\231t feel pain \200\231 (Rovner, 1986, p. 7). Th e article in Th e Washingto n Post triggered other coverage emphasizing that babies were undergoing surgery without ana es- thesia. Th e American Society of Anaesthesiologists (1987) and the American Academy of Pediatrics (1987) asserted that anaes- thesia should not be routinely withheld from neonate s. In 1996, the American Pain Society established the Jeff rey Lawson Award for Advocacy in Children \200\231s Pain Relief to honor Jeff rey Lawson and the contribution of his mother to the advancement of pain in infants and children. Th e Anand story in England and the Lawson case in the US were compelling. Th ey were follo wed by a dramatic increase in profes- sional and scientifi c interest in pain in children. Between 1981 and 1990, there were 2966 articles on pediatric pain with a striking increase occurring in the 1980s (Guardiola and Ba os, 1993) and an upsurge in articles on pain in neonates (Ba os et al., 2001). Books on some specifi c pains in childhood, such as Aple y \200\231s book on abdominal pain (1959), had already appeared, but now, the fi rst books covering the broad area of childhood pain were published (Table 1.2 ). Most of these books have been directed to health pro- fessionals but some focused on helping parents to manage their children \200\231s pain (Table 1.3 ). Table 1.2 Books for health professionals on pain in infants, children, or adolescents Author(s) Title Year Ross and Ross 1988 Childhood pain: Current issues, research and treatment McGrath 1989 Pain in children: Nature, assessment, and treatment Schechter and Berde 1993 Pain in infants, children and adolescents Kuttner 1997 A child in pain: How to help, what to do Yaster et al. 1997 Pediatric pain management and sedation handbook Finley and McGrath (eds) 1998 Measurement of pain in infants and children Dahlquist 1999 Pediatric pain management Finley and McGrath 2001 Acute and procedure pain in infants and children Anand et al. (eds) Pain in neonates and infants (three editions) 2002, 2004, 2007 McGrath and Finley 2003 Pediatric pain: Biological and social contexts Tobias and Deshpande Pediatric pain management for primary care (2nd edn) 2004 Finley et al. (eds) 2006 Bringing pain relief to children: Treatment approaches Oberlander 2006 Pain in children and adults with developmental disabilities Rogers 2008 Managing persistent pain in adolescents Walco and Goldschneider (eds) 2008 Pain in children: A guide for primary care Twycross et al. (eds) 2009 Managing pain in children Kuttner 2010 A child in pain: What health professionals can do to help McClain and Suresh (eds) 2011 Handbook of pediatric chronic pain: Current science and integrative practice Oakes 2011 Compact clinical guide to infant and child pain management: An evidence-based approach for nurses Chambers et al. 2012 Pediatric pain: A clinical casebook Palermo 2012 CBT for chronic pain in children and adolescents Table 1.3 Books for parents on managing children \200\231s pain Author(s) Title Year Finley and Turner 1992 Making cancer less painful: A handbook for parents McGrath et al. 1994 Pain, pain go away: Helping children with pain Kuttner 1997 A child in pain: How to help, What to do Krane and Sinberg 2005 Relieve your child \200\231s chronic pain: A doctor \200\231s program for easing headaches, abdominal pain, \201 bromyalgia, juvenile rheumatoid arthritis, and more Zeltzer and Schlank 2005 Conquering your child \200\231s chronic pain: A pediatrician \200\231s guide to reclaiming a normal childhood CHAPTER 1 history of pain in children 9 Th e International Association for the Study of Pain established a Special Interest Group o n Pain in Childhood (<http://www.child- pain.org>) in the 1980s. One of its activities is t he International Symposium on Pediatric Pain (<http://childpain.org/ispp.shtml>), the fi rs t was held in Seattle in 1988. Th e PEDIATRIC-PAIN elec- tronic discussion list began in th e 1990s (PEDIATRIC-PAIN@ lists.dal.ca>). At present it has over 800 members and remains an active discussion forum. Th e Pediatric Pain Letter (<http://www. childpain.org.ppl>) began in 1996. Th e International Pediatric Pain Forum is another pediatric pain meeting. It is held every 2 \200\2233 years on a focused theme (<http://pediatric-pain.ca/content/IFPP>). on children \200\231s pain in the Western world. Recently, researchers have come to recogni ze that the pain of children in underdeveloped countries is even more greatly challenged by the lack of educa- tion about child pain and limited or no access to appropriate pain mana gement. Only fools try to predict the future but some emerging trends are evident. Th ere will cert ainly be greater advances in our understand- ing of the biomedical, social, cultural, clini cal, and health systems science of pain in children. Th e yet to be resolved problem of ins uf- fi cient access to scientifi cally demonstrated treatments for pain for infants, childr en, and adolescents is slowly being recognized, and is leading to new ways of developing in terventions such as Web- based alternatives (see Stinson and Jibb, Chapter 55, this volume) . Th e need for personalized approaches to care is being understood. But will all of our pr ogress in science make a diff erence in practice? Will the fi nancial crisis that is grippi ng many parts of the world lead to less care for the most vulnerable who have the least abi lity to demand better care? Will there be better solutions to the inad- equate management o f pain in children in all parts of the world? We need to consider and take responsibility f or narrowing the gap between the generation of evidence and its application in the real wor ld where pain occurs. It is diffi cult to know how much of this increased attention on children \200\231s pain wa s due to the public attention and debate that surrounded the research of Anand, or the trag ic story of Jeff rey Lawson. Th e research in this area was gaining suffi cient momen- tum for the fi rst pediatric pain books to appear and the fi rst pae- diatric pain conference t o be held. Nevertheless, there is no doubt that these events highlighted in undeniable ways the assumptions and misconceptions that prevailed and persisted in children \200\231s pain , their serious potential for harm, and lent urgency to the need for change. Th e contributions of modern science to pediatric pain and the future Science relies on ass essment and measurement. Until the last three decades of the twentieth century, measurement of children \200\231s pain relied on unstandardized, largely descriptive approaches to det er- mine whether a child was in pain. Empirical research confi rmed that an infant \200\231 s cry due to distress had specifi c spectrographic properties (Wasz-H ckert et al., 1968 ), and that cries due to pain, hunger, and fear could be distinguished from each other by t rained observers and by spectrographic analysis (Anand and Hickey, 1987). Moreover, there a re behavioral and spectrographic diff erences in the pain cries of healthy full-term neonat es, preterm neonates, and neonates with neurological impairments (Anand and Hickey, 1987). Facial characteristics of a child in pain, the features noted by Starr in 1895 with respect to the brow, the nostrils, and the upper lip, are characteristics of the pain face now cap tured in pediatric pain measures such as the Neonatal Facial Action Coding System (Grunau a nd Craig, 1987). In the 1970s and 1980s, the fi rst self- report measures of pain were deve loped and later, self-report meas- ures based on facial characteristics \200\224e.g. the Fa ces Pain Scale (Bieri et al., 1990) and the Faces Pain Scale \200\224Revised (Hicks et al., 2001). In addition, observational measures of children \200\231s pain behavior, particular ly in the postoperative context, were constructed and validated. Measures were also develop ed for children with devel- opmental disabilities and for pain in infants. Such tools provi ded the capacity to measure the eff ectiveness of pain intervention for infants, children, and adolescents. Much of this work is reviewed in the books mentioned in Table 1.2 and in S ection 5 of this book. Acknowledgements McGrath \200\231s research is supported by grants from the Canadian Instit utes of Health Research and his Canada Research Chair. Th is chapter is based on previous p ublications including McGrath (2011), McGrath and Unruh (1987), and (Unruh, 1992). References American Academy of Pediatrics Committee on Fetus and Newborn, Committee on Drug s, Section on Anesthesiology, Section on Surgery. (1987). Neonatal anesthesia. Pediatrics , 80 , 446 . American Pain Society, Jeff rey Lawson Award for Advocacy in Children \200\231s Pain Relief . Available at: <http://www.americanpainsociety.org/about- aps/awards/jeff rey-lawson-award -past-award-winners.html>. American Society of Anesthesiologists. (1987). Neonatal anesthesia. ASA Newsletter , December 15, p. 2. Anand, K. J., Brown, M. J., Bloom, S. R., and Aynsley-Green, A. (1985). Studies on the horm onal regulation of fuel metabolism in the human newborn infant undergoing anesthesia and su rgery. Horm Res , 22 ( 1 \200\2232 ), 115 \200\223128 . Anand, K. J., Hansen, D. D., and Hickey, P. R. (1990). 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Th ere was greater appreciation of the immediate and long- term c onsequences of pain in childhood due to physical and sexual abuse. In the last 10 years the re has been a more solid focus on the social and cultural context of children \200\231s pai n and the role of parents in children \200\231s learning about pain. A great deal of work h as focused Anand, K. J. S., Stevens, B. J., and McGrath, P. J. (2007). Pain in neonates and infants (3rd edn). Amsterdam : Elsevier . Anonymous. (1987). Pain killer shock in babies \200\231 operations. Daily Mail , July 28. Anonymous. (1988). MP apologizes. Br Med J , 297 , 865 . Apley, J. (1959). Th e child with abdominal pains . Springfi eld, IL : Charles C. Th omas . SECTION 1 introduction 10 Holt, L. E. (1897). Th e diseases of infancy and childhood: for the use of students Ba os, J. E., Ruiz, G., and Guardiola, E. (2001). An analysis of articles on neonatal pa in published from 1965 to 1999. 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(1993). Is there an increasing interest in pediatric pain ? Analysis of the biomedical articles published in the 1980s . J Pain Symptom Manag, 8 (7), 449 \200\223450 . Newton, H. (2011). \200\230Very sore nights and days \200\231: the child \200\231s experie nce of illness in early modern England, c.1580 \200\2231720. Med Hist, 55 , 153 \200\223182 . Oakes, L. L. (2011). Compact clinical guide to infant and child pain management: Hewer, C. L. (1923). Anesthesia in children . New York: Paul B. Hober. Hicks, C. L., von Ba eyer, C. L., Spaff ord, P., van Korlaar, I., and Goodenough, B. (2001). Th e Faces Pain Sca le \200\224Revised: toward a common metric in pediatric pain measurement. Pain , 93 , 173 \200\223183 . an evidence-based approach for nurses . New York : Springer . Oberlander, T. (2006). Pain in children and adults with developmental disabilities . Baltimore, MD : Brookes Publishing . CHAPTER 1 history of pain in children 11 Still, G. F. (1931). 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CHAPTER 2 Prevalence and distribution of pain in children Bonnie J. Stevens and William T. Zempsky Introduction Th ere has been a paucity of studies that have attempted to deter- mine the pr evalence and distribution of pain (acute or chronic) in large groups of infants and childre n across multiple settings. Rather, there is a preponderance of single-site studies that re port local prevalence and distribution of pediatric pain data. Although one could extrapola te these results to gain a broader sense of pain in children, this approach would garner on ly a general estimate at best. Furthermore, studies of pain prevalence vary as to the pain and prevalence defi nitions used, the reporting period (i.e. point prevalence, period preva lence ), and stratifi cation by duration of involvement, which makes comparison of fi nding s challenging. In this chapter, defi nitions of prevalence and acute and chronic pain will be clarifi ed and used to explore the prevalence and distribu- tion of pain in hospitals an d in community health care settings for infants and children. Recommendations for clinical practice and future research will be proposed. a predictable course that coincides with a \200\230usual \200\231 healing time and subside s within a few hours or days (e.g. postoperative pain). Chronic pain is frequently defi ned as pain without appar- ent biological value that has pe rsisted beyond the normal tissue healing time. Chronic pain promotes an extended and malada p- tive stress response that includes neuroendocrine dysregula- tion, fatigue, dysphoria, m yalgia and impaired psychological and social functioning. Th e temporal delineation of \200\230healing time \200\231 is frequently debated but is usually stated as somewhere betw een 3 and 6 months. Th e International Association for the Study of Pain (IASP) defi nes ch ronic pain as pain that lasts longer than 3 months (<http://www.iasp-pain.org/Content/Navig ationMenu/ GeneralResourceLinks/PainDefi nitions/>). Th e temporal deline- ation presents a dditional dilemmas when considering prolonged pain in infants and young children and in tho se with disabilities who either are incapable of or may have diffi culty in reporting their pain. For further discussion on assessment of pain in vulner- able populations, see Lee an d Stevens (Chapter 35, this volume) and Below et al. (Chapter 16, this volume). Chronic pai n can either be recurrent or persistent. Recurrent pain includes episodic acute pains such as headaches and stomach aches; more persistent pain is more enduring pains includes backac hes. De \201 nitions Prevalence is the proportion of a population found to have a con- dition ( typically a disease) and is determined by comparing the number of individuals with the cond ition with the total number of people studied. \200\230Point prevalence \200\231 is the pr oportion of a population that has the condition at a specifi c point in time. \200\230Peri od preva- lence \200\231 is the proportion of a population that has the condition at some t ime during a given period (e.g. neonatal period during the fi rst year of life). Prevalence is diff erent from incidence, which is a measure of new cases arising in a population over a given period. Acute pain signals a specifi c nociceptive event, injury, or ill- ness and is usually limited to a short period of time. Acute pain is frequently associated with sud den-onset, short, sharp, tissue- damaging procedures (e.g. heel lances, fi nger pricks, int ravenous starts, intramuscular injections, lumbar punctures) for diagnostic or non-tissue-d amaging procedures (e.g. suctioning) for therapeu- tic purposes. Acute pain typically subsi des with eff ective manage- ment aft er the painful event (e.g. heel lance) or when the ill ness or injury resolves; however, it can be prolonged and reoccur in mul- tiple episodes ov er time. Acute prolonged pain extends beyond that of the short-sharp, tissue damaging proce dural pain but usually has Pain in hospitalized infants and children Acute pain Neonates and infants Acute pain during infancy was ignored until approximately three decades ago due to biases and misconceptions regarding the matu- rity of the infant \200\231s developing nervous system, their inabilit y to ver- bally report pain, and their perceived inability to remember pain. Many infants e ndured frequent invasive medical procedures such as repetitive heel sticks and even surgery without benefi t of anaes- thesia or analgesia. More recently, these beliefs and misconcep tions are rarely stated or acknowledged due to enhanced understand- ing of the developmenta l neurobiology of infant pain pathways and supraspinal processing. However, infants, and pa rticularly hospitalized neonates, continue to be exposed to multiple painful procedures for diagnostic and treatment purposes and persistent, prolonged, or even chronic pain. CHAPTER 2 prevalence and distribution of pain in children 13 Several researchers have documented the incidence, preva- lence, and frequency of procedura l pain in infants hospitalized in the neonatal intensive care unit (NICU). Johnston and col leagues (2011) conducted a prospective observational study in 14 Canadian NICUs documenting both tissue-damaging (e.g. heel lance) and non-tissue-damaging (e.g. suctioning) procedure s over a 1-week period. A total of 3508 tissue-damaging (mean = 5.8, standard deviation (SD ) = 15) and 14 085 (mean = 25.6, SD = 15) non-tissue- damaging procedures were recorded for 582 infants. Twelve years earlier, Johnston and colleagues (1997) reported that the averag e number of painful procedures per infants was 14, similar to other prevalence surveys of i nfant procedural pain at the time (Anand and Selankio, 1996; Barker and Rutter, 1995; Ferna ndez and Rees, 1994; Porter et al., 1997; Simons et al., 2003). moderate to severe pain (44%) than those on medical units (13%). Other studies described ev en higher prevalence rates of moderate to severe pain intensity; Taylor et al. (2008) state d that approximately 50% of hospitalized children from one tertiary level academic pae- dia tric hospital reported moderate to severe pain during their stay with 23% reporting persist ent pain. Several studies indicate that child risk factors (e.g. age) and hos- pital service (e.g. su rgical) are associated with the highest levels of moderate to severe pain (e.g. Groenewald et al., 2012; Stevens et al., 2011). Chronic pain Neonates and infants As with acute pain, health professionals responsible for the care provision of infants and parents may harbor misconceptions or lack understanding o f prolonged, persistent, or chronic pain in infancy. In a recent study by Pillai Riddell et al. (2009), two types of prolonged pain were described by the health professionals for hos pitalized infants including \200\230chronically pained \200\231 (a pain state that involve d prolonged exposure of the infant to repetitive pain- ful procedures, which was characteri zed by overlap with recovery from a previous painful procedure) and \200\230chronic pain \200\231 (related to the aft ermath of acute pain that is prolonged and has not resolved du e to unknown cause) in infants. Examples of infants exhibiting chronic pain include: (1) a subgroup of postsurgical gastrointes- tinal patients ( \200\230short-gut babies \200\231) w ho continue to be distressed weeks aft er the completion of painful surgeries and reduction s, (2) infants with chronic intestinal problems who suff er repetitive bouts of abdominal d iscomfort due to an inability to tolerate feeds and a distended abdomen, (3) infants who su ff er from osteogen- esis imperfecta, (4) infants who have sickle cell disease, (5) infants who have invasive malignant tumors, and (6) extremely low birth weight babies seen months/ years later in follow-up clinics who would not weight bear or walk on their scarred heels ( i.e. from repetitive heel lancing). In Johnston et al. \200\231s 2011 study, the mean of 5.8 (SD 15, range 0 \200\22389) tissue -damaging procedures per infant appears to be a signif- icant improvement. In 1996, no infa nts received pharmacological interventions for heel lancing \200\224the most common of the tissue- damaging procedures \200\224whereas in 2011, of the 46% of infants who were exposed to tissue-damaging procedures, 14.5% were admin- istered opioids and 14.3% received sweet- tasting solutions such as sucrose or glucose. Johnston et al. concluded that although the p revalence of painful procedures was lower in the more recent sur- vey, pain management of p rocedures had generally not improved signifi cantly. In other countries, hospitalized infants were reported to experi- ence an average of 12 tis sue-damaging procedures per day (Carbajal et al., 2008). Carbajal and colleagues reported t hat, of 42 413 painful procedures performed on 430 infants, 79.2% of patients received no p reprocedural analgesia, 2.1% received pharmacological interven- tions, while 18.2% painful procedures were managed using non- pharmacological strategies. Th ese data continue to support that there are a signifi cant number of painful procedures performed on hospitalized infants and a gross undertreatment of procedural pain in infants. Anecdotal evidence from professional and parental caregivers suggests that there are signif i cant numbers of medically comprised infants that are potentially experiencing chronic pai n; however, there are no precise estimates of prevalence. Th ese infants and young children may be even more vulnerable to the consequences of chronic pain and suff ering as manageme nt strategies that are geared for the acute pain context may be ineff ective. Th e longer u ntreated chronic pain continues in infancy, the more likely that maladaptive responses will develop later in life (Buskila et al., 2003; Hamilton and Zeltzer, 1994). Potential respon ses could include central nerv- ous system sensitization, increased functional disability ( Campo et al., 2001; Kashikar-Zuck et al., 2001), dysfunctional cognitive or emotional proce sses, (Eccleston and Crombez, 1999; Taddio, 1999; Taddio et al., 2002), and disrupted famil y functioning. Children and adolescents Several surveys have also been conducted to evaluate the preva- le nce of acute pain in hospitalized children and adolescents. In a recent audit of the epidem iology of procedural pain and pain management in 32 hospital units in eight pediatric hospi tals in Canada, 2987 of 3822 children in the study had undergone at least one painful proce dure in the preceding 24 hours with a mean of 6.3 painful procedures per child (Stevens et al., 2011). Of those who had a painful procedure, 78.1% had a pain management interven- tio n recorded; however, only 28.3% had one or more pain manage- ment interventions administere d and documented specifi cally for the painful procedure (Stevens et al., 2011). Other researchers have focused specifi cally on acute pain inten- sity that is moderate to severe (e.g. >3 or 4 on a 10-point scale). Generally, prevalence rates from these studies a re consistent and high; for example, Ellis et al. (2002) and Cummings et al. (1996) in cros s-sectional studies reported a prevalence rate of 20 \200\22321% of clinically signifi cant pain in hospitalized children in Canada. More recently, Groenewald et al. (2012) reported a prevalence rate of 27% of moderate to severe pain in hospitalized children in the USA. Ad olescents and infants exhibited higher prevalence rates (38% and 32% respectively) than oth er children (17%). In addition, those hospitalized on surgical units demonstrated much high er rates of Children and adolescents Chronic pain has serious developmental and functional implica- tio ns for children and adolescents (King et al., 2011). Chronic pain is common within chronic disease states (e.g. juvenile idiopathic arthritis (JIA), cancer) as well as outside diseas e states. As chronic pain may be associated both with children who are hospitalized, as wel l as those in the community, these two areas will be discussed together in this section, al though chronic pain may also occur in children and adolescents cared for at home or in the community. SECTION 1 introduction 14 Injection pain Needle procedures, including injections, venous access proce- dures, heel st icks, and fi nger lances, are likely to be the most preva- lent causes of iatrogenic pain. A child \200\231s interactions with medical providers are oft en colored by the child \200 \231s fear that s/he will get a shot or a poke. In the USA, healthy children undergo over t hree dozen separate vaccine injections by the time they reach adulthood (<http://www.immuni ze.org/catg.d/p4050.pdf>). A recent study demonstrated that approximately two-thirds of chi ldren have a fear of needles (Taddio et al., 2012). Th is problem persists into adult- hood as approximately 25% of adults are afraid of needles (Taddio et al., 2012) and 10% meet th e criteria for needle phobia (Hamilton 1995). For further discussion of pain associated wit h needle proce- dures see Taddio (Chapter 19, this volume). Th e fi rst comprehensive review on the epidemiology of pain was published by Goodman and M cGrath over two decades ago (Goodman and McGrath, 1991). Prevalence rates, time periods, me asures utilized, and approaches to measurement are variable: