ARTICLE ORIGINAL /ORIGINAL ARTICLE DOSSIER
Distress, the 6
thvital sign in cancer care
Caring for patients
’emotional needs: what does this mean and what helps?
La détresse, sixième signe vital dans les soins du cancer
Être attentif aux besoins émotionnels des patients : qu’est-ce que ça veut dire et qu’est-ce qui est utile ?
M. Watson · B.D. Bultz
Received 25 June 2010 Accepted 28 June 2010
© Springer-Verlag France 2010
AbstractDistress has been endorsed as the 6thVital Sign by the International Psycho-Oncology Society (IPOS) in 2009 with Screening for Distress as a proposed IPOS strategy in 2010. The need for skilled psychological care is well- recognized as a necessary, integral part of oncology care.
There has been significant development of this field over the last two decades in the area now commonly labelled
“psycho-oncology”. Given the advances in psycho-oncology, it is helpful to overview the approaches to provision of psychological care, so we can better understand how to care for the emotional needs of cancer patients, their partners and families. The focus here is on patients with high and enduring levels of need in terms of emotional functioning and the formal therapies that are available to help patients and their families manage these needs.
KeywordsCancer · Oncology · Psychological care · Intervention · Services
RésuméLa détresse psychologique a été inscrite comme le sixième signe vital par la Société internationale de psycho-
oncologie (IPOS) en 2009 dans le dépistage de la détresse psychologique proposé par l’IPOS pour sa stratégie en 2010.
La nécessité d’un soin psychologique spécialisé est mainte- nant bien reconnue comme part intégrale et nécessaire du traitement oncologique. Il y a un développement significatif de ce champ depuis une vingtaine d’années, dans le domaine de ce qu’on appelle communément la « psycho-oncologie ».
Étant données les avancées de la psycho-oncologie, il est utile de faire le tour de toutes les approches pour prendre les dispositions nécessaires afin de s’assurer du soin psychi- que, de façon à mieux comprendre comment prendre soin des besoins émotionnels des patients, de leurs partenaires et de leur famille. L’objectif de cet article est de montrer quelles sont les psychothérapies formalisées et validées qui peuvent être proposées pour répondre aux besoins des patients présentant un degré élevé de détresse émotionnelle.
Mots clésCancer · Oncologie · Soin psychologique · Intervention · Services
Background
The Role of Screening for Distress
Distress has been endorsed as the 6th Vital Sign by the International Psycho-Oncology Society (IPOS) following several publications [2–6,14,28]. In 2010, IPOS in its strate- gic plan agreed that“Screening for Distress”be incorporated as one of its five top directions for the next several years.
Cancer is not a static disease. Patients’biomedical status changes as a result of disease progression, surgical, systemic and radiation therapies. Impact of cancer and its treatment is likely to create changes in one’s psychological, functional and physical being. Given that we are situating
M. Watson (*)
Psychological Medicine Service, The Royal Marsden Hospital, UK e-mail : maggie.watson@rmh.nhs.uk Institute of Cancer Research, UK University College London, UK B.D. Bultz (*)
Dept. of Psychosocial Resources, Tom Baker Cancer Centre, Alberta Health Services e-mail : bdbultz@ucalgary.ca
Dept. of Oncology, University of Calgary DOI 10.1007/s11839-010-0269-z
psychological care within an oncology setting, it is important to realize that many patient concerns may be a result of the cancer diagnosis as well as of its treatment. To ensure that psychosocial professionals are being called upon to treat the right patient in a timely way, as professionals we may need to guide the process of whole patient care in a more active way. Researches by Fallowfield [12], Pirl [25], Vodermaier [29] and Mitchell [18] clearly suggest that cancer care providers rely on clinical acumen rather that standardized screening to better understand the patient experience. By so doing, the likelihood of clinical error is high [12].
Psycho-oncology has increasingly recognized the challenges patients experienced because of this casual approach to understanding the patients’ needs. As a first step, the National Comprehensive Cancer Network [21] is strongly advocating that Screening for Distress be undertaken as a standard of clinical practice. The Institute of Medicine [15]
too is advocating that cancer treatment is more than about biomedical practice but about whole patient care. Given these directives, we are seeing an international move to include Screening for Distress as part of cancer care. In Canada, a government funded program (Canadian Partner- ship against Cancer) has stated that Screening for Distress, the 6thVital Sign [2], is a priority area of development [7].
As a result, a national working group has been formed with the focus being to work with Canadian provincial cancer programs to implement Screening for Distress as a standard of cancer practice. Having Canada’s hospital accreditation [1] linked to distress as a vital sign, which requires routine monitoring, goes one step further in assuring that patients will be appropriately screened, referred, assessed and treated by the right professional using best practice models in psychosocial care. Repeated screening (at a minimum, pre- and post-treatment) will assure desired outcomes are being worked on and achieved.
All people with cancer will find their experiences following diagnosis to be emotionally challenging, so there is recognition, by cancer professionals, that patients need emotional, informational and social support as they navigate their way through the cancer experience. For a minority, additional professional care may be needed to help them cope better with their cancer diagnosis, treatment and prognosis. The rates of more serious psychological problems in cancer patients are well documented, although the figures vary significantly depending on which emotional symptoms are assessed, when assessed and what criteria for clinically significant symptoms are applied [8,10,31].
It has been important to avoid pathologizing the emotional response of cancer patients; it is not always appropriate to borrow nosology and interventions from mainstream psychiatry. Rather, the majority of cancer patients may be individuals with little evidence of prior mental illness who find themselves in a difficult and challenging situation requir-
ing support and resources above and beyond the normal demands of life prior to cancer. The challenge is how to make professional care accessible to those who might bene- fit, without drawing them into a model of pathology. A move away from traditional psychiatric models and terminology towards a cancer appropriate professional language will help.
This suggests a need to define emotional needs and care in cancer patient cohorts and to limit the extent to which we talk about diagnosing and pathologizing their emotional pro- blems. Therefore, the provision of a tailored psychological care system for cancer patients is the goal. Recognizing distress as the 6th Vital Sign provides a strong and clear endorsement that cancer care includes the broader psycho- social needs of patients and families. More recently the IPOS has proposed that access to psychosocial care be considered a human right.
What is meant by
“caring for patients
’emotional needs”?
“Caring” is often loosely conceptualised by the caring/
mental health professions. There are many levels of care for emotional needs. However, there has been a movement to bring “care”into a more professional and evidence-based realm. Progress in the area of psycho-oncology over the last two decades is evidence that “professional caring” is something different from the more everyday concept of care.
Among psycho-oncology professionals, there has been a gradual shift to recognizing and promoting the need for skilled care which goes beyond the everyday concept of care. Just as there are some patients who have more complex needs, so there are more complex methods of supporting these needs. The outcome of this shift is seen in the increas- ing number of studies and reviews of “psychosocial inter- vention” –the psychological and psychiatric methods used to“treat”cancer patients with complex psychosocial needs.
This treatment ethos has been embedded in mainstream psychiatry and psychology. In the past, we have borrowed from mainstream treatment models and diagnostic criteria but these have evolved to tailored therapies for cancer patients and the need to develop interventions that meet the specific needs of patients with a serious life-threatening medical disorder rather than a mental illness.
What is a psychological intervention?
A recent review by Hodges et al. [13] highlights the lack of explicit definitions in the literature of what constitutes a psychological intervention. Their meta-analysis of 66 relevant reviews concluded that clear definitions were often absent
and there is a lack of consistency between reviews in how the term intervention is used.
Here, we propose a definition that is appropriate to cancer patients. In this respect, a psychological intervention is a formal evidence-based therapy with a clear theoretical basis and well defined techniques developed for, or adapted to, the specific requirements of cancer patients and their families. A formal psychological intervention approach needs to include associated guidelines, preferably be manua- lised, and should provide recommendations on who delivers the therapy and what level of skill is required to do this to the highest possible standard. Importantly, the intervention will have been developed for cancer patients and/or their families/partners and the evaluations of efficacy will be based on use within this medical cohort.
In this respect, we do not discount the many informal support programs, informational and social support agencies/networks developed for cancer patients, many of which have their advent in the charitable sector and likely provide important support; rather we are attempting to define what constitutes a“therapy”. Nor do we in anyway discount therapeutic approaches developed for other patient or client groups. In this respect, the remainder of this article focuses on formal psychological therapies that have been provided for cancer patients and their families by qualified professionals to help meet their psychosocial and/or emotional needs.
Evidence of efficacy
There have been quite a number of reviews of psychological therapies for cancer patients and their families [17,23], and an emphasis recently on the idea that one size does not fit all [20,32]. The need to continue to collect evidence using the randomized clinical trial methodology remains an important goal. There will be increasing pressure to conduct and report outcome studies using well-defined criteria as described by the Consolidated Standards of Reporting Trials (CONSORT) statement [19]. The National Cancer Research Institute’s report on Supportive and Palliative Care Research in the UK [27] highlighted among its conclusions a“major lack of consensus on which outcome measure is most appropriate for particular situations”. This lack of consensus is holding the field back. It makes systematic reviews very difficult.
Ellwood et al. [11] have argued for consideration of an
‘“empirically supported treatment” (ESP) approach with a distinction between efficacy research and effectiveness research, and the need to consider how evidence is obtained.
There is still a need to clarify, as they point out, what works for which type of cancer patient, which problem and when in the cancer trajectory it works. For psycho-oncologists, the challenge is how to produce a coherent and convincing
body of evidence to support the implementation of tailored psychological therapies for cancer patients and their families. We are not there yet.
What therapies do we have?
The IPOS recently produced a set of online lectures (see http://www.ipos-society.org/professionals/meetings-ed/
ed-online-lectures.htm) on a range of topics including psychological intervention. These lectures are available in a number of languages including French.* IPOS is also producing a therapies manual which sets out a compendium of therapies that have been used with cancer patients and their families [30]. The scope of the IPOS compendium is broad but does not claim to cover every possible therapy. In a number of cases, the therapies described are fully manua- lised. No doubt these approaches may be adapted or added to as the psycho-oncology field develops.
Therapies that have been adapted for use with cancer patients and their families include: cognitive behavioural therapies, supportive–expressive, meaning-centred psycho- therapy, psycho-educational intervention, family-focussed grief therapy, guided writing, narrative therapy, mindfulness- based therapy, reconstructing meaning and cognitive-analytic therapy. Other approaches have focussed on specific problems or groups of patients, such as sexual dysfunction, therapy with paediatric patients, intimacy-enhancing therapy, therapy for families at genetic risk and therapy for families where a parent has cancer, as well as programs aimed at the special needs of the elderly.
In the UK, there has been a strong tradition of focussing on the cognitive behavioural therapies. More recently, the UK National Institute for Health and Clinical Excellence (NICE) review of Depression in Adults with Chronic Health Problems [22] recommended the use of group CBT, individual CBT and computer-delivered CCBT. The review concluded that “... the most substantial evidence base (for moderate to severe depression) is for CBT”(Section 7.5).
This is the treatment of choice for depression in patients with chronic health problems, given the weight of evidence on efficacy. There is also an increasing evidence base for the use of supportive–expressive and Mindfulness-Based Cognitive Therapy (MBCT) and Mindfulness-Based Stress Reduction (MBSR) [16]. We are at an exciting point in psycho-oncology as we move away from traditional psychi- atric models and develop and evaluate new tailored therapies for people with cancer.
What are the financial costs?
There has been little emphasis until recently on the costs of therapies for cancer patients. In many instances, cancer
treatment services are under increasing pressure to try to limit the costs of oncology treatments as new and expensive drugs are developed. While the cost of psychological thera- pies may be small by comparison to cancer drugs, there will be an increasing need to assess cost-benefits and justify psychological care on health economic grounds. Fortunately, several psychosocial studies and meta-analyses have demon- strated an overall 20% reduction in healthcare costs [9,24].
While there are only a limited number of cancer specific studies, Simpson et al. [26] found that in a randomized controlled study, a brief group psycho-educational interven- tion for breast cancer patients, which saved the health care system $311.90 CAD (on average) when compared to a wait-list control group. The findings of psychosocial benefit to the patient and cost savings to the care system are worthy of attention.
Summary
This overview shows that there exist a number of psycholog- ical therapies which are strongly theoretically derived.
However, evidence on efficacy is still fraught with problems as professionals in psycho-oncology continue to struggle to produce trials using the standards required and accepted elsewhere in oncology. Progress will require a shift in the way we do research which will likely mean a move to the style of large clinical cooperative groups oncologists have already formed. Strategies will be needed to help consolidate collaborative structures for collecting efficacy and health economic data which support our arguments in favour of provision. For patients, there is a need to ensure they are offered the most effective psychological care and are protected from therapies that may provide either little benefit or may cause harm.
Acknowledgements *The translation of the IPOS online lectures was made possible by a grant from the European School of Oncology.
Conflict of interest statementThe authors declare that they do not have any conflict of interest.
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