Optimal care for rheumatoid arthritis: a focus group study.

Abstract

Our study sought to identify barriers to optimal care for individuals with rheumatoid arthritis (RA). Our study was set in a population with universal access to comprehensive health care in the context of a university hospital health network. Using purposive sampling, we invited RA patients, health professionals, and decision makers from urban and rural regions to participate in structured focus group interviews. Content analysis was performed to determine themes emerging from the data. We identified four general themes. First, initial barriers to optimal care for people begin before primary care contact, at the level of the general population and/or related to primary care access. Second, many factors (at the patient, physician, and system level) influenced how quickly a patient is referred from primary to specialty care. Third, after referral, multiple comanagement issues influence patient outcomes. Fourth, optimizing RA care requires adequate resources. Participants emphasized the need for more education (of patients, of health care providers, and within the general community), better communication between and among patients and health care providers, and more efficient use of existing resources. Our work provides insights regarding barriers to and facilitators of optimal care in RA. Further work with these stakeholder groups in our health care region will examine potential solutions and the feasibility of their implementation. Our work provides an example of how research can assist stakeholder leaders in creating structured and incremental plans to improve health care delivery for persons with chronic diseases like RA.

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ORIGINAL ARTICLE
Optimal care for rheumatoid arthritis: a focus group study
Sasha Bernatsky & Debbie Feldman & Mirella De Civita & Jeannie Haggerty &
Pierre Tousignant & Jean Legaré & Michel Zummer & Tim Meagher & Christopher Mill &
Mark Roper & Jennifer Lee
Received: 2 October 2009 /Accepted: 5 January 2010 /Published online: 3 February 2010
# Clinical Rheumatology 2010
Abstract Our study sought to identify barriers to optimal
care for individuals with rheumatoid arthritis (RA). Our
study was set in a population with universal access to
comprehensive health care in the context of a university
hospital health network. Using purposive sampling, we
invited RA patients, health professionals, and decision
makers from urban and rural regions to participate in
structured focus group interviews. Content analysis was
performed to determine themes emerging from the data. We
identified four general themes. First, initial barriers to
optimal care for people begin before primary care contact,
at the level of the general population and/or related to
primary care access. Second, many factors (at the patient,
physician, and system level) influenced how quickly a
patient is referred from primary to specialty care. Third,
after referral, multiple comanagement issues influence
patient outcomes. Fourth, optimizing RA care requires
adequate resources. Participants emphasized the need for
more education (of patients, of health care providers, and
within the general community), better communication
Electronic supplementary material The online version of this article
(doi:10.1007/s10067-010-1383-9) contains supplementary material,
which is available to authorized users.
S. Bernatsky
Division of Rheumatology,
McGill University Health Centre (MUHC),
Montreal, QC, Canada
S. Bernatsky (*):C. Mill:J. Lee
Division of Clinical Epidemiology, Research Institute
of the McGill University Health Centre (RI-MUHC),
Royal Victoria Hospital,
687 Pine Avenue West, V-Building, Room V2.09,
Montreal, QC H3A 1A1, Canada
e-mail: Sasha.bernatsky@mail.mcgill.ca
D. Feldman
Faculté de Médecine, Ecole de Réadaptation,
Université de Montréal,
Montreal, QC, Canada
D. Feldman:P. Tousignant
Direction de la Santé Publique de Montréal,
Montreal, QC, Canada
M. De Civita
Knowledge Translation Consultancy Services,
Montreal, QC, Canada
J. Haggerty
Université de Sherbrooke,
Sherbrooke, QC, Canada
J. Legaré
Alliance for the Canadian Arthritis Program,
Vancouver, BC, Canada
M. Zummer
Division of Rheumatology, Hôpital Maisonneuve-Rosemont,
Montreal, QC, Canada
T. Meagher
Department of Medicine, McGill University,
Montreal, QC, Canada
M. Roper
Department of Family Medicine, McGill University,
Montreal, QC, Canada
Clin Rheumatol (2010) 29:645–657
DOI 10.1007/s10067-010-1383-9

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between and among patients and health care providers, and
more efficient use of existing resources. Our work provides
insights regarding barriers to and facilitators of optimal care
in RA. Further work with these stakeholder groups in our
health care region will examine potential solutions and the
feasibility of their implementation. Our work provides an
example of how research can assist stakeholder leaders in
creating structured and incremental plans to improve health
care delivery for persons with chronic diseases like RA.
Keywords Arthritis.Focusgroup.Optimalcare.
Rheumatoidarthritis
Rheumatoid arthritis (RA) is a devastating inflammatory
arthritis affecting up to 1% of the developed world. Without
aggressive, early medical treatment with disease-modifying
anti-rheumatic drug (DMARDs), severe damage can occur
[1, 2]. However,manypatientsdonotendupinthistrajectory
early enough to benefit maximally from rheumatology care
[3–5]. Our team’s recent analyses of Quebec administrative
data revealed that of all new-onset or suspected RA cases in
the year 2000, only a small proportion (just over one quarter)
were referred to relevant specialists [4]. Furthermore,
rheumatology referral was delayed especially in patients of
older age, lower socioeconomic status, and low proximity to
specialty care. Our objective was to further characterize
barriers to optimal care in RA using focus groups.
Methodology
Our study took place in Quebec, Canada. In the Canadian
setting, citizens primarily obtain health care through the
public “universal access” system, which theoretically
provides freely accessible primary and specialist care
(inpatient/outpatient) without cost to the patient. Generally,
patients are not registered in health care management
organizations. Rather, patients seek out their own primary
physician, who then supposedly functions as the “gate-
keeper,” arranging referrals to specialists as needed.
Referrals may also be made by one specialist to another.
Patient-initiated specialty consultations are discouraged
through physician reimbursement schedules.
Canada has 1.9 physicians per 1,000 citizens. Most
physicians practice in the public system; a small number
“opt out” of the public system, instead of providing fee-for-
service care as an option for patients seeking treatment. At
the present time, physician extenders (e.g., nurse practi-
tioners) are not a prominent feature of Canada’s public
health system. In many provinces, including Quebec, access
to allied health care workers (for example, physiotherapy,
occupational therapy, psychological counseling, social
work, etc.) is restricted in the public system, requiring a
physician referral to the limited services available at tertiary
care centers. In Quebec, the public health insurance system
includes a drug insurance plan covering drug costs for
individuals ≥65 and younger persons without private
coverage through their employer.
Our activities were conducted within the McGill
Réseau Universitaire Intégré de Santé (RUIS) network,
representing the population served by the McGill
University Health Centre, which encompasses over
1.9 million lives. The McGill RUIS is divided into
regions, with their own health agency (Agence). For
feasibility, we focused on four regions within the McGill
RUIS. We purposively chose two urban regions (Mon-
treal and Montregie) and two areas that were more rural
and/or remote (Outaouais and Abitibi-Témiscamingue).
The framework for our study was the model of an ideal
care trajectory as per Li et al. [6], where a patient moves
from symptom onset to primary care contact, to rheuma-
tology referral, and DMARD initiation, with successful
ongoing treatment (Fig. 1).
We conducted structured focus group interviews, with
purposive samples from our four regions, featuring the
following stakeholder groups:(1) patients; (2) family
physicians; (3) rheumatologists; (4) physical/occupation-
al therapists; and (5) health care decision makers. We
held several 90 min moderator-led focus group sessions
for each of the primary stakeholder groups. Each was
similarly structured, entailing five questions regarding
health care experiences and barriers to or facilitators of
optimal care. To avoid any sense of coercion or
influence, even if unintended, the principal study
investigators did not recruit subjects directly and did
not attend the focus group discussions.
To contact potential participants with RA (consumers),
we sent invitation letters to a random sample of the Quebec
Arthritis Society mailing list and posted notices in
rheumatology clinics within the relevant regions. Eligibility
of potential participants was based on a rheumatologist-
confirmed RA diagnosis and health care contact within the
selected regions of the McGill RUIS. Similarly, we sent
invitations to a random sample (using professional colleges
rosters) of rheumatologists, family physicians, and thera-
pists (physical and occupational therapy) practicing within
the selected regions of the McGill RUIS. Health care
decision-makers were purposively sampled; we invited
representatives from the McGill RUIS full and executive
committees from the directorship of major institutions
within the McGill RUIS and representatives from the health
agencies of our four regions.
We aimed to conduct at least two focus groups for each
stakeholder group, with four to eight participants in each
session. Since the largest population stakeholder groups
646Clin Rheumatol (2010) 29:645–657

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were patients and family physicians, we held four groups
for these participants and two for all others. The role of
nursing was mentioned by all stakeholder groups in
optimizing care. Hence, we added a sixth focus group for
nurses, with purposive sampling.
The focus groups were conducted at various locations
and times to accommodate participants. A professional
moderator (MdC) led the group discussions. Investigators
did not attend. The sessions were recorded and profession-
ally transcribed. Qualitative content analysis of the focus
group transcripts, to identify recurring themes from focus
group discussions, was performed based on grounded
theory. The transcripts were independently coded by the
moderator and the comoderator and the results reviewed to
arrive at a decision regarding major themes arising from the
data. Further methodological details, including the focus
group questions as presented, are available as supplemental
material (ESM 1) in the online version of this journal
article. Results were reviewed in a stakeholder workshop to
confirm their validity.
Institutional review board approval was provided by
McGill University, and written consent was obtained from
all participants. All procedures followed were in accordance
with the ethical standards of the responsible committee on
human experimentation and with the Helsinki Declaration
of 1975, as revised in 1983.
Results
We held four groups for consumers (total N=18, 13
females, average age 58), four groups of family physicians
(N=13, nine males), two groups of rheumatologist (N=14,
11 males), two therapist groups (N=14, all female), two
decision-maker groups (N=9, six males), and one nurses’
group (N=4, all female).
The issues raised across stakeholder groups mapped
into four theme areas. The first was that barriers to
optimal care began before primary care contact at the
level of the general population and/or related to primary
care access (Table 1). The second theme identified
specific factors influencing whether a rheumatology
referral for suspected RA occurs promptly or not (Table 2).
The third theme covered issues related to ongoing RA
management (Table 3), and the final theme described
resources needed (Table 4).
DMARD= Disease-modifying Anti-Rheumatic Drug
I. Symptoms
Joint pain
Joint swelling
Fatigue, stiffness
Initial Presentation
II. Medical Assessment
Appropriate
assessment at point of
first contact
(i.e. primary care
practitioner)
Assessment and Diagnosis
III. Diagnosis
Referral to specialist
Further tests
Rule out other conditions
Decision to start DMARD
therapy
IV. Treatment
DMARD initiation
Follow-up and
monitoring
Specialized services
(i.e. assistive
devices), ideally in
team approach
Disease-modifying Therapy
A. Patient does
not identify
symptoms as
needing
physician
assessment
B. Patient
unable or
unwilling to
access
medical
opinion
C. Primary care
practitioner
does not
recognize
inflammatory
arthritis
D. Practitioner
does not
recognize
need for
specific
diagnosis,
referral and
treatment
E. Hesitancy of
practitioner/patient
to arrange/ attend
specialist visit due to
access issues
(distance, cost);
Waiting list to see
specialist or
referral to non-
relevant specialist.
G: Treatment
insufficient/ patient
adherence is not
optimal/resources
unavailable
F. Patient does
not receive
optimal treatment
due to:
Physician
availability
Long waiting lists
Other access
issues
Patient
preferences
Misinformation
Fig. 1 Trajectory of care (I–IV) and potential breakdowns (A–G) in optimal care for rheumatoid arthritis
Clin Rheumatol (2010) 29:645–657647

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Table 1 Initial barriers to optimal care for persons with rheumatoid arthritis (RA) before primary care contact, at the level of the general population and/or related to primary care access
Subtheme
Persons with RA
Family doctors
Rheumatologists
Therapists
Decision makers
Nurses
a. There is a lack of awareness
in the general population
regarding RA.
[Even in my own
family, there is no
understanding of how serious RA
can be]
[It’s difficult to educate
because the disease is
so rare]
(If only) the public out there
could realize that RA is a
treatable condition.
The knowledge in the
population about what
RA can do is very poor.
There are many who
don’t understand the
significance of their
disease.
The message that people are
responsible for their own
health care maybe gets
through the more education
you have
b. Demographics (e.g., sex,
age, socioeconomic status,
SES) influence the rate at
which persons seek care
Most males, it’s an
effort just to get
them to go tothe doctor.
Patients (of lower SES)
may have so many
problems... it’s more
difficult to (understand)
the problem and realizethat they may have RA.
People of a high socioeconomic
class have better education so
they are likely to know that
(their symptoms) may mean
something, so they come
earlier to see a doctor.
(older patients may) have
this kind of ‘suck it up’
philosophy and don’t seek
help... younger patients if
there’s something the
matter, they seek help
right away...
Women are more health
conscious.
[Women have regular
screening..... that means theysee the family doctor moreregularly...Pap tests...
mammograms...it’s like
an achor.]
[Those with lower SES may
have many chronic socialproblems, creating passivityand delays in seeking care.]
c. Family physicians access is
often a rate-limiting step for
a patient seeking care.
I have to wait in line
like everybody else.
It never used to be
that way. You usedto be able to get in
(to see a physician)
quickly.
[Access to a family
doctor is notalways available.]
They have no general
practitioners to go to.
That’s a huge impediment.
...we don’t have enough
family physicians... It’s a
huge problem. Manypeople don’t have a family
doctor and so they go to an
Emergency Room
(to seek arthritis care).
Access to a general
practitioner is ahuge problem.
[People need to have better
access to family physicians.]
[A patient might call their doctor
and hear the clinic list is full,
come in 3 months.]
Supporting statements are from the transcribed group recordings. Statements in square brackets are translated from French
648Clin Rheumatol (2010) 29:645–657

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Table 2 Many factors influence how quickly a patient is referred from primary to specialty care
Subtheme
Persons with RA
Family doctors
Rheumatologists
Therapists
Decision makers
Nurses
a. If the family doctor
does not recognize the
symptoms of RA, and
referral is delayed,
joint damage is morelikely to occur.
I had to tell my (family) doctor,
I have some kind of severe
arthritis attack, I did not think
it was just the flu.
RA is one of the occasions
where the specialists say
‘I want to see your patient
quickly’ and the delay in
the referral is actually
extremely damaging.
Most (family physicians) have
trouble differentiating... Sothey have a strategy, maybethey try NSAIDs.... If (the
pain) doesn’t go away, then
eventually they have to send
them somewhere...
There are family doctors
who delay referral but
finally send the patient to a rheumatologist.
However there are
others who reactquite well too.
With a disease like RA one
can alter the course of the
disease...before they get
joint damage.
Some (family physicians)
do a few tests and consult
immediately... others waittoo long...
You must get these cases
early.
b. Patient and physician
factors (e.g., sex,
patient socioeconomic
status, rural residence)
affect how quickly a
patient obtains a
referral for specialty
care
Some people with a low SES
feel intimidated by doctors,they lack confidence.
Patients (of lower SES) may
have so many problems...
maybe it’s more difficult
for them to (understand)the problem and realizethat they may have RA.
(Female doctors) are more
ready to admit that maybe
they don’t know exactly
what
it is and they want to get
an opinion.
If you have money, you
have more opportunity
to go and seek out the
referral.
The perception (is) that men
don’t get RA, maybe the
doctors don’t think of that
diagnosis as quickly...
women are more likely to
get RA. So maybe they
thought of that diagnosis
earlier
Those of a high SES have
more knowledge & expectmore. They don’t wait
around. Those with
few resources are at the
mercy of physicians.
People don’t want to travel a
long distance to see a doctor.
(Female doctors) pickup
more of the stress level
of a patient, are more
willing to outsource
care.
[Female family doctors
spend more time with
patients.]
c. Limited availability
of rheumatology
services impairs RA
care delivery
There aren’t enough
specialists to refer
(RA patients) to.
(RA is) an emergency, it’s an
emergency. But there is
nobody to answer to that
emergency.
When you get the referral,
your waiting list is already
quite long...
[Where I am, there is only
1rheumatologist for 5
cities, each city an hour
apart.]
In remote regions, patients
don’t have access to
specialists’
[If you increase awareness,
it won’t do any good
without physicians.]
d. An established
rapport between
physicians is
important
There are some
family doctors who just never refer.
If you have rapport with a
rheumatologist, you’re in
a better position to say,
I’d be much obliged if you
could squeeze this
guy in...
Communication between the
physicians in the communityand specialists... sort of
channels the patients a littleearlier.
[There are some doctors
that understand very
well the importance
of the team.]
If you have a rheumatologist
that you have easy accessto, then you send your
patient to that
rheumatologist.
[If a doctor knows the
rheumatologist & calls tosay, I am pretty sure this is
RA, the rheumatologist
would see the patientwithin a week.]
Supporting statements are from the transcribed group recordings. Statements in square brackets are translated from French
Clin Rheumatol (2010) 29:645–657649