Physical and cognitive‐behavioral activities used in the home management of sickle pain: A daily diary study in children and adolescents

INTRODUCTIONUnpredictable recurrent episodes of pain from vaso-occlusion, the so-called ‘‘sickle crisis,’’ are the mostfrequent manifestation of sickle cell disease (SCD) inchildrenandadults[1,2].Whilemanyhealthprofessionalsview this disorder from the perspective of frequenthospitalizations, recent studies suggest that patients andfamilies, even those with young children, manage most ofthese painful episodes at home [3–7]. Analgesic medica-tions are the main therapeutic modality for most painsyndromes and are used on most of the days with sickle-related pain treated in the hospital or at home [7–9].As alternatives to analgesics or as complementarytherapies, physical strategies, such as the application ofheat/cold or massage, are useful in many pain syndromes[10,11],andthereisalargebodyofevidenceregardingthepain relieving efficacy of many different cognitive-behavioral activities [12–14]. Evidence for the effective-ness of these non-pharmacologic strategies for thetreatment of sickle pain is limited. Systematic studies ofmassage or heat for the treatment of vaso-occlusive painhave not been reported, but several small studies havedescribed the clinical use of biofeedback, acupuncture,or transcutaneous electrical nerve stimulation [15–18].Studies of cognitive-behavioral programs that included—relaxation, imager, or self-hypnosis, have demonstratedbeneficial short-term treatment outcomes in adults andchildren with SCD [19–22], but long-term benefit has notbeen well established.In order to determine the home pain managementactivities used by children and adolescents with SCD andtheircaregivers,along-termlongitudinalstudyusingdailydiaries was conducted.PATIENTS AND METHODSStudy DesignAllpatientscompleteddiariesduringaninitial6-monthperiod, as this time period was used to study the relation-ship between pain frequency and baseline hematologicvariables to be reported elsewhere. After the initial 6-month period, subjects were asked to continue diary