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PURPOSE: The aim was to investigate desire for children, difficulties achieving a pregnancy, and infertility distress among survivors 3 to 7 years after cancer treatment in reproductive age. METHODS: Cancer survivors were identified in national population-based cancer registries. Eligible subjects presented with selected cancer diagnoses between 2003 and 2007 between the ages of 18 to 45. A postal questionnaire including study-specific questions, the Short-Form 36 Health Survey and the Fertility Problem Inventory, was sent to 810 survivors, and 484 participated (60 % response). RESULTS: Most survivors who had a pretreatment desire for children still wanted children 3-7 years after treatment, and this group was characterized by young age and being childless at diagnosis. In addition, a substantial group of survivors (n = 55, 17 %) that did not have a pretreatment desire for children had changed their mind about wanting children after treatment. About a third of the survivors with a desire to have children had experienced difficulties achieving a pregnancy after the cancer treatment, and an unfulfilled desire to have children was associated with worse mental health. Survivors presently facing difficulties achieving a pregnancy reported moderate levels of infertility distress and expressed low interest in using gamete donation. CONCLUSIONS: Health professionals in cancer care need to be aware that patients' plans for future children may change, particularly if they are young and childless. All patients of reproductive age should be provided with adequate information about the impact of cancer treatment on future fertility and fertility preservation.

Objective:To investigate whether longitudinal changes in health-related quality of life (HRQoL) among breast cancer patients vary by prediagnosis occupational status or postdiagnosis changes in wor ...

BACKGROUND: The Internet should be suitable for delivery of interventions targeting young cancer patients. Young people are familiar with the technologies, and this patient group is small and geographically dispersed. Still, only few psycho-educational Web-based interventions are designed for this group. Young cancer patients consider reproductive health, including sexuality, an area of great importance and approximately 50% report sexual problems and fertility-related concerns following cancer treatment. Therefore, we set out to develop a self-help Web-based intervention, Fex-Can, to alleviate such problems. To improve its quality, we decided to involve patients and significant others as research partners. The first 18 months of our collaboration are described in this paper. The intervention will subsequently be tested in a feasibility study followed by a randomized controlled trial. \ud \ud OBJECTIVE: The study aims to describe the development of a Web-based intervention in long-term collaboration with patient research partners (PRPs). \ud \ud METHODS: Ten former cancer patients and two significant others participated in building the Web-based intervention, using a participatory design. The development process is described according to the design step in the holistic framework presented by van Gemert-Pijnen et al and evaluates the PRPs' impact on the content, system, and service quality of the planned intervention. \ud \ud RESULTS: The collaboration between the research group and the PRPs mainly took place in the form of 1-day meetings to develop the key components of the intervention: educational and behavior change content, multimedia (pictures, video vignettes, and audios), interactive online activities (eg, self-monitoring), and partial feedback support (discussion forum, tailored feedback from experts). The PRPs influenced the intervention's content quality in several ways. By repeated feedback on prototypes, the information became more comprehensive, relevant, and understandable. The PRPs gave suggestions concerning the number of exercises and pointed out texts and pictures needing revision (eg, experienced as normative or stereotypical) to increase the persuasiveness of the program. The system quality was improved by PRPs' feedback on design, technical malfunctions, and navigation on the website. Based on feedback about availability of professional support (technical problems and program content), the organization for support was clarified, which increased service quality. The PRPs also influenced the research project on an overall level by suggesting modifications of inclusion criteria for the RCT and by questioning the implementation plan. \ud \ud CONCLUSIONS: With suggestions and continuous feedback from PRPs, it was possible to develop a Web-based intervention with persuasive design, believed to be relevant and attractive for young persons with cancer who have sexual problems or fertility distress. In the next step, the intervention will be tested in a feasibility study, followed by an RCT to test the intervention's effectiveness in reducing sexual problems and fertility distress. \ud \ud TRIAL REGISTRATION: International Standard Randomized Controlled Trial Number (ISRCTN): 36621459; http://www.isrctn.com/ISRCTN36621459 (Archived by WebCite at http://www.webcitation.org/6gFX40F6T).

In a prospective study, we investigated the impact of anti-Mullerian hormone (AMH) changes following ovarian cyst surgery on the probability to achieve pregnancy and live birth. Women of reproductive age (n = 60) were included before surgery for benign ovarian cysts. Serum AMH concentrations were determined pre- and postoperative at 6 and 24 months. Information regarding pregnancy wish and attempts to conceive were obtained by a questionnaire. At the time of inclusion, 45/60 women reported desire of children. At six months, the levels of AMH decreased significantly in the whole group and further reduction was observed at two years (from 2.7 μg/L to 2.0 μg/L to 1.1 μg/L, respectively, p

Objective. To study donors motivation and ambivalence before donation of gametes. Design. Cross-sectional study. Setting. Seven Swedish university hospital clinics. Sample. Of the 220 eligible oocyte donors and 156 eligible sperm donors who were approached, 181 (82%) oocyte donors and 119 (76%) sperm donors agreed to participate. Methods. Gamete donors completed a questionnaire in the clinic prior to the donation. Main outcome measures. Motives and ambivalence towards donation. Results. In general, gamete donors donated for altruistic reasons (95%). A greater percentage of oocyte than sperm donors had a personal experience of biological children, which motivated them to donate (65 vs. 32%). A greater percentage of sperm donors compared with oocyte donors were curious about their own fertility (24 vs. 9%), and they also believed that they were contributing what they regarded as their own good genes to other couples (45 vs. 20%). Prior to donation, potential sperm donors were more ambivalent towards donating than were oocyte donors (39 and 21%, p similar toandlt;similar to 0.001). Conclusions. The motives to donate gametes are mainly altruistic. We conclude that men and women differ in their view towards donating gametes. Sperm donors had a higher degree of ambivalent feelings towards donation than oocyte donors.

Purpose The aim was to investigate male and female cancer survivors' perception of fertility-related information and use of fertility preservation (FP) in connection with cancer treatment during reproductive age. Methods The study sample consisted of cancer survivors diagnosed from 2003 to 2007 identified in population-based registers in Sweden. Inclusion criteria included survivors who were age 18 to 45 years at diagnosis and had lymphoma, acute leukemia, testicular cancer, ovarian cancer, or female breast cancer treated with chemotherapy. Of 810 eligible participants, 484 survivors (60% response rate) completed a postal questionnaire. Results The majority of male participants reported having received information about treatment impact on fertility (80%) and FP (68%), and more than half of the men banked frozen sperm (54%). Among women, less than half (48%) reported that they received information about treatment impact on fertility, and 14% reported that they received information about FP. Only seven women (2%) underwent FP. Predictors for receiving information about treatment impact on fertility were a pretreatment desire to have children (odds ratio [OR], 3.5), male sex (OR, 3.2), and being ≤ 35 years of age at diagnosis (OR, 2.0). Predictors for receiving information about FP included male sex (OR, 14.4), age ≤ 35 at diagnosis (OR, 5.1), and having no children at diagnosis (OR, 2.5). Conclusion Our results show marked sex differences regarding the receipt of fertility-related information and use of FP. There is an urgent need to develop fertility-related information adapted to female patients with cancer to improve their opportunities to participate in informed decisions regarding their treatment and future reproductive ability.

Objective To study the personality characteristics of identifiable sperm donors in a national sample in comparison with the same characteristics of a control group. less thanbrgreater than less thanbrgreater thanDesign Descriptive study. less thanbrgreater than less thanbrgreater thanSetting All clinics (n = 7) performing gamete donation in Sweden. less thanbrgreater than less thanbrgreater thanPopulation All Swedish sperm donors recruited during 2005-08. An age-matched group of Swedish men served as controls. less thanbrgreater than less thanbrgreater thanMethods Standardised questionnaires were used to measure personality. less thanbrgreater than less thanbrgreater thanMain outcome measures Demographics and the Temperament and Character Inventory (TCI). less thanbrgreater than less thanbrgreater thanResults The mean age of the donors was 33.8 +/- 7.8 years (18-56 years). About one-third (36.5%) of the donors had biological children of their own. With regard to personality, significant differences were present on harm avoidance, with lower means for sperm donors (P = 0.002, 95% CI -3.74 to -0.85), and on self-directedness and cooperativeness, with higher means for donors (P = 0.002, 95% CI 0.97-4.19; P = 0.001; 95% CI 0.75-2.95, respectively), compared with controls. This indicates that the donors in general feel less worried and suffer less from uncertainty, shyness and fatigability than controls. They also perceive themselves as being autonomous, with a capacity to take responsibility, to behave in a goal-directed manner, to be resourceful and sel-facceptant, and to behave in a manner guided by meaningful values and goals. Furthermore, they describe themselves as being well integrated in humanity or society, and having a good capacity for identification with and acceptance of other people. less thanbrgreater than less thanbrgreater thanConclusions The screening process at the clinics seems to generate a group of stable, mature and well-integrated donors, and this is a promising result for the future.

This study explored the informational needs of individuals attending genetic counseling for hereditary cancer, using a free-choice and a forced choice method. Prior to the consultation the informational needs of 334 counselees from Sweden and Norway were assessed by the QUOTE-gene (ca) questionnaire and by a study specific forced choice method, using Q-methodology. Questionnaire responses indicated that counselees' major concerns pertained to the need to be taken seriously, to be provided with sufficient risk estimation and medical/genetic information and to be involved in the decision making process. Furthermore, prior to counseling, counselees noted that the counselors' consideration and skillfulness were also extremely important. Analysis of the Q-sorting results revealed that counselees' needs could be assigned to one of five groups: the "need for facts; caring communication and medical information; information and support in communicating the genetic information to others; practical care and practical/medical information". Particularly noteworthy, counselees with varying backgrounds characteristics prioritized different needs. Cancer genetic counselees probably have different needs due to their medical and demographic background when attending genetic counseling. Addressing counselees' specific concerns more sufficiently and thereby increasing the overall effectiveness of the counseling session requires increased insight into individual needs, by for instance, utilizing screening methods such as QUOTE-gene (ca) prior to the counseling session.

My, your and our needs for safety and security : relatives’ reflections on using information and communication technology in dementia care

Objective To study the personality characteristics of identifiable oocyte donors in a national sample in comparison with normal values. Design Descriptive study. Setting All Swedish donation programmes. Sample In total, 181 women out of 221 donors recruited during 2005-2008. Methods Standardised questionnaires were used to measure personality characteristics. Main outcome measure Demographics, temperament and character inventory (TCI). Results The majority (69%) of the donors had biological children of their own. The results from the TCI indicate that the oocyte donors were all within the normal range of character. With regard to personality, a significant difference was evident between the two groups: oocyte donors showed lower means for harm avoidance and higher scores for persistence than the controls. This indicates that the donors felt less worried, and displayed a lower level of fear of uncertainty, shyness and fatiguability, and a higher level of persistence, than the controls. In the present sample, 29 (16%) of the donors were so-called 'known donors', that is the recipient couples and the donors were known to each other. 'Known donors' displayed a mature and stable character. Conclusion We found that the women who had been accepted for inclusion in this nationwide oocyte donor programme were all well adjusted and mature.

Aim The objective was to compare sexual function, sexual experience and quality of partner relationship by gender in a cohort of long-term survivors of childhood cancer with a sample from the general population. Methods A 30-item self-reported postal questionnaire was completed by a cohort of 224 (64%) long-term survivors of childhood cancer and 283 (51%) randomly selected persons from the general population. Results Male survivors more often reported periods of low sexual interest ( p = 0.019), more frequently reported low sexual satisfaction ( p = 0.015), less frequently reported feeling sexually attractive ( p = 0.020) and reported a lower total number of sexual partners ( p = 0.031) than males in the comparison group did. Males diagnosed with a central nervous system (CNS) tumour more frequently reported sexual arousal problems ( p = 0.003), low sexual satisfaction ( p = 0.021) and total number of sexual partners ( p = 0.012) than did males with other diagnoses. There were no statistically significant differences regarding sexual function between the female survivors and the females in the comparison group. Conclusion : The results indicate that cancer disease and treatment have more impact on sexual function of male survivors than on the sexual function of female survivors. Amongst the survivors, males diagnosed with CNS tumours were shown to be the most vulnerable group. Assessment of sexual function is recommended to be included in regular follow-ups after childhood cancer.

This paper is a report of a study of situational (nurse-patient agreement), personal and occupational factors of potential importance to oncology nurses' satisfaction with care provided and general work satisfaction.Nurses have a general tendency to attribute to patients with cancer more problems and suffering than patients themselves report. However, little is known about whether dis/agreement between oncology nurses and patients with cancer concerning perceptions of patients' situation is of importance to nurses' satisfaction with their work.The study had a comparative and prospective design. Data were collected in 2005 using self-administrated questionnaires with 81 consecutively recruited nurse-patient pairs. Data were analysed with non-parametric tests (for comparison between subgroups) and with multiple regression analyses (for identifying predictors).Initial nurse-patient agreement concerning patients' emotional distress, coping resources and quality of life did not appear to be important to nurses' subsequent satisfaction with the care directed at a specific patient. However, higher satisfaction with care provided as well as general work satisfaction was reported by nurses with more experience of cancer care and with a lower workload.To improve oncology nurses' opportunities to provide high quality cancer care, novice nurses and advanced beginners in particular should receive support and nurses' working conditions must be improved. Further research is needed to examine whether there are other aspects of the nurse-patient relationship that contribute to oncology nurses' satisfaction with the care provided to specific patients.

To investigate nurses' planning and implementation of individualized patient care in relation to patients' emotional distress as assessed by nurses and whether nurses and patients perceived the implemented care in a similar manner.Prospective, comparative.Five oncologic-hematologic wards in Sweden.90 individual nurse-patient pairs were recruited and 81 were intact after three consecutive days. Each pair consisted of a patient with cancer and a nurse responsible for that patient's care.Nurse-patient pairs were followed using questionnaires. Outcome measures were nurses' identification of patients' emotional distress, care planning, and nurse-patient ratings of implemented care.Patients' emotional distress and nurses' implemented care.Nurses identified a variety of emotional issues among patients and planned individual nursing interventions. Nurse and patient perceptions of implemented care demonstrated weak correlations for individually planned interventions and nurses' general caring behavior. With one exception, nurse self-reports did not indicate any differences in nurses' caring behavior directed to more and less distressed patients. Nurses reported providing comfort more frequently to patients with high levels of emotional distress, but this was not substantiated in patients' ratings.Nurses showed an intention to provide individualized care. However, with one exception, nurses did not report providing more care to patients with cancer with high levels of emotional distress than to less distressed patients.To ensure individualized care, nurses in cancer care should closely validate the accuracy of their interpretation of patients' needs and their planning of care in collaboration with the patients.

The main aims were to: explore whether there is a relation between doctors’ ability to identify patients’ worry and wish for information and self-efficacy with regard to communicating with patients about difficult matters; describe which cues doctors consider when estimating patients’ worry and wish for information, and investigate whether there is a relation between patients’ satisfaction with doctors’ care and patients’ psychosocial function. Eleven doctors and 69 patients (of which 36 patients participated in the longitudinal study) with carcinoid tumours participated. Doctors’ self-efficacy, and ability to identify patients’ worry/wish for information were investigated at patients’ first admission. Doctors were interviewed about which cues they considered when estimating patients worry/wish for information. Patients’ satisfaction with care (CASC SF 4.0) and psychosocial function (EORTC QLQ-C30, HADS) were measured longitudinally, during the first year after diagnosis. Doctors reported higher self-efficacy when showing good ability to identify patients’ wish for information, than when showing less good ability, overestimated patients’ worry and underestimated patients’ wish for information. Doctors considered patients’ verbal behaviour and body language together with knowledge and experience when estimating patients worry and wish for information. Patients who met doctors showing good ability to identify their wish for information, reported a higher cognitive function than patients who met doctors showing less good ability. At all assessments patients expressed high satisfaction with doctor’ care and patients’ satisfaction did not change over time. Patients’ satisfaction with doctors’ care were related to their psychosocial function shortly after the first three admissions to specialist care. Patients with carcinoid tumours in some respects reported a worse HRQoL than the general Swedish population. Fatigue, diarrhoea, limited possibilities to work/pursue daily activities, and worry that the illness will get worse were among the most prevalent, and worst, aspects of disease- and treatment related distress.

Purpose. The aim of the present randomized intervention study was to investigate the effect of receiving extended cancer genetic information on counselees' knowledge, risk perception, information sharing and satisfaction with the service. Methods. In total, 147 counselees, affected by cancer and/or a family history of cancer, were randomized to extended or standard information. The levels of counselees' knowledge and personal risk estimations were measured at four time points. In addition, counselees' satisfaction with the counseling and sharing of the information to at-risk relatives was assessed. The intervention included meeting a specialist nurse, learning the breaking bad news method, receiving written material and video-taped counseling sessions. Results. A significant increase in the level of knowledge in participants in the "breast cancer group" regardless of the randomization was observed over time. The correct estimation of personal risk increased significantly in both groups after two weeks, but declined at the eight month follow-up. Most of the participants had informed at-risk relatives about their visit at the cancer genetic clinic. The majority of respondents in both groups were highly satisfied with the counseling. The only observed effects of the intervention were that counselees in the intervention group were significantly more satisfied with the content of the given information and with the way of informing relatives. Conclusion. Apparently, the current genetic counseling is managed properly and extended information does not seem necessary in all cases. However, some counselees need additional sessions.

Assisted reproductive technology (ART) legislation in Sweden has undergone a gradual transformation from being fairly restrictive when first introduced to becoming more permissive in recent years. Regarding gamete donation, Sweden became the first country to pass legislation about disclosure by establishing a child's right to find out the identity of the gamete donor once the child has reached maturity. Our aim was to investigate attitudes towards gamete donation among Swedish gynaecologists and obstetricians.A questionnaire was mailed to all gynaecologists and obstetricians listed from a commercial register of all working in Sweden. Among 1230 eligible gynaecologists/obstetricians, 854 (69%) answered the questionnaire.In general, the majority of Swedish gynaecologists/obstetricians had positive attitudes towards gamete donation. Although a majority advocated openness regarding informing the child that he or she was conceived by making use of gamete donation, approximately 40% opposed allowing the child to receive any information about the donor when the child has reached maturity. Even though Swedish legislation has allowed sperm donation to lesbian couples since July 2005, one-third of the gynaecologists/obstetricians opposed donation to lesbians.The results indicate that the gynaecologists'/obstetricians' negative attitudes towards disclosure may influence patients' ability to discuss their thoughts and feelings about donation. This may also have a negative impact on donor recruitment as well as on the extent of methods made accessible within ART.

The aim was to describe the patient attitudes, behaviours, and other factors, considered by doctors when estimating cancer patients' worry about how the disease may develop and the desire for information about the disease and its treatment. Data was gathered through semi-structured interviews with 19 doctors regarding 29 patients within endocrine oncology and haematology care, and the data were analysed by content analysis. The doctors considered the patients' verbal expressions, verbal behaviours, questions, body language, and facial expressions together with their own professional knowledge and experience, when estimating the patients' worry and desire for information. The doctors also considered contextual factors, patients' demographical factors, and medical situation when estimating the patients' worry, and also when estimating the patients' desire for information. The findings illustrate that estimating patients' worry and desire for information is a multifaceted and complex task, and that doctors consider not only the patients' verbal and nonverbal cues, but also factors, such as their own professional knowledge and experience, contextual factors, and patients' demographical variables. The findings should be communicated to doctors who meet cancer patients in medical consultations in order to illuminate the complexity of the medical consultation. The awareness of potentially important patient cues and other factors may aid doctors in their efforts to gain insight about their patients' emotions and informational needs.

Objective To investigate changes in serum anti-Mullerian hormone (AMH) concentrations following ovarian cyst surgery, and predictors of these changes. Design Prospective cohort study with follow up at 3 and 6 months. Setting University hospital. Population Women of reproductive age scheduled for ovarian cyst surgery. Methods Women were recruited between March 2011 and March 2012 (n = 75). Serum AMH concentrations were measured preoperatively and at 3 and 6 months postoperatively. Main outcome measures Changes in AMH after surgery and predictors for these changes. Results After surgery, median AMH levels decreased significantly from 2.7 μg/L (0.2–16.9) to 1.6 μg/L (0.2–9.9) at 3 months and were still low, 1.6 μg/L (0.2–8.3) at 6 months (both p

Background: Oocyte donation has been associated to gestational diabetes, hypertensive disorders, placental abnormalities, preterm delivery and increased rate of caesarean delivery while simultaneously being characterized by high rates of primiparity, advanced maternal age and multiple gestation constituting the individual risk of mode of conception difficult to assess. This study aims to explore obstetrical outcomes among relatively young women with optimal health status conceiving singletons with donated versus autologous oocytes (via IVF and spontaneously). Methods: National retrospective cohort case study involving 76 women conceiving with donated oocytes, 150 nulliparous women without infertility conceiving spontaneously and 63 women conceiving after non-donor IVF. Data on obstetric outcomes were retrieved from the National Birth Medical Register and the medical records of oocyte recipients from the treating University Hospitals of Sweden. Demographic and logistic regression analysis were performed to examine the association of mode of conception and obstetric outcomes. Results: Women conceiving with donated oocytes (OD) had a higher risk of hypertensive disorders [adjusted Odds Ratio (aOR) 2.84, 95 % CI (1.04-7.81)], oligohydramnios [aOR 12.74, 95 % CI (1.24-130.49)], postpartum hemorrhage [aOR 7.11, 95 % CI (2.02-24.97)] and retained placenta [aOR 6.71, 95 % CI (1.58-28.40)] when compared to women who conceived spontaneously, after adjusting for relevant covariates. Similar trends, though not statistically significant, were noted when comparing OD pregnant women to women who had undergone non-donor IVF. Caesarean delivery [aOR 2.95, 95 % CI (1.52-5.71); aOR 5.20, 95 % CI (2.21-12.22)] and induction of labor [aOR 3.00, 95 % CI (1.39-6.44); aOR 2.80, 95 % CI (1.10-7.08)] occurred more frequently in the OD group, compared to the group conceiving spontaneously and through IVF respectively. No differences in gestational length were noted between the groups. With regard to the indication of OD treatment, higher intervention was observed in women with diminished ovarian reserve but the risk for hypertensive disorders did not differ after adjustment. Conclusion: The selection process of recipients for medically indicated oocyte donation treatment in Sweden seems to be effective in excluding women with severe comorbidities. Nevertheless, oocyte recipients-despite being relatively young and of optimal health status-need careful counseling preconceptionally and closer monitoring prenatally for the development of hypertensive disorders. Funding Agencies|Family Planning Fond in Uppsala; Swedish Research Council for Health, Working Life and Welfare; Merck Serono

Background: Postponing childbirth is becoming increasingly common in Western countries, especially among women with higher education. Objective: The aim of the present study was to investigate female and male postgraduate students' attitudes toward parenthood, their intentions to have children, perceived obstacles to having or raising children during postgraduate studies, and their awareness of fertility issues. Methods: A 52-question survey was mailed to randomly selected postgraduate students attending a Swedish university. The questionnaire was developed based on earlier research by, and the professional experience of, the authors. Three pilot studies were conducted to test the questionnaire's reliability and validity. The t, x2, and Mann-Whitney U tests were used, as appropriate, to analyze responses. Results: Two hundred female and 200 male postgraduate students aged ≤40 years received questionnaires. The response rate was 71% (n = 141) among women and 58% (n = 116) among men. Most childless respondents had positive attitudes toward parenthood and wanted to have 2 or 3 children, and a majority of women wanted to have their last child after age 35. Compared with men, women were more pessimistic about the effects of parenthood on their postgraduate studies, and perceived more problems related to balancing work and family life. One of 4 respondents overestimated a woman's ability to become pregnant between 35 and 40 years of age, and about half had overly optimistic perceptions of the chances to have a baby by means of in vitro fertilization. Conclusions: Most postgraduate students wanted to have children in the future. More women than men perceived that having children while completing postgraduate studies was or would be difficult, and that parenthood would negatively affect their status in the labor market. Because many female postgraduate students intend to have children at an age when female fecundity is decreased, information on fertility issues would help them make informed decisions regarding family planning.

The main aims were to investigate emotional reactions during in vitro fertilization (IVF) treatment among women and men, attitudes of IVF couples towards cryopreserved embryos and public attitudes towards various aspects of oocyte donation in Sweden. Assessments of emotional, physical and social reactions were made on a daily reaction scale and attitudes on the basis of study-specific questionnaires. Both women and men experienced the stages of oocyte retrieval and embryo transfer, as well as the luteal phase, as being particularly stressful and there was a similarity in the type of reaction pattern. Presence of supernumerary embryos for cryopreservation increased the women’s optimism, but did not seem to reduce their level of distress on the day of embryo transfer. One-third of IVF couples chose not to use their cryopreserved embryos. The main reasons among the respondents concerned family planning and too short a legally allowed time of embryo storage. There was strong support for oocyte donation among a subset of the Swedish population. Women were more positive than men towards oocyte donation and to disclosure of the origin to offspring. Factors that might increase the likelihood of women becoming oocyte donors were talking to women with experience of donating oocytes, proximity to the clinic, accessibility of counselling and having children of their own. These results indicate that different approaches to psychological care for women and men may not be warranted during IVF treatment. Contact should be maintained during the cryopreservation period in order to adress the couple’s questions and concerns about the embryos. To increase the donor pool, IVF clinics could provide information about donation to potential donors through the Internet and through experienced donors. The information to donors and recipient couples about different consequences of donation seems to be of great importance.

The main aims of this study were to investigate the extent to which women with recently diagnosed primary breast cancer (N = 29) and matched control subjects without cancer (N = 29) differ in perceived attainment and importance of life values and to study prospectively life value ratings during 1 year in a large group of recent attendees at mammography screening (N = 706). Life values were assessed by a study-specific version of a life value questionnaire, including ratings of the perceived attainment and importance of seven life value dimensions. Women with a recent diagnosis of primary breast cancer were found to attribute significantly more importance to positive relations than healthy controls. No other differences between these groups were found regarding the attainment or importance of life values. Perceptions of life values were found to vary as a function of age, marital or cohabitation status, and parenthood, and to be stable over a 9-month period in screening attendees. The implications of the current findings for the understanding of women's psychological adaptation to breast cancer are discussed.

The main aim of this study was to investigate whether women's life values change with a breast cancer diagnosis. In addition, associations between life values and anxiety/depression ratings were investigated. Life value changes were prospectively studied in 517 women recalled for further examination after attending mammographic screening, 38 of whom were diagnosed with primary breast cancer. Life values were assessed by a study-specific version of a life value questionnaire, including ratings of the perceived attainment and importance of seven life value dimensions. Three months after being recalled, women diagnosed with primary breast cancer reported a reduction of the attainment and the importance of Health. In addition, these women reported changes in the perceived importance of Responsibility and Involvement. High levels of anxiety and depression in particular were associated with large discrepancies between attainment and importance for some life values. This suggests that changes in the perceived importance of some life values may constitute one part of women's psychological adaptation to a breast cancer diagnosis.

Study question What are the levels of awareness regarding female fertility and the intentions and attitudes towards parenthood among Chinese university students in Hong Kong compared with their counterparts in the West? Summary answer Chinese university students in Hong Kong were similarly over-optimistic about the age-related fertility decline, although they were less inclined to have children and undergo fertility treatment compared with their Western counterparts. What is known already Past studies of highly educated young adults in Europe and the USA have found that they are not sufficiently aware of the age-related decline in female fertility, and falsely believe that advanced reproductive treatments such as IVF will overcome fertility problems associated with age. Little is known about the perceptions of Chinese students in Hong Kong, a modernized Chinese city where the fertility rate is among the lowest in the world. Study design, size, duration An online cross-sectional survey of Chinese university students in Hong Kong was conducted in 2013. Results were compared with two similar studies in Sweden and the USA. Participants/materials, setting, methods A total of 367 university students in Hong Kong (275 female, 92 male; mean age 23) responded to an e-mail invitation to participate in an online survey. Intentions and attitudes towards parenthood and awareness regarding female fertility were assessed using the Swedish Fertility Awareness Questionnaire. Main results and the role of chance Like their Western counterparts, a large proportion of Chinese university students underestimated the age-related fertility decline (92%) and overestimated the fertility treatment success rate (66%). However, they were less inclined to have children, were more aware of and less concerned with infertility and were less motivated to seek solutions in the event of a fertility problem. These comparisons were significant at P Limitations, reasons for caution Self-selection bias was inevitable in the questionnaire survey, and the anonymous nature of the survey did not permit the collection of characteristics of non-responders. International comparisons warrant caution because the Hong Kong sample was older than the US sample (mean age 20), but not older than the Sweden sample (mean age 24). Wider implication of findings While this study was consistent with past Western studies on the lack of fertility awareness among highly educated young people, the findings reveal significant cultural differences in family planning and responses to infertility between Asia and the West.

Background: More and more lesbian couples are planning parenthood through donor insemination and IVF and the number of planned lesbian families is growing in Sweden and other western countries. Research has shown that lesbian couples report as much overall satisfaction in their relationships as do heterosexual couples. However, although parenthood is highly desired, many parents are unaware of the demands of parenthood and the strain on their relationship that the arrival of the baby might bring. The aim of this study was to compare lesbian and heterosexual couples? perceptions of relationship satisfaction at a three-year follow up after assisted reproduction. Methods: The present study is a part of the Swedish study on gamete donation, a prospective longitudinal cohort study. The present study constitutes a three-year follow up assessment of lesbian and heterosexual couples after assisted reproduction. Participants requesting assisted reproduction at all fertility clinics performing gamete donation in Sweden, were recruited consecutively during 2005? 2008. A total of 114 lesbian women (57 treated women and 57 partners) and 126 heterosexual women and men (63 women and 63 men) participated. Participants responded to the ENRICH inventory at two time points during 2005? 2011; at the commencement of treatment (time point 1) and about three years after treatment termination (time point 3). To evaluate the bivariate relationships between the groups (heterosexual and lesbian) and socio-demographic factors Pearsons Chi- square test was used. Kolmogorov-Smirnov test was used for testing of normality, Mann? Whitney U-test to examine differences in ENRICH between the groups and paired samples t-test to examine scores over time. Results: Lesbian couples reported higher relationship satisfaction than heterosexual couples, however the heterosexual couples satisfaction with relationship quality was not low. Both lesbian and heterosexual couples would be classified accordingly to ENRICH-typology as vitalized or harmonious couples. Conclusions: At a follow-up after assisted reproduction with donated sperm, lesbian couples reported stable relationships and a high satisfaction with their relationships, even when treatment was unsuccessful. Funding Agencies|Merck Serono; Uppsala/rebro Regional Research Council; Medical Research council of Southeast Sweden; Swedish Research Council for Health, Working Life and Welfare; Marianne and Marcus Wallenberg Foundation

Objectives: To investigate the effects of using tracking technology on independent outdoor activities and psychological well-being in 3 persons with dementia (PwDs) and their spouses. Methods: Three experimental single-case studies with an A1B1A2B2 design. The intervention entailed access to a passive positioning alarm and technical support. Continual daily measures of independent outdoor activities among PwDs’ and spouses’ worries about these activities were made during all phases. Results: Access to a tracking technology consistently increased the independent outdoor activities of 2 PwDs. One of the spouses consistently reported decreased worry during B phases, another’s worry decreased only in B2, and the third showed little variability in worrying across all phases. Conclusion: Tracking technology may support PwDs to engage in independent outdoor activities and decrease spouses’ worries; however, randomized controlled group studies are needed to investigate whether these results can be replicated on a group level.

To compare sickness absence and disability pension in a population-based cohort of women with breast cancer (n = 463) from 1 year pre-diagnosis until 3 years post-diagnosis with a matched control group (n = 2310), and to investigate predictors of sickness absence during the 2nd and 3rd year post-diagnosis.Following breast cancer, the proportion of disease-free women with sickness absence decreased post-diagnosis (1st-3rd year; 78%-31%-19%), but did not reach the pre-diagnostic level (14%; P0.05). Post-diagnosis, patients were more likely than controls to be sickness absent (1st-3rd year; P0.001). No between-group differences were observed for disability pension post-diagnosis (P0.05). Among patients, chemotherapy, baseline fatigue and pre-diagnosis sick days predicted sickness absence during the 2nd, 3rd, and 2nd and 3rd year post-diagnosis, respectively (P0.05).Breast cancer is associated with increased sickness absence 3 years post-diagnosis. In a clinical setting, prevention and treatment of side effects are important in reducing long-term consequences.

Objective To investigate opinions on the acceptable number of donation offspring in a national cohort of oocyte and sperm donors. Design A prospective follow-up study on a national cohort of gamete donors. Setting Sweden. Methods Study-specific questionnaire. Main outcome measures Opinion on the acceptable number of offspring from one donor. Results About half of both oocyte and sperm donors expressed an opinion that the number of offspring from one donor should be limited to between one and 10, and many donors reported having no firm opinion. When controlling for age, educational level, marital status and biological children, oocyte donors were four times more likely than sperm donors to support an upper limit of five offspring. For many sperm and oocyte donors the number of offspring resulting from their donations was unknown (43.2% oocyte, 47.1% sperm). Conclusion Oocyte donors have more restrictive opinions compared with sperm donors on the acceptable number of offspring from one donor. Donors perform a very humanitarian and societal act when donating their gametes. In the ambition to have safe and trustworthy clinics we need to have well known regulations to be able to recruit donors in the future.

STUDY QUESTION What do adolescent and young adult survivors of childhood cancer think about the risk of being infertile?\ud \ud SUMMARY ANSWER The potential infertility, as well as the experience of having had cancer, affects well-being, intimate relationships and the desire to have children in the future.\ud \ud WHAT IS KNOWN ALREADY Many childhood cancer survivors want to have children and worry about possible infertility.\ud \ud STUDY DESIGN, SIZE, DURATION For this qualitative study with a cross-sectional design, data were collected through 39 online focus group discussions during 2013.\ud \ud PARTICIPANTS/MATERIALS, SETTING, METHODS Cancer survivors previously treated for selected diagnoses were identified from The Swedish Childhood Cancer Register (16–24 years old at inclusion, ≥5 years after diagnosis) and approached regarding study participation. Online focus group discussions of mixed sex (n = 133) were performed on a chat platform in real time. Texts from the group discussions were analysed using qualitative content analysis.\ud \ud MAIN RESULTS AND THE ROLE OF CHANCE The analysis resulted in the main category Is it possible to have a baby? including five generic categories: Risk of infertility affects well-being, Dealing with possible infertility, Disclosure of possible infertility is a challenge, Issues related to heredity and Parenthood may be affected. The risk of infertility was described as having a negative impact on well-being and intimate relationships. Furthermore, the participants described hesitation about becoming a parent due to perceived or anticipated physical and psychological consequences of having had cancer.\ud \ud LIMITATIONS, REASONS FOR CAUTION Given the sensitive topic of the study, the response rate (36%) is considered acceptable. The sample included participants who varied with regard to received fertility-related information, current fertility status and concerns related to the risk of being infertile.\ud \ud WIDER IMPLICATIONS OF THE FINDINGS The results may be transferred to similar contexts with other groups of patients of childbearing age and a risk of impaired fertility due to disease. The findings imply that achieving parenthood, whether or not with biological children, is an area that needs to be addressed by health care services.\ud \ud STUDY FUNDING/COMPETING INTEREST(S) The study was financially supported by The Cancer Research Foundations of Radiumhemmet, The Swedish Childhood Cancer Foundation and the Doctoral School in Health Care Science, Karolinska Institutet. The authors report no conflicts of interest.

AIM: To study parenting stress in lesbian parents and to compare that stress with heterosexual parents following in vitro fertilisation (IVF) or spontaneous pregnancies.\ud \ud METHODS: This survey took place during 2005-2008 and was part of the Swedish multicentre study on gamete donation. It comprised 131 lesbian parents, 83 heterosexual IVF parents, who used their own gametes, and 118 spontaneous pregnancy parents. The participants responded to the questionnaire when the child was between 12 and 36-months-old and parenting stress was measured by the Swedish Parenting Stress Questionnaire (SPSQ).\ud \ud RESULTS: Lesbian parents experienced less parenting stress than heterosexual IVF parents when it came to the General Parenting Stress measure (p = 0.001) and the subareas of Incompetence (p < 0.001), Social Isolation (p = 0.033) and Role Restriction (p = 0.004). They also experienced less parenting stress than heterosexual spontaneous pregnancy couples, according to the Social Isolation subarea (p = 0.003). Birth mothers experienced higher stress than co-mothers and fathers, according to the Role Restriction measure (p = 0.041).\ud \ud CONCLUSION: These are reassuring findings, considering the known challenges that lesbian families face in establishing their parental roles and, in particular, the challenges related to the lack of recognition of the co-mother.

Objective To investigate the attitudes and preferences regarding future contact with donation offspring among identity-release donors of oocytes or sperm. Design Longitudinal cohort study. Setting University-based fertility clinics in Sweden. Patient(s) A total of 210 women and men were questioned 5–8 years after their donation of oocytes or sperm. Intervention(s) Questionnaires given to donors prior to their donation and 5–8 years after donation. Main Outcome Measure(s) Donors' attitudes and preferences regarding future contact with their donation offspring. Result(s) A majority of identity-release oocyte (65%) and sperm (70%) donors were positive toward being contacted by an offspring of mature age. More than half wanted to be notified by the clinic when an offspring requested information about them, but about a third were negative toward receiving this information. One in four reported a need for counseling regarding future contact with an offspring. Conclusion(s) Several years after donation, a majority of identity-release oocyte and sperm donors show positive attitudes toward future contact with their offspring. Donors appear to have different preferences for information and support regarding such contact. Fertility clinics and health-care services should provide counseling regarding contact with an offspring to the donors who express a need for this.

STUDY QUESTION: Is there a difference in fertility between heterosexual women and lesbians undergoing sperm donation? SUMMARY ANSWER: Women undergoing treatment with donated sperm are equally fertile regardless of sexual orientation. WHAT IS KNOWN ALREADY: Lesbians have an increased prevalence of smoking, obesity, sexually transmitted diseases and, possibly, polycystic ovary syndrome, all factors known to affect fertility. Previous studies on sperm donation inseminations (D-IUI) show conflicting results regarding pregnancy outcome. STUDY DESIGN, SIZE, DURATION: This is a national study of 171 lesbians and 124 heterosexual women undergoing sperm donation both as D-IUI (lesbian n = 438, heterosexual n = 298) and as embryo transfers (ET) after IVF with donated sperm (lesbians n = 225, heterosexuals n = 230) during 2005-2010. PARTICIPANTS/MATERIALS, SETTING, METHODS: All clinics in Sweden offering sperm donation recruited patients. Differences in patients' medical history, treatment results and number of treatments to live birth were analyzed using independent samples t-test, Pearson's χ(2) test or Fisher's exact probability test. MAIN RESULTS AND THE ROLE OF CHANCE: 71.8% of heterosexuals and 69.0% of lesbians had a child after treatment. The mean number of treatments was 4.2 for heterosexual women and 3.9 for lesbians. The total live birth rate, regardless of treatment type, was 19.7% for heterosexuals and 19.5% for lesbians. For D-IUI, the live birth rate was 12.8% for heterosexuals and 16.0% for lesbians and the live birth rate for all IVF embryo transfers (fresh and thawed cycles) was 28.7% for heterosexuals and 26.2% for lesbians. There were no differences in live birth rate between the groups for each of the different types of insemination stimulations (natural cycle; clomiphene citrate; FSH; clomiphene citrate and FSH combined). Nor was there a difference in live birth rate between the groups for either fresh or thawed embryo transfer. There was no difference between the proportions of women in either group or the number of treatments needed to achieve a live birth. Heterosexuals had a higher prevalence of smokers (9.2%), uterine polyps (7.2%) or previous children (11.3%) than lesbians (smokers 2.8%, P = 0.03; polyps 1.8%, P = 0.03; child 2.5%, P = 0.003). LIMITATIONS, REASONS FOR CAUTION: This study is limited to women living in stable relationships undergoing treatment with donated sperm in a clinical setting and may not apply to single women or those undergoing home inseminations. WIDER IMPLICATIONS OF THE FINDINGS: These results may influence healthcare policy decisions as well as increase the quality of clinical care and medical knowledge of healthcare professionals. The data also have important implications for individuals regarding screening, infertility diagnostic procedures and treatment types offered to heterosexuals and lesbians seeking pregnancy through sperm donation. STUDY FUNDING/COMPETING INTEREST(S): Funding was granted by the Stiftelsen Familjeplaneringsfonden i Uppsala; the Swedish Research Council for Health, Working Life and Welfare; and the Marianne and Marcus Wallenberg Foundation. The authors report no conflicts of interest.

Background: The long-term effect of treatment with donated oocytes on women’s and men’s perception of their relationship has been little studied. Thus the aim of this study was to analyse satisfaction with relationships in couples at the time of acceptance for treatment and 2–5 years after treatment with donated gametes and to compare them with IVF couples treated with their own gametes. Method: A prospective follow-up study in which data were collected twice on two groups; cohabitating couples receiving oocyte donation and cohabitating IVF couples using their own gametes. A standardised instrument, the ENRICH inventory, was used to gain information about the couples’ subjective experience of their relationships. Results: At acceptance for treatment the couples in the two groups assessed their relationships as being very solid on all dimensions and that the women receiving treatment with oocyte showed a higher satisfaction compared to women treated with own gametes. For couples that did have a child, the group of women who had been through the oocyte donating program reported a better quality of their relationship than women in the control group. There were no significant differences in perceived relationship quality between men in the different groups, whether they had a child or not. Conclusions: From a long-term perspective couples using oocyte donation treatment have a balanced and solid view of their relationship and treatment, having children or not after treatment did not affect the nature of the relationships.

BACKGROUND: Long-term follow-up on relationship quality in couples who use sperm donation is scarce. Therefore, this study aimed to analyse changes over time in satisfaction with relationship in heterosexual couples who were scheduled for treatment with sperm donation and IVF couples treated with their own gametes and to compare the two groups undergoing different treatment for infertility. METHOD: A prospective follow-up study in which data were collected twice on two groups; couples receiving sperm donation and IVF couples using their own gametes. The ENRICH instrument was used to gain information about the individuals' subjective experience of their relationship at the time of acceptance for treatment and again 2-5 years later. RESULTS: At the time of acceptance for treatment the men and women in the two groups assessed their relationships as being very solid on all dimensions and that there were no differences between the two groups. At the second assessment there was a decline in the satisfaction scores on the dimensions "Children and parenting" and "Egalitarian", while an increase in scores was observed on "Conception of life" and "Conflict resolution" both for men and woman and also for the two groups. For the couples that had a successful treatment and gave birth to a child/children there was a decrease in satisfaction of the relation in the sperm donation group as well as in the group of couples having IVF with own gametes. CONCLUSION: In conclusion, the overall quality of relationship is stable in couples receiving donated sperm and does not differ from couples undergoing IVF-treatment with own gametes. Funding Agencies|Medical Research Council of Southeast Sweden; Swedish Research Council for Health, Working Life and Welfare

The aim was to investigate the psychological consequences of further investigation after breast cancer screening. Study participants include 509 women (61%) recalled due to suspicious findings on screening mammograms, and a matched control group of 285 women (68%) with normal mammograms. Psychological distress was prospectively assessed with the Hospital Anxiety and Depression Scale (HADS). 46% of the women reported borderline or clinically significant anxiety prior to the recall visit. A few days after the visit, anxiety and depression had decreased significantly (P

This paper reviews patient and staff perceptions of cancer patients' psychological concerns and needs. An extensive literature search resulted in a total of 22 studies. Six of these concern staff ratings of hypothetical 'average' patients, and the main findings are that staff and patients are in relative agreement about the overall spectrum of concerns relevant to cancer patients, but less so regarding which concerns are of most importance to patients. Sixteen studies compare patient ratings with staff ratings of individual patients. The overall pattern of results indicates that staff tend to overestimate patient anxiety and emotional distress and show limited ability adequately to assess patient distress in terms of rank. Staff were able correctly to detect a majority of anxiety 'cases', while the identification of depression was less accurate. High detection rates for anxiety were obtained partly at the expense of staff also presuming anxiety in many non-distressed patients. Generally, there was better patient-staff agreement on the absence than the presence of patient anxiety and depression. Many studies were found to have serious methodological deficiencies and there is no clear evidence that patient-staff agreement is markedly better in studies fulfilling important methodological criteria. Several explanations of patient-staff discrepancies are discussed. Future research should be aimed at critically testing possible reasons for patient-staff disagreement and at investigating the consequences of such discrepancies.

Background. There is a need to establish clinically relevant thresholds (anchors) for identifi cation of differences in healthrelated quality of life (HRQoL) and thereby provide stronger evidence regarding the HRQoL of childhood cancer survivors. Aim. To investigate HRQoL in childhood cancer survivors with a standardised instrument and to establish thresholds for clinically signifi cant differences by using qualitative interviews as anchors. An additional aim was to investigate survivors ’ HRQoL in relation to an age-matched comparison group without cancer experience. Material and methods. Self-rated HRQoL (KIDSCREEN-27) was assessed in a national cohort of survivors (n � 63, aged 12 ‐ 22) and a comparison group (n � 257, aged 11 ‐ 23). Findings from qualitative interview data were also used (n � 61); three subgroups ( “ Feeling like anyone else ” ; “ Feeling almost like others ” ; “ Feeling different ” ) were identifi ed based on survivors own perception of infl uence on daily life. Effect size calculations based on means from the KIDSCREEN-27 dimensions were performed using the subgroups as anchors to indicate clinical importance. Furthermore, standard multiple regression analyses were performed. Results. Effect sizes between the subgroups “ Feeling like anyone else ” and “ Feeling almost like others ” and the group “ Feeling different ” were large for all dimensions (1.04 ‐ 2.07). The multiple regression models showed that being a survivor was signifi cantly associated with one of the dimensions, School Environment, where survivors scored higher HRQoL. Furthermore, female sex and older age (17 ‐ 23 years) signifi cantly contributed to lower self-rated HRQoL. Conclusion. In clinical practice the KIDSCREEN-27 could be a useful screening tool to identify survivors of childhood cancer in need of extra support, using KIDSCREEN dimension mean values of 45 or less as thresholds. Larger scale studies are recommended to identify and test thresholds with regard to different age groups and time since diagnosis. The survival rates for children treated for childhood cancer have increased over the years and today the survival probability at 10 years is approximately 75% [1]. Results from large cohort studies show that longterm survivors are at high risk of developing serious health problems [2]. The focus of the present study is on health-related quality of life (HRQoL) where results from previous studies indicate ratings among survivors in parity or better compared to comparison groups [3 ‐ 5]. To our knowledge, there is a lack of scientifi c reports that have combined quantitative and qualitative approaches when studying HRQoL in survivors after childhood cancer. Such an approach could be used to establish clinically relevant thresholds (anchors) for identifi cation of differences in HRQoL and thereby provide stronger evidence regarding the HRQoL of childhood cancer survivors.

Objective To investigate young women's reproductive desire and perceptions of fertility-related information when scheduled for ovarian cyst surgery with a possible impact on fertility. Design Cross-sectional study. Setting University Hospital. Population Women of reproductive age (n = 106, mean age 32.3 years, range 18–44 years) with a diagnosis of ovarian cyst and scheduled ovarian cyst surgery between March 2011 and September 2012 were included. Methods The women answered a questionnaire after the presurgery consultation with the gynecologist. The questionnaire included study-specific measures of reproductive desire, perception of fertility-related information received, worry about future fertility and sociodemographic characteristics. Main outcome measure Reproductive desire and recalled information on the impact of surgery on fertility. Results A high proportion of the women (72%) reported a desire for having children in the future and more than half of them (58%) recalled receiving information about the impact of surgery on fertility. In a multivariable logistic regression model adjusted for parity, education and age, a desire to have children increased the likelihood of recalling having received fertility-related information (odds ratio 3.2, 95% CI 1.1–9.2). Conclusions Almost half of women with reproductive desire had ovarian surgery without recalling a discussion of fertility issues. Development of written information or interactive information might improve women's perception of fertility-related information.

Background: less thanbrgreater than less thanbrgreater thanSurvivors of childhood cancer are a growing population in society. These young people have a high risk of developing chronic health problems with a potential strong impact on their lives. How a childhood cancer experience affects survivors in adolescence has been studied to a limited extent; an increased understanding of this young group is needed to improve follow-up care. less thanbrgreater than less thanbrgreater thanObjective: less thanbrgreater than less thanbrgreater thanThe aim of this study was to gain a deeper understanding of how childhood cancer affects the lives of survivors by exploring adolescents and young adults views of what it is like living with this experience. less thanbrgreater than less thanbrgreater thanMethods: less thanbrgreater than less thanbrgreater thanFifty-nine 11- to 22-year-olds were interviewed a median of 5 years after a cancer diagnosis (response rate, 66%). Data were collected through telephone interviews and were analyzed using qualitative content analysis techniques. less thanbrgreater than less thanbrgreater thanResults: less thanbrgreater than less thanbrgreater thanThree groups of informants were identified according to their descriptions of the influence of cancer treatment on their daily life: feeling like anyone else (informants who described that the cancer experience had almost no influence on current life) (49%), feeling almost like others (those who described some influence) (44%), and feeling different (those describing a great influence on current life) (7%). less thanbrgreater than less thanbrgreater thanConclusions: less thanbrgreater than less thanbrgreater thanMost of the adolescents and young adults appear to get along well, although many informants described that life was affected to some extent by having had cancer. less thanbrgreater than less thanbrgreater thanImplications for Practice: less thanbrgreater than less thanbrgreater thanFollow-up care is needed that can identify those young survivors of childhood cancer having trouble with daily life and offer them support to strengthen their resources in managing difficulties in relation to having had cancer. Funding Agencies|Swedish Society of Nursing||Swedish Childhood Cancer Foundation||Radiumhemmets forskningsfonder||Karolinska Institutet

Objective To investigate symptoms of anxiety and depression in lesbian couples undergoing assisted reproductive treatment (ART), and to study the relationship of demographic data, pregnancy outcome and future reproductive plans with symptoms of anxiety and depression. Design Descriptive, a part of the prospective longitudinal ‘Swedish study on gamete donation’. Setting All university clinics in Sweden performing gamete donation. Population A consecutive sample of 214 lesbian couples requesting assisted reproduction, 165 of whom participated. Methods Participants individually completed three study-specific questionnaires and the Hospital Anxiety and Depression Scale (HADS): time point 1 (T1), at commencement of ART; time point 2 (T2), approximately 2 months after treatment; and time point 3 (T3), 2–5 years after first treatment. Main outcome measures Anxiety and depression (HADS), pregnancy outcome and future reproductive plans. Results The vast majority of lesbian women undergoing assisted reproduction reported no symptoms of anxiety and depression at the three assessment points. A higher percentage of the treated women, compared with the partners, reported symptoms of anxiety at T2 (14% versus 5%, P = 0.011) and T3 (10% versus 4%, P = 0.018), as well as symptoms of depression at T2 (4% versus 0%, P = 0.03) and T3 (3% versus 0%, P = 0.035). The overall pregnancy outcome was high; almost three-quarters of lesbian couples gave birth 2–5 years after sperm donation treatments. Open-ended comments illustrated joy and satisfaction about family building. Conclusion Lesbian women in Sweden reported good psychological health before and after treatment with donated sperm. Funding Agencies|Merck Serono||Uppsala/Orebro Regional Research Council||Medical Research Council of Southeast Sweden||Marianne and Marcus Wallenberg Foundation

ObjectiveTo explore oocyte and sperm donors' emotional stress, experiences of care and satisfaction after donation. DesignProspective multicenter study. SettingsAll fertility clinics performing gamete donation in Sweden during the period 2005 to 2008. PopulationOf 220 eligible oocyte donors who were approached, 181 agreed to complete the first questionnaire and 165 completed the second questionnaire 2 months after oocyte donation. Of 156 eligible sperm donors 119 accepted to complete the first questionnaire before donation. Eighty-nine participants completed the second questionnaire 2 months after sperm donation. MethodsStandardized and study-specific questionnaires. Main outcome measuresSatisfaction with the donation, respondents' mental health and overall care. ResultsA larger percentage of sperm donors (97.8%) were satisfied with their overall experience of being a donor than oocyte donors (85.9%, p = 0.003). Some oocyte and sperm donors did not receive sufficient information about practical issues (9.1% and 13.5%, respectively) and future consequences (12.8% and 3.4%, respectively, p = 0.014). The donors' symptoms of anxiety and depression did not show any differences in relation to negative or positive perceptions of satisfaction. The donors who did not indicate ambivalence before treatment were on average almost five times more satisfied compared with those who did indicate ambivalence (odds ratio 4.71; 95% CI 1.34–16.51). ConclusionsMost donors were satisfied with their contribution after the donation. Oocyte and sperm donors who expressed ambivalence before donation were less satisfied after donation. In vitro fertilization staff fulfilled most of the donors' needs for information and care. Please cite this article as: Skoog Svanberg A, Lampic C, Gejerwall A-L, Gudmundsson J, Karlström P-O, Solensten N-G, Sydsjö G. Gamete donors’ satisfaction; gender differences and similarities among oocyte and sperm donors in a national sample. Acta Obstet Gynecol Scand 2013; 92:1049–1056.

Background: Increasingly, information and communication technology is being used to support persons with dementia living at home and their relatives. The aim of the present intervention study was to describe and explore the use and experiences of using a passive positioning alarm, over time, in daily life among persons with dementia and their spouses. Methods: Using an ethnographically inspired approach, five couples, each including a person with Alzheimer´ s disease and his/her spouse living in their own home, were repeatedly observed and interviewed regarding their experiences of using a passive positioning alarm. Interview text transcripts and field notes were analyzed using qualitative content analysis. Results: The main findings show changes over time, where testing and checking the passive positioning alarm successively led to trust in the alarm and in one own´s ability to use it. These components were a prerequisite for the couples to perceive the value of the alarm. Conclusions: A passive positioning alarm for persons with dementia and their spouses needs to be packaged as a “service” with flexibility for each user and based on user needs, abilities, knowledge and skills. Using a passive positioning alarm can be a valuable support that allows persons with dementia to be alone outdoors and can increase safety and security for them and their spouses. The present study contributes to our understanding of what prerequisites need to be in place and what barriers need to be dealt with before successful implementation can occur.

Agreement between cancer patients and their physicians in the assessment of patient anxiety at follow-up visits.

Background: Clinical research often lacks participants of young age. Adding to the small amount of scientific studies that focus on the population entering adulthood, there are also difficulties to recruit them. To overcome this, there is a need to develop and scientifically evaluate modes for data collection that are suitable for adolescents and young adults. With this in mind we performed 39 online focus group discussions among young survivors of childhood cancer to explore thoughts and experiences around dating, being intimate with someone, and having children. Objective: The aim of the study was to evaluate online focus group discussions as a mode for data collection on sensitive issues among young persons with a cancer experience. Methods: One hundred thirty-three young persons (16-25 years) previously diagnosed with cancer, participated in 39 synchronous online focus group discussions (response rate 134/369, 36%). The mode of administration was evaluated by analyzing participant characteristics and interactions during discussions, as well as group members’ evaluations of the discussions. Results: Persons diagnosed with central nervous tumors (n=30, 27%) participated to a lower extent than those with other cancer types (n=103, 39%; χ 2= 4.89, P=.03). The participants described various health impairments that correspond to what would be expected among cancer survivors including neuropsychiatric conditions and writing disabilities. Even though participants were interested in others’ experiences, sexual issues needed more probing by the moderators than did fertility-related issues. Group evaluations revealed that participants appreciated communicating on the suggested topics and thought that it was easier to discuss sex when it was possible to be anonymous toward other group members. Conclusions: Online focus group discussions, with anonymous participation, are suggested to be a feasible and valid mode for collecting sensitive data among young persons with a cancer experience. [JMIR Res Protoc 2016;5(2):e86]

Purpose We examined changes in working time 16 months after a breast cancer diagnosis and identified factors associated with job discontinuation and/or decreased working time. Patients and Methods This was a population-based cohort study with 735 patients identified in the Regional Breast Cancer Quality Register of Central Sweden. The study sample consisted of 505 women (age < 63 years at diagnosis) who completed questionnaires at baseline and at follow-up (on average 4 and 16 months after diagnosis, respectively). Clinical register data and questionnaire data on sociodemographic factors were obtained at baseline. Self-reported work-related data were obtained at follow-up. Odds ratios were estimated by using logistic regression models. Results Compared with prediagnosis working time, 72% reported no change in working time, 2% reported an increase, 15% reported a decrease, and 11% did not work at follow-up. Chemotherapy increased the likelihood (odds ratio [OR], 2.45; 95% CI, 1.38 to 4.34) of job discontinuation/decreased working time. Among chemotherapy recipients, associated factors included full-time work prediagnosis (OR, 3.25; 95% CI, 1.51 to 7.01), cancer-related work limitations (OR, 5.26; 95% CI, 2.30 to 12.03), and less value attached to work (OR, 3.69; 95% CI, 1.80 to 7.54). In the nonchemotherapy group, older age (OR, 1.09; 95% CI, 1.02 to 1.17) and less value attached to work (OR, 5.00; 95% CI, 2.01 to 12.45) were associated with the outcome. Conclusion The majority of women treated for breast cancer returned to their prediagnosis working time. Chemotherapy and cancer-related work limitations are important factors to take into account in identifying women in need of support. Moreover, it is important to consider the woman's own valuation of labor market participation.

To study donors' motivation and ambivalence before donation of gametes.Cross-sectional study.Seven Swedish university hospital clinics. Sample. Of the 220 eligible oocyte donors and 156 eligible sperm donors who were approached, 181 (82%) oocyte donors and 119 (76%) sperm donors agreed to participate.Gamete donors completed a questionnaire in the clinic prior to the donation.Motives and ambivalence towards donation.In general, gamete donors donated for altruistic reasons (95%). A greater percentage of oocyte than sperm donors had a personal experience of biological children, which motivated them to donate (65 vs. 32%). A greater percentage of sperm donors compared with oocyte donors were curious about their own fertility (24 vs. 9%), and they also believed that they were contributing what they regarded as their own good genes to other couples (45 vs. 20%). Prior to donation, potential sperm donors were more ambivalent towards donating than were oocyte donors (39 and 21%, p0.001).The motives to donate gametes are mainly altruistic. We conclude that men and women differ in their view towards donating gametes. Sperm donors had a higher degree of ambivalent feelings towards donation than oocyte donors.

background: In the USA, the postponement of childbearing reflects contemporary social norms of delaying marriage, pursing educational goals and securing economic stability prior to attempting conception. Although university students are more likely to delay childbearing, it is unclear to what extent they are aware of age-related fertility decline. The current study is the first of its kind to assess fertility awareness and parenting attitudes of American undergraduate university students. methods: Two-hundred forty-six randomly selected undergraduate university students (138 females and 108 males) completed an online self-report survey adapted from the Swedish Fertility Awareness Questionnaire. Students were evenly distributed between the freshman, sophomore, junior and senior classes with a mean age of 20.4 years. results: Participants wanted to have their first and last child within the window of a woman’s fertility. However, participants demonstrated a lack of fertility awareness by vastly overestimating the age at which women experience declines in fertility, the likelihood of pregnancy following unprotected intercourse and the chances that IVF treatments would be successful in the case of infertility. Nearly 9 in 10 participants want to have children in the future and viewed parenthood as a highly important aspect of their future lives. conclusions: Delaying childbearing based on incorrect perceptions of female fertility could lead to involuntary childlessness. Education regarding fertility issues is necessary to help men and women make informed reproductive decisions that are based on accurate information rather than incorrect perceptions.

Do heterosexual parents of young children following oocyte donation (OD) and sperm donation (SD) tell or intend to tell their offspring about the way he/she was conceived? less thanbrgreater than less thanbrgreater thanFollowing successful treatment with oocytes or sperm from identity-release donors in Sweden, almost all heterosexual couples intend to tell their offspring about the way he/she was conceived and some start the information-sharing process very early. less thanbrgreater than less thanbrgreater thanAlthough the Swedish legislation on identity-release gamete donors has been in effect since 1985, there is a discrepancy between the behaviour of donor-insemination parents and the legal intention that offspring be informed about their genetic origin. The present study contributes data on a relatively large sample of oocyte and sperm recipient couples intended compliance with the Swedish legislation. less thanbrgreater than less thanbrgreater thanThe present study constitutes a follow-up assessment of heterosexual couples who had given birth to a child following treatment with donated oocytes. Data collection was performed during 20072011; participants individually completed a questionnaire when the child was between 1 and 4 years of age. less thanbrgreater than less thanbrgreater thanThe present study is part of the Swedish Study on Gamete Donation, a prospective longitudinal cohort study including all fertility clinics performing gamete donation in Sweden. For children conceived via OD, 107 individuals (including 52 couples and 3 individuals) agreed to participate (73 response). For children conceived via SD, the response rate was 70 (n 122 individuals, including 59 couples and 4 individuals). Mean age of participants was 34 years (SD 4.4) and they reported a high level of education. less thanbrgreater than less thanbrgreater thanThe majority of participants (78) planned to tell the child about the donation, 16 had already started the information-sharing process and 6 planned not to tell their child about the donation or were undecided. Many were unsure about a suitable time to start the disclosure process and desired more information about strategies and tools for information sharing. Agreement on disclosure to offspring within the couple was related to the quality of the partner relationship. less thanbrgreater than less thanbrgreater thanThere is a risk of selection bias, with gamete recipients preferring secrecy and non-disclosure declining study participation. The results may be regarded as partly generalizable to heterosexual couples with young children following treatment with gametes from legislatively mandated identity-release donors in an established donor programme. less thanbrgreater than less thanbrgreater thanStudy funding by Merck Serono, The Swedish Research Council and The Family Planning Fund in Uppsala. No conflicts of interest to declare. Funding Agencies|Merck Serono||Family Planning Fund in Uppsala||Swedish Research Council

One of the major factors impacting on a couples relationship is the desire to have children. To many couples having a child is a confirmation of their love and relationship and a means to deepen and develop their intimate relationship. At the same time parental stress can impact on relationship quality. Relationship quality in lesbian couples is, currently, sparsely studied. The aim of the present study was to compare lesbian and heterosexual couples perceptions of their relationship quality at the commencement of assisted reproduction, and to relate this to background data such as educational level, having previous children and, for lesbian couples, the use of a known versus anonymous donor. less thanbrgreater than less thanbrgreater thanThe present study is part of the prospective longitudinal oSwedish study on gamete donation, including all fertility clinics performing donation treatment in Sweden. Of a consecutive cohort of 214 lesbian couples about to receive donor insemination and 212 heterosexual couples starting regular IVF treatment, 166 lesbian couples (78 response) and 151 heterosexual couples (71 response) accepted participation in the study. At commencement of assisted reproduction participants individually completed questionnaires including the instrument oENRICH, which is a standardized measure concerning relationship quality. less thanbrgreater than less thanbrgreater thanIn general, the couples rated their relationship quality as good, the lesbian couple better than the heterosexuals. In addition, the lesbian women with previous children assessed their relationship quality lower than did the lesbian woman without previous children. For heterosexual couples previous children did not influence their relationship quality. Higher educational levels reduced the satisfaction with the sexual relationship (P 0.04) for treated lesbian women, and enhanced the rating of conflict resolution for treated lesbian women (P 0.03) and their partners (P 0.02). Heterosexual women with high levels of education expressed more satisfaction with communication in their relationship (P 0.02) than did heterosexual women with lower educational levels. less thanbrgreater than less thanbrgreater thanIn this Swedish study sample of lesbian and heterosexual couples relationships, we found that they were generally well adjusted and stable in their relationships when starting treatment with donated sperm or IVF, respectively. However, where lesbian women had children from a previous relationship, it decreased relationship quality. For the heterosexual couples previous children did not affect relationship quality. Funding Agencies|Merck Serono||Uppsala/ Orebro Regional Research Council||Medical Research Council of Southeast Sweden

Coping, psychosocial well-being, situation-specific anxiety and cancer-related worry were assessed in 197 consecutive cancer patients attending follow-up visits. Participants completed questionnaire on three occasions: at the follow-up visit, some days later (n = 175) and three weeks later (n = 125). High levels of coping styles 'Anxious Preoccupation' and 'Helplessness/Hopelessness' were associated with low levels of psychosocial well-being, more situation-specific anxiety and more cancer-related worry. High levels of 'Fighting Spirit' and 'Fatalistic' were found to be associated with high psychosocial well-being and, for 'Fighting Spirit', also with less cancer-related worry. Patients with a 'dismal' prognosis were found to have higher levels of 'Helplessness/Hopelessness' than patients with a more 'favorable' prognosis. Clinical implications of these findings are discussed.