Susie Pearce

The Art of Age-Appropriate Care: Reflecting on a Conceptual Model of the Cancer Experience for Teenagers and Young Adults

Background: There is recognition that teenagers and young adults with cancer merit age-appropriate specialist care. However, outcomes associated with such specialist care are not defined. Patient experience and patient-reported outcomes such as quality of life are gaining importance. Nevertheless, there is a lack of theoretical basis and patient involvement in experience surveys for young people. Objective: We previously proposed a conceptual model of the lived experience of cancer. We aimed to refine this model adding to areas that were lacking or underreported. The proposed conceptual framework will inform a bespoke patient experience survey for young people. Methods: Using participatory research, 11 young people aged 13 to 25 years at diagnosis, participated in a 1-day workshop consisting of semistructured peer-to-peer interviews. Results: Eight core themes emerged: impact of cancer diagnosis, information provision, place of care, role of health professionals, coping, peers, psychological support, and life after cancer. Conclusions: The conceptual framework has informed survey development for a longitudinal cohort study examining patient experience and outcomes associated with specialist cancer care. Implications for Practice: Young people must be kept at the center of interactions in recognition of their stated needs of engagement, of individually tailored information and support unproxied by parents/family. Age-appropriate information and support services that help young people deal with the impact of cancer on daily life and life after cancer must be made available. If we are to develop services that meet need, patient experience surveys must be influenced by patient involvement. Young people can be successfully involved in planning research relevant to their experience.

Developing a conceptual model of teenage and young adult experiences of cancer through meta-synthesis.

OBJECTIVES To systematically identify and analyse published research exploring teenage and young adult experience of cancer to inform the development of a patient-reported outcome survey intended to explore if a correlation exists between specialist cancer care and quality of life for young people with cancer. DESIGN Systematic review and meta-synthesis. DATA SOURCES Medline, CINAHL Plus and PsycInfo were searched for literature published between 1987 and 2011. REVIEW METHODS Search terms included those for: population (e.g. teen, young adult); intervention (e.g. cancer); outcome (e.g. experience); and study type (e.g. qualitative). INCLUSION CRITERIA adolescents and young adults were both represented; diagnosis of cancer; published in English; and used qualitative methods to report an aspect of the cancer experience. Studies were excluded if they were reporting: palliative care experience; secondary data; or proxy views, i.e. parent or health professional perspective. Methodological quality was assessed using Cesario criteria and meta-synthesis involved deconstruction and decontextualising findings to identify common themes. RESULTS Three hundred and fifteen studies were identified, 17 fulfilled the inclusion criteria. Of these, most (59%), were assessed as being high quality, none were rated poor. Nine common themes were identified: psychosocial function, importance of peers, experience of healthcare, importance of support, impact of symptoms, striving for normality, impact of diagnosis, positive experiences, and financial consequences. CONCLUSIONS The conceptual model developed from the meta-synthesis depicts the mediators and consequences of cancer care that impact on young peoples quality of life after a cancer diagnosis. The model highlights areas that require further exploration.

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

BackgroundPatient 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.MethodsA 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.ResultStage 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.ConclusionCollaborating 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.

A scoping exercise of favourable characteristics of professionals working in teenage and young adult cancer care: 'thinking outside of the box'

GIBSON F., FERN L., WHELAN J., PEARCE S., LEWIS I.J., HOBIN D. & TAYLOR R.M. (2012) European Journal of Cancer Care21, 330–339 A scoping exercise of favourable characteristics of professionals working in teenage and young adult cancer care: ‘thinking outside of the box’ A scoping exercise to define the preferred competencies of professionals involved in teenage and young adult (TYA) cancer care. Data were generated during two workshops with health professionals. In groups, they ranked skills, knowledge and attitudes, previously identified through a literature search, onto a diamond template. Data were also used from an education day with TYA professionals, who generated lists of key skills, knowledge and attitudes. Individually, professionals then selected the top five areas of competence to care for young people with cancer. The workshops generated three diamonds, which exhibited agreement of 13 principle skills, knowledge and attitudes. The top two being: ‘expertise in treating paediatric and adult cancers’ and ‘understanding cancer’. The data from the education day suggested communication, technical knowledge and teamwork as being core role features for professionals who care for young people with cancer. Integration of both datasets; one derived inductively, the other deductively provides a comprehensive outline of core skills health professionals require to be proficient in young peoples cancer care. These results will form the basis of future discussion around workforce strategies and inform a Delphi survey.

Policy and practice in teenage and young adult cancer care in England: looking to the future.

This paper outlines the current policy and service developments for the provision of cancer care for teenagers, young adults and their families in England. Key implications in terms of the settings and place of care, the centrality of the multidisciplinary team, the improvement of outcomes in TYA cancer care together with psychosocial issues are examined in more depth alongside the existing evidence base. In terms of the development of high quality, accessible specialist TYA cancer care and the development of a rigorous evidence base for the practice of TYA cancer care the next few years are crucial. The way forward is complex and challenging but the framework is in place in England to comprehensively improve the care and outcomes of teenagers and young adults with cancer.

“Your Place or Mine?” Priorities for a Specialist Teenage and Young Adult (TYA) Cancer Unit: Disparity Between TYA and Professional Perceptions

PURPOSE To identify key components of a specialist teenager and young adult (TYA) cancer unit from the perspective of young people and health professionals. PATIENTS AND METHODS A facilitated workshop was held in England at which participants prioritized 15 core features of a specialist cancer unit identified in a literature review. Themes were transferred onto cards and organized using a pyramid. Notes were made of the discussion and how decisions were reached. The exercise was repeated in a survey at a patient conference. Data were analyzed by weighting the ranked position and by content analysis. RESULTS Eleven young people and 22 health professionals attended the workshops, and 64 young people completed the survey. Young peoples top three priorities were a dedicated unit, contact with peers, and provision for partners/parents to live in the unit with them. Health professionals prioritized best chance of survival and best quality of life, access to expertise, access to computers/Internet, and age-appropriate equipment. CONCLUSIONS Priorities varied across and within healthcare professionals and young people, and were dependent on viewpoint and personal experience. This is an essential first step toward a fuller description of the benefit of specialist TYA cancer services and highlights the importance of consulting users in service development.

Young people describe their prediagnosis cancer experience

Young people often report a protracted journey to diagnosis and frequently report perceived delays. This study was undertaken to increase understanding of the self‐reported prediagnosis experiences in young people with a non‐haematological cancer, as close as possible to the time of diagnosis.

How young people describe the impact of living with and beyond a cancer diagnosis: feasibility of using social media as a research method

Young people with cancer exhibit unique needs. During a time of normal physical and psychological change, multiple disease and treatment‐related symptoms cause short and long‐term physical and psychosocial effects. Little is known about how young people cope with the impact of cancer and its treatment on daily routines and their strategies to manage the challenges of cancer and treatments. We aimed to determine how young people describe these challenges through a social media site.

An assessment of lead R&D nursing roles in acute trusts and an evaluation of their status within the NHS research agenda

For over a decade, the need to develop a robust evidence base for nursing, midwifery and health visiting through research has been part of the UK governments R&D strategy. Progress has been slow and little is known about the organisational reality of the most recent strategies. This study aimed to investigate the nature of posts with named responsibilities to lead and develop nursing and midwifery research activity, based in acute NHS hospital trusts. Data were obtained through telephone interviews with directors of nursing services, and a postal survey of relevant staff. Fifty two people responsible for nursing and midwifery R&D were invited to complete the questionnaire, of whom 34 responded. The majority of trusts were able to name an individual responsible for leading nursing R&D, although the remit of the role varied considerably. The effectiveness of implementing any national research strategy is likely to be constrained by the lack of consistency regarding nursing research roles, a factor that may also be implicated in the lack of progress in securing a meaningful contribution to NHS research from nursing R&D.

Improving the identification of cancer in young people: A scoping review

ABSTRACT Introduction: The challenges of achieving timely cancer diagnosis in adolescents and young adults are recognised. However, contributing factors and associated clinical and psychosocial outcomes are poorly understood. Areas covered: We present a scoping review of existing evidence into time intervals to diagnosis and potential mechanisms influencing the identification of cancer symptoms and impact on a timely diagnosis. Charting data using Walters ‘pathways to treatment’ we summarise the diagnostic pathway into four interval categories: appraisal, help-seeking, diagnostic, and pre-treatment, and illustrate where evidence exists and where unanswered questions remain. Expert commentary: Whilst the research base has expanded over the last decade in cancer care there continues to be limited research that reveals the complexity of the timeliness of diagnosis in this population. There are unique issues facing this age group in terms of rarity of cancer, complexity of symptoms and problems with healthcare system access that create a constellation of challenges. We offer explanations for diagnostic difficulties in this age group, and explain how, with the limited available evidence, we are still seeking solutions to what is a uniquely complex problem.