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Women’s Experiences With Vulvar Intraepithelial Neoplasia Wendy M. Likes, Cynthia Russell, and Todd Tillmanns
Correspondence Wendy M. Likes, DNSc, APRN-Bc, University of Tennessee Health Science Center, College of Nursing, Memphis, TN.
[email protected]
ABSTRACT
Keywords quality of life gynecology vulvar intraepithelial neoplasia qualitative methods
Setting: Participants were recruited from an urban oncology clinic.
Objective: To explore women’s experiences with vulvar intraepithelial neoplasia during diagnosis and treatment. Design: Two focus groups, each with 3 participants, were conducted as a pilot study. Participants were asked openended questions about their experiences, quality of life, sexual functioning, body image, and well-being. Responses were audio taped, transcribed, and independently analyzed by 2 researchers to identify themes and develop categories of the participants’ experiences.
Patients/Participants: The study population consisted of 6 White women ranging in age from 22 to 72 years. Methods: Participants with a diagnosis of vulvar intraepithelial neoplasia were recruited using flyers posted in their oncologist’s office. An interview guide was used focusing on participants’ experiences. Results: Participants described a cyclic journey with vulvar intraepithelial neoplasia related to the recurrent nature of the disease. Two internal influences on the journey were described: spirituality and time in life. Five external influences were discussed: significant others, health care providers, family, friends, and others with vulvar intraepithelial neoplasia. Conclusion: Health care providers cannot alter the recurrent nature of vulvar intraepithelial neoplasia; however, they can better understand a woman’s experience and the variables that impact her experience in a negative or positive way.
JOGNN, 37, 640-646; 2008. DOI: 10.1111/j.1552-6909.2008.00291.x Accepted July 2008
Wendy M. Likes, DNSc, APRN-Bc, is an assistant professor at the University of Tennessee Health Science Center, College of Nursing, Memphis. Cynthia Russell, PhD, ANP, is a professor at the University of Tennessee Health Science Center, College of Nursing, Memphis. Todd Tillmanns, MD, is a physician at the West Clinic and University and an associate professor of Obstetrics and Gynecology, University of Tennessee Health Science Center, Memphis.
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ulvar intraepithelial neoplasia (VIN) is a premalignant condition of the vulva with the potential of developing into an invasive carcinoma. Studies show a dramatic increase in VIN incidence. Population estimates show VIN III doubled from 1973 to 1976 and from 1985 to 1987 for all ages and nearly tripled for White women under the age of 35 (Sturgeon, Britnon, Devesa, & Kurman, 1992). In a European cohort followed from 1994 to 1997, a 392% increased incidence occurred in women under 50 years of age, with tripling in all age groups combined. This marked increase in incidence may be associated with increasing rates of sexually transmitted human papilloma virus (HPV) infection (Joura, Losch, Haider-Angeler, Breitenecker, & Leodolter, 2000).
V
The main modality for VIN treatment is vulvar excision or ablation of the a¡ected area (Athavale et al., 2007). Depending on the location and size of the VIN lesion, surgery may range from a small excision of a few centimeters of the labia minora to
excision of both labia minora to excision or ablation of the clitoris and all labial structures. The recurrence rate of VIN can be as high as 46% to 70%, with positive margin status increasing the likelihood of recurrence (Hart, 2001). The high recurrence rate is concerning because women may undergo multiple excisions. Excision may cause dis¢gurement, which has broad implications for altered quality of life (QOL). Few studies explore these important clinical issues, probably because of the relatively small number of women requiring surgery for VIN. These published studies suggest that women after vulvar excision for VIN may be at signi¢cant risk for impaired sexual function, global QOL, and relationship satisfaction, depression, and poor body image (Anderson, Cassady, Shimm, & Stea, 1995; Andreasson, Moth, Jensen, & Bock, 1986; Green et al., 2000; Likes, Stegbauer,Tillmanns, & Pruett, 2007; Tamburini, Filiberti, Ventafridda, & DePalo, 1986; Thuesen, Andreasson, & Bock,1992).
& 2008 AWHONN, the Association of Women’s Health, Obstetric and Neonatal Nurses
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RESEARCH
Likes, W. M., Russell, C., and Tillmanns, T.
Upwards of 76% of women have been found to have worsening sexual function after vulvar excision with 10% to 30% of women not having resumed sexual intercourse 1 year following vulvar excision (Tamburini et al.,1986). In previous studies, women with sexual dysfunction and decreased sexual function were found to have diminished global QOL that negatively in£uenced romantic relationships and intimacy (Olfson, Uttaro, Carson, & Tafesse, 2005). The few published studies of this population have been performed with nonvalidated questionnaires that may not identify the unique aspects of the e¡ects of vulvar surgery. One published study that utilized a questionnaire validated in this speci¢c population found that women after excision for VIN had poorer scores in sexual function than a healthy age-matched control group (Likes et al., 2007).
Purpose With the rapidly increasing incidence, occurrence at younger ages, and the clinically important consequences of VIN and surgical treatment, it is imperative to explore QOL and the domains of QOL a¡ected by vulvar surgery. Focus groups provide insight about changes that occur after vulvar excision that may not be measured using a standardized instrument allowing nurses to gain insights about other challenges these women face that are not identi¢ed in current published studies. Understanding the e¡ects of surgical excision for women with VIN could facilitate the development of interventions designed to enhance QOL. Therefore, the purpose of this study was to explore women’s experiences with VIN from disease recognition through posttreatment and to identify the in£uences of their experience. This study was conducted as a pilot study to test the questions utilized in the focus groups in anticipation for use in a larger study on predictors of QOL following vulvar excision for VIN.
Studies show a dramatic increase in vulvar intraepithelial neoplasia incidence.
Focus group methodology assists in exploring, narrowly focused topics (Krueger & Casey, 2000). Focus groups are interviews that capitalize on group dynamics. In focus groups, group interaction is explicitly used to generate data and insights that would be unlikely to emerge from individual interviews or participant observation alone. Researchers using focus groups observe group dynamics and discussions, leading to ¢rsthand insights into participants’ behaviors, attitudes, language, et cetera. An interview guide was developed that included a standard script of open-ended questions focusing on participants’ experiences: from initial recognition of a problem through treatment and its’ e¡ects,
Table 1: Question Script for Focus Groups 1. Tell us about your experience of obtaining a diagnosis of VIN. 2. Now, what about your treatment journey? What were your experiences in obtaining treatment for your VIN? 3. Talk about the experience of actually having the vulvar excision. What was the decision point for that? How did you decide to have this particular treatment? 4. Tell us about your health care provider and your experiences with that person. 5. Since you have had the vulvar excision, what changes have you noticed? 6. Tell us how you feel this surgery has a¡ected your quality of life. 7. Tell us how this surgery has a¡ected your relationship with others and with your partner.
Materials and Methods After obtaining Institutional Review Board approval from the University of Tennessee Health Science Center, £yers were posted in a community oncology clinic for recruitment. Additional screening for inclusion/exclusion criteria were performed when patients called expressing an interest in the study. Inclusion criteria were (a) 18 years of age or older, (b) diagnosis of VIN with previous vulvar excision, and (c) ability to speak and understand English. Exclusion criteria were a history of cancer or mastectomy. After recruitment e¡orts for 6 to 8 weeks, two focus groups were conducted.
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8. Tell us about the di¡erences you have noticed in your sexual relationships. 9. Tell us how this surgery has a¡ected how you feel about yourself as a woman and human being. 10. Talk with us about your genital image. How has this changed for you? 11. How has this surgery a¡ected you psychologically? For instance, sadness, depression, grief, etc. 12. Is there anything else that you can think of that needs to be asked or said?
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Understanding the effects of surgical excision for women with vulvar intraepithelial neoplasia could facilitate the development of interventions designed to enhance quality of life. including QOL, sexual functioning, body image, and well-being (Table 1). The questions included in the focus groups were generated by (a) a review of the relevant literature regarding QOL in VIN, (b) previous pilot work of the researchers, and (c) clinical experience. Speci¢c questions were asked about participants’ experiences with their health care providers (HCPs) and signi¢cant others. In addition, data were collected on patient demographics and dates of excision(s). Audiotape-recorded focus groups were conducted by an experienced focus group facilitator (the second author) in a private conference room at two separate clinic sites. The ¢rst author, who had extensive professional clinical experience with VIN, also attended each focus group and recorded handwritten notes that complemented the audiotape recordings. Each focus group lasted 1.5 to 2 hours. Incentives were not provided, however, snacks were available. Before beginning the focus groups, participants were noti¢ed that the sessions would be audiotape recorded and notes taken. All participants who inquired about the study and who met inclusion/exclusion criteria were o¡ered participation. Two potential participants were unable to participate due to scheduling con£icts. Written informed consent was obtained from all participants. Both researchers present during the focus groups were female to assist in making the participants feel comfortable in answering the sensitive, personal questions. Because of the small size of the focus groups, the interviewers carefully guided the discussion to ensure all participants contributed in answering the questions. At the end of each focus group, the responses of the participants were summarized by the researchers and discussed with the participants to ensure an understanding of the responses. A small number of participants were preferred in this study due to the intensive experience most women have after a vulvar excision (Krueger & Casey, 2000). After the ¢rst focus group, the researchers analyzed the questions and responses and found the initial questions were comprehensive enough to answer the research questions; therefore the questions were not changed during the second focus group. Focus groups were transcribed verbatim with the
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note-taker comparing the transcription to the handwritten notes to ¢ll in any gaps found. The data were independently analyzed by two researchers for themes regarding participants’ experiences and the in£uences of these experiences. Comments and responses were then highlighted; categories identi¢ed and de¢ned; and the responses grouped by category. A grid was developed to schematically identify common factors among the themes and included quote examples. The categories were analyzed and associated with negative and positive in£uences on the VIN experience. The researchers then discussed their ¢ndings. No di¡erences were found between the researchers regarding these ¢ndings; however, some themes and categories were found to be repetitive and overlapping, and therefore these were narrowed into broader categories. Although only two focus groups were conducted with a total of six participants, it was found that this number was adequate because similar stories among participants were observed with saturation of categories and themes found.
Results Participants The study population consisted of six White women ranging in age from 22 to 72 years, with an average age of 47 years (SD 16.31). This age range is consistent with previous published reports in this population, with the typical age range spanning from the 20s up to the 90s. The time from last vulvar excision ranged from 1 month to 33 years, with an average of 7 years (SD 5 86 months). All participants were still being followed and screened for VIN at least every 6 months by their HCP. Three of the participants were married, two divorced, and one single. Most participants reported symptoms before their diagnosis of VIN. The most common symptoms were itching, burning, and pain. The majority of the participants experienced more than one excision with one experiencing over ¢ve excisions, three experiencing two excisions, and two experiencing one excision. The number of excisions did not correlate with advancing age as the oldest participant had experienced the ¢ve excisions; however the youngest had experienced two excisions. The trajectory of the women’s experiences from initial recognition through posttreatment changes took a circular pattern, with many women experiencing recurrence of VIN and repeated excisions. The trajectory began with the recognition of a vulvar problem, proceeding to diagnosis of VIN, treatment, and posttreatment changes. Following a
JOGNN, 37, 640-646; 2008. DOI: 10.1111/j.1552-6909.2008.00291.x
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description of the trajectory, the in£uences on the journey is discussed.
Recognizing a Vulvar Problem Although most women described having vulvar symptoms before their diagnosis, they nonetheless were surprised by the diagnosis. Two women reported having had abnormal Pap smears, but had the impression the results were not signi¢cant. One participant called her physician because of vulvar itching and was told it was a yeast infection with no examination performed. Still another participant reported experiencing vulvar itch, but felt it was probably related to dry skin. Overall, women described vague symptoms that were not concerning to them; they were unprepared for the diagnosis and treatment required for VIN.
repeat excision at some point when the creams failed. When asked, participants did not recall the name of the creams. Participants were distressed over the repeat o⁄ce visits required and the potential for repeated surgeries. One participant said, ‘‘They cut it o¡ and it’s all gone and you’re good for that day. The next day you get up, it can be right back.’’ After two excisions and three months of ‘‘chemo cream,’’ one participant commented she was at the point she just wanted it (the vulva) taken o¡. The youngest participant, who had two vulvar excisions performed in less than 2 years, was discouraged with the never-ending cycle. The oldest participant said that after seven vulvar excisions, she has now developed cancer and was discussing radiation treatment with her physician.
Diagnosis of VIN
Posttreatment Changes
Participants found the diagnosis of VIN to be a shocking surprise. One participant described having a full-blown panic attack upon diagnosis. One participant described the HCPs’ facial expression during the exam as ‘‘scary.’’ Other participants felt the initial surgery would be all that was needed with no discussion of possible recurrence occurring. One participant described seeing multiple HCPs before obtaining a diagnosis. This participant felt the health care system had failed her, but was relieved to ¢nally have a diagnosis for her recurrent itching symptoms.
Participants discussed several posttreatment changes, including self-checks of the vulva, shame and embarrassment, and loss of control. Participants were asked about self-checking once a diagnosis of VIN had been made. Five participants admitted they do not perform self-checks on a regular basis and had not been advised to do so.These ¢ve participants agreed they did not know what would be abnormal and therefore did not know what to look for. One participant discussed being ‘‘obsessed’’ with performing self-exams. However, four participants noted that they had become more aware of their bodies after their diagnosis and three of the participants felt they had become obsessed with any changes they experienced, such as itching or pain. One participant said she never knew if itching she experienced was normal or if she should be concerned that her VIN was back. She commented she was afraid to drink too much for fear of going to the restroom because urinating reminded her of her VIN.
The participants did not believe adequate information was made available to them on their diagnosis, treatment, and prognosis. Participants were then asked how they sought more information after their diagnosis. Although participants commonly sought information on the Internet, they found this information very limited with not much detail given on treatment options or outcomes. Two participants accessed Internet-based support groups, but were more distraught and concerned after reading stories of women who had undergone multiple extreme surgeries.
The youngest participant, who was not in a signi¢cant relationship, felt she could not talk to others her age for fear they would not understand her experiences. She felt ‘‘boys’’ her age were too immature and she could not relate to them anymore.
Treatment The recurrent nature of VIN and the routine need for vulvar biopsies was problematic for the participants, and recurrences were distressing for the majority of the participants. One participant described her vulva in terms of ‘‘Swiss cheese’’ due to all the biopsies. All participants had undergone vulvar excisions as the ¢rst line of treatment. Several women discussed using creams in between excisions, but they all felt they would need to resort to
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All participants, except the oldest one, discussed feeling ashamed and embarrassed about their diagnosis and about it being related to a sexually transmitted infection (STI). Participants feared giving HPV to someone else, who might in the future experience what they were going through. One participant commented: Like my boyfriend . . . he said, ‘‘Do I make it worse? If we were to have sex, does that
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The participants discussed the positive influences of their health care providers but also spoke very adamantly about providers’ negative aspects.
make it worse? Can I give it to someone else? Will it be as bad as you have it?’’ I just feel like crap. I just feel awful. Another theme regarding posttreatment changes was loss of control. Participants expressed concern that they could not predict or control the virus and the changes it caused. This loss of control evoked a great deal of fear and frustration. Half of the participants felt their vulvas were physically di¡erent than before the excision, although no participants reported changes in sexual functioning.
Influences on the Journey People or life processes represented in£uences on women’s journey with VIN and negatively or positively a¡ected the women’s experiences after vulvar surgery for VIN. Analysis of the data identi¢ed both internal and external in£uences. Internal in£uences were grouped into two categories: spirituality and time in life. External in£uences that were identi¢ed included signi¢cant others, HCP, family, friends, and others with VIN. Internal In£uences Spirituality appeared as a positive in£uence. Participants discussed the importance of God and prayer, and others in the group looked up to and admired the strong faith and testimony of one participant who spoke strongly of her faith. This participant’s experience not only demonstrates the in£uence of faith but also age; she was older and did not experience much e¡ect from VIN. Time in life is de¢ned as age, maturity level, and marital status. The youngest participant spoke of her di⁄culty relating to others and feeling like she may never get married because of anxiety. She discussed her di⁄culty in relating to others her own age, feeling like they would not understand. In contrast, the eldest participant felt comfortable in her relationship and discussed being at ease with her diagnosis and that it had not changed her relationship or way of living. External In£uences The woman’s signi¢cant other was found to be a positive in£uence with only minimal negative comments noted. The women with signi¢cant others
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found them to be supportive through their experiences with VIN. One participant noted the reaction of the HCP to her having a STI prompted fears about her husband’s perceptions of her disease: ‘‘The doctors, all the way up to Dr. X, they all made me feel like I was some kind of degenerate or something because I’ve got this sexually transmitted disease . . . and my husband . . . looking at me like ‘What have you been doing?’’’ The participants discussed the positive in£uences of their HCP but also spoke very adamantly about providers’ negative aspects. Of note, one participant repeatedly discussed her physician’s interaction with her and her perception that he never really talked to her. She believed her physician lacked sensitivity toward her. Another participant discussed di⁄culty with HCPs other than the one who was managing her VIN. She believed the other providers did not understand the diagnosis and she felt ashamed and guilty for having a condition related to an STI. Most negative comments were directed toward HCPs other than the surgeon who was treating their VIN. Although one participant was very adamant in her comments regarding her surgeon; she believed he lacked sensitivity and caring about her because she did not have cancer. She stated, ‘‘I probably seem fairly insigni¢cant to him [surgeon] because it’s no big deal. It’s treatable. We can take care of it. But it is a huge deal to me and it always will be, period. It always will be forever.’’ Other women felt positive about the diagnosing HCP and were grateful the VIN was found before it became cancer. A woman’s family had both negative and positive in£uences on her experience. Some women viewed their family as both a support system and a source of increased stress. Other participants chose not to rely on the support of family for fear that they would be judged because they had an STI-induced condition. One participant commented, ‘‘My parents they’re crazy about it. That’s all they talk about . . .’’ Another said, ‘‘I’ve got an amazing family. I’ve got an amazing support system. They worry just as much as I do, I’m sure.’’ A third woman reported, ‘‘I would not dare tell my sister because she’s too nosy. I don’t want her to know nothing about it. She’d just question me.’’ Participants did not discuss the negative or positive in£uence of friends in much detail during the focus groups. Most comments from participants were negative. These comments focused on fear of judgmental reactions, such as ‘‘Oh, well, see that’s what
JOGNN, 37, 640-646; 2008. DOI: 10.1111/j.1552-6909.2008.00291.x
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Likes, W. M., Russell, C., and Tillmanns, T.
you get,’’ as one participant’s friend responded to her when she con¢ded to her about the STI-induced nature of her condition. Other women who had been diagnosed with VIN were found to be a negative in£uence. None of the participants had known anyone who had VIN, which was interesting considering that they were all treated at the same clinic. Several participants had sought out online support groups, but reported that the information they received frightened them. Not knowing anything about VIN was troubling, but reading about excision was frightening.
Discussion Previous studies have identi¢ed an association between vulvar surgery and signi¢cant sexual dysfunction and depression (Andreasson et al., 1986; Green et al., 2000; Thuesen et al., 1992). It has been postulated that these problems are related to pre-existing depression, poor body image, and relationship satisfaction (Green et al.). No published study could be found that used a qualitative focus group approach to exploring women’s experiences with a diagnosis of VIN. Limitations of this study include the variability of length of time from vulvar excision and the small number of participants; however, much information was gleaned about their experiences. Women with VIN who have undergone a vulvar excision commonly experience recurrence and the need to undergo repeated vulvar excision. The trajectory they experience is cyclic in nature due to these recurrences, yet these women reported minimal education on self-care measures and vulvar self-exams. The women in this study were not educated on how to perform vulvar self-exams or recognize symptoms of possible recurrence. The women also expressed a need to better understand their diagnosis and receive written materials on the VIN trajectory. Appropriate educational level materials should be developed on VIN to ensure that women understand their diagnosis and what they may expect in the future. Most participants were not aware of the recurrent nature of their diagnosis. Health care providers need to educate women on the high recurrence rate of VIN and the need for continued screening by an experienced HCP in order to identify recurrences early. Health care providers can be a strong in£uence on the woman’s experience after vulvar excision, and they need to be educated and updated on VIN and its consequences. It has been found that women
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strongly value a caring HCP, de¢ned as one who treats women as equals and show respect for their individual life experiences and knowledge (Alexander, 2004). Health care providers should remain sensitive to these women and educate them that although VIN is commonly caused by an STI, HPV, this virus is common and not necessarily a disease of promiscuous women. If desired by a woman, it would be helpful to include signi¢cant others in the diagnosis and treatment process of VIN so these women can utilize their support systems appropriately. Studies have found that 30% to 41% of women with VIN after vulvar surgery report a decline in relationship satisfaction; therefore it is imperative that relationships are evaluated in this population and interventions discussed to maintain a positive relationship (Andreasson et al., 1986; Tamburini et al., 1986). These data might lead to the conclusion that having a steady supportive relationship (regardless of age) can have a positive in£uence on a woman’s experience after vulvar excision. Education targeted for general practitioners and specialists should occur so that they can better understand the diagnosis of VIN and its impact on women. Better support networks of women diagnosed with VIN should be developed so that these women may support each other in a positive atmosphere. Although the women in this study reported that the Internet support groups caused them greater anxiety, the women reported that they found the focus groups and meeting other women with VIN as helpful. A few women exchanged phone numbers so they could remain in contact. Further research should be conducted on larger groups of women with VIN to obtain a more global perspective of the experiences of women with VIN. This might be accomplished through multisite studies. Understanding the e¡ects of surgical excision for women with VIN could facilitate the development of interventions designed to enhance QOL. Studies should focus on their experiences and interventions to assist these women with a disease that may continue throughout their lifespan. Educational materials should be developed and tested that can help these women and others understand the diagnosis and nature of the disease.
Acknowledgments Supported by pilot funding from the University of Tennessee Health Science Center, College of Nursing.
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