Sickle Cell Disease Pain Burden Interview-Youth

Instrument Name: Sickle Cell Disease Pain Burden Interview-Youth

Abbreviation: SCPBI-Y

Points for Consideration:

None

Description of Tool:

The Sickle Cell Disease Pain Burden Interview-Youth (SCPBI-Y) is a 7-item multidimensional PRO developed to assess pain burden among children and adolescents with sickle cell disease. Patients are asked to think about the last month when rating how many days they have experienced pain or impact on a 5-level scale "None", "A few", "Some", "Many", "Every". Higher scores represent higher pain burden.

Other Related Tools (if applicable):

None identified

Minimum Qualification Required by COA Administrator: No degree requirement

Comment:

None

Year: 2013

Objective of Development:

To assess pain burden among children and adolescents with sickle cell disease

Population of Development: Age range (therapeutic indication):

Age range: 7-21 years (Anemia, Sickle Cell)

Pediatric Population(s) in which COA has been used:

Children and adolescents with sickle cell disease

COA type: PRO

Number of Items 7

Mode of Administration: Interview administered to patients and their caregiver(s)

Data Collection Mode: Paper and pen administration

Time for Completion: 1-minute

Response Scales: 5-point Likert scale ranging from 0="None", 1="A few", 2="Some", 3="Many", 4="Every"

Summary of Scoring:

Available scores: Global score ranging from 0 to 28

Weighting: No

Score Interpretation: Higher score=Higher pain burden

Evidence of Literature Review: None identified

Evidence of Instrument Review: Yes

Evidence of Clinical or Expert Input: Yes

Evidence of concept elicitation in target patient population: None identified

Evidence of a Saturation Grid: None identified

Evidence for Selection of Data Collection Method: None identified

Recall/Observation Period: Past month

Evidence for Selection of Reponse Options: None identified

Evidence of cognitive interviewing of draft instrument in target patient population: None identified

Evidence of Preliminary Scoring of Items and Domains: None identified

Evidence related to respondent and administrator burden: None identified

Evidence of a Conceptual Framework: None identified

Evidence of an item-tracking matrix: None identified

Evidence related to item selection: None identified

Evidence of re-testing the final version: Yes

Internal consistency (Cronbach's alpha): None identified

Evidence of internal consistency: None identified

Test-retest Reliability (ICC):

Zempsky WT (2013)
Test-retest reliability
- Pearson's correlation coefficient: 0.80; p<0.001 - Was a definition of stability applied to identify stable patients: No - Time frame between the two administrations: 1 week - Population/Disease: Youth with sickle cell disease aged 7-21 years; n=47

Inter-rater/ inter-interviewer reliability (kappa):

Zempsky WT (2013)
-Correlation Coefficient used: Pearson's r. Reliability was 0.78, p<0.001. -Population/Disease: n=40/129 youth with sickle cell disease aged 7-21 years

Evidence of test-retest or inter-rater reliability: Yes

Concurrent validity (convergent, divergent):

Zempsky WT (2013)
Convergent validity
- Correlation coefficients used: Pearson's r
- Measures: SCPBI-Y, Children's Activity Limitations Interview-21 (CALI), Positive and Negative Affect Schedule- Child Version (PANAS), Pediatric Quality of Life Inventory (PedsQL) Generic 4.0
- Results: There were significantly moderate to strong relationships, in which higher scores on the SCPBI-Y (indicating higher pain burden) were related to increased activity limitations and poorer health-related quality of life as assessed by validated measures.
CALI: outpatient r=0.64 (p<.001); inpatient r=0.41 (p<.01); combined group r=0.54(p<.001) PANAS-Negative: outpatient group r=0.49 (p<.001) PedsQL: outpatient group r=-0.65 (p<.001); inpatient groups r=-0.61 (p<.001); combined group r=-0.66 (p<.001) - Population/Disease: Youth with sickle cell disease aged 7-21, n=129 Zempsky WT (2013) Construct validity - Correlation coefficients used: Pearson's r - Measures: SCPBI-Y - Results: A positive relationship between higher pain burden and increased number of reported days of pain over the last four weeks for the outpatient group (n=56, r=0.73, p<.001). - Population/Disease: Youth with sickle cell disease aged 7-21; n=56 Zempsky WT (2013) Divergent validity - Correlation coefficients used: Pearson's r - Measures: SCPBI-Y; PANAS-Positive Affect - Results: A significant and weak inverse relationship, in which higher pain burden on the SCPBI-Y was associated with less positive affect on the PANAS-Positive Affect in the outpatient group and no relationship in the inpatient group. PANAS-Positive Affect: outpatient r=-0.28 (not significant), inpatient r=-0.08 (not significant), combined r=-0.31 (p<.01). - Population/Disease: Youth with sickle cell disease aged 7-21; n=56

Known-group validity:

Zempsky WT (2013)
- Measure/Groups of patients: outpatient group (n=62) vs inpatient group (n=67); patients with severe Sickle Cell Disease (SCD) symptoms (n=29) vs non-severe symptoms of SCD (n=30).
- A priori hypotheses: It was expected that SCPBI-Y scores (indicating pain burden) would be greater in patients who were hospitalized for acute vaso-occlusive pain, when compared with outpatients at baseline status. Pain burden would be greater in patients with more severe disease than patients with milder disease.
- Were hypotheses confirmed: Yes
- Results: As hypothesized, patients in the inpatient group had significantly greater pain burden than patients in the outpatient group (t(127)=-5.12, P<.001). Patients with severe SCD reported significantly greater pain burden than patients who exhibited non-severe symptoms (t(57)=-3.52, P<.001) - Population/Disease: Youth with sickle cell disease aged 7-21; n=129

Evidence of Translatability Assessment: None identified

Evidence related to missing data: None identified

Evidence for Selection of Recall Period: Yes

Evidence of Administration Instructions and Training Provided: None identified

Evidence of concurrent validity: Yes

Evidence of known-groups validity: Yes

Evidence of ability to detect change over time: None identified

Ability to detect change (Responsiveness):

None identified

Responder Thresholds:

None identified

Evidence of responder thresholds: None identified

Zempsky, W. T., O'Hara, E. A., Santanelli, J. P., Palermo, T. M., New, T., Smith-Whitley, K., & Casella, J. F. (2013). Validation of the sickle cell disease pain burden interview-youth. The journal of pain, 14(9), 975–982. Full Text Article: https://pubmed.ncbi.nlm.nih.gov/23701707/

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Yes

Original language: English for the USA

None identified

Author:
William T Zempsky
Division of Pain and Palliative Medicine
Department of Pediatrics
Connecticut Children’s Medical Center
Hartford
XCT

Contact: William T. Zempsky, MD, MPH, Phone: 860-545-9041, Fax: 860-545-9969, wzempsk@ccmckids.org.

The SCPBI-Y is not copyrighted.

None identified

https://doi.org/10.1016/j.jpain.2013.03.007