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Patient, nursing and medical staff experiences and perceptions of the care of people diagnosed with non‐curative palliative esophago‐gastric cancer: a systematic review protocol of the qualitative evidence

Review question/objective The overall objective of this systematic review is to synthesize the best available evidence on the experiences and perceptions of patients, nursing and medical staff with regard to the care of people diagnosed with non‐curative palliative esophago‐gastric cancer. In meeting this objective, this review will consider the following questions: 1. What are the expressed experiences and perceptions of patients, nursing and medical staff with regard to the care of people diagnosed with non‐curative palliative esophago‐gastric cancer? 2. What do patients, nursing and medical staff believe are the most appropriate and acceptable ways to deliver care to people diagnosed with non‐curative palliative esophago‐gastric cancer? 3. What do patients, nursing and medical staff believe influences achievement of the best quality of life for patients diagnosed with non‐curative palliative esophago‐gastric cancer? Background Although esophago‐gastric (EG) cancer is the fifth most common malignancy and fourth most common cause of cancer death in the United Kingdom (UK), affecting approximately 13,500 people each year as a specific area of disease,1‐2 it has received less attention than other tumor sites (e.g. breast, lung and colorectal). The incidence of EG cancer is increasing; specifically adenocarcinoma of the distal esophagus and gastro‐esophageal junction,3 and the UK reports the highest incidence worldwide.4 Key risk factors include tobacco smoking and high alcohol consumption (squamous cell carcinoma) and gastro‐esophageal reflux disease, Barrett's esophagus and obesity (adenocarcinoma). However, due to the fast paced and progressive nature of the disease, it has a devastating impact on a patient's quality of life. These risk factors are critical health issues affecting the UK population, in particular the alarming growth in alcohol consumption and obesity. Ensuring an effective and acceptable service for patients with EG cancer is therefore paramount. The chance of survival at five years is good for patients who are diagnosed with localized EG cancer; however this represents only 10‐15% of sufferers. (5) Treatment with palliative intent is the model provided for the majority of patients, including palliative oncology, palliative surgery and best supportive care. Palliative care has also been identified as one of the worldwide public health priorities due to the aging population.6 The NHS Cancer Plan sets out to improve cancer treatment within the National Health Service.7 The implementation of this ambition for those diagnosed with EG cancer was to be supported by the publication of Improving Outcomes Guidance in Upper Gastro‐Intestinal Cancer8 and Improving Supportive and Palliative Care for Adults with Cancer.9 Overall, there remains a lack of empirical evidence into the most effective service model(s) supporting palliative care for patients diagnosed with palliative EG cancer; anecdotal evidence identifies inconsistent provision of palliative care support between services within and across primary and secondary care boundaries. For example, while a significant proportion of patients will receive palliative stent insertion, local experience suggests a need for greater clarity and coordination between services regarding follow‐up and on‐going support of the patient and family/carers in order to reflect the ambitions of best practice in cancer care.10 Despite the existence of National guidance, uncertainty still remains around the most effective models of care for palliative care services. "In particular, research is needed on the impact of comparisons between different ways of providing services, including careful measurement of outcomes important to patients and carers."9(p32) This view has been echoed more recently, with regard to insufficient understanding of the experiences of patients and what they deem to be relevant individual and service‐level outcome measures, which have been raised as essential in providing high quality palliative cancer care.5 In addition, the National Institute for Clinical Excellence (NICE) believes there is a need "to involve users in service planning and to orientate services around the issues faced by patients and families."9(p168) Palliative care has been defined as: The active holistic care of patients with advanced, progressive illness. Management of pain and other symptoms and provision of psychological, social and spiritual support is paramount. The goal of palliative care is the achievement of the best quality of life for patients and their families and many aspects of palliative care are also applicable earlier in the course of the illness in conjunction with other treatments.9(p20) Informed by the findings of a systematic review of studies aimed at improving supportive and palliative care for adults with cancer,11 NICE reported that research at that time focused on three main areas: "the need for such care, its importance to those affected by cancer (and to society), and effective solutions."9(p168) The review found a wealth of evidence supporting the need for good supportive and palliative care among patients with cancer. However, although palliative and terminal care was among the top 15 health care priorities identified by members of the general public, the research evidence on effective solutions to meet these needs was limited and requires further robust systematic investigation. NICE concluded that future research should aim to identify effective solutions, rather than reassessing need, including investigations into models that coordinate care built on a full understanding of the experiences and expectations of those affected by cancer.9(p171) Therefore, the authors believe that a systematic review of the qualitative evidence is required in relation to the care of patients with esophago‐gastric cancer, in order to inform the planning, evaluation and delivery of services for this population group. This may also help to inform service provision for other people affected by cancer through sharing experiences and ways of managing the impact of cancer on their lives.9 It is in this context that the requirement to undertake a systematic review of patient, nursing and medical staff experiences and perceptions of the care of people diagnosed with non‐curative palliative esophago‐gastric cancer has become obvious. The author has examined the Cochrane Library, JBI Database of Systematic Reviews and Implementation Reports, CINAHL and other relevant databases and not found any current or planned reviews on the same topic.