Patient experiences of nurse-led telephone follow-up after treatment for colorectal cancer.

Purpose Colorectal cancer is the third most prevalent cancer worldwide, although mortality rates across most of Europe have decreased in recent years. Historically, patients are asked to return to hospital outpatient clinics following treatment to monitor for disease progression. However, new approaches are being called for that focus on meeting the information and support needs of patients. Telephone follow-up (TFU) by specialist nurses is an alternative approach; this study aimed to explore patient views of TFU. Methods Qualitative interviews were conducted with 26 colorectal cancer patients who had received TFU. One interview was also conducted with the specialist nurse who had used a structured intervention to provide TFU. Data were analysed using content analysis. Results All patients found TFU to be a positive experience and all stated a preference for continuing with TFU. Three main themes emerged from the patient interviews; 1) accessible and convenient care, 2) personalised care, and 3) relationship with the specialist nurse. The themes from the specialist nurse interview were 1) knowing the patient, 2) the benefits of TFU and 3) the challenges of TFU. Conclusions TFU was well received by patients; it was perceived as highly convenient and had distinct advantages over hospital follow-up. Continuity of care was an important factor in building a trusting relationship between patient and nurse. Training in the use of the intervention is recommended and it may be useful for specialist nurses to initially meet eligible patients face to face to establish rapport before implementing TFU

Audio-recording cancer consultations for patients and their families—putting evidence into practice

This chapter aims to briefly review the empirical literature on the value of consultation audio-recordings for patients and families; conduct a theory-driven examination of the factors that limit practice uptake of this intervention; and provide practical suggestions for how these factors might best be addressed to enhance clinical uptake of consultation audio-recording use. The Promoting Action on Research Implementation in Health Services (PARIHS) Framework is used to examine the impact of scientific evidence, context-specific factors, and facilitation principles, as these pertain to the uptake of consultation audio-recording in practice. Important considerations in efforts to implement a consultation audio-recording service are provided, including leadership, perceived value and benefit, resource costs, technological practicalities, litigation concerns, and staff training and support. Both top-down and bottom-up approaches to implementation are recommended to enhance the likelihood of successful uptake into practice

Secret Groups and Open Forums: Defining Online Support Communities from the Perspective of People Affected by Cancer

Objective: A quarter of people diagnosed with cancer lack social support. Online cancer communities could allow people to connect and support one another. However, the current proliferation of online support communities constitute a range of online environments with differing communication capacities and limitations. It is unclear what is perceived as online cancer community support and how different features can help or hinder supportive group processes. This study aimed to explore how perceived support is influenced by the different features and formats of online support environments. Methods: In-depth qualitative interviews were conducted with 23 individuals affected by a range of cancer diagnoses, including both cancer survivors and family members. Data were analysed using deductive thematic analysis guided by a constructivist epistemological perspective. Findings: Online supportive communities were defined and differentiated by two themes. Firstly, ‘Open forums’ were identified with thematic properties which facilitated a uniquely informative environment including ‘Safety in Anonymity’, ‘Perceived Reliability’ and ‘Exposure and Detachment’. Secondly, ‘Secret groups’ were identified with thematic properties which enhanced an emotionally supportive environment including ‘Personalised Interactions’, an overt ‘Peer Hierarchy’, and ‘Crossing the Virtual Divide’. Conclusions: Properties of groups can engender different degrees of interpersonal relations and different supportive interactions. In particular, support community designers may want to adapt key features such as anonymity, trustworthiness of websites, and the personalised nature of conversations to influence the development of supportive environments. In personalised peer-led groups, it may be prudent to provide guidance on how to reassert a positive environment if arguments break out online

An exploratory randomised controlled trial comparing telephone and hospital follow-up after treatment for colorectal cancer

Aim:  Following treatment for colorectal cancer it is common practice for patients to attend hospital clinics at regular intervals for routine monitoring, although debate persists on the benefits of this approach. Nurse-led telephone follow-up is effective in meeting information and psycho-social needs in other patient groups. We explored the potential benefits of nurse-led telephone follow-up for colorectal cancer patients. Method:  Sixty-five patients were randomised to either telephone or hospital follow-up in an exploratory randomised trial. Results:  The telephone intervention was deliverable in clinical practice and acceptable to patients and health professionals. Seventy-five percent of eligible patients agreed to randomization. High levels of satisfaction were evident in both study groups. Appointments in the hospital group were shorter (median 14.0 minutes) than appointments in the telephone group (median 28.9 minutes). Patients in the telephone arm were more likely to raise concerns during consultations. Conclusion:  Historical approaches to follow-up unsupported by evidence of effectiveness and efficiency are not sustainable. Telephone follow-up by specialist nurses may be a feasible option. A main trial comparing hospital and telephone follow-up is justified although consideration needs to be given to trial design and practical issues related to the availability of specialist nurses at study locations

Cancer through black eyes - The views of UK based black men towards cancer: A constructivist grounded theory study

Purpose: Little is known about black African (BA) and black African-Caribbean (BAC) men's views towards cancer; yet culture and acculturation can contribute to the way in which people understand, explain and develop their attitudes towards cancer. Hence, cancer prevention and early detection strategies may not be sensitive to United Kingdom (UK)-based black men's views, affecting their awareness of risk factors and early detection services. This study explored the views of UK-based BA and BAC men towards cancer. Method: In collaboration with black community organisations based in four major cities in the UK, 25 participants were recruited using convenience and theoretical sampling methods. Data were collected using 33 semi-structured interviews, and analysed using grounded theory analytic procedures. Results: One core category (cancer through black eyes) and seven sub-categories emerged; ‘cultural views’, ‘religious beliefs’, ‘avoiding Babylon’, ‘alienation’, ‘suspicious mind’, ‘advertisements and information influence very little’, and ‘gap in service provision (bridging the gap)’. Participants' views towards cancer were linked to socially constructed perspectives, linked with cultural and religious beliefs, and shaped by what being a black male means in society. Risk factors such as smoking and obesity had different meanings and symbolisation through black eyes. There were macro- and micro-level similarities and differences between BA and BAC men. Conclusions: Cancer services and related public-health campaigns aimed at black men need to understand cancer through black eyes. Public health campaigns based solely on the clinical meaning of cancer are incongruent with black men's understandings of cancer, and therefore ineffective at reducing health inequality

Patient initiated follow-up in cancer patients: A systematic review

Background: Patient-initiated follow-up (PIFU) is increasingly being implemented for oncology patients, particularly during the COVID-19 pandemic, given the necessary reduction in face-to-face hospital outpatient appointments. We do not know if PIFU has a positive (or negative) impact on overall, or progression free, survival. Objectives: To investigate the impact of PIFU on overall survival, progression free survival, patient satisfaction, psychological morbidity, specifically quality of life (QoL) and economic costs compared to hospital follow up (HFU), for any type of cancer. Methods: We carried out a systematic review using five electronic databases: MEDLINE, CINAHL, EMBASE, PsycInfo and Cochrane Central Register of Controlled Trials. Studies were eligible if they were controlled clinical trials comparing PIFU with another form of active follow-up. Effectiveness was assessed using the primary outcome of overall survival and secondary outcomes of progression free survival, patient satisfaction, psychological morbidity, QoL and cost effectiveness. Results: Eight studies met the inclusion criteria and were included. Only one study included survival as a primary outcome and indicated no significant differences between hospital-based follow-up and PIFU, although not adequately powered to detect a difference in survival. For secondary outcomes, few differences were found between PIFU and other forms of active follow-up. One study reported significant differences in fear of cancer recurrence between PIFU and HFU although did not reach the limit of clinical significance; in the short term, fear decreased significantly more in hospital based follow-up. Conclusion: We do not have evidence to support the impact of PIFU on survival or progression free survival. Fully powered randomized controlled trials are required to determine the full impact of PIFU in the longer term

Using experience-based co-design to prioritise areas for improvement for patients recovering from critical illness

Critical illness recovery is a journey; from intensive care unit to hospital ward to home. However, evidence is limited on how best to enable recovery from critical illness. This study aimed to prioritise areas for improvement in care and services for patients recovering from critical illness. This study used experience-based co-design. Service users and providers worked in partnership to identify and prioritise service improvements for patients who had survived an episode of critical illness. Qualitative interviews were carried out with patients (n = 10) who had experienced critical illness, and staff (n = 9) who had experienced caring for patients in the intensive care unit. Key patient touchpoints were identified and used to produce a film, reflecting the critical illness journey. A patient feedback event incorporated an emotional mapping exercise, to identify key points during the recovery journey. A joint patient/family (n = 10) and staff (n = 10) event was held to view the film and identify priorities for improvements. Emotional mapping highlighted areas where services were not synchronised with patients' needs. Four patient-focussed priorities for service improvement emerged 1. Improving the critical care experience, 2. Addressing patients' emotional and psychological needs, 3. Positioning patients at the centre of services and 4. Building a supportive framework for recovery. Evidence-based co-design was used successfully in this study to identify priorities for improvements for patients recovering from critical illness. This approach positions patients at the centre of service improvements and realigns care delivery around what matters most to patients. Person-centred care provision underpins all identified priorities. Intensive care unit staff should get to know patients and their families by talking more to patients and families about their care and engaging in more non-medical conversations. Emotional and psychological support should be provided to aid rehabilitation and recovery from critical illness in the intensive care unit, on general wards, and in the community. Information and services should be available when patients need them, rather than at fixed time points or settings. Recovery services should focus on enabling and building the self-efficacy of patients to empower them to be in control of their recovery journey. [Abstract copyright: Copyright © 2023 The Authors. Published by Elsevier Ltd.. All rights reserved.

The Patient Needs Assessment in Cancer Care: Identifying Barriers and Facilitators to Implementation in the UK and Canada

Purpose Personalised information and support can be provided to cancer survivors using a structured approach. Needs assessment tools such as the Holistic Needs Assessment (HNA) in the United Kingdom and the Comprehensive Problem and Symptom Screening (COMPASS) questionnaire in Canada are recommended for use in practice; however, they are not widely embedded into practice. The study aimed to determine the extent to which nurses working in cancer care in the UK and Manitoba value NA and identify any barriers and facilitators they experience. Method Oncology nurses involved in the care of cancer patients in the UK (n=110) and Manitoba (n=221) were emailed a link to an online survey by lead cancer nurses in the participating institutions. A snowball technique was used to increase participation across the UK resulting in 306 oncology nurses completing the survey in the UK and 116 in Canada. Results Participants expressed concerns that these assessments were becoming bureaucratic “tick-box exercises” which did not meet patients’ needs. Barriers to completion were time, staff shortages, lack of confidence, privacy and resources. Facilitators were privacy for confidential discussions, training, confidence in knowledge and skills, and referral to resources. Conclusion Many busy oncology nurses completed this survey demonstrating the importance they attach to HNAs and COMPASS. The challenges faced with implementing these assessments into everyday practice require training, time, support services and an appropriate environment. It is vital that the HNA and COMPASS are conducted at optimum times for patients to fully utilise time and resources

Exploring health care professionals views on alternative approaches to cancer follow-up and barriers and facilitators to implementation of a Recovery Package

Purpose To meet the long-term needs of cancer survivors the focus of recent cancer care reform in the United Kingdom (UK) has been the implementation of alternative follow-up strategies to relieve the growing pressures threatening to overwhelm cancer services. In 2013, the UK's National Cancer Survivorship Initiative recommended an integrated package of care called the Recovery Package to meet cancer survivors' psychosocial and information needs and supported self-management. Method We aimed to explore health care professionals’ views of alternative strategies for follow-up care, and perceived barriers and facilitators to implementation of the Recovery Package for patients who had completed treatment for cancer. Semi-structured interviews with 19 participants sought views and experiences of key aspects of cancer care follow-up and aspects of the Recovery Package implementation. Results Seven themes emerged from the data; sustainability and capacity, cost implications, primary care, self-management, recovery package, resistance to change, and visions for the future. Traditional hospital follow-up was considered suitable for patients with complex needs, rarer forms of cancer and/or a poorer prognosis. Risk stratification was considered a vital element of any future strategy as was interoperability of digital communication systems between health care providers. Charitable funding had enabled one site to introduce all elements of the recovery package for patients with common cancers. Conclusion Charitable funding had enabled implementation of elements of the Recovery Package. However, new approaches require services to be commissioned and funded appropriately with effective communication between patients and primary and secondary care facilitated by interoperability of health care records