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  • 1.
    Alevronta, Eleftheria
    et al.
    Göteborgs universitet.
    Skokic, Viktor
    Göteborgs universitet.
    Dunberger, Gail
    Ersta Sköndal Bräcke högskola, Institutionen för vårdvetenskap.
    Bull, Cecilia
    Göteborgs universitet.
    Bergmark, Karin
    Göteborgs universitet.
    Jörnsten, Rebecka
    Chalmers tekniska högskola.
    Steineck, Gunnar
    Göteborgs universitet; Karolinska institutet.
    Dose-response relationships of intestinal organs and excessive mucus discharge after gynaecological radiotherapy.2021Ingår i: PLOS ONE, E-ISSN 1932-6203, Vol. 16, nr 4, artikel-id e0250004Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    BACKGROUND: The study aims to determine possible dose-volume response relationships between the rectum, sigmoid colon and small intestine and the 'excessive mucus discharge' syndrome after pelvic radiotherapy for gynaecological cancer.

    METHODS AND MATERIALS: From a larger cohort, 98 gynaecological cancer survivors were included in this study. These survivors, who were followed for 2 to 14 years, received external beam radiation therapy but not brachytherapy and not did not have stoma. Thirteen of the 98 developed excessive mucus discharge syndrome. Three self-assessed symptoms were weighted together to produce a score interpreted as 'excessive mucus discharge' syndrome based on the factor loadings from factor analysis. The dose-volume histograms (DVHs) for rectum, sigmoid colon, small intestine for each survivor were exported from the treatment planning systems. The dose-volume response relationships for excessive mucus discharge and each organ at risk were estimated by fitting the data to the Probit, RS, LKB and gEUD models.

    RESULTS: The small intestine was found to have steep dose-response curves, having estimated dose-response parameters: γ50: 1.28, 1.23, 1.32, D50: 61.6, 63.1, 60.2 for Probit, RS and LKB respectively. The sigmoid colon (AUC: 0.68) and the small intestine (AUC: 0.65) had the highest AUC values. For the small intestine, the DVHs for survivors with and without excessive mucus discharge were well separated for low to intermediate doses; this was not true for the sigmoid colon. Based on all results, we interpret the results for the small intestine to reflect a relevant link.

    CONCLUSION: An association was found between the mean dose to the small intestine and the occurrence of 'excessive mucus discharge'. When trying to reduce and even eliminate the incidence of 'excessive mucus discharge', it would be useful and important to separately delineate the small intestine and implement the dose-response estimations reported in the study.

  • 2.
    Alevronta, Eleftheria
    et al.
    Göteborgs universitet.
    Skokic, Viktor
    Göteborgs universitet.
    Wilderäng, Ulrica
    Göteborgs universitet.
    Dunberger, Gail
    Ersta Sköndal Bräcke högskola, Institutionen för vårdvetenskap.
    Sjöberg, Fei
    Göteborgs universitet.
    Bull, Cecilia
    Göteborgs universitet.
    Bergmark, Karin
    Göteborgs universitet.
    Jörnsten, Rebecka
    Karolinska institutet.
    Steineck, Gunnar
    Göteborgs universitet; Chalmers tekniska högskola.
    Dose-response relationships of the sigmoid for urgency syndrome after gynecological radiotherapy.2018Ingår i: Acta Oncologica, ISSN 0284-186X, E-ISSN 1651-226X, Vol. 57, nr 10, s. 1352-1358Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    PURPOSE: To find out what organs and doses are most relevant for 'radiation-induced urgency syndrome' in order to derive the corresponding dose-response relationships as an aid for avoiding the syndrome in the future.

    MATERIAL AND METHODS: From a larger group of gynecological cancer survivors followed-up 2-14 years, we identified 98 whom had undergone external beam radiation therapy but not brachytherapy and not having a stoma. Of those survivors, 24 developed urgency syndrome. Based on the loading factor from a factor analysis, and symptom frequency, 15 symptoms were weighted together to a score interpreted as the intensity of radiation-induced urgency symptom. On reactivated dose plans, we contoured the small intestine, sigmoid colon and the rectum (separate from the anal-sphincter region) and we exported the dose-volume histograms for each survivor. Dose-response relationships from respective risk organ and urgency syndrome were estimated by fitting the data to the Probit, RS, LKB and gEUD models.

    RESULTS: The rectum and sigmoid colon have steep dose-response relationships for urgency syndrome for Probit, RS and LKB. The dose-response parameters for the rectum were D50: 51.3, 51.4, and 51.3 Gy, γ50 = 1.19 for all models, s was 7.0e-09 for RS and n was 9.9 × 107 for LKB. For Sigmoid colon, D50 were 51.6, 51.6, and 51.5 Gy, γ50 were 1.20, 1.25, and 1.27, s was 2.8 for RS and n was 0.079 for LKB.

    CONCLUSIONS: Primarily the dose to sigmoid colon as well as the rectum is related to urgency syndrome among gynecological cancer survivors. Separate delineation of the rectum and sigmoid colon in order to incorporate the dose-response results may aid in reduction of the incidence of the urgency syndrome.

  • 3.
    Dunberger, Gail
    et al.
    Ersta Sköndal högskola, Institutionen för vårdvetenskap.
    Hellbom, Maria
    Skånes universitetssjukvård, Lund.
    Bergmark, Karin
    Sahlgrenska universitetssjukhuset, Göteborg.
    Ahlberg, Karin
    Göteborgs universitet.
    Tidig och individualiserad cancerrehabilitering viktig2015Ingår i: Läkartidningen, ISSN 0023-7205, E-ISSN 1652-7518, Vol. 112Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Survivors of gynecological cancer experience physical, psychological and existential consequences. Late gastrointestinal and urinary bladder symptoms, sexual dysfunction, including underlying physical and relational aspects, as well as lymphedema and fatigue, are common complaints. This may lead to reduced quality of life and social functioning and cancer rehabilitation is needed. Cancer rehabilitation, focusing on the individual cancer survivor and her specific needs, starting at diagnosis and continuing throughout cancer treatment and at follow-ups, is necessary.

  • 4.
    Dunberger, Gail
    et al.
    Karolinska institutet.
    Thulin, Helena
    Karolinska institutet.
    Waldenström, Ann-Charlotte
    Göteborgs universitet.
    Lind, Helena
    Karolinska institutet.
    Henningsohn, Lars
    Karolinska institutet.
    Åvall-Lundqvist, Elisabeth
    Karolinska institutet.
    Steineck, Gunnar
    Karolinska institutet, Göteborgs universitet.
    Kreicbergs, Ulrika
    Karolinska institutet, Sophiahemmet.
    Cancer survivors' perception of participation in a long-term follow-up study.2013Ingår i: Journal of Medical Ethics, ISSN 0306-6800, E-ISSN 1473-4257, Vol. 39, nr 1, s. 41-45Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Every year medical researchers make contact with a large number of cancer survivors with the aim of evaluating cancer treatment. For this reason we decided to investigate how Swedish cancer survivors perceived their participation in research studies focusing on the long-term consequences of being a survivor of gynaecological or urinary bladder cancer. Data were collected by means of two study-specific postal questionnaires, both consisting of questions covering physical symptoms, well-being and the experience of being a cancer survivor. Both questionnaires also included questions evaluating the participants' experience of being research subjects. The questionnaires were developed in close co-operation with cancer survivors. The study population consisted of 1068 cancer survivors. Of these, 95% (n=1003) reported that they thought the study was valuable and 54% (n=559) that they had been positively affected by participating. Four per cent (n=39) expressed that they had been negatively affected by their participation in the study. The vast majority of the cancer survivors thought that participating in their particular study was valuable.

  • 5.
    Hedelin, Maria
    et al.
    Göteborgs universitet.
    Skokic, Viktor
    Göteborgs universitet.
    Wilderäng, Ulrica
    Göteborgs universitet.
    Ahlin, Rebecca
    Göteborgs universitet.
    Bull, Cecilia
    Göteborgs universitet.
    Sjöberg, Fei
    Göteborgs universitet.
    Dunberger, Gail
    Ersta Sköndal Bräcke högskola, Institutionen för vårdvetenskap.
    Bergmark, Karin
    Göteborgs universitet.
    Stringer, Andrea
    Australia.
    Steineck, Gunnar
    Göteborgs universitet; Karolinska institutet.
    Intake of citrus fruits and vegetables and the intensity of defecation urgency syndrome among gynecological cancer survivors.2019Ingår i: PLOS ONE, E-ISSN 1932-6203, Vol. 14, nr 1, artikel-id e0208115Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    BACKGROUND: Despite the experimental evidence that certain dietary compounds lower the risk of radiation-induced damage to the intestine, clinical data are missing and dietary advice to irradiated patients is not evidence-based.

    MATERIALS AND METHODS: We have previously identified 28 intestinal health-related symptoms among 623 gynaecological-cancer survivors (three to fifteen years after radiotherapy) and 344 matched population-based controls. The 28 symptoms were grouped into five radiation-induced survivorship syndromes: defecation-urgency syndrome, fecal-leakage syndrome, excessive mucus discharge, excessive gas discharge and blood discharge. The grouping was based on factor scores produced by Exploratory Factor Analysis in combination with the Variable Cutoff Method. Frequency of food intake was measured by a questionnaire. We evaluated the relationship between dietary intake and the intensity of the five syndromes.

    RESULTS: With the exception of excessive mucus discharge, the intensity of all syndromes declined with increasing intake of citrus fruits. The intensity of defecation-urgency and fecal-leakage syndrome declined with combined intake of vegetables and citrus fruits. The intensity of excessive mucus discharge was increased with increasing intake of gluten.

    CONCLUSION: In this observational study, we found an association between a high intake of citrus fruits and vegetables and a lower intensity of the studied radiation-induced cancer survivorship syndromes. Our data suggest it may be worthwhile to continue to search for a role of the diet before, during and after radiotherapy to help the cancer survivor restore her or his intestinal health after irradiation.

  • 6.
    Krook, Caroline
    et al.
    Ersta Sköndal Bräcke högskola, Institutionen för vårdvetenskap.
    Lundh Hagelin, Carina
    Ersta Sköndal Bräcke högskola, Institutionen för vårdvetenskap. Karolinska institutet.
    Dunberger, Gail
    Ersta Sköndal Bräcke högskola, Institutionen för vårdvetenskap.
    Living in limbo: Meanings of living with fecal incontinence as narrated by women after treatment for pelvic cancer2021Ingår i: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 55, artikel-id 102044Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    PURPOSE: After pelvic radiotherapy, individuals suffer from loose stools and defecation urgency, often resulting in fecal incontinence (FI). Women who have been treated for pelvic cancer report FI as one of the most troubling symptoms, yet they avoid seeking healthcare due to shame and stigmatization. There is a lack of knowledge concerning women's lived experiences of FI in daily life after pelvic radiotherapy. The objective was to illuminate meanings of living with FI among women previously treated with radiotherapy for gynecological or rectal cancer.

    METHOD: Interviews were performed with ten women, treated with pelvic radiotherapy. Data were analyzed with phenomenological-hermeneutic method.

    RESULTS: Living with FI, was illuminated by one overarching main theme: Living in Limbo, consisting of two themes (including three sub-themes each): Living in uncertainty and Wanting to take part in life.

    CONCLUSION: Living with FI means that life is no longer the same as before the disease and treatment. The new life is lived in limbo, which means a daily struggle with insecurity because of the lack of control over one's body. It is also a struggle to take part in life, keep one's human dignity intact, experience meaning in life and can be and do what one wants.

  • 7.
    Lind, Helena
    et al.
    Karolinska institutet.
    Alevronta, Eleftheria
    Karolinska institutet; Göteborgs universitet.
    Steineck, Gunnar
    Karolinska institutet; Göteborgs universitet.
    Waldenström, Ann-Charlotte
    Göteborgs universitet.
    Nyberg, Tommy
    Karolinska institutet.
    Olsson, Caroline
    Göteborgs universitet.
    Wilderäng, Ulrica
    Göteborgs universitet.
    Dunberger, Gail
    Ersta Sköndal högskola, Institutionen för vårdvetenskap. Karolinska institutet.
    Al-Abany, Massoud
    Karolinska institutet.
    Åvall-Lundqvist, Elisabeth
    Karolinska institutet; Linköpings universitet.
    Defecation into clothing without forewarning and mean radiation dose to bowel and anal-sphincter among gynecological cancer survivors2016Ingår i: Acta Oncologica, ISSN 0284-186X, E-ISSN 1651-226X, Vol. 55, nr 11, s. 1285-1293Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    BACKGROUND: To analyze the relationship between mean radiation dose to the bowels and the anal-sphincter and occurrence of 'defecation into clothing without forewarning', a specific and serious fecal incontinence symptom after gynecological radiotherapy. Additional potential risk factors associated with the symptom are explored.

    MATERIAL AND METHODS: Data were collected for 519 eligible gynecological cancer survivors, treated with pelvic radiotherapy, with a median follow-up of 5.8 years, using a study-specific questionnaire and medical records. Correlations between defecation into clothing without forewarning and mean dose to organs at risk; the anal-sphincter region, the rectum, the sigmoid and the small intestines were investigated, also taking other risk factors into account.

    RESULTS: Twelve percent reported having had the symptom at least once in the preceding six months. Mean doses >50 Gy to the anal-sphincter region, the rectum, the sigmoid and the small intestines were related to the occurrence of the symptom. Significantly associated risk factors were deliveries with high birth weight, heart failure and lactose and/or gluten intolerance. After adjusting for these factors, mean doses >50 Gy to the anal-sphincter region, the sigmoid and the small intestines remained related to the occurrence of the symptom.

    CONCLUSION: Mean doses to the bowels and anal-sphincter region are related to the risk of defecation into clothing without forewarning in long-term gynecological cancer survivors treated with pelvic radiotherapy. Further radiobiological modeling may distinguish which organ(s) contribute most to development of the symptom.

  • 8.
    Lindgren, Anna
    et al.
    Region Östergötland; Linköpings universitet.
    Dunberger, Gail
    Ersta Sköndal Bräcke högskola, Institutionen för vårdvetenskap.
    Steineck, Gunnar
    Karolinska institutet; Göteborgs universitet.
    Bergmark, Karin
    Göteborgs universitet.
    Enblom, Anna
    Region Östergötland; Linköpings universitet.
    Identifying female pelvic cancer survivors with low levels of physical activity after radiotherapy: women with fecal and urinary leakage need additional support2020Ingår i: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 28, nr 6, s. 2669-2681Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    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.

  • 9.
    Sekse, Ragnhild Johanne Tveit
    et al.
    Haukeland universitetssjukehus, Bergen, Norway; Universitetet i Bergen, Norway.
    Dunberger, Gail
    Ersta Sköndal Bräcke högskola, Institutionen för vårdvetenskap.
    Olesen, Mette Linnet
    Rigshospitalet, København, Denmark.
    Østerbye, Maria
    Aarhus Universitet, Denmark.
    Seibaek, Lene
    Aarhus Universitet, Denmark.
    Lived experiences and quality of life after gynaecological cancer: An integrative review2019Ingår i: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 28, nr 9-10, s. 1393-1421Artikel, forskningsöversikt (Refereegranskat)
    Abstract [en]

    AIM AND OBJECTIVES: To review the literature on Nordic women's lived experiences and quality of life (QoL) after gynaecological cancer treatment.

    BACKGROUND: While incidence and survival are increasing in all groups of gynaecological cancers in the Nordic countries, inpatient hospitalisation has become shorter in relation to treatment. This has increased the need for follow-up and rehabilitation.

    DESIGN: Integrative literature review using the Equator PRISMA guidelines.

    METHODS: The review was selected, allowing inclusion of both experimental and nonexperimental research. The search included peer-reviewed articles published 1995-2017. To frame the search strategy, we applied the concept of rehabilitation, which holds a holistic perspective on health.

    RESULTS: Fifty-five articles were included and were contextualised within three themes. Physical well-being in a changed body encompasses bodily changes comprising menopausal symptoms, a changed sexual life, complications in bowels, urinary tract, lymphoedema and pain, bodily-based preparedness and fear of recurrence. Mental well-being as a woman deals with questioned womanliness, the experience of revitalised values in life, and challenges of how to come to terms with oneself after cancer treatment. Psychosocial well-being and interaction deals with the importance of having a partner or close person in the process of coming to terms with oneself after cancer. Furthermore, the women needed conversations with health professionals around the process of coping with changes and late effects, including intimate and sensitive issues.

    CONCLUSION: Years after gynaecological cancer, women have to deal with fundamental changes and challenges concerning their physical, mental and psychosocial well-being. Future research should focus on how follow-up programmes can be organised to target the multidimensional aspects of women's QoL. Research collaboration across Nordic countries on rehabilitation needs and intervention is timely and welcomed.

    RELEVANCE TO CLINICAL PRACTICE: To ensure that all aspects of cancer rehabilitation are being addressed, we suggest that the individual woman is offered an active role in her follow-up.

  • 10.
    Steineck, Gunnar
    et al.
    Göteborgs universitet; Karolinska institutet.
    Sjöberg, Fei
    Göteborgs universitet.
    Skokic, Viktor
    Göteborgs universitet.
    Bull, Cecilia
    Göteborgs universitet.
    Wilderäng, Ulrica
    Göteborgs universitet.
    Alevronta, Eleftheria
    Göteborgs universitet.
    Dunberger, Gail
    Ersta Sköndal Bräcke högskola, Institutionen för vårdvetenskap.
    Bergmark, Karin
    Göteborgs universitet.
    Jörnsten, Rebecka
    Göteborgs universitet.
    Late radiation-induced bowel syndromes, tobacco smoking, age at treatment and time since treatment - gynecological cancer survivors.2017Ingår i: Acta Oncologica, ISSN 0284-186X, E-ISSN 1651-226X, Vol. 56, nr 5, s. 682-691Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    BACKGROUND: It is unknown whether smoking; age at time of radiotherapy or time since radiotherapy influence the intensity of late radiation-induced bowel syndromes.

    MATERIAL AND METHODS: We have previously identified 28 symptoms decreasing bowel health among 623 gynecological-cancer survivors (three to twelve years after radiotherapy) and 344 matched population-based controls. The 28 symptoms were grouped into five separate late bowel syndromes through factor analysis. Here, we related possible predictors of bowel health to syndrome intensity, by combining factor analysis weights and symptom frequency on a person-incidence scale.

    RESULTS: A strong (p < .001) association between smoking and radiation-induced urgency syndrome was found with a syndrome intensity (normalized factor score) of 0.4 (never smoker), 1.2 (former smoker) and 2.5 (current smoker). Excessive gas discharge was also related to smoking (p = .001). Younger age at treatment resulted in a higher intensity, except for the leakage syndrome. For the urgency syndrome, intensity decreased with time since treatment.

    CONCLUSIONS: Smoking aggravates the radiation-induced urgency syndrome and excessive gas discharge syndrome. Smoking cessation may promote bowel health among gynecological-cancer survivors. Furthermore, by understanding the mechanism for the decline in urgency-syndrome intensity over time, we may identify new strategies for prevention and alleviation.

  • 11.
    Steineck, Gunnar
    et al.
    Göteborgs universitet; Karolinska institutet.
    Skokic, Viktor
    Göteborgs universitet.
    Sjöberg, Fei
    Göteborgs universitet.
    Bull, Cecilia
    Göteborgs universitet.
    Alevronta, Eleftheria
    Göteborgs universitet.
    Dunberger, Gail
    Ersta Sköndal Bräcke högskola, Institutionen för vårdvetenskap.
    Bergmark, Karin
    Göteborgs universitet.
    Wilderäng, Ulrica
    Göteborgs universitet.
    Oh, Jung Hun
    USA.
    Deasy, Joseph O
    USA.
    Jörnsten, Rebecka
    Chalmers tekniska högskola .
    Identifying radiation-induced survivorship syndromes affecting bowel health in a cohort of gynecological cancer survivors.2017Ingår i: PLOS ONE, E-ISSN 1932-6203, Vol. 12, nr 2, artikel-id e0171461Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    BACKGROUND: During radiotherapy unwanted radiation to normal tissue surrounding the tumor triggers survivorship diseases; we lack a nosology for radiation-induced survivorship diseases that decrease bowel health and we do not know which symptoms are related to which diseases.

    METHODS: Gynecological-cancer survivors were followed-up two to 15 years after having undergone radiotherapy; they reported in a postal questionnaire the frequency of 28 different symptoms related to bowel health. Population-based controls gave the same information. With a modified factor analysis, we determined the optimal number of factors, factor loadings for each symptom, factor-specific factor-loading cutoffs and factor scores.

    RESULTS: Altogether data from 623 survivors and 344 population-based controls were analyzed. Six factors best explain the correlation structure of the symptoms; for five of these a statistically significant difference (P< 0.001, Mann-Whitney U test) was found between survivors and controls concerning factor score quantiles. Taken together these five factors explain 42 percent of the variance of the symptoms. We interpreted these five factors as radiation-induced syndromes that may reflect distinct survivorship diseases. We obtained the following frequencies, defined as survivors having a factor loading above the 95 percent percentile of the controls, urgency syndrome (190 of 623, 30 percent), leakage syndrome (164 of 623, 26 percent), excessive gas discharge (93 of 623, 15 percent), excessive mucus discharge (102 of 623, 16 percent) and blood discharge (63 of 623, 10 percent).

    CONCLUSION: Late effects of radiotherapy include five syndromes affecting bowel health; studying them and identifying the underlying survivorship diseases, instead of the approximately 30 long-term symptoms they produce, will simplify the search for prevention, alleviation and elimination.

  • 12.
    Åkeflo, Linda
    et al.
    Göteborgs universitet.
    Dunberger, Gail
    Ersta Sköndal Bräcke högskola, Institutionen för vårdvetenskap.
    Elmerstig, Eva
    Malmö universitet.
    Skokic, Viktor
    Göteborgs universitet.
    Steineck, Gunnar
    Göteborgs universitet.
    Bergmark, Karin
    Göteborgs universitet.
    Cohort profile: an observational longitudinal data collection of health aspects in a cohort of female cancer survivors with a history of pelvic radiotherapy : a population-based cohort in the western region of Sweden2021Ingår i: BMJ Open, E-ISSN 2044-6055, Vol. 11, nr 7, artikel-id e049479Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    PURPOSE: The study 'Health among women after pelvic radiotherapy' was conducted in response to the need for more advanced and longitudinal data concerning long-term radiotherapy-induced late effects and chronic states among female cancer survivors. The objective of this paper is to detail the cohort profile and the study procedure in order to provide a sound basis for future analyses of the study cohort.

    PARTICIPANTS: Since 2011, and still currently ongoing, participants have been recruited from a population-based study cohort including all female patients with cancer, over 18 years of age, treated with pelvic radiotherapy with curative intent at Sahlgrenska University Hospital in Gothenburg, in the western region of Sweden, which covers 1.7 million of the Swedish population. The dataset presented here consists of baseline data provided by 605 female cancer survivors and 3-month follow-up data from 260 individuals with gynaecological, rectal or anal cancer, collected over a 6-year period.

    FINDINGS TO DATE: Data have been collected from 2011 onwards. To date, three studies have been published using the dataset reporting long-term radiation-induced intestinal syndromes and late adverse effects affecting sexuality, the urinary tract, the lymphatic system and physical activity. These projects include the evaluation of interventions developed by and provided in a nurse-led clinic.

    FUTURE PLANS: This large prospective cohort offers the possibility to study health outcomes in female pelvic cancer survivors undergoing a rehabilitation intervention in a nurse-led clinic, and to study associations between demographics, clinical aspects and long-term late effects. Analysis focusing on the effect of the interventions on sexual health aspects, preinterventions and postinterventions, is currently ongoing. The cohort will be expanded to comprise the entire data collection from 2011 to 2020, including baseline data and data from 3-month and 1-year follow-ups after interventions. The data will be used to study conditions and treatment-induced late effects preintervention and postintervention.

  • 13.
    Åkeflo, Linda
    et al.
    Sahlgrenska akademin.
    Elmerstig, Eva
    Malmö universitet.
    Bergmark, Karin
    Sahlgrenska akademin.
    Dunberger, Gail
    Marie Cederschiöld högskola, Institutionen för vårdvetenskap.
    Barriers to and strategies for dealing with vaginal dilator therapy - Female pelvic cancer survivors' experiences: A qualitative study2023Ingår i: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 62, artikel-id 102252Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    PURPOSE: Vaginal changes, a frequently reported late effect among women treated with pelvic radiotherapy, can result in sexual dysfunction and distress. Women are recommended vaginal dilator therapy after completed radiotherapy; however, low adoption has been recognized. This study aims to provide insight into women's difficulties with carrying out vaginal dilator therapy and their experiences of information.

    METHODS: Face-to-face, semi-structured interviews were undertaken with 12 pelvic cancer survivors in a selected sample of women with difficulties adopting the therapy. Interviews were audio-recorded, transcribed and analyzed using qualitative content analysis.

    RESULTS: One overarching theme, Being unprepared, emerged from three identified categories relating to Experience of received information, Experience of performing the therapy, and Motivation to perform the therapy. The women experienced the information as unrealistic and insufficient, and requested clearer and earlier information. Bleeding, pain, fear of cancer recurrence, and recalling memories from treatments were experienced. Women described intestinal symptoms, fatigue, and feeling that the therapy was self-harm as barriers to performing the therapy. They described creating routines, breathing exercises, relaxation, pre-warming the dilator and performing therapy together with their partner as helpful strategies.

    CONCLUSIONS: Careful discussion, early and clear communication, psychoeducation and supportive follow-up of vaginal changes should be integrated into cancer treatment and follow up. Healthcare professionals should be aware of potential difficulties with vaginal dilator therapy and identify women in need of extended support. Research is required to investigate interventions that suit the needs of female pelvic cancer survivors.

  • 14.
    Åkeflo, Linda
    et al.
    Göteborgs universitet.
    Elmerstig, Eva
    Malmö universitet.
    Dunberger, Gail
    Ersta Sköndal Bräcke högskola, Institutionen för vårdvetenskap.
    Skokic, Viktor
    Göteborgs universitet.
    Arnell, Amanda
    Göteborgs universitet.
    Bergmark, Karin
    Göteborgs universitet.
    Sexual health and wellbeing after pelvic radiotherapy among women with and without a reported history of sexual abuse: important issues in cancer survivorship care2021Ingår i: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 29, nr 11, s. 6851-6861Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    AIMS: Sexual abuse is a women's health concern globally. Although experience of sexual abuse and cancer may constitute risk factors for sexual dysfunction and low wellbeing, the effects of sexual abuse have received little attention in oncology care. This study aims to explore sexual health and wellbeing in women after pelvic radiotherapy and to determine the relationship between sexual abuse and sexual dysfunction, and decreased wellbeing.

    METHODS: Using a study-specific questionnaire, data were collected during 2011-2017 from women with gynaecological, anal, or rectal cancer treated with curative pelvic radiotherapy in a population-based cohort and a referred patient group. Subgroup analyses of data from women with a reported history of sexual abuse were conducted, comparing socio-demographics, diagnosis, aspects of sexual health and wellbeing.

    RESULTS: In the total sample of 570 women, 11% reported a history of sexual abuse and among these women the most common diagnosis was cervical cancer. More women with than without a history of sexual abuse reported feeling depressed (19.4% vs. 9%, p = 0.007) or anxious (22.6% vs. 11.8%, p = 0.007) and suffering genital pain during sexual activity (52% vs. 25.1%, p = 0.011, RR 2.07, CI 1.24-3.16). In the total study cohort, genital pain during sexual activity was associated with vaginal shortness (68.5% vs. 31.4% p ≤ 0.001) and inelasticity (66.6% vs. 33.3%, p ≤ 0.001).

    CONCLUSIONS: Our findings suggest that a history of both sexual abuse and pelvic radiotherapy in women are associated with increased psychological distress and sexual impairment, challenging healthcare professionals to take action to prevent retraumatisation and provide appropriate interventions and support.

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