Long term care for cancer survivors

- striving for the best quality of life possible

by Birgitta Grundmark, Uppsala Monitoring Centre, the WHO Collaborating for International Drug Monitoring and Uppsala University, Department of Surgical Sciences, Endocrine Surgery, Ulla Martinsson, Uppsala University Hospital and Uppsala University, Department of Immunology, Genetics and Pathology, Marianne Jarfelt, Sahlgrenska University Hospital and Gothenburg University, Department of Pediatrics at the Institute of Clinical Sciences

girl by train
Photo Credits: ISTOCK/OLASER

The number of long-term cancer survivors is steadily increasing primarily in high-income countries, with the arrival and increased use of successful treatments. A similar increase is projected globally in low- and middle-income countries alongside the steady improvements and developments taking place in healthcare systems, where increasing attention is given to non-communicable diseases.

Survival rates increased rapidly in the 1970s-80s, due to improvements such as novel intensive treatment regimens, better supportive care, and adequate risk-group-adapted treatment and clinical organization.

Earlier, just being alive was previously an adequate source of contentment for both cancer survivors and the healthcare professionals who had treated them. However, with the development of more successful treatment methods, increasing numbers of survivors, and with this “new normal” where more patient groups are expected to be cured, this attitude is increasingly being replaced by the understanding that mere disease cure is not enough. Ex-cancer patients expect and demand the opportunity to live as full and rich a life as possible.  Cumbersome long-term or late side-effects, such as secondary tumours, infertility, cardiac and neuropsychiatric toxicity limit their ability to do so. These issues are now rightly receiving more attention.   

Desired outcomes of the workshop:

  • Guidance regarding the creation of national cancer plans globally to include systems for long-term follow-up of cancer, building on existing experiences and guidelines for young cancer survivors

  • Guidance on development of sustainable post-cancer knowledge centres or systems whether virtual or real, adaptable to local context; defining reasonable minimum elements required for their establishment

    Taking into consideration:

  • limited resources in most settings; guidance on prioritization

  • good patient engagement practices

  • the need for effective detection of both known and hitherto unknown late side-effects of treatment to allow improved treatment and potentially prevention, variable health literacy among patients: not every patient can be expected to be their own strong and responsible advocate

A paradigm shift in our perception of cancer could be imminent

With rapid development of targeted drugs and other modern treatment modalities on the horizon, a true paradigm shift in the perception of cancer diseases appears to be within reach.  If new drugs continue to deliver improved levels of disease-free survival, we may in the future be able to compare development in the cancer field as a whole with the HIV epidemic before and after the arrival of antiretrovirals, or with renal failure before and after the emergence of dialysis and renal transplants. Zero or low long-term survival rates could be replaced by a situation where most cancer patients survive and live long and healthy lives. Managing and minimizing the long-term side-effects of treatments, again when mere survival is not enough to satisfy us, is becoming an important focus for the future.

How do we globally move towards this goal of post-cancer life being as healthy and fulfilling as possible? What best practice can we all learn from and what are the most important issues to tackle?


The uneasy transition from oncology to other levels of healthcare for the ex-patient

A young male patient has completed his gruelling treatment for cancer. He is cured. He has started to adjust following an excruciatingly overwhelming period of his life where every day has been meticulously controlled according to some carefully crafted plan. The staff at the oncology unit have been his and his family´s close allies for months or years. The oncology follow-up is over and he is waved off to live the rest of his life. After initial adjustments, he starts believing in a normal future. A bright future lies ahead. Everything is over. Or is it?

Our patient may have received some information from his oncologist on the need for future handling of remaining post-treatment side-effects or on the potential risk for new cancers. He may have joined an online support groups of more or less informed co-patients.  

The gap is enormous between immediate handling of the disease which the oncologist with other specialized staff are well equipped to do, and what comes after this period.

Gaps in the knowledge of the non-oncologist

When a health problem arises later in a patient´s life, he may, depending on its nature, not necessarily seek the aid of his oncologist, as he may not suspect a connection with previous treatment. The non-oncology part of the healthcare system, e.g. primary healthcare professionals will very probably lack essential knowledge and insight into the possibility of a causal relationship with previous cancer treatment. This may lead to unnecessary delays in correct diagnosis and treatment or even a lack of adequate treatment.

The patient’s doctor, a general practitioner (GP), may or may not have been handed information on the treatment from the treating oncologist, a treatment she may only be vaguely familiar with. There may be some suggestions for future need for further long-term follow-up available - or not.  She may have had no training of common or rare drug-induced long-term health problems and since she would only rarely meet such patients, it would be difficult for her to discern iatrogenic from idiopathic health problems, which may require very different treatments to be successfully handled.

In essence, primary and secondary care professionals usually lack experience in delivering effective aftercare to cancer patients. In the best-case scenario, non-oncology healthcare professionals may have had some training on diagnosing and managing cancer patients early in their careers, but as knowledge evolves over time and, as skills and knowledge not constantly practised will obviously wane, the management of these patients may not be optimal even with otherwise skilled non-oncologists.

One must also realize that not all patients and settings are equipped to manage larger parts of their own care to an extent that is sometimes optimistically projected. Different solutions for different situations must be considered.

Whose responsibility is it to re-classify these individuals within the healthcare system? Presumably not the patients themselves, so should their GPs take the responsibility? How can knowledge be disseminated throughout healthcare systems? How do we best re-identify ex-cancer patients in society in order for them to get the opportunity to take advantage of new methods for long-term treatment and prevention? How can information on growing needs be integrated in health care systems, what kind of training would be desired and how can patients themselves be more actively engaged in the improvements in this area?

In some settings, creating paramedical oncologic positions for specially trained auxiliary staff could be discussed to cater for some patient needs, both regarding early and late aftercare, and act as a filter and contact point for more qualified oncology staff.

Some long-term negative effects have a high relative risk and may hence be known to science and hopefully also clinically. On the other hand, rarer and/or less severe effects may go undetected by patients and the healthcare system but nonetheless affect the survivor´s quality of life. Effective methods to detect such problems need to be further developed in relation to long term follow-up of survivors.

The key role of patient organizations

In diagnoses with a higher incidence and higher levels of survivorship, patient organizations are more and more actively pressing for engaging patients in the development of all parts of care, e.g. in the increased integration of care between specialists in oncology care and primary healthcare. Patient groups may also be successful in, for example via discussion fora or other means, detecting and handling (new) side-effects of their treatments. Regarding rarer cancer diagnoses, with their respective treatments, such patient movements are less powerful to successfully engage in change. The degree of patient empowerment and engagement is influenced by factors such as the size of the overall population in a country, language or cultural barriers and the level of overall health literacy. Patient movements and support organizations have so far been most prominent in North America, and European ones are gradually gaining in importance and visibility.

Electronic medical records accessible to both healthcare providers within a system and patients exist in some countries and make the sharing of information easier. These are still not commonplace, however, which renders information-sharing more challenging. Systems also vary between countries and regions due to data protection policies, practical organization and development levels of healthcare, where different institutions´ software tools may not “communicate” with each other, creating barriers to improvement of patient care.

Resources and constraints

Time and resource constraints are present in healthcare in most countries. How can we, despite this, achieve high quality in the long-term care of cancer patients?  Primary healthcare, if at all available, is often under strict time and economic pressure, how does this kind of care fit in and be supported to help manage after-care?

Risk-adapted care is important in order to use limited resources in a responsible way. To accomplish this, cooperation between patients, specialists from oncology with knowledge of possible risks from cancer treatments and organ specialists is essential. We need to form multidisciplinary teams around these patients.

Often in these situations, one can argue that the additional effort to provide comprehensive assessment and management as well as care coordination for patients with complex needs may result in further strain at the primary care level, even if these efforts may generate savings overall for the healthcare system or the society as a whole.

Moving forward to achieving sustainable, long-term aftercare with the ultimate goal of caring for former cancer patients living a good-quality life will require joint, forward-looking efforts by healthcare policymakers, medical professionals, patients (assumingly predominately through advocacy organizations), and other stakeholders.

Gathering the experiences from childhood cancers

Childhood cancer is the field where long-term aftercare efforts have developed the furthest and hence may serve as best practice for subgroups of cancers in adults with improving survival rates.   

The follow-up organization of childhood cancer survivors began in the United Kingdom (UK), where recommendations for long-term-follow up were published in 1995. The UK National Health Service (NHS), in the beginning of the 2000, established an organization for long-term follow-up of childhood cancer survivors.   

In North America, the first follow-up recommendations were published a few years later and have thereafter continuously been upgraded by the Children’s Oncology Group (COG). In Sweden, recommendations for long-term follow-up of childhood cancer survivors were developed in 2007 but were mainly known by paediatric oncologists. This resulted in reasonably good follow-up until the age of 18, when the patients were supposed to be incorporated into adult care. However, many complications develop later in adult life and are of many different types which could involve almost any medical specialist area. Long-term follow-up for childhood cancer survivors in adult care was at that point only existing in three of the six health care regions.

The Swedish Strategic Cancer Plan was published in 2009. It included five main goals, of which one was to increase the survival time and to improve the quality of life of cancer survivors. This presented a natural opportunity to write Swedish national guidelines on long-term follow up for childhood cancer survivors.  It included a cycle of referral to national societies of specialities and presumed user organizations. This has increased the awareness of this patient group in Swedish healthcare. Long-term follow-up clinics for adult survivors of childhood cancer are now in operation in five university hospitals in Sweden.

Examples from Sweden include: A “survivorship passport”, which includes a treatment summary and recommendations for follow-up, developed during the 1990s.  In 2012, a new part of the Swedish childhood cancer registry was launched, which included treatment summary data and the possibility to register recommendations for follow-up. The doctor responsible for the patient can give the patient and other caregivers a pdf-version of a personal survivorship passport from the registry.

The SIOP[1] Strategic Plan was published in 2015 by the European Network for Cancer Research in Children and Adolescents (ENC­CA), a network of excellence that was run from 2011 to 2015 under the EU 7th Framework Programme for Research and Innovation. In a subsequent Horizon 2020 project, there are seven objectives including: to improve the quality of survivorship; to address the consequences of cancer treatment such as long-term side-effects; to better understand the genetic background/risk of an individual; and to improve the quality of life of childhood cancer survivors.   

PanCare is a pan-European multidisciplinary network of health professionals, survivors of paediatric cancer and their families. Its goal is to reduce the frequency, severity and impact of late-treatment side-effects, with the aim of ensuring that every survivor of childhood cancer receives the best possible long-term care. The number of childhood cancer survivors is currently estimated to be more than 300 000 in Europe, a figure that is expected to rise to around 750 000 in 2030.

The Childhood Cancer Survivor Study, or CCSS, is a component of the Long-Term Follow-Up Study, which began in 1994 and is a collaborative, multi-institutional US study. The CCSS is coordinated through St. Jude Children's Research Hospital in Memphis, Tennessee. The study includes more than 35 000 childhood cancer survivors diagnosed between 1970 and 1999, and over 5 000 siblings of survivors who serve as the comparison group for the study.

The International Late Effects of Childhood Cancer Guideline Harmonization Group, IGHG, is a worldwide endeavour initiated by several national guideline groups and the Cochrane Childhood Cancer Group in partnership with the PanCareSurFup Consortium to collaborate in guideline development. The goal is to establish a common vision and integrated strategy for the surveillance of chronic health problems and subsequent cancers in childhood, adolescent, and young adult cancer survivors. So far, harmonized guidelines have been published in four different areas, and work is ongoing for many more.

[1] The International Society of Paediatric Oncology

Last modified: 2021-08-19