BASIC/CLINICAL SCIENCE
Treatment Decision Needs of Psoriasis Patients: Crosssectional Survey
Jerry Tan, Dawn Stacey, Karen Fung, Benjamin Barankin, Robert Bissonnette, Wayne Gulliver, Harvey Lui,
Neil Shear, Christine Jackson, and Xuemao Zhang
Background: Informed shared decision making is a mutual process engaging both doctor and patient and informed by best
medical evidence and patient values and preferences.
Objective: Our aim was to identify the needs of psoriasis patients in decisions on selecting treatment.
Methods: Psoriasis subjects participated in an online survey on decisional role, postdecisional conflict, and treatment awareness.
Results: Of 2,622 people invited to participate, 248 completed surveys. Their most recent treatment decision was either made by
subjects alone (42%) or physicians alone (28%) or was shared (29%). Subjects perceived that their doctors lacked time to stay abreast
of treatments, to provide counseling, and to access appropriate treatments. Deficiencies most frequently identified were information
on options, clarification of values, access to physicians, and decision-making skills. Those with a body surface area (BSA) $ 3% more
frequently indicated that having the skill or ability to make treatment decisions was important.
Limitations: The limitations of this study include sampling, recall, and reporting bias. Percent BSA was not verified.
Conclusions: The multiple deficiencies in support of psoriasis patients in treatment decisions may preclude informed shared
decision making.
Antécédents: La prise de décision commune et éclairée est un processus impliquant le médecin et le patient, le premier se basant
sur les meilleures approches médicales, et le second faisant appel à ses valeurs et à ses préférences.
Objectif: Identifier les besoins des patients atteints de psoriasis en matière de choix de traitement.
Méthodes: Des patients atteints de psoriasis ont participé à une enquête en ligne au sujet du rôle décisionnel, des conflits postdécisionnels, et de leurs connaissances des traitements.
Résultats: Deux mille six cent vingt-deux (2,622) personnes ont été invitées à participer. L’analyse de 248 enquêtes remplies a
révélé que la plus récente décision en matière de traitement a été prise par le patient seul dans 42 % des cas, par le médecin seul dans
28 % des cas, et conjointement dans 29 % des cas. Les répondants ont l’impression que les médecins n’ont pas le temps de rester à
jour des traitements, d’offrir des conseils, et de trouver les traitements les plus adéquats. Les lacunes les plus souvent rapportées
étaient la non-communication des options, le manque de clarification des valeurs, la difficulté d’accéder aux médecins, et le manque
de compétences dans la prise de décision. Les répondants ayant une surface corporelle supérieure à 3 % ont le plus souvent souligné
l’importance de posséder les compétences et les capacités nécessaires à la prise de décision en matière de traitements.
Limites: Les limites de cette étude sont l’échantillonnage, les rappels, et le biais dans l’évaluation des résultats. Également, le
pourcentage de la surface corporelle n’a pas été vérifié.
Conclusions: Le nombre de lacunes au niveau de l’appui offert aux patients atteints de psoriasis dans le processus de prise de
décisions relativement à leur traitement pourrait empêcher une décision commune et éclairée.
From the Department of Medicine, University of Western Ontario,
London, ON; School of Nursing, University of Ottawa, Ottawa, ON;
Department of Mathematics and Statistics, University of Windsor,
Windsor, ON and McLaughlin Centre, University of Ottawa, Ottawa,
ON; Private practice, Toronto, ON; Innovaderm Research, Montreal,
QC; Department of Medicine, Memorial University, St. John’s, NL;
Department of Dermatology, University of British Columbia, Vancouver,
BC; Department of Medicine, University of Toronto, Toronto, ON;
Canadian Skin Patient Alliance, Ottawa, ON; Department of
Mathematics and Statistics, University of Windsor, Windsor, ON.
ECENT ADVANCES in immunobiology have led to
breakthroughs in our understanding of the pathogenesis and treatment of psoriasis. This has been accompanied
R
Presented in part at the annual meeting of the American Academy of
Dermatology, San Francisco, CA, March 2009.
Address reprint requests to : Jerry Tan, MD, FRCPC, 2224 Walker Road,
Suite 300, Windsor, ON N8W 5L7; e-mail: jerrytan@bellnet.ca.
DOI 10.2310/7750.2010.09049
# 2010 Canadian Dermatology Association
Journal of Cutaneous Medicine and Surgery, Vol 14, No 5 (September/October), 2010: pp 233–239
233
234
Tan et al
by an increasing number of treatment options for patients.
In Canada, for example, there are currently nine systemic
treatments beyond phototherapy: four conventional
options (methotrexate, acitretin, cyclosporine, and psoralen plus ultraviolet A) and five biologic options (alefacept,
etanercept, infliximab, adalimumab, and ustekinumab).1
In contrast, there are limited nonsystemic options, such as
topical agents (corticosteroids, calcineurin inhibitors,
retinoids, vitamin D derivatives, coal tar) and phototherapy.
Concomitantly, medical decision making has also
evolved to include patient values and preferences.2
Integration of these elements into decisions is considered
fundamental to patient-centered care.3 However, meeting
patient preferences can be hampered by individual
circumstances and modifiable factors, including unrealistic
expectations, unclear values, and inadequate support.
Decision aids are tools that help engage patients in making
decisions about care, inform them about the evidence of
treatment options, assist in clarifying the relative value
they place on outcomes, and guide them in the process of
decision making.4 They are of particular value when there
are multiple treatment options with different outcomes or
that involve scientific uncertainty. Their use can improve
knowledge, realign expectations, decrease decisional conflict, and increase patient participation in decision
making.4 However, no current decision aids in the
Cochrane inventory address psoriasis.
The criteria for the development of quality decision
aids include an understanding of the needs of potential
users—patients and practitioners.5 Although national and
international surveys indicate that patients in general want
to be actively involved in decision making, little is known
about the decision-making role and needs of psoriasis
patients.6–8 Although specific treatment attributes, such as
adverse effects, time to improvement, and time to relapse,
have been shown to influence the treatment preferences of
psoriasis patients,9 there is a wide variation between
individual valuation of symptom burden, disease severity,
and potential risks of therapy.10 In view of the dearth of
information on the needs of psoriasis patients in treatment
selection, our objective was to evaluate their roles and
perceived deficiencies in the process of decision making.
psoriasis. Of 62,375 respondents, only 2,622 indicated that
they had psoriasis and were provided a weblink to initiate
the online survey. The full survey was further restricted to
only those with psoriasis diagnosed by a physician.
Recruitment was limited to the first 250 participants, with
gender and geographic quotas based on 2006 Canadian
census statistics.11 The study was approved by a central
ethics review board (IRB Services, Aurora, ON).
At the start of the survey, participants were asked to
recall their most recent treatment for psoriasis and to
respond to a series of questions about that decision. Each
respondent completing the survey was awarded 20
incentive points (equivalent to Canadian $2), which could
be exchanged for gift cards and merchandise.
Survey questions were based on the Ottawa Decision
Support Framework,12 in which the key underlying
concept is decisional conflict. Decisional conflict is defined
as personal uncertainty about a course of action and is
influenced by knowledge, clarity of values, and adequacy of
support. The fundamental premise is that minimizing
decisional conflict facilitates patient participation in
decision making. The goal is to achieve higher-quality
decisions, which are defined as being informed, congruent
with patients’ values, and acted upon. A 26-item survey
was developed for individuals with psoriasis that included
questions about psoriasis history, role in the last (ie, most
recent) treatment decision, decisional conflict about
treatment, awareness of treatment options, values associated with outcomes of options, and factors influencing
participation in decision making. Questions were selected
from a standardized decisional needs assessment survey13
and included questions from several valid and/or reliable
instruments such as the adapted Control Preferences
Scale14 and the Decision Regret Scale.15 Level of commitment to the most recent treatment decision was based on
responses to the question ‘‘How committed did you feel
about this last treatment decision?’’ The response range
was not at all, not very, somewhat, and very committed.
The draft survey was circulated to a national panel of six
dermatologists for review, with particular attention to
clarity, absence of bias, comprehensiveness, and relevance.
It was subsequently pilot-tested on four adults with
psoriasis.
Methods
Analysis
This cross-sectional survey was conducted between March
26 and April 4, 2008, by Ipsos-Reid, an independent survey
group. Their Canadian consumer panel was polled by email notification for those interested in a survey on
Participant responses were entered directly into an online
database (using ConfirmIT version 8.0; Confirmit Inc,
Oslo, Norway), downloaded into an Excel file, and
transferred into SPSS software version 16.0 (SPSS Inc,
Decision-Making Needs of Psoriasis Patients
Chicago, IL) for statistical analysis. Participants were
grouped into those with a body surface area (BSA) ,
3% and a BSA $ 3%. Total BSA was estimated by subjects
with the palm of their hand representing 1% BSA.
Spearman correlation and chi-square tests were performed
to evaluate the significance of relationships between
variables. Student t-test was used for comparison of mean
scores. The level of statistical significance was two-sided, p
5 .05.
Results
Of 2,622 individuals in the panel invited to participate, 405
initiated the survey (15%). Of these, 157 were excluded: 51
from individuals not diagnosed with psoriasis by a physician
and 67 that were incomplete. Thirty-nine consecutive
female respondents, identified by initial demographics,
were excluded from completing the full survey owing to
attainment of the female quota. Accordingly, subsequent
analysis was based on 248 surveys.
The mean age of participants was 52 years, and the
mean duration of psoriasis was 16.1 years (Table 1).
Whereas 176 (71%) had previously consulted a dermatologist, only 50 (20%) were being followed by one at the
time of the survey. Seventy-four (30%) reported psoriasis
as moderate or severe at the time of the survey, whereas
176 (70%) indicated that they had moderate or severe
Table 1. Demographic Features of Psoriasis Patients
Demographics
Gender
Male
Female
Age (yr)
18–34
35–54
55+
Duration of psoriasis (yr)
#5
6–10
11–20
21–30
. 30
Current level of severity
Mild
Moderate
$ Severe
BSA 5 body surface area.
Overall
(N 5 248),
n (%)
BSA , 3%
(n 5 181),
n (%)
BSA $ 3%
(n 5 67),
n (%)
115
133
83 (46)
98 (54)
32 (48)
35 (52)
34
91
123
23 (13)
65 (36)
93 (51)
11 (16)
26 (39)
30 (45)
55
31
52
22
21
16
12
15
15
9
71
43
67
37
30
174
63
11
(30)
(17)
(29)
(12)
(12)
145 (80)
32 (18)
4 (2)
(24)
(18)
(22)
(22)
(13)
29 (43)
31 (46)
7 (10)
235
psoriasis within the preceding 5 years. During that period,
BSA involvement was estimated as 0 to 2% in 181 (73%)
and $ 3% in 67 (27%). Of these groups, 18% of the
former and 28% of the latter reported being currently
followed by a dermatologist. The mean BSA was 2.5% for
those self-rated as mild or less, 4.1% for moderate, and
15.5% for severe or extremely severe, indicating a positive
association between BSA and self-rated severity (Spearman
correlation 5 0.42, p , .01). Participants with BSA , 3%
compared to those with BSA $ 3% were similar for
gender, age, and length of time since diagnosis.
Current treatments being used for psoriasis were
prescription topicals in 161 (65%), nonprescription
topicals in 79 (32%), natural sunlight in 79 (32%),
ultraviolet therapy in 10 (4%), oral medications in 5
(2%), and injectables in 2 (1%). Thirty-seven (15%) were
not using any treatments.
Treatment Awareness and Attributes
Treatment awareness was greatest for prescription topical
medications (n 5 228; 92%), over-the-counter topical
products (n 5 181; 73%), and natural sunlight or
phototherapy (n $ 156; $ 59%) (Table 2). Participants
with BSA $ 3% were more likely to be aware of injectable
(12% vs 28%; p 5 .002) and phototherapy options (59% vs
75%; p 5 .020). However, although there was a trend to
greater awareness of oral treatments in those more affected,
the difference was not significant (34% vs 23%; p 5 .059).
Role in Making Most Recent Treatment Decision
Two hundred eight (83%) participants reported having
made a recent psoriasis treatment decision regarding
topical medications and 11 (5%) about phototherapy; 29
(12%) did not recall. This decision was shared with their
physician in 74 (29%), made by themselves in 103 (42%),
and made by their physician in 71 (28%).
Levels of confidence in these decisions were very
confident for 109 (44%), somewhat for 99 (39%), not very
for 27 (11%), and not at all for 13 (6%). A larger
proportion of those who had their decision made by their
physician or who shared in the decision were somewhat or
very confident compared to those who made the decision
solely (Pearson chi-square, p 5 .033).
Decision Regret and Commitment
Over 80% of participants did not regret their decision and
indicated that their choice did not harm them (Table 3).
236
Tan et al
Table 2. Awareness of Treatment Options
Treatment Option
All (N 5 248), n (%)
Prescribed creams, lotions, or gels
OTC topical treatments
Natural sunlight
Phototherapy (light/UV)
Natural health products
Oral medications
Injectable medications
Shampoo
229
184
158
156
71
65
41
5
(92)
(74)
(64)
(63)
(29)
(26)
(17)
(2)
BSA , 3%
(N 5 181), n (%)
167
131
110
106
51
42
22
5
(92)
(72)
(60)
(59)
(28)
(23)
(12)
(3)
BSA $ 3%
(N 5 67), n (%)
62
53
48
50
20
23
19
0
(93)
(79)
(72)
(75)
(30)
(34)
(28)
p Value, Chi-Square
.020
.002
BSA 5 body surface area; OTC 5 over the counter; UV 5 ultraviolet.
However, up to 28% were either neutral or disagreed that
the choice was the right one, that they would choose the
same option again, or that it was a wise decision. No
significant differences in responses were noted between
those with BSA , 3% compared to those with BSA $ 3%.
However, commitment to the last treatment decision
varied, with those with more severe psoriasis (eg, BSA $
3%) being less strongly committed to their treatment
(Table 4).
dermatologists (n 5 155; 89%) or family doctors (n 5 132;
75%), the most common perceived barrier for physician
support was lack of time (Table 6). Specifically, the lack of
time to keep abreast of treatment options (n 5 118; 48%)
and lack of time to provide counseling on decision support
(n 5 102; 41%) by their physicians were reported as
factors hindering decision support. Those with a BSA $
3% were more likely than those with a BSA , 3% to
indicate lack of physician’s ability to access the most
appropriate treatment as a barrier (p 5 .012).
Factors Influencing Decision Making
The most important factors in treatment decisions were
having information on the benefits and risks of treatment
(234; 94%), being clear about what is important (232;
94%), having information about all available treatment
options (222; 90%), having the skill or ability to make
treatment decisions (218; 88%), and having access to the
doctor for discussion (218; 88%).
The most highly ranked factor by importance for
decision making was how well the treatment works (Table
5). Having the skill or ability to make this type of decision
was of greater importance to those with BSA $ 3% (p ,
.001), as was feeling pressure from others to make certain
choices (p 5 .012).
Although 175 (71%) participants considered counseling to be important and preferred that it be delivered by
Discussion
Informed shared decision making is a process by which
decisions are shared by doctor and patient and informed
by best clinical evidence and guided by patient preferences
and values.16 This survey was conducted to evaluate the
decision support needs of psoriasis patients and to inform
the development of appropriate interventions.
The majority of our subjects (71%) took an active role
in decision making, with few deferring it to their
physicians. These findings concur with those of an earlier
study in which only a minority deferred treatment
decisions to their physicians.17 We found that those who
involved their physicians were significantly more likely to
be confident about their selections. Although the majority
desired counseling by physicians, almost half felt that
Table 3. Decision Regret
Item
It was the right decision
I regret the choice that was made
I would go for the same choice if I had to do it over again
The choice did me a lot of harm
The decision was a wise one
Agree, n (%)
186
8
183
8
178
(75)
(3)
(74)
(3)
(72)
Neutral, n (%)
52
41
38
19
58
(21)
(17)
(15)
(8)
(23)
Disagree, n (%)
10
199
27
221
12
(4)
(80)
(11)
(89)
(5)
237
Decision-Making Needs of Psoriasis Patients
Table 4. Level of Commitment to Most Recent Treatment
Decision
Level of Commitment
Very
Somewhat
Not
BSA , 3%
(n 5 181), n (%)
BSA $ 3%
(n 5 67), n (%)
107 (59)
56 (31)
18 (10)
28 (42)
34 (51)
5 (7)
BSA 5 body surface area.
Chi-square test of independence, p 5 .016.
physician support was inadequate owing to time constraints in maintaining knowledge on and proficiency in
treatments and in providing counseling. These deficiencies
were also highlighted by their desire for more information
on treatment options, including their risks and benefits.
When combined with the relative lack of awareness of
options beyond topical treatments, these findings concur
with those of previous studies showing that psoriasis
patients have extensive knowledge gaps in basic aspects of
their condition and its management.18–20 Ultimately,
insufficient knowledge regarding treatments is a barrier
to patient involvement in decision making.17
The relative shortage of dermatologists in the United
States and Canada, increasing demand for their services,
longer waiting times, and relative disincentivization of
cognitive services are such that their provision of
counseling services is not likely to increase. 21,22
Furthermore, previous research indicates that physicians
have limited skills in involving patients in decision
making.23 Potential solutions to these shortcomings
include patient decision aids6 and inclusion of other
health care members as decision facilitators.24 Addressing
knowledge deficits with counseling sessions, educational
tools, and specialized psoriasis education centers can
increase patient knowledge and improve quality of life.25,26
Our survey cohort comprised a greater proportion with
mild severity (71%) compared to those of the National
Psoriasis Foundation (34%) 27 and the European
Federation of Psoriasis Patient Associations (32%).28 As
those surveys were derived from the membership of
psoriasis support groups, our findings may be more
representative of psoriasis in the general population.
Accordingly, our findings may be especially pertinent
given the lesser severity of our cohort and their focus on
topical treatments. It would be anticipated that those
considering systemic options would require greater degrees
of decision support.
We acknowledge the following limitations of this study:
sampling bias (subjects in this group belonged to a survey
panel with access to the Internet), recall bias (for the last
treatment decision), and response bias (diagnosis of
Table 5. Patient Ratings of Factors Influencing Decision Making
Mean Score
Factor
How well the treatment works
How fast the treatment works
Having access to the doctor so that you could have a discussion
Side effects of the medication
How long the treatment effects last
Having information on the benefits and risks of treatments
Having the skill or ability to make this type of treatment decision
Availability of the treatment
Having information about all the available treatment options
Convenience and ease of use of the treatment
Cost
Route of administration (eg, injection, oral topical, light administration)
Being clear about what is important
Time required for the treatment
Having support from others, such as family and friends
Having information about what other patients decide
Feeling pressure from others to make certain choices
BSA , 3%
BSA $ 3%
18.7
8.5
8.2
7.7
7.3
6.2
4.3
6.3
5.3
7.1
5.3
4.0
4.8
3.4
1.8
1.2
0.1
15.5
8.3
8.1
8.0
7.6
7.3
7.2
6.7
6.4
5.6
5.0
4.9
4.6
3.7
1.6
1.0
0.4
BSA 5 body surface area.
Participants were allocated 100 points across each of the following factors (higher scores indicating greater importance) to reflect the importance of each
when making a treatment decision.
238
Tan et al
Table 6. Patient-Perceived Barriers to Physicians Facilitating Decision Support
All
(N 5 248), n (%)
Perceived Barrier
Lack of time to keep up with all the treatment options and their advantages or
disadvantages
Lack of time to provide counseling on decision support
Lack the ability to gain access to the most appropriate treatment
Lack of patient education materials
Lack of physician education/guidance document or materials
Lack of training in supporting patients with being involved in making decisions
BSA , 3%
BSA $ 3%
(N 5 181), n (%) (N 5 67), n (%)
118 (48)
81 (45)
37 (55)
102
84
76
73
64
74
53
56
54
49
28
31
20
19
15
(41)
(34)
(31)
(29)
(26)
(41)
(30)
(30)
(30)
(27)
(42)
(46)
(30)
(28)
(22)
BSA 5 body surface area.
psoriasis based on subject reporting that the condition was
physician diagnosed). Finally, although self-estimation of
BSA (and the cutoff of 3% BSA for mild versus moderatesevere psoriasis) was based on precedent,28,29 this metric
was not independently verified.
Conclusions
Psoriasis patients are actively involved in treatment
decisions and are more confident in their decisions when
their physicians are involved in the process. However,
there are multiple deficiencies in support for psoriasis
patients, including insufficient information on treatment
options, inadequate decision-making skills, and scarcity of
physician time. The development of patient decision aids
and supportive educational resources may assist in
reducing these impediments to informed shared decision
making.
Acknowledgment
Financial disclosure of authors and reviewers: The authors
received an educational grant from Ortho Biotech Canada.
Dr. Tan has served as an advisory board member, clinical
investigator, and speaker and/or received honoraria from
Abbott, Allergan, Amgen-Wyeth, Astellas, Biogen,
Centocor, Fujisawa, Galderma, Isotechnika, JanssenC i l a g, J o h n s o n a n d J o h n s on , L e o , N o va r t i s ,
OrthoBiotech, Pfizer, Schering, and Serono. Prof. Stacey
has received honoraria from Ortho Biotech Canada. Dr.
Gulliver has served as an advisory board member,
investigator, consultant, and speaker for Janssen Ortho/
Ortho Biotech. Dr. Barankin has served as an advisory
board member and speaker and/or received honoraria
from Abbott, Amgen-Wyeth, Astellas, Galderma, Dermik,
Leo Pharmaceuticals, Stiefel, Schering-Plough, and Serono.
Dr. Bissonnette has served as an advisory board member,
investigator, speaker, and/or consultant and received
honoraria and/or grants from Abbott, Amgen-Wyeth,
Astellas Inc, Centocor Inc, EMD Serono, Schering-Plough,
and Janssen Ortho. Dr. Lui has served as an advisory board
member, clinical investigator, and speaker and/or received
honoraria from Abbott, Amgen-Wyeth, Astellas, Biogen,
Johnson and Johnson, LEO Pharma, OrthoBiotech,
Schering, and Serono. Dr. Shear has served as an advisory
board member, clinical investigator, and speaker and/or
received honoraria from Abbott, Amgen-Wyeth, Astellas,
Biogen-IDEC, Centocor, Galderma, Isotechnika, JanssenOrtho, Johnson and Johnson, Leo, Novartis, Pfizer,
Schering-Plough, EMD-Serono, and Merck. Christine
Jackson works for the Canadian Skin Patient Alliance,
which has received funding from Abbott, Amgen-Wyeth,
Galderma, Leo, Janssen-Ortho, Schering-Plough, Bristol
Myers Squibb, EMD Serono, Steifel, and Taro. Mr.
Xuemao Zhang received an honorarium from Ortho
Biotech.
Financial disclosure of reviewers: None reported.
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