Outcomes and Feasibility of an Occupational Care Programme (TERRA) to Support Work Ability of Rare and Advanced Cancer Patients: A Report of 7 Cases

Approximately 40–50% of those diagnosed with cancer are of working age [1]. As a result of improvements in screening, treatment, and palliative care, cancer patients tend to live longer, and potentially with enhanced quality of life (QoL) [2]. This, in combination with the increasing retirement age, leads to a growing number of cancer patients aspiring to return to work (RTW) now and in the future [3].

Being able to work is not only important for financial reasons; it can also contribute to one’s sense of purpose and identity, add meaningfully to one’s self-concept and self-esteem, and can be a conduit to the realization of one’s core values [4]. For cancer patients specifically, work can provide a sense of normalcy and control over one’s life and enable them to view themselves as more than their disease. From a rehabilitative perspective, work can positively impact physical and mental health and alleviate treatment-related side-effects. Hence, returning to work and retaining work represent important aspects of cancer patients’ QoL [3].

Recently, two qualitative studies on work-related experiences of patients with rare cancer (“rare2work” [5]) and advanced cancer (“PalliaTurn” [6]) were conducted in the Netherlands. Both subgroups are typically excluded from “cancer and work” studies, due to the hypothesis that the experiences of these patients are too distinct to be studied within the wider cancer patient population. Results of the two qualitative studies indicated that (1) rare cancer patients tend to experience a more complex illness trajectory due to diagnostic delays and limited treatment options, affecting their work ability [5], and (2) advanced cancer patients can face lack of understanding and stigmatization regarding their desire and ability to work [6]. Both patient groups can experience medical and psychosocial outcomes that can negatively affect physical, cognitive, and psychological work ability [5, 6]. Tailored supportive occupational care specific to these patient groups has been identified as desirable and is currently lacking.

Therefore, a tailored supportive occupational care programme was developed (i.e., TERRA; recalibraTe lifE and woRk with and afteR cAncer), to guide the rediscovery of the role of work in the lives of people with rare or advanced cancer and to improve their work ability. The current pilot study aims to describe the outcomes and feasibility of the TERRA programme.

To assess preliminary outcomes and feasibility of the TERRA programme in patients with rare or advanced cancer, a single-armed, quasi-experimental design with pre- and post-programme measurements was applied.

As this was an exploratory pilot study, no sample size was calculated a priori. Patients were recruited via oncologists, patient organisations, and via social media channels, such as Twitter and LinkedIn. Additionally, participants in the abovementioned studies “rare2work” and “PalliaTurn” were contacted if they had given consent to be approached for future research. Patients who showed interest in participation received an information letter, an informed consent form, and a screening questionnaire indexing sociodemographic, disease-related, and work-related information. Patients were eligible for participation if they were (1) diagnosed with rare or advanced cancer a maximum of 5 years ago, (2) of working age at time of study entry (18–65 years), (3) contractually employed at time of diagnosis, (4) back at work, (partially) on sick leave, or (partially) on work disability/unemployment benefits, (5) intending to RTW or had already RTW, (6) not suffering from psychiatric disorders, (7) and proficient in Dutch. If a patient had rare and advanced cancer, they could choose which TERRA group they wished to attend.

The TERRA programme was co-created with Elffers Career Management (https://www.elffers.nl/), Care in Company (https://careincompany.nl/), and the Netherlands Comprehensive Cancer Organisation (IKNL) (https://iknl.nl/). An existing work-related programme was tailored to rare and advanced cancer patients, respectively. Five four-hour online sessions took place over 2 months, starting in April 2022 and ending in June 2022. Sessions had the following themes: (1) getting to know each other and setting work-related goals, (2) work preferences and life course, (3) values and memories, (4) qualities, dreams and, advice, and (5) future. The sessions consisted of plenary group discussions, discussions in pairs, and exercises. In addition, participants were given homework assignments. The programme was guided by experienced trainers from Elffers Career Management and Care in Company.

Pre- and post-programme outcomes were measured using validated self-reported questionnaires. Work outcomes included the following: work ability (primary outcome), measured using the Work Ability Index (WAI); work intention, measured using a non-validated question concerning intention to RTW; readiness for return-to-work, measured using the Readiness for Return-To-Work (RRTW) scale, with dedicated questions for those who have/have not returned to work; work involvement, measured using the Work Involvement Scale from the Work and Life Attitudes Survey; and work-life conflict, measured using the Work Life Conflict Scale of the Copenhagen Psychosocial Questionnaire (COPSOQ III). Health outcomes included the following: QoL, measured using the European Organization for Research and Treatment for Cancer Quality of Life Questionnaire (EORTC QLQ-C30); fatigue, measured using the Functional Assessment of Chronic Illness Therapy – Fatigue questionnaire (FACIT-Fatigue version 4); anxiety and depression, measured using the Hospital Anxiety and Depression Scale (HADS); unmet needs, measured using the Cancer Survivors’ Unmet Needs (CaSUN) measure; and self-efficacy, assessed using the General Self Efficacy Scale (GSES).

Programme feasibility was measured by means of a post-programme process evaluation questionnaire based on the RE-AIM (Reach, Effectiveness, Adoption, Implementation, and Maintenance) framework, which was adjusted by adding a “tailoring” category to fit the study design and target population [7]. Both participants and trainers completed the process evaluation questionnaire.

Descriptive statistics were generated, and differences between pre- and post-programme outcomes were presented in a within-person manner. Feasibility outcomes were reported descriptively, using proportions and percentages. Data were entered, cleaned, and analysed using IBM SPSS Statistics version 28.

In total, 4 rare cancer patients and 6 advanced cancer patients attended the first session of the TERRA programme. Mean age was 53 (SD 7; range 40–63) years. Eight participants were female and seven were married. In those with a rare cancer, sarcoma was the most common cancer type (N = 3). In those with advanced cancer, breast cancer was the most common cancer type (N = 3). Four rare cancer patients and 3 advanced cancer patients completed the programme and the follow-up questionnaire. Sample characteristics can be found in Table 1.

Regarding work-related outcomes, results for work ability were inconsistent across the seven participants who completed the pre- and post-programme measurements (Table 2). Three participants reported a one- or two-point decrease in post-programme work ability, two reported unchanged post-programme work ability, and two reported a one-point increase in post-programme work ability. In terms of RRTW, three participants shifted from the uncertain maintenance stage pre-programme to the proactive maintenance stage post-programme, while RRTW stage remained unchanged for the other four participants. Regarding work involvement (completed by the five participants who had returned to work), two participants reported decreased work involvement post-programme, one participant’s scores remained unchanged, and two participants reported increased work involvement post-programme. Regarding work intention (completed by the two participants who had not returned to work), scores increased for one participant and scores remained unchanged for the other participant. Lastly, work-life conflict scores (completed by those who had returned to work) decreased for two participants and increased for three participants post-programme.

Regarding health-related outcomes, QoL increased for six participants post-programme but decreased in one participant. Further, four participants reported a decrease in fatigue post-programme, while the other three reported an increase in fatigue. Anxiety and depression scores decreased in five participants post-programme, remained unchanged for one participant, and increased in one participant. Unmet needs decreased in five participants post-programme and increased in two participants. Lastly, all participants’ self-efficacy scores increased post-programme. An overview of all pre- and post-programme scores can be found in Figure 1.

Regarding Reach, ten participants attended the first programme session, seven of whom completed the full programme and post-programme measurement. Reasons for dropout were job promotion, disease progression, and the programme being perceived as too intense. Of the participants who completed the programme, only one participant missed a session. In terms of Effectiveness, all participants reported TERRA as being helpful in gaining insight into themselves (e.g., their personal and work-related strengths). Some participants reported that the programme made them feel more self-confident in general.

Regarding tailoring (range 0–10; Table 2), participants rated programme value with a mean score of 9 out of 10, with 10 indicating participants derived great value from the programme. Programme difficulty was rated with a mean score of 6 out of 10, with 10 indicating the highest difficulty. Furthermore, programme modality (i.e., online group sessions) was evaluated positively by both participants and trainers. Group size, session length, and programme length were experienced as being “just right” by 71% of participants. All trainers scored group size and programme length as “just right,” and 67% of the trainers scored session length as “too long.” Regarding Adoption, TERRA was reported to correspond with the organisational goals of Elffers and Care in Company. Certain aspects of Implementation deviated from what was initially intended. For example, breaks were prolonged, and the duration of in-session assignments was shortened. Trainers’ skills (i.e., listening, explaining, showing empathy, and expertise) were all scored with a mean score of 9 out of 10, with 10 indicating the greatest perceived skill mastery (Table 2). All trainers agreed that Maintenance of the programme is feasible, provided there is funding.

Some participants in this study showed modest improvements in RRTW, QoL, fatigue, anxiety and depression, unmet needs, and self-efficacy. However, post-programme work ability, work intention and work-life conflict, and work involvement were inconsistent and, in some participants, seemingly adverse. Both participants and trainers were optimistic about the feasibility of the TERRA programme. Many acknowledged the value of the programme.

Some findings deserve attention. First, the tentative and modest post-programme improvements (i.e., increased RRTW, QoL, and self-efficacy and decreased fatigue, anxiety and depression, and unmet needs) found in this study could be attributed to the programme design of TERRA. TERRA is based on peer support; a component that is known to positively influence QoL and self-efficacy among cancer patients [8]. Additionally, TERRA includes components inspired by personality psychology, meaning-centred psychotherapy, and narrative integration. Previous research conducted by van der Spek et al. [9] indicated that a meaning-centred group intervention designed to help cancer patients to sustain or enhance a sense of personal meaning, psychological well-being, and purpose in their lives, significantly increased their QoL and reduced depressive symptoms. These components, as well as a collaborative participant-trainer relationship, are founded in constructivism; a method known to promote effective supportive care [10].

Second, various factors can explain the inconsistent, and sometimes seemingly adverse, findings, e.g., regarding post-programme work ability and fatigue, that were reported in this study. To start, events that occurred in between measurements might have affected findings. For example, negative side-effects of cancer treatment, e.g., fatigue, are likely to have influenced health-related outcomes in our participants, as previously found [11], possibly contributing to inconsistent or adverse findings at post-programme measurement. Equally, positive side-effects of treatment, e.g., symptom alleviation, could have contributed to positive findings at post-programme measurement. Further, working participants reported experiencing problems at work, causing stress, which has been addressed in previous work as well [12], possibly inhibiting the effects of TERRA. Next, in earlier research, it has been indicated that multidimensional interventions, addressing, e.g., physical, psychological, and social recovery, are more effective regarding RTW compared to unidimensional interventions [13]. This may partially explain the inconsistent findings of TERRA, which is a unidimensional intervention.

Third, regarding feasibility of TERRA, adjustments made during the course of the programme to respect the needs of participants, such as extending breaks, were valuable for tailoring. Taylor et al. [14] studied occupational interventions for cancer patients and indicated that monitored tailoring of intervention programmes might improve outcomes. Implementation was, however, hindered by the heterogeneity of the participants’ RRTW phase as well as their illness phase. Stage-matched interventions could improve an intervention’s effectiveness by implementing techniques specific to a particular RRTW and/or illness phase [15]. On the contrary, other studies have indicated that a stage-matched approach does not improve outcomes, arguing that combining participants from different stages can also be of value [16].

To our knowledge, this is the first exploratory study on the outcomes and feasibility of an occupational care programme specifically tailored to rare and advanced cancer patients. TERRA aims to enhance work ability rather than RTW, and prioritises the individual and their personal wishes and values, which can be seen as an asset of the programme. This strength is reflected by participants highly scoring programme value. The programme’s modality (online group sessions) can be interpreted as a strength as it increases accessibility. Furthermore, as results of this pilot study were generally in line with findings from previous studies, internal and external validity were strengthened.

The following limitations should be mentioned. To start, the online nature of the programme limited social interaction and interpersonal connection. This might have limited the benefits that could have been derived from peer support. Further, despite widespread participant recruitment efforts, a low number of participants enrolled, potentially leading to inaccurate predictions or assumptions. (Self-)Selection bias might have occurred, due to recruitment methods promoting participation of more motivated patients. Next, in hindsight, the programme could have been more extensively tailored to the specific subgroups, with distinct elements for both rare and advanced cancer patients. The nature of the current programme relied on the strength of peer support, while subgroup tailoring could have further improved programme outcomes. A further limitation is the possible influence of socially desirable answers on the work, health, and feasibility measures, which might have overestimated participants’ functioning and experience of TERRA. Lastly, post-programme follow-up might have been too short. The post-programme measurement was performed within 2 weeks post-programme completion, possibly making it unattainable to demonstrate improvements in work ability. Participants made plans for their work-related future, received information, and built skills to execute their plans, but longer term follow-up (i.e., other studies often conduct a follow-up assessment after 6 months) is needed to assess true programme effects [13].

Several opportunities for programme improvement and future research were identified. First, shorter sessions should be considered to lower the threshold for participation and to lower participant burden. Second, longer follow-up times are recommended to identify whether work- and health-related outcomes improve over time, and whether the observed outcomes are sustained. Third, participants can be grouped according to their cancer subtype, RRTW stage, or illness phase. An intake interview may help with this grouping. However, currently, no concrete recommendations exist. Future research should conduct a larger pilot study or a randomised controlled trial, to reduce bias and come to a better understanding of the (cost-)effectiveness of TERRA. Also, in further research, tailoring can be enhanced by conducting evaluative participant interviews to gather personal perspectives based on which adjustments can be made. Lastly, the TERRA programme could benefit from incorporating a more multidimensional approach, which can be evaluated in a prospective study. Taken as a whole, these research ideas aid the development of an effective occupational care programme for rare and advanced cancer patients.

The TERRA programme appears to have promising effects on improving work- and health-related outcomes in patients with rare or advanced cancer. Additionally, feasibility was evaluated positively, and participants reported high levels of appreciation for the programme. Nonetheless, future research (e.g., a larger pilot study or a randomised controlled trial) to evaluate long-term outcomes and feasibility of the programme is vital. The CARE Checklist has been completed by the authors for this case report, attached as online supplementary material (for all online suppl. material, see https://doi.org/10.1159/000534451).

We would like to thank the participants, as well as the trainers, Machteld de Bont, Eline Toet, and Judith Maas, for their enthusiasm and their dedication to the TERRA programme.

The Medical Ethical Review Committee of the VU University Medical Centre determined that the study was not subjected to the Dutch Medical Research Involving Human Subjects Act (WMO) (registration number: 2021.0748). Written informed consent was obtained from the patient for the publication of sociodemographic and clinical characteristics and study results.

The authors have no conflict of interest to declare.

No financial support was received for this research.

Saskia F.A. Duijts, Linda Brom, and Amber D. Zegers developed the study. Floortje L. Hosman and Sascha C.A. Rozemeijer performed patient recruitment, supported the trainers during the sessions, gathered data, conducted the analyses, and wrote the first draft of the manuscript. Saskia F.A. Duijts, Linda Brom, Amber D. Zegers, Annemarie Becker-Commissaris, Heinz-Josef Klümpen, and Maurice J.D.L. van der Vorst revised the manuscript. All authors read and approved the final version of the manuscript.

Floortje L. Hosman and Sascha C.A. Rozemeijer share the first authorship.

The data supporting the findings of this study are available within the article and its supplementary materials. Further enquiries can be directed to the corresponding author, Saskia F.A. Duijts.