Development of the Parental Experience with Care for Children with Serious Illnesses (PRECIOUS) quality of care measure

Table 5 Results of pilot-testing the PaRental Experience with care for Children with serIOUS illnesses (PRECIOUS) measure

	Median (Interquartile range)
Time to complete (minutes)	16.6 (11.0 – 26.6)
Response Rate Statistics	N (%)
Invited respondents	70 (100)
Eligible respondents	50 (71)
Consenting respondents	40 (80)
Dropouts	10 (25)
Scale responses^a	Valid responses (N)	Mean	SD	Min	Max
PRECIOUS
Efficient healthcare structures and standards, 15 items	30	2.57	0.69	1.07	4.00
Supporting parent caregivers, 18 items	30	2.25	0.75	1.31	4.00
Collaborative & holistic care, 15 items	30	2.27	0.69	1.29	3.67
Professional Qualities of healthcare workers, 9 items	30	2.80	0.75	1.63	4.00
Quality of children’s palliative care instrument (QCPCI)^b
Connect with Families, 4 items	30	2.42	0.81	1	4
Involve Parents, 5 items	30	2.72	0.70	1.2	4
Share Information Among Health Professionals, 3 items	30	2.45	0.72	0.67	4
Support Siblings, 3 items	14	1.05	0.80	0	2.67
Global rating (Overall quality)	30	2.30	0.95	1	4
Measure of Processes of Care (MPOC-20)^c
Enabling & Partnership, 3 items	30	4.70	1.17	1	7
Providing General Information, 5 items	29	3.89	1.38	1	6.8
Providing Specific information about Child, 3 items	30	4.31	1.26	2.3	7
Coordinated & Comprehensive Care, 4 items	30	4.64	1.22	2.25	7
Respectful & supportive Care, 5 items	30	4.77	1.10	3	7

^aQCPCI was created to assess the quality of pediatric palliative care and validated amongst children living with cancer. A respondent's data yield four scores, one for each of four subscales. MPOC is a self-report measure of parents’ perceptions of the extent to which the health services they and their child(ren) receive are family-centred
^bQCPCI uses a 5-point Likert scale; Never = 0 / Rarely = 1 / Sometimes = 2 / Frequently = 3 / Always = 4, and one additional 5-point global quality-of-care rating on a scale of Poor = 0 / Fair = 1 / Good = 2 / Very Good = 3 / Excellent = 4. A respondent's data yield five scores, one for each of five subscales
^cMPOC-20 uses a 7-point Likert scale ranging from Not at All = 1 / To a Very Small Extent = 2 / To a Small Extent = 3 / To a Moderate Extent = 4 / To a Fairly Great Extent = 5 / To a Great Extent = 6 / To a Very Great Extent = 7. Items answered ‘Not applicable’ are assigned a value of ‘0’

ISSN: 1472-684X