The INSCHOOL project: Young people with long-term physical health conditions: An in-depth qualitative study of their needs at school.

INTRODUCTION: The INSCHOOL project aimed to understand the school experiences and unmet needs of young people across a diversity of long-term physical health conditions. METHODS: Young people aged 11-18 years, in mainstream secondary school in the United Kingdom, with one of 11 physical health conditions were invited to unique participant-driven interviews, focus groups, or written activities. Creative preparation activities were provided to give participants increased control over the data collection and prioritize their voices. A needs analysis, in combination with participatory analysis sessions with young people, identified the common needs of participants in relation to their school lives. RESULTS: Eighty-nine young people participated from April 2022 to 2023. Analysis of their transcripts defined six common needs across all the health conditions: Need to safely manage my health at school; need for a flexible education pathway; need to be acknowledged and listened to in the right way; need to be included in and supported by the school community; need to build toward my future; need to develop attitudes and approaches to help me cope in school. CONCLUSIONS: This study has generated new, actionable knowledge by identifying six major needs that young people have in relation to the intersection of their health condition and their school life. This paper shows that a commonalities approach to research and policy development is warranted given the similarities in experiences and needs. The common needs identified in the INSCHOOL project highlight six areas where future interventions could be targeted to begin making meaningful changes for all young people with long-term health conditions.

Development and initial qualitative evaluation of a novel school-based nutrition intervention - COOKKIT (Cooking Kit for Kids).

BACKGROUND: Excess weight and an unhealthy diet are risk factors for many cancers, and in high income countries, both are more prevalent among low income families. Dietary interventions targeting primary-school aged children (under 11) can improve healthy eating behaviours, but most are not designed to support the translation of skills learnt in the classroom to the home setting. This paper assessed attitudes and approaches to cooking and eating at home, and the potential to enhance engagement in healthy eating through the COOKKIT intervention. METHODS: COOKKIT is an intervention to deliver weekly cooking classes and supportive materials for low-income families to maintain healthy eating at home. Preliminary qualitative interviews were conducted with teachers and parent-child dyads from a range of primary schools in the UK to explore attitudes, barriers and facilitators for healthy eating and inform the development of COOKKIT. Following implementation, ten children (8-9 y/o) participated in post-intervention focus groups, alongside interviews with teaching staff and parents. RESULTS: Thematic analysis identified five themes under which to discuss the children's experience of food, cooking and the impact of COOKKIT: Involving children in planning and buying food for the family; Engaging children in preparing meals at home; Trying to eat healthy meals together in the midst of busy lives; Role-modelling; and Balancing practicalities, information and engagement when delivering cooking classes. CONCLUSIONS: Results suggest COOKKIT provides engaging and easy to follow in-school resources for children and school staff with take-home kits facilitating continued engagement and reinforcing lessons learned in the home environment. Importantly, participants highlighted the combination of healthy eating information, applied practical skills and low costs could support families to continue following the COOKKIT advice beyond the intervention, suggesting further evaluation of COOKKIT is warranted.

The role of partner support for health behaviours in people living with and beyond cancer: A qualitative study.

OBJECTIVE: This study aimed to qualitatively explore how partner support for health behaviours is perceived, received, and utilised in people living with and beyond cancer (LWBC). METHODS: Semi-structured audio interviews were conducted with 24 participants, 15 men and nine women, living with and beyond breast, prostate, and colorectal cancer. Inductive and deductive Thematic Analysis was used to analyse the data. RESULTS: Three key themes with six subthemes were identified relating to partner support for health behaviours: (1) Interdependence (Reciprocity, Overt Control, Influence & Motivation) (2) Concordance (Shared Attitudes & Health Beliefs, Shared Health Behaviour) and (3) Communal Coping (Communal Orientation towards Health and Decision Making, Co-operative Action in Health Behaviour). CONCLUSIONS: Partner support plays a unique and significant role in the health behaviours of people LWBC. Partners play a collaborative role in managing health and facilitating health behaviours, while the high level of concordance in couples may represent a potential barrier to change via the reinforcement of maladaptive health beliefs and behaviours. IMPLICATIONS FOR CANCER SURVIVORS: Overall, findings demonstrate that partners should be considered and included where possible when designing future behaviour change interventions for people LWBC.

Exploring the perceived impact of social support on the health behaviours of people living with and beyond cancer during the COVID-19 pandemic: a qualitative study.

PURPOSE: Social support facilitated healthy behaviours in people living with and beyond cancer (LWBC) before the COVID-19 pandemic. Little is known about how social support impacted their health behaviours during the pandemic when social restrictions were imposed. The aim of this study was to qualitatively explore how social support was perceived to impact the health behaviours of people LWBC during the COVID-19 pandemic. METHODS: Semi-structured interviews were conducted via telephone with 24 adults living with and beyond breast, prostate and colorectal cancer. Inductive and deductive framework analysis was used to analyse the data. RESULTS: Five themes developed. These were (1) Companionship and accountability as motivators for physical activity, (2) Social influences on alcohol consumption, (3) Instrumental support in food practices, (4) Informational support as important for behaviour change and (5) Validation of health behaviours from immediate social networks. CONCLUSION: This study described how companionship, social influence, instrumental support, informational support and validation were perceived to impact the health behaviours of people LWBC during the COVID-19 pandemic. Interventions for people LWBC could recommend co-participation in exercise with friends and family; promote the formation of collaborative implementation intentions with family to reduce alcohol consumption; and encourage supportive communication between partners about health behaviours. These interventions would be useful during pandemics and at other times. Government policies to help support clinically extremely vulnerable groups of people LWBC during pandemics should focus on providing access to healthier foods.

Patient experiences of living with cancer before interaction with palliative care services in Zimbabwe: A qualitative secondary data analysis.

OBJECTIVE: Cancer patients in Zimbabwe typically access health services with advanced disease, limiting treatment choices and lessening the likelihood of positive treatment outcomes. We outline experiences of patients with advanced cancer prior to interaction with palliative care services to identify targets for future intervention development to enhance care delivery in Zimbabwe. METHODS: Participants were purposively sampled adult patients with advanced cancer. We adopted a thematic approach to guide a qualitative secondary data analysis exploring factors influencing support sought by participants, external factors influencing decision making across the disease trajectory and the process for seeking and accessing palliative care. RESULTS: Participants reported fragmented and uncoordinated care, from initial symptom experience and throughout disease progression. A recurring notion of disjuncture was present through participants' experiences of gaps, breaks and discontinuity across the disease trajectory. Each step had a beginning and end without clear routes for transition with movement between steps as a result of happenstance or informal encounters. CONCLUSION: Targets for intervention development at the patient and family level exist that may reduce the disjuncture currently experienced between need and care provision. A holistic response that incorporates engagement with policy actors is critical to addressing prominent financial constraints for patients.

Conceptualising effective symptom management in palliative care: a novel model derived from qualitative data.

BACKGROUND: Pain, breathlessness and fatigue are some of the most challenging symptoms to manage in patients with advanced disease. Specialist palliative care leads to better symptom management, but factors contributing to successful symptom management in this context have not been explored. Our aim was to understand what facilitates effective symptom management in specialist palliative care within UK hospices and investigate what barriers are experienced. METHODS: This was a grounded theory study using qualitative semi-structured focus groups and interviews. Participants were recruited from multidisciplinary specialist palliative care teams (doctors, nurses, healthcare assistants, physiotherapists, occupational therapists, complementary therapists, social workers and chaplains) working in inpatient, outpatient and community services provided by five hospices in the United Kingdom. RESULTS: We present a novel qualitative data-derived model of effective symptom management in specialist palliative care. We describe a co-ordinated, multi-faceted, sequential approach involving a process of engagement, partnership, decision-making, and delivery. Interventions to manage symptoms are less effective in psychologically distressed patients. Our data highlights that families of patients have a key role in determining effectiveness of symptom management interventions A holistic approach by a co-ordinated, multi-disciplinary team, including support to recognise and minimise psychological distress might facilitate more effective symptom management. Barriers to symptom management include team discordance and lack of understanding about symptom management by patient and families. CONCLUSIONS: Shared decision-making between patients and professionals and co-ordination of care by a multi-disciplinary team are key components of effective symptom management. Actions to address psychological distress and evaluate the understanding and expectations of patients and their families would enable more effective symptom management. A more effective multi-disciplinary approach would be facilitated by discussion within teams about role competencies and boundaries.

Patient and professional experiences of palliative care referral discussions from cancer services: A qualitative interview study.

OBJECTIVES: The aim of this paper was to identify current barriers, facilitators and experiences of raising and discussing palliative care with people with advanced cancer. METHODS: Semi-structured interviews were conducted with patients with advanced cancer and healthcare professionals (HCPs). Patients were included who had and had not been referred to palliative care. Transcripts were analysed using framework analysis. RESULTS: Twenty-four patients and eight HCPs participated. Two overarching themes and five sub-themes emerged: Theme one-referral process: timing and triggers, responsibility. Theme two-engagement: perception of treatment, prognosis and palliative care, psychological and emotional preparedness for discussion, and understanding how palliative care could benefit present and future care. CONCLUSION: There is a need to identify suitable patients earlier in their cancer trajectory, address misconceptions about palliative care, treatment and prognosis, and better prepare patients and HCPs to have meaningful conversations about palliative care. Patients and HCPs need to establish and communicate the relevance of palliative care to the patient's current and future care, and be clear about the referral process.

Managing Pain in People with Cancer-a Systematic Review of the Attitudes and Knowledge of Professionals, Patients, Caregivers and Public.

Cancer pain is a common symptom experienced by patients, caused either by the disease or its treatment. Morphine remains the most effective and recommended treatment for cancer pain. However, cancer patients still do not receive appropriate management for their pain, and under-treatment is common. Lack of knowledge and negative attitudes towards cancer pain and analgesia among professionals, patients and family caregivers are reported as one of the most common barriers to effective cancer pain management (CPM). To systematically review research on the nature and impact of attitudes and knowledge towards CPM, a systematic literature search of 6 databases (the Cochrane library, MEDLINE, PsycINFO, CINAHL, Web of Science and EMBASE) was undertaken in July 2018. Additionally, hand-searching of Google, Google Scholar and reference lists was conducted. The inclusion criteria were adult (18-65 years of age), studies which included attitudes and knowledge towards CPM, studies written in English, published literature only and cross-sectional design. Included studies were critically appraised by two researchers independently using the Joanna Briggs Institute Analytical Cross Sectional Studies Assessment (JBI-ACSSA). A total of 36 studies met the inclusion criteria. The main finding was that among professionals, patients, caregivers and the public there were similar attitudinal barriers to effective CPM. The most commonly cited barriers were fear of drug addiction, tolerance of medication and side effects of opioids. We also found differences between professional groups (physicians versus nurses) and between different countries based on their potential exposure to palliative care training and services. There are still barriers to effective CPM, which might result in unrelieved cancer pain. Therefore, more educational programmes and training for professionals on CPM are needed. Furthermore, patients, caregivers, and the public need more general awareness and adequate level of knowledge about CPM.

How teenagers continue school after a diagnosis of cancer: experiences of young people and recommendations for practice.

AIM: To understand how teenagers experience school following a diagnosis of cancer, and to offer recommendations for practice. METHODS: Using visual interviewing at three time points, 12 participants (13-16 years) from England discussed school experiences during the year following their diagnosis. Interpretative phenomenological analysis provided in-depth assessment of their individual experiences. RESULTS: One main theme emerged: regulation and calibration. Remaining engaged in school allowed teenagers to maintain noncancer versions of themselves as well as incorporating new cancer experiences. Six subthemes emerged: examinations/grading, school community, miscommunications, peers, altered appearances and normality. CONCLUSION: A total of 13 recommendations are offered for the development of education support to young people with cancer, covering the role of the school, the young person and their peers, flexibility and timing.

Qualitative Study Examining Attendance for Secondary School Pupils With Long-Term Physical Health Conditions.

For some children and young people (CYP) with long-term physical health conditions (LTPHCs) attending school can be difficult. There is a lack of evidence documenting their school attendance experiences, how schools manage absence for these children, and subsequent effects. This study utilised an existing dataset from eighty-nine 11-18-year-olds in mainstream secondary schools in the United Kingdom across 11 LTPHCs that provided first-hand accounts about the children's experiences of school. Data pre-coded "attendance" were subject to thematic analysis to explore issues emerging. Findings showed attendance patterns varied, with some CYP missing little and others significant amounts of education. Children with LTPHCs wanted to attend school and did their best to navigate education alongside health. School systems for attendance were inconsistent and adversarial. Remedial and supportive action emerged as lacking, and children felt it was their personal responsibility to make up for lost time and missed work when absent. Decisions on whether they attended school, coupled with practices promoting high attendance had detrimental consequences for CYP with LTPHCs educationally, emotionally and socially. Overall, children with LTPHCs felt punished, stigmatised, unfairly treated, unequal and excluded. Results have implications for education, health, and policy practitioners to better plan and target attention so that the LTPHC cohort are treated sensitively and equitably and afforded their entitlement to education when they cannot go to school for health reasons often outside of their control.

The impact of the COVID-19 pandemic on mental health and quality of life in people living with and beyond breast, prostate and colorectal cancer - a qualitative study.

BACKGROUND: Individuals living with and beyond cancer are at heightened risk of adverse psychological and social outcomes and experiences. In March 2020, the COVID-19 global pandemic presented a unique set of social circumstances with the potential to exacerbate the challenges faced by this population. The purpose of this study was to investigate the experiences of people living with and beyond cancer during the first year of the COVID-19 pandemic and assess the impact on psychological and social aspects of their lives. METHODS: From a pool of participants from a larger health behaviours study thirty participants were purposively sampled for characteristics including: diagnostic group (breast, prostate and colorectal cancers), gender, time since diagnosis and age. Semi-structured interviews were conducted via telephone to discuss their experience of living through the pandemic. A thematic analysis was conducted using a needs-based approach to detail the fundamental needs expressed by this population in relation to their mental health and quality of life during the pandemic. RESULTS: Three fundamental needs underpinned the experiences expressed by participants: the need to feel safe; particularly in relation to risk of contracting COVID-19 and their ongoing cancer monitoring; the need to feel connected; to the people, places, activities and practices of everyday life; and the need to make the most out of life; specifically in context of having already endured cancer and cancer treatment. Participant experiences are described in relation to how they impacted each of these three needs. CONCLUSIONS: People living with and beyond cancer have past and ongoing experiences that make them vulnerable to adverse psychosocial reactions and outcomes. Support for this population needs to provide greater clarity of risk, clearer guidelines specific to their personal circumstances, and regular updates on scheduling of important follow up care and monitoring.

Adoption of technology enabled care to support the management of children and teenagers in rheumatology services: a protocol for a mixed-methods systematic review.

INTRODUCTION: COVID-19 catalysed a rapid move to provide care away from the hospital using online communication platforms. Technology enabled care (TEC) continues to be an important driver in progressing future healthcare services. Due to the complex and chronic nature of conditions seen within paediatric rheumatology, TEC may lead to better outcomes. Despite some growth in published literature into the adoption of TEC in paediatric rheumatology, there is limited synthesis. The aim of this review is to provide a comprehensive understanding and evaluation of the adoption of TEC by patients in paediatric rheumatology services, to establish best practices. METHODS AND ANALYSIS: This proposed mixed-methods systematic review will be conducted by searching a wide variety of healthcare databases, grey literature resources and associated charities and societies, for articles reported in English language. Data extraction will include population demographics, technology intervention, factors affecting adoption of intervention and consequent study outcomes. A parallel-results convergent synthesis design is planned, with independent syntheses of quantitative and qualitative data, followed by comparison of the findings of each synthesis using a narrative approach. Normalisation process theory will be used to identify, characterise and explain implementation factors. The quality of included articles will be assessed using the Mixed Methods Appraisal Tool for research papers and the Authority, Accuracy, Coverage, Objectivity, Date, Significance checklist for grey literature. Overall confidence in quality and strength of evidence will be assessed using the Confidence in the Evidence from Reviews of Qualitative Research tool. ETHICS AND DISSEMINATION: Ethical approval is not required due to the nature of this mixed-methods systematic review. The findings will be disseminated via a peer-reviewed journal, relevant conferences and any other methods (eg, via NHS Trust or NIHR YouTube channels) as advised by paediatric rheumatology patients. PROSPERO REGISTRATION NUMBER: CRD42023443058.

'What is my risk really?': a qualitative exploration of preventive interventions among individuals at risk of rheumatoid arthritis.

Objectives: Intervention in the pre-arthritis phase of RA could prevent or delay the onset of disease. The primary aim of this study was to explore perspectives of being at risk and potential preventive interventions among individuals at risk of developing RA and to identify factors influencing their engagement with prevention. A secondary aim, established during the analytical process, was to understand and compare different approaches to health-related behaviours related to prevention of RA. Methods: Anti-CCP-positive (CCP+) at-risk individuals with musculoskeletal symptoms but no synovitis participated in semi-structured interviews. Data were analysed using reflexive thematic analysis, followed by a secondary ideal-type analysis. Results: Nineteen CCP+ at-risk individuals (10 women; age range 35-70 years) participated. Three overarching themes were identified: being CCP+ at risk; aiming to prevent RA; and influencers of engagement. Participants described distress related to symptoms and uncertainty about disease progression. Many participants had concerns about medication side effects. In contrast, most participants expressed willingness to make lifestyle changes with the aim of preventing RA. Engagement with preventive measures was influenced by symptom severity, personal risk level, co-morbidities, experiences of taking other medications/supplements, knowledge of RA, risk factors and medications, and perceived effort. Three types of participants were identified from the data: proactive preventers, change considerers and fearful avoiders. Overall orientation to health behaviours also impacted the attitude towards preventing RA. Conclusion: Findings could inform recruitment and retention in RA prevention research and promote uptake of preventive interventions in clinical practice.

The INSCHOOL project: showcasing participatory qualitative methods derived from patient and public involvement and engagement (PPIE) work with young people with long-term health conditions.

BACKGROUND: Evidence suggests resources and services benefit from being developed in collaboration with the young people they aim to support. Despite this, patient and public involvement and engagement (PPIE) with young people is often tokenistic, limited in engagement and not developmentally tailored to young people. Our paper aims to build knowledge and practice for meaningfully engaging with young people in research design, analysis and as research participants. METHODS: We report the participatory processes from the INSCHOOL project, examining long-term health conditions and schooling among 11-18 year olds. Young people were consulted at the inception of the project through a hospital-based youth forum. This began a partnership where young people co-designed study documents, informed the recruitment process, developed creative approaches to data collection, participated in pilot interviews, co-analysed the qualitative data and co-presented results. RESULTS: PPIE advisors, participants and researchers all benefitted from consistent involvement of young people throughout the project. Long-term engagement allowed advisors and researchers to build rapport and facilitated openness in sharing perspectives. PPIE advisors valued being able to shape the initial aims and language of the research questions, and contribute to every subsequent stage of the project. Advisors co-designed flexible data collection methods for the qualitative project that provided participants with choices in how they took part (interviews, focus groups, written tasks). Further choice was offered through co-designed preparation activities where participants completed one of four creative activities prior to the interview. Participants were therefore able to have control over how they participated and how they described their school experiences. Through participatory analysis meetings advisors used their first-hand experiences to inform the creation of themes and the language used to describe these themes. PPIE in every stage of the process helped researchers to keep the results grounded in young people's experience and challenge their assumptions as adults. CONCLUSIONS: Young people have much to offer and the INSCHOOL project has shown that researchers can meaningfully involve young people in all aspects of research. Consistent PPIE resulted in a project where the voices of young people were prioritised throughout and power imbalances were reduced, leading to meaningful participant-centred data.

BACKGROUND: Young people's voices are often overlooked in research about long-term health conditions, but evidence suggests involving young people improves research quality, usefulness and impact. Despite the benefits, young people are not involved in research as often or as well as they could be. METHODS: Young people were consulted during the early planning of the INSCHOOL project and began a long-term co-production partnership. Through a series of meetings, young advisors helped to design project methods, took part in pilot interviews, analysed interview data, and presented results. Co-designed activities helped participants prepare for their interviews, which was a key part in helping participants tell their own stories. RESULTS: Having young advisors throughout the research added significant value to the project design and helped the results remain grounded in young people's experiences. The co-designed methods gave participants time to prepare for interviews, which allowed them to feel more comfortable and in control of the interview process. This reduced the amount of influence the researchers had over the content of the interviews and gave young people an opportunity to describe experiences of school life that were meaningful to them. PPIE advisors, participants and researchers all benefitted from consistent involvement of young people throughout the project. Long-term engagement allowed advisors and researchers to build rapport and facilitated openness in sharing perspectives. CONCLUSIONS: Researchers should aim to engage with young people at an early stage of research to develop partnerships that allow them to shape the direction and content of the research, and how the information is analysed and presented. Co-designing methods that offer flexibility and make it easy for young people to have more control over the research process can lead to more meaningful and valuable results.

The impact of the COVID-19 pandemic on the health behaviours of people living with and beyond breast, prostate, and colorectal cancer-a qualitative study.

PURPOSE: Positive health behaviours (sufficient exercise, healthy diet, limiting alcohol, and not smoking) can improve multiple outcomes after a cancer diagnosis. Observational studies suggest that health behaviours were negatively impacted for some but not all individuals living with and beyond cancer. The aim of this study was to qualitatively explore the impact of the pandemic on health behaviours of people in this population. METHODS: Thirty participants were purposively sampled for characteristics including diagnostic group (breast, prostate, and colorectal cancers), gender, time since diagnosis, and age. Semi-structured interviews were conducted to discuss the impact of the pandemic on health behaviours. Thematic analysis and a secondary Ideal Types analysis were conducted. RESULTS: Five themes covered changes in food, weight management, relationship to alcohol, and exercise. Five "types" were identified, representing orientations to health behaviours. The "gift of time" provided by the pandemic had an impact on health behaviours, with trends towards increases in drinking, eating unhealthy food, and exercising less. CONCLUSIONS: The COVID-19 pandemic impacted engagement in positive health behaviours among participants in this study. Strict restrictions and changes in routines resulted in individuals adjusting how they managed their diet, alcohol intake, and exercise behaviours. The typology identified within this study helps to define how different orientation to health behaviours could underpin the responses of individual people LWBC. IMPLICATIONS FOR CANCER SURVIVORS: Alongside providing an understanding of the experiences of people LWBC during the COVID-19 pandemic, the proposed typology suggests how, with further development, future health behaviour interventions in this group could be targeted based on individual orientations to health, rather than demographic or clinical variables.

School lives of adolescent school students living with chronic physical health conditions: a qualitative evidence synthesis.

OBJECTIVE: Assess the existing evidence base in order to synthesise the current qualitative findings for the impact of chronic health conditions on the school lives of young people. DESIGN: Qualitative evidence synthesis using thematic synthesis. PATIENTS: Young people aged 11-18 years with a chronic health condition from one of the following groups: oncology, cystic fibrosis, diabetes, asthma, rheumatology, neuromuscular, colorectal, chronic pain, allergies and dermatology. OUTCOME MEASURE: Qualitative findings and discussions present in included studies formed the data for the thematic synthesis. RESULTS: From a search identifying 19 311 records, a sample of 35 papers were included. The included papers represented 15 countries and primarily employed interviews as part of data collection. Thematic synthesis resulted in six themes: 'keeping up/catching up/missing out/looking forward'; 'identity'; 'relationship with peers'; 'normality and difference'; 'autonomy'; 'relationships with staff'. CONCLUSIONS: Thematic synthesis highlighted the commonalities, rather than divergence, of issues for young people across different chronic conditions. Policies need to be based on the experiences of the people they aim to provide for, and while attendance and attainment remain important, there is clearly more that needs to be considered when gathering data, designing interventions and developing policies to support this population. It may also be advisable for clinical professionals to include the broader psychosocial aspects of school life in discussions and plans to support young people with long-term conditions. PROSPERO REGISTRATION NUMBER: CRD42021278153.

"Waiting for the best day of your life". A qualitative interview study of patients' and clinicians' experiences of Perthes' disease.

Aims: Perthes' disease is an idiopathic avascular necrosis of the developing femoral head, often causing deformity that impairs physical function. Current treatments aim to optimize the joint reaction force across the hip by enhancing congruency between the acetabulum and femoral head. Despite a century of research, there is no consensus regarding the optimal treatment. The aim of this study was to describe the experiences of children, their families, and clinicians when considering the treatment of Perthes' disease. Methods: A qualitative study gathered information from children and their families affected by Perthes' disease, along with treating clinicians. Interviews followed a coding framework, with the interview schedule informed by behavioural theory and patient and public involvement. Transcripts were analyzed using the framework method. Results: A total of 24 interviews took place, with 12 child/family dyads and 12 clinicians from UK NHS centres. Interviews identified widespread variation of routine care. Children/their families recounted positive experiences when included in the decision-making process for treatment. There is a strong desire from clinicians and children/families for consistent guidance from everyone involved in care, which should be based on clinical consensus. Conclusion: This is the first study to describe how children/families and clinicians experienced receiving or providing treatment in Perthes' disease. The results indicate the need for robust evidence to support treatment decisions. Children and families valued feeling involved in the clinical decision-making process. Clinicians acknowledged the central importance of providing patient-centred care, particularly in the absence of robust evidence to guide the optimal treatment decisions. This study will inform a future Delphi project to develop clinical consensus guidelines for the treatment of Perthes' disease.

Exploration of pain assessment and management processes in oncology outpatient services with healthcare professionals: a qualitative study.

OBJECTIVES: This study explored cancer pain management practices and clinical care pathways used by healthcare professionals (HCPs) to understand the barriers and facilitators for standardised pain management in oncology outpatient services (OS). DESIGN: Data were collected using semistructured interviews that were audio-recorded and transcribed. The data were analysed using thematic analysis. SETTING: Three NHS trusts with oncology OS in Northern England. PARTICIPANTS: Twenty HCPs with varied roles (eg, oncologist and nurse) and experiences (eg, registrar and consultant) from different cancer site clinics (eg, breast and lung). Data were analysed using thematic analysis. RESULTS: HCPs discussed cancer pain management practices during consultation and supporting continuity of care beyond consultation. Key findings included : (1) HCPs' level of clinical experience influenced pain assessments; (2) remote consulting impeded experienced HCPs to do detailed pain assessments; (3) diffusion of HCP responsibility to manage cancer pain; (4) nurses facilitated pain management support with patients and (5) continuity of care for pain management was constrained by the integration of multidisciplinary teams. CONCLUSIONS: These data demonstrate HCP cancer pain management practices varied and were unstructured. Recommendations are made for a standardised cancer pain management intervention: (1) detailed evaluation of pain with a tailored self-management strategy; (2) implementation of a structured pain assessment that supports remote consultations, (3) pain assessment tool that can support both experienced and less experienced clinicians. These findings will inform the development of a cancer pain management tool to integrate within routine oncology OS.

Online Symptom Monitoring During Pelvic Radiation Therapy: Randomized Pilot Trial of the eRAPID Intervention.

PURPOSE: Radiation therapy (RT) and chemoRT for pelvic cancers increase survival but are associated with serious treatment-related symptoms. Electronic-patient self-Reporting of Adverse-events: Patient Information and aDvice (eRAPID) is a secure online system for patients to self-report symptoms, generating immediate advice for hospital contact or self-management. This pilot study aimed to establish feasibility and acceptability of the system. METHODS AND MATERIALS: In a prospective 2-center randomized parallel-group pilot study, patients undergoing radical pelvic RT for prostate cancer (prostateRT) or chemoRT for lower gastrointestinal and gynecological cancers were randomized to usual care (UC) or eRAPID (weekly online symptom reporting for 12, 18, and 24 weeks). Primary outcomes were recruitment/attrition, study completion, and patient adherence. Secondary outcomes were effect on hospital services and performance of patient outcome measures. Missing data, floor/ceiling effects, and mean change scores were examined for Functional Assessment of Cancer Therapy (FACT-G), European Organisation for Research and Treatment of Cancer, Quality of Life (EORTC QLQ C-30), self-efficacy, and EuroQol (EQ5D). RESULTS: From 228 patients approached, 167 (73.2%) were consented and randomized (83, eRAPID; 84, UC; 87, prostateRT; 80, chemoRT); 150 of 167 completed 24 study weeks. Only 16 patients (9.6%) withdrew (10, eRAPID; 6, UC). In the eRAPID arm, completion rates were higher in patients treated with prostateRT compared with chemoRT (week 1, 93% vs 69%; week 2, 93% vs 68%; week 12, 69% vs 55%). Overall, over 50% of online reports triggered self-management advice for milder adverse events. Unscheduled hospital contact was low, with no difference between eRAPID and UC. Return rates for outcome measures were excellent in prostateRT (97%-91%; 6-24 weeks) but lower in chemoRT (95%-55%; 6-24 weeks). Missing data were low (1%-4.1%), ceiling effects were evident in EQ5D-5L, self-efficacy-scale, and FACT-Physical Wellbeing. At 6 weeks, the chemoRT-eRAPID group showed less deterioration in FACT-G, EORTC QLQ-C30, and EQ5D-Visual Analogue Scale than UC, after baseline adjustment. CONCLUSIONS: eRAPID was successfully added to UC at 2 cancer centers in different patient populations. Acceptability and feasibility were confirmed with excellent adherence by prostate patients, but lower by those undergoing chemoRT for gynecological cancers.

What effect does a cancer diagnosis have on the educational engagement and school life of teenagers? A systematic review.

OBJECTIVES: A diagnosis of cancer during the teenage years arrives at an important stage of development, where issues of normality, identity and independence are crucial. Education provides opportunity for peer contact, achievement and development for teenagers. This systematic review examined the impact of a diagnosis of cancer on the educational engagement and school life of teenagers. METHOD: Five electronic databases were searched, returning a total of 3209 articles. Inclusion criteria were broad to allow for the range of literature within this area. Following screening, 22 articles (inclusive of both quantitative and qualitative methodologies) were retained and subjected to independent review and quality assessment. RESULTS: Key areas involved in the impact of a cancer diagnosis on teenagers' educational engagement include school attendance, reintegration, peer relationships and long-term effects on education and employment. CONCLUSION: School absences are a concern for teenagers, but do not necessarily lead to a reduction in educational and vocational attainment. It is important to involve health care and education professionals, as well as parents and teenagers themselves, in school reintegration if it is to be successful. Peer groups and body image are two areas that could mediate education engagement for teenagers. Further research needs to be undertaken to determine the overall impact of successfully maintaining education engagement specifically for teenagers, the role that peer groups play in this process and how education engagement contributes to the overall coping and well-being of teenage cancer patients.