A Preliminary Phenomenological Exploration of Experiences of the Empty Pelvis Syndrome Derived From a Modified-Delphi: The Price of Survival Following Pelvic Exenteration for Advanced Pelvic Cancer.

OBJECTIVE: The empty pelvis syndrome (EPS) is common after pelvic exenteration (PE), causing fluid collections, bowel obstruction, perineal sinuses, and fistulas. The best approach to fill the pelvis to mitigate this remains controversial, and the impact of EPS on health-related quality of life (HrQoL) is unknown. This study is the first to begin to explore lived-experiences of EPS complications. METHODS: Unstructured EPS virtual focus group meetings were conducted with a convenience sample of patients who underwent PE, as an extension of a modified-Delphi study. Interpretative phenomenological analysis was conducted on verbatim transcripts to generate group experiential themes. RESULTS: Twelve patients (eight UK, one Dutch, and three Belgian) participated in four focus groups. Eight EPS complications were reported, (two pelvic collections, five chronic perineal sinuses, and one bowel obstruction). Group experiential themes were 'Out of Options', depicting patients forced to accept complications or limited survival; 'The New Normal', with EPS potentially delaying adaptation to post-PE HrQoL; 'Information Influencing Adaptation,' emphasising the significance of patients understanding EPS to cope with its effects; and 'Symptoms,' reporting manifestations of EPS, the resultant physical limitations, and an intangible feeling that patients lost part of themselves. CONCLUSIONS: EPS may influence patient decision-making, regret, adaptation, and information-seeking. It can cause a variety of unpleasant symptoms and physical limitations, which may include phantom phenomenon. This work supports ongoing purposeful HrQoL research to better define these themes.

The effect of psychosocial interventions for sexual health in patients with pelvic cancer: a systematic review and meta-analysis.

AIM: The aim of this systematic review and meta-analysis was to explore and evaluate the effect of psychosocial interventions in improving sexual health outcomes among post-treatment patients with pelvic cancer. METHODS: Inclusion and exclusion criteria were pelvic cancer survivors; psychosocial interventions; studies with a control group and measures of sexual health. Five databases were searched for literature along with an inspection of the included studies' reference lists to extend the search. Risk of bias was assessed with the RoB2 tool. Standardised mean difference (SMD) with a random effects model was used to determine the effect size of psychosocial interventions for sexual health in patients with pelvic cancers. RESULTS: Thirteen studies were included, with a total number of 1,541 participants. There was a large heterogeneity regarding the type of psychosocial intervention used with the source found in a leave one out analysis. Six studies showed statistically significant improvements in sexual health, while three showed positive but non-significant effects. The summary effect size estimate was small SMD = 0.24 (95% confidence interval [CI]: 0.05 to 0.42, p = 0.01). DISCUSSION: There is limited research on psychosocial interventions for sexual health in pelvic cancer patients. There are also limitations in the different pelvic cancer diagnoses examined. Commonly, the included articles examined physical function rather than the whole sexual health spectrum. The small effect sizes may in part be due to evaluation of psychosocial interventions by measuring physical dysfunction. Future research should broaden sexual health assessment tools and expand investigations to more cancer types.

An assessment of the use of patient reported outcome measurements (PROMs) in cancers of the pelvic abdominal cavity: identifying oncologic benefit and an evidence-practice gap in routine clinical practice.

BACKGROUND: Patient reported outcome measurements (PROMs) are emerging as an important component of patient management in the cancer setting, providing broad perspectives on patients' quality of life and experience. The use of PROMs is, however, generally limited to the context of randomised control trials, as healthcare services are challenged to sustain high quality of care whilst facing increasing demand and financial shortfalls. We performed a systematic review of the literature to identify any oncological benefit of using PROMs and investigate the wider impact on patient experience, in cancers of the pelvic abdominal cavity specifically. METHODS: A systematic review of the literature was conducted using MEDLINE (Pubmed) and Ovid Gateway (Embase and Ovid) until April 2020. Studies investigating the oncological outcomes of PROMs were deemed suitable for inclusion. RESULTS: A total of 21 studies were included from 2167 screened articles. Various domains of quality of life (QoL) were identified as potential prognosticators for oncologic outcomes in cancers of the pelvic abdominal cavity, independent of other clinicopathological features of disease: 3 studies identified global QoL as a prognostic factor, 6 studies identified physical and role functioning, and 2 studies highlighted fatigue. In addition to improved outcomes, a number of included studies also reported that the use of PROMs enhanced both patient-clinician communication and patient satisfaction with care in the clinical setting. CONCLUSIONS: This review highlights the necessity of routine collection of PROMs within the pelvic abdominal cancer setting to improve patient quality of life and outcomes.

Identifying female pelvic cancer survivors with low levels of physical activity after radiotherapy: women with fecal and urinary leakage need additional support.

OBJECTIVE: To investigate the frequency of physical activity among female pelvic cancer survivors (i.e., gynecological, rectal, and anal cancer survivors) and to investigate if survivors who practiced physical activity less than once a week differed from survivors practicing physical activity at least once a week with respect to urinary and fecal leakage, clinical and sociodemographic characteristics, quality of life (QoL), and depressed and anxious mood. METHODS: Female pelvic cancer survivors (n = 578, mean age 64 years) answered a questionnaire 6-48 months after radiotherapy. A multivariable regression model analyzed factors covarying with frequency of physical activity. We compared QoL and depressed and anxious mood between women practicing physical activity at least or less than once a week. RESULTS: Of 568 women delivering data, 186 (33%) practiced physical activity less than once a week while 382 (67%) practiced physical activity at least weekly. Women who leaked a large or all volume of stools (p = 0.01), had just elementary school level of education (p < 0.001), smokers (p = 0.049), or had lymphedema without receiving lymphedema treatment (p = 0.030) were more likely to practice physical activity less than weekly (50%, 45%, 45%, and 37%, respectively) compared with other women. Women practicing physical activity at least weekly reported better QoL (p < 0.001) and lower frequency of depressed mood (p = 0.044) compared with the others. CONCLUSIONS: Female cancer survivors experiencing fecal leakage were less likely to practice weekly physical activity than survivors without leakage. The survivors practicing weekly physical activity experienced better QoL and experienced depressed mood less frequently than the others.

How Can We Effectively Address the Medical and Psychological Concerns of Survivors of Pelvic Malignancies?

Sexual and urinary morbidities resulting from treatment of pelvic malignancies are common. These treatment sequelae are significantly bothersome to patients and challenging to address. Awareness of these complications is critical in order to properly counsel patients regarding potential side effects and to facilitate prompt diagnosis and management. Addressing these issues often necessitates a coordinated multidisciplinary approach; however, the effort required often translates into improvement in patient quality of life. Herein we review the sexual and urinary side effects that may arise during or after treatment of pelvic malignancies.

[Quality of life after extensive pelvic surgery]. / Kvalita zivota po extenzivních pánevních operacích.

INTRODUCTION: Multiorgan resections in the small pelvis are standard procedures in oncosurgery and some indications have no alternative. In advanced pelvic cancer, pelvic exenteration with en bloc resection of the involved organs and structures, including portions of the bony pelvis, is indicated. The 5-year survival rate is fairly good, around 50%, but little is known about the long-term quality of life. The aim was to describe the quality of life of long-term total pelvic exenteration survivors. METHOD: In total, 63 pelvic exenterations were performed between 2000 to 2015 at the Department of Surgery, Thomayer Hospital, First Faculty of Medicine, Charles University in Prague, mostly for primary or relapsed rectal cancer. In this retrospective cohort study, the quality of life was assessed using the EORTC QLQ-C30 (version 3.0) and the EORTC QLQ-CR29 questionnaires. The completed questionnaires were scored according to EORTC instructions. RESULTS: At the time of this survey, 24 patients after TPE were surviving longer than one year after the surgery. The five-year survival of all patients was 49%, median survival 4.6 years, and median follow-up 15 months. Most of our patients reported a good level of their physical, emotional, cognitive and social functions. Some patients reported a worse body image, and of course a worsening in their sexual life. Regarding symptom-oriented questions, some patients evaluated the necessity of more frequent care of the stomia as slightly problematic; most patients reported impotence (men) or painful sexual intercourse (women). CONCLUSION: Long-term quality of life in survivors of pelvic exenteration for rectal cancer is comparable with reported results following primary rectal cancer resection with the exception of the sexual function. The quality of life gradually improves in the course of weeks to months from the surgery. KEY WORDS: pelvic exenteration quality of life.

Assessing the Quality of Life in Patients With Endometrial Cancer Treated With Adjuvant Radiotherapy.

OBJECTIVE: The current study evaluates long-term quality of life (QOL) and sexual function of patients with endometrial cancer who received adjuvant pelvic external beam radiotherapy (EBRT) and/or vaginal brachytherapy (BRT). MATERIALS AND METHODS: One hundred forty-four endometrial cancer survivors who were treated between January 2000 and December 2009 in our department were included in this study. Median follow-up was 79 months (range, 31-138 months). Fifty-two patients were treated with 45 to 50.4 Gy EBRT, 76 were with BRT, and 16 were with both EBRT and BRT. Brachytherapy was in the form of vaginal cuff BRT with 5 × 550 cGy high dose rate BRT, prescribed to the first 4 cm and whole wall thickness of vagina. Quality of life was assessed using the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core 30 and subscales from the supplemental 24-item Cervical Cancer Module. RESULTS: Vaginal BRT patients reported better physical functioning (P = 0.01), role functioning (P = 0.03), and sexual enjoyment (P = 0.01) compared to EBRT group. Symptom score (P = 0.01), lymphedema (P = 0.03), pain (P = 0.02), and diarrhea (P = 0.009) scores were also higher with EBRT. Vaginal BRT did not worsen symptom scores or sexual functions when added to EBRT. Obese patients experienced higher rates of lymphedema (P = 0.008). Cognitive and role functioning scores were significantly higher in patients with normal body mass index. CONCLUSIONS: External beam radiotherapy negatively affects long-term QOL and sexual functions in endometrial cancer survivors. Vaginal BRT provides higher QOL. Patients with body mass index within normal limits have improved QOL.

Assessment of patient-reported measures of bowel function before and after pelvic radiotherapy: an ancillary study of the North Central Cancer Treatment Group study N00CA.

PURPOSE: The Bowel Function Questionnaire (BFQ) has been used in clinical trials to assess symptoms during and after pelvic radiotherapy (RT). This study evaluated the importance of symptoms in the BFQ from a patient perspective. METHODS: Patients reported presence or absence of symptoms and rated importance of symptoms at baseline, 4 weeks after completion of pelvic RT, and 12 and 24 months after RT. The BFQ measured overall quality of life (QOL) and symptoms of nocturnal bowel movements, incontinence, clustering, need for protective clothing, inability to differentiate stool from gas, liquid bowel movements, urgency, cramping, and bleeding. Bowel movement frequency also was recorded. A content validity questionnaire (CVQ) was used to rate symptoms as "not very important," "moderately unimportant," "neutral," "moderately important," or "very important." RESULTS: Most of the 125 participating patients rated all symptoms as moderately or very important. Generally, patients gave similar ratings for symptom importance at all study points, and ratings were independent of whether the patient experienced the symptom. Measures of greatest importance (moderately or very important) at baseline were ability to control bowel movements (94 %), not having to wear protective clothing (90 %), and not having rectal bleeding (94 %). With the exception of need for protective clothing, the presence of a symptom at 4 weeks was associated with significantly worse QOL (P < .01 for all). CONCLUSIONS: The BFQ has excellent content validity. Patients rated most symptoms as moderately or very important, indicating the BFQ is an appropriate tool for symptom assessment during and after pelvic RT.

Lower limb lymphedema in gynecological cancer survivors--effect on daily life functioning.

PURPOSE: Lower limb lymphedema (LLL) is a common condition after pelvic cancer treatment but few studies have evaluated its effect on the quality of life and its consequences on daily life activities among gynecological cancer survivors. METHODS: We identified a cohort of 789 eligible women, treated with pelvic radiotherapy alone or as part of combined treatment of gynecological cancer, from 1991 to 2003 at two departments of gynecological oncology in Sweden. As a preparatory study, we conducted in-depth interviews with gynecological cancer survivors and constructed a study-specific questionnaire which we validated face-to-face. The questionnaire covered physical symptoms originating in the pelvis, demographic, psychological, and quality of life factors. In relation to the lymph system, 19 questions were asked. RESULTS: Six hundred sixteen (78 %) gynecological cancer survivors answered the questionnaire and participated in the study. Thirty-six percent (218/606) of the cancer survivors reported LLL. Overall quality of life was significantly lower among cancer survivors with LLL. They were also less satisfied with their sleep, more worried about recurrence of cancer, and more likely to interpret symptoms from the body as recurrence. Cancer survivors reported that LLL kept them from physical activity (45 %) and house work (29 %) and affected their ability to partake in social activities (27 %) or to meet friends (20 %). CONCLUSION: Lower limb lymphedema has a negative impact on quality of life among gynecological cancer survivors, affecting sleep and daily life activities, yet only a few seek professional help.

Fecal incontinence affecting quality of life and social functioning among long-term gynecological cancer survivors.

INTRODUCTION: Fecal incontinence is a symptom reported by cancer survivors after pelvic radiotherapy and is recognized to be one of the most troubling symptom-induced sources of distress to patients. OBJECTIVE: To investigate how fecal incontinence, patient-reported as emptying of all stools into clothing without forewarning, impact self-assessed quality of life from a social, psychological, sexual, and functional aspect among gynecological cancer survivors treated with pelvic radiotherapy. METHODS: We identified a cohort of 789 eligible women in the Stockholm and Gothenburg areas treated with pelvic radiotherapy alone or as combined treatment of gynecological cancer. From the Swedish Population Registry, we identified 478 control women. Data were collected using a study-specific, validated, postal questionnaire including questions covering symptoms from the pelvic region, demographics, social functioning, psychological, and quality-of-life issues. RESULTS: Participation was 78% for cancer survivors and 72% for control women. The fecal incontinence symptom emptying of all stools into clothing without forewarning was reported by 70 cancer survivors (12%), with lowered quality of life in 74% of the 70 cancer survivors. This symptom kept the survivors from going to parties (relative risk [RR], 11.8; 95% confidence interval [CI], 6.6-21.1), kept the survivors from traveling (RR, 9.3; 95% CI, 5.3-16.5), affected their work ability (RR, 7.9; 95% CI, 3.8-16.4), hindered their sexual life (RR, 9.2; 95% CI, 4.8-17.6), and changed them as persons (RR, 4.9; 95% CI, 2.9-8.1). The prevalence of the symptom emptying of all stools into clothing without forewarning among control women was 3 (1%) of 344. CONCLUSIONS: Among gynecological cancer survivors having undergone pelvic radiotherapy alone or as part of a combined treatment, fecal incontinence is associated with social, psychological, sexual, and functional consequences.