What recovery domains are important following a total knee replacement? A qualitative, interview-based study.

OBJECTIVES: To explore people's views of recovery from total knee replacement (TKR) and which recovery domains they felt were important. DESIGN: Semi-structured interviews exploring the views of individuals about to undergo or who have undergone TKR. A constant-comparative approach with thematic analysis was used to identify themes. The process of sampling, collecting data and analysis were continuous and iterative throughout the study, with interviews ceasing once thematic saturation was achieved. SETTING: Tertiary care centre. PARTICIPANTS: A purposive sample was used to account for variables including pre, early or late postoperative status. RESULTS: 12 participants were interviewed, 4 who were preoperative, 4 early postoperative and 4 late postoperative. Themes of pain, function, fear of complications, awareness of the artificial knee joint and return to work were identified. Subthemes of balancing acute and chronic pain were identified. CONCLUSIONS: The results of this interview-based study identify pain and function, in particular mobility, that were universally important to those undergoing TKR. Surgeons should consider exploring these domains when taking informed consent to enhance shared decision-making. Researchers should consider these recovery domains when designing interventional studies.

'It's just my knee': a qualitative study investigating the process of reframing and young athletes' perceived quality of life between anterior cruciate ligament injury and surgery.

OBJECTIVES: To understand the factors influencing young athletes' perceptions of quality of life (QOL) following an anterior cruciate ligament (ACL) rupture, prior to reconstructive surgery. DESIGN: Qualitative descriptive study using semi-structured interviews and thematic analysis of data. SETTING: Tertiary sports medicine clinic with patients recruited from the practices of three specialist orthopaedic surgeons. PARTICIPANTS: Twenty athletes aged 14-25 provided consent to participate in the study and completed interviews prior to their ACL reconstruction surgery. Participants were eligible to participate if they were scheduled to undergo ACL reconstruction, were 25 years of age or younger, identified as athletes (participated in any level of organised sport), could communicate in English and agreed to be audio recorded. Participants were not eligible if they had experienced a multiligament injury or fracture. RESULTS: Young athletes shared common factors that made up their QOL; social connections and support, sport, health, and independence. However, participants' perceptions of their current QOL were quite variable (13-95/100 on a Visual Analogue Scale). Participants who were able to reframe their injury experience by shifting focus to the positive or unaffected aspects of their lives tended to have more favourable perceptions of their QOL than participants who shifted focus to the losses associated with injury. CONCLUSIONS: Young athletes who have experienced an ACL injury define their QOL based on social support, sport, health and independence. Individual processes of adaptation and cognitive reframing in response to an ACL injury may exert a greater influence on postinjury QOL than the physical ramifications of the injury itself. Understanding individual perceptions may help target potential interventions or supports to enhance athletes' adaptation to injury.

Influence of external assessment on quality and safety in surgery: a qualitative study of surgeons' perspectives.

INTRODUCTION: Transparency about the occurrence of adverse events has been a decades-long governmental priority, defining external feedback to healthcare providers as a key measure to improve the services and reduce the number of adverse events. This study aimed to explore surgeons' experiences of assessment by external bodies, with a focus on its impact on transparency, reporting and learning from serious adverse events. External bodies were defined as external inspection, police internal investigation, systems of patient injury compensation and media. METHODS: Based on a qualitative study design, 15 surgeons were recruited from four Norwegian university hospitals and examined with individual semi-structured interviews. Data were analysed by deductive content analysis. RESULTS: Four overarching themes were identified, related to influence of external inspection, police investigation, patient injury compensation and media publicity, (re)presented by three categories: (1) sense of criminalisation and reinforcement of guilt, being treated as suspects, (2) lack of knowledge and competence among external bodies causing and reinforcing a sense of clashing cultures between the 'medical and the outside world' with minor influence on quality improvement and (3) involving external bodies could stimulate awareness about internal issues of quality and safety, depending on relevant competence, knowledge and communication skills. CONCLUSIONS AND IMPLICATIONS: This study found that external assessment might generate criminalisation and scapegoating, reinforcing the sense of having medical perspectives on one hand and external regulatory perspectives on the other, which might hinder efforts to improve quality and safety. External bodies could, however, inspire useful adjustment of internal routines and procedures. The study implies that the variety and interconnections between external bodies may expose the surgeons to challenging pressure. Further studies are required to investigate these challenges to quality and safety in surgery.

Lessons learned from COVID-19: improving breast cancer care post-pandemic from the patient perspective.

BACKGROUND: Since the onset of the pandemic, breast cancer (BC) services have been disrupted in most countries. The purpose of this qualitative study is to explore the unmet needs, patient-priorities, and recommendations for improving BC healthcare post-pandemic for women with BC and to understand how they may vary based on social determinants of health (SDH), in particular socio-economic status (SES). METHODS: Thirty-seven women, who were purposively sampled based on SDH and previously interviewed about the impact of COVID-19 on BC, were invited to take part in follow-up semi-structured qualitative interviews in early 2023. The interviews explored their perspectives of BC care since the easing of COVID-19 government restrictions, including unmet needs, patient-priorities, and recommendations specific to BC care. Thematic analysis was conducted to synthesize each topic narratively with corresponding sub-themes. Additionally, variation by SDH was analyzed within each sub-theme. RESULTS: Twenty-eight women (mean age = 61.7 years, standard deviation (SD) = 12.3) participated in interviews (response rate = 76%). Thirty-nine percent (n = 11) of women were categorized as high-SES, while 61% (n = 17) of women were categorized as low-SES. Women expressed unmet needs in their BC care including routine care and mental and physical well-being care, as well as a lack of financial support to access BC care. Patient priorities included the following: developing cohesion between different aspects of BC care; communication with and between healthcare professionals; and patient empowerment within BC care. Recommendations moving forward post-pandemic included improving the transition from active to post-treatment, enhancing support resources, and implementing telemedicine where appropriate. Overall, women of low-SES experienced more severe unmet needs, which in turn resulted in varied patient priorities and recommendations. CONCLUSION: As health systems are recovering from the COVID-19 pandemic, the emphasis should be on restoring access to BC care and improving the quality of BC care, with a particular consideration given to those women from low-SES, to reduce health inequalities post-pandemic.

Benefits, challenges, and strategies related to using presumptive recommendations for HPV vaccination: A qualitative study with rural and non-rural-serving primary care professionals.

HPV vaccination coverage remains far below the national target of 80% among US adolescents, particularly in rural areas, which have vaccine uptake rates that are 10% points lower than non-rural areas on average. Primary care professionals (PCPs) can increase coverage by using presumptive recommendations to introduce HPV vaccination in a way that assumes parents want to vaccinate. Through semi-structured interviews, we explored PCPs' experiences and perceptions of using presumptive recommendations in rural- and non-rural-serving primary care clinics in North Carolina. Thematic analysis revealed that most PCPs in rural and non-rural contexts used presumptive recommendations and felt the strategy was an effective and concise way to introduce the topic of HPV vaccination to parents. At the same time, some PCPs raised concerns about presumptive recommendations potentially straining relationships with certain parents, including those who had previously declined HPV vaccine or who distrust medical authority due to their past experiences with the healthcare system. PCPs dealt with these challenges by using a more open-ended approach when introducing HPV vaccination to parents. In conclusion, our findings suggest that PCPs in both rural and non-rural settings see value in using presumptive recommendations to introduce HPV vaccination, but to adequately address concerns and ensure increased HPV vaccine uptake, PCPs can use simple and culturally sensitive language to ensure fully informed consent and to maintain parental trust. And to further strengthen HPV vaccine discussions, PCPs can utilize other effective HPV communication techniques, like the Announcement Approach, in discussing HPV vaccinations with hesitant parents.

"Too young to have this kind of diagnosis": A qualitative exploration of younger adults' experiences of colorectal cancer diagnosis.

OBJECTIVE: Colorectal cancer (CRC) incidence is rising among adults under the age of 50 (early- or young-onset CRC). This population is more likely to have advanced-stage disease at diagnosis, suggesting their diagnostic pathway may be prolonged. To better understand factors influencing this pathway, this study explored patients' experiences of decision-making during a diagnosis of young-onset CRC. METHODS: Semi-structured interviews were conducted with 17 participants with young-onset CRC diagnosed in 2021-2022 in Victoria, Australia. Interviews were conducted online or by phone an average 7 months (range 1-13) after diagnosis. Analysis was approached from a critical realist perspective, with themes developed inductively using reflexive thematic analysis. RESULTS: Five themes were identified: Shifting Perception of Urgency, Multidimensional Perception of Role, Making the Most of Resources, Stage of Life, and COVID Adds Complexity. Participants' decision-making evolved over the diagnostic period. As participants perceived urgency to act, they took on a more active role in decision-making, utilising personal resources to access timely care. Their decisions were shaped by stage-of-life considerations, including employment and caring for a young family, with the COVID-19 pandemic adding "…a whole other layer of complexity" to the process. CONCLUSIONS: Younger adults with CRC make decisions in the context of unique considerations, adapting to reduce time to diagnosis, with decisions complicated by the COVID-19 pandemic. Greater support from health care providers/systems in the diagnostic period may improve timeliness of CRC diagnosis and outcomes in younger adults.

Insights into Chinese Canadian culture: enablers and barriers for fruit and vegetable intake.

Background: Fruits and vegetables (F&V) play a vital role in promoting health and preventing diseases. Numerous studies have demonstrated the association between F&V consumption and reduced risks of cardiovascular disease, cancer, and mortality. Despite the high priority of public health in promoting F&V intake, Chinese immigrants in Canada often fall below national guidelines in their consumption. Understanding the factors influencing F&V intake in this community is crucial for developing effective interventions. Methods: This study used an applied ethnographic research approach to gain insight into the enablers and barriers that influence F&V intake among Chinese-Canadian adults in Richmond, BC. Semi-structured interviews and 'photovoice' group sessions were conducted to gather qualitative data from community participants and health care providers (HCPs). Results: The research identified four key themes: (1) Cultural differences around how vegetables are perceived, consumed and prepared; (2) Motivators and strategies for increasing vegetable and fruit intake; (3) Lack of culturally relevant dietary education and resources; and (4) Importance of value in vegetable/fruit-related decisions. Participants showed a strong preference for the traditional Eastern diet, with cost of food and lack of knowledge about Western vegetables acting as barriers to dietary diversity. The study also highlighted the need for culturally tailored educational resources to effectively promote F&V consumption. Conclusion: By adopting a multi-modal approach, incorporating both interviews and 'photovoice' sessions, this research provided comprehensive insights into the participants' perspectives and experiences related to F&V intake. Understanding these factors can guide the development of culturally appropriate interventions to increase F&V consumption among Chinese-Canadian adults in Richmond, BC, and potentially improve their overall health and well-being. Future studies should consider the heterogeneity within the Chinese immigrant population and target a more balanced representation of age groups to further enhance our understanding of F&V intake patterns in this community.

Oncology patients' willingness to report their medication safety concerns from home: a qualitative study.

PURPOSE: Oncology patients often struggle to manage their medications and related adverse events during transitions of care. They are expected to take an active role in self-monitoring and timely reporting of their medication safety events or concerns to clinicians. The purpose of this study was to explore the factors influencing oncology patients' willingness to report adverse events or concerns related to their medication after their transitions back home. METHODS: A qualitative interview study was conducted with adult patients with breast, prostate, lung, or colorectal cancer who experienced care transitions within the previous year. A semi-structured interview guide was developed to understand patients' perceptions of reporting mediation-related safety events or concerns from home. All interviews were conducted via phone calls, recorded, and transcribed for thematic data analysis. RESULTS: A total of 41 individuals participated in the interviews. Three main themes and six subthemes emerged, including patients' perceived relationship with clinicians (the quality of communication and trust in clinicians), perceived severity of adverse medication events (perceived severe vs. non-severe events), and patient activation in self-management (self-efficacy in self-management and engagement in monitoring health outcomes). CONCLUSION: The patient-clinician relationship significantly affects patients' reporting behaviors, which can potentially interact with other factors, including the severity of adverse events. It is important to engage oncology patients in medication safety self-reporting from home by enhancing health communication, understanding patients' perceptions of severe events, and promoting patient activation. By addressing these efforts, healthcare providers should adopt a more patient-centered approach to enhance the overall quality and safety of oncological care.

Patients' experiences of and roles in interprofessional collaborative practice in primary care: a constructivist grounded theory study.

AIM: This constructivist grounded theory study aimed to (1) explore patients' experiences of and roles in interprofessional collaborative practice for chronic conditions in primary care and (2) consider the relevance and alignment of an existing theoretical framework on patients' roles and based on the experiences of patient advocates. BACKGROUND: High-quality management of chronic conditions requires an interprofessional collaborative practice model of care considering an individual's mental, physical, and social health situation. Patients' experiences of this model in the primary care setting are relatively unknown. METHODS: A constructivist grounded theory approach was taken. Interview data were collected from primary care patients with chronic conditions across Australia in August 2020 - February 2022. Interviews were recorded, transcribed verbatim, and thematically analysed by (1) initial line-by-line coding, (2) focused coding, (3) memo writing, (4) categorisation, and (5) theme and sub-theme development. Themes and sub-themes were mapped against an existing theoretical framework to expand and confirm the results from a previous study with a similar research aim. FINDINGS: Twenty adults with chronic conditions spanning physical disability, diabetes, heart disease, cancer, autoimmune, and mental health conditions participated. Two themes were developed: (1) Adapting to Change with two sub-themes describing how patients adapt to interprofessional team care and (2) Shifting across the spectrum of roles, with five sub-themes outlining the roles patients enact while receiving care. The findings suggest that patients' roles are highly variable and fluid in interprofessional collaborative practice, and further work is recommended to develop a resource to support greater patient engagement in interprofessional collaborative practice.

Knowledge, Skills, and Experience With Technology in Relation to Nutritional Intake and Physical Activity Among Older Adults at Risk of Falls: Semistructured Interview Study.

BACKGROUND: More than one-third of older adults (aged ≥65 y) experience falls every year. The prevalent modifiable risk factors for falling are malnutrition and physical inactivity, among others. The involvement of older adults in the prevention of falls can decrease injuries, hospitalizations, and dependency on health care professionals. In this regard, eHealth can support older adults' self-management through more physical activity and adequate food intake. eHealth must be tailored to older adults' needs and preferences so that they can reap its full benefits. Therefore, it is necessary to gain insight into the knowledge, skills, and mindset of older adults living at home who are at risk of falls regarding eHealth. OBJECTIVE: This qualitative study aims to explore older adults' use of everyday digital services and technology and how they acquire knowledge about and manage their nutritional intake and physical activity in relation to their health. METHODS: Semistructured interviews were conducted with 15 older adults (n=9, 60% women; n=6, 40% men; age range 71-87 y) who had all experienced falls or were at risk of falling. These individuals were recruited from a geriatric outpatient clinic. The interviews were analyzed using deductive content analysis based on a modification of the Readiness and Enablement Index for Health Technology framework. RESULTS: The qualitative data showed that the informants' social networks had a positive impact on their self-management, use of technology, and mindset toward nutritional intake and physical activity. Although the informants generally lived active lives, they all lacked knowledge about how their food intake influenced their physical health, including their risk of falling. Another finding was the large diversity in the use of technology among the informants, which was related to their mindset toward technology. CONCLUSIONS: Older adults can use technology for everyday purposes, but some need additional introduction and support to be able to use it for managing their health. They also need to learn about the importance of proper nutritional intake and physical activity in preventing falls. Older adults need a more personalized introduction to technology, nutrition, and physical activity in their contact with health professionals.

Life disturbance and hospital visit experiences among Chinese patients with benign prostatic hyperplasia: a qualitative study.

BACKGROUND: The impact of lower urinary tract symptoms (LUTS) on the quality of life of patients with benign prostatic hyperplasia (BPH) has been rarely reported. Additionally, the challenges faced by these patients in seeking medical care have often been overlooked. In order to explore the personal struggles caused by LUTS and the difficulties or barriers experienced by Chinese patients with BPH when seeking help, we conducted a qualitative interview study. METHODS: Qualitative interviews were conducted among 46 patients with BPH who were hospitalized in three tertiary hospitals in China from July 2021 to November 2022. Grounded theory was adopted as the methodology for the qualitative study. After obtaining written informed consent from the study participants, semi-structured interviews were conducted according to the question guidelines. The interview process was audio-recorded; subsequently, the recordings were transcribed, coded, and thematically analyzed. RESULTS: The difficulties faced by Chinese patients with BPH were classified into seven main themes: (i) disturbed life, (ii) mental burden, (iii) disease cognition and communication, (iv) delayed treatment, (v) medication status, (vi) hospital visits barriers, and (vii) medical insurance issues. Further, each theme was subdivided into 2-5 sub-themes. CONCLUSIONS: LUTS have a certain effect on the life and spirit of patients with BPH. These patients face different degrees of difficulties in treatment and hospital visits. Therefore, better healthcare systems and additional social support are crucial for improving the current plight of these patients.

Acceptability and feasibility of screening with a pediatric care provider-led social determinants of health identification tool.

BACKGROUND: Complex social determinants of health may not be easily recognized by health care providers and pose a unique challenge in the vulnerable pediatric population where patients may not be able to advocate for themselves. The goal of this study was to examine the acceptability and feasibility of health care providers using an integrated brief pediatric screening tool in primary care and hospital settings. METHODS: The framework of the Child and Adolescent Needs and Strengths (CANS) and Pediatric Intermed tools was used to inform the selection of items for the 9-item Child and Adolescent Needs and Strengths-Pediatric Complexity Indicator (CANS-PCI). The tool consisted of three domains: biological, psychological, and social. Semi-structured interviews were conducted with health care providers in pediatric medical facilities in Ottawa, Canada. A low inference and iterative thematic synthesis approach was used to analyze the qualitative interview data specific to acceptability and feasibility. RESULTS: Thirteen health care providers participated in interviews. Six overarching themes were identified: acceptability, logistics, feasibility, pros/cons, risk, and privacy. Overall, participants agreed that a routine, trained provider-led pediatric tool for the screening of social determinants of health is important (n = 10, 76.9%), acceptable (n = 11; 84.6%), and feasible (n = 7, 53.8%). INTERPRETATION: Though the importance of social determinants of health are widely recognized, there are limited systematic methods of assessing, describing, and communicating amongst health care providers about the biomedical and psychosocial complexities of pediatric patients. Based on this study's findings, implementation of a brief provider-led screening tool into pediatric care practices may contribute to this gap.

Personal and organisational health literacy in the non-specific symptom pathway for cancer: An ethnographic study.

INTRODUCTION: People being investigated for cancer face a wealth of complex information. Non-specific symptom pathways (NSS) were implemented in the United Kingdom in 2017 to address the needs of patients experiencing symptoms such as weight loss, fatigue or general practitioner 'gut feeling', who did not have streamlined pathways for cancer investigation. This study aimed to explore the health literacy skills needed by patients being investigated for cancer in NSS pathways. METHODS: This study employed ethnographic methods across four hospitals in England, including interviews, patient shadowing and clinical care observations, to examine NSS pathways for cancer diagnosis. We recruited 27 patients who were shadowed and interviewed during their care. We also interviewed 27 professionals. The analysis focused on patient communication and understanding, drawing on the concepts of personal and organisational health literacy. RESULTS: Our analysis derived six themes highlighting the considerable informational demands of the NSS pathway. Patients were required to understand complex blood tests and investigations in primary care and often did not understand why they were referred. The NSS pathway itself was difficult to understand with only a minority of patients appreciating that multiple organs were being investigated for cancer. The process of progressing through the pathway was also difficult to understand, particularly around who was making decisions and what would happen next. The results of investigations were complex, often including incidental findings. Patients whose persistent symptoms were not explained were often unsure of what to do following discharge. CONCLUSION: We have identified several potential missed opportunities for organisations to support patient understanding of NSS pathways which could lead to inappropriate help-seeking post-discharge. Patients' difficulties in comprehending previous investigations and findings could result in delays, overtesting or inadequately targeted investigations, hindering the effective use of their medical history. Third, patients' limited understanding of their investigations and results may impede their ability to engage in patient safety by reporting potential care errors. PATIENT OR PUBLIC CONTRIBUTION: Patient, public, clinical and policy representatives contributed to developing the research objectives through a series of meetings and individual conversations in preparation for the study. We have held several events in which patients and the public have had an opportunity to give feedback about our results, such as local interest groups in North London and academic conferences. A clinical contributor (J.-A. M.) was involved in data analysis and writing the manuscript.

Experiences of youth growing up with anorectal malformation or Hirschsprung's disease: a multicenter qualitative in-depth interview study.

PURPOSE: Patients with anorectal malformation (ARM) and Hirschsprung's disease (HD) live with long-term impact of these diseases even into adulthood. We aimed to explore the physical, social and emotional impact of these diseases in adolescents and young adults to develop best practices for transition care. METHODS: We conducted one-on-one in-depth interviews with ARM and HD patients aged ≥ 11 years who had undergone surgery at four tertiary referral centers. All interviews were audio-recorded and transcribed verbatim. We analyzed transcripts for recurring themes, and data were collected until data saturation was reached. Three researchers independently coded the transcripts for major themes using thematic analysis approach. RESULTS: We interviewed 16 participants (11 males) between October 2022 and April 2023. Ages ranged from 11 to 26 years. Five major themes emerged: (1) personal impact (subthemes: physical, emotional and mental health, social, school), (2) impact on family, (3) perceptions of their future (subthemes: relationships, career, state of health), (4) sources of support (subthemes: family, peers, partner), and (5) transition care (subthemes: concerns, expectations). Only females expressed concerns regarding future fertility. CONCLUSION: This study highlights the evolving problems faced by adolescents and young adults with ARM and HD, especially gender-specific concerns. Our findings can inform efforts to provide individualized care.

The feasibility, acceptability and appropriateness of screening for frailty in Australians aged 75 years and over attending Australian general practice.

Background Globally, frailty is associated with a high prevalence of avoidable hospital admissions and emergency department visits, with substantial associated healthcare and personal costs. International guidelines recommend incorporation of frailty identification and care planning into routine primary care workflow to support patients who may be identified as pre-frail/frail. Our study aimed to: (1) determine the feasibility, acceptability, appropriateness and determinants of implementing a validated FRAIL Scale screening Tool into general practices in two disparate Australian regions (Sydney North and Brisbane South); and (2) map the resources and referral options required to support frailty management and potential reversal. Methods Using the FRAIL Scale Tool, practices screened eligible patients (aged ≥75years) for risk of frailty and referred to associated management options. The percentage of patients identified as frail/pre-frail, and management options and referrals made by practice staff for those identified as frail/pre-frail were recorded. Semi-structured qualitative interviews were conducted with practice staff to understand the feasibility, acceptability, appropriateness and determinants of implementing the Tool. Results The Tool was implemented by 19 general practices in two Primary Health Networks and 1071 consenting patients were assessed. Overall, 80% of patients (n =860) met the criterion for frailty: 33% of patients (n =352) were frail, and 47% were pre-frail (n =508). They were predominantly then referred for exercise prescription, medication reviews and geriatric assessment. The Tool was acceptable to staff and patients and compatible with practice workflows. Conclusions This study demonstrates that frailty is identified frequently in Australians aged ≥75years who visit their general practice. It's identification, linked with management support to reverse or reduce frailty risk, can be readily incorporated into the Medicare-funded annual 75+ Health Assessment.

Understanding supported self-management for people living with a lower-grade glioma: Implementation considerations through the lens of normalisation process theory.

BACKGROUND: Supported self-management can improve clinical and psychosocial outcomes in people with cancer; the considerations required to implement self-management support (SMS) for people living with a lower-grade glioma (LGG)-who often have complex support needs-are not known. We aimed to identify and understand these implementation considerations through the lens of normalisation process theory (NPT), from the perspectives of healthcare professionals (HCP) and people with LGG. METHODS: We conducted semistructured interviews with HCPs who support adults with brain tumours (n = 25; 12 different healthcare professions), and people with LGG who had completed primary treatment (n = 28; male n = 16, mean age 54.6 years, mean time since diagnosis 8.7 years), from across the United Kingdom. Interviews were transcribed and inductive open coding conducted, before deductively mapping to constructs of NPT. We first mapped HCP data, then integrated data from people with LGG to explore alignment in experiences and perspectives. RESULTS: We generated supporting evidence for all four NPT constructs and related subconstructs, namely: 'Coherence', 'Cognitive participation', 'Collective action' and 'Reflexive monitoring'. Data from HCPs and people with LGG clearly demonstrated that effective SMS constitutes a collective activity. Key implementation considerations included: ensuring awareness of, and access to, support; building strong HCP-support recipient relationships; and careful inclusion of close family and friends. We identified pertinent challenges, such as identifying support needs (influenced by the extent to which those with LGG engage in help-seeking), resistance to support (e.g., technology literacy), training for HCPs and HCP cooperation. CONCLUSIONS: This study demonstrates the collective nature of, and provides insight into the individual roles within, supported self-management. We outline considerations to operationalise, sustain and appraise the implementation of SMS for people with LGG. PATIENT OR PUBLIC CONTRIBUTION: People with brain tumours, and informal caregivers, were involved in the development of information materials and topic guides to ensure accessibility and pertinence. They also had opportunities to comment on interview findings.

Parent and oncologist perspectives on prognostic disclosure in advanced childhood cancer: communication pearls and pitfalls.

PURPOSE: For children with advanced cancer and their families, communication about prognosis is critical. Unfortunately, data demonstrate that prognostic communication occurs infrequently and inconsistently across advancing illness. Prior to developing an intervention to improve prognostic communication, we aimed to (1) characterize parent and oncologist perspectives on "best" approaches for prognostic communication, and (2) explore similarities and differences between parent and oncologist perspectives. METHODS: Children with poor-prognosis solid tumors, their parents, and oncologists were followed prospectively for 24 months or until death. Matched semi-structured interviews were conducted with parents and oncologists 0-7 days after medical encounters at timepoints of disease progression or relapse. Reflexive thematic analysis was conducted to describe parent and oncologist impressions of communication quality. RESULTS: A total of 68 interviews were conducted following serial disease reevaluation encounters involving 13 parents and five oncologists. Nine main themes were identified as "best" approaches: (1) speaking with honesty and clarity, (2) leaving room for hope, (3) leaning into a long-standing relationship, (4) personalizing language, (5) empowering the patient and family, (6) collaborating with the multidisciplinary team, (7) providing anticipatory guidance, (8) setting the scene, and (9) creating a therapeutic space. Parents and oncologists generally agreed on themes related to helpful communication approaches, while parents more explicitly described communication pitfalls. CONCLUSION: Parents and oncologists described clear recommendations for helpful communication strategies and pitfalls to avoid during difficult prognostic disclosure. Future work should integrate patient perspectives in the design and testing of an intervention to improve prognostic communication in advanced childhood cancer.

Professionals' perspectives on caring for cancer patients with pre-existing severe mental disorders.

INTRODUCTION: Cancer trajectories among patients with pre-existing severe mental disorders (SMD) are challenging and these pateints' prognosis is poor. This study aimed at exploring barriers in cancer trajectories among patients with pre-existing SMD as experienced by Danish healthcare professionals. METHODS: Semi-structured interviews were conducted with healthcare professionals who were sampled by purposive sampling. Data were analysed using inductive qualitative content analysis. RESULTS: The participants wanted to optimise treatment, but several barriers were reported, including lack of knowledge of supportive social systems. Oncological participants experienced a lack of knowledge of psychiatric disorders and a reluctance to deal with patients with SMD among some colleagues. Furthermore, participants expressed a lack of time and continuity. CONCLUSIONS: Concerns about how to create optimal cancer care trajectories for people with pre-existing SMD exist among healthcare professionals. Even so, stigmatisation, lack of knowledge and system barriers such as a lack of time and continuity must be addressed to optimise care for this population. FUNDING: This study was funded by The Danish Cancer Society (R283-A16499). TRIAL REGISTRATION: This study is registered in the internal register of research projects of the Central Denmark Region (R. no. 1-16-02-227-21).

"It gave me a sense of achievement and a sense of purpose"-a qualitative study of patient experiences of a virtually supervised exercise program for adults with advanced cancer and cachexia.

People with advanced cancer and cachexia experience significant body weight loss, adversely impacting physical function and quality of life (QOL). Effective, evidence-based treatments for cancer cachexia are lacking, leaving patients with unmet needs. Exercise holds promise to improve patient QOL. However, information on patients' experiences of exercise, including their ability to cope with structured exercise, is limited. PURPOSE: To explore patient experiences completing a structured, supervised exercise program for people with cachexia due to advanced cancer. METHODS: Semi-structured interviews were conducted with participants enrolled in a phase II feasibility, randomized controlled trial to explore their experiences of an 8-week virtually supervised exercise program delivered via videoconference technology. Interviews were analysed using reflexive thematic analysis. RESULTS: Seventeen participants completed interviews (female n = 9, 53%). Main interview themes included the following: (1) Deciding to exercise involves balancing concerns and expectations, (2) the exercise program is a positive experience, and (3) moving forward after the exercise program. While some participants initially held doubts about their physical capabilities and exercise safety, most wanted to exercise to enhance their wellbeing. Participants described the exercise program as a positive experience, offering diverse benefits. Some would have preferred in-person exercise, but all agreed the virtual format increased convenience. Participants emphasized the need to recommend the program to others in similar circumstances. They underscored the necessity and desire for ongoing support to sustain their new exercise habits. CONCLUSION: Based on patient experiences, virtually supervised exercise programming appears to be feasible and meaningful to people with advanced cancer and cachexia.

Development of a patient decision aid for children and adolescents following anterior cruciate ligament rupture: an international mixed-methods study.

AIM: To develop and user test an evidence-based patient decision aid for children and adolescents who are considering anterior cruciate ligament (ACL) reconstruction. DESIGN: Mixed-methods study describing the development of a patient decision aid. SETTING: A draft decision aid was developed by a multidisciplinary steering group (including various types of health professionals and researchers, and consumers) informed by the best available evidence and existing patient decision aids. PARTICIPANTS: People who ruptured their ACL when they were under 18 years old (ie, adolescents), their parents, and health professionals who manage these patients. Participants were recruited through social media and the network outreach of the steering group. PRIMARY AND SECONDARY OUTCOMES: Semistructured interviews and questionnaires were used to gather feedback on the decision aid. The feedback was used to refine the decision aid and assess acceptability. An iterative cycle of interviews, refining the aid according to feedback and further interviews, was used. Interviews were analysed using reflexive thematic analysis. RESULTS: We conducted 32 interviews; 16 health professionals (12 physiotherapists, 4 orthopaedic surgeons) and 16 people who ruptured their ACL when they were under 18 years old (7 were adolescents and 9 were adults at the time of the interview). Parents participated in 8 interviews. Most health professionals, patients and parents rated the aid's acceptability as good-to-excellent. Health professionals and patients agreed on most aspects of the decision aid, but some health professionals had differing views on non-surgical management, risk of harms, treatment protocols and evidence on benefits and harms. CONCLUSION: Our patient decision aid is an acceptable tool to help children and adolescents choose an appropriate management option following ACL rupture with their parents and health professionals. A clinical trial evaluating the potential benefit of this tool for children and adolescents considering ACL reconstruction is warranted.