JONT Journal

Lay Summary

The worldwide incidence of cancer is increasing. In Portugal colorectal cancer has the highest number of new cases per year and cancer survivors five-year after diagnosis.

Cancer has a significant impact in patients physical, emotional, and social wellbeing.

While the number of cancer survivors increases, follow-up is perceived as the management of a chronic disease.

This research aimed to evaluate the role of primary care physicians in the follow-up of colorectal cancer patients, to determine which patients with colorectal cancer could be followed up by general practitioners, the preferred follow-up model and which conditions should be guaranteed to ensure follow-up according to the preferred model.

The main findings indicate that a need to define a clinical pathway (what should happen to the patient), clarify the follow-up objectives, identify a discharge cut-off from hospital to primary care, and a higher focus on survivorship are essential. A shared-care model was considered the best suited and essentially is the result of a higher proximity of care.

It is recommended that hospital and primary care physicians and cancer survivors together define a follow-up program and a process for patient-centred care aligned with follow-up expectations as well as educational materials for survivors and families.

Introduction

In Portugal colorectal cancer is the first most common cancer, with an incidence of 10,270 new cases annually and a 5 year - prevalence of 27,627 cases [1]. In 2018, colorectal cancer in Portugal was responsible for 4,214 deaths [1].

In Occidental countries colorectal cancer survivors account for a considerable number of cancer survivors [2]. Cancer survivors living longer will be at higher risk of long-term and late effects. Cancer has a significant impact in patients’ physical, emotional, and social wellbeing and is associated with a significant societal and economic impact due to premature deaths and loss of productivity because of significant morbidity and disability disease generated. In the European Union, the costs associated with cancer in 2009 were 126 thousand million euros and the costs due to loss of productivity by premature death were 42.6 thousand million euros. In Portugal, these costs were 2.05 thousand million euros, representing 1.22% of GDP [3]. Another research found that the cost of follow-up per colorectal patient in a Portuguese University Hospital was in average EUR 2,444.85 (EUR 510.62 to 4,918.79), with an average adjusted annual cost of EUR 539.09 [4].

As the number of new cancer cases increase every year, conventional cancer patients’ follow-up represents a substantial burden of hospital outpatient activity avoiding physicians’ higher focus in the acute phase of the oncologic disease.

The complexity of cancer management can induce some fragmentation, lack of coordination and duplication of services and produce Health Organizations with less efficiency [5,6]. A cancer survivor is a chronic disease patient who needs to cope and live with her/his disease until the end of life. In addition, these patients could experience several comorbidities resulting from therapeutic decisions’ side effects that transform their survival in a personal and complex challenge.

There is growing evidence suggesting that the follow-up of cancer patients, performed by primary care is as effective as the follow-up performed by hospital specialists and is associated with gains in patients’ satisfaction and reported subjective health [5,7]. The same applies to colorectal cancer when compared the follow-up by general practitioners and surgeons [8]. Other studies demonstrated a significant benefit in follow-up by primary care, by less advanced disease, fewer preoperative complications, fewer examinations by hospital specialists [9] and an improvement in subscales such as role functioning, emotional functioning and pain, and cost savings due to lower consultations’ costs and fewer trips to hospital [10].

Another advantage of follow-up by primary care is to allow oncologists to focus on the acute phase of disease [11]. Despite general practitioners believe that follow-up by hospital specialists is key in case of recurrence, they are willing to assume follow-up immediately or 1-3 years after the completion of the treatment [12-15].

More and more, alternative follow-up models to the hospital centred approach are encouraged with patient’s involvement in decision making, however some patients continue not having the opportunity to actively participate in the selection of the follow-up model which can be more suitable for them [16,17].

Conventional follow-up accounts for a substantial burden of hospital outpatient activity and the perceived benefit is now in debate regarding the early diagnosis of recurrence and improvement of survival [18].

The challenges related to human resources and the organizational model of care delivery to cancer patients, ensuring the ability to respond adequately in the time recommended as acceptable in quality care, as well as the associated economic impact, have emerged as central themes and place primary care as key in the follow-up of colorectal patients.

Objective

The general objective of this research was to evaluate the role of primary care in the follow-up of colorectal cancer patients.

The secondary objectives were to determine which patients with colorectal cancer could be followed up by primary care practitioners (clinical, sociodemographic and other characteristics), to determine the preferred follow-up model for the Portuguese reality and which conditions should be guaranteed to ensure follow-up according to the preferred model.

Materials and Methods

Literature research strategy

A B-On (Online Knowledge Library) comprehensive literature search was carried out using the following key words: “integration of care in oncology”, “integrated disease management in cancer”, “cancer patients follow-up”, “colorectal cancer follow-up”, “cancer survivorship” and “colorectal cancer primary care follow-up”. We selected 110 articles with available full text and related to the research topic.

Nominal Group Technique

The identification of colorectal cancer patients who can be discharged to primary care for follow-up, the preferential follow-up model and which conditions must be guaranteed to ensure these patients’ follow-up according to the selected model was performed by Nominal Group Technique, which uses a combination of qualitative and quantitative techniques and intends to produce consensus around relevant information about a subject.

A meeting took place in NOVA National School of Public Health using an expert panel composed of two oncologists, a gastroenterologist, a surgeon, two family physicians, the head of Oncology South Registry and the President of Europacolon Portugal. The participants are well known national experts in the field of colorectal cancer, cancer epidemiology, primary care clinical governance or patient’s association who may add valuable insights and have been selected due to their relevance for this research. All the participants signed a participant consent given permission to register and record their declarations and comments with the exclusive purpose of analysing them while compiling results and preparing the conclusions. The sample size was defined as per nominal group technique recommendations.

The meeting started with a brief introduction to the topic, presentation of the meeting objectives and three questions by the first author, a pharmacist by training, hospital manager. All the discussions were conducted and co-chaired with the second author, a senior researcher, assistant professor of NOVA National School of Public Health and senior hospital manager.

The questions predefined were the following:

• Which patients with colorectal cancer can be referred to Primary Care in their follow-up (clinical and sociodemographic criteria).

• What is the preferred follow-up model in our reality? a) shared follow-up b) new referral c) hospital.

• What conditions must be guaranteed to ensure the follow-up of these patients in the selected model.

We followed a four-step structure to conduct the nominal group technique:

1. Generating ideas- The first author presented the question in written form and read it to the group. The participants wrote ideas in brief phrases and worked independently.

2. Recording ideas- Participants were engaged in a round feedback session but without debate. The first author wrote the idea from each participant, visible to the entire group, until all participants’ ideas had been recorded.

3. Discussing ideas- Each recorded idea was discussed by the group for clarity and determination of the importance.

4. Voting on ideas- Participants vote privately to prioritize the ideas by writing the five most important items from the group list, with the most important receiving a rank of 5, and the least important receiving a rank of 1. Votes have been scored to identify the ideas rated highest by the group which corresponded to the ideas in response to each of the questions.

After the meeting the first author analysed each poll results, each participant’s audio recording, quotes, and field notes. To ensure rigor and increase authenticity, data and results have been sent to the other authors and the group members for checking and validation.

Results

The panel listed twenty ideas about which patients with colorectal cancer can be referred to Primary Care in their follow-up, including the identification of clinical and sociodemographic criteria (Table 1) and prioritized five. The consensual results obtained by the national expert panel identified the clinical pathway as a critical factor, that is, what should happen to the patient, with an available integrated clinical record followed by the identification of the organizational and family system criteria (Table 2). It was considered fundamental to clarify the objectives of the follow-up program, which needs to be patient centred, with the assessment of the risk linked to the disease and the time since diagnosis, being that in case of high risk of recurrence (rectum carcinoma, surgery R1 and R2 and familiar risk of colorectal cancer), patients must maintain a connection to hospital due to the high specificity of the vigilance program. The definition of the follow-up cut-off and what must happen to the patient comes in third place. Additionally, there was the question of professional management of patient clinical data and access specific to the hospital setting, as well the fact that nowadays, follow-up does not focus a lot on survivorship. The patients considered eligible for shared care were all the patients with adenocarcinoma of the colon treated with curative intention stages I, II and III, without therapeutic incapacitating sequelae and a life expectancy greater than 5 years, with a functional state which will allow surgery for metastasis resection in case of recurrence. The recommendations regarding the organizational and family systems are based on very well-organized channels between the primary care practitioner and the hospital team beyond clinical history sharing, a shared-care model with a protocol agreed on by both settings, having primary care managing the regular and periodic exams which require multiple journeys to hospital and the hospital managing easy access to technology and comparative exams when required.

The existence of a family physician or interchangeable team, family support and proximity structures were also considered essentials. The panel recommended preferentially the shared-care model, which offers patients proximity to follow-up care (Table 3). For this, the existence of a pathology/cancer disease plan shared with everyone from the beginning, efficacious management of information sharing and efficacious access pathways, literacy, integrated care frameworks for both settings and appropriate definition of expectations regarding follow-up are mandatory (Table 4).

Discussion

The conclusions of the national expert panel reflect the ongoing discussion in the scientific community about the role of primary care in the follow-up of cancer patients. The need to define a clinical pathway, clarify the follow-up objectives and identify a discharge cut-off from hospital to primary care, as well as a higher focus on survivorship are some examples shared with the international literature and which have been considered essential pillars by the panel [19-21]. The moment of discharge was considered critical and is aligned with cancer survivors’ concerns about the format and content of the information shared at discharge from hospital, among others [22-24]. A choice centred on a shared-care model was considered the best suited to the national reality and essentially is the result of a higher proximity of care as already identified by other authors [11,25,26] and allows a better inter-sectorial cooperation [27,28]. According to the expert panel, it requires more professional information between the hospital and the primary care setting, which can rely on information integrated systems, as also recognized by other authors [16], patients’ follow-up specialization at both the hospital and primary care levels and the guarantee of a family physician or an inter-replacement team as well as a family support and survivor proximity structures. Once these requisites are assured, the experts considered that coordinated follow-up between the hospital and primary care is possible, with acceptance by all players in the network of their roles and participation. It is important to mention that for doctors the greatest challenge to this prosecution is the organizational and familial system, in which the organizational and payment model may not incentivize this approach while for the patient the major concern is to lose the connection to his doctor and access to hospital in case of suspicion of recurrence based on a patients’ experience of having or not having access, the additional feeling of safety generated by the hospital and the level of knowledge which the family physician has about oncologic disease.

Limitations

The use of the nominal group technique compared with other techniques has the disadvantage of minimizing discussion, which could contribute for a limitation in the development of more complete and robust ideas. The fact that experts have been chosen based on their knowledge, experience and higher engagement with this topic can be a limitation of the study and cannot exclude the possibility of different conclusions being obtained in another context, although the conclusions in our study are completely aligned with the international literature.

In agreement with other investigators [29], we conclude that there exist three key elements: knowledge transfer, communication channels and active patient involvement.

Conclusion

The worldwide incidence of cancer is increasing, being colorectal cancer one of the most prevalent cancers. The probability of a family physician having a cancer survivor older than 65 years is one in six [30], imposing many challenges to health care organizations and professionals. The conventional follow-up approach centred only on recurrence detection, is now complemented by late side effect monitoring, identification of new primary cancers and psychological support. The goal now is to identify survivor’s needs, especially in what concerns their quality of life, and identify areas for intervention to improve survivorship and cancer survivor centeredness, potentiating the value-based health care concept. New variants of follow-up are emerging and the role of the primary care in the follow-up of cancer patients is being introduced [31] as a valid option which they are willing to assume. The shared-care is based on a multidisciplinary approach, engaging both hospital and primary care health professionals, inclusion of patient preferences, effective systems technology inter-operability and inter-sectorial communication allowing access to the patient’s clinical information from diagnosis to treatment and follow-up, with a clear definition of roles, the elaboration of a care plan and mechanisms for future referencing when needed. For the national reality, the model which seems to provide a better answer is the shared-care model. It is recommended that hospital and primary care physicians and cancer survivors together define a follow-up program per tumour type and a process for patient-centred care aligned with follow-up expectations as well as educational materials for survivors and families.

Declarations

Consent to Participate: All the participants signed a participant consent given permission to register and record their declarations and comments.

Availability of Data and Material: The data underlying this article are available in the article.

Authors’ Contributions: All authors whose names appear on the submission made substantial contributions to the conception or design of the work, analysis and interpretation of data.

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