Cancer survivors: living longer, and now, better
2004; Elsevier BV; Volume: 364; Issue: 9452 Linguagem: Inglês
10.1016/s0140-6736(04)17601-0
ISSN1474-547X
Autores Tópico(s)Palliative Care and End-of-Life Issues
ResumoOver the past few decades, improvements in cancer diagnosis and treatment have produced a welcome result: the number of people surviving cancer has dramatically increased. In the USA alone, those living with cancer have tripled since 1971, and that number is increasing by 2% each year. Cancer, like several other serious diseases, is no longer an automatic death sentence. But that positive development has brought with it new problems that until now have gone largely undiscussed. Once the medical aspects of the disease itself have been dealt with, then what? Can patients just pick up the pieces of their life before cancer and carry on as if nothing had happened in the interim? New evidence suggests not.A recent survey of US cancer survivors by the Lance Armstrong Foundation (LAF) showed that half of them have continuing unmet needs. They reported that the non-medical aspects of having cancer, including depression and fear of recurrence, physical side-effects of treatment or secondary effects of disease (such as chronic pain, infertility, and sexual dysfunction), and financial worries and employment problems, often posed greater challenges than cancer itself. 43% reported decreased income, a quarter said they had incurred debt, and almost a third said they had faced demotion, lack of advancement, or even job loss as a result of their illness. These survivors also said they lacked resources for emotional needs, with most (78%) having not sought help from anyone who might have provided psychological or social support. Most worryingly, half the respondents said their oncologists either offered no support in dealing with the non-medical aspects of having cancer, or, though willing to discuss them, did not have enough information or experience to help.In response, the American Society of Clinical Oncology (ASCO) has formed a task force to improve care for cancer survivors. The task force will focus on several initiatives, including changes to the core curriculum for oncology trainees. A revised curriculum will address follow-up care, prevention of and screening for second cancers, and monitoring of short-term and long-term toxicity. Crucially, it will include psychosocial and employment issues, filling what is evidently a wide gap. Trainees will learn about best practices for informing and educating patients, and how to act as advocates. Preventing or delaying second cancers and recognising late effects of cancer treatment will be emphasised. New clinical practice guidelines focusing on related issues will be developed. Other areas of the task force's work include identifying new research needs, and issues specific to survivors of childhood cancer.The US Centers for Disease Control and Prevention has also collaborated with the LAF on a national action plan for cancer survivors, using a public-health approach. The plan recommends ten strategies to address survivors' needs, emphasising evaluation, research, education, and policy. Unfortunately, some of these goals sound mind-numbingly bureaucratic and are replete with mysterious marketing jargon, such as “develop, test, maintain, and promote patient navigation systems that can facilitate optimum care for cancer survivors”.Not sure what a patient navigation system is? It is a programme involving “health professionals and highly trained patient liaison representatives”, otherwise known as the “navigators”. Apparently, these programmes can be developed and maintained only if they “promote universal input and buy-in by having patient navigation systems co-branded and co-owned by all appropriate organizations”. Is that clear to you? What is clear to us is that nonsensical verbiage like this will do very little to help cancer survivors.The ASCO task force is on the right track, especially in changing the curriculum for oncologists. Doctors need to ask specific questions about the emotional, psychological, and social issues of cancer survivors. The goal is not necessarily to be the one who can fix all those problems, but, as in any clinical setting, to provide support and referral to those who can. This simple strategy would go a long away towards ensuring that cancer survivors do not slip through the cracks. As Julia Rowland, director of the US National Institutes of Health Office of Cancer Survivorship, has said, “It's not enough to say there are problems; tell us what you're going to do about them”. Many of the unmet needs of cancer survivors are related to ordinary challenges of living, albeit after extraordinary circumstances. What is new is that so many patients with cancer are able to turn their attention to these matters, instead of the stark issues of life and death. So let us have some plain-language, common-sense strategies to address them.And what of those who are not lucky enough to have the problem of survivorship? In many areas of the world, a life after cancer is not even on the radar screen. But instead of viewing survivorship as a problem to be faced far down the road, why not take a lesson from this gaping hole in care, and institute changes in education, training, and policy now?Contemporary cancer care is saving unprecedented numbers of lives. Now is the time to translate that same high level of care into a correspondingly high quality of life. Over the past few decades, improvements in cancer diagnosis and treatment have produced a welcome result: the number of people surviving cancer has dramatically increased. In the USA alone, those living with cancer have tripled since 1971, and that number is increasing by 2% each year. Cancer, like several other serious diseases, is no longer an automatic death sentence. But that positive development has brought with it new problems that until now have gone largely undiscussed. Once the medical aspects of the disease itself have been dealt with, then what? Can patients just pick up the pieces of their life before cancer and carry on as if nothing had happened in the interim? New evidence suggests not. A recent survey of US cancer survivors by the Lance Armstrong Foundation (LAF) showed that half of them have continuing unmet needs. They reported that the non-medical aspects of having cancer, including depression and fear of recurrence, physical side-effects of treatment or secondary effects of disease (such as chronic pain, infertility, and sexual dysfunction), and financial worries and employment problems, often posed greater challenges than cancer itself. 43% reported decreased income, a quarter said they had incurred debt, and almost a third said they had faced demotion, lack of advancement, or even job loss as a result of their illness. These survivors also said they lacked resources for emotional needs, with most (78%) having not sought help from anyone who might have provided psychological or social support. Most worryingly, half the respondents said their oncologists either offered no support in dealing with the non-medical aspects of having cancer, or, though willing to discuss them, did not have enough information or experience to help. In response, the American Society of Clinical Oncology (ASCO) has formed a task force to improve care for cancer survivors. The task force will focus on several initiatives, including changes to the core curriculum for oncology trainees. A revised curriculum will address follow-up care, prevention of and screening for second cancers, and monitoring of short-term and long-term toxicity. Crucially, it will include psychosocial and employment issues, filling what is evidently a wide gap. Trainees will learn about best practices for informing and educating patients, and how to act as advocates. Preventing or delaying second cancers and recognising late effects of cancer treatment will be emphasised. New clinical practice guidelines focusing on related issues will be developed. Other areas of the task force's work include identifying new research needs, and issues specific to survivors of childhood cancer. The US Centers for Disease Control and Prevention has also collaborated with the LAF on a national action plan for cancer survivors, using a public-health approach. The plan recommends ten strategies to address survivors' needs, emphasising evaluation, research, education, and policy. Unfortunately, some of these goals sound mind-numbingly bureaucratic and are replete with mysterious marketing jargon, such as “develop, test, maintain, and promote patient navigation systems that can facilitate optimum care for cancer survivors”. Not sure what a patient navigation system is? It is a programme involving “health professionals and highly trained patient liaison representatives”, otherwise known as the “navigators”. Apparently, these programmes can be developed and maintained only if they “promote universal input and buy-in by having patient navigation systems co-branded and co-owned by all appropriate organizations”. Is that clear to you? What is clear to us is that nonsensical verbiage like this will do very little to help cancer survivors. The ASCO task force is on the right track, especially in changing the curriculum for oncologists. Doctors need to ask specific questions about the emotional, psychological, and social issues of cancer survivors. The goal is not necessarily to be the one who can fix all those problems, but, as in any clinical setting, to provide support and referral to those who can. This simple strategy would go a long away towards ensuring that cancer survivors do not slip through the cracks. As Julia Rowland, director of the US National Institutes of Health Office of Cancer Survivorship, has said, “It's not enough to say there are problems; tell us what you're going to do about them”. Many of the unmet needs of cancer survivors are related to ordinary challenges of living, albeit after extraordinary circumstances. What is new is that so many patients with cancer are able to turn their attention to these matters, instead of the stark issues of life and death. So let us have some plain-language, common-sense strategies to address them. And what of those who are not lucky enough to have the problem of survivorship? In many areas of the world, a life after cancer is not even on the radar screen. But instead of viewing survivorship as a problem to be faced far down the road, why not take a lesson from this gaping hole in care, and institute changes in education, training, and policy now? Contemporary cancer care is saving unprecedented numbers of lives. Now is the time to translate that same high level of care into a correspondingly high quality of life.
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