Provision of oncology services in remote rural areas: a Scottish perspective

There is a paucity of research into rural health care services. In particular little is known about the provision of specialist cancer services for patients who live in remote rural areas of the UK. This study set out to investigate current models of medical and clinical oncology care in Scotland. A national survey with key health professionals was conducted to identify rural oncology schemes currently in operation. Detailed quantitative data about the schemes together with qualitative data on how health professionals view current models of care were collected by a computer-assisted telephone survey. Schemes that currently provide outpatient and chemotherapy oncology services for remote rural patients fell into three categories: central clinics (5); shared care outreach clinics with chemotherapy provision (11); and shared care outreach clinics without chemotherapy provision (7). All radiotherapy was conducted at central clinics (5). Widely varying practices in delivery of cancer care were found across the country. The main issues for professionals about current models of care involved expertise, travelling and accessibility (for patients), communication and expansion of the rural service. Nation-wide consistency in cancer care has still to be achieved. Travelling for treatment was seen to take its toll on all patients but particularly for the very remote, elderly and poor. Most professionals believe that an expansion of rural services would be of benefit to these patients. It is clear, however, that the proper infrastructure needs to be in place in terms of local expertise, ensured quality of care, and good communication links with cancer centres before this could happen.     

Patients' and professionals' opinions of services for people at an increased risk of colorectal cancer: an exploratory qualitative study

OBJECTIVES: To explore the views and opinions of patients with a family history of colorectal cancer, and of primary and secondary care health professionals, on how to improve current services for individuals with a family history of colorectal cancer. DESIGN: Focus group and interview study. SETTING: Primary and secondary care centres in south east London, UK. PARTICIPANTS: A total of 53 people participated in this qualitative study: 18 individuals with a family history of colorectal cancer were interviewed in three focus groups and 35 health professionals were interviewed either in focus groups or individually. Visual qualitative analysis of transcribed interviews was used to identify the key themes which emerged. MAIN OUTCOME MEASURES: Interviewees' needs, views and opinions of current services and ways to improve them. RESULTS: Several areas of concern were identified. The role of primary care needs to be clarified. Education and information about services should be provided for patients and caregivers and better support is required for those undergoing screening and surveillance. Methods to ensure effective and meaningful risk communication are inadequate and require further exploration. Standardisation of care is required to ensure consistency of advice and treatment. CONCLUSION: These interviews revealed substantial shortfalls in the provision of services for patients at increased genetic risk of colorectal cancer. Current systems for the assessment of risk, delivery of advice, and for surveillance are inconsistent and sometimes maybe inadequate. The role of primary care physicians in service delivery requires clarification. Significant opportunities exist for the development of new, more appropriate models of service to provide better standards of care.     

A systematic review of rehabilitation and exercise recommendations in oncology guidelines

Guidelines promote high quality cancer care. Rehabilitation recommendations in oncology guidelines have not been characterized and may provide insight to improve integration of rehabilitation into oncology care. This report was developed as a part of the World Health Organization (WHO) Rehabilitation 2030 initiative to identify rehabilitation-specific recommendations in guidelines for oncology care. A systematic review of guidelines was conducted. Only guidelines published in English, for adults with cancer, providing recommendations for rehabilitation referral and assessment or interventions between 2009 and 2019 were included. 13840 articles were identified. After duplicates and applied filters, 4897 articles were screened. 69 guidelines were identified with rehabilitation-specific recommendations. Thirty-seven of the 69 guidelines endorsed referral to rehabilitation services but provided no specific recommendations regarding assessment or interventions. Thirty-two of the 69 guidelines met the full inclusion criteria and were assessed using the AGREE II tool. Twenty-one of these guidelines achieved an AGREE II quality score of ≥ 45 and were fully extracted. Guidelines exclusive to pharmacologic interventions and complementary and alternative interventions were excluded. Findings identify guidelines that recommend rehabilitation services across many cancer types and for various consequences of cancer treatment signifying that rehabilitation is a recognized component of oncology care. However, these findings are at odds with clinical reports of low rehabilitation utilization rates suggesting that guideline recommendations may be overlooked. Considering that functional morbidity negatively affects a majority of cancer survivors, improving guideline concordant rehabilitative care could have substantial impact on function and quality of life among cancer survivors.     

Alternative payment and care‐delivery models in oncology: A systematic review

Rising US health care costs have led to the creation of alternative payment and care‐delivery models designed to maximize outcomes and/or minimize costs through changes in reimbursement and care delivery. The impact of these interventions in cancer care is unclear. This review was undertaken to describe the landscape of new alternative payment and care‐delivery models in cancer care. In this systematic review, 22 alternative payment and/or care‐delivery models in cancer care were identified. These included 6 bundled payments, 4 accountable care organizations, 9 patient‐centered medical homes, and 3 other interventions. Only 12 interventions reported outcomes; the majority (n = 7; 58%) improved value, 4 had no impact, and 1 reduced value, but only initially. Heterogeneity of outcomes precluded a meta‐analysis. Despite the growth in alternative payment and delivery models in cancer, there is limited evidence to evaluate their efficacy. Cancer 2018. © 2018 American Cancer Society.     

Advancing a comprehensive cancer care agenda for children and their families: Institute of Medicine Workshop highlights and next steps

This article highlights key findings from the “Comprehensive Cancer Care for Children and Their Families” March 2015 joint workshop by the Institute of Medicine (IOM) and the American Cancer Society. This initiative convened more than 100 family members, clinician investigators, advocates, and members of the public to discuss emerging evidence and care models and to determine the next steps for optimizing quality‐of‐life outcomes and well‐being for children and families during pediatric cancer treatment, after treatment completion, and across the life spectrum. Participants affirmed the triple aim of pediatric oncology that strives for every child with cancer to be cured; provides high‐quality palliative and psychosocial supportive, restorative, and rehabilitative care to children and families throughout the illness course and survivorship; and assures receipt of high‐quality end‐of‐life care for patients with advancing disease. Workshop outcomes emphasized the need for new pediatric cancer drug development and identified critical opportunities to prioritize palliative care and psychosocial support as an integral part of pediatric cancer research and treatment, including the necessity for adequately resourcing these supportive services to minimize suffering and distress, effectively address quality‐of‐life needs for children and families at all stages of illness, and mitigate the long‐term health risks associated with childhood cancer and its treatment. Next steps include dismantling existing silos and enhancing collaboration between clinical investigators, disease‐directed specialists, and supportive care services; expanding the use of patient‐reported and parent‐reported outcomes; effectively integrating palliative and psychosocial care; and clinical communication skills development. CA Cancer J Clin 2016;66:398–407. © 2016 American Cancer Society.     

Medical models of teleoncology: Current status and future directions

Teleoncology has been adopted by many centers to provide cancer care closer to home for rural, remote, Indigenous and other disadvantaged people of our communities. A variety of medical models of teleoncology exist to provide various medical oncology services. While most centers use teleoncology to complement their face‐to‐face outreach services, some centers have replaced face‐to‐face with teleoncology models. Selection of patients and scheduling of clinics would depend on various factors including experience of the clinicians, complexity of treatment provided, capabilities and workforce of rural sites, and patient preferences. Many small studies reported high satisfaction rates of these models among patients and health professionals including Indigenous populations. One single center study reports that it is safe to supervise chemotherapy delivery remotely and many studies report cost savings to the health systems. Further studies on safety aspects of teleoncology are needed to further improve the current models. Future teleoncology models would need to include Web‐based models, mobile technologies and remote chemotherapy supervision models so that patients from most rural towns could have at least some of their cancer care closer to home.     

A systematic literature review of trials of survivorship interventions for women with gynaecological cancer and their caregivers

Core components of survivorship care include treatment of late and long‐term effects, care coordination, promotion of psychological well‐being, health and addressing special populations’ needs. Women affected by gynaecological cancer and their caregivers can experience disease‐specific issues. This review presents an overview of survivorship interventions that have been trialled among this population. Databases were searched in October/November 2016 to identify eligible studies. Titles, abstracts then full‐text were assessed for inclusion by two reviewers until consensus was reached. Data were abstracted using standard tables. Study quality was independently appraised. Twenty‐eight articles were included (five reviews; 23 trials). In regards to late and long‐term treatment effects, our review found mounting high‐level evidence for the effectiveness of psycho‐educational programmes to improve physical aspects of sexual function and for exercise interventions for reducing fatigue. We also found emerging evidence for nurse‐led follow‐up care to improve care coordination and cognitive behavioural therapy to improve psychological wellbeing. There were gaps in the evidence for interventions to effectively address psychosexual issues specific to gynaecological cancer and needs of caregivers. Further research is required to explore strategies to improving psychosexual concerns after gynaecological cancer and the dynamics and supportive care needs of the patient‐partner dyad.     

Follow the trail: Using insights from the growth of palliative care to propose a roadmap for cancer rehabilitation

Despite research explicating the benefits of cancer rehabilitation interventions to optimize physical, social, emotional, and vocational functioning, many reports document low rates of referral to and uptake of rehabilitation in oncology. Cancer rehabilitation clinicians, researchers, and policy makers could learn from the multidisciplinary specialty of palliative care, which has benefited from a growth strategy and has garnered national recognition as an important and necessary aspect of oncology care. The purpose of this article is to explore the actions that have increased the uptake and integration of palliative care to yield insights and multimodal strategies for the development and growth of cancer rehabilitation. After examining the history of palliative care and its growth, the authors highlight 5 key strategies that may benefit the field of cancer rehabilitation: 1) stimulating the science in specific gap areas; 2) creating clinical practice guidelines; 3) building clinical capacity; 4) ascertaining and responding to public opinion; and 5) advocating for public policy change. Coordinated and simultaneous advances on these 5 strategies may catalyze the growth, utilization, and effectiveness of patient screening, timely referrals, and delivery of appropriate cancer rehabilitation care that reduces disability and improves quality of life for cancer survivors who need these services.     

Policy issues related to the rehabilitation of the surgical cancer patient

Four policy challenges that face the rehabilitation community in providing services to surgical cancer patients are reviewed: (1) achieving capacity to meet the complex rehabilitation needs of a growing population of cancer patients and long-term survivors; (2) identifying effective models for delivering cancer rehabilitation services; (3) understanding complex insurance coverage and payment policies and determining their effects on access to rehabilitation services; and (4) investing in clinical and health services research to guide rehabilitation practice. Recommendations are made to increase the recognition of cancer rehabilitation as an essential component of cancer survivors' care, improve access to appropriate rehabilitation services, and accelerate the pace of cancer rehabilitation research.     

Equitably improving outcomes for cancer survivors and supporting caregivers: A blueprint for care delivery,research, education,and policy

Cancer care delivery is being shaped by growing numbers of cancer survivors coupled with provider shortages, rising costs of primary treatment and follow-up care, significant survivorship health disparities, increased reliance on informal caregivers, and the transition to value-based care. These factors create a compelling need to provide coordinated, comprehensive, personalized care for cancer survivors in ways that meet survivors’ and caregivers’ unique needs while minimizing the impact of provider shortages and controlling costs for health care systems, survivors, and families. The authors reviewed research identifying and addressing the needs of cancer survivors and caregivers and used this synthesis to create a set of critical priorities for care delivery, research, education, and policy to equitably improve survivor outcomes and support caregivers. Efforts are needed in 3 priority areas: 1) implementing routine assessment of survivors’ needs and functioning and caregivers’ needs; 2) facilitating personalized, tailored, information and referrals from diagnosis onward for both survivors and caregivers, shifting services from point of care to point of need wherever possible; and 3) disseminating and supporting the implementation of new care methods and interventions.     

A national survey of healthcare professionals' views on models of follow‐up,holistic needs assessment and survivorship care for patients with head and neck cancer

Patterns of follow‐up and survivorship care are changing in response to growing numbers of cancer survivors and an increasing recognition that traditional models are unsustainable and result in unmet needs. Clinicians have shown reluctance in changing conventional follow‐up practices for patients with head and neck cancer. This study aimed to explore nurses' and allied health professionals' views and practices in relation to follow‐up, holistic needs assessment and survivorship care in this patient group. An online survey of members of the British Association of Head and Neck Oncology Nurses was undertaken. The response rate was 43% (74 of 174). Findings revealed a range of existing models of follow‐up, rehabilitation and support for people with head and neck cancer across the UK. Specialist staff were open to new models of care and to more responsibility, with adequate training and supervision. There were some gaps in the provision of comprehensive survivorship care and some specific areas of practice in which nurses lacked confidence, knowledge and skills, such as managing medications and complex symptoms. Further research is needed to develop and evaluate effective models of follow‐up and support for a growing population of head and neck cancer survivors who have diverse and complex needs.     

Rehabilitation bei Patienten mit Prostatakarzinom

Preconditions for the rehabilitation of prostate cancer patients are personal rehabilitation needs and rehabilitative ability. The aim of rehabilitation is to improve health-related quality of life by means of rehabilitation specific interventions. Defining the functional goals of rehabilitation is followed by functional assessment. To measure the success of rehabilitation, the outcome of functional measures, occupational reintegration, and prevention of the requirement for nursing care are evaluated. Following radical prostatectomy, an immediate rehabilitation program can quickly improve urinary incontinence by means of holistic continence training. Rehabilitation following prostate cancer should only be applied in qualified oncological hospitals or institutions with an integrated quality management system participating in the quality assurance programs of the public health insurance or pension insurance organizations.     

The role of district nursing: perspectives of cancer patients and their carers before and after hospital discharge

The role of the district nurse (DN) is difficult to define. Knowledge about the perspectives of patients with cancer, and their informal carers, on the roles of DNs and community services is lacking. The aim of this study is to identify the roles of DNs and community services as perceived by patients with cancer and their carers before and after hospital discharge. Seventy-one pre- and post-discharge conversational interviews were conducted with cancer patients and carers, and analysed thematically. Some interviewees lacked knowledge about services, were confused about differential roles and/or held stereotypical views. Some failed to disclose needs to services, received insufficient support or experienced unnecessary and inconvenient visits. Patients with few or no physical care needs were surprised to receive DN visits. Those receiving personal care from agency carers expressed dissatisfaction. Cancer patients and carers may benefit from post-discharge/ongoing assessment by DNs. However, effectiveness could be inhibited by limited disclosure caused by confusion, stereotyping, negative experiences and ideas that other patients have greater needs. Information might diminish these factors but, first, services need to clarify their roles. Organization and delivery of personal care services varies locally and DNs provide personal care during terminal illness. Community services should perform intra- and interservice clarification before publicizing differential roles to cancer patients and carers. This might facilitate disclosure of need to DNs. Patient and carer needs for information on service roles, and patients' preferred roles in self-care are under-researched.     

The economics of cancer care in the UK

Cancer care accounts for an increasing proportion of global spending on healthcare, driven by an increased incidence caused by ageing populations, greater frequency from better treatments, and changes in care that have made cancer a chronic, controllable illness. The cost of cancer care has three components: direct and easily determined clinical costs (ie, medical costs); extra financial requirement of living with disease for the patient and their family (ie, morbidity costs); and loss of income from the premature death (ie, mortality costs). Effective planning of cancer services needs detailed consideration of the economics of care delivery-an area of research that has so far been lacking outside the USA. Here, we review the literature and attempt to answer key questions on the economics of cancer care, including probable changes in disease burden over the next 20 years, changes in the way costs will be distributed between carers and delivery services, changing patterns of service delivery, and the direct contribution patients will make to treatment costs in terms of co-payments and escalating costs of comorbidity in elderly populations.     

Early integration of palliative care services with standard oncology care for patients with advanced cancer

Answer questions and earn CME/CNE Scientific advances in novel cancer therapeutics have led to remarkable changes in oncology practice and longer lives for patients diagnosed with incurable malignancies. However, the myriad options for treatment have established a culture of cancer care that has not been matched with a similar availability of efficacious supportive care interventions aimed at relieving debilitating symptoms due to progressive disease and treatment side effects. Accumulating data show that the introduction of palliative care services at the time of diagnosis of advanced cancer leads to meaningful improvement in the experiences of patients and family caregivers by emphasizing symptom management, quality of life, and treatment planning. In this review article, the rationale and evidence base for this model of early palliative care services integrated into standard oncology care are presented. In addition, the implications and limitations of the existing data to 1) elucidate the mechanisms by which early palliative care benefits patients and families; 2) guide the dissemination and application of this model in outpatient settings; and 3) inform health care policy regarding the delivery of high‐quality, cost‐effective, and comprehensive cancer care are discussed. CA Cancer J Clin 2013;63:349‐363. ^© 2013 American Cancer Society, Inc.     

Age‐related supportive care needs of women with gynaecological cancer: A qualitative exploration

Women with gynaecological cancer (GC) experience significant morbidity with associated needs for support, not all of which are currently met by the current system. Types and levels of unmet needs vary across age and the care continuum. This study aimed to identify the shared and unique supportive care needs of younger and older GC patients and survivors to inform improved supportive care. Nineteen younger and ten older women, 3 months to 5 years post a GC diagnosis, were purposively recruited during active treatment, and at early and extended survivorship. Audiotaped and transcribed semi‐structured interviews were thematically analysed to establish areas of needs. GC patients reported nine shared needs relating to support, isolation, uncertainty, information, asking questions, escape from illness, advocacy, loss and finding meaning. Younger patients reported unique needs related to the impact of treatment‐induced menopause. There is a need for a systematic screening process to identify women who require and want additional help, to ensure appropriate and timely assistance or referrals are provided. Identification of needs will allow health professionals to provide relevant and timely information and support services, resulting in improved quality of life for women affected by GC.     

Perspectives of health professionals on the psychosocial impact of an altered appearance among adolescents treated for cancer and how to improve appearance-related care

An altered appearance can impact the psychosocial well-being of adolescent cancer patients, yet patient reports imply a dearth of appearance-related support. Using a two-phase qualitatively driven mixed method design, 62 health professionals from a range of UK oncology care settings provided data relating to their views on the impact of appearance changes on adolescent patients (aged 12–18 years), of delivering appearance-related care, and their training needs. Integrated findings were divided into two main outcomes. The first comprises health professionals' perceptions of the psychosocial and behavioral impacts of appearance-related distress in their patients and their experiences of interventions that prevent or ameliorate appearance concern. The second illustrates personal barriers (among health professionals, adolescents, and parents) and organizational barriers that inhibit the delivery of appearance-related support, together with suggestions about how these may be overcome. The needs of patients are extensive and varied, but due to the barriers identified can be poorly addressed. Nonetheless, some practitioners are utilizing a variety of interventions supported by theory and/or evidence of their success in other clinical areas. Recommendations are made for the content, design, and coordination of interventions for adolescents and for the content of education programs to meet the training needs identified by participants.     

The health status and health service needs of primary caregivers of cancer survivors: a mixed methods approach

This study aimed to measure the health status and care needs of people who provide informal care to cancer survivors in the UK. Semi‐structured interviews were conducted with a purposive sample of 24 cancer professionals to identify the care needs of caregivers. In addition, we conducted a postal survey measuring the health and well‐being [36‐item short‐form health survey (SF‐36)] and health service utilisation of 98 primary caregivers of a random sample of cancer survivors, 2–20 years post‐treatment. Interviews indicated that caregivers' needs were largely unmet. In particular, there appeared to be a need in relation to statutory healthcare provision, information, psychological support and involvement in decision‐making. There were no significant differences between survivors and caregivers in terms of mental health scores; and caregivers performed better on physical health domains compared with cancer survivors. Compared with UK norms and norms for caregivers of other chronic conditions, cancer caregivers had substantially lower scores on each SF‐36 health domain. Cancer may impact negatively on an informal caregiver's health long after treatment has ended. Providing appropriate and cancer‐specific information may alleviate difficulties and improve health and well‐being. Specific concentration should be given to the development and delivery of information support for caregivers of post‐treatment cancer survivors.