Psychological and educational support for cancer patients who return to work: A scoping review

Abstract

BACKGROUND:

Many patients with cancer experience challenges when they return to work (RTW) following cancer diagnosis and treatment. Psycho-educational support is important to facilitate the RTW process.

OBJECTIVE:

This scoping review examined published reports on psycho-educational support for patients with cancer who RTW.

METHODS:

We followed the preferred reported items for systematic reviews and meta-analyses statement and the framework of Arksey and O’Malley. We searched the Cochrane Central Register of Controlled Trials database, PubMed, CINAHL (EBSCO), and ICHUSHI and performed manual searches.

RESULTS:

We retrieved 1,586 articles and retained 48 for analysis (published January 2000 to December 2020). Physicians, occupational physicians, nurses, social workers, and psychologists provide considerable support in hospitals. Delivery modes included individual, face-to-face, and workbook. Psychological support included emotional, stress coping, counseling, and knowledge. Educational support included information or advice provision, communication skills, problem discussion, and work planning. Employment status was typically the primary outcome. We included 50 measurement scales across quality of life, cognitive functioning and illness, self-efficacy, psychological distress, and fatigue.

CONCLUSION:

This review elucidated psycho-educational support for patients with cancer who RTW, and measurement tools for related effects. Based on the characteristics of the psycho-educational support revealed in this study, future studies should examine the development, intervention, and implementation of support programs for patients’ RTW.

Keywords

Cancer return to work psycho-educational support quality of life scoping review

1 Introduction

Cancer incidence is expected to reach 19.3 million people worldwide by 2025 [1]. Over the past few years, cancer screening and treatment technologies have advanced, and survival rates of patients with cancer have increased rapidly in developed countries. In Japan, about one-third of all patients diagnosed with cancer are aged 20–65 years [2]. Many patients resume their daily activities, including returning to work. On account of the increase in the number of young patients with cancer and the rising retirement age, the number of patients with cancer who continue to work or return to work (RTW) after receiving treatment is predicted to increase in the future [3].

It is important for patients with cancer to RTW because working is associated with a high quality of life (QOL) and provides income and personal benefits [4 –6]. Furthermore, as working-generation patients with cancer are an important part of society and businesses [7, 8], it is vital from a social perspective that patients RTW. However, cancer and cancer treatment have long-term negative physical or psychological impacts on many patients [9, 10], which makes it difficult for them to RTW. The presence of metastases, emotional distress, symptom severity, postoperative complications, stoma, adjuvant treatment, type of treatment, and finances are factors that adversely affect patients’ RTW [11, 12]. In addition, work environment factors such as physical work, lack of support, and stigma adversely affect patients’ RTW [13 –16]. Similarly, in Japan, many patients are forced to leave their jobs because of the physical impact that a cancer diagnosis or cancer treatment can have [17]. There are also cases in which patients choose to leave their jobs volitionally because they do not have the confidence to continue working or do not want to disrupt the workplace atmosphere [17].

Therefore, it is important to provide employed patients with programs to support the RTW process. A previous study reported on the usefulness of multidisciplinary interventions that combine various types of support to help patients RTW [18]. Psychological and educational support have a positive impact on patients’ QOL [19, 20]. Consequently, we surmised that psycho-educational support is imperative in developing a support program for patients with cancer to RTW. The purpose of this review was to provide an overview of published work on the psychological and educational support that addresses cancer survivors’ RTW.

2 Methods

A scoping review was conducted to provide an overview of psycho-educational support articles about patients’ RTW. A scoping review is a pooling of data from research that has been conducted, rather than a quality assessment or critical appraisal. It uses a five-step process: (1) identify the research question; (2) identify relevant studies; (3) select studies; (4) chart the data and major issues; and (5) collate, summarize, and report the results. An overview of psychological and educational support will be valuable in the process of developing support programs for patients’ ability to RTW. We used the method developed by Arksey and O’Malley [21] and conducted the review in accordance with the PRISMA extension for Scoping Reviews (PRISMA-ScR) reporting guidelines [22]. A review protocol was not published.

2.1 Step 1: Identify the research question

The first stage of the scoping review identified the key research questions for the review:

What psycho-educational support has been provided to help patients’ RTW?

How has the effect of psycho-educational support been measured?

2.2 Step 2: Identify relevant studies

We systematically searched all available articles published between January 1 and December 31, 2020, using the following electronic databases: the Cochrane Central Register of Controlled Trials (CENTRAL) in the Cochrane Library, PubMed, and CINAHL (EBSCO). ICHUSHI (Japan Medical Abstracts Society), the largest database of medical articles in Japan, was also searched for articles published in Japanese using search words translated into Japanese. This review included this database for broader insight. The following keywords were used for the search: “cancer” and “return to work” or “job loss” or “unemployment” or “sick leave” and “nursing” or “education” or “educational” or “psychology” or “psychological” or “psychosocial” or “consultation.” In addition, we performed manual searches of the reference lists of all identified articles. Supplementary Table 1 provides the detailed searchstrategy.

2.3 Step 3: Select studies

A scoping review was conducted according to the PRISMA guidelines. The process of study selection is shown in the PRISMA flowchart in Fig. 1. The following criteria were used for inclusion: (1) studies on psycho-educational support at work for cancer as a primary theme or focus, (2) studies with a focus on adult cancer survivors, and (3) studies published in English or Japanese. Exclusion criteria were: (1) studies on non-cancer diseases; and (2) studies designed as a review (systematic review/meta-analysis), response letter, or expert opinion. We exported citations from initial database searches into EndNote X8 software. Search results were combined, and duplicates were removed. The extracted articles were checked for titles and abstracts according to the selection criteria. Following this step, the full text of the remaining articles was checked against the selection criteria. Articles that did not match the selection criteria were excluded. The process of literature extraction was conducted independently by three authors according to the search strategy. Disagreements were resolved through discussion by reaching a consensus. The percentage agreement was 90.3% (84/93) between the reviewers.

Fig. 1

PRISMA flow diagram.

2.4 Step 4: Chart the data and major issues

Data for all included articles were entered into a Microsoft Excel spreadshe by three independent authors (BLINDED FOR REVIEW). Data were collected on the following: (1) author(s); (2) year of publication; (3) country; (4) study design; (5) study population (type of cancer and sample size, if applicable); (6) intervention or support program and comparator, if applicable; (7) duration of the intervention, if applicable; and (8) outcome measures. We also extracted specific details about the support intervention or support program on components, including (1) setting, (2) mode of delivery (group, individual, face-to-face, and telephone), (3) provider of the support, and (4) components.

2.5 Step 5: Collate, summarize, and report the results

The authors compared and discussed the organized data to group, summarize, and report the results. The data were summarized in a spreadshe and imported into Microsoft Excel for validating and coding. Descriptive statistics were calculated to summarize the data. Frequencies and percentages were used to describe the nominal data.

3 Results

A total of 1,586 scientific articles were retrieved. After removing the duplicate articles, a review of 1,232 article titles and abstracts resulted in 93 articles being eligible for full-text review, and 48 articles (e.g., [23 –70] fulfilled the selection criteria; Supplementary Table 2).

3.1 Summary of study characteristics

Concerning year of publication, two articles were written between 2000 and 2005, five articles were written between 2006 and 2010, 20 articles were written between 2011 and 2015, and 21 articles were written between 2016 and 2020 (Fig. 2).

Fig. 2

Year of publication. RCT, randomized controlled trial.

These articles were from 11 different countries, including the Netherlands (n = 16) [39 , 67], the UK (n = 9) [23 , 57], Japan (n = 5) [58 –62], Germany (n = 4) [24 , 66], USA (n = 4) [35–37 , 41], Canada (n = 2) [29, 30], Denmark (n = 2) [34, 55], Sweden (n = 2) [28, 52], Australia (n = 2) [43, 70], Belgium (n = 1) [38], and South Korea (n = 1) [69]. The types of articles included 16 qualitative studies [26 , 65–67], 11 randomized controlled trials (RCTs) [23 , 68], 11 protocol studies [31–34 , 70], 5 cross-sectional studies [28 , 62], 3 longitudinal studies [25 , 53], 1 non-randomized controlled study [49], and 1 case study [46]. Types of cancer included in the articles were breast (n = 21), gynecological (n = 14), colorectal (n = 14), hematologic (n = 8), prostate (n = 7), bladder (n = 6), Hodgkin’s lymphoma (n = 6), bone and soft tissue (n = 5), non-Hodgkin’s lymphoma (n = 5), lung (n = 4), stomach (n = 4), head and neck (n = 3), kidney (n = 3), skin (n = 3), male genital organs (n = 3), pancreatic (n = 3), brain (n = 2), esophagus (n = 2), liver (n = 2), gallbladder (n = 2), biliary tract (n = 1), and appendix (n = 1).

Aside from the 11 protocol studies, 30 articles concerned patients with cancer with a total sample size of 6,087 patients (range: 1–1,876). Patients’ ages ranged from 25 to 75 years. The populations of the other 14 articles were 152 occupational physicians, 67 nurses, 13 vocational service providers, 12 managers, eight oncologists, eight employer representatives, five social workers, nine employee assistance program professionals or psychologists, three healthcare providers, one personnel management officer, 369 small- and medium-sized enterprises, 45 hospitals, 28 occupational health institutions, and 17 public employment security offices.

3.2 Psycho-educational support content

We excluded 12 articles that were based on a single study (e.g., protocol papers, pilot studies, or process evaluations from the same research); they were excluded because the content of the psycho-educational support was the same. Therefore, 36 studies based on 48 articles were included in the analysis of psycho-educational support content. Support was provided in different settings, such as hospitals (n = 13), workplaces (n = 4), homes (n = 2), accommodation facilities (n = 2), rehabilitation centers (n = 1), the life insurance sector (n = 1), and agency offices (n = 1). For 14 articles, support was supplied in an unknown setting.

The modes of delivery included individual (n = 21), face-to-face (n = 8), workbook (n = 4), group (n = 3), exercise (n = 3), leafl(n = 3), telephone (n = 3), DVD (n = 3), stay (n = 2), letter (n = 1), online (n = 1), and referral (n = 1). In addition, the mode of support delivery was unknown in 14 articles.

This support was delivered by physicians (n = 9), occupational physicians (n = 8), nurses (n = 8), social workers (n = 8), psychologists (n = 8), occupational health nurses (n = 5), coworkers or managers (n = 4), physiotherapist/occupational therapists (n = 3), nutritionists (n = 2), job consultants (n = 3), researchers (n = 2), and others (n = 3). In 12 studies, support was provided by a healthcare team consisting of staff of two or more occupations.

The types of psychological support included emotional support (n = 11), stress coping (n = 7), counseling (n = 6), providing psychological knowledge (n = 3), behavior therapy (n = 2), mindfulness (n = 1), relaxation (n = 1), liberating dance (n = 1), and qi-gong (n = 1).

The types of educational support included providing information or advice (n = 31), communication skills (e.g., how to communicate with occupational physicians, and employers; n = 14), discussion of problems and difficulties (n = 14), work planning (n = 14), referral of experts (e.g., hospital services, psychology, and exercise physiology; n = 5), work re-training (n = 2), coaching (n = 2), and functional training (n = 1).

Six articles combined psycho-educational support and other elements, including those that combined exercise and counseling (n = 4) or exercise and behavior therapy (n = 1), and one article that combined exchange of information for communication between professions and educational support (communication skills, discussion of problems and difficulties, work planning, and providing information or advice). Thirteen articles assessed the impact of cancer and work problems as one of the elements of the support program.

3.3 Measurement tools for psycho-educational support

As with the content review, we excluded 12 articles that were based on a single study; they were excluded because the measurement tools used to examine psycho-educational support were the same. In addition, all studies that did not provide a description of the outcome measure were excluded from this analysis. This analysis of the outcome measurement tools for psycho-educational support included 21 studies based on 48 articles. Details regarding the tools utilized to measure psycho-educational support are shown in Supplementary Table 3.

Employment status was reported as an outcome by most studies [23–25 , 68]. In addition, 50 scales from measurement tools used in the studies were included in the review: QOL (12 scales), cognitive functioning and illness (six scales), self-efficacy (five scales), psychological distress (four scales), fatigue (four scales), coping (three scales), satisfaction (three scales), physical workload (two scales), sleep (two scales), confidence in own self-management skills (two scales), work ability (one scale), work functioning (one scale), importance of work (two scales), knowledge (two scales), and social support (one scale). The reviewed studies examined the following measures: QOL (15 studies) [23–25 , 69], psychological distress (10 studies) [23 , 68], fatigue (9 studies) [25 , 69], self-efficacy (7 studies) [25 , 63], work ability (7 studies) [23 , 68], cognitive functioning (6 studies) [23 , 68], work functioning (5 studies) [25 , 63], physical workload (5 studies) [31 , 63], importance of work (3 studies) [25 , 68], coping (4 studies) [39 , 69], confidence in own self-management skills (3 studies) [31 , 39], sleep (2 studies) [39, 53], satisfaction (2 studies) [23, 64], knowledge (1 study) [36], and social support (1 study) [40]. Thirty-seven scales had verified reliability and validity.

4 Discussion

All studies included in this review were conducted in developed countries, which we believe is one of the reasons that advanced cancer medication and treatment are available in these countries. The rise in patient survival rates because of the advancement of cancer medication has increased the possibility of patients continuing to work while receiving cancer treatment. However, many patients find it difficult to continue working or RTW because of physical symptoms from the effects of cancer treatments or a decline in work ability [9, 14]. Problems related to employment and support needs are apparent, which has made support for patients who RTW important in developed countries. This has led to the advancement of research on support for patients with cancer who RTW, which is shown by a comparison of publication years: there were seven relevant articles from 2000 to 2010 and 41 articles between 2011 and 2020. Furthermore, while there were three RCTs and five protocol studies from 2011 to 2015, while there were five RCTs and five protocol studies from 2016 to 2020. This indicates the increasing interest over the past 10 years in research on psycho-educational support for patients with cancer who RTW, and we believe that it will continue to be an important field of research in future.

Regarding what constitutes psycho-educational support, reports on support provided individually and through face-to-face interaction accounted for more than 80% of reports after excluding papers that did not report on the mode of delivery (not reported). Therefore, it is conceivable that problems associated with RTW require support that is strongly individualistic and tailor-made. Studies have suggested that problems associated with RTW vary depending on patients’ situation, such as diverse support needs, based on the stage of treatment [17], and on factors such as metastases, the need for a stoma, symptom severity, and type of treatment, all of which are predictive of how difficult it would be for a patient to RTW [11, 12]. A crucial barrier to patients who RTW is the existence of stigma regarding cancer [16]. Therefore, individual or face-to-face interactions should be the basis for the modes of delivery of psycho-educational support.

Regarding setting, most studies provided or planned psycho-educational support in a hospital. In descending order, the most common care providers were physicians, nurses, and psychologists, which suggests that healthcare professionals involved in cancer treatments play an important role in supporting patients who RTW. As healthcare professionals involved in cancer treatments begin engaging with patients from the moment of diagnosis, they are capable of screening patients by considering their circumstances and continuously managing patients’ physical symptoms and treatments. Consequently, providing support in hospitals allows for the screening of not only extroverted patients who can seek support themselves but also more latent patients who are not capable of doing so. In addition, patients may quit their job immediately after receiving a cancer diagnosis for various reasons, including concerns over disrupting the workplace and not having a clear outlook about the future [17]. Therefore, it is prudent to use hospitals as a setting to provide psycho-educational support. In about one-third of the studies, psycho-educational support was provided by a healthcare team consisting of members from two or more occupations. A study reported that discussions about work between patients and a healthcare team led to the prolongation of working for patients [42]. Since there are multiple aspects to problems associated with work, such as economic, physical, and mental aspects, as well as the work itself, it may be effective for healthcare teams to cooperate to provide patient support.

The most common psychological support component was the emotional component. Most emotional components were related to RTW and were provided by doctors, nurses, psychologists, employers, and colleagues (e.g., discussing emotional aspects in RTW). Emotional components are important predictors that affect RTW [11]; therefore, emotional support is vital. Other types of support included counseling, stress coping, and behavior therapy, which included elements of self-management and encouraged patients with cancer to solve their problems independently. Behavioral control and a sense of self-efficacy about work are factors that predict the shortening of time before they RTW [71], which makes these forms of support important.

Most educational support focused on providing information or advice, communication skills, discussion of problems and difficulties, and work planning. Uncertain communication, lack of support, and high levels of physical and psychological demands in the workplace interfere with patients’ ability to continue to work [13, 72]. Consequently, it is important for patients with cancer to communicate with people in their workplace when they RTW. In addition, discussion of problems and difficulties is an important element of support, as it may help patients identify problems they encounter when they RTW. Furthermore, work planning according to patients’ individuality is a key form of support, as it helps patients imagine a specific RTW scenario. Many forms of psycho-educational support contained a self-management perspective, and many studies focused on individual ability. In the future, in addition to these forms of support, it may be necessary to focus on the formation of a patient community and establish roles to enhance patient empowerment.

Regarding the measurement and outcome of psycho-educational support, in several of the articles analyzed, work status was used to measure the main outcome. Employment status is an objective outcome and an evaluation index with the least risk of bias in outcome measurement. Consequently, it is an important element for measuring the effect of psycho-educational support for patients with cancer who RTW. Thus, previous studies have used employment status as the primary outcome to measure the effectiveness of RTW for patients. However, that was insufficient to determine whether RTW was truly successful; true RTW depends on individuals’ perceptions and patients’ situations. Therefore, in addition to employment status, future researchers should use outcome measures that reflect patients’ perspectives, such as the Successful RTW Questionnaire for Cancer Survivors developed by Greidanus and colleagues [73].

The outcome of QOL was measured in around 70% of the articles, and psychological distress was measured in half of the articles. Problems associated with work are correlated with low levels of QOL and depressive symptoms [5 , 74]. As such, it is important to measure QOL and psychological distress in addition to measuring work status. Aside from this, nearly half of the articles used a fatigue scale. As the extent of fatigue plays an important role in one’s work abilities, it is conceivable that the assessment of fatigue level is an important element when considering how to support patients’ RTW.

Apart from measuring work outcomes solely as objective outcome measures, recent literature shows that it is also important to measure it from cancer survivors’ perspective [73, 75].

4.1 Limitations

This review provided an overview of psycho-educational support for RTW among patients with cancer. However, as we have not evaluated the effects of the intervention of the psycho-educational support types we identified, further studies are needed. In addition, this review did not consider the differences in the social security systems of each country; further consideration is needed if the methods of psycho-educational support discussed in the review are to be applied in clinical practice or research. Furthermore, most of the articles reviewed did not include information regarding the duration or severity of the cancer. However, since it is possible that support for patients may differ based on the duration and severity of the cancer, these factors should be examined in future studies. Although we decided on a methodology for a literature search through discussions held between researchers, there were no literature search experts (e.g., librarians) involved in the discussion; thus, the search accuracy may have been limited.

5 Conclusion

This scoping review examined aspects of psycho-educational support provided for RTW among patients with cancer. Support was most often provided individually and through face-to-face interactions. In addition, most studies provided or planned psycho-educational support in a hospital. Most educational support focused on providing information or advice, communication skills, discussion of problems and difficulties, and work planning. Among the psychological support components, the most common support acted directly on the emotional component. Other types of support included counseling, stress coping, and behavior therapy, which included elements of self-management and encouraged patients to solve their own problems. Among measurement tools, employment status was used to measure the main outcome. In addition, QOL outcomes and psychological distress were measured in more than half of the articles.

In the future, based on the characteristics of the psycho-educational support revealed in this study, it will be necessary to work on the development, intervention, and implementation of support programs for patients’ RTW. We also need to examine the effects of high-quality research designs and accumulate evidence.

Footnotes

Acknowledgments

The authors thank Editage () for English-language editing.

Conflict of interest

The authors declare no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

This paper was funded by JSPS KAKENHI, grant number 18K17546. The funder had no role in the study design, data collection and analysis, decision to publish, or preparation of the manuscript.

Supplementary materials

The supplementary tables are available from .

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