Advertisement
Original Article| Volume 60, ISSUE 6, P1079-1091, December 2020

Download started.

Ok

Pain Experience, Physical Function, Pain Coping, and Catastrophizing in Children With Sickle Cell Disease Who Had Normal and Abnormal Sensory Patterns

      Abstract

      Context

      Sickle cell disease (SCD) is associated with recurrent pain that could lead to abnormal sensory patterns (ASPs).

      Objectives

      The purpose of this study is to compare children with SCD who had normal sensory patterns (NSPs) and ASPs in pain experience, physical function, pain coping, and pain catastrophizing.

      Methods

      Children with quantitative sensory testing data were selected from a larger study that examined pain and symptoms in children with SCD. Comparisons were made between children with NSP (n = 35; 13.9 ± 1.9 years) and ASP (n = 13; 12.8 ± 1.9 years). Children completed the Adolescent Pediatric Pain Tool, Functional Disability Inventory, Pain Coping Questionnaire, and Pain Catastrophizing Scale.

      Results

      No significant differences were found in pain intensity (2.9 ± 3.0 vs. 2.6 ± 2.8 on 0–10 Visual Analogue Scale) between the NSP and ASP, respectively. The most common marked pain sites for both groups were lower extremities (22.9%), head and neck (20.8%), and upper extremities (20.8%). Functional Disability Inventory scores were significantly worse in ASP (38.5%) compared with NSP (11.4%). The ASP group had significantly worse scores in emotion-focused pain coping subscales.

      Conclusion

      Children with SCD with ASP had worse functional disability, were expressing more affective pain quality, and had emotion-focused pain coping compared with NSP. Future studies are needed to examine the effectiveness of physical activities on the physical function as well as psychosocial interventions such as peer support and creative arts expression to minimize development of ASP in children with SCD.

      Key Words

      To read this article in full you will need to make a payment

      Purchase one-time access:

      Academic & Personal: 24 hour online accessCorporate R&D Professionals: 24 hour online access
      One-time access price info
      • For academic or personal research use, select 'Academic and Personal'
      • For corporate R&D use, select 'Corporate R&D Professionals'

      Subscribe:

      Subscribe to Journal of Pain and Symptom Management
      Already a print subscriber? Claim online access
      Already an online subscriber? Sign in
      Institutional Access: Sign in to ScienceDirect

      References

        • Ware R.E.
        • de Montalembert M.
        • Tshilolo L.
        • Abboud M.R.
        Sickle cell disease.
        Lancet. 2017; 390: 311-323
        • Kato G.J.
        • Piel F.B.
        • Reid C.D.
        • et al.
        Sickle cell disease.
        Nat Rev Dis Primers. 2018; 4: 1-22
        • Piel F.B.
        • Hay S.I.
        • Gupta S.
        • Weatherall D.J.
        • Williams T.N.
        Global burden of sickle cell anaemia in children under five, 2010-2050: modelling based on demographics, excess mortality, and interventions.
        PLoS Med. 2013; 10: e1001484
        • Lubeck D.
        • Agodoa I.
        • Bhakta N.
        • et al.
        Estimated life expectancy and income of patients with sickle cell disease compared with those without sickle cell disease.
        JAMA. 2019; 2: e1915374
        • Graves J.K.
        • Hodge C.
        • Jacob E.
        Depression, anxiety, and quality of life in children and adolescents with sickle cell disease.
        Pediatr Nurs. 2016; 42 (144): 113-119
        • Polanczyk G.
        • de Lima G.S.
        • Horta B.L.
        The worldwide prevalence of ADHD: a systematic review and metaregression analysis.
        Am J Psychiatry. 2007; 164: 942-948
        • Han J.
        • Zhou J.
        • Saraf S.L.
        • Gordeuk V.R.
        • Calip G.S.
        Characterization of opioid use in sickle cell disease.
        Pharmacoepidemiol Drug Saf. 2018; 27: 479-486
        • Aljuburi G.
        • Laverty A.A.
        • Green S.A.
        • et al.
        Trends in hospital admissions for sickle cell disease in England, 2001/02-2009/10.
        J Public Health (Oxf). 2012; 34: 570-576
        • Anie K.A.
        • Green J.
        Psychological therapies for sickle cell disease and pain.
        Cochrane Database Syst Rev. 2015; 2015: CD001916
        • Ballas S.K.
        Update on pain management in sickle cell disease.
        Hemoglobin. 2011; 35: 520-529
        • Eltzschig H.K.
        • Eckle T.
        Ischemia and reperfusion—from mechanism to translation.
        Nat Med. 2011; 17: 1391-1401
        • Yawn B.P.
        • Buchanan G.R.
        • Afenyi-Annan A.N.
        • et al.
        Management of sickle cell disease: summary of the 2014 evidence-based report by expert panel members.
        JAMA. 2014; 312: 1033-1048
        • Cataldo G.
        • Rajput S.
        • Gupta K.
        • Simone D.A.
        Sensitization of nociceptive spinal neurons contributes to pain in a transgenic model of sickle cell disease.
        Pain. 2015; 156: 722-730
        • Cataldo G.
        • Rajput S.
        • Gupta K.
        • Simone D.A.
        Sensitization of nociceptive spinal neurons contributes to pain in a transgenic model of sickle cell disease.
        Pain. 2015; 156: 722-730
        • Driscoll M.
        Sickle cell disease.
        Pediatr Rev. 2007; 28: 259-268
        • O'Hara E.
        • Zempsky W.
        • Santanelli J.
        • Palermo T.
        Perception versus ability: physical function in pediatric sickle cell disease.
        J Pain. 2013; 14: S4
        • Omwanghe O.A.
        • Muntz D.S.
        • Kwon S.
        • et al.
        Self-reported physical activity and exercise patterns in children with sickle cell disease.
        Pediatr Exerc Sci. 2017; 29: 388-395
        • Brandow A.M.
        • Hansen K.
        • Nugent M.
        • et al.
        Children and adolescents with sickle cell disease have worse cold and mechanical hypersensitivity during acute painful events.
        Pain. 2019; 160: 407-416
        • Brandow A.M.
        • Panepinto J.A.
        Clinical interpretation of quantitative sensory testing as a measure of pain sensitivity in patients with sickle cell disease.
        J Pediatr Hematol Oncol. 2016; 38: 288-293
        • Hollins M.
        • Stonerock G.L.
        • Kisaalita N.R.
        • et al.
        Detecting the emergence of chronic pain in sickle cell disease.
        J Pain Symptom Manage. 2012; 43: 1082-1093
        • Jacob E.
        • Chan V.W.
        • Hodge C.
        • et al.
        Sensory and thermal quantitative testing in children with sickle cell disease.
        J Pediatr Hematol Oncol. 2015; 37: 185-189
        • O'Leary J.D.
        • Crawford M.W.
        • Odame I.
        • Shorten G.D.
        • McGrath P.A.
        Thermal pain and sensory processing in children with sickle cell disease.
        Clin J Pain. 2014; 30: 244-250
        • Brandow A.M.
        • Stucky C.L.
        • Hillery C.A.
        • Hoffmann R.G.
        • Panepinto J.A.
        Patients with sickle cell disease have increased sensitivity to cold and heat.
        Am J Hematol. 2013; 88: 37-43
        • Brandow A.M.
        • Farley R.A.
        • Dasgupta M.
        • Hoffman R.G.
        • Panepinto J.A.
        The use of neuropathic pain drugs in children with sickle cell disease is associated with older age, female gender and longer length of hospital stay.
        J Pediatr Hematol Oncol. 2015; 37: 10-15
        • Oliver-Carpenter G.
        • Barach L.
        • Crosby L.E.
        • Valenzuela J.
        • Mitchell M.J.
        Disease management, coping, and functional disability in pediatric sickle cell disease.
        J Natl Med Assoc. 2011; 103: 131-137
        • Sil S.
        • Cohen L.L.
        • Dampier C.
        Pediatric pain screening identifies youth at risk of chronic pain in sickle cell disease.
        Pediatr Blood Cancer. 2019; 66: e27538
        • Dobson C.
        Outcome results of self-efficacy in children with sickle disease pain who were trained to use guided imagery.
        Appl Nurs Res. 2015; 28: 384-390
        • Gardner K.
        • Douiri A.
        • Drasar E.
        • et al.
        Survival in adults with sickle cell disease in a high-income setting.
        Blood. 2016; 128: 1436-1438
        • Quinn C.T.
        • Rogers Z.R.
        • McCavit T.L.
        • Buchanan G.R.
        Improved survival of children and adolescents with sickle cell disease.
        Blood. 2010; 115: 3447-3452
        • Sethna N.F.
        • Meier P.M.
        • Zurakowski D.
        • Berde C.B.
        Cutaneous sensory abnormalities in children and adolescents with complex regional pain syndromes.
        Pain. 2007; 131: 153-161
        • Meier P.
        • Berde C.
        • DiCanzio J.
        • et al.
        Quantitative assessment of cutaneous thermal and vibration sensation and thermal pain detection thresholds in healthy children and adolescents.
        Muscle Nerve. 2001; 24: 1339-1345
        • Jacob E.
        • Duran J.
        • Stinson J.
        • Lewis M.A.
        • Zeltzer L.
        Remote monitoring of pain and symptoms using wireless technology in children and adolescents with sickle cell disease.
        J Am Acad Nurse Pract. 2013; 25: 42-54
        • Jacob E.
        • Mack A.K.
        • Savedra M.
        • Van Cleve L.
        • Wilkie D.J.
        Adolescent pediatric pain tool for multidimensional measurement of pain in children and adolescents.
        Pain Manag Nurs. 2014; 15: 694-706
        • Walker L.S.
        • Greene J.W.
        The functional disability inventory: measuring a neglected dimension of child health status.
        J Pediatr Psychol. 1991; 16: 39-58
        • Claar R.L.
        • Walker L.S.
        Functional assessment of pediatric pain patients: psychometric properties of the Functional Disability Inventory.
        Pain. 2006; 121: 77-84
        • Kashikar-Zuck S.
        • Flowers S.R.
        • Claar R.L.
        • et al.
        Clinical utility and validity of the Functional Disability Inventory among a multicenter sample of youth with chronic pain.
        Pain. 2011; 152: 1600-1607
        • Crombez G.
        • Bijttebier P.
        • Eccleston C.
        • et al.
        The child version of the pain catastrophizing scale (PCS-C): a preliminary validation.
        Pain. 2003; 104: 639-646
        • Pielech M.
        • Ryan M.
        • Logan D.
        • et al.
        Pain catastrophizing in children with chronic pain and their parents: proposed clinical reference points and reexamination of the PCS measure.
        Pain. 2014; 155: 2360-2367
        • Sullivan M.J.L.
        • Bishop S.R.
        • Pivik J.
        The pain catastrophizing scale: development and validation.
        Psychol Assess. 1995; 7: 524-532
        • Reid G.J.
        • Gilbert C.A.
        • McGrath P.J.
        The pain coping questionnaire: preliminary validation.
        Pain. 1998; 76: 83-96
        • Thastum M.
        • Herlin T.
        • Zachariae R.
        Relationship of pain-coping strategies and pain-specific beliefs to pain experience in children with juvenile idiopathic arthritis.
        Arthritis Care Res. 2005; 53: 178-184
        • Darbari D.S.
        • Vaughan K.J.
        • Roskom K.
        • et al.
        Central sensitization associated with low fetal hemoglobin levels in adults with sickle cell anemia.
        Scand J Pain. 2017; 17: 279-286
        • Carroll C.P.
        • Lanzkron S.
        • Haywood C.
        • et al.
        Chronic opioid therapy and central sensitization in sickle cell disease.
        Am J Prev Med. 2016; 51: S69-S77
        • Graves J.K.
        • Jacob E.
        Pain, coping, and sleep in children and adolescents with sickle cell disease.
        J Child Adolesc Psychiatr Nurs. 2014; 27: 109-120
        • Piel F.B.
        • Steinberg M.H.
        • Rees D.C.
        Sickle cell disease.
        N Engl J Med. 2017; 376: 1561-1573
        • Lemanek K.L.
        • Ranalli M.
        • Lukens C.
        A randomized controlled trial of massage therapy in children with sickle cell disease.
        J Pediatr Psychol. 2009; 34: 1091-1096
        • Williams H.
        • Tanabe P.
        Sickle cell disease: a review of nonpharmacological approaches for pain.
        J Pain Symptom Manage. 2016; 51: 163-177
        • Kazak A.
        • Ozkaraman A.
        The effect of progressive muscle relaxation exercises on pain on patients with sickle cell disease: randomized controlled study.
        Pain Manag Nurs. 2020; https://doi.org/10.1016/j.pmn.2020.02.069
        • Eijlers R.
        • Utens E.M.J.W.
        • Staals L.M.
        • et al.
        Systematic review and meta-analysis of virtual reality in pediatrics: effects on pain and anxiety.
        Anesth Analg. 2019; 129: 1344-1353
        • Agrawal A.K.
        • Robertson S.
        • Litwin L.
        • et al.
        Virtual reality as complementary pain therapy in hospitalized patients with sickle cell disease.
        Pediatr Blood Cancer. 2019; 66: e27525
        • Co L.L.
        • Schmitz T.H.
        • Havdala H.
        • Reyes A.
        • Westerman M.P.
        Acupuncture: an evaluation in the painful crises of sickle cell anaemia.
        Pain. 1979; 7: 181-185
        • Mahmooda L.A.
        • Reece-Stremtanc S.
        • Idiokitasa R.
        • et al.
        Acupuncture for pain management in children with sickle cell disease.
        Complement Ther Med. 2020; 49: 102287
        • Thomas L.S.
        • Stephenson N.
        • Swanson M.
        • Jesse D.E.
        • Brown S.
        A pilot study: the effect of healing touch on anxiety, stress, pain, pain medication usage, and physiological measures in hospitalized sickle cell disease adults experiencing a vaso-occlusive pain episode.
        J Holist Nurs. 2013; 31: 234-247
        • Rodgers-Melnick S.N.
        • Matthie N.
        • Jenerette C.
        • et al.
        The effects of a single electronic music improvisation session on the pain of adults with sickle cell disease: a mixed methods pilot study.
        J Music Ther. 2018; 55: 156-185
        • Sehlo M.G.
        • Kamfar H.Z.
        Depression and quality of life in children with sickle cell disease: the effect of social support.
        BMC Psychiatry. 2015; 15: 78
        • Butler D.J.
        • Beltran L.R.
        Functions of an adult sickle cell group: education, task orientation, and support.
        Health Soc Work. 1993; 18: 49-56
        • Fox P.
        • Ingram D.
        Theory and practice of self-induced pain management: approaches learned from effective copers.
        J Black Psychol. 1999; 25: 427-452
        • Kaslow N.J.
        • Collins M.H.
        • Brown F.
        • et al.
        Psychoeducational intervention for pediatric sickle cell disease (SCD) increases disease knowledge.
        Cochrane Central Register of Controlled Trials 2001:4. 2020;
        • Nash K.B.
        • Kramer K.D.
        Self-help for sickle cell disease in African American communities.
        J Appl Behav Sci. 1993; 29: 202-215
        • Telfair J.
        • Gardner M.M.
        African American adolescents with sickle cell disease: support groups and psychological well-being.
        J Black Psychol. 1999; 25: 378-390
        • Anie K.A.
        • Green J.
        • Tata P.
        • et al.
        Self-help manual-assisted cognitive behavioural therapy for sickle cell disease.
        Behav Cognit Psychother. 2002; 30: 451-458
        • Bodhise P.B.
        • Dejoie M.
        • Brandon Z.
        • Simpkins S.
        • Ballas S.K.
        Non-pharmacologic management of sickle cell pain.
        Hematology. 2004; 9: 235-237
        • Cummins O.
        • Anie K.A.
        A comparison of the outcome of cognitive behaviour therapy and hydroxyurea in sickle cell disease.
        Psychol Health Med. 2003; 8: 199-204
        • Gil K.M.
        • Anthony K.K.
        • Carson J.W.
        • et al.
        Daily coping practice predicts treatment effects in children with sickle cell disease.
        J Pediatr Psychol. 2001; 26: 163-173
        • McClellan C.B.
        • Schatz J.C.
        • Puffer E.
        • et al.
        Use of handheld wireless technology for a home-based sickle cell pain management protocol.
        J Pediatr Psychol. 2009; 34: 564-573
        • Thomas V.J.
        • Dixon A.L.
        • Milligan P.
        Cognitive-behaviour therapy for the management of sickle cell disease pain: an evaluation of a community-based intervention.
        Br J Health Psychol. 1994; 4: 209-229
        • Cozzi L.
        • Tryon W.W.
        • Sedlacek K.
        The effectiveness of biofeedback-assisted relaxation in modifying sickle cell crises.
        Biofeedback Self Regul. 1987; 12: 51-61
        • Ağargün M.Y.
        • Öner A.F.
        • Akbayram S.
        Hypnotic intervention for pain management in a child with sickle cell anemia.
        Sleep Hypnosis. 2001; 3: 127-128
        • Dinges D.F.
        • Whitehouse W.G.
        • Orne E.C.
        • et al.
        Self-hypnosis training as an adjunctive treatment in the management of pain associated with sickle cell disease.
        Int J Clin Exp Hypnosis. 1997; 45: 417-432
        • Zeltzer L.
        • Dash J.
        • Holland J.P.
        Hypnotically induced pain control in sickle cell anemia.
        Pediatrics. 1979; 64: 533-536
        • Dobson C.E.
        • Byrne M.W.
        Original research: using guided imagery to manage pain in young children with sickle cell disease.
        Am J Nurs. 2014; 114 (test 37, 47): 26-36
        • Jacob E.
        • Pavlish C.
        • Duran J.
        • et al.
        Facilitating pediatric patient-provider communications using wireless technology in children and adolescents with sickle cell disease.
        J Pediatr Health Care. 2013; 27: 284-292
        • Jacob E.
        • Stinson J.
        • Duran J.
        • et al.
        Usability testing of a smartphone for accessing a web-based e-diary for self-monitoring of pain and symptoms in sickle cell disease.
        J Pediatr Hematol Oncol. 2012; 34: 326-335
        • Fisher E.
        • Law E.
        • Dudeney J.
        • Eccleston C.
        • Palermo T.M.
        Cochrane Pain, Palliative and Supportive Care Group Psychological therapies (remotely delivered) for the management of chronic and recurrent pain in children and adolescents.
        Cochrane Database Syst Rev. 2019; 4: CD011118
        • Stone A.L.
        • Williams Z.
        • McNaull M.
        • Wilson A.C.
        • Karlson C.W.
        Daily associations between child and parent psychological factors and home opioid use in youth with sickle cell disease.
        Ann Behav Med A Publ Soc Behav Med. 2020; 54: 61-66
        • Bediako S.M.
        • Moffitt K.R.
        Race and social attitudes about sickle cell disease.
        Ethn Health. 2011; 16: 423-429
        • Bhatt-Poulose K.
        • James K.
        • Reid M.
        • Harrison A.
        • Asnani M.
        Increased rates of body dissatisfaction, depressive symptoms, and suicide attempts in Jamaican teens with sickle cell disease.
        Pediatr Blood Cancer. 2016; 63: 2159-2166
        • Haywood Jr., C.
        • Tanabe P.
        • Naik R.
        • Beach M.C.
        • Lanzkron S.
        The impact of race and disease on sickle cell patient wait times in the emergency department.
        Am J Emerg Med. 2013; 31: 651-656
        • Haywood Jr., C.
        • Lanzkron S.
        • Bediako S.
        • et al.
        Perceived discrimination, patient trust, and adherence to medical recommendations among persons with sickle cell disease.
        J Gen Intern Med. 2014; 29: 1657-1662
        • Penner L.A.
        • Dovidio J.F.
        • West T.V.
        • et al.
        Aversive racism and medical interactions with Black patients: a field study.
        J Exp Soc Psychol. 2010; 46: 436-440
        • Haywood C.
        • Diener-West M.
        • Strouse J.
        • et al.
        Perceived discrimination in health care is associated with a greater burden of pain in sickle cell disease.
        J Pain Symptom Manage. 2014; 48: 934-943
        • Lazio M.P.
        • Costello H.H.
        • Courtney D.M.
        • et al.
        A comparison of analgesic management for emergency department patients with sickle cell disease and renal colic.
        Clin J Pain. 2010; 26: 199-205
        • Holloway B.M.
        • McGill L.S.
        • Bediako S.M.
        Depressive symptoms and sickle cell pain: the moderating role of internalized stigma.
        Stigma Health. 2016; 2: 271-280
        • Tak-Ying Shiu A.
        • Kwan J.J.Y.-M.
        • Wong R.Y.-M.
        Social stigma as a barrier to diabetes self-management: implications for multi-level interventions.
        J Clin Nurs. 2003; 12: 149-150
        • Matthie N.
        • Hamilton J.
        • Wells D.
        • Jenerette C.
        Perceptions of young adults with sickle cell disease concerning their disease experience.
        J Adv Nurs. 2015; 72: 1441-1451
        • Matthie N.
        • Jenerette C.
        • McMillan S.
        Role of self-care in sickle cell disease.
        Pain Manag Nurs. 2015; 16: 257-266
        • Jacobs E.A.
        • Rolle I.
        • Ferrans C.E.
        • Whitaker E.E.
        • Warnecke R.B.
        Understanding African Americans' views of the trustworthiness of physicians.
        J Gen Intern Med. 2006; 21: 642-647
        • Thom D.H.
        Physician behaviors that predict patient trust.
        J Fam Pract. 2001; 50: 323-328
        • Mechanic D.
        • Meyer S.
        Concepts of trust among patients with serious illness.
        Soc Sci Med. 2000; 51: 657-668
        • Hall M.A.
        • Dugan E.
        • Zheng B.
        • Mishra A.K.
        Trust in physicians and medical institutions: what is it, can it be measured, and does it matter?.
        Milbank Q. 2001; 79: 613-639
        • Thom D.H.
        • Campbell B.
        Patient–physician trust: an exploratory study.
        J Fam Pract. 1997; 44: 169-176
        • Gordon H.S.
        • Street Jr., R.L.
        • Sharf B.F.
        • Kelly P.A.
        • Souchek J.
        Racial differences in trust and lung cancer patients' perceptions of physician communication.
        J Clin Oncol. 2006; 24: 904-909
        • O'Malley A.S.
        • Sheppard V.B.
        • Schwartz M.
        • Mandelblatt J.
        The role of trust in use of preventive services among low-income African-American women.
        Prev Med. 2004; 38: 777-785
        • Haywood Jr., C.
        • Lanzkron S.
        • Ratanawongsa N.
        • et al.
        The association of provider communication with trust among adults with sickle cell disease.
        J Gen Intern Med. 2010; 25: 543-548