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Pain Assessment in the Patient Unable to Self-Report: Clinical Practice Recommendations in Support of the ASPMN 2019 Position Statement

Published:October 12, 2019DOI:https://doi.org/10.1016/j.pmn.2019.07.005

      Abstract

      Pain is a subjective experience, unfortunately, some patients cannot provide a self-report of pain verbally, in writing, or by other means. In patients who are unable to self-report pain, other strategies must be used to infer pain and evaluate interventions. In support of the ASPMN position statement “Pain Assessment in the Patient Unable to Self-Report”, this paper provides clinical practice recommendations for five populations in which difficulty communicating pain often exists: neonates, toddlers and young children, persons with intellectual disabilities, critically ill/unconscious patients, older adults with advanced dementia, and patients at the end of life. Nurses are integral to ensuring assessment and treatment of these vulnerable populations.
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      References

        • Abbey J.
        • Piller N.
        • De Bellis A.
        • Esterman A.
        • Parker D.
        • Giles L.
        • Lowcay B.
        The Abbey pain scale: A 1-minute numerical indicator for people with end-stage dementia.
        International Journal of Palliative Nursing. 2004; 10: 6-13
        • Al Sutari M.M.
        • Abdalrahim M.S.
        • Hamdan-Mansour A.M.
        • Ayasrah S.M.
        Pain among mechanically ventilated patients in critical care units.
        Journal of Research in Medical Sciences: the Official Journal of Isfahan University of Medical Sciences. 2014; 19: 726-732
        • Ambuel B.
        • Hamlett K.W.
        • Marx C.M.
        • Blumer J.L.
        Assessing distress in pediatric intensive care environments: The COMFORT scale.
        Journal of Pediatric Psychology. 1992; 17: 95-109
        • American Academy of Pediatrics
        • Committee on Fetus and Newborn and Section on Anesthesiology and Pain Medicine
        policy statement. Prevention and management of procedural pain in the neonate: An update.
        Pediatrics. 2016; 137
        • American Nurses Association
        Code of Ethics for Nurses.
        (Retrieved from)
        https://www.nursingworld.org/coe-view-only
        Date: 2015
        Date accessed: March 1, 2019
        • American Nurses Association
        The ethical responsibility to manage pain and the suffering it causes. ANA Position Statement.
        (Retrieved from)
        • American Pain Society
        Assessment and management of children with chronic pain: A position statement from the American pain society.
        (Retrieved from)
        • American Pain Society
        Principles of analgesic use.
        7 th ed. American Pain Society, Glenview, IL2016
        • Ammaturo D.A.
        • Hadjistavropoulos T.
        • Williams J.
        Pain in dementia: Use of observational pain assessment tools by people who are not health professionals.
        Pain Medicine. 2017; 18: 1895-1907
        • Andersen R.D.
        • Langius-Eklöf A.
        • Nakstad B.
        • Bernklev T.
        • Jylli L.
        The measurement properties of pediatric observational pain scales: A systematic review of reviews.
        International Journal of Nursing Studies. 2017; 73: 93-101
        • Apinis C.
        • Tousignant M.
        • Arcand M.
        • Tousignant-Laflamme Y.
        Can adding a standardized observational tool to interdisciplinary evaluation enhance the detection of pain in older adults with cognitive impairments?.
        Pain Medicine. 2014; 15: 32-41
        • Arbour C.
        • Choiniere M.
        • Topolovec-Vranic J.
        • Loiselle C.G.
        • Puntillo K.
        • Gelinas C.
        Detecting pain in traumatic brain-injured patients with different levels of consciousness during common procedures in the ICU: Typical or atypical behaviors?.
        The Clinical Journal of Pain. 2014; 30: 960-969
        • Arif-Rahu M.
        • Fisher D.
        • Matsuda Y.
        Biobehavioral measures for pain in the pediatric patient.
        Pain Management Nursing. 2012; 13: 157-168
        • Azevedo-Santos I.F.
        • DeSantana J.M.
        Pain measurement techniques: Spotlight on mechanically ventilated patients.
        Journal of Pain Research. 2018; 11: 2969-2980
        • Benoit B.
        • Martin-Misener R.
        • Latimer M.
        • Campbell-Yeo M.
        Breast-feeding analgesia in infants: An update on the current state of evidence.
        The Journal of Perinatal & Neonatal Nursing. 2017; 31: 145-159
        • Beyer J.E.
        • Denyes M.J.
        • Villarruel A.M.
        The creation, validation, and continuing development of the oucher: A measure of pain intensity in children.
        Journal of Pediatric Nursing. 1992; 7: 335-346
        • Birnie K.A.
        • Hundert A.S.
        • Lalloo C.
        • Nguyen C.
        • Stinson J.N.
        Recommendations for selection of self-report pain intensity measures in children and adolescents: A systematic review and quality assessment of measurement properties.
        Pain. 2019; 160: 5-18
        • Bottos S.
        • Chambers C.T.
        The epidemiology of pain in developmental disabilities.
        in: Oberlander T.F. Symons F.J. Pain in children and adults with developmental disabilities. Paul H. Brookes Publishing, Baltimore, MD2006: 67-87
        • Breau L.M.
        • Camfield C.
        • McGrath P.J.
        • Rosmus C.
        • Finley G.A.
        Measuring pain accurately in children with cognitive impairments: Refinement of a caregiver scale.
        The Journal of Pediatrics. 2001; 138: 721-727
        • Breau L.M.
        • McGrath P.J.
        • Camfield C.
        • Rosmus C.
        • Finley G.A.
        Preliminary validation of an observational pain checklist for persons with cognitive impairments and inability to communicate verbally.
        Developmental Medicine and Child Neurology. 2000; 42: 609-616
        • Breau L.M.
        • McGrath P.J.
        • Camfield C.S.
        • Finley G.A.
        Psychometric properties of the non-communicating children’s pain checklist-revised.
        Pain. 2002; 99: 349-357
        • Burkitt C.C.
        • Breau L.M.
        • Zabalia M.
        Parental assessment of pain coping in individuals with intellectual and developmental disabilities.
        Research in Developmental Disabilities. 2011; 32: 1564-1571
        • Buttner W.
        • Finke W.
        Analysis of behavioural and physiological parameters for the assessment of postoperative analgesic demand in newborns, infants and young children: A comprehensive report on seven consecutive studies.
        Pediatric Anesthesia. 2000; 10: 303-318
        • Carr E.G.
        • Owen-DeSchryver J.S.
        Physical illness, pain, and problem behavior in minimally verbal people with developmental disabilities.
        Journal of Autism and Developmental Disorders. 2007; 37: 413-424
        • Chan J.Y.
        • von Baeyer C.L.
        Cognitive developmental influences on the ability of preschool-aged children to self-report their pain intensity.
        Pain. 2016; 157: 997-1001
        • Chan S.
        • Hadjistavropoulos T.
        • Williams J.
        • Lints-Martindale A.
        Evidence-based development and initial validation of the pain assessment checklist for seniors with limited ability to communicate-II (PACSLAC-II).
        The Clinical Journal of Pain. 2014; 30: 816-824
        • Chang J.
        • Versloot J.
        • Fashler S.R.
        • McCrystal K.N.
        • Craig K.D.
        Pain assessment in children: Validity of facial expression items in observational pain scales.
        The Clinical Journal of Pain. 2015; 31: 189-197
        • Chanques G.
        • Payen J.F.
        • Mercier G.
        • de Lattre S.
        • Viel E.
        • Jung B.
        • Cisse M.
        • Lefrant J.Y.
        • Jaber S.
        Assessing pain in non-intubated critically ill patients unable to self report: An adaptation of the Behavioral Pain Scale.
        Intensive Care Medicine. 2009; 35: 2060-2067
        • Chanques G.
        • Pohlman A.
        • Kress J.P.
        • Molinari N.
        • De Jong A.
        • Jaber S.
        • Hall J.B.
        Psychometric comparison of three behavioural scales for the assessment of pain in critically ill patients unable to self-report.
        Critical Care. 2014; 18: R160
        • Chanques G.
        • Sebbane M.
        • Barbotte E.
        • Viel E.
        • Eledjam J.J.
        • Jaber S.
        A prospective study of pain at rest: Incidence and characteristics of an unrecognized symptom in surgical and trauma versus medical intensive care unit patients.
        Anesthesiology. 2007; 107: 858-860
        • Chen-Lim M.L.
        • Zarnowsky C.
        • Green R.
        • Shaffer S.
        • Holtzer B.
        • Ely E.
        Optimizing the assessment of pain in children who are cognitively impaired through the quality improvement process.
        Journal of Pediatric Nursing. 2012; 27: 750-759
        • Chow S.
        • Chow R.
        • Lam M.
        • Rowbottom L.
        • Hollenberg D.
        • Friesen E.
        • Herrmann N.
        Pain assessment tools for older adults with dementia in long-term care facilities: A systematic review.
        Neurodegener Disease Management. 2016; 6: 525-538
        • Corbett A.
        • Achterberg W.
        • Husebo B.
        • Lobbezoo F.
        • de Vet H.
        • Kunz M.
        • Lautenbacher S.
        An international road map to improve pain assessment in people with impaired cognition: The development of the Pain Assessment in Impaired Cognition (PAIC) meta-tool.
        BMC Neurology. 2014; 14: 229
        • Coyne P.
        • Mulvenon C.
        • Paice J.A.
        American society for pain management nursing and hospice and palliative nurses association position statement: Pain management at the end of life.
        Pain Management Nursing. 2018; 19: 3-7
        • Crellin D.J.
        • Babl F.E.
        • Santamaria N.
        • Harrison D.
        The psychometric properties of the MBPS Scale used to assess procedural pain.
        The Journal of Pain. 2018; 19: 660-669
        • Crellin D.J.
        • Harrison D.
        • Santamaria N.
        • Babl F.E.
        Systematic review of the face, legs, activity, cry and consolability scale for assessing pain in infants and children: Is it reliable, valid, and feasible for use?.
        Pain. 2015; 156: 2132-2151
        • Dale C.M.
        • Prendergast V.
        • Gelinas C.
        • Rose L.
        Validation of the Critical-care Pain Observation Tool (CPOT) for the detection of oral-pharyngeal pain in critically ill adults.
        Journal of Critical Care. 2018; 48: 334-338
        • Davidson F.
        • Snow S.
        • Hayden J.A.
        • Chorney J.
        Psychological interventions in managing postoperative pain in children: A systematic review.
        Pain. 2016; 157: 1872-1886
        • Davies R.B.
        Pain in children with Down syndrome: Assessment and intervention by parents.
        Pain Management Nursing. 2010; 11: 259-267
        • De Jong A.
        • Molinari N.
        • De Lattre S.
        • Gniadek C.
        • Carr J.
        • Conseil M.
        • Susbielles M.P.
        • Jung B.
        • Jaber S.
        • Chanques G.
        Decreasing severe pain and serious adverse events while moving intensive care unit patients: A prospective interventional study (the NURSE-DO project).
        Critical Care. 2013; 17: R74
        • de Knegt N.C.
        • Evenhuis H.M.
        • Lobbezoo F.
        • Schuengel C.
        • Scherder E.J.
        Does format matter for comprehension of a facial affective scale and a numeric scale for pain by adults with Down syndrome?.
        Research in Developmental Disabilities. 2013; 34: 3442-3448
        • de Knegt N.C.
        • Pieper M.J.
        • Lobbezoo F.
        • Schuengel C.
        • Evenhuis H.M.
        • Passchier J.
        • Scherder E.J.
        Behavioral pain indicators in people with intellectual disabilities: A systematic review.
        The Journal of Pain. 2013; 14: 885-896
        • Desai A.
        • Aucott S.
        • Frank K.
        • Silbert-Flagg J.
        Comparing N-PASS and NIPS: Improving pain measurement in the neonate.
        Advances in Neonatal Care. 2018; 18: 260-266
        • Desai S.
        • Nanavati R.
        • Jasani B.
        • Kabra N.
        Comparison of neonatal pain, agitation, and sedation scale with premature infant pain profile for the assessment of acute prolonged pain in neonates on assisted ventilation: A prospective observational study.
        Indian Journal of Palliative Care. 2017; 23: 287-292
        • Devlin J.W.
        • Skrobik Y.
        • Gélinas C.
        • Needham D.M.
        • Slooter A.J.
        • Pandharipande P.P.
        • Rochwerg B.
        Clinical practice guidelines for the prevention and management of pain, agitation/sedation, delirium, immobility, and sleep disruption in adult patients in the ICU.
        Critical Care Medicine. 2018; 46: e825-e873
        • Dubois A.
        • Capdevila X.
        • Bringuier S.
        • Pry R.
        Pain expression in children with an intellectual disability.
        European Journal of Pain. 2010; 14: 654-660
        • Erdal A.
        • Flo E.
        • Aarsland D.
        • Selbaek G.
        • Ballard C.
        • Slettebo D.D.
        • Husebo B.S.
        Tolerability of buprenorphine transdermal system in nursing home patients with advanced dementia: A randomized, placebo-controlled trial (DEP.PAIN.DEM).
        Clinical Interventions in Aging. 2018; 13: 935-946
        • Ersek M.
        • Herr K.
        • Hilgeman M.M.
        • Neradilek M.B.
        • Polissar N.
        • Cook K.
        • Nelson F.X.
        Developing a pain intensity measure for persons with dementia: Initial construction and testing.
        Pain Medicine. 2019; 20: 1078-1092
        • Ersek M.
        • Herr K.
        • Neradilek M.B.
        • Buck H.G.
        • Black B.
        Comparing the psychometric properties of the checklist of nonverbal pain behaviors (CNPI) and the pain assessment in advanced dementia (PAIN-AD) instruments.
        Pain Medicine. 2010; 11: 395-404
        • Ersek M.
        • Neradilek M.B.
        • Herr K.
        • Hilgeman M.M.
        • Nash P.
        • Polissar N.
        • Nelson F.X.
        Psychometric evaluation of a pain intensity measure for persons with dementia.
        Pain Medicine. 2019; 20: 1093-1104
        • Ersek M.
        • Polissar N.
        • Neradilek M.B.
        Development of a composite pain measure for persons with advanced dementia: Exploratory analyses in self-reporting nursing home residents.
        Journal of Pain Symptom Management. 2011; 41: 566-579
        • Feldt K.S.
        The checklist of nonverbal pain indicators (CNPI).
        Pain Management Nursing. 2000; 1: 13-21
        • Feldt K.S.
        • Ryden M.B.
        • Miles S.
        Treatment of pain in cognitively impaired compared with cognitively intact older patients with hip-fracture.
        Journal of the American Geriatrics Society. 1998; 46: 1079-1085
        • Fink R.M.
        • Gates R.A.
        • Montgomery
        Pain assessment.
        4 th ed. Oxford University Press, New York2015
        • Fuchs-Lacelle S.
        • Hadjistavropoulos T.
        Development and preliminary validation of the pain assessment checklist for seniors with limited ability to communicate (PACSLAC).
        Pain Management Nursing. 2004; 5: 37-49
        • Fuchs-Lacelle S.
        • Hadjistavropoulos T.
        A checklist for pain assessment in long-term care. PACSLAC: Pain assessment checklist for seniors with limited ability to communicate.
        Canadian Nursing Home. 2005; 16: 4-7
        • Gagliese L.
        • Rodin R.
        • Chan V.
        • Stevens B.
        • Zimmermann C.
        How do healthcare workers judge pain in older palliative care patients with delirium near the end of life?.
        Palliative & Supportive Care. 2016; 14: 151-158
        • Ge X.
        • Tao J.R.
        • Wang J.
        • Pan S.M.
        • Wang Y.W.
        Bayesian estimation on diagnostic performance of face, legs, activity, cry, and consolability and Neonatal Infant Pain Scale for infant pain assessment in the absence of a gold standard.
        Pediatric Anesthesia. 2015; 25: 834-839
        • Gélinas C.
        Pain assessment in the critically ill adult: Recent evidence and new trends.
        Intensive and Critical Care Nursing. 2016; 34: 1-11
        • Gélinas C.
        • Boitor M.
        • Puntillo K.A.
        • Arbour C.
        • Topolovec-Vranic J.
        • Cusimano M.D.
        • Streiner D.L.
        Behaviors indicative of pain in brain-injured adult patients with different levels of consciousness in the intensive care unit.
        Journal of Pain and Symptom Management. 2019; 57: 761-773
        • Gélinas C.
        • Fillion L.
        • Puntillo K.A.
        Item selection and content validity of the Critical-Care Pain Observation Tool for non-verbal adults.
        Journal of Advanced Nursing. 2009; 65: 203-216
        • Gélinas C.
        • Fillion L.
        • Puntillo K.A.
        • Viens C.
        • Fortier M.
        Validation of the critical-care pain observation tool in adult patients.
        American Journal of Critical Care. 2006; 15: 420-427
        • Gélinas C.
        • Puntillo K.
        Assessing pain in critically ill adults. American Association of Critical-Care Nurses practice alert.
        Critical Care Nurse. 2018; 38: e13-e16
        • Gélinas C.
        • Puntillo K.A.
        • Levin P.
        • Azoulay E.
        The behavior pain assessment tool for critically ill adults: A validation study in 28 countries.
        Pain. 2017; 158: 811-821
        • Genik L.M.
        • McMurtry C.M.
        • Breau L.M.
        Caring for children with intellectual disabilities part 2: Detailed analyses of factors involved in respite workers’ reported assessment and care decisions.
        Research in Develpmental Disabilities. 2017; 63: 1-10
        • Grunau R.
        • Craig K.
        Facial activity as a measure of neonatal pain expression.
        Advances in Pain Research and Therapy. 1990; 15: 147-155
        • Hadjistavropoulos T.
        • Browne M.E.
        • Prkachin K.M.
        • Taati B.
        • Ashraf A.
        • Mihailidis A.
        Pain in severe dementia: A comparison of a fine-grained assessment approach to an observational checklist designed for clinical settings.
        European Journal of Pain. 2018; 22: 915-925
        • Hadjistavropoulos T.
        • Herr K.
        • Turk D.C.
        • Fine P.G.
        • Dworkin R.H.
        • Helme R.
        • Beattie B.L.
        An interdisciplinary expert consensus statement on assessment of pain in older persons.
        The Clinical Journal of Pain. 2007; 23: S1-S43
        • Hatfield L.A.
        • Murphy N.
        • Karp K.
        • Polomano R.C.
        A systematic review of behavioral and environmental interventions for procedural pain management in preterm infants.
        Journal of Pediatric Nursing. 2019; 44: 22-30
        • Herr K.
        • Coyne P.
        • Ely E.
        • Gelinas C.
        • Manworren R.
        ASPMN Position Statement: Pain assessment in the patient unable to self report.
        Pain Management Nursing. 2019; ([Epub ahead of print].)https://doi.org/10.1016/j.pmn.2019.07.007
        • Herr K.
        • Coyne P.J.
        • McCaffery M.
        • Manworren R.
        • Merkel S.
        Pain assessment in the patient unable to self-report: Position statement with clinical practice recommendations.
        Pain Management Nursing. 2011; 12: 230-250
        • Herr K.
        • Gibson S.
        • Hadjistavropoulos T.
        Chapter 28. Pain.
        John Wiley & Sons Ltd, Hoboken, NJ2018
        • Herr K.
        • Sefcik J.
        • Neradilek M.B.
        • Hilgeman M.M.
        • Nash P.
        • Ersek M.
        Mobility-Observation-Behavior-intensity-Dementia pain scale (MOBID): Investigation of psychometrics in US nursing homes.
        Pain Management Nursing. 2019; 20: 253-260
        • Hicks C.L.
        • von Baeyer C.L.
        • Spafford P.A.
        • van Korlaar I.
        • Goodenough B.
        The Faces Pain Scale–Revised: Toward a common metric in pediatric pain measurement.
        Pain. 2001; 93: 173-183
        • Holen J.C.
        • Saltvedt I.
        • Fayers P.M.
        • Hjermstad M.J.
        • Loge J.H.
        • Kaasa S.
        Doloplus-2, a valid tool for behavioural pain assessment?.
        BMC Geriatrics. 2007; 7: 29
        • Hosie A.
        • Davidson P.M.
        • Agar M.
        • Sanderson C.R.
        • Phillips J.
        Delirium prevalence, incidence, and implications for screening in specialist palliative care inpatient settings: A systematic review.
        Palliative Medicine. 2013; 27: 486-498
        • Hummel P.
        Psychometirc evaluation of the neonatal pain, agitation, and sedation (N-PASS) scale in infants and children up to age 36 months.
        Pediatric Nursing. 2017; 43: 175-185
        • Hummel P.
        • Lawlor-Klean P.
        • Weiss M.G.
        Validity and reliability of the N-PASS assessment tool with acute pain.
        Journal of Perinatology. 2010; 30: 474-478
        • Hummel P.
        • Puchalski M.
        • Creech S.D.
        • Weiss M.G.
        Clinical reliability and validity of the N-PASS: Neonatal pain, agitation and sedation scale with prolonged pain.
        Journal of Perinatology. 2008; 28: 55-60
        • Hunt A.
        • Goldman A.
        • Seers K.
        • Crichton N.
        • Mastroyannopoulou K.
        • Moffat V.
        • Brady M.
        Clinical validation of the paediatric pain profile.
        Developmental Medicine and Child Neurology. 2004; 46: 9-18
        • Husebo B.S.
        • Achterberg W.
        • Flo E.
        Identifying and managing pain in people with Alzheimer’s disease and other types of dementia: A systematic review.
        CNS Drugs. 2016; 30: 481-497
        • Husebo B.S.
        • Ostelo R.
        • Strand L.I.
        The MOBID-2 pain scale: Reliability and responsiveness to pain in patients with dementia.
        European Journal of Pain. 2014; 18: 1419-1430
        • Husebo B.S.
        • Strand L.I.
        • Moe-Nilssen R.
        • Husebo S.B.
        • Ljunggren A.E.
        Pain in older persons with severe dementia. Psychometric properties of the Mobilization-Observation-Behaviour-Intensity-Dementia (MOBID-2) pain scale in a clinical setting.
        Scandinavian Journal of Caring Sciences. 2010; 24: 380-391
        • International Association for the Study of Pain
        Declaration of Montreal. Declaration that Access to Pain Management Is a Fundamental Human Right.
        (Retrieved from)
        • International Association for the Study of Pain
        IASP Terminology.
        (Retrieved from)
        • Jansen B.W.
        • Brazil K.
        • Passmore P.
        • Buchanan H.
        • Maxwell D.
        • McIlfatrick S.J.
        • Parsons C.
        Exploring healthcare assistants’ role and experience in pain assessment and management for people with advanced dementia towards the end of life: A qualitative study.
        BMC Palliative Care. 2017; 16: 6
        • Joffe A.M.
        • McNulty B.
        • Boitor M.
        • Marsh R.
        • Gelinas C.
        Validation of the critical-care pain observation tool in brain-injured critically ill adults.
        Journal of Critical Care. 2016; 36: 76-80
        • Jordan A.
        • Regnard C.
        • O’Brien J.T.
        • Hughes J.C.
        Pain and distress in advanced dementia: Choosing the right tools for the job.
        Palliative Medicine. 2012; 26: 873-878
        • Kabes A.M.
        • Graves J.K.
        • Norris J.
        Further validation of the nonverbal pain scale in intensive care patients.
        Critical Care Nurse. 2009; 29: 59-66
        • Kanji S.
        • MacPhee H.
        • Singh A.
        • Johanson C.
        • Fairbairn J.
        • Lloyd T.
        • Rosenberg E.
        Validation of the critical care pain observation tool in critically ill patients with delirium: A prospective cohort study.
        Critical Care Medicine. 2016; 44: 943-947
        • Klein C.
        • Caumo W.
        • Gelinas C.
        • Patines V.
        • Pilger T.
        • Lopes A.
        • Vieira S.R.R.
        Validation of two pain assessment tools using a standardized nociceptive stimulation in critically ill adults.
        Journal of Pain Symptom Management. 2018; 56: 594-601
        • Klein D.
        • Dumpe M.
        • Katz E.
        • Bena J.
        Pain assessment in the intensive care unit: Development and psychometric testing of the nonverbal pain assessment tool.
        Heart & Lung. 2010; 39: 521-528
        • LaFond C.
        • Hanrahan K.
        • Pierce N.
        • Perkhounkova Y.
        • WWinberg E.
        • McCarthy A.
        Pain in the pediatric intensive care unit: How and what are we doing?.
        American Journal of Critical Care. 2019; 28: 265-273
        • Lautenbacher S.
        • Kunz M.
        Facial pain expression in dementia: A review of the experimental and clinical evidence.
        Current Alzheimer Research. 2017; 14: 501-505
        • Lawrence J.
        • Alcock D.
        • McGrath P.
        • Kay J.
        • MacMurray S.B.
        • Dulberg C.
        The development of a tool to assess neonatal pain.
        Neonatal Network: NN. 1993; 12: 59-66
        • Lefebvre-Chapiro S.
        The Doloplus 2 scale: Evaluating pain in the elderly.
        European Journal of Palliative Care. 2001; 8: 191-194
        • Lichtner V.
        • Dowding D.
        • Esterhuizen P.
        • Closs S.J.
        • Long A.F.
        • Corbett A.
        • Briggs M.
        Pain assessment for people with dementia: A systematic review of systematic reviews of pain assessment tools.
        BMC Geriatrics. 2014; 14: 138
        • Lints-Martindale A.C.
        • Hadjistavropoulos T.
        • Lix L.M.
        • Thorpe L.
        A comparative investigation of observational pain assessment tools for older adults with dementia.
        The Clinical Journal of Pain. 2012; 28: 226-237
        • Liu J.Y.
        • Lai C.K.
        Implementation of observational pain management protocol for residents with dementia: A cluster-RCT.
        Journal of the American Geriatrics Society. 2017; 65: e56-e63
        • Lotan M.
        • Ljunggren E.A.
        • Johnsen T.B.
        • Defrin R.
        • Pick C.G.
        • Strand L.I.
        A modified version of the non-communicating children pain checklist-revised, adapted to adults with intellectual and developmental disabilities: Sensitivity to pain and internal consistency.
        The Jounal of Pain. 2009; 10: 398-407
        • Lukas A.
        • Barber J.B.
        • Johnson P.
        • Gibson S.J.
        Observer-rated pain assessment instruments improve both the detection of pain and the evaluation of pain intensity in people with dementia.
        European Journal of Pain. 2013; 17: 1558-1568
        • Maaskant J.
        • Raymakers-Janssen P.
        • Veldhoen E.
        • Ista E.
        • Lucas C.
        • Vermeulen H.
        The clinimetric properties of the comfort scale: A systematic review.
        European Journal of Pain. 2016; 20: 1587-1611
        • Maitre N.L.
        • Key A.P.
        • Chorna O.D.
        • Slaughter J.C.
        • Matusz P.J.
        • Wallace M.T.
        • Murray M.M.
        The dual nature of early-life experience on somatosensory processing in the human infant brain.
        Current Biology. 2017; 27: 1048-1054
        • Malviya S.
        • Voepel-Lewis T.
        • Burke C.
        • Merkel S.
        • Tait A.R.
        The revised FLACC observational pain tool: Improved reliability and validity for pain assessment in children with cognitive impairment.
        Pediatric Anesthsia. 2006; 16: 258-265
        • Mamhidir A.-G.
        • Sjölund B.-M.
        • Fläckman B.
        • Wimo A.
        • Sköldunger A.
        • Engström M.
        Systematic pain assessment in nursing homes: A cluster-randomized trial using mixed-methods approach.
        BMC Geriatrics. 2017; 17: 61
        • McCaffery M.
        Nursing practice theories related to cognition, bodily pain, and man-environment interactions.
        UCLA Student’s Store, Los Angeles1968
        • McDowell B.C.
        • Duffy C.
        • Lundy C.
        Pain report and musculoskeletal impairment in young people with severe forms of cerebral palsy: A population-based series.
        Research in Developmental Disabilities. 2017; 60: 277-284
        • McGrath P.J.
        • Johnson G.I.
        • Goodman J.T.
        • Schillinger J.
        • Dunn J.
        • Chapman J.
        CHEOPS: A behavioral scale for rating postoperative pain in chidren.
        Raven Press, New York1985
        • McGuire D.B.
        • Kaiser K.S.
        • Haisfield-Wolfe M.E.
        • Iyamu F.
        Pain assessment in noncommunicative adult palliative care patients.
        Nursing Clinics of North America. 2016; 51: 397-431
        • McGuire D.B.
        • Reifsnyder J.
        • Soeken K.
        • Kaiser K.S.
        • Yeager K.A.
        Assessing pain in nonresponsive hospice patients: Development and preliminary testing of the multidimensional objective pain assessment tool (MOPAT).
        Journal of Palliative Medicine. 2011; 14: 287-292
        • Meir L.
        • Strand L.I.
        • Alice K.
        A model for pain behavior in individuals with intellectual and developmental disabilities.
        Research in Developmental Disabilities. 2012; 33: 1984-1989
        • Merkel S.I.
        • Voepel-Lewis T.
        • Shayevitz J.R.
        • Malviya S.
        The FLACC: A behavioral scale for scoring postoperative pain in young children.
        Pediatric Nursing. 1997; 23: 293-297
        • Mohand-Said S.
        • Richard-Lalonde M.
        • Boitor M.
        • Gélinas C.
        Family members’ experience with observing pain behaviors using the Critical-Care Pain Observation Tool.
        Pain Management Nursing. 2019;
        • National Association of Neonatal Nurses
        Palliative and End-of-Life Care for Newborns and Infants: Position Statement #3063.
        (Retrieved from)
        • Neville C.
        • Ostini R.
        A psychometric evaluation of three pain rating scales for people with moderate to severe dementia.
        Pain Management Nursing. 2014; 15: 798-806
        • Ngu S.S.
        • Tan M.P.
        • Subramanian P.
        • Rahman R.A.
        • Kamaruzzaman S.
        • Chin A.V.
        • Poi P.J.
        Pain assessment using self-reported, nurse-reported, and observational pain assessment tools among older individuals with cognitive impairment.
        Pain Management Nursing. 2015; 16: 595-601
        • Noreika D.
        • Bobb B.
        • Coyne P.
        Pain and symptoms.
        1 st ed. Oxford University Press, Oxford2015
        • Odhner M.
        • Wegman D.
        • Freeland N.
        • Steinmetz A.
        • Ingersoll G.L.
        Assessing pain control in nonverbal critically ill adults.
        Dimensions of Critical Care Nursing. 2003; 22: 260-267
        • Paice J.A.
        Pain at the end of life.
        4 th ed. Oxford University Press, New York2015
        • Paice J.A.
        • Coyne P.
        Justice in America: Ethical issues in cancer pain control.
        Journal of Hospice & Palliative Nursing. 2017; 19: 508-513
        • Pasero C.
        • McCaffery M.
        Pain assessment and pharmacological management.
        Mosby, St. Louis, MO2011
        • Payen J.F.
        • Bru O.
        • Bosson J.L.
        • Lagrasta A.
        • Novel E.
        • Deschaux I.
        • Jacquot C.
        Assessing pain in critically ill sedated patients by using a behavioral pain scale.
        Critical Care Medicine. 2001; 29: 2258-2263
        • Pickering G.
        • Gibson S.J.
        • Serbouti S.
        • Odetti P.
        • Ferraz Goncalves J.
        • Gambassi G.
        • Wary B.
        Reliability study in five languages of the translation of the pain behavioural scale Doloplus.
        European Journal of Pain. 2010; 14: 545.e1-545.e10
        • Plooij B.
        • Swaab D.
        • Scherder E.
        Autonomic responses to pain in aging and dementia.
        Reviews in the Neurosciences. 2011; 22: 583-589
        • Puntillo K.
        • Max A.
        • Timsit J.F.
        • Vignoud L.
        • Chanques G.
        • Robleda G.
        • Azoulay E.
        Determinants of procedural pain intensity in the intensive care unit. The Europain(R) study.
        American Journal of Respiratory and Critical Care Medicine. 2014; 189: 39-47
        • Puntillo K.
        • Morris A.B.
        • Thompson C.L.
        • Stanik-Hutt J.
        • White C.A.
        • Wild L.R.
        Pain behaviors observed during six common procedures: Results from Thunder Project II.
        Critical Care Medicine. 2004; 32: 421-427
        • Puntillo K.
        • Neuhaus J.
        • Arai S.
        • Paul S.
        • Gropper M.
        • Cohen N.
        • Miaskowski C.
        Challenge of assessing symptoms in seriously ill intensive care unit patients: Can proxy reporters help?.
        Critical Care Medicine. 2012; 40: 2760-2767
        • Quinn B.L.
        • Seibold E.
        • Hayman L.
        Pain assessment in children with special needs: A review of the literature.
        Exceptional Children. 2015; 82: 44-57
        • Quinn B.L.
        • Solodiuk J.C.
        • Morrill D.
        • Mauskar S.
        CE: Original research pain in nonverbal children with medical complexity a two-year retrospective study.
        AJN American Journal of Nursing. 2018; 118: 28-37
        • Rahu M.A.
        • Grap M.J.
        • Cohn J.F.
        • Munro C.L.
        • Lyon D.E.
        • Sessler C.N.
        Facial expression as an indicator of pain in critically ill intubated adults during endotracheal suctioning.
        American Journal of Critical Care. 2013; 22: 412-422
        • Relland L.M.
        • Gehred A.
        • Maitre N.L.
        Behavioral and physiological signs for pain assessment in preterm and term neonates during a nociception-specific response: A systematic review.
        Pediatric Neurology. 2019; 90: 13-23
        • Reuben D.
        • Herr K.
        • Pacala J.
        • Pollack B.
        • Potter J.
        • Semla T.
        Geriatrics at your fingertips.
        20 th ed. American Geriatrics Society, New York2019
        • Richard-Lalonde M.
        • Boitor M.
        • Mohand-Said S.
        • Gelinas C.
        Family members’ perceptions of pain behaviors and pain management of adult patients unable to self-report in the intensive care unit: A qualitative descriptive study.
        Canadian Journal of Pain. 2018; 2: 315-323
        • Roulin M.J.
        • Ramelet A.S.
        Behavioral changes in brain-injured critical care adults with different levels of consciousness during nociceptive stimulation: An observational study.
        Intensive Care Medicine. 2014; 40: 1115-1123
        • Ruest M.
        • Bourque M.
        • Laroche S.
        • Harvey M.P.
        • Martel M.
        • Bergeron-Vezina K.
        • Leonard G.
        Can we quickly and thoroughly assess pain with the PACSLAC-II? A convergent validity study in long-term care residents suffering from dementia.
        Pain Management Nursing. 2017; 18: 410-417
        • Sandvik R.K.
        • Selbaek G.
        • Seifert R.
        • Aarsland D.
        • Ballard C.
        • Corbett A.
        • Husebo B.S.
        Impact of a stepwise protocol for treating pain on pain intensity in nursing home patients with dementia: A cluster randomized trial.
        European Journal of Pain. 2014; 18: 1490-1500
        • Schofield P.
        The assessment of pain in older people: UK national guidelines.
        Age and Ageing. 2018; 47: i1-i22
        • Severgnini P.
        • Pelosi P.
        • Contino E.
        • Serafinelli E.
        • Novario R.
        • Chiaranda M.
        Accuracy of critical care pain observation tool and behavioral pain scale to assess pain in critically ill conscious and unconscious patients: Prospective, observational study.
        Journal of Intensive Care. 2016; 4: 68
        • Shogren K.A.
        • Turnbull H.R.
        Public policy and outcomes for persons with intellectual disability: Extending and expanding the public policy framework of AAIDD’s 11th edition of intellectual disability: Definition, classification, and systems of support.
        Intellectual Developmental Disabilities. 2010; 48: 375-386
        • Solodiuk J.
        • Curley M.A.
        Pain assessment in nonverbal children with severe cognitive impairments: The Individualized Numeric Rating Scale (INRS).
        Journal of Pediatric Nursing. 2003; 18: 295-299
        • Solodiuk J.
        • Scott-Sutherland J.
        • Meyers M.
        • Myette B.
        • Shusterman C.
        • Karian V.E.
        • Curley M.A.
        Validation of the individualized numeric rating scale (INRS): A pain assessment tool for nonverbal children with intellectual disability.
        Pain. 2010; 150: 231-236
        • Sparshott M.
        The development of a clinical distress scale for ventilated newborn infants: Identification of pain and distress based on validated behavioural scores.
        Journal of Neonatal Nursing. 1996; 2: 5-13
        • Stevens B.
        • Gibbins S.
        • Yamada J.
        • Dionne K.
        • Lee G.
        • Johnston C.
        • Taddio A.
        The premature infant pain profile-revised (PIPP-R): Initial validation and feasibility.
        The Clinical Journal of Pain. 2014; 30: 238-243
        • Stevens B.
        • Johnston C.
        • Petryshen P.
        • Taddio A.
        Premature infant pain profile: Development and initial validation.
        The Clinical Journal of Pain. 1996; 12: 13-22
        • Stevens B.
        • Johnston C.
        • Taddio A.
        • Gibbins S.
        • Yamada J.
        The premature infant pain profile: Evaluation 13 years after development.
        The Clinical Journal of Pain. 2010; 26: 813-830
        • Symons F.J.
        • Shinde S.K.
        • Gilles E.
        Perspectives on pain and intellectual disability.
        Journal of Intellectual Disability Research. 2008; 52: 275-286
        • Tarbell S.E.
        • Cohen I.T.
        • Marsh J.L.
        The Toddler-Preschooler Postoperative Pain Scale: An observational scale for measuring postoperative pain in children aged 1-5. Preliminary report.
        Pain. 1992; 50: 273-280
        • Topolovec-Vranic J.
        • Gelinas C.
        • Li Y.
        • Pollmann-Mudryj M.A.
        • Innis J.
        • McFarlan A.
        • Canzian S.
        Validation and evaluation of two observational pain assessment tools in a trauma and neurosurgical intensive care unit.
        Pain Research and Management. 2013; 18: e107-e114
        • van Dijk M.
        • de Boer J.B.
        • Koot H.M.
        • Tibboel D.
        • Passchier J.
        • Duivenvoorden H.J.
        The reliability and validity of the COMFORT scale as a postoperative pain instrument in 0 to 3-year-old infants.
        Pain. 2000; 84: 367-377
        • van Iersel T.
        • Timmerman D.
        • Mullie A.
        Introduction of a pain scale for palliative care patients with cognitive impairment.
        International Journal of Palliative Nursing. 2006; 12: 54-59
        • Vanderbyl B.L.
        • Gelinas C.
        Family perspectives of traumatically brain-injured patient pain behaviors in the intensive care unit.
        Pain Management Nursing. 2017; 18: 202-213
        • Voepel-Lewis T.
        • Malviya S.
        • Tait A.R.
        Validity of parent ratings as proxy measures of pain in children with cognitive impairment.
        Pain Management Nursing. 2005; 6: 168-174
        • Voepel-Lewis T.
        • Merkel S.
        • Tait A.R.
        • Trzcinka A.
        • Malviya S.
        The reliability and validity of the Face, Legs, Activity, Cry, Consolability Observational Tool as a measure of pain in children with cognitive impairment.
        Anesthesia & Analgesia. 2002; 95: 1224-1229
        • Voepel-Lewis T.
        • Zanotti J.
        • Dammeyer J.A.
        • Merkel S.
        Reliability and validity of the face, legs, activity, cry, consolability behavioral tool in assessing acute pain in critically ill patients.
        American Journal of Critical Care. 2010; 19: 55-61
        • von Baeyer C.L.
        • Chambers C.T.
        • Forsyth S.J.
        • Eisen S.
        • Parker J.A.
        Developmental data supporting simplification of self-report pain scales for preschool-age children.
        The Journal of Pain. 2013; 14: 1116-1121
        • von Baeyer C.L.
        • Jaaniste T.
        • Vo H.L.
        • Brunsdon G.
        • Lao H.-C.
        • Champion G.D.
        Systematic review of self-report measures of pain intensity in 3- and 4-year-old children: Bridging a period of rapid cognitive development.
        The Journal of Pain. 2017; 18: 1017-1026
        • Warden V.
        • Hurley A.C.
        • Volicer L.
        Development and psychometric evaluation of the pain assessment in advanced dementia (PAINAD) scale.
        Journal of the American Medical Directors Association. 2003; 4: 9-15
        • Wennström B.
        • Bergh I.
        Bodily and verbal expressions of postoperative symptoms in 3- to 6-year-old boys.
        Journal of Pediatric Nursing. 2008; 23: 65-76
        • Wiegand D.L.
        • Wilson T.
        • Pannullo D.
        • Russo M.M.
        • Kaiser K.S.
        • Soeken K.
        • McGuire D.B.
        Measuring acute pain over time in the critically ill using the Multidimensional Objective Pain Assessment Tool (MOPAT).
        Pain Management Nursing. 2018; 19: 277-287
        • Williams A.C.
        • Craig K.D.
        Updating the definition of pain.
        Pain. 2016; 157: 2420-2423
        • Willis M.H.
        • Merkel S.I.
        • Voepel-Lewis T.
        • Malviya S.
        FLACC behavioral pain assessment scale: A comparison with the child’s self-report.
        Pediatric Nursing. 2003; 29: 195-198
        • Wong D.L.
        • Baker C.M.
        Pain in children: Comparison of assessment scales.
        Pediatric Nursing. 1988; 14: 9-17
        • Young E.E.
        • D’Agata A.
        • Vittner D.
        • Baumbauer K.M.
        Neurobiological consequences of early painful experience: Basic science findings and implications for evidence-based practice.
        The Journal of Perinatal & Neonatal Nursing. 2017; 31: 178-185
        • Zwakhalen S.M.
        • van der Steen J.T.
        • Najim M.D.
        Which score most likely represents pain on the observational PAINAD pain scale for patients with dementia?.
        Journal of the American Medical Directors Association. 2012; 13: 384-389