Follow-up after curative treatment for colorectal cancer: longitudinal evaluation of patient initiated follow-up in the first 12 months.

PURPOSE: To compare patient-triggered follow-up (PTFU) for curatively treated colorectal cancer against traditional outpatient follow-up (OPFU). METHODS: Questionnaires were mailed at four time points over one-year post-treatment to two prospectively-recruited cohorts: A, patients entering follow-up and receiving OPFU pre-implementation of PTFU; B, patients entering follow-up (FU) and receiving either OPFU (B1) or PTFU (B2) post-implementation of PTFU. Bi-variate tests were used to compare patient characteristics and outcomes eight months after entering follow-up (generic and cancer-specific quality of life (QoL), satisfaction). Regression analysis explored associations between follow-up model and outcomes. Resource implications and costs of models were compared. RESULTS: Patients in Cohort B1 were significantly more likely to have received chemotherapy (p < 0.001), radiotherapy (p < 0.05), and reported poorer QoL (p = 0.001). Having a longstanding co-morbid condition was the most important determinant of QoL (p < 0.001); model of care was not significant. Patients were satisfied with their follow-up care regardless of model. Health service costs were higher in PTFU over the first year CONCLUSIONS: PTFU is acceptable to patients with colorectal cancer and can be considered to be a realistic alternative to OPFU for clinically suitable patients. The initial costs are higher due to provision of a self-management (SM) programme and remote surveillance. Further research is needed to establish long-term outcomes and costs.

Facilitating early diagnosis of lung cancer amongst primary care patients: The views of GPs.

Early diagnosis of lung cancer (LC) is a policy priority. However, symptoms are vague, associated with other morbidities, and frequently unrecognised by both patients and general practitioners (GPs). This qualitative study, part of a larger mixed methods study, explored GP views regarding the potential for early diagnosis of LC within primary care. Five focus group discussions (FGDs) were conducted with GPs (n = 16) at primary care practices (n = 5) across four counties in south England. FGDs were audio-recorded, transcribed verbatim and analysed using a framework approach. Four broad themes emerged: patients' reporting of symptoms; GP response to symptoms; investigating LC, and; potential initiatives for early diagnosis. GPs reported they often required high levels of suspicion to refer patients on to specialist respiratory consultations, and concerns of 'system overload' were prevalent. Greater access to more sensitive diagnostic investigations such as computed tomography, was argued for by some, particularly for symptomatic patients with negative chest X-rays. GPs challenged current approaches to promoting earlier diagnosis through national symptom awareness campaigns, arguing instead that interventions targeted at high-risk individuals might be more effective without burdening services already under pressure. Further work is needed to identify primary care patients who might most benefit from such targeted interventions.

A qualitative metasynthesis exploring the impact of prostate cancer and its management on younger, unpartnered and gay men.

Prostate cancer (PCa) can negatively impact on men's sexual, urinary and emotional functioning, affecting quality of life. Most men with PCa are older (≥65 years), married and heterosexual and little is known about the impact on men who are younger, unpartnered or gay. We aimed to synthesise existing qualitative research on these three groups of men. A systematic metasynthesis was undertaken that included data on the unique impacts of PCa on younger (<65 years) (n = 7 papers), unpartnered (n = 17 papers) or gay or bisexual men (n = 11 papers) using a modified meta-ethnographic approach. The three overarching constructs illustrated the magnified disruption to men's biographies, that included: marginalisation, isolation and stigma-relating to men's sense of being "out of sync"; the burden of emotional and embodied vulnerabilities and the assault on identity-illustrating the multiple threats to men's work, sexual and social identities; shifting into different communities of practice-such as the shift from being part of a sexually active community to celibacy. These findings suggest that PCa can have a particular impact on the quality of life of younger, unpartnered and gay men. This has implications for the provision of tailored support and information to these potentially marginalised groups.

Treatment-related problems experienced by cancer patients undergoing chemotherapy: a scoping review.

Cancer patients undergoing chemotherapy experience a range of treatment-related problems, and variations in prevalence exist between treatment centres. A scoping review was undertaken to map reported rates of problem prevalence in the literature. This will inform development of a patient-reported outcome measure (PROM) to monitor prevalence and severity of problems over time and assist service providers optimise supportive care provision. Two databases (Embase and Medline) were searched from 2002 to 2013. Fifty one published papers and conference abstracts reporting problem prevalence rates were identified. The papers reported 98 different problems, from which a typology of 27 problem domains was developed, including both physical symptoms and psychosocial issues. The problem domains most often studied were nausea, vomiting and fatigue. This review reflects the chemotherapy-associated problems to which researchers attach the most importance. The range in reported prevalence across studies was very broad (e.g. nausea: 9-74%), with even less frequently studied problems showing high prevalence in some studies (e.g. gynaecological problems: up to 94%). The wide variation in prevalence and range of problems experienced raises challenges for PROM development. Patients should therefore be involved in consensus exercises to assist selection of items to ensure any instrument is complete and robust.

Coping with and factors impacting upon the experience of lung cancer in patients and primary carers.

There is a paucity of research exploring patients' and their informal carers' experience of coping with and factors impacting on the lung cancer experience. This study aims to explore how patients and their informal carers cope with a diagnosis of lung cancer and describe the key factors that mediate distress in this population in order that they may be better supported in the future. This was a qualitative study employing semi-structured interviews and framework analysis to elicit the experience of 37 patients with lung cancer and 23 primary carers regarding their coping with and factors influencing patient/carer distress. The findings illustrate that participants used both emotional- and problem-focused coping strategies, including accepting the reality of lung cancer, adopting a positive attitude/fighting spirit, denial, avoidance and distraction and information seeking. Maintaining normality was also important. Key factors that mediate the lung cancer experience were also identified including hope, social network, prior experience of cancer and other chronic illnesses, the competing coping strategies of patients and their primary carers, the unpredictable nature of patients' behaviour, changing symptomatology, the perceived attitudes of health professionals and the impact of perceived delays in diagnosis. This study provides important insights into how patients with lung cancer and their primary carers might be better supported.

"No Official Help Is Available"-Experience of Parents and Children With Congenital Heart Disease During COVID-19.

INTRODUCTION: The purpose was to explore the experience, information and support needs, and decision-making of parents of children with congenital heart disease (CHD), as well as the children/young people themselves, during the COVID-19 crisis. MATERIALS AND METHODS: A survey study of parents of children with CHD, children and young people, capturing experiences, decision-making, information, and support needs during the COVID-19 crisis was conducted. The survey launched for one month (April 9, 2020) during the first infection wave in the United Kingdom and subsequent restriction of free movement under lockdown rules from March 23, 2020, until May 31, 2020. RESULTS: One hundred eighty-four parents and 36 children/young people completed the survey. Parents were more likely to worry about the virus (86.4%) than children/young people (69.4%), while (89%) parents were more vigilant for symptoms of the virus versus children/young people (69.4%). A thematic analysis of the qualitative comments covered 34 subthemes, forming eight overarching themes: Virus-(1) risk of infection; (2)information, guidance, and advice; (3) change in health care provision; and (4) fears and anxieties, and lockdown and isolation-(5) psychological and social impact, (6) keeping safe under lockdown, (7) provisions and dependence on others, and (8) employment and income. CONCLUSIONS: There was widespread concern over the virus especially among parents. Parents and children/young people, however, were frustrated with the lack of specific and pediatric-focused information and guidance, expressing disappointment with the adult-centric information available. Parents also felt alone, especially with their concerns around the implications of cardiac service suspension and the implication for their child's health. In order to better support children and their families, resources need to be developed to address families' and children/young people's concerns for their health during this pandemic.

Uncertainty and anxiety in the cancer of unknown primary patient journey: a multiperspective qualitative study.

BACKGROUND: Patients with cancer of unknown primary (CUP) have metastatic malignant disease without an identifiable primary site; it is the fourth most common cause of cancer death. OBJECTIVES: To explore patients' informal and professional carers' experiences of CUP to inform development of evidence-based, patient-centred care. METHODS: Qualitative study involving development of multiple exploratory case studies, each comprising a patient and nominated informal and professional carers, with contextual data extracted from medical records. RESULTS: 17 CUP patients, 14 informal and 13 professional carers participated in the study. Two inter-related themes distinct to CUP emerged: uncertainty and continuity of care. In the absence of a primary diagnosis, patients and informal carers experienced uncertainty regarding prognosis, possible recurrence and the primary's hereditary potential. Professional carers experienced difficulty communicating uncertainty to patients, ambiguity in deciding optimal treatment plans in the absence of trial data and a test or treat dilemma: when to discontinue seeking the primary and start treatment. Common problems with care continuity were amplified for CUP patients relating to coordination, accountability and timeliness of care. The remit of multidisciplinary teams (MDTs) often excluded CUP, leading to "MDT tennis" where patients were "bounced" between MDTs. CONCLUSIONS: The experience of those with CUP is distinctive and it can serve to amplify some of the issues encountered by people with cancer. The clinical uncertainties related to CUP compound existing shortcomings in continuity of care, increasing the likelihood of a disrupted patient journey. However, while little can be done to overcome uncertainty, more could be done to address issues regarding continuity of care.