Participation, challenges and needs in children with down syndrome during cancer treatment at hospital: a qualitative study of parents' experiences.

Background: Studies report that it can be challenging to assess and treat side-effects and symptoms among children who have impairments and difficulties in expressing their needs. Children with Down syndrome have an increased vulnerability and an increased risk for contracting leukaemia. There is sparse knowledge about the parental experience of how treatment and side-effects affect children with Down syndrome with leukaemia, as well as the role of participation during treatment. Purpose: This study aimed to explore the perceptions of parents of children with Down syndrome and leukaemia regarding their child's treatment, side effects and participation during hospital care. Methods: A qualitative study design was used, and interviews were conducted with a semi-structured interview-guide. Fourteen parents of 10 children with Down syndrome and acute lymphoblastic leukaemia from Sweden and Denmark, 1-18 years of age, participated. All children had completed therapy or had a few months left before the end of treatment. Data was analysed according to qualitative content analysis. Results: Four sub-themes were identified: (1) Continuously dealing with the child's potential susceptibility; (2) Confidence and worries regarding decisions related to treatment regulation; (3) Challenges in communication, interpretation, and participation; and (4) Facilitating participation by adapting to the child's behavioural and cognitive needs. The sub-themes were bound together in an overarching theme, which expressed the core perception "Being the child's spokesperson to facilitate the child's participation during treatment". The parents expressed this role as self-evident to facilitate communication regarding the needs of the child, but also regarding how the cytotoxic treatment affected the vulnerable child. Parents conveyed the struggle to ensure the child's right to receive optimal treatment. Conclusion: The study results highlight parental challenges regarding childhood disabilities and severe health conditions, as well as communication and ethical aspects regarding to act in the best interests of the child. Parents played a vital role in interpreting their child with Down syndrome. Involving parents during treatment enables a more accurate interpretation of symptoms and eases communication and participation. Still, the results raise questions regarding issues related to building trust in healthcare professionals in a context where medical, psychosocial and ethical dilemmas are present.

Family Formation and Socio-Economic Status among 35-Year-Old Men Who Have Survived Cancer in Childhood and Early Adulthood: A Register-Based Cohort Study.

INTRODUCTION: The number of children and young adults who survive cancer has steadily increased over the past decades. Consequently, life circumstances after cancer have gained increasing importance. The aim of this study was to explore family formation and socio-economic status among 35-year-old men having survived cancer in childhood or early adulthood compared to an age-matched comparison group. METHODS: This study is a national, register-based cohort study among 35-year-old men. Men diagnosed with cancer in childhood and early adulthood were registered between 1978 and 2016. At the time of diagnosis, each patient was randomly matched with 150 men without cancer from the background population within the same birth year. Those still alive at the age of 35 years were included in the study population. RESULTS: The study population consisted of 4,222 men diagnosed with cancer in childhood or early adulthood and 794,589 men in the age-matched comparison group. Men who have survived cancer during childhood or early adulthood have a reduced probability of having children, and lower probability of getting married or of cohabitation than those from an age-matched comparison group. Men who have survived CNS cancer also have a lower probability of having a higher education than high school and a higher probability of being outside the workforce than those from an age-matched comparison group. DISCUSSION/CONCLUSION: Many men who have survived cancer during childhood or early adulthood are influenced by their cancer later in life, which was apparent in family formation, educational achievements, and labour market attachment. Continued focus on rehabilitation and needs for support among the male survivors of childhood and youth cancer is warranted.

Risk of hospitalization for early onset of cardiovascular disease among infertile women: a register-based cohort study.

STUDY QUESTION: Is female infertility predictive of a woman's future risk of early cardiovascular disease (CVD)? SUMMARY ANSWER: Female infertility does not seem to be predictive of early CVD during a mean follow-up of 9 years. WHAT IS KNOWN ALREADY: Associations between infertility and comorbidity have been found in several studies, but data on the association between female infertility and risk of CVD are scarce and inconclusive. STUDY DESIGN, SIZE, DURATION: In this nationwide cohort study, we included 87 221 women registered in the Danish National IVF register, undergoing medically assisted reproduction (MAR) between 1st of January 1994 and 31st of December 2015. The cohort was followed for incident hospitalization due to CVD in the Danish National Patient Register from enrollment to 31 December 2015. Women with a history of CVD prior to enrollment were excluded. Cox proportional hazard models with age as the underlying time scale were used to estimate hazard ratios (HR) with 95% CI of CVD among women with an infertility diagnosis, compared to women without an infertility diagnosis. All analyses were adjusted for educational attainment. PARTICIPANTS/MATERIALS, SETTING, METHODS: Female infertility and the reason for infertility was diagnosed and registered in the IVF register by specialists in Danish public and private fertility clinics since 1st of January 1994. In our cohort, 53 806 women (61.7%) were diagnosed with female factor infertility, while 33 415 (38.3%) did not have a female factor infertility diagnosis and made up the reference group. MAIN RESULTS AND THE ROLE OF CHANCE: A total of 686 (1.3%) infertile women were hospitalized for CVD compared to 250 (0.7%) among women without an infertility diagnosis during a mean follow-up time of 9 years. We found no increased risk of early CVD in our analyses (adjusted HR 0.98, 95% CI: 0.85;1.14). Likewise, analyses stratified by specific infertility diagnosis, showed no risk difference. LIMITATIONS, REASONS FOR CAUTION: We were unable to adjust for confounding parameters such as body mass index, cigarette smoking or alcohol consumption. These results may not be generalizable to infertile women who do not seek out fertility treatment, or infertile women with other lifestyle characteristics than Danish women. WIDER IMPLICATIONS OF THE FINDINGS: Diagnosing female infertility or the time of MAR does not seem to be a window of opportunity where early screening for cardiovascular disease risk factors can have a prophylactic potential. STUDY FUNDING/COMPETING INTEREST(S): This study is part of the ReproUnion collaborative study, co-financed by the European Union, Interreg V ÖKS. None of the authors declare any conflict of interest.

What do people know about fertility? A systematic review on fertility awareness and its associated factors.

INTRODUCTION: Recent evidence indicates that reproductive-age people have inadequate fertility awareness (FA) concerning fertility, infertility risk factors, and consequences of delaying childbearing. However, no study has tried to summarize these studies and to clarify the variables associated with FA, namely the role of gender, age, education, and reproductive status on FA. METHODS: A literature search up to February 2017 was conducted using the EBSCO, Web of Science, Scielo, and Scopus electronic databases with combinations of keywords and MeSH terms (e.g. 'awareness' OR 'health knowledge, attitudes, practice' AND 'fertility'; 'fertile period'; 'assisted reprod*'). RESULTS: Seventy-one articles met the eligibility criteria and were included. The main results showed that participants report low-to-moderate FA. Higher levels of FA were shown by women, highly educated individuals, people who reported difficulties with conceiving, and those who had planned their pregnancies. Having or desiring to have children was not related to FA level. An inconsistent association between study participant age and FA was observed, with some studies indicating that older participants had higher FA, but others found an opposite result or did not find any association. CONCLUSION: The current findings suggest that interventions to increase FA are warranted, especially those targeting men, people with low education, and in family planning settings. Interventions and campaigns should be customized to meet individuals' needs regarding FA. Because of the high heterogeneity regarding the assessment of FA, these conclusions must be interpreted with caution.

Quality of life and psychosocial and physical well-being among 1,023 women during their first assisted reproductive technology treatment: secondary outcome to a randomized controlled trial comparing gonadotropin-releasing hormone (GnRH) antagonist and GnRH agonist protocols.

OBJECTIVE: To compare self-reported quality of life, psychosocial well-being, and physical well-being during assisted reproductive technology (ART) treatment in 1,023 women allocated to either a short GnRH antagonist or long GnRH agonist protocol. DESIGN: Secondary outcome of a prospective phase 4, open-label, randomized controlled trial. Four times during treatment a questionnaire on self-reported physical well-being was completed. Further, a questionnaire on self-reported quality of life and psychosocial well-being was completed at the day of hCG testing. SETTING: Fertility clinics at university hospitals. PATIENT(S): Women referred for their first ART treatment were randomized in a 1:1 ratio and started standardized ART protocols. INTERVENTION(S): Gonadotropin-releasing hormone analogue; 528 women allocated to a short GnRH antagonist protocol and 495 women allocated to a long GnRH agonist protocol. MAIN OUTCOME MEASURE(S): Self-reported quality of life, psychosocial well-being, and physical well-being based on questionnaires developed for women receiving ART treatment. RESULT(S): Baseline characteristics were similar, and response rates were 79.4% and 74.3% in the GnRH antagonist and GnRH agonist groups, respectively. Self-reported quality of life during ART treatment was rated similar and slightly below normal in both groups. However, women in the GnRH antagonist group felt less emotional (adjusted odds ratio [AOR] 0.69), less limited in their everyday life (AOR 0.74), experienced less unexpected crying (AOR 0.71), and rated quality of sleep better (AOR 1.55). Further, women receiving GnRH agonist treatment felt worse physically. CONCLUSION(S): Women in a short GnRH antagonist protocol rated psychosocial and physical well-being during first ART treatment better than did women in a long GnRH agonist protocol. However, the one item on self-reported general quality of life was rated similarly. CLINICAL TRIAL REGISTRATION NUMBER: NCT00756028.

Is male factor infertility associated with midlife low-grade inflammation? A population based study.

Male factor infertility is associated with an increased risk of disease and mortality, which has been related to markers of chronic systemic inflammation. The objective of this study was to investigate the association between male factor infertility and low-grade inflammation and furthermore to examine the lifetime prevalence of male factor infertility and overall infertility (also including female and couple infertility). The study population consisted of 2140 members of the Metropolit 1953 Danish Male Birth Cohort who had participated in the Copenhagen Aging and Midlife Biobank data collection in 2009-2011. Information on male factor infertility and overall infertility was obtained from a questionnaire, and low-grade inflammation was evaluated as the highest plasma levels of C-reactive protein, interleukin-6 and tumour necrosis factor-alpha in the population. The level of interleukin-6 was significantly higher among men with male factor infertility compared with other men adjusted for potential confounders. This was not found for the two other inflammatory markers. The lifetime prevalence of male factor infertility and overall infertility were 10.2% and 17.9%, respectively. The findings suggest that male factor infertility might be associated with an increased level of interleukin-6.

Medical and social egg freezing: internet-based survey of knowledge and attitudes among women in Denmark and the UK.

INTRODUCTION: Until recently, limited options for preserving fertility in order to delay childbearing were available. Although egg freezing and successful thawing is now possible, it remains unclear to what extent women are aware of the availability of this technique, their attitudes towards its use, or the circumstances under which this technique may be considered. MATERIAL AND METHODS: An online cross-sectional survey was designed to investigate knowledge and attitudes of women in Denmark and the UK on egg freezing and their potential intentions regarding the procedure. RESULTS: Data was collected from September 2012 to September 2013 and the responses of 973 women were analyzed. In total, 83% of women reported having heard of egg freezing, and nearly all considered it acceptable for medical indications, whilst 89% considered it acceptable for social reasons. Overall, 19% expressed active interest in the procedure, and 27% expressed possible interest. Key factors found to positively influence attitudes to accepting the procedure were reassurance that it would not affect future fertility and greater than 50% chance of achieving a live birth. Characteristics significantly associated with intention to freeze eggs were being single, age under 35 years, childlessness, and a history of infertility. In this group, risk and cost were less important considerations. CONCLUSIONS: This study indicates that there is widespread awareness and support of the availability of eggs freezing for reproductive planning. Reassurance regarding its efficacy appears more important than its potential adverse effects on their health or that of future children, or the costs of the procedure.

Young female cancer patients' experiences with fertility counselling and fertility preservation-a qualitative small-scale study within the Danish health care setting.

INTRODUCTION: Fertility counselling for young women newly diagnosed with cancer is an important field of preconceptional counselling. This qualitative, small-scale study explored how young women newly diagnosed with cancer experienced specialized fertility preservation counselling and treatment in the public Danish health care system. METHODS: Semi-structured, in-depth interviews were conducted with five women below 40 years recently diagnosed with cancer. All women received fertility counselling by a fertility specialist at the Fertility Clinic, University Hospital of Copenhagen, Denmark before initiation of cancer treatment. Participants were interviewed at a place chosen by them, and interviews were recorded and transcribed verbatim. Data were analysed using systematic text condensation developed by Malterud and inspired by Giorgi's phenomenological analysis. RESULTS: None of the participants were aware that chemotherapy could destroy their eggs. The participants described how specialized fertility counselling and fertility preservation contributed to a belief in life after cancer, which gave them hope that they would survive their cancer disease. Further, the women described how the possibility of fertility preservation removed a huge concern and enabled them to concentrate on their cancer treatment and on getting better. CONCLUSION: Overall, the specialized fertility counselling and treatment to preserve fertility was highly valued. The women felt it gave them a choice about their future fertility. The fertility expert presented the various fertility-preserving scenarios, and the women were content that they had an actual choice.

Has fertility declined from mid-1990s to mid-2000s?

OBJECTIVE: To assess changes in self-reported fertility from the mid-1990s to the mid-2000s. DESIGN: The study is a retrospective population-based study. SETTING: The study applied a dataset from two cross-sectional surveys conducted in the mid-1990s and some 10 years later, inviting all women in a county in Norway. POPULATION: Women aged 50-59 years enrolled in either survey constituted two cohorts. Data on 4468 women in the first survey (Cohort 1940) and 4951 women in the latter survey (Cohort 1950) were collected by structured questionnaires. MAIN OUTCOME MEASURES: Prevalence of fertility, infertility with subcategories subfertility and involuntary childlessness, as well as childlessness was estimated and compared between the surveys. Possible sociodemographic and lifestyle predictors of fertility were assessed at different points in time. RESULTS: Fertility declined over the two successive surveys; 87.8% of the women in Cohort 1940 were fertile compared with 84.2% of the women in Cohort 1950 (p = 0.000). The prevalence of infertility increased over time due to an increase in subfertility from 7.8 to 10.6% (p = 0.000). The level of education increased with time, as did at-risk alcohol consumption and smoking, and these factors were adversely associated with fertility. The proportion of childless women increased across surveys (p = 0.004) but relatively fewer women were involuntarily childless in Cohort 1950 than in Cohort 1940 (p = 0.543). CONCLUSION: Fertility, measured at 10-year intervals, declined significantly. The decline in fertility was related to changes in subfertility. Adjustments for sociodemographic and lifestyle factors did not fully explain the decline in fertility.

Cognitive function in adult offspring of women with gestational diabetes--the role of glucose and other factors.

OBJECTIVE: We aimed to evaluate cognitive function in adult offspring of women with diet-treated gestational diabetes and to study potential associations with maternal glucose values. MATERIALS AND METHODS: In 2003-2005 cognitive function was assessed in a cohort of 18-27 year old offspring of women with diet-treated gestational diabetes mellitus (n = 153) and offspring from the background population (n = 118). The main outcome measure was global cognitive score derived from Raven's Progressive Matrices and three verbal subtests from the Weschler Adult Intelligence Scale. Maternal fasting- and 2-hour blood glucose values from the diagnostic oral glucose tolerance test were used as exposure variables. RESULTS: Offspring of women with gestational diabetes mellitus had a lower global cognitive score, than offspring from the background population (93.1 vs. 100.0, P<0.001). However, when adjusted for maternal age at delivery, parity, smoking during pregnancy, pre-pregnancy overweight, family social class, parental educational level, gender, birth weight, gestational age, perinatal complications and offspring age at follow-up, the difference was no longer statistically significant. Offspring global cognitive score decreased significantly with increasing maternal fasting glucose (ß = -4.5, 95% CI -8.0 to -0.9, P = 0.01) and 2-hour glucose (ß = -1.5, -2.9 to -0.2, P = 0.03) in univariate general linear models, but not when adjusted for family social class and parental educational level. CONCLUSIONS: Lower cognitive test scores in adult offspring of women with diet-treated gestational diabetes were explained by well known predictors of cognitive function, but not by maternal hyperglycaemia during pregnancy. We find it reassuring that mild intrauterine hyperglycaemia does not seem to have adverse effect on offspring cognitive function.

The influence of female and male body mass index on live births after assisted reproductive technology treatment: a nationwide register-based cohort study.

OBJECTIVE: To investigate the independent and combined associations between female and male body mass index (BMI) on the probability of achieving a live birth after treatments with in vitro fertilization (IVF) or intracytoplasmic sperm injection (ICSI) under adjustment for relevant covariates. DESIGN: Population-based cohort study. SETTING: Danish national registers. PATIENT(S): Patients with permanent residence in Denmark receiving IVF or ICSI treatment with use of autologous oocytes from January 1, 2006, to September 30, 2010. INTERVENTION(S): None. MAIN OUTCOME MEASURE(S): Live birth. Analyses were adjusted for age and smoking at treatment initiation and results stratified by BMI groups and presented by IVF/ICSI treatment. RESULT(S): In total, 12,566 women and their partners went through 25,191 IVF/ICSI cycles with 23.7% ending in a live birth. Overweight and obese women with regular ovulation had reduced odds of live birth (adjusted OR 0.88, 95% CI 0.79-0.99 and adjusted OR 0.75, 95% CI 0.63-0.90, respectively) compared with normal-weight women. IVF-treated couples with both partners having BMI ≥25 kg/m(2) had the lowest odds of live birth (adjusted OR 0.73, 95% CI 0.48-1.11) compared with couples with BMI <25 kg/m(2). BMI showed no significant effect on chance of live birth after ICSI. CONCLUSION(S): Increased female and male BMI, both independently and combined, negatively influenced live birth after IVF treatments. With ICSI, the association with BMI was less clear.

Expectations to and evaluation of a palliative home-care team as seen by patients and carers.

OBJECTIVES: Although the number of palliative home-care teams is increasing, knowledge of what patients and principal informal carers expect from a home-care team is sparse. We aimed to elucidate this as well as evaluate a home-care team. PATIENTS AND METHODS: Individual semi-structured interviews with nine patients and six carers before receiving home care and 2-4 weeks after. In total, 26 interviews were conducted. Interviews were analysed with Template Analysis. Peer debriefing was performed. MAIN RESULTS: Patients and carers expected the team members to have specialised knowledge in palliative care and to improve their sense of security being at home. They also expected respite for carers and activities for patients. They evaluated the team positively but missed respite for carers and 24-h on-call service. CONCLUSIONS: Patients and carers found the home-care team essential to their sense of security being at home. Primary health care professionals must receive any necessary training outside patients' homes. Offering respite for carers and 24-h on-call service would be an improvement.

Cooperating with a palliative home-care team: expectations and evaluations of GPs and district nurses.

BACKGROUND: Palliative home-care teams often cooperate with general practitioners (GPs) and district nurses. Our aim was to evaluate a palliative home-care team from the viewpoint of GPs and district nurses. METHODS: GPs and district nurses received questionnaires at the start of home-care and one month later. Questions focussed on benefits to patients, training issues for professionals and cooperation between the home-care team and the GP/ district nurse. A combination of closed- and open-ended questions was used. RESULTS: Response rate was 84% (467/553). Benefits to patients were experienced by 91 %, mainly due to improvement in symptom management, 'security', and accessibility of specialists in palliative care. After one month, 57% of the participants reported to have learnt aspects of palliative care, primarily symptom control, and 89% of them found cooperation satisfactory. Dissatisfaction was caused mainly by lack of information from the home-care team to primary-care professionals. CONCLUSION: GPs and district nurses welcomed the palliative home-care team and most experienced benefits to patients. Strengthened communication, initiated by the home-care team would enhance cooperation.

Neonatal outcome in a Danish national cohort of 3438 IVF/ICSI and 10,362 non-IVF/ICSI twins born between 1995 and 2000.

BACKGROUND: In Denmark, one-third of twin pregnancies are the result of IVF/ICSI treatment. Limited data on neonatal outcome in IVF/ICSI twins are available in the literature. METHODS: A register study was conducted on neonatal morbidity and mortality in a complete national twin cohort including all 3438 (3393 live-born) IVF/ICSI and 10,362 (10,239 live-born) non-IVF/ICSI twins born between 1995 and 2000. Twins were identified in the National Medical Birth Registry and dichotomized into IVF/ICSI and non-IVF/ICSI by cross-reference with the Danish IVF Registry. Data on neonatal morbidity and mortality were retrieved from the Danish Patient Registry and the Danish Registry of Causes of Deaths. In order to exclude monozygotic twins, sub-analyses on unlike-sex twins were conducted. RESULTS: A birth weight discordance of >20% was observed in 20.6% of IVF/ICSI versus 15.7% of control twin pairs (P < 0.001). The risk of discordant birth weight >20% was OR 1.29 (95% CI 1.04-1.58) in unlike-sex IVF/ICSI twins versus control twins. The risk of delivery at <37 completed weeks and birth weight <2500 g was similar in the two cohorts; however, in unlike-sex IVF/ICSI versus control twins the risk of delivery at <37 weeks and birth weight <2500 g was OR 1.22 (95% CI 1.09-1.38) and OR 1.25 (1.11-1.40) respectively. After stratification for maternal age and parity, these risks disappeared. IVF/ICSI twins carried a higher risk of admittance to a neonatal intensive care unit (NICU) than control twins (OR 1.18, 95% CI 1.09-1.27), and this was even more pronounced in unlike-sex twins [OR 1.34 (95% CI 1.19-1.51)]. No differences were observed in malformation or mortality rates between the two cohorts. CONCLUSIONS: Despite higher birth weight discordance and more NICU admissions among IVF/ICSI twins, neonatal outcome in IVF/ICSI twins seems to be comparable with that of non-IVF/ICSI twins, when only dizygotic twins were considered in the comparisons.

Alcohol use as predictor for infertility in a representative population of Danish women.

BACKGROUND: Our aim was to examine the association between use of alcohol and subsequent incidence of primary infertility. METHODS: The study subjects were chosen from a population-based cohort of Danish women aged 20-29 years. Eligible women were nulliparous and not pregnant (n = 7760). Information on alcohol intake and potential confounders (age, education, marital status, diseases in the reproductive organs, and cigarette smoking) was assessed at enrollment. The incidence of fertility problems during follow-up was obtained by record linkage with the Danish Hospital Discharge Register and the Danish Infertility Cohort Register. Main outcome measures were hazard ratios of infertility according to alcohol intake at baseline estimated in a multivariate Cox proportional hazards model. RESULTS: During a mean follow-up of 4.9 years, 368 women had experienced infertility. Alcohol intake at baseline was unassociated with infertility among younger women, but was a significant predictor for infertility among women above age 30. In this age group, the adjusted hazard ratio for consuming seven or more drinks per week was 2.26 (95% confidence interval: 1.19-4.32) compared with women consuming less than one drink per week. CONCLUSIONS: These findings suggest that alcohol intake is a predictor for infertility problems among women in the later reproductive age group.