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Patients With AxSpA Have Complex Needs, Require Tailored Treatment
New findings add to the understanding of the patient experience in axial spondyloarthritis (axSpA), which can help inform patient-centered clinical care.
In axial spondyloarthritis (axSpA), a patient-centered approach is needed to address the individual journeys and experiences patients go through following diagnosis, a qualitative study published in Scientific Reports found.1
In discussions of personal journeys, patients with axial spondyloarthritis brought up the perceptions of axSpA in social contexts and the impacts of comorbidities. | Image credit: Lila Patel - stock.adobe.com
Patients with axSpA, a chronic rheumatic condition, often experience chronic back pain and may experience stiffness and pain in the back and other joints.2 These and other physical symptoms can impact quality of life significantly, affecting patients in ways that impact employment responsibilities, social interactions, and mental well-being.1
Much of the research on the axSpA journey has focused on diagnostic delays and their effects, the study authors noted. With the new research, they aimed to gain insight into the overall patient journey. The study included semistructured interviews conducted on web-based video calls with 15 adult patients with axSpA at a rheumatology practice in Germany. Patient journey narratives included aspects related to both health care and personal journeys.
“Patient journey mapping activities provide an opportunity to improve people-centered health solutions,” the authors wrote. “Patient journeys assess care processes over time from the patient’s perspective rather than pinpointing specific care events within individual health care facilities.”
Overall, patients described their health care journeys as difficult to navigate and fragmented. Logistical challenges such as long travel distances to specialists and extensive waiting and referral times were noted. Throughout the diagnostic process, symptomatic interventions were seen as inconsistent, short-term solutions.
Care was characterized as more coordinated once a diagnosis of axSpA was determined. However, diagnosis also brought new challenges, such as managing time around treatment. Having a diagnosis also brought relief from previous stigmatization of symptoms and gave patients an explanation for symptoms that had previously been attributed to factors not related to axSpA.
Diagnosis also brought concern for patients, leading to worry about the future with a chronic condition. And treatments such as doctor visits, lifestyle changes, and physiotherapy brought new time management concerns into the mix.
In discussions of personal journeys, patients brought up the perceptions of axSpA in social contexts, the effects of comorbidities, and biographical events that were related to the condition. Patients emphasized that the disease burden was high and that untreated axSpA had wide impacts on daily life due to unpredictable flare-ups and energy levels, for example.
In general, the main takeaway for researchers was the need for a holistic approach to axSpA management that addresses physical comorbidities, physical health, and mental well-being.
The study was subject to limitations characteristic of qualitative research in general. Limitations include subjectivity and the inability to make representative statements about frequency distributions. The authors also noted social desirability status as a potential limitation, as there was a medical student interviewer present. Recall bias also cannot be ruled out, and the study was conducted at a single center in Germany, which may limit its generalizability.
Overall, these findings add to the understanding of the patient experience in axSpA, which can help inform patient-centered clinical care. The authors noted that the study also provides a perspective that can complement future research approaches.
“This study proposes a people-centered perspective on the patient journey in axSpA, emphasizing the interplay of biographies, comorbidities, and social context with health care events,” the authors wrote. “Recognizing these personal factors in clinical practice is encouraged to address complex health needs and tailor treatment to each individual. Further efforts should promote collaboration between medical disciplines and integrate health care and social support at all stages of the axSpA patient journey.”
References
1. Berr K, Ziehfreund S, Welcker, Biedermann T, Zink A. A qualitative exploration of the patient journey in axial spondyloarthritis towards a people-centered understanding. Sci Rep. Published online August 28, 2024. doi:10.1038/s41598-024-70420-8
2. Axial spondyloarthritis. Cleveland Clinic. Updated March 20, 2023. Accessed September 20, 2024. https://my.clevelandclinic.org/health/diseases/24843-axial-spondyloarthritis
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