Logo: to the web site of Uppsala University

uu.sePublications from Uppsala University
Change search
Link to record
Permanent link

Direct link
Alternative names
Publications (10 of 72) Show all publications
Ioannou, C., Malmsten, C., Ehn, P., Holmberg, E., Dahm-kahler, P. & Stålberg, K. (2026). Exploring endometrial cancer in premenopausal women: A nationwide PremEnCa cohort study. Acta Obstetricia et Gynecologica Scandinavica, 105(1), 195-206
Open this publication in new window or tab >>Exploring endometrial cancer in premenopausal women: A nationwide PremEnCa cohort study
Show others...
2026 (English)In: Acta Obstetricia et Gynecologica Scandinavica, ISSN 0001-6349, E-ISSN 1600-0412, Vol. 105, no 1, p. 195-206Article in journal (Refereed) Published
Abstract [en]

Introduction An increased incidence of endometrial cancer has been noted, especially in premenopausal women in countries with rapid socioeconomic transition. In one of the largest patient cohorts of women <= 50 years, with manually validated register data, we aim to examine the pattern of disease of endometrial cancer and to evaluate the prognosis according to tumor and patient characteristics, focusing on body mass index. Material and Methods This is a nationwide population-based study on women <= 50 years with endometrial cancer, 2010-2021, using data from Swedish registries complemented by the reviewing of medical records. Overall survival and disease-free survival were calculated by the Kaplan-Meier method and the log-rank test. Multivariable regression analyses were performed. Results Of the total endometrial cancer cohort, 797 (5%) patients were <= 50 years of age (the PremEnCa cohort) with 0.9% under 40 years of age. Women <= 50 years of age had a higher prevalence of stage IA and endometrioid histology than older women. Among women <= 50 years of age, 46% met the criteria for obesity. No associations between socioeconomic factors and stage at diagnosis were found. Notably, women with lower Body Mass Index <20, had a higher proportion of non-endometrioid histology and higher stage of disease at the time of diagnosis. Median follow-up time was 4.2 (IOR 1.9-5.4) years. The recurrence rate was 6.1% in the PremEnCa cohort during the follow-up period, and the 5-year overall survival was 94.6% (95% CI: 92.6-96.0) for endometrioid and 68.5% (95% CI: 51.1-80.8) for non-endometrioid endometrial cancer. Only 36 of the 74 deaths were caused by endometrial cancer. In adjusted analyses for disease-free survival, non-endometrioid histology and International Federation of Gynecology and Obstetrics (FIGO) stage were associated with worse prognosis. Conclusions Endometrial cancer in premenopausal women is very rare and is associated with an excellent prognosis. Histology and FIGO stage were the strongest prognostic factors. Half of the deaths were due to other causes, which emphasizes the importance of focusing on general health aspects in this young endometrial cancer population.

Place, publisher, year, edition, pages
John Wiley & Sons, 2026
Keywords
endometrial cancer, obesity, population-based, PremEnCa, premenopausal, prognostic risk factors, recurrence, survival
National Category
Cancer and Oncology Gynaecology, Obstetrics and Reproductive Medicine
Identifiers
urn:nbn:se:uu:diva-583066 (URN)10.1111/aogs.70095 (DOI)001616365400001 ()41239761 (PubMedID)2-s2.0-105021829120 (Scopus ID)
Funder
Swedish Cancer Society
Note

Chrysanthos Ioannou and Cecilia Malmsten contributed equally to the manuscript.

Available from: 2026-03-24 Created: 2026-03-24 Last updated: 2026-03-24Bibliographically approved
Hess Engström, A., Romare Strandh, M., Enebrink, P., Stålberg, K., Ljungman, L. & Wikman, A. (2026). Holding it together: a longitudinal study of psychological distress and associated factors in mothers with cancer. BMC Psychology, 14(1), Article ID 485.
Open this publication in new window or tab >>Holding it together: a longitudinal study of psychological distress and associated factors in mothers with cancer
Show others...
2026 (English)In: BMC Psychology, E-ISSN 2050-7283, Vol. 14, no 1, article id 485Article in journal (Refereed) Published
Abstract [en]

Background: Women with cancer tend to report higher levels of psychological distress than men with cancer. A deeper understanding of how modifiable psychological factors are related to psychological distress in mothers with cancer could inform targeted prevention strategies. The aim of this study was to investigate how the modifiable psychological factors; parenting concerns, self-efficacy, and emotion regulation strategies, are associated with symptoms of depression, anxiety, stress, and posttraumatic stress in mothers with cancer.

Methods: In 2023, 222 mothers with cancer, aged 25-60 years, with varying time since diagnosis were included in a longitudinal observational study. Data were collected at inclusion and one year later. Outcome measures were symptoms of depression, anxiety, stress, and PTSD, assessed using Depression, Anxiety and Stress Scale (DASS-21) and PTSD Checklist for DSM-5 (PCL-5) questionnaires. Sociodemographic and health-related variables were used as covariates and parenting concerns, self-efficacy, and emotion regulation strategies (cognitive reappraisal and expressive suppression) were used as explanatory variables in the hierarchical linear regression models.

Results: After controlling for sociodemographic and health-related variables, baseline symptom levels were the strongest predictors of symptoms of depression, anxiety, stress, and PTSD at one-year follow-up. With exception of parenting concerns in relation to depressive symptoms, modifiable psychological factors did not predict the outcomes after adjusting for the contribution of baseline symptoms.

Conclusions: Baseline symptom severity emerged as a strong predictor across all outcomes, as such early assessment of psychological symptoms may be particularly important for mothers with cancer. Future research should aim to diversify the study population to better capture differences in psychological symptoms across various cancer types, cancer stage, and age groups.

Place, publisher, year, edition, pages
Springer Nature, 2026
Keywords
Parenting concerns, psychological distress, PTSD, cancer
National Category
Cancer and Oncology Psychiatry
Identifiers
urn:nbn:se:uu:diva-584989 (URN)10.1186/s40359-026-04332-9 (DOI)001737343900001 ()41808168 (PubMedID)2-s2.0-105035488839 (Scopus ID)
Available from: 2026-04-30 Created: 2026-04-30 Last updated: 2026-04-30Bibliographically approved
Álvez, M. B., Bergström, S., Kenrick, J., Johansson, E., Åberg, M., Akyildiz, M., . . . Uhlén, M. (2025). A human pan-disease blood atlas of the circulating proteome. Science, eadx2678, Article ID eadx2678.
Open this publication in new window or tab >>A human pan-disease blood atlas of the circulating proteome
Show others...
2025 (English)In: Science, ISSN 0036-8075, E-ISSN 1095-9203, p. eadx2678-, article id eadx2678Article in journal (Refereed) Published
Abstract [en]

The human blood proteome provides a holistic readout of health states through the assessment of thousands of circulating proteins. Here, we present a pan-disease resource to enable the study of diverse disease phenotypes within a harmonized proteomics dataset. By profiling protein concentrations across 59 diseases and healthy cohorts, we identified proteins associated with age, sex, and BMI, as well as disease-specific signatures. This study highlights shared and distinct protein patterns across conditions, demonstrating the power of a unified proteomics approach to uncover biological insights. The dataset, covering 8,262 individuals and up to 5,416 proteins, serves as an online resource for exploring disease-specific protein profiles and advancing precision medicine research.

Place, publisher, year, edition, pages
American Association for the Advancement of Science (AAAS), 2025
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:uu:diva-569491 (URN)10.1126/science.adx2678 (DOI)001643421200001 ()41066540 (PubMedID)2-s2.0-105025246161 (Scopus ID)
Available from: 2025-10-14 Created: 2025-10-14 Last updated: 2026-01-22Bibliographically approved
Moskov, M., Hedlund Lindberg, J., Lycke, M., Ivansson, E., Gyllensten, U. B., Sundfeldt, K., . . . Enroth, S. (2025). Deep plasma proteomics identifies and validates an eight-protein biomarker panel that separate benign from malignant tumors in ovarian cancer. Communications Medicine, 5, Article ID 230.
Open this publication in new window or tab >>Deep plasma proteomics identifies and validates an eight-protein biomarker panel that separate benign from malignant tumors in ovarian cancer
Show others...
2025 (English)In: Communications Medicine, E-ISSN 2730-664X, Vol. 5, article id 230Article in journal (Refereed) Published
Abstract [en]

Background: Ovarian cancer has the highest mortality of all gynecological cancers and surgery is commonly used as final diagnostic. Available literature indicates that women with benign tumors could often be conservatively managed, but accurate molecular tests are needed for triaging when gold-standard imaging techniques are inconclusive or lacking.

Methods: Here, we analyzed 5416 plasma proteins in two independent cohorts (N1=171, N2=233) with women surgically diagnosed with benign or malignant tumors. Using one cohort as discovery, we compared protein levels of benign tumors with early stage (I-II), late stage (III-IV) or any stage (I-IV) ovarian cancer and trained risk-score reporting multivariate models including a fixed cut-off for malignancy. Associations and model performance was then evaluated in the replication cohort.

Results: We identify 327 biomarker associations, corresponding to 191 unique proteins, and replicate 326 (99.7%). By comparing the 191 proteins with their corresponding tumor gene expression we find that only 11% (21/191) have significant correlation. Through analyzes of protein-protein correlation networks, we find that 62 of the 191 proteins have high correlation with at least one other protein, suggesting that many of the associations are secondary effects. In the replication cohort, our model has areas under the curve (AUC = 0.96) corresponding to 97% sensitivity at 68% specificity. For early-stage tumors, we estimate the sensitivity to 91% at a specificity of 68% as compared to 85% and 54% for CA-125 alone.

Conclusions: Our results indicates that up to one third of benign cases can be identified by molecular measures thereby reducing the need for diagnostic surgery.

Place, publisher, year, edition, pages
Springer Nature, 2025
National Category
Cancer and Oncology Cell and Molecular Biology
Identifiers
urn:nbn:se:uu:diva-562188 (URN)10.1038/s43856-025-00945-0 (DOI)001507676500003 ()40506476 (PubMedID)2-s2.0-105007950468 (Scopus ID)
Funder
Swedish Research Council, 2022-06725Swedish Research Council, 2022-00857Knut and Alice Wallenberg FoundationSwedish Cancer Society, 220604FESwedish Cancer Society, 232874PJSwedish Cancer Society, 190008PJSwedish Cancer Society, CAN211848Uppsala University
Available from: 2025-07-04 Created: 2025-07-04 Last updated: 2025-07-04Bibliographically approved
Hübinette, M., Sundström-Poromaa, I., Persson, S., Elenis, E., Stålberg, K. & Forslund, M. (2025). Polycystic ovary syndrome and the risk of ovarian tumours. Gynecologic Oncology, 200, 1-7
Open this publication in new window or tab >>Polycystic ovary syndrome and the risk of ovarian tumours
Show others...
2025 (English)In: Gynecologic Oncology, ISSN 0090-8258, E-ISSN 1095-6859, Vol. 200, p. 1-7Article in journal (Refereed) Published
Abstract [en]

Objective

To explore the risk of ovarian cancer (OC) and its subtypes among women with PCOS.

Methods

This is a retrospective cohort study with a follow-up of 25 years. The study included 479,759 participants, of which 80,131 were diagnosed with PCOS and 399,628 were matched controls (1:5 ratio). The data were obtained from Swedish registers, primarily the National Patient Registry and the Swedish National Cancer Registry. We used Cox regression to calculate hazard ratios, both crude and adjusted, and 95 % confidence intervals (95 % CI).

Results

During the study period, 450 individuals were diagnosed with OC or borderline tumour of the ovary (BOT). Following adjustment for obesity, country of birth and education, women with PCOS did not have an increased risk of epithelial ovarian cancer (EOC), aHR: 1.00 (95 % CI 0.64–1.55). However, the risks of developing BOT and non-EOC were higher in women with PCOS, aHR: 1.61 (95 % CI 1.16–2.23) and aHR: 4.26 (95 % CI 2.50–7.03), respectively. When further subgrouping non-EOC, stromal tumours stood out with a seventh-fold increased risk among women with PCOS.

Conclusion

Women with PCOS are at higher risk of developing non-EOC and BOT than women without PCOS. Although the risk estimate is high, non-EOC is a rare diagnosis. Thus, the findings of this study may provide insights into the underlying mechanisms of PCOS and ovarian cancer, primarily non-EOC. However, they do not indicate any necessity for screening or alterations in the follow-up of women with PCOS.

Place, publisher, year, edition, pages
Elsevier, 2025
Keywords
PCOS, Ovarian cancer, Non-epithelial ovarian cancer, Borderline tumour of the ovary, Sex-cord stromal tumour
National Category
Gynaecology, Obstetrics and Reproductive Medicine Cancer and Oncology
Identifiers
urn:nbn:se:uu:diva-564967 (URN)10.1016/j.ygyno.2025.07.005 (DOI)001537592500001 ()40652611 (PubMedID)2-s2.0-105010209282 (Scopus ID)
Funder
Swedish Cancer Society, 243757
Available from: 2025-08-14 Created: 2025-08-14 Last updated: 2025-08-14Bibliographically approved
Sköld, C., Radestad, A. F., Bohlin, K. S., Bjurberg, M., Borgfeldt, C., Hellman, K., . . . Dahm-Kahler, P. (2025). Primary treatment and survival in malignant ovarian germ cell tumors: A nationwide population-based Swedish Gynecologic Cancer Group (SweGCG) study. Gynecologic Oncology, 203, 59-66
Open this publication in new window or tab >>Primary treatment and survival in malignant ovarian germ cell tumors: A nationwide population-based Swedish Gynecologic Cancer Group (SweGCG) study
Show others...
2025 (English)In: Gynecologic Oncology, ISSN 0090-8258, E-ISSN 1095-6859, Vol. 203, p. 59-66Article in journal (Refereed) Published
Abstract [en]

Objective. Although rare, malignant ovarian germ cell tumors (MOGCTs) account for 70 % of ovarian malignancies in women younger than 30 years. Given the rarity of MOGCTs and the limited population-based data, this study aims to examine national treatment patterns and survival in women with MOGCTs, with a focus on fertility-sparing surgery. Methods. This nationwide population-based study included all women (>= 18 years) diagnosed with MOGCTs 2008-2022 in the Swedish Quality Register for Gynecologic Cancer. Main outcome was 5- and 10-year survival. Cox proportional regression models were used in univariable and adjusted survival analyses. Results. The study population included 184 women: 43 with dysgerminomas and 141 with non-dysgerminomas (including 59 immature teratomas, 33 teratomas with malignant transformation, 27 yolk sac tumors, and 22 other subtypes). All but one of the women underwent primary surgery; 54 % had fertility-sparing surgery, and no residual disease was achieved in 89 %. Adjuvant chemotherapy was given to 53 %. During a median follow-up of 5.6 years (range 0.1-15 years), 18 women died. No deaths occurred in women with fertility-sparing surgery. Ten-year relative survival was 95 % (95 % CI 88-103) and overall survival 88 % (95 % CI 82-93). Older age at diagnosis was associated with poorer survival (per year: HR 1.09, 95 % CI 1.05-1.14, p < 0.001), as was FIGO stage IV versus stage I (HR 58, 95 % CI 13-265, p < 0.001). Conclusions. MOGCTs had excellent survival outcomes in this nationwide population-based study, and fertility-sparing surgery was deemed safe. Future efforts should focus on improving outcomes in older women and those with stage IV disease. (c) 2025 The Authors. Published by Elsevier Inc. This is an open access article under the CC BY license (http://creativecommons.org/licenses/by/4.0/).

Place, publisher, year, edition, pages
Elsevier, 2025
Keywords
Non-epithelial, Germ cell tumors, Dysgerminoma, Non-dysgerminoma, Population-based
National Category
Cancer and Oncology Gynaecology, Obstetrics and Reproductive Medicine
Identifiers
urn:nbn:se:uu:diva-584236 (URN)10.1016/j.ygyno.2025.10.019 (DOI)001727467000001 ()41166982 (PubMedID)2-s2.0-105020306660 (Scopus ID)
Funder
Swedish Cancer Society
Available from: 2026-04-24 Created: 2026-04-24 Last updated: 2026-04-24Bibliographically approved
Wedin, M., Stålberg, K., Ottander, U., Akesson, A., Lindahl, G., Wodlin, N. B. & Kjolhede, P. (2025). Risk factors for lymph ascites after surgery for endometrial cancer and impact on lymphedema of the legs. A prospective longitudinal Swedish multicenter study. Acta Obstetricia et Gynecologica Scandinavica, 104(5), 976-987
Open this publication in new window or tab >>Risk factors for lymph ascites after surgery for endometrial cancer and impact on lymphedema of the legs. A prospective longitudinal Swedish multicenter study
Show others...
2025 (English)In: Acta Obstetricia et Gynecologica Scandinavica, ISSN 0001-6349, E-ISSN 1600-0412, Vol. 104, no 5, p. 976-987Article in journal (Refereed) Published
Abstract [en]

Introduction: The primary aim was to determine the occurrence of lymph ascites 4-6 weeks after surgery for endometrial cancer. Secondary aims were to assess risk factors for lymph ascites and the association with lymphedema of the legs. Material and Methods: This was a post hoc analysis of an observational prospective multicenter study, performed in 14 Swedish hospitals that included 235 women undergoing surgery for early-stage endometrial cancer between June 2014 and January 2018; 116 underwent surgery including pelvic and para-aortic lymphadenectomy and 119 had surgery without lymphadenectomy. Lymph ascites (free intraabdominal fluid or encapsulated pelvic or para-aortic fluid) was assessed by vaginal ultrasound 4-6 weeks postoperatively. Lymphedema was assessed using circumferential measurements of the legs preoperatively and 1 year postoperatively, enabling estimation of leg volume. A BMI-standardized leg volume increase >= 10% was classified as lymphedema. Evaluation of risk factors was performed using multiple logistic regression. Results: Lymph ascites 4-6-weeks postoperatively occurred in 28.5% (67/235) of the women. The estimated volume of the lymph ascites in these women was mean 28 mL (standard deviation 48 mL) and median 14 mL (interquartile range 2-36 mL). Lymphadenectomy was a risk factor for lymph ascites (aOR 9.97; 95% CI 4.53-21.97) whereas the use of minimally invasive surgery (aOR 0.50; 95% CI 0.25-0.99) reduced the risk. Twenty-two of 231 women (9.5%) developed lymphedema of the legs 1 year after surgery. The presence of lymph ascites was predictive of lymphedema (aOR 3.90; 95% CI 1.52-9.96). Conclusions: Lymph ascites was common 4-6 weeks after surgery but in a low and clinically insignificant volume. Lymphadenectomy was a strong risk factor for lymph ascites and the use of minimally invasive surgery seemed to reduce the risk. Detection of lymph ascites at early postoperative follow-up may be a means of selecting patients at high risk of developing lymphedema after treatment with endometrial cancer for preventive measures against lymphedema progression.

Place, publisher, year, edition, pages
John Wiley & Sons, 2025
Keywords
endometrial cancer, incidence, lymph ascites, lymphedema, risk factors, surgery
National Category
Cancer and Oncology Gynaecology, Obstetrics and Reproductive Medicine Surgery
Identifiers
urn:nbn:se:uu:diva-557364 (URN)10.1111/aogs.15077 (DOI)001437030900001 ()40035366 (PubMedID)2-s2.0-86000264680 (Scopus ID)
Available from: 2025-05-27 Created: 2025-05-27 Last updated: 2025-05-27Bibliographically approved
Karlsson, E., Vorobii, O., Silins, I., Sundström Poromaa, I., Stålberg, K. & Lomnytska, M. (2025). Splenectomy as an indicator for ovarian cancer spread and complete cytoreduction. Gynecologic Oncology, 197, 121-128
Open this publication in new window or tab >>Splenectomy as an indicator for ovarian cancer spread and complete cytoreduction
Show others...
2025 (English)In: Gynecologic Oncology, ISSN 0090-8258, E-ISSN 1095-6859, Vol. 197, p. 121-128Article in journal (Refereed) Published
Abstract [en]

Objective: Complete cytoreductive surgery (CRS) is a gold standard in advanced ovarian cancer (OC) treatment, and most of the time, requires upper abdominal procedures. However, there is an enormous variation regarding the reported incidence of splenectomies, and the safety and prognosis of this procedure is largely unknown. The aim of this study was to evaluate the impact of splenectomy on surgical outcomes, complications and overall survival (OS) in primary OC surgery.

Methods: This prospective observational cohort study comprised patients with stage IIIC-IV OC who underwent primary CRS. Cases and controls were defined based on whether splenectomy had been performed or not. Comparisons between the groups were made using logistic regression models, receiver-operator characteristics and survival analyses i.e. Kaplan-Meier and Cox proportional hazard models.

Results: Splenectomy was performed in 206/354 (58 %) patients, and among these - 170 (82.5 %) spleen metastases were identified. High peritoneal cancer index (PCI) was an independent predictor of splenectomy (aOR = 1.27 [95 % CI: 1.21-1.34]), with a PCI cut-off of 16 indicating need for splenectomy (AUC = 0.884). Splenectomy, PCI and surgical complexity score were all independent predictors of high-grade postoperative complications. Splenectomy, high PCI and completeness of cytoreduction were independent predictors of worse OS. Type of spleen metastasis (hilar/capsular versus parenchymal) did not influence OS.

Conclusions: Splenic metastatic involvement is common in OC and splenectomy is predicted by high PCI. Survival prognosis is equally impaired by all types of spleen metastasis. Splenectomy is an indicator of high tumour burden, high surgical complexity and high-grade postoperative complications, impaired survival and, indirectly, of cytoreduction success. 

Place, publisher, year, edition, pages
Elsevier, 2025
Keywords
Ovarian cancer, Splenectomy, Peritoneal cancer index, Surgery complications, Primary cytoreduction
National Category
Surgery Cancer and Oncology
Identifiers
urn:nbn:se:uu:diva-562194 (URN)10.1016/j.ygyno.2025.04.592 (DOI)001510406100001 ()40344962 (PubMedID)
Funder
Erik, Karin och Gösta Selanders Foundation
Available from: 2025-07-03 Created: 2025-07-03 Last updated: 2025-07-03Bibliographically approved
Romare Strandh, M., Hovén, E., Sörensdotter, R., Stålberg, K., Enebrink, P., Ljungman, L. & Wikman, A. (2025). The Complexity of Being a Parent in the Hospital and a Patient at Home: A Qualitative Study on Parenting Concerns and Challenges Among Parents With Cancer. Cancer Nursing, 48(1), E9-E17
Open this publication in new window or tab >>The Complexity of Being a Parent in the Hospital and a Patient at Home: A Qualitative Study on Parenting Concerns and Challenges Among Parents With Cancer
Show others...
2025 (English)In: Cancer Nursing, ISSN 0162-220X, E-ISSN 1538-9804, Vol. 48, no 1, p. E9-E17Article in journal (Refereed) Published
Abstract [en]

Background Parents given a diagnosis of cancer must balance the demands of their illness and caregiving responsibilities. This can result in parental stress and have a negative impact on the well-being of the whole family. A greater understanding of the experiences of parents with cancer is necessary to provide adequate support.

Objective The aim of this study was to explore parenting concerns and challenges among parents with cancer who were caring for dependent children younger than 18 years.

Methods Semistructured interviews were carried out with 22 parents with cancer. Interviews were audio-recorded, transcribed, and analyzed using thematic analysis.

Results Parental concerns and challenges affected parents in their parental role and their everyday family life. Three overarching themes described the struggles in balancing life as a parent and as a patient: navigating dual roles as a parent with cancer, impact of cancer on parenting, and impact on family life. Parents’ primary focus was on their children’s well-being, and they struggled to manage their own expectations of parenting and the demands on their role in the family.

Conclusion The results highlight the complexity of being a parent with cancer while caring for dependent children. To support parents during the cancer journey, it is important to understand the consequences of their illness on their parental role and the family.

Implications for Practice Supporting parents to feel secure in their parental role and providing support to them during their cancer journey should be integrated into routine cancer care, where parenting concerns and challenges are addressed.

Place, publisher, year, edition, pages
Wolters Kluwer, 2025
National Category
Nursing
Identifiers
urn:nbn:se:uu:diva-512385 (URN)10.1097/ncc.0000000000001276 (DOI)001153164700001 ()37731179 (PubMedID)2-s2.0-85194925243 (Scopus ID)
Available from: 2023-09-25 Created: 2023-09-25 Last updated: 2025-04-20Bibliographically approved
Bjurberg, M., Hellman, K., Säll, T. A., Staf, C., Borgfeldt, C., Holmberg, E., . . . Dahm-Kähler, P. (2025). Validation of data quality in the Swedish quality register of gynecologic cancer for cervical cancer and vulvar cancer: a Swedish gynecologic cancer group (Swe-GCG) study. Acta Obstetricia et Gynecologica Scandinavica, 104(8), 1530-1538
Open this publication in new window or tab >>Validation of data quality in the Swedish quality register of gynecologic cancer for cervical cancer and vulvar cancer: a Swedish gynecologic cancer group (Swe-GCG) study
Show others...
2025 (English)In: Acta Obstetricia et Gynecologica Scandinavica, ISSN 0001-6349, E-ISSN 1600-0412, Vol. 104, no 8, p. 1530-1538Article in journal (Refereed) Published
Abstract [en]

Introduction

Population-based registers provide an important source of real-world data. The growing number of large cohort studies using data from cancer registers makes validation of such registers important. The Swedish Quality Register of Gynecologic Cancer (SQRGC) is a nationwide population-based register containing data on patient and tumor characteristics, treatment, and follow-up. To ensure that the results from research and quality assurance reports using SQRGC data are robust and reliable, the accuracy and completeness of the register need to be validated. The aim of this study was to evaluate the quality of data on cervical cancer and vulvar cancer in the SQRGC.

Material and Methods

Quality of data in the SQRGC was investigated by evaluating completeness, timeliness, comparability, and validity in accordance with recommendations from the International Agency for Research on Cancer and the national Swedish guidelines on validation of cancer registers. Completeness was evaluated by coverage relative to the Swedish National Cancer Register, and timeliness as the time from diagnosis until entry into the SQRGC. We randomly selected 276 women diagnosed with cervical cancer (n = 138) and vulvar cancer (n = 138) between 2014 and 2019 for validation. An external monitor manually re-abstracted data on 10 core variables per sub-register from the patients' medical records. Comparability was assessed by reviewing the adherence to international standards regarding coding. Validity was evaluated by the agreement between re-abstracted data and original data in the SQRGC. Correlations were estimated using Pearson's correlation coefficient and Cohen's kappa coefficient.

Results

For cervical cancer, the completeness was 99% and the timeliness was 87.1% within 12 months. The corresponding figures for vulvar cancer were 100% and 87.9%, respectively. Adherence to international coding standards was satisfactory. The median degree of agreement between re-abstracted data and data in the SQRGC was 90.8% (range 73.2%–100%) for cervical cancer, and 85.4% (range 59.6%–98.2%) for vulvar cancer.

Conclusions

The data on cervical and vulvar cancer in the SQRGC are of adequate quality and may well be used for research and clinical purposes.

Place, publisher, year, edition, pages
John Wiley & Sons, 2025
Keywords
cancer register, cervical cancer, data quality, quality register, validation, vulvar cancer
National Category
Cancer and Oncology Gynaecology, Obstetrics and Reproductive Medicine
Identifiers
urn:nbn:se:uu:diva-567248 (URN)10.1111/aogs.15152 (DOI)001483190300001 ()40331784 (PubMedID)2-s2.0-105004574170 (Scopus ID)
Funder
Swedish Cancer Society
Available from: 2025-09-12 Created: 2025-09-12 Last updated: 2025-09-12Bibliographically approved
Projects
Primary Cytoreductive Surgery With and Without Hyperthermic Intraperitoneal Chemotherapy (HIPEC) for Ovarian Cancer and Prediction Markers for Treatment Response to HIPEC. [2023-00421_VR]; Uppsala UniversityParents with cancer - Feasibility and efficacy of an online group-delivered intervention to improve psychological well-being and parenting function [2023-01950_VR]; Uppsala UniversityEarly detection of relapse in ovarian cancer using home-sampling and a multiplex protein biomarker test - The FOLL-OV trial [2023-06412_VR]; Uppsala University
Organisations
Identifiers
ORCID iD: ORCID iD iconorcid.org/0000-0001-5527-8796

Search in DiVA

Show all publications