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.

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).

Active involvement of young people with T1DM during outpatient hospital consultations: Opportunities and challenges in transitional care services.

OBJECTIVE: Little is known about active involvement of young people (YP) with type 1 diabetes (T1DM) in transitional care. This study aims to gain insight into patient-provider interactions during outpatient hospital consultations. METHODS: Semi-structured observations (n = 61) of outpatient consultations with YP with T1DM (15-25 years) treated in 12 hospitals in the Netherlands. The consultations concerned pediatric care (n = 23), adult care (n = 17), and joint consultations (n = 21). Thematic data analysis focused on whether professionals engaged in open, in-depth conversations; used motivational interviewing techniques; involved YP in shared decision-making; and addressed non-medical topics. RESULTS: Apart from some good examples, the healthcare professionals generally had difficulty interacting adequately with YP. They paid little attention to the YP's individual attitudes and priorities regarding disease management; non-medical topics remained generally underexposed. Conversations about daily life often remained shallow, as YP's cues were not taken up. Furthermore, decisions about personal and health-related goals were often not made together. CONCLUSION: By adopting a more person-centered approach, professionals could empower YP to take an active role in their diabetes management. PRACTICE IMPLICATIONS: Using a structured conversation model combined with a tool to encourage YP's agenda-setting and shared decision-making is recommended for more person-centered transitional care in T1DM.

Evaluation of a Nurse-led Aftercare Intervention for Patients With Head and Neck Cancer Treated With Radiotherapy and Cisplatin or Cetuximab.

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.

Value of an outpatient transition clinic for young people with inflammatory bowel disease: a mixed-methods evaluation.

OBJECTIVE: Developing and evaluating effective transition interventions for young people (16-25 years) with inflammatory bowel disease (IBD) is a high priority. While transition clinics (TCs) have been recommended, little is known about their operating structures and outcomes. This study aimed to gain insight into the value of a TC compared with direct handover care. DESIGN: Controlled mixed-methods evaluation of process outcomes, clinical outcomes and patient-reported outcomes. SETTING: Two outpatient IBD clinics in the Netherlands. PARTICIPANTS: Data collection included: semistructured interviews with professionals (n=8), observations during consultations with young people (5×4 hours), medical chart reviews of patients transferred 2 to 4 years prior to data collection (n=56 in TC group; n=54 in control group) and patient questionnaires (n=14 in TC group; n=19 in control group). OUTCOMES: Data were collected on service structures and daily routines of the TC, experienced barriers, facilitators and benefits, healthcare use, clinical outcomes, self-management outcomes and experiences and satisfaction of young people with IBD. RESULTS: At the TC, multidisciplinary team meetings and alignment of care between paediatric and adult care providers were standard practice. Non-medical topics received more attention during consultations with young people at the TC. Barriers experienced by professionals were time restrictions, planning difficulties, limited involvement of adult care providers and insufficient financial coverage. Facilitators experienced were high professional motivation and a high case load. Over the year before transfer, young people at the TC had more planned consultations (p=0.015, Cohen's d=0.47). They showed a positive trend in better transfer experiences and more satisfaction. Those in direct handover care more often experienced a relapse before transfer (p=0.003) and had more missed consultations (p=0.034, Cohen's d=-0.43) after transfer. CONCLUSION: A TC offer opportunities to improve transitional care, but organisational and financial barriers need to be addressed before guidelines and consensus statements in healthcare policy and daily practice can be effectively implemented.

Controlled evaluation of a transition clinic for Dutch young people with cystic fibrosis.

BACKGROUND: Transition clinics (TCs) are advocated as best practice to support young people with cystic fibrosis (CF) during transition to adulthood and adult care. We aimed to research the functioning of a TC for young people with CF compared with direct hand-over care and to evaluate whether those treated at the TC have better transfer experiences and outcomes compared with the control group. METHODS: Mixed-methods retrospective controlled design, including interviews with professionals, observations of clinics, chart reviews (at four measurement moments), and patient surveys. Qualitative data analysis focused on organization and daily routines, and barriers and facilitators experienced. Young people's transfer experiences, self-management, health care use, and clinical outcomes were assessed quantitatively. RESULTS: The most notable feature distinguishing the TC and direct hand-over care comprised joint consultations between pediatric and adult care professionals in the former. A transition coordinator was considered essential for the success of the TC. The main barriers were lack of time, planning, and reimbursement issues. Young people treated at the TC tended to have better transfer experiences and were more satisfied. They reported significantly more trust in their adult care professionals. Their self-management-related outcomes were less favorable. CONCLUSIONS: The TC had several perceived benefits and showed positive trends in transfer experiences and satisfaction, but no differences in health-related outcomes. Structured preparation of young people, joint consultations with pediatric and adult care professionals, and better coordination were perceived as facilitating elements. Further improvement demands solutions for organizational and financial barriers, and better embedding of self-management interventions in CF care.

Support Needs of People With Head and Neck Cancer Regarding the Disease and Its Treatment.

OBJECTIVES: To provide insight into people's experiences in dealing with the consequences of head and neck cancer (HNC) in daily life and their needs for self-management support. SAMPLE & SETTING: 13 people with HNC who were successfully treated in the Department of Radiation Oncology at the Erasmus MC Cancer Institute in Rotterdam, the Netherlands. METHODS & VARIABLES: Two focus groups and six individual interviews; data were analyzed with directed content analysis. RESULTS: Most patients wished to receive professional support for dealing with post-treatment consequences. Apart from physical complaints, patients had difficulties in dealing with the emotional aspects of HNC and its treatment and struggled with building self-confidence to move on with their lives. Patients mentioned the importance of relatives being there for them but complained that their needs were not always met. Support from fellow patients was valued for their empathetic capacity. IMPLICATIONS FOR NURSING: Nurses must provide self-management support that meets people's integral needs inherent in living with the consequences of HNC, particularly in the initial post-treatment period. Practical interventions could be useful.

Evaluating outpatient transition clinics: a mixed-methods study protocol.

INTRODUCTION: To support young people in their transition to adulthood and transfer to adult care, a number of interventions have been developed. One particularly important intervention is the transition clinic (TC), where paediatric and adult providers collaborate. TCs are often advocated as best practices in transition care for young people with chronic conditions, but little is known about TC models and effects. The proposed study aims to gain insight into the added value of a TC compared with usual care (without a TC). METHODS AND ANALYSIS: We propose a mixed-methods study with a retrospective controlled design consisting of semistructured interviews among healthcare professionals, observations of consultations with young people, chart reviews of young people transferred 2-4 years prior to data collection and questionnaires among the young people included in the chart reviews. Qualitative data will be analysed through thematic analysis and results will provide insights into structures and daily routines of TCs, and experienced barriers and facilitators in transitional care. Quantitatively, within-group differences on clinical outcomes and healthcare use will be studied over the four measurement moments. Subsequently, comparisons will be made between intervention and control groups on all outcomes at all measurement moments. Primary outcomes are 'no-show after transfer' (process outcome) and 'experiences and satisfaction with the transfer' (patient-reported outcome). Secondary outcomes consider clinical outcomes, healthcare usage, self-management outcomes and perceived quality of care. ETHICS: The Medical Ethical Committee of the Erasmus Medical Centre approved the study protocol (MEC-2014-246). DISSEMINATION: Study results will be disseminated through peer-reviewed journals and conferences. The study started in September 2014 and will continue until December 2016. The same study design will be used in a national study in 20 diabetes settings (2016-2018).

The road to independence: lived experiences of youth with chronic conditions and their parents compared.

PURPOSE: To gain insight into the development of young persons with chronic conditions towards independence by comparing their lived experiences to those of their parents. METHODS: Semi-structured interviews were held with 16 young persons (7 males, 9 females; 15-22 years) and one of their parents (n=16), asking about the young persons' daily lives and their development towards adulthood. Themes were deductively derived from the Skills for Growing Up framework, i.e. agency, living and daily activities, social and intimate relationships, education, work, leisure activities, transportation, and healthcare. Parents also reflected on how they dealt with the child's chronic condition. A paired thematic analysis was conducted. RESULTS: Parents were often less convinced that their children could act independently than the young persons themselves. They were concerned about them and tended to interfere with their daily lives, often to the annoyance of their children. Also, parents often perceived more barriers in social participation, while young persons were more positive. CONCLUSION: The perceptions of young persons and their parents clashed on living independently, intimate relationships, leisure activities, and healthcare. Young people might benefit from professional support in these domains to help them strengthen their autonomy and to prevent child-parent conflict and negative outcomes.

'Skills for growing up': supporting autonomy in young people with kidney disease.

BACKGROUND AND OBJECTIVES: End-stage kidney disease (ESKD) may interfere with children's developmental task of acquiring autonomy and participation. The Skills for Growing Up tool encourages normal development towards independence and autonomy during paediatric rehabilitation. This study aimed to adapt this self-management tool for use in paediatric nephrology, and to test whether its use is feasible in daily practice. DESIGN AND PARTICIPANTS: A Delphi study was conducted among patients, their parents, professionals and experts to adjust the tool for use in nephrology. Feasibility was studied through individual and group interviews with professionals in all Dutch paediatric nephrology centres. RESULTS: Agreement was reached on the areas of social participation and medical management of ESKD. Compared with the original, the new instrument holds considerable more attention for autonomy in the renal healthcare area; for example, dealing with medication and transplantation. Professionals used and appreciated the tool, but the paper form was seen to limit feasibility. CONCLUSIONS: Making the tool available online is important. The challenge for professionals is to move beyond the focus on medical management and to consider developmental tasks when coaching their patients into adulthood. APPLICATION TO PRACTICE: The Skills for Growing Up-Nephrology (SGU-N) tool is a promising instrument for use by professionals in paediatric nephrology. Its use can help young people achieving autonomy and may contribute to their successful transition to adulthood and adult care.