A Preliminary Phenomenological Exploration of Experiences of the Empty Pelvis Syndrome Derived From a Modified-Delphi: The Price of Survival Following Pelvic Exenteration for Advanced Pelvic Cancer.

Objective: The empty pelvis syndrome (EPS) is common after pelvic exenteration (PE), causing fluid collections, bowel obstruction, perineal sinuses, and fistulas. The best approach to fill the pelvis to mitigate this remains controversial, and the impact of EPS on health-related quality of life (HrQoL) is unknown. This study is the first to begin to explore lived-experiences of EPS complications.

Exploring the Lived Experiences of Young Women With Congenital Heart Disease Through Adolescence: A Qualitative Feminist Study Using Focus Groups.

Objectives: The overarching aim of this study is to explore, examine and identify the experience that young women with congenital heart disease face as they transition through adolescence into womanhood.

Design: This is an empirical qualitative study conducted in the form of three focus groups. The study design and analysis adopted a feminist ontological positioning to elucidate the voice of women and offer an alternative perspective of cardiology health care.

Understanding the impact of distance and disadvantage on lung cancer care and outcomes: a study protocol.

Background: Lung cancer is the third most common cancer in the UK and the leading cause of cancer mortality globally. NHS England guidance for optimum lung cancer care recommends management and treatment by a specialist team, with experts concentrated in one place, providing access to specialised diagnostic and treatment facilities. However, the complex and rapidly evolving diagnostic and treatment pathways for lung cancer, together with workforce limitations, make achieving this challenging.

Lung cancer in never smokers (LCINS): development of a UK national research strategy.

Introduction: Lung cancer in never smokers (LCINS) accounts for 15% of lung cancers diagnosed in the UK, making it the 8th most common cancer. There are few robust studies specific to the LCINS population making data surrounding the incidence and mortality of LCINS incomplete, leaving many gaps in our understanding of the needs of this population.

Methods: To address a lack of research in this important area, the UK National Cancer Research Institute Lung Study Group (NCRI-LSG) undertook a national survey and hosted a research strategy day to define key research priorities.

The role of social networks in the self-management support for young women recently diagnosed with breast cancer.

It is widely acknowledged that social network support plays an important role in the quality of life and illness management of breast cancer survivors. However, the factors and processes that enable and sustain such support are less well understood. This paper reports baseline findings from a prospective UK national cohort of 1,202 women with breast cancer (aged <50 years at diagnosis), recruited before starting treatment, conducted in 2016-2019.

Quality of life and health status in older adults (≥65 years) up to five years following colorectal cancer treatment: Findings from the ColoREctal Wellbeing (CREW) cohort study.

Objective: Colorectal cancer (CRC) is common in older adults, with more than 70% of diagnoses in people aged ≥65 years. Despite this, there is a knowledge gap regarding longer-term outcomes in this population. Here, we identify those older people most at risk of poor quality of life (QoL) and health status in the five years following CRC treatment.

Same storm, different boat: The global impact of COVID-19 on palliative care.

Objective: The COVID-19 pandemic has had a complex and profound impact on the provision of palliative care globally. To support learning from palliative care providers and researchers worldwide, the Education Subcommittee of International Psycho-Oncology Society (IPOS) Palliative Care Special Interest Group developed a webinar with presentations by and discussion with eight international palliative care leaders.

Methods: Presentations were content rich; the speakers used both quantitative (e.

Modifiable pre-treatment factors are associated with quality of life in women with gynaecological cancers at diagnosis and one year later: Results from the HORIZONS UK national cohort study.

Objective: Personalised care requires the identification of modifiable risk factors so that interventions can be implemented rapidly following a gynaecological cancer diagnosis. Our objective was to determine what pre-treatment factors are associated with quality of life (QOL) at baseline (pre-treatment) and 12 months.

Methods: 1222 women with a confirmed diagnosis of endometrial, ovarian, cervical or vulvar cancer from 82 UK NHS hospitals agreed to complete questionnaires at baseline, three and 12 months.

Self-management by older people living with cancer and multi-morbidity: a qualitative study.

Purpose: Over half of individuals diagnosed with cancer are aged over 70 years, and more than 75% of those with cancer report at least one other medical condition. Having multiple conditions alongside cancer in old age may lower functional status, greater likelihood of treatment complications and less favourable prognoses. This qualitative study explored how older people with long-term chronic conditions manage their health and meet their health-related goals after they have completed treatment for cancer.

Prevalence and determinants of depression up to 5 years after colorectal cancer surgery: results from the ColoREctal Wellbeing (CREW) study.

Aim: Depression experienced by people with colorectal cancer (CRC) is an important clinical problem affecting quality of life. Recognition of depression at key points in the pathway enables timely referral to support. This study aimed to examine depression before and 5 years after surgery to examine its prevalence and identify determinants.

: A qualitative study of living with treatable but not curable cancer during the COVID-19 pandemic.

Background: People living with cancer that is treatable but not curable have complex needs, often managing health at home, supported by those close to them. Challenges are likely to be exacerbated during the COVID-19 pandemic and the risk-reducing measures introduced in response. The impact of COVID-19 on those living with incurable, life-threatening conditions is little understood.

International perspectives on suboptimal patient-reported outcome trial design and reporting in cancer clinical trials: A qualitative study.

Purpose: Evidence suggests that the patient-reported outcome (PRO) content of cancer trial protocols is frequently inadequate and non-reporting of PRO findings is widespread. This qualitative study examined the factors influencing suboptimal PRO protocol content, implementation, and reporting, and use of PRO data during clinical interactions.

Methods: Semi-structured interviews were conducted with four stakeholder groups: (1) trialists and chief investigators; (2) people with lived experience of cancer; (3) international experts in PRO cancer trial design; (4) journal editors, funding panelists, and regulatory agencies.

Systematic review of the use of translated patient-reported outcome measures in cancer trials.

Background: Patient-reported outcomes (PROs) are used in clinical trials to assess the effectiveness and tolerability of interventions. Inclusion of participants from different ethnic backgrounds is essential for generalisability of cancer trial results. PRO data collection should include appropriately translated patient-reported outcome measures (PROMs) to minimise missing data and sample attrition.

The Frequency and Content of Discussions About Alcohol Use in Primary Care and Application of the Chief Medical Officer's Low-Risk Drinking Guidelines: A Cross-Sectional Survey of General Practitioners and Practice Nurses in the UK.

Aims: To examine how often general practitioners (GPs) and practice nurses (PNs) working in primary care discuss alcohol with patients, what factors prompt discussions, how they approach patient discussions and whether the Chief Medical Officers' (CMO) revised low-risk drinking guidelines are appropriately advised.

Methods: Cross-sectional survey with GPs and PNs working in primary care in the UK, conducted January-March 2017 (n = 2020). A vignette exercise examined what factors would prompt a discussion about alcohol, whether they would discuss before or after a patient reported exceeded the revised CMO guidelines (14 units per week) and whether the CMO drinking guidelines were appropriately advised.

Peer support to maintain psychological wellbeing in people with advanced cancer: findings from a feasibility study for a randomised controlled trial.

Background: Advanced cancer affects people's lives, often causing stress, anxiety and depression. Peer mentor interventions are used to address psychosocial concerns, but their outcomes and effect are not known. Our objective was to determine the feasibility of delivering and investigating a novel peer mentor intervention to promote and maintain psychological wellbeing in people with advanced cancer.

Self-management in older people living with cancer and multi-morbidity: A systematic review and synthesis of qualitative studies.

Objective: Many older people with cancer live with multimorbidity. Little is understood about the cumulative impact of old age, cancer and multimorbidity on self-management. This qualitative systematic review and synthesis aimed to identify what influences self-management from the perspective of older adults living with cancer and multimorbidity.

Does quality of life return to pre-treatment levels five years after curative intent surgery for colorectal cancer? Evidence from the ColoREctal Wellbeing (CREW) study.

Background: The ColoREctal Wellbeing (CREW) study is the first study to prospectively recruit colorectal cancer (CRC) patients, carry out the baseline assessment pre-treatment and follow patients up over five years to delineate the impact of treatment on health and wellbeing.

Methods: CRC patients received questionnaires at baseline (pre-surgery), 3, 9, 15, 24, 36, 48 and 60 months. The primary outcome was Quality of Life in Adult Cancer Survivors (QLACS); self-efficacy, mental health, social support, affect, socio-demographics, clinical and treatment characteristics were also assessed.

Peer Mentors for People with Advanced Cancer: Lessons Learnt from Recruiting and Training Peer Mentors for a Feasibility Randomized Controlled Trial.

Peer mentors may offer distinctive forms of support to people with advanced cancer. Whilst peer mentor programmes are known, little is understood about recruiting and training peer mentors to support those with advanced cancer. The purpose of this study is to determine the feasibility of recruiting and training peer mentors for a novel peer mentor intervention to promote well-being in people with advanced cancer.

The ENABLE study protocol: Understanding and characterising the value and role of self-management support for people living with cancer that is treatable but not curable.

Objective: Attention is turning to the needs of people living with treatable but incurable cancer, a group with complex needs, living with uncertainty over time. More research is needed to understand how this group self-manage the impact of cancer to strengthen the evidence base for interventions. This study aims to understand the value and outcomes of self-management support for people living with treatable but incurable cancer.