Long-term effects on depression and anxiety of an internet-based stepped care intervention for patients with cancer and symptoms of depression and anxiety. The U-CARE AdultCan trial.

Background: Cancer is a serious disease that commonly causes significant psychological distress. The internet-based intervention (iCAN-DO), utilizing a stepped care approach for the treatment of anxiety and depression in individuals with cancer, has been shown to have favorable results for symptoms of depression at the primary endpoint, 10 months after randomization compared to standard care (SC). The aim of the present study was to evaluate the long-term effects of the intervention 18 and 24 months after randomization. Methods: Patients with breast, colorectal, or prostate cancer and a score > 7 on either of the Hospital Anxiety and Depression Scale (HADS) subscales (n = 245) were recruited to the study in conjunction with a regular hospital visit. They were randomized to access to the stepwise iCAN-DO intervention for 24 months or to SC. Step 1 of the intervention comprised psycho-educative online material. In Step 2, internet-based cognitive-behavioral therapy with individual online support from a therapist was added. Step 2 was offered to those who reported persistent anxiety or depression symptoms (>7 on HADS), also at 1, 4, and/or 7 months after randomization. Missing data were imputed using the last rank carried forward method and used for the main analyses according to the intention-to-treat approach. Effects sizes (Cohen's d), and minimally clinically important difference (MCID) were calculated. Linear mixed models were used to analyze intervention effects over time. Results: Symptoms of depression decreased significantly (p < 0.05) in the iCAN-DO group compared with the SC group from baseline to 18 months (d = 0.29), but not to 24 months (d = 0.27). Even though the average iCAN-DO group participant surpassed a MCID in symptoms of anxiety (>2 p) at both long-term follow-ups, the differences did not reach statistical significance, either at 18 months (p = 0.10) or 24 months (p = 0.09). Positive effects of iCAN-DO compared with the SC were also shown for some secondary HRQoL-outcomes; social functioning at 18 months (p = 0.02) and 24 months (p = 0.001), and sleep problems at 24 months (p = 0.01). Conclusion: A stepped-care internet-based intervention that has previously shown positive results for symptoms of depression at 10 months did show similar positive long-term effects also at 18 months. For symptoms of anxiety, no effect could be shown. The internet may provide an effective format for interventions to reduce symptoms of depression after cancer at patients' own choice of time, regardless of distance to a psycho-oncology clinic.

Conducting Digital Health Care Research: Document Analysis of Challenges Experienced During Intervention Development and Feasibility Study Setup of an Internet-Administered Intervention for Parents of Children Treated for Cancer.

BACKGROUND: The design and conduct of research to develop, test, and evaluate complex health care interventions is challenging. Although the existing literature describes key challenges associated with the design and conduct of definitive (evaluation) trials, there is a lack of information concerning specific challenges associated with the intervention development phase and setup of feasibility studies. In particular, the literature is scarce concerning the challenges associated with conducting digital health care research, such as research on internet-administered interventions and research using digital features to support the execution of study procedures (eg, recruitment, consent, retention, and data collection and management). This study is conducted in the context of the intervention development and feasibility study setup phases of an internet-administered, guided, low-intensity cognitive behavioral therapy-based intervention for parents of children previously treated for cancer. OBJECTIVE: The aim of this study is to explore the challenges experienced during the development phase of the internet-administered intervention and digital features to support the execution of the study procedures and a feasibility study setup. METHODS: To explore the key challenges experienced, we conducted a document analysis of written records from all study meetings held by the research team (meeting minutes) between June 7, 2018, and January 10, 2020, guided by a thematic analysis approach. Furthermore, discussion groups with members of the research team were held to develop a more detailed understanding of the key challenges experienced. Methods and results are reported in accordance with the relevant items from the Standards for Reporting Qualitative Research checklist. RESULTS: Six main themes were identified: decision-making and communication, expertise, external constraints, flexibility, planning and scheduling, and technical constraints. CONCLUSIONS: Significant challenges were experienced during the intervention development and setup phases of the feasibility study. Implications are discussed to inform future design, conduct, and planning of internet-administered intervention development and feasibility studies, especially within the context of digital health care research.

Commencement of and Retention in Web-Based Interventions and Response to Prompts and Reminders: Longitudinal Observational Study Based on Two Randomized Controlled Trials.

BACKGROUND: Web-based interventions are effective for several psychological problems. However, recruitment, adherence, and missing data are challenges when evaluating these interventions. OBJECTIVE: This study aimed to describe the use patterns during the commencement phase, possible retention patterns (continuation of data provision), and responses to prompts and reminders among participants in 2 randomized controlled trials (RCTs) evaluating web-based interventions. METHODS: Data on use patterns logged in 2 RCTs aiming to reduce symptoms of anxiety and depression among adult patients recently diagnosed with cancer (AdultCan RCT) and patients with a recent myocardial infarction (Heart RCT) were analyzed. The web-based intervention in the AdultCan trial consisted of unguided self-help and psychoeducation and that in the Heart trial consisted of therapist-supported cognitive behavioral therapy. In total, 2360 participants' use patterns at first log-in, including data collection at baseline (ie, commencement) and at 2 follow-ups, were analyzed. Both the intervention and comparison groups were analyzed. RESULTS: At commencement, 70.85% (909/1283) and 86.82% (935/1077) of the participants in AdultCan and Heart RCTs, respectively, logged in and completed baseline data collection after receiving a welcome email with log-in credentials. The median duration of the first log-in was 44 minutes and 38 minutes in AdultCan and Heart RCTs, respectively. Slightly less than half of the participants' first log-ins were completed outside standard office hours. More than 80% (92/114 and 103/111) of the participants in both trials explored the intervention within 2 weeks of being randomized to the treatment group, with a median duration of 7 minutes and 47 minutes in AdultCan and Heart RCTs, respectively. There was a significant association between intervention exploration time during the first 2 weeks and retention in the Heart trial but not in the AdultCan trial. However, the control group was most likely to retain and provide complete follow-up data. Across the 3 time points of data collection explored in this study, the proportion of participants responding to all questionnaires within 1 week from the prompt, without a reminder, varied between 35.45% (413/1165) and 66.3% (112/169). After 2 reminders, up to 97.6% (165/169) of the participants responded. CONCLUSIONS: Most participants in both RCTs completed the baseline questionnaires within 1 week of receiving the welcome email. Approximately half of them answered questions at baseline data collection outside office hours, suggesting that the time flexibility inherent in web-based interventions contributes to commencement and use. In contrast to what was expected, the intervention groups generally had lower completion rates than the comparison groups. About half of the participants completed the questionnaires without a reminder, but thereafter, reminders contributed to both baseline and follow-up retention, suggesting they were effective. Strategies to increase commencement of and retention in eHealth interventions are important for the future development of effective interventions and relevant research.

Study within a trial (SWAT) protocol. Investigating the effect of personalised versus non-personalised study invitations on recruitment: An embedded randomised controlled recruitment trial.

INTRODUCTION: Recruitment into clinical trials is a common challenge experienced by healthcare researchers. Currently, there is little evidence regarding strategies to improve recruitment into clinical trials. However, preliminary research suggests the personalisation of study invitation letters may increase recruitment rates. As such, there is a need to investigate the effectiveness of personalisation strategies on trial recruitment rates. This study within a trial (SWAT) will investigate the effect of personalised versus non-personalised study invitation letters on recruitment rates into the host trial ENGAGE, a feasibility study of an internet-administered, guided, Cognitive-Behavioural Therapy (CBT) based self-help intervention for parents of children previously treated for cancer. METHODS: An embedded randomised controlled trial (RCT) will investigate the effectiveness of a personalised study invitation letter including the potential participant's name and address compared with a standard, non-personalised letter without name or address, on participant recruitment rates into the ENGAGE study. The primary outcome is differences in the proportion of participants recruited, examined using logistic regression. Results will be reported as adjusted odds ratios with 95% confidence intervals. DISCUSSION: Even moderate effects of the personalisation of study invitation letters on recruitment rates could be of significant value by shortening study length, saving resources, and providing a faster answer to the clinical question posed by the study. This protocol can be used as a template for other researchers who wish to contribute to the evidence base for trial decision-making, by embedding a similar SWAT into their trial. TRIAL REGISTRATION: ISRCTN 57233429; ISRCTN 18404129; SWAT 112, Northern Ireland Hub for Trials Methodology Research SWAT repository (2018 OCT 1 1231).

Parents' needs of support following the loss of a child to cancer: a Swedish, prospective, longitudinal, multi-centre study.

Introduction: Parents' needs of support following the loss of a child to cancer and whether these needs are met are not fully known. This study aimed to describe parents' needs, opportunity, and benefit of support from healthcare professionals and significant others from shortly after, up to five years after bereavement.Material and methods: Data were collected at nine months (T5, n = 20), eighteen months (T6, n = 37), and five years after the child's death (T7, n = 38). Parents answered questions via telephone about need, opportunity, and benefit of talking to psychologists, social workers, partners, and friends. Needs were examined in relation to parent and child characteristics, including sex, age, and parent posttraumatic stress symptoms (PTSS).Results: The proportion reporting a need of support from psychologists varied from 56% and 46% at T5 to 20% and 6% at T7 (mothers and fathers, respectively). All mothers and 90% of fathers reported a need of support from social workers at T5. At T7, the corresponding percentages were 30% and 6%. More mothers than fathers reported a need of support from friends at T7 (p = .001). The proportion reporting a need of support from psychologists, social workers, and friends decreased over time (all p ≤ .050). Parents reporting a higher level of PTSS were more likely to report a need of support from social workers at T6 (p = .040) and from psychologists (p = .011) and social workers (p = .012) at T7. Opportunities for support from healthcare professionals varied, most reported need of and opportunity for support from significant others. Almost all reported benefit from received support.Conclusion: Bereaved parents need and benefit of support from healthcare professionals and significant others. Results show a need for improved access to psychosocial services, even at five years post bereavement. Large-scale studies are needed to better understand the associations between parent and child characteristics and support needs.

Reaching skills of infants born very preterm predict neurodevelopment at 2.5 years.

The purpose was to investigate associations between quality of reaching for moving objects at 8 months corrected age and neurodevelopment at 2.5 years in children born very preterm (gestational age (GA), 24-31 weeks). Thirtysix infants were assessed while reaching for moving objects. The movements were recorded by a 3D motion capture system. Reaching parameters included aiming, relative length of the reach, number of movement units, proportion of bimanual coupled reaches and number of hits. Neurodevelopment was assessed at 2.5 years by the Bayley Scales of Infant Development III. There were strong associations between infant reaching kinematics and neurodevelopment of cognition and language but the patterns differed: in children born extremely preterm (GA < 28 weeks), planning and control of reaching was strongly related to outcome, while in children born very preterm (GA 28-31 weeks) number of hits and bimanual strategies were of greater relevance. In conclusion, for extremely preterm infants, basic problems on how motion information is incorporated with action planning prevail, while in very preterm infants the coordination of bimanual reaches is more at the focus. We conclude that the results reflect GA related differences in neural vulnerability and that early motor coordination deficits have a cascading effect on neurodevelopment.

Attitudes and Preferences Toward a Hypothetical Trial of an Internet-Administered Psychological Intervention for Parents of Children Treated for Cancer: Web-Based Survey.

BACKGROUND: Clinical trials are often challenged with issues of recruitment and retention. Little is known concerning general attitudes and preferences toward trial design and willingness to participate among parents of children treated for cancer. Furthermore, willingness to participate in internet-administered psychological interventions remains unexplored. In this study, we examined attitudes and preferences of the population regarding study procedures for a hypothetical trial of an internet-administered psychological intervention. In addition, differences in the response rate between modes of study invitation and willingness to engage in internet-administered interventions were examined. OBJECTIVE: The primary objective of this study was to examine attitudes and preferences toward participating in an internet-administrated psychological intervention. The secondary objective was to examine the response rates and help-seeking behavior among parents of children treated for cancer. METHODS: A cross-sectional, Web-based survey was conducted with parents of children who had completed cancer treatment. This Web-based survey examined self-reported emotional distress, prior help-seeking and receipt of psychological support, past research participation, attitudes toward research, preferences concerning recruitment procedures, and attitudes toward different types of trial design. RESULTS: Of all the parents invited, 32.0% (112/350) completed the survey, with no difference in response rate between modes of study invitation (χ21=0.6, P=.45). The majority (80/112, 71.4%) of parents responded that they had experienced past emotional distress. Responses indicated high (56/112, 50.0%) or somewhat high trust in research (51/112, 45.5%), and the majority of parents would accept, or maybe accept, internet-administered psychological support if offered (83/112, 74.1%). In addition, responses showed a preference for postal study invitation letters (86/112, 76.8%), sent by a researcher (84/112, 75.0%) with additional study information provided on the Web via text (81/112, 72.3%) and video (66/112, 58.9%). Overall, parents responded that trials utilizing a waiting list control, active alternative treatment control, or a patient-preference design were acceptable. CONCLUSIONS: Parents of children treated for cancer appear willing to participate in trials examining internet-administered psychological support. Findings of this study will inform the design of a feasibility trial examining internet-administered psychological support for the population.

Study protocol for a feasibility study of an internet-administered, guided, CBT-based, self-help intervention (ENGAGE) for parents of children previously treated for cancer.

INTRODUCTION: A subgroup of parents of children previously treated for cancer report long-term psychological distress after end of treatment. However, needs for psychological support are commonly unmet and there is a lack of evidence-based treatments tailored to the specific needs of this population. An internet-administered, guided, cognitive-behavioural therapy-based, self-help intervention (ENGAGE) for parents of children previously treated for cancer may provide a solution. The aim is to examine the feasibility and acceptability of the intervention ENGAGE and the study procedures for a future controlled trial. METHODS AND ANALYSIS: The study has an uncontrolled within-group design with an embedded qualitative and quantitative process evaluation. Potential participants are parents of children previously treated for cancer, living in Sweden, recruited via their child's personal identification number (via the Swedish Childhood Cancer Registry and the Swedish Tax Agency). Parents are invited randomly with information packs sent to home addresses. Further interest in participating can be registered via information on relevant websites. The study aims to recruit 50 parents who will receive the intervention ENGAGE which is designed to be delivered over a 10-week period, and comprises one introductory chapter followed by up to 10 intervention modules addressing key concerns identified for the population. Consistent with feasibility study objectives, primary outcomes relate to recruitment, attrition, data collection, study resources, intervention delivery and acceptability. Clinical outcomes (post-traumatic stress, depression, anxiety, fear of cancer recurrence, psychological inflexibility and experiential avoidance, depressed inactivity, fatigue, quality of life and self-compassion) will be measured at baseline, post-treatment (12 weeks) and 6-month follow-up. ETHICS AND DISSEMINATION: The Regional Ethical Review Board in Uppsala, Sweden has granted approval for the study (Dnr: 2017/527). Results will be disseminated to relevant healthcare and patient communities, in peer-reviewed and popular science journals, and at scientific and clinical conferences. TRIAL REGISTRATION NUMBER: ISRCTN57233429; Pre-results.

Development of an Internet-Administered Cognitive Behavior Therapy Program (ENGAGE) for Parents of Children Previously Treated for Cancer: Participatory Action Research Approach.

BACKGROUND: Parenting a child through cancer is a distressing experience, and a subgroup of parents report negative long-term psychological consequences years after treatment completion. However, there is a lack of evidence-based psychological interventions for parents who experience distress in relation to a child's cancer disease after end of treatment. OBJECTIVE: One aim of this study was to develop an internet-administered, cognitive behavior therapy-based, psychological, guided, self-help intervention (ENGAGE) for parents of children previously treated for cancer. Another aim was to identify acceptable procedures for future feasibility and efficacy studies testing and evaluating the intervention. METHODS: Participatory action research methodology was used. The study included face-to-face workshops and related Web-based exercises. A total of 6 parents (4 mothers, 2 fathers) of children previously treated for cancer were involved as parent research partners. Moreover, 2 clinical psychologists were involved as expert research partners. Research partners and research group members worked collaboratively throughout the study. Data were analyzed iteratively using written summaries of the workshops and Web-based exercises parallel to data collection. RESULTS: A 10-week, internet-administered, cognitive behavior therapy-based, psychological, guided, self-help intervention (ENGAGE) was developed in collaboration with parent research partners and expert research partners. The content of the intervention, mode and frequency of e-therapist support, and the individualized approach for feedback were modified based on the research partner input. Shared solutions were reached regarding the type and timing of support from an e-therapist (eg, initial video or telephone call, multiple methods of e-therapist contact), duration and timing of intervention (eg, 10 weeks, 30-min assessments), and the removal of unnecessary support functions (eg, removal of chat and forum functions). Preferences for study procedures in future studies testing and evaluating the intervention were discussed; consensus was not reached for all aspects. CONCLUSIONS: To the best of our knowledge, this study is the first use of a participatory action research approach to develop a psychological intervention for parents of children previously treated for cancer and to identify acceptable study procedures. Involvement of parents with lived experience was vital in the development of a potentially relevant and acceptable intervention for this population.

Perceptions of support among Swedish parents of children after end of successful cancer treatment: a prospective, longitudinal study.

INTRODUCTION: Most children survive childhood cancer, however parenting a child diagnosed with cancer is a major challenge. The main aim of the current study was to describe Swedish parents' need, opportunity and benefit of support from healthcare professionals and significant others after end of a child's successful cancer treatment. MATERIAL AND METHODS: Data was collected from approximately one week after end of successful treatment/six months after transplantation (T4, n = 212) up to five years thereafter (T7, n = 137). Parents answered questions via telephone about need, opportunity and benefit of talking to psychologists, social workers, partners and friends. RESULTS: The proportion reporting need of support from healthcare professionals varied between 73% (mothers' need of support from social workers, T4) and 7% (fathers' need of support from psychologists/social workers, T7). Need of support from significant others varied between 99% (mothers' and fathers' need of support from partners, T4) and 27% (fathers' need of support from friends, T7). The proportion reporting need of support decreased over time (p < .001), no decrease occurred from three months after end of treatment/nine months after transplantation (T5) to one year after end of treatment/18 months after transplantation (T6). More mothers than fathers reported need of support from friends at T5 (p < .001) and T7 (p < .05) and from psychologists at T7 (p < .05). Opportunities for support from healthcare professionals varied, most reported opportunity for support from significant others. Almost all reported benefit from received support. CONCLUSION: A declining number reports a need of support over time, however subgroups report an unmet need and almost every parent perceive support from healthcare professionals as beneficial. More parents should get access to psychosocial support services after end of a child's cancer treatment/transplantation.

Fifteen Challenges in Establishing a Multidisciplinary Research Program on eHealth Research in a University Setting: A Case Study.

BACKGROUND: U-CARE is a multidisciplinary eHealth research program that involves the disciplines of caring science, clinical psychology, health economics, information systems, and medical science. It was set up from scratch in a university setting in 2010, funded by a governmental initiative. While establishing the research program, many challenges were faced. Systematic documentation of experiences from establishing new research environments is scarce. OBJECTIVE: The aim of this paper was to describe the challenges of establishing a publicly funded multidisciplinary eHealth research environment. METHODS: Researchers involved in developing the research program U-CARE identified challenges in the formal documentation and by reflecting on their experience of developing the program. The authors discussed the content and organization of challenges into themes until consensus was reached. RESULTS: The authors identified 15 major challenges, some general to establishing a new research environment and some specific for multidisciplinary eHealth programs. The challenges were organized into 6 themes: Organization, Communication, Implementation, Legislation, Software development, and Multidisciplinarity. CONCLUSIONS: Several challenges were faced during the development of the program and several accomplishments were made. By sharing our experience, we hope to help other research groups embarking on a similar journey to be prepared for some of the challenges they are likely to face on their way.

Guided internet-administered self-help to reduce symptoms of anxiety and depression among adolescents and young adults diagnosed with cancer during adolescence (U-CARE: YoungCan): a study protocol for a feasibility trial.

INTRODUCTION: A subgroup of adolescents and young adults diagnosed with cancer during adolescence reports elevated levels of anxiety and depressive symptoms and unmet needs for psychological support. Evidence-based psychological treatments tailored for this population are lacking. This protocol describes a feasibility study of a guided-internet-administered self-help programme (YoungCan) primarily targeting symptoms of anxiety and depression among young persons diagnosed with cancer during adolescence and of the planned study procedures for a future controlled trial. METHODS/ANALYSIS: The study is an uncontrolled feasibility trial with a pre-post and 3-month follow-up design. Potential participants aged 15-25 years, diagnosed with cancer during adolescence, will be identified via the Swedish Childhood Cancer Registry. 30 participants will be included. Participants will receive YoungCan, a 12-week therapist-guided, internet-administered self-help programme consisting primarily of cognitive-behavioural therapy organised into individually assigned modules targeting depressive symptoms, worry and anxiety, body dissatisfaction and post-traumatic stress. Interactive peer support and psychoeducative functions are also available. Feasibility outcomes include: recruitment and eligibility criteria; data collection; attrition; resources needed to complete the study and programme; safety procedures; participants' and therapists' adherence to the programme; and participants' acceptability of the programme and study methodology. Additionally, mechanisms of impact will be explored and data regarding symptoms of anxiety, depression, post-traumatic stress, body dissatisfaction, reactions to social interactions, quality of life, axis I diagnoses according to the Mini International Neuropsychiatric Interview and healthcare service use will be collected. Exploratory analyses of changes in targeted outcomes will be conducted. ETHICS/DISSEMINATION: This feasibility protocol was approved by the Regional Ethical Review Board in Uppsala, Sweden (ref: 2016/210). Findings will be disseminated to relevant research, clinical, health service and patient communities through publications in peer-reviewed and popular science journals and presentations at scientific and clinical conferences. TRIAL REGISTRATION NUMBER: ISRCTN97835363.

Impact of a child's cancer disease on parents' everyday life: a longitudinal study from Sweden.

BACKGROUND: A child's cancer disease may disrupt the daily life of the affected family for a long period. The aim was to describe restrictions on parents' leisure activities and work/studies during and after the child's treatment. METHODS: This study used data from a cohort of mothers and fathers (n = 246) of children diagnosed with cancer. Data was collected five times from two months after diagnosis to one year after end of treatment. Reports of restrictions were evaluated over time, between mothers and fathers, and in relation to parent-reported child symptom burden (The Memorial Symptom Assessment Scale) and partial post-traumatic stress disorder (PTSD) (The PTSD Checklist-Civilian Version). RESULTS: Two (51%) and four (45%) months after diagnosis, about half reported that their leisure activities were restricted at least some of the time. Corresponding percentages for restrictions on work/studies were 84% and 77%. One year after end of treatment, the great majority reported that their leisure activities (91%) and/or work/studies (76%) were never/seldom restricted. During treatment, more mothers than fathers reported restrictions on work/studies all/most of the time. After end of treatment, gender was only related to reports of restrictions among parents not reporting partial PTSD. More parents who reported being restricted all/most of the time also reported partial PTSD and/or a greater symptom burden for the child. CONCLUSION: Parents report frequent restrictions on everyday life during treatment. One year after end of treatment, parents report only a limited impact of the child's cancer on their leisure activities and work/studies. More parents who report restrictions also report partial PTSD and/or a greater child symptom burden. The effect of gender on restrictions varies depending on reports of partial PTSD. Future studies of gender differences regarding the impact of a child's cancer on parents' everyday life should thus consider mothers' and fathers' level of psychological distress.

Development of health-related quality of life and symptoms of anxiety and depression among persons diagnosed with cancer during adolescence: a 10-year follow-up study.

OBJECTIVE: The main aim was to investigate the development of health-related quality of life (HRQOL) and symptoms of anxiety and depression in a cohort diagnosed with cancer during adolescence from shortly after up to 10 years after diagnosis. METHODS: Participants (n = 61) completed the SF-36 and the HADS shortly; six, 12, and 18 months; and two, three, four, and 10 years (n = 28) after diagnosis. Polynomial change trajectories were used to model development. RESULTS: Polynomial change trajectories showed an initial increase which abated over time into a decrease which abated over time for the SF-36 subscales Mental Health and Vitality; an initial decline which abated over time into an increase for HADS anxiety; and an initial decline which abated over time into an increase which abated over time for HADS depression. The SF-36 mental component summary showed no change from two to 10 years after diagnosis whereas the SF-36 physical component summary showed an increase from two years after diagnosis which declined over time. Ten years after diagnosis 29% reported possible anxiety. CONCLUSIONS: Development of HRQOL and symptoms of anxiety and depression appears to be non-linear among persons diagnosed with cancer during adolescence. Well into permanent survivorship an increase in symptoms of anxiety is shown and approximately a third of the participants report possible anxiety. The findings indicate the need for: studies designed to pinpoint the times of highest psychological risk, clinical follow-up focusing on psychological problems, and development of effective psychological interventions for survivors of adolescent cancer. © 2015 The Authors. Psycho-Oncology published by John Wiley & Sons Ltd.

Long-term positive and negative psychological late effects for parents of childhood cancer survivors: a systematic review.

Increasing survival rates in childhood cancer have yielded a growing population of parents of childhood cancer survivors (CCSs). This systematic review compiles the literature on positive and negative long-term psychological late effects for parents of CCSs, reported at least five years after the child's diagnosis and/or two years after the end of the child's treatment. Systematic searches were made in the databases CINAHL, EMBASE, PsycINFO, and PubMed. Fifteen studies, published between 1988 and 2010, from 12 projects were included. Thirteen studies used quantitative methodology, one quantitative and qualitative methodology, and one qualitative methodology. A total of 1045 parents participated in the reviewed studies. Mean scores were within normal ranges for general psychological distress, coping, and family functioning. However, a substantial subgroup reported a clinical level of general psychological distress, and 21-44% reported a severe level of posttraumatic stress symptoms. Worry, disease-related thoughts and feelings, marital strains, as well as posttraumatic growth was reported. Several factors were associated with the long-term late effects, such as parents' maladaptive coping during earlier stages of the childs disease trajectory and children's current poor adjustment. Quality assessments of reviewed studies and clinical implications of findings are discussed and recommendations for future research are presented.

The Origin and Impact of Ideals in eHealth Research: Experiences From the U-CARE Research Environment.

BACKGROUND: The prevalence of information technology (IT) in society is a foundation for new modes of interaction between patients and health specialists. IT plays an important role in the renewal of care. Several countries have incorporated eHealth plans into their national health strategies. Part of the eHealth evolution concerns Internet psychological treatment and psychosocial care. These interventions are complex to design and evaluate due to legal, ethical, organizational, technical, and methodological challenges. OBJECTIVE: The objective of our study was to seek to make explicit contributions to the understanding of ideals in eHealth research, and illuminate their implications for establishing an effective research environment. Our analysis draws from three years of experience in establishing an eHealth research environment, and the literature. METHODS: We worked inductively to characterize challenging research ideals, and their origins, in our environment. Thereafter, we made a selective search of the literature to scrutinize and illuminate each ideal and it's implications. RESULTS: In this work, we propose a structured approach to address ideals in eHealth research. The scrutinized ideals are accountability, innovation, rigor, relevance, and sustainability. The approach supports researchers to systematically understand the ideals, their origin, and to manage their implications within an eHealth research environment. CONCLUSIONS: The complexity of eHealth research causes a need for sustainable, multi-disciplinary research environments. There is a need for a structured approach to organize eHealth research. The proposed approach helps to systematically scrutinize ideals, thus promoting high quality research.

Negative and positive consequences of adolescent cancer 10 years after diagnosis: an interview-based longitudinal study in Sweden.

OBJECTIVE: The aim of this study was to provide insight into survivor-reported negative and positive consequences of cancer during adolescence 10 years after diagnosis and compare these with consequences reported 3 and 4 years after diagnosis. METHODS: Three, 4, and 10 years after diagnosis, survivors of adolescent cancer were interviewed about negative and positive consequences due to their cancer experience. Manifest content analysis was used to identify categories of reported consequences. Categories of consequences 10 years after diagnosis were compared with consequences reported 3 and 4 years after diagnosis. RESULTS: Seven categories of negative consequences were identified: bodily concerns, existential thoughts about loss and life (new at 10 years), psychological problems, difficulties interacting with others, health worries (new), fertility concerns (new), and frustrations about health care (new); and six categories of positive consequences: positive view of life, positive view of self, compassion for others (new), close relationships, gained knowledge about disease and health care, and financial gains. Consistent with previous time points, bodily concerns were reported most often. The majority of survivors (n = 22) reported both negative and positive consequences of their former disease. Few reported only negative (n = 2) or only positive consequences (n = 4). CONCLUSIONS: Ten years after diagnosis, most survivors reported both negative and positive consequences. New themes, relevant to young adulthood and long-term survival, were identified. Health care professionals treating young adult survivors may anticipate and address problems regarding physical health, fertility, and health care but may also reinforce positive affect by addressing survivors' positive views of life, sense of self, and close relationships.

Development of smooth pursuit eye movements in very preterm born infants: 3. Association with perinatal risk factors.

AIM: To investigate the association between perinatal risk factors and neonatal complications and early oculo-motor development in very preterm infants. METHODS: Perinatal risk factors were identified, and the potential association with early oculo-motor development was evaluated by measuring smooth pursuit eye movements (SP) at 2 and 4 months' corrected age (CA) in a population of very preterm infants born in Uppsala County 2004-2007 (n = 113). RESULTS: Among the 15 tested factors, eight showed significant association in univariate analysis with lower levels of SP at 4 months' CA, namely administration of prenatal corticosteroids, gestational age, birthweight, bronchopulmonary dysplasia, retinopathy of prematurity, periventricular leukomalacia, intraventricular haemorrhage >grade 2, and persistent ductus arteriosus. At 2 months' CA, only retinopathy of prematurity >stage 2 was associated with lower levels of SP. When all factors significant in the univariate tests were included in multiple regressions aimed to assess each factor's independent relation to SP, periventricular leukomalacia was the only significant independent factor. When adding 2-5 of the significant factors using multiple regression analysis, the levels of SP became lower. CONCLUSION: Perinatal risk factors were associated with lower levels of SP. This could be interpreted as delayed or disturbed development of normal oculomotor ability.

Development of smooth pursuit eye movements in very prematurely born infants: 2. The low-risk subgroup.

AIM: To investigate the impact of premature birth on visual tracking in a group of 37 infants, born before the 32nd gestational weeks (mean 29 + 6 weeks) and diagnosed as being without major neonatal complications. This paper is a part of the LOVIS study (Strand Brodd, Ewald, Grönqvist, Holmström, Strömberg, Von Hofsten, et al. Acta Pediatrica, 2011). METHODS: At 2 and 4 months corrected age, eye and head movements were measured when the infant tracked a moving object. The eye movements were analysed in terms of smooth pursuit and saccades (Vision Res, 37, 1997, 1799; Exp Brain Res, 146, 2002, 257). Accuracy of gaze, proportion of smooth pursuit, head movements and saccades were calculated. RESULTS: Between 2 and 4 months of age, all infants improved their ability to smoothly pursue a moving object. However, at both occasions, the preterm infants had less proportion smooth pursuit than the full-term infants. The groups did not differ with respect to gaze and head movements, but the saccade frequency was higher for the very preterms in some of the conditions. CONCLUSION: The development of smooth pursuit in the low-risk preterm infant group was strongly delayed compared to typically developed infants. Thus, the 2 months or more extra visual experience did not have a distinguishable positive effect on visuo-motor development as expressed in smooth pursuit.

Development of smooth pursuit eye movements in very preterm infants: 1. General aspects.

AIM: To investigate early oculo-motor development in a population-based cohort of very preterm infants. METHODS: Early oculo-motor development was prospectively studied by measuring smooth pursuit eye movements at 2 and 4 months corrected age in a population of very preterm infants born in Uppsala County 2004-2007. Eighty-one preterm infants were studied, and 32 healthy term infants constituted the control group. RESULTS: The study group consisted of infants with a mean gestational age of 28 + 5 weeks. At 2 and 4 months corrected age, infants born very preterm showed lower gain (p < 0.001) and proportion of smooth pursuit eye movements (p < 0.001) compared to the control group. The boys showed higher gain of smooth pursuit eye movements at both 2 and 4 months corrected age, compared to girls. CONCLUSIONS: Oculo-motor development measured by smooth pursuit eye movements is delayed in very preterm infants at 2 and 4 months corrected age. This might be a risk factor or early indicator of later perceptual and behavioural impairment.