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

Ang, Felicia Jia Ler; Gandhi, Mihir; Ostbye, Truls; Malhotra, Chetna; Malhotra, Rahul; Chong, Poh Heng; Amin, Zubair; Chow, Cristelle Chu-Tian; Tan, Teresa Shu Zhen; Tewani, Komal; Finkelstein, Eric Andrew

doi:10.1186/s12904-024-01401-x

Table 4 Abbreviated items of the 57-item content-validated PaRental Experience with care for Children with serIOUS illnesses (PRECIOUS)

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

Item code	Theme^a	Subtheme^b	Indicator
p1	ESS	Amc	Access to range of medical expertise needed to manage child's condition(s)
p2	ESS	Amc	Access to sufficient financial support for child’s medical expenses so costs did not stop child from receiving recommended medical care
p3	ESS	Ccc	Care worker/team that organized child's care across different care services
p4	ESS	Ccc	Consistent information from different healthcare workers
p5	SPC	Rb	Access to sufficient financial support for child's non-medical expenses so costs did not stop child from receiving recommended non-medical care
p6	CHC	Hac	Appropriate allied health support to meet parental goals for child's development
p7	CHC	Hac	Child formally received advice or care from palliative or supportive care team or specialist(s)
p8	CHC	Hac	[DISPLAYED IF RESPONSE = ‘YES’ to p7] Parent introduced to palliative or supportive care team or specialist(s) at appropriate time
Over the past 12 months, our child’s HCW…
p9	ESS	Amc	Advised parent on how to obtain medical equipment(s) and supplies
p10	ESS	Ccc	Worked together to ensure medical condition(s) are well managed
p11	ESS	Amc	Approachable when parent needed advice
p12	ESS	Ccc	Worked together towards common goals for child
p13	ESS	Ccc	Organized appointments to reduce hospital visits
p14	PQ	Rsc	Built a trusting relationship with parents
p15	PQ	Rsc	Kept parents well informed about child’s condition
p16	PQ	Rsc	Communicated in sensitive way
p17	PQ	Rsc	Gave enough time for parent think about decisions
p18	PQ	Pcom	Responsive in managing medical issues
p19	PQ	Pcom	Avoided treatments and investigations not aligned with parental goals
p20	PQ	Pcom	Managed physical symptoms to make sure child was comfortable
p21	PQ	Pcom	Ensured child's wellbeing when child was under their care
p22	SPC	Emp	Kept parents updated about symptoms of clinical deterioration
p23	SPC	Emp	Equipped parents with skills to confidently care for child
p24	SPC	Emp	Acknowledged parental efforts
p25	SPC	Emp	Listened to parents when they advocated for child
p26	SPC	Pss	Showed care and concern
p27	SPC	Pss	Helped parents maintain hope
p28	SPC	Pss	Prepared parents for what may lie ahead
p29	SPC	Pss	Provided a kind listening ear
p30	SPC	Rb	Advised parents on how to reduce medical expenses, such as access to subsidies or financing schemes
p31	CHC	Hac	Interacted well with child
p32	CHC	Hac	Assessed child's physical, cognitive and emotional development
p33	CHC	Sdm	Informed parents of available medical options
p34	CHC	Sdm	Clearly explained advantages and disadvantages of options for parents to make informed decisions
p35	CHC	Sdm	Discussed how care could be adjusted to improve child's comfort
p36	CHC	Sdm	Involved parent as much as they wanted in decision-making
p37	CHC	Sdm	Considered parental preferences for treatments
p38	SPC	Emp	Invited parents to contribute to the community
p39	CHC	Hac	Treated child in a kind and respectful way
p40	PQ	Rsc	Respectful of spiritual or religious beliefs and practices
p41	SPC	Pss	Helped parents access available parent support groups
p42	SPC	Rb	Offered information on specialized transport for child
p43	SPC	Pss	Supported family's emotional needs related to child's condition
p44	SPC	Rb	Found someone to take care of child when parents needed help
p45	CHC	Hac	Provided emotional support to child
p46	CHC	Hac	Helped child access special needs school/day-care
p47	CHC	Hac	Communicated child's medical needs in school/day-care to their staff
p48	ESS	Ccc	Ensured smooth transition of care for child across different care settings
p49	ESS	Eaf	Attended to child within reasonable amount of time at Emergency Department
Did your child spend at least 1 night in a hospital in the last 12 months? [DISPLAY LOGIC; IF YES, SHOW p50 – p55]
p50	ESS	Eaf	Diet provided suited our child’s medical needs
p51	ESS	Eaf	Parent able to stay close to child
p52	ESS	Eaf	Appropriate action taken to minimize exposure to infectious diseases
p53	CHC	Hac	Parent able to bond with child
p54	ESS	Eaf	Flexibility to decide who could be at child's bedside in the Intensive Care Unit
p55	SPC	Rb	Time to train a long-term caregiver to care for child before discharge
Has your child been cared for at home in the last 12 months? [DISPLAY LOGIC; IF YES, SHOW p56 – p57]
p56	SPC	Emp	Enough consultations to support the care of child
p57	SPC	Rb	Avoided unnecessary hospitalizations

^aESS Efficient healthcare structures and standards, SPC Supporting parent caregivers, CHC Collaborative & holistic care, PQ Professional Qualities of healthcare workers
^bRsc Responsive and sensitive communication, Pcom Competency of healthcare delivery, Emp Empowering parent-caregivers, Pss Providing psychosocial support to parents and family, Rb Reducing caregiving stress and burdens, Sdm Shared decision-making, Hac Holistic approach to care for the child, Amc Accessible medical care, Eaf Effective administration and facilities, Ccc Coordination and continuity of care

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ISSN: 1472-684X

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