Supporting people with active and advanced disease: a rapid review of the evidence

1.1 Background: the NCSI AAD group The National Cancer Survivorship Initiative (NCSI, 2010) was set up in response to the NHS Cancer Reform Strategy (Department of Health, 2007) as a collaboration between Macmillan Cancer Support, the Department of Health and NHS Improvement, with the goal to achieve a better understanding of the experiences of cancer survivors and to advocate for the provision of services to support them. Within this broad remit, it was recognised that there was a particular group of patients whose needs were commonly neglected; people who were experiencing the ongoing effects of cancer beyond first-line treatment but who were not at end of life. The Active and Advanced Disease (AAD) working group was created to consider issues of relevance to such people. 1.2 Aims of this review This project set out to meet the following aim: To review the literature on selected cancers in order to identify implications for the development of services to support patients experiencing difficulties associated with active and advanced disease

“Is there anything else you would like to tell us?” – A thematic analysis of free-text comments from a self-management questionnaire with people affected by cancer

Background: Researchers are frequently using open-ended questions at the end of questionnaires that invite respondents to add, in their own words, further information about issues covered in the questionnaire. The aim of this study was to present the qualitative findings from the further information section at the end of a questionnaire that was designed to collect data on aspects of self-management in people affected by cancer. Methods: Respondents were asked: ‘Thinking about how you manage your health and health care, if there is anything else you would like to tell us about your experience, please write in the box below.’ Free-text responses were analysed thematically. Results: 128 participants completed the free-text response at the end of the questionnaire. The main overarching theme was the concept of the participants “moving on” from cancer and developing a meaningful life for themselves following diagnosis and treatment. For most, this incorporated making adjustments to their physical, social, psychological, spiritual and emotional wellbeing. “Luck” was another overwhelming theme where many participants stated they were “glad to still be alive” and “consider myself very lucky.” Participants reported adjustments made to health behaviours such as leading an active lifestyle and making changes to their diet and nutrition. The final theme incorporates the participants identifying their main sources of support, both clinical and non-clinical, some of which they stated “could not have done it without them.” Conclusions: The findings highlight the valuable insight that free-text comments can add as a data source at the end of self-completion questionnaires with people affected by cancer

Addressing Distress Management Challenges: Recommendations From the Consensus Panel of the American Psychosocial Oncology Society and the Association of Oncology Social Work

Distress management (DM) (screening and response) is an essential component of cancer care across the treatment trajectory. Effective DM has many benefits, including improving patients’ quality of life; reducing distress, anxiety, and depression; contributing to medical cost offsets; and reducing emergency department visits and hospitalizations. Unfortunately, many distressed patients do not receive needed services. There are several multilevel barriers that represent key challenges to DM and affect its implementation. The Consolidated Framework for Implementation Research was used as an organizational structure to outline the barriers and facilitators to implementation of DM, including: 1) individual characteristics (individual patient characteristics with a focus on groups who may face unique barriers to distress screening and linkage to services), 2) intervention (unique aspects of DM intervention, including specific challenges in screening and psychosocial intervention, with recommendations for resolving these challenges), 3) processes for implementation of DM (modality and timing of screening, the challenge of triage for urgent needs, and incorporation of patient-reported outcomes and quality measures), 4) organization—inner setting (the context of the clinic, hospital, or health care system); and 5) organization—outer setting (including reimbursement strategies and health-care policy). Specific recommendations for evidence-based strategies and interventions for each of the domains of the Consolidated Framework for Implementation Research are also included to address barriers and challenges. CA Cancer J Clin 2021;71:407-436. © 2021 The Authors. CA: A Cancer Journal for Clinicians published by Wiley Periodicals LLC on behalf of American Cancer Society. This is an open access article under the terms of the Creative Commons Attribution-NonCommercial- NoDerivs License, which permits use and distribution in any medium, provided the original work is properly cited, the use is non-commercial and no modifications or adaptations are made

Survivorship Care Planning: An Evidence Based Quality Improvement Project in Breast Cancer

abstract: Cancer survivors meet survivorship with uncertainty due to a lack of uniform information provided post cancer treatment. The implementation of survivorship care plans (SCP) has been recognized by key stakeholders as the solution to transitional uncertainties. In fact, to achieve accreditation by the Commission on Cancer (CoC) cancer centers are required to deliver SCPs to cancer survivors within a year of their treatment completion. Research demonstrates SCP delivery results in significant improvement in patient satisfaction, coordination of care, and survivorship care knowledge. In order to meet CoC standard 3.3 and bring understanding to SCPs function in cancer survivorship care a quality improvement project was initiated within an Arizona cancer center. SCPs were delivered at a survivorship visit to adult breast cancer patients. SCPs affect on survivors’ confidence in cancer self-care knowledge and care satisfaction was evaluated as well as the organization’s adherence to CoC standard 3.3 requirements. Identified survivors were scheduled for a survivorship visit where a SCP was delivered by a oncology provider. Survivors perceived confidence in knowledge and satisfaction was measured using the modified 16-item Confidence in Survivorship Information Questionnaire (CSI). Questionnaires were completed pre and post survivorship visit. A paired t-test analysis was used to evaluate SCP effectiveness. There was an increase in the delivery of SCPs from zero to 57 with an 84 percent SCP delivery from August 2017 to January 2018. Survivors and providers verbalize value in SCPs. No statistical significance was found in the comparison of SCPs affect on survivors’ confidence in cancer self-care knowledge and care satisfaction to that of standard follow-up care; however, when comparing the pre/post questionnaire averages an improvement was noted across the board.The prospect of this project is to unveil the impact SCP delivery at a survivorship visit has on the selected metrics. This project aids as a director for organization wide implementation for CoC standard 3.3 requirement compliance

Design, development, and evaluation of a web-based information tool to support decisions on treatment options for people with advanced pancreatic cancer: A mixed-methods study.

The current approach to evidence-based medicine advocates the incorporation of clinical evidence with patients’ preferences when providing healthcare. However, exploring patients’ preferences is complex, especially for people diagnosed with advanced pancreatic cancer (APC), because of the associated low incidence and high mortality rates of the disease compared to other cancers. APC is incurable, and patients usually receive palliative systemic anticancer treatment (SACT). Nevertheless, SACTs have benefits, risks, and uncertainties, and recipients should be provided with the facts to enable them to participate effectively in the discussions about treatment options or abstain from active treatment. Patients and healthcare professionals (HCPs) discuss treatment options through shared decision-making (SDM) which is facilitated by web-based patient decision support tools (PDSTs). However, PDSTs that support APC patients are lacking. As a result, people with APC make difficult decisions about treatment options without these tools that can potentially support them during medical consultations. Even when these PDSTs are available, they often suffer from practical adoption in healthcare. Therefore, this study aimed to explore the feasibility and acceptability of a web-based treatment information tool (WIT) for people diagnosed with APC who are considering treatment options for their situation. To achieve the aim of the study, a multi-phase mixed-methods approach was adopted, which includes (1) needs assessment using interviews and focus groups, (2) synthesis of medical evidence through systematic review and network meta- analysis of randomised controlled trials, (3) design and (4) evaluation of a WIT through a human-centred design (HCD) approach. Participants were adult patients diagnosed with APC and their relatives, clinical nurse specialists, medical oncologists, and allied healthcare personnel recruited from two National Health Service Foundation Trusts in Southwest England and the Pancreatic Cancer UK Research Involvement Network. A total of 28 participants (nine patients, four relatives, seven nurse specialists, five specialist doctors, and three members of the public) were involved in various phases of the study. Three main themes were identified from the needs assessment: facilitators and barriers to making choices, the importance of providing accessible information, and the ever-changing treatment experience. A review of the medical evidence suggests the necessity of considering multiple outcomes, such as survival, side effects and quality of life information, for APC treatment decision-making. The developed WIT demonstrated the potential to provide adequate information about the benefits, side effects and quality-of-life information of APC chemotherapy regimens for patients, relatives, and HCPs. However, the WIT’s acceptability depended on its suitability for patients as perceived by HCPs. Furthermore, the primary usability themes from the evaluation of the WIT were information sufficiency, information clarity, information relevance, user preferences, and programming defects. This study’s contribution includes an in-depth understanding of the information needs and challenges of APC treatment following a diagnosis; synthesis of the efficacy, safety, and quality-of-life information of APC chemotherapy regimens; a set of design guidelines for PDST implementation; and the application of the HCD approach among APC patients highlighting the significance and necessity of interdisciplinary research for designing PDSTs for vulnerable users. Further research is needed to assess the WIT’s effectiveness in SDM, enhance the acceptability of PDSTs among HCPs, and validate the design guidelines for widespread use

The Comprehensive Cancer Center

This open access book provides a valuable resource for hospitals, institutions, and health authorities worldwide in their plans to set up and develop comprehensive cancer care centers. The development and implementation of a comprehensive cancer program allows for a systematic approach to evidence-based strategies of prevention, early detection, diagnosis, treatment, and palliation. Comprehensive cancer programs also provide a nexus for the running of clinical trials and implementation of novel cancer therapies with the overall aim of optimizing comprehensive and holistic care of cancer patients and providing them with the best opportunity to improve quality of life and overall survival. This book's self-contained chapter format aims to reinforce the critical importance of comprehensive cancer care centers while providing a practical guide for the essential components needed to achieve them, such as operational considerations, guidelines for best clinical inpatient and outpatient care, and research and quality management structures. Intended to be wide-ranging and applicable at a global level for both high and low income countries, this book is also instructive for regions with limited resources. The Comprehensive Cancer Center: Development, Integration, and Implementation is an essential resource for oncology physicians including hematologists, medical oncologists, radiation oncologists, surgical oncologists, and oncology nurses as well as hospitals, health departments, university authorities, governments and legislators

Quality of life support in advanced cancer – Web and technological interventions: systematic review and narrative synthesis

Background As treatments continue to progress, patients with advanced cancer are living longer. However, ongoing physical side-effects and psychosocial concerns can compromise quality of life (QoL). Patients and physicians increasingly look to the internet and other technologies to address diverse supportive needs encountered across this evolving cancer trajectory. Objectives 1. To examine the features and delivery of web and technological interventions supporting patients with advanced cancer. 2. To explore their efficacy relating to QoL and psychosocial well-being. Methods Relevant studies were identified through electronic database searches (MEDLINE, PsychINFO, Embase, CINAHL, CENTRAL, Web of Science and ProQuest) and handsearching. Findings were collated and explored through narrative synthesis. Results Of 5274 identified records, 37 articles were included. Interventions were evaluated within studies targeting advanced cancer (13) or encompassing all stages (24). Five subtypes emerged: Interactive Health Communication Applications (n=12), virtual programmes of support (n=11), symptom monitoring tools (n=8), communication conduits (n=3) and information websites (n=3). Modes of delivery ranged from self-management to clinically integrated. Support largely targeted psychosocial well-being, alongside symptom management and healthy living. Most studies (78%) evidenced varying degrees of efficacy through QoL and psychosocial measures. Intervention complexity made it challenging to distinguish the most effective components. Incomplete reporting limited risk of bias assessment. Conclusion While complex and varied in their content, features and delivery, most interventions led to improvements in QoL or psychosocial well-being across the cancer trajectory. Ongoing development and evaluation of such innovations should specifically target patients requiring longer-term support for later-stage cancer