Interventions to support decision making in people considering germline genetic testing for BRCA 1/2 pathogenic and likely pathogenic variants: A scoping review.

Pathogenic and likely pathogenic variants in BRCA1 and BRCA2 (BRCA1/2) are medically actionable and may inform hereditary breast and ovarian cancer (HBOC) treatment and prevention. However, rates of germline genetic testing (GT) in people with and without cancer are suboptimal. Individuals' knowledge, attitudes, and beliefs may influence GT decisions. While genetic counseling (GC) provides decision support, the supply of genetic counselors is insufficient to meet demand. Accordingly, there is a need to explore the evidence on interventions that aim to support BRCA1/2 testing decisions. We conducted a scoping review of PubMed, CINAHL, Web of Science, and PsycINFO using search terms related to HBOC, GT, and decision making. First, we screened records to identify peer-reviewed reports that described interventions to support BRCA1/2 testing decisions. Next, we reviewed full-text reports and excluded studies that lacked statistical comparisons or enrolled previously tested individuals. Finally, we extracted study characteristics and findings into a table. All records and reports were reviewed independently by two authors; decisions were tracked in Rayyan, and discrepancies were resolved through discussion. Of 2116 unique citations, 25 met the eligibility criteria. Articles were published between 1997 and 2021 and described randomized trials and nonrandomized, quasi-experimental studies. Most studies tested technology-based (12/25, 48%) or written (9/25, 36%) interventions. Nearly half (12/25, 48%) of interventions were designed to complement traditional GC. Of the interventions compared to GC, 75% (6/8) increased or had a noninferior effect on knowledge, and 67% (4/6) decreased or had a noninferior effect on decisional conflict. Intervention effects on GT uptake were mixed, which may reflect evolving eligibility criteria for GT. Our findings suggest novel interventions may promote informed GT decision making, but many were developed to complement traditional GC. Trials that assess the effects of decision support interventions in diverse samples and evaluate implementation strategies for efficacious interventions are warranted.

Knowledge, Perception, and Skills, and Practices of Oncology Nurses in Cancer Survivorship Care: a Scoping Review.

Survivorship care focuses on the well-being and quality of life of people affected by cancer. Oncology nurses play an essential role in survivorship care and must be equipped with the knowledge, skills, and competencies to provide survivorship care. This scoping review explored the existing literature on nurses' knowledge, perception, skills, or practices in delivering cancer survivorship care for adult cancer survivors. A scoping review was conducted through databases including PubMed, CINAHL, Scopus, Web of Science, and PsycInfo in February 2022, following the Joanna Briggs Institute methodology. Fourteen original research studies were included. Most of the studies were conducted in the USA and targeted oncology registered nurses. The studies primarily focused on the knowledge (n = 2, 14.3%), perception of responsibility (n = 8, 57.1%), and practice (n = 9, 64.3%) regarding survivorship care among oncology nurses, reporting widely varied results. Nine studies reported perceived skills, practice, and perceived barriers as the most used outcome measurements, while two assessed nurses' cancer survivorship care knowledge. The main gaps were discrepancies between oncology nurses' perceptions of responsibility and practices in delivering survivorship care. Lack of time, knowledge, and skills were reported as significant factors impeding survivorship care provision among oncology nurses. Limited research shows a gap in integrating knowledge into survivorship care practices among oncology nurses. Further studies are needed to develop educational programs on survivorship care to support the integration of survivorship care into oncology nurses' practice.

Community-based interventions designed to optimize health behaviors among cancer survivors: an integrative systematic review.

PURPOSE: The purpose of this review was to synthesize the evidence on community-based health behavior optimization interventions (physical activity, nutrition, weight management) with a focus on cancer survivors at risk for poor health outcomes. METHODS: This integrative review followed the methods and protocol outlined by the Joanna Briggs Institute Methods Manual for systematic reviews and was reported using PRISMA-Scr. Four databases, namely, PubMed, CINAHL, Web of Science, SportDiscus, were searched in March 2021 to identify articles addressing health behaviors among cancer survivors. RESULTS: The review included 43 articles describing unique interventions developed through community-based participatory research (CBPR). The majority of community-based interventions were designed to optimize exercise/physical activity (76.7%) exclusively or in combination with nutrition. Non-Hispanic White persons constituted most participants. Most interventions took place as a part of an established community program and recruited from existing community programs to evaluate intervention effects on specific health outcomes. Of the interventions, 88.3% improved at least one outcome measurement. CONCLUSION: The current studies have built on the strengths and resources of the community using existing programs. There was a lack of diversity in socioeconomic status and racial/ethnic background among participants of most interventions and inputs from partners such as cancer survivors, community, and healthcare organizations. Multiple health behavior interventions with longitudinal studies are needed for racial/ethnic minoritized cancer survivors. Future research should focus on achieving mutual benefits through iterative processes to develop sustainable community/research partnerships, ensuring long-term commitment, and disseminating knowledge gained from CBPR to and by all involved partners to improve health behaviors.

Palliative care needs of the cancer patients receiving active therapy.

PURPOSE: To identify cancer patients' palliative care needs with problem burden, problem intensity, and felt needs related to these problems while receiving cancer treatment. METHODS: This is a descriptive survey study conducted at a tertiary hospital with no palliative care services in Istanbul, Turkey, from September 2019 to February 2020. Data were collected using the Patient Information Form and the Three Levels of Needs Questionnaire (3LNQ). Descriptive statistics (frequency and percentage) were used to present data. RESULTS: The mean age of patients was 60.2 ± 13.0, and the mean duration since the diagnosis was 11.6 ± 21.4 months. Of the patients, 40.4% were diagnosed with gastrointestinal (GI) cancer, and 34.4% had stage 4 cancer. Patients mostly received help for their pain (85.7%), lack of appetite (64.8%), and nausea (73/7%). The most frequent unmet needs were problems with concentration (70%), worrying (68%), difficulties with sex life (63.6%), problems with being limited in work and daily activities (61.4%), and being depressed (58.5%) among patients who reported to have these symptoms. CONCLUSION: This study shows that patients with cancer require supportive and palliative care along with medical treatment for cancer and its treatment-induced physical and psychological symptoms. The study results have the potential to guide the development of palliative care services, especially for outpatient oncology settings in countries where palliative care services mostly focus on the end-of-life care. Further studies are also needed to focus on interventions to meet cancer patients' palliative care needs during the medical cancer treatment process with tailored palliative care delivery models.

Experiences of breast cancer survivors during the COVID-19 pandemic: a qualitative study.

PURPOSE: This study aimed to explore the impacts of the COVID-19 pandemic on the quality of life of breast cancer survivors. METHODS: This qualitative descriptive study included 18 breast cancer survivors who completed cancer treatment within the last five years in Istanbul, Turkey. A directed content analysis was performed using the quality-of-life domains as guiding themes. RESULTS: The mean age was 51 ± 5.9, and the average months since active treatment were 26.5 ± 9.8 (9-48). Six themes and associated categories are as follows: Physical functioning; Changes in physical activity and weight, new physical symptoms, Role functioning; Work-life, changes in household chores, Emotional functioning; Emotional changes, fear of having the COVID-19 infection, Cognitive Functioning; Risk Perception about the COVID-19 infection, reactions to the COVID-19 pandemic' measures, Social Functioning; Familial relationship changes, social interactions, General Health/Utilization of Healthcare services; Changes in routine follow-ups, changes in diet. CONCLUSION: Breast cancer survivors had different challenges causing new physical and psychological symptoms such as lymphedema, pain, burnout, and anxiety that may have long-term effects on their quality of life.

Interventions aiming to improve informed decision on prenatal screening and testing: A scoping review of the literature.

The aim of this scoping review was to explore interventions and their effect in facilitating decision making on prenatal screening and testing among pregnant women. This review was conducted according to the Joanna Briggs Institute Methods Manual for scoping reviews. Studies published 2000-2019 that consist of interventions to facilitate pregnant women's decision making in prenatal screening and testing were specifically reviewed. A total of 27 studies are included in this scoping review. In these studies, various methods, including face-to-face individual or group interventions, e-Health interventions, video-based interventions, written educational materials, and decision aid interventions, were developed and tested for their effectiveness in facilitating informed decision making on prenatal screening and testing. While these methods appeared to be effective, further studies involving diverse populations are needed to integrate them into practice. Genetic counselors and healthcare providers working with individuals who are referred for genetic education and counseling need to work collaboratively to facilitate informed decisions on prenatal screening of women and/or their partners.

The impact of pregnant women's health literacy on their health-promoting lifestyle and teratogenic risk perception.

This study was conducted to determine pregnant women's health literacy level and its effect on health-promoting lifestyle and perception of teratogenic risk related to medicine. The sample of the study consisted of 326 pregnant women. Women with high health literacy have more health-promoting lifestyles and lower teratogenic risk perceptions toward using antidepressants and influenza immunization during pregnancy. This study gives baseline data on health literacy and teratogenic risk perception of medicine usage during pregnancy in Turkish women.

Consanguineous marriage and its effect on reproductive behavior and uptake of prenatal screening.

The study aimed to determine the prevalence of consanguinity among pregnant women, its effect on reproductive behavior and the uptake of prenatal screening. The sample consisted of 842 pregnant women recruited to a prospective cohort study conducted in twenty-three cities from different regions in Turkey between June 2017 and March 2018. Of the women, 17.7% (n = 149) were in consanguineous marriages. The consanguineous couples were younger at the time of their marriages than non-consanguineous couples, and 49% of the consanguineous marriages were arranged. The educational levels of both spouses in consanguineous marriages were lower than those in non-consanguineous marriages. There was a statistically significant difference in the prevalence of the pregnant women having a prenatal screening test between women in consanguineous marriages (53%) and those in non-consanguineous marriages (78.2%). There were no statistically significant differences between the two groups in terms of having health problems during pregnancy, the number of pregnancies, abortions and/or stillbirths, the week of delivery and the birthweight of the baby. Healthcare providers play a key role in eliciting whether or not pregnant couples are consanguineous, providing a tailored risk assessment, education, and counseling about screening and diagnostic tests for early diagnosis and management of the fetus, explaining the testing process and possible outcomes, and helping couples make informed decisions regarding their reproductive options or pregnancy management.

Genetic Literacy of pregnant women and their use of prenatal screening and diagnostic tests in Turkey.

This study evaluated how genetic literacy of pregnant women in Turkey affects their use of prenatal screening and diagnostic tests. As a descriptive cross-sectional study, a Participant Identification Form and the Genetic literacy and Comprehension Measure (GLAC) were used to collect data. The sample of study consisted of 189 pregnant women who made regular antenatal care visits in Giresun, Turkey. The mean age was 29.5 ± 5.9 years and mean gestational week was 34.9 ± 5.09. Of the women, 76.7% had undergone prenatal screening tests, and 85.5% of them had learned about the tests from their doctors. The mean GLAC score of familiarity was 3.67 ± 1.78 (out of seven), and the genetic concepts answered correctly were 5.30 ± 1.79 (out of eight). No statistically significant relationship emerged between the women's genetic literacy and their use of prenatal screening or diagnostic tests. However, relationships were statistically significant between the genetic literacy of the women and the educational levels of the women themselves or their spouses, consanguineous marital status, parity, and use of folic acid supplements. Primiparous women who were highly educated, had a highly educated spouse, were not in consanguineous marriages, and had taken folic acid supplements during pregnancy were more literate in genetics. There is a need for more educational opportunities in order for women to increase their familiarity with genetic terms. Educating women will improve their understanding of genetics-related health services and increase their awareness of genetic diseases, which will allow them to take the appropriate actions for primary prevention.

Reliability and validity of a Turkish version of the Sexual Quality of Life - Male questionnaire: a methodological study.

Background The aim of this methodological study was to assess the reliability and validity of the Sexual Quality of Life - Male (SQoL-M) questionnaire translated and adapted to measure the sexual quality of life of men in Turkey and Northern Cyprus. METHODS: To assess the reliability and validity of the Turkish version of the SQoL-M questionnaire, in January and February 2017 we formed a sample of 128 men from Ankara, Turkey, and Girne, Northern Cyprus, to complete the questionnaire. Two weeks later, 65 of these men completed the questionnaire during a retest. Factor analysis was conducted to evaluate the questionnaire's factor structure, internal consistency and test-retest reliability analyses were used to assess reliability and Pearson's correlation coefficient was used to measure criterion-related validity. RESULTS: Cronbach's α for the Turkish version of the SQoL-M questionnaire was 0.91, with corrected item-total score correlations ranging from 0.432 to 0.819. The test-retest correlation, calculated to compare scale scores of both groups of participants, was 0.83 (P<0.001). We also observed a statistically significant relationship between the Turkish version of the SQoL-M questionnaire and the Arizona Sexual Experience scale. CONCLUSIONS: The Turkish version of the SQoL-M questionnaire is a valid, reliable instrument for evaluating the sexual quality of life of men in Turkey and Northern Cyprus.

Women with Family History of Breast Cancer: How Much Are They Aware of Their Risk?

The aims of this study are to assess knowledge of inheritance characteristics of breast cancer and risk reduction strategies and to determine risk perception and the factors affecting risk perception of women with family history. There is a gap in our understanding of risk perception and knowledge of genetic aspect of breast cancer and risk reduction strategies in women with a family history of breast cancer. The study design is descriptive cross-sectional study. Between January 2015 and 2016 at a training and research hospital in Turkey, 117 women who were the first- and second-degree relatives of breast cancer patients were included in the study. Perceived risk scale, cancer worry chart, and a knowledge assessment form were used to collect data. Of the women, 34.1% were first-degree relatives of a breast cancer patient, and knowledge score was 6.9 ± 2.19 out of 11. Almost half of the women (41.9%) moderately worry about the chances of getting breast cancer, and half of the women (51.3%) ranked their perceived risk as moderate (26-50% out of 100%). There is a significant difference between the perceived risk and educational level, having genetic testing, and a significant relationship between the perceived risk and worry level of women. However, breast cancer screening behavior was not affected by risk perception. The knowledge of women regarding inheritance characteristics of breast cancer and risk reduction strategies was moderate, but still majority of women have moderate or higher level of risk perception and are worried about getting breast cancer. Therefore, interventions should be planned to reduce worry and to increase risk reduction strategies such as screening and other health behaviors in women at risk for breast-ovarian cancer.

Women's knowledge and use of prenatal screening tests.

AIMS AND OBJECTIVES: The aim of the study was to determine the rate of use of prenatal screening tests and the factors affecting the decision to have a prenatal screening test in pregnant women in Turkey. BACKGROUND: Prenatal genetic screening as an optional service is commonly used to determine a level of risk for genetic conditions in the foetus. DESIGN: A quantitative cross-sectional survey. METHODS: Pregnant women (n = 274) who sought prenatal care from one hospital in Turkey were recruited and asked to complete questionnaires that were developed by the researchers. Descriptive and inferential statistics were used to analyse the data. RESULTS: Almost half (44·2) % of the women were primiparas, and the majority (97·8%) were in the third trimester of pregnancy. Only 36·1% of the women reported that they had prenatal screening by either the double test or triple test. Women had a low level of knowledge regarding prenatal screening: the mean knowledge score was 3·43 ± 3·21 of a possible score of 10. Having consanguineous marriage, a history of spontaneous abortion, a child with genetic disorder, multiparity or a longer marriage duration were positively correlated with accepting a prenatal screening test. CONCLUSIONS: This study has provided baseline data on the uptake and reasons for accepting or declining a prenatal screening in a cohort of Turkish women. There is evidence to suggest that more education is needed to improve knowledge and provide comprehensive nursing care to promote informed consent in this context. RELEVANCE TO CLINICAL PRACTICE: Perinatal nurses are ideally situated to inform pregnant women about prenatal screening tests to improve access to healthcare services and to ensure informed decisions are made by pregnant women and their partners.

Educational needs of nurses to provide genetic services in prenatal care: A cross-sectional study from Turkey.

The latest advances in genetics/genomics have significantly impacted prenatal screening and diagnostic tests. This cross-sectional descriptive study was conducted in inpatient and outpatient obstetric clinics in 24 hospitals in Turkey to determine knowledge of genetics related to prenatal care and the educational needs of perinatal nurses. A total of 116 nurses working in these clinics agreed to participate. The results included the level of knowledge among nurses was not affected by sociodemographic factors. Also, there is a lack of knowledge and interest in genetics among prenatal nurses and in clinical practice to provide education and counseling related to genetics in prenatal settings as a part of prenatal care.

Palliative care needs of patients with gynaecologic cancer.

AIMS AND OBJECTIVES: To identify gynaecologic cancer patients' palliative care needs using the three levels of needs questionnaire. BACKGROUND: Measuring both the burden of symptoms and patient-reported palliative care needs is valuable to improve cancer care. Data representing the palliative care needs of cancer patients in Turkey remain limited. DESIGN: A cross-sectional descriptive study. METHODS: A total of 134 cancer patients were included in the study at an oncology hospital in Turkey. A data collection form, a short-form medical outcomes health survey, and the three levels of needs questionnaire were used to collect data. RESULTS: The mean age of participants was 59 ± 8·76, of 69·4% were diagnosed with ovarian cancer and 52·2% had stage-3-4 cancer. Of patients, 69·3% had no desire for sexual intimacy, 33·5% expressed feeling as though they burden their families and 28·4% feel lonely at some level. The most prevalent problems were tiredness, to feel depressed and problems performing physical activities. The most frequent unmet needs were tiredness (60·5%), feel depressed (47·4%) and lack of appetite (38·5%). CONCLUSIONS: Gynaecologic cancer patients have relatively high prevalence of symptoms and unmet palliative care needs. Health professions mostly were unable to recognise and properly manage tiredness, depression as well as lack of appetite as an integral part of quality cancer care. RELEVANCE TO CLINICAL PRACTICE: Nurses trained in palliative care are needed to evaluate and meet cancer patients' needs regularly to improve quality of palliative care. Nurses should examine the underlying reasons for most prevalent problems and give nursing care accordingly.

Urinary Incontinence in Pregnant Women: Prevalence, Associated Factors, and Its Effects on Health-Related Quality of Life.

PURPOSE: The purpose of this study was to determine the prevalence of and risk factors for urinary incontinence (UI) during pregnancy and to evaluate its effect on health-related quality of life. DESIGN: Descriptive, cross-sectional study. SUBJECTS AND SETTING: The sample of the study comprised 287 pregnant women attending an outpatient clinic located in a research and training hospital in Ankara, Turkey. METHODS: Data were collected using an investigator-developed questionnaire that included 2 validated instruments, the International Consultation on Incontinence Questionnaire Short Form and Incontinence Quality of Life scale. RESULTS: The prevalence of UI in the study population was 21.3% (n = 61). Cumulative scores in pregnant women who "always" experienced UI and those who expressed a "large amount" of UI were lower than women with milder UI. Logistic regression analysis found associations between UI and age in years (odds ratio [OR] = 3.833; 95% confidence interval [CI], 1.763-8.332), parity (OR = 2.539; 95% CI, 1.135-5.675), third trimester versus first trimester (OR = 3.206; 95% CI, 1.178-8.725), and prior use of hormonal contraceptives (OR = 0.209; 95% CI, 0.085-0.513). CONCLUSIONS: Urinary incontinence is prevalent among pregnant women. Age, parity, and gestational week were associated with an increased likelihood of UI during pregnancy. Prior use of contraceptive hormones was associated with a reduced risk of UI during pregnancy.

Interventional Education Methods for Increasing Women's Participation in Breast Cancer Screening Program.

The purpose of this study was to evaluate the impact of the three methods of education-individual, individual with an educational brochure for spouses, and group-on participation on breast cancer screening in Turkey. A total of 550 home visits were made and 446 women were interviewed to accrue 327 women for the study, 26.7% of whom reported receiving a screening mammogram within the past 2 years. Participants were divided into one of the three educational groups, and following the educational session, they were invited to attend a breast cancer screening program. The results indicated that the decision to have a screening mammogram was influenced by the method of education and the knowledge score. Women, who were educated, within a group scored the highest. These results demonstrate that group education is an effective method of increasing breast cancer knowledge and screening awareness.

Evaluating dysmenorrhea in a sample of Turkish nursing students.

The aim of this study was to determine the prevalence and symptoms of dysmenorrhea, its relevant factors, and the rate of seeking medical help in a group of nursing students. A total of 380 students were included in the study. The demographic data questionnaire, a Daily Menstrual Symptom Rating Scale (DMSR), and the Visual Analog Scale for pain (VASP) were used as tools for data collection. The mean age of the participants was 20.31 ± 1.10 years. Most students had experienced dysmenorrhea (84.9%). Menstrual pain was frequently initiated on the first day of menstruation (77.8%). The most commonly reported menstrual problems were irregular menstrual cycles (27.2%) and oligomenorrhea (15.1%). Only 24.1% of students consulted their physicians for dysmenorrhea. The participants who had dysmenorrhea had significantly higher symptom scores than the participants who had not had dysmenorrhea, in terms of decreased activities, tension, hip and abdominal pain, backache, headache, and fatigue. Also, having a sister with dysmenorrhea increased the risk of dysmenorrhea. Although dysmenorrhea is a gynecological problem that is commonly seen in young women and that negatively affects daily activities and school life, the rate of seeking medical help is low. Adolescents should, therefore, be educated and counseled to determine the underlying cause and to increase the use of an effective treatment method. Considering that nurses should be better informed about dysmenorrhea causes and treatment options, a study of nursing students was undertaken.

Evaluation of the quality of life of caregivers in gynecological cancer patients.

The aim of this study was to determine the factors influencing the general quality of life and the quality-of-life subdimensions of family members caring for gynecological cancer patients. This descriptive study was conducted at a training and research hospital in Turkey. A total of 168 caregivers who were family members were included in the study sample. The data collection form and the Caregiver Quality-of-Life Index Cancer Scale were used to collect data. The mean age of family caregivers was 42.6 ± 12.30 and 81% were female. The caregivers had the most problem with coping with the depressive symptoms and the nausea of the patient and with medication use for the patient. Information on care was requested by 35.7%, whereas 70% of this group felt they needed information on every subject regarding disease and its treatment. It is also found that although some factors did not influence the general quality of life of caregivers, they did have a negative effect on various areas such as burden, disruptiveness, positive adaptation, and financial concerns. Health care professions should educate patients and their caregivers who are distant relatives of patient or providing care for older patients especially on medical drug usage after discharge and management of symptoms such as nausea.

Precision Health Symptom Science in Oncology Nursing.

Precision health is an emerging approach to predicting, preventing, treating, and managing disease. A goal of precision health symptom science research is the reliable prediction of patients' symptom burden to optimize robu.

Evaluation of the Nurse-Led Symptom Management Program for Patients With Gynecologic Cancer Undergoing Chemotherapy.

BACKGROUND: Patients with cancer experience symptoms concurrently. Nurses need to make multisymptom management and educate patients about self-management strategies. OBJECTIVE: The aim of this study was to evaluate the effect of a nurse-led symptom management program (NL-SMP), developed based on the Symptom Management Model, quality of life (QoL), and symptom severity of women with gynecological cancer undergoing chemotherapy. METHODS: This randomized controlled study sample consisted of 41 women receiving chemotherapy at an outpatient clinic in Istanbul, Turkey, between November 2018 and December 2019. European Organisation for Research and Treatment of Cancer Quality-of-Life Scale, Edmonton Symptom Assessment Scale, and Modified Brief Sexual Symptom Checklist-Women were used to collect data. Women were randomly assigned to 2 groups: intervention (n = 21) and control (n = 20). The intervention group attended the NL-SMP in addition to usual care. Data were collected at the first (time 1), third (time 2), and last chemotherapy cycle (time 3). Repeated measures analysis of variance, Cochran-Q, and t tests were used to analyze the data. RESULTS: In the intervention group, the QoL was significantly higher; symptom severity was lower than that of the control group at time 2 and time 3. At time 3, more women in the control group reported at least 1 sexual difficulty and were not satisfied with their sexual function, whereas there was no change for women in the intervention group. CONCLUSION: The NL-SMP, which consisted of systematic symptom assessment, prioritization of symptoms, providing symptom, and patient-specific education, decreased deterioration in the QoL and symptom severity of women. IMPLICATIONS FOR PRACTICE: Conducting multisymptom assessments, prioritizing symptoms, providing symptom- and patient-specific education, and supporting symptom self-management throughout treatment can lead to effective symptom management.