Models for survivorship care

Models for survivorship care - ACSC

Design of follow-up care

Oncology specialists, GPs, nurses, rehabilitation specialists, dentists and others share a role in the survivor phase. Their tasks are to watch for and if necessary treat:

the late effects of cancer treatment (such as heart disease, infertility, reduced bone density)

recurrent or new cancers

the psychosocial effects of cancer and its treatment.

Consistency of follow-up contact is important to survivors. A study of lung cancer patients showed they preferred:

being able to see the same doctor or medical service professional at each visit

knowing which doctor or nurse to contact if queries arose between follow-up appointments

knowing they could book an appointment or contact a medical service professional involved in their care regarding health concerns between visits.

Survivors are most concerned about recurrent disease and may be reassured by regular follow-up, specialist expertise and quick access to tests.

Follow-up review with a doctor is preferred but a combination of a medical specialist and another health professional also appears to be acceptable.

Patient-centred care

The models discussed below all entail some measure of the principle of patient-centred care. Patient-centred care:

is educative and involves written management plans

understands the ‘whole person’ and is inclusive of family and friends

enquires about and meets a person’s emotional and physical needs

is respectful of individuals’ preferences

seeks common ground regarding management, including shared goal-setting

is delivered in a coordinated and cohesive manner and includes regular follow-up.

Patient-centred care can increase survivors’ adherence to management protocols, reduce morbidity and improve quality of life. Other advantages may include fewer emergency department visits, fewer inappropriate admissions and readmissions, and less unnecessary diagnostic testing.

Patient-centred care is important at all stages in the cancer survivor’s journey.

Traditional follow-up: problems and alternatives

In Australia, most follow-up care is provided by cancer specialists. This is particularly the case in metropolitan areas. However, as the number of cancer survivors increases and cancer treatments develop, more pressure will be placed on specialists. As one US physician puts it, ‘The reduction in the number of medical oncologists parallels a growth in the number of patients with cancer, a result of both the aging of the population and our success in creating a growing cadre of cancer survivors.’ (Patricia Legant 2010 ) Survivors treated by a specialist in a busy practice may be lost to follow-up.

Research suggests that other models of follow-up care, including shared care and follow-up clinics, may be equally effective and acceptable to survivors, as well as less costly. A further model, supported self-management, also has promise.

A survivorship care plan is integral to each model.

Shared care

This means care shared between the survivor’s specialist oncologist and their usual GP.

GPs’ involvement in cancer care in Australia has traditionally been limited; however, there is general support and enthusiasm for greater GP involvement in survivorship care.

GPs need to be well resourced to take on the coordinating role, and crucially need good communication with the oncology team. Survivors need to feel they can trust their GPs to provide survivorship-specific care.

The paper by Oeffinger and McCabe (see links) offers a useful model of shared care, adapted from the IOM report. It proposes the primary and secondary responsibilities of the oncologist and primary care physician.

Treatment summaries and survivorship care plans can be effective communication tools between oncologists and GPs.

Advantages and disadvantages

In this model, the survivor benefits from the continuing involvement of their oncologist as well as the personal knowledge and probably greater accessibility of their GP. The GP is more likely to provide general preventive health advice. The survivor is more likely to be able to see their GP on the same day if they have an urgent problem.

A recent systematic review compared GP versus hospital-based review of patients with cancer. The authors found no statistically significant differences regarding cancer recurrence rates, survival, patient wellbeing or patient satisfaction.

A possible disadvantage is confusion about which medical service provider is responsible for various aspects of care. A survivorship care plan could help to eliminate this confusion by clearly stating which medical service provider is responsible for each aspect of the survivor’s care.

There may also be problem of perception: survivors may have more trust in their oncologist, who they perceive as having saved their life or perceive that GPs are not sufficiently skilled to conduct follow-up; patients need to feel confident that their GP can provide complete survivorship care.

Addressing such problems may require more undergraduate and postgraduate education on care of cancer patients and survivors, communication skills training, and better ways of transferring information about patients between oncologists and GPs. Evidence-based guidelines and resources on follow-up care are needed.

Long-term follow-up clinics

There are several models being examined. Survivors may be referred:

for a single visit to a clinic, during which a medical summary and a surveillance plan are prepared and counselling is given on psychosocial needs and risk reduction

to a nurse-led survivor clinic for follow-up based on a plan developed by the survivor’s multidisciplinary team. The survivor attends for a period of time and is then ‘transitioned’ by the nurse practitioner to their GP; communication continues where necessary between the nurse, GP and oncologist

to a long-term follow-up clinic staffed by experienced specialist oncologists, nurses and others involved in psychosocial care.

Advantages and disadvantages

The above three models vary in cost; models that encompass nurse-led and GP-based care are likely to be lower cost than continued follow-up by a cancer specialist. There is evidence of effectiveness of late effects clinics for survivors of childhood cancers, and promising research and thoughtful modelling is underway. However, because these models are relatively new, there is limited evidence to show that they will improve the long-term outcomes for adult survivors.

Supported self-management

This is a relatively new approach for which there is little research exploring the benefits to survivors.

In this ‘collaborative partnership’ model of follow-up care, the survivor is supported by health professionals and services to manage their own care. This entails supporting survivors with tailored information about complications, recurrence and late effects and aiding and encouraging positive health-related behaviours.

For this model to work, both health professionals and the survivor may need to learn new skills to enable effective collaboration. The survivor may need assistance to develop the confidence and skills to learn about and manage their own health and wellbeing. The health professional may need to learn techniques for supporting survivors to self-manage.

Advantages and disadvantages

The model encourages a collaborative, non-adversarial relationship between survivor and medical service professional. Although evidence is lacking, it may help to improve a survivor’s confidence, sense of self-power and possibly health-related behaviours.

However, this model will not be appropriate for every survivor; not every survivor wants to play such an active role in their follow-up. The model requires that the health service provider allocates time to assess a survivor’s needs and confidence around self-management, and supports them to collaborate in management of their care. Health professionals may need additional training so that they can collaborate comfortably with patients. And time would be needed to identify and access materials, services and programs that will support survivors and health professionals.

There is a lack of research to show that self-management enhances long-term survivor outcomes.