A pilot study of routine screening for distress by a nurse and psychologist in an outpatient haematological oncology clinic Toni Musiello, Glenys Dixon, Moira O’Connor, Deb Cook, Lisa Miller, Anna Petterson, Christobel Saunders, David Joske Dr, Claire Johnson PII: DOI: Reference:
S0897-1897(16)30215-4 doi: 10.1016/j.apnr.2016.09.005 YAPNR 50842
To appear in:
Applied Nursing Research
Received date: Revised date: Accepted date:
27 April 2016 28 July 2016 22 September 2016
Please cite this article as: Musiello, T., Dixon, G., O’Connor, M., Cook, D., Miller, L., Petterson, A., Saunders, C., Joske, D. & Johnson, C., A pilot study of routine screening for distress by a nurse and psychologist in an outpatient haematological oncology clinic, Applied Nursing Research (2016), doi: 10.1016/j.apnr.2016.09.005
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ACCEPTED MANUSCRIPT TITLE A pilot study of routine screening for distress by a nurse and psychologist in an outpatient
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haematological oncology clinic
Distress screening by nurses in outpatient haematology
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AUTHORS
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RUNNING TITLE
Toni Musiello, BSc, MSc, Dphil H. Psych,a Glenys Dixon, MPsych (Clin),a Moira O’Connor, BA
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(Hons), MSc, PhD,b Deb Cook, RN,c Lisa Miller, MBBS, FRANZCP, FaChPM,d Anna Petterson, PhD,e Christobel Saunders, MB BS, FRCS, FRACS,a Dr David Joske, MBBS, FRACP, FRCPA,c,e
School of Surgery
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Claire Johnson, RN, PhDa
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The University of Western Australia
35 Stirling Highway, Crawley, Western Australia, 6009
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School of Psychology and Speech Pathology,
Curtin University -
Kent St, Bentley, Western Australia, 6102
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Department of Haematology
Sir Charles Gairdner Hospital 1 Hospital Ave, Nedlands, Western Australia, 6009
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Department of Psychiatry
Sir Charles Gairdner Hospital 1 Hospital Ave, Nedlands, Western Australia, 6009
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SolarisCare,
Sir Charles Gairdner Hospital
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1 Hospital Ave, Nedlands, Western Australia, 6009
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Corresponding Author Dr Claire Johnson,
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School of Surgery M581 The University of Western Australia -
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35 Stirling Hwy, Crawley, Western Australia, 6009
(Telephone): +61 8 9346 3161 (Fax): +61 8 9346 2416
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[email protected]
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All authors meet the ICMJE recommendations for authorship of a scholarly publications
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Aim
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To explore the: 1) prevalence of distress, type of problems experienced by haematological patients, and referrals for supportive care; 2) effect of demographic and clinical variables on distress, and 3) effect on the time of health professionals conducting the screening in the ambulatory chemotherapy setting.
Methods
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Participants completed the National Comprehensive Cancer Network Distress Thermometer and Problem List and had a follow-up screening discussion with a health professional.
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Results
Conclusions
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Of 68 participants, 40% reported significant distress (≥4) on the Distress Thermometer (mean 3.2, SD 2.4). All patients reported physical problems and 72% reported emotional problems—the major contributors to distress and to time spent with the health professional. Distress was unrelated to age, gender or cancer type. Patients were less likely to have significant distress at the end of treatment than at the beginning (OR=0.15, 95% CI: .03; .72,). Forty patients (59%) were referred to supportive services. The psychologist spent less time with patients compared to the nurse (18 vs 48 minutes, p <.001). The more emotional problems reported, the greater the time spent with the patient (rs=.34, p=.009).
Keywords
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Nurses can appropriately screen for distress and address significant distress reported by haematology patients undergoing chemotherapy without over burdening the nurse or patient.
Distress, Distress Thermometer, Hematological Cancer, Supportive care, Nursing
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A pilot study of routine screening for distress by a nurse and psychologist in an outpatient haematological oncology clinic
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1. Introduction Distress in oncology patients is common, debilitating, multifaceted, and affects well-being.(1, 2) The prevalence of distress in oncology patients typically ranges between 33 and 40%, and in a pooled analysis of over 7000 cancer patients, it was reported that 40% of patients experience significant distress.(3) Benefits of identifying and addressing distress in people diagnosed with cancer include decreased symptom burden, increased patient understanding, communication, treatment compliance and satisfaction.(4) However, less than half of cancer patients with psychological distress are identified and receive effective symptom management.(5, 6) Addressing emotional aspects of distress is particularly important, as depressed patients are three times more likely to be non-compliant with treatment recommendations(7, 8) and depression can negatively affect survival.(8) High need cancer patients such as those with haematological malignancies have high levels of anxiety and depression(9) and have been shown to have unresolved needs 12 months after finishing active treatment,(10) indicating a need to identify and treat issues which could be maintaining distress as early in the treatment pathway as practical. One method of identifying distress in patients is through routine screening.
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2. Background The value of routine screening for distress in oncology continues to be demonstrated in research.(11) In response, regular screening has been advocated by prominent cancer organizations and services(1, 2, 12, 13) and new accreditation standards for hospital cancer centers mandate the implementation of routine screening for distress.(14) No ‘gold standard’ for screening for biopsychosocial distress currently exists. However, previous research has shown that the National Comprehensive Cancer Network’s (NCCN) combined Distress Thermometer and Problem List is a reliable measure of distress, quick to complete, and has been validated in cancer populations.(12, 15, 16) The DT has concurrent validity to the Hospital Anxiety and Depression Scale and the Brief Symptom Inventory,(15, 17, 18) which are widely used without specialist training and are accepted in clinical settings as valid and reliable measures.
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While the importance of screening for distress in oncology patients continues to be acknowledged, there remains a lack of empirical evidence examining the potential costs and benefits to patients and Health Services of introducing routine screening.(19) Snowden et al. (2011) and Fitz (2011) conclude that the DT has been sufficiently validated but future research should focus on its utility in clinical settings in order to understand the complexities of implementation,(20, 21) including issues such as whether it is practical to routinely screen oncology patients, who has the time and skills to administer the screening of patients and if, overall, it would be beneficial to screen. A pilot study was undertaken to screen for distress in patients with haematological cancers receiving chemotherapy in an outpatient setting in Western Australia where routine screening was under consideration. The main objectives were: 1) prevalence of distress, type of problems experienced by haematological patients, and referrals for supportive care; 2) effect of demographic and clinical variables on distress, and 3) time spent by health professional completing screening. 3. Methods This was a prospective, cross-sectional pilot study using a self-report questionnaire administered by either a Registered Nurse (nurse) (N=1) or Clinical Psychologist Registrar (psychologist) (N=1). Ethical approval for this research project was granted by the Sir Charles Gairdner Group Human Research Ethics Committee (2009-157).
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3.1 Patients and setting Patients diagnosed with a haematological cancer attending an outpatient cancer clinic for treatment in metropolitan Perth, Western Australia (WA), (2011 -2012) were invited to participate if they were: 18 years; were fluent in English and receiving chemotherapy.
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3.2 Measurement instruments The 2005 NCCN Distress Thermometer (DT) and Problem List (PL) questionnaire were used to screen patients for self-reported levels of distress and problems currently experienced. The DT measures distress on a score from 0 (no distress) to 10 (severe distress). Recommended cut-off scores to identify clinically significant distress, or ‘caseness’ on the DT vary according to setting and screening objectives.(15, 16) Boyes et al. (2013) suggest a cut-off score on the DT of ≥2 as best for clinical use, ≥3 for detecting cases of anxiety, depression and comorbid anxiety/depression and ≥4 as best for research use. A cut off score of ≥4 to identify significantly distressed patients was selected as appropriate. Scores ≤3 were considered to be a ‘normal’ level of distress for this study.(18) The PL includes physical (e.g. constipation, pain, fatigue); emotional (e.g. worry, sadness); practical (e.g. childcare, transport), family (e.g. dealing with family/children) and spiritual/ existential problems. Under each problem domain is a list that patients can tick to identify which problems are contributing to their distress.
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3.3 Procedure Eligible patients were approached by the nurse or psychologist while receiving chemotherapy and provided with verbal and written information about the research project. Patients who wished to participate provided written consent and answered several demographic questions prior to completing the DT and PL. Once completed, the nurse or psychologist discussed with the patient their level of distress and problems identified and noted the time spent with each patient. For patients reporting ‘normal’ distress levels (≤3 on the DT), the purpose of the discussion was designed to normalize distress and manage concerns through usual supportive care processes within the outpatient clinic. For patients reporting significant distress (≥4 on the DT), either the nurse or psychologist identified with the patient which problems were contributing most to their distress, and provided education and information on managing the problem(s). Where appropriate, the nurse and psychologist used standardized referral pathways to link patients to local services which could include nursing staff, haematological consultants, psychologists, social workers, psychiatrists, and not-for-profit support organizations. Referrals were based on the standardized Western Australian Psycho-social Model of Care.(22) 3.4 Statistical Analysis Descriptive analyses were generated for all variables. Patient characteristics are presented as means and standard deviations, and categorical data are presented as numbers and percentages. Between and within group analyses were performed examining levels of distress, the types and number of problems reported and the time taken by health professionals to conduct screening. This was carried out using t-tests, and chi-square analyses. In order to examine the relationship between distress and demographic and clinical variables, multiple logistic regression analysis was conducted using level of distress (≤3, ≥4) as the dependent variable. A Spearman's rank-order correlation was used to determine the relationship between number of problems and time taken to discuss the DT and PL. Data were analyzed using IBM SPSS Statistics 20. 4. Results Sixty-eight patients consented to participate. A summary of participant characteristics is in Table 1. The mean age was 52 (18 – 84 years).
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(%) (47) (53) (77) (10) (13) (29) (25) (29)
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n 36 32 52 7 9 20 17 20
Male Female Lymphoma Diagnosis Leukemia Myeloma Beginning Chemotherapy Middle treatment time* End * Missing data n=11 (16%) Gender
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Table 1 Participant characteristics (N=68)
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The mean level of distress on the DT and PL was 3.2 (SD 2.4) and 40% of patients had scores indicating significant distress and these patients also reported more problems in all categories on the PL. All patients reported some type of physical problem as a result of their cancer diagnosis and treatment, fatigue being reported most often (n=44, 65%). Forty-eight patients (72%) reported experiencing emotional problems. Emotional distress was most frequently related to anxiety symptoms (i.e. worry (n=33, 49%), fears (n=27, 40%), nervousness (n=22, 32%)) rather than depressive symptoms (i.e. sadness (n=22, 32%), depression (n=18, 26%), loss of interest (n=18, 26%)). Half (n=33, 49%) of patients reported experiencing difficulties in practical problems. Financial problems (n=19, 28%), work (n=15, 22%) and transportation (n=11, 16%) problems were most commonly reported. Eleven (16%) patients reported family problems and one patient reported spiritual/religious concerns as a problem. Patients at the end of their chemotherapy regimen were less likely to be distressed than people at the beginning of chemotherapy (OR=0.15, 95% CI: .03; .72, p=.018) The average time spent with each patient by either the nurse or psychologist was 26 minutes for those scoring ≤3 and 47 minutes for those scoring ≥4 (significant levels of distress). This data was only available for 84 % of the patients. There was no association between the number of physical problems and time taken to discuss the DT and PL but the number of emotional problems was positively associated (rs=.34, p=.009). The psychologist spent less time with patients compared to the nurse (18 vs. 48 minutes; t (49) = -7.2, p <.001). There was no difference in the number of problems reported or the number of significantly distressed participants seen by the nurse or psychologist. Forty patients (59%) were offered referrals to additional services; 25 patients (37%) were referred for physical problems, 19 (28%) for emotional problems, 17 (25%) for practical problems and five (7%) for family problems. Of these, 75% planned to accept the recommended referrals. The majority of referrals (n=30) were to not-for-profit organizations for additional support and information from a cancer helpline, or transportation assistance. Twenty-five patients (37%) were referred to nursing staff for advice in managing the side-effects of treatment. The remaining referrals were to a psychologist (n=16, 24%) or social worker (n=9, 13%). The nurse referred 28 patients to services compared to the psychologist who made 12 referrals (x2(1) = 15.4, p <.001). 5. Discussion The levels of significant distress reported by haematology patients in this study (40%) are consistent with the prevalence of distress in the general cancer patient population (33-40%).(3, 23) Previous research which investigated distress in haematology patients is variable, with the prevalence between 35.5% and 62%.(23), (24, 25) However, two studies reporting higher distress levels than our study were conducted with inpatients,(24) or lymphoma patients only.(25) The study reporting a lower prevalence of distress included patients who had not yet been treated for their cancer.(3, 23) It is possible that receiving active treatment increases patient distress, accounting for the higher level of distress reported in our study. Our findings confirm that the timing of distress is similar for people being treated for a haematological malignancy to those with other cancers: that distress is highest at
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the beginning of chemotherapy treatment, has decreased by the middle and is lowest at the last treatment session.(26, 27)
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Physical and emotional problems reported most frequently in this study, reflect previous research.(24, 28-31) Yamagishi et al. found that oncology patients receiving outpatient chemotherapy reported their distress was maintained by ongoing physical problems such as fatigue and pain.(32) Our study demonstrated that distress levels were directly correlated with the number of problems reported. The greater the level of distress, the more time the nurse or psychologist spent discussing the results with the patient and providing information, advice and referrals to appropriate services. Furthermore, we found that a nurse spent more time discussing the results of the DT and PL, and was more likely to make referrals to other services or health professionals when compared to a psychologist. These findings could be an artifact of the number and types of problems that patients reported and also the inherent skill sets of each allied health professional. Physical problems, which are likely related to physical side effects of treatment, were a major contributor to patients’ distress and it is likely that the nurse felt able to engage with the individual patient to discuss these in more detail compared to the psychologist who could help normalize patient emotional distress and concerns and refer to services if the physical and practical problems had not been resolved. Our findings demonstrate the importance of the availability of a multidisciplinary team to support patients in the haematology setting where problems are often complex and invariably represent a range of issues across the biopsychosocial domains.
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This pilot study aimed to explore factors likely to affect the implementation of routine screening in a single, real-world setting. We did not utilize a control group and thus are unable to determine how many patients had their needs fully met prior to the screening period. The small numbers obtained in this study limits generalizability, restricting power to report by cancer type and other characteristics of interest such as gender and time of treatment. Additionally, we were unable to comment on patients’ baseline levels of distress, nor could we report on follow up data as to whether screening for distress and subsequent discussion and referral, facilitated any longer term effects on distress. Finally, although we found the implementation of routine screening did not lead to a substantial burden for referral agencies, we had small numbers and thus the feasibility of translation into practice would require further investigation with increased patient participation including a variety of cancer diagnoses with follow up data and cost effectiveness analysis for an accurate economic evaluation of the burden on the wider health care providers.
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3 Conclusions Our study showed that nurses can appropriately screen for distress and address levels of significant distress reported by haematology patients undergoing chemotherapy without over burdening the nurse or patient. Further research is warranted to explore the implications for resource utilisation, as well as how different health professionals respond to patients’ concerns. Further research could also investigate the potential of increased patient education post diagnosis and prior to commencing treatment to measure the effect on levels of distress experienced by patients throughout their treatment and explore whether routine screening for distress paired with repeated contact with a nurse throughout treatment mitigates the level of distress experienced. Conflicts of interest: None. Funding: This research was funded by the Sir Charles Gairdner Hospital (SCGH) Research Advisory Committee (2011/12/030). Acknowledgments: The authors wish to thank all of the individuals who took part in this research, the Haematology staff at Sir Charles Gairdner Hospital and the Western Australian Psycho-Oncology Collaborative who supported this research project.
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Highlights • 40% of all patients reported significant distress on the Distress Thermometer • Distress was unrelated to age, gender or cancer type. • The psychologist spent less time with patients compared to the nurse • The more problems reported, the greater the time spent with the patient. • Nurses can appropriately screen for distress and address significant distress
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