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Background:Health care is shifting toward a person-centered care (PCC) approach. For implementation of PCC, there may be a special role for nurse practitioners (NPs).Purpose:The aim of this study was to explore the patient-perceived levels of and needs for of PCC in inflammatory arthritis patients who visited the NP at the outpatient clinic of an academic hospital in the Netherlands.Methods:A cross-sectional study was performed. Disease characteristics were inventoried from the patient records. Patients filled out the PCCoc/rheum instrument, an instrument to measure patient perceived PCC, and a questionnaire based on the 14 life areas of the Self-Management Web, extended with areas including pain, fatigue, and night's rest. Participants were asked which life areas caused problems, and whether these problems were discussed. Mean values were calculated for normally distributed data and medians for nonnormally distributed data.Results:Most of the patients had well-controlled disease (86.1%). The mean score of the PCCoc/rheum was 55.3 (SD 8.1). Patients experienced most problems in life areas fatigue (37.3%) and pain (35.3%), these were also the life areas that were most often addressed at consultation. The life areas that gave problems and that were least addressed during consultation were intimate relationships & sexuality (66.7%) and household chores (58.8%).Conclusions:Despite an overall high level of patient perceived PCC delivered by NPs, patient with low disease activity frequently reported problems in life areas not addressed at consultation.Implications for practice:Implementation of the Self-Management Web and changing the focus of NP consultations may help to improve accommodating individual patient needs.

Background Complex survivorship cancer care requires nurse-led interventions. Therefore, a nurse-led patient navigation intervention was developed in which trained cancer nurses gave advice and referred to other professionals during the process of recovery and rehabilitation of hematopoietic stem cell transplantation (HSCT) patients.Objective The aim of this study was to understand the nature and effect of this nurse-led information and referral intervention.Methods Of the 199 included patients in the intervention group, 75 completed the quality of life, quality of care, self-efficacy, and self-management behavior questionnaires at baseline and at 6 and 12 months after HSCT. A historical control group of 62 patients completed the same questionnaires 12 months after HSCT. In addition, patients’ experiences with the intervention were evaluated in 2 focus groups.Results Patients emphasized the holistic approach of the cancer nurses and the opportunity to discuss psychosocial domains of life. Within the intervention group, a statistically significant effect on quality of life was demonstrated over time. The differences in quality of life, self-efficacy, and self-management were not significant between the intervention group and control group.Conclusion The holistic focus of this nurse-led intervention proved to be acceptable to the HSCT patients and promising in supporting the (complex) challenges that these patients face during their process of recovery and rehabilitation.Implications for Practice Nurse-led patient navigation interventions with a holistic approach when included in the daily practice of complex survivorship cancer care can support HSCT patients’ information and referral needs during their rehabilitation.

Background The supportive needs for head and neck cancer (HNC) patients during the vulnerable period after treatment are not always met. Therefore, more professional support regarding physical, social, and psychological care as well as lifestyle is recommended. Objective This study is an evaluation of a nurse-led aftercare intervention to support patients recovering from HNC treatment. Methods Intervention group (IG) participants received 2 extra consultations from a nurse practitioner 3 and 9 months after treatment of HNC. A holistic conversational tool, the Self-Management Web, was developed to guide the nurse through the conversation. Primary outcomes were health-related quality of life (HRQoL) and quality of patient-centered care. A secondary outcome was self-management skills. Results Twenty-seven patients were included in the IG, and 28 were included in the control group. Differences in HRQoL and self-management between the IG and the control group were not statistically significant. For the IG, all domains of the Self-Management Web were perceived important and addressed by the nurse practitioner. Conclusion This holistic nurse-led aftercare intervention was highly appreciated by HNC patients. Although the intervention met the need for support in recovery after treatment, it did not improve HRQoL or self-management skills. Implications of Practice For both nurses and patients, the intervention is feasible and acceptable in daily practice. Self-management support for patients after their cancer treatment is of added value and has potential to improve the quality of regular follow-up care.

Het ontbreekt nog aan noodzakelijke kennis over factoren die samenhangen met vitaliteit bij ervaren verpleegkundigen en verzorgenden. Dergelijke knowhow zou de kans vergroten dat oudere zorgprofessionals goed toegerust en met plezier aan het werk blijven.

Background To support effective self-management after kidney transplantation, a holistic nurse-led self-management support intervention was developed using the Intervention Mapping approach. The primary aim was to evaluate the feasibility, acceptability and fidelity of the intervention for kidney transplant recipients and professionals. The secondary aim was to explore preliminary effects on outcomes. Methods A pilot study was conducted in 2015–2017 to evaluate the intervention. Nurse Practitioners (NP) guided recipients in assessing 14 life areas using the Self-Management Web. Participants were supported in developing self-regulation skills which can be applied to self-management of the illness. Strategies included goal setting, action planning, and promotion of motivation and self-efficacy. Adult recipients from an outpatient clinic of a Dutch University Hospital who underwent their transplant at least 1 month ago, were invited to participate. NPs, nephrologists and recipients were interviewed to assess feasibility, fidelity and implementation experience. Consultations were videoed and analysed to assess fidelity. To assess the preliminary effects, the intervention group completed baseline (T0) and follow-up (T1) questionnaires on self-management behavior, self-efficacy, quality of life and quality of care. A historical control group of kidney transplant recipients completed the same questionnaires at T1. Results Twenty-seven recipients agreed to participate in the intervention group, of which 24 completed the intervention and 16 completed baseline and follow-up surveys. The control group consisted of 33 recipients. Professionals and recipients appraised the open, holistic focus of the intervention as a welcome addition to standard care and felt that this helped to build a relationship of trust. Recipients also felt they became more competent in problem-solving skills. The within-group analysis showed no significant increase in patients’ self-management skills. The between-groups analysis showed significantly higher medication adherence among the intervention group (P = 0.03; G = 0.81). The within-groups analysis showed a significantly higher perceived quality of care (P = 0.02) in the intervention group. Conclusion This holistic nurse-led self-management support intervention was found to be feasible and acceptable by professionals and recipients alike. This pilot had a small sample therefore further research is needed into the potential effects on self-management behavior and well-being of transplant recipients. ISRCTN Trial Registry: ISRCTN15057632 (registered retrospectively on 20-07-2018). Electronic supplementary material The online version of this article (10.1186/s12882-019-1300-7) contains supplementary material, which is available to authorized users.

The aim of the study was to gain insight into use of a new board game (SeCZ TaLK) to facilitate discussing sexual health with adolescents with chronic conditions in healthcare and special education, and to establish impeding and facilitating factors for using the game. In a cross-sectional mixed-methods study, the use of SeCZ TaLK in daily practice was evaluated through a web-based survey among 151 professionals in health care and education. Initially, 336 professionals had obtained the game 12–18 months earlier. In addition, twelve professionals were interviewed individually. Results showed that the actual use of SeCZ TaLK was associated with a positive attitude towards discussing sexuality, a high perceived feasibility of the game, own motivation and skills, and correspondence with work routines. The presence of preconditions (such as time to play and staffing capacity), participant’s recruitment for game sessions and the professional environment were non-significant factors. Professionals appreciated the board game SeCZ TaLK but actual use depended on own motivation and skills and correspondence with work routines. To enhance the use of the board game, management should prioritize discussing sexuality and support the professionals in developing relevant skills.

Background: Optimal self-management in kidney transplant recipients is essential for patient and graft survival, reducing comorbidity and health care costs while improving the quality of life. However, there are few effective interventions aimed at providing self-management support after kidney transplantation. Objective: This study aims to systematically develop a nurse-led, self-management (support) intervention for kidney transplant recipients. Methods: The Intervention Mapping protocol was used to develop an intervention that incorporates kidney transplant recipients’ and nurses’ needs, and theories as well as evidence-based methods. The needs of recipients and nurses were assessed by reviewing the literature, conducting focus groups, individual interviews, and observations (step 1). Based on the needs assessment, Self-Regulation Theory, and the “5A’s” model, change objectives were formulated (step 2). Evidence-based methods to achieve these objectives were selected and subsequently translated into practical implementation strategies (step 3). Then, program materials and protocols were developed accordingly (step 4). The implementation to test the feasibility and acceptability was scheduled for 2015-2017 (step 5). The last step of Intervention Mapping, evaluation of the intervention, falls outside the scope of this paper (step 6). Results: The intervention was developed to optimize self-management (support) after kidney transplantation and targeted both kidney transplant recipients and nurse practitioners who delivered the intervention. The intervention was clustered into four 15-minute sessions that were combined with regular appointments at the outpatient clinic. Nurses received a training syllabus and were trained in communication techniques based on the principles of Solution-Focused Brief Therapy and Motivational Interviewing; this entailed guiding the patients to generate their own goals and solutions and focus on strengths and successes. Kidney transplant recipients were encouraged to assess self-management challenges using the Self-Management Web and subsequently develop specific goals, action plans, and pursuit skills to solve these challenges. Conclusions: The Intervention Mapping protocol provided a rigorous framework to systematically develop a self-management intervention in which nurses and kidney transplant recipients’ needs, evidence-based methods, and theories were integrated. International Registered Report Identifier (IRRID): DERR1-10.2196/11856 JMIR Res Protoc 2019;8(3):e11856 http://dx.doi.org/10.2196/11856

Introduction The consequences of having epilepsy seriously hamper the development of autonomy for youth with epilepsy (YWE) and limit their social participation. This study was designed to provide insight into the impact of epilepsy on autonomy and empowerment and to evaluate the use of the Skills for Growing Up (SGU-Epilepsy) communication tool in pediatric epileptic care. Methods A mixed methods design was used to examine the impact of epilepsy on autonomy and empowerment and to evaluate the feasibility and use of the SGU-Epilepsy. Six focus groups with YWE and their parents were organized (N = 27), and the benefits of the SGU-Epilepsy were evaluated (N = 72). Results Youth with epilepsy struggled with social participation. Beliefs of YWE and their parents on managing daily life and taking medication were not always similar. Parents worried about the passive attitude of YWE, but autonomy of YWE seemed to be constrained by parents. The SGU-Epilepsy seemed to be feasible. It facilitated the communication on development and empowerment although it was sometimes confronting for parents. Not all YWE were motivated to use and discuss the tool. In the evaluation, no differences in perceived autonomy and empowerment between YWE who used SGU-Epilepsy and received usual care appeared. Conclusion On the short-term, a beneficial effect of using the SGU-Epilepsy on autonomy and empowerment for YWE and their parents was not shown. The SGU-Epilepsy seemed to be a feasible instrument, however, to address nonmedical issues during pediatric consultations.

After publication of this supplement [1], it was brought to our attention that in abstract 11, the author affiliation No. 1 is incorrect. It should be ‘Rotterdam University of Applied Sciences, Research Centre Innovations in Care, Rotterdam, The Netherlands’, but not ‘Department of Healthcare & Welfare, NHL University of Applied Sciences, Leeuwarden, the Netherlands’.

The objective of this study was to identify determinants of professionals’ intention to use the new board game SeCZ TaLK to facilitate sexual health discussions with young people with chronic health conditions and disabilities, and to gauge whether intention led to actual use. A cross-sectional web-based survey of 336 professionals before they received the game sought to measure their intention to use SeCZ TaLK, their attitudes towards discussing sexuality, social professional environment, self-efficacy, opinion on the feasibility of using the game and experience discussing sexuality. Actual use of SeCZ TaLK was assessed at follow-up (N = 105). Professionals with higher self-efficacy and more experience in discussing sexual health were more likely to intend to use the game. At follow-up, intention to use explained 21% of the variance in actual use. SeCZ TaLK fits easily into the daily practice of professionals working in assisted-living and day-care facilities; other professionals experienced greater diff...

To explore associations between adolescents' perception of their readiness to transfer to adult care and socio-demographic and disease-related characteristics, effect of the condition, self-management ability, and attitude toward transition.A cross-sectional study was conducted in a Dutch university hospital, where all adolescents (12-19 years) with somatic chronic conditions (n = 3,648) were invited to participate in a web-based questionnaire. Invitations were issued to those without an intellectual disability and who had been under treatment for at least 3 years.In all, 30% (n = 1,087) of the adolescents responded; 954 assessed their perception of readiness for transfer. The majority (56%) felt that they were ready for transfer. Logistic regression analyses showed that 48% of the total variance in transfer readiness (TR) could be explained. Feeling more self-efficacious in skills for independent hospital visits and a greater perceived independence during consultations were found to be most strongly associated with being ready to transfer. Higher TR was associated with older age, but age did not prove to be the most important explaining variable. Adolescents with a more positive attitude toward transition and those who reported more discussions related to future transfer also felt more ready. Disease-related factors and effect of the condition including quality of life were only weakly associated with higher TR.Adolescents' attitude to transition and their level of self-efficacy in managing self-care seem to be the keystones to TR. This study suggests that individual transition plans and readiness assessments might prove to be beneficial. Strengthening adolescents' independence and self-management competencies, combined with early preparation and repeated discussions on transition, seem to be useful strategies to increase adolescents' readiness for transfer to adult care.

Transitie in zorg van jongeren met chronische aandoeningen is een grote uitdaging voor de kindergeneeskunde, maar in Nederland is nog weinig bekend over hoe voorbereiding op transitie, overdracht en samenwerking met de volwassenenzorg plaatsvindt. Doel van dit onderzoek was inzicht te krijgen in de stand van zaken ten aanzien van transitie van jongeren en in de gevoelde noodzaak van verbetering van adolescentenzorg bij zorgverleners. Cross-sectioneel, beschrijvend onderzoek bij een gelegenheidssample van professionals betrokken bij de zorg voor jongeren met somatische chronische aandoeningen (12-25 jaar). 115 zorgverleners (48% kinderartsen) uit (kinder)ziekenhuizen vulden een webenquete in. Daarnaast zijn er acht aanvullende telefonische interviews gehouden. Naast medische aspecten vinden zorgverleners de maatschappelijke positie van deze jongeren een belangrijk gespreksonderwerp voor consulten. Voorbereiding op transitie in zorg en bevordering van meer zelfstandigheid krijgen bij de meeste teams wel aandacht, maar een minderheid zet hier gestructureerde interventies voor in. Essentiele onderdelen van een transitieprogramma, zoals een transitieprotocol, individueel actieplan, transitiecoordinator of transitiepolikliniek, zijn alleen in een minderheid van de teams aanwezig. Meer dan 85% van de respondenten vindt dat het verbeteren van zelfmanagement, therapietrouw en zelfredzaamheid een hoge prioriteit voor hun patienten heeft. Er is een discrepantie tussen wat zorgverleners belangrijk vinden in adolescentenzorg en de wijze waarop transitiezorg nu wordt ingevuld. Bevorderen van zelfmanagement, therapietrouw en zelfredzaamheid (participatie) zijn belangrijke verbeterprioriteiten. De toename van het aantal jongeren met chronische aandoeningen maakt het urgent om ook in Nederland transitie in zorg beter te organiseren en meer aandacht te besteden aan zelfmanagement.

This study evaluated the feasibility and appreciation of a new educational board game (SeCZ TaLK) that stimulates communication on sexuality and intimate relationships in youth with chronic conditions.85 adolescents with chronic conditions or disabilities piloted the board game in three rehabilitation centers/schools for the disabled, one outpatient clinic and a patient organization. They assessed their experiences through a brief questionnaire, as did 12 health care professionals and teachers who acted as facilitators.Eighty-five percent of the adolescents found it is (very) important to discuss sexuality and intimate relationships; 81% felt that SeCZ TaLK enabled this. Girls were more positive about the game than boys (p.05) and younger participants were more positive than older ones (p.01). Youth in an outpatient clinic appreciated the game most (p.05) compared to other settings. Professionals asserted that discussing these issues is important for their work and would recommend the game to colleagues.SeCZ TaLK is a promising tool for improving communication on sexuality with youth with special health care needs.Health care providers and teachers are recommended to use interventions such as SeCZ TaLK to stimulate communication about sexual health with adolescents with chronic conditions.

We investigated health-related quality of life (HRQOL) of children with language problems and controls. Data on language development (Language Screening Instrument 3-years-olds, Van Wiechen items) and HRQOL by means of the TNO-AZL Pre-school children Quality of Life-questionnaire (TAPQOL) were collected at age 3 in a population-based cohort by parental questionnaire (n = 8877, response 78%; mean age 39.1 months (SD 2.0), 4347 were girls). Cronbach's alpha (internal consistency) ranged between 0.63 and 0.85. Dependent on the definition of language problem, 131 to 316 children appeared to be language impaired. Receiver Operating Characteristic analyses (ROC-curves) to assess the discriminative ability of six TAPQOL scales revealed that the Communication scale and Social Functioning scale discriminated best between children with language problems and children without these problems. Language-impaired children had significantly lower scores on the Communication scale and Social Functioning scale as compared to children without language problems (p < 0.01). The findings indicate that language problems at age three can have an impact on children's social life. These results provide additional evidence for the importance of monitoring the language development and its consequences during childhood

OBJECTIVE. The goal of this study was to assess the effects of screening and early treatment of preschool children for language delay on language development and school performance at age 8. METHODS. A cluster-randomized, controlled trial and follow-up study of 55 child health centers in 6 geographic regions were conducted from January 2002 to September 2005. A total of 9419 children who were from the general population and aged 15 months at entry were studied. School type end school progress was known for 5406 (57.4%) children. In the intervention group, a structured screening instrument was conducted twice (at ages 15/18 and 24 months), and usual care was applied in the control group. The screening instrument consisted of a uniform set of questions for the parents and test elements for the child. A positive screen result was followed by multidisciplinary assessments at speech and hearing centers and subsequent early treatment if needed. Percentages of children who attended a special school, repeated a class because of language problems, and scored low on standardized language tests, in intention-to-screen analyses, were measured. RESULTS. At age 8, 2.7% in the intervention group and 3.7% in the control group attended a special school, 6.1% vs 4.9% had repeated a grade, 8.8% vs 9.7% had deficient oral language performance, 4.7% vs 4.7% had deficient reading, and 2.8% vs 4.2% had deficient spelling. CONCLUSIONS. Screening toddlers for language delays reduces the number of children who require special education and leads to improved language performance at age 8. Nationwide implementation of the screening might be recommended.