Insights from rheumatology patients and their healthcare providers reveal similar themes but differing priorities.
Patient-centred care is a key value across our health system – but how do we assess it in practice?
Research shows patients and their healthcare providers view this approach to care differently.
People with rheumatic conditions generally have a life-long relationship with the healthcare system. They need and deserve a system that evolves to deliver the highest quality care.
Therefore, it is essential to regularly ask patients and healthcare providers (HCPs) to share their experiences of care in various settings, assess the outcomes and act on suggestions. Perhaps the main indicator of quality care is the extent to which patient-centred care is practised.
There is no standard definition of patient-centred care, but there are some attributes associated with it, including:
- treating patients with dignity and respect
- adapting treatment to the patient’s preferences and circumstances
- facilitating patient advocacy and empowerment
- looking beyond the patient’s conditions and seeing the whole person.
An Australian study recently published in Rheumatology Advances in Practice explored the experiences and priorities of people attending outpatient rheumatology care and those of HCPs providing that care. Views were captured via several focus groups.
Both groups raised the following core themes of patient-centred care as essential:
- Smooth flow of care processes
- Care coordination
- Individualised care
- Information sharing
- Clinical excellence
- Patient empowerment
- Comprehensive care
Many organisations use key performance indicators (KPIs) to assess how well they are achieving their objectives. The KPIs must be quantifiable or measurable, clear and unambiguous.
The seven themes identified above could be viewed as KPIs. Yet, patients and HCPs interpreted and prioritised the themes differently. If this is so, how can the quality of patient-centred care be accurately assessed?
Top priorities of patients
The study authors noted the top priorities for patients related to the organisation of care, such as waiting times, appointment flexibility and care coordination. However, while HCPs also raised these issues, they focused more on other concerns.
It’s no secret that wait times for patients to get an appointment in Australian public outpatient clinics can extend to many months. In the meantime, patients can experience worsening symptoms or reduced quality of life alongside increased pressures on their mental health.
Delays on the day of the appointment can add to the patient’s negative experience of care. For example, patients in the study felt their time was not valued, yet lack of time was not mentioned in the HCP groups. Of course, such delays also occur in private clinics but generally to a lesser extent.
Many patients in the study said they were frustrated by poor care coordination within the clinics. Their concerns included seeing a different doctor and having to repeat their medical history at each appointment.
CreakyJoints Australia national coordinator Naomi Creek reflected on the significance of these findings.
“The outpatient system has been poor for a long time, with many of the same issues noted in different clinics,” she said.
“Continuity of care is a huge problem. If a patient sees a different doctor each time, the doctors have limited context to evaluate the patient’s symptoms or understand the impact on their daily life. This is not a judgement of the work done by HCPs in these settings but an example of the limitations of public outpatient clinics.”
Top priorities of HCPs
HCPs focused more on non-technical aspects of service provision, such as information sharing and individualisation of care.
In their focus groups, they discussed issues such as multidisciplinary team involvement, patient organisations, and cultural awareness and sensitivity.
The HCPs emphasised the importance of sharing and adapting information to suit the needs and health literacy of each patient. They also stressed seeing patients as more than just their condition, looking at the context and concerns of individual patients as essential to optimising their care outcomes.
The HCPs showed strong positivity and optimism about patient-centred care delivery. They described many instances of patient-centred care practices used in their clinics, yet the study implied patients did not recognise these as examples of patient-centred care.
“Patients need to feel nurtured and heard at each step of their outpatient experience,” said Ms Creek. “With time pressures and continuity of care issues at public hospital clinics, patients might not feel they receive the less tangible forms of care they need and expect. They may come away with a new treatment plan but feel unsatisfied with the consultation experience.”
Study limitations
The authors freely recognised the limitations of this study. For example, the patients were all recruited from public hospital outpatient clinics. Therefore, they likely came from metropolitan areas and (potentially) have lower incomes than their peers who attend private rheumatology practices. Also, only English-speaking patients were recruited. By contrast, the HCPs worked in a mix of public and private settings.
Our reflections on the study
“The issues raised in this study aren’t new,” Ms Creek pointed out. “So, how can patient voices from studies like this be used to improve the system?”
CreakyJoints Australia believes it is important to remember the study specifically gathered the experiences of patients from two public hospitals. Therefore, the issues prioritised by the patient participants do not necessarily reflect those of rheumatology patients across our health system. We would like to see researchers ask the same questions of patients from a broad range of demographic groups but using the same study method.
We noted that mental health was not specifically mentioned in the study apart from one sentence about burden of disease. We were surprised by this and wonder if mental health was discussed in the focus groups. If so, in what context? If not, why not?
To maximise the positives of patient-centred care, we need patients and HCPs to share a standard definition of what it is and how it is assessed (the KPIs). As the authors noted, bridging this divide will require HCPs to incorporate regular patient feedback on non-technical care domains, review blind spots in care provision and adapt practice accordingly.
“Focus groups and studies can reveal important facts about missing elements of patient care,” said Ms Creek. “However, to achieve optimal patient-centred care across the system, patients need to be included in planning and decision-making at every level.
Source:
Madeleine J Bryant, Rebecca Munt, Rachel J Black, Amy Reynolds, Catherine L Hill. Joining forces to understand what matters most: qualitative insights into the patient experience of outpatient rheumatology care. doi.org/10.1093/rap/rkad068
Rheumatology Advances in Practice 2023, online 16 August
Rosemary Ainley wrote this article on behalf of the CreakyJoints Australia team.
CreakyJoints Australia would like to thank Rheumatology Republic for this opportunity to share the patient voice within the Australian rheumatology community.
