Psychological Aspects of Infertility - Results from an Actor-Partner Interdependence Analysis.

Introduction For some patients, undergoing medical treatment for infertility is a cause of major emotional stress which the couple needs to deal with together; it can be said that infertility is a shared stressor. From the literature it is known that a subjectively perceived sense of self-efficacy supports the patient's ability to cope adaptively with an illness. As the basis for this study, we assumed that high levels of self-efficacy are associated with low psychological risk scores (e.g., for anxiety or depressiveness), both in the patient themselves and in their partner. Accordingly, in infertility patients, targeted support to promote helpful self-efficacy expectations could represent a new counselling strategy that could enable psychologically vulnerable patients to better cope with the treatment procedure and treatment failures of medically assisted reproduction, making these patients less at risk with regard to psychosocial factors. Methods 721 women and men attending five fertility centers in Germany (Heidelberg, Berlin), Austria (Innsbruck), and Switzerland (St. Gallen, Basel) completed the SCREENIVF-R questionnaire to identify psychological risk factors for amplified emotional problems, as well as the ISE scale to measure self-efficacy. Using paired t-tests and the actor-partner interdependence model, we analyzed the data of 320 couples. Results Considering the study participants as couples, women had a higher risk score than men for four out of five risk factors (depressiveness, anxiety, lack of acceptance, helplessness). In all of the risk areas, it was possible to identify a protective effect from self-efficacy on the patient's own risk factors (actor effect). There was a negative correlation between the men's self-efficacy level and the women's feelings of depressiveness and helplessness (partner effect, man → woman). The women's self-efficacy levels had a positive correlation with acceptance and access to social support in the men (partner effect, woman → man). Conclusion Because infertility is generally something that a couple has to deal with together, future studies should focus on couples as the unit of analysis instead of just analyzing the men and women separately. In addition, couples therapy should be the gold standard in psychotherapy for infertility patients.

Fertility preservation in male cancer patients: A mixed methods assessment of experiences and needs.

INTRODUCTION: As fertility may be impaired due to gonadotoxic cancer treatment, fertility preservation should be offered to young cancer patients. Despite affirmative guidelines, sperm cryopreservation rates are still unsatisfying. OBJECTIVE: To examine how male cancer patients experience the current practice of counseling regarding fertility preservation and the needs they have for additional online support tools. METHODS: A cross-sectional mixed methods study of men above 18 years old with a cancer diagnosis within the last 10 years. The quantitative part was a retrospective questionnaire-based online survey; the qualitative part used focus-group methodology. The mean age of participants (n=72) was 32.94 years (SD 8.38) and the predominant cancer types were testicular cancer (55.6%), lymphomas (16.7%), and leukemias (13.9%). RESULTS: Participants rated the significance of the counseling as high (M=4.2, SD=1.05) and experienced professionals as supportive (M=4.37, SD=0.66). A majority of participants (70.8%) stated that they would use an additional support tool designed for male cancer patients. The tool should contain not only information about fertility preservation, but also about sexuality, virility, consequences for partners, and experience reports from other patients. CONCLUSIONS: Cancer patients undergoing gonadotoxic therapies should be counseled about fertility preservation. Professional, individualized information and a well-organized fertility preservation process improve the subjective experience of cancer patients. An online support tool that provides information about fertility preservation and general reproductive health was considered as a helpful, low-threshold offer that would be appreciated.

Long-term effectiveness of an online decision aid for female cancer patients regarding fertility preservation: Knowledge, attitude, and decisional regret.

INTRODUCTION: The decision, whether to undergo fertility preservation or not is highly demanding for cancer patients. Decision aids may act as an additional source of support. So far, only a limited number of decision aids regarding fertility preservation for female cancer patients exist and have been evaluated systematically. This paper presents the results of secondary analyses of the first randomized controlled trial evaluating an online decision aid for female cancer patients affected by different types of cancer. It focuses on fertility-related knowledge, attitude toward fertility preservation, and long-term effectiveness regarding decisional regret. MATERIAL AND METHODS: Young female cancer patients between 18 and 40 years of age were recruited after fertility counseling with a reproductive specialist. They were assigned to either the control group (counseling only) or the intervention group (counseling followed by the additional use of the decision aid). Both groups had to complete a questionnaire after counseling as well as 1 and 12 months later, covering topics such as fertility-related knowledge, attitude towards fertility preservation, decisional conflict and regret. Recruitment was ongoing during 18 months in eight fertility centers located in Switzerland and Germany. RESULTS: Mean age of participating women was 29.31 years (SD 4.57). Of the entire sample (n = 51) 53% were affected with breast cancer, 27.4% with lymphoma, and 19.6% with various other types of cancer. Knowledge regarding the most common fertility preservation methods was high and comparable in both groups. Positive attitude significantly exceeded negative attitude among all participants (p = 0.001). Although the altogether low scores for decisional regret were on a higher level in the control group (T2: mean = 19.00, SD = 13.24; T3: mean = 22.0, SD = 20.67) than in the intervention group (T2: mean = 14.12, SD = 11.07; T3: mean = 12.94, SD = 13.24), there were no statistically significant differences between and within both groups. There was a positive association between decisional conflict and decisional regret at T3 (p = 0.001, r = 0.510). CONCLUSIONS: This decision aid was suitable as an additional source of knowledge and may positively impact decisional regret in the long term. Results suggest that the provision of an online decision aid as a complement to fertility counseling may facilitate decision-making.

Randomized controlled trial on the effect of an online decision aid for young female cancer patients regarding fertility preservation.

STUDY QUESTION: Does the use of an online decision aid (DA) about fertility preservation (FP), in addition to standard counselling by a specialist in reproductive medicine, reduce decisional conflict compared to standard counselling alone? SUMMARY ANSWER: Female cancer patients who could make use of the online DA had a significantly lower short-term decisional conflict score. WHAT IS KNOWN ALREADY: Nowadays, female cancer patients have several options for preserving fertility, but having to decide whether to opt for FP within a short time frame after cancer diagnosis and before the start of treatment is challenging. According to previous studies focussing mainly on breast cancer patients, decisional conflict among these women is high, and they have expressed the need for additional support. STUDY DESIGN, SIZE, DURATION: The study was a randomized controlled trial including female cancer patients who were referred by their treating oncologist to a specialist in reproductive medicine for fertility counselling. Participants were randomly assigned to the control group (counselling only) or to the intervention group (counselling and additional use of the online DA immediately after counselling). Recruitment was ongoing from July 2016 to December 2017 at eight fertility centres in Switzerland and Germany. PARTICIPANTS/MATERIALS, SETTING, METHODS: The online DA was developed by an interdisciplinary team of specialists in reproductive medicine, gynaecologists, oncologists and psychologists. Of 79 recruited participants, 59 completed the first assessment and could therefore be enrolled in the study. They were asked to complete an online questionnaire at three time points: at T1, after counselling (control group, n = 27) or after counselling and the additional use of the DA (intervention group, n = 24); at T2, 1 month later (N = 41: control group, n = 23; intervention group, n = 18); and at T3, 12 months later (N = 37: control group, n = 20; intervention group, n = 17). The survey comprised questions about fertility-related knowledge, attitude towards FP, willingness to undergo FP and socio-demographic data, as well as the decisional conflict and decisional regret scales. MAIN RESULTS AND THE ROLE OF CHANCE: All participants showed low decisional conflict scores. Women who used the online DA in addition to counselling (intervention group) showed a significantly lower total score on the Decisional Conflict Scale (DCS) compared to the control group at T1 (P = 0.008; M = 12.15, SD = 4.38; 95% CI, 3.35-20.95) and at T2 (P = 0.043; M = 9.35, SD = 4.48; 95% CI, 0.31-18.38). At T3, the mean total score of the DCS was still lower in the intervention group compared to the control group; however, this group difference was no longer significant (P = 0.199, M = 6.86, SD = 5.24; 95% CI, -3.78 to 17.51). The majority of participants had already made a decision regarding FP (yes or no) at T1 (72.5%): 91.7% in the intervention group compared to 55.6% in the control group (P = 0.014). Those who had decided already at T1 showed significantly lower decisional conflict (P = 0.007; M = 13.69, SD = 4.89; 95% CI, 3.86-23.52). The average number of DA sessions per user was 2.23, and 80.8% of the participants completed the DA's value clarification exercises. Participants in the intervention group were satisfied with the DA and would recommend it to other patients. LIMITATIONS, REASONS FOR CAUTION: The recruitment of participants was challenging because of the emotionally difficult situation patients were in. This led to the limited sample size for final analysis. Education levels were high in two-thirds of the participants. It is difficult to say whether the DA would be equally effective in women with a lower educational background. WIDER IMPLICATIONS OF THE FINDINGS: There is evidence that the DA served as a helpful complement to the decision-making process for young female cancer patients qualifying for FP. This is, to our knowledge, the first randomized controlled trial evaluating a DA targeted at patients with several cancer types and in a language other than English (i.e. German). This study contributes to extending the range of the still limited number of DAs in the context of FP. STUDY FUNDING/COMPETING INTEREST(S): The study was supported by a research grant of the Swiss Cancer Research. The authors declare that no competing interests exist. TRIAL REGISTRATION NUMBER: Clinicaltrials.gov, trial no. NCT02404883. TRIAL REGISTRATION DATE: 19 March 2015. DATE OF FIRST PATIENT'S ENROLMENT: 4 July 2016.

Web-based counseling for families with parental cancer: Baseline findings and lessons learned.

Purpose: This is the first study in Switzerland to report on psychological adjustment in children of a parent with cancer using a web-based intervention during cancer therapy. Design/Sample: Twenty-two families participated in this randomized controlled web-based intervention program. Methods: Quality of life and emotional-behavioral well-being of children were examined using child self-reports, and parent proxy-reports. Furthermore, family communication and satisfaction and feedback on the web-based program were assessed. Findings: Children's first stage adjustment to parental cancer did not show detrimental patterns. The "lesson learned" in this setting emphasizes the challenge to reach families in need. The web-based program was appreciated as an additional source of information and support in this mostly highly functioning population. Conclusion: While feasibility was shown, it remains unclear how to contact families with lower psychosocial functioning.

Knowledge about and attitude towards fertility preservation in young female cancer patients: a cross-sectional online survey.

Recent advances in cancer therapy have resulted in an increased number of long-term cancer survivors. However, because of their treatment, women might be confronted with impaired fertility. The options of fertility preservation (FP) techniques are increasing. The goal of this study was to assess knowledge about, and attitudes towards, fertility preservation in young female cancer patients. A cross-sectional online survey was conducted including 155 former female cancer patients from English and German speaking countries. The survey consists of questions about attitude towards, and knowledge about, fertility preservation. Results show that knowledge about fertility preservation was limited among participants. Positive attitudes towards fertility preservation significantly outweighed negative attitudes. Knowledge and attitude did not differ according to language or different healthcare systems. Confidence of knowledge was significantly higher in women who underwent any FP procedure compared to those who did not. Greater emphasis should be placed on counselling opportunities, the provision of adequate information and supporting material. A better understanding of these issues will hopefully enhance patients' decision-making about FP options and assist the development of strategies to improve quality of care.

Addressing decisional conflict about fertility preservation: helping young female cancer survivors' family planning decisions.

BACKGROUND: Health professionals are challenged by a growing number of young long-term cancer survivors with their specific needs with regard to family planning. This study aimed at assessing decisional conflict (DC) in young female cancer patients regarding fertility preservation, identifying demographic, fertility and fertility preservation related factors, which may affect DC, and assessing the helpfulness of various decision-supports. METHODS: A retrospective, cross-sectional, web-based survey via an online questionnaire available in three languages with specific items concerning cancer, fertility, fertility preservation and the validated Decisional Conflict Scale targeted at current or former female cancer patients aged 18-45 years, with cancer types or treatment potentially affecting reproductive function. RESULTS: The 155 participating women showed considerable DC, especially with regard to missing information and support. DC was significantly lower in patients when the risk of infertility was discussed with a health professional, when they had undergone any procedure to preserve fertility, and when they had a university education. A longer time interval since cancer diagnosis was associated with higher DC. The most helpful decision-support tools were specialised websites and leaflets. CONCLUSIONS: Young female cancer patients' DC with regard to fertility preservation is very high. Information and support seem to be deficient. More information through standardised information tools might be an effective strategy to lower their DC at the time when treatment decisions need to be taken, and to improve their reproductive health after they have overcome cancer in the future.

Fertility Preservation in Young Female Cancer Patients: Development and Pilot Testing of an Online Decision Aid.

PURPOSE: Impairment of fertility is a common sequela of successful cancer treatment. Therefore, fertility preservation (FP) should be discussed with all young cancer patients. Decisions about FP are challenging. Patients wish more specific support and the first results concerning the helpfulness of decision aids (DA) were promising. Aside from describing the process of development and the content of an online DA in German, the objective of this study was to pilot test users' satisfaction with the DA and its effect on knowledge about FP and decisional conflict (DC). METHODS: In this prospective consecutive study, a control group (n = 20, fertility counseling) was followed by and compared with an intervention group (n = 20, counseling and additional use of the DA, developed by an interdisciplinary team) of recently diagnosed female cancer patients between 18 and 40 years. RESULTS: Nearly all participants who applied the DA considered it helpful for decision-making and recommendable. Knowledge about FP was high with regard to FP techniques women went for. DC was moderate according to the mean score (M = 27.92, standard deviation = 13.27) and only in 20%, the score was above the threshold for high DC. There was no difference between the control and intervention group for knowledge and DC. CONCLUSION: The DA seems to serve as additional and well-accepted support tool in decision-making for patients and professionals. Referral to a reproductive specialist is crucial to warrant comprehensive information. These results need to be confirmed with the current ongoing randomized controlled study.

Decision-making about fertility preservation-qualitative data on young cancer patients' attitudes and needs.

The aim of the study was to get deeper insight into the significance of fertility in cancer patients, their attitude towards fertility preservation (FP), decisional conflicts, and patient's needs in the decision-making process. Focus groups with 12 female cancer survivors were held and revealed that the significance of fertility was high and attitude towards FP positive. Religious and ethical reservations were not negligible. Standardized decision aids were considered helpful. More support is highly in demand and specific tools would be beneficial.