Introduction:
Anti-neutrophil cytoplasmic antibody (ANCA)-associated vasculitis is a rare, chronic, auto-immune condition that can have life-changing impact on patients. Hence, it is paramount to ensure that a holistic, patient centred approach is taken to its management. This QI project aimed to explore the experiences of vasculitis patients during diagnosis, their preferences around ongoing care, as well as understanding the physical, emotional and social impact of living with the disease.
Methods:
A questionnaire with a series of closed and free text qualitative questions was designed and approved for patient dissemination. Data collection was done over a five week period between November and December 2022 in an outpatient clinic setting of a UK tertiary vasculitis centre. Surveys were given in person to patients with in-person clinic appointments, surveys were also posted to all patients who had a virtual appointment within the same specified period. Data was extracted onto Microsoft excel, free text answers were copied verbatim, a narrative synthesis of the qualitative data was conducted to identify common themes.
Results:
A total of 71 survey responses were received, 79% of these were completed in person and 21% were returned in the post following virtual appointments. 88% of respondents felt that they received adequate information at the time of diagnosis and 78% felt emotionally supported. Influencing factors were knowledgeable staff who provided clear explanation of condition and treatment. Delay in diagnosis and lack of mental health support were factors that negatively impacted diagnosis.
66% of respondents preferred in-person appointments, 8% preferred virtual appointments and 24% showed an equal preference. Patients found in-person appointments to be more personable due to improved communication and the opportunity for a physical examination. Of those who showed an equal preference or preference towards virtual appointments, common reasons were convenience and fear of covid transmission in hospital settings.
73% of respondents strongly agreed or agreed that vasculitis had an impact on their physical health, 46% felt it affected their mental health and 56% felt it had an impact on their social life. Fatigue, breathing difficulties and reduced mobility were the most commonly reported physical ailments. Many respondents reported low mood, heightened health anxiety and uncertainty. Patients’ felt socially isolated with friends, family and workplaces struggling to understand vasculitis. Several reported being less sociable post Covid-19 due to fear of mixing with crowds in view of immunocompromising treatment regimens.
Conclusions:
In a period where virtual appointments are increasingly utilised, these findings highlight the importance of continuing to allow provision for in-person appointments. The results demonstrate the degree of impact the condition can have on patients, the importance of clinician’s to be mindful of the patient’s holistic needs, particularly the need for psychological services. Simple steps such as offering an explanation to the patient’s loved ones or workplace can positively improve outcomes. It is also interesting to note the lingering effects of the pandemic– clinicians ought to be considerate of patient’s anxieties surrounding Covid-19 and provide advise and reassurance where needed.
This abstract was previously presented as a poster at UK Kidney Week 2023. I declare that resubmitting the abstract is permitted.
I have no potential conflict of interest to disclose.
I did not use generative AI and AI-assisted technologies in the writing process.