Incontinence, physical activity, and pelvic floor muscle training in female pelvic cancer survivors after radiotherapy

Abstract: Background: Cancer treatment continues to improve, contributing to an ever-growing population of cancer survivors. Pelvic cancer survivors (PCS) constitute the second largest group of female cancer survivors after breast cancer. Many female PCS have been treated with radiotherapy as a part of their cancer treatment. Unfortunately, like all effective cancer treatments, pelvic radiotherapy is associated with a risk of subsequent, unwanted side effects. Some side effects remain or persist long after the end of treatment and some are even lifelong. A common and burdensome side effect after pelvic radiotherapy is urinary and/or fecal incontinence. Incontinence is known to negatively affect quality of life (QoL) and physical activity levels. Physical activity contributes to several positive health effects. In cancer survivors, it may reduce the risk of recurrence and even the mortality risk. Cancer survivors in general, and female PCS in particular, tend to be less physically active after cancer treatment than before treatment. When suffering from urinary and even fecal incontinence, pelvic floor muscle training (PFMT) is recommended as a first-line treatment for the general population. In addition to decreased incontinence levels, PFMT may contribute to increased physical activity and better QoL. However, little attention is given to PFMT as a potential treatment for incontinence in the Swedish national care program for pelvic cancer rehabilitation. Furthermore, there is as yet no evidence that PFMT is as effective in female PCS as in female non-cancer survivors. The effectiveness of PFMT cannot be taken for granted because female PCS survivors often have treatmentinduced damage to structures in the pelvic floor that might affect its applicability. However, the problem of incontinence among female PCS remains, along with the fact that they tend to be less physically active than other cancer survivors. Indeed, this is an important research area and a necessary problem for health-care providers to resolve, not least for physiotherapists.Aim: The overall aim of this thesis is to improve the understanding of female PCS’ experiences of incontinence in relation to physical activity, QoL, and rehabilitative efforts, including PFMT. This includes gaining increased knowledge about the relation between incontinence and physical activity in the form of exercise and QoL, and whether PCS experience that physiotherapy contributes in a valuable way to reducing their incontinence. This could enable the development of meaningful physiotherapeutic interventions, that PCS can and are willing to engage in, to achieve a potential reduction in incontinence, as well as increased QoL and activity levels.Methods: The thesis includes four different studies, using three different methods, all conducted with female PCS. Studies I (n=13) and IV (n=11) are qualitative individual interview studies, using semi-structured interview guides. Study II is a cohort-based cross-sectional observational study (n=578) and Study III is a prospective cohort-based observational study (n=260).Results: Female PCS reported an absence of information regarding incontinence as a potential side effect of radiotherapy treatment. They experienced that incontinence prevented them from being as physically active as before treatment, and that incontinence of urine and feces impaired several aspects of QoL, including sexual health. They lacked potential rehabilitative options beyond conventional pelvic cancer rehabilitation. After practicing PFMT for three months, they found it a valuable rehabilitative measure for incontinence. They also experienced the physiotherapeutic support and guidance as valuable in teaching them how to contract the pelvic floor muscles correctly and providing individual guidance regarding dose, frequency, and progression of the training. In Study II, 67% of female PCS exercised at least once a week, while 33% exercised less than once a week. Women who reported leakage of large or all volume of feces (multivariable analysis) were statistically significantly more likely to exercise less than once a week. A similar co-variation was seen among women who reported leakage of moderate to large volumes of urine (univariate analysis). This, however, was not statistically significant in a multivariable analysis. When exercising on a weekly basis, they reported less frequently depressed mood and better QoL, compared to those who exercised less than once a week. Three months after an individually designed intervention program, in line with the conventional pelvic cancer rehabilitation offered within Swedish healthcare today, female PCS reported statistically significantly lower levels of urinary and fecal incontinence. However, no statistically significant changes in frequency of exercise were seen.Conclusion: Incontinence was a barrier to physical activity and exercise, and it reduced QoL and impaired sexual health in female PCS. When experiencing incontinence, and in particular fecal incontinence, female PCS were less likely to exercise on a weekly basis. Female PCS who exercise at least once a week experienced better QoL and less frequently depressed mood than PCS who were not exercising every week. Female PCS did not exercise more often after conventional pelvic cancer rehabilitation, not even after incontinence levels were reduced. Female PCS had a positive attitude towards PFMT. After at least three months’ experience of practicing PFMT, they found it a valuable rehabilitative effort for incontinence. They also found physiotherapeutic support and guidance to be of great importance. Female PCS expressed a need for better information routines regarding side effects, such as incontinence, after cancer treatment. They also expressed a need for better information routines, including accessibility of additional rehabilitative efforts, beyond the conventional pelvic cancer rehabilitation offered today, when suffering from incontinence of urine and/or feces.