Additional resources from Lunch and Learn: The Good, Bad, and the Ugly: Treatment of Complex Regional Pain Syndrome in Pediatrics 1) Summary of the outcome measures from reference: Packham T, MacDermid J, Henry J, Bain J. A systematic review of psychometric evaluations of outcome assessments for complex regional pain syndrome. 2012; 34(13): 1059-1069. 19 different assessment tools covered by the 23 papers Six upper extremity tools were revealed by this review: -ROM of the upper limb -grip strength dynamometry -composite CRPS evaluation combining pain visual analogue scale (VAS), swelling, AROM measures, and grip strength - the Impairment Sum Score (ISS), including edema measured by volumeter, skin temperature measured by infrared thermometry, an AROM score, pain VAS, and pain descriptors from the short-form McGill; -the Upper Limb Activity Monitor, a portable sensor array that measures frequency and intensity of upper limb motion over a 24-hour period in the clients home; -Radboud Skills Questionnaire (RSQ), a 45-item self-reported evaluation of personal care, domestic activities, and other activities (including work, social and leisure activities). Five lower extremity instruments also emerged: a lower extremity version of the ISS ; a four-part foot function evaluation of 1) forward/backward shifting and 2) lateral shifting of a foot panel, 3) alternately touching two bells, and 4) depressing a pedal; and a trio of self-report questionnaires. Walking Activity questionnaire covers walking indoors and outdoors, walking speed and the use of aids with 35 questions. Walking Stairs questionnaire includes 15 items, such as time, effort, avoidance, use of aids, and the need for assistance. Rising and Sitting questionnaire is a unidimensional scale consisting of 39 items, such as sitting/rising from high and low seats, getting on/off toilet, and getting in/out of the car. The remaining eight tools addressed more global concepts including brush evoked allodynia ; reported average pain intensity with
a VAS ; and skin temperature with 3 different measurement instruments (thermistor, tympanic and skin thermometers). RSD assessment process was a composite score including a numeric rating scale (NRS) for pain from joint palpation, edema measures, skin temperature, AROM, McGill, and VAS for pain, again reflecting a mix of observed and self-reported components. Short-form McGill pain questionnaire (SF-MPQ-2) has been expanded to include 22 items rated on 10- point metric in 4 subscales (continuous pain, intermittent pain, predominantly neuropathic pain, and affective descriptors). Neuropathic Pain Questionnaire (NPQ) asks respondents to rank 12 items from a single scale with a NRS 0 100, including burning pain, increased pain due to weather changes, and questions such as How overwhelming is your usual pain, while the Neuropathic Pain Scale (NPS) has 10 questions rated 0 10 such as pain sharpness, heat/cold, dullness, pain intensity, surface/deep pain, and overall unpleasantness. Trauma Related Neuronal Dysfunction (TReND) questionnaire is a self-report including 164 items in 10 subscales incorporating sensory, trophic, autonomic, motor, and visceral domains. 2) Summary of outcome measures from: Callanen A. Complex Regional Pain Syndrome in Children and Adolescents Clinical Review. Cinahl Information Systems. September 2016. Child Health Questionnaire (CHQ) Health profile specifically developed for children and adolescents; short form and full-length Pediatric Quality of Life Inventory (Peds-QL)(16) Valid and reliable quality of life tool for children and adolescents ; includes school functioning subscale 5-point scale; higher the score, the greater the disability Patient Specific Functional Scale (PSFS) Fear Avoidance Beliefs Questionnaire (FABQ) Functional Disability Index (FDI)(16) Valid and reliable test consisting of 15 items concerning perceptions of physical and psychosocial functioning during the past 2 weeks Total scores range from 0 to 60 with higher scores indicating greater disability
Dallas Pain Questionnaire 16-item VAS developed for the purpose of evaluating cognition about the percentage that chronic pain affects four aspects of the patient s life (daily sleeping, work and leisure activities, anxiety-depression, social interest) Sheehan Disability Scale: developed to assess functional impairment in 3 domains: work/school, social, and family life Patient rates the extent to which work/school, social life, and family life are impaired by his/her symptoms on a 10-point VAS 3) Psychometric outcomes as part of our program at Cleveland Clinic Children s Hospital for Rehabilitation Parent Rated Measures 1) Physical and Emotional functioning: The Patient-Reported Outcome Measurement Information System (PROMIS) is an empirically designed measure of various domains of functioning, developed by the National Institute of Health (NIH) (Irwin et al., 2010). The following parent-proxy domains of child functioning will be assessed: Pain Interference, Mobility, Upper Extremity functioning, Anxiety, Depression, and Fatigue. Short forms will be used for all items except Anxiety and Depression. 2) Global Outcomes: A 10-item clinical outcomes measure was designed for the purposes of this database, based upon expert consensus recommendations (McGrath et al., 2008). Face-valid single items assess: school days missed in last 30 days; parent work days missed in last 30 days; hospital admissions in last 30 days; total prescriptions currently held; total OTC medication doses taken in last 48 hours; total prescription medication doses taken in last 48 hours; total PCP visits in last 30 days; total specialist visits in last 30 days; total psychologist/mental health visits in last 30 days; total physical/occupation therapy visits in last 30 days. 3) Pain Coping. The Pain Coping Questionnaire (PCQ), parent-proxy is an adapted form of the 39-item selfreport version to reflect parent report of child s coping strategies for their pain symptoms. Higher scores on 8 specific subscales indicate the most frequently used coping strategies. (Reid, Gilbert, & McGrath, 1998). 4) Parent Catastrophizing: Parental catastrophic thinking about child s pain will be measured using the Childrelated Catastrophizing subscale of the Bath Adolescent Pain-Parental Impact Questionnaire (BAP-PIQ). This is a 5-item parental self-report questionnaire. Items consist of a 5- point Likert scale ranging from 0 ( Never ) to 4 ( Always ). Higher scores reflect more catastrophic thinking. (Eccleston et al., 2007; Jordan et al., 2008). 5) Parent Self-Blame: Parental negative thoughts about themselves will be measured using the Self-Blame subscale of the Bath Adolescent Pain-Parental Impact Questionnaire (BAP-PIQ). This is a 5-item parental selfreport questionnaire. Items consist of a 7-point Likert scale ranging from 0 ( Never ) to 4 ( Always ). Higher scores reflect more self-blame. (Eccleston et al., 2007; Jordan et al., 2008). 6) Adult Responses to Children s Symptoms (ARCS). The ARCS is a 29-item child report of parent behaviors in response to children s pain symptoms. Higher scores on 3 empirically-derived factors indicate most frequent type of parental response. (Van Slyke & Walker, 2006)
7) Family Assessment Device-General Functioning subscale (FAD-GF). The FAD is a 12-item child report of family patterns in functioning. After appropriate coding, higher scores reflect less healthy family environment patterns. (Ryan, Epstein, Keitner, Miller, & Bishop, 2005) 8) Parent Health: Parent health is assessed using the 10-item Global Health scale subscale of the Patient- Reported Outcome Measurement Information System (PROMIS) developed by the National Institute of Health (NIH) (Hays et al., 2009). Item responses are recoded and summed to provide a measure of physical health and mental health. Child Rated Measures: 9) Pain-related functioning: The Patient-Reported Outcome Measurement Information System (PROMIS) is an empirically designed measure of various domains of functioning, developed by the National Institute of Health (NIH) (Irwin et al., 2010). The following domains of child functioning will be assessed: Pain, Pain Interference. 10) Physical and Emotional functioning: The Patient-Reported Outcome Measurement Information System (PROMIS) is an empirically designed measure of various domains of functioning, developed by the National Institute of Health (NIH) (Irwin et al., 2010). The following domains of child functioning will be assessed: Mobility, Upper Extremity functioning, Anxiety, Depression, and Fatigue. The short forms will be used for all measures except Anxiety and Depression. 11) Pain-specific anxiety items. The Bath Adolescent Pain Questionnaire (BAPQ) pain-specific anxiety questionnaire is a seven-item self-report designed to assess the frequency with which a child is experiencing anxiety or worry about their pain. Youth rate the frequency with which they have anxious thoughts on a 5-point Likert scale ranging from 0 = never to 4 = always. A sum score is calculated from all items (total ranging from 0-28), with a higher score indicating a greater level of pain-specific anxiety (Eccleston et al., 2005). 12) Chronic Pain Acceptance. The Chronic Pain Acceptance Questionnaire (CPAQ) is a 20-item self-report measure of beliefs or attitudes relating to one s personal experience of pain. The CPAQ is designed to measure two aspects of acceptance: (a) pain willingness and (b) activity engagement. Higher scores on each subscale indicate greater acceptance of pain (McCracken et al., 2004). 13) Pain Coping Questionnaire (PCQ). The PCQ is a 39-item child self-report questionnaire of coping strategies related to pain symptoms. Higher scores on 8 specific subscales indicate the most frequently used coping strategies. (Reid, Gilbert, & McGrath, 1998) 14) Child Self-Efficacy Scale (CS-ES). The CS-ES is a 7-item self-report of a child s feelings of self-efficacy regarding behaviors when in pain. Higher scores reflect lower self-efficacy. (Bursch, Tsao, Meldrum, & Zelzter, 2006) 15) Social Support Scale for Children (SSSC). The SSSC is a 24-item self-report of perceived support and positive regard from four people in the child s life: parent, teacher, classmate, and close friend (6 items each for 24 items total). Lower scores indicate lower levels of perceived support. (Harter, 1985; 2012)
16) Adult Responses to Children s Symptoms (ARCS). The ARCS is a 29-item self-report of parent behaviors in response to their children s pain symptoms. Higher scores on 3 empirically-derived factors indicate most frequent type of parental response. (Van Slyke & Walker, 2006) 17) Family Assessment Device-General Functioning subscale (FAD-GF). The FAD is a 12-item parent report of family patterns in general family functioning. After appropriate coding, higher scores reflect less healthy family environment patterns. (Ryan, Epstein, Keitner, Miller, & Bishop, 2005)