Arthritis & Rheumatism, Volume 63,
November 2011 Abstract Supplement
Abstracts of the American College of
Rheumatology/Association of Rheumatology Health Professionals
Annual Scientific Meeting
Chicago, Illinois November 4-9, 2011.
Accounts of Chronic Pain and Emotional Distress in Children and Youth with Juvenile Idiopathic Arthritis or Chronic Pain: Qualitative Analysis of Interviews to Assess Content Validity of the Patient Reported Outcome Measurement Information System.
Jacobson1, C. Jeffrey, Farrell2, Jennifer, Kashikar-Zuck2, Susmita, Verkamp2, Emily, Seid3, Michael, DeWitt2, Esi Morgan
Chronic pain in children and adolescents is associated with functional impairment, increased distress, and reduced quality of life. Assessment of the pain experience is heavily dependent on child and youth self-reports of pain intensity, pain quality and emotional distress. However, knowledge about how children and adolescents understand and talk about their pain and distress and how this may vary across diagnosis, gender, or age or developmental stage is limited. Little research has examined the thematic, semantic and linguistic content of child accounts of pain and distress across these groups The objective of the current study was to qualitatively evaluate the content validity of the NIH Patient Reported Outcomes Measurement Information System (PROMIS, nihpromis.org) pediatric measures for self-reported health outcomes from the perspective of children and youth with juvenile idiopathic arthritis (JIA) or chronic pain syndromes. The eight PROMIS pediatric measures include a Pediatric Pain Interference Scale as well as emotional distress scales.
Trained interviewers conducted semi-structured individual interviews with children and youth ages 8 to 18 years old with either JIA or a non-inflammatory chronic pain syndrome). Each interview covered 2 to 4 of the health concepts underlying the 8 PROMIS pediatric domains: Anxiety, Anger, Depressive Symptoms, Fatigue, Pain Interference, Peer Relationships, Physical Function (Upper Extremity, and Mobility). For each domain, interviews elicited the subjective meaning of the construct and using both open-ended and structured probes. Participants also completed PROMIS Short Forms which were scored. Audio-recorded interviews were transcribed verbatim and entered into a qualitative text management software program (NVIVO8) to facilitate analysis. Transcript content was evaluated in relation to 1) the item-conceptual content of the 8 PROMIS domains 2) possible age-related differences in comprehension and reporting of the domains and 3) possible diagnosis-related differences in expression and reporting of the domains.
31 youth (16 JIA, 15 chronic pain) were interviewed, mean age 13.7 years (range 818), 80.6% female. We found age- and gender-related differences in child-reported understandings, expression, and articulation of the domains of anger, anxiety, depression and pain interference. Children younger than 14 years typically had difficulty defining one affective-distress domain without referring to another. Female participants were more verbally expressive than males. Differences based upon diagnosis were also explored to see whether there was any evidence of medical socialization in these illness groups.
These findings suggest need for a rigorous developmental approach to pediatric patient reported outcome measure development. Experience and expression of health constructs differed based upon developmental status, and possibly in part due to medical socialization.
To cite this abstract, please use the following information:
Jacobson, C. Jeffrey, Farrell, Jennifer, Kashikar-Zuck, Susmita, Verkamp, Emily, Seid, Michael, DeWitt, Esi Morgan; Accounts of Chronic Pain and Emotional Distress in Children and Youth with Juvenile Idiopathic Arthritis or Chronic Pain: Qualitative Analysis of Interviews to Assess Content Validity of the Patient Reported Outcome Measurement Information System. [abstract]. Arthritis Rheum 2011;63 Suppl 10 :2492