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Table 5 Summary of testing completed and next steps for development of the QCECI and QCPCI

From: Factor structure of the Quality of Children’s Palliative Care Instrument (QCPCI) when completed by parents of children with cancer

Domain name

QCECI

QCPCI

Tested with 128 mothers of children who died from any cause

Next steps

Tested with 532 mothers and fathers of children living with cancer

Next steps

Connect with Families

16-item subscaleb

Use reduced number of items (from QCPCI) and test as part of a single measure

4 item subscalec

Continue testing as part of a single measure

Involve Parents

8-item subscaleb

Use reduced number of items (from QCPCI) and test as part of a single measure

5 item subscalec

Continue testing as part of a single measure

Share Information with Parents

9-item subscaleb

Reduce number of items and test as part of single measure

Not tested

Reduce number of items and test as part of single measure

Share Information Among Health Professionals

4-item subscaleb

Use reduced number of items (from QCPCI) and test as part of a single measure

3 item subscalec

Continue testing as part of a single measure

Support the Child

10 ‘stand-alone’ items with content and face validity

Continue to include as ‘stand-alone’ items

Not tested

Relevant for inclusion in future testing as ‘stand-alone’ items

Support Siblings

3 ‘stand-alone’ items with content and face validity

Test as part of a single measure

3 item subscalec

Continue testing as part of a single measure

Support Parents

11-item subscaleb

Test as part of a single measure

Not tested

Some items relevant and should be tested as part of a single measure

Provide Care at Death

7-item subscaleb

Test as part of a single measure

Not Applicable

Not Applicable

Provide Bereavement Follow-up

7-‘stand-alone’ items with content and face validity

Continue to include as ‘stand-alone’ items

Not Applicable

Not Applicable

Structures of Care

7-‘stand-alone’ items with content and face validity

Continue to include as ‘stand-alone’ items

Not tested

Relevant for inclusion in future testing as ‘stand-alone’ items

Additional itemsa

8 items on overall satisfaction for each domain

4 other outcome items

1 item rating overall care quality

Consider removing 8 items on satisfaction

1 item rating overall care quality

Continue inclusion

  1. aAdditional items were assessed for content and face validity and were used in the assessment of construct validity for individual subscales or the overall measure
  2. bEach subscale tested individually as a unique scale rather than testing the subscales together as a single measure
  3. cSubscales tested as a single measure