Associations between diagnostic time intervals and health-related quality of life, clinical anxiety and depression in adolescents and young adults with cancer: cross-sectional analysis of the BRIGHTLIGHT cohort.

BACKGROUND: The association of diagnostic intervals and outcomes is poorly understood in adolescents and young adults with cancer (AYA). We investigated associations between diagnostic intervals and health-related quality of life (HRQoL), anxiety and depression in a large AYA cohort. METHODS: Participants aged 12-24 completed interviews post-diagnosis, providing data on diagnostic experiences and the patient-reported outcomes (PROs) HRQoL, anxiety and depression. Demographic and cancer information were obtained from clinical and national records. Six diagnostic intervals were considered. Relationships between intervals and PROs were examined using regression models. RESULTS: Eight hundred and thirty participants completed interviews. In adjusted models, across 28 of 30 associations, longer intervals were associated with poorer PROs. Patient intervals (symptom onset to first seeing a GP) of ≥1 month were associated with greater depression (adjusted odds ratio (aOR):1.7, 95% Confidence Interval (CI):1.1-2.5) compared to <1 month. ≥3 pre-referral GP consultations were associated with greater anxiety (aOR:1.6, CI:1.1-2.3) compared to 1-2 consultations. Symptom onset to first oncology appointment intervals of ≥2 months was associated with impaired HRQoL (aOR:1.8, CI:1.2-2.5) compared to <2 months. CONCLUSIONS: Prolonged diagnostic intervals in AYA are associated with an increased risk of impaired HRQoL, anxiety and depression. Identifying and delivering interventions for this high-risk group is a priority.

Reporting the whole story: Analysis of the 'out-of-scope' questions from the James Lind Alliance Teenage and Young Adult Cancer Priority Setting Partnership Survey.

OBJECTIVE: We conducted a UK-wide survey to identify the top 10 research questions for young people's cancer. We conducted secondary analysis of questions submitted, which were 'out-of-scope' of the original survey aim. We sought to disseminate these questions, to inform practice, policy and the development of potential interventions to support young people with cancer. DESIGN: James Lind Alliance Priority Setting Partnership. PARTICIPANTS: Young people aged 13-24 with a current/previous cancer diagnosis, their families/friends/partners and professionals who work with this population. METHODS: Eight hundred and fifty-five potential research questions were submitted, and 326 were classified as 'out-of-scope'. These questions, along with 49 'free-text' comments, were analysed using thematic analysis. RESULTS: The 375 out-of-scope questions and comments were submitted by: 68 young people, 81 family members/partners/friends and 42 professionals. Ten overarching themes were identified: diagnostic experience; communication; coordination of care; information needs and lack of information; service provision; long-term effects and aftercare support; family support; financial impact; end-of life care; and research methods and current research. CONCLUSIONS: The need to tailor services, information and communication is a striking thread evidenced across the 'out-of-scope' questions. Gaps in information highlight implications for practice in revisiting information needs throughout the cancer trajectory. We must advocate for specialist care for young people and promote the research priorities and these findings to funding bodies, charities, young people and health and social care policymakers, in order to generate an evidence base to inform effective interventions across the cancer trajectory and improve outcomes. PATIENT/PUBLIC CONTRIBUTIONS: Patients and carers were equal stakeholders throughout.

The support and information needs of adolescents and young adults with cancer when active treatment ends.

BACKGROUND: The end of active treatment is a period of high stress for young people with cancer, but limited literature exists about their information and support needs during this phase. This study aimed to understand the needs of young people with cancer, how these needs are currently being met, and how best to provide information and support at the end of active treatment. METHODS: This was a multi-stage, mixed methods study exploring the end of treatment experience from the perspectives of young people, and the healthcare professionals caring for them. Semi-structured interviews were undertaken with healthcare professionals, which informed a survey administered nationally. Subsequently, semi-structured interviews were conducted with young people. These combined results informed a co-design workshop to develop recommendations. RESULTS: Telephone interviews were conducted with 12 healthcare professionals and 49 completed the online survey. A total of 11 young people aged 19-26 years (female = 8; 73%) were interviewed. The stakeholder workshop was attended by both healthcare professionals (n = 8) and young people (n = 3). At the end of treatment young people experience numerous ongoing physical issues including pain, fatigue and insomnia; in addition to a range of psychosocial and emotional issues including anxiety, fear of recurrence and isolation. The top three priorities for end of treatment care were: earlier provision and preparation around on-going impact of cancer and cancer treatment; standardised and continued follow-up of young people's emotional well-being; and development of more information and resources specific to young people. CONCLUSION: The access and availability of appropriate information and sources of support at the end of treatment is variable and inequitable. Young people's needs would be more effectively met by timely, structured and accessible information, and support provision at the end of treatment to both prepare and enable adaptation across their transition to living with and beyond cancer. This will require both organisational and practical adjustments in care delivery, in addition to a renewed and updated understanding of what the 'end of treatment' transition process means.

Development of a patient-reported experience questionnaire for patients with sarcoma: the Sarcoma Assessment Measure (SAM).

PURPOSE: The aim of the study was to develop a patient-reported outcome measure for patients with sarcoma-the Sarcoma Assessment Measure (SAM). METHODS AND RESULTS: The systematic development of SAM included a three-stage, mixed-methods study using semi-structured interviews, focus groups and questionnaires, with all stages involving patients from across the United Kingdom. In-depth interviews were conducted with 121 patients (50% male; aged 13-82; with soft tissue sarcoma (62%), bone tumours (28%) and gastrointestinal stromal tumours (10%)). Content analysis of the interview transcripts identified 1415 post-diagnosis experience statements. Experience statements were reviewed, repetition was removed and sentences were refined to form 395 'items' which were included in an Item Reduction Questionnaire (IRQ) grouped as physical, emotional, social and financial wellbeing and sexuality. The IRQ was completed by 250 patients who rated each item on importance and worry. Items with a mean score above 5 (6 in the emotional domain) were removed, which reduced the list to 166 items. After review by the research team, 23 clinicians and 34 patients, 66 items were retained to test content validity. Items with a content validity ratio of < .33 were removed. Cognitive interviews were conducted with 10 patients on the final 22 items to test comprehension. Minor changes were made to four. CONCLUSION: SAM comprises of 22 items reflecting physical, emotional, social, financial wellbeing and sexuality. This systematic process of using patient experience to develop the content of SAM will ensure that it measures what is important to patients.

Enhancing accrual to clinical trials of adolescents and young adults with cancer.

Underrepresentation of young people in cancer research is an international phenomenon and may contribute to poorer outcomes. We sought to identify systematically tested interventions and strategies to improve recruitment. The review identified 13 papers. The following four themes emerged: trial availability/regulatory factors; service configuration/place-of-care factors; recruitment methods and developmental factors specific to young people. We could not identify any studies that had employed prospective interventions to improve recruitment. Without available research studies in which to garner data on adolescents and young adults, we will always be constrained in our ability to provide evidence based care with resultant limitations on our ability to improve outcomes.

Issues experienced and support provided to adolescents and young adults at the end of active treatment for cancer: A rapid review of the literature.

INTRODUCTION: The end of active treatment is a stressful period for adolescents and young adults (AYA), but little is known about AYA experiences at this time point. The aim was to describe the issues young people experienced and identify interventions to support AYA at the end of treatment. METHODS: We conducted a rapid review of published primary research to identify what is currently known about AYA experiences of the end of treatment, the issues which arise and existing interventions to support AYA at this time. RESULTS: Searches identified 540 papers of which 16 met the inclusion criteria. Five main themes were identified: physical/medical issues; psychological, social and emotional issues; information and support needs; sources of information and support; and difficulties accessing information and support. Within these broader themes, several subthemes were identified and explored further. CONCLUSION: Adolescents and young adults are under prepared for the unpredictable and ongoing nature of the physical, psychological and social issues they face at the end of cancer treatment. Enabling young people's inclusion within their relevant social and educational peer networks should be a priority. Timely, structured and equitable information/support is needed to prepare AYA for treatment ending and subsequent reintegration to "everyday" life.

Novel participatory methods of involving patients in research: naming and branding a longitudinal cohort study, BRIGHTLIGHT.

BACKGROUND: Patient and public involvement (PPI) is central to research and service planning. Identifying effective, meaningful ways of involvement is challenging. The cohort study 'Do specialist services for teenagers and young adults with cancer add value?' follows young people for three years, examining outcomes associated with specialist care. Participant retention in longitudinal research can be problematic potentially jeopardising study completion. Maximising study awareness through high impact branding and publicity may improve study retention. Study names are typically generated by researchers rather than designed with patients. We aimed to involve young people in developing a brand identity and name to 'Do specialist services for teenagers and young adults with cancer add value?'. METHODS: Nine young people aged 17-26 years diagnosed with cancer when aged 14-25 years participated in a one day workshop with further data collection at a patient conference. Methodology was similar to conventional branding and naming exercises and was divided into six stages. The workshop comprised five stages. Stage 1: 'What's in a brand' allowed young people to enquire why brands/logos are important, Stage 2: 'Brand Transformation' identified what young people needed to know and believe about the study when approached about participation, Stage 3: 'Brand Essence' determined how we wanted the study to be perceived by young people, Stage 4: 'What's in a name' identified potential names for the study. Stage 5: 'Logo creation' assembled the mood and feel of logos. Stage 6 was logo design and an electronic survey of 249 young people attending a patient conference. RESULTS: BRIGHTLIGHT was the final study name and the brand essence (or study personality) was friendly, supportive and inspiring. Four logos were designed and the final logo received 47% (n = 115) of votes. CONCLUSIONS: Acceptance and retention to BRIGHTLIGHT is higher than anticipated (80% versus 60%), this may be related to our integral PPI strategy. We propose this reproducible methodology as an important, enjoyable, and novel way of involving patients in research and a welcome alternative to researcher-developed acronyms. Ideally this should be carried out prior to engaging with healthcare professionals to prevent confusion around study identity.

Development and validation of the BRIGHTLIGHT Survey, a patient-reported experience measure for young people with cancer.

BACKGROUND: Patient experience is increasingly used as an indicator of high quality care in addition to more traditional clinical end-points. Surveys are generally accepted as appropriate methodology to capture patient experience. No validated patient experience surveys exist specifically for adolescents and young adults (AYA) aged 13-24 years at diagnosis with cancer. This paper describes early work undertaken to develop and validate a descriptive patient experience survey for AYA with cancer that encompasses both their cancer experience and age-related issues. We aimed to develop, with young people, an experience survey meaningful and relevant to AYA to be used in a longitudinal cohort study (BRIGHTLIGHT), ensuring high levels of acceptability to maximise study retention. METHODS: A three-stage approach was employed: Stage 1 involved developing a conceptual framework, conducting literature/Internet searches and establishing content validity of the survey; Stage 2 confirmed the acceptability of methods of administration and consisted of four focus groups involving 11 young people (14-25 years), three parents and two siblings; and Stage 3 established survey comprehension through telephone-administered cognitive interviews with a convenience sample of 23 young people aged 14-24 years. RESULT: Stage 1: Two-hundred and thirty eight questions were developed from qualitative reports of young people's cancer and treatment-related experience. Stage 2: The focus groups identified three core themes: (i) issues directly affecting young people, e.g. impact of treatment-related fatigue on ability to complete survey; (ii) issues relevant to the actual survey, e.g. ability to answer questions anonymously; (iii) administration issues, e.g. confusing format in some supporting documents. Stage 3: Cognitive interviews indicated high levels of comprehension requiring minor survey amendments. CONCLUSION: Collaborating with young people with cancer has enabled a survey of to be developed that is both meaningful to young people but also examines patient experience and outcomes associated with specialist cancer care. Engagement of young people throughout the survey development has ensured the content appropriately reflects their experience and is easily understood. The BRIGHTLIGHT survey was developed for a specific research project but has the potential to be used as a TYA cancer survey to assess patient experience and the care they receive.

Available, accessible, aware, appropriate, and acceptable: a strategy to improve participation of teenagers and young adults in cancer trials.

Under-representation of teenagers and young adults in clinical trials for cancer is acknowledged internationally and might account for the lower survival gains noted for this group. Little research has focused on strategies to increase participation of teenagers and young adults in clinical trials. We applied a conceptual framework for barriers to recruitment of under-represented populations to data for cancer clinical trials in teenagers and young adults. We did a systematic analysis of data for clinical trial enrolment in Great Britain over 6 years (2005-10), and reviewed the published work for the origins and scientific rationale of age eligibility criteria in clinical trials for cancer. Our Review revealed little scientific evidence for use of age eligibility criteria in cancer clinical trials. Participation in cancer trials fell as age increased. Between 2005 and 2010, participation rates increased for children and young people aged 0-24 years. The highest increase in participation was for teenagers aged 15-19 years, with smaller improvements in rates for 20-24 year olds. Improvements were related to five key criteria, the five As: available, accessible, aware, appropriate, and acceptable. In studies for which age eligibility criteria were appropriate for inclusion of teenagers or young adults or amended during the study period, participation rates for 15-19 year olds were similar to those for 10-14 year olds. We propose a conceptual model for a strategic approach to improve recruitment of teenagers and younger adults to clinical trials for cancer, with use of the five As, which is applicable worldwide for investigators, regulatory authorities, representatives in industry, policy makers, funders, and health-care professionals.

The Impact of Specialist Care on Teenage and Young Adult Patient-Reported Outcomes in England: A BRIGHTLIGHT Study.

Purpose: In England, health care policy promotes specialized age-appropriate cancer services for teenagers and young adults (TYA), for those aged 13-24 years at diagnosis. Specialist Principal Treatment Centers (PTCs) provide enhanced age-specific care for TYA, although many still receive all or some of their care in adult or children's cancer services. Our aim was to determine the patient-reported outcomes associated with TYA-PTC based care. Methods: We conducted a multicenter cohort study, recruiting 1114 TYA aged 13-24 years at diagnosis. Data collection involved a bespoke survey at 6,12,18, 24, and 36 months after diagnosis. Confounder adjusted analyses of perceived social support, illness perception, anxiety and depression, and health status, compared patients receiving NO-TYA-PTC care with those receiving ALL-TYA-PTC and SOME-TYA-PTC care. Results: Eight hundred and thirty completed the first survey. There was no difference in perceived social support, anxiety, or depression between the three categories of care. Significantly higher illness perception was observed in the ALL-TYA-PTC and SOME-TYA-PTC group compared to the NO-TYA-PTC group, (adjusted difference in mean (ADM) score on Brief Illness Perception scale 2.28 (95% confidence intervals [CI] 0.48-4.09) and 2.93 [1.27-4.59], respectively, p = 0.002). Similarly, health status was significantly better in the NO-TYA-PTC (ALL-TYA-PTC: ADM -0.011 [95%CI -0.046 to 0.024] and SOME-TYA-PTC: -0.054 [-0.086 to -0.023]; p = 0.006). Conclusion: The reason for the difference in perceived health status is unclear. TYA who accessed a TYA-PTC (all or some care) had higher perceived illness. This may reflect greater education and promotion of self-care by health care professionals in TYA units.

The Sarcoma Assessment Measure (SAM): Preliminary Psychometric Validation of a Novel Patient-Reported Outcome Measure.

The Sarcoma Assessment Measure (SAM) was developed as a sarcoma-specific patient-reported outcome measure to be used in clinical practice. We have reported in detail how SAM has been developed in collaboration with patients and healthcare professionals. The aim of this paper is to report the preliminary validation of SAM. The 22-item SAM was administered alongside a validated quality of life questionnaire and measure of activities of daily living. Linear modelling was used to build a measure, which had predictive validity in comparison to more established outcome measures. Of the 762 patients who participated in the study, 44.1% identified as male, and participant age ranged from 13 to 82 years. Clinically, participants presented with a range of soft tissue (82.2%) and bone (21.8%) sarcomas. Our preliminary analysis indicates that SAM accounts for 35% of the global quality of life scale and 18% of the Toronto Extremity Salvage Scale (TESS); so psychometrically, it overlaps with quality of life and activities of daily living, but also measures distinct concerns. This demonstrates that this measure picks up issues that are important to patients with sarcoma that are not reflected in other measures. We have established the preliminary validity of SAM and believe it has utility as a patient-reported outcome measure both as a research tool and for assessing the impact of symptoms and dysfunction related to sarcoma as part of clinical care. Further validation using a larger and more clinically diverse sample is now needed.

Evaluation of the impact of redeployment during the COVID-19 pandemic: results from a multi-centre survey.

Background: The COVID-19 pandemic brought unprecedented upheaval for healthcare systems globally. Rapid changes in the way nurses were asked to work brought about many challenges, especially with the requirement for nurses to move into intensive care and high dependency areas to deliver care for the increasing number of critically ill patients. Aim: The purpose of this evaluation was to assess the impact of these changes on nurses who were redeployed during the first acute phase of the pandemic and explore factors associated with burnout. Methods: A redeployment survey, containing 42 items in four domains (preparation for redeployment, safety and support, perceived competence, reflections and emotional impact) was administered online to nurses who had been redeployed in two hospitals in England, one urban and one rural. Bivariate correlations and a multiple linear regression model were conducted to explore associations between perceptions of leadership, training, communication and feeling valued with levels of emotional exhaustion. Results: Valid responses were received from 240/618 (39%) nurses. The majority of respondents felt it was their duty to work where they were asked (79%), were prepared to work where needed (72%) and were consulted on changes to their working hours (55%). However, nurses were nervous about the new role (75%) and felt they had a lack of choice regarding redeployment (66%) and the way it was implemented (50%). Multiple regression analysis showed that lack of training (ß = 0.18) and feeling undervalued (ß = 0.48) was positively associated with emotional exhaustion, which accounted for 38% of the variance among redeployed nurses. Conclusions: To mitigate the risk of nurses developing burnout as a result of redeployment, there is a need for training to upskill them so they feel competent in doing the changed role. Additionally, nursing leadership needs to support nurses feeling valued as individuals in their role.

Young people's opinions of cancer care in England: the BRIGHTLIGHT cohort.

OBJECTIVES: The BRIGHTLIGHT cohort study was the national evaluation of cancer services for teenager and young adults (TYA). This was analysis of free-text survey data to better understand their experiences of cancer care. DESIGN: Cohort study SETTING: National Health Service hospitals delivering cancer care in England PARTICIPANTS: 830 young people newly diagnosed with cancer. INTERVENTIONS: Exposure to specialist care in the first 6 months after diagnosis defined as care in a TYA Principal Treatment Centre (PTC). This was categorised as follows: all care in a TYA-PTC (ALL-TYA-PTC), no care in a TYA-PTC (NO-TYA-PTC) so care delivered in a children/adult unit only and some care in a TYA-PTC with additional care in a children's/adult unit (SOME-TYA-PTC). PRIMARY OUTCOME: Data were collected through the BRIGHTLIGHT survey included free-text questions which asked patients 'what was the best aspects of their experiences of care' and 'what aspects could be improved'. These comments were analysed using content analysis. Themes were compared between categories of care, then ranked in order of frequency, ranging from the most endorsed to the least. RESULTS: Overall, young people were most positive about their healthcare team, while the area highlighted for improvement was diagnostic experience. Differences between the three groups suggested those who had some or all treatment in a TYA-PTC valued the place of care. Regardless of where TYA were treated their healthcare teams were favourably viewed. Age appropriate place of care was highlighted to be of value for those in PTCs. CONCLUSIONS: These data show the value young people placed on the care they received in TYA specific wards. Young people who accessed some or all of their care in a TYA-PTC highly endorsed their place of care as one of the best elements of their care, and it is further emphasised by those who had shared care who experienced difficulty with lack of age-appropriate care when treated outside the TYA-PTC.

Impact of leadership on the nursing workforce during the COVID-19 pandemic.

BACKGROUND: The aim was to determine how the learning about protective factors from previous pandemics was implemented and the impact of this on nurses' experience. METHODS: Secondary data analysis of semistructured interview transcripts exploring the barriers and facilitators to changes implemented to support the surge of COVID-19 related admissions in wave 1 of the pandemic. Participants represented three-levels of leadership: whole hospital (n=17), division (n=7), ward/department-level (n=8) and individual nurses (n=16). Interviews were analysed using framework analysis. RESULTS: Key changes that were implemented in wave 1 reported at whole hospital level included: a new acute staffing level, redeploying nurses, increasing the visibility of nursing leadership, new staff well-being initiatives, new roles created to support families and various training initiatives. Two main themes emerged from the interviews at division, ward/department and individual nurse level: impact of leadership and impact on the delivery of nursing care. CONCLUSIONS: Leadership through a crisis is essential for the protective effect of nurses' emotional well-being. While nursing leadership was made more visible during wave 1 of the pandemic and processes were in place to increase communication, system-level challenges resulting in negative experiences existed. By identifying these challenges, it has been possible to overcome them during wave 2 by employing different leadership styles to support nurse's well-being. Challenges and distress that nurses experience when making moral decisions requires support beyond the pandemic for nurse's well-being. Learning from the pandemic about the impact of leadership in a crisis is important to facilitate recovery and lessen the impact in further outbreaks.

Patient and public involvement to inform priorities and practice for research using existing healthcare data for children's and young people's cancers.

BACKGROUND: In the United Kingdom, healthcare data is collected on all patients receiving National Health Service (NHS) care, including children and young people (CYP) with cancer. This data is used to inform service delivery, and with special permissions used for research. The use of routinely collected health data in research is an advancing field with huge potential benefit, particularly in CYP with cancer where case numbers are small and the impact across the life course can be significant. Patient and public involvement (PPI) exercise aims: Identify current barriers to trust relating to the use of healthcare data for research. Determine ways to increase public and patient confidence in the use of healthcare data in research. Define areas of research importance to CYP and their carers using healthcare data. METHODS: Young people currently aged between 16 and 25 years who had a cancer diagnosis before the age of 20 years and carers of a young person with cancer were invited to take part via social media and existing networks of service users. Data was collected during two interactive online workshops totalling 5 h and comprising of presentations from health data experts, case-studies and group discussions. With participant consent the workshops were recorded, transcribed verbatim and analysed using thematic analysis. RESULTS: Ten young people and six carers attended workshop one. Four young people and four carers returned for workshop two. Lack of awareness of how data is used, and negative media reporting were seen as the main causes of mistrust. Better communication and education on how data is used were felt to be important to improving public confidence. Participants want the ability to have control over their own data use. Late effects, social and education outcomes and research on rare tumours were described as key research priorities for data use. CONCLUSIONS: In order to improve public and patient trust in our use of data for research, we need to improve communication about how data is used and the benefits that arise.

Everyday data is collected on all patients treated within the National Health Service, including children and young people with cancer (CYP). This data is used routinely to improve how services are run and with special permissions, can also be used for research. Negative reporting in the media about this use of data can lead to mistrust and some people choosing not to share their data. This can reduce the quality and accuracy of research looking at rare diseases or populations with small numbers. In addition, many barriers exist to researchers when trying to access this data such as laws around data sharing, making it difficult and sometimes impossible to carry out such research. We invited CYP and carers to two workshops to: Learn about how healthcar e data is used for research. Consider ways to increase public and patient confidence in this use of healthcare data. Describe areas of research importance to CYP and their carers using healthcare data. Ten young people and six carers attended the first workshop. Four young people and four carers returned for workshop two. Workshops consisted of interactive presentations, case studies and group discussions. Overall participants felt that lack of awareness and negative media reporting led to mistrust in data use for research. It was believed that greater education about how the data is used, including positive examples of the benefits of the research, was needed to improve public confidence. Key research priorities for data use included late-effects, social and educational outcomes and rare tumours.

A Scoping Review Exploring Access to Survivorship Care for Childhood, Adolescent, and Young Adult Cancer Survivors: How Can We Optimize Care Pathways?

Childhood, adolescent, and young adult (CAYA) cancer survivors are at risk of developing late effects associated with their cancer and its treatment. Survivors' engagement with recommended follow-up care to minimize these risks is suboptimal, with many barriers commonly reported. This scoping review aims to summarize the barriers to accessing follow-up care, using the dimensions of Levesque's framework for accessing healthcare. We retrieved quantitative studies addressing barriers and facilitators to accessing survivorship care in CAYA survivors from PubMed, EMBASE and CINAHL. Data was categorized into the five healthcare access dimensions outlined in Levesque's framework: i) approachability, ii) acceptability, iii) availability and accommodation, iv) affordability, and v) appropriateness. We identified 27 quantitative studies in our review. Commonly reported barriers to accessing care included a lack of survivor and provider knowledge of cancer survivorship, poor health beliefs, low personal salience to engage in follow-up care, high out-of-pocket costs and survivors living long distances from clinical services. Many studies reported increased barriers to care during the transition from paediatric to adult-oriented healthcare services, including a lack of developmentally appropriate services, lack of appointment reminders, and a poorly defined transition process. Healthcare-related self-efficacy was identified as an important facilitator to accessing follow-up care. The transition from pediatric to adult-oriented healthcare services is a challenging time for childhood, adolescent, and young adult cancer survivors. Optimizing CAYAs' ability to access high-quality survivorship care thus requires careful consideration of the quality and acceptability of services, alongside financial and physical/practical barriers (eg distance from available services, appointment-booking mechanisms). Levesque's model highlighted several areas where evidence is well established (eg financial barriers) or lacking (eg factors associated with engagement in follow-up care) which are useful to understand barriers and facilitators that impact access to survivorship for CAYA cancer survivors, as well as guiding areas for further evaluation.

Patients' Experiences of a Sarcoma Diagnosis: A Process Mapping Exercise of Diagnostic Pathways.

Patients with sarcoma often report prolonged time to diagnosis, which is attributed to the rarity of sarcoma and the low awareness of pre-diagnostic signs and symptoms. AIMS: To describe patients' experiences of pre-diagnostic signs/symptoms and pathways to diagnosis, including where help was sought, and the processes involved. METHODS: Mixed methods involving quantitative, qualitative and inductive thematic analyses using novel process mapping of patient journey data, as reported by the patients. We examined the time from symptom onset to first professional presentation (patient interval, PI), first consultation to diagnostic biopsy, first consultation to diagnosis (diagnostic interval) and first presentation to diagnosis (total interval). RESULTS: A total of 87 interviews were conducted over 5 months in 2017. Of these, 78 (40 males/38 females) were included. The sarcoma subtypes were bone (n = 21), soft tissue (n = 41), head and neck (n = 9) and gastro-intestinal (GIST; n = 7). Age at diagnosis was 13-24 (n = 7), 25-39 (n = 23), 40-64 (n = 34) and 65+ (n = 14) years. The median PI was 13 days (1-4971) and similar between sarcoma subtypes, with the exception of GIST (mPI = 2 days, (1-60). The longest mPI (31 days, range 4-762) was for those aged 13-24 years. The median diagnostic interval was 87.5 (range 0-5474 days). A total of 21 patients were misdiagnosed prior to diagnosis and symptoms were commonly attributed to lifestyle factors. CONCLUSIONS: Prolonged times to diagnosis were experienced by the majority of patients in our sample. Further research into the evolution of pre-diagnostic sarcoma symptoms is required to inform awareness interventions.

Fear of Cancer Recurrence in Patients with Sarcoma in the United Kingdom.

Fear of cancer recurrence (FCR) is a persistent concern among those living with cancer and is associated with a variety of negative psychosocial outcomes. However, people with sarcoma have been underrepresented within this area of research. We aimed to determine the prevalence of FCR experienced by people with sarcoma in the United Kingdom and explore factors that may predict FCR, such as the perceived impact of cancer and psychological flexibility. Participants (n = 229) with soft tissue (n = 167), bone (n = 25), and gastrointestinal stromal tumours (n = 33) completed an online survey including the self-reported measures of FCR, the perceived physical and psychological impact of cancer and psychological flexibility, and demographic information. Data were analysed using ANOVA and multiple regression modelling. Mean FCR scores (M = 91.4; SD = 26.5) were higher than those reported in meta-analytic data inclusive of all cancer types (M = 65.2; SD = 28.2). Interest in receiving support for FCR was also high (70%). Significant factors associated with FCR included cognitive and emotional distress and psychological flexibility, but not perceptions of the physical impact of cancer (R2 = 0.56). The negative association between psychological flexibility and FCR suggests the potential benefit of intervention approaches which foster psychological flexibility, such as acceptance and commitment therapy.

A Qualitative Study of the Factors Influencing Patients' Experience of Soft Tissue Sarcoma in the United Kingdom.

BACKGROUND: Treatment of soft tissue sarcoma frequently involves extensive surgery, loss of mobility, and complex rehabilitation programs. Poorer patient-reported outcomes are reported in comparison to those from patients with other cancer types. Understanding patient experience is therefore important to support patients and improve care. OBJECTIVE: The aim of this study was an in-depth exploration of patients' experience of being diagnosed with soft tissue sarcoma. METHODS: Semistructured interviews and focus groups were conducted with 68 patients with soft tissue sarcoma (59% female; aged 23-82 years). These were analyzed using adapted framework analysis. RESULTS: Two overarching themes explained the factors influencing patients' experiences: individual and social factors to manage the impact of soft tissue sarcoma; and context and processes of care. Access to professionals with sarcoma expertise and services in specialist hospitals had an impact on patients' well-being. Lack of access to specialist services and coordinated care were associated with worse experiences. These were influenced by age and support from family/friends/other patients and were crucial in patients' adaptation to living with and beyond a sarcoma diagnosis. CONCLUSION: We describe factors that both negatively and positively influenced the experience of patients with soft tissue sarcoma. Access to specialist soft tissue sarcoma and rehabilitation services and support tailored to patients' age and disease trajectory are needed to improve these experiences. IMPLICATION FOR PRACTICE: Nurses are important for helping patients manage the long-term effects and directing them to supportive care services. Rehabilitation services need to be available and easily accessible.