Screening of Distress and Referral Need in Dutch oncology practice
van Nuenen, Floor Maria
DOI:
10.33612/diss.97362459
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Publication date: 2019
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van Nuenen, F. M. (2019). Screening of Distress and Referral Need in Dutch oncology practice. Rijksuniversiteit Groningen. https://doi.org/10.33612/diss.97362459
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Introduction
Confrontation with cancer
In the Netherlands, more than 115,000 people are diagnosed with cancer each year1. Learning that you have cancer is a major event for almost everyone, because cancer is often associated with death and highly burdensome treatments. However, early detection and expanded medical treatment options have resulted in a considerable increase in the number of people surviving this illness. This, combined with the fact that the number of people diagnosed with cancer has also increased, means that there are now more people who are suffering from or have been treated for cancer. In 2018 in the Netherlands, more than 600,000 people were suffering from cancer or its associated consequences, according to the 10-year prevalence rates1.
Distress
In general, cancer treatments have become less invasive over the years. However, learning that you have cancer and having to undergo cancer treatment means quite a physical, psychological, social, practical, and spiritual/existential burden for most people2.
• Physical symptoms may include fatigue, weight loss, pain, nausea, vomiting, insomnia, and hair loss;
• Psychological symptoms may include emotional problems such as anxiety, depression, despair, uncertainty, loneliness, and a loss of control and self-respect. Cognitive symptoms may include the loss of concentration and memory;
• Spiritual/existential problems are also common and may include questions about the meaning of life and fear of death;
• Social problems may include changes in interactions with loved ones, such as a partner and children, and with friends and acquaintances;
• Practical problems associated with cancer diagnosis and treatment are common, too, and may include issues regarding returning to work, insurances, mortgages, housekeeping, care for children, et cetera.
In 1998, the National Comprehensive Cancer Network (NCCN) introduced the term ‘distress’ to describe the physical, emotional, social, practical, and spiritual/ existential burden of cancer diagnosis and treatment as perceived by cancer patients3, as follows:
DEFINITION OF DISTRESS IN CANCER
Distress is a multifactorial unpleasant emotional experience of a psychological (cognitive, behavioral, emotional), social, and/or spiritual nature that may interfere with the ability to cope effectively with cancer, its physical symptoms and its treatment. Distress extends along a continuum, ranging from common normal feelings of vulnerability, sadness, and fears to problems that can become disabling, such as depression, anxiety, panic, social isolation, and existential and spiritual crisis.
Dealing with (di)stress
Patients may deal with stressful events in different ways. The Stress and Coping Theory developed by Lazarus and Folkmanprovides a theoretical basis (see figure 1)4. Figuur H1.1
Figure 1 An edited representation of Lazarus and Folkman’s model of the Stress and
This theory is based on the principle that an individual patient assesses a stressor (in this case, learning that they have cancer) in a certain way – a process called primary appraisal. This assessment affects the level of distress perceived by the patient. Internal and external resources help the patient to deal with the stressor to a certain extent – a process called secondary appraisal. This results in an outcome, e.g. the level of quality of life or the level of distress. Internal resources are associated with the patient themselves, e.g. their personality or the ability to solve problems. External resources refer to people around the patient, such as their family members and friends, as well as care providers involved with the patient.
People may have different internal and external resources. This means that what is considered a resource by some may also prove to be a risk factor for distress for others. For instance, patients with less effective internal resources, e.g. regrets about the past, a pessimistic personality, a history of depression, or a tendency towards self-destruction and feelings of worthlessness, are more likely to perceive distress. The same goes for patients with less effective external resources, e.g. patients with multi-problem families or patients receiving little support3,5,6.
Sociodemographic and illness-related risk factors for distress
Risk factors for distress may also include sociodemographic and illness-related characteristics. For instance, young women have been found to perceive more distress than older women and men8. It has also been suggested that having young children is a risk factor for more distress9. It is shown that patients suffering from prostate cancer, particularly men receiving low-intensity treatment, perceive less distress than patients with other tumour types7. Patients suffering from lung, brain, or pancreatic cancer are found to perceive more distress than patients with breast or intestinal cancer8. Patients recently diagnosed with cancer seem to perceive more distress than patients who were diagnosed with cancer longer ago. Patients with serious comorbidities or a poor prognosis are also more likely to perceive distress.2,10 Although many studies have been conducted on this subject, the scientific evidence is inconsistent in terms of the sociodemographic and illness-related factors affecting the level of distress.2
The assessment of distress
Since 1980, many standardized self-report questionnaires have been developed for the assessment of distress. These are called patient-reported outcome measures (PROM’s). Screening pioneers Weisman, Worden, and Sobel introduced the first questionnaire, the Omega Screening Tool11. Next, other questionnaires were introduced, such as the Hospital Anxiety and Depression Scale (HADS), the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC-QLQ-C30), the Symptom Checklist (SCL-90), and the Brief Symptom Inventory (BSI)2. However, these questionnaires were mainly used for scientific purposes. Only a few of them were also used as screening instruments in daily practice. In addition, the majority of these instruments have disadvantages in terms of being too long (SCL-90), not being cancer-specific (HADS), or having the necessity to calculate the score (EORTC-QLQ). There was a need for a short, personalized, easy to interpret, multidimensional, cancer-specific instrument with solid psychometric properties, the ability to provide information about the patient’s functioning in the course of time, to identify high-risk patients, and to indicate which patients need to be referred, which is suitable for screening in daily practice. Therefore, the NCCN has developed the Distress Thermometer (DT) together with the Problem List (PL)12,13. These instruments will be discussed later in this chapter.
Psychosocial support and care
It appears that the basic psychosocial care provided by primary care providers and loved ones is sufficient for most patients to deal with the problems that they encounte1
a. However, 25-52% of patients perceive such high levels of distress that
a Basic psychosocial care is care provided by medical specialists, (oncology) nurses, general
practitioners and homecare nurses. This type of care consists of the following elements: 1) providing information about the illness and the symptoms that may occur at each stage and phase of the illness and treatment, 2) providing support for decision-making, 3) providing emotional support for dealing with symptoms and helping to normalize symptoms, 4) providing information about and encouraging self-management techniques, easily accessible contacts with fellow patients, and professional psychosocial care, and 5) the systematic screening for psychosocial oncology problems and, if necessary, referral 10,14.
b Specialized psychosocial care is an umbrella term referring to psychosocial support and
psychological care. Psychosocial support mainly consists of emotional and practical support for (relatively) simple psychological and social problems. Psychological care mainly consists of treatment for psychological problems/disorders involving General Basic Mental Healthcare (GBGGZ) and specialized Mental Healthcare (SGGZ) 10.
referral to specialized psychosocial and/or paramedical care providers could be useful8,15,16. Only 10% of patients who report increased levels of distress actually receive specialized psychosocial careb for the problems that they perceive17,18. Assuming that someone who perceives high levels of distress could benefit from specialized psychosocial care, the number of people perceiving clinically relevant levels of distress does not seem to match the number of people actually receiving specialized care. Additionally, scientific literature indicates that 37-54% of patients have unmet supportive care needs19-21. These include psychosocial needs as well as the need for care due to physical problems.
Reasons why distress remains unrecognized
The scientific literature indicates various reasons as to why distress is not recognized in a timely manner. For instance, it is suggested that doctors and nurses do not recognize psychosocial problems due to overcrowded outpatient and hospital departments and/or the non-medical nature of the problems. It is also suggested that paying attention to psychosocial problems is time-consuming and that specific communication skills – which are often lacking – are required to discover psychosocial problems. If problems are recognized, it is not known whether and to whom the patients should be referred3,22-25. It is also shown that doctors and nurses tend to underestimate severe distress in particular26. Many patients, on the other hand, do not admit perceiving psychosocial problems. They are reluctant to talk about their problems, because they think that there is no time to discuss non-medical issues and that hospital professionals are not willing to listen to the problems that they perceive. Finally, a number of patients have the idea that the doctor could not help anyway with their non-medical problems25,27.
Consequences of distress remaining unrecognized
A considerable number of patients may have unmet needs for specialized psychosocial care. This is a cause for concern, because distress and unmet care needs are shown to be associated with a lower quality of life, more comorbidities, higher mortality rates, more problems in decision-making (regarding treatment), lower adherence to treatment, less satisfaction with the care provided, and increased care consumption and costs3,28-31. This means that distress can interfere with the treatment, recovery, and coping process. It is shown that
problems and distress and improving quality of life32-35. Therefore, the early identification of patients who experience problems associated with and following cancer diagnosis and treatment and referral of them to the right specialized care healthcare professional could improve their quality of life and satisfaction with the communication and care provided.
Distress screening
In the late 1990s, the National Comprehensive Cancer Network was the first organization to develop a guideline to improve psychosocial care for cancer patients. Other national and international professional and accrediting organizations acknowledged the importance of this or drew up guidelines and standards themselves, including the International Psycho-Oncology Society, the Institute of Medicine, the American Society of Clinical Oncology, the Canadian Partnership against Cancer, the National Institute for Clinical Excellence, and the National Health and Medical Research Council3,36-38.
In the Netherlands, the importance of systematic screening for distress has also been acknowledged. The report of workgroup 5 of the Dutch National Cancer Control Programme 2005-2010 (NPK) ‘Integration of psychosocial care in oncology’ (in Dutch: Integratie van psychosociale zorg in de oncologie) and the report entitled ‘Care chain for cancer patients must improve’ (in Dutch: Zorgketen
voor kankerpatiënten moet verbeteren) drawn up by the Healthcare Inspectorate
described the need for the systematic screening of psychosocial problems in cancer patients and the referral to specialized care39,40.
The Dutch Society for Psychosocial Oncology (NVPO) took the initiative to develop the guideline entitled ‘Screening for psychosocial distress’ (in Dutch: ‘Detecteren behoefte psychosociale zorg’). The Netherlands Comprehensive Cancer Organisation facilitated and the Dutch Cancer Society funded the development of the guideline. The guideline aims to systematically identify (increased levels of) distress in all adults with cancer receiving hospital care and to provide, if necessary and/or desired, suitable care to reduce the levels of distress and the identified issues as well as to prevent more serious problems. It was suggested that this approach improves the quality of life of patients41.
To achieve this aim, the following approach was recommended42 (see figure 2): 1) Systematic and routine completion of a screening instrument to cancer
patients, to gain insight into the nature and severity of the problems perceived by them.
2) Discussion of the screening instrument responses by the patient and the care
provider.
3) Referral to specialized psychosocial and/or paramedical healthcare
professionals, if necessary and/or wished by the patient, based on the discussion of the responses.
H1.2
Figure 2 A schematic representation of the approach advised by the guideline ‘Screening
for psychosocial distress’42.
Screening instrument
The Dutch version of the Distress Thermometer in combination with the Problem List (DT&PL; in Dutch: Lastmeter) is the instrument recommended in the guideline to be used for systematic screening and monitoring (see appendix 1 for the Dutch and English versions of the DT&PL). The DT&PL a) measures the level of distress, b) provides information about the extent to which practical, social, emotional, spiritual and physical problems, if any, occur (total number of items on the
Netherlands, this DT&PL version has been evaluated in terms of validity and reliability. The level of distress and the severity of a problem are expressed as a score between 0 (no burden at all) and 10 (a heavy burden). A DT-score of ≥5 indicates clinically relevant distress43. The international scientific literature has reported cut-off points ranging from a DT-score of ≥3 to ≥7. A recent meta-analysis has shown that a DT-score of ≥4 is the optimal cut-off point for clinically relevant distress44. This cut-off point has been included in the Dutch guideline10.
Measurement moments
Although the scientific literature has not indicated or recommended an optimal moment for or frequency of distress screening, the guideline ‘Screening for psychosocial distress’ recommends that assessments take place frequently during treatments with curative or palliative intent and during follow-up. It is recommended that the first assessment takes place soon after the patient has been diagnosed with cancer, i.e. not during the ‘bad news’ consultation itself but shortly afterwards. It is also recommended that assessments take place no more than once every 3 months during treatment and follow-up, unless the patient decides to complete the DT&PL by themselves. It may be useful to screen for distress at illness-related high-risk moments, i.e. at the beginning and the end of each treatment (chemotherapy, radiotherapy, targeted therapy, and hormone therapy), during the transition from treatment to follow-up care, if recurrent and/or metastatic disease occurs, or during the transition from curative to palliative care.
Discussion
The DT&PL is an useful instrument to improve the communication between the primary care provider and the patient about their psychosocial and physical functioning. The responses are discussed upon submission of the completed DT&PL to the treating physician, nurse/nurse specialist, or other healthcare professional, or during the next consultation, if the patient has completed the online version of the DT&PL. This approach allows the care provider to give basic psychosocial support for problems perceived by the patient, to inform the patient of any self-help methods and, if necessary or desired, to refer the patient to specialized care providers. Unlike international guidelines, the Dutch guideline recommends that this approach is used for all patients, regardless of the DT-score being higher or lower than the cut-off point. Research has shown that 42-75% of patients with clinically relevant distress (i.e. a DT-score higher than the
cut-off point) have no desire for referral43, 45-47, whereas 10-44% of patients with a DT-score lower than the cut-off point may have a desire for referral43,48-50. In the Netherlands, the DT&PL is not only used as a screening instrument, but also as an instrument for the communication about the background of the distress and the desire for referral.
Referral
If the discussion of the responses reveals that the patient has extra care needs, it is important that the care provider and the patient discuss what specialized care is appropriate for the perceived problems and to whom the patient wishes to be referred. This approach allows the patient to actively participate in the decision of whether to be referred and if so, to whom, instead of the care provider making this decision almost entirely by themselves.
The Dutch guideline focuses equally on the psychosocial and the physical causes of distress. As a result, the patient can be referred to specialized psychosocial care providers (e.g. a psychologist, social worker, psychiatrist, or pastoral worker) and/or allied healthcare providers (e.g. a physiotherapist, dietician, or occupational therapist). International guidelines, on the other hand, mainly focus on psychosocial problems and referral to psychosocial care providers3,36.
Organizational preconditions
The identification of distress and care needs in daily practice requires that an organization considers psychosocial care as an integrated part of oncology care and that the healthcare professionals involved consider the identification of distress and the need for psychosocial care as an essential part of basic care. The guideline recommends that sufficient manpower and financial means are made available for the implementation and the documentation of the distress screening procedure (i.e. who does what and when; whom to refer to and for what problems; agreements on the documentation to ensure continuity) in the existing care process and for providing healthcare professionals with training in the implementation of the subsequent steps of the process. It is also important that enough time and manpower are made available to enable specialized
The first version of the guideline was published on www.oncoline.nl in 201010 and the revised version in 201741. The latter also contains recommendations for the identification of distress and care needs in primary healthcare settings. However, this thesis only focuses on the screening of distress and the need for psychosocial care in adults with cancer in hospital settings.
From guideline to practice
The effectiveness of guidelines depends on the success of their implementation in daily care practice. However, the implementation of guidelines and changes in the care process do not happen automatically51. The same goes for the implementation of guidelines for distress screening52. Six years after the American NCCN guideline was made available, 68% of oncologists were still unfamiliar with it, whereas familiarity with the guideline proved to be the strongest predictor of the implementation of systematic distress screening53. More recent studies have shown that a coordinated and structured approach, engaging stakeholders, establishing interdisciplinary teams of professionals, providing thorough and targeted education and utilizing a proper scheduling increase the chance of the implementation being successful3,54-56.
Implementation project
In 2005, the Groningen branch of the Netherlands Comprehensive Cancer Organisation (IKNL-G) started a project aimed at the development and implementation of the ‘Screening for Distress and Referral Need’ (SDRN) process in 23 hospitals in the Provinces of Groningen, Friesland, Drenthe, Overijssel, and Gelderland (the region in which the former Comprehensive Cancer Centre Noord and the former Comprehensive Cancer Centre Stedendriehoek Twente were located). This process was largely included in the guideline ‘Screening for psychosocial distress’. A structured implementation plan and materials, including information materials, were developed (see Box 1).
Box 1 Description of the structured implementation plan.
Implementation plan
IKNL-G was responsible for the centralized management of the project. An IKNL-G employee contacted the hospitals and explained the importance of the identification of distress and care needs in cancer patients to the oncology committee and the healthcare professionals involved (i.e. medical specialists, nurses, psychosocial, and allied healthcare professionals). If the hospital management and professionals were willing to cooperate and were able to find time and resources for the implementation, a multidisciplinary project group was formed (preferably consisting of a medical specialist, nurse, dietician, physiotherapist, psychologist, social worker, pastoral worker, and/or psychiatrist), led by one person (i.e., a member of the project group). The IKNL-G employee acted as project coordinator, and together with the multidisciplinary project group, the team initiated the implementation process. The multidisciplinary project group and the IKNL-G employee discussed how to integrate the SDRN process into the existing care process. Agreements were made and documented with regard to who would provide the patient with information about the aim of the SDRN process and the DT&PL instrument and when, who would discuss the DT&PL responses with the patient and when, and when to refer the patient to which care provider and for what problems. Healthcare professionals received training in how to carry out the SDRN process, how to provide patients with information about the aim of SDRN and the DT&PL, how to discuss the DT&PL responses with the patient, what expertise specialized psychosocial and paramedical care providers have and when to refer the patient to which care provider for what problems.
IKNL-G set up regional meetings for the multidisciplinary project groups of the hospitals to share knowledge and experiences of the implementation of SDRN and how it worked out in practice.
Materials
IKNL-G validated the DT&PL and made it available as an instrument for the SDRN process. English and Turkish versions of the instrument were made available as well (see appendix 1). IKNL-G developed three patient brochure templates: one explaining the aim of SDRN and the DT&PL, one providing information about the expertise and the availability of various psychosocial and allied healthcare providers in the hospital and one providing information about the availability of healthcare professionals outside the hospital. IKNL-G also developed templates to document agreements on how to carry out the SDRN process in the department and on when to refer which patient to which care provider. The materials were tailored to the wishes of each hospital.
This thesis
This thesis describes a number of aspects of the identification of distress and care needs in cancer patients and the implementation of the SDRN process in daily practice in hospitals located in the north-eastern part of the Netherlands. IKNL-G designed the research constituting this thesis and collected the data. Funding by the Dutch Cancer Society enabled us to perform data-analyses and to describe the study results. The study results can provide useful tools for the optimization and further implementation of distress screening in oncology practice.
Outline of this thesis
Chapter 2 focuses on the healthcare professional’s perspective. The extent to which SDRN has been implemented according to a structured implementation plan in 23 hospitals in the north-eastern part of the Netherlands and the care providers’ experiences of carrying out this process and using the DT&PL in daily practice were studied. Chapter 3 focuses on the patient’s perspective and studied the patients’ experiences of the SDRN process and the DT&PL instrument. Chapter 4 presents a study of the effects of the implementation of SDRN on various patient-reported outcome measures, such as the health-related quality of life, anxiety and depression, distress, cancer-related problems, and the desire for referral. An online version of the DT&PL was developed and introduced in order to improve the implementation of the SDRN process and the accessibility of the DT&PL to patients. Chapter 5 examines the comparability of online DT&PLs completed in a clinical care setting and paper DT&PLs completed in a research setting. Chapter 6 investigates the effects of marital status and life phases on the level of distress. Chapter 7 summarizes and discusses the main findings of this thesis. Methodological considerations, clinical implications, and suggestions for future research are also discussed.
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