Presented at Fall Clinical Dermatology | Las Vegas, Nevada | October 18–21, 2018. Previously presented at The 5th World Psoriasis and Psoriatic Arthritis Conference 2018

Figure 1.  Did you discuss family planning with  
your HCP?

A Comprehensive Survey Assessing the Family Planning Needs of  
Women with Psoriasis
M. Lebwohl,1 M. Siegel,2 L. Shankle,2 L. Pisenti,3 M. Yassine,4 A. S. Van Voorhees4

1Icahn School of Medicine at Mount Sinai, NY; 2National Psoriasis Foundation, Portland, OR; 3UCB Pharma, Smyrna, GA; 4Eastern Virginia Medical School, Norfolk, VA

BACKGROUND
• Psoriasis (PSO) is an immune-mediated inflammatory disease, affecting 

around 3% of adults in the United States1,2 and 2–6% in Europe.3 

• The onset, diagnosis and treatment of PSO in women often overlaps 
with their peak reproductive years.4

• Family planning is challenging for patients in terms of balancing their 
own health with the health of their baby.

 – “…being pregnant completely flared up that would not be fun…. But if 
I were to have a child, it would be my one shot. I couldn’t see myself 
doing anything to hurt that one chance...” – Patient with PSO, focus 
group conducted by the National Psoriasis Foundation (NPF) 

• Data on patients’ family planning experiences are needed to optimize 
PSO management.

METHODS 
• We conducted a survey of women of childbearing potential to 

understand their experiences, concerns and unmet needs with regard 
to family planning.

• Eligible patients were aged 18–45, diagnosed with PSO (including 
patients with psoriatic arthritis).

• Patients were invited to complete a web-based survey on 
SurveyGizmo®, disseminated using e-blasts (the NPF, Advance E-News 
and TalkPsoriasis.org mailing lists) and social media (Facebook 
and Twitter).

• The survey included questions on patients’ experience, concerns and 
educational needs, and were informed by the findings of focus groups 
and interviews of patients and their partners conducted by the NPF.

• Responses to the survey were collected Dec 2017–Feb 2018.

RESULTS
Patients
• 141 patients completed the survey: 65% were currently, or in the future 

would be, trying to conceive, 6% were currently pregnant, and 43% 
had given birth in the last 5 years (Table 1). 

Family Planning 
• Figure 1 shows the proportion of patients who discussed family 

planning with their healthcare providers (HCPs). 

• This family planning discussion was initiated by the PSO HCP in just 
7.4% of cases (Figure 2).

• Many patients did not inform their HCP of their pregnancy right away, 
and many did not inform their HCP at all (Figure 3). 

• Patients mostly used the internet, the NPF and their obstetrician/
gynecologist or midwife for family planning information (Table 2). 

• Flare management and the safety of medications during pregnancy were 
commonly identified by patients as unmet educational needs (Table 2). 

Treatment During and After Pregnancy
• Most patients stopped treatment for PSO during pregnancy (Figure 4). 

• While many patients who stopped treatment experienced a worsening 
in the severity of their psoriatic disease (Figure 4), only 33% of those 
who had given birth in the last 5 years had a plan for what to do if they 
experienced a flare during pregnancy. 

OBJECTIVE
• To evaluate the experience, concerns and family planning 

needs of women of childbearing potential with psoriasis.

Figure 2.  Who initiated the family planning 
conversation you had with your PSO 
treatment provider?

HCP: healthcare provider; OB/GYN: HCP from obstetrics and gynecology; 
PsA: psoriatic arthritis; PSO: psoriasis.

Given birth 
in the last 5 
years (n=61)

Currently 
pregnant 

(n=8)

Trying to 
conceive 

(n=91)

Age (years), mean 36 34 35
Have you EVER been diagnosed by a HCP with PSO, PsA or both?,  
% respondents
PSO only 70.5 62.5 18.7
PSO and PsA 29.5 37.5 81.3
Do you currently have..., % respondents
No or very little PSO 14.8 25.0 2.2
Only a few patches (1–2% BSA) 21.3 25.0 11.0
Scattered patches (3–4% BSA) 29.5 37.5 64.8
Scattered patches (5–10% BSA) 21.3 0 18.7
Extensive/very extensive (>10% BSA) 13.1 12.5 3.3
Generally, what type of treatment are you on?, % respondents
Biologics 49.2 25.0 57.8
Phototherapy 9.8 12.5 48.2
Topical medications 42.6 50.0 47.0
Systemic medications 11.5 12.5 43.4
Over-the-counter products 34.4 37.5 22.9

BSA: Body surface area affected by psoriasis; HCP: healthcare provider; PsA: psoriatic arthritis; 
PSO: psoriasis.

Table 1.  Disease and treatment characteristics Table 2.  Family planning information and resources used or desired by patients 

Figure 3.  How long after you found out you were pregnant did you inform your PSO/PsA treatment provider?

Figure 4.  Stopping treatment for PSO/PsA while preparing for pregnancy for patients who had given birth in the 
last 5 years

HCP: healthcare provider; OB/GYN: HCP from obstetrics and gynecology; PsA: psoriatic arthritis; PSO: psoriasis.

CONCLUSIONS
• Many women of childbearing potential with psoriatic disease 

take systemic medications. However, many patients delayed 
or failed to inform their PSO/PsA HCP of their pregnancy, and 
family planning discussions were rarely initiated by the HCP.

• HCPs should prioritize discussing family planning, and plan 
treatment around/during pregnancy. 

• The unmet educational needs of women of childbearing 
potential with PSO/PsA included the impact of treatment on 
their baby, and flare management during pregnancy.

• The relatively few respondents who were currently pregnant 
made capturing their experiences difficult.

The HCP 
treating my PSO 
and/or PsA: 7.4%

I did: 50.0%

My partner 
did: 41.0%

My OB/GYN or 
Midwife: 1.6%

3%

Trying to conceive (n=91)Currently pregnant (n=8)

Given birth in the last 5 years (n=61)

0 908070605040302010 100

No, I did not discuss family 
planning with my HCP

No, my pregnancy was 
unplanned

Yes, with my dermatologist 
and/or rheumatologist

Yes, with my OB/GYN 
and/or midwife

Proportion of patients (%)

79%

25%

25%

25%

25%

1%

13%

8%

67%

53%

30%

Within 1 month

Right away

Within 3 months

Within 6 months

I did not discuss my pregnancy

Other

Currently pregnant (n=8)

0 908070605040302010 100

Given birth in the last 5 years (n=61)

Proportion of patients (%)

25% 25% 37.5% 12.5%

42.6% 13.1% 16.4%
3.3%

19.7%
4.9%

0 908070605040302010 100

Proportion of patients (%)What did you decide to do regarding treatment for your psoriasis 
and/or psoriatic arthritis during pregnancy? (n=61)

What happened to the severity of your psoriasis?

Did you and your HCP talk about when you would restart?

If you stopped treatment (n=40): Why did you stop treatment?

Stop treatment 66%
Change/stay on treatment 30%

I was worried about treatment harming the fetus 78%
I was worried about the negative side e�ects of the treatment on my fertility 38%

Lack of information regarding treatment compatibility with pregnancy 33%

Worsened 43%
Stayed the same 33%

Improved 25%

Yes: Dermatologist/Rheumatologist 60%
Yes: OB/GYN or midwife 28%

No 30%

Immediately post-partum 22%
17%Within 4 weeks of childbirth

26%Within 6 months of childbirth

When were you advised to restart?If yes  (n=23):

Upon experiencing post-partum flare 22%

SUMMARY

Women of childbearing potential with psoriatic disease were surveyed to assess their family planning needs. 

of patients delayed informing their PSO/PsA treatment 
provider of their pregnancy. 20% did not tell them at all

of conversations were initiated by the HCP

of patients trying to conceive 
were taking systemic medications

43%

33%
7%

of patients discussed family 
planning with their PSO/PsA 
treatment provider, but only

68%
of mothers stopping treatment 

during pregnancy are advised to 
wait until they experienced 
a post-partum flare before 

restarting treatment

22%

These results show that healthcare providers should prioritize family planning discussions and 
tailor treatment plans to the needs of women of childbearing potential. 

HCP: healthcare provider; OB/GYN: HCP from obstetrics and gynecology.

References: 1. Rachakonda et al. J Am Acad Dermatol. 2014;70:512–6;  
2. Kurd et al. J Am Acad Dermatol. 2009;60:218–24; 3. Danielsen et al. Br J Dermatol. 
2013;168:1303–10; 4. Farber et al. Dermatologica. 1974;148:1–18.

Author Contributions: Substantial contributions to study conception/
design, or acquisition/analysis/interpretation of data: ML, MS, LS, LP, MY, ASVV; Drafting 
of the publication, or revising it critically for important intellectual content: ML, MS, LS, 
LP, MY, ASVV; Final approval of the publication: ML, MS, LS, LP, MY, ASVV.

Author Disclosures: ML: Employee of Mount Sinai which receives research 
funds from: Abbvie, Amgen, Boehringer Ingelheim, Celgene, Eli Lilly, Janssen/Johnson 
& Johnson, Kadmon, Medimmune/Astra Zeneca, Novartis, Pfizer, Valeant and ViDac. 
Also a consultant for Allergan, Aqua Leo-pharma, and Promius. MS, LS: Employee of 
National Psoriasis Foundation. The National Psoriasis Foundation receives unrestricted 
financial support from AbbVie, Amgen, Boehringer Ingleheim, Celgene, Dermira, Lilly, 
Janssen Biotech, Novartis, Ortho Dermatologics, Pfizer, Sandoz, Strata, Taro and UCB. 
LP, MY: Employees of UCB Pharma. ASVV: Consultant for: Dermira, Novartis, Celgene, 
AbbVie; board member of Dermira, Novartis, Celgene, AbbVie, Allergan, Derm Tech, 
Valeant, WebMD; ex-spouse pension: Merck.

Acknowledgements: This study was funded by UCB Pharma. The survey 
was conducted by the National Psoriasis Foundation. We thank the patients who 
contributed to this study. The authors acknowledge Lisa Pisenti, PharmD, UCB Pharma, 
Georgia USA, for publication coordination, and Hinal Tanna, PhD, Costello Medical, 
Cambridge UK, for medical writing and editorial assistance. All costs associated with 
development of this poster were funded by UCB Pharma.

Given birth in the last 5 
years (n=61)

Currently pregnant 
(n=8)

Trying to conceive 
(n=91)

While preparing for pregnancy, where do you/did you get your information about family planning as it relates to your psoriasis and/or psoriatic 
arthritis?, % respondents
Online source (i.e. WebMD) 45.9 12.5 80.2
National Psoriasis Foundation 42.6 50.0 78.0
Internet forums/ chat rooms 34.4 50.0 49.5
OB/GYN or Midwife 36.1 25.0 52.7
HCP for psoriatic disease 55.7 25.0 28.6
Family and/or friends 6.6 25.0 37.4
What type(s) of additional information do you/did you want related to family planning and psoriasis and/or psoriatic arthritis?, % respondents
How to manage a flare during pregnancy 60.7 62.5 62.6
Safety of medications during pregnancy 77.0 50.0 38.5
How the disease could affect the developing fetus 41.0 62.5 64.8
How disease is genetically passed/relative risk 57.4 25.0 51.6
What other resources would be most helpful to you related to psoriatic disease and family planning?, % respondents
Internet resources that specifically address pregnancy and  
psoriatic disease

71.7 62.5 47.2

Lactation resources 43.3 50.0 65.2
Mental health resources 38.3 37.5 39.3
Patient support groups 35.0 37.5 53.9

The 3 most selected answers for each question by each subgroup are highlighted in bold. HCP: healthcare provider; OB/GYN: HCP from obstetrics and gynecology.