University of Groningen Screening of Distress and Referral Need in Dutch oncology practice van Nuenen, Floor Maria

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University of Groningen

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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Citation for published version (APA):

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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SCREENING

OF DISTRESS

AND REFERRAL

NEED IN DUTCH

ONCOLOGY

PRACTICE

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Colofon

The research of this thesis was made possible by the Netherlands Comprehensive Cancer Organisation, location Groningen and financially supported by the Dutch Cancer Society.

The printing of this thesis was supported by: University of Groningen, Research Institute SHARE, University Medical Center Groningen, Netherlands Comprehensive Cancer Organisation, Servier Nederland Farma B.V.

Lay-out & Printed by: Gildeprint ISBN: 9789463237581

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Screening of Distress and Referral Need

in Dutch oncology practice

Proefschrift

ter verkrijging van de graad van doctor aan de Rijksuniversiteit Groningen

op gezag van de

rector magnificus prof. dr. C. Wijmenga en volgens besluit van het College voor Promoties.

De openbare verdediging zal plaatsvinden op maandag 14 oktober 2019 om 11.00 uur

door

Floor Maria van Nuenen

geboren op 27 november 1980 te Lochem

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Promotor

Prof. dr. H.B.M. van de Wiel

Copromotores Dr. J.E.H.M. Hoekstra-Weebers Dr. S.M. Donofrio Beoordelingscommissie Prof. dr. H.W. Nijman Prof. dr. P.C. Huijgens

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General introduction

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Chapter 1

8

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.

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General introduction and outline

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

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Chapter 1

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

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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

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12

Chapter 1

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 perceive}17,18_.

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 various interventions (e.g. cognitive behavioural therapy, psychoeducation, mindfulness, and exercise therapy) have positive effects in terms of reducing

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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_.

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Chapter 1

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 PL = 47) and c) provides information about the patient’s desire to be referred to specialized healthcare professionals for the problems they perceive. In the

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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 guideline}10_.

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

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cut-16

Chapter 1

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 psychosocial and allied healthcare providers to provide direct and indirect (e.g. participation in multidisciplinary consultation) care.

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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).

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Chapter 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.

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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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Chapter 1

References

1. Nederlandse Kankerregistratie. Cijfers over kanker 2018. Retrieved on April 5, 2019 from https://www.cijfersoverkanker.nl/selecties.

2. de Haes H, Gualthérie van Weezel L, Sanderman R. Psychologische patiëntenzorg in de

oncologie, handboek voor professionals. Uitgever Koninklijke van Gorcum B.V.; 2017.

3. National Comprehensive Cancer Network. NCCN clinical practice guidelines in oncology: distress management V.2.2019. Retrieved on April 22, 2019 from www.nccn.org.

4. Lazarus RS, Folkman S. Stress, appraisal and coping. New York: Springer; 1984.

5. Weisman AD. Early diagnosis of vulnerability in cancer patients. American Journal of Medical

Science. 1976;271(2),187–196.

6. Weisman AD. The existential plight in cancer: Significance of the first 100 days. International

Journal of Psychiatry in Medicine. 1976;7(1),1–15.

7. Admiraal JM, Reyners AK, Hoekstra-Weebers JE. Do cancer and treatment type affect distress?

Psycho-Oncology. 2013;22:1766–1773.

8. Zabora J, BrintzenhofeSzoc K, Curbow B, Hooker C, Piantadosi S. The prevalence of psychological distress by cancer site. Psycho-Oncology. 2001;10(1):19-28.

9. Gazendam-Donofrio SM, Hoekstra HJ, van der Graaf WT, Pras E, Visser A, Huizinga GA, Hoekstra-Weebers JE. Quality of life of parents with children living at home: when one parent has cancer.

Support Care Cancer. 2008;16(2):133-41.

10. Netherlands Comprehensive Cancer Organisation. Dutch guideline: ‘Detecteren behoefte psychosociale zorg’, versie 2.0:2017. Retrieved on January 17, 2019 from https://www. oncoline.nl/detecteren-behoefte-psychosociale-zorg.

11. Weisman AD, Worden JW, Sobel HJ. Psychosocial screening and intervention with cancer

patients: A research report. Boston:Harvard Medical School;1980.

12. Roth AJ, Kornblith AB, Batel-Copel L, Peabody E, Scher HI, Holland JC. Rapid screening for psychologic distress in men with prostate carcinoma. Cancer. 1998;82:1904–1908.

13. Mitchell AJ. Pooled results from 38 analyses of the accuracy of distress thermometer and other ultra-short methods of detecting cancer-related mood disorders. J Clin Oncol. 2007;25(29):4670-81.

14. VISIE PSYCHOSOCIALE ONCOLOGISCHE ZORG OP MAAT Kansen en knelpunten. Retrieved on April 12 from https://nvpo.nl/wp-content/uploads/2014/04/140414-Visie-PSOZ-final.pdf. 15. Carlson LE, Zelinski EL, Toivonen KI, Sundstrom L, Jobin CT, Damaskos P, Zebrack B. Prevalence of

psychosocial distress in cancer patients across 55 North American cancer centers. J Psychosoc

Oncol. 2018;28:1-17.

16. Mehnert A, Hartung TJ, Friedrich M, Vehling S, Brähler E, Härter M, Keller M, Schulz H, Wegscheider K, Weis J, Koch U, Faller H. One in two cancer patients is significantly distressed: Prevalence and indicators of distress. Psycho-Oncology. 2018;27(1):75-82.

17. Eakin EG, Strycker LA. Awareness and barriers to use of cancer support and information resources by HMO patients with breast, prostate, or colon cancer: patient and provider perspectives. Psycho-Oncology. 2001;10:103–113.

18. Carlson LE, Angen M, Cullum J, Goodey E, Koopmans J, Lamont L, MacRae JH, Martin M, Pelletier G, Robinson J, Simpson JS, Speca M, Tillotson L, Bultz BD. High levels of untreated distress and fatigue in cancer patients. Br J Cancer 2004;90:2297–2304.

(22)

21

19. Beesley VL, Janda M, Goldstein D, Gooden H, Merrett ND, O’Connell DL, Rowlands IJ, Wyld D, Neale RE. A tsunami of unmet needs: Pancreatic and ampullary cancer patients’ supportive care needs and use of community and allied health services. Psycho-Oncology. 2016;25:150–157. 20. Faller H, Koch U, Brähler E, Härter M, Keller M, Schulz H, Wegscheider K, Weis J, Boehncke A,

Hund B, Reuter K, Richard M, Sehner S, Szalai C, Wittchen HU, Mehnert A. (2016). Satisfaction with information and unmet information needs in men and women with cancer. Journal of

Cancer Survivorship. 2016;10(1):62–70.

21. Sanson-Fisher R, Girgis A, Boyes A, Bonevski B, Burton L, Cook P. The unmet supportive care needs of patients with cancer. Supportive Care Review Group. Cancer. 2000;88(1):226–237. 22. Fagerlind H, Kettis A, Glimelius B, Ring L. Barriers against psychosocial communication:

oncologists’ perceptions. Journal of Clinical Oncology. 2013;31(30):3815–3822.

23. Taylor S, Harley C, Campbell LJ, Bingham L, Podmore EJ, Newsham AC, Velikova G. Discussion of emotional and social impact of cancer during outpatient oncology consultations.

Psycho-Oncology. 2011;20(3):242–251.

24. Detmar S, Muller M, Schornagel J, Wever L, Aaronson N. Health-related quality-of-life assessments and patient-physician communication: a randomized controlled trial. Journal of

American Medical Association. 2002;288:3027-34.

25. Tondorf, T. Comprehensive cancer care: cancer patients’ and oncologists’ perspectives on psycho-oncological support. 2019, Doctoral Thesis, University of Basel, Faculty of Psychology. 26. Kruijver I, Garssen B, Kuiper AJ, Visser A, Kuiper A. Signalising psychosocial problems in cancer care. The structural use of a short psychosocial checklist during medical or nursing visits.

Patient Education and Counseling. 2006;62:163-77.

27. Ryan H, Schofield RH, Cockburn J, Butow P, Tattersall MH, Turner J, Girgis A, Bandaranayake D, Bowman D. How to recognize and manage psychosocial distress in cancer patients. European

Journal of Cancer Care. 2005;14:7-15.

28. Mehnert A, Brahler E, Faller H, Harter M, Keller M, Schulz H, Wegscheider K, Weis J, Boehncke A, Hund B, Reuter K, Richard M, Sehner S, Sommerfeldt S, Szalai C, Wittchen HU, Koch, U. Fourweek prevalence of mental disorders in patients with cancer across major tumor entities.

Journal of Clinical Oncology. 2014;32(31):3540–3546.

29. Chen AM, Hsu S, Felix C, Garst J, Yoshizaki T. Effect of psychosocial distress on outcome for head and neck cancer patients undergoing radiation. Laryngoscope. 2018;128(3):641-645. 30. Rim SH, Yabroff KR, Dasari S, Han X, Litzelman K, Ekwueme DU. Preventive care service

use among cancer survivors with serious psychological distress: An analysis of the medical expenditure panel survey data. Prev Med. 2019;123:152-159.

31. Mitchell AJ, Vahabzadeh A, Magruder K. Screening for distress and depression in cancer settings: 10 lessons from 40 years of primary-care research. Psycho-Oncology. 2011;20(6):572-84. 32. Osborn R, Demoncada A, Feuerstein M. Psychosocial interventions for depression, anxiety,

and quality of life in cancer survivors: meta-analyses. International Journal of Psychiatry and

Medicine. 2006;36:13-34.

33. Van Weert E, Hoekstra-Weebers J, Grol B, Otter R, Arendzen HJ, Postema K, Sanderman R, van der Schans Cl. A multidimensional cancer rehabilitation program for cancer survivors: effectiveness on health-related quality of life. J Psychosom Res. 2005;58(6):485-96.

34. Faller H, Schuler M, Richard M, Heckl U, Weis J, Kuffner R. Effects of psychooncologic interventions on emotional distress and quality of life in adult patients with cancer: systematic review and meta-analysis. Journal of Clinical Oncology. 2013;31(6):782–793.

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Chapter 1

35. Lopez G, Eddy C, Liu W, Li Y, Chen M, Bruera E, Cohen L. Physical Therapist-Led Exercise Assessment and Counseling in Integrative Cancer Care: Effects on Patient Self-reported Symptoms and Quality of Life. Integr Cancer Ther. 2019 doi: 10.1177/1534735419832360. 36. On behalf of the Cancer Journey Advisory Group of the Canadian Partnership against Cancer.

A Pan Canadian Practice Guideline: Screening, Assessment and Care of Psychosocial Distress, Depression, and Anxiety in Adults with Cancer. Retrieved on February 8, 2019 from https:// www.cancer.org/ cancer.html.

37. Butow P, Price MA, Shaw JM, Turner J, Clayton JM, Grimison P, Rankin N, Kirsten L. Clinical pathway for the screening, assessment and management of anxiety and depression in adult cancer patients: Australian guidelines. Psycho-Oncology 2015;24(9):987–1001.

38. National Institute for Clinical Excellence. Improving supportive and palliative care for adults with cancer, the manual. Retrieved on April 6 2019 from https://www.nice.org.uk/guidance/csg4/ resources/improving-supportive-and-palliative-care-for-adults-with-cancer-pdf-773375005. 39. Nationaal Programma Kankerbestrijding 2005-2010. Rapport Nationaal Programma

Kankerbestrijding, werkgroep 5: Integratie van psychosociale zorg in de oncologie, 2010. 40. Inspectie voor de GezondheidsZorg. Rapport Zorgketen voor kankerpatiënten moet verbeteren,

2009.

41. Netherlands Comprehensive Cancer Organisation. Dutch guideline: ‘Detecteren behoefte psychosociale zorg’, versie: 1.0. 2010. Retrieved on May 3, 2015 from http://oncoline.nl/ detecterenbehoefte-psychosociale-zorg.

42. Hoekstra-Weebers JE. Psychosociale signalering in de regio van het Integraal Kankercentrum Noord Oost (IKNO). Ned Tijdschr Oncol. 2010;7:238–246.

43. Tuinman MA, Gazendam-Donofrio SM, Hoekstra-Weebers JE. Screening and referral for psychosocial distress in oncologic practice: use of the Distress Thermometer. Cancer 2008;113(4): 870-878.

44. Ma X, Zhang J, Zhong W, Shu C, Wang F, Wen J, Zhou M, Sang Y, Jiang Y, Liu L. The diagnostic role of a short screening tool-the distress thermometer: a meta-analysis. Support Care Cancer. 2014 ;22(7):1741-55.

45. Baker-Glenn EA, Park B, Granger L, Symonds P, Mitchell AJ. Desire for psychological support in cancer patients with depression or distress: validation of a simple help question.

Psycho-Oncology. 2011;20(5):525–531.

46. Clover KA, Mitchell AJ, Britton B, Carter G. Why do oncology outpatients who report emotional distress decline help? Psycho-Oncology. 2015;24(7):812–818.

47. Shimizu K, Ishibashi Y, Umezawa S, Izumi H, Akizuki N, Ogawa A, Fujiwara Y, Ando M, Katsumata N, Tamura K, Kouno T, Shimizu C, Yonemori K, Yunokawa M, Uchitomi, Y. Feasibility and usefulness of the “Distress Screening Program in Ambulatory Care” in clinical oncology practice.

Psycho-Oncology. 2010;19(7):718–725.

48. van Scheppingen C, Schroevers MJ, Smink A, van der Linden YM, Mul VE, Langendijk JA, Coyne JC, Sanderman, R. Does screening for distress efficiently uncover meetable unmet needs in cancer patients? Psycho-Oncology. 2011;20(6):655–663.

49. Bonacchi A, Rossi A, Bellotti L, Franco S, Toccafondi A, Miccinesi G, Rosselli M. Assessment of psychological distress in cancer patients: a pivotal role for clinical interview. Psycho-Oncology. 2010;19(12):1294–1302.

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50. Faller H, Weis J, Koch U, Brähler E, Härter M, Keller M, Schulz H, Wegscheider K, Boehncke A, Hund B, Reuter K, Richard M, Sehner S, Szalai C, Wittchen HU, Mehnert, A. Perceived need for psychosocial support depending on emotional distress and mental comorbidity in men and women with cancer. Journal of Psychosomatic Research. 2016;81:24–30.

51. Grol R, Wensing M. Improving patient car: The implementation of change in clinical practice. London: Elsevier; 2005.

52. Holland J, Watson M, Dunn J. The IPOS new International Standard of Quality Cancer Care: integrating the psychosocial domain into routine care. Psycho-Oncology. 2011;20(7):677–680. 53. Pirl WF, Muriel A, Hwang V, Kornblith A, Greer J, Donelan K, Greenberg DB, Temel J, Schapira L. Screening for psychosocial distress: a national survey of oncologists. J Support Oncol. 2007;5(10):499-504.

54. Dudgeon D, King S, Howell D, Green E, Gilbert J, Hughes E,Lalonde B, Angus H, Sawka C. Cancer Care Ontario’s experience with implementation of routine physical and psychological symptom distress screening. Psycho-Oncology. 2012;21:357–364.

55. Passalacqua R, AnnunziataMA, Borreani C, Diodati F, Isa L, Saleri J, Verusio C, Caminiti C. Feasibility of a quality improvement strategy integrating psychosocial care into 28 medical cancer centers (HuCare project). Support Care Cancer. 2015;24(1):147–155.

56. Watson L, Groff S, Tamagawa R, Looyis J, Farkas S, Schaitel B, DeIure A, Faris P, Bultz BD. Evaluating the Impact of Provincial Implementation of Screening for Distress on Quality of Life, Symptom Reports, and Psychosocial Well-Being in Patients With Cancer. J Natl Compr Canc

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F. M. van Nuenen, S. M. Donofrio, M. A. Tuinman, H. B. M. van de Wiel, J. E. H. M. Hoekstra-Weebers

Supportive Care in Cancer. 2017 Jan;25(1):103-110. Epub 2016 Aug 26.

Feasibility of implementing

the ‘Screening for Distress and

Referral Need’ process in 23

Dutch hospitals

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Chapter 2

Abstract

Purpose In the Netherlands, the three-step process ‘Screening for Distress and

Referral Need’ (SDRN) was developed for helping identifying, and referring cancer patients suffering from clinically relevant distress or needing a referral. This process includes (1) instrument completion, (2) patient-care provider discussion of the responses, and (3) referral based on 1 and 2. The Netherlands Comprehensive Cancer Organisation, location Groningen (IKNL-G), initiated the implementation of SDRN and developed an implementation roadmap, including procedure and materials. This exploratory study examines the feasibility of SDRN implementation in hospitals, seen from healthcare providers’ perspective, responsible for implementation, and those executing SDRN.

Methods Healthcare providers, from 22 hospitals and from 5 oncology departments

of the University Medical Center Groningen (=25 % of Dutch hospitals), evaluated their experiences by responding to a 26-item internet survey.

Results Twenty-five participants (response = 93 %) completed the survey. SDRN

was implemented in 21 hospitals (implementation = 91 %), in two thirds of these hospitals in more than one patient group. Adoption of IKNL-G’s roadmap elements varied between 84 and 100 %. Participants’ average satisfaction score with SDRN was 6.5 (possible range = 0–10, range found = 5–8). Significant positive relationships were found between this satisfaction and participants’ satisfaction with frequency of SDRN (p = 0.02), and keeping logistical agreements (p = 0.04). Participants were dissatisfied with SDRN’s limited current availability to only select patient groups and only certain disease phases.

Conclusions The implementation of SDRN in daily practice, supported by a

pre-developed implementation roadmap, is highly feasible. Continuous attention to SDRN execution, broadening implementation to all forms of cancer, and during the total disease trajectory seems vital to improve healthcare providers’ satisfaction.

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Feasibility of implementing SDRN in oncology practice

Introduction

The diagnosis and treatment of cancer leads to physical and psychosocial problems in a third or more patients 1, 2_{. However, a much smaller proportion is actually}

identified by care providers and referred for psychosocial help 3_{. This suggests}

that a significant number of distressed patients do not seek professional care for their problems 4, 5_{, and/or that healthcare providers insufficiently recognize}

a possible need 6, 7_{. This is serious, as links have been found between elevated}

distress levels and reduced health-related quality of life 8_{, decreased treatment}

adherence 9_{, and low satisfaction with care}10_{. Consequently, guidelines have been}

developed to help identify patients suffering from distress and provide them with suitable care 11–13_.

In the Netherlands, the process ‘Screening for Distress and Referral Need’ (SDRN) was developed, consisting of(1) completion of a screening instrument, (2) discussion between patient and care provider of the responses, (3) referral to a psychosocial and/or allied healthcare professional depending on the discussion and patient’s wish 14_{. This SDRN process is recorded in the guideline ‘Detection}

of Need for Care’ 15_.

This process differs from that described in distress screening guidelines 11–13_{and in}

recent literature 16, 17_{in various ways. First, an important but distinct characteristic}

is that discussing responses on the screening instrument is considered an integral part of the process; communication takes place with all patients, regardless of a cut-off score. The rationale for this approach lies in the finding that a fifth of patients with low distress express a (maybe) referral wish 18_{and half of the patients}

with high distress do not desire a referral 18, 19_{. Thus, the instrument functions both}

as screening instrument and as instrument to facilitate communication about distress and need for help. Second, referral should be based on the discussion between healthcare provider and patient, based on the patients’ input, and not on a cut-off score alone. This means that patients are active participants in the decision to be referred instead of assigning this role to healthcare providers on the basis of distress screening only. Third, because equal importance is given to psychosocial and physical distress, attention is given to referral to allied healthcare professionals (e.g. physiotherapist, dietician) in addition to referral to psychosocial healthcare.

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Chapter 2

Projects aimed at improving quality of care, and guidelines have added value only when recommendations are adhered to in clinical practice. However, automatic adoption of guidelines in the clinic is not guaranteed 20, 21_{. With regard to distress}

screening guidelines, healthcare professionals’ uptake and compliance to recommendations seems to be slow and problematic 22, 23_{, although progress has}

also been reported 24_{, particularly when a systematic implementation trajectory}

supported the implementation process 25, 26_.

The Netherlands Comprehensive Cancer Organisation, location Groningen (IKNL-G), therefore developed a roadmap including procedural descriptions and supporting materials, to facilitate SDRN implementation. In order to improve future clinical screening practice and implementation trajectories, the present exploratory descriptive study evaluated the feasibility of implementing SDRN in oncology practice. Specifically we examined the following:

• Feasibility of implementing SDRN in oncology practice using a pre-developed implementation roadmap;

• Healthcare providers’ evaluation of SDRN as presently performed in their hospital.

The implementation of SDRN was not obligatory for the hospitals.

Methods

Setting

This is a feasibility study. All 23 hospitals in the northern and eastern regions of the Netherlands were approached by IKNLG to implement SDRN. Therefore, a randomized or experimental study design was not tenable.

Procedure and respondents

Information about study goals and a link to an internet survey were e-mailed to 27 contact persons from the 23 hospitals in the northeastern part of the Netherlands, which is IKNL-G’s catchment area. These hospitals form 25 % of Dutch hospitals and are representative of the Dutch situation. Contact persons came from five oncology departments from the University Medical Center Groningen (UMCG),

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and each of the remaining 22 general (teaching) hospitals. The contact person was the hospital-appointed team leader for implementing SDRN in routine cancer care in (a department of) that hospital, as described below. Contact persons were instructed to consult with colleagues executing SDRN and answer survey questions based on consensus. This method was meant to obtain care providers’ viewpoints of implementation as a whole, rather than gathering each member’s individual opinion. A reminder was e-mailed 2 weeks later.

Implementation roadmap

IKNL-G staff developed a roadmap including procedure and materials for implementing SDRN in the hospitals. Regarding procedure, firstly, IKNL-G’s representatives approached hospitals and informed oncology committees, medical specialists, nurses, psychosocial (psychologists, psychiatrists, social and pastoral workers), and/or allied (e.g. dieticians, physiotherapists, occupational therapists) healthcare providers about SDRN and its importance in daily oncologic practice by pointing to relevant literature and reports 11, 27–29_{. Secondly, discussions}

with professionals were held to underline the belief that comprehensive cancer care includes psychosocial care. IKNL-G supported implementation only when professionals shared this belief.

Hospitals deciding to implement SDRN were urged to appoint a team leader with allotted time and means. Additionally, hospitals were encouraged to form a multidisciplinary team of professionals to ensure commitment and motivation for implementing SDRN. IKNL-G provided centralized project management. A representative was present during meetings and contactable by phone and e-mail, if needed. IKNL-G organized mono- and multidisciplinary meetings regularly for professionals to exchange experiences with implementation and with the execution of screening in clinical practice.

Regarding materials, first, the Dutch version of the Distress Thermometer and Problem List (DT&PL) that includes a referral wish question was validated 18_.

The DT&PL was originally developed by the NCCN 30_{. Second, we developed}

blueprints to record agreements on logistics (e.g. who asks patients to fill in the DT&PL, when and how often, and who discusses responses with the patient) and referral issues (who refers to whom, when, and why). This means that triage was based on discussion with the patient, together with predetermined

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30

Chapter 2

algorithms for referral. Third, we offered hospitals examples of patient leaflets: one, explaining the importance of SDRN and the DT&PL, second, informing patients about availability and expertise of different psychosocial- and allied healthcare professionals in the hospital, and third, about professional resources available outside the hospital. Each hospital customized blueprints and patient information leaflets.

Instrument

A 26-item questionnaire was developed for this study, which was critically reviewed by colleagues for face validity. Questions focused on the roadmap’s procedure and materials and on the SDRN process as presently performed in participants’ practice, specifically: the participant’s function (1); implementing SDRN in the hospital (4); logistical issues, namely who is responsible for instrument completion (1), frequency and timing of SDRN (2), and recording and keeping agreements (2); the instrument used for SDRN (2, one had 14 sub-questions); communication (3, one had 6 sub-questions); referral (4); patient information (2); and evaluation of the SDRN process (5). For 24 questions, answers varied from a yes/no option to a four-point scale with answers ranging from 1 = agree completely to 4 = disagree completely, to an 11point scale ranging from 0 (extremely negative) to 10 (extremely positive). Two open questions were used to gather qualitative suggestions for improvement.

Analysis

Descriptive analyses were performed using SPSS 22. Nonparametric analyses (Mann-Whitney U tests, Kruskal-Wallis tests, and Spearman’s rho, as appropriate) were conducted to examine relationships between respondents’ satisfaction with how SDRN presently takes place in their hospital and characteristics of the SDRN (implementation) process.

Results

Participants

Twenty-five of the 27 persons approached participated (response = 93 %). The 25 respondents represented 21 hospitals.

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Of the responding team leaders, 19 were (specialist) nurses, four were managers from the oncology unit with a nursing background, and two were psychosocial healthcare providers. The two non-participants were from general hospitals. They notified us they had not implemented SDRN yet.

Implementation

Implementation rate is 91 % (21/23 hospitals). In 20 hospitals, SDRN was fully implemented. One hospital was in the phase of customizing materials at time of study; the participant from that institution did not answer all questions.

In 14 (67 %) of the participating hospitals, SDRN was implemented in more than one patient group. Regarding type of cancer, in 16 (76 %) hospitals, SDRN was implemented for breast cancer patients. Other patient groups were: colon or lung cancer and all chemotherapy patients (each N = 10(48 %)), prostate cancer (N = 6(29 %)), gynaecology cancer (N = 4(19 %)), head-neck cancer (N = 2(10 %)), surgical oncology (N = 1(5 %)), and bone tumour patients (N = 1(5 %)).

Time between preparing to implement SDRN and actual start of SDRN varied between 3 (N = 3) and 20 months (N= 2) (1 = missing). Median implementation time was 8 months. In one hospital, implementation took 72 months. In that hospital, a psychosocial care provider had unsuccessfully started preparations prior to the IKNL-G’s initiative. Once IKNL-G supported this hospital, implementation took 18 months.

Twenty-one respondents (84 %) indicated that a multidisciplinary team was involved, consisting of four (N = 6), three (N = 11), and two disciplines (N = 4). Nurses and psychosocial caregivers participated in 20 teams, allied health caregivers in 13, and medical specialists in 12. Four respondents (16 %) stated that only one discipline (nurses) was involved in the implementation process.

Logistical issues

Twenty-three (92 %) responded that agreements about the logistics of SDRN had been recorded, of which 16 used an IKNL-G template. One said that the logistical process was not documented (1 = missing).

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Of those who recorded agreements, nine answered that agreements were always kept, 11 that agreements were regularly kept, and two that they were occasionally kept (1 = missing).

The nurse gives the patient the DT&PL according to 24 respondents. One indicated that the medical specialist distributes the form during treatment, and the nurse mails the form to the patient during follow-up.

Regarding SDRN frequency and timing, one respondent indicated that SDRN takes place only once, during the first contact with a specialist nurse. The others reported that SDRN occurs more often. Some (N = 14) indicated that it occurs at set moments during treatment (shortly after diagnosis and subsequently at the start, middle, and end of treatment, or when type of treatment changes). Others (N = 6) indicated that it occurs at regular time intervals (e.g. every 3 months). Four answered that the frequency of SDRN depends on the type of cancer and that this was recorded in patient-group specific care pathways. Eight explicitly stated that SDRN (also) occurs during follow-up.

Sixteen respondents (70 %) were satisfied with the frequency of SDRN in their hospital or department. Of these, 81 % had made agreements about frequency and timing and stated that SDRN occurred three times or more often during active treatment and/or follow-up. Six felt it occurred too infrequently, of which three indicated initiative lay with the patient. One respondent stated that SDRN occurred too often (2 = missing).

Instrument

All respondents (100 %) indicated that the DT&PL is or will be used as the screening instrument. The statements with which the highest number of respondents (completely) agreed were ‘supports communication with the patient’, ‘provides insight into problem nature’, and ‘is short, to the point’. The statements with which the highest number of respondents (completely) disagreed were ‘it is no addition to what we already do’ and ‘I find that it burdens patients’ (Table 1).

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Communication

According to 22 respondents, the completed DT&PL is discussed immediately with all patients; one stated that the DT&PL is discussed only when a DT-score is above the cutoff; and one indicated that the DT&PL is discussed only with patients who (maybe) want a referral (1 = missing).

A nurse (specialist) discussed the results with the patient (N = 23); one responded that the medical specialist discussed the results (1 = missing).

Regarding the DT&PL as a communication tool, all respondents agreed with the statement: ‘the DT&PL provides structure to the conversation’, and only 3 agreed with ‘the patient now wants to discuss topics about which I do not feel completely knowledgeable’ (Table 2).

Referral

Twenty-four respondents (96 %) recorded agreements about why, when, and to whom to refer (1 = missing). Seventeen of these used the IKNL-G template. Agreements about referral were always kept according to 13 respondents, regularly kept according to nine, and occasionally kept according to one (1 = missing).

Referral is often determined by a combination of reasons, with a patient’s wish and referral based on the discussion of DT&PL responses being the most often indicated (Table 3).

According to 23 respondents (2 = missing), SDRN led to targeted referrals, meaning referral to a specific psychosocial and/or allied healthcare provider based on the patient’s problems and concerns. Of these, seven replied that SDRN led to more referrals compared to before implementation, six that the number of referrals had not increased, and none indicated that SDRN led to fewer referrals (10 = missing).

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34 Chapter 2 Table 1 Responden ts’ opinions on the D T&PL 1=Agr ee comple tely N (%) 2=Agr ee some wha t N (%) 3=Disagr ee some wha t N (%) 4=Disagr ee comple tely N (%) Missing N Supports c ommunic ation 19(79) 4(17) 1(4) 1 Pr ovides insigh t in to pr oblem na tur e 11(46) 12(50) 1(4) 1 Is short, t o the poin t 10(42) 13(54) 1(4) 1 Is use ful f or scr eening 10(45) 11(50) 1(5) 3 Is easily usable in pr actice 10(43) 12(52) 1(4) 2 Off er s insigh t in to pr oblem se verity 9(38) 13(54) 2(8) 1 Off er s insigh t in to r ef err al wish 10(41) 11(46) 2(8) 1(4) 1 Pr ovides insigh t in to r ef err al t o whom 4(17) 16(67) 3(13) 1(4) 1 Is time-c onsuming 4(17) 9(39) 5(22) 5(22) 2 Is difficult f or pa tien ts 1(5) 8(36) 8(36) 5(23) 3 I find it a bur den 2(9) 5(22) 8(35) 8(35) 2 I find it of no bene fit t o pa tien ts 6(29) 9(43) 6(29) 4 Is no addition t o wha t w e alr eady do 4(18) 9(41) 9(41) 3 I find tha t it bur dens pa tien ts 4(17) 12(52) 7(30) 2

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Table 2

Responden

ts’ e

xperienc

es with discussing the D

T&PL 1=Agr ee comple tely N (%) 2=Agr ee some wha t N (%) 3=Disagr ee some wha t N (%) 4=Disagr ee comple tely N (%) Missing N Pr ovides s tructur e t o the c on ver sa tion 12(50) 12(50) 0(0) 0(0) 1 I no

w discuss only the pr

oblems the pa tien t has check ed off 5(22) 14(61) 3(13) 1(4) 2 I discuss t opics tha t I ne ver or r ar ely discussed be for e 2(9) 12(52) 8(35) 1(4) 2 I no w discuss t opics in mor e dep th than be for e 2(9) 9(39) 8(35) 4(17) 2 It c os ts t oo much time 1(4) 8(35) 10(40) 4(17) 2 The pa tien t no w w an ts t o discuss t opics about which I do not f eel c omple tely kno wledg eable 0(0) 3(13) 10(43) 10(43) 2

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Chapter 2

Table 3 Reasons for referral

Yes N(%) No N(%) Missing N

Patient wants referral 24(100) 1

Based on discussion of DT&PL responses 19(90) 2(10) 4

Problem nature 19(83) 4(17) 2

Score above DT cut-off 14(64) 8(36) 3

Decision of multi-disciplinary team 11(65) 6(35) 8

Patient information

Twenty-one respondents (84 %) developed brochures about SDRN and the DT&PL, 21 created a brochure about the types of psychosocial and allied healthcare offered inside the hospital, and 12 made leaflets about care available outside of the hospital. Nine developed all three brochures.

Evaluation/satisfaction

Fourteen respondents indicated that patient care took longer after SDRN implementation, while nine stated that care took just as much time (2 = missing). Seven respondents completely and 13 somewhat agreed with the statement that understanding of other disciplines’ expertise increased during SDRN implementation. Two respondents somewhat and one completely disagreed with this statement (2 = missing).

The average score about satisfaction with how SDRN takes place in their hospital was 6.5 (N = 22, SD = 0.9, range found 5–8). Significant positive relationships were found between satisfaction with implementation and satisfaction with frequency of SDRN, and keeping logistical agreements. Six other (implementation) process characteristics were not associated with implementation satisfaction (Table 4). Twenty respondents shared what they were satisfied with and 20 what they were unsatisfied with (Box 1). Comments can be organized into those on the SDRN implementation process and on how SDRN presently takes place in the hospital.

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Table 4 Relationships between respondents’ satisfaction with implementation and characteristics of the SDRN (implementation) process.

p-value

Teamleader’s discipline .67†

Length of implementation time .49*

Number of disciplines involved in implementation .34†

Satisfaction with frequency of SDRN .02†

Keeping logistical agreements .03†

Respondents mean score on the DT&PL .20*

Keeping referral agreements .12†

Amount of time (more or equal) required for patient care including SDRN

.64‖

†_{Kruskal-Wallis test;}*_{Spearmans’s rho;}‖_{Mann-Whitney U test}

Box 1 Comments of satisfaction and dissatisfaction

Category Satisfaction Dissatisfaction

Implemen-tation

The way that SDRN was implemented (enthusiasm, dedication, speed, competence, and effort of the care giver; quality of the process; how many patients are screened) (N = 11)

SDRN currently takes place for selected groups of patients. SDRN should also be implemented for patients with other cancers, even when no specialist nurse is involved in their care (N = 12)

Improved communication between care providers (N = 5)

Unclarity on timing and frequency of SDRN (N = 7) Increased knowledge about and

familiarity with SDRN (N = 2)

SDRN should take place

throughout the entire treatment trajectory including hospitalization and follow-up (N = 3).

SDRN in practice

Level of structural attention care providers now give to the patient’s psychosocial experience and the consequent benefit to the patient (N = 5)

Too little time to screen and discuss properly (N = 5)

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Box 1 Continued

DT&PL gives quick insight into patient’s problems and offers a starting point for the conversation with the patient (N = 3)

Differences between nurses and between departments in the attention/importance given to SDRN; resulting in lack of continuity (N = 4)

Patients are very satisfied with the attention for psychosocial care (N = 3)

The decision to give patients a stack of DT&PL’s, with the risk that the patients forget to complete them (N = 3) The DT&PL gives patients better

grip on their situation (N = 2)

Lack of possibilities to complete DT&PL’s on tablets or online (N = 2)

Better communication with the patient (N = 2)

The one to whom the patient turns in a completed DT&PL should preferably discuss responses with the patient (N = 2)

More targeted referrals, meaning referrals to specialized health care providers according to patients’ problems/concerns, and ease of referral (N = 2)

Lack of skills in recognizing problems and lack of

understanding about what steps to take (N = 1)

Medical specialists now also pay attention to patients’ concerns (N = 2)

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Discussion

The present study shows that implementing the Dutch SDRN process according to the IKNL-G’s roadmap is highly feasible. However, care providers are moderately satisfied with how SDRN presently takes place in their hospital.

Feasibility of implementation SDRN

SDRN, consisting of DT&PL completion, patient-caregiver discussion of the responses, referral based on the discussion, and the patient’s wish, occurs in 21 of the 23 hospitals in the north and east of the Netherlands, and in two-thirds of these hospitals, for more than one patient group. This suggests that hospitals and healthcare providers view SDRN as a substantial improvement to oncology patient care. This success rate is high compared to most reports of distress screening guideline implementation 22, 23_{, but in line with two others, who also used a}

pre-developed, detailed implementation strategy 25, 26_{, although different from ours.}

Breast cancer patients are targeted most often for SDRN. This can be explained by the presence in the Netherlands of specialist nurses responsible for these patients during the entire disease trajectory. These nurses were very motivated to implement SDRN, and can be considered early adopters 31_{. Such nurse ‘navigators’}

are often not available for patients with other tumour types such as prostate cancer 32_.

The IKNL-G’s roadmap proved helpful for the implementation process. The adoption of roadmap elements varied between 84 and 100 %. Because of this high adoption rate, we cannot be certain which elements of the roadmap contributed to its success. Clinical experience shows that centralized project management by IKNL-G and the IKNL-G roadmap both provided structure and continuity to implementation. This is underlined by the finding that implementation time was the longest in the hospital that began implementing SDRN before the IKNL-G initiative. Another explanation for the longer implementation time could be that initiative came from a psychosocial caregiver. Normally, their role comes later in the SDRN timeline; carrying out SDRN requires involvement of caregivers directly responsible for oncological treatment and patient care. Therefore, we recommend appointing as team leader a nurse who performs SDRN daily.

University of Groningen Screening of Distress and Referral Need in Dutch oncology practice van Nuenen, Floor Maria