Recently, several reviews have been evaluating the benefits of standardized outpatient follow-up for gynecologic cancer patients. All studies have reached the same conclusion: The follow-up programs do not improve survival.1–5 Based on this, we need to reconsider the use of time, resources, and money in the health care system. And we need to take the patients’ needs and preferences into account.
Negative effects of standardized follow-up programs have been suggested, as follow-up may maintain the patients’ status as cancer patients and thus reducing the quality of life (QoL).6 Furthermore, delay in diagnosis might be a serious consequence of the present standardized follow-up programs.7
The current model for follow-up after treatment for gynecologic cancer is characterized by initially frequent visits during the first year and then with gradually increasing intervals. In Denmark, follow-up stops after 5 years without recurrence.
A recent review concluded that, because there is no evidence of improved survival among Danish women attending a follow-up program after primary treatment of ovarian or endometrial cancer, the concept of follow-up needs revision.8 A Canadian study has found that even intensive follow-up of endometrial cancer patients does not improve survival.5
As pointed out by the 26th annual report from 2006 of FIGO (International Federation of Gynecology and Obstetrics), it is time to shift focus from recurrence to QoL.9 The recent literature also suggest that it is time for a change in the follow-up paradigm. Follow-up programs should be evidence based, individualized, and dependent on patient preferences.3
The objectives of this article were to investigate:
- (1) What do we know about QoL of the gynecologic cancer survivors?
- (2) Which factors may predict QoL after cancer?
- (3) What is known about the gynecologic cancer patients’ needs and preferences regarding follow-up?
METHODS AND MATERIALS
A systematic literature search was performed in the following databases: MEDLINE (PubMed), Bibliotek.dk, CINAHL, Cochrane, EMBASE, PsycINFO, and SveMed+. We searched the period 1995–2012 for English-language literature. The search was made during July-February 2012. When possible, the search was made using MeSH terms, using the keywords: “ovarian neoplasms,” “endometrial neoplasms,” “uterine cervical neoplasms,” “breast neoplasms,” “quality of life,” “social adjustment,” “rehabilitation,” “patient satisfaction,” “patient needs,” “body image,” “adaptation,” “follow-up.” Additional reports were collected by systematically viewing the reference lists of the retrieved articles.
Study Selection Criteria
Mainly studies describing gynecologic cancer patients who had curative intended surgery as primary treatment were included. With focus on 3 main topics: “quality of life,” “needs and preferences,” and “predictors of quality of life,” we ended up with a total of 57 articles.
This review includes quantitative as well as qualitative studies, because the outcomes “quality of life” and “needs and preferences” are assessed by both methods in the literature.
What Do We Know About QoL of the Low-Stage Gynecologic Cancer Survivors?
Quality of life in this context is described by different scales and methods. Furthermore, many studies do not distinguish between cancer types and treatment modalities. This makes it very difficult to compare and draw conclusions based on the existing literature.
A Norwegian case-control study from 2007 demonstrated that, despite a relatively high prevalence of pain (26%), the overall QoL of long-term gynecologic cancer survivors was equal to an age-matched control group10 (Table 1). Other studies had similar findings.11,12 Pearman13 found that QoL of gynecologic cancer patients was most negatively affected around time of diagnosis and treatment. Quality of life appears to improve over time. At 6 to 12 months after treatment, there was no difference in overall QoL compared with age-matched controls.13 Wenzel et al14 found that QoL in the long term was not impaired compared with age-matched controls for cervical cancer patients. A review of the literature of QoL of long-term gynecologic cancer survivors stated that, in general, the long-term survivors have a good QoL.15
To our knowledge, only 1 study describes a decrease in long-term QoL after ovarian cancer. Many of the patients in this study had additional medical oncologic treatment due to recurrence of the disease. This might explain part of the decrease in self-reported QoL.16
The existing literature suggests a negative effect on sexual adjustment after a gynecologic cancer. Burns et al17 found that 2 to 3 years after treatment, the patients still had psychosexual difficulties. Levin et al18 found that sexual morbidity was a predictor of poor outcomes. Because of this connection between sexuality and QoL, they concluded that there is a need for integration of sexual rehabilitation in routine follow-up.
Even though Gotay et al19 found that about half of the patients reported a negative effect on the sexual adjustment questionnaire, the self-reported QoL remained high.
It is well known that a rather large percentage of the gynecologic cancer patients treated with radical hysterectomy are suffering from urinary incontinence after treatment.20 Further research is needed to conclude whether these urological adverse effects of treatment influence QoL.
Overall, it seems that QoL of the gynecologic cancer patients is not affected in the long term (Table 1). Cervical cancer has been associated with a negative effect on sexuality after radiotherapy. This was not found for endometrial or ovarian cancer patients.12
Which Factors May Predict QoL After Cancer?
Several predictors have been identified to influence QoL after gynecologic cancer (Table 2). An Australian study found a higher risk of depression and anxiety in patients with negative spiritual coping strategies compared with age-matched controls.21 Pessimism at time of diagnosis was clearly associated with anxiety and depression and health-related QoL after 3 months.22
Goncalves et al23 compared the level of anxiety and depression before examination for a possible ovarian cancer or a benign disease. Patients were evaluated before and after receiving diagnostic results and after 3 months. The anxiety level was highest before examination, then decreasing, and the same after 3 months in the 2 groups. So they concluded that clinical investigations are highly anxiety provoking, and the diagnosis of cancer did not significantly elevate or maintain the high levels of anxiety.23
Several studies have demonstrated that hope and positive coping were correlated to higher QoL scores and lower anxiety scores.24,25 Lai et al26 examined the role of mastery and neuroticism in predicting QoL among gynecologic cancer survivors. One hundred eighty-four patients participated in a prospective study, rating their QoL at time of diagnosis and after 1 year. They found that neuroticism at time of diagnosis was a predictor of poor emotional and physical well-being after 1 year.26 In addition, other studies have suggested that coping strategies may predict how well breast and gynecologic cancer patients deal with treatment adverse effects.27,28
Eisemann et al29 found that well-being at the time of diagnosis and at 1-year follow-up was highly correlated. Thus, well-being before treatment can be used as a predictor of well-being after treatment. A high score in sense of coherence was correlated to a better outcome on a QoL score after a gynecologic cancer.30–32
All patients, despite age, reported good adjustment to having had cancer, although younger patients had significantly worse adaptation than older survivors measured by Hospital Anxiety and Depression Scale.33
De Grooth et al34 found that marital status influences psychosocial concerns. Single women were more concerned about communication with the treatment team and adverse effects of the treatment, whereas partnered women had greater concerns in relation to sexuality and relationship.
A number of predictors of QoL in the long term after cancer have been identified (Table 2). The most important positive predictors seem to be rational coping strategies, high sense of coherence, and well-being at time of diagnosis. The most important negative predictors might be pessimism and neuroticism at time of diagnosis.
What Is Known About the Patients’ Needs, Expectations, and Preferences in a Follow-up Program After a Gynecologic Cancer?
In general, there is lack of information and evidence about the types of needs of these patients and whether they want help in fulfilling their unmet needs. A review35 from 2009 summarizing the literature on gynecologic cancer patients’ and health care professionals’ views on follow-up found that the patients’ greatest concern was fear of recurrence, and their greatest need was reassurance. The patients assumed that follow-up programs were designed to address these needs.35 Overall, the patients are highly satisfied with the follow-up program.36–38 They assume that the main purpose of routine follow-up is early detection of relapse. Therefore, they prefer seeing a specialist, although several studies have found that routine follow-up is not the desire of the majority of the patients, if they are told about the missing evidence on this area.35,38 It has been shown that many patients would actually prefer “point-of-need”-access.39
The professionals thought that the patients might be more likely to accept alternative follow-up models if fully explained the missing evidence for follow-up as it is today.35
The patients’ greatest concern is fear of recurrence.40 This fear is independent of the prognosis and the severity of the cancer.41,42 Several studies found that the most frequent reported unmet need is help with handling and living with the fear of recurrence.43 Some patients did not want help from the health professionals in dealing with their fear of recurrence.41,44,45
It seems that the patients tend to find the information they need by themselves, when they need it.46 Periodically, cervical cancer patients’ need for information was found to increase, and in those periods, their information-seeking behavior increased as well.47 The most important information for ovarian cancer patients at the time of diagnosis is information about prognosis, stage of disease, and treatment options, whereas information about psychosocial aspects and self-care is of less importance.48
There is a diversion between patients’ and health professionals’ aim of follow-up programs. Several patient needs have been identified (Table 3). By far, the most important is help in coping with fear of recurrence. The literature on this topic is limited, and further studies on the needs and preferences of gynecologic cancer patients are required.
Existing Literature on Breast Cancer Patients
Our knowledge on breast cancer patients’ QoL, needs, and preferences regarding follow-up is well described compared with gynecologic cancer patients.
Grunfeld et al53 randomized patients to either routine follow-up in a hospital setting or follow-up by their general practitioner (GP). They found no difference between the 2 groups in detection of recurrence, QoL, and patient satisfaction.
Another randomized trial compared “point-of-need access” versus routine follow-up. They found that point-of-need access is acceptable for the majority of patients. After 18 months of follow-up, patients in the point-of-need-access group did not wish to attend the regular follow-up program.54
When patients receive information about the low detection rate of recurrence in the routine follow-up, one third of the breast cancer patients preferred to exit the routine follow-up.55 Breast cancer patients were found to be equally satisfied with follow-up by either their GP or a specialist nurse.50–52
Patients with unmet needs for information were more likely to search for information on the Internet or to spend time in social support groups.56
The QoL of long-term gynecologic cancer survivors treated solely by radical surgery has been addressed in only a few studies, whereas many studies do not distinguish between patients treated by different treatment modalities—surgery, chemotherapy, or radiation therapy or a combination. We find this problematic, because they are diagnosed in different disease stages, and the adverse effects of treatment are very different as well, and therefore they do not necessarily have the same needs regarding follow-up. Moreover, as QoL is measured using many different rating scales in the literature, comparison between studies is almost impossible.57 Even though different rating scales are being used, the studies from all over the world (Scandinavia, Austria, Australia, United States, Syria, Hawaii) all find no change in QoL after cancer for the gynecologic cancer patients. One study from Canada finds a decrease in QoL after ovarian cancer. Many patients in this study had recurrence and thereby a greater fear and insecurity of the future. This might explain the decrease in QoL. But in conclusion, most studies across geography and culture have the same findings: long-term QoL is not impaired after low-stage gynecologic cancer.
Several randomized trials on breast cancer survivors have shown high patient satisfaction with follow-up performed by specialist nurses or GPs or follow-up by point-of-need access. When fully informed about the evidence on follow-up and recurrence, many breast cancer patients preferred not attending routine follow-up.
In general, the gynecologic cancer patients are highly satisfied with the follow-up program as well. The patients have a perception that the main purpose of routine follow-up is early detection of relapse.
Equally to the breast cancer patients, several studies have found that routine follow-up is not the desire of the majority of the gynecologic cancer patients, if they are told about the missing evidence on this area.
Much more research has been made on breast cancer survivors than gynecologic cancer survivors. But whether it is fair to draw parallels between these 2 patient groups is debatable. Both groups consist solely of women, but following surgery for a gynecologic cancer, the treatment adverse effects can, to a greater degree, affect the sexual life and cause urinary incontinence. For the breast cancer survivors, it is obvious when looking at them that they had surgery, if they had a mastectomy. Gynecologic diseases in general are still kind of a taboo. More research is needed on whether it is fair to compare the 2 patient groups or not.
Reviewing the literature, it seems that the factors with a negative influence on QoL are impaired sexual life and fear of recurrence. Coping with fear of recurrence seems to be the most important factor in determining QoL after a gynecologic cancer. So examining the patients’ coping style at time of diagnosis might help predict long-term QoL.
When the patients attend the standardized follow-up regimen, they get a lot of information, and they are being confronted with their diagnosis frequently. For some patients, this may bring them comfort, but it is fair to assume that, for others, this can induce or increase their fear of recurrence.
We found that psychosocial status at time of diagnosis might be associated with QoL and well-being in the long term. It seems that pessimism at time of diagnosis was associated with higher anxiety levels and depressive symptoms and impaired QoL. Neuroticism was also found to predict impaired QoL. Positive coping seems to be associated with improved QoL and better dealing with treatment adverse effects (eg, menopausal symptoms or urine incontinence) and lower anxiety scores.
Such factors could be useful pretreatment predictors for long-term QoL for the individual patient. Furthermore, the predictors might serve as important screening tools for identifying patients with specific rehabilitation needs.
Today, we know that attending a follow-up program does not improve survival for the patients with low-stage gynecologic cancer.1–5,8 We know that, for many patients, anxiety increases around the follow-up visits. Yet, we have continued performing the follow-up programs unchanged since the 1980s. So what are the advantages by having the patients attend the routine follow-up?
Looking at the professionals’ point of view, it is important to do quality control on the treatment (surgery) and to screen for adverse effects. Furthermore, they find the follow-up important to detect patients with psychosocial problems following cancer.
Seen from the patients’ point of view, they assume that the goal of follow-up is early detection of recurrence; therefore, follow-up gives them reassurance, confidence, and security. There is an important mismatch here, because the sense of security the patients get from the follow-up is a false security.
The negative adverse effects of the routine follow-up is, to some degree, obvious: It is really expensive! Specialists use a huge amount of time on these follow-ups. It is also problematic that the patients and the health professionals have different views on the purpose of the follow-up. Furthermore, many patients experience themselves as cancer patients as long as they attend a follow-up program, and their anxiety level rises around the time of the follow-up visits.
Fast-track regimens are applied in cancer surgery, and the length of hospitalization is constantly decreasing. In this initial phase of the treatment, patients may not be able to comprehend extensive information. This fact should be emphasized when designing new follow-up programs for gynecologic cancer patients—especially when treated by surgery alone.
In conclusion, even though long-term QoL is not impaired, the patients are struggling with fear of recurrence, and it seems that the way of coping with this fear is a possible predictor for long-term QoL after cancer. Other identified positive predictors are high sense of coherence and well-being at time of diagnosis. Negative predictors are pessimism and neuroticism. Such factors could be useful pretreatment predictors for long-term QoL for the individual patient. Furthermore, the predictors might serve as important screening tools for identifying patients with specific rehabilitation needs in the future.
There is a lack of evidence on QoL, needs, and preferences regarding follow-up of the survivors after a low-stage gynecologic cancer. During the last decades, patients are living longer with and after their cancer; thus, having cancer can be compared with any other chronic illness. Because of the rising number of cancer survivors, the routine follow-up as it looks today demands a lot of resources, and it is extremely expensive. The quality of the follow-up regimen is questionable, and it is not evidence based. It is extremely important to optimize the follow-up program and move focus to life quality. There is a need for an evidence-based strategy regarding follow-up for low-risk gynecologic cancer patients.
1. Vistad I, Moy BW, Salvesen HB, et al.. Follow-up
routines in gynecological cancer—time for a change? Acta Obstet Gynecol Scand
. 2011; 90: 707–718.
2. Sartori E, Pasinetti B, Chiudinelli F, et al.. Surveillance procedures for patients treated for endometrial cancer: a review
of the literature. Int J Gynecol Cancer
. 2010; 20: 985–992.
3. Fung-Kee-Fung M, Dodge J, Elit L, et al.. Follow-up
after primary therapy for endometrial cancer: a systematic review
. Gynecol Oncol
. 2006; 101: 520–529.
4. Dalton SO, Bidstrup PE, Johansen C. Rehabilitation of cancer patients: needed, but how? Acta Oncol
. 2011; 50: 163–166.
5. Agboola OO, Grunfeld E, Coyle D, et al.. Costs and benefits of routine follow-up
after curative treatment for endometrial cancer. CMAJ
. 1997; 157: 879–886.
6. Fang CY, Daly MB, Miller SM, et al.. Coping with ovarian cancer risk: the moderating effects of perceived control on coping and adjustment. Br J Health Psychol
. 2006; 11 (Pt 4): 561–580.
7. Olaitan A, Murdoch J, Anderson R, et al.. A critical evaluation of current protocols for the follow-up
of women treated for gynecological malignancies: a pilot study. Int J Gynecol Cancer
. 2001; 11: 349–353.
8. Lajer H, Jensen MB, Kilsmark J, et al.. The value of gynecologic cancer follow-up
: evidence-based ignorance? Int J Gynecol Cancer
. 2010; 20: 1307–1320.
9. Penson RT, Wenzel LB, Vergote I, et al.. Quality of life
considerations in gynecologic cancer. FIGO 26th Annual Report on the Results of Treatment in Gynecological Cancer. Int J Gynaecol Obstet
. 2006; 95(suppl 1): S247–S257.
10. Rannestad T, Skjeldestad FE. Pain and quality of life
among long-term gynecological cancer survivors: a population-based case-control study. Acta Obstet Gynecol Scand
. 2007; 86: 1510–1516.
11. Baillie L. Patient dignity in an acute hospital setting: a case study. Int J Nurs Stud
. 2009; 46: 23–36.
12. Greimel ER, Winter R, Kapp KS, et al.. Quality of life
and sexual functioning after cervical cancer treatment: a long-term follow-up
. 2009; 18: 476–482.
13. Pearman T. Quality of life
and psychosocial adjustment in gynecologic cancer survivors
. Health Qual Life Outcomes
. 2003; 1: 33.
14. Wenzel L, DeAlba I, Habbal R, et al.. Quality of life
in long-term cervical cancer survivors. Gynecol Oncol
. 2005; 97: 310–317.
15. Goncalves V. Long-term quality of life
in gynecological cancer survivors. Curr Opin Obstet Gynecol
. 2010; 22: 30–35.
16. Fitch M, Gray RE, Franssen E. Perspectives on living with ovarian cancer: young women’s views. Can Oncol Nurs J
. 2000; 10: 101–108.
17. Burns M, Costello J, Ryan-Woolley B, et al.. Assessing the impact of late treatment effects in cervical cancer: an exploratory study of women’s sexuality. Eur J Cancer Care (Engl)
. 2007; 16: 364–372.
18. Levin AO, Carpenter KM, Fowler JM, et al.. Sexual morbidity associated with poorer psychological adjustment among gynecological cancer survivors. Int J Gynecol Cancer
. 2010; 20: 461–470.
19. Gotay CC, Farley JH, Kawamoto CT, et al.. Adaptation and quality of life
among long-term cervical cancer survivors in the military health care system. Mil Med
. 2008; 173: 1035–1041.
20. Axelsen SM, Bek KM, Petersen LK. Urodynamic and ultrasound characteristics of incontinence after radical hysterectomy. Neurourol Urodyn
. 2007; 26: 794–799.
21. Boscaglia N, Clarke DM, Jobling TW, et al.. The contribution of spirituality and spiritual coping to anxiety and depression in women with a recent diagnosis of gynecological cancer. Int J Gynecol Cancer
. 2005; 15: 755–761.
22. Zenger M, Glaesmer H, Hockel M, et al.. Pessimism predicts anxiety, depression and quality of life
in female cancer patients. Jpn J Clin Oncol
. 2011; 41: 87–94.
23. Goncalves V, Jayson G, Tarrier N. A longitudinal investigation of psychological disorders in patients prior and subsequent to a diagnosis of ovarian cancer. J Clin Psychol Med Settings
. 2010; 17: 167–173.
24. Cavanagh S, Millar A, McLafferty E. The recognition and use of patient expertise on a unit for older people. Nurs Older People
. 2007; 19: 31–36; quiz 37.
25. Hammer K, Mogensen O, Hall EO. Hope as experienced in women newly diagnosed with gynaecological cancer. Eur J Oncol Nurs
. 2009; 13: 274–279.
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