Monitoring Adolescent and Young Adult Patients With Cancer via a Smart T-Shirt: Prospective, Single-Cohort, Mixed Methods Feasibility Study (OncoSmartShirt Study).

Background: Wearables that measure vital parameters can be potential tools for monitoring patients at home during cancer treatment. One type of wearable is a smart T-shirt with embedded sensors. Initially, smart T-shirts were designed to aid athletes in their performance analyses. Recently however, researchers have been investigating the use of smart T-shirts as supportive tools in health care. In general, the knowledge on the use of wearables for symptom monitoring during cancer treatment is limited, and consensus and awareness about compliance or adherence are lacking. objectives: The aim of this study was to evaluate adherence to and experiences with using a smart T-shirt for the home monitoring of biometric sensor data among adolescent and young adult patients undergoing cancer treatment during a 2-week period. Methods: This study was a prospective, single-cohort, mixed methods feasibility study. The inclusion criteria were patients aged 18 to 39 years and those who were receiving treatment at Copenhagen University Hospital - Rigshospitalet, Denmark. Consenting patients were asked to wear the Chronolife smart T-shirt for a period of 2 weeks. The smart T-shirt had multiple sensors and electrodes, which engendered the following six measurements: electrocardiogram (ECG) measurements, thoracic respiration, abdominal respiration, thoracic impedance, physical activity (steps), and skin temperature. The primary end point was adherence, which was defined as a wear time of >8 hours per day. The patient experience was investigated via individual, semistructured telephone interviews and a paper questionnaire. Results: A total of 10 patients were included. The number of days with wear times of >8 hours during the study period (14 d) varied from 0 to 6 (mean 2 d). Further, 3 patients had a mean wear time of >8 hours during each of their days with data registration. The number of days with any data registration ranged from 0 to 10 (mean 6.4 d). The thematic analysis of interviews pointed to the following three main themes: (1) the smart T-shirt is cool but does not fit patients with cancer, (2) the technology limits the use of the smart T-shirt, and (3) the monitoring of data increases the feeling of safety. Results from the questionnaire showed that the patients generally had confidence in the device. Conclusions: Although the primary end point was not reached, the patients' experiences with using the smart T-shirt resulted in the knowledge that patients acknowledged the need for new technologies that improve supportive cancer care. The patients were positive when asked to wear the smart T-shirt. However, technical and practical challenges in using the device resulted in low adherence. Although wearables might have potential for home monitoring, the present technology is immature for clinical use.

Sexuality, intimacy, and body image among adolescents and young adults with cancer: a qualitative, explorative study.

AIM: The aim of this study was threefold: (1) to explore Danish adolescents and young adults' (AYAs) thoughts concerning sexual health particularly focusing on sexuality, intimacy, and body image throughout a cancer trajectory, (2) to investigate how AYAs experience healthcare professionals address of- and respond to sexual health issues, and (3) to identify AYAs' suggestions on how to support conversation about sexual health. METHODS: A qualitative, single-center study was conducted, including AYAs (18-29 years) diagnosed with cancer recruited at the University Hospital of Copenhagen, Rigshospitalet. Individual semi-structured interviews were conducted from January-February 2023, recorded, transcribed verbatim, and analyzed using thematic analysis. RESULTS: Twelve participants were interviewed, aged 20-29; five were diagnosed with hematological- and seven with oncological cancer. Our analyses yielded three themes: (1) sexuality and body image as part of the identity, (2) excluding relatives in conversations about sexual health, and (3) uncertainty how to discuss sexual health with healthcare professionals. Finally, the AYAs' suggestions to support conversations about sexual health were organized into six thematic categories. CONCLUSION: In this study, participants experienced altered sexual subsequent impacts on body image and self-esteem during their cancer trajectory. While some adapted to these changes, discussing them with healthcare providers was difficult, especially in the presence of relatives, as the AYAs wanted to shield them from additional concerns. To enhance support, AYAs suggest regular discussions on sexual health and the use of a dialog tool by healthcare professionals.

Development of Quality of Life in Adolescents and Young Adults With Cancer Using a Patient Support Smartphone App: Prepost Interventional Study.

BACKGROUND: Adolescents and young adults often experience existential concerns in addition to side effects during a cancer trajectory, which they often carry alone. Thus, cohesion with other adolescents and young adults with cancer is essential but difficult due to the relatively small, widely dispersed nationwide population. In cocreation, a smartphone app has been developed and includes an information bank, a symptom tracker, and a social community platform, aiming to improve the quality of life (QoL) in this patient group. OBJECTIVE: This nationwide, multicenter study aimed to investigate the QoL in adolescents and young adults undergoing a cancer trajectory as they used the app for 6 weeks. METHODS: Via youth support initiatives, participants were recruited from hospitals in all regions of Denmark. Inclusion criteria were patients with cancer aged 15-29 years who either initiated any cancer treatment or started follow-up after cancer treatment within 30 days. Participants used the adolescents and young adults cancer app for 6 weeks. Before and after the 6 weeks of app use, they completed the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core 30 (EORTC QLQ-C30). The participants were divided into a treatment and a follow-up group for analysis. A high score for a functional scale or the global health or overall QoL represents a high or healthy level of functioning or high QoL, respectively; however, a high score for a symptom scale or item represents a high level of symptomatology. RESULTS: Overall, 81 participants were recruited. However, 4 participants did not answer the questionnaire and 6 participants did not use the app. In the treatment group (n=36), significant improvement was found in 2 domains: "Role functioning" (baseline median 33.33, IQR 16.67-83.33 vs 6 weeks median 66.67, IQR 33.33-83.33; P=.04) and "Pain" (baseline median 33.33, IQR 16.67-50.00 vs 6 weeks median 16.67, IQR 0.00-33.33; P=.04). The "Global health/Overall QoL" scale remained stable (baseline median 58.33, IQR 45.83-77.08 vs 6 weeks median 62.50, IQR 41.67-75.00; P=.25). In the follow-up group (n=35), significant improvement was found in 3 domains: "Physical functioning" (baseline median 79.23, IQR 73.33-93.33 vs 6 weeks median 82.86, IQR 73.33-100.00; P=.03), "Cognitive functioning" (baseline median 62.38, IQR 50.00-83.33 vs 6 weeks median 69.52, IQR 50.00-100.00; P=.02), and "Social functioning" (baseline median 76.19, IQR 50.00-100.00 vs 6 weeks median 85.71, IQR 83.33-100.00; P=.05), as well as in the "Global health/Overall QoL" scale (baseline median 57.14, IQR 83.33-100.00 vs 6 weeks median 75.0, IQR 62.91-85.73; P<.001). CONCLUSIONS: In this study, we found an improvement in specific QoL scales for both participants in treatment and follow-up when using the app for 6 weeks. The global health or overall QoL score improved significantly in the follow-up group. In the treatment group, it remained stable. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.2196/10098.

Research involvement and engagement of adolescent and young adults in a cancer trajectory: a 5-year experience from a patient support facility at a university hospital.

BACKGROUND: The purpose of this case study is to describe how a vulnerable group of patients can be included in research. The activities, challenges, lessons learned, and reflections on the importance of patient involvement in research for 5 years (2016-2021) at the adolescent and young adult (AYA) cancer support facility, Kræftværket, are reported. MAIN BODY: A patient panel at Kræftværket, the Youth Panel has multiple aims, one of which is the ability to perform patient involvement in research, with the goal of achieving research of high quality. We here describe how Patient and Public involvement (PPI) can be customized to AYAs in a cancer trajectory, who face many challenges, including those in the physical, psychological, and social domains. During 2016-2021, Youth Panel meetings were planned every third month but interrupted during the COVID-19 pandemic. With a flexible structure and a dynamic panel including 10-15 varying AYAs in a cancer trajectory, engagement and involvement have been maintained. Eight research topics were investigated, seven of which were discussed and confirmed to be important by the Youth Panel. Out of eight topics, three were raised by patients, and five by researchers. One was not discussed due to COVID-19. Some of the challenges we have experienced were related to the flexible meeting structure and the differing expectations and priorities as well as the impact of COVID-19. However, we experienced that patient involvement is possible in the field of AYA oncology if a trusting environment is created. A key finding in our case study was, that without a national Danish PPI program and no defined international standard for PPI in AYA cancer research yet, we were able to give patients the possibility to give input to researchers on topics where research is missing. CONCLUSION: Here, we demonstrate how patient involvement in research has been performed at an AYA cancer facility, Kræftværket, during a 5-year period. We encourage others to perform patient-involving research, even in challenging populations. Ideally this must follow international standards for PPI in AYA cancer research when such exist to improve research with crucial insight from patients.

In this paper, we describe patient involvement in research at Kræftværket, a youth support center and social organization for AYAs in a cancer trajectory. The center is located at The University Hospital Rigshospitalet in Copenhagen, Denmark. Youth panel meetings are Kræftværkets' most central patient involvement activity, and one of its aims is to facilitate high-quality patient-initiated research. AYA cancer patients are a vulnerable group facing huge psycho-social challenges and symptoms that make normal functioning difficult. Therefore, the youth panel is designed to be flexible in its structure, so participants do not have to commit themselves as permanent members. The youth panel meets four times a year, and during the period 2016­2021, it has been involved in eight research topics. Challenges include the flexible meeting structure, different expectations, and priorities as well as the impact of COVID-19. However, patient involvement has been possible because of a trusting environment with strong nurse-led support for the participants. We hope to encourage others to argue for and carry out meaningful patient-involving research to improve tomorrow's quality of AYA cancer care.

Thoughts about fertility among female adolescents and young adults with cancer: a qualitative study.

PURPOSE: Nine hundred female adolescents and young adults (AYAs) aged 15-39 are diagnosed with cancer in Denmark annually. Advances in cancer therapy have led to increased long-term survival; however, a serious side effect of cancer therapy is reduced fertility. The aim of our study was to explore the thoughts about fertility among female AYAs with cancer. METHODS: Our study was conducted from September 2020 to March 2021 at the Copenhagen University Hospital, Rigshospitalet. Inclusion criteria were female AYAs with cancer aged 18-39. Twelve individual, semi-structured, qualitative interviews were performed with female AYAs with cancer (20-35 years). Data were analysed using thematic analysis. RESULTS: Four main themes were found: (1) the female AYAs held on to a hope of having children in the future; (2) the female AYAs experienced time pressure and waiting time as a sprint as well as a marathon; (3) the female AYAs faced existential and ethical choices about survival and family formation; and (4) the female AYAs felt a loss of control of their bodies. CONCLUSION: Our study contributes with knowledge on how important holding on to the hope of children in the future is among female AYAs with cancer. Meanwhile, they are frustrated by the rushed decision on fertility preservation at diagnosis. The female AYAs also have existential and ethical concerns related to the choice of cancer therapy and fertility preservation. Finally, they suffer from altered body image, loss of femininity, and body control due to hormone therapy.

Protocol for a prospective, longitudinal study of cognitive impairment in young patients with cancer: a multidisciplinary neuroscience approach (MyBrain).

INTRODUCTION: The aim of this research is to investigate young cancer patients' cognitive functioning and the underlying neurobiological mechanisms when cognitive functions are impaired. The MyBrain protocol is a multidisciplinary study that investigates cancer-related cognitive impairment in children, adolescents and young adults, combining neuropsychology, cognitive neuroscience and cellular neuroscience. The study is exploratory with a wide focus on trajectories of cognitive functions from diagnosis to the end of treatment and into survivorship. METHODS AND ANALYSIS: Prospective longitudinal study including patients diagnosed with non-brain cancers at age 7-29 years. Each patient is paired with a control matched on age and social circle. PRIMARY OBJECTIVE: Evaluation of neurocognitive function over time. SECONDARY OBJECTIVES: Evaluation of self-perceived quality of life and fatigue, P300 in an electroencephalography (EEG) oddball paradigm, power spectrum in resting state EEG, serum and cerebrospinal fluid levels of biomarkers of neuronal damage, neuroplasticity, proinflammatory and anti-inflammatory markers and their association with cognitive function. ETHICS AND DISSEMINATION: The study is approved by the Regional Ethics Committee for the Capital Region of Denmark (no. H-21028495), and the Danish Data Protection Agency (no. P-2021-473). Results are expected to guide future interventions to prevent brain damage and support patients with cognitive difficulties. TRIAL REGISTRATION NUMBER: The article is registered at clinicaltrials.gov NCT05840575 (https://clinicaltrials.gov/ct2/show/NCT05840575).

Experiences of Peer Communities in a Cancer Smartphone App Among Adolescents and Young Adults With Cancer.

OBJECTIVES: Adolescents and young adults (AYAs) with cancer have identified connection to online communities of same-age peers to be essential for psycho-social support. In this study, the aim was to explore AYAs with cancers' and AYA cancer survivors' use of the Kræftværket cancer app's social forum and experiences of peer communities in the forum. Differences due to gender and treatment status were investigated. DATA SOURCES: In all, 85 AYAs aged 15-29 were recruited: 46 on and 39 off cancer treatment. The use of the social forum was assessed by a questionnaire, which were analyzed using descriptive statistics, and telephone interviews were analyzed thematically by the Framework Method. CONCLUSION: Some AYAs assessed the social forum to be more valuable at time of diagnosis, while others experienced meaningful peer-support after cancer. Women were more active and diligent users than men. The following themes were found: 1) Common understanding of each other's challenges; 2) Other AYAs' stories increase the feeling of comfort but can also be difficult to accommodate; 3) A temporary and unwanted community; and 4) The interaction is personal but quickly stalls. IMPLICATIONS FOR NURSING PRACTICE: The results are relevant to the development of AYA cancer apps, with a view to strengthening peer-to-peer relationships. Although the use of the Kræftværket app was temporary, it presented a meaningful community for AYAs with cancer. The community feeling reduced loneliness and increased the sense of togetherness. The app met AYAs' needs and wishes for peer-to-peer age-appropriate cancer support, which can be implemented and provided by nurses.

How Do Young Women with Cancer Experience Oncofertility Counselling during Cancer Treatment? A Qualitative, Single Centre Study at a Danish Tertiary Hospital.

BACKGROUND: Adolescents and young adults (AYAs) with cancer are at risk of therapy-induced infertility. The importance of initial and specialized fertility counselling to this patient group is undisputed. Despite international guidelines, oncofertility counselling is still inadequate. The purpose of this study was to examine how female AYA cancer patients and survivors experienced initial and specialized oncofertility counselling, and to present their specific suggestions on how to improve the oncofertility counselling. METHODS: Twelve individual semi-structured interviews were performed with AYAs aged 20-35 with cancer or who were survivors. Participants were recruited via a youth support centre and social organization for AYAs with cancer. Data was analysed using thematic analysis. RESULTS: Three main themes were found: Support is needed for navigating the fertility information jungle; The doctor's approach determines the content of the patient consultation; Inadequate and worrying information causes mistrust and frustration. CONCLUSION: Results indicate a continuing problem regarding insufficient oncofertility counselling to AYAs with cancer. To ensure adequate and uniform information, especially in the initial oncofertility counselling, national guidelines for oncology specialists are suggested including multidisciplinary effort and collaboration between oncology and fertility specialists in mind. In addition, participants suggest focus on communication skills.

Adolescents' and young adults' experiences of a prototype cancer smartphone app.

OBJECTIVE: Smartphone cancer-related apps have been shown to meet some of the needs of adolescents and young adults (AYAs) during their cancer trajectory. However, there is a lack of apps evaluated by AYAs; thus, the quality of many of these apps has been contested. The aim of this study was to investigate the usefulness of a cancer smartphone app called Kræftværket. The AYA participants reflected on their first experiences of the app and whether it was a relevant and useful tool during and after their cancer trajectory. METHODS: A total of 20 AYA cancer patients aged 16-29 years (n = 10 on treatment, n = 10 in follow up) were provided with a prototype of the Kræftværket app during a 6-week test period (April-May 2018). After the test period, n = 17 participated in focus group interviews, which were analyzed thematically. RESULTS: The following themes were found: Sharing personal information (anonymity, safe communication, tough topics, videos and YouTube clips, tracking statistics); Normalcy (Seeing oneself reflected in in others, not alone, general and specific communities); Need for interaction (response from the app, information provided by the app, the app should give more back); and An everyday tool (integrating the app into daily routines, competition between app and Facebook group, temporary needs). CONCLUSIONS: The app was perceived to be most relevant at disease onset. During the treatment period, both diagnosis-specific information and communities were requested. There was a call for a clearer distinction between the purpose of the app and other Facebook communities and for a notification function.

Experiences of Social Isolation During the COVID-19 Lockdown Among Adolescents and Young Adult Cancer Patients and Survivors.

Purpose: COVID-19 is a worldwide pandemic affecting populations by massive lockdowns, including strict precautions and quarantines. Research on the lives of adolescents and young adults (AYAs) with cancer during the COVID-19 pandemic is highly relevant to meet potential challenges regarding their physical and mental well-being. Therefore, the purpose of this study was to investigate how AYA cancer patients and survivors experience social isolation during the COVID-19 lockdown. Methods: Individual semistructured telephone interviews were performed with 13 AYA cancer patients and survivors aged 18-29 years. All participants were users of Kræftværket, a youth support center and social organization for AYAs with cancer at The University Hospital Rigshospitalet, Denmark. Data were analyzed by using thematic analysis. Results: The following themes were found. The need for giving and receiving support, Difficulty of the community spirit, The lockdown's effect on recovery, Disrupted youth, and Being alone. Conclusion: The participants in this study experienced loneliness, anxiety, lack of psychosocial support, and lack of physical contact. In addition, lack of rehabilitation and lack of support during hospital visits, which may specifically influence the disease trajectory, were reported. Thus, health care professionals have an important task to follow up on the AYA's well-being during and after the COVID-19 lockdown. A positive side effect of the lockdown period was the experience of getting a respite to recover physically and mentally after cancer.

Experiences of involvement processes during participation in cancer service user initiatives from an adolescent and young adult perspective.

BACKGROUND: Service user participation contributes to the improvement of health care services for the betterment of conditions experienced by patients. However, there is a lack of knowledge about how adolescents and young adults (AYAs) experience involvement processes in practice and what it would take to achieve a high degree of involvement according to AYAs. OBJECTIVES: To explore: (1) how AYAs with cancer experienced involvement processes during participation in three different service user involvement initiatives (development of an app, development of a book and youth panel meetings), and (2) AYAs' perceptions of determination and collaborative areas between AYAs and professionals. METHODS: Individual semi-structured interviews were conducted with 12 AYAs with cancer aged 16-29 who had participated in at least one of the service user initiatives in Kræftværket, a youth cancer support centre and social organisation located at Copenhagen University Hospital, Denmark. We analysed data with thematic analysis. RESULTS: We identified three main themes with matching sub-themes: Working procedures (Agenda setting, Workflow, Dialogue), Knowledge sharing (AYAs' needs and ideas, Areas of expertise), Influence (Decisions, Ownership). Generally, the participants experienced an equal dialogue with professionals and felt they had the final say on decisions. CONCLUSIONS: This study produced specific suggestions on how to involve AYAs to a high extent. Based on AYAs' own perceptions of involvement, AYAs', professionals' and shared determination areas were illuminated. Additionally, the AYAs highlighted how the professionals gave feedback during co-creation processes, which may inspire future service user involvement projects.

Usability of a Mobile Phone App Aimed at Adolescents and Young Adults During and After Cancer Treatment: Qualitative Study.

BACKGROUND: Adolescent and young adult (AYA) cancer patients are seldom involved in the process of testing cancer-related apps. As such, knowledge about youth-specific content, functionalities, and design is sparse. As a part of a co-creation process of developing the mobile phone app Kræftværket, AYAs in treatment for cancer and in follow-up participated in a usability think-aloud test of a prototype of the app. Thus, the app was initiated, created, and evaluated by AYAs with cancer experience. OBJECTIVE: The aim of this study was to explore the results of a think-aloud test administered to see how the prototype of the app Kræftværket was used by AYAs in treatment for cancer and in follow-up, and to investigate the strengths and weaknesses of the app. METHODS: A total of 20 AYA cancer patients aged 16 to 29 years (n=10 on treatment, n=10 in follow-up) were provided with the first version of the co-created mobile phone app Kræftværket during a 6-week test period (April-May 2018). After the test period, 15 participated in individual usability think-aloud tests. The tests were video-recorded, transcribed verbatim, and analyzed using a thematic analysis approach. RESULTS: The thematic analysis led to the following themes and subthemes: navigation (subthemes: intuition, features, buttons, home page, profile), visual and graphic design (subthemes: overview, text and colors, photos, videos, YouTube), and usefulness (subthemes: notifications, posts, adding). The analysis identified gender differences in app utilization-female participants seemed to be more familiar with parts of the app. The app seemed to be more relevant to AYAs receiving treatment due to app functions such as tracking symptoms and searching for relevant information. Lack of notifications and incorrect counting of posts were perceived as barriers to using the app. CONCLUSIONS: Usability testing is crucial to meet the needs of the AYA target audience. AYA cancer apps should preferably be relevant, targeted, and unique, and include a tracking function and AYA-produced videos. Notifications and correct marking and ordering of posts are critical to make apps engaging and dynamic. Further research is recommended to evaluate the Kræftværket app with the input of more AYAs.

Impact of Service User Involvement from the Perspective of Adolescents and Young Adults with Cancer Experience.

Purpose: Knowledge of the impact of participating in service user involvement within a health care setting among adolescents and young adults (AYAs) with cancer is limited, and it is unclear as to what AYAs with cancer gain from their participation. Therefore, the purpose of this study was to investigate the impact of participating in service user involvement initiatives from the perspective of AYA cancer patients and AYA cancer survivors. Methods: Individual semistructured interviews were performed with 12 AYAs aged 16-29 who had been or were in current treatment for cancer. Participants were recruited from Kræftværket, a youth support center and social organization for AYAs with cancer, where they had participated in one or more service user involvement initiatives. Data were analyzed by using thematic analysis. Results: The following main themes were found (presented with subthemes in brackets): Achieving professional skills (Strengthening of the Curriculum Vitae, Inspiration for own profession, Handling new working procedures), Being considerate to others (Understanding different perspectives, Altruism), Increasing well-being (Insights into life with cancer, Social community, Giving meaning to life, Everyday life and normalcy). Conclusion: Participating in service user involvement initiatives made the AYAs feel more empowered during their illness course and complied with the personal needs and wishes of AYAs with cancer, including additional support from likeminded individuals. The participants experienced a range of benefits from participating, such as a greater sense of normalcy and increased well-being, allowing for a greater sense of control throughout their illness course.

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.

Helping Others: Reasons for Participation in Service User Involvement Initiatives from the Perspective of Adolescents and Young Adults with Cancer.

Purpose: Service user involvement, which implies involvement in decision-making processes important for organizing, developing, and evaluating health care, is sparsely investigated from the perspective of adolescents and young adults (AYAs) with cancer. Thus, the purpose of this qualitative study was to investigate AYAs' reasons for participation in service user involvement initiatives during their cancer course. Methods: Data from 12 semistructured interviews with AYA cancer patients and AYA cancer survivors aged 16-29 years were analyzed using thematic analysis. The participants had been involved in one or more service user involvement initiatives in "Kræftværket," a youth support center and social organization for AYAs with cancer in Copenhagen, Denmark. Results: Four main themes with matching subthemes were identified: Community (Being together, Developing together, and In the same boat), Normality (A new normal and Something to do), Contribution (Something at heart, Support to other AYAs, and Improving the health care system), and Codetermination (Real participation and Influence on one's own everyday life). Conclusion: Participating in service user involvement initiatives had a positive impact on the illness course of AYAs with cancer as the participation recreated a feeling of normality, codetermination of one's own everyday life, and met a wish for altruism in terms of helping others.

Hydrochloric acid prolongs the lifetime of central venous catheters in haematologic patients with bacteraemia.

INTRODUCTION: Bacteraemia in adult patients undergoing treatment for leukaemia is common and associated with profound morbidity and mortality. Infections related to the use of a central venous catheter (CVC) are difficult to eliminate with systemic antibiotics. Premature catheter removal is often due to retained biofilm infection. This study investigated if the additional use of hydrochloric acid (HCl) as an intraluminal lock solution may prolong the lifetime of the CVC. METHODS: The study was performed retrospectively based on a database including patients with a tunnelled Leonard 10 F dual or triple lumen CVC implanted who received HCl instillation due to bacteraemia during a five-year period. RESULTS: In a total of 71 cases of bacteraemia, HCl instil-lation was performed. Following HCI instillation, the CVC was not removed due to infection in 49 out of 71 patients (69%). Furthermore, 22 patients (31%) retained their CVC until the end of treatment. Non-infectious mortality (19/71), accidental pull (2/71) or mechanical CVC dysfunction (6/71) were other reasons for premature removal. Twenty-two catheters (31%) had to be removed due to ongoing infection. The median time from CVC placement until HCl instillation was 39 days. The median time from HCl instillation until removal of CVC was 58 days. The most common bacteriological findings were coagulase-negative staphylococci 34%, Enterococcus spp 14% and Escherichia coli 14%. CONCLUSIONS: The study's findings indicate that a prolonged use of CVC is possible following HCl instillation in adult haematologic patients with bacteraemia. FUNDING: none. TRIAL REGISTRATION: not relevant.

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.

Cocreated Smartphone App to Improve the Quality of Life of Adolescents and Young Adults with Cancer (Kræftværket): Protocol for a Quantitative and Qualitative Evaluation.

BACKGROUND: Adolescents and young adults with cancer face significant challenges during the course of their medical treatment and recovery from illness. Many adolescents and young adults struggle with long-term complications in the physical, psychosocial, economic, and academic domains. Mobile health (mHealth) interventions provide an innovative platform for delivering supportive care, particularly through the utilization of apps on smartphones and tablets. To create a successful mHealth intervention for adolescents and young adults, youth input and feedback is essential. The process of cocreation, in which the target app user has a direct role in dictating design and function, was utilized to create the prototype smartphone app for adolescents and young adults with cancer, "Kræftværket." OBJECTIVE: The objective of this paper is to describe the protocol for the evaluation of the Kræftværket app, a prototype app designed via cocreation, to support and improve health-related quality of life for adolescents and young adults with cancer. METHODS: The Kræftværket app has three primary features, (1) a symptom and activity diary, (2) a supportive communication network between app users, and (3) a "one-stop shop" information bank with practical information as well as links to patient organizations and other resources. The app will be evaluated in two phases, a pilot test and an implementation test. In the pilot test, the app will be launched to a test group of 20 adolescents and young adults aged 15 to 29 years, selected for equal representation amongst age group and treatment status. Patients will be allowed to utilize the app over the course of six weeks and will complete a baseline and follow-up European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core 30 (EORTC QLQ-C30) health-related quality of life inventory. In addition, participant focus group interviews will be conducted according to a semistructured interview guide. Resulting data will be analyzed using thematic analysis. Results and appropriate analysis from both the qualitative and quantitative branches of the pilot test will be discussed amongst the research group, and appropriate changes based on user feedback will be made to the app before the final project phase. In the implementation test, the app will be provided and utilized by a sample of 50 adolescents and young adults aged 15-29 years selected for equal representation amongst gender, age group, diagnosis, and treatment status over the course of 3 months. Participants will be asked to complete a baseline and follow-up EORTC QLQ-C30 HRQoL inventory. RESULTS: Pilot testing is expected to take place in February 2018, and implementation testing is expected to begin May 2018. CONCLUSIONS: It is the hope that Kræftværket app will serve as a beneficial and easily utilized product. The process of evaluating the app and its effect on quality of life will address the absence of evidence-based mHealth interventions, and attempt to validate new approaches to benefitting adolescents and young adult oncology patients in the digital world. REGISTERED REPORT IDENTIFIER: RR1-10.2196/10098.

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.

Hacking the hospital environment: young adults designing youth-friendly hospital rooms together with young people with cancer experiences.

BACKGROUND: There is a need for youth-friendly hospital environments as the ward environment may affect both patient satisfaction and health outcomes. OBJECTIVE: To involve young people in designing youth-friendly ward environment. METHODS: We arranged a design competition lasting 42 h (Hackathon). Students in architecture, design, engineering, communication and anthropology participated (27 young adults) - forming eight groups. Adolescents and young adults (AYA) with current or former cancer experience participated as sparring partners. We provided workspace and food during the weekend. The groups presented their products to a jury and relevant stakeholders. RESULTS: The groups created eight unique design concepts. The young designers were extremely flexible listening to ideas and experiences from the young patients, which led to common features including individual and flexible design, privacy in two-bed wardrooms and social contact with other hospitalized AYA. The winning project included an integrated concept for both wardrooms and the AYA day room, including logos and names for the rooms and an 'energy wall' in the day room. CONCLUSION: A hackathon event was an effective mode of youth participation. The design concepts and ideas were in line with current evidence regarding pleasing hospital environment and youth-friendly inpatient facilities and may be applicable to other young patients.