Development of the quality of teen trauma acute care patient and parent-reported experience measure

Yeung, Matthew; Hagel, Brent E.; Bobrovitz, Niklas; Stelfox, Thomas H.; Yanchar, Natalie L.

doi:10.1186/s13104-022-06194-x

BMC Research Notes

Table 1 Survey Test-Retest Kappa and Agreement Percentage

From: Development of the quality of teen trauma acute care patient and parent-reported experience measure

Adolescent patient questions	Re-test agreement (%)	Kappa (poor reliability highlighted)	95% CI	Kappa from original QTAC-PREM	Parent questions	Re-test agreement (%)	Kappa (poor reliability highlighted)	95% CI	Kappa from original QTAC-PREM
PREM questions
In-hospital information and communication
Q6.2 How often did your healthcare practitioners clearly explain all your injuries to you in a way you could understand?	64	0.27^A	-0.03–0.56	0.51	Q7.2 How often did your teen's healthcare practitioners clearly explain all their injuries to you in a way you could understand?	78	0.44^A,B	0.16–0.73	0.51
Q6.3 How often did the healthcare practitioners (e.g. doctors, nurses, therapists, etc.) explain what was happening in a way you could understand?^C	82	0.61^A	0.37–0.86		Q7.3 How often did the healthcare practitioners (e.g. doctors, nurses, therapists, etc.) explain your teen's treatment in a way you could understand?^C	85	0.63^A	0.40–0.85	n/a
Q13.1 Did the healthcare practitioners give instructions on how you should care for your injuries?	82	0.36^A	-0.01–0.73	0.64	Q14.2 Did the healthcare practitioners give instructions on how you should care for your teen's injuries?	90	0.57^A	0.25–0.89	0.64
Q6.4 Did the healthcare practitioners discuss how long it might take you to recover from your injuries?	85	0.40	-0.17–0.97	0.69	Q7.4 Did the healthcare practitioners discuss how long it might take your teen to recover from their injuries?	93	0.51	0.10–0.92	0.69
Q6.5 Did the healthcare practitioners discuss the long-term consequences of your injuries (on sports, music, extracurriculars, etc.) after you leave the hospital?^C	85	0.64	0.40–0.89		Q7.5 Did the healthcare practitioners discuss the long-term consequences of your teen's injuries (on sports, music, extracurriculars, etc.) after they leave the hospital?^C	90	0.62	0.29–0.95	n/a
Q6.6 How often was the information that was given by your various healthcare practitioners consistent?	77	0.56^A	0.31–0.80	0.78	Q7.6 How often was the information that was given by your teen's various healthcare practitioners consistent?	83	0.64^A	0.38–0.90	0.78
Clinical and ancillary care
Q6.1 When meeting new healthcare practitioners for the first time, how often did they introduce themselves and clearly explain their role in your care?	79	0.47^A	0.17–0.77	0.78	Q7.1 When meeting new healthcare practitioners for the first time, how often did they introduce themselves and clearly explain their role in your teen's care?	83	0.37^A	0.00–0.74	0.78
Q84 When the healthcare practitioners helped you to move around (i.e., change position in bed, walking, etc.) how often did they do it carefully?	62	0.46^A	0.20–0.71	0.64	Q93 When the healthcare practitioners helped your teen to move around (i.e., change position in bed, walking, etc.) how often did they do it carefully?	61	0.29^A	0.05–0.54	0.64
Q10.4 How often was the pain from your injuries well controlled?	56	0.41^A	0.19–0.62	0.72	Q11.4 How often was your teen's pain from their injuries well controlled?	80	0.64^A	0.44–0.85	0.72
Q10.5 How often did the healthcare practitioners do everything they could to help you with your discomfort, agitation or irritability?	77	0.65^A	0.46–0.85	0.71	Q11.5 How often did the healthcare practitioners do everything they could to help your teen with their discomfort, agitation or irritability?	80	0.53^A	0.26–0.79	0.71
Q10.6 When you had questions, concerns or frustrations about your care, how often did your healthcare practitioners take action?	51	0.30^A	0.09–0.51	0.68	Q11.6 When you or your teen had questions, concerns or frustrations about your teen's care, how often did their healthcare practitioners take action?	66	0.25^A	-0.03–0.52	0.68
Q10.7 Did healthcare practitioners (e.g. psychologist, social worker, nurse) offer to speak to you about your mental or emotional health?	59	0.52^A	0.30–0.74		Q11.7 Did a healthcare practitioner (e.g. psychologist, social worker, nurse) offer to speak to you or your teen about their mental or emotional health?	61	0.59^A	0.40–0.79	n/a
Q10.8 How often did the hospital staff offer to help you maintain your personal hygiene (brushing teeth, bathing, etc.)?	62	0.58^A	0.37–0.79	0.68	Q11.8 How often did the hospital staff offer to help your teen maintain their personal hygiene (brushing teeth, bathing, etc.)?	61	0.68^A	0.52–0.83	0.68
Q10.10 How often did you experience care that you thought was unsafe?	87	0.22^A	-0.15–0.59	0.88	Q11.10 How often did your teen experience care that you thought was unsafe?	100	1.00		0.88
Q10.11 How often were you treated unfairly because of your age, ethnicity, gender, or personal characteristics?	100	1.00		0.44	Q11.11 How often was your teen treated unfairly because of their age, ethnicity, gender, or personal characteristics?	100	1.00		0.44
Q10.12 How often did you feel you were treated in a way that was not appropriate for your age?^C	90	0.23^A	-0.17–0.63		Q11.12 How often did you feel your teen was treated in a way that was not appropriate for their age?^C	100	1.00		n/a
Social network supports
Q8.1 How often did your friends visit you while you were in hospital?^C	82	0.65^A	0.41–0.89		Q9.1 How often did your teen's friends visit them while they were in hospital?^C	85	0.81^A	0.66–0.97	n/a
Q8.2 Why do you think your friends did not visit you in hospital (select all that apply)?^C	95	0.74	0.42–1.07		Q9.2 Why do you think your teen's friends did not visit them in hospital (select all that apply)?^C	53	0.40	0.16–0.64	n/a
Q8.3 How often do you think your friends would have felt comfortable visiting you while you were in the hospital?^C	52	0.32^A	0.04–0.59		Q9.3 How often do you think your teen's friends would have felt comfortable visiting them while they were in hospital?^C	47	0.21^A	-0.05–0.46	n/a
Q8.4 How often would you have felt comfortable having your friends visit you while you were in the hospital?^C	52	0.18^A	-0.08–0.45		Q9.4 How often would your teen have felt comfortable having their friends visit them while they were in the hospital?^C	86	0.77^A	0.47–1,08	n/a
Q8.5 How often do you think your friends felt comfortable visiting you while you were in the hospital?^C	75	0.62^A	0.09–1.14		Q9.5 How often do you think your teen's friends felt comfortable visiting them while they were in hospital?^C	71	0.56^A	0.16–0.96	n/a
Q8.6 How often did you feel comfortable having your friends visit you while you were in the hospital?^C	75	0.43^A	0.080.78		Q9.6 How often do you think your teen felt comfortable having their friends visit them while they were in the hospital?^C	76	0.56^A	0.35–0.77	n/a
Education supports
Q11.2 How often did your healthcare practitioners help you to keep up with schoolwork while in hospital?^C	83	0.18^A	-0.21–0.58		Q12.2 How often did your teen's healthcare practitioners help them to keep up with schoolwork while in hospital?^C	86	0.50^A	0.10–0.89	n/a
Q11.3 How often did your healthcare practitioners ask if you required extra services for schoolwork related to your injures (i.e. someone to write for you, extra time on tests)?^C	78	0.33^A	-0.02–0.69		Q12.3 How often did your teen's healthcare practitioners ask if they required supplemental services for schoolwork related to their injuries(i.e. someone to write for them, extra time on tests)?^C	81	0.51^A	0.16–0.86	n/a
Family accommodation
Q7.1 During your stay in hospital, were accommodations available for one or more of your parents to stay with or near you (e.g. down the hall, a bed in your room)?^C	92	0.47	0.10–0.84		Q8.2 Were accommodations available for you/the teen's caregiver to stay with or near your teen (e.g. down the hall, a bed in your teen's hospital room)?^C	88	0.49	0.30–0.69	n/a
Q7.2 During your stay in hospital, how often did one or more of your parents/caregivers stay overnight with or near you?^C	82	0.80^A	0.64–0.96		Q8.3 During your stay in hospital, did you or another caregiver stay overnight with or near your teen?^C	98	0.93^A	0.83–1.03	n/a
Q10.9 Did you have privacy in your hospital room?^C	69	0.55^A	0.33–0.78		Q11.9 Did you have privacy in your teen's hospital room?^C	59	0.58^A	0.40–0.76
Global rating of in-hospital care
Q12.1 Please provide an overall rating, between 0 and 10, of the hospital care you received for your injury (with 0 being the worst care possible and 10 being the best)?	62	0.55^A	0.36–0.74	0.85	Q13.1 Please provide an overall rating, between 0 and 10, of the hospital care they received for their injury (with 0 being the worst care possible and 10 being the best)?	71	0.60^A	0.37–0.82	0.85
Scheduling follow-ups
Q17.1 After being discharged from the hospital, have you attended an appointment to follow-up about your injuries with… (select all that apply)^C	77	0.69	0.52–0.86		Q18.1 After being discharged from the hospital, did your teen attend any appointments to follow-up about their injuries with… (select all that apply)^C	73	0.65	0.48–0.82	n/a
Q17.2 Have you scheduled or are planning to schedule an appointment to follow-up about your injuries with… (select all that apply)^C	54	0.45	0.27–0.63		Q87 Have you or your teen scheduled or are planning to schedule an appointment to follow-up about their injuries with… (select all that apply) ^C	63	0.40	0.26–0.55	n/a
Q78 Have you had difficulty scheduling an appointment to follow-up about your injuries with… (select all that apply)	87	0.40	-0.02–0.82		Q18.2 Did you have any difficulty scheduling follow-up appointments for your teen when either of you wanted them with… (select all that apply)	80	0.27	-0.01–0.55	n/a
Discharge and post-discharge information and communication
Q13.2 Before leaving the hospital, did your doctors or nurses give you or your parents written instructions on how to care for your injuries after being discharged?^D	79	0.52	0.27–0.77	0.78	Q14.3 Before leaving the hospital, did your teen's doctors or nurses give you or another caregiver written instructions on how to care for their injuries after being discharged?^D	87	0.49	0.10–0.88	0.78
Q13.3 Did the written instructions provided give you enough information to help you take care of your injuries after being discharged?^D	100	1.00			Q14.4 Did the written instructions provided give him/her enough information to help him/her to care for his/her injuries after being discharged?^D	100	1.00		n/a
Q17.5 At your follow-up appointments, did your healthcare practitioners explain the next steps in your recovery from your injury? For example, activities you should or should not do, necessary medications, tests, treatments, or other follow-up appointments?	71	0.23	-0.07–0.53	0.71	Q18.5 At your teen's follow-up appointments, did your healthcare practitioners explain the next steps in your teen's recovery from his/her injury; for example, activities they should or should not do, necessary medications, tests, treatments, or other follow-up appointments?	85	0.39	0.05–0.73	0.71
Q79 At your follow-up appointments, did your healthcare practitioners explain approximately how long it would take you to recover?	76	0.25	-0.04–0.53	0.55	Q88 At your teen's follow-up appointments, did their healthcare practitioners explain approximately how long it would take them to recover?	90	0.71	0.47–0.94	0.55
Q17.6 At your follow-up appointments, how often did your healthcare practitioners explain things about your injuries in a way that you could understand?	76	0.48^A	0.25–0.70	0.69	Q18.6 At your teen's follow-up appointments, how often did your healthcare practitioners explain things about his/her injuries in a way that you and your teen could understand?	88	0.66^A	0.41–0.91	0.69
Q19.1 Overall, how well were you guided through your recovery process by your healthcare providers after being discharged from the hospital (on a scale of zero to ten, zero being poor guidance, ten being excellent guidance)?^C	54	0.56^A	0.37–0.74		Q20.1 Overall, how well were you and your teen guided through the recovery process by his/her healthcare practitioners after being discharged from the hospital on a scale of zero to ten (zero being poor guidance, ten being excellent guidance)?^C	68	0.71^A	0.57–0.85	n/a
Discharge and post-discharge supports
Q16.1 After being discharged from the hospital, did you get all of the support services that you wanted or felt you needed? (for example, home care, social work, or counselling)^C	85	0.38	0.03–0.73		Q17.1 After being discharged from the hospital, did your teen get all of the support services that they wanted or felt they needed? (for example, home care, social work or counselling)^C	78	0.44	0.22–0.65	n/a
Q17.7 At your follow-up appointments, when you or your parents expressed concerns or frustrations, how often did your healthcare practitioners take action to deal with them?^C	55	0.24^A	-0.01–0.48		Q18.7 At your teen's follow-up appointments, when you or your teen expressed concerns or frustrations, how often did his/her healthcare practitioners take action to deal with them?^C	61	0.38^A	0.13–0.62	n/a
Q17.8 At your follow-up appointments, were school attendance and/or performance issues specifically addressed by any of the healthcare practitioners?^C	63	0.15^A	-0.18–0.49		Q18.8 At your teen's follow-up appointments, were school attendance and/or performance issues specifically addressed by any of the healthcare practitioners?^C	71	0.54^A	0.30–0.78	n/a
Q17.9 At your follow-up appointments, how often did your healthcare practitioners ask if you required extra services for schoolwork (i.e. someone to write for you, extra time on tests), related to your injuries?^C	82	0.61^A	0.34–0.89		Q18.9 At your teen's follow-up appointments, how often did your teen's healthcare practitioners ask if they required extra services for schoolwork (i.e. someone to write for them, extra time on tests), related to their injuries?^C	88	0.76^A	0.53–0.98	n/a
Post-discharge pain control
Q15.1After being discharged from the hospital, did you have enough pain medication to control your pain well?	82	0.65	0.42–0.89	0.90	Q16.1 After being discharged from the hospital, did your teen have enough pain medication to control his/her pain well?	83	0.63	0.38–0.88	0.90
Communication with primary care
Q80 Did your family physician, pediatrician or general practitioner receive information from the hospital about your injures, your hospital stay, or the care you would need to continue your recovery?	72	0.61	0.41–0.80	0.87	Q89 Did your teen's family physician, pediatrician, or general practitioner receive information from the hospital about your injures, your hospital stay, or the care you would need to continue your recovery?	73	0.62	0.45–0.80	0.87
Global rating of post-discharge care
Q19.2 On a scale of zero to ten, what is your overall rating of the follow-up care you received after being discharged from the hospital (zero being the worst injury care possible, ten being the best)?	54	0.56 ^A	0.39–0.74		Q20.2 On a scale of zero to ten, please provide an overall rating of the follow-up care your teen received after being discharged from the hospital (zero being the worst injury care possible, ten being the best)?	80	0.76^A	0.62–0.91	n/a
Additional non-PREM questions
Q15.2 After being discharged from the hospital, did you receive a prescription for opioids to control your pain? (Ex. Tramadol, Dilaudid, Ultram, etc.)^C	79	0.72	0.49–0.95		Q16.2 After being discharged from the hospital, did your teen receive a prescription for opioids to control his/her pain? (Ex. Tramadol, Dilaudid, Ultram, etc.)^C	81	0.78	0.56–1.00	n/a
Q15.3 After being discharged from the hospital, did you fill out your prescription for opioids to control your pain? (Ex. Tramadol, Dilaudid, Ultram, etc.)^C	100	1.00			Q16.3 After being discharged from the hospital, did your teen fill out your prescription for opioids to control his/her pain? (Ex. Tramadol, Dilaudid, Ultram, etc.)^C	78	0.71	0.21–1.22	n/a
Q9.1 How did you communicate with your friends during your stay in hospital, the majority of the time?^C	90	0.81	0.63–0.98
					Q8.1 Which best describes the overnight accommodation you used most during your teen's hospital stay?^C	83	0.68	0.48–0.88	n/a

Questions with shaded statistics test as unreliable
^AWeighted Kappa Calculated
^BStatistics in italics represent significant measure of reliability
n/a not applicable
^CAdded question compared to QTAC-PREM SF
^DQuestions were originally a singular question in original QTAC-PREM

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