10/22/2019 Identifying What Matters to Hysterectomy Patients: Postsurgery Perceptions, Beliefs, and Experiences

J Patient Cent Res Rev. 2018 Spring; 5(2): 167–175. PMCID: PMC5953196
Published online 2018 Apr 26. doi: 10.17294/2330-0698.1581 NIHMSID: NIHMS963414
PMID: 29774227

Identifying What Matters to Hysterectomy Patients: Postsurgery

Perceptions, Beliefs, and Experiences
Andrew S. Bossick, MPH, 1 Roopina Sangha, MD, MPH,1,2 Heather Olden, MPH,1 Gwen L. Alexander, PhD,1
and Ganesa Wegienka, PhD1
1Department of Public Health Sciences, Patient-Engaged Research Center, Henry Ford Health System, Detroit,

MI
2Obstetrics and Gynecology, Henry Ford Health System, Detroit, MI

Corresponding author.
Correspondence: Andrew S. Bossick, MPH, Henry Ford Health System, 1 Ford Place, 5C, Detroit, MI 48202
([email protected])

Copyright © 2018 Aurora Health Care, Inc.

Abstract

Purpose
Hysterectomy is the most common nonobstetrical surgery for women in the United States. Few
investigations comparing hysterectomy surgical approaches include patient-centered outcomes.

Methods
The study was performed at Henry Ford Health System (Detroit, MI) between February 2015 and May
2015. A total of 1,038 eligible women — those 18 to 65 years of age and who had an electronic
medical record-documented Current Procedural Terminology (CPT®) code or an International
Statistical Classification of Diseases, Ninth Edition (ICD-9) code of hysterectomy between December
2012 and December 2014 — were selected and recruited. A question guide was developed to
investigate women’s experiences and feelings about the experience prior and subsequent to their
hysterectomy. Analysis utilized the Framework Method. Study data were collected through structured
focus groups with 24 posthysterectomy women in order to identify patient-centered outcomes to
employ in a subsequent cohort study of hysterectomy surgical approaches. One pilot focus group and 5
additional focus groups were held. Qualitative data analysis, using data from coded transcripts of focus
groups, was used to identify themes.

Results
Focus groups with women who previously had a hysterectomy revealed their pre- and
posthysterectomy perceptions. Responses were grouped into topics of pre- and postsurgical
experiences, and information all women should know. Themes derived from responses: 1) decision-
making; 2) the procedure (surgical experience); 3) recovery; 4) advice to past self; and 5)
recommendations to other women.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5953196/ 1/12
10/22/2019 Identifying What Matters to Hysterectomy Patients: Postsurgery Perceptions, Beliefs, and Experiences

Conclusions
These analyzed data suggest a need for increased education and empowerment in the hysterectomy
decision-making process, along with expanding information given for postoperative expectations and
somatic changes that occur posthysterectomy. Findings about perceptions, beliefs, and attitudes of
women having undergone hysterectomy could support health care providers deliver more patient-
centered care.

Keywords: hysterectomy, patient expectations, focus groups, qualitative data analysis, surgery,
gynecology

Hysterectomy is the most common nonobstetrical surgical procedure for women in the United States.1
While there is a growing number of uterine-sparing approaches for addressing many of the various
indications for this surgery, hysterectomies are likely to remain a common procedure for the
foreseeable future. Surprisingly, despite the high rate of hysterectomy, no evidence-based clinical care
guidelines based on patient-centered outcomes exist. Previous guidelines are based on clinical factors
such as blood loss, length of hospital stay, and complications; however, patient concerns have not been
central to these decisions.

Prior research studies on hysterectomy have used standardized quality-of-life measures, yet this
approach may not necessarily have facilitated guideline development influenced by patient-desired
outcomes.2–4 It is possible that women may have different goals for their surgery than information that
is reflected in standardized quality-of-life assessment. For example, some women might prefer an
“open” hysterectomy in which the incision is made very low beneath the waistline versus having the
appearance of multiple small-port incision scars on the abdomen from a laparoscopic procedure —
even if the laparoscopic procedure might be associated with a quicker return to work or reduced blood
loss.

A growing number of studies have investigated the relationship between hysterectomy surgical
approach (eg, vaginal vs abdominal vs laparoscopic, supracervical vs total) and patient-reported
outcomes in various populations; however, few studies have focused on outcomes specifically
identified by hysterectomy patients as being of greatest importance to them.2,4–8 The personal health
goals and preferences of each patient are considered patient-centered outcomes, outcomes that, if
understood, could influence clinical care.

This paper reports on the first step in our overall goal to identify and compare patient-centered
outcomes across surgical approaches among black and white hysterectomy patients at Henry Ford
Health System (HFHS) in Detroit, Michigan. While previous work did identify women’s beliefs about
hysterectomy, this earlier work did not include women who had already had a hysterectomy.9 To
identify the patient-centered outcomes of interest in our longitudinal study of hysterectomy patients, we
conducted focus groups with hysterectomy patients who had their surgeries at HFHS hospitals. This
work, we believe, is among the first reports of hysterectomy patients’ priorities for their clinical care,
decision-making, and recovery related to hysterectomy.

METHODS
Following approval from the institutional review board, initial conversations were held with 4
hysterectomy patients who volunteered to discuss their experience, individually, with one of the authors
(G.W.). The women had different surgeons and surgical approaches. The women were asked to
describe their health prior to the surgery and recount their experiences regarding the process of

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5953196/ 2/12
10/22/2019 Identifying What Matters to Hysterectomy Patients: Postsurgery Perceptions, Beliefs, and Experiences

deciding to have the surgery, type of surgery, and their recovery. They were asked to share comments
about what they would want other women to know about hysterectomy. The following themes were
discussed: reason for surgery, satisfaction with the surgery, and possible fears due to the surgery.

Summaries of the discussion with these 4 women provided the information that was used to create the
questions for the focus group discussion guide. In total, 6 focus groups were initially scheduled with
patients from HFHS, with additional focus groups planned in the event that saturation of themes was
not reached after the initial wave. To account for participant responses being affected by the time since
surgery, 3 different groups of women, defined by the time since hysterectomy, were recruited for
participation. Postsurgery time periods were defined a priori: 0–6 months; 6–24 months; and 24–60
months. Black and white women are the most common race groups among HFHS patients, and focus
groups were stratified by these two races (based on feedback from the pilot focus group). Race was
defined by the classification recorded in the electronic medical record (EMR) of each woman.

Women were selected from an electronic data pull through HFHS’s virtual data warehouse, and an
EMR review was used to confirm eligibility. Patients having an EMR-documented CPT® code of
hysterectomy or a related ICD-9 code (68.3–68.7, 68.9) from December 2012 to December 2014
(N=2,455) were selected for participation. Patients less than 18 or greater than 65 years old (n=203)
and patients who were deceased or status unknown (n=424) were excluded. Patients with a record in
the HFHS tumor registry for a cancer diagnosis were excluded (n=447), as cancer patients have a
different treatment course than women undergoing hysterectomy for noncancer reasons. Women
without a phone number or address or who had an unknown race also were excluded (n=15, n=1, and
n=218, respectively). Non-English speakers were excluded (n=109). Participants also were recruited
through electronic advertisements in the employee newsletter at HFHS. There were 1,038 eligible
women identified.

A portion of the eligible women were postal mailed an introduction letter to the study. The letter
described the purpose of the focus groups and indicated that someone from our staff might call to invite
their participation in a focus group. A phone number was included for questions or interest in
participation. We sent batches of letters to small subsets of the eligible women until the focus groups
were filled. In total, 280 (27.0% of eligible patients) letters were mailed to women encompassing the 3
time periods of 0–6 months (n=105), 6–24 months (n=105), and 24–60 months (n=70)
posthysterectomy. Five letters were returned to sender. From 773 recruitment phone calls, 39 women
agreed to participate and 24 women attended a focus group.

Participants were given their choice of two dates to attend a focus group per postsurgery time point.
Focus groups were scheduled throughout the day and region to better accommodate women. All focus
groups were audio-recorded and transcribed for qualitative data analysis. Each focus group was
facilitated by one moderator, one assistant, and a notetaker. Focus groups lasted approximately 90
minutes. Participants were compensated $40 and provided refreshments. At the focus group,
participants were asked to complete a brief survey that collected additional demographic data. Written
informed consent was obtained prior to each focus group.

Transcribed responses to the focus group questions were entered into a spreadsheet to facilitate matrix-
style Framework Method analysis.10 Content analysis was completed iteratively, with study goals and
focus group questions providing the initial organizational framework. Experienced reviewers (G.L.A.,
H.O.), who participated in running the focus groups and who have previously worked on focus group
research published in peer-reviewed publications,11–13 read through each transcript at least 2 times
and entered relevant topics and direct quotes. Separately, the study principal investigator (G.W.)
listened to all focus group recordings. Preliminary codes to identify topics, themes, and subthemes
were identified, discussed, revised, and applied to the data.14 The reviewers met periodically for
consensus checks to identify any additional subthemes and to check consistency of the coding.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5953196/ 3/12
10/22/2019 Identifying What Matters to Hysterectomy Patients: Postsurgery Perceptions, Beliefs, and Experiences

A list of topics was identified by the analysis team. During the course of analysis, coders reviewed the
same randomly selected transcripts, and identified and compared themes until no new themes were
identified. Direct quotes to represent themes were identified by speaker number and date of the focus
group session. The mean intercoder calibration of topics and themes across the calibration categories
was 90%.

RESULTS
In total, 24 women attended a focus group between February and May 2015. At the focus groups,
participants self-identified their race as black (n=12) or white (n=11); 1 participant did not report her
race (ie, unknown). All participants were within 5 years of their hysterectomy. Focus group participants
were categorized by time since surgery and race: up to 6 months (n=7: black [4], white [3]); 6 to 24
months (n=6: black [4], white [2]); and greater than 24 months to 60 months (n=10: black [4], white
[6]). As responses were consistent across all race and “timing” groups, we did not conduct additional
focus groups (saturation was reached). Three participants did not complete the entire voluntary
postgroup survey.

Demographic information extracted from the EMR is presented in Table 1. Overall, average participant
age was 49.6 years (SD: 12.3 years) and average time since surgery was 1.7 years (SD: 1.4 years).

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5953196/ 4/12
10/22/2019 Identifying What Matters to Hysterectomy Patients: Postsurgery Perceptions, Beliefs, and Experiences

Table 1
Demographics by Race and Time Posthysterectomy for Focus Group Participants

Black race (n=12) White race (n=11)

Total study 0–6 6–24 24–60 0–6 6–24 24–60

Characteristic population months months months months months months
*
Participated in focus 24 4 4 4 3 2 6
group, n
†
Completed postgroup 22 2 3 5 3 2 6
survey, n
Age, mean ± SD 49.63 ± 12.25 49.92 ± 10.40 49.18 ± 15.52
Years since surgery date, 1.69 ± 1.42 1.41 ± 1.19 2.10 ± 1.68
mean ± SD
Marital status, n
 Married 10 1 1 3 1 -- 4
 Divorced 6 1 -- 1 1 1 2
 Widowed -- -- -- -- -- -- --
 Separated -- -- -- -- -- -- --
 Never married 4 -- 2 -- 1 1 --
 Partnered 1 -- -- 1 -- -- --
 Unknown 3 -- -- -- -- -- --
Income, n
 <$25,000 4 -- 1 -- 1 1 1
 $25,001–$50,000 2 -- -- 1 -- -- 1
 $50,001–$75,000 5 -- -- 3 1 1 --
 <$75,000 4 -- -- 1 1 -- 2
 Unknown 9 2 2 -- -- -- 2
Education level, n
 < High school 2 -- -- -- -- 2 --
 High school 4 -- 1 -- 2 -- 1
diploma/GED
 Associate or technical 1 -- -- -- -- -- 1
degree

Open in a separate window

*
Includes 1 participant of unknown race from the “0–6 months since surgery” group.
†
Includes 1 participant of unknown race; excludes two participants who did not complete the questionnaire.
‡
Includes 1 participant of unknown race.
GED, general equivalency diploma; SD, standard deviation.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5953196/ 5/12
10/22/2019 Identifying What Matters to Hysterectomy Patients: Postsurgery Perceptions, Beliefs, and Experiences

Ensuing results are presented by topic, theme, and subtheme. Responses generally grouped into topics
of pre- and postsurgical experiences, and information all women should know. Response themes
included 1) decision-making, 2) the procedure (surgical experience), 3) recovery, 4) advice to past self,
and 5) recommendations to other women. Selected quotes are presented below and all quotes are
verbatim (B = black woman; W = white woman).

The Presurgical Experience

Decision-Making (Personal Perceptions) Many women shared worries about age, preexisting
conditions, previous women’s health experiences, and stories from other women as affecting their
decision of having a hysterectomy. Many expressed that a hysterectomy eliminated their ability to carry
a child, and several talked about the stigma of not having all their reproductive organs, leaving them
“incomplete” as a woman. Others stated that their life was at risk if they did not have a hysterectomy.

W: “I don’t know that I was prepared at all, only because again, it was an immediate type thing …
his [the doctor’s] advice was, ‘You’re not going to get any better. It’s not going to get any
different. This is just the route you have to go. Um, and this is what you can expect.’ And the
whole time he’s holding my hand … so I didn’t need any more preparation to — to go through with
this. I just needed to know that I was confident in his decision.”

Decision-Making (Social Support) Women who had time to consider their options prior to surgery
reported talking with their doctors, family, partners, and other women who had hysterectomy
experience. Most women spoke with other people when making their decision, except for a few
participants who required an emergency hysterectomy for urogynecologic complications. Younger
women reported not having a peer close in age to consult, making their decision difficult. A few
women researched on the internet or prayed on their decision, and some women expressed reluctance
to discuss their hysterectomy with others due to its life-altering effect on their ability to reproduce.
Further, some women mentioned the stigma of being “less of a woman” due to a hysterectomy as a
reason to not seek social support. Regardless of preference to seek advice from others or investigate
independently, most women indicated they believed they had enough information to make a decision
about having the surgery, with many reporting reliance on physician recommendations. Some women
felt they did not have a choice about having the surgery or surgical type.

B: “I had serious conversations with my husband. He wanted to let me know that he was
supportive and whatever I decided, he was with me. But, you know, in having a conversation with
him, I was kind of convinced that I really needed to have it done because of the growth.”
[continued] “There was also a stigma attached … wasn’t something that I wanted to discuss with
everybody either. And especially when you’re young and you have a hysterectomy, you’re looked
upon as less than a woman. That stigma, it’s there and it’s real … lost your reproductive organs,
and so you’re kind of less than a full woman.”

Decision-Making (Personal Goals for Surgery) When asked about what surgical outcomes were
important and what would improve their quality of life, many women reported a long history of
symptoms due to fibroids, especially pain and discomfort, years of abdominal distension and heavy
menstrual bleeding, painful intercourse, and reduced cancer risk.

B: “I just want to have a better quality of life. I don’t want to have to keep having this issue. I
don’t want to have to keep having this pain during sex. I don’t want to keep having this discussion
with my husband like, ‘No, I don’t want to do it tonight because it hurts sometimes.’ I don’t want
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5953196/ 6/12
10/22/2019 Identifying What Matters to Hysterectomy Patients: Postsurgery Perceptions, Beliefs, and Experiences

to keep having these nuances that are just driving me nuts if I can do something about it.”

The Procedure (Surgical Experience) Women reported feeling informed of the surgical plan
prehysterectomy; some said they had been given options, and nearly all knew the plan could change
during surgery. Women described some of the surgical approaches as “getting cut” and “cut me,”
referring to an abdominal hysterectomy. The idea of a midline or transverse incision may have delayed
their hysterectomy decision. Most participants knew the type of surgery that was performed based on
their scars.

W: “We talked about it … I said, ‘Well, how are you going to do it?’ I remember that. And he said,
‘We’ll probably do it laparoscopically because … it’s easier,’ or whatever. I think I probably asked
him more than he asked me. But he already had his way of doing it … I didn’t want to be cut all
the way open.”

Generally, women were aware of the physiological consequences of removing certain organs (eg,
removal of the ovaries creating surgical menopause). Frequently, women mentioned their own
preference and their doctor’s goal for keeping the cervix and ovaries. Some women were not sure about
what organs were removed. Most women were comfortable with the discussions they had with their
doctors, but a few women were not comfortable with the decision-making process, and some expressed
that their doctor had his or her own surgical preferences.

B: “I had a total laparoscopic hysterectomy. And that ‘total,’ I’m like, ‘Does that include my
ovaries because you’re saying total?’ He said, ‘No,’ and he explained it to me, you know, the
proper name for it and when they do take your ovaries, you know. So he was, um, real — pretty
easy to talk to, and I don’t think there’s nothing I didn’t ask at the time.”

The Postsurgical Experience

Physical Recovery The recovery period after surgery required substantial changes to women’s daily
activities, including loss of independence, slower movement, and restrictions to their activities of daily
living (eg, no heavy lifting). Some women experienced unexpected complications postsurgery. Many
relied on others for home-related activities (eg, chores, shopping, driving). One woman discussed the
long-term postsurgical pain she experienced due to positioning during her surgery. For participants who
spoke about sexual intimacy during recovery, there was a clear absence of desire to be sexually
intimate.

W: “Because yeah, I — I didn’t want that because I knew the recovery would be harder. I knew
that the emotional part for me would be difficulter [sic], had I had to have that. So again, I don’t
think you can prepare yourself for even what they’re telling you is going to happen, let alone the
outcome of it … let alone the recovery part of it. And then again, mine was not having enough
energy. I was just angry that I wasn’t there yet, to be able to get back in the [usual routine], you
know … and that eats at me not being able to do the ‘norm’ (some laughing).”

Recovery Expectations (Physician-Provided Information) Women with hysterectomy-related

complications identified that their recovery was not what they expected, whereas women with few or
no complications said their recovery postsurgery was as anticipated. Some women recalled discussing
the recovery process with their physicians but felt insufficiently informed. Regardless of complications,
participants thought their recovery would be different than what their physician quoted.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5953196/ 7/12
10/22/2019 Identifying What Matters to Hysterectomy Patients: Postsurgery Perceptions, Beliefs, and Experiences

B: “Well, they were better than I thought they would be. I was — like, I really didn’t think I’d be
able to do it that fast — but I was kind of hoping I wouldn’t be able to do it that fast so I could stay
home longer (laughing), but I didn’t — but I did fine.”

Recovery Expectations (Family/Friends) Some women did not have discussions with family or friends
about the recovery because of the aforementioned stigma. Some noted that they knew everyone’s
recovery would be different due to each person’s uniqueness. For the participants who did rely on
social support for recovery advice, it was from women who previously had a hysterectomy.

B: “And I didn’t ask anybody about, you know, afterwards. I just asked about before the surgery.
And then, um, from the people that I asked before the surgery, they were like, ‘[I] should have had
it done a long time ago. You know, I shouldn’t have waited and suffered with, um, what I had to go
through.’ But yeah, I mean and I didn’t expect, you know, to feel like that after recovery. So I went
into it — and then I still have to go back now so the doctors can look at me. I haven’t made that
appointment to see if everything is okay.”

Information All Women Should Know

Advice to “Past Self” When asked what they would tell themselves if they could go back, for the most
part, women said they wished they would have had the surgery sooner and not delayed it. For women
who experienced complications, they would talk with their doctor more before the surgery about
potential complications. Several women mentioned that they would not have had previous surgeries (ie,
myomectomy) but would opt for a hysterectomy. One woman said she would make her doctor pay
closer attention to her symptoms postsurgery.

B: “I would have told myself, ‘When you’re 41, have a hysterectomy’ ... have an interactive —
interpersonal communication with your doctor so that you can discuss things that are related to
your health in the GYN community. And don’t be embarrassed by it, you know. Find somebody
who will talk to you that you can talk to and that you can dialogue with so that you can make
better decisions. Because I would not have had that myomectomy; I would have had a
hysterectomy.”

Recommendations to Other Women Participants suggested that women referred for hysterectomy
should do their own research and not depend solely on physician recommendations. They encouraged
seeking social support from others familiar with the experience and that women should ensure there is
a support system at home or a caretaker during recovery. Suggestions included making a plan to take
generous time off at work in anticipation that the recovery time is longer than expected, as they
experienced. Participants suggested that other women consider a second opinion, make the decision for
themselves, and to consider the surgical impact on quality of life. Some women suggested taking a
holistic “take care of yourself” approach and that the whole process is not as scary as it sounds.

W: “Talk to your friends and other women, whether they’re your friends or associates or whatever.
But ask around and just find out so you know what questions to ask when you go in.”

Parting Thoughts
Most women would not have done anything differently related to their hysterectomy experience, and
nearly all said they were satisfied with the surgery and its results. For the few who reported
complications, it seems that the quality of life postsurgery outweighs any complications they faced
prior to surgery or during recovery.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5953196/ 8/12
10/22/2019 Identifying What Matters to Hysterectomy Patients: Postsurgery Perceptions, Beliefs, and Experiences

B: “Every month when I ovulated, I would have a lot of, uh, pain and nausea and just be really,
really ill. And they said the only way — I was told by one doctor the only way to rid that was to
have a complete hysterectomy and have my ovaries removed, which I wasn’t going to do ever. So
… but all of my issues that were related to my menstruating and everything have gone away. And I
just feel like a different person now. I am so blessed.”

DISCUSSION
The Institute of Medicine defines patient-centered care as “providing care that is respectful and
responsive to individual patient preferences, needs and values, and ensuring that patient values guide
all clinical decisions.”15 From analysis of our focus groups with hysterectomy patients removed from
surgery at varying intervals, we identified themes and beliefs about their goals and experiences that
may better support health care providers in delivering patient-centered care to women undergoing
hysterectomy. These results have influenced the data being collected for a prospective cohort study of
women undergoing hysterectomy at HFHS. This ongoing cohort study, which follows women for a
year after surgery, includes general questions about satisfaction, pain, and current health state, but also
includes validated questionnaires on decisional conflict and regret, sexual function, and depression,
domains of interest gleaned from these focus groups. Focus group participants also were asked to
review potential cohort study materials for language, appeal, applicability, sensitivity, and importance.
Combined with clinical data and surgical details from the EMR, the objective of the ongoing cohort
study is to provide a unique and complementary contribution to the overall field of the longitudinal
experience of hysterectomy patients.3,4,16–20

These focus group data suggest a need for increased procedure education, social support, and
empowerment in the decision-making process, along with expanding information currently presented
on postoperative expectations and bodily changes that occur posthysterectomy. As has been previously
shown, participants reported the importance of support from family, friends, and other women in their
surgical outcomes.21 When deciding to undergo a hysterectomy, women were primarily concerned
with age at surgery, preexisting conditions, previous health experiences (eg, myomectomy), and
potential stigma of being “less of a woman,” unable to reproduce, and “incomplete.” These themes
have been reported previously in work with public health clinic patients and prehysterectomy and
uterine artery embolization patients.9,22,23

Presurgical education could affect surgical satisfaction,24 but the focus group participants indicated
they had enough information to make a decision prior to surgery. While participants often relied on
physician recommendations, they would advise other prehysterectomy women to research for
themselves and not solely rely on physician recommendations. Because women relied on physician
recommendations and preferences, some felt they did not have a choice, even when options were given
and they were informed of the surgical plan prehysterectomy. Interestingly, while participants felt well-
informed presurgery, some participants were unable to report which organs were removed during the
surgery.

Reported reasons to undergo a hysterectomy to improve quality of life were pain and discomfort,
painful intercourse, and heavy menstrual bleeding, with some participants waiting a decade or more
after presentation of symptoms. Participants stated that they would have had the surgery sooner and
would not have undergone previous gynecologic surgeries. As a tacit expression of satisfaction, most
women would not have done anything differently related to their hysterectomy experience, and nearly
all said they were satisfied with the surgery and its results. Quality of life posthysterectomy appeared to
outweigh any complication concerns pre- and postsurgery.

Limitations

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5953196/ 9/12
10/22/2019 Identifying What Matters to Hysterectomy Patients: Postsurgery Perceptions, Beliefs, and Experiences

There are two main limitations in our investigation. First, our sample is from one geographic area and
may not be generalizable; however, overlapping themes with prior work suggest that some themes may
supersede region. Second, our sample size and participation is small, which could limit
representativeness; however, focus group participants were representative of the typical patient
population at HFHS, and thematic saturation was reached in the focus groups. Despite this, we
recruited from a very diverse urban and suburban population, and we were able to identify repeated
themes across our focus groups, regardless of time since surgery or race.

A strength of this study is the inclusion of women up to 60 months postsurgery, as the groups provided
short-and long-term perceptions after having a hysterectomy. Findings about the perceptions and
beliefs of these women may support health care providers in addressing concerns of women pre- and
posthysterectomy.

CONCLUSIONS
When delivering patient-centered care, providers should consider each patient’s goals and expectations
pertaining to surgical knowledge, surgical choice, social support, decision-making, body image,
gravidity, and operative workflow. Providers may focus on education, social support, and decisional
empowerment.

Patient-Friendly Recap

Hysterectomy, in which part or all of a woman’s uterus is removed, is commonly

recommended for those with symptoms like chronic pain or bleeding.

The authors interviewed women who had undergone a hysterectomy to glean insights into
their experiences, particularly in regards to selecting a surgical approach.

Women generally expressed satisfaction in their surgery choice and results, though some felt
uninformed about potential after-effects.

Feedback from focus groups was used to steer design of a larger ongoing study on long-term
hysterectomy outcomes.

Acknowledgments
The authors gratefully acknowledge patient advisors Gwenelle Snead and Kate Bongiorno for their
contributions and edits to this manuscript.

Footnotes
Author Contributions

Study design: Sangha, Wegienka. Data acquisition or analysis: all authors. Manuscript drafting: all authors.
Critical revision: Bossick, Sangha, Wegienka.

Conflicts of Interest

None.

Funding Sources

This study was funded by the Agency for Healthcare Research and Quality (R24HS022417). The study
sponsors did not play a role in the collection, analysis, and interpretation of the data, or in the writing of this
manuscript.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5953196/ 10/12
10/22/2019 Identifying What Matters to Hysterectomy Patients: Postsurgery Perceptions, Beliefs, and Experiences

References
1. Wilcox LS, Koonin LM, Pokras R, Strauss LT, Xia Z, Peterson HB. Hysterectomy in the United
States, 1988–1990. Obstet Gynecol. 1994;83:549–55. doi: 10.1097/00006250-199404000-00011.
[PubMed] [CrossRef] [Google Scholar]

2. Einarsson JI, Suzuki Y, Vellinga TT, et al. Prospective evaluation of quality of life in total versus
supracervical laparoscopic hysterectomy. J Minim Invasive Gynecol. 2011;18:617–21. doi:
10.1016/j.jmig.2011.06.003. [PubMed] [CrossRef] [Google Scholar]

3. Greer WJ, Richter HE, Wheeler TL, et al. Long-term outcomes of the Total or Supracervical
Hysterectomy (TOSH) trial. Female Pelvic Med Reconstr Surg. 2010;16:49–57. doi:
10.1097/SPV.0b013e3181cec343. [PMC free article] [PubMed] [CrossRef] [Google Scholar]

4. Kuppermann M, Learman LA, Schembri M, et al. Contributions of hysterectomy and uterus-

preserving surgery to health-related quality of life. Obstet Gynecol. 2013;122:15–25. doi:
10.1097/AOG.0b013e318292aea4. [PubMed] [CrossRef] [Google Scholar]

5. Kuppermann M, Summitt RL, Jr, Varner RE, et al. Sexual functioning after total compared with
supracervical hysterectomy: a randomized trial. Obstet Gynecol. 2005;105:1309–18. doi:
10.1097/01.AOG.0000160428.81371.be. [PubMed] [CrossRef] [Google Scholar]

6. Brucker SY, Taran FA, Bogdanyova S, et al. Patientreported quality-of-life and sexual-function
outcomes after laparoscopic supracervical hysterectomy (LSH) versus total laparoscopic hysterectomy
(TLH): a prospective, questionnaire-based follow-up study in 915 patients. Arch Gynecol Obstet.
2014;290:1141–9. doi: 10.1007/s00404-014-3318-1. [PubMed] [CrossRef] [Google Scholar]

7. Lermann J, Häberle L, Merk S, et al. Comparison of prevalence of hypoactive sexual desire disorder
(HSDD) in women after five different hysterectomy procedures. Eur J Obstet Gynecol Reprod Biol.
2013;167:210–4. doi: 10.1016/j.ejogrb.2012.12.005. [PubMed] [CrossRef] [Google Scholar]

8. Pouwels NS, Brito LG, Einarsson JI, Goggins ER, Wang KC, Cohen SL. Cervix removal at the time
of hysterectomy: factors affecting patients’ choice and effect on subsequent sexual function. Eur J
Obstet Gynecol Reprod Biol. 2015;195:67–71. doi: 10.1016/j.ejogrb.2015.09.040. [PubMed]
[CrossRef] [Google Scholar]

9. Groff JY, Mullen PD, Byrd T, Shelton AJ, Lees E, Goode J. Decision making, beliefs, and attitudes
toward hysterectomy: a focus group study with medically underserved women in Texas. J Womens
Health Gend Based Med. 2000;9(Suppl 2):S39–50. doi: 10.1089/152460900318759. [PubMed]
[CrossRef] [Google Scholar]

10. Gale NK, Heath G, Cameron E, Rashid S, Redwood S. Using the framework method for the
analysis of qualitative data in multi-disciplinary health research. BMC Med Res Methodol.
2013;13:117. doi: 10.1186/1471-2288-13-117. [PMC free article] [PubMed] [CrossRef]
[Google Scholar]

11. Rolnick SJ, Calvi J, Heimendinger J, et al. Focus groups inform a web-based program to increase
fruit and vegetable intake. Patient Educ Couns. 2009;77:314–8. doi: 10.1016/j.pec.2009.03.032.
[PMC free article] [PubMed] [CrossRef] [Google Scholar]

12. Alexander GL, Olden HA, Troy T, Miree CA, Joseph CLM. Overweight adolescents and asthma:
revealing motivations and challenges with adolescent-provider communication. J Asthma.
2017:55266–74. doi: 10.1080/02770903.2017.1323921. [PMC free article] [PubMed] [CrossRef]
[Google Scholar]

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5953196/ 11/12
10/22/2019 Identifying What Matters to Hysterectomy Patients: Postsurgery Perceptions, Beliefs, and Experiences

13. Alexander GL, Lindberg N, Firemark AL, Rukstalis MR, McMullen C. Motivations of young
adults for improving dietary choices: focus group findings prior to the MENU GenY dietary change
trial. Health Educ Behav. 2017 Oct 1; doi: 10.1177/1090198117736347. [Epub ahead of print]
[PubMed] [CrossRef] [Google Scholar]

14. Ryan GW, Bernard HR. Techniques to identify themes. Field Methods. 2003;15:85–109. doi:
10.1177/1525822X02239569. [CrossRef] [Google Scholar]

15. Institute of Medicine (US) Committee on Quality of Health Care in America. Crossing the Quality
Chasm: A New Health System for the 21st Century. Washington, DC: National Academies Press; 2001.
[Google Scholar]

16. Kuppermann M, Varner RE, Summitt RL, Jr, et al. Effect of hysterectomy vs medical treatment on
health-related quality of life and sexual functioning: the medicine or surgery (Ms) randomized trial.
JAMA. 2004;291:1447–55. doi: 10.1001/jama.291.12.1447. [PubMed] [CrossRef] [Google Scholar]

17. Kuppermann M, Learman LA, Schembri M, et al. Predictors of hysterectomy use and satisfaction.
Obstet Gynecol. 2010;115:543–51. doi: 10.1097/AOG.0b013e3181cf46a0. [PubMed] [CrossRef]
[Google Scholar]

18. Kuppermann M, Learman LA, Schembri M, et al. Effect of noncancerous pelvic problems on
health-related quality of life and sexual functioning. Obstet Gynecol. 2007;110:633–42. doi:
10.1097/01.AOG.0000279153.56275.b5. [PubMed] [CrossRef] [Google Scholar]

19. Teplin V, Vittinghoff E, Lin F, Learman LA, Richter HE, Kuppermann M. Oophorectomy in
premenopausal women: health-related quality of life and sexual functioning. Obstet Gynecol.
2007;109:347–54. doi: 10.1097/01.AOG.0000252700.03133.8b. [PubMed] [CrossRef]
[Google Scholar]

20. Schiff L, Wegienka G, Sangha R, Eisenstein D. Is cervix removal associated with patient-centered
outcomes of pain, dyspareunia, well-being and satisfaction after laparoscopic hysterectomy? Arch
Gynecol Obstet. 2015;291:371–6. doi: 10.1007/s00404-014-3420-4. [PubMed] [CrossRef]
[Google Scholar]

21. Webb C, Wilson-Barnett J. Self-concept, social support and hysterectomy. Int J Nurs Stud.
1983;20:97–107. doi: 10.1016/0020-7489(83)90005-6. [PubMed] [CrossRef] [Google Scholar]

22. Augustus CE. Beliefs and perceptions of African American women who have had hysterectomy. J
Transcult Nurs. 2002;13:296–302. doi: 10.1177/104365902236704. [PubMed] [CrossRef]
[Google Scholar]

23. Nevadunsky NS, Bachmann GA, Nosher J, Yu T. Women’s decision-making determinants in

choosing uterine artery embolization for symptomatic fibroids. J Reprod Med. 2001;46:870–4.
[PubMed] [Google Scholar]

24. Bradford A, Meston C. Sexual outcomes and satisfaction with hysterectomy: influence of patient
education. J Sex Med. 2007;4:106–14. doi: 10.1111/j.1743-6109.2006.00384.x. [PMC free article]
[PubMed] [CrossRef] [Google Scholar]

Articles from Journal of Patient-Centered Research and Reviews are provided here courtesy of Aurora Health
Care

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5953196/ 12/12