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Abstract

Obiettivo. Questo articolo fornisce una descrizione sintetica degli strumenti di valutazione del dolore acuto e cronico nei soggetti con sindrome di Down, indipendentemente dalla loro etí  e grado di deterioramento cognitivo.

Metodi. È stata realizzata una revisione narrativa della letteratura, ricercando tutti gli strumenti di valutazione del dolore nella popolazione con sindrome di Down, utilizzando database diversi, quali PubMed, CINAHL, Scopus, Web of Science (ISI) e Cochrane, senza limiti di tempo e pubblicati fino al mese di Ottobre 2017. Sono stati inclusi tutti gli strumenti validati applicabili ai soggetti con di sindrome di Down pubblicati sia in lingua inglese che italiana. Studi irrilevanti e non rispondenti alle query identificate, pubblicazioni di letteratura grigia, commenti e editoriali sono stati esclusi.

Risultati. Sono stati ottenuti sei strumenti di valutazione del dolore, basati sulle osservazioni degli operatori sanitari e dei caregivers, utili ad interpretare segni e comportamenti dei soggetti pediatrici (fino a 21 anni) non-self-report. Gli strumenti identificati sono stati: la Non-communicating Children's Pain Checklist–Revised (NCCPC-R), the Pediatric Pain Profile (PPP), la Revised Face, Legs, Activity, Cry and Consolability Scale (r–FLACC), la Individualized Numeric Rating Scale (INRS) e laCOMFORT–Behavior Scale (COMFORT–B). Tutti questi strumenti possono essere applicati a tutti i soggetti affetti da malattie cromosomiche. Solo la COMFORT-Behaviour Scale (COMFORT-B) potrebbe essere utilizzata nella popolazione pediatrica (0-3 anni) con sindrome di Down, sottoposti a ventilazione meccanica. Solo quattro dei sei strumenti ottenuti da questa revisione erano validati in italiano.

Conclusioni. Fino ad oggi gli studi di ricerca nazionale e internazionale non sono stati in grado di rispondere adeguatamente alle esigenze dei soggetti, con sindrome di Down, in quanto è difficile identificare quei comportamenti specifici per discriminare i soggetti con dolore rispetto a quelli che non hanno dolore. Probabilmente, oltre al bambino/adulto, il genitore o il caregiver potrebbero rappresentare una chiave di lettura necessaria per comprendere i cambiamenti idiosincratici dei comportamenti riconducibili alla presenza/assenza di dolore. Solo uno strumento di valutazione si è rivelato adatto alla popolazione pediatrica sottoposta a ventilazione meccanica con sindrome di Down. Ciò significa che vi è l'urgente necessití  di condurre ulteriori studi di in merito, per identificare strumenti validi e affidabili per garantire il sollievo dal dolore anche a questa fragile popolazione, sia pediatrica che adulta.

Parole chiave: Valutazione del dolore; Sindrome di Down; Trisomia 21; Dolore Cronico; Dolore Acuto, Italia

 

Pain assessment in Down Syndrome patients: a narrative review of the literature


Objective. The paper provides a description of available measurement tools which are able to adequately assess acute chronic pain in Down Syndrome (DS) patients, regardless of their age and cognitive impairment.

Methods. Papers referring to DS patients were sought using different databases, such as PubMed, CINAHL, Scopus, Web of Science (ISI) and Cochrane, with no limit of time and published up to October 2017. All validated tools applicable to DS patients were included in the search, which consisted of papers published both in English and Italian. Irrelevant studies not pertaining to this specific query, grey literature publications, Commentaries, Letters and Editorials were excluded.

Results. Six pain assessment tools were obtained, based on the observations of caregivers and healthcare's practitioners and on the interpretation of behavioral cues of patients unable to self-report. The identified tools were: the Non-communicating Children's Pain Checklist–Revised (NCCPC-R), the Pediatric Pain Profile (PPP), the Revised Face, Legs, Activity, Cry and Consolability Scale (r–FLACC), the Individualized Numeric Rating Scale (INRS) and the COMFORT–Behavior Scale (COMFORT–B), all applicable to patients affected by chromosomic diseases. The COMFORT–Behavior Scale (COMFORT–B) could be used only in DS infants (0-3 years) undergoing mechanic ventilation. Four of the six tools have also been validated in Italian.

Conclusions. To date national and international research studies have not been able to adequately respond to the needs of DS patients who are not be able to clearly express the level of pain they may be experiencing. Only one assessment tool turned out to be suitable for measuring pain intensity in the pediatric population undergoing mechanic ventilation. (COMORT-B), although this latter could not be used for assessing pain intensity in other DS populations. This means that there is the urgent need to carry out further validation studies so that a wider range of pain assessment tools may be used for people with Down's syndrome.

Keyword. Pain Assessment; Down Syndrome; Trisomy 21; Chronic Pain; Acute Pain, Italy

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Come citare
Latina, R., Di Maglie, V., Sili, A., D’Angelo, D., Marucci, A. R., Di Ettore, B., & Scozzo, L. (2019). Valutazione del dolore nei pazienti affetti da sindrome di Down: una revisione narrativa della letteratura. PROFESSIONI INFERMIERISTICHE, 71(4). Recuperato da https://www.profinf.net/pro3/index.php/IN/article/view/567
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Riferimenti

  • Abu-Saad, H.H.(2000) Challenge of pain in the cognitively impaired. Lancet, 356, 1867–1868.
  • Benini, F., & Trapanotto, M. (2004) Evaluating pain induced by venipuncture in pediatric patients with developmental delay. Clinical Journal of Pain, 20(3), 156–163.
  • Bertoli, M., Biasini, G., Calignano, M.T., Celani, G., De Grossi, G., Digilio, M.C., Fermariello, C.C., Loffredo, G., Luchino, F., Marchese, A., Mazotti, S., Manghi, B., Razzano, C., Tiano, C., Zambon Hobart, A., Zampino, G., & Zuccalí , G. (2011) Needs and challenges of daily life for people with Down syndrome residing in the city of Rome, Italy. Journal of Intellectual Disability Research, 55(8), 801–820.
  • Breau, L.M., Camfield, C., McGrath, P.J., & Finley, G.A. (2004) Risk factors for pain in children with severe cognitive impairments. Developmental Medicine and Child Neurology, 46, 364–71.
  • Breau, L.M., Finley, G.A., McGrath, P.J., & Camfield, C.S. (2002a) Validation of the non-communicating children's pain checklist-postoperative version. Anesthesiology, 96, 528–535.
  • Breau, L.M., McGrath, P.J., Camfield, C.S., & Finley, G.A. (2002b) Psychometric properties of the non-communicating children's pain checklist-revised. Pain, 99, 349–357.
  • Breau, L.M., & Burkitt, C. (2009) Assessing pain in children with intellectual disabilities. Pain Research and Management, 14, 116–20.
  • Centers for Disease Control and Prevention. (2011) Facts about Down sindrome. Data accesso 05.06.2017, da http://www.cdc.gov/ncbddd/birthdefects/DownSyndrome.html.
  • Centro Studi Investimenti Sociali (Censis). (2014) Diario della transizione. Data accesso 05.06.2017, da http://www.censis.it/7?shadow_comunicato_stampa=120959.
  • Chen-Lim, M.L., Zarnowsky, C., Green, R. Shaffer, S., Holtzer, B., & Ely, E. (2012) Optimizing the assessment of pain in children who are cognitively impaired through the quality improvement process. Journal of Pediatric Nursing, 27, 750–759.
  • Chen, Y.J., & Fang, P. C. (2005). Sensory evoked potentials in infants with down syndrome. Acta Paediatrica, 94, 1615–1618.
  • Chibnall, J.T., & Tait, R.C. (2001) Pain assessment in cognitively impaired and unimpaired older adults: a comparison of four scales. Pain, 92, 173–186.
  • Cordero, A.M.J., Mur Villar, N., & Garcí­a Garcí­a, I. (2015) Evaluation of pain in healthy newborns and in newborns with developmental problems (down syndrome). Pain Management. Nursing, 16, 267–272.
  • Crosta, Q.R., Ward T.M., Walker A.J., & Peters L.M. (2014) A review of pain measures for hospitalized children with cognitive impairment. Journal Specialist in Pediatric Nursing, 19 (2), 109-18.
  • De Grouchy, J., & Turleau, C. (1982) Atlas des maladies chromosomique. Paris: 2e e d. Expansion Scientifique .
  • Debord, J. Dental issues and Down syndrome. (2013) The National Down Syndrome Society. Data accesso 06.06.2017, da http://www.ndss.org/en/Healthcare /Associated-Conditions/Dental-Issues-and-Down-Syndrome.
  • Defrin, R., Pick, C.G., & Petretz, C. (2004) A quantitative somatosensory testing of pain threshold in individuals with mental retardation. Pain, 108(1–2), 58–66.
  • Defrin, R., Lotan, M, & Pick C.G. (2006) The evaluation of acute pain in individuals with cognitive impairment: a differential effect of the level of impairment. Pain, 124, 312–20.
  • Di Bari, A., Destrebecq, A., Osnaghi, F., & Terzoni, S. (2013). Traduzione e validazione in italiano della scala Revised FLACC per la valutazione del dolore nel bambino con grave ritardo mentale. Pain Nursing Magazine, 2(4), 164-168.
  • Down's Syndrome Association. (2006) Medical Series. 6. Eye problem in children with Down's Syndrome. Data accesso 01/05/2017, da http://archive.dsmig.org.uk/ library/articles/dsa-medical-series-6.pdf.
  • Dubois, A., Capdevila, X., Bringuier, S., & Pry, R. (2010) Pain expression in children with an intellectual disability. European Journal of Pain, 14, 654–660.
  • Esbensen, A.J. (2016) Sleep problems and associated comorbidities among adults with Down syndrome. Journal of Intellectual Disability Research, 60(1), 68–79.
  • Fanurik, D., Koh, J.L., Schmitz. M.L. Harrison, R.D., & Conrad.,T.M. (1999) Children with cognitive impairment: parent report of pain and coping. Journal of Developmental and Behavioral Pediatric, 20, 228–234.
  • Ferenczi, C., Neill, C.A., Baughman, J.A., Rubin, J.D., Brenner, J.I., & Perry, L.W. (1989) Congenital cardiovascular malformations associated with chromosome abnormalities: An epidemiologic study. The Journal of Pediatric, 114, 79–86.
  • Freeman, S.B., Torfs, C.P., Romitti, P.A., Royle , M.H., Druschel, C., Hobbs, C.A., & Sherman, S.L. (2009) Congenital gastrointestinal defects in Down syndrome: a report from the Atlanta and national Down syndrome projects. Clinical Genetics, 75, 180–184.
  • Gruppo LGSD. (2007) Linee guida Malattie rare; Linee Guida Multidisciplinari per l'Assistenza Integrata alle Persone con Sindrome di Down e alle loro Famiglie. Istituto Superiore di Sanití . Data accesso 28.12.2016, da www.iss.it/binary/lgmr2/cont/01.1234174825.pdf.
  • Heath, M., Grierson, L., Binsted, G., & Elliott, D. (2007) Interhemispheric transmission time in persons with down syndrome. Journal of Intellectual Disability Research, 51, 972–981.
  • Hennequin, M., Morin, C., & Feine, J.F. (2000). Pain expression and stimulus localisation in individuals with Down's syndrome. The Lancet, 356 (2), 1882-1887.
  • Hennequin, M., Faulks, D., & Allison, P. J. (2003) Parents' ability to perceive pain experienced by their child with down syndrome. Journal of Orofacial Pain, 17, 347–353.
  • Herr, K., Coyne, P.J., McCaffery, M., Manworren, R., & Merkel, S. (2011). Pain assessment in the patient unable to self-report: position statement with clinical practice recommendations. Pain Management Nursing, 12(4), 230-250.
  • Hunt, A., Goldman, A., Seers, K., Crichton, N., Mastroyannopoulou, K., Moffat, V., Oulton. K., & Brady, M. (2004) Clinical validation of the paediatric pain profile. Development Medicine & Child Neurology , 46(1), 9-18.
  • Hunt, K.A., & Franck, L.S. (2011) Special needs require special attention: A pilot project implementing the paediatric pain profile for children with profound neurological impairment in an in-patient setting following surgery. Journal of Child Health Care, 15, 210–220.
  • International Pain Summit Of The International Association For The Study Of Pain (IASP). (2011) Declaration of Montréal: declaration that access to pain management is a fundamental human right. Journal of Pain Palliative Care Pharmacotherapy, 25(1), 29-31.
  • Johansson, M., Carlberg, E. B., & Jylli, L. (2010) Validity and reliability of a Swedish version of the non-communicating children's pain checklist-postoperative version. Acta Paediatrica, 99, 929–933.
  • Kubota, Y., Uryu, K., Kawai, T., Ito T., Hanada I., & Toki T. (2016) Gene Expression Profiles and Methylation Analysis in Down Syndrome Related Acute Lymphoblastic Leukemia. Blood, 128:4084
  • Latina, R., Sansoni, J., D'Angelo, D., Di Biagio, E., De Marinis, MG., & Tarsitani G. (2013) La Prevalenza del Dolore Cronico Non Oncologico nell'Adulto e Patologie Associate: una revisione narrativa della letteratura. Professioni Infermieristiche, 66 (3), 151-158.
  • Leuter, C., Piroli, A., Paladini, A., Tudini, M., & Varrassi, G. (2017) Care strategies and therapeutic pathways for chronic pain patients in Abruzzo Region, Italy. Annali di Igiene, 29(1), 63-72.
  • Loane, M., Morris, J.K., Addor, M.C., Arriola, L. Doray, B., Garne, E., & Gatt, M., (2013) Twenty-year trends in the prevalence of Down syndrome and other trisomies in Europe: Impact of maternal age and prenatal screening. European Journal of Human Genetics, 21, 27–33
  • Lujić, L., Bosnjak, V.M., Delin, S., Duranovic, V., & Krakar, G. (2011) Infantile spasms in children with Down syndrome. Collegium Antropologicum, 35, 213–218
  • Malviya, S., Voepel-Lewis, T., Burke, C., Merkel, S., & Tait, A. R. (2006) The revised FLACC observational pain tool: improved reliability and validity for pain assessment in children with cognitive impairment. Paediatric Anaesthesia, 16 (3), 258-65
  • Manickam, V., Shott, G.S., Heithaus, D., & Shott, S.R., (2016) Hearing loss in Down Syndrome revisited – 15 years later. International Journal of Pediatric Otorhinolaryngolog, 88: 203-207.
  • Martí­neza, E., Castañeda, D., Jaramillo, S., Iregui, A., Quinonez, T., Rodriguez, J. A., Herrera, E., Gomes, A.M., Rondon, M.A., Prieto, J.C., Angel, J., Franco, M., & Mesa, M. C. (2016) Altered immune parameters correlate with infection-related hospitalizations in children with Down syndrome. Human Immunology, 77(7): 594–599.
  • McGuire, B.E., Daly, P., & Smyth, F. (2010) Chronic pain among people with an intellectual disability: under-recognised and under-treated?. Journal of Intellectual Disability Research, 54, 240–245.
  • McGuire, B. E., & Kennedy, S. (2013). Pain in people with an intellectual disability. Current Opinion in Psychiatry, 26, 270–275.
  • National Down Syndrome Society. Aging and Down Syndrome. (2013) Data accesso 01.12.2017, dahttps://www.ndss.org/PageFiles/2594/Aging%20and%20Down%20Syndrome%20A%20Health%20and%20Well-Being%20Guidebook.pdf.
  • National Library of Medicine, National Institutes of Health. Genetics Home Reference; Down syndrome. (2012). Data accesso 22.04.2017, da http://ghr. nlm.nih.gov/condition/down-syndrome.
  • Pasero, C., & McCaffery, M. (2011) Pain assessment and pharmacologic management. St. Louis: Mosby.
  • Pasin, S., Avila, F., de Cavata, T., Hunt, A., & Heldt, E. (2012) Cross cultural translation and adaptation to Brazalian Portuguese version of the paediatric pain profile in children with severe cerebral palsy. Journal of Pain & Symptom Management, 45, 120–128.
  • Robertson, J., Emerson, E., Gregory, N., Hatton, C., Tuirner, S., Kessissoglou, S., & Hallam, A., (2000) Lifestyle related risk factors for poor health in residential settings for people with intellectual disabilities. Research in Developmental Disabilities, 21, 469–486.
  • Schupf, N. (2002) Genetic and host factors for dementia in Down's syndrome. British Journal of Psychiatry, 180:405-10.
  • Sharr, C., Lavigne J., Elsharkawi, I.M.A., Ozonoff, A., Baumer, N., Brasington, C., Cannon, S., (2016) Detecting celiac disease in patients with Down syndrome. American Journal of Medical Genetics, 170(12): 3098–3105.
  • Solodiuk, J.C., Scott-Sutherland, J., Meyers, M., Myette, B., Shursterman, C., Karian, V.E., Harris, S.K., & Curley, M.A.Q. (2010) Validation of the Individualized Numeric Rating Scale (INRS): a pain assessment tool for nonverbal children with intellectual disability. Pain, 150(2):231-6.
  • Tenenbaum, A., Malkiel, S., Wexler, I.D. Levy-Khademi,F., Revel-Vilk, S., & Stepensky, P. (2011) Anemia in Children with Down Syndrome. International Journal of Pediatrics, 2011: 813541.
  • Terstegen, C.M., Koot, H.M., de Boer, J.B., & Tibboel, D. (2003) Measuring pain in children with cognitive impairment: pain response to surgical procedures. Pain, 103: 187–98
  • Terstegen, C.M. (2004) Assessing pain in children with profound cognitive impairment: the development of the checklist pain behavior. Rotterdam. Doctoral thesis. Data acceso 07.11.2017 da https://www.narcis.nl/publication/RecordID /oai:repub.eur.nl:7272.
  • Valkenburg, A.J., Boerlage, A.A., Ista, E., Duivenvoorden, H.J., Tibboel, D., & Van Dijk, M. (2011) The COMFORT-behavior scale is useful to assess pain and distress in 0- to 3-year old children with down's syndrome. Pain, 152: 2059–2064.
  • Weijerman, M.E., & de Winter, J.P. (2010) Clinical practice. the care of children with Down syndrome. European Journal of Pediatric, 169: 1445–52.
  • Whaley, W.J., & Gray, W.D. (1980) Atlantoaxial dislocation and Down's syndrome. Canadian Medical Association, 123(1): 35–37.
  • Winders, P.C. (2012) Gross motor development and Down syndrome. Data accesso 08.02.2017 da http://www.ndss.org/en/Education-Development--Community-Life/Therapies--Development/Physical--Occupational-Therapy/#gross.
  • Zabalia, M., Breau, L. M., Leveque, C., Hennequin, M., Villeneuve, E., Fall, E., & Breau, G. (2011) Validation of the French version of the non-communicating children's pain checklist-postoperative version. Canadian Journal of Anaesthesia, 58: 1016–1023.
  • Zanchi, C. , Massaro, M., Ferrara, G., Montico, M., D'Osualdo, F., Rutigliano R., Taddio, A., Vecchi Brumatti, L., Cozzi, G., & Barbi, E. (2017). Validation of the Italian version of the NonCommunicating Children's Pain ChecklistPostoperative Version. Italian Journal of Pediatrics, 43:75.