BackgroundThe 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.ObjectiveThe study aims to describe the development of a Web-based intervention in long-term collaboration with patient research partners (PRPs).MethodsTen 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.ResultsThe 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.ConclusionsWith 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 sex...

PurposeThe purpose of the study is to evaluate the feasibility of a self-help web-based intervention to alleviate sexual problems and fertility distress in adolescents and young adults with cancer.MethodsTwenty-three persons with cancer (19 women and 4 men, age 18–43, 1–5 years post-diagnosis of lymphoma, breast, gynecologic, central nervous system, or testicular cancer) were recruited to test a 2-month web-based program targeting sexual problems or fertility distress. The programs were organized in modules with educational and behavior change content, including texts, illustrations, exercises, and video vignettes. The program also included a discussion forum and an “ask the expert” forum. In addition, the sexuality program offered two telephone consultations. Feasibility (regarding demand, acceptability, preliminary efficacy, and functionality) was evaluated with the website system data, telephone interviews, continuous online evaluations, and study-specific measures.ResultsFifteen participants completed four modules or more. Most of the program features were used and well accepted by these “committed users.” The web-based format enabled flexible use by participants with diverse needs. Preliminary efficacy was indicated by self-reported increased knowledge and skill in handling sexual problems and fertility distress. The website was easy to use and functioned well technically.ConclusionsThe present study indicated that this web-based intervention was feasible for adolescents and young adults with cancer. The effectiveness of the intervention in decreasing sexual problems and fertility distress will be tested in a population-based randomized controlled trial for adolescents and young adults with cancer.Trial registration: ISRCTN36621459.

Being in work or the equivalent is an important goal after allo-SCT and is used as an indicator of recovery. The aim was to elucidate occupational status and factors associated with work among SCT survivors. Adults in working age with a haematological disease (n = 177) were followed up within a median of 8 (range 28) years post allo-SCT. Predictors of not being in work at all or working part-time because of sick leave, disability pension or early old-age pension were analyzed using logistic regression analyses. At diagnosis, 82% of the participants were working full-time and 2% were on sick leave or old-age pension. At follow-up, 52% were working full-time, 27% were working part-time and 17% were on sick leave, disability pension or old-age pension. Not working at all was associated with multi-morbidity (P = 0.01) and poorer health (P = 0.00). Working part-time was associated with a higher age at diagnosis (P = 0.00), being a woman (P = 0.03), being born abroad (P = 0.03) and multi-morbidity (P = 0.00). In conclusion, the majority of survivors were in paid work at follow-up; however, a substantial number were not working or worked part-time.

The purpose was to study expectations concerning recovery-related changes in life, e.g. beliefs regarding future adjustment back to 'normal' life after curative cancer treatment, whether these expectations were met and their importance for both patients' and their spouses' quality of life and psychological distress. Sixty-two patients and 42 spouses took part in the study. Data on recovery-related expectations, measured using a study-specific questionnaire (RRE), on quality of life using EORTC-QLQ C-30 and on psychological distress using HADS, were collected directly after completion of treatment, four and 16 months later. Optimism was measured using LOT at the last follow-up. The results demonstrate that patients generally had higher recovery-related expectations than did their spouses, and their expectations were also fulfilled to a lesser degree at both follow-ups. However, the expectations, or whether these were met, were generally not associated with their quality of life or psychological distress. The few associations that were made indicated that fulfilled expectations meant higher quality of life and/or less distress. The participants' optimism was associated with both their quality of life and psychological distress. It is concluded that optimism influenced the participants' quality of life and psychological distress to a higher degree than did their recovery-related expectations.