Fertility-related knowledge and reproductive goals in childhood cancer survivors: short communication.

STUDY QUESTION: Do young adult survivors of childhood cancer know their fertility status, in the context of their parenthood goals and screening for gonadal functioning? SUMMARY ANSWER: While 80% of survivors (who were without children) wanted children in the future, most did not know their fertility status, and screening for gonadal functioning was underutilized. WHAT IS KNOWN ALREADY: Survivors of childhood cancer are at risk for infertility, but fertility counseling and assessment are underutilized. Separate studies indicated that survivors' fertility-related knowledge is poor and that they often wanted to have children. Yet, studies have not investigated the intersection of both issues, as well as potential distress if parenthood goals are not met. STUDY DESIGN, SIZE, DURATION: Young adult male and female survivors of childhood cancer (N = 149) completed cross-sectional surveys, and data for those without children (n = 105, 70.5%) are presented here. PARTICIPANTS/MATERIALS, SETTING, METHODS: Participants were 20-40 years old (M = 26.5), diagnosed 5-33 years prior to study participation, and completed questionnaires online. Knowledge of fertility status, parenthood goals, and potential distress if survivors were unable to have children were assessed. Medical records were reviewed for hormone levels as indicators of screening for gonadal functioning. MAIN RESULTS AND THE ROLE OF CHANCE: Most survivors (n = 81; 77.1%) did not know their fertility status, while over 80% (n = 89) wanted children (neither aspect varied by socio-demographic/cancer-specific factors). Two-thirds of survivors indicated they would be distressed if parenthood goals remained unfulfilled; especially female (versus male, t = 2.64; P = 0.01) or partnered (versus single, t = -3.45; P < 0.001) survivors. Forty survivors (38.1%) had documented assessments of gonadal functioning, of which 33 (82.5%) reported not knowing their fertility status. LIMITATIONS, REASONS FOR CAUTION: Relevant risk factors may have not been identified owing to limited sample size and missing treatment information. The underutilization of screening for gonadal functioning needs further exploration in other pediatric centers. WIDER IMPLICATIONS OF THE FINDINGS: Most adult childhood cancer survivors want to become parents, but do not know their fertility status, which could cause significant psychological distress. Healthcare providers should continuously address fertility among survivors, but more research is needed on how to implement routine fertility counseling and/or testing. STUDY FUNDING/COMPETING INTEREST(S): This study was funded by the Research Institute at Nationwide Children's Hospital (V.L.) and Dutch Cancer Society (RUG2009-4442, M.A.T.). All authors have no conflict of interest to declare.

Feasibility of implementing the 'Screening for Distress and Referral Need' process in 23 Dutch hospitals.

PURPOSE: In the Netherlands, the three-step process 'Screening for Distress and Referral Need' (SDRN) was developed for helping identifying, and referring cancer patients suffering from clinically relevant distress or needing a referral. This process includes (1) instrument completion, (2) patient-care provider discussion of the responses, and (3) referral based on 1 and 2. The Netherlands Comprehensive Cancer Organisation, location Groningen (IKNL-G), initiated the implementation of SDRN and developed an implementation roadmap, including procedure and materials. This exploratory study examines the feasibility of SDRN implementation in hospitals, seen from healthcare providers' perspective, responsible for implementation, and those executing SDRN. METHODS: Healthcare providers, from 22 hospitals and from 5 oncology departments of the University Medical Center Groningen (=25 % of Dutch hospitals), evaluated their experiences by responding to a 26-item internet survey. RESULTS: Twenty-five participants (response = 93 %) completed the survey. SDRN was implemented in 21 hospitals (implementation = 91 %), in two thirds of these hospitals in more than one patient group. Adoption of IKNL-G's roadmap elements varied between 84 and 100 %. Participants' average satisfaction score with SDRN was 6.5 (possible range = 0-10, range found = 5-8). Significant positive relationships were found between this satisfaction and participants' satisfaction with frequency of SDRN (p = 0.02), and keeping logistical agreements (p = 0.04). Participants were dissatisfied with SDRN's limited current availability to only select patient groups and only certain disease phases. CONCLUSIONS: The implementation of SDRN in daily practice, supported by a pre-developed implementation roadmap, is highly feasible. Continuous attention to SDRN execution, broadening implementation to all forms of cancer, and during the total disease trajectory seems vital to improve healthcare providers' satisfaction.

The role of meaning in the prediction of psychosocial well-being of testicular cancer survivors.

Stressful life events, such as cancer, may threaten the belief that life is meaningful and this may have a negative effect on well-being. This study aimed at: (1) examining meaning in testicular cancer survivors (TCSs); (2) changes in outlook on life after testicular cancer (TC); (3) the contribution of meaning in the prediction of psychosocial well-being and cancer-related distress. A total of 354 TCSs completed relevant questionnaires. Results showed that: (1) TCSs experience their lives as meaningful; (2) most TCSs (60%) report a more positive outlook on life since TC; (3) meaning is the most important predictor for psychosocial well-being, but its relationship with cancer-related distress is weak. These results indicate that the cancer experience did not (permanently) disrupt the sense of meaning in TCSs. Furthermore, results confirm the idea that a sense of meaning has a positive effect on psychosocial well-being. Meaning appeared to have little effect on cancer-related distress. However, previous research has shown that this relationship may be too complex to unravel with a cross-sectional design. Therefore, it is suggested to further investigate the underlying interacting mechanisms between meaning and cancer-related distress.

Quality of life of testicular cancer survivors and the relationship with sociodemographics, cancer-related variables, and life events.

GOALS OF WORK: The aim of this study was to (1) assess the quality of life (QoL) of testicular cancer survivors (TCSs) by comparing them to a reference group; (2) investigate the relationship between the QoL of TCSs and sociodemographics, cancer-related variables, and life events; and (3) identify TCSs at risk for an impaired QoL. PATIENTS AND METHODS: Of the TCSs approached, 50% (n=354) participated and completed a generic QoL questionnaire (RAND-36) once. Time since completion of treatment varied from 3 months to 24 years. MAIN RESULTS: (1) TCSs had significantly higher mean scores on the subscales physical functioning (p=0.02) and pain (p=0.001), but lower mean scores on mental health (p=0.04) and vitality (p<0.001) than a reference group of men. The effect sizes of these differences were small to insignificant. (2) Employment status and chronic disease were the main correlates of the QoL of TCSs. Age, negative life events, type of treatment, and the experience of a second cancer event were moderately associated with some subscales as well. (3) The joint burden of unemployment and a chronic disease was the strongest predictor for an impaired functioning. CONCLUSIONS: On a group level, TCSs experience a good QoL, but a small group appeared to be at risk for an impaired functioning, namely, those who were unemployed and had a chronic disease. The variance explained by the variables studied was low, indicating that more important predictors remain to be identified.