Acta Dermato-Venereologica 99-12CompleteContent | Page 12
CLINICAL REPORT
1091
Perspectives on Living with Chronic Spontaneous Urticaria: From
Onset through Diagnosis and Disease Management in the US*
Stanley GOLDSTEIN 1 , Sanaz EFTEKHARI 2 , Lynda MITCHELL 2# , Tonya A. WINDERS 3 , Leslie KAUFMAN 4 , Debra DUDAS 5 ,
Brandee PAKNIS 6 , Abhishek KAVATI 7 , Virginie DELWART 8 and Howard L. SOFEN 9
1
Allergy and Asthma Care of Long Island, Rockville Centre, NY, 2 Asthma and Allergy Foundation of America, Washington, DC, 3 Allergy &
Asthma Network, Vienna, VA, 4 Flince Research and Design, Brooklyn, NY, 5 Insights and Analytics, 6 Medical Affairs, 7 Health Economics and
Outcomes Research and 8 Advocacy and Strategic Alliance, Novartis Pharmaceuticals Corporation, East Hanover, NJ, and 9 Department of
Medicine/Dermatology, University of California Los Angeles, Los Angeles, CA, USA. # Affiliation at the time the study was conducted.
Chronic spontaneous urticaria is challenging to ma-
nage and substantially affects quality of life. This US,
non-interventional qualitative study examined pa-
tients’ clinical journeys and emotional burden from
symptom onset through disease management. Chronic
spontaneous urticaria patients participated in inter-
views and completed diaries focusing on disease and
treatment history/perspectives, impact on personal/
family life, and relationships with physicians/other
healthcare providers. Physicians were interviewed
about their views on disease management and patient
care. Twenty-five patients, previously or currently re-
ceiving chronic spontaneous urticaria treatment(s),
and 12 physicians participated. Key stages following
symptom onset were identified: Crisis (associated with
feelings of torment/disorientation/shock); Searching
for answers (puzzlement/frustration/anxiety); Diag-
nosis (relief/satisfaction/fear/isolation); and Disease
management (frustration/hope/powerlessness). Fin-
dings revealed patients’ perceptions and experiences
of chronic spontaneous urticaria, including living with
a ‘skinemy’, experiencing their ‘own personal hell’
and feeling ‘like an experiment’. Awareness of unmet
needs in patient care/management identified in this
study may ultimately improve patient support and en-
hance physicians’ understanding of disease burden.
Key words: urticaria; hives; quality of life; urticaria psychology;
qualitative research.
Accepted Aug 8, 2019; E-published Aug 9, 2019
Acta Derm Venereol 2019; 99: 1091–1098.
Corr: Dr Stanley Goldstein, Allergy and Asthma Care of Long Island,
Suite 401, 242 Merrick Road, Rockville Centre, NY 11570, USA. E-mail:
[email protected]
C
hronic spontaneous urticaria (CSU), formerly known
as chronic idiopathic urticaria, is characterized by
the spontaneous occurrence of itchy and sometimes pain-
ful wheals, which may have a burning sensation, and/or
angioedema; and persist for at least 6 weeks without a
specific external trigger (1).
*Data included in this manuscript were originally presented in two ePosters (P162 and P163) at the
American College of Allergy, Asthma & Immunology (ACAAI) Annual Scientific Meeting, November
15–19, 2018, Seattle, WA, USA.
SIGNIFICANCE
• Chronic spontaneous urticaria has a substantial impact
on patients’ quality of life. This study’s findings can help
physicians recognize both the emotional and physical
burden of chronic spontaneous urticaria.
• Patients’ frustration with time taken to reach diagnosis,
and with cycling through different treatments (and
sometimes clinicians) until treatment success achieved,
was commonly experienced. Physicians also experienced
frustration with the patient care pathway.
• Greater support and further education are needed for
patients and physicians.
• Maintaining open channels of communication and engaging
in shared decision-making may benefit the patient–
physician relationship, ease frustration and encourage
a more collaborative approach to long-term disease
management.
CSU is estimated to affect 1.6–3.3 million people in
the USA (2, 3). Disease presentation varies, and it is
difficult to predict how long a patient may be affected
and whether or not they may experience a relapse after
remission (2). The duration of the disease is generally 1–5
years but is likely to be longer in more severe cases (2).
The extent to which patients’ quality of life (QoL) can
be affected by CSU has been demonstrated in numerous
studies (1, 2, 4–8) and goes beyond effects on skin (e.g.
itching), with many patients reporting fatigue, pain, and
sleep disturbances. Patients also experience a substantial
psychological burden; many develop anxiety and depres-
sion after diagnosis, which significantly impacts their
QoL (6, 7, 9, 10). Patients also report dissatisfaction with
their treatment and their relationship with their physician
(5, 8, 11). Highlighting the value of the physician ack-
nowledging the emotional element of CSU, one study
found that patients whose physician had discussed the
emotional impact of the disease with them were signifi-
cantly more satisfied with their treatment and also more
trusting of their physician (8).
CSU also carries a high socioeconomic burden
through a combination of direct healthcare costs and
indirect costs from loss of work productivity. Patients
with CSU experience high levels of work impairment
and are frequent users of healthcare resources (4, 6).
This is an open access article under the CC BY-NC license. www.medicaljournals.se/acta
Journal Compilation © 2019 Acta Dermato-Venereologica.
doi: 10.2340/00015555-3282
Acta Derm Venereol 2019; 99: 1091–1098