Perspectives of Adult Rheumatologists Regarding Family Planning Counseling and Care: A Qualitative Study

Abstract

Objective:

Little is known about if and how rheumatologists provide family planning counseling and reproductive health care (FPCC) to reproductive-age women with rheumatic diseases. This qualitative study sought to assess rheumatologists’ perspectives, attitudes, and practices regarding FPCC.

Methods:

Semi-structured interviews were conducted with a geographically diverse U.S. sample of rheumatologists (n=12). Interviews were transcribed verbatim, and a code book was inductively developed based on transcript content. Two coders applied the code book to all transcripts, and coding differences were adjudicated to full agreement. The finalized coding was used to conduct a thematic analysis.

Results:

Six themes were identified across interviews. Rheumatologists: 1) feel responsible for providing some FPCC to patients, 2) experience tension between respecting patients’ autonomy and their own anxieties about managing high-risk pregnancies, 3) view patient-initiated conversations as FPCC facilitators, and lack of guidelines and competing clinical priorities as barriers to FPCC, 4) are reluctant to prescribe contraception, 5) desire greater access to resources to help guide FPCC, and 6) recognize the benefits of multidisciplinary collaboration with gynecologists.

Conclusion:

Rheumatologists feel a sense of responsibility to provide some aspects of FPCC to reproductive-age female patients. However, their own apprehensions about managing complicated pregnancies may negatively influence how they advise patients about pregnancy planning or avoidance. Rheumatologists do not prescribe contraception but rarely refer patients to gynecologists for contraceptive care. Future work should focus on eliminating barriers and identifying solutions that support rheumatologists’ efforts to provide high-quality FPCC to patients.

Introduction

Many women with rheumatic diseases are diagnosed during their reproductive years. Advances in diagnosis and treatment have enabled many of these women to live longer and healthier lives, and therefore to consider the potential for pregnancy and childrearing [1]. However, while healthy pregnancies are more achievable, the pregnancies of many women with rheumatic diseases are high-risk, as there may be a greater likelihood of adverse maternal and/or fetal outcomes, particularly among those women who have active rheumatic disease and/or who use fetotoxic anti-rheumatic drugs at the time of conception [2–6].

The American College of Rheumatology (ACR) and European League Against Rheumatism (EULAR) recommend that all reproductive-age female patients with rheumatic diseases receive family planning counseling and reproductive health care (FPCC) in order to optimize their pregnancy, maternal, fetal, and overall health outcomes [7, 8]. FPCC may help providers to: 1) clarify patients’ reproductive goals, 2) to provide contraception and/or explore perspectives about abortion among women who wish to avoid pregnancy or childbearing, 3) provide preconception care for women who desire pregnancy, that is, optimizing their medical conditions, ensuring the compatibility of their medications with pregnancy, screening for additional risk factors (e.g., tobacco use), and providing folic acid or maternal vaccinations [9–11].

Rheumatologists’ specific roles and responsibilities regarding FPCC remain undefined, although limited studies suggest that rheumatologists do not routinely engage in FPCC with reproductive-age female patients. For example, young women with rheumatic diseases in several studies reported that they rarely received contraceptive counseling even when starting an anti-rheumatic drug with fetotoxic potential [12, 13]. A survey including rheumatologists indicated that only 32–56% of these physicians had recently discussed family planning with female patients [14]. However, no prior studies to our knowledge have explored rheumatologists’ in-depth perspectives regarding FPCC for young, female patients.

This qualitative study sought to explore rheumatologists’ attitudes and practices related to FPCC, and to highlight factors that they perceived as facilitators or barriers to the provision of FPCC for reproductive-age women.

Materials and Methods

This study was deemed exempt by the University of Pittsburgh Institutional Review Board.

Study Participants

We used referral sampling to recruit adult rheumatologists to participate in this study. Referral sampling was used because of concern over the difficulty of finding rheumatologists willing to participate in an hour-long survey without adequate compensation for their time. Potential participants were ACR members who were identified through investigator networks. Participants were then asked to refer other rheumatologists who might provide unique perspectives to the study. The PI sent up to three individual emails inviting referred rheumatologists to participate in the study. All interviews were completed between October 2017 and January of 2018. Participants were assured of complete confidentiality in their involvement in the study.

Interviews and Data collection

Semi-structured interviews were administered in-person or via telephone, and explored rheumatologists’: 1) attitudes, beliefs, and practices regarding FPCC, 2) barriers and facilitators that affected their provision of FPCC, and 3) information needs and preferences, related to reproductive-age female patients (Appendix). Each rheumatologist reported demographic information about their number of years in practice, practice type (i.e., community versus academic), geographic location, gender, and race/ethnicity. Rheumatologists were also asked to estimate their proportion of reproductive-age female patients.

The P.I. (M.B.T.) conducted all interviews, which were audio-recorded, anonymized, and transcribed verbatim. Interviews were conducted until thematic saturation was reached—i.e., the point at which no new themes were elicited; the interviewer perceived that this occurred after the tenth interview based on the fact that she did not hear new information from interviews, suggesting that the final sample of 12 was sufficient for capturing a wide range of perspectives [15].

Data Analysis

Transcripts were entered into ATLAS.ti software (Scientific Software Development, Berlin) to facilitate coding. Our approach to coding and analysis was designed to involve considerable investigator triangulation through the use of multiple coders, and the review of coding and the resulting thematic analysis by multiple team members. Interview transcripts were reviewed by an experienced qualitative analyst (M.H.’s research assistant), who generated a codebook using an inductive process known as “editing,” in which “the interpreter engages the text naively, without a [coding] template” [16]. The codebook was reviewed by other members of the research team (M.H. and M.B.T.) to ensure that the codes included barriers and facilitators to reproductive healthcare, and that code definitions were sufficiently clear. Involvement of several investigators involved in codebook development facilitated investigator triangulation; an additional benefit of an independent analyst developing the first draft was the potential reduction of bias in codebook development. Two coders (M.H. and a research assistant) then applied the finalized codebook to all transcripts, and met to adjudicate any coding differences to full agreement. The primary coder (M.H.) reviewed the finalized coding to identify overarching themes and subthemes [15, 17]. Themes identified by the coder/analyst were discussed with the PI as a form of investigator triangulation. Quotations from the interviews were selected by the coders and the P.I. to illustrate major themes and sub-themes.

Results

Study Participants

Of 16 rheumatologists who were approached, 12 rheumatologists completed interviews; 3 interviews were conducted in-person, and the remainder were conducted via telephone. Participant characteristics are presented in Table 1. Most participants (n=7) had over 10 years of post-fellowship experience. Three rheumatologists worked for the U.S. Veteran’s Affairs (VA) health care system, albeit in distinct geographic regions; otherwise, rheumatologists practiced in unique health care systems. VA rheumatologists had the fewest female patients overall and had not managed any pregnant patients in the past year.

Table 1.

Participant Characteristics

Characteristic	N (%) or Mean (range)
Years in practice	14.9 (1.5–42)
Region
West/Northwest	2
Midwest	2
East/Northeast	5
South/Southeast	3
Practice type
Community	6
Academic	6
Gender
Female	7
Male	5
Race/ethnicity
Black	4 (33)
Asian	1 (8)
White	6 (50)
Latinx	1 (8)
Estimated percentage of total patients who were reproductive-age and female	10–70%
Number of pregnant patients treated in the past year	0
Veteran’s Administration (VA) rheumatologists (n=3)	4–16
Non-VA rheumatologists

Themes

Six central themes were identified from the interviews. Rheumatologists: 1) feel responsible for providing some FPCC to patients, 2) experience tension between respecting patients’ autonomy and their own anxieties about managing high-risk pregnancies, 3) view patient-initiated conversations as FPCC facilitators, and lack of guidelines and competing clinical priorities as barriers to FPCC, 4) are reluctant to prescribe contraception, 5) desire greater access to resources to help guide FPCC, and 6) recognize the benefits of multidisciplinary collaboration with gynecologists.

Theme 1: Rheumatologists feel responsible for providing limited family planning counseling and care (FPCC) to female patients

All rheumatologists expressed a sense of responsibility to provide some aspects of FPCC to female patients of reproductive age. When asked how they defined FPCC, rheumatologists’ definitions unanimously centered on clarifying women’s pregnancy intentions and timing, educating patients about the associations between their diseases and pregnancy, and optimizing women’s health and anti-rheumatic drug regimens in anticipation of pregnancy. Several rheumatologists also mentioned that they would recommend folic acid supplementation to women contemplating pregnancy. As one participant stated, “We [rheumatologists] need to be involved because some of our medications can’t be used in pregnancy, for obvious reasons. And then in terms of disease activity. If [patients are] under stress because [patient’s] body is not doing well, then the success of the pregnancy is at risk as well. So you want to make sure that [patient’s] disease is under control, that medications would be safe in pregnancy… to make sure you’re giving [patients] the best chance possible to have a successful pregnancy.”

Rheumatologists’ definitions of FPCC generally did not include contraception (Theme 4) or abortion care. When prompted to share if they ever discussed abortion, most expressed discomfort with the topic, as described by one participant, “I would have a tough time discussing abortion with patients… I don’t know that we are necessarily equipped to have that conversation, maybe it’s all a comfort thing. I think that I’m most comfortable discussing medication with my patients.”

Theme 2: Rheumatologists experience a tension between respecting patients’ autonomy and their own anxieties about managing pregnancies with high risk of complications

Most rheumatologists expressed at least some degree of discomfort, fear or anxiety about managing potentially high-risk pregnancies of women with rheumatic diseases. As one rheumatologist stated, “When you asked me about how many pregnant patients that I have had, despite the fact that I feel pretty comfortable discussing contraception, my heart did skip a beat. And I thought, you know, it’s not one of the most pleasant things to deal with in my practice. And it’s because of the fear. There is a fear that, what if something goes wrong?... I think that we are all always concerned that anything could happen, something could go wrong…”

Some rheumatologists volunteered that fear and lack of confidence in managing complex pregnancies might, in turn, influence how they advised patients. For example, an outsized fear of complications might lead a rheumatologist to counsel a patient to avoid pregnancy altogether, even if her risk factors were not absolute contraindications to pregnancy. Several rheumatologists suggested that this “gloom and doom” approach might ultimately fracture the patient-provider relationship, as one participant expressed, “I think we probably overestimate the risks of medications and some diseases… and sometimes I think that we put pressure on patients to not want to get pregnant. I don’t think it’s on purpose, but I think it’s probably just a side effect that sometimes happens. And then in that case, I don’t think they want to talk to us about it.”

Another rheumatologist described how feelings of fear and anxiety fractured the relationship with a newly pregnant patient, “I think I wasn’t able to build up a very good physician-patient relationship, because I think that I got so scared that I kind of blurted out all the data for every single one of the drugs that we were talking about. I think that kind of scared her [patient]. She did not follow up very well… the pregnancy went well, but she never really did the follow-up as well as she should, and I felt it was because she wasn’t trusting my judgment.”

However, despite their apprehensions, rheumatologists generally respected patients’ autonomy to pursue pregnancy. As one rheumatologist described, “Sometimes I don’t think it’s a very good situation when they actually do want to get pregnant. I remember, I had a [patient] who was PL-7 [antibody positive]… and she wanted to get pregnant. She was getting married and there was no stopping the biological clock… I talked to a senior female faculty member. I was like, ‘how do you approach’? And she said, ‘you know if they want to get pregnant, they’re going to, and you need to adjust’… I think you have to care for your patients… and part of their life is reproducing, usually.’”

Theme 3: Facilitators of FPCC include patient-initiated conversations, whereas barriers to FPCC include lack of guidelines and competing clinical priorities

i. Facilitators of FPCC.

Rheumatologists estimated that patients initiated family planning discussions 30–50% of the time, which the rheumatologists appreciated or even preferred. As one rheumatologist explained: “It’s always helpful because with how busy we [rheumatologists] are, [FPCC] may slip and may not be mentioned on the first visit. I usually try to make an effort to always remember that, but if the patient mentions it, it’s one extra reminder… and prevents me from forgetting to talk about it.”

Some rheumatologists felt that female gender of the rheumatologist might also facilitate FPCC conversations, although no rheumatologists considered male gender to be a barrier to FPCC.

ii. Barriers to FPCC.

All rheumatologists mentioned that a lack of evidence-based resources to guide reproductive health care and medication prescribing was a barrier to providing FPCC. As one rheumatologist described, “The medication counseling, I find, is getting increasingly more difficult as things have shifted with concerns with non-steroidal drugs and pregnancy. You know, before the first couple of trimesters, it was thought to be okay…. Now they’ve moved away from ABCDX [FDA Pregnancy Risk Categories], and really made finding answers even more difficult. [I’m] trying to counsel the best I can, but I feel that it’s very compromised at this point of time. There’s a lot of interest in [medication risk]. Unfortunately, a lot of the interest, in my opinion, has made the waters even murkier when you’re trying to explain things to a patient.”

Most rheumatologists expressed that competing priorities during clinic visits limited their ability to provide FPCC. As one rheumatologist stated, “[There is] pressure to see patients in the shortest amount of time… I focus on things that only I as a rheumatologist could focus on— the disease process… there is a tendency to say, ‘well, somebody else will talk to [patients] about contraception, somebody else will talk to them about family planning.’”

Other rheumatologists felt hesitant to initiate family planning discussions with patients who lacked clarity about their reproductive goals. As one provider mentioned, “I want the patient to be upfront with me… If you have a [family planning] conversation with a patient 14 times because every time she comes in she says, ‘You know, I’m thinking about maybe getting pregnant here in another 5 or 6 months,’ I’m thinking, should I think about stopping this or that [medication]? And then nothing happens, and she comes back in six months later and says the same things, and you have that same conversation all over again. You get fatigued by that.”

Theme 4: Rheumatologists are hesitant to prescribe contraception

While several participants reported that they required reproductive-age patients to use contraception if prescribed a fetotoxic anti-rheumatic drug, no rheumatologists in our sample prescribed contraception. Rheumatologists did not feel that they had sufficient knowledge about current contraceptive methods, and some felt unsure about the safety of estrogen-based contraception among women with some rheumatic diseases. All rheumatologists preferred for primary care physicians (PCPs) or gynecologists to prescribe contraception. As one rheumatologist described, “I think we need to ensure [patients] are on proper contraception if they’re on teratogenic medications. I think that’s a responsibility of the rheumatologist. The problem is, there are so many types of birth controls and the intricacies change all the time. And I’m not familiar with that. And we don’t put in IUDs. I think we’re responsible for making sure [patients are] on [contraception], but as a matter as well of primarily managing it? Maybe we should be, but right now I don’t feel I have the training or the education to do that.”

When asked whether they wanted to learn more about birth control methods so they could more confidently counsel patients or prescribe contraception, rheumatologists generally were not interested. As expressed by one rheumatologist, “I think we have enough to worry about and to know about without me starting to know all the nuances of the contraceptives, so I do not.”

Theme 5: Rheumatologists desire greater access to centralized resources to help guide reproductive decision-making

Some rheumatologists felt unclear about the most up-to-date recommendations in medication safety, which affected their confidence about whether they were providing the most accurate advice to patients. One rheumatologist expressed: “The truth is most rheumatologists don’t want to have to deal with [pregnancy]. You know, just go have your baby, come back when you’re done. Just because of the fear of the medications, the toxicity, the side effects, the intrapartum complications, the long-term risks to the baby and mother. So it’s almost like [sigh], do we really have to have this discussion? I think it’s just a matter of education… I think that’s really needed.” Rheumatologists consistently expressed that they wanted access to consensus guidelines that gave them clear recommendations for managing diseases and anti-rheumatic drugs for women before, during, after pregnancy, and through lactation.

Theme 6: Rheumatologists recognize benefits of multidisciplinary collaboration with gynecologists

Most rheumatologists reported that they had an obstetrician-gynecologist with whom they had co-managed at least one patient, occasionally to identify a safe contraceptive method for a patient or to facilitate an infertility evaluation. As one rheumatologist described: “Rheumatology and OB-GYN, it should be a collaboration. I don’t think it’s reasonable to expect family practitioners [to manage reproductive care] when they manage so many diseases and so many medications.” However, most rheumatologists did not formally refer patients to gynecologists or PCPs for reproductive health care, as most expected that reproductive-age patients already had providers to manage their contraception and other family planning needs. One rheumatologist explained, “I haven’t had anyone that I have had to refer.”

Discussion

To our knowledge, this is the first qualitative study exploring attitudes, behaviors and practices of rheumatologists regarding family planning counseling and reproductive health care (FPCC) of women with rheumatic diseases. Rheumatologists felt compelled to provide some aspects of FPCC, which they generally defined as pregnancy-focused—e.g., clarifying a patient’s pregnancy intentions, managing medications in anticipation of and throughout pregnancy, and educating patients about how their anti-rheumatic drugs and disease activity could affect a pregnancy. Rheumatologists acknowledged that their own negative attitudes about managing complicated pregnancies could influence the family planning advice that they gave to patients. Lack of centralized guidelines augmented rheumatologists’ anxieties about managing complex pregnancies and providing medication recommendations. While rheumatologists found gynecologists to be an important resource, they rarely referred patients for gynecologic care.

Rheumatologists infrequently addressed broader aspects of FPCC, such as contraception or abortion counseling, screening for non-rheumatic maternal risk factors (e.g., cigarette smoking), or promoting folic acid supplementation or maternal vaccination [9–11]. Currently, no guidelines exist to clarify the FPCC topics for which rheumatologists should be responsible; thus, the content, quality, and even frequency of these conversations may vary substantially between rheumatologists. It is also unclear if the FPCC delivered by rheumatologists fulfills female patients’ specific reproductive health needs, particularly those patients who wish to avoid pregnancy or childbearing.

Future work should clarify the rheumatologist’s specific roles and responsibilities with regards to FPCC. For now, a starting point could be the recommendation that all rheumatologists initiate FPCC with each of their reproductive-age female patients to better ascertain their reproductive goals and/or referral needs. Specific open-ended phrasing that has been developed for the general population, could help rheumatologists to initiate these conversations as part of routine office workflow (e.g., EMR or intake forms): 1) PATH questions (e.g., Do you think you might like to have (more) children at some point?”), or 2) One Key Question© (“Would you like to become pregnant in the next year?”) [10, 18, 19]. In addition, trained rheumatology nurses have been found to enhance patient satisfaction and care for other aspects of rheumatologic care [20]; they might potentially help to provide aspects of FPCC for patients, including facilitating appropriate referrals for reproductive health care.

Another key finding of our study was that rheumatologists were apprehensive about managing the high-risk pregnancies of women with rheumatic diseases, and several expressed that this fear might lead rheumatologists to inadvertently discourage patients from pursuing pregnancy even when they lacked medical contraindications. Similar anxieties were expressed by U.S. rheumatologists in a separate survey, in which 64% did not feel confident managing a moderate-risk SLE pregnancy, and 70% felt “anxious” or “alarmed” when they had to manage a pregnant patient with SLE [21]. Rheumatologists’ apprehensions about pregnancy may come at the price of the patient-provider relationship, particularly if patients feel that their providers do not respect or support their reproductive goals [22].

An important message to providers and patients is that many women with rheumatic diseases have successful pregnancies and healthy babies [23–27]. Moreover, some women will choose to pursue pregnancy even if they face substantial health risks [28]. Reproduction is an intimate, highly contextualized decision, and respecting women’s autonomy about if or when they would like to have children is an essential approach to patient-centered care. Providers who have open, honest, and judgment-free conversations with patients may be able to anticipate pregnancy among high-risk patients, mitigate health risks as much as possible in advance of pregnancy, and thereby optimize the chances that a woman is in the best health possible before she becomes pregnant [22, 29]. It is important that rheumatologists explore how their own attitudes about pregnancy management influence how they advise patients about their reproductive intentions and goals.

One of the primary reasons why rheumatologists expressed anxiety about managing the pregnancies of women with rheumatic diseases is because centralized guidelines are lacking that clarify how to manage peripartum disease flares or medications during pregnancy and lactation. Reproductive guidelines from the ACR are forthcoming in 2019, and other key resources are currently available to support FPCC [7, 8, 27, 29–33]. Future work should evaluate whether the existence of guidelines helps to reduce rheumatologists’ anxieties about pregnancy, or whether additional resources are needed to support rheumatologists as they provide this care. This is potentially important work, as prior studies in medicine have suggested that it can take years for guidelines to change routine clinical practice [34, 35].

Rheumatologists identified another barrier to FPCC as competing priorities during clinic visits. Ambiguous pregnancy intentions expressed by some patients seemed to complicate care plans, take up more clinic time, and frustrate some providers. However, one-third of all women have ambiguous, complex, and conflicted feelings about pregnancy, and there is no indication that women with rheumatic diseases are less conflicted than other women [36, 37]. Rather, prior work suggests that women with rheumatic diseases may be conflicted about pregnancy because of issues within the rheumatologists’ expertise, such as medication safety [38, 39]. Therefore, rheumatologists who invest the time to explore patients’ ambiguities about pregnancy may ultimately provide women with the information they need to clarify their reproductive goals.

Rheumatologists in our study did not prescribe contraception for patients although they routinely prescribed fetotoxic anti-rheumatic drugs to patients with reproductive potential; most lacked knowledge about current contraceptive methods and expected that the patient’s gynecologist or PCP should be responsible for this aspect of care. However, only 25% of PCPs provide contraceptive care due to a lack of adequate training and skills, and some do not want to manage the gynecologic care of medically complex patients [40, 41]. While gynecologists in one study were significantly more likely to prescribe highly-effective contraception to women with rheumatic diseases, only one third of these patients saw a gynecologist over a 2-year period [42]. Therefore, some patients may not have access to contraception or gynecologic care. Important practice modifications for rheumatologists may be to identify patients’ unmet contraception needs, refer patients to gynecology when appropriate, and identify local rheumatologists to whom they can directly refer patients with urgent contraceptive needs (e.g., women with active rheumatic disease or fetotoxic medication use) [29, 33].

Our study has several limitations. First, while participating rheumatologists had diverse backgrounds and we achieved thematic saturation, it is possible that more themes may have arisen if the study sample was larger or included more male rheumatologists. Selection bias may also have affected some responses, as rheumatologists who entered the study via referral sampling and might have been perceived to have more interest in FPCC than those who did not participate; however, we note that our final sample was diverse in practice characteristics, and number of female reproductive-age patients served annually. Finally, rheumatologists may have tailored their responses to be socially acceptable rather than to be truly reflective of their attitudes and practices, although we attempted to mitigate some of this risk by assuring confidentiality in their participation in the study.

In summary, this qualitative study underscores that rheumatologists are dedicated to providing FPCC to patients and prefer to counsel on a limited range of topics related specifically to diseases, anti-rheumatic drugs, and pregnancy. Important barriers to FPCC included rheumatologists’ anxieties about managing complicated pregnancies, competing priorities in clinic, and lack of knowledge about contraception options. Centralized guidelines and tools that help to support FPCC must be developed to improve care for this high-risk group of women. Finally, while we present only provider perspectives herein, future work must highlight the voices of women with rheumatic diseases, to identify their specific family planning care and counseling needs, preferences, and priorities.

Significance and Innovation.

1. This study identifies specific barriers and facilitators to family planning counseling and reproductive health care (FPCC) that can inform interventions to initiate or improve FPCC for female patients

2. Rheumatologists’ concerns and anxieties regarding managing complicated pregnancies may influence how they counsel patients.

3. Rheumatologists require better guidelines and centralized resources to support female patients’ family planning, pregnancy care and medication management needs during preconception, pregnancy, and lactation.