The nurses represented seven different rheumatology outpatient clinics in Norway, both small and big units, and all informants had a formal local role related to RevNatus. An overview of the results is illustrated in Table 2. The main result was that the nurses experienced an increase in knowledge about pregnancy and rheumatic diseases as a result of working with the quality register RevNatus. This competence strengthened the quality of the nurses’ consultations with the women, while they also discovered that the ‘register form’ was a useful template to better structure the content in the consultations. The analyses further showed that the nurses took the main responsibility for making sure that necessary data were registered in RevNatus. Thus, more collaboration and better teamwork between the nurses and rheumatologists would improve the organising of the registry work, making it less time-consuming for the nurses who spent time correcting, validating and post-registering missing data. The results are further presented as four main categories with their subcategories below.
Table 2
Research question How do nurses experience working with the quality register RevNatus in addition to clinical patient-care tasks | Final categories | Subcategories |
Increased competence | Increased knowledge about pregnancy and rheumatic diseases Improved consultations Initial training is necessary |
Routines and priorities | Challenging logistics with appointment scheduling Dilemmas in prioritizing between patients Lack of collaboration and teamwork |
Responsibility | Establish a good patient flow Ensure high data quality Remind the doctors |
Increased competence
The informants reflected on several positive effects of working with RevNatus. The registry work resulted in an increased focus on pregnancy and pregnancy-related issues in women with rheumatic diseases in the clinics, and the healthcare providers learned more about pregnancy, rheumatic disease and disease activity measures. The registry work emphasized patients` needs for follow-up during pregnancy as according to national guidelines. The informants said that they gained in-depth knowledge about the interaction between pregnancy and rheumatic diseases, the disease course during and after pregnancy, and pregnancy outcomes. In addition, the informants reported that the registration form was an excellent template for structuring the consultations with the women. The questions in the registration acted as a checklist for important aspects necessary to monitor during pregnancy, such as abnormal blood tests, pain, fatigue and symptoms of increased disease activity.
I feel that we are contributing to an increase in the clinic’s competence and are raising the awareness of this group of patients with tighter follow-up and that we are getting better training. (Nurse, focus group 2)
The informants further said that their impressions were that the women were satisfied with the follow-up regime. The tight controls made them feel safe, and they were happy to provide data for RevNatus, even if they had to answer several questions about their pregnancy and health status at every visit.
Most of our patients are unsure about what will happen during the pregnancy, so they feel safe with the follow-up. (Nurse, individual interview 2)
Some of the informants said they became very well acquainted with their patients by monitoring the women’s disease activity and health status throughout the pregnancy and first year postpartum. Some of the nurses also gave the women ‘general pregnancy advice’ – e.g., how to ease their pain if they couldn’t use analgesics during pregnancy – in addition to collecting data for RevNatus.
This is the closest I will ever be to my dream of being a midwife! (Nurse, group interview 1)
When the informants were asked about training before they started to work with and register data in RevNatus, they mentioned different kinds of initial training. Some said that their ‘basic’ knowledge about registers was insufficient when they started to register data in RevNatus, but their knowledge improved quickly by ‘learning and doing’. Others felt particularly uncertain about how to correctly enter the variables in RevNatus – e.g., the blood and urine samples –while others were unsure about how to measure ‘disease activity’, how to set a value on ‘damage indexes’ or how to deal with different diagnostic criteria.
It should have been clear in the medical records whether the patients are filling Caspar or other criteria, but I have to try to figure it out for myself. I can't guarantee that it's always right. I'm doing my best. (Nurse focus group 1)
Everyone believed, however, that it was easy to get in touch with the office staff for RevNatus for guidance and support with potential questions.
Sometimes I don't bother looking it up, I call or send an email instead, and get a response straight away. Their availability is very good. (Nurse focus group 1)
Routines and priorities
Many of the informants expressed the feeling that keeping track of the follow-up appointments and obtaining patients’ written consent to participate in RevNatus was challenging, due to the lack of routines governing ‘who is responsible for what’. Since RevNatus is a comprehensive and complex registry that requires knowledge about what data to collect at what time (before, during or after pregnancy?), some informants experienced a shift in personnel as another challenge. The informants thought that the personnel at the clinics were inadequately familiar with RevNatus due to how the clinics organised the RevNatus work. At some clinics, the nurses found it difficult to coordinate appointments according to the recommended follow-ups, often resulting in additional work to control scheduled appointments. To keep track of the logistics, the nurses created their own systems to secure the flow of patients.
It's perhaps the most challenging thing about the job, I think, that I actually have to control that the patients get appointments at the right time even if it is scheduled by the recommendations [and she continues], the logistics of the patients’ appointments are perhaps the most challenging thing, more than the actual registration once they're here. (Nurse individual interview 1)
A mutual challenge experienced by all the informants was lacking routines for how to enrol patients in RevNatus before they become pregnant and getting complete registrations throughout the entire register period. The informants mentioned poor communication between doctors and nurses, insufficient knowledge of RevNatus’ existence among all the healthcare personnel, and not having RevNatus registry work implemented in daily routines as possible reasons for missing enrolment prior to an established pregnancy.
Sometimes, it could take some time. Then when they come to a doctor who knows RevNatus, who asks why they are not in RevNatus, then they include them, but then it is a little late. (Nurse individual interview 1)
The informants said that working with RevNatus by collecting data at the right time, entering the accurate data, collecting patients’ reported data and having the right blood tests taken, was time-consuming. Several of the nurses had established their own control routines to keep track of when to register data in RevNatus, and if a patient did not meet as scheduled, the nurses strived to obtain the necessary information needed for the register.
If they don't live that far away, we ask them to stop by and take the blood tests and talk if they are in town. (Nurse in focus group 1)
When talking about clinical work and collecting data for RevNatus, the informants sometimes saw it as a dilemma that ‘women in remission’ (i.e., with low disease activity) were prioritized in the clinic at the expense of other non-pregnant patients with high disease activity. Some of the clinics prioritized RevNatus and consultations for all the women included in RevNatus independent of ‘remission or not’, while others found it challenging to prioritize consultations for women in remission because of a shortage of available appointments. The head of one of the clinics had decided not to schedule consultations if the patients were in remission. One of the informants also said she thought it was a waste of resources to schedule appointments if the only purpose was to collect data for RevNatus.
If you give the patients an appointment only to register in RevNatus, should you take that assessment and tell the coordinator and constantly push for them to be prioritized? It can be difficult when you know that the resources are limited. (Nurse individual interview 1)
The informants agreed that collecting and entering data in RevNatus was time-consuming in addition to other clinical tasks. Even though the registrations should take place at the same time as the outpatient consultation, several informants experienced that this was not the case. Some clinics prioritised register work because the required extra resources existed, while others did not. On busy clinical days, several of the informants said it was challenging to find enough time to complete the RevNatus forms, for example, to search for correct information in the patient record system and find historical data about medication or diagnosis criteria.
If you have to look in old records for information about disease onset or on what criteria the doctor based the diagnosis, you can spend a whole day searching. (Nurse focus group interview 2)
Taking responsibility
Some of the informants said that they felt an obligation to take the main responsibility for RevNatus because communication within the team about ‘who was responsible for what’ was lacking. Sometimes, the informants had to complete missing registrations, and they found the register’s mandatory variables valuable since they acted as reminders for missing data before closing the register. Often the nurses had to remind the doctors about RevNatus because lacked awareness of the registry and women with a planned pregnancy to consent to the registry.
I feel that the doctors don’t have RevNatus in mind. We have to write notes to remind them before appointments with patients. (Nurse individual interview 2)
The informants said that they prioritised taking time to contribute ‘high quality data’ in RevNatus, even if it was time-consuming and occasionally at the expense of other tasks. The informants therefore spent a lot of time checking for or completing missing data, such as whether lab results were available or not prior to the consultation. Completing data in retrospect could be a source of error if it was done in a rushed manner.
It takes a lot of time to register in RevNatus and when you consider that we spend a lot of time doing that, it is important that the work we do is correct or else it is somehow useless. (Nurse individual interview 4)
The informants also explained that they took responsibility for educating new nurses when there was a shift in key personnel. They felt obligated to train new nurses because sufficient knowledge is necessary for knowing which data to collect, how to make the registrations correct and how to prevent missing data.
We talk together, support and help each other if we encounter something difficult or problematic. (Nurse individual interview 4)