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1.
Nutrients ; 16(8)2024 Apr 22.
Article in English | MEDLINE | ID: mdl-38674934

ABSTRACT

The Big Five personality traits-neuroticism, extroversion, openness to experience, agreeableness, and conscientiousness-represent continuous, individual features that affect a number of vital health aspects, including morbidity, self-reported health status, or lifestyle. The aim of this study was to analyze the relationship between the eating behaviors and engagement in physical activity of women with a hereditary predisposition to breast or ovarian cancer and the Big Five personality traits. A total of 357 women, participants of 'The National Program for Families With Genetic/Familial High Risk for Cancer', were included in the study. In the healthy group, the following statistically significant predictors were found in variables: agreeableness-meal frequency (ß = 0.151; p = 0.030); neuroticism-consumption of fruits and vegetables (ß = -0.177; p = 0.016) and cereal products (ß = -0.223; p = 0.002); openness to experience-consumption of plant-based fats (ß = 0.141; p = 0.034) and physical activity (ß = 0.153; p = 0.021). In the cancer group, the frequency of dairy consumption (ß = 0.286; p = 0.003) and physical activity (ß = 0.370; p = 0.000) were found to be statistically significant predictors for the openness to experience variable. Neuroticism is associated with less frequent consumption of fresh fruits and vegetables as well as cereal products. Openness to experience was more often linked with a higher frequency of dairy consumption, plant-based fats, and physical activity. Women with breast or ovarian cancer and a higher openness to experience consumed dairy and engaged in physical activity more often than their peers with the remaining personality traits.


Subject(s)
Breast Neoplasms , Exercise , Feeding Behavior , Genetic Predisposition to Disease , Ovarian Neoplasms , Personality , Humans , Female , Breast Neoplasms/genetics , Breast Neoplasms/psychology , Ovarian Neoplasms/genetics , Ovarian Neoplasms/psychology , Exercise/psychology , Middle Aged , Feeding Behavior/psychology , Adult , Diet , Aged
2.
BMC Cancer ; 23(1): 975, 2023 Oct 13.
Article in English | MEDLINE | ID: mdl-37833659

ABSTRACT

BACKGROUND: Several factors contribute to delayed presentation with ovarian cancer (OC) symptoms including poor symptom awareness and barriers to seeking help. This study explored the anticipated time to seek medical advice for possible OC symptoms and its association with OC symptom awareness. In addition, it examined perceived barriers that may delay help-seeking among Palestinian women. METHODS: A cross-sectional study was conducted among adult women (≥ 18 years) recruited from hospitals, primary healthcare centers, and public spaces in 11 Palestinian governorates. A modified version of the OC awareness measure was used to collect data in face-to-face interviews. The questionnaire comprised three sections: sociodemographic details, awareness of 11 OC symptoms and time to seek medical advice, and barriers to early presentation. RESULTS: Of 6095 participants approached, 5618 completed the OCAM (response rate = 92.1%). The proportion of participants who would immediately seek medical advice for a possible OC symptom varied based on the symptom's nature. For OC symptoms with pain, the proportion that reported immediate seeking of medical advice ranged from 7.9% for 'persistent low back pain' to 13.6% for 'persistent pain in the pelvis'. For non-specific potential OC symptoms, the proportion that reported immediate seeking of medical advice ranged from 2.3% for 'feeling full persistently' to 15.8% for 'increased abdominal size on most days'. Good OC symptom awareness was associated with higher likelihood of seeking medical advice within a week from recognizing 10 out of 11 OC symptoms. Emotional barriers were the most common barriers with 'feeling scared' as the most reported barrier (n = 1512, 52.4%). Displaying good OC symptom awareness was associated with a lower likelihood of reporting ≥ 4 emotional barriers (OR = 0.61, 95% CI: 0.38-0.98). CONCLUSION: Participants with good OC symptom awareness were more likely to seek medical advice earlier and to display fewer emotional barriers. Establishing educational interventions to raise OC awareness may help in promoting earlier help-seeking and, thus, facilitate earlier diagnosis and improved prognosis.


Subject(s)
Arabs , Ovarian Neoplasms , Adult , Humans , Female , Cross-Sectional Studies , Early Detection of Cancer , Health Knowledge, Attitudes, Practice , Ovarian Neoplasms/diagnosis , Ovarian Neoplasms/epidemiology , Ovarian Neoplasms/psychology , Patient Acceptance of Health Care/psychology , Pain
3.
Patient Educ Couns ; 113: 107786, 2023 08.
Article in English | MEDLINE | ID: mdl-37148840

ABSTRACT

OBJECTIVE: In the Netherlands, patients with ovarian cancer are offered genetic testing. Pre-test preparation may help counseling patients. The aim of this study was to determine if use of a web-based intervention, leads to more effective genetic counseling of ovarian cancer patients. METHODS: Between 2016 and 2018, 127 ovarian cancer patients referred for genetic counseling in our hospital participated in this trial. 104 Patients were analyzed. All patients filled out questionnaires pre- and post-counseling. The intervention group also completed a questionnaire after visiting an online tool. Length of consultation, patients' satisfaction, knowledge, anxiety, depression and distress were compared before and after counselling. RESULTS: The intervention group had the same level of knowledge compared to the counseling group, but at an earlier point in time. They were satisfied with the intervention (86%) and better prepared for counseling (66%). The intervention did not lead to shorter consultations. No differences in levels of anxiety, depression, distress and satisfaction were observed. CONCLUSION: Although consultation length was unaffected, the improvements in knowledge after online education and patients satisfaction indicates that this tool can be an effective addition to genetic counseling. PRACTICE IMPLICATIONS: Use of an educational tool may lead to a more effective, personalized way of genetic counselling and enables shared decision making.


Subject(s)
Genetic Counseling , Internet-Based Intervention , Ovarian Neoplasms , Genetic Counseling/psychology , Ovarian Neoplasms/genetics , Ovarian Neoplasms/psychology , Humans , Female , Netherlands , Patient Satisfaction , Health Knowledge, Attitudes, Practice , Anxiety , Adult , Middle Aged
4.
Gynecol Oncol ; 173: 106-113, 2023 06.
Article in English | MEDLINE | ID: mdl-37116391

ABSTRACT

OBJECTIVE: Increasing evidence suggests the fallopian tube as the site of origin of BRCA1/2-associated high-grade ovarian cancers. Several ongoing trials are evaluating salpingectomy with delayed oophorectomy (RRSDO) for ovarian cancer risk reduction and patients are beginning to ask their clinicians about this surgical option. This study sought to systematically review the available literature examining patient preferences regarding RRSDO and risk-reducing salpingo-oophorectomy (RRSO) to provide clinicians with an understanding of patient values, concerns, and priorities surrounding ovarian cancer risk-reducing surgery. METHODS: We conducted a systematic review in accordance with Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines (PROSPERO No.: CRD42023400690). We searched key electronic databases to identify studies evaluating acceptance and surgical decision-making regarding RRSO and RRSDO among patients with an increased risk of ovarian cancer. RESULTS: The search yielded 239 results, among which six publications met the systematic review inclusion criteria. Acceptance of RRSDO was evaluated in all studies and ranged from 34% to 71%. Factors positively impacting patients' acceptance of RRSDO included: avoidance of surgical menopause, preservation of fertility, concerns about sexual dysfunction, family history of breast cancer, and avoidance of hormone replacement therapy. Factors limiting this acceptance reported by patients included concerns regarding oncologic safety, surgical timing, and surgical complications. CONCLUSION: To date, few studies have explored patient perspectives surrounding RRSDO. Collectively, the limited data available indicate a high level of acceptance among BRCA1/2 carriers, and provides insight regarding both facilitating and limiting factors associated with patient preferences to better equip clinicians in the counseling and support of their patients.


Subject(s)
Breast Neoplasms , Ovarian Neoplasms , Humans , Female , BRCA1 Protein/genetics , BRCA2 Protein/genetics , Ovariectomy/methods , Salpingectomy/methods , Ovarian Neoplasms/genetics , Ovarian Neoplasms/prevention & control , Ovarian Neoplasms/psychology , Risk Reduction Behavior , Mutation , Genetic Predisposition to Disease
5.
Gynecol Oncol ; 171: 151-158, 2023 04.
Article in English | MEDLINE | ID: mdl-36905875

ABSTRACT

OBJECTIVE: Although advanced stage epithelial ovarian cancer is widely considered life-threatening, 17% of women with advanced disease will survive long-term. Little is known about the health-related quality of life (QOL) of long-term ovarian cancer survivors, or how fear of recurrence might affect QOL. METHODS: 58 long-term survivors with advanced disease participated in the study. Participants completed standardized questionnaires to capture cancer history, QOL, and fear of recurrent disease (FOR). Statistical analyses included multivariable linear models. RESULTS: Participants averaged 52.8 years at diagnosis and had survived >8 years (mean:13.5); 64% had recurrent disease. Mean FACT-G, FACT-O, and FACT-O-TOI (TOI) scores were 90.7 (SD:11.6), 128.6 (SD:14.8), and 85.9 (SD:10.2) respectively. Compared to the U.S. population using T-scores, QOL for participants exceeded that of healthy adults (T-score (FACT-G) = 55.9). Overall QOL was lower in women with recurrent vs. non-recurrent disease though differences did not reach statistical significance (FACT-O = 126.1 vs. 133.3, p = 0.082). Despite good QOL, high FOR was reported in 27%. FOR was inversely associated with emotional well-being (EWB) (p < 0.001), but not associated with other QOL subdomains. In multivariable analysis, FOR was a significant predictor of EWB after adjusting for QOL (TOI). A significant interaction was observed between recurrence and FOR (p = 0.034), supporting a larger impact of FOR in recurrent disease. CONCLUSION: QOL in long-term ovarian cancer survivors was better than the average for healthy U.S. women. Despite good QOL, high FOR contributed significantly to increased emotional distress, most notably for those with recurrence. Attention to FOR may be warranted in this survivor population.


Subject(s)
Cancer Survivors , Ovarian Neoplasms , Adult , Humans , Female , Quality of Life/psychology , Ovarian Neoplasms/therapy , Ovarian Neoplasms/psychology , Carcinoma, Ovarian Epithelial , Fear
6.
Article in English | MEDLINE | ID: mdl-36767056

ABSTRACT

Women who are found to carry a BRCA1/2 pathogenic variant experience psychological distress due to an increased risk of breast and ovarian cancer. They may decide between different preventive options. In this secondary analysis of data collected alongside a larger randomized controlled trial, we are looking at 130 newly found BRCA1/2 pathogenic variant carriers and how their coping self-efficacy immediately after genetic test result disclosure is related to their psychological burden and status of preventive decision making. Participants received the Coping Self-Efficacy Scale, the Hospital Anxiety and Depression Scale, the Impact of Event Scale, the Decisional Conflict Scale, and the Stage of Decision-Making Scale after positive genetic test result disclosure. We found that women with higher coping self-efficacy showed fewer symptoms of anxiety or depression and were less affected by receiving the genetic test result in terms of post-traumatic stress. However, coping self-efficacy had no relationship with any decision-related criteria, such as decisional conflict or stage of decision making. This shows that despite its buffering capacity on psychological burden, possessing coping self-efficacy does not lead to more decisiveness in preference-sensitive decisions.


Subject(s)
Adaptation, Psychological , Breast Neoplasms , Genetic Testing , Ovarian Neoplasms , Self Efficacy , Female , Humans , BRCA1 Protein/genetics , Breast Neoplasms/genetics , Breast Neoplasms/psychology , Genes, BRCA1 , Genes, BRCA2 , Morbidity , Mutation , Ovarian Neoplasms/diagnosis , Ovarian Neoplasms/genetics , Ovarian Neoplasms/psychology
7.
Gynecol Oncol ; 166(2): 254-262, 2022 08.
Article in English | MEDLINE | ID: mdl-35718565

ABSTRACT

PURPOSE: The Measure of Ovarian Symptoms and Treatment (MOST) concerns is a validated patient-reported symptom assessment tool for assessing symptom benefit and adverse effects of palliative chemotherapy in women with recurrent ovarian cancer (ROC). We aimed to examine (i) how symptoms within MOST symptom indexes track together (i.e. co-occur) and (ii) the association between MOST symptom indexes and key aspects of health-related quality of life (HRQL). METHOD: A prospective cohort of women with ROC completed the MOST-T35, EORTC QLQ-C30 and EORTC QLQ-OV28 at baseline and before each cycle of chemotherapy. Analyses were conducted on baseline and end-of-treatment data. Exploratory factor analysis and hierarchical cluster analysis identified groups of co-occurring symptoms. Path models examined associations between MOST symptom indexes and HRQL. RESULTS: Data from 762 women at baseline and 681 at treatment-end who completed all 22 symptom-specific MOST items and at least one HRQL measure were analysed. Four symptom clusters emerged at baseline and treatment-end: abdominal symptoms, symptoms associated with peripheral neuropathy, nausea and vomiting, and psychological symptoms. Psychological symptoms (MOST-Psych) and symptoms due to disease (ovarian cancer) or treatment (MOST-DorT) were associated with poorer scores on QLQ-C30 and OV28 functioning domains and worse overall health at both time points. CONCLUSION: Four MOST symptom clusters were consistent across statistical methods and time points. These findings suggest that routine standardized assessment of psychological and physical symptoms in clinical practice with MOST plus appropriate symptom management referral pathways is an intervention for improving HRQL that warrants further research.


Subject(s)
Carcinoma, Ovarian Epithelial , Ovarian Neoplasms , Quality of Life , Carcinoma, Ovarian Epithelial/psychology , Carcinoma, Ovarian Epithelial/therapy , Female , Humans , Ovarian Neoplasms/drug therapy , Ovarian Neoplasms/psychology , Prospective Studies , Surveys and Questionnaires , Syndrome
8.
PLoS One ; 17(2): e0262575, 2022.
Article in English | MEDLINE | ID: mdl-35157722

ABSTRACT

Citizen science (CS) approaches involving non-professional researchers (citizens) as research collaborators has been used infrequently in health promotion generally and specifically, in cancer prevention. Standardized CS approaches may be especially useful for developing communication interventions to encourage families to consider cancer genetic services. We engaged survivors of ovarian cancer and their close relatives as CS collaborators to collect and help interpret data to inform content for a website, printed invitation materials, and short-message reminders. We applied an implementation quality framework, and posed four research questions regarding the feasibility of CS: recruitment, data collection, data quality and evaluation of the experience. CS members were recruited through three networks: clinical sites, local and national cancer support organizations, and online ovarian cancer patient support groups. The professional research team operationalized theory-aligned CS tasks, five data collection options, question banks/scripts for creating surveys, structured interviews, online training and ongoing support from research coaches. 14 CS members agreed to the 12-week and 20-hour commitment for an honorarium. CS members opted to do both qualitative and quantitative assessments. CS members collected 261 surveys and 39 structured interviews. The largest number of surveys were collected for Task 1 (n = 102) to assess survivors' reactions to different possible options for motivating survivors to visit a study website; 77% of this data were complete (i.e., no missing values). Data collected for tasks 2, 3, 4, and 5 (e.g., assessment of survivors' and relatives' respective communication preferences) ranged from 10 to 58 surveys (80% to 84% completeness). All data were collected within the specified time frame. CSs reported 17 hours of work on average and regarded the experience positively. Our experience suggests that CS engagement is feasible, can yield comprehensive quantitative and qualitative data, and is achievable in a relatively a short timeline.


Subject(s)
Family/psychology , Genetic Services , Ovarian Neoplasms/psychology , Adult , Citizen Science/methods , Female , Humans , Interviews as Topic , Ovarian Neoplasms/genetics , Ovarian Neoplasms/pathology , Program Development , Research Personnel/psychology , Surveys and Questionnaires
9.
Int J Gynecol Cancer ; 32(6): 781-787, 2022 06 06.
Article in English | MEDLINE | ID: mdl-35169070

ABSTRACT

OBJECTIVE: Chemotherapy has multiple adverse effects, including chemotherapy-related cognitive impairment, the phenomenon colloquially referred to as 'chemobrain'. The objective of this study was to understand patient-reported experiences of this phenomenon in relation to chemotherapy administration among gynecologic oncology patients. METHODS: A prospective patient-reported outcomes program was implemented in the Gynecologic Oncology clinic of a tertiary academic institution in January 2018. Patients with endometrial or ovarian cancer who received chemotherapy were included through September 2019 in this cohort study. Patients completed the European Organization for the Research and Treatment of Cancer Quality of Life Questionnaire. Serial responses were compared before, during, and after chemotherapy using a mixed effects linear regression with random effects for repeated measures within patients and a fixed effect for endometrial versus ovarian cancer. RESULTS: Fifty patients were included who completed a total of 152 patient-reported outcome measures. Thirty-five questionnaires were administered before chemotherapy, 59 during treatment, and 58 at a median of 161 days after the final cycle of chemotherapy. Seventy-one percent of patients reported no difficulties with concentration before chemotherapy, which remained stable after chemotherapy (72%). Sixty-six percent reported no difficulty with memory before chemotherapy versus 52% after chemotherapy. There were significant differences in feeling tension (p<0.001), worry (p<0.001), and depression (p=0.02) before and after chemotherapy on mixed effects linear regression, with higher levels of adverse emotional symptoms before chemotherapy administration compared with after. Women reported more interference with their social lives during chemotherapy (mean 1.08) compared with before (mean 0.85) and after chemotherapy (0.75, p=0.04). CONCLUSIONS: While no overt memory issues were discovered with serial administration of patient-reported outcome measures, rates of adverse emotional symptoms such as depression, tension, and worry diminished after chemotherapy administration. Further study is needed about the phenomenon of chemotherapy-related cognitive impairment using a larger cohort.


Subject(s)
Chemotherapy-Related Cognitive Impairment , Genital Neoplasms, Female , Ovarian Neoplasms , Carcinoma, Ovarian Epithelial , Cohort Studies , Female , Genital Neoplasms, Female/drug therapy , Humans , Ovarian Neoplasms/psychology , Patient Reported Outcome Measures , Prospective Studies , Quality of Life
10.
Support Care Cancer ; 30(4): 3625-3632, 2022 Apr.
Article in English | MEDLINE | ID: mdl-35028717

ABSTRACT

BACKGROUND: Risk management intentions prior to genetic counseling predict risk management uptake following genetic testing. Limited studies examined the attitude and understanding towards genetic counseling/testing in underserved countries. The purposes of this study were to explore knowledge and attitude towards genetic counseling, testing, and risk management for breast and ovarian cancer, and to understand the factors influencing risk management intentions in women with cancer in Taiwan. METHODS: Cross-sectional with correlational design was used in this study. Participants were enrolled for genetic testing based on clinical criteria suspected of having hereditary cancer. Survey was conducted using a standardized questionnaire including (1) demographics and personal/family history of cancer; (2) prior experience or consideration of genetic testing and reasons for not considering; (3) perception and attitude towards genetic counseling; and (4) intentions for risk management with a hypothetical BRCA1 mutation status. Multinomial logistic regression was used to analyze the predictors of participants' intentions for cancer risk management strategies. RESULTS: A total of 430 women with cancer were analyzed in which 51.6% had family history of cancer in first-degree relatives. Only 30.7% had considered genetic testing and 28.4% had known about genetic counseling prior to the study. When prompted with the services of genetic counseling, the attitude towards genetic counseling was fairly positive (score of 19.8 ± 2.9 out of 25). Given hypothetical BRCA1 mutation status, enhanced breast cancer screening with annual breast MRI was much more accepted than cancer risk reducing interventions. More positive attitude towards genetic counseling (each score point increase) was associated with higher odds of intention for breast MRI (OR 1.20, 95% CI 1.09-1.32) and preventive tamoxifen (OR 1.11, 95% CI 1.02-1.22). Having considered genetic testing prior to the study was associated with higher odds of intention for all four risk management strategies: breast MRI (OR 2.99, 95% CI 1.46-6.11), preventive tamoxifen (OR 1.79, 95% CI 1.00-3.17), risk-reducing mastectomy (OR 2.24, 95% CI 1.13-4.42), and risk-reducing salpingo-oophorectomy (OR 2.69, 95% CI 1.27-6.93). CONCLUSION: Knowledge of genetic testing and positive attitude towards genetic counseling were associated with increased willingness to consider cancer risk management strategies for hereditary breast and ovarian cancer syndrome. Given the limited knowledge on genetic testing and counseling in the studied population, increasing public awareness of these services may increase adoption of the risk management strategies.


Subject(s)
Breast Neoplasms , Ovarian Neoplasms , Breast Neoplasms/psychology , Cross-Sectional Studies , Female , Genes, BRCA1 , Genes, BRCA2 , Genetic Predisposition to Disease , Genetic Testing , Humans , Logistic Models , Mastectomy , Mutation , Ovarian Neoplasms/psychology , Risk Management , Taiwan
11.
Gynecol Oncol ; 164(3): 615-621, 2022 03.
Article in English | MEDLINE | ID: mdl-34998598

ABSTRACT

OBJECTIVE: To determine the feasibility of hospital-based genetic counseling and testing (GC/T) Traceback for Ovarian Cancer (OC) patients, as proposed by the Division of Cancer Prevention and the Division of Cancer Control and Population Sciences, National Cancer Institute. METHODS: Living patients with OC were sent a letter explaining the availability of guideline-supported GC/T for at least BRCA1/2 and surrogates of deceased patients were called on the telephone. Outcomes of contact attempts were systematically recorded and statistically described. RESULTS: 598 Traceback-eligible OC patients diagnosed from 2006 to 2016 were identified (163 presumed-living and 435 deceased). Two living patients called our office and scheduled an appointment for GC/T after receiving a letter. For surrogates of prior patients, successful contact occurred in 25% of call attempts. Fourteen individuals (2 living patients and 12 surrogates) underwent genetic counseling. Of those 14, 10 individuals consented to genetic testing and 5 followed through with sample collection. None of these individuals had pathogenic variants (PVs). When surrogate call notes were reviewed, 58% reflected positive responses to contact, however 42% were noted to have negative or indifferent responses, which were most common among spouses. Total time spent for hospital-based Traceback was 109 h. CONCLUSIONS: Overall, hospital-based Traceback via letter and telephone contact of surrogates is time-intensive and results in minimal uptake of GC/T. To practically execute this type of outreach program, health systems should consider collection of alternative contact information to allow for electronic communication of patient surrogates. Our study also underscores the importance of timely GC/T while patients are in active cancer care.


Subject(s)
Breast Neoplasms , Ovarian Neoplasms , Breast Neoplasms/genetics , Cancer Care Facilities , Carcinoma, Ovarian Epithelial/genetics , Female , Genetic Counseling/methods , Genetic Testing/methods , Humans , Ovarian Neoplasms/diagnosis , Ovarian Neoplasms/genetics , Ovarian Neoplasms/psychology
12.
J Genet Couns ; 31(2): 497-509, 2022 04.
Article in English | MEDLINE | ID: mdl-34661949

ABSTRACT

Genetic counselors routinely assess and understand clients' needs at the beginning of a session. Attending a genetic counseling session with or without companions is an objective sign that genetic counselors can easily notice. This study focused on clients' reasons for their accompaniment status for genetic counseling, which we categorize into attending with or without a companion(s). A questionnaire survey and interviews were conducted using snowball sampling, starting with the chief executive officer (CEO) of the Japanese hereditary breast and ovarian cancer (HBOC) support group. Of 32 participants, 19 continued with an in-depth interview after answering the questionnaire. Five themes were identified from the interview: (1) personal confidence, (2) decision-making style, (3) family members' habits and time availability, (4) considerations and conflicts with family members, and (5) healthcare provider's suggestion. Our data suggested that the clients expected their companion(s) to play certain roles. This indicates that the reasons of accompaniment status will be helpful for genetic counselors to understand both clients' and their families' motivations, personalities, habits, and psychosocial backgrounds. In a high-context culture such as that of Japan, accompaniment status may be a helpful sign to understand clients' true worries. In addition, some companions may be future clients in genetic counseling, due to the genetic nature of the disease. In conclusion, our study indicated that it is important for genetic counselors to record accompaniment status before the initial genetic counseling and to pay attention to its reasons at the beginning of the session, which may lead them to understand the client's psychosocial background to facilitate better client-centered genetic counseling.


Subject(s)
Breast Neoplasms , Counselors , Ovarian Neoplasms , Breast Neoplasms/genetics , Breast Neoplasms/psychology , Counseling , Female , Genetic Counseling , Humans , Japan , Ovarian Neoplasms/genetics , Ovarian Neoplasms/psychology
13.
J Genet Couns ; 31(2): 470-478, 2022 04.
Article in English | MEDLINE | ID: mdl-34570943

ABSTRACT

Women with a personal history of breast or ovarian cancer who previously had BRCA1/2 testing now have the opportunity for additional genetic risk information through multi-gene panel testing. However, little is known about women's receptivity to further contact and uptake of genetic counseling and updated genetic testing. Utilizing a clinic database to identify potential participants, we prospectively contacted women in the United States with a personal and/or family history of breast or ovarian cancer who had negative BRCA1/2 testing, which was performed primarily between 2011 and 2018. Eligible and interested participants were scheduled for a genetic counseling appointment to discuss updated genetic testing using a multi-gene panel. We attempted to contact 455 participants, screened 203 (45%), and 103 (23%) completed a pre-test genetic counseling visit to discuss updated testing. Of these, 88 participants had updated multi-gene panel testing. Participants had an average age of 59 years, and most (78%) had breast cancer with an average age of 45 at diagnosis. The majority (97%) of participants were white. Of participants who underwent panel testing, 13% (n = 11) had at least one pathogenic variant identified. Most participants (86%) had an out-of-pocket cost of $100 or less for their panel. There is a sizable population of women with a personal and/or family history of breast or ovarian cancer and negative BRCA1/2 test results who would qualify for updated multi-gene panel testing. In our study, 59% of those reached who were eligible completed a pre-test genetic counseling visit. Clinics could consider an outreach program to offer genetic counseling and updated genetic testing. Supports for this type of effort may include coordinators and genetic counseling assistants and an available database with patients' contact information and prior genetic test results. Updated testing allows women more information about their risk and may expand the value of genetic counseling.


Subject(s)
Breast Neoplasms , Ovarian Neoplasms , BRCA1 Protein/genetics , BRCA2 Protein/genetics , Breast Neoplasms/diagnosis , Breast Neoplasms/epidemiology , Breast Neoplasms/genetics , Female , Genes, BRCA2 , Genetic Counseling , Genetic Predisposition to Disease , Genetic Testing/methods , Humans , Middle Aged , Ovarian Neoplasms/diagnosis , Ovarian Neoplasms/genetics , Ovarian Neoplasms/psychology
14.
J Clin Psychol Med Settings ; 29(1): 195-205, 2022 03.
Article in English | MEDLINE | ID: mdl-34114151

ABSTRACT

The aim of the present study was to examine the role of self-perceived burden, social support seeking, and social network diversity in loneliness and psychological distress among women with ovarian cancer. A cross-sectional design was employed whereby 130 women diagnosed with ovarian cancer, recruited through various online sources (e.g., social media), completed the study via Qualtrics. Participants completed questionnaires that assessed self-perceived burden, social support seeking, social network diversity, loneliness, and psychological distress (anxiety, depressive symptoms). The models examined indicated that there were indirect effects of self-perceived burden and social network diversity on psychological distress via loneliness. Social support seeking was not significant in the models. Loneliness, self-perceived burden, and social network diversity should be of clinical concern among those working to support women with ovarian cancer. Future studies on longitudinal patterns or examining other factors associated with loneliness are needed to better understand the mental health of women with ovarian cancer.


Subject(s)
Ovarian Neoplasms , Psychological Distress , Cross-Sectional Studies , Female , Humans , Loneliness/psychology , Male , Ovarian Neoplasms/complications , Ovarian Neoplasms/psychology , Social Networking , Social Support
15.
J Obstet Gynaecol ; 42(1): 139-145, 2022 Jan.
Article in English | MEDLINE | ID: mdl-33938358

ABSTRACT

We compared the quality of life (QoL) of women with early versus advanced epithelial ovarian cancer and examined predicting factors for the poor QoL. We classified 157 participants into 108 with early disease (stage I-II) and 49 with advanced disease (stage III-IV). They completed two questionnaires: EORTC QLQ-C30 and Chiang Mai University (CMU) ovarian cancer QoL. For EORTC QLQ-C30, the study groups were comparable regarding global health status/QoL, functional scales, and summary scores. The advanced group had worse scores on symptom scales specifically appetite loss and constipation. For CMU Ovarian Cancer QoL, the advanced group had worse scores only in the gastrointestinal domain but not in urinary, lymphatic, and sexual/hormonal domains. These findings remained mostly unchanged after excluding those with recurrence. In multivariable analysis, currently receiving treatment was consistently associated with worse QoL scores. The advanced stage had more adverse impact only on the gastrointestinal domains of QoL, mainly during periods of receiving chemotherapy.IMPACT STATEMENTWhat is already known on this subject? Survival outcome for women with epithelial ovarian cancer varies depending mainly on stage. Those who survive advanced stage disease could expect long-term disease and treatment-related morbidities that significantly affected QoL. However, there has been very limited information regarding QoL of women who have the early disease in comparison to those with more advanced disease especially in the context of Asian culture.What do the results of this study add? Apart from the higher prevalence of gastrointestinal symptoms reported by the patients with advanced disease, the general well-being and other symptom-specific domains of QoL were comparable between women with early and advanced diseases. Receiving treatment is a consistent predictor for poor QoL.What are the implications of these findings for clinical practice and/or further research? In comparison to early-stage epithelial ovarian cancer, the advanced stage had more adverse impact only on the gastrointestinal domains of QoL, mainly during periods of receiving chemotherapy. This information will be useful for patient counselling. Future research should examine the underlying causes of this finding.


Subject(s)
Carcinoma, Ovarian Epithelial/psychology , Neoplasm Staging/psychology , Ovarian Neoplasms/psychology , Quality of Life , Adult , Carcinoma, Ovarian Epithelial/diagnosis , Carcinoma, Ovarian Epithelial/pathology , Diagnostic Self Evaluation , Early Detection of Cancer , Female , Functional Status , Health Status , Humans , Middle Aged , Ovarian Neoplasms/diagnosis , Ovarian Neoplasms/pathology , Surveys and Questionnaires , Symptom Assessment
16.
Fam Cancer ; 21(1): 35-47, 2022 01.
Article in English | MEDLINE | ID: mdl-33751319

ABSTRACT

In a sample of individuals with ovarian cancer, we aimed to (a) identify factors associated with the psychosocial impact of genetic counseling and multigene panel testing, (b) identify factors associated with cancer genetics knowledge, and (c) summarize patient-reported recommendations to improve the genetic counseling and multigene panel testing process. Eligible participants in this secondary analysis of quantitative and qualitative survey data were English-speaking adults with ovarian cancer. Psychosocial impact was assessed using the Multidimensional Impact of Cancer Risk Assessment (MICRA) questionnaire. Knowledge of cancer genetics was assessed using the KnowGene scale. Significant predictors of MICRA and KnowGene scores were identified using multiple regression. Open-ended survey item responses were analyzed using conventional content analysis. Eighty-seven participants met eligibility criteria. A positive genetic test result was associated with greater adverse psychosocial impact (B = 1.13, p = 0.002). Older age (B = - 0.07, p = 0.044) and being a member of a minority racial or ethnic group (B = - 3.075, p = 0.033) were associated with lower knowledge, while a personal history of at least one other type of cancer (B = 1.975, p = 0.015) was associated with higher knowledge. In open-ended item responses, participants wanted clinicians to assist with family communication, improve result disclosure, and enhance patient and family understanding of results. A subset of individuals with ovarian cancer who receive a positive genetic test result may be at risk for adverse psychosocial outcomes. Tailored cancer genetics education is necessary to promote the equitable uptake of targeted ovarian cancer treatment and risk-reducing therapies. Interventions to enhance patient-clinician communication in this setting are a research priority.


Subject(s)
Breast Neoplasms , Ovarian Neoplasms , Adult , Breast Neoplasms/genetics , Carcinoma, Ovarian Epithelial/genetics , Female , Genetic Counseling/psychology , Genetic Predisposition to Disease , Genetic Testing/methods , Humans , Ovarian Neoplasms/genetics , Ovarian Neoplasms/psychology
17.
Gynecol Oncol ; 164(2): 421-427, 2022 02.
Article in English | MEDLINE | ID: mdl-34953629

ABSTRACT

OBJECTIVE: To describe the quality of life of women at an increased risk of ovarian cancer undergoing risk-reducing bilateral salpingo-oophorectomy (RRBSO). METHODS: Patients evaluated in our gynecologic oncology ambulatory practice between January 2018-December 2019 for an increased risk of ovarian cancer were included. Patients received the EORTC QLQ-C30 and PROMIS emotional and instrumental support questionnaires along with a disease-specific measure (PROM). First and last and pre- and post-surgical PROM responses in each group were compared as were PROMs between at-risk patients and patients with other ovarian diseases. RESULTS: 195 patients with an increased risk of ovarian cancer were identified, 155 completed PROMs (79.5%). BRCA1 or BRCA2 mutations were noted in 52.8%. Also included were 469 patients with benign ovarian disease and 455 with ovarian neoplasms. Seventy-two at-risk patients (46.5%) had surgery and 36 had both pre- and post-operative PROMs. Post-operatively, these patients reported significantly less tension (p = 0.011) and health-related worry (p = 0.021) but also decreased levels of health (p = 0.018) and quality of life <7d (0.001), less interest in sex (p = 0.014) and feeling less physically attractive (p = 0.046). No differences in body image or physical/sexual health were noted in at-risk patients who did not have surgery. When compared to patients with ovarian neoplasms, at-risk patients reported lower levels of disease-related life interference and treatment burden, less worry, and better overall health. CONCLUSIONS: In patients with an increased risk of ovarian cancer, RRBSO is associated with decreased health-related worry and tension, increased sexual dysfunction and poorer short-term quality of life. Patients with ovarian neoplasms suffer to a greater extent than at-risk patients and report higher levels of treatment burden and disease-related anxiety.


Subject(s)
Anxiety/psychology , Body Dissatisfaction/psychology , Carcinoma, Ovarian Epithelial/prevention & control , Ovarian Neoplasms/prevention & control , Patient Reported Outcome Measures , Prophylactic Surgical Procedures , Salpingo-oophorectomy , Sexual Dysfunction, Physiological/physiopathology , Adult , Aged , Carcinoma, Ovarian Epithelial/genetics , Carcinoma, Ovarian Epithelial/psychology , Carcinoma, Ovarian Epithelial/surgery , Colorectal Neoplasms, Hereditary Nonpolyposis/genetics , Colorectal Neoplasms, Hereditary Nonpolyposis/psychology , Colorectal Neoplasms, Hereditary Nonpolyposis/surgery , Female , Hereditary Breast and Ovarian Cancer Syndrome/genetics , Hereditary Breast and Ovarian Cancer Syndrome/psychology , Hereditary Breast and Ovarian Cancer Syndrome/surgery , Humans , Middle Aged , Ovarian Neoplasms/genetics , Ovarian Neoplasms/psychology , Ovarian Neoplasms/surgery , Quality of Life , Young Adult
18.
Int J Mol Sci ; 22(20)2021 Oct 09.
Article in English | MEDLINE | ID: mdl-34681570

ABSTRACT

Ovarian teratomas are by far the most common ovarian germ cell tumor. Most teratomas are benign unless a somatic transformation occurs. The designation of teratoma refers to a neoplasm that differentiates toward somatic-type cell populations. Recent research shows a striking association between ovarian teratomas and anti-N-methyl-D-aspartate receptor (anti-NMDAR) encephalitis, a rare and understudied paraneoplastic neurological syndrome (PNS). Among teratomas, mature teratomas are thought to have a greater relevance with those neurological impairments. PNS is described as a neurologic deficit triggered by an underlying remote tumor, whereas anti-NMDAR encephalitis is characterized by a complex neuropsychiatric syndrome and the presence of autoantibodies in cerebral spinal fluid against the GluN1 subunit of the NMDAR. This review aims to summarize recent reports on the association between anti-NMDAR encephalitis and ovarian teratoma. In particular, the molecular pathway of pathogenesis and the updated mechanism and disease models would be discussed. We hope to provide an in-depth review of this issue and, therefore, to better understand its epidemiology, diagnostic approach, and treatment strategies.


Subject(s)
Anti-N-Methyl-D-Aspartate Receptor Encephalitis/metabolism , Ovarian Neoplasms/psychology , Signal Transduction , Teratoma/psychology , Animals , Anti-N-Methyl-D-Aspartate Receptor Encephalitis/etiology , Autoantibodies/metabolism , Disease Models, Animal , Female , Humans , Ovarian Neoplasms/metabolism , Teratoma/metabolism
19.
Gynecol Oncol ; 163(2): 398-407, 2021 11.
Article in English | MEDLINE | ID: mdl-34481610

ABSTRACT

OBJECTIVE: The Measure of Ovarian Symptoms and Treatment (MOST-T35) is a patient-reported symptom index, developed and validated in the context of palliative chemotherapy for recurrent ovarian cancer (OC). We aimed to develop and validate a version suitable for surveillance of symptoms following first-line treatment for OC to support clinical follow-up. METHODS: In a prospective study of women following completion of first-line chemotherapy for OC, patients completed MOST-T35 every 3 months for up to 3.5 years and other patient-reported outcome measures. Construct validity (Spearman's correlations), discriminative validity (t-tests/ANOVAs assessing differences between clinically distinct groups), ability to detect clinically important symptoms (receiver operating characteristic analysis), and responsiveness (t-tests examining change) were assessed. RESULTS: Data from 726 women who received ≥3 cycles of chemotherapy, did not progress within 3 months, and completed ≥one MOST-T35 were analysed. The revised version, MOST-S26, has 26 items and 5 multi-item indexes: peripheral neuropathy (MOST-NTx), disease or treatment-related (MOST-DorT), abdominal (MOST-Abdo), and psychological symptoms (MOST-Psych), and MOST-Wellbeing, plus 9 individual items. Construct validity was confirmed (r range = 0.43-0.88). Discriminative validity confirmed expected differences between groups. MOST-NTx and MOST-Psych detected improvements in peripheral neuropathy and psychological symptoms respectively, whereas MOST-Abdo detected worsening of abdominal symptoms pre-recurrence. CONCLUSIONS: This study developed and validated the MOST-S26, for surveillance of women in follow-up after first-line chemotherapy for OC. MOST-S26 reliably detected improvement in symptoms of peripheral neuropathy, psychological distress and may detect symptoms of relapse. Administration of MOST-S26 in follow-up consultations could identify concerning symptoms and facilitate timely and appropriate intervention.


Subject(s)
Aftercare/methods , Neoplasm Recurrence, Local/diagnosis , Ovarian Neoplasms/diagnosis , Patient Reported Outcome Measures , Psychometrics/methods , Aged , Female , Health Status , Humans , Middle Aged , Neoplasm Recurrence, Local/prevention & control , Neoplasm Recurrence, Local/psychology , Ovarian Neoplasms/complications , Ovarian Neoplasms/psychology , Ovarian Neoplasms/therapy , Prospective Studies , Quality of Life , Treatment Outcome
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