MyHospitalVoice - a digital tool co-created with children and adolescents that captures patient-reported experience measures: a study protocol.

BACKGROUND: Children and adolescents have the right to participate in decisions concerning their health and express their views, also regarding hospital experiences. Patient-reported experience measures (PREMs) are valuable tools for systematically incorporating patient voices into healthcare systems. New developments have focused on PREMs for children and adolescents, though they are more commonly used in adults. A recent systematic review mapping their use for children and adolescents indicates a growing interest in this area. However, most PREMs are completed by proxy, in this case parents, so they do not necessarily reflect children's experiences or align with their rights. Innovation is required to support and engage children and adolescents in responding to these types of questionnaires. METHODS: Collaborating with children and adolescents (4-17 years), the primary aim of this study is to develop and validate the tool MyHospitalVoice containing digital and developmentally appropriate PREMs. The secondary aim is to document and evaluate the approaches used to involve children and adolescents and to assess the impact of their involvement. Based on the European Organisation for Research and Treatment of Cancer framework, we will divide its development and validation into four phases. First, we will discuss PREM items with children and adolescents, who will select and prioritise what they perceive as most important. Second, we will create items targeting different age groups (4-7, 8-12, and 13-17 years) and design a responsive digital interface with child and youth friendly ways of responding to the questionnaires. Third, we will explore how children and adolescents perceive MyHospitalVoice using cognitive interviewing techniques and other age-appropriate methods. Last, we will pilot test MyHospitalVoice to explore patient experiences and response rates. In each phase, children and adolescents will play an active role. We will involve young adults as peer researchers in the project group to ensure that their perspectives are part of the decision-making process. DISCUSSION: This project will contribute to research on co-creating with children and adolescents and enhance our understanding of their patient experiences. A validated tool like MyHospitalVoice can help improve quality of care by translating the needs and preferences of children and adolescents into clinical practice.

Nurses' and physicians' perspectives on implementation barriers and facilitators in a transfer program for parents of adolescents with chronic illness.

AIM: To identify barriers and facilitators impacting the implementation of a comprehensive transfer program aimed at parents of adolescents with chronic illness in clinical practice. DESIGN: A real-time, qualitative process evaluation. METHODS: Individual interviews were conducted with 10 nurses and seven physicians from paediatric and adult outpatient clinics: Nephrology, hepatology, neurology, and rheumatology. Data were analysed through the lens of normalization process theory. RESULTS: Themes were framed within the theory's four components. (1) Coherence: Healthcare professionals' views on their core tasks and on the parents' role influenced their perception of the program. (2) Cognitive participation: A named key worker, autonomy, and collaboration impacted healthcare professionals' involvement in the program. (3) Collective action: Department prioritization and understanding of the program's aim were key factors in its successful delivery. (4) Reflective monitoring: Participants experienced that the program helped parents during transfer but questioned if the program was needed by all families. CONCLUSION: We identified three barriers: Healthcare professionals' lack of understanding of the parental role during transfer, top-down decisions among nurses, and physicians' uncertainty about their role in joint consultations. Facilitators: Healthcare professionals' understanding of the program's purpose and expected effect, the nurses' significant role as named keyworkers, and good collaboration across paediatric and adult departments. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: Implementation strategies should be developed before implementing a transfer program in clinical practice. IMPACT: Implementing a parental transfer program in clinical practice can be challenging. Therefore, for successful implementation, it is crucial to identify barriers and facilitators. Barriers and facilitators exist at the personal, professional, and organizational levels, and it is important to understand them. The results of this qualitative study could support the implementation of transfer programs in other settings. REPORTING METHOD: Consolidated criteria for reporting qualitative studies (COREQ). PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution. WHAT DOES THIS PAPER CONTRIBUTE TO THE WIDER GLOBAL CLINICAL COMMUNITY?: Nurses' and physicians' experiences of ownership of the transfer program is essential for successful implementation. Clinics should appoint a named keyworker, preferably a nurse, as the driving force during the implementation of a transfer program. Nurses and physicians should receive training about the purpose, justification, and expected effect of a transfer program before implementation.

Sexuality among young Danes treated for mental health problems: Baseline findings in a nationwide cohort study.

Mental health problems are common among adolescents and young adults (AYA), but although sexuality plays a central role in the transition from adolescence to adulthood, associations between such problems and sexuality have only been sparsely researched in AYA. The aim of this study was to investigate the association between mental health problems and various outcomes related to body and sexuality, romantic relationships, sexual functioning, and sexual risk behaviors among AYA. We used questionnaire data from 8696 Danish AYA aged 15-24 years who participated in the nationwide cohort study Project SEXUS at baseline in 2017-2018. Logistic regression analyses yielded demographically weighted, age-adjusted odds ratios for associations between mental health problems and sexual outcomes. Female AYA treated for mental health problems reported more active sex lives than other women. Treatment for mental health problems was associated with statistically significantly increased odds ratios for several sexual dysfunctions, and treated AYA significantly more often reported sexual debut before age 15 years, high sex partner numbers, sexual victimization, unsafe sex, sexually transmitted infections, induced abortions, discontentment with the appearance of body and genitalia, gender non-conformity, same-sex sexual experience, and non-heterosexual identity. Compared to healthy peers, AYA treated for mental health problems constitute a vulnerable group at increased risk of sexual adversities. Healthcare professionals should acknowledge these possible sexual challenges and offer relevant counselling to reduce the risk of adverse sexual outcomes in this group.

Low Level of Well-being in Young People With Physical-Mental Multimorbidity: A Population-Based Study.

PURPOSE: We aimed to examine whether wellbeing, health behavior, and youth life among young people (YP) with co-occurrence of physical-mental conditions, that is, multimorbidity differ from YP with exclusively physical or mental conditions. METHODS: The population included 3,671 YP reported as having a physical or/and mental condition from a Danish nationwide school-based survey (aged 14-26 years). Wellbeing was measured by the five-item World Health Organization Well-Being Index and life satisfaction by the Cantril Ladder. YP's health behavior and youth life were evaluated in seven domains: home, education, activities/friends, drugs, sleep, sexuality, and self-harm/suicidal thoughts, in accordance with the Home, Education and employment, Eating, Activities, Drugs, Sexuality, Suicide and depression, and Safety acronym. We performed descriptive statistics and multilevel logistic regression analysis. RESULTS: A total of 52% of YP with physical-mental multimorbidity reported a low level of wellbeing, compared to 27% of YP with physical conditions and 44% with mental conditions. YP with multimorbidity had significantly higher odds of reporting poor life satisfaction, compared to YP with exclusively physical or mental conditions. YP with multimorbidity had significantly higher odds for psychosocial challenges and health risk behavior, compared to YP with physical conditions, along with increased odds for loneliness (23.3%), self-harm (63.1%), and suicidal thoughts (54.2%), compared to YP with mental conditions. DISCUSSION: YP with physical-mental multimorbidity had higher odds for challenges and low wellbeing and life satisfaction. This is an especially vulnerable group and systematic screening for multimorbidity and psychosocial wellbeing is needed in all healthcare settings.

The role of play in hospitals.

Play is a non-invasive, safe, and inexpensive intervention that can help children and adolescents better manage difficult aspects of hospitalisation. Play has existed in hospitals for decades but is emerging as an interdisciplinary scientific field. The field concerns all medical specialties and healthcare professionals working with children. In this review, we describe play within different clinical contexts and recommend that directed and non-directed play activities should be prioritised in future paediatric departments. We also emphasise the need for professionalisation and research in the area.

A comprehensive transfer program from pediatrics to adult care for parents of adolescents with chronic illness (ParTNerSTEPs): study protocol for a randomized controlled trial.

BACKGROUND: Previous research shows that adolescents with a chronic illness have more successful transfers to adult care if their parents are involved during the transition. However, there is a lack of structured and evaluated transfer programs for parents. Our aim will be to test a comprehensive transfer program for parents of adolescents with chronic illness during the transfer from pediatric to adult care and to evaluate the program's effectiveness, acceptability, and costs. METHODS: The overall design for this protocol will be a randomized controlled trial. A total of 62 dyads consisting of an adolescent (age 16.5-17.5) and at least one parent will be recruited from one of four pediatric outpatient clinics (nephrology, hepatology, neurology, or rheumatology) at Copenhagen University Hospital - Rigshospitalet, Denmark. The dyads will be randomized to receive the transfer program in addition to usual care or to receive usual care only. The program includes an informative website, bi-annual online educational events, and transfer consultations across pediatric and adult care. Outcome measures will include transition readiness, allocation of responsibility, parental uncertainty level, and transfer satisfaction. Data will be collected from participants at baseline, every 6 months until transfer, at transfer, and 3 months after transfer. The parents' acceptance of and satisfaction with the program will be explored through semi-structured interviews. Cost, barriers, and facilitators affecting future implementation will be identified in interviews with health care professionals, using the Normalization Process Theory as a framework for the process analysis. DISCUSSION: To our knowledge, this transfer program is one of the first interventions for parents of adolescents with a chronic illness during their child's transfer to adult care. Our trial will include parental and adolescent measures allowing us to examine whether a transfer program for parents will improve transfer to adult care for both parents and adolescents. We believe that results from our trial will be helpful in forming recommendations to ensure better involvement of parents in transitional care. TRIAL REGISTRATION: ClinicalTrials.gov NCT04969328 . Retrospectively registered on 20 July 2021.

Development of a complex intervention to support parents of adolescents with chronic illness transferring from pediatrics to adult care (ParTNerSTEPs).

BACKGROUND: Transition from pediatric to adult care for adolescents with chronic illness is associated with outpatient non-attendance and low treatment adherence in adolescents, and with anxiety and concerns among parents. Recent studies have shown that parent involvement results in better transitions. The aim of this paper was to describe the development, through participatory design, of a comprehensive transfer program targeted to parents of adolescents with chronic illness. METHODS: The study was based on the UK Medical Research Council's (MRC) framework on developing and testing complex interventions. To increase the program's feasibility and relevance, participatory design was chosen as the overall method. A collaboration group of parents, young people and health care professionals (HCP) were actively involved in the development of the program. The program was developed in three development stages, in accordance with the MRC framework: 1) identifying the evidence base, 2) identifying theory, and 3) modelling process and outcomes. RESULTS: Together with the collaboration group, we developed a comprehensive transfer program targeting parents, by undertaking an iterative process, involving a literature review, individual interviews, workshops and online brainstorms. The program, called ParTNerSTEPs (Parents in Transition - a Nurse-led Support and Transfer Educational Program) comprised three components: 1) an informative website, 2) online educational events for parents, and 3) transfer consultations with providers from both pediatrics and adult care. CONCLUSIONS: The MRC framework was successfully applied to develop a comprehensive transfer program targeting parents of adolescents with chronic ilness. By incorporating the principles of participatory design in the development phase, we ensured that both parents' and adolescents' needs were represented and addressed in the program. TRIAL REGISTRATION: ClinicalTrials.gov ID NCT04969328.

Health-Related Quality of Life Before and After Use of a Smartphone App for Adolescents and Young Adults With Cancer: Pre-Post Interventional Study.

BACKGROUND: Adolescent and young adult (AYA) patients with cancer are a group with underexplored needs throughout treatment and in survivorship. This missing knowledge can influence their quality of life (QoL). Given this fact, we have developed a smartphone app based on a cocreation process and have an investigation of QoL among users planned as part of pilot testing this app. Future research is warranted to determine the effect of mobile health (mHealth) tools such as smartphone apps among the AYA cancer population. OBJECTIVE: The aim of this study was to investigate the feasibility of a smartphone app among AYA patients with cancer in active treatment and posttreatment, in a pilot test by measuring health-related QoL before and after the use of the app. METHODS: Participants were recruited via the youth support initiative and social organization for AYAs with cancer, Kræftværket, based at Rigshospitalet, University Hospital of Copenhagen, Denmark. Participants were evenly distributed in active treatment and posttreatment groups. After written informed consent, all participants were asked to use the app Kræftværket as they deemed appropriate over a 6-week period. The participants were asked to complete the 30-item European Organization for Research and Treatment of Cancer Quality of Life Questionnaire before and after the 6-week period. The collected QoL data were analyzed with t tests to determine differences between groups and from baseline. RESULTS: In total, we enrolled 20 participants, 10 in active treatment and 10 posttreatment (median time after treatment was 4 months) group. Median age of the participants was 25 years. No differences in QoL were seen at baseline (P=.65). The posttreatment group experienced a significant increase in overall QoL after the 6-week period (global QoL: baseline 62.5, SD 22.3; after 6 weeks 80.8, SD 9.7; P=.04). For the group in active treatment, the QoL remained stable throughout the 6 weeks. CONCLUSIONS: This study shows the feasibility and possible effect on QoL associated with the use of an mHealth tool in AYA patients. mHealth support tools are warranted for this population.

Developing Age-Appropriate Supportive Facilities, Resources, and Activities for Adolescents and Young Adults with Cancer Across Departments and Diagnoses: A Single-Center Experience.

In 2015, a support initiative for adolescents and young adults with cancer, Kræftværket, was created at Rigshospitalet, Copenhagen University Hospital in Denmark. The primary objective of Kræftværket is to provide youth-friendly support, care, and treatment practices. As Kræftværket provides services to both pediatric and adult departments, a network between patients who would otherwise not interact has been created. The initiative is managed by a Youth Coordinator, and specifically trained health professional Youth Ambassadors. Dedicated staff, including Youth Coordinator and the Youth Ambassadors, are essential in maintaining focus on current initiatives for this patient group.

"On Your Own": Adolescent and Young Adult Cancer Survivors' Experience of Managing Return to Secondary or Higher Education in Denmark.

PURPOSE: As a consequence of cancer treatment, many adolescents and young adults (AYA) patients are required to take leave or face setbacks from their education. While most AYA cancer survivors and survivors of childhood cancer are capable of successfully returning to the educational system, unsuccessful returns place AYA at an increased risk of social isolation, stigmatization, and financial burden. The perspective of AYA cancer survivors who have returned to education is valuable to understand the challenges faced and resources available throughout this transition. The purpose of this study was to explore AYA cancer survivors' management of returning to secondary or higher education. METHODS: Semistructured interviews were conducted with AYA cancer survivors between the ages of 15 and 25 at diagnosis pursuing secondary or higher education (n = 9). Interviews were transcribed verbatim and analyzed using Malterud's Systemic Text Condensation. RESULTS: Five themes were found: (Theme 1) Symptoms and Late Effects, (Theme 2) Navigating the System, (Theme 3) Lack of Understanding from Peers, (Theme 4) Unofficial Support, and (Theme 5) Changed Perspectives. AYA cancer survivors described facing challenges from the physical late effects of cancer treatment, as well as misunderstanding from municipal systems and peer groups. However, they stated that assistance was provided from unofficial sources of support, such as teachers and parents. CONCLUSIONS: AYA cancer survivors face social and systemic challenges throughout the return to education. The findings of this study support previous research suggesting that late effects and misunderstanding from peers and academic and municipal institutions may play a role in impacting social outcomes and academic performance.

Living with cystic fibrosis - a qualitative study of a life coaching intervention.

BACKGROUND: Cystic fibrosis (CF) is a chronic, life-shortening disease with a significant treatment burden. To support young adults with CF in their everyday life, we previously conducted a life coaching feasibility trial (published elsewhere). The aim of the current study was to explore how life coaching was experienced by study participants within the context of their lives with CF. METHODS: A qualitative study using individual interviews. Respondents (n=14) were recruited from the intervention group after participation in life coaching. Data were analyzed from a phenomenologic-hermeneutical perspective, inspired by Ricoeur's theory. FINDINGS: Periodic exacerbations of CF led to worry about disease progression, and interrupted the respondents' ability to fulfill daily life roles satisfactory. The treatment burden demanded self-discipline and this was sometimes at the expense of social life or career. The young adults rarely spoke to others about their situation; therefore, they valued opening up to a professional coach about life and concerns. We identified three themes: 1) living an unpredictable life; 2) the conflict between freedom and the constraints of illness; and 3) the value of telling one's story. In relation to all three themes, coaching promoted reflection over life situations, reframed thoughts, and facilitated finding new ways to manage everyday life. CONCLUSION: Life coaching is an intervention that is valued for those who feel challenged by their CF disease. Coaching programs should be designed to include the participants, when they feel a need for coaching and are open for change. Screening parameters to identify persons who will most likely benefit from life coaching are needed.

Facing the Maze: Young Cancer Survivors' Return to Education and Work-A Professional Expert Key Informant Study.

PURPOSE: An insufficient transition to normal life after cancer treatment in adolescent and young adults (AYAs) may lead to decreased occupational and educational opportunities throughout a survivor's lifespan. Key informant interviews were used to access unique knowledge of the healthcare, educational, and social systems. METHODS: We used key informant interviews with professionals representing disciplines from healthcare, educational, and social systems (n = 15). Informants were recruited through purposive sampling and snowball sampling. Interviews were analyzed thematically using Malterud's Systematic Text Condensation and verified by member checking. RESULTS: We found four major themes: the impact of late effects, navigating the system, social reintegration, and the drive of youth. Although legal frameworks are often in place to assist AYA cancer survivors, navigating the public, educational, and social systems is a complex task and many AYAs do not have the required skill set or energy. Furthermore, AYA survivors often feel different from their peers and misunderstood by their surroundings, which may hinder reintegration into normal social life. CONCLUSIONS: In Scandinavia, healthcare and education are free of charge with equal access for all, primarily funded by government taxes. Therefore, insurance status and tuition fees should not constitute barriers for returning to education and work. However, this study finds that the public and educational systems are complex to navigate, and that AYAs face trouble mobilizing the energy to receive needed support.

Using Cocreation in the Process of Designing a Smartphone App for Adolescents and Young Adults With Cancer: Prototype Development Study.

BACKGROUND: Adolescent and young adult (AYA) oncology and hematology is a developing field of medicine, focusing on a population that faces many challenges throughout medical treatment and beyond. Mobile health (mHealth) interventions provide exciting new opportunities for improvement of health-related quality of life (HRQoL) in AYAs with cancer. Many smartphone apps are currently available for AYAs with cancer; however, for AYAs with cancer, very few apps have been designed with direct input from AYAs themselves or have demonstrated their effectiveness and benefit. OBJECTIVE: The objective of this project was to develop the prototype of a smartphone app for AYAs with cancer through the process of cocreation, with the active input of AYAs who have received treatment for cancer directly impacting content and design. METHODS: Patients were recruited from a population of Danish AYAs who had received treatment for cancer between the ages of 15 and 29 years. The cocreation process was completed over the course of 3 workshops and intermittent ad hoc meetings, where the recruited AYAs worked in coordination with 1 nurse, 1 doctor, and 2 representatives from a digital agency and app developer. During each workshop, participants prioritized their goals for the app. After new app content was developed, feedback was requested from the participants, and changes were made accordingly. This iterative process continued until consensus on final product features and design were achieved. Health care professionals provided minimal input and primarily performed observational roles in the workshops, with direct interaction limited to introducing the project and explaining measurement features of the app in development. RESULTS: Three key features to be included in the prototype app were identified from the cocreation workshops: (1) a community forum; (2) an information library; and (3) a symptom and side-effect tracking tool. Bright, warm colors were selected for the app by the participating AYAs. The final prototype will be launched for pilot testing and implementation testing in February of 2018. CONCLUSIONS: The process of cocreation is a user-involved process that can create an end product that is useful and customized for the target population. This process, as such, is a beneficial process to utilize when addressing the specific needs of AYAs with cancer. The results of the here described app prototype will be evaluated in more detail in the near future. However, this description of the cocreation process in app development can be utilized for the creation of other mHealth interventions.

Coach to cope: feasibility of a life coaching program for young adults with cystic fibrosis.

BACKGROUND: Over the last two decades, lifespan has increased significantly for people living with cystic fibrosis (CF). However, several studies have demonstrated that many young adults with CF report mental health problems and poor adherence to their prescribed treatments, challenging their long-term physical health. Treatment guidelines recommend interventions to improve adherence and self-management. The aim of this study was to test the feasibility of a life coaching intervention for young adults with CF. METHODS: A randomized, controlled feasibility study was conducted at the CF Center at Copenhagen University Hospital, Rigshospitalet. Participants were young adults with CF, aged 18-30 years without severe intellectual impairments. Participants were randomized to either life coaching or standard care. The intervention consisted of up to 10 individual, face-to-face or telephone coaching sessions over a period of 1 year. Primary outcomes were recruitment success, acceptability, adherence to the intervention, and retention rates. Secondary outcome measures included health-related quality of life, adherence to treatment, self-efficacy, pulmonary function, body mass index, and blood glucose values. RESULTS: Among the 85 eligible patients approached, 40 (47%) were enrolled and randomized to the intervention or control group; two patients subsequently withdrew consent. Retention rates after 5 and 10 coaching sessions were 67% and 50%, respectively. Reasons for stopping the intervention included lack of time, poor health, perceiving coaching as not helpful, lack of motivation, and no need for further coaching. Coaching was primarily face-to-face (68%). No significant differences were found between the groups on any of the secondary outcomes. CONCLUSION: Both telephone and face-to-face coaching were convenient for participants, with 50% receiving the maximum offered coaching sessions. However, the dropout rate early in the intervention was a concern. In future studies, eligible participants should be screened for their interest and perceived need for support and life coaching before enrollment.

Gender difference in breast tissue size in infancy: correlation with serum estradiol.

Breast tissue in newborn infants is considered to be physiologic and mainly related to exposure to maternal hormones in utero or through breast-feeding. However, controversy exists as to whether breast tissue in later infancy is under the influence of endogenous hormones. Children at 2-4 mo of age have a surge of reproductive hormones, including estradiol, which may affect the mammary gland. In a prospective cohort study of 1126 healthy, 3-mo-old infants, breast tissue size and reproductive hormones were measured. We found that palpable breast tissue (diameter >or=3 mm) is a common physiologic condition present in 78.9% of children, significantly more frequent (p < 0.001) and larger (p < 0.001) in girls than in boys. Girls had significantly higher median estradiol levels than boys (30.0 versus 21.0 pmol/L, p < 0.001). In a multiple regression model including breast tissue size given as quartiles as the dependent variable and weight for gestational age, subscapular skinfold, weight at 3 mo of age and serum estradiol as independent variables, a gender difference was shown. In girls, the estradiol level was positively (p < 0.03) correlated to breast quartile. In boys, no correlations were found. Whether the stimulation of the mammary gland in infancy represents a developmental window that is of biologic significance for breast development and pathology in adulthood remains to be defined.