The patient’s voice: What are the views of women on living with pelvic floor problems following successful treatment for pelvic cancers?

Abstract

BACKGROUND: Pelvic cancers in women are often treated using surgery and radiotherapy alone or in combination. There is evidence that this may result in pelvic floor dysfunctions (PFDs).

PURPOSE: This qualitative study aimed to explore the impact of pelvic floor dysfunctions on cancer survivors.

METHODS: Survivors of gynaecology or colorectal cancers were invited to participate in this study if they were: more than one year post treatment completion; in remission; and symptomatic of PFD. Semi-stuctured interviews were conducted (n = 12), with questions posed around the impact of PFD symptoms. Interviews were transcribed verbatim and analysed using thematic analysis.

RESULTS: All participants reported lifestyle compromises around planning and control activities. However, this was underpinned by a determination not to allow PFD to abolish social interactions. The degree of acceptance varied: in some cases there was a high level of tolerance and resignation to symptoms. However, there was also intolerance of PFD symptoms, especially bowel control and sexual dysfunction, sometimes expressed by the same individual.

Women frequently referred to emotions caused by PFD: frustration, worry, lack of confidence, embarrassment. Some noted effects of their symptoms on intimate and other relationships. Communication with health professionals about PFD was inconsistent.

CONCLUSIONS: Symptoms of PFD following successful pelvic cancer treatment can limit female survivors fully engaging in normal life. Alteration in lifestyle activities can accommodate symptoms, but there is consequent emotional impact, and effect on friends and family. There is a reluctance exists to allow symptoms to prevent social interactions altogether.

Keywords

Cancer survivorship pelvic floor dysfunction pelvic cancer gynaecology cancer colorectal cancer

1 Introduction

Women with cancers of the endometrium, cervix, rectum or anus may be treated with combinations of surgery, radiotherapy, or chemotherapy. With improved survival rates [1, 2], there is however evidence for various PFDs arising as a result of surgery and/or radiotherapy in the pelvis [3 –14].

The pelvic floor is a collection of tissues spanning the opening within the bony pelvis, [15]. which contains major organs of excretion, micturition and sexual function. A delicate balance between the autonomic system controlling organ function and the somatic nervous system allowing volitional control over bodily functions exists within the pelvis [16].

Successful treatment of pelvic cancer can cause significant changes to the functioning of this area [17 –19]. For example, urinary incontinence has been reported in 80% of women treated for endometrial cancer, with more severe symptoms and impact on quality of life (QoL) in those who had adjuvant radiation therapy [3]. Hazewinkel et al. [10] reported more pelvic floor symptoms in cervical cancer patients compared to a control group, with more bothersome symptoms also in those treated with radiotherapy. The prevalence of urinary incontinence in women following surgery for cervical cancer increased from 14.8% to 31.2% one year post-surgery [20]. Pelvic floor symptoms in women following treatment for rectal cancer have been reported at rates of 60% [7]. 12 of 20 sexually active patients complained of dyspareunia following surgery and adjuvant radiotherapy for management of endometrial carcinoma [21]. Many patients post hysterectomy for endometrial cancer had more than one PFD [22].

Available information suggests significant negative impact [7 , 24], but there is currently a lack of knowledge regarding the effects of PFD on QoL in this cohort [7 , 25]. Patients do not always report these problems to their health care providers [26], and clinicians may underestimate symptoms [27]. Additionally, under-representation of colorectal and gynaecological cancers in survivorship research has been highlighted [28], so this group is relatively unknown.

The impact on QoL of PFDs in the general female population is well recognised [29–36 , 37]. In the context of having survived cancer, PFD may be seen as relatively trivial. However, in the context of resuming normal living, the symptoms experienced by survivors may be significant.

It has been suggested that cancer survivors inhabit the “ambiguous space between the well and the sick” and the sequelae of having had any cancer are profound [38]. It is therefore important to explore PFD in the context of cancer survivorship.

This study proposed to examine the views of women who had been successfully treated for pelvic cancer and who admitted to consequent changes in bowel, bladder or sexual function, in the context of their feelings about these residual symptoms.

2 Methods

2.1 Study design

This was a qualitative study designed to investigate the impact of living with PFD following successful treatment for pelvic cancer [28]. We aimed to examine patients perspectives of living with persistent side-effects of cancer treatment. A qualitative approach was considered to be the most appropriate way to gather this data. The sensitive nature of the issues involved was considered by the authors, and an initial plan to undertake focus groups was abandoned in favour of individual interviews [39] using a thematic analysis approach [40]. As it was intended to ask participants about several areas of pelvic floor function it was believed that the fluidity of the semi-structured interview was most appropriate [39].

Ethics approval was granted by the Mater Misercordiae University Hospital Research and Ethics Committee (Reference 1/378/1429). Detailed written information was given, and signed informed consent was obtained from each participant.

2.2 Recruitment

Recruitment was via referral from colorectal and gynaecology teams and selection from cancer databases in a large urban teaching hospital. Potential participants were approached in writing initially and then by telephone. The background and purpose of the study was explained. A brief screening for the presence of symptoms of PFD was carried out. If the woman was symptomatic, attributed her symptoms to her cancer treatment, and willing to participate, she was enrolled to the study.

2.3 Inclusion and exclusion criteria

Participants were eligible for inclusion if they were: female; between 18 and 65; had completed treatment for cancer of the rectum, anus, endometrium, or cervix more than one year previously; were currently in remission; had no cognitive problems; and had symptoms of PFD which they attributed to cancer treatment. They were required to have functional use of bladder and bowel. They were ineligible if they had current active cancer, or condititions such as diabetes mellitus or inflammatory bowel disease, which might in themselves alter bladder or bowel function independently of the residual effects of cancer treatment. This exclusion criterion assured the researchers that the symptoms being experienced were more likely to be attributable to cancer treatment.

2.4 Data collection

Each patient attended a semi-structured interview conducted by the principal author (PM), a Clinical Specialist Physiotherapist in Pelvic Floor Rehabilitation, observed by TC or a female alternate. This was to assure objectivity and monitor data saturation. The interview schedule was developed from the principal authors extensive clinical experience and with reference to the relevant literature in the area [4 , 41–46]. Participants were asked: “since your treatment for cancer, what is different or difficult about your bladder control? Does this affect what you drink? Does this affect where you go? How do you feel about this?” Similar questions were asked about bowel control and sexual function. These specific questions were asked to prompt discussion. Questions were asked about lifestyle compromises based on clinical experience. The follow-on open-ended questions then dealt with the impact, if any, of these symptoms, but the direction of the interview was guided by patients’ answers. Time and space were provided to allow open discussion.

When the degree to which patients accepted their PFD symptoms became apparent, a question was added on whether patients would be interested in treatment, should it be available.

Interviews were audio-recorded by dictaphone (Olympus VN-8500PC Digital Voice Recorder). Data saturation was considered to have been reached after 12 patients were interviewed, by agreement between the two principal researchers.

Interviews took place in a private room in the hospital.

2.5 Data analysis

Recorded data were transcribed verbatim. Participants were allocated a study number to ensure anonymity.

Having considered available approaches [40, 47], the flexibility of thematic analysis techniques were considered appropriate to identify, analyse, and report patterns within the data corpus for this study [40]. Transcripts were read initially to familiarize the authors with the data [40]. Through subsequent rereading, initial coding categories were assigned and potential themes identified and grouped.

Transcripts were manually coded independently by PM and TC. The two analyses were compared for areas of agreement and disagreement. Disagreed items were discussed until agreeement was reached and themes were further defined. A random sample of transcripts was then recoded by PM, TC and RG using the refined theme definitions [48]. A final recoding was then carried out on all transcripts.

3 Results

Twelve women completed interviews (Table 1). Two had been treated for colorectal and ten for gynaecology cancers. They ranged in age from 34–65 (mean 49.9) years.

As per our inclusion criteria, all admitted to at least one PFD symptom, which they attributed to their treatment for cancer.

Table 1
Patient details

Patient No^* Primary cancer Treatment Time (mo) since

treatment

1 Rectal Surgery, radiotherapy 46

2 Cervical Radiotherapy, chemotherapy 28

3 Anal Surgery 37

4 Uterus Surgery, radiotherapy 36

5 Cervical Surgery, radiotherapy 22

6 Cervical Surgery, radiotherapy, chemotherapy 57

7 Cervical Chemotherapy, radiation therapy 35

8 Cervical Surgery, radiation therapy 55

9 Endometrial Surgery, radiotherapy 51

10 Cervical Chemotherapy, radiotherapy 48

11 Cervical Surgery 40

12 Cervical Surgery 35

Patient No^*	Primary cancer	Treatment	Time (mo) since
1	Rectal	Surgery, radiotherapy	46
2	Cervical	Radiotherapy, chemotherapy	28
3	Anal	Surgery	37
4	Uterus	Surgery, radiotherapy	36
5	Cervical	Surgery, radiotherapy	22
6	Cervical	Surgery, radiotherapy, chemotherapy	57
7	Cervical	Chemotherapy, radiation therapy	35
8	Cervical	Surgery, radiation therapy	55
9	Endometrial	Surgery, radiotherapy	51
10	Cervical	Chemotherapy, radiotherapy	48
11	Cervical	Surgery	40
12	Cervical	Surgery	35

^*No. as used in text for quotations.

This group of women were busy with work, family and social commitments. They all admitted some degree of lifestyle compromise (sub-themes lifestyle changes, lifestyle planning, determination not to let symptoms dictate lifestyle); and emotional impact. They reported varying levels of acceptance (resignation, tolerance, intolerance) of their changed circumstances. There was variation in whether or not they had communicated these symptoms to health care professionals and themes around concerns for family and friends emerged.

3.1 Lifestyle compromise

Interviewees were asked if they made lifestyle compromises because of their PFD symptoms.

3.1.1 Lifestyle changes

Many women with bowel symptoms noted changes in how they tolerated foods: “you know that people say fibre makes you regular ... allbrans and things, I couldn’t touch them” (Patient 1). “But, I never drink water or tea before I go to bed or, from about seven in the evening… As much as I’d like, I don’t, because I have wet the bed ... . I have wet the bed.” (Patient 3)

While most women in intimate relationships remained sexually active, one woman lamented the fact that she had ceased having sexual intercourse because of dyspareunia “I dont have intercourse ... its too sore ” (Patient 12)

For Patient 3, with multiple co-morbidities, bowel and bladder difficulties merely added to her inclination to minimise her trips outside of her house, rather than being the primary cause.

3.1.2 Lifestyle planning

For many, social outings included extensive planning. “In my car, at all times, there is a complete change of clothes and sanitary things, in the boot… in my handbag, at all times, I would have a selection of small things you know. And if we go anywhere, the first thing I am checking is the loos” (Patient 1). Many limited where they would go and under what circumstances – “at the weekend I went out and had a meal ... I can’t leave that restaurant for half an hour or so because I need to go to the toilet” reported one woman with bowel control issues (Patient 2). “If you are going away for the weekend to a hotel, like, I tend to bring sheets with me” (Patient 12). “If I go to the cinema I have to have the end seat. If I go to a restaurant, I let everyone sit inside me so I am quicker and freer to go” (Patient 1).

One patient, who had undergone a prior course of physiotherapy for PFD, noted positive changes in lifestyle planning as symptoms abated. She no longer needed to bring changes of clothes: “Whereas now I’d never, I might have panty liners in my bag, but that’d be about it” (Patient 10).

3.1.3 Determination not to allow symptoms to dictate lifestyle

A subtheme that emerged around lifestyle was that several participants explicitly stated that they would not allow PFD to cause major disruption to social activities. While they were willing to make compromises and plan around social outings, they refused to let PFD dictate: “ I don’t keep track of it because you could drive yourself mad doing that” (Patient 4). “I would be very like that anyway, I would be inclined to feel that your mind has huge impact on your body, and I learned that from very early on, so I think that from the actual diagnosis through the treatment and out the other end, my mind has been very focussed on where I am going and health and well being, rather than what is actually happening” (Patient 6).

3.2 Degree of acceptance

Acceptance of PFD ranged across tolerance to resignation to intolerance. Some women made conflicting statements within their interview with regard to their degree of acceptance, suggesting a degree of internal conflict. Others were tolerant of one type of symptom e.g. bladder but not bowel. In other cases the acceptance, or tolerance, of PFD seemed to be facilicated only by rigid adherance to the lifestyle compromises mentioned above.

3.2.1 Resignation

Women were resigned to bowel – “the new normal” (Patient 1), bladder – “after a matter of time, you know its not going to change so you have to focus and say well this is part of my life now and I have to just get on with it” (Patient 7) and sexual symptoms “It’ll never be the same” (Patient 2), and appeared quite resigned – “I did have cancer, now I’m cured from it, so this is just one of the little drawbacks…you just look at your kids...you’re here for them” (Patient 5).

3.2.2 Tolerance

Three women were very tolerant of bladder dysfunction (in 2 cases pre-existing):“By the time I get to the toilet, I’ve gone. But that wouldn’t be a major problem” (Patient 2). It was also noted that bladder dysfunction is something that they might have expected in any event: “I think it was probably going that way” (Patient 9).

3.2.3 Intolerance

On the other hand, some of the interviewees were very articulate around difficulty accepting PFD. “And I know its kind of you say oh God, should I have to be like this, I mean like, I’m only like 46, do I have to be like this for the rest of my life, you know?” (Patient 5), speaking about her bladder; “It’s a total, massive change for me and to this day I have great difficulty dealing with it” (Patient 1), and “Well you know, its not nice like really, if you’re going out somewhere and you feel that this is going to happen, you know” (Patient 3), in relation to bowel control. With regard to changes in sexual function, some women were also intolerant: “You know, I don’t want it to be like that” (Patient 5).

3.3 Emotional impact

We asked particpants how they felt about the changes in their bladder, bowel, or sexual function. All referred to some extent to negative emotions associated with pelvic floor symptoms. Worry, anxiety and embarrassment were frequently mentioned. Wondering “Is today the day” that intermittent bowel symptoms would strike caused such anxiety on a plane journey that Patient 1 referred to subsequent “mental trauma”. A day on the beach with her family was something that caused another “dread” (Patient 2), again in relation to bowel symptoms. One patient alluded to the difficulty in putting her cancer history behind her because of the lingering presence of PFD; she found this “frustrating”: “Because you’re trying to move forward with your life, move forward with your children and your husband and that, and these little things keep bringing you back and annoying you” (Patient 5).

Emotional impact of sexual changes were noted too. One woman felt “only half a woman. Because I used to enjoy sex with him. And now its how would you say – tough” (Patient 5); while for another, “it would have made me quite nervous. The whole issue of a new partner and everything” (Patient 8) and indeed lack of confidence around sexuality emerged from several patients.

3.4 Effects on intimate relationships/ family/friends

Many of our group expressed concern for their intimate partners about their sexual experience with PFD: “like all men, he feels a bit let down” (Patient 7);“but it can be very frustrating and I know it’s frustrating for him but he doesn’t say it” (Patient 5).

For some, it was the change in the sexual experience itself, but for one woman, while she was happy with her sexual function, her severe bowel symptoms impacted on her willingness to be sexually involved on certain occasions: “You wouldn’t have sex because it would interfere, or it would upset things” (Patient 1). Effects on intimate relationships were mentioned in the context of both changes in the womans sexual desire: “It probably wouldn’t be as exciting as it used to be. I wouldn’t be, you know, totally interested all the time” (Patient 9), and for her this meant: “I dont feel I’m fulfilling my duty as a partner, for my husband”, and physical changes “I would say that full penetration is difficult.” (Patient 6).

3.4.1 Effect on family/friends

The support of family members and friends in acknowledging the presence of PFD and supporting the patient in managing/disguising their symptoms was very important to some. One woman relied upon her adult children: “So, the amount of times I would go for a walk, and I’d have to phone home for one of the kids to come and pick me up” (Patient 1), another appreciated that her close circle of friends always understood if she had to leave a meal and spend some time in the bathroom (Patient 5).

3.5 Communication with health professionals/ help seeking

Some had discussed aspects of their PFD with GPs or other clinicians. Feedback from these contacts was mixed. Many were delighted with the support they received. Others felt that the timing of information was not always managed well, e.g. one patient received instruction in pelvic floor exercise when she was undergoing radiotherapy. At that time she felt unable to take the advice on board because of the difficulties of undergoing treatment (Patient 2). Others indicated that advice given for specific problems did not work: “usually you’re to increase your fibre, but he said to me to do the opposite, not to take much fibre, but it doesn’t make a difference.” (Patient 7). Another had made several unsuccessful attempts to address sexual dysfunction “I’ve spoken to my own doctor, asked her if there was anything like men can get, viagra, no, ... . So there was nothing.” (Patient 12). In these instances, there seemed to be no follow-through from either the patient or the health care professional. There was a sense that these problems were not always given priority by the patient or clinician: “Now I actually told my own doctor but they just said we’ll come back to that again ... . they said ah, we”ll deal with it the next time, and the next time sure I just forgot all about it” (Patient 11).

Some patients had never discussed symptoms with any clinician: “no, no, I just forged ahead!” (Patient 6) (in relation to dyspareunia).

Of the five patients asked directly whether they would be interested in treatment were it available, four were interested and one was equivocal.

4 Discussion

The aim of this study was to gain an insight into how women felt about persistent PFD while transitioning from the treatment to post treatment phase of a pelvic cancer journey. It is the precursor to a feasibility study looking at the efficacy of pelvic floor rehabilitation as a remedial option for this patient cohort, the results of which will be reported later. Our interest was in how living with the particular complication of PFD might impact on survivorship. For this reason no effort was made to quantify the severity of PFD symptoms. The qualitative methodology was appropriate to allow us to explore the multilayered nature of PFD in this group. To our knowledge, this is the first qualitive study addressing the patients perspective on all aspects of changed pelvic floor function following successful treatment for pelvic cancer in Ireland. It addresses PFDs across all pelvic organ systems, in line with current thinking [49].

The National Coalition for Cancer Survivorship defined cancer survivorship as extending from “the time of diagnosis and for the balance of life” [50]. An emphasis on QoL during survivorship has been advocated [38]. The sequelae of cancer treatment that may impact on QoL into survivorship are many and varied [51]. However, one complication particularly pertinent to pelvic cancer treatment is PFD. In Ireland, the 17-year prevalence for female colorectal cancer has been reported as 6,222; cervical cancer 2,395;corpus uteri 3,089 [2]. It may be assumed that a significant proportion of these are in remission but suffering from PFD. As this study and others [26] have found, PFD may not always be volunteered in the clinical setting, so the awareness necessary for clinicians to comprehensively treat and advocate for their patients may have to come from other sources if we are to achieve the goal of placing the patient at the heart of decisions around care [52]. In contrast to this project, many published studies looking at QoL and PFD in women who have survived pelvic cancers have looked at these issues as outcome measures for the comparison of different treatment interventions, rather than as lived experience [24 , 53–55].

In our study, a theme which emerged strongly was determination not to allow symptoms of PFD stop these women attending to demands of childcare, travel and socialising by utilising various coping strategies. Such modifications are familiar to health care professionals working with PFD [24 , 32]. Egan et al. [51] have noted that assessment of participation restriction, as opposed to quality of life measures alone, is notably absent from the literature looking at rehabilitation interventions for cancer complications. This is a very pertinent point in relation to cancer patients suffering from PFD, given the tendency of PFD symptoms to promote social isolation [56], and our study supports the point made by both authors and which has been made in other areas of cancer rehabilitation [57].

The degree of acceptance of PFD symptoms was variable. Some women minimised their symptoms and were tolerant of them, particularly bladder control issues. Here, there was a sub-theme of determination to not allow something as trivial as continence interfere with daily living, which carried over into the lifestyle modifications discussed above. The phenomenon “response shift” where there is a change in self-assessment of symptom impact in the wake of a cancer diagnosis has been described [58]. There was a degree of resignation among some women and, alongside some dissatisfaction, a sense that PFD was a reasonable price to pay to be cancer free. This theme has also emerged in studies by other workers [26]. However, others were extremely articulate in expressing their difficulty accepting their situation.

These women did express negative emotions associated with PFD. Body image disturbance has been found to be associated with more severe pelvic floor symptoms [23], in a study that considered bowel and bladder dysfunction following treatment for gynaecology cancer. With regard to sexuality, Cleary and Hegarty [59] describe the effects that gynaecological cancer and treatment are likely to have on on sexual self-concept, relationships and function. The multifaceted and complex nature of sexual dysfunction in gynaecology cancer patients has been described [60, 61]. We asked those women with sexual dysfunction how they felt about it. In relation to the emotional impact associated with sexual situations, in this study women described nervousness and loss of confidence, and embarrassment with regards to continence issues related to sexual situations.

These issues unsurprisingly carried over into the theme of effects on intimate relationships. A cervical cancer diagnosis, with all of its implications, affects the partner of the woman involved in many ways [61], and this is probably true of other pelvic cancers. It affects the relationship also [59, 62]. It is the physical aspects of sexual dysfunction which are associated with PFD however [63, 64] and in-depth assessment of changes in sexuality was outside the scope of this study. Although sexual changes can be categorised into physical, psychological and social, the categories cannot be neatly delineated in the lived experience. In our study, most women already in intimate relationships continued to be sexually active albeit with various modifications. In one retrospective study in a group of gynaecology malignancy patients, the physical symptom of dyspareunia was the most frequently reported sexual dysfunction issue [13]. Women in our study expressed physical sexual changes, such as tightness of the vagina, leading to impact on intimate relationships and thereby on partners. However, our group also described psychological changes that impacted relationships and how they interacted with their partner. Loss of libido was often expressed in relation to its effect on the relationship. The effect of bowel continence issues affecting an intimate relationship was noted by one woman. This contrasts with a study that found that although women with faecal incontinence scored lower in sexual domains, it did not reduce their sexual activity [65]. Soiling during intercourse was reported as an issue for women after surgery for rectal cancer, but not whether it prevented them engaging in sexual activity [66]. PFD does not only impact on intimate relationships. The effects of PFD on friends and colleagues in the life of the patient has been conceptualised [29]. Good social networks have been found to be integral to successful recovery from prostate cancer [67]. Some of our group noted the importance of having friends who understood and assisted them through awkward situations.

Although many of this group had mentioned some aspects of their PFD symptoms to health care providers, the response was variable. Other authors have suggested that the clinical environment can be a barrier to women discussing personal issues [41]. Other reasons for gynaecology oncology patients failing to report PFD have been investigated [26]. These authors concluded pelvic floor symptoms being bearable in the light of a cancer diagnosis, a perception that specialists did not do anything about the symptoms; patients being reluctant to go to a hospital or physician; that the patient and/or physician were unaware of possible treatments, and patient self reliance as factors. Of concern is the finding that physicians tend to underrate symptoms compared with patients [27]. The findings of this study supports work already done in the field. In our planning, we did anticipate expressions of unmet need for services to address PFD. When initial interviews did not strongly support this, we included a question asking if the woman would avail of treatment, should it be available. The majority of those asked did indicate that they would be interested.

4.1 Clinical/policy implications

With improving survival, cancer management begins to resemble management of chronic disease [68], so it is important that clinicians know what is important to patients [69]. This study underlines that clinicians cannot assume that women who appear to be coping well would not appreciate sensitive questioning around the presence and impact of PFD.

4.2 Study limitations

The numbers in this study were small. It was a heterogenous group gleaned from gynaecology and colorectal specialities, with a variety of diagnoses, therapeutic interventions, and range of PFDs. This limits its generalisability. However, it gives us insight into how women manage transition from active cancer treatment to post-treatment in relation to living with changes in pelvic floor function, which was our primary aim.

The background of the principal author in pelvic floor rehabilitation may have influenced interpretation of patients answers. This was acknowledged at design stage and as the work progressed. We attempted to provide a balancing perspective by the presence of TC at most interviews. TC also independently coded and analysed transcripts. Our different backgrounds provided a mix of clinical knowledge and research objectivity which we endeavoured to apply and thus mitigate potential for bias.

Another limitation is that member checking of our transcripts was not undertaken.

Because of the qualitative nature of this study, no attempt was made to quantify severity of pelvic floor symptoms. It could be argued that the high degree of tolerance of some of the women to their symptoms was simply that in this cohort, symptoms were simply not that severe. However, the reluctance of gynaecologic cancer survivors to seek help for PFD has been noted elsewhere [26], and discussion of management options for minor symptoms might still be appreciated.

Finally, our study raises the question of whether the QoL implications and treatment needs relating to PFD in this group differs from those in other cohorts, e.g. the obstetric population. The authors would suggest this as a direction for future research.

5 Conclusion

This study has described the views of women living with PFD following successful treatment for pelvic cancer. Resignation to, and tolerance of symptoms is marked, and a determination to not allow symptoms to dominate by adhering firmly to various lifestyle compromises and control activities. A more comprehensive approach by clinicians might allow for validation of problems and exploration of management options.

Conflict of interest

All authors declare no conflict of interest.

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