Clinical Psychologist, Vol. 9, No. 2, November 2005, pp. 70 – 73.
Proactive routine monitoring and intervention to reduce the psychosocial impact of cancer therapy
AFAF GIRGIS & ALLISON BOYES Centre for Health Research & Psycho-oncology, The Cancer Council NSW & University of Newcastle, and Hunter Medical Research Institute, University of Newcastle, Wallsend, New South Wales, Australia
Abstract Much of the psychosocial morbidity experienced by cancer patients goes undetected and therefore untreated. This paper describes infrastructure to routinely screen patients for psychosocial problems and provide targeted intervention in the cancer care setting. Cancer patients will complete a psychosocial screening survey via touchscreen computer at three outpatient visits. A report containing a summary of their responses, score interpretation and recommended management strategies will be printed immediately and placed in their file for follow-up by their health care team. Centres will be able to track changes in their patients psychosocial outcomes over time, and in response to changes in service delivery. Benchmarking reports will be produced annually to feed back performance data to individual centres on their patients’ psychosocial outcomes. Keywords: Psychosocial morbidity, cancer, touchscreen computer survey.
The problem It is well established that people with cancer suffer considerable psychosocial morbidity. It is estimated that up to 23% of cancer patients experience significant levels of anxiety, up to 35% experience significant levels of depression (National Breast Cancer Centre & National Cancer Control Initiative, 2003), and up to 40% report moderate or high levels of unmet supportive care needs (Sanson-Fisher et al., 2000). It is also well established that much of this psychosocial morbidity goes undetected (Newell, Sanson-Fisher, Girgis & Bonaventura, 1998; Fallowfield, Ratcliffe, Jenkins & Saul, 2001). Undetected and untreated patient distress can have a deleterious impact on medical outcomes due to lack of compliance with treatment plans, decreased patient satisfaction, and inflated health care costs (National Comprehensive Cancer Network, 2003). Level one evidence highlights the considerable psychological, physical and economic benefits of early identification and intervention to minimise the psychosocial impact of cancer and its treatment through information, emotional support and psy-
chological therapies (individual or group). These benefits include faster recovery, fewer post-hospital complications, and greater ability to cope with difficult treatments (Mumford, Schlesinger & Glass, 1982); reduced anxiety, depression, mood disorders, nausea, vomiting and pain (Devine & Westlake, 1995); and improvements in symptoms, overall quality of life, emotional adjustment and social functioning (Meyer & Mark, 1995). With cancer care increasingly being provided in the ambulatory setting where visits are time-limited, staff often don’t have the time to ask patients about their psychosocial health. Consequently, most psychosocial care is currently offered reactively, that is, when the patient is in a state of crisis. Australia and the United States have led the development of psychosocial practice guidelines; these recommend that all cancer patients should be screened for psychosocial problems at periods of increased vulnerability during the cancer journey, to ensure those in distress are identified early and offered appropriate treatment (National Comprehensive Cancer Network, 2003; National Breast Cancer Centre & National Cancer Control Initiative, 2003).
Correspondence: Professor Afaf Girgis, Director, Centre for Health Research & Psycho-oncology, The Cancer Council New South Wales & University of Newcastle, Locked Bag 10, Wallsend, NSW 2287, Australia. Tel: + 61 2 4924 6372 / + 61 2 4924 6208. E-mail:
[email protected] ISSN 1328-4207 print/ISSN 1742-9552 online ª The Australian Psychological Society Ltd Published by Taylor & Francis DOI: 10.1080/13284200500221102
Routine psychosocial monitoring of cancer patients A number of studies have explored the effectiveness of routine administration of standardised psychosocial questionnaires to patients and the feedback of these results to clinicians, on the process and outcomes of care. Collectively, the results of these studies suggest that feedback about patients’ self-reported well-being is useful to clinicians, increases clinicians’ perceived awareness of their patients’ concerns, and improves doctor-patient communication (Greenhalgh & Meadows, 1999; Espallargues, Valderas & Alonso, 2000; Velikova et al., 2004). A possible way forward To effect improvement in patient management or functioning, a coordinated approach to psychosocial assessment and intervention must be implemented. It is recommended that patients be repeatedly assessed at critical time points over the cancer journey; that summary reports include score interpretation, management strategies and recommended community resources; and that patients be provided with a summary of their responses (Greenhalgh & Meadows, 1999). The challenge is to develop a system that facilitates such a coordinated approach being implemented as part of routine care. Our research team has developed and is currently implementing infrastructure that, when fully implemented, will improve patient-centred psychosocial care through systems which will be introduced at each of three levels: individual patients, individual treatment centres and across New South Wales (NSW). Systems at the patient level Routine assessment of patients’ psychosocial outcomes. Routine screening for distress takes one-quarter of the time and costs one-third as much as conducting clinical psychosocial assessments (Zabora, SmithWilson, Fetting & Enterline, 1990). There is growing evidence that computer-based methods of survey administration are fast, robust, acceptable to cancer patients (including those with little or no computer experience) and feasible to implement in oncology clinics (Newell, Girgis, Sanson-Fisher & Stewart, 1997; Boyes, Newell & Girgis, 2002; Wright et al., 2003). Most importantly, it has been demonstrated that computer-based approaches enable patients’ responses to be collected, scored and transcribed in real-time so the information is available to guide the consultation (Velikova et al., 2004). As part of the infrastructure, touchscreen computer monitors will be installed in a private space in the oncology outpatient waiting room of cancer centres. Cancer patients will be asked to complete a web-based
71
survey three times; at their first treatment visit, midtreatment visit, and first post-treatment review visit. Although all patients will be encouraged to complete the survey at each of the nominated visits, they can elect not to. There are many self-report tools that measure cancer patients’ psychosocial issues across a range of dimensions. The following ‘‘core’’ battery of psychosocial measures have been selected based on the criteria that they cover issues demonstrated to be highly prevalent in cancer patients, are brief, valid, reliable, clinically useful and complement other service monitoring data. . The Hospital Anxiety & Depression Scale (Zigmond & Snaith, 1983) is a 14-item screening survey that classifies patients’ levels of anxiety and depression as low, borderline or clinically significant. Completion time is approximately 5 minutes. . The EORTC Quality of Life Questionnaire (Aaronson et al., 1993) is a 30-item survey assessing physical, role, cognitive, emotional and social functioning; symptoms; global health status and global quality of life. Completion time is approximately 11 minutes. . The short-form of the Supportive Care Needs Survey (Bonevski et al., 2000) is a 34-item survey assessing cancer patients’ perceived need for help over the last month across the following five domains: psychological, health system & information, patient care & support, physical aspects of daily living and sexuality. Completion time is approximately 10 minutes. . The Distress Thermometer (National Comprehensive Cancer Network, 2003) is a visual analogue scale where patients mark on a scale of 0–10 their global level of distress during the past week. A score of 5 or higher flags a significant level of distress that should be referred to psychooncology staff. Completion time is less than one minute. To enhance the acceptability of routine screening of psychosocial outcomes in clinical practice, reducing the number of items completed by all patients is a priority. Hence, the authors are currently undertaking work with reference to item response theory (Van der Linden & Hambleton, 1997) to identify the minimum set of core screening items to be used in the initial screening process. Tailoring psychosocial care to individual patients’ needs. It is well established that much psychosocial distress experienced by cancer patients is undetected and untreated. Oncologists consistently and significantly under-estimate cancer patients’ levels of anxiety and depression and over-estimate their self-reported
72
A. Girgis & A. Boyes
levels of unmet needs (Newell et al., 1998). Inaccuracies in detection of problems inevitably lead to less efficient use of limited psycho-oncology and support services. Directly assessing and then feeding back to oncologists the results of their individual patients’ psychosocial concerns is a proactive strategy aimed at improving patient-centred care and providing more equitable, needs-based access to psychooncology services. Evidence suggests that assessing cancer patients’ quality of life via a touchscreen computer survey in clinical settings, with immediate feedback of patientspecific data to health care providers is feasible, acceptable to both patients and health care providers, and can alter the process of care and some outcomes of care (Velikova et al., 2004; McLachlan et al., 2001). Furthermore, health care providers indicate that the feedback is clinically relevant and useful in identifying issues for discussion (Velikova, Brown, Smith & Selby, 2002; Wright et al., 2003). As part of the infrastructure being implemented, at the completion of each patient’s touchscreen survey, a report summarising his/her responses will be immediately printed and placed in the patient’s medical file (with the patient’s consent) for followup by their health care team. Patients will be given the option of printing an adapted report summarising their responses for their own use. The printed report for the health care team will contain a summary of the patient’s psychosocial outcomes and an alert for those patients requiring some psychosocial care. The level of care required, eg referral to the psychooncology service, referral to a specialised care coordinator, information or support needs, will be determined based on a pre-determined and agreed algorithm of potential responses to the psychosocial measures. This will facilitate psychosocial care resources being allocated in a more systematic and transparent method, thereby ensuring that the small proportion of patients who need the highest level of psycho-oncology services are identified and referred to these services early. Those who do not need such specialised services will be offered other appropriate care or routinely monitored, depending on their level of distress.
outcomes of their cohorts of patients over time and in response to the introduction of new services or changes to existing services. Evidence supports the efficacy of this feedback and reporting strategy in improving clinical practice (Bonevski et al., 1999). Benchmarking of psychosocial outcomes across NSW. To facilitate cancer centres to achieve continued improvement in psychosocial service delivery and planning, the infrastructure will include the production of a number of standardised benchmarking reports to: . feed back performance data to individual centres on their patients’ psychosocial outcomes compared to all other cancer centres combined. . feed back performance data to individual centres on their patients’ psychosocial outcomes compared to a general population based sample of cancer patients identified from the NSW Central Cancer Registry. The reference data necessary for this reporting will be available from the Cancer Survival Study, Australia’s first population-based longitudinal study of cancer survivors’ psychosocial outcomes, currently being undertaken by the authors. Conclusion The infrastructure described in this application will facilitate psychosocial care resources being allocated in a more systematic and transparent way, and is expected to improve patient-centred care and needsbased utilisation of psychosocial resources. In addition, the data collected will identify both the strengths and gaps in psychosocial outcomes across the state, and will be invaluable in informing policy, funding and workforce management decisions, as well as centre-based quality projects to address specific weaknesses. This model can be adapted to other health areas where patient self-report is the primary strategy for collecting information that will assist in guiding patient care.
References Systems at the individual treatment centre level and across NSW Monitoring changes in psychosocial outcomes within cancer centres. As part of this infrastructure, individual cancer centres will be able to produce a centrespecific report containing grouped information about the patients that have completed the survey at each of the three nominated time points, as well as summary data for each patient outcome. This report will enable centres to track changes in the psychosocial
Aaronson, N. K., Ahmedzai, S., Bergman, B., Bullinger, M., Cull, A., Duez, N. J., et al. (1993). The European Organisation for Research and Treatment of Cancer QLQ-C30: A quality of life instrument for use in international clinical trials in oncology. Journal of the National Cancer Institute, 85, 365 – 376. Bonevski, B., Sanson-Fisher, R. W., Campbell, E., Carruthers, A. L. A., Reid, A., & Ireland, M. (1999). Randomized controlled trial of a computer strategy to increase general practitioner preventive care. Preventive Medicine, 29, 478 – 486. Bonevski, B., Sanson-Fisher, R., Girgis, A., Burton, L., Cook, P., Boyes, A., et al. (2000). Evaluation of an instrument to assess the needs of patients with cancer. Cancer, 88, 217 – 225.
Routine psychosocial monitoring of cancer patients Boyes, A., Newell, S., & Girgis, A. (2002). Rapid assessment of psychosocial well-being: Are computers the way forward in a clinical setting? Quality of Life Research, 11, 27 – 35. Devine, E., & Westlake, S. (1995). The effects of psychoeducational care provided to adults with cancer: Meta-analysis of 116 studies. Oncology Nursing Forum, 22, 1369 – 1381. Espallargues, M., Valderas, J., & Alonso, J. (2000). Provision of feedback on perceived health status to health care professionals: A systematic review of its impact. Medical Care, 38, 175 – 186. Fallowfield, L., Ratcliffe, D., Jenkins, V., & Saul, J. (2001). Psychiatric morbidity and its recognition by doctors in patients with cancer. British Journal of Cancer, 84, 1011 – 1015. Greenhalgh, J., & Meadows, K. (1999). The effectiveness of the use of patient-based measures of health in routine practice in improving the process and outcomes of patient care: A literature review. Journal of Evaluation in Clinical Practice, 5, 401 – 416. McLachlan, S. A., Allenby. A., Matthews, J., Wirth, A., Kissane, D. W., Bishop, M., et al. (2001). Randomized trial of coordinated psychosocial interventions based on patient selfassessments versus standard care to improve the psychosocial functioning of patients with cancer. Journal of Clinical Oncology, 19, 4117 – 4125. Meyer, T. J., & Mark, M. M. (1995). Effects of psychosocial interventions with adult cancer patients: A meta-analysis of randomized experiments. Health Psychology, 14, 101 – 108. Mumford, E., Schlesinger, H. J., & Glass, G.. (1982). The effect of psychological intervention on recovery from surgery and heart attacks: An analysis of the literature. American Journal of Public Health, 72, 141 – 151. National Breast Cancer Centre & National Cancer Control Initiative (2003). Clinical practice guidelines for the psychosocial care of adults with cancer. Camperdown, NSW: National Breast Cancer Centre.
73
National Comprehensive Cancer Network. (2003). Distress management guidelines. Pennsylvania: National Comprehensive Cancer Network. Newell, S., Girgis, A., Sanson-Fisher, R. W., & Stewart, J. (1997). Are touchscreen computer surveys acceptable to medical oncology patients? Journal of Psychosocial Oncology, 15, 37 – 46. Newell, S., Sanson-Fisher, R., Girgis, A., & Bonaventura, A. (1998). How well do medical oncologists’ perceptions reflect their patients’ reported physical and psychosocial problems? Data from five oncologists. Cancer, 8, 1640 – 1651. Sanson-Fisher, R., Girgis, A., Boyes, A., Bonevski, B., Burton, L., Cook, P., et al. (2000). The unmet supportive care needs of patients with cancer. Cancer, 88, 226 – 237. Van der Linden, W. J., & Hambleton, R. K. (1997). Handbook of modern item response theory. New York: Springer. Velikova, G., Brown, J., Smith, A. B., & Selby, P. J. (2002). Computer-based quality of life questionnaires may contribute to doctor-patient interactions in oncology. British Journal of Cancer, 86, 51 – 59. Velikova, G., Booth, L., Smith, A., Brown, P. M., Lynch, P., Brown, J. M., et al. (2004). Measuring quality of life in routine oncology practice improves communication and patient wellbeing: A randomised controlled trial. Journal of Clinical Oncology, 22, 714 – 724. Wright, E. P., Selby, P. J., Crawford, M., Gillibrand, M., Johnston, C., Perren, T. J., et al. (2003). Feasibility and compliance of automated measurement of quality of life in oncology practice. Journal of Clinical Oncology, 21, 374 – 382. Zabora, J., Smith-Wilson, R., Fetting, J., & Enterline, J. (1990). An efficient method for psychosocial screening of cancer patients. Psychosomatics, 31, 192 – 196. Zigmond, A., & Snaith, R. (1983). The hospital anxiety and depression scale. Acta Psychiatrica Scandinavica, 67, 361 – 370.
