Table Of ContentGuiding principles in
Hidradenitis
Suppurativa (HS)
care
June 2016
GBL/HHS/0616/0728
This study was commissioned and solely funded by AbbVie
AbbVie had no role in the design and conduct of the study, collection,
management, analysis and interpretation of data, or preparation,
review and approval of this report.
© 2016 KPMG LLP, a UK limited liability partnership and a member firm of the KPMG network of independent member
2 firms affiliated with KPMG International Cooperative (“KPMG International”), a Swiss entity. All rights reserved.
How to navigate through the report
Executive Summary Goals Context
Pages 6-18 Pages 19-20 Pages 21-25
Summary of the context, approach and Details on the aims and objectives of the Disease background, epidemiology
key findings from the report project and clinical burden
Approach Findings Appendix
Pages 26-31 Pages 32-59 Pages 60-194
Information on how the research Compilation on the project findings, Detailed case studies from,
was conducted and who was including the patient pathway in HS, and information on the visited
involved key challenges and interventions to centres, including the overview
help address them of the teams, their key
strengths and challenges faced
© 2016 KPMG LLP, a UK limited liability partnership and a member firm of the KPMG network of independent member
3 firms affiliated with KPMG International Cooperative (“KPMG International”), a Swiss entity. All rights reserved.
Foreword
Prof Dr Christos C. Zouboulis
President of the European Hidradenitis
Suppurativa Foundation (EHSF)
Hidradenitis suppurativa / acne inversa
(HS) is a complex chronic disease
which has a serious impact on
patients.
Currently, patients and physicians face significant
challenges including ill-defined and fragmented care
pathways, poor use of medical treatments, late
diagnosis and late referral to specialist centres. There is
wide variation in the quality of care patients receive,
even within the same geographical locations.
This study has been carried out to help understand how
to deliver excellent HS treatment and care for patients
and how to help improve care delivery across
healthcare systems.
A team of clinicians and research scientists visited eight
reference centres. During these visits, the team
observed HS care, collected data and interviewed
healthcare professionals involved in the management of
HS patients.
© 2016 KPMG LLP, a UK limited liability partnership and a member firm of the KPMG network of independent member
4 firms affiliated with KPMG International Cooperative (“KPMG International”), a Swiss entity. All rights reserved.
Contents
1.0 Executive summary 2.0 Goals 3.0 Context
Page 5 Page 19 Page 21
4.0 Approach 5.0 Findings 6.0 Appendices
Page 26 Page 32 Page 60
6.1 Case studies 6.2 Centre details
Page 61 Page 161
© 2016 KPMG LLP, a UK limited liability partnership and a member firm of the KPMG network of independent member
5 firms affiliated with KPMG International Cooperative (“KPMG International”), a Swiss entity. All rights reserved.
1.0 Executive
summary
1.0 Executive summary | 1.1 Goals
1.1 Goals
This report aims to improve the quality of care for HS patients by identifying possible
challenges and interventions in delivering care, raised by HS clinicians and patients.
KPMG’s role in this report
is to collect the views of
HS clinicians and patients
and to collate their opinions
AbbVie sponsored
as a guide for potential KPMG to produce an
solutions for HS centres independent report on
that may be facing similar hidradenitis suppurativa
challenges. (HS) care in collaboration
with the chair of the
European Hidradenitis
Suppurativa Foundation
(EHSF), Prof. Christos
Zouboulis
In doing so, it aims to
identify, document and
share practices to help
increase the awareness The aim of the project is
of HS, promote timely to improve the quality
and accurate diagnosis, and efficiency of care
increase the consistency for HS patients globally
of care and, ultimately,
improve outcomes for
patients with HS
The report collates
information and views
on key initiatives to
improve care from
clinicians and patients in
multiple worldwide
centres
© 2016 KPMG LLP, a UK limited liability partnership and a member firm of the KPMG network of independent member
7 firms affiliated with KPMG International Cooperative (“KPMG International”), a Swiss entity. All rights reserved.
1.0 Executive summary | 1.2 Context
1.2 Context
HS is an inflammatory,
systemic, recurrent skin
disease that usually
presents after puberty
with painful, inflamed
lesions in the apocrine
gland-bearing areas of the
body1
Symptoms range from
single nodules to
HS has several
multiple abscesses
associated
connected by sinus tracts.
comorbidities.
Severe cases may require
surgical intervention
The estimated impact of
The cause of HS is HS overall is 1% of the
unclear, with many adult population
believing it has multiple worldwide, but prevalence
causal factors, namely numbers vary across
genetic, environmental countries1.
and endocrine As such, it is a highly
under-diagnosed
disease
Notes:
1. Zouboulis et al, Hidradenitis Suppurativa / Acne Inversa: criteria for diagnosis, severity assessment, classification and disease
evaluation, 2015
© 2016 KPMG LLP, a UK limited liability partnership and a member firm of the KPMG network of independent member
8 firms affiliated with KPMG International Cooperative (“KPMG International”), a Swiss entity. All rights reserved.
1.0 Executive summary | 1.3 Approach
1.3 Approach
KPMG interviewed a range of HS experts and clinicians across 8 centres. This
report collates the information and views shared by these experts and
highlights interventions to improve HS care raised during the interviews.
Note: the interventions identified are not considered to be exhaustive of best practice, but simply represent those identifie d from our data collection
The EHSF Centres were KPMG engaged KPMG gathered Findings were
president and picked to represent a with a range of views in key collated into a
members selected variety of stakeholders areas: report which
centres around geographies, including challenges, was reviewed by
the world to healthcare systems, dermatologists, interventions to the
participate care settings and surgeons, specialist address them, participating
in this project different nurses and patient networks, patient– centres and
access to specialties organisations centricity and their lead KOL to
benefit creation ensure the validity
Canada Canada France Denmark
TORONTO ST. JOHN’S LYON ROSKILDE
Sunnybrook NewLab Medical Clinique Val Roskilde Sygehus
Medical Centre Research d’Ouest March 2016
February 2016 February 2016 March 2016
Spain Germany Italy UAE
Valencia DESSAU PISA DUBAI
Hospital Manises Städtisches Ospedale Santa Rashid Hospital
February 2016 Klinikum Chiara May 2016
March 2016 May 2016
© 2016 KPMG LLP, a UK limited liability partnership and a member firm of the KPMG network of independent member
9 firms affiliated with KPMG International Cooperative (“KPMG International”), a Swiss entity. All rights reserved.
1.0 Executive summary | 1.4 Findings
1.4 Findings - chalenges
Through our 8 centre visits (and detailed case studies) interviewees identified a number
of challenges faced in their respective centres, of which we have captured below:
First symptoms
– Delayed presentation to clinicians.
– Patients discouraged when presenting with initial symptoms.
Diagnosis
– Low clinician awareness causing delays in diagnosis, and mis-diagnosis.
Referral
– Low clinician awareness causing lack of, and mis-directed referrals.
– Delayed or limited patient information transfer.
– Clinician reluctance to accept HS referrals.
Treatment
– Difficulty in accurately identifying disease extent.
– Multiple patient needs / high comorbidity.
– Variable quality of treatment between countries.
– Variable funding for biologics, surgery and follow-up care across regions and payors.
– Low patient concurrence with treatment plans, including lifestyle change plans.
– Lack of robust, standardised outcome measures.
Follow up and ongoing
– Heavy time burden on patient.
– Clinician capacity affected by follow-up demand.
– Undetected symptom deterioration.
– Physical, psychological and financial strain on patients.
– Limited understanding of disease mechanism.
– Professional siloes.
© 2016 KPMG LLP, a UK limited liability partnership and a member firm of the KPMG network of independent member
10 firms affiliated with KPMG International Cooperative (“KPMG International”), a Swiss entity. All rights reserved.
