The Development of Clinical Practice Guidelines for Psychosocial
Oncology: Actions and Reflections Leading to the Formation of a
National Collaborative Approach
Joanne Stephen, PhD, Researcher, Provincial Rehabilitation Network, BC Cancer Agency
Michael Boyle, MSW, RSW, Clinical Practice Leader, Provincial Rehabilitation Network, BC Cancer
Agency
1. Introduction
The evidence-based clinical practice guideline (CPG) movement within oncology, as
in other health fields, represents a trend in identifying best practices and standardizing
treatments. Within psychosocial oncology, evidence-based CPG’s are also considered as
a tool to increase awareness of the important and too-often unmet psychosocial needs of
cancer patients, as well as to address the challenges and barriers currently experienced by
practitioners in delivering consistent psychosocial care. To date, in Canada, there are no
completed psychosocial oncology practice guidelines. In 2003, funding was made
available by the BC Cancer Agency and the BC Cancer Foundation to initiate a provincewide working group to begin the work of developing guidelines for psychosocial care.
This report describes the process and conclusions of this group prior to developing the
first CPG’s.
2. History: The Canadian Strategy for Cancer Control and the Ottawa Conference
Prior to launching the initiative, the authors and a member of the workgroup
participated in a national conference on CPG’s, hosted by the Canadian Strategy for
Cancer Control (CSCC) and Health Canada.1
During the meeting, presentations were made by international and national oncology
professionals, patient advocates and policy makers who articulated the importance of
evidence-based, national standards of practice and the utility of guidelines as decisionaids for health professionals. The reasons cited for using CPG’s as decision aides
included inappropriate variation in clinical practice patterns, dwindling resources for high
quality care and the challenge of translating new research evidence into clinical practice.2
Practical methods and tools for developing evidence summaries and reports were
shared, as well as outcomes from groups currently involved in developing CPG’s.
Facilitated workgroups were held for each major tumor site, as well as Palliative Care
and Supportive Care. Participants worked by consensus to identify issues and a plan of
action. On the last day proceedings and plans were shared with everyone present.
A recurring discussion thread throughout the meeting was the practical challenges
and obstacles to CPG development and uptake. We learned that the development process
is more arduous than developers tended to expect. For instance, on average, it takes about
2 years from point of development to uptake of a single CPG. The work is often done by
clinicians who volunteer their time while managing busy clinical practices. Some of those
involved in the work reported burnout and frustration at the seemingly small payback (in
terms of improvements in clinical practice) weighed against the amount of energy
required to produce a single empirically rigorous CPG.
A speaker from France shared the experience of the SOR (Standards, Options,
Recommendations), a National clinical practice guideline program.3 This program
appears to have been very successful in terms of implementation and improving practice,
but at tremendous organizational effort and cost. Regional Health Authorities in France
also provided infrastructure and financial supports for the project. In the context of the
enormity of the task of successful implementation and population-level improvement, the
CSCC message was clear: in order to produce CPG’s of high quality that have optimal
impact, a well-financed, coordinated, collaborative national effort is required.
While much was learned from the meeting, we found the discussions around practical
challenges and implementation to be particularly thought-provoking. Of value was the
model of the “CPG lifecycle” which provides a conceptual tool or framework that
addresses some of the practical challenges.2 The framework draws attention to the
importance of creating linkages between the development and implementation phases; it
recommends ‘bottom-up’ as well as ‘top-down’ strategies; and integrating the input of
expert consensus and clinical experience as well as experimental research. These
strategies were recommended as a means of creating ‘buy-in’ from the clinicians who
would eventually be using the guidelines, as well as ensuring that the guidelines would be
relevant.
The following were the most salient messages for us:
1)
Clinical Practice Guideline development is important work that is very
resource-intensive, being both costly and lengthy. Before undertaking the
commitment, it is worth thinking it through and getting it right the first
time.
2)
National collaboration for resource-sharing (human and financial) is most
desirable.
3)
The issues involved in dissemination and uptake of CPG’s are critically
important if the intent is to improve clinical practice. Beginning a
collaborative process with those who would be involved in the delivery of
care -- getting grass roots support and input while still in the development
phase -- seems likely to pay off in the long run.
In short, the Ottawa conference sensitized us to the complexity of the
organizational and consensus-building aspects of developing CPG’s collaboratively, and
the potential pitfalls of not attending to the broader issues. It also raised another
awareness for us: the prescribed approach is based on a reductionist model which might
be problematic for developing psychosocial CPG’s. Specifically, the recommended
methodology is geared for evaluating experimental research, which in turn is framed to
answer highly specific questions. Yet there are important difference between
psychosocial and medical treatments in cancer is level of specificity.
Medical CPG’s have been organized around disease sites, and answer the question
“which particular treatment is most effective for which particular symptom”. Answers are
highly specific and a massive research enterprise is able to support this level of
specificity. While there is an experimental literature addressing “which specific
psychosocial treatment for which specific problem/patient/disease”, the bulk of our
research base is not. Psychosocial “symptoms” are, for the large part, non-specific to
disease-site, pervasive in terms of disease stage, and are contextually rather than
organically determined. Some effective “treatments” are very general including
reassurance, empathy, and focused listening. In short, our smallest ‘unit of analysis’ is the
individual person in context. Our concern was that the medical approach of seeking evergreater levels of specificity, while successful in medicine, might not be the best approach
to defining psychosocial symptoms and effective treatments. Might other countries have
adopted more molecular approaches to developing CPG’s?
The decision was made to begin by identifying a group of practitioners from
diverse oncology settings (i.e. rural/urban, Cancer Center and community hospital) who
were willing to volunteer time and take part in a provincial workgroup to critically
examine the issues and identify priorities with regard to the development of psychosocial
CPG’s. A proposal for funding a pilot project to study CPG development was
successfully submitted by the chair enabling the project to commence.
3. Procedure/Methods:
A provincial workgroup was formed composed of 11 psycho-social oncology
clinicians (including medical Social Workers and clinical counselors from both the
Provincial Cancer Centres and Community Oncology teams throughout all regions of
B.C) and a Research Consultant. The first task of the workgroup was to develop an
approach to CPG development using Browman’s model as a guide.
The first step recommended by the model is the selection and framing of the clinical
practice guideline problem. We took a 2-pronged approach to this: 1) we debated the
pressing clinical problems and issues as perceived by clinicians in community and Cancer
Center settings to identify priority problems, and 2) we educated ourselves more broadly
about the guideline process, and other guideline products and approaches. Research
articles and CPG documents were circulated to the workgroup members over a 6-month
period. Monthly 2-hour long semi-structured teleconferences, and 1 full-day meeting was
held, in which participants engaged in dialogue and debate about the perceived strengths,
weaknesses and relevancies of the different approaches to CPG development.
To identify relevant documents and information for discussion, the research
consultant used MEDLINE (1990-2003), CINAHL (1990-2003) and the internet, using
keywords ‘practice guidelines’; ‘psycho oncology’; ‘psychosocial oncology’. She
conducted electronic searches in each provincial Cancer Agency, seeking ‘clinical
management guidelines’ or ‘clinical practice guidelines’ to identify all Canadian CPG
work in Supportive Care. Individuals involved in relevant CPG initiatives were contacted
and interviewed, and the discussions were shared with the workgroup. The Chair
additionally made contacts with spokespeople from international psychosocial oncology
groups, where they existed, to enquire about their progress and retrospective learning in
developing practice guidelines. The intent was to sample perspectives and to benefit from
the perspective and experience of those further along the path prior to committing
ourselves to a course of action.
4. Findings:
The outcomes of this enquiry have been organized in the following way: a) clinical
consensus on priorities and practical challenges in BC Psychosocial Oncology practice
settings, and b) overview of relevant Canadian and international CPG work.
Key patient needs and provider challenges/ barriers as identified by workgroup
Browman recommends that guideline groups consider practical criteria such as
prevalence of symptoms/conditions; extent of burden and costs associated with treatment
options, as well as likelihood that a guideline will be effective in influencing practice, in
determining topic priority.2 The purpose of bringing practitioners from diverse practice
settings into the workgroup was to bring a variety of experiences and perspectives to
these issues. If practice guidelines are not perceived as relevant to practitioners, they are
less likely to be implemented.2
Regardless of practice setting, the oncology clinicians agreed upon a list of the most
prevalent problems. These were grouped into three areas:
1)
Acute Distress as a consequence of diagnosis included: anxiety, stress, feeling
overwhelmed and unable to cope, depression, hopelessness, stress in family,
worry about family members, especially children and partners; fear of death,
stress and burden of family caregivers, feelings of guilt and self-blame, and
worry about treatment decisions.
2)
Chronic Distress associated with survivorship issues included: fear of
recurrence; loss of old self/old life; uncertainty about creating new life; feeling
isolated and estranged from old communities; marital difficulties; employment
difficulties; financial problems, in other words, loss and adjustment.
3)
“Health System Distress” more often observed by the community clinicians,
included patients being burdened by the lack of communication between acute
care hospitals, specialists and general practitioners; repeated tests and long
waits. Once acute treatment was over, patients were distressed by lack of a
care plan and uncertainty about who their primary doctor was.
Browman recommends the input of community practitioner’s and a consideration
of the practical issues that are likely to impact on implementation.2 Concerns about
relevance and access were identified as the biggest challenges to successful
implementation. More specifically:
1) Budget cuts have so decreased the number of social worker and other health
professional hours that patients in rural areas do not have access to even minimal
professional psychosocial support. Psychiatric consultation is unavailable in most
community settings. In many communities, there are no supportive resources to
refer patients to. The concern was raised: how relevant will guidelines regarding
specialized services be if those services don’t exist? Given the limited resources,
do we want to spend them on developing guidelines that can be used only in
regional Cancer Centres?
2) Access is an issue even when patients live within the catchments of Cancer
Centres, where psychosocial treatments are available. Clinical counselors are
increasingly challenged to provide more efficient ways of delivering services, and
patients face barriers to receiving psychosocial services, such as long drives and
childcare obligations that are surmounted for life-saving medical treatments but
not necessarily quality-of-life psychosocial treatments. For many patients,
psychosocial care is unfeasible. Increasingly counselors are willing to use
telephones and other forms of technology to increase access, even as research
evidence is just beginning to accumulate. The concern was raised: what will be
the impact of recommending more costly, proven treatments over ones that meet
other clinical and practical priorities but do not yet have the research evidence?
Will research evidence always be given first priority?
In summary, the group agreed on distress as being the most prevalent and
burdensome problem but chose not to reduce or specify the clinical problem further.
Distress crosses disease type, tumor, stage of illness; as well as age, gender, sociocultural/ethnic and other variables. The group concluded that an appropriate level of
specificity would be “distress along the cancer continuum”, and that a framework based
on a model such as “the clinical Courses of Cancer”– a model that captures cancer
patient’s distress along specific critical points in the cancer continuum -- would be
preferred.4 Furthermore, it was concluded that the needs of communities as well as
Cancer Centres were to be incorporated. Balancing clinical and practical considerations
with research considerations was concluded as being essential for the development of
meaningful and useful CPG’s. No specific consideration should override another.
Overview of other approaches
Relevant Canadian CPG work. At the time of the enquiry, only the Ontario
Supportive Care CPG group and the BC Palliative Care CPG group were in the
process of developing supportive care guidelines. In Ontario, the Supportive Care
group had 7 guidelines in progress, 1 of which was on the diagnosis and management
of depression.4 No documents had been produced at the time of searching; the
Depression workgroup were reportedly still at the early stage of developing a search
strategy. The BC Palliative Care CPG group had undertaken the development of a
CPG on dyspnea, and had produced a document, ‘A Systematic Review and Critical
Appraisal of the Evidence on Oxygen and Airflow Effect on Dyspnea at rest in
Palliative Patients’.5 The eventual outcome of their critical review was that the state
of evidence was insufficient to warrant a guideline, and they concluded with a
recommendation for additional research.
Interviews with key informants (leaders of the 2 CPG workgroups) revealed the
advantages of adopting their methodological approaches. In Ontario, CPG
development was a well-organized and well-funded effort, and all workgroups were
required to adopt the endorsed approach (which is consistent with the medical
model). Of all symptoms experienced by patients, depression is one that has an
advanced research literature supporting specific treatments, and so the fit was good.
The Palliative Care CPG group chose to use the Cochrane methodology to guide their
approach. The benefit of following this methodology is that the review eventually
becomes banked within the Cochrane Collection, and from there, becomes
disseminated internationally and periodically updated by another organization.
Thus on the one hand there were good research and practical reasons for adopting
the research approach, and the outcomes were rigorous and evidence-based.
However, on the other hand, the yield in terms of impact on priority problems, as
defined by our group, seemed modest for the amount of resources and commitment
required. This group rejected the idea of spending several years developing a single
CPG that addressed only one single clinical symptom.
The International Psychosocial Oncology approaches. Review of literature
and internet search revealed that only the U.S and Australia have developed, and are
in the process of implementing, oncology-specific psychosocial guidelines.6 In
comparison to the Canadian CPG work, which was highly specific in scope, the
international approaches were comprehensive.
The U.S. work, “Distress Management NCCN Practice Guidelines Version
1.2001”, adopted a symptom approach, following the approach developed by the
National Comprehensive Cancer Network (NCCN).7 Standards of Care, developed
earlier, identified the major psychosocial/ psychiatric/ spiritual sources of distress for
cancer patients. The conceptual model of “distress management” was used as a
framework. The approach essentially describes a continuum from normal cancer
distress to greater degrees of psychosocial suffering and disability.8 9
The guideline document we viewed was further ‘downstream’ from the
evidence-summary: there was no explanatory text or reference to research. A distress
screening tool is recommended for all new patients, and screening to be repeated at
intervals. After that, the document essentially describes an algorithm of “which
symptoms are referred to whom”. The evidence regarding treatment is not described,
rather, individual practitioners are referred to their respective professional colleges
(i.e. Social Work, Psychiatry, Psychology) that monitor practice.
The U.S. CPG was reportedly developed with the explicit purpose of
educating health professionals and patients about the psychosocial impact of cancer,
and advocating for evidence-based care for psychosocial needs.9 Thus the standards
and guidelines serve an education/advocacy function, and offer a decision tree for
referral but not a decision tree for specific treatments (though this could reduce
variation in practice and help practitioners synthesize new research, which is
desirable).
The Australian work, “Psychosocial clinical practice guidelines: information,
support and counseling for women with breast cancer” was prepared by a national
working group and issued by the National Health and Medical Research Council of
Australia.10 The approach is national, interdisciplinary and broad in scope. In contrast
to the Canadian and US documents, it is lengthy (120 pages) and highly informative
composed of 1) an introduction describing the psychosocial impact of breast cancer
and benefit of psychosocial intervention, 2) a series of reviews about the clinical
issues surrounding appropriate provision of information and support at various stages
of the cancer trajectory; and 3) concise step-by-step guides detailing the skillful
provision of information and support, including general interaction skills, how to
deliver news about diagnosis or recurrence, and how to ask about various
psychosocial problems. The text is reader-friendly and levels of evidence for each
claim are cited throughout, so the reader can determine the degree of empirical
support for each recommendation.
Although there is a good deal of research evidence regarding the effectiveness
of different psychosocial interventions, it appears that the primary target of the
Australian work is the medical oncology team who have tremendous opportunity to
intervene in ways that will minimize or even prevent distress. Some of the strengths
of the Australian work were its interdisciplinary focus, its outcome orientation and its
incorporation of patients’ and clinicians’ needs.
In summary, compared to the comprehensive approach adopted by both
Australia and the US, the Canadian approach was research-focused than clinical
practice oriented. Compared to the other documents which fulfilled a broader
educational and advocacy function, the Canadian documents were highly scientific. In
our estimation, the former were more ambitious products, addressing the larger
priorities identified by clinicians and patients and other stakeholders who had been
involved in steering committees directing the work.
6. Evaluation and interpretation of information
In summary, the team reviewed papers and heard from informants regarding four
different guideline initiatives. Patient needs and salient barriers were discussed at length.
The workgroup evaluated the approaches in light of their concerns and came to the
following consensus:
The U.S. and Australian approaches produced documents and recommendations
that were able to address the breadth of problems experienced by cancer patients. Both
approaches were judged to be of high quality in terms of clinical relevance and scientific
credibility. The group particularly valued the comprehensive and practical nature of the
Australian work, and the attention to dissemination and uptake of the American work.
However, neither approach mirrored the realities of Canadian oncology practice: the U.S.
decision tree for referral does not reflect Canadian practice patterns (e.g. Social Workers
in Canada deal with psychotherapeutic issues as well as practical problems) and the
Australian guidelines for multi-disciplinary teams do not reflect the organization of teams
in Canada.
The two Canadian approaches, in contrast, were seen as too research-focused and
didn’t address the larger issues regarding uptake and access. Further, while
acknowledging the value of the rigor, the group rejected the specificity of the singlesymptom approach. It was thought that the limitation of adopting a highly rigorous and
specific approach is that the work is very slow, and the broader issues of educating and
advocating are not well-addressed one symptom at a time.
The opinion of the group was that clinicians from all disciplines needed
guidelines that addressed the range of issues most problematic for patients, even though
many of these issues have not yet been framed into specific treatment questions
answerable through experimental research. While the workgroup agreed that guidelines
needed to be evidence-based and not simply consensus-based, it was felt that the singlesymptom/single treatment approach would be too constraining and would not serve the
broader objectives of CPG development in B.C. or Canada.
7. Conclusion
Evidence-based guidelines need to be developed within, or linked to, a broader
framework which describes and maps out the specific distresses experienced by patients
along the continuum of the cancer experience. The ‘clinical courses of cancer model’ is
one schema with good potential.11 Specific guidelines for Psychosocial professionals
recommending effective treatments need to be written, as do guidelines for other health
professionals on how to prevent or proactively minimize distresses that arise during
primary and surgical care. These guidelines could be used to reduce variation in practice,
to help practitioners synthesize new research evidence, and as decision-aids and skillenhancing tools for clinicians. In addition, documents could be adapted as a tool for
heightening awareness of the psychosocial impact of cancer and the effective
interventions for patients and administrators.
8. Phases of CPG development and a National Initiative
Phase I –
This work was completed in BC and reported in this document. Arising from this work in
BC, it became clear that the next step would be the formation of a National CPG
Initiative. The BC Cancer Foundation has generously allocated dollars to support these
next phases of the project. The Canadian Association of Psychosocial Oncology (CAPO)
has officially endorsed CPG development, and provided additional financial support.
Phase II –
Gaining national endorsement regarding the distress/continuum approach, a particular
‘continuum framework’ that would function as an organizational structure for specific
CPG’s, and common approaches to evidence-gathering and clinician involvement
comprise the work of Phase II.
This will first involve establishing formal linkages with colleagues who have already
undertaken some work (e.g. in Nova Scotia) or have expressed strong interest in
participating in CPG development, and gaining input from CAPO through a national
taskforce. Discussion would follow in order to develop consensus regarding the
framework and strategies. The BC group identified one potential framework, and strongly
recommended that wherever possible, evidence summaries be adopted and endorsed
rather than duplicated. The Australian work in particular is both rigorous and extensive
and much could be adopted and reworked to a continuum framework. Other review
summaries have been developed and findings could be integrated. This strategy would be
time and cost effective. As well, BC recommends the development of local workgroups
based in community as well as Cancer Agency settings who will be involved in the
development process, and will act as champions for the initiative. This process worked
well in BC and may work well in other Provinces.
Phase III –
Once consensus has taken place nationally, we envision that a National/Regional
Taskforce will work with Initiatives across the country developing specific Guidelines
that will be organized under a common continuum framework. In the process of
developing CPG’s, focused attention will be paid to locally-identified uptake and
dissemination issues. National partners may be approached, for instance, CSCC, CAPCA
and the National Cancer Leadership Forum. CAPO could oversee the project through its
Clinical Advisory Committee. Currently the chair of the BC Workgroup is a Board
member of CAPO. The BC Cancer Agency has agreed to support the BC workgroup’s
research consultant through phases II and III as the Project unfolds nationally.
As with our colleagues in France and Australia, the foundation has been provided. The
next step is to build the structure with carefully drawn plans. It is our hope and intention
that this will take place in the next two phases.
Footnotes and references
1
The National Workshop on Clinical Practice Guidelines for Cancer Care, Ottawa, September 2002 and
Community Oncology Meetings, Vancouver, Nov 2002.
2
Browman, G et al (1995). The Practice Guidelines Development Cycle: A Conceptual Tool for Practice
Guidelines Development and Implementation. Journal of Clinical Oncology 13(2):502-12.
3
Browman, G. (2001). Background to Clinical Guidelines in Cancer: SOR, a Programmatic Approach to
Guideline Development and Aftercare. British Journal of Cancer;84 (Supp 2):1-3.
4
Cancer Care Ontario Practice Guidelines Initiative
http://www.ccopebc.ca/ccopgi.html
5 Gallagher, R., Roberts, D. A Systematic Review and Critical Appraisal of the Evidence on Oxygen and
Airflow Effect on Dyspnea at Rest in Palliative Patients. (Unpublished)
6
France, the only European country to have developed oncology guidelines, adopted a multidisciplinary
and integrated approach which likely addresses psychological issues, but the details could not yet be
determined. The European Cancer Initiative is in the process if translating the French SOR.
7
Winn, R.J., Brown, N.H (1999). The NCCN Guidelines Development Process. Oncology: 13 (11A).
8
Holland, J.C., Jacobsen, P.B., Riba, M.B (2001). Distress Management. Cancer Control: 8 (6): 88-93.
9
Holland, J. (2000). Psychosocial Distress in the Patient with Cancer: Standards of Care and Treatment
Guidelines. Oncology Symptom Management; 19-24.
10
Psychosocial Clinical Practice Guidelines: Information, Support and Counseling for Women with Breast
Cancer. http://www.health.gov.au/nhmrc/publications/pdf/cp61.pdf
11
Veach, T.A., Nicholas, D.R., Barton, M.A., Lillington, T&F (2002). Cancer and the Family Life Cycle.
Lillington, N.C; p.6.
The authors would like to acknowledge the contributions of the following:
 Members of the BC CPG Working Group (Kathy Brandon, Vickeri Cochrane,
Lindsay Downie, Sydney Foran, Chris Huston, Azmina Lakhani, Susan Powell,
Jennifer Robinson, Dave Scanlan, Micky Smart, Myrna Tracy and Anne Walker)
 Richard Doll, Provincial Leader for Rehabilitation Network, BC Cancer Agency
 Lynn Stevenson, formerly Provincial Practice Leader, Nursing, BC Cancer
Agency
Special thanks to Melanie Davis, Program Secretary, Patient and Family Counseling
Services, Vancouver Island.