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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

Source:

JBI Evidence Synthesis

May 2014, Volume :12 Number 5 , page 54 - 65 [Free]

Authors

  1. Cooper, Joanne PhD, MA, BSc (Hons), DipN, RN (Adult)
  2. Bath-Hextall, Fiona PhD
  3. Cox, Karen PhD, BSc (Hons)
  4. Crosby, Vincent FRCP
  5. Parsons, Simon DM, FRCS (Gen Surg), BM, BS, BMedSCi(Hons)

Abstract

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.

 

Article Content

Inclusion criteria

Types of participants

This review will consider studies that include any participant involved in the delivery of palliative care to people diagnosed with palliative esophago-gastric cancer in a hospital, home or community setting. International evidence will be included, but only that written in the English language. Health care practitioner will include nursing, medical and allied health professionals, including registered and non-registered health care practitioners (e.g. health care support workers). The review will also consider studies of experiences and perceptions of patients diagnosed with palliative (non-curative) esophago-gastric cancer aged 18 years or older.

 

Studies of experiences and perceptions of adult participants with potentially curative esophago-gastric cancer or of those adults with curative treatment intent for esophago-gastric cancer will be excluded.

 

Phenomena of interest

This review will consider studies that investigate the experience and perceptions of people diagnosed with non-curative palliative esophago-gastric cancer and the staff working with these people. By considering the experiences and perceptions of these people, information related to what 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 may become clear.

 

Additionally, what the patients, nursing and medical staff believe influences achievement of the best quality of life for patients diagnosed with non-curative palliative esophago-gastric cancer may be found.

 

Types of studies

This review will consider studies that focus on qualitative data including, but not limited to, designs such as phenomenology, grounded theory, ethnography, action research and feminist research.

 

Search strategy

The search strategy aims to find both published and unpublished studies. A three-step search strategy will be utilized in this review. An initial limited search of MEDLINE and CINAHL will be undertaken followed by analysis of the text words contained in the title and abstract and of the index terms used to describe the article. A second search using all identified keywords and index terms will then be undertaken across all included databases. Thirdly, the reference lists of all identified reports and articles will be searched for additional studies.

 

Studies published in any language(s) will be considered for inclusion in this review. Foreign language abstracts will be initially transcribed for the application to the inclusion and exclusion criteria and where necessary the methods, results and discussion sections will be transcribed for inclusion in the review.

 

Studies published from the year 2000 onwards to coincide with the publication date of the NHS Cancer Plan7 will be considered for inclusion in this review.

 

The databases to be searched include:

 

* MEDLINE

 

* CINAHL

 

* EMBASE

 

* AMED

 

* PsycINFO

 

* Web of Science

 

* PsycARTICLES

 

* Pubmed

 

* NICE (UK)

 

* ASSIA

 

* British Nursing Index (via ASSIA)

 

* Mednar

 

 

The search for unpublished studies will include:

 

* PAIS International - grey literature / index to thesis

 

* The Christie Research Publication Repository

 

* Medical Research Council online MRC Research Portfolio

 

* Health Services Research Projects in Progress database (Via National Information Centre on Health Services Research and Health Care Technology)

 

 

Initial keywords to be used will be:

 

* Esophago-gastric cancer/s (and its variants: Esophago-gastric tumor/s, Esophago-gastric neoplasm/s)

 

* Gastro-esophageal junction cancer/s (and its variants Gastro-esophageal junction tumor/s, Gastro-esophageal junction neoplasm/s)

 

* Palliative care (and its variants: Phase of palliation, Palliative phase/s, Palliative approach/s)

 

* Palliative treatment intent (and its variants: Palliative treatment/s, Palliative therapy/ies, Palliative intervention/s, Symptom palliation, Palliative chemotherapy, Palliative radiotherapy, Palliative surgery, Palliative endoscopy, Palliative stent/s, Supportive palliative care, Supportive care)

 

* No active treatment/s (and its variants: Non curative treatment/s, Best supportive care, Ease burdensome symptoms).

 

 

See Appendix I for full list of search terms

 

Assessment of methodological quality

Papers selected for retrieval will be assessed by two independent reviewers for methodological validity prior to inclusion in the review using standardized critical appraisal instruments from the Joanna Briggs Institute Qualitative Assessment and Review Instrument (JBI-QARI) (Appendix II). Any disagreements that arise between the reviewers will be resolved through discussion or with a third reviewer.

 

Data collection

Data will be extracted from papers included in the review using the standardized data extraction tool from JBI-QARI (Appendix III). The data extracted will include specific details about the phenomena of interest, populations, study methods and outcomes of significance to the review question and specific objectives.

 

Data synthesis

Qualitative research findings will, where possible, be pooled using JBI-QARI. This will involve the aggregation or synthesis of findings to generate a set of statements that represent that aggregation, through assembling the findings rated according to their quality and categorizing these findings on the basis of similarity in meaning. These categories are then subjected to a meta-synthesis in order to produce a single comprehensive set of synthesized findings that can be used as a basis for evidence-based practice. Where textual pooling is not possible, the findings will be presented in narrative form.

 

Conflicts of interest

The authors have no conflict of interest to report.

 

Acknowledgements

Funding provided by Nottingham University Hospitals Charity, Research Pump Priming Fund.

 

Mrs Cathy Van-Baalen - Upper GI Nurse Specialist, Nottingham University Hospitals

 

Mrs Vickie Walker - Clinical Researcher (October 2012 to April 2013), Nottingham University Hospitals

 

References

 

1. Cancer Research UK Statistical Information Team. UK Oesophageal Cancer Statistics 2010a. Available from: http://info.cancerresearchuk.org/cancerstats/types/oesophagus/?a=5441. [Context Link]

 

2. Cancer Research UK Statistical Information Team. UK Stomach Cancer Mortality Statistics 2010b. Available from: http://info.cancerresearchuk.org/cancerstats/types/stomach/mortality. [Context Link]

 

3. Cook MC, WH; Devesa,SS. Oesophageal cancer incidence in the United States by race, sex and histology type, 1977 - 2005. British Journal of Cancer. 2009;101:855 - 9. [Context Link]

 

4. Bollschweiler EW, E; Gutschow, C; Holscher, AH. Demographic variations in the rising incidence of esophageal adenocarcinoma in white males. Cancer. 2001;92:549-55. [Context Link]

 

5. NHS Information Centre. National Oesophago-gastric Cancer Audit. Leeds2010. [Context Link]

 

6. World Health Organisation. Better Palliative Care for Older People. World Health Organisation, 2004. [Context Link]

 

7. Department of Health. The NHS Cancer Plan: A plan for investment, a plan for reform. In: Health Do, editor. London: The Stationery Office; 2000. [Context Link]

 

8. Department of Health. Guidance on Commissioning Cancer Services: Improving Outcomes in Upper Gastro-Intestinal Cancers: The Manual. In: Health Do, editor. London2001. [Context Link]

 

9. National Institute for Clinical Excellence. Guidance on Cancer Services Improving Supportive and Palliative Care for Adults with Cancer The Manual. London: National Institute for Clinical Excellence (NICE), 2004. [Context Link]

 

10. Health Do. National Cancer Patient Experience Survey 2011/12 - National Report. In: Health Do, editor. London: DH; 2012. [Context Link]

 

11. Excellence NIfC. Guidance on Cancer Services Improving Supportive and Palliative Care for Adults with Cancer - Research Evidence. In: Health Do, editor. London: Department of Health; 2004. [Context Link]

Appendix I: Search strategy

 

For use with following databases: OVID / AMED / BNI / EMBASE / MEDLINE / PsycInfo

 

1 Population:

 

("Oesophago-gastric cancer*" or "Oesophago-gastric tumour*" or "Oesophago-gastric neoplasm*" or "Oesophageal cancer*" or "Oesophageal tumour*" or "Oesophageal neoplasm*" or "Gastro-oesophageal junction cancer*" or "Gastro-oesophageal junction tumour*" or "Gastro-oesophageal junction neoplasm*" or "Gastric cancer*" or "Gastric tumour*" or "Gastric neoplasm*" or "Esophago-gastric cancer*" or "Esophago-gastric tumour*" or "Esophago-gastric neoplasm*" or "Esophageal cancer*" or "Esophageal tumour*" or "Esophageal neoplasm*" or "Gastro-esophageal junction cancer*" or "Gastro-esophageal junction tumour*" or "Gastro-esophageal junction neoplasm*" or "Stomach cancer*" or "Stomach tumour*" or "Stomach neoplasm*" or "Gastrointestinal cancer*" or "Gastrointestinal tumour*" or "Gastrointestinal neoplasm*"). mp. [mp=protocol supplementary concept, rare disease supplementary concept, title, original title, abstract, name of substance word, subject heading word, unique identifier]

 

"Oesophago-gastric cancer*" or "Oesophago-gastric tumour*" or "Oesophago-gastric neoplasm*" or "Oesophageal cancer*" or "Oesophageal tumour*" or "Oesophageal neoplasm*" or "Gastro-oesophageal junction cancer*" or "Gastro-oesophageal junction tumour*" or "Gastro-oesophageal junction neoplasm*" or "Gastric cancer*" or "Gastric tumour*" or "Gastric neoplasm*" or "Esophago-gastric cancer*" or "Esophago-gastric tumour*" or "Esophago-gastric neoplasm*" or "Esophageal cancer*" or "Esophageal tumour*" or "Esophageal neoplasm*" or "Gastro-esophageal junction cancer*" or "Gastro-esophageal junction tumour*" or "Gastro-esophageal junction neoplasm*" or "Stomach cancer*" or "Stomach tumour*" or "Stomach neoplasm*" or "Gastrointestinal cancer*" or "Gastrointestinal tumour*" or "Gastrointestinal neoplasm*"

 

And

 

2 Intervention and Processes search combined

 

("Palliative care" or "Phase of palliation" or "Palliative phase*" or "Palliative approach#" or "Palliative treatment intent*" or "Palliative treat*" or "Palliative therap#" or "Palliative intervention*" or "Symptom palliation*" or "Palliative chemotherapy" or "Palliative radiotherapy" or "Palliative surgery" or "Palliative endoscopy" or "Palliative stent#" or "Supportive palliative care" or "supportive care" or "No active treatment*" or "Non curative treatment*" or "Best supportive care" or "Ease burdensome symptom*" or "Hospice" or "Patient centred care" or "Patient centered care" or "Survivorship" or "Comfort care" or "Terminal care" or "Holistic care" or "End-of-life care" or "End of life care" or "Liverpool care pathway" or "Gold standard framework" or "Model* of care" or "Model* of practice" or "Mode* of delivery" or "Shared decision making" or "Decision making" or "Patient management" or "Integrated care pathway*" or "Integrated care model*" or "Clinical pathway*" or "Care pathway*" or "Improved support" or "Cancer journey" or "Agreed protocol*" or "Aftercare" or "Self management" or "Self-management" or "Day care" or "Acute care" or "Patient care" or "Primary care" or "Service delivery" or "Service model*" or "Organisation of care" or "Organization of care").mp. [mp=protocol supplementary concept, rare disease supplementary concept, title, original title, abstract, name of substance word, subject heading word, unique identifier]

 

Amendment for use with Cinahl database:

 

"Palliative care" or "Phase of palliation" or "Palliative phase*" or "Palliative approach" or "Palliative approaches" or "Palliative treatment intent" or "Palliative treatment*" or "Palliative treatments" or "Palliative therapy" or "Palliative therapies" or "Palliative intervention" or "Palliative interventions" or "Symptom palliation" or "Palliative chemotherapy" or "Palliative radiotherapy" or "Palliative surgery" or "Palliative endoscopy" or "Palliative stent" or "Palliative stents" or "Supportive palliative care" or "supportive care" or "No active treatment" or "Non curative treatment" or "Best supportive care" or "Ease burdensome symptoms" [Context Link]

Appendix I: Appraisal instruments

 

QARI appraisal instrument[Context Link]

Appendix III: Data extraction instruments

 

QARI data extraction instrument[Context Link]

 

Keywords: Cancer; Experience and perceptions; Non-curative; Esophago-gastric; Palliative

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