409whether they had had blood and urine tests in the past 12 months and understood the
purpose and results of these tests; knowledge and understanding of the medications
prescribed and treatment options; and whether they felt clinic staff were aware of the
latest treatments. The questionnaire also collected basic demographic data about the
type of diabetes, gender, age, postcode, and ethnic group.
A separate tool has been developed for pediatric patients [ 51 ]. This tool includes
questions that cover: whether appointments are delayed; whether they have enough
time with the relevant healthcare professional to discuss any questions or concerns;
timely access to advice; adequate information and knowledge for managing their
condition; access to information about specifi c technologies; whether written infor-
mation was understandable; appropriateness of dietary advice; respect for cultural
and/or religious beliefs; the availability of an interpreter; and whether they would
recommend the clinic to others.
Patient Assessment of Chronic Illness Care (PACIC) is a tool used to evaluate the
chronic care experiences of patients. A study examining the PACIC to improve and
validate its potential to measure the experience of diabetes patients in daily chronic
care practice revealed that the reliability of the PACIC and the extended PACIC
(PACIC+), which also includes team functioning, reliably measures chronic care
experience of patients with diabetes [ 52 ]. The results with PACIC+ are of particular
note given the importance of effective multidisciplinary team functioning in chronic
care management.
PREMs in Rheumatoid Arthritis
Patient experience is not c urrently routinely measured in RA and there is no stan-
dard method of capturing data on the patient experience of care, despite increasing
awareness of its potential value in improving quality of care. Studies have tended to
focus on PROMs [ 16 – 18 , 20 , 53 , 54 ] or patient experience of educational services
for RA [ 55 – 57 ] rather than on the patient experience of care.
Data from one study in nine women who had RA for ≥3 years, and had received
inpatient treatment for ≥5 days within the previous 2 years, revealed that the experi-
ences of patients focused on fi ve themes: uncertainty during fi rst admission, becom-
ing an experienced patient, the positive and negative effects of other patients, the
experience and knowledge of staff, and the loss of privacy [ 58 ].
A PREM questionnaire was developed for 94 patients with RA [ 59 ] (Appendix
1), this was centered around fi ve categories including: (1) journey to diagnosis, (2)
impact of the disease on the patient’s everyday life, (3) knowledge about the dis-
ease, (4) care in the hospital, and (5) patient education and aftercare (including what
to do in case of fl are). It correlated with disease activity, which would indicate it
also had an element of activity measured. It was retested in 184 other patients but no
external validation was performed on the data.
17 PROMs vs. PREMs (Patient-Reported Experience Measures)