The quality of care questionnaire: development of a valid measure for persons with inflammatory bowel disease

Figures & data

Figure 1. Questionnaire development and evaluation.

Figure 2. Dimensions important for quality care from the perspective of persons living with IBD. Number of questions in the final version of the QoC-Q in each dimension. Number of questions in the first version of the questionnaire in brackets.

Table 1. First version of the QoCQ.

Dimension of quality of care	Question^a
Trust and respect	1. My caregiver treats me with respect
Trust and respect	2. My caregiver addresses the psychological aspects of my physical issues
Trust and respect	3. My caregiver treats me in a confidence-inspiring manner
Trust and respect	4. My caregiver listens and takes an interest
Trust and respect	5. My caregiver seems to understand how I perceive my situation
Trust and respect	6. My caregiver acknowledges my individual care needs
Access to care	7. I receive my scheduled appointments well in advance
Access to care	8. I receive assistance quickly when needed.
Access to care	9. It is easy to reach the staff at the ward by telephone.
Access to care	10. I receive prescriptions and doctor’s notes when needed.
Access to care	11. I am admitted to scheduled appointments on time
Decision-making	12. I have a clear care plan of my future care
Decision-making	13. I know what my follow-up will consist of
Decision-making	14. I take as much part in my care as I wish
Decision-making	15. I am happy with the decisions made about my care
Continuity of care	16. I am happy with the continuity in my care
Continuity of care	17. In acute situations I see the same caregiver most of the time
Continuity of care	18. I see the same caregiver most of the time at my annual checkups
Information	19. I am happy with the way I receive information about my disease and treatment
Information	20. I am happy with the time point in the trajectory at which I receive information
Information	21. I am happy that I receive intelligible information
Competence	22. My caregiver has the competence I would expect (to my knowledge)
Competence	23. My caregiver makes sure that I receive the best care possible (to my knowledge)
Satisfaction with the care as a whole	Tick the box that best describes your experience of the quality of your care in the past year

^a For each question in version 1, both importance and performance were asked for. The response options to the performance questions in the first version were ‘totally agree’, ‘agree to a great extent’, ‘agree to some extent’ and ‘do not agree’. The response options to the importance questions in the first version were ‘extremely important’, ‘important’, ‘fairly important’ and ‘not important’.

Table 2. Demographic characteristics of the study population and non-responders in phase III, the evaluation of the Quality of Care questionnaire in IBD (QoCQ).

Variable		Respondents n = 294 (%)	Non-respondents n = 306 (%)
Age mean (range)		52 (18–88)	47 (18–93)
Gender	Female	158 (54 %)	153 (50 %)
	Male	136 (46 %)	153 (50 %)
Type of IBD	Ulcerative colitis	143 (48.6 %)	135 (44 %)
	Crohn’s disease	141 (48 %)	171 (56 %)
	Unclassified IBD	10 (3.4 %)
Education	Elementary school or lower	49 (17 %)
	Upper secondary school	116 (39 %)
	University/college	117 (40 %)
	Missing item	12 (4%)
Place of birth	Sweden	265 (90%)
	Other Nordic country	3 (1%)
	Other part of Europe	10 (4%)
	Other part of the world	11 (3%)
	Missing item	5 (1.7%)
Other diseases than IBD	Yes	114 (39%)
	No	174 (59%)
	Missing item	6 (2%)
Time since diagnosis in years, mean, (range)		13 (0-55)

Table 3. Test–retest for the QoCQ.

Question number	Number of responders (Number of non-responders (%))	Two event test (Spearmans rho) Correlation coefficient Sig. (two-tailed)
1.	83 (41%)	0.61^a
2.	81 (42.5%)	0.66^a
3.	82 (42%)	0.68^a
4.	81 (42.5%)	0.52^a
5.	83 (41%)	0.63^a
6.	82 (42%)	0.62^a
7.	83 (41%)	0.64^a
8.	80 (43%)	0.36^a
8.1	27^b	0.56^a
9.	79 (44%)	0.57^a
10.	82 (42%)	0.59^a
11.	82 (42 %)	0.60^a
12.	79 (44 %)	0.58^a
13.	81 (42.5%)	0.68^a
14.	80 (43 %)	0.58^a
15.1	79 (44 %)	0.60^a
15.2	80 (43 %)	0.43^a
15.3	80 (43 %)	0.60^a
15.4	81 (42.5%)	0.53^a
15.5	80 (43 %)	0.56^a
15.6	81 (42.5%)	0.54^a
16	81 (42.5%)	0.67^a

^a Correlation is significant at 0.01 (two-tailed).

^b Number of respondents who were able to answer the question about a care plan (who, according to their knowledge, had a care plan).

Table 4. Test–retest for the QOUTE-IBD importance questions.

Question number	Number of responders (Number of non-responders (%))	Two event test (Spearmans rho) Correlation coefficient Sig. (two-tailed)
1.	82 (42%)	0.69^a
2.	82 (42%)	0.69^a
3.	82 (42%)	0.54^a
4.	79 (44%)	0.54^a
5.	82 (42%)	0.59^a
6.	81 (42.5%)	0.45^a
7.	80 (43%)	0.48^a
8.	79 (44%)	0.57^a
9.	79 (44%)	0.58^a
10.	79 (44%)	0.67^a
11.	81 (42.5%)	0.65^a
12.	80 (43%)	0.73^a
13.	81 (42.5%)	0.48^a
14.	78 (45%)	0.66^a
15.	79 (44%)	0.57^a
16.	80 (43%)	0.55^a
17.	80 (43%)	0.73^a
18.	80 (43%)	0.64^a
19.	80 (43%)	0.59^a
20.	79 (44%)	0.58^a
21.	79 (44%)	0.65^a
22.	80 (43%)	0.60^a
23.	80 (43%)	0.65^a

^a Correlation is significant at 0.01 (two-tailed).

Table 5. Test–retest of the QOUTE-IBD Performance questions.

Item number	Number of responders (Number of non-responders (%))	Two event test (Spearmans rho) Correlation coefficient Sig. (two-tailed)
1.	62 (56%)	0.82^a
2.	61 (57%)	0.74^a
3.	60 (57%)	0.76^a
4.	59 (58%)	0.32^a
5.	60 (57%)	0.26^a
6.	60 (57%)	0.45^a
7.	59 (58%)	0.47^a
8.	52 (63%)	0.63^a
9.	53 (62%)	0.65^a
10.	53 (62%)	0.47^a
11.	61 (57%)	0.53^a
12.	60 (57%)	0.74^a
13.	58 (59%)	0.55^a
14.	61 (57%)	0.63^a
15.	60 (57%)	0.59^a
16.	59 (58%)	0.56^a
17.	56 (60%)	0.60^a
18.	59 (58%)	0.62^a
19.	58 (59%)	0.45^a
20.	54 (62%)	0.59^a
21.	60 (57%)	0.73^a
22.	60 (57%)	0.69^a
23.	60 (57%)	0.53^a

^a Correlation is significant at 0.01 (two-tailed).