Living experiences of patients with advanced cancer with low socioeconomic status: protocol for a systematic review of qualitative evidence.

INTRODUCTION: The number of patients with advanced cancer is rapidly increasing, and the disease burden among those with low socioeconomic status (SES) has accordingly become a global concern. Low SES can adversely impact patients with advanced cancer. The purpose of this systematic review is to shed light on the life experiences of patients with advanced cancer with low SES to help provide targeted and effective strategies to improve their quality of life. METHODS AND ANALYSIS: We will include the following English databases: Cochrane Library, Cumulative Index to Nursing and Allied Health Literature, PubMed, MEDLINE, Embase, Web of Science, Joanna Briggs Institute (JBI) Database of Systematic Reviews, PsycINFO and OpenGrey, and the following Chinese databases: China National Knowledge Infrastructure, VIP Database for Chinese Technical Periodicals and Wanfang Data Knowledge Service Platform. A comprehensive search of qualitative studies on the experiences of patients with advanced cancer with low SES will be conducted from the above databases, with no age limit. Quality assessments of the studies will be independently performed by two reviewers using the JBI Critical Assessment Checklist, and any disagreements will be resolved through a discussion with a third reviewer. Relevant data will be extracted using the JBI standardised data extraction tools. The JBI meta-aggregation tool will be used to compare, analyse and summarise the original results. The reliability and credibility of the overall quality of the studies included will be evaluated using the JBI ConQual approach. ETHICS AND DISSEMINATION: This study is based on existing public literature and therefore does not require a formal ethics review. The results of the study may be presented in peer-reviewed international journals and presented at scientific conferences. PROSPERO REGISTRATION NUMBER: CRD42021250423. © Author(s) (or their employer(s)) 2022. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.

There is an urgent need for qualitative evidence regarding the life experiences of patients with advanced cancer with low socioeconomic status (SES) to help formulate appropriate interventions.

This study is the first qualitative systematic review to focus on the living experiences of patients with advanced cancer with low SES.

This study will include a systematic review of empirical evidence based on qualitative research conducted across multiple regions and cultures that will contribute to the dissemination of care practices for patients with advanced cancer with low SES.

The findings of this qualitative systematic review are limited by the context and background of the included original studies.

Introduction

Cancer remains the leading cause of death worldwide, and an estimated 10 million cancer deaths occurred in 2020.1 The global burden of cancer-related diseases is also increasing.2 Patients with advanced cancer are those with metastatic or controlled but incurable cancer.3 Although novel treatment modalities and the quality of care strategies have improved the overall 5-year survival rate of patients with advanced cancer,4 5 no curative cancer modality has been developed.6 Patients with advanced cancer experience adverse health outcomes, and majority do not recover.7 Within the limited survival period of patients with advanced cancer, the long-term consequences of cancer and its treatment often result in higher symptom loads,8 9 including moderate to severe cancer pain,10 depression,11 malnutrition12 and cancer-related fatigue.13 These, in turn, result in a significantly decreased quality of life,14 with severely impaired overall physical, psychological, and social functions and a higher risk of suicidal intentions.15

Patients with advanced cancer with low socioeconomic status (SES), that is, those generally either with residence in a deprived regional status or with low income,16 face more complex problems.17 Despite their varying types of cancer, patients with advanced cancer with low SES have similar concerns and issues. They often experience delays in perceiving non-specific symptoms of certain cancers (eg, fatigue or unexplained weight loss) until the time of diagnosis.18 19 Further, active clinical treatment is often associated with higher out-of-pocket costs in these patients than their high SES counterparts.20–22 A systematic review by Iragorri et al 21 showed that patients with cancer residing in low-income areas spent 42% of their annual income on cancer-related out-of-pocket expenses. This was approximately 2.6 times higher than the out-of-pocket expense-to-annual income ratio for patients with cancer in high-income areas. Moreover, the debilitating effects of late illness often lead to unemployment for both patients and their caregivers,23 24 further lowering the total household income. In addition, the economic cost of advanced cancer treatment is only partially covered by the social security system.22

The negative impact of long-term and costly treatment and low income on the patients’ quality of life is often multidimensional.25 Some studies have shown patients’ higher drug non-compliance to save costs (eg, reducing drug use, delaying prescriptions, using alternative therapies) in patients with advanced cancer with low SES.26 27 Further, these patients are forced to interrupt or abandon treatment.28 29 Lower treatment compliance can have significantly negative health-related consequences, including increased hospitalisations30 and higher mortality rates.17 A large National Health Survey found that patients who reported having financial problems because of cancer care costs were not only more likely to report lower health conditions, but also had worse mental health status.31 Severe symptoms of anxiety and depression lead to poorer quality of life,32 33 which increases the need for palliative care.34

Despite these adverse effects of low SES, the care plan for patients with advanced cancer with low SES has not been clearly defined. Only a few quantitative studies have explored effective nursing strategies for patients with advanced cancer, including symptom management35 and psychosocial care.36 37 However, these methods often do not meet the daily care needs of patients with advanced cancer with low SES.38 For example, symptom management is continuous and dynamic, and regular medication use is better for symptom control. However, patients with advanced cancer with low SES often adjust or delay medication due to their limited financial resources.26 27 39 These patients also often lack access to adequate and continuous psychosocial care services because of socioeconomic restrictions.40 Some qualitative studies have found more life difficulties in patients with advanced cancer with low SES. Van Roij et al reported that patients in their study felt overwhelmed but were embarrassed when seeking financial support.25 These patients also often experience stronger feelings of social exclusion and isolation than their high SES counterparts.25 In addition, their strategies for accepting and managing behavioural changes under such economic hardship may be unique.41 For instance, the more effective strategies of pain management among these patients were found as the sensory experience of pain and the meaning of pain, rather than prescribed analgesics.39

Therefore, this qualitative review aims to shed light on the life experiences of patients with advanced cancer with low SES, in a detailed manner, including disease distress, barriers and strategies in coping with the disease distress. Ultimately, the synthesised qualitative evidence helps provide targeted and appropriate care strategies to improve patients’ quality of life.

Methods and analysis

This is a qualitative systematic review protocol that follows the Preferred Reporting Items for Systematic Reviews and Meta-analysis Protocols checklist to ensure that the research plan is robust (online supplemental material 1).

Inclusion criteria

Participants

We will review all studies that include patients with advanced cancer, without limitations on the country or type of cancer.

Phenomenon of interest

This review will include studies that describe the life experiences of patients with advanced cancer, including disease distress, barriers and strategies in detail.

Context

The context will consider the life experiences of patients with advanced cancer with low SES. According to literature review, most previous studies identified low income as a feature of low SES.16 17 19 Therefore, low income will be considered as low SES in this study. Also, due to the varying standards of low income in different locations, patients with advanced cancer who are identified as having a low-income economic status in the original research will be included in this study.

Types of studies

The review will consider qualitative studies, including, but not limited to, personal narratives, grounded theories, ethnographies and feminist research. Only English and Chinese literature will be included, and there will be no restrictions on the year of publication.

Patient and public involvement

No patient will be involved in the design, planning and conception of this study.

Search strategy

The search strategy aims to find both published and grey literature. An initial search will be conducted using the PubMed and Cumulative Index to Nursing and Allied Health Literature (CINAHL) databases. This will be followed by an analysis of MeSH (Medical Subject Headings) terminologies included in the title and abstract and index terminology terms used to describe the articles. A comprehensive search will also be performed, using the relevant MeSH terminology and index terminology terms, in the following databases: the Cochrane Library, CINAHL, PubMed, MEDLINE, Embase, Web of Science, Joanna Briggs Institute (JBI) Database of Systematic Reviews, PsycINFO, China National Knowledge Infrastructure, VIP Database for Chinese Technical Periodicals, Wanfang Data Knowledge Service Platform and OpenGrey. The complete search strategy for the customisations used in PubMed is presented in online supplemental material 2.

Study selection

All the identified studies will be collated and uploaded to EndNote V.X9 software; duplicate studies will be eliminated. Two independent reviewers (ZA and XM) will screen the titles and abstracts according to the inclusion criteria. Articles that do not meet the inclusion criteria will be excluded, and the reason for exclusion will be attached as supplemental material in the final systematic review report. To maintain the credibility of the screening process, all included studies will be screened according to a rigorous process, and any disagreements will be resolved through discussion with a third reviewer (HY).

Assessment of methodological quality

Quality assessments prior to inclusion in the review will be performed by two independent reviewers (ZA and XM) according to the 10-item checklist of the JBI Qualitative Assessment and Review Instrument for methodological validity.42 The checklist assesses different domains, including research methodology, philosophical foundation, data collection, analysis method and result validity (online supplemental material 3). All studies will be evaluated based on whether or not the study being evaluated fulfils the checklist item for each domain. Items in the checklist will be marked as 'yes' if the study fulfils the domain criteria, 'no' if it does not and 'unclear' if the study’s adherence to certain domain criteria cannot be conclusively proven. The result of the evaluation will be determined based on the number of domain items (of a total of 10) that the study fulfils, with a rating of ≤6 considered weak, 7–8 considered moderate and 9–10 considered high quality. Any disagreements will be resolved through a discussion with the third reviewer (HY) until a consensus is reached. For studies that are evaluated as moderate and above, data will be extracted and integrated for analysis.

Data collection

Two independent reviewers (ZA and XM) will collect qualitative data related to the research questions and objectives using the JBI qualitative assessment and review instrument from the JBI System for the Unified Management, Assessment and Review of Information.43 The extracted data will include details regarding the populations, contexts, methods, culture, geographical location, study methods and the phenomena of interest (online supplemental material 4). All information obtained will be grouped into tables.

Data synthesis

The collected data will be organised and synthesised using the JBI meta-aggregation method.44 Before integration, two independent reviewers (ZA and XM) will read the articles to understand the full text. They will then summarise the quality of the results and divide them into three levels: unequivocal, equivocal and unsupported. These results will then be further classified to arrive at a set of meaningful concepts that are consistent with those of the original manuscript. These similar categories are eventually integrated to produce a comprehensive set of findings that can improve the living experiences of patients with advanced cancer with low SES.

Assessing the accuracy of results

Ultimately, the accuracy of the findings will be evaluated based on the JBI ConQual approach,45 which evaluates the reliability and credibility of the findings. The confidence level of the final study results will be classified into four scales of high, moderate, low or very low (online supplemental material 5). The process will be completed by two independent reviewers (ZA and XM), and any disagreement will be resolved through a discussion. The entire protocol process is illustrated in figure 1.

Figure 1

PRISMA flow diagram of the study process. JBI, Joanna Briggs Institute; PRISMA, Preferred Reporting Items for Systematic Reviews and Meta-Analysis.

Reporting of protocol

The findings of the comprehensive review in this qualitative study will be reported in accordance with the Enhancing Transparency in Reporting the Synthesis of Qualitative Research46 guideline to ensure that the review and research is robust (online supplemental material 6).

Ethics and dissemination

This systematic review will identify and integrate the life experiences of patients with advanced cancer with low SES to understand the other issues and needs of such a vulnerable population, apart from financial barriers, to provide targeted care to improve patients' quality of life. The findings will be published in a peer-reviewed journal or presented at scientific conferences.