Content Validition and Psychometric Evaluation of the Self-efficacy and Performance in Self-management Support Instrument for Physiotherapists.

OBJECTIVE: To develop and psychometrically test the Self-Efficacy and Performance in Self-Management Support instrument for physiotherapists (SEPSS-PT), based on the SEPSS-36, the corresponding instrument for nurses. DESIGN: Instrument development including content validation and psychometric evaluation (construct validity, factor structure, and reliability). SETTING: Data were collected from literature, expertmeetings, and online questionnaire PARTICIPANTS: Next to a comprehensive literature study, experts (self-management experts (n=2); physiotherapists (n=10); patients (n=6)) and physiotherapists and physiotherapy students (n=334), participated in different stages of the study. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Not applicable. A literature study (n=42 reviews) and consultations with physiotherapists and patients identified the specific content for physiotherapy. The Five-A's model and overarching competencies of "supportive partnership attitude", were used to structure the items. Psychometric evaluation of the draft questionnaire (40 items) was tested in a sample of 334 physiotherapists and physiotherapy students from the Netherlands, of whom 33 filled out the questionnaire twice to establish the test-retest reliability. RESULTS: Confirmatory factor analyses revealed satisfactory fit indices for both the 6-factor model and hierarchical model, with best fit for the 6-factor model. The questionnaire discriminated between physiotherapists and physiotherapy students, and between physiotherapists who did or did not consider self-management support important. The overall internal consistency (Cronbach's alpha) was high, both for the self-efficacy and the performance items. In most of the subscales, test-retest intra-class correlation coefficients for both overall self-efficacy and performance were good, but in 3 subscales insufficient for performance. CONCLUSION: The SEPSS-PT questionnaire is a 40-item, Likert-scaled instrument with good content and construct validity, good internal consistency and reliability, and sufficient test-retest reliability. Future research in a larger and more diverse sample could confirm stability and discriminating power.

Mirror meetings as a tool to enhance professionals' awareness of the lived experiences of young people with inflammatory bowel disease.

During mirror meetings, professionals were confronted with the experiences of young people (YP) with inflammatory bowel disease to encourage them to improve their transitional care arrangements. The mirror meetings were held under guidance of an independent moderator. YP conversed about their transition experiences, while health care providers listened without interfering. Meetings were audio-recorded and summarized. Qualitative thematic analysis was conducted. Thirty-two YP participated in six mirror meetings with 26 professionals from paediatric and adult care. Professionals received concrete suggestions for improving their transitional care arrangements. These were about holistic care, tailored to individual needs and preferences, attention for mental health and the role of parents and peers. Advice given by YP matched transitional care guidelines' recommendations. Mirror meetings are a powerful tool to enhance professionals' awareness of YP's needs.

The added value of transition programs in Dutch diabetes care: A controlled evaluation study.

PURPOSE: The desirability of evaluating transition programs is widely acknowledged. This study aimed to explore the added value of transitional care investments for young adults with type 1 diabetes mellitus. DESIGN AND METHODS: Based on qualitative data, two groups of diabetes teams were created through cluster analysis: paying more (HI-ATT) versus less attention (LO-ATT) to transitional care. Retrospective controlled evaluation included chart reviews on healthcare use and clinical outcomes; and a survey on young adults' experiences, satisfaction with care, and self-management skills. RESULTS: Data from 320 patients in fifteen diabetes teams were collected; 123 young adults (38.4%) completed a questionnaire. Self-reported outcomes showed that young adults treated by a HI-ATT team felt better prepared for transfer (p < .05). Self-management outcomes did not differ between groups. HI-ATT teams had more scheduled consultations in the year after transfer (p < .05); only 10.6% of all measurements had reached targeted HbA1c scores. CONCLUSIONS: Current transitional care investments in Dutch diabetes care did not lead to notable improvements in experiences and outcomes, except for preparation for transfer. The period after transfer, however, is just as important. Attention is required for parent involvement. PRACTICE IMPLICATIONS: Transitional care investments should extend beyond the transfer. By educating young adults about the importance of regular clinic attendance and introducing additional person-centered consultations in adult care, nurses may help ensure continuity of care. Nurses could also introduce support programs for parents to prepare for the transition and their change in role, taking into account their continuing partnership.

The impact of type 1 diabetes on young adults' health-related quality of life.

BACKGROUND: Young adulthood is a challenging period for people with diabetes mellitus type 1 (T1DM) as they are facing multiple life transitions while managing a demanding disease. This poses a risk for impaired health-related quality of life (HRQOL). We assessed HRQOL in a cohort of young adults with T1DM in the Netherlands, and compared outcomes with those of Dutch norm groups of healthy young adults and young adults with a chronic disease. METHODS: We analyzed data collected in a larger evaluation study on transitional care for young adults with T1DM in a nationwide sample in the Netherlands, including twelve participating hospitals. These data had been obtained from online questionnaires completed by young adults with T1DM after they had transferred to adult care. HRQOL was self-reported with the Pediatric Quality of Life Inventory for young adults (PedsQL-YA). RESULTS: One hundred and sixty-five young adults with T1DM participated (44.2% response); and they scored significantly worse than did healthy peers on all domains of HRQOL, except social functioning. Particularly, functioning at school or work was worse than that of the norm group. The study group's HRQOL-scores were comparable to norm scores of young adults with chronic diseases, although the physical and social functioning of young people with T1DM was better. One quarter (26.1%) of all young adults with T1DM reported fatigue. CONCLUSIONS: During transition to adulthood, young adults with T1DM struggle to maintain a balance between the demands of managing a disease and their life. Many of them encounter problems at work or school, and suffer from fatigue. These findings underscore the need to regularly assess HRQOL, and to discuss work- and education-related issues in clinical practice.

Profiles of family caregivers of patients at the end of life at home: a Q-methodological study into family caregiver' support needs.

BACKGROUND: Family caregivers of patients at the end of life often experience care-related burden. To prevent caregiver burden and to enhance the capacity to provide care it is important to have insight in their support needs. The purpose of this study was to identify profiles of family caregivers who provide care to patients at the end of life at home. METHODS: A Q-methodological study was conducted in which family caregivers ranked 40 statements on support needs and experiences with caregiving. Thereafter they explained their ranking in an interview. By-person factor analysis was used to analyse the rankings and qualitative data was used to support the choice of profiles. A set of 41 family caregivers with a variety on background characteristics who currently or recently provided care for someone at the end of life at home were included. RESULTS: Four distinct profiles were identified; profile (1) those who want appreciation and an assigned contact person; profile (2) was bipolar. The positive pole (2+) comprised those who have supportive relationships and the negative pole (2-) those who wish for supportive relationships; profile (3) those who want information and practical support, and profile (4) those who need time off. The profiles reflect different support needs and experiences with caregiving. CONCLUSIONS: Family caregivers of patients at the end of life have varying support needs and one size does not fit all. The profiles are relevant for healthcare professionals and volunteers in palliative care as they provide an overview of the main support needs among family caregivers of patients near the end of life. This knowledge could help healthcare professionals giving support.

Evaluating the feasibility of a nurse-led self-management support intervention for kidney transplant recipients: a pilot study.

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).

Correction to: S11 Experiences with a nurse-led self-management support intervention for people with chronic conditions; a mixed-methods approach.

[This corrects the article DOI: 10.1186/s12912-018-0301-3.].

Worries and needs of adults and parents of adults with neurofibromatosis type 1.

Neurofibromatosis type 1 (NF1) is a neurocutaneous disorder associated with lifelong tumor growth propensity and neurocognitive impairments. Although follow-up of adults with NF1 often focuses on tumor growth, follow-up of cognitive or social problems and other NF1-related comorbidity is often not a part of standardized care. In order to provide optimal care services for these patients, we explored the care needs of adults with NF1. A qualitative study was performed using semi-structured group interviews, exploring worries and care needs in medical, psychological, and socioeconomic domains, also focusing on the transition from pediatric to adult care. Four focus groups were conducted, including young adult patients, patients over age 30, and parents of young adult patients. In total, 30 patients and 12 parents participated. Data were transcribed verbatim and analyzed by computerized thematic analysis. Themes were organized using the World Health Organization International classification of functioning, disability, and health (ICF). Results indicated many and diverse worries and care needs both during the transitional period and in adulthood in medical, mental health, and socioeconomic domains. Worries could be categorized into 13 themes. Parents reported high stress levels and difficulties with their parental role. Participants expressed the need for more information, access to NF1 experts, daily living support, care for mental health and socioeconomic participation, and closer communication between health-care providers. In conclusion, worries and needs of patients and parents underline the importance of multidisciplinary follow-up and continuity of care during and after the transitional period. Additionally, parental stress requires more attention from care providers.

Skills for Growing Up-Epilepsy: An exploratory mixed methods study into a communication tool to promote autonomy and empowerment of youth with epilepsy.

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.

Self-management challenges and support needs among kidney transplant recipients: A qualitative study.

AIMS: This study investigated self-management challenges and support needs experienced by kidney transplant recipients. BACKGROUND: After kidney transplantation, recipients are expected to take an active role in self-management. However, evidence suggests that nurses experience difficulties operationalizing self-management support. Greater insight into the recipients' perspective could help to improve the adequacy and efficacy of nurse-led self-management support. DESIGN: A cross-sectional qualitative study. METHODS: Focus groups and individual interviews were carried out with kidney transplant recipients treated in a Dutch university hospital. Directed content analysis (DCA) was used. RESULTS: Forty-one kidney transplant recipients participated. Challenges after transplantation included becoming an expert patient, adjusting daily life activities, dealing with medical regimen, forming relationships with nurses, dealing with social consequences, dealing with emotions related to transplantation and the donor and improving self-image. To be able to deal with these challenges, participants wished to receive disease specific knowledge and instruction, share personal experiences with fellow patients, share and discuss not only medical but also emotional and social issues with nurses and wanted to be encouraged through positive feedback. "One-size fits all" education was considered insufficient in meeting their needs. CONCLUSIONS: After kidney transplantation, recipients experienced various challenges in dealing with the medical, emotional and social tasks. Current support from nurses overlooked recipients' emotional and social support needs. Nurses need adequate tools and training to be able to meet recipients' self-management support needs.

What support is needed to self-manage a rheumatic disorder: a qualitative study.

BACKGROUND: Today, patients are expected to take an active role in the form of self-management. Given the burden of a rheumatic disorder, the patients cannot be expected to self-manage on their own. In order to develop self-management interventions that fit patients' needs and preferences, it is essential to examine patients' perspective on how support can be optimized. This study aimed to identify support needs of outpatients with rheumatic disorders and preferences for who should provide self-management support. METHODS: A qualitative study was conducted using focus groups and individual interviews with outpatients with rheumatic disorders treated in a Dutch university hospital. Interview data was analysed with Directed Content Analysis and coded with predetermined codes derived from our model about support needs of chronically ill patients. This model distinguished three types of support: instrumental, psychosocial and relational support. RESULTS: Fourteen patients participated in two focus group interviews and six were interviewed individually. Most patients preferred an active role in self-management. Nonetheless, they notably needed support in developing skills for self-managing their rheumatic disorder in daily life. The extent of support needs was influenced by disease stage, presence of symptoms and changes in one's situation. A trusted relationship and partnership were conditional for receiving any kind of professional support. Patients wanted to be seen as experienced experts of living with a rheumatic disorder. Acquiring specific disease-related knowledge, learning how to deal with symptoms and fluctuations, talking about emotional aspects, and discussing daily life issues and disease-related information were identified as important elements of self-management support. It was considered crucial that support be tailored to individual needs and expertise. Professionals and relatives were preferred as support givers. Few patients desired support from fellow patients. CONCLUSION: Self-management was primarily seen as patient's own task. Above all, patients wanted to be seen as the experienced experts. Professionals' self-management support should be focused on coaching patients in developing problem-solving skills, for which practical tools and training are needed.

A realist review: what do nurse-led self-management interventions achieve for outpatients with a chronic condition?

AIM: The aim of this study was to examine how nurse-led interventions that support self-management of outpatients with chronic conditions work and in what contexts they work successfully. BACKGROUND: Self-management could be directed at goals such as quality of life, adherence or patients' empowerment. Self-management support is an increasingly important task of nurses. Many nurse-led interventions have been developed but it is not clear how these actually help improve patients' self-management capabilities. DESIGN: Realist review. DATA SOURCES: Primary research studies on self-management support interventions conducted by nurses from January 2000 until March 2015 were retrieved from all relevant databases. The studies had a before-after design and used qualitative and quantitative methods. REVIEW METHODS: For each study, we described how the intervention was supposed to improve self-management and compared this with the empirical evidence. Next, we described the context-mechanism-outcome strings for each separate study, explored patterns and integrated the findings. RESULTS: Thirty-eight papers were included, evaluating 35 interventions concerning a diversity of conditions. Seven different context-mechanism-outcome strings were identified. Interventions focusing on patients' intrinsic processes were most successful. Least successful were interventions only providing education aimed at patient behaviour change. Various contexts can influence the success of the interventions: involvement of relatives, target group (i.e. chronic condition, motivation, being recently diagnosed or not), involvement of fellow patients and intervention group homogeneity or heterogeneity. CONCLUSION: Successful interventions focus on patients' intrinsic processes (i.e. motivation or self-efficacy). This would guide nurses to decide what self-management support intervention they can best use in their specific setting and patient group.

Self-management support from the perspective of patients with a chronic condition: a thematic synthesis of qualitative studies.

BACKGROUND: Receiving adequate support seems to be crucial to the success of self-management. Although different empirical studies separately examined patients' preferences for self-management support (SMS), an overview is lacking. OBJECTIVE: The aim of this qualitative review was to identify patients' needs with respect to SMS and to explore by whom this support is preferably provided. SEARCH STRATEGY: Qualitative studies were identified from Embase, MEDLINE OvidSP, Web of science, PubMed publisher, Cochrane central, the Cumulative Index to Nursing and Allied Health Literature (CINAHL) and PsycINFO. INCLUSION CRITERIA: Articles needed to meet all of the following criteria: (i) focuses on self-management, (ii) concerns adult patients with rheumatic diseases (rheumatoid arthritis and fibromyalgia), a variant of cancer or chronic kidney disease, (iii) explores support needs from the patients' perspective, (iv) uses qualitative methods and (v) published in English. DATA EXTRACTION AND SYNTHESIS: A thematic synthesis, developed by Thomas and Harden, was conducted of the 37 included studies. MAIN RESULTS: Chronic patients need instrumental support, psychosocial support and relational support from health-care professionals, family/friends and fellow patients to manage the chronic condition. Relational support is at the centre of the support needs and fuels all other types of support. DISCUSSION AND CONCLUSIONS: Patients do not self-manage on their own. Patients expect health-care professionals to fulfil a comprehensive role. Support needs can be knitted together only when patients and professionals work together on the basis of collaborative partnership. Dynamics in support needs make it important to regularly assess patient needs.

The development and psychometric validation of the self-efficacy and performance in self-management support (SEPSS) Instrument.

AIM: To develop and psychometrically test the self-efficacy and performance in self-management support (SEPSS) instrument. BACKGROUND: Facilitating persons with a chronic condition to take an active role in the management of their condition, implicates that nurses acquire new competencies. An instrument that can validly and reliably measure nurses' performance and their perceived capacity to perform self-management support is needed to evaluate current practice and training in self-management support. DESIGN: Instrument development and psychometric testing of the content and construct validity, factor structure and reliability. METHODS: A literature review and expert consultation (N = 17) identified the content. The items were structured according to the Five-A's model and an overarching category of 'overall' competencies. The initial instrument was tested in a sample of 472 nurses and 51 nursing students from Belgium and the Netherlands, between June 2014-January 2015. RESULTS: Confirmatory factor analyses revealed satisfactory fit indices for the six-factor structure. Discriminating power was demonstrated for subgroups. The overall internal consistency (Cronbach's alpha) was high both for the self-efficacy and the performance items. The test-retest intra-class correlation coefficients were good. CONCLUSION: The SEPSS instrument is a 36-item, Likert-scaled self-reporting instrument with good content and construct validity, and good internal consistency reliability and good test-retest reliability. Therefore, it is a promising instrument to measure self-efficacy and performance with regard to self-management support.

Rhetoric or reality? What nurse practitioners do to provide self-management support in outpatient clinics: an ethnographic study.

AIMS AND OBJECTIVES: To describe how nurse practitioners enact their role in outpatient consultations, and how this compares to their perception of their responsibility for patients with chronic conditions. BACKGROUND: Nurse practitioners working with patients with chronic conditions seek to support them in self-managing their diseases. DESIGN: An ethnographic study. METHODS: Episodic participant observations (in total 48 hours) were carried out combined with formal interviews. The study population consisted of a purposive sample of nurse practitioners working in five outpatient clinics related to chronic care in one university medical centre in the Netherlands. Two different types of clinics were selected, namely (1) for patients with episodic flare-ups and (2) for patients with diseases requiring life-saving procedures. RESULTS: The nurse practitioners perceived the monitoring of patients' treatment as their main professional responsibility. Four monitoring strategies could be distinguished: 'assessing health conditions', 'connecting with patients', 'prioritising treatment in daily living' and 'educating patients'. CONCLUSION: While nurse practitioners considered building a relationship with their patients of utmost importance, their consultations were mostly based on a conventional medical model of medical history taking. Little attention was paid to the social, psychological and behavioural dimensions of illness. Nurse practitioners in this study seemed quite successful in their extension into medical territory, but moving patients' illness perceptions to the background was not conducive to self-management support. RELEVANCE TO CLINICAL PRACTICE: By their medical subspecialty expertise, nurse practitioners have a major role in the longitudinal process of the management of chronic diseases' treatment. Supporting patients to reduce the impact of the disease and its complications requires nurse practitioners to develop new coaching strategies designed to meet patients' individual needs.

Driven by Ambitions: The Nurse Practitioner's Role Transition in Dutch Hospital Care.

INTRODUCTION: Insight into nurse practitioners' (NPs') role transition can help NP students and new graduates in taking on new responsibilities in a changing and demanding healthcare context. The aim of the research was to explore the role transition from nurse to NP using the components of Meleis's Framework of Transitions. METHOD: A qualitative descriptive design was used. Individual interviews (n = 9) and two focus group discussions (n = 12) were held with NPs. Data were analyzed with the directed content analysis method. FINDINGS: The Framework component transitions' nature was characterized by changes in the healthcare system, combined with professional and educational role changes. Transition conditions showed that the respondents felt distressed after they became accountable for a patient's care and well-being. Although the respondents were authorized to do medical procedures, they initially lacked nursing role models and NP protocols. Process indicators showed ongoing transition; the respondents were still developing clinical competencies and confidence in patient care while relying on earlier acquired nursing competencies. Outcome indicators showed that the respondents found themselves successful in the medical extension of two different nursing roles: continuity of medical care for hospitalized patients in acute and intensive care settings, and being responsible for continuity of care for chronic patients in outpatient clinics. CONCLUSIONS: Role transition was characterized by coping with feelings of distress at the cost of time and effort. The respondents' strategies to adapt to new expectations, combined with organizational support, determined the outcomes as well as the start of new transitions. CLINICAL RELEVANCE: NPs' role transition in hospital care implies a dynamic ongoing process that needs to be supported, with the ultimate goal to improve patient outcomes.

Nurses' views on patient self-management: a qualitative study.

AIMS: To unravel outpatient nurses' views on the role of people with chronic conditions in self-management, nurses' own support role and to establish how these views relate to nurse-led self-management interventions. BACKGROUND: Providing self-management support is a core task of nurses in outpatient chronic care. However, the concept of self-management is interpreted in different ways and little is known about nurses' views on patients' role in self-management and nurses' own support role. DESIGN: Qualitative design. METHODS: Individual semi-structured interviews were held in 2012-2013 with outpatient nurses at a university medical hospital in the Netherlands. After transcription, data-driven codes were assigned and key elements of views and experiences were discussed in the research team. Finally, insights were merged to construct and characterize types. RESULTS: Twenty-seven nurses were interviewed. The analysis identified three divergent views on self-management support: adhering to a medical regimen; monitoring symptoms; and integrating illness into daily life. These views differ with respect to the patient's role in self-management, the support role of the nurse and the focus of activities, ranging from biomedical to biopsychosocial. The first two were mainly medically oriented. Nurses applied interventions consistent with their individual views on self-management. CONCLUSION: Nurses had distinct perceptions about self-management and their own role in self-management support. Social and emotional tasks of living with a chronic condition were, however, overlooked. Nurses seem to lack sufficient training and practical interventions to provide self-management support that meets the integral needs of patients with a chronic condition.

Experiences with and Outcomes of Two Interventions to Maximize Engagement of Chronically Ill Adolescents During Hospital Consultations: A Mixed Methods Study.

Improving patient-provider communication during hospital consultations is advocated to enhance self-management planning and transition readiness of adolescents with chronic conditions. This longitudinal mixed methods study evaluates the implementation and the outcomes of independent split-visit consultations and individual transition plans by 22 hospital teams participating in the Dutch Action Program 'On Your Own Feet Ahead!'. The interventions raised awareness in adolescents and professionals, improved adolescents' display of independent behaviors and led to more discussions about non-medical issues. Successful implementation required a team-based approach and clear explanation to parents and adolescents. Pediatric nurses played a pivotal role in improving transitional care.

Reducing bottlenecks: professionals' and adolescents' experiences with transitional care delivery.

BACKGROUND: The purpose of this study was to describe the interventions implemented in a quality improvement programme to improve transitional care and evaluate its effectiveness in reducing bottlenecks as perceived by professionals and improving chronically ill adolescents' experiences with care delivery. METHODS: This longitudinal study was undertaken with adolescents and professionals who participated in the Dutch 'On Your Own Feet Ahead!' quality improvement programme. This programme followed the Breakthrough Series improvement and implementation strategy.A total of 102/128 (79.7%) professionals from 21 hospital teams filled out a questionnaire at the start of the programme (T0), and 79/123 (64.2%; five respondents had changed jobs) professionals completed the same questionnaire 1 year later (T1). Seventy-two (58.5%) professionals from 21 teams returned questionnaires at both time points. Of 389 and 430 participating adolescents, 36% and 41% returned questionnaires at T0 and T1, respectively. We used descriptive statistics and two-tailed, paired t-tests to investigate improvements in bottlenecks in transitional care (perceived by professionals) and care delivery (perceived by adolescents). RESULTS: Professionals observed improvement in all bottlenecks at T1 (vs. T0; p < 0.05), especially in the organisation of care, such as the presence of a joint mission between paediatric and adult care, coordination of care, and availability of more resources for joint care services. Within a 1-year period, the transition programme improved some aspects of patients' experiences with care delivery, such as the provision of opportunities for adolescents to visit the clinic alone (p < 0.001) and to decide who should be present during consultations (p < 0.05). CONCLUSIONS: This study demonstrated that transitional care interventions may improve the organisation and coordination of transitional care and better prepare adolescents for the transition to adult care within a 1-year period. By setting specific goals based on experiences with bottlenecks, the breakthrough approach helped to improve transitional care delivery for adolescents with chronic conditions.

What factors contribute to cancer survivors' self-management skills? A cross-sectional observational study.

PURPOSE: Many cancer survivors, facing the consequences of their disease and its treatment, have medical and supportive aftercare needs. However, limited knowledge exists regarding the relationship between support needs and survivors' self-management skills. The study aim is to explore factors contributing to cancer survivors' self-management skills. METHODS: A cross-sectional study was conducted among cancer survivors (n = 277) of two outpatient oncology clinics at a university hospital in the Netherlands. Patients with head and neck cancer (n = 55) who had received radiotherapy and cisplatin or cetuximab were included, as well as patients who had undergone hematopoietic stem cell transplantation (n = 222). The primary outcome was self-management skills, assessed using the Partners in Health Scale (PIH), which comprises two subscales: knowledge and coping (PIH-KC), and recognition and management of symptoms, and adherence to treatment (PIH-MSA). Secondary outcomes were quality of life (EORTC QLQ-C30), self-efficacy (SECD6), patient-centered care (CAPHS), and social support (HEIQ). Machine learning-based Random Forest models were employed to construct associative models. Feature Importance (FI) was used to express the contribution to the model. RESULTS: High emotional quality of life (FI = 33.1%), increased self-efficacy (FI = 22.2%), and greater social support (FI = 18.2%) were identified as key factors contributing to cancer survivors' self-management knowledge (PIH-KC). Furthermore, greater support from professionals (FI = 36.1%) and higher self-efficacy (FI = 18.2%) were found to benefit participants' recognition and management, and therapy adherence (PIH-MSA). CONCLUSIONS: A patient-centered relationship between nurses and cancer survivors is essential for therapy adherence and the management of aftercare needs. Training to provide this holistic self-management support is required.