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Sara Badre-Esfahani,1,2 Mette Bach Larsen,1 Lene Seibæk,2 Lone Kjeld Petersen,3 Jan Blaakær,3 Henrik Støvring,4 Berit Andersen1 1Department of Clinical Medicine, Aarhus University, Aarhus C DK-8000, Denmark; 2Department of Gynaecology and Obstetrics, Aarhus University Hospital, Aarhus N DK-8200, Denmark; 3Department of Gynaecology and Obstetrics, Odense University Hospital, Odense C DK-5000, Denmark; 4Department of Public Health, Aarhus University, Aarhus C DK-8000, DenmarkCorrespondence: Sara Badre-EsfahaniDepartment of Public Health Programmes, Randers Regional Hospital, Skovlyvej 15, Randers DK-8930, DenmarkTel +45 8 78 42 01 72Fax +45 8 78 42 43 45Email sarbad@rm.dkBackground: The combination of organized cervical cancer screening and childhood HPV vaccination programs has the potential to eliminate cervical cancer in the future. However, only women participating in both programs gain the full protection, and combined non-attenders remain at high risk of developing cervical cancer. Our aim was to analyze the association between non-adherence to HPV vaccination and non-participation in cervical cancer screening for the total population and stratified by native background and parental education.Participants: Women born in 1993 eligible for both childhood HPV vaccination and first cervical cancer screening.Analysis: Logistic regression models were used to estimate the odds ratio (OR) of non-participation in cervical cancer screening with 95% confidence intervals (CI). Stratified and adjusted logistic regression models were used along with the Wald test in order to test for interaction.Results: 24,828 women were included in the study. Among vaccinated women, 61.4% participated in cervical cancer screening; only 39.0% of unvaccinated women participated in cervical cancer screening. Unvaccinated and unscreened women were often non-native and had the lowest socio-economic status, whereas vaccinated and screened women were often native and had the highest socio-economic status. The adjusted OR for non-participation in cervical cancer screening was 2.07 [95% CI: 1.88–2.28] for unvaccinated compared to vaccinated women. After stratifying by country of origin, unvaccinated natives had the highest adjusted OR of not participating in cervical cancer screening compared to non-native women from both western and non-western countries (adjusted ORs of 2.2 [95% CI: 2.0–2.4], 1.3 [95% CI: 0.6–2.8], and 1.5 [95% CI: 1.1–2.0], respectively) (Wald test p=0.019).Conclusion: Among natives, non-adherence to HPV vaccination and non-participation in screening seem to be signs of generally poor health-preventive behavior, whereas among non-natives from non-western countries, non-attendance in HPV vaccination and cervical cancer screening seem to be influenced by unrelated factors. Therefore, a differentiated and culturally sensitive approach is needed to enhance overall cervical cancer preventive behavior across different nativities.Keywords: human papilloma virus, vaccination, screening, non-participation, socio-economic status, nationality

Sarah Mejer Sørensen,1 Signe Frahm Bjørn,1 Kirsten Marie Jochumsen,2 Pernille Tine Jensen,2 Ingrid Regitze Thranov,1 Helle Hare-Bruun,3 Lene Seibæk,4 Claus Høgdall1 1Department of Gynecology, Rigshospitalet, University of Copenhagen, Copenhagen, Denmark; 2Department of Obstetrics and Gynecology, Odense University Hospital, Odense, Denmark; 3Research Centre for Prevention and Health, The Capital Region of Denmark, Glostrup, Denmark; 4Department of Gynecology and Obstetrics, Aarhus University Hospital, Aarhus, Denmark Aim of database: The Danish Gynecological Cancer Database (DGCD) is a nationwide clinical cancer database and its aim is to monitor the treatment quality of Danish gynecological cancer patients, and to generate data for scientific purposes. DGCD also records detailed data on the diagnostic measures for gynecological cancer. Study population: DGCD was initiated January 1, 2005, and includes all patients treated at Danish hospitals for cancer of the ovaries, peritoneum, fallopian tubes, cervix, vulva, vagina, and uterus, including rare histological types. Main variables: DGCD data are organized within separate data forms as follows: clinical data, surgery, pathology, pre- and postoperative care, complications, follow-up visits, and final quality check. DGCD is linked with additional data from the Danish "Pathology Registry", the "National Patient Registry", and the "Cause of Death Registry" using the unique Danish personal identification number (CPR number). Descriptive data: Data from DGCD and registers are available online in the Statistical Analysis Software portal. The DGCD forms cover almost all possible clinical variables used to describe gynecological cancer courses. The only limitation is the registration of oncological treatment data, which is incomplete for a large number of patients. Conclusion: The very complete collection of available data from more registries form one of the unique strengths of DGCD compared to many other clinical databases, and provides unique possibilities for validation and completeness of data. The success of the DGCD is illustrated through annual reports, high coverage, and several peer-reviewed DGCD-based publications. Keywords: quality, research, gynecological cancer, operation, pathology, follow-up

Introduction: This article presents the preliminary results and experiences from an ongoing study aiming to develop and test a nurse-led multidisciplinary rehabilitation programme for women who undergo surgery for localised gynaecological cancers and evaluate the effect of the programme prospectively on self-assessed health and coping.Discussion: Preliminary results have shown that the programme has improved the participant's coping skills, physical well-being and energy level. The programme is easily established and cost-effective. Final results will be available from 2011. [ABSTRACT FROM AUTHOR]

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Abstract Background Ovarian cancer is the leading cause of death among women suffering from gynaecological malignancies in the Western world. Worldwide, approximately 200,000 women are diagnosed with the disease each year. This article deals with the health care seeking and symptom interpretation process among Danish women, who have a very high mortality rate. Methods The health seeking and symptom interpretation process was analysed via combining study methods. The material consisted of registry data dealing with the use of public health care and hospital services of Danish women, newly diagnosed with ovarian cancer. These results were combined with findings from semi-structured qualitative research interviews on women's bodily experiences with symptom development. Results A number of 663 Danish women with ovarian cancer attended 27 different kinds of primary health care providers in a total of 14,009 visits during 2007. The women also had 6,214 contacts with various hospitals, and obtained 562 different diagnoses. From the main theme "Women's experiences with the onset of symptoms" three sub-themes were identified: "Bodily sensations", "From bodily sensation to symptom", and "Health seeking and treatment start". In all cases the General Practitioner represented the first contact to public health care, acting as gate-keeper to specialist and hospital referral. The women were major users of public health care throughout the diagnostic process and subsequent treatment. All women held personal knowledge concerning the onset of their symptoms. The early symptoms of ovarian cancer might be uncharacteristic and non-disease-specific when interpreted as personal experiences, but they had similarities when analysed together. Conclusions Diagnostic delay in ovarian cancer seems far from being exclusively a medical problem, as the delay proved to be influenced by organisational, cultural, and social factors, too. Initiatives facilitating the diagnostic process and research concerning the selection of individuals for further investigation are indicated. The way in which the women interpreted their symptoms was influenced by their personal experiences, their cultural, and their social background. This became crucial to the diagnostic process. These issues need to be explored through further research on women's experiences during the diagnostic process.

There is high prevalence of the genetic SI variant c.273_274delAG in the sucrase-isomaltase-encoding gene in Greenland, resulting in congenital sucrase-isomaltase deficiency and thereby an inability to digest sucrose, the most common dietary sugar. There are no studies of Greenlanders' everyday experiences of sucrose intolerance related to this genetic variant. This study therefore explored, how Greenlandic people experience sucrose intolerance influences life and their attitudes towards research in health and genetics. The study is qualitative, using semi-structured focus groups and/or individual telephone interviews. The analysis was based on the phenomenological-hermeneutic approach of Paul Ricoeur, consisting naïve reading, structural analysis, interpretation and discussion. We identified two themes; "Sucrose intolerance impacts daily living", dealt with physical and emotional reactions and coping with social adaption to activities. And "openness to participate in genetic and health research" were caused by participants wanting more knowledge to improve their people and family's life. The study concluded that most of the participants with symptoms of sucrose intolerance experienced the impact in their daily life, both physically, emotionally, and socially. Further, they expressed openness to participate in health and genetic research. There is a need for more accessible health knowledge and support from health care to manage sucrose intolerance.

Non-communicable diseases such as chronic obstructive pulmonary disease (COPD) and type 2 diabetes mellitus (T2D) represent major challenges for health systems all over the world. In an interview study, we explored patient experiences and perspectives of being diagnosed and living with COPD or T2D in Greenland. Participants ( n  = 24) were selected by purposeful sampling and recruited by phone. We conducted individual semi-structured interviews at the National Hospital in Nuuk and the four regional hospitals. Interviews were audio-recorded, transcribed verbatim, and analysed using interpretive description. Three themes emerged: shock and shame on receiving the diagnosis, coping with a changed life, and varying needs for care and communication. We found that being diagnosed with COPD or T2D required a rapid change in the participants' everyday lives and lifestyle behaviours. Some self-managed their disease well and were able to transfer their knowledge and integrate it into their daily lives, while others struggled to make lifestyle changes. Additionally, living with COPD or T2D could be related to silence and shame. The findings contribute to a better understanding of living with COPD or T2D in the Arctic region and the development of future, culturally-adapted patient education initiatives.

Objective: When intended curative cancer surgery is not completed, the postoperative transition to palliative care represents a prognostic landmark to patients and their families. In patients referred for highly specialised surgery for peritoneal metastases from the intestinal tract and ovaries, surgery is not performed in approximately 25%. Still, little is known of their postoperative needs and preferences., Methods: We performed 14 qualitative research interviews with 12 patients (four men and eight women, aged 41-85 years) undergoing surgery for peritoneal metastases; five of these were together with a relative. Five of the participants had ovarian, and seven had colorectal cancer (four men and seven women). The interviews followed a semistructured interview guide, were audio recorded, transcribed verbatim and analysed using meaning condensation., Results: Patients accepted the surgeon's decision of refraining from the intended surgery. During the postoperative period, when realising the prognostic consequences, their needs changed rapidly, in some cases from day to day, and gradually they developed a reoriented focus on their lives. The findings were framed by two themes dealing with 'Change in treatment strategy' and 'Physical and psychosocial aspects of not undergoing curative surgery'., Conclusion: When curative cancer surgery is not completed as intended, patient-centred communication is essential for patients' psychosocial reorientation and quality of life. Further, to support their well-being and action competences, patients have a need for basic supportive care and physical restitution. Finally, high-quality postoperative palliative care needs to be coordinated, which requires staff training and reorganisation of pathways., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2024. No commercial re-use. See rights and permissions. Published by BMJ.)

Introduction: Radical surgery combined with chemotherapy is the only potential curative treatment of patients with advanced epithelial ovarian cancer (EOC). However, 43% of older Danish patients with EOC are not referred to surgery due to frailty, age, or fear of complications. Comprehensive geriatric assessment (CGA) has demonstrated ability to reduce frailty in older patients, but there is a knowledge gap regarding its effect before or during treatment in older adults with EOC. This protocol presents a randomized controlled trial (RCT), which evaluates the effect of CGA-based interventions including individualized physical exercise therapy in older adults with EOC during neoadjuvant chemotherapy (NACT)., Materials and Methods: This RCT will include patients aged ≥70 years with primary EOC referred to NACT. Patients will be randomized 1:1 to intervention or standard of care, along with neoadjuvant antineoplastic treatment. Stratification for performance status and center of inclusion will be performed. In the intervention arm, a geriatrician will perform CGA and corresponding geriatric interventions and patients will undergo an individualized home-based exercise program managed by a physiotherapist. All patients will be evaluated with Geriatric-8, modified Geriatric-8, clinical frailty scale, and physical tests at randomization. Predictive values (positive/negative) will be evaluated for CGA detected impairments. The primary endpoint is the proportion of patients referred to interval debulking surgery (IDS). Secondary endpoints include the proportion who complete oncological treatment, improvements in physical tests, quality of life measured by European Organization for Research and Treatment of Cancer-Quality of Life questionnaires at inclusion, after three cycles of chemotherapy, and at end of chemotherapy treatment. Furthermore, the association between results of geriatric screening tests, CGA, and physical tests with complication rate and progression free survival will be examined. The primary outcome will be analyzed with logistic regression in the intention-to-treat population. Power calculations reveal the need to enroll 216 patients., Discussion: The present study examines whether CGA-based interventions including individualized physical exercise can increase the referral rate for potential curative IDS in older patients with EOC. If successful, this will result in more patients undergoing surgery and completing chemotherapy, preventing complications, and ultimately improving quality of life and survival. The study setup may establish the basis for direct clinical implementation if proven effective., Competing Interests: Declaration of competing interest The authors declare that they have no competing interests., (Copyright © 2024 Elsevier Ltd. All rights reserved.)

Introduction: The Greenlandic population has one of the world's highest prevalence of otitis media (OM). Approximately 9-14% of all children suffer from OM during childhood. Due to the climate, lack of infrastructure, and minimal access to specialist services, the Greenlandic healthcare system operates under significant challenges. To support treatment implementation, we explored parental experiences of having a child with recurrent acute otitis media (rAOM) and chronic suppurative otitis media in Greenland (CSOM)., Methods: We applied a qualitative methodology with semi-structured interviews, to investigate parents' individual experiences. We included parents from six selected towns and settlements in Greenland, who were primary caregivers to minimum one child who had suffered from rAOM or CSOM. The interviews followed a semi-structured interview guide., Results: Eight interviews were conducted with ten parents (nine mothers, one father) to 13 children (nine girls, four boys) aged two to 20 years (median age five years). We carried out a hermeneutic-phenomenological, Ricoeur-inspired text analysis of data. The first episode of OM was associated with uncertainty about the condition, including pain relief and treatment. However, recurrence led to symptom recognition and a changed disease perception among the parents: from being a simple case of childhood OM to a recognition of a chronic condition that might lead to delayed linguistic development and hearing impairment., Conclusion: Under difficult healthcare situations, parents represented a unique resource in care and treatment implementation. Parents often feel alone with the responsibility of care and had concerns for their child's hearing and language development, and they wished for their experiences and observations to be actively included in consultations., Competing Interests: Declaration of competing interest All authors declare that they have no conflicting interests., (Copyright © 2024 Elsevier B.V. All rights reserved.)

Objective: Days alive and out of hospital (DAOH) is a validated outcome measure in perioperative trials integrating information on primary hospitalization, readmissions, and mortality. It is negatively associated with advanced age. However, DAOH has not been described for surgical treatment of epithelial ovarian cancer (EOC), primarily diagnosed in older patients., Methods: We conducted a Danish nationwide cohort study including patients undergoing debulking surgery for EOC from 2013 to 2018. DAOH was explored for 30 (DAOH30), 90 (DAOH90), and 180 (DAOH180) postoperative days in younger (<70 years) and older (≥70 years) patients with advanced-stage disease stratified by surgical modality (primary (PDS) or interval debulking surgery (IDS)). We examined the associations between patient- and surgical outcomes and low or high DAOH30., Results: Overall, 1168 patients had stage IIIC-IV disease and underwent debulking surgery. DAOH30 was 22 days [interquartile range (IQR): 18, 25] and 23 days [IQR: 18, 25] for younger and older patients treated with PDS, respectively. For IDS, DAOH30 was 25 days [IQR: 22, 26] for younger and 25 days[IQR: 21, 26] for older patients. We found no significant differences between age cohorts regarding DAOH30, DAOH90, and DAOH180. Low DAOH30 was associated with poor performance status, PDS, extensive surgery, and long duration of surgery in adjusted analysis., Conclusions: DAOH did not differ significantly between age cohorts. Surgical rather than patient-related factors were associated with low DAOH30. Our results likely reflect a high selection of fit older patients for surgery, reducing the patient-related differences between younger and older patients receiving surgical treatment., (© 2023 Published by Elsevier Ltd.)

Background: Although gynaecological cancer's negative effects on sexual function are well known, most studies on the subject have not included vulvar cancer patients or a multidimensional perspective on sexual health. Therefore, this review aimed to address this research gap and explored the impact of vulvar cancer on women's sexual health from a multidimensional perspective., Methodology: An integrated review was conducted, as described by Whittemore and Knafl. The PubMed, CINAHL, PsycINFO and Embase databases were searched in March 2021 and updated in August 2022 and March 2023. The data were thematically analysed using NVivo, and the PRISMA-ScR and ENTREQ guidelines were followed., Findings: The following themes were identified in the 28 reviewed articles: impact of a changed female body, impact on women's sexual identity, consequences for women's sexual relationships and unmet needs and loneliness caused by taboos about sexual health., Discussion: Women's impaired sexual health after vulvar cancer points to a great need to understand and holistically investigate sexual health. In addition, healthcare professionals have an obligation to care for the sexual health issues of patients with vulvar cancer. However, most questionnaires used in the selected studies revealed a narrow understanding of sexual health and focused on sexuality as a genital activity., Conclusion: The sexual health of women with vulvar cancer was tabooed and stigmatised for patients and healthcare professionals. Consequently, women received sparse sexual guidance, felt isolated and had unmet needs., Implications for Clinical Practice: Healthcare professionals need knowledge and training on how to break taboos and address the sexual needs of vulvar cancer patients. Systematic screenings for sexual health needs should be conducted using a multidimensional perspective., Trial and Protocol Registration: The protocol was preregistered at the Open Science Framework (www.osf.io), registration DOI: https://doi.org/10.17605/OSF.IO/YDA2Q PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution., (© 2023 The Authors. Journal of Clinical Nursing published by John Wiley & Sons Ltd.)

Striving for normalcy plays an important role in patients' quality of life and illness experience. Normalcy is a powerful and complex idea, and the term can be used intentionally or unintentionally to various effects. We aimed to raise awareness of the complexity of this idea of normalcy and thus promote a more critically reflective understanding among nurses and other health professionals. By raising questions about how we use normalcy in our discourses and the potential impact that our professionally socialized interpretations of what constitutes normal might have on patient experience, we can encourage nurses and other health professionals to develop an intellectual curiosity about how the idea of normalcy works, and to be more critically reflective about how they integrate normalcy language into their practices and patient-centered communications. By unpacking the ideas that normal is always a good thing in the context of patient experience, and that normalizing can neutralize that which is bad in the health care world, we can qualify the language used and the metamessages conveyed for the ultimate benefit of patients., (Copyright © 2022 Wolters Kluwer Health, Inc. All rights reserved.)

Introduction: To explore differences in surgical complexity, chemotherapy administration, and treatment delays between younger and older Danish patients with epithelial ovarian cancer (EOC)., Materials and Methods: We included a nationwide cohort diagnosed with EOC from 2013 to 2018. We described surgical complexity and outcomes, the extent of chemotherapy and treatment delays stratified by age (<70 and ≥ 70 years), and surgical modality (primary, interval, or no debulking surgery)., Results: In total, we included 2946 patients. For patients with advanced-stage disease, 52% of the older patients versus 25% of the younger patients did not undergo primary debulking surgery (PDS) or interval debulking surgery (IDS). For patients undergoing PDS or IDS, older patients underwent less extensive surgery and more often had residual disease after surgery >0 cm compared to younger patients. Furthermore, older patients were less often treated with chemotherapy. Older patients had PDS later than younger. We did not find any differences between age groups concerning treatment delays. Two-year cancer-specific survival differed significantly between age groups regardless of curatively intended treatment., Discussion: This study demonstrates that older patients are treated less actively concerning surgical and oncological treatment than younger patients, leading to worse cancer-specific survival. Older patients do not experience more treatment delays than younger ones., Competing Interests: Declaration of Competing Interest The authors report no conflicts of interest., (Copyright © 2022 The Author(s). Published by Elsevier Ltd.. All rights reserved.)

Purpose: To investigate the experiences, thoughts, and feelings that underlie and influence prehabilitation among cancer patients due to undergo major abdominal surgery., Materials and Methods: Prior to their surgery, sixteen patients with peritoneal carcinomatosis of colorectal or ovarian origin due to undergo major surgery received oral information and a leaflet with preoperative recommendations. They subsequently participated in individual, semi-structured interviews. Malterud's principles of systematic text condensation were used to analyse the interviews, and the concept of action competence inspired and framed the discussion., Results: Although the patients found themselves in an unpredictable and uncontrollable situation, they nevertheless knew what was important to them. These factors were contextualised in five themes that reflected the experiences, thoughts, and feelings that underlay and influenced their actions: "Perception of preparation," "The two-sided preoperative period," "Home or facility-based prehabilitation," "Stakeholders in prehabilitation," and "Reasons for taking action"., Conclusions: The patients demonstrated action competence in relation to their preoperative preparation. However, in relation to the kind of prehabilitation that required lifestyle changes, their action competence needed to be developed and supported. To do so, it is necessary to ask questions that cover the patients' perspectives of the what, when, where, who, and why of prehabilitation.IMPLICATIONS FOR REHABILITATIONPatients undergoing major, abdominal cancer surgery have very clear opinions about what are important to them during the preoperative period, and this is not only limited to prehabilitation-related actions.In order to develop patients' action competence in relation to prehabilitation, patients need more support and supervision from health professionals.Qualitative in-depth knowledge concerning the what, when, where, who, and why of prehabilitation should be taken into account in the development of future prehabilitation programmes.

Objective: To examine clinical trends in Denmark for younger and older epithelial ovarian cancer (EOC) patients, focusing on incidence, treatment, and survival changes., Methods: We included a nationwide cohort diagnosed with EOC from 2005 to 2018. We described age-standardized incidence, surgical patterns, residual disease trends, and cancer-specific survival stratified by age (<70 and ≥ 70 years), stage, and period (2005-09, 2010-13, 2014-18)., Results: We included 7522 patients. The incidence decreased from 16.3 (2005) to 11.4 (2018) per 100,000 woman-years, driven by the younger cohort. While the proportion of patients with stage IIIC-IV disease undergoing primary debulking surgery (PDS) decreased, the proportion of patients having interval debulking surgery (IDS) and no debulking surgery increased significantly. In 2014-18, 36% and 24% had PDS for younger and older patients, respectively, compared to 72% and 62% in 2005-09. In both age cohorts, the proportion of patients debulked to no residual disease increased significantly among patients with stage IIIC-IV and in the total cohort. Two-year cancer-specific survival increased from 75% (2005-09) to 84% (2014-18) for younger patients and from 53% to 66% for older patients. After adjusting for potential confounders, age ≥ 70 was associated with a 1.4-fold increased risk of cancer-specific death (95% confidence interval: 1.2,1.5)., Conclusions: The proportion of patients with advanced EOC not undergoing PDS or IDS increased significantly. During the same period, patients debulked to no residual disease, and cancer-specific survival increased. However, a survival gap in favor of the younger patients remains after adjusting for potential confounders., Competing Interests: Declaration of Competing Interest The authors report no conflicts of interest., (Copyright © 2021 The Authors. Published by Elsevier Inc. All rights reserved.)

This article deals with drivers for and barriers to patient involvement in Greenland hospital-care, from the patients' perspective.Data were generated in 2019, via semi-structured research interviews and field observations. At the National Hospital in Nuuk, participants were purposively included to ensure variation regarding diagnosis, age, sex, socio-demographics, and place of residence. A number of 11 patients participated in individual interviews. Concurrently, observations of bed-side care situations and interactions between health professionals and patients were conducted, and informal conversations were held with eight patients. Findings were analysed using Malterud's systematic text condensation, and constituted the following themes: "Patient characteristics"; "Interaction with staff members"; and "Personal experiences and prerequisites for information and care".One of the main findings was that personal expectations, confidence in the quality of hospital-care, language skills, conditions around family support, and taboos concerning not being able to take care of oneself, impacted patients' opportunities for involvement.It is concluded that patient involvement cannot be accomplished by simply focusing on patients' health competencies. To ensure that hospital-care is provided in partnership with patients and families, it is equally important that health professionals develop new skills, and that the healthcare system is re-organised towards a more patient- oriented approach.

Background and Aim: Patient activation (PA) and Patient Involvement (PI) are considered elements in good survivorship. We aimed to evaluate the effect of a follow-up supported by electronic patient-reported outcomes (ePRO) on PA and PI., Method: From February 2017 to January 2019, we conducted an explorative interventional study. We included 187 patients followed after intended curative complex surgery for advanced cancer at two different Departments at a University Hospital. Prior to each follow-up consultation, patients used the ePRO to screen themselves for clinical important symptoms, function and needs. The ePRO was graphically presented to the clinician during the follow-up, aiming to facilitate patient activation and involvement in each follow-up. PA was measured by the Patient Activation Measurement (PAM), while PI was measured by five indicator questions. PAM and PI data compared between (- ePRO) and interventional (+ ePRO) consultations. PAM data were analysed using a linear mixed effect regression model with intervention (yes/no) and time along with the interaction between them as categorical fixed effects. The analyses were further adjusted for time (days) since surgery., Results: According to our data, ePRO supported consultations did not improve PA. The average mean difference in PAM score between + ePRO and - ePRO consultations were - 0.2 (95% confidence interval - 2.6; 2.2, p = 0.9). There was no statistically significant improvement in PAM scores over time in neither + ePRO nor - ePRO group (p = 0.5). Based on the five PI-indicator questions, the majority of all consultations were evaluated as "some, much or very much" involved in consultation; providing a wider scope of dialogue, encouraged patients to ask questions and share their experiences and concerns. Nevertheless, another few patients reported not to be involved at all in the consultations., Conclusion: We did not demonstrate evidence for ePRO supported consultations to improve patient activation, and patient activation did not improve over time. Our results generate the hypotheses that factors related to ePRO supported consultation had the potential to support PI by offering a wider scope of dialogue, and encourage patients to ask questions and share their experiences and concerns during follow-up., (© 2021. The Author(s).)

Objective: To understand perspectives on and acceptability of prehabilitation among patients undergoing complex abdominal cancer surgery (cytoreductive surgery with or without hyperthermic intraperitoneal chemotherapy)., Methods: Seventy-nine patients admitted to a Danish colorectal or ovarian cancer centre participated in qualitative semi-structured interviews and/or registered their prehabilitation activities based on preoperative recommendations presented in a leaflet. Malterud's principles of systematic text condensation were used to analyse the interview data, and descriptive statistics were used to describe the activity registrations., Results: Five domains clarify central aspects of the patients' perspectives on and acceptability of prehabilitation: the preoperative period, attitudes towards prehabilitation, the actual prehabilitation performed, motivation to take action and the need for support., Conclusion: Patients undergoing major abdominal cancer surgery are interested in and positive towards prehabilitation, but it has to be on their terms. The patients need support and supervision, but it has to be provided in a setting and in a way that are in line with the patient's preferences, resources and values. Thus, patient involvement is necessary to create prehabilitation programmes that are feasible and fit into patients' everyday lives., (© 2021 John Wiley & Sons Ltd.)

Purpose: In this study, patient perspectives on their relative's involvement in gynaecological cancer treatment and care are investigated., Methods: In total 17 women participated in two qualitative research interviews each during their treatment period. By applying a phenomenological-hermeneutic text interpretation methodology, the findings were systematically identified, interpreted, and discussed. This process gave rise to two main themes: "Relatives include more than family members" and "Interactions with relatives and significant others"., Results: The findings showed that, besides family members, in particular neighbours and people who had experienced cancer themselves were an important and valuable support to the patients. Help with daily activities and errands, and providing informal company, represented a substantial support in difficult times, and generated a sense of social belonging and the experience of fellowship. Interactions with relatives were influenced by the patients' personal reflections and experiences and posed several positive as well as negative challenges. Firstly, the patients had many concerns about passing on the news of their cancer disease to their social network. Loneliness, in various representations, was a persistent theme, which reflected various experiences of vulnerability., Conclusion: Positive family relations represented a unique resource during cancer treatment; however, due to relatives' worries or lack of support, patients could experience strain. This perspective on relatives' involvement - from the patient's point of view - seems to be understudied., (Copyright © 2021 Elsevier Ltd. All rights reserved.)

Background: Cervical cancer screening (CCS) and human papillomavirus vaccination (HPVV) are effective measures against cervical cancer (CC). Attendance in HPVV and CCS provides the greatest protection, while combined non-attendance in HPVV and CCS provides little to no protection. It is hence concerning that some large ethnic minority groups show considerably lower HPVV and CCS attendance than other women-especially women from Middle-Eastern and North African (MENA) countries and Pakistan. Little is, however, known about the reasons for this low combined attendance pattern n., Aim: To explore perceptions of and barriers to HPVV and CCS, among MENA and Pakistani women in Denmark., Method: Focus group interviews were conducted. Data was transcribed verbatim, and analysed using systematic text condensation., Findings: Seventeen long-term resident women originating from six major MENA countries and Pakistan were included. Mean age was 36 years. We found that these women, across different age groups and descent, had sparse knowledge and understanding about CC, and their perceived relevance of disease prevention was low. Compared to HPVV, their barriers to CCS were more fixed and often linked to socio-cultural factors such as taboos related to female genitals and sexuality. Moreover, they presented unmet expectations and signs of mistrust in the healthcare system. However, at the end of the interviews, participants became more attentive toward CC prevention, particularly toward HPVV., Conclusion: Elements of insufficient knowledge and understanding of CC and its prevention were found among a group of MENA and Pakistani women. Their socio-cultural background further represents a barrier particularly towards CCS. Additionally, negative experiences and unmet expectations lessen their trust in the healthcare system. All of which underlines the need for new tailored CC preventive strategies for this group. Based on our findings we suggest that future studies develop and evaluate interventions aiming to improve HPVV and CCS, including user-involvement., Competing Interests: The authors have declared that no competing interests exist.

Rationale, Aims, and Objectives: Worldwide, the concept of patient involvement has a growing impact on health care. Involvement in care represents a benefit to many patients, but while being involved is inevitable for the patient, we assume that getting involved is not in all cases obtainable. On this background, we aimed to investigate patients' perceptions and experiences concerning their treatment and care in a clinical fertility treatment setting, and discuss how these may influence their possibilities for involvement in care., Method: Based on findings from focus-group interviews with women undergoing fertility treatment, we have dealt with two aspects that impact the patients' possibilities for getting involved in their care: Imbalanced power relations in clinical settings, and patients' experiences of their physical vulnerability. Framed by phenomenological-hermeneutic text interpretation theory key condensations were analysed and critically discussed., Results: We found that (a) to the individual patient it did not represent a free choice to seek and undergo treatment; (b) patients experienced substantial dependency, vulnerability, and anxiety during their clinical pathway., Conclusion: We conclude that it is essential to integrate also the influence of the clinical setting and the bodily aspects of care in the understanding of patient involvement in clinical practice., (© 2020 John Wiley & Sons, Ltd.)

Background: Patients' perspectives on standardised, multimodal prehabilitation programmes showed barriers to adherence. Further investigation of patients' ability to prepare is needed., Aim: To investigate what patients with cancer who were due to undergo major abdominal surgery actually were able to do when provided with preoperative, home-based, multimodal recommendations presented in a leaflet., Methods: Patients from the colorectal- or ovarian cancer centre, who were scheduled for major abdominal surgery, received a leaflet with preoperative recommendations. On a daily basis, the patients filled in what they had completed in relation to these recommendations, so that adherence could be investigated. Additionally, face-to-face interviews were conducted to evaluate patients' experiences of using the leaflet. Malterud's principles of systematic text condensation were used to analyse the interviews. A convergent design was used to merge the quantitative and qualitative data into a combined interpretation presented in the discussion., Results: A total of 53 patients returned a completed leaflet, and five patients were interviewed. In the combined interpretation, patients' ability to prepare was presented through four major domains. The domains were adherence and the importance of support, manageable actions leading to change, preparation in a broader perspective and impediments to preparation and to symptom relief., Conclusions: Patients prepared themselves in various ways, which were not limited to recommendations inspired by multimodal prehabilitation. Patients from the ovarian cancer centre increased their weekly exercise during the preoperative period, which indicates that the leaflet not only functioned as a data collection tool, but also motivated and supported the patients in prehabilitation-related actions. Patients' perspectives on prehabilitation need to be taken into account, when aiming to enhance patient-centredness and adherence., (© 2020 Nordic College of Caring Science.)

Background: Postoperative mobilisation is an important part of fundamental care. Increased mobilisation has positive effect on recovery, but immobilisation is still a challenge in postoperative care., Aims: To report how the establishment of a national nursing database was used to measure postoperative mobilisation in patients undergoing surgery for ovarian cancer., Methods: 'Mobilisation' was defined as at least 3 hours out of bed on postoperative day 1, with the goal set at achieving this in 60% of patients. Data entry was performed by clinical nurses on 4400 patients with ovarian cancer., Findings: 46.7% of patients met the goal for mobilisation on the first postoperative day, but variations in duration and type of mobilisation were observed. Of those mobilised, 51.8% had been walking in the hallway., Conclusions: A national nursing database creates opportunities to optimise fundamental care. By comparing nursing data with oncological, surgical and pathology data it became possible to study mobilisation in relation to cancer stage, comorbidity, treatment and extent of surgery.

Background: The value of using real-time patient-reported outcome (PRO) measures in cancer communication has gained attention both in the clinic and in research. Despite this, no internationally accepted guidelines or training programs for clinicians on how to engage in patient-centred communication based on PROs exist. Lack of training may complicate implementation and systematic use of PROs in the clinic. We aimed to develop a short and feasible manual and training session in PRO-based dialogue rooted in patient-centred communication, coined PROmunication., Methods: PROmunication was implemented in two studies using PROs in different clinical cancer settings. We interviewed clinicians twice during the development phase. First, adopting a clinical perspective, they provided ideas for content, length and structure of the training session and the manual. Second, they approved the draft of the manual with minor adjustments on how to document clinician-patient communication. The final version of the PROmunication tool was built on clinicians' input, theory on patient-centred communication, a literature review, and didactic considerations., Results: The one-page manual gave clinicians a brief and clear overview of how to prepare for, undergo and document a PRO-based consultation. Illustrations and verbal phrases were offered to operationalize and facilitate patient-centred communication. The training session included elements like evidence-based knowledge about the rationale, benefits and challenges of using PROs and comprised theory, experimental training and instructions for the use of the manual in clinical practice. Ad hoc training and feedback in the clinic followed the training session., Conclusions: This paper presents the development of a short, theory-driven manual and training session intended to support and engage clinicians in PRO-based dialogue leading to patient-centred communication. Further testing of the tool is necessary and adjustments may be required if the PROmunication tool should be applied in other clinical settings were patients are seen regularly. An evaluation of the tool is planned to be performed in future studies. Training in PROmunication may further systematic and consistent use of PRO data in the consultation, leading to patient-centred consultations and increased patient involvement.

We investigated the perspectives of patients, relatives and health professionals on the drivers and barriers to patient involvement (PI) in the treatment of peritoneal carcinomatosis with cytoreductive surgery (CRS) and hyperthermic intraperitoneal chemotherapy (HIPEC). During 2016-2017, individual and focus group interviews were conducted with purposively selected participants during CRS and HIPEC, supplemented by field observations. This material was analysed using meaning condensation (Kvale). Fifteen patients, eight relatives and nine health professionals participated in 31 individual and two focus group interviews, supplemented by 37 observations. The findings were structured into themes concerning treatment decisions, organisation of pathways, knowledge of the patient and life during treatment. Deciding to treat was determined not only by preoperative biomedical information, personal preferences but also findings during surgery. This circumstance put the patients under mental pressure and affected their ability to process the offered information. They furthermore perceived the pathway as complex and occasionally unclear, leading them to attempt to coordinate transitions themselves. The study has highlighted barriers to, rather than drivers of, PI. To promote PI during comprehensive complex cancer surgery, we suggest that patients and relatives are offered patient-centred care, such as support in posing questions, overview of their treatment pathway and coherent transitions., (© 2019 John Wiley & Sons Ltd.)

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., (© 2018 The Authors. Journal of Clinical Nursing Published by John Wiley & Sons Ltd.)

Purpose: Postoperative pain management is an ongoing challenge in surgical care, during which inadequate relief can contribute to postoperative complications, and nurses are key figures in this process. The aim of the present study was to gain knowledge of how nurses provide postoperative pain management for women undergoing major surgery for endometriosis., Design: An ethnographic field study, consisting of semi-structured interviews and participant observations, was conducted in a setting of 2 gynecological units within a large Scandinavian university hospital., Method: The participants were mainly nurses and patients. The overall focus for the field observations and interviews was on how the participants interacted and made care decisions concerning pain. The analysis focused on nurse-patient interaction in postoperative bedside care. A principal theme, pain-related nursing practice emerged, together with the sub-themes nurse-patient interaction, interpretation and assessment of pain and pain management, which represented a circular process, identified in bedside practice., Conclusions: To some extend the postoperative pain management was influenced by unexpressed health beliefs and routine actions, and patient involvement was not prominent. Furthermore, the existing guidelines for pain management did not seem useful to the nurses., Clinical Implications: There is a need to develop a new and more practice-oriented postoperative pain management, in ways that also integrate the patient experience., (Copyright © 2018 American Society for Pain Management Nursing. Published by Elsevier Inc. All rights reserved.)

Objective: Quality of preoperative and postoperative care is crucial to improve postoperative outcome of cancer surgery and to ensure that neither complications nor a poor general condition delays any subsequent radiochemotherapy or recovery. On this background, the Danish Gynecological Cancer Database (DGCD) established a nursing database in 2011. The aim of DGCD Nursing is to monitor the quality of preoperative and postoperative care and to generate data for research., Material and Methods: In accordance with the current data protection legislation, real-time data are entered by clinical nurses at all national cancer centers. The DGCD Nursing includes data of preoperative and postoperative care, and nurses are independently represented in the steering committee. The aim of the present article is to present the first results from DGCD Nursing and the national care improvements that have followed., Results: With national coverage of an average of 94%, 5726 patients have been registered since 2011. In patients undergoing surgery for ovarian, endometrial, and cervical cancer, 436 different variables monitor central preoperative and postoperative care elements within mobilization, nutritional status, pain score, vital functions, and psychosocial support., Conclusions: At national level, DGCD offers a comprehensive overview of the total patient pathway within gynecological cancer surgery. The DGCD Nursing has added to the quality and implementation of evidence-based preoperative and postoperative care and in addition supported formation of professional networks. With a continued validation of data, DGCD Nursing now constitutes a sound and unique basis for research within the field of preoperative and postoperative cancer care.

The importance of patient involvement is increasing in healthcare, and initiatives are constantly implemented to reach the ideal of involved and educated patients. This secondary analysis was initially embedded in a randomized controlled study where the aim was to gain insight into perceptions and experiences within a group of women undergoing fertility treatment through two focus group interviews. In this secondary analysis, we investigated how patient involvement was strived for in both clinical practice and research. During the analysis, it became apparent that the women exercised and maintained a clear perspective on their hope for a child, Project Child, while the interviewer pursued a treatment perspective, Project Treatment. Despite different perspectives, the conversation during the interviews seemed effortless, and it became apparent how the interviewer and the participants were actually focusing partly on the same, but primarily on different issues but without addressing or acknowledging this. Knowledge and awareness of the difference in perspectives is important when healthcare professionals seek to involve patients both in clinical practice and in research. Patient involvement in both research and clinical practice has shown to be a challenge and entails that pathways are organized and decisions shared by healthcare professionals., (© 2017 John Wiley & Sons Ltd.)

Endometriosis is a chronic disease affecting approximately 10% of fertile women. These women often have negative health care experiences. This study adds new knowledge about endometriosis care in a hospital setting and nurses' attitudes toward the disease. To explore how the personal attitudes of gynecological nurses, their specialized knowledge, and their clinical experiences influenced the way they conceptualized and cared for women with endometriosis, participant observations and semistructured interviews were conducted. Categorization of patients into certain kinds, with more or less legitimate needs, provided an important framework for practice. Specialized knowledge qualified the nurses' views of their patients and seemed to be conducive to sustained patient involvement. However, the organization of care based solely on medical specialization restricted a holistic approach. An important goal is, therefore, to investigate patients' perspectives of health and illness and to create participatory relationships with patients, regardless of their diagnosis., Competing Interests: Declaration of Conflicting Interests: The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Purpose: The study objective was to survey general health and coping in women undergoing ovarian cancer surgery, and subsequently to develop and test a supportive care intervention., Methods/materials: Women who underwent surgery on the suspicion of ovarian cancer participated in a follow-up questionnaire study in which the Short Form-36 Questionnaire was used to survey general health twice during the perioperative period and the Life Orientation Questionnaire (SOC) was used once to define the postoperative coping capacity. An evidence-based, preoperative supportive care programme was subsequently developed and tested. This consisted of lean methodology applied to clinical pathways, preoperative optimisation, and psychosocial care and support., Results: From 294 women allocated to three study groups, a total of 546 Short Form-36 questionnaires and 253 SOC questionnaires were available for analysis. The overall response rate was 86 %. The presence of ascites, a pelvic mass, and a Risk of Malignancy Index >200 proved to be appropriate clinical markers for intensified preoperative care. Concerning physical health, levels were low throughout the perioperative period; the majority however stayed within standard levels. Concerning mental health, levels were below standard during the entire period, but did improve with time, also in women in whom the potential cancer diagnosis was refuted. The preoperative differences between these groups leveled out postoperatively in terms of physical health. At the end of the perioperative period, the coping capacity was close to normal., Conclusions: A need for supportive care during the perioperative period was identified. This should be adjusted to the nature of the disease and the extent of the treatment. Participation in a preoperative supportive programme supported physical health during the perioperative period; however, further support of mental health seemed required.

Introduction. This paper deals with secular, spiritual, and religious existential concerns during severe illness. Materials and Methods. Qualitative research interviews were made before and after surgery with women who underwent final diagnostics, surgery, and chemotherapy for ovarian cancer. By applying a phenomenological-hermeneutic text interpretation methodology the findings were systematically identified, placed into meaning structures, interpreted, and critically discussed. Results. The analysis offered insight into the complexity of challenges and personal development over time in being a woman with ovarian cancer during her first treatment period. Although the women experienced their health to be seriously threatened, they also felt hope, will, and courage. The diagnostic procedures and treatment had comprehensive impact on their lives. However, hope and spirituality were important resources of comfort and meaning. Conclusion. Hope and courage to face life represent significant personal resources that are created not only in the interplay between body and mind but also between patients and their healthcare professionals. The women dealt with this in a dialectical manner, so that hope and despair could be present simultaneously. In this process secular, spiritual, and religious existential meaning orientations assisted the women in creating new narratives and obtain new orientations in life.

Background: Ovarian cancer is the leading cause of death among women suffering from gynaecological malignancies in the Western world. Worldwide, approximately 200,000 women are diagnosed with the disease each year. This article deals with the health care seeking and symptom interpretation process among Danish women, who have a very high mortality rate., Methods: The health seeking and symptom interpretation process was analysed via combining study methods. The material consisted of registry data dealing with the use of public health care and hospital services of Danish women, newly diagnosed with ovarian cancer. These results were combined with findings from semi-structured qualitative research interviews on women's bodily experiences with symptom development., Results: A number of 663 Danish women with ovarian cancer attended 27 different kinds of primary health care providers in a total of 14,009 visits during 2007. The women also had 6,214 contacts with various hospitals, and obtained 562 different diagnoses.From the main theme "Women's experiences with the onset of symptoms" three sub-themes were identified: "Bodily sensations", "From bodily sensation to symptom", and "Health seeking and treatment start". In all cases the General Practitioner represented the first contact to public health care, acting as gate-keeper to specialist and hospital referral.The women were major users of public health care throughout the diagnostic process and subsequent treatment. All women held personal knowledge concerning the onset of their symptoms. The early symptoms of ovarian cancer might be uncharacteristic and non-disease-specific when interpreted as personal experiences, but they had similarities when analysed together., Conclusions: Diagnostic delay in ovarian cancer seems far from being exclusively a medical problem, as the delay proved to be influenced by organisational, cultural, and social factors, too. Initiatives facilitating the diagnostic process and research concerning the selection of individuals for further investigation are indicated. The way in which the women interpreted their symptoms was influenced by their personal experiences, their cultural, and their social background. This became crucial to the diagnostic process. These issues need to be explored through further research on women's experiences during the diagnostic process.