An overview of the constructs of i-PARIHS and the eight categories identified is outlined in Table 3. An example of the sub-categories of one of the categories is presented in Table 4. The results are presented in detail below, according to the analyses of the three constructs and their categories.
An overview of constructs and categories
Primarily patient-initiated contacts
Complexity of diagnostics and preventive treatment
Nurse-led care; a favourable organisational model when time allows
A low-priority condition with acute attacks
Variations in knowledge about gout and belief in preventive treatment
Context, inner and outer
A holistic but fragmented responsibility with limited resources
Adopting new evidence requires supportive strategies and motivation
Aggravating circumstances related to systems and recommendations
An example of a category and its sub-categories
Complexity of diagnostics and treatment
Clinical practice dependent on physician involved
A diagnostic dilemma
Prevention too time-consuming
Emphasising the importance of treatment depending on patient preferences2
|1 Only expressed by nurses and physicians 2 Only expressed by managers|
Primarily patient-initiated contacts. Gout patients were described as primarily initiating the contact themselves and being treated for pain in the acute situation.
All contacts were initiated by the patient and had an acute character due to pain from a flareup or with another diagnosis in focus. When patients came for an annual follow-up, due to issues such as heart failure or diabetes, gout and its treatment were discussed if the patient brought it up.
Complexity of diagnostics and preventive treatment. Gout care was characterised by complicating factors concerning diagnostics, ULT titration and self-care, and it was a challenge to adapt the care according to patient preferences.
The physicians were described as mainly responsible for gout care, while nurses administered contacts with the patients. The nurses could assign a physician to renew prescriptions for analgesics and ULT and asking patients about the use of pain relief during nursing assessment, but gave no advice. The staff raised concerns regarding difficulties in diagnosing gout. Several factors complicating diagnosis were mentioned, such as when the inflammation engaged the “wrong” joint (not a peripheral one), not being able to perform crystal analysis from the inflamed joint due to a lack of equipment, the urate level occasionally being low during an attack or the fact that the urate level can be high despite the absence of gout. The fact that some drugs can cause or aggravate gout was also mentioned as a complicating circumstance.
Participants mentioned that it could be a problem if a patient used painkillers and tried to self-diagnose to relieve their flareups before seeking help from healthcare. If the patient was already convinced it was gout, this could lead to the physician not putting enough effort into getting the diagnostics correctly performed.
No standardised procedures were described and there was significant variation in the gout care at the different PHC units. Some of the physicians mentioned that the national recommendation for gout treatment was helpful, but some did not know about its existence and others did not use it, referring to the fact that ULT titration was too time consuming.
…no, you start with 100 mg and follow up the with blood samples. It’s tinkering, which is why we don’t do it. Maybe. I mean, even if you’ve read how it should be done… (Focus group 9)
The current practice for prescription and follow-up of ULT ranged between not doing it at all to performing treat-to-target titration. The same variability applied to providing information about the disease and treatment, and with the delivery of lifestyle advice.
Managers addressed the importance of care and treatment in general, and gout care specifically, being dependent on patient preferences through, for instance, patients’ narratives, their expressed needs and seeing patients as the main asset in care and treatment. Treating patients with multi-morbidity was viewed as a core mission for PHC and was seen as challenging when there was a lot to take into account.
Nurse-led care; a favourable organisational model when time allows it. This category represented the conditions for nurse-led gout care.
Participants claimed that nurse-led care usually paid off by generating enhanced quality of care, and strengthened the unit, especially because at times they are dependent on temporary physicians. There were positive experiences of giving extra responsibility for certain tasks to “assistant nurses” if they received adequate support. A problem when transferring responsibility from physicians to nurses was their already limited time, since they had already taken over some other responsibilities, for example blood pressure control and follow-up of diabetes patients. It was also pointed out that, if they had time, not only nurses but also other staff categories could be engaged when new interventions were implemented or care was reorganised.
You can see that the nurse-led receptions often go better. So you reach target values to a greater degree than if a doctor, because….and I think that it’s sort of built into the nature of things. A patient comes to her doctor, and the doctor says, “but now we’ll talk about your gout” [but the patient says] “Yes, but yesterday this happened, which I want to talk about now”. (Focus group 7)
A low-priority condition with acute attacks. This category is related to the way in which participants described gout as minor or having lower priority than other diseases, limited to the episodes of acute attacks and partially stigmatised due to being considered self-inflicted.
Participants explained, in many ways, that gout is seen as a non-severe disease, how it is a problem when the patient is having an attack but not in between. Expressions such as “not important”, “not life-threatening”, “benign trouble”, “infrequent disease” and “subordinate” were used. Some of the participants considered treating gout-related pain to be enough. Other words that were used to describe gout, were “uncomplicated” and “treatable” when patients had the characteristic agonising pain. Symptoms not related to pain were seen as rare. A comparison with having an acute infection was made:
Gout is kind of like having a cold I think, it’s only gout, and then you treat it and so on … (Focus group 2)
Gout being a low-priority condition was also referred to when discussing diagnostics. Several participants claimed that it did not matter whether a correct diagnosis was made; the most important issue was still helping patients to ease their pain.
Sometimes the gout diagnosis is left out but it doesn’t matter when they don’t come back with their problem (Focus group 2)
As a consequence, gout diagnosis was described as sometimes being performed carelessly, for instance on unspecified arthritis.
Participants talked about gout having a history of being a stigmatising welfare disease associated with an unhealthy lifestyle, such as high alcohol consumption and overconsumption of meat. Patients with overweight multi-morbidity and male gender were identified as overrepresented.
Variation in knowledge about gout and belief in preventive treatment. This category sums up participants’ narratives about their inadequate knowledge about and belief in preventive ULT, broad knowledge regarding pain relief during acute gout attacks and inconsistent knowledge about the kinds of support used to treat patients with gout.
Gout was described as both a well-known and an unknown disease, both among healthcare professionals and in society in general. A well-known aspect of gout was the characteristic pain, most often in the big toe. Gout care was perceived as organised around symptom relief, which all participants were knowledgeable about.
There was a lack of consensus among the physicians and nurses about what knowledge support systems to use when in need of more knowledge. The participants named a range of different knowledge support systems, software and websites, but were not unanimous within a specific unit or region. A need for the dissemination of knowledge on gout and its treatment was expressed from a manager’s perspective, and concerns about the difficulties that arise due to the inconsistent use of different knowledge support systems.
The participants’ understanding of gout care was that it has remained unchanged for many decades, a fact that made it less important to put effort into creating better information or looking for up-to-date recommendations.
There was a lack of motivation to prescribe ULT and uncertainty regarding the importance of preventive drug use in between and during gout flareups. Not everyone saw the necessity of motivating patients to use ULT according to recommendations.
neither we nor the patient feel that gout is such a troublesome thing, …thus…no exactly, it’s not so difficult. For the patient, it’s a problem during a flareup, in between you don’t care so much (Focus group 9)
Additional arguments for not prescribing ULT were related to negative side effects, their perception of patients’ unwillingness to take medications and expectations of low compliance. Only a few participants did not consider it difficult to motivate the use of ULT due to the characteristic pain during flareups, the development of tophi and the negative impact on the kidneys.
I’m pretty…I actually do believe in the treatment. I’m not sure if I’m wrong …you can do good…prevent really well. That’s how I usually present it to the patient (Focus group 6)
Some participants described lifestyle guidance as meaningless and not contributing to changes for the individual. Uncertainty concerning lifestyle advice was reported, and explained by the fact that the scientific evidence was not seen as particularly strong.
A holistic but fragmented responsibility with limited resources. This category is about PHC units having too large an assignment in relation to their resources and how this influenced their responsibility for gout care.
Managers and staff agreed that PHC is responsible for gout care. However, there were narratives of a lack of interest and insufficient support from specialist care when consultation was necessary regarding diagnostics or treatment, and the gap between PHC and specialist care was perceived as too wide.
-But gout feels like it’s our duty (participant 1)
-It’s a primary healthcare diagnosis, yes… (participant 2)
-Rheumatologists in this region don’t expect any referrals on gout, I think, it would be someone unique, very hard to treat, or so on …(participant 1) (Focus group 6)
Another aspect that the participants assumed to affect gout care in PHC was the fact that patients with gout have comorbidities that are often treated in a specialist clinic. Having contact with specialist care, for whatever reason, was perceived as sometimes intervening in the healthcare managed by the PHC. Several participants blamed their lack of experience of gout care on the lack of opportunities to follow up their patients. This was partly due to their contacts with other caregivers and left them with little experience of treatment effects, which fragmented the holistic responsibility for gout care.
The fact that person-centred care is a priority at the national level was an incentive for some of the participating managers to support holistic care, as opposed to fragmented, disease-specific care. The priority was to adapt care and treatment to the person, not to a specific diagnosis. One of the managers expressed concern related to organising PHC based on diagnosis, such as gout, fearing that it might lead to reducing the ambition to provide person-centred care.
Person-centred care as I understand it means not to divide...we’ve been focusing a lot on the organisation created from the needs of the workplace and depending on a specific diagnosis. As a consequence, we create downpipes in primary care instead of gutters, where it’s…we don’t have any other problems, only gout (Manager 3)
All PHC units had difficulties with the staffing situation, which caused care management problems of different kinds, including the care of patients with gout. Staff experienced insufficient time to fulfil their responsibilities, such as keeping up to date with scientific knowledge and providing information to patients in a pedagogical manner. Temporary physicians were identified as a possible barrier to the quality of care, sometimes complicating the follow-up for patients with gout and other diseases.
Managers described the number of obligations placed on their PHC units as having a negative impact on quality of care. In addition, economic considerations often became a priority, leading to insufficient and fragmented quality improvement efforts.
Adopting new evidence requires supportive strategies and motivation. This category describes an awareness of what is necessary for successful implementation, including overcoming the lack of common routines regarding both gout care and the implementation of new practices.
The regions’ internal guidelines for gout care were generally considered difficult to find, with a few participants not knowing that they existed, and they were regarded as providing insufficient support for high-quality care. Similarly, it was described as challenging to implement new practices without supporting structures, such as routines that facilitated such processes, leaving the responsibility on each individual to manage change. Both managers and staff confirmed the absence of such routines embracing new guidelines.
Other participants referred to implementation as a complex process using words such as “process oriented” and included leadership, communication at team level and follow-up of the outcomes of potential changes as important components involved in adopting new routines. Activities used to support change processes were workplace meetings, planning days for the entire team, E-mail and the use of digital communication for education, and digital reminders in the medical journal.
Physicians and nurses described their managers as receptive, listening and creative when taking on tasks for improving care. The managers discussed “a spirit of change” and willingness to assimilate new knowledge when describing the culture in their units, which was viewed as supportive in implementation processes.
There is a strong drive among nurses and doctors to absorb new knowledge and new ways of working (Manager 5)
Additional support factors that increased staff motivation to adopt a change were if it improved health among patients and provided care that improved cost-effectiveness.
Factors related to national systems and recommendations. This category deals with the lack of organisational support for booking visits and interpreting laboratory results.
Restrictions on keeping waiting lists in PHC, except for patients with certain diagnoses, was an aggravating circumstance when patients with gout were not allowed on the waiting list. This affected gout care, making it more difficult to treat it according to recommendations in terms of treat-to-target titration. However, all the participants agreed that keeping waiting lists on multiple patient groups would be impossible, and would create an excessive burden for PHC. Only a few patient groups were regularly kept on waiting lists: those with diabetes, chronic obstructive pulmonary disease, heart failure, dementia and children with special needs.
The fact that laboratory reference intervals for urate did not meet gout treatment target levels was mentioned as a possible inhibitory component for initiating preventive ULT. Electronic reminders linked to individuals diagnosed with gout were discussed as a support mechanism that would facilitate the care of patients with gout.