As it is a potentially fatal illness, cancer can cause immense psychological distress to those living with it.1 When patients need to be hospitalised to establish a diagnosis, begin treatment or receive palliative care, the loss of involvement in family, work or leisure roles can compound the distress experienced.2
Between 35% and 47% of cancer patients experience significant psychological distress, with a higher prevalence in conditions where the risk of death is increased.3,4 Psychological distress can worsen compliance with treatment and physical and social outcomes after treatment, and can even affect health service use and the overall cost of care.5,6 While sadness, anxiety and grief are normal reactive emotions to experiencing cancer,7 when these emotions are experienced with an intensity that worsens engagement with and outcomes of treatment, tailored psychosocial intervention is needed.8
Despite the potential that psychological distress has to worsen patient outcomes, many patients are reluctant to report their feelings of distress to health care providers.9 In many cases, patients are not routinely asked about the presence of distress by medical and nursing staff.10,11 The use of structured screening measures to standardise the assessment of distress is even less common,12 with the consequence that many patients experiencing significant distress are not identified and provided with appropriate psychosocial support.13
To improve the identification and treatment of psychological distress by cancer services, routine screening using validated measures has been recommended by the National Comprehensive Cancer Network through its clinical practice guidelines.14 A number of screening programs have been conducted internationally.13 Well validated psychological measures such as the Hospital Anxiety and Depression Scale (HADS)15 and 18-item version of the Brief Symptom Inventory (BSI-18)16 have been used, but the time required to complete them often restricts their use in providing routine inpatient clinical care.
The Distress Thermometer (DT) and Problem Checklist (PC) were developed to efficiently and reliably measure distress and factors contributing to distress.14-17 Consisting of a single item rated on the scale of 0 (no distress) to 10 (extreme distress), the DT provides a global measure of distress severity. To identify sources of distress, the PC then asks (requiring a yes or no response) if the patient is experiencing problems relating to the five domains: practical, family, emotional, spiritual/religious, or physical.14 The DT has been used with patients undergoing treatment for prostate cancer17 and bone marrow transplant,18,19 and the use of the DT to screen for distress in a North American radiation oncology clinic improved patient satisfaction with the sensitivity of care.20 However, a large pooled analysis of ultra-short screening methods for distress in cancer found that the specificity of measures such as the DT is at best modest.21 The DT was better able to exclude someone as not being significantly distressed than accurately detect someone with significant distress. An additional complication is that there has been no formal validation of the PC. The concurrent use of a more diagnostically valid measure such as the BSI-18 may therefore improve case identification.
The DT was used as the primary screening measure, with the BSI-18 used to assess depression and anxiety in more detail. For the DT, a cut-off score of either 418,20 or 517 out of 10 has been proposed to suggest moderate–severe distress. In our pilot study, as psychosocial staff availability was limited, we used a cut-off of 5 to limit referrals to patients who were more severely distressed. Referral pathways were determined by responses on the PC and BSI-18 as well as answers to a question about previous engagement with psychosocial support staff (Box 1).
The 115 screened patients were aged from 19 to 83 years. Most were male, lived with a partner and were no longer working, and 17% reported experiencing a previous psychiatric illness (Box 2).
A summary of screening test outcomes is shown in Box 3; 51% of patients were identified as being significantly distressed on either the DT or BSI-18. Using a score of 5 out of 10 as the threshold on the DT, 49% of screened patients were significantly distressed. On the BSI-18, 21% were identified as a “case”, with three patients being identified as cases on the BSI but not the DT. Of the significantly distressed patients, 28 (47%) had not been referred for psychosocial support before screening.
On the PC, 33% of patients reported experiencing at least one practical problem, 11% family problems, 80% emotional problems, 4% spiritual or religious problems and 94% physical problems. Box 4 displays the frequency of problems reported by patients with or without significant distress. Independent samples t tests found that a significantly higher number of emotional (mean distressed patients, 3.3 ± 1.8; mean non-distressed patients, 1.3 ± 1.4; P < 0.001) and physical (mean distressed patients, 7.7 ± 3.3; mean non-distressed patients, 4.9 ± 3.2; P < 0.001) problems were reported by distressed patients. The number of practical (mean distressed patients, 0.7 ± 1.1; mean non-distressed patients, 0.4 ± 0.7; P = 0.07), family (mean distressed patients, 0.3 ± 0.6; mean non-distressed patients, 0.1 ± 0.3; P = 0.05) and religious (mean distressed patients, 0.03 ± 0.2; mean non-distressed patients, 0.1 ± 0.2; P = 0.61) problems was not significantly different.
Our finding that 51% of patients of an inpatient haematology and oncology ward were identified as being significantly distressed is consistent with previous estimates.22 Our BSI-18 assessment which showed that 17% of patients were experiencing significantly elevated scores on the depression subscale is consistent with previous research, while our finding of 15% reporting significant levels of anxiety is slightly lower than previous research (24%).4 A significantly higher number of physical and emotional problems were reported by significantly distressed patients, and there was a trend for a higher number of family problems. Distress may therefore be caused by a range of issues, requiring nursing and psychosocial clinicians to work together to address the full range of patient concerns.9 The implementation of routine distress screening and communicating any referrals made based on that screening facilitated the involvement of psychosocial clinicians in patient care. The importance of routine screening is highlighted by our finding that 47% of significantly distressed patients had not been referred for psychosocial support before screening.
In general, nursing and allied health staff were positive about the benefits of the screening project. At least 75% of staff said that screening during the project helped to identify significantly distressed patients and the causes of patient distress, and to direct distressed patients into appropriate psychosocial support. Even more encouraging, almost 94% of staff said that routine distress screening should be incorporated into routine clinical practice beyond the pilot study. As nurse-led distress screening has previously been found to improve patient perceptions of care sensitivity,20 it was determined that the DT would be incorporated into routine nursing practice on the ward; this has continued for at least 2 years since the pilot study.
Psychosocial staffing levels were raised as a potential issue. Routine screening increased referrals to both psychology and social work services. Ensuring sufficient availability of psychosocial staff with different clinical expertise was therefore critical to meeting patients’ needs. A further issue was the level of support required by carers or family members of admitted patients. Previous research has found that 47% of partners of cancer patients experience moderate to severe distress (DT score, ≥ 4).23 With families and partners in many cases providing care and emotional support both during and following the admission, providing psychosocial support to families and partners as well as patients is important for maximising quality of life for the patients and those who support them.24
Our report has some limitations. The first is that the pilot study only ran for 12 weeks, limiting the number of patients screened. However, the proportions of patients identified as being significantly distressed on the DT or reporting significant anxiety or depressive symptoms on the BSI are largely consistent with previous findings.4,18,19 Thus, our study provides further support for the importance of psychological distress as a key area of intervention for cancer services.13
Further discussion about the design of the screening program is also warranted. Because of the limited availability of psychosocial staff on the ward (two social workers and one part-time psychologist), a DT cut-off score of 5 out of 10 was used instead of the 4 out of 10 recommended previously.18,19 We selected the higher score to limit referrals to patients with more severe distress. However, this may have been the reason why three patients identified as cases on the BSI-18 were not identified as cases on the DT. Because of the onerous nature of longer psychological questionnaires for patients who are not distressed, a two-phase screening process has been proposed.21 The first phase could use an ultra-short screening measure such as the DT. Although the use of the accompanying PC has not yet been validated, anecdotal feedback from staff suggested that the PC was useful for identifying why patients were distressed. The second phase of screening could use a more diagnostically valid measure, potentially administered by psychosocial clinicians as part of their initial assessment. Adoption of this two-phase screening approach is dependent on the first phase being adequately sensitive to detect all significantly distressed patients. Careful selection of the screening tool and the threshold used, while considering psychosocial staff availability, is important to ensure that significantly distressed patients are supported, without overloading clinicians and compromising overall care.
1 Referral pathway on the basis of the Distress Thermometer and 18-item Brief Symptom Inventory
* Criteria identifying a “case” on the 18-item Brief Symptom Inventory. |
- Stuart J Lee1
- Lynda J Katona2
- Sue E De Bono2
- Katrina L Lewis2
- 1 Monash Alfred Psychiatry Research Centre, Monash University and The Alfred, Melbourne, VIC.
- 2 The Alfred, Melbourne, VIC.
Funding for this project was provided by the Southern Melbourne Integrated Cancer Service. We thank the staff of Ward 7 East and the Medical Oncology, Haematology, Bone Marrow Transplant and Radiotherapy Units at The Alfred, as well as the patients who were willing to participate in this project. Thanks also to Professor David Clarke for reviewing and providing comments on drafts of the manuscript.
Lynda Katona and Sue De Bono received funding from the Southern Melbourne Integrated Cancer Service for conducting this study; they both also hold ongoing clinical positions with The Alfred hospital. Stuart Lee was employed by The Alfred hospital as a project officer to work on this project. Katrina Lewis holds an ongoing clinical position with The Alfred hospital.
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Abstract
Objective: To describe the outcomes and clinical experience of a 12-week pilot study of routine distress screening of newly admitted patients to an acute haematology and oncology ward.
Design, patients and setting: Bedside measurement of psychological distress, and collection of demographic and clinical data for 115 newly admitted patients in an acute haematology and oncology ward of The Alfred hospital in Melbourne between 5 June and 25 August 2006.
Main outcome measures: Psychosocial distress as measured by the Distress Thermometer and Problem Checklist, and 18-item Brief Symptom Inventory; rate of referral to psychology and social work services in the 12 weeks before and 12 weeks during the pilot study; ward staff feedback on the benefits and challenges associated with routine distress screening.
Results: 51% of patients were identified as being significantly distressed, of whom 47% had not received psychosocial support before screening. A significantly higher number of emotional and physical problems were reported by significantly distressed patients. Referrals to psychology and social work services during the pilot study increased, highlighting that screening directed more patients into care. Staff were generally positive about the ability of routine screening to help them care for their patients, and most agreed that some form of routine screening should continue.
Conclusion: The use of routine distress screening by inpatient cancer services can significantly improve their capacity to offer psychosocial care.