{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,15]],"date-time":"2026-09-15T23:56:53Z","timestamp":1789516613409,"version":"build-2803163510"},"reference-count":73,"publisher":"MDPI AG","issue":"3","license":[{"start":{"date-parts":[[2023,1,22]],"date-time":"2023-01-22T00:00:00Z","timestamp":1674345600000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Diagnostics"],"abstract":"<jats:p>Pain assessment poses a challenge in several groups of clients, yet specific barriers arise when it comes to pain assessment of individuals with intellectual and developmental disabilities (IDD), due mostly to communication challenges preventing valid and reliable self-reports. Despite increased interest in pain assessment of those diagnosed with IDD within recent years, little is known about pain behavior in this group. The present article overviews the current state of pain diagnosis for individuals with IDD, focusing on existing pain assessment scales. In addition, it suggests technological developments offering new ways to diagnose existence of pain in this population, such as a Smartphone App for caregivers based on unique acoustic characteristics of pain-related vocal responses, or the use of smart wearable shirts that enable continuous surveillance of vital physiological signs. Such novel technological solutions may improve diagnosis of pain in the IDD population, as well as in other individuals with complex communication needs, to provide better pain treatment and enhance overall quality of life.<\/jats:p>","DOI":"10.3390\/diagnostics13030401","type":"journal-article","created":{"date-parts":[[2023,1,23]],"date-time":"2023-01-23T03:48:08Z","timestamp":1674445688000},"page":"401","update-policy":"https:\/\/doi.org\/10.3390\/mdpi_crossmark_policy","source":"Crossref","is-referenced-by-count":19,"title":["Diagnosing Pain in Individuals with Intellectual and Developmental Disabilities: Current State and Novel Technological Solutions"],"prefix":"10.3390","volume":"13","author":[{"given":"Meir","family":"Lotan","sequence":"first","affiliation":[{"name":"Department of Physical Therapy, Ariel University, Ariel 40700, Israel"},{"name":"Israeli Rett Syndrome Association, National Evaluation Team, National Rett Syndrome Clinic, Chaim Sheba Medical Center, Ramat-Gan 526200, Israel"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-9228-309X","authenticated-orcid":false,"given":"Michal","family":"Icht","sequence":"additional","affiliation":[{"name":"Department of Communication Disorders, Ariel University, Ariel 40700, Israel"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"1968","published-online":{"date-parts":[[2023,1,22]]},"reference":[{"key":"ref_1","doi-asserted-by":"crossref","first-page":"460","DOI":"10.1136\/adc.85.6.460","article-title":"Pain in cognitively impaired, non-communicating children","volume":"85","author":"Stallard","year":"2001","journal-title":"Arch. Dis. Child"},{"key":"ref_2","doi-asserted-by":"crossref","first-page":"405","DOI":"10.1093\/fampra\/17.5.405","article-title":"Health problems in people with intellectual disability in general practice: A comparative study","volume":"17","author":"Metsemakers","year":"2000","journal-title":"Fam. Pract."},{"key":"ref_3","unstructured":"International Association for the Study of Pain\u2014IASP (2022, October 01). IASP Pain Terminology. Available online: https:\/\/www.iasp-pain.org\/resources\/terminology\/."},{"key":"ref_4","unstructured":"International Association for the Study of Pain & Task Force on Taxonomy (1994). Classification of Chronic Pain: Descriptions of Chronic Pain Syndromes and Definitions of Pain Terms, IASP Press. [2nd ed.]."},{"key":"ref_5","doi-asserted-by":"crossref","first-page":"1","DOI":"10.1016\/j.pain.2004.09.002","article-title":"Pain relief: A universal human right","volume":"112","author":"Cousins","year":"2004","journal-title":"Pain"},{"key":"ref_6","doi-asserted-by":"crossref","first-page":"173","DOI":"10.12968\/ijpn.2003.9.4.11501","article-title":"Difficulties in identifying distress and its causes in people with severe communication problems","volume":"9","author":"Regnard","year":"2003","journal-title":"Int. J. Palliat. Nurs."},{"key":"ref_7","doi-asserted-by":"crossref","first-page":"139","DOI":"10.1111\/j.1754-4505.2003.tb00300.x","article-title":"Prevalence and predictors of untreated caries and oral pain among Special Olympic athletes","volume":"23","author":"Reid","year":"2003","journal-title":"Spec. Care Dent."},{"key":"ref_8","doi-asserted-by":"crossref","first-page":"1243","DOI":"10.1016\/S0003-9993(99)90023-0","article-title":"Pain in persons with cerebral palsy","volume":"80","author":"Schwartz","year":"1999","journal-title":"Arch. Phys. Med. Rehabil."},{"key":"ref_9","doi-asserted-by":"crossref","first-page":"1219","DOI":"10.1001\/archpedi.157.12.1219","article-title":"The incidence of pain in children with severe cognitive impairments","volume":"157","author":"Breau","year":"2003","journal-title":"Arch. Pediatr. Adolesc. Med."},{"key":"ref_10","doi-asserted-by":"crossref","first-page":"13","DOI":"10.1097\/00002508-199903000-00004","article-title":"Pain measurement in persons with intellectual disabilities","volume":"15","author":"LaChapelle","year":"1999","journal-title":"Clin. J. Pain"},{"key":"ref_11","doi-asserted-by":"crossref","first-page":"453","DOI":"10.1046\/j.1460-9592.2001.00686.x","article-title":"Pain management in children with and without cognitive impairment following spine fusion surgery","volume":"11","author":"Malviya","year":"2001","journal-title":"Paediatr. Anaesth."},{"key":"ref_12","doi-asserted-by":"crossref","first-page":"235","DOI":"10.1097\/00004703-199908000-00006","article-title":"Pain in children with significant neurological impairment","volume":"20","author":"Oberlander","year":"1999","journal-title":"J. Dev. Behav. Pediatr."},{"key":"ref_13","doi-asserted-by":"crossref","first-page":"364","DOI":"10.1017\/S001216220400060X","article-title":"Risk factors for pain in children with severe cognitive impairments","volume":"46","author":"Breau","year":"2004","journal-title":"Dev. Med. Child Neurol."},{"key":"ref_14","doi-asserted-by":"crossref","first-page":"140","DOI":"10.1100\/tsw.2006.27","article-title":"Pain in Down\u2019s syndrome","volume":"6","author":"Mafrica","year":"2006","journal-title":"Sci. World J."},{"key":"ref_15","doi-asserted-by":"crossref","first-page":"340","DOI":"10.1111\/j.1469-8749.1998.tb15386.x","article-title":"Behaviours caregivers use to determine pain in non-verbal, cognitively impaired individuals","volume":"40","author":"McGrath","year":"1998","journal-title":"Dev. Med. Child Neurol."},{"key":"ref_16","doi-asserted-by":"crossref","first-page":"413","DOI":"10.1007\/s10803-006-0176-0","article-title":"Physical illness, pain, and problem behavior in minimally verbal people with developmental disabilities","volume":"37","author":"Carr","year":"2007","journal-title":"J. Autism. Dev. Disord"},{"key":"ref_17","first-page":"43","article-title":"Head banging in early childhood","volume":"33","year":"1982","journal-title":"Child Dev."},{"key":"ref_18","doi-asserted-by":"crossref","first-page":"29","DOI":"10.53841\/bpscpf.1992.1.39.29","article-title":"\u201c\u2018I can\u2019t explain challenging behaviour\u2019\u2019: Towards a shared conceptual framework","volume":"39","author":"Clements","year":"1992","journal-title":"Clin. Psychol. Forum"},{"key":"ref_19","doi-asserted-by":"crossref","first-page":"124","DOI":"10.1352\/0047-6765(1997)035<0124:ROMCIT>2.0.CO;2","article-title":"Role of medical conditions in the exacerbation of self-injurious behavior: An exploratory study","volume":"35","author":"Bosch","year":"1997","journal-title":"Ment. Retard."},{"key":"ref_20","unstructured":"Bodfish, J.W., Harper, V.N., Deacon, J.R., and Symons, F.J. (2001). Identifying and Measuring Pain in Persons with Developmental Disabilities: A Manual for the Pain and Discomfort Scale Morganton, Western Carolina Center."},{"key":"ref_21","doi-asserted-by":"crossref","first-page":"75","DOI":"10.1111\/j.1360-2322.2004.00184.x","article-title":"Diagnostic Overshdowing amongst clinicians working with people with intellectual disabilities in the UK","volume":"17","author":"Mason","year":"2004","journal-title":"J. Appl. Res. Intellect. Disabil."},{"key":"ref_22","doi-asserted-by":"crossref","first-page":"449","DOI":"10.1046\/j.1365-2648.2002.02206.x","article-title":"Dealing with uncertainty: Parental assessment of pain in their children with profound special needs","volume":"38","author":"Carter","year":"2002","journal-title":"J. Adv. Nurs."},{"key":"ref_23","doi-asserted-by":"crossref","first-page":"458","DOI":"10.1046\/j.1365-2648.2002.02207.x","article-title":"Learning disability nurses\u2019 experiences of being with clients who may be in pain","volume":"38","author":"Donovan","year":"2002","journal-title":"J. Adv. Nurs."},{"key":"ref_24","doi-asserted-by":"crossref","first-page":"304","DOI":"10.1097\/00002508-199912000-00007","article-title":"Pain assessment and treatment in children with cognitive impairment: A survey of nurses\u2019 and physicians\u2019 beliefs","volume":"15","author":"Fanurik","year":"1999","journal-title":"Clin. J. Pain"},{"key":"ref_25","first-page":"138","article-title":"Beliefs about pain among professionals working with children with significant neurologic impairment","volume":"43","author":"Oberlander","year":"2001","journal-title":"Dev. Med. Child Neurol."},{"key":"ref_26","first-page":"149","article-title":"The development and evaluation of the pain indicator for communicately impaired children (PICIC)","volume":"1\u20132","author":"Stallard","year":"2002","journal-title":"Pain"},{"key":"ref_27","doi-asserted-by":"crossref","unstructured":"Ekman, P., and Friesen, W.V. (1978). Investigator\u2019s Guide to the Facial Action Coding System, Consulting Psychologists Press.","DOI":"10.1037\/t27734-000"},{"key":"ref_28","doi-asserted-by":"crossref","first-page":"442","DOI":"10.1037\/h0079934","article-title":"Judgement of pain in newborns: Facial activity and cry as determinants","volume":"20","author":"Craig","year":"1988","journal-title":"Can. J. Behav. Sci."},{"key":"ref_29","unstructured":"Turk, D.C., and Melzack, R. (1992). Handbook of Pain Assessment, Guilford."},{"key":"ref_30","doi-asserted-by":"crossref","first-page":"161","DOI":"10.1016\/0304-3959(91)90071-5","article-title":"Genuine, suppressed and faked facial behavior during exacerbation of chronic low back pain","volume":"46","author":"Craig","year":"1991","journal-title":"Pain"},{"key":"ref_31","doi-asserted-by":"crossref","first-page":"445","DOI":"10.1016\/S0095-5108(02)00022-2","article-title":"Challenges of judging pain in vulnerable infants","volume":"29","author":"Craig","year":"2002","journal-title":"Clin. Perinatol."},{"key":"ref_32","doi-asserted-by":"crossref","first-page":"253","DOI":"10.1016\/0304-3959(94)90206-2","article-title":"Encoding and decoding of pain expressions: A judgement study","volume":"58","author":"Prkachin","year":"1994","journal-title":"Pain"},{"key":"ref_33","first-page":"71","article-title":"Towards a research outcome measure of pain in frail elderly in chronic care","volume":"10","author":"Hadjistavropoulos","year":"1997","journal-title":"Pain Clin."},{"key":"ref_34","doi-asserted-by":"crossref","first-page":"369","DOI":"10.1002\/nur.4770150506","article-title":"Assessment of discomfort in advanced Alzheimer patients","volume":"15","author":"Hurley","year":"1992","journal-title":"Res. Nurs. Health"},{"key":"ref_35","unstructured":"Chambers, C.T., Cassidy, K.L., McGrath, P.J., Gilbert, C.A., and Craig, K.D. (1996). Child Facial Coding System: A Manual, University of British Columbia."},{"key":"ref_36","first-page":"51","article-title":"Facial expression of pain in children with intellectual disabilities following surgery","volume":"2","author":"Breau","year":"2009","journal-title":"J. Pain Manag."},{"key":"ref_37","doi-asserted-by":"crossref","first-page":"498","DOI":"10.1055\/s-0038-1634630","article-title":"Utilization of a neural network in the elaboration of an evaluation scale for pain in cerebral palsy","volume":"34","author":"Giusiano","year":"1995","journal-title":"Methods Inf. Med."},{"key":"ref_38","doi-asserted-by":"crossref","first-page":"27","DOI":"10.1007\/BF03003122","article-title":"Utilisation d\u2019une echelle d\u2019heteroevaluation de la douleur chez le sujet severement polyhandicape","volume":"10","author":"Collignon","year":"1997","journal-title":"Doul. Analg."},{"key":"ref_39","doi-asserted-by":"crossref","first-page":"433","DOI":"10.1053\/eujp.2001.0265","article-title":"Validation of a pain evaluation scale for patients with severe cerebral palsy","volume":"5","author":"Collignon","year":"2001","journal-title":"Eur. J. Pain"},{"key":"ref_40","first-page":"609","article-title":"Preliminary validation of an observational pain checklist for persons with cognitive impairments and inability to communicate verbally","volume":"42","author":"Breau","year":"2000","journal-title":"Dev. Med. Child Neurol."},{"key":"ref_41","doi-asserted-by":"crossref","first-page":"528","DOI":"10.1097\/00000542-200203000-00004","article-title":"Validation of the Non-communicating Children\u2019s Pain Checklist-Postoperative Version","volume":"96","author":"Breau","year":"2002","journal-title":"Anesthesiology"},{"key":"ref_42","doi-asserted-by":"crossref","first-page":"349","DOI":"10.1016\/S0304-3959(02)00179-3","article-title":"Psychometric properties of the non-communicating children\u2019s pain checklist-revised","volume":"99","author":"Breau","year":"2002","journal-title":"Pain"},{"key":"ref_43","first-page":"283","article-title":"Development and initial validation of the Batten\u2019s Observational Pain Scale: A preliminary study","volume":"3","author":"Breau","year":"2010","journal-title":"J. Pain Manag."},{"key":"ref_44","first-page":"37","article-title":"Pilot Study of the Feasibility of the Non-Communicating Children\u2019s Pain Checklist Revised for Pain Assessment for Adults with Intellectual Disabilities","volume":"2","author":"Burkitt","year":"2009","journal-title":"J. Pain Manag."},{"key":"ref_45","doi-asserted-by":"crossref","first-page":"9","DOI":"10.1111\/j.1469-8749.2004.tb00428.x","article-title":"Clinical validation of the paediatric pain profile","volume":"46","author":"Hunt","year":"2004","journal-title":"Dev. Med. Child Neurol."},{"key":"ref_46","doi-asserted-by":"crossref","first-page":"433","DOI":"10.1016\/j.ridd.2004.10.001","article-title":"The assessment of pain and discomfort in individuals with mental retardation","volume":"26","author":"Phan","year":"2005","journal-title":"Res. Dev. Disabil."},{"key":"ref_47","doi-asserted-by":"crossref","first-page":"312","DOI":"10.1016\/j.pain.2006.04.031","article-title":"The evaluation of acute pain in individuals with cognitive impairment: A differential effect of the level of impairment","volume":"124","author":"Defrin","year":"2006","journal-title":"Pain"},{"key":"ref_48","doi-asserted-by":"crossref","first-page":"398","DOI":"10.1016\/j.jpain.2008.09.006","article-title":"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","volume":"10","author":"Lotan","year":"2009","journal-title":"J. Pain"},{"key":"ref_49","doi-asserted-by":"crossref","first-page":"735","DOI":"10.1016\/j.ridd.2008.10.005","article-title":"Reliability of the Non-Communicating Adult Pain Checklist (NCAPC), assessed by different groups of health workers","volume":"30","author":"Lotan","year":"2009","journal-title":"Res. Dev. Disabil."},{"key":"ref_50","doi-asserted-by":"crossref","first-page":"367","DOI":"10.1016\/j.ridd.2009.10.008","article-title":"Measurement properties of the Non-communicating Adult Pain Checklist (NCAPC): A pain scale for adults with Intellectual and Developmental Disabilities, scored in a clinical setting","volume":"31","author":"Lotan","year":"2010","journal-title":"Res. Dev. Disabil."},{"key":"ref_51","doi-asserted-by":"crossref","first-page":"1984","DOI":"10.1016\/j.ridd.2012.05.028","article-title":"A model for pain behavior in individuals with intellectual and developmental disabilities","volume":"33","author":"Lotan","year":"2012","journal-title":"Res. Dev. Disabil."},{"key":"ref_52","doi-asserted-by":"crossref","first-page":"159","DOI":"10.1046\/j.1365-2702.1999.00241.x","article-title":"Pain in older adults living in sheltered accommodation\u2013agreement between assessments by older adults and staff","volume":"8","author":"Blomqvist","year":"1999","journal-title":"J. Clin. Nurs."},{"key":"ref_53","doi-asserted-by":"crossref","first-page":"1","DOI":"10.2307\/1131186","article-title":"Neonatal stress reactivity: Predictions to later emotional temperament","volume":"66","author":"Gunnar","year":"1995","journal-title":"Child Dev."},{"key":"ref_54","doi-asserted-by":"crossref","first-page":"591","DOI":"10.1037\/0278-6133.18.6.591","article-title":"Comparative study of distraction versus topical anesthesia for pediatric pain management during immunizations","volume":"18","author":"Cohen","year":"1999","journal-title":"Health Psychol."},{"key":"ref_55","doi-asserted-by":"crossref","unstructured":"Criner, G., Barnette, R., and D\u2019Alonzo, G. (2010). Critical Care Study Guide, Springer.","DOI":"10.1007\/978-0-387-77452-7"},{"key":"ref_56","doi-asserted-by":"crossref","first-page":"30","DOI":"10.1177\/147323000603400104","article-title":"Non-verbal communication method based on a biochemical marker for people with severe motor and intellectual disabilities","volume":"34","author":"Yamaguchi","year":"2006","journal-title":"J. Int. Med. Res."},{"key":"ref_57","doi-asserted-by":"crossref","first-page":"12","DOI":"10.1016\/j.pain.2009.10.001","article-title":"The effects of slow breathing on affective responses to pain stimuli: An experimental study","volume":"149","author":"Zautra","year":"2010","journal-title":"Pain"},{"key":"ref_58","doi-asserted-by":"crossref","first-page":"101","DOI":"10.1016\/0304-3959(94)90053-1","article-title":"Factors that influence the behavioral pain responses of premature infants","volume":"59","author":"Stevens","year":"1994","journal-title":"Pain"},{"key":"ref_59","doi-asserted-by":"crossref","first-page":"8","DOI":"10.1016\/S0897-1897(05)80036-9","article-title":"Acoustical analysis of maternal sounds during the second stage of labor","volume":"6","author":"Fuller","year":"1993","journal-title":"Appl. Nurs. Res."},{"key":"ref_60","doi-asserted-by":"crossref","first-page":"230","DOI":"10.1016\/j.pmn.2011.10.002","article-title":"Pain assessment in the patient unable to self\u2013report: Position statement with clinical practice recommendations","volume":"12","author":"Herr","year":"2011","journal-title":"Pain Manag. Nurs."},{"key":"ref_61","doi-asserted-by":"crossref","first-page":"54","DOI":"10.12968\/ijpn.2006.12.2.20531","article-title":"Introduction of a pain scale for palliative care patients with cognitive impairment","volume":"12","author":"Timmerman","year":"2006","journal-title":"Int. J. Palliat. Nurs."},{"key":"ref_62","doi-asserted-by":"crossref","first-page":"2926","DOI":"10.3389\/fpsyg.2021.655202","article-title":"Can the vocal expression of intellectually disabled individuals be used as a pain indicator? Initial findings supporting a possible novice assessment method","volume":"12","author":"Icht","year":"2021","journal-title":"Front. Psychol."},{"key":"ref_63","doi-asserted-by":"crossref","first-page":"17472","DOI":"10.3390\/s131217472","article-title":"Data mining for wearable sensors in health monitoring systems: A review of recent trends and challenges","volume":"13","author":"Banaee","year":"2013","journal-title":"Sensors"},{"key":"ref_64","first-page":"37","article-title":"Wearable technology design for autism spectrum disorders","volume":"31","author":"Koo","year":"2018","journal-title":"Arch. Des. Res."},{"key":"ref_65","doi-asserted-by":"crossref","unstructured":"Taj-Eldin, M., Ryan, C., O\u2019Flynn, B., and Galvin, P. (2018). A Review of Wearable Solutions for Physiological and Emotional Monitoring for Use by People with Autism Spectrum Disorder and Their Caregivers. Sensors, 18.","DOI":"10.3390\/s18124271"},{"key":"ref_66","first-page":"48","article-title":"The use of wearable technology to measure and support abilities, disabilities and functional skills in autistic youth: A scoping review","volume":"8","author":"Black","year":"2020","journal-title":"Scand. J. Child Adolesc. Psychiatry Psychol."},{"key":"ref_67","unstructured":"Simantiraki, O., Giannakakis, G., Pampouchidou, A., and Tsiknakis, M. (2016). Pervasive Computing Paradigms for Mental Health, Springer."},{"key":"ref_68","doi-asserted-by":"crossref","unstructured":"Chen, J., Abbod, M., and Shieh, J.S. (2021). Pain and stress detection using wearable sensors and devices\u2014A review. Sensors, 21.","DOI":"10.3390\/s21041030"},{"key":"ref_69","doi-asserted-by":"crossref","first-page":"125","DOI":"10.1111\/j.1365-2788.2006.00851.x","article-title":"Pain\u2019s impact on adaptive functioning","volume":"51","author":"Breau","year":"2007","journal-title":"J. Intellect. Disabil. Res."},{"key":"ref_70","doi-asserted-by":"crossref","first-page":"498","DOI":"10.1067\/mpd.2003.163","article-title":"Relation between pain and self-injurious behavior in nonverbal children with severe cognitive impairments","volume":"142","author":"Breau","year":"2003","journal-title":"J. Pediatr."},{"key":"ref_71","doi-asserted-by":"crossref","first-page":"165","DOI":"10.1136\/adc.2002.019158","article-title":"Patterns of admissions for children with special needs to the paediatric assessment unit","volume":"89","author":"Mahon","year":"2004","journal-title":"Arch Dis. Child"},{"key":"ref_72","doi-asserted-by":"crossref","first-page":"116","DOI":"10.1097\/00002508-199806000-00005","article-title":"Children\u2019s self-report of postoperative pain intensity and treatment threshold: Determining the adequacy of medication","volume":"14","author":"Gauthier","year":"1998","journal-title":"Clin. J. Pain"},{"key":"ref_73","first-page":"247","article-title":"A bio-ecological approach to pediatric pain assessment","volume":"1","author":"Breau","year":"2008","journal-title":"J. Pain Manag."}],"container-title":["Diagnostics"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/www.mdpi.com\/2075-4418\/13\/3\/401\/pdf","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,10,10]],"date-time":"2025-10-10T18:13:14Z","timestamp":1760119994000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.mdpi.com\/2075-4418\/13\/3\/401"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2023,1,22]]},"references-count":73,"journal-issue":{"issue":"3","published-online":{"date-parts":[[2023,2]]}},"alternative-id":["diagnostics13030401"],"URL":"https:\/\/doi.org\/10.3390\/diagnostics13030401","relation":{},"ISSN":["2075-4418"],"issn-type":[{"value":"2075-4418","type":"electronic"}],"subject":[],"published":{"date-parts":[[2023,1,22]]}}}