A Social-Healthcare Pathway to Facilitate Return to Work of Cancer Survivors in Italy: Implementation Process of the UNAMANO project

doi:10.21203/rs.2.17663/v1

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A Social-Healthcare Pathway to Facilitate Return to Work of Cancer Survivors in Italy: Implementation Process of the UNAMANO project

https://doi.org/10.21203/rs.2.17663/v1

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Purpose Return to work (RTW) is a major goal to promote cancer survivors’ social participation. A multidisciplinary social-healthcare pathway called UNAMANO was designed to support RTW in this population.

Methods UNAMANO was developed by the Azienda USL – IRCCS di Reggio Emilia (RE), in partnership with the local branch of the Italian Medical Association, nonprofit associations, vocational training institutions, social cooperatives, a labour union, and a chartered accounting firm.

Results UNAMANO is directed towards employed individuals diagnosed with cancer living in the Province of RE. It has been implemented through four actions: A) healthcare professionals training on work-related occupational rehabilitation; B) dissemination among community and stakeholders; C) recruitment and training of volunteers; D) cancer survivor engagement and provision of a personalized comprehensive intervention. This consists in providing information and occupational therapy to overcome barriers and facilitate RTW or social support through re-training and tailored job search strategies for individuals based on their risk of job loss.

Conclusions UNAMANO is the first Italian multidisciplinary social-healthcare pathway supporting RTW of cancer survivors. Addressing a wide area of cancer survivors’ needs, it provides personalized intervention to resolve work-related issues. We propose this patient-centred RTW model to promote an easier transition from hospital to community.Implications for cancer survivors UNAMANO can positively impact on cancer survivors’ health and well-being and can be provided at any stage of disease and treatment. UNAMANO ensures that RTW is coherent with cancer survivors’ health condition and expectations.

Oncology

Health Economics & Outcomes Research

Neoplasms

Return to Work

Cancer Survivors

Italy

Rehabilitation Research

Comprehensive Health Care

The number of individuals living with or beyond cancer grows every year due to the increasing incidence of cancer diagnosis, thanks in part to early diagnosis and to the improved effectiveness of treatments [1]. In 2018, new cancer diagnoses in Europe reached almost 4 million [2], representing 23% of new diagnoses worldwide [2,3]. Moreover, one-third of new diagnoses regarded individuals in their working age [4] who might need to return to work (RTW) during or after cancer treatment. Thus, RTW is a major goal in order to promote cancer survivors’ (CSs) social participation, which corresponds to fully carrying out activities of daily living and social roles [5]. Employment is a key factor in determining an individual’s social participation [6–8] since it represents a key element for self-identity and self-esteem, it provides financial support to the individual and his/her family, it allows the expression of abilities and talents, it gives normalcy to daily structure and, finally, it results in better health [9]. Moreover, RTW provides the opportunity to engage socially with colleagues and other individuals [10].

RTW of CSs is estimated to be 64% in the USA and in Europe (range 30–94%) [11]; different factors can negatively influence it [12]. As a matter of fact, unemployment risk is 1.48 times higher in CSs than in healthy controls [13]. For instance, those CSs who perceived lower work performance and work satisfaction want to retire early, as do individuals with physically demanding work [14]. Moreover, unsupportive work environments act as a barrier to the RTW process [15,16]. Finally, the type of cancer and the treatment-related side effects have negative repercussions on employment overall [17–19].

RTW of CSs is also an indicator of rehabilitation success [20], even though the work-related consequences of cancer are not always considered a focus of cancer treatment and rehabilitation [21,22]. As a matter of fact, RTW of CSs seems to be a neglected topic in different areas of Europe, as highlighted by the literature [20,23]. For these reasons, we considered it appropriate to fill this gap by collecting contextualized data on this topic and by implementing suitable rehabilitation aimed at the early promotion of RTW of CSs. Nowadays, few interventions exist that help people with cancer maintain their engagement and job performance at work [21]. These interventions would also widely support social participation through recovery in the physical, cognitive, emotional, and interpersonal domains of functioning, which may have declined during cancer treatment [24]. To date, multidisciplinary approaches including a combination of physical exercises, patient education, counselling, behavioural training and/or vocational counselling, have shown a moderate level of effectiveness in promoting RTW for individuals with cancer and other chronic conditions [25–28]. To be effective, these approaches need to be personalized to the individual and contextualized to the social and organizational environment [26,28]. Thus, we planned this multidisciplinary social-healthcare pathway called UNAMANO with the aim to support RTW of CSs in the northern Italian province of Reggio Emilia (RE). This manuscript describes in detail the local context and the implementation process of UNAMANO so that it can be replicated and adapted to other contexts.

Rationale

In 2014, the Accreditation and Designation Programme of the Organization of European Cancer Institutes (OECI) recommended that the Azienda USL—IRCCS di Reggio Emilia implement pathways to facilitate the social participation of CSs. The rehabilitation professionals of the Physical Medicine and Rehabilitation Unit of this Local Health Authority were thus entrusted with the development of actions addressing this recommendation. The consequent improvement plan focused on RTW as it is of major importance in achieving CSs’ social participation.

Firstly, a systematic review of the European literature was conducted to collect up-to-date data regarding RTW of CSs [23]. That review focused on the RTW rate of CSs employed at the time of diagnosis, their sick leave pattern, and on factors that acted as facilitators of or barriers to the process of work reintegration. It also highlighted the almost complete absence of data collected on this topic in southern and central Europe. Meanwhile, a cross-sectional survey was carried out to collect contextualized information about the RTW process of CSs living in the Province of RE [29]. Although characterized by good prognosis and employed at the time of diagnosis, half of CSs reported difficulties in the RTW process, attributable to the social environment at work, work tasks, health status, and patients’ perspective regarding their work ability. In 2016, a project proposal grounded on these data was awarded by the call for Community Welfare (WelCom) promoted by the local Manodori Foundation. The main purposes of WelCom were to detect the extent of socioeconomic vulnerability locally and to plan innovative services aimed at supporting them in dealing with their difficulties to prevent a dangerous spiral downward into poverty. Even though the Province of RE ranks among the top places in Italy in terms of economic development, the economic crisis of the last decade may be responsible for the increase in vulnerability and in poverty, which account for 30% and 3% of the population, respectively [30].

According to Italian Law 118/1971, the majority of patients with cancer are recognized as invalid for the duration of treatment and can thus receive sick pay, but only for a limited number of months, unless the disease results in significant and permanent functional impairment [31]. Thus, the majority of CSs do not benefit from medium-long-term financial and legislative protection. CSs are therefore potentially vulnerable [32] as they might need to return to work soon after diagnosis, even in the presence of treatment-related side effects, to maintain their financial independence.

UNAMANO was developed over the course of seven workshops held between January 2017 and July 2017. A project manager facilitated the cooperation among several local public and private companies and institutions that endorsed the project, each with a different area of expertise. Altogether, they created the specific network of UNAMANO, which includes the Local Health Authority, the local branch of the Italian Medical Association, four nonprofit volunteer associations, three vocational training institutions, four social cooperatives, a labour union, and a chartered accounting firm (see Appendix A for a detailed list).

Since it was launched in November 2017, UNAMANO has been operating to provide comprehensive care to address the issues encountered by CSs in the RTW process.

The context of implementation

UNAMANO was developed in the Province of Reggio Emilia, Emilia-Romagna Region, in northern Italy. This Province has a population of 530,000 and includes one medium-sized city (Reggio Emilia – population 167,000) and numerous smaller towns and villages. The large main hospital is in the city of Reggio Emilia and five smaller provincial hospitals are in each of the five health districts. Cancer treatment is provided in the main hospital as well as in three of the provincial hospitals. The Province covers an area of 2,291 km², mostly plains, but also hills and mountains. The local economy is based on different sectors: agriculture and animal farming as well as widespread, specialized industry, including the ceramic industry, construction materials and technologies, mechanical engineering, the automotive industry, the food processing and agroindustry, biomedical industries, and fashion and textiles [33,34]. Moreover, the nonprofit sector and tourism are also strong, making this province one the major economic realities in Italy and in Europe [35].

According to the latest data from the Italian Institute of Statistics (Istat), in 2016 there were 41,505 active companies in the Province of Reggio Emilia, 58% of which registered as self-employment [36]. Most of the active companies (94%) had fewer than 10 employees, 5% had 10 to 49 employees, and only 1% had more than 50 employees. In the same year, the employment and the unemployment rates for individuals from ages 15 to 64 years were 68.2% and 4.7%, respectively [37,38]; the latter was considerably lower than the Italian average.

In 2014, cancer incidence in the Province of RE reached 3205 cases (0.6% of local inhabitants), excluding non-melanoma skin cancer: the most common cancer diagnoses were lung and prostate cancer among men (15% both) and breast cancer (30%) among women and the 5-year survival rate of all cancer sites was 62.1% [39].

There are nearly twenty nonprofit volunteer associations in the province that offer different services to cancer patients and to their caregivers, e.g., home health assistance, fundraising, wigs bank, and so on. Thus, the local social context is clearly very aware of and sensitive to cancer and the cancer-related consequences that might impact on everyday life of diagnosed patients and their families.

Aims of UNAMANO

The primary aim of UNAMANO is to support CSs in their RTW process by providing a personalized care intervention delivered through this new, contextualized, social-healthcare pathway. The secondary aim is to direct CSs who are at high risk of losing or have already lost their job to the appropriate social support.

Study population and eligibility criteria

UNAMANO is for all employed individuals living in the Province of RE who receive a diagnosis of cancer.

Implementation of UNAMANO

UNAMANO has been implemented through four actions (A, B, C, D): actions A-C concern its promotion; action D consists in engaging CSs and in providing a personalized, comprehensive intervention. Action D is managed by occupational therapists (OTs) and involves several professionals who collaborate in planning a multidisciplinary intervention tailored to that CS’s specific needs. It consists of three types of support that are provided singly or in combination: information regarding employment law; occupational therapy to overcome barriers and facilitate RTW for CSs; social support through the provision of re-training and job search strategies for those CSs at high risk of job loss and for those who have unfortunately already lost their job by the time they join UNAMANO.

Figure 1 reports the Gantt Chart of the project; while Table 1 describes the role played by the network in each action.

Action A – Healthcare professional training on work-related occupational rehabilitation

The first action consisted in holding meetings to inform all the healthcare professionals involved in the care of cancer patients about UNAMANO. This included professionals from several disciplines working in different wards (oncology, haematology, rehabilitation, radiotherapy, and surgery). Training events were also held for the general practitioners and the occupational physicians working in the Province. Training events were conducted by the healthcare professionals of the pathway, namely the OTs, three physicians, a physiotherapist, a psychologist, and a nurse. During the meetings, updated information about work reintegration was reported, the rationale of UNAMANO was illustrated, and straightforward indications for referral were provided.

Action B – Dissemination in the community and to the stakeholders

Action C – Recruitment and training of volunteers

This aim of this action, started in February 2018, was to recruit volunteers to support the initiative. UNAMANO contacted several nonprofit cancer volunteer associations to describe its pathway and to identify possible areas of volunteer work. The main area identified was providing CSs with general information regarding UNAMANO and employment law.

Consequently, three specific training events were organized to recruit volunteers willing to support UNAMANO. During these events (which lasted three to four hours) the OTs, the physiotherapist, and the psychologist introduced UNAMANO and talked about useful communication techniques when dealing with CSs. The Local Health Authority’s data privacy office described to the volunteers how to collect, record, and protect sensitive data and the CSs’ written informed consent. Finally, the labour union, the social cooperatives, and the vocational training institutions participating in UNAMANO explained their specific roles in the network and provided in-depth information about employment law.

Action D – CS engagement and provision of personalized care

This ongoing action is made up of two activities: the first is the engagement and screening of eligible individuals; the second is the provision of the multidisciplinary, personalized, comprehensive intervention (Figure 2).

CS engagement and screening

In-Forma Salute, a service provided by the Medical and Patient Library of the Local Health Authority, is the point of contact with UNAMANO. In-Forma Salute is in the main hospital of the Province. The service was born in 2005 to help patients, families, and citizens obtain comprehensible, evidence-based health information. The nurse, who is also an information specialist and is responsible for this service, provides a wide range of information in response to various requests from patients and family members (e.g., health-related, logistical, etc.): a frequent patient request regards legal protection in the workplace based on employment law. For these reasons, In-Forma Salute was chosen as the project’s point of contact; citizens can access In-Forma Salute directly either in person, by telephone, or by email in order to receive personalized information.

If the eligible criteria are met, the information specialist-nurse, with the volunteers’ assistance, provides information about UNAMANO and collects the written informed consent to be included in the project. Then the OTs make an appointment and proceed with the first screening, which consists in administering the Occupational Questionnaire (OQ) to define the risk of job loss (Appendix C).

The OQ was developed by our research group by taking into consideration the key factors that emerged from studies conducted in Europe and locally [23,29]. The OQ is composed by 23 closed- and 3 open-ended questions; as some sections are mutually exclusive, each participant answers an average of 13 questions. Collected information regard:

sociodemographic factors (age, education level, marital status and family members);
work-related factors (employed/not employed; employed in private/public sector; description of a typical workday, employment contract and classification, work schedule flexibility and flexibility in how and when to carry out daily tasks, number of colleagues, and years of employment in the current company).

The open-ended questions focus on the CSs’ perspective regarding the potential work-related difficulties that may be encountered during the RTW process. Questions regarding health-related factors are not included in the OQ, so recruited CSs are not forced to report their cancer diagnosis and treatment course. If CSs are no longer employed, the OTs obtain more information regarding social status, employment history, and professional training with a specific Social and Work Questionnaire developed by a cooperative of the network (Appendix D).

After the first screening, recruited CSs are contacted by telephone within 10 days by the OTs for a second meeting in order to share the personalized intervention planned to overcome work difficulties.

Provision of personalized comprehensive intervention

Based on the information collected by the questionnaire/s, the OTs share with the individual the most suitable personalized intervention and implement it; based on the individual’s needs, other competent professionals of the pathway are involved. Therefore, CSs can receive any of the three types of support, or a combination of these: information, occupational therapy, and social support.

Information on employment law

Information is provided by OTs in cooperation with the nurse-information specialist and the labour union. It is delivered at the In-Forma Salute office in a face-to-face meeting. The aim is to provide information about the benefits and the legal protection in the workplace under Italian Law [31, 40,41]. Legally recognized disability is the essential prerequisite for accessing welfare and workplace benefits: no benefits are granted to individuals with up to 33% disability; non-economic benefits are granted from 34% upwards (e.g., paid sick leave) ,and economic benefits may be granted from 74% upwards (e.g., disability pension).

Also, from 46% disability, unemployed or part-time employees can register in the Provincial Labour Lists to find a more suitable job.

Moreover, the Italian law requires companies to hire a proportion of disabled workers (at least 60% disability) based on the overall number of employees. Disabled workers are assigned to tasks compatible with the current health condition and can benefit from work schedule reduction. Finally, whenever possible, disabled workers can choose among different places of work, and paid leave of absence.

However, for most CSs, these laws do not all apply for long as, in most cases, disability is temporary and not very severed.

Occupational therapy

Occupational therapy is guaranteed for CSs who, after the initial screening, are considered at low-medium risk of job loss or with RTW difficulties. These individuals are assessed in depth to define the personalized intervention.

At In-Forma Salute, the OTs administer the Work Ability Index (WAI), an assessment tool that collects information about CSs’ perception of their work ability. Moreover, a Work Assessment Questionnaire (WAQ) was developed by our research group in order to obtain exhaustive information regarding the work-related factors that may influence the RTW process (Appendix E). The WAQ collects data in the following areas:

physical capability (e.g., intensity level, finger movement, using the stairs, balance, bending, etc.);
cognitive performance (i.e., attention, memory, multi-tasking, pressure management, data processing, etc.);
workplace and work tasks (i.e., environmental and organizational factors, barriers, responsibilities, supervision roles, independent or dependent work, work relationships).

For each item, work task frequency (never, sometimes, always) and perceived physical tolerance/ability (not able, partially able, able) are investigated.

After this in-depth assessment, the OTs ask the CS for permission to involve his/her employer and occupational physician in order to create a RTW plan shared by both sides (employee and employer). This is the desirable scenario: OTs evaluate the workplace location and setting and observe the CS during the execution of routine tasks. Difficulties are analysed, and the occupational therapy aimed to overcome these difficulties is implemented with the collaboration of both sides. This can include one or several of the following: accommodation of the workplace environment, accommodation of the tasks, indication to use custom disability devices, energy conservation techniques, implementation of an effective communication plan between employer, employee, and colleagues.

Furthermore, based on the OTs’ assessment, further professional support from the psychologist, the labour union, the social cooperatives, and the vocational training institutions can be activated. The psychologist is involved when the OTs recognize the CS’s need for the development of self-planning skills. The labour union is involved to support the individual with employment rights, when necessary mediating with the employer regarding critical issues in the RTW process (e.g., work schedule). Social cooperatives and vocational training institutions can be involved when a CS requires re-training to maintain employment at current company by performing other tasks. The OTs are responsible for the choice of which professional to involve, based on the assessment carried out.

If the CS does not agree to involve his/her employer and occupational physician, the OTs collect as much detailed information as possible regarding work-related factors during a face-to-face meeting or by telephone. If necessary and if possible, work-related tasks can be simulated during the meeting to allow for a more reliable description of tasks. Based on these data, the intervention is planned by the OTs and delivered to the individual. However, as the employer is not directly involved in making any accommodation suggested, the CS him/herself has full responsibility for doing so. In these cases, which are not ideal but which we expect may occur, the interventions are limited in their strategies but could still include a certain degree of accommodation of the workplace and/or tasks, the use of small disability devices, and energy conservation techniques. The individual can also be trained in more effective communication strategies to be applied in the workplace.

Social support

Social support is guaranteed to CSs who, after the initial screening, are considered at high risk of job loss and for those who, unfortunately, already lost their job before joining UNAMANO. Social support is provided by the social cooperatives, the vocational training institutions, and the labour union. The OTs’ role is to create a link between CSs and these components of the network, which will contact the individual to make an appointment at their local offices. Social support is realized through skills analysis, job search workshops, professional internships, and soft skills training. For those individuals at high risk of job loss, the labour union mediates with employers by handling the critical issues in order to facilitate a reintegration in the same company, including considering different roles or responsibilities. For those in search of a new job, the social cooperatives and the vocational training institutions help in the job search and provide training in areas that need workers. Furthermore, in response to specific needs, professional internships based on CSs’ aptitude and skills could be undertaken.

The aim of this manuscript was to describe the implementation process of UNAMANO, a multidisciplinary social-healthcare pathway implemented in the Province of Reggio Emilia. UNAMANO has been promoted through the training of healthcare professionals, dissemination among community and stakeholders, and recruitment and training of volunteers, and consists in the provision of comprehensive personalized care for working age CSs. UNAMANO helps CSs at low-medium risk of job loss in overcoming difficulties in the RTW process and supports CSs at high risk of job loss in searching for new job opportunities.

Strengths of the study

This study describes the first Italian RTW care model for CSs, based on previous sound European and local epidemiological studies [23,29] and on the features of the local context.

UNAMANO was created thanks to the contribution and expertise of different professionals in the social and healthcare areas of practice. These professionals make up the network (Appendix A); working in collaboration, they implement the innovative pathway that provides broad support to CSs. In this pathway, a pivotal role is played by the OTs, who provide CSs with healthcare support aimed at improving work ability through personalized accommodations and strategies [42]. The extensive cooperation within the network, especially from those members that provide social support, allows for an exhaustive CS assessment and, consequently, comprehensive rehabilitation support.

Moreover, UNAMANO has informed the main local professional and industry associations representing different economic sectors about this pathway and has gathered their perspective as significant stakeholders [43].

Integrating UNAMANO into standard cancer care practice would guarantee a prompt CS needs analysis and the consequent provision of personalized care. Thus, the transition from hospital to workplace would be facilitated and the quality of RTW would improve.

The components of this RTW care model have been described in detail, as has the context of application, with the aim to provide all the necessary information to replicate it in other similar contexts. Furthermore, a wide set of feasibility indicators has been proposed and will be reported at the end of the project in order to collect data on its suitability.

Limitations of the study

While UNAMANO is an innovative multidisciplinary care model, implementing it in clinical practice may prove difficult. In fact, healthcare professionals, at least in this specific context, do not usually view workplace reintegration as an aspect that completes treatment [44–46]. Healthcare professionals, even those trained on work-related occupational rehabilitation, might not investigate employment status or might underestimate work difficulties and disease-related issues. Therefore, they may not refer CSs to UNAMANO. On the other hand, some CSs may not contact In-Forma Salute despite their healthcare professionals’ advice [47].

Another potential limit is that informed but ineligible individuals may contact UNAMANO for help in finding a job or in changing their current one. This might be particularly true due to the recent economic crisis, which has led to greater unemployment even in this highly industrialized area [38]. In those cases, general information support will also be provided in order to facilitate access to appropriate services. However, there is the risk that this new project is mistaken for an employment agency or service. Indeed, UNAMANO does not duplicate services already in place in the Province; its aim is to fill a gap in fostering a seamless transition from hospital to workplace by linking all services in the pathway [48].

These two limits, particularly the former, could delay project implementation and its success in terms of feasibility. This is a pivotal aspect to consider because future financial support of UNAMANO will be determined by its feasibility and effectiveness and in light of other emerging priorities.

UNAMANO could have a positive impact on CSs’ health and well-being and it can be provided at any stage of cancer disease and treatment. UNAMANO follows CSs over time, ensuring that the CS’s work situation is in line with his/ her health condition and expectations.

Thanks to the OTs’ support and to specific training, healthcare professionals involved in the care of cancer patients will increase their knowledge of and be more sensitive to RTW issues. This will probably lead to the adoption of a more holistic approach to patient needs. A successful RTW could also reduce the risk of economic frailty of patients and their families [49] and lead to a reduced, more appropriate use of health services in CSs [50]. Therefore, in light of all the topics here discussed, UNAMANO could fill an important gap in the care of cancer patients.

RTW: return to workCSs: cancer survivorsRE: Reggio EmiliaOECI: Organization of European Cancer InstituteWelCom: Community WelfareOTs: Occupational TherapistsOQ: Occupational QuestionnaireWAI: Work Ability IndexWAQ: Work Assessment Questionnaire

Appendix A. List of the social-healthcare pathway institutions of UNAMANO

Appendix B. Flyer of the UNAMANO project

Appendix C. Occupational Questionnaire

Appendix D. Social and Work Questionnaire

Appendix E. Work Assessment Questionnaire

Appendix F. TIDIeR checklist

Ethics approval and consent to participate

This project was approved by the Ethics Committee of the Province of Reggio Emilia (2018/8410).

Consent for publication

Not applicable

Availability of data and materials

Not applicable

Competing interests

The authors declare that they have no competing interests

Funding

UNAMANO is funded by the Manodori Foundation of Reggio Emilia and the Azienda Unità Sanitaria Locale – IRCCS di Reggio Emilia.

Authors' contributions

SP, EM, SC and EC implemented UNAMANO pathway. SP, SC, ER and SF developed the questionnaires. SP, SC, ER and EM have drafted the manuscript. All authors have read and approved the submitted manuscript.

Acknowledgements

We thank Jacqueline M. Costa for the English language editing

Reporting standards

TIDIeR checklist and guide has been used to describe in detail the implementation process of the UNAMANO project with the aim to allow its replicability and adaptation to other contexts. The completed TIDIeR checklist has been provided as additional file (Appendix F).

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Table 1. Actions implemented
Action	Aim	Institutions involved	Brief description
A. Healthcare professional training on work-related occupational rehabilitation	To inform all the healthcare professionals involved in the care of cancer patients about UNAMANO	Local Health Authority Italian Medical Association One nonprofit volunteer association	Training events for healthcare professionals involved in cancer patient care
B. Dissemination in the community and to the stakeholders	To raise awareness in the community and among the stakeholders	Local Health Authority Two nonprofit volunteer associations Labour union	Creation of flyers and the website Dissemination during community events Dissemination through newspapers and social media Brief meetings with professional and industry associations
C. Recruitment and training of volunteers	To recruit volunteers to support the initiative	Local Health Authority Two nonprofit volunteer associations Social cooperatives Vocational training institutions Labour union	Brief meetings with the nonprofit associations Training events for volunteers
D. CS engagement and provision of personalized care	To engage eligible CSs and provide them with multidisciplinary, comprehensive, personalized care	Local Health Authority Social cooperatives Vocational training institutions Labour union	CS engagement and screening In-depth assessment of individuals included Provision of information, occupational therapy, and social support, as needed

CS= cancer survivor

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A Social-Healthcare Pathway to Facilitate Return to Work of Cancer Survivors in Italy: Implementation Process of the UNAMANO project

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