Transition from paediatric urology to urology for adults:a joint challenge

Many urologic conditions in childhood require lifelong follow-up. However, the transition from paediatric to adult care is far from well managed. This can lead to adolescents becoming lost to follow-up and unnecessary complications occurring. We describe the key components of a transition programme from paediatric urology into adult urology, using the recommendations from the Dutch quality standard (2022). Preparation for independence and self-management of young people, a transition coordinator, a warm hand-over and reception in adult care are essential. Necessary preconditions are a motivated team consisting of professionals from both paediatric and adult care, in addition to management support, supporting ICT and financial reimbursement. Investing in a smooth transition from paediatric to adult care is not a luxury, but part of good, person-centred urological care.</p

Patient perceived needs and experiences of person-centered care in patients with inflammatory arthritis

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

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.</p

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

The self-regulation skills instrument in transplantation (SSIt):Development and measurement properties of a self-report self-management instrument

Objective: To develop a self-management instrument for organ transplant recipients that incorporates self-regulations skills and to determine its measurement properties. Methods: The instrument includes concepts from social cognitive models: problem awareness, attitude, self-efficacy, motivation, social support, goal setting, goal pursuit, skills and goal affect. The measurement properties were evaluated based on the COSMIN guidelines. Face and content validity were determined through patient assessment, Three-Step Test-Interview and expert assessment using the Content Validity Index. Structural validity and reliability were tested using exploratory factor analysis and Cronbach's alpha. Construct validity was tested by comparing subscales with the Health Education Impact Questionnaire (heiQ). Results: After face and content validity assessment 47 items were entered into the exploratory factor analysis. The analysis showed two meaningful factors, with internal consistency of 0.90 and 0.89. Spearman correlations between the subscales and heiQ were moderate (0.55; 0.46). The final version consists of 21 items, divided into two scales: ‘Setbacks’ and ‘Successes’. Conclusions: The Self-regulation skills instrument in transplantation (SSIt) is a valid and reliable instrument to asses necessary skills for self-management after transplantation and may be useful for other patients as well. Practice implications: Insight into self-regulation competencies can help healthcare professionals to tailor self-management support.</p

The self-regulation skills instrument in transplantation (SSIt):Development and measurement properties of a self-report self-management instrument

Objective: To develop a self-management instrument for organ transplant recipients that incorporates self-regulations skills and to determine its measurement properties. Methods: The instrument includes concepts from social cognitive models: problem awareness, attitude, self-efficacy, motivation, social support, goal setting, goal pursuit, skills and goal affect. The measurement properties were evaluated based on the COSMIN guidelines. Face and content validity were determined through patient assessment, Three-Step Test-Interview and expert assessment using the Content Validity Index. Structural validity and reliability were tested using exploratory factor analysis and Cronbach's alpha. Construct validity was tested by comparing subscales with the Health Education Impact Questionnaire (heiQ). Results: After face and content validity assessment 47 items were entered into the exploratory factor analysis. The analysis showed two meaningful factors, with internal consistency of 0.90 and 0.89. Spearman correlations between the subscales and heiQ were moderate (0.55; 0.46). The final version consists of 21 items, divided into two scales: ‘Setbacks’ and ‘Successes’. Conclusions: The Self-regulation skills instrument in transplantation (SSIt) is a valid and reliable instrument to asses necessary skills for self-management after transplantation and may be useful for other patients as well. Practice implications: Insight into self-regulation competencies can help healthcare professionals to tailor self-management support.</p

Adaptation and validation of the On Your Own Feet – Transition Experiences Scale evaluating transitions to adult services among adolescent mental health service users in Europe

Purpose: Experiences of young people transitioning from Child and Adolescent Mental Health Services (CAMHS) to Adult Mental Health Services (AMHS) have mostly been investigated qualitatively. This study adapts and validates the On Your Own Feet – Transition Experiences Scale (OYOF-TES) in a sample of CAMHS users in Europe and describes young people's and parents’ experiences with transition and end of care at CAMHS. Methods: The OYOF-TES was adapted to a mental health setting and translated. An End Of Care (OYOF-EOC) version (self- and parent-report) was developed. A total of 457 young people and 383 parents completed an OYOF-TES or OYOF-EOC. Psychometric properties and descriptives are presented. Results: The Cronbach's alphas of the OYOF-TES and OYOF-EOC parent/self-report ranged from 0.92 to 0.94. The two-factor structure was confirmed. The mean overall satisfaction reported by young people was 6.15 (0–10; SD=2.92) for transition and 7.14 (0–10; SD=2.37) for care ending. However, 26.7%-36.4% of young people were unsatisfied.Discussion: The OYOF-TES and OYOF-EOC can be used reliably in mental healthcare settings to capture young people's and parents’ transition experiences. The majority of young people and parents was satisfied with the process of transition and care ending, yet a third of young people had negative experiences.</p

Qualitative evaluation of a form for standardized information exchange between orthopedic surgeons and occupational physicians

BACKGROUND: Both occupational physicians and orthopedic surgeons can be involved in the management of work relevant musculoskeletal disorders. These physicians hardly communicate with each other and this might lead to different advices to the patient. Therefore, we evaluated a standardized information exchange form for the exchange of relevant information between the orthopedic surgeon and the occupational physician. The main goals of this qualitative study are to evaluate whether the form improved information exchange, whether the form gave relevant information, and to generate ideas to further improve this information exchange. METHODS: The information exchange form was developed in two consensus meetings with five orthopedic surgeons and five occupational physicians. To evaluate the information exchange form, a qualitative evaluation was set up. Structured telephone interviews were undertaken with the patients, interviews with the physicians were face-to-face and semi-structured, based on a topic list. These interviews were recorded and literally transcribed. Each interview was analyzed separately in Atlas-Ti. RESULTS: The form was used for 8 patients, 7 patients agreed to participate in the qualitative evaluation. All three orthopedic surgeons involved and three of the six involved occupational physicians agreed to be interviewed. The form was transferred to 4 occupational physicians, the other 3 patients recovered before they visited the occupational physician. The information on the form was regarded to be useful. All orthopedic surgeons agreed that the occupational physician should take the initiative. Most physicians felt that the form should not be filled out for each patient visiting an orthopedic surgeon, but only for those patients who do not recover as expected. Orthopedic surgeons suggested that a copy of the medical information provided to the general practitioner could also be provided to occupational physicians. CONCLUSION: The information exchange form was regarded to be useful and could be used in practice. The occupational physician should take the initiative for using this form and most physicians felt the information should only be exchanged for patients who do not recover as expected. That means that the advantage of giving information early in the treatment is lost