Achieving a timely diagnosis for teenagers and young adults with cancer: the ACE "too young to get cancer?" study.

BACKGROUND: Time to diagnosis (TTD) concerns teenagers and young adults (TYA) with cancer and may affect outcome. METHODS: Healthcare records from 105 TYA in a regional cancer service were assessed to document events from 1st symptom to treatment start. Detailed pathway construction was possible for 104 patients and allowed a multidisciplinary panel review of each pathway with assessment of good practice and lessons for the future. RESULTS: 1st presentation was to primary care in 86, and 93% consulted in primary care before diagnosis. Routes to Diagnosis were 45% via urgent 2 Week Wait pathways and 38% as emergency referrals. Total Interval (time from 1st presentation to treatment start) was median 63 (range 1-559) days, varying within/between diagnoses. Patient interval (time from 1st symptom to 1st presentation) was longest for lymphoma, carcinoma and bone tumour (medians: 9, 12, 20 days). Overall, time in primary care was short (median 3, range 0-537 days) compared to secondary care (median 29, range 0-195 days) and longest for lymphoma, carcinoma, brain/CNS (medians: 10, 15, 16 days). Specialist Care interval (time from 1st specialist visit to treatment start) was longest for bone, brain/CNS, lymphoma, carcinoma (medians: 30, 33, 36, 48 days). 40% pathways were rated as showing good/best practice but 16% were less than satisfactory. Continued safety-netting/support was identified from primary care but analysis suggested opportunities for improvement in transition through secondary care. CONCLUSIONS: Previous reports of prolonged TTD have focused on delay in referral from primary care but this study suggests that this might be reduced by optimising management in secondary care.

Implementing a Pediatric Pulmonary Embolism Response Team Model: An Institutional Experience.

Pulmonary embolism is increasing in prevalence among pediatric patients; although still rare, it can create a significant risk for morbidity and death within the pediatric patient population. Pulmonary embolism presents in various ways depending on the patient, the size of the embolism, and the comorbidities. Treatment decisions are often driven by the severity of the presentation and hemodynamic effects; severe presentations require more invasive and aggressive treatment. We describe the development and implementation of a pediatric pulmonary embolism response team designed to facilitate rapid, multidisciplinary, data-driven treatment decisions and management.

Health care professional perceptions of online information and support for young people with cancer in the United Kingdom.

PURPOSE: The internet is integral to young people, providing round-the-clock access to information and support. Young people with cancer report searching for online information and support. What they search for and why varies across their timeline and is mainly driven by negative emotion. We sought to understand how health care professionals (HCPs) perceived online information and support for young people with cancer. POPULATION AND METHODS: Semi-structured interviews with eight HCPs across the UK informed the development of a survey, completed by 38 HCPs. Framework analysis was used to identify key themes and the survey was analyzed descriptively. RESULTS: Seven themes emerged as integral to HCP's perceptions of online information and support, these included: views about young people's use of online resources; how needs change along the cancer timeline; different platforms where HCPs refer young people to online; whether young people's online needs are currently met; recognition of the emotional relationship between young people and the internet; barriers and concerns when referring young people to online resources; and strategies used in practice. CONCLUSION: Professionals play an important role in signposting young people to online resources, where they are confident about the accuracy and delivery of information. The biggest perceived barrier to facilitating online access was the cost to the NHS, and most concerning factor for HCPs was keeping young people safe online. There is a need to develop online resources specific for young people on psychosocial topics beyond treatment to support young people and HCPs through this period.

Understanding and Utilizing the Unmet Needs of Teenagers and Young Adults with Cancer to Determine Priorities for Service Development: The Macmillan On Target Programme.

Purpose: A systematic attempt to identify and address unmet needs among patients in a large regional teenagers and young adults (TYA) cancer service in the United Kingdom, including perspectives obtained from patients themselves, their families/supporters, and professionals. Methods: Questionnaires, focus groups, and interviews were undertaken with the following: patients (diagnosed ≥16 years, and aged 16-24 years at the time of study)-participation was 42 for questionnaire, 7 for focus group, and 6 for interview; family members/others in patients' lives ("networkers") (participation: 28, 0, and 4); and professionals (participation: 54, 0, and 97). Requirement management methodology was used to specify components for potential service interventions, which were then scored and prioritized. Co-creation was utilized to incorporate a deeper understanding of patient experience. Results: 42/108(39%) patients, 28/177(24%) networkers, and 122/322(38%) professionals participated. For patients, seven themes that "mattered most" (identified by >60% responders) were defined. For many, support was provided both to a lesser extent than needed and was sometimes unsatisfactory. For networkers, results identified the significant support offered by those around the patient and the impact on their own lives. For professionals, consensus was reached on interventions that could be utilized in clinical encounters with TYA to enhance care. A list of prioritized "requirements" was created to drive future service improvement. Conclusions: Areas identified for development included three specific initiatives applicable to other TYA services: a support website (www.tyahelp.co.uk); an electronic, age/developmentally specific, holistic needs assessment tool (the Integrated Assessment Map www.tyaiam.co.uk); and a portal linking use of the IAM to resources within the Help website (video illustration available at: https://vimeo.com/191019826).

Online information and support needs of young people with cancer: a participatory action research study.

PURPOSE: The Internet is a fully integrated part of young people's life and it is pivotal that online resources are developed to maximize the potential of the Internet to support those living with and beyond cancer. We sought to understand how young people with a cancer diagnosis use the Internet and to what extent information and support needs are met by existing online resources. PATIENTS AND METHODS: This was a participatory action research study involving 21 young people participating in workshops and individual interviews. Participants aged 13-24 years were diagnosed with a range of cancers. Young people were on treatment or had completed treatment; some had experienced relapse. Workshops consisted of participatory methods including focus group discussions, interactive activities, and individual thought, encompassing online resources used; when, how and what they were searching for, whether resources were helpful and how they could be improved. RESULTS: Young people reported using communication platforms, entertainment sites, social media, medical websites, charity websites, and search engines to find information and support. Different online use and needs were described throughout their cancer timeline and online use was generally driven by negative emotions. Seven factors influenced access and engagement: 1) where young people were on their cancer timeline; 2) external influencing factors, such as family and environments; 3) emotional drivers; 4) what young people search for online; 5) resources, websites, and digital platforms used by young people; 6) availability, accessibility, and assessment of online information and resources; 7) emotional responses to using online resources. CONCLUSION: The way young people access and engage with online resources is complex with multiple influencing factors including powerful emotional drivers and responses to Internet searching. There is a need to develop resources that support the holistic needs of young people and this should be done in collaboration with young people.

Establishing content validity of the oral assessment guide in children and young people.

There is a need for accurate and consistent oral assessment to measure mucosal changes and oral complications associated with cancer therapies. Mucositis is an important and common side effect of cancer therapies that merits the identification of improved health-care interventions. Developing appropriate and reliable oral assessment instruments for use with children is relevant to the evaluation of these interventions. The purpose of this study was to determine the content validity of the oral assessment guide (OAG) in children: an instrument that was designed to objectively assess the physiological changes of the oral cavity following administration of chemotherapy and radiotherapy to adults. This process is considered to be most effective when undertaken systematically. A judgement quantification process was used with health care professionals in paediatric oncology to establish content validity of items (n=9) and instrument (n=10). A revised OAG more pertinent to children and young people was produced in the light of this process.