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Assessment of Distress in Palliative Care

Assessment of Distress in Palliative Care



Presentation by Professor White at the 2008 Palliative Care Congress

Presentation by Professor White at the 2008 Palliative Care Congress



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    Assessment of Distress in Palliative Care Assessment of Distress in Palliative Care Presentation Transcript

    • Distress Assessment in Palliative Care Professor Craig A. White B.Sc.(Hons), Clin.Psy.D., Ph.D, C.Psychol., AFBPsS Professor of Psychological Therapies University of the West of Scotland Local Palliative Care MCN Clinical Lead NHS Ayrshire and Arran
    • Overview • What is distress ? • Why is it of potential importance ? • Which ways are most effective for assessment ? • What did you do when introducing a distress management system ? • What are the key observations, learning and recommendations for distress management systems ?
    • Acknowledgements • Dr. Sharon Mulhern • Dr. Esther Black • Mrs Audrey McDonald • Mrs Christine McAskill • Mr Alim • Dr. David Linden • Patients and clinicians
    • Kelly et al. (2006). ‘Measurement of psychological distress in palliative care’. Palliative Medicine, 20, 779-789. • Combined definitions of Ridner and Vachon • Unique discomforting, emotional state experienced by an individual in response to a specific stressor or demand that results in harm, either temporary or permanent to the person. The nature of the experience may be psychological , social and/or spiritual, such that an individual’s ability to cope with the illness its physical symptoms and treatment are effected.
    • NCCN Definition (2004) Distress is an unpleasant emotional experience of a psychological, social, or spiritual nature that may interfere with a patient’s ability to cope with cancer and its treatment. Distress extends along a continuum, ranging from common normal feelings of vulnerability, sadness, and fear to problems that can become disabling, such as depression, anxiety, panic, social isolation and spiritual crisis.
    • Significance of Distress • Distress is often associated with unmet needs in relation to symptom control, emotional support, sleep and communication (Morasso et al., 1999) • Undermines capacity for pleasure, take away a sense of meaning, diminish the ability to connect with others, and overall have a negative effect on quality of life (Kelly et al., 2006) • Higher opioid doses, increased OOH visits and unscheduled admissions (Thompson et al., 2008)
    • Significance of Distress • Effective prevention and relief from distressing symptoms is a high priority for individuals living with an advanced illness and the primary reason to seek care (Lorenz et al., 2004)
    • Policy Recognition ‘All too often, the stress of managing everyday life following diagnosis and treatment is immense; the psychological and emotional impact continues long after the cancer itself is treated, the impact on personal finances can be devastating and the damage to relationships is far more widespread than generally realised’
    • Assessment and Monitoring Systems are Poor • Barriers to disclosure of distress are well recognised (Ryan et al., 2003) • Despite great enthusiasm for development of questionnaires to detect emotional complications, few groups have been able to implement screening (Mitchell et al., 2008)
    • Why have structured approaches to assessment ? • Major discrepancy between symptoms experienced and what is reported (Homsi et al., 2006) • Most clinicians rely upon clinical skills to detect manifestations of distress (Mitchell et al., 2007) • Syndromes at severe end of continuum are often overlooked, under-estimated and consequently under- managed. • Universal acceptance of WHO definition has not led to universal adopteon of indicators of care performance that can be used (Lewin et al., 2008)
    • Ultra short-Screening • Mitchell’s classification of ultra short, short and standard screening – 1-4 items, 2 mins – 5-14 items, 2-4 mins – 15+, 4 mins + • Ultra short methods are best at ruling out depression, anxiety or distress with an accuracy of 85-95% (Mitchell, 2007) • Doesn’t replace the need for skilled communication and comprehensive clinical evaluation (Kelly et al., 2006)
    • Mitchell et al. (2008). Acceptability of common screening methods used to detect distress and related mood disorders - preferences of cancer specialists and non-specialists. Psycho-Oncology, 17, 226-236 • Clinicians Preference for Distress Management Questionnaire • Only one third of cancer clinicians would be prepared to use these ultra short instruments in routine care
    • Homsi et al. (2006) • Interview questions – How are you feeling ? – What symptoms are you having ? • were compared with systematic questioning using a structured survey • Symptoms more likely to be reported if moderate to severe or distressing BUT • Majority of distressing or severe symptoms were not volunteered
    • Homsi et al.
    • • Distress is a recognisable, common and measurable phenomenon among people with progressive incurable physical disease. • Clinicians report a preference to rely on skills for the identification of distress that are not efficient. • Perhaps structured questionnaires would be the answer ?
    • The Distress Thermometer • 10 years ago (Roth et al., 1998) • With checklist 75% in 5 mins to complete (Gessler et al., 2007) • Validity established across range of diagnostic groups (mostly cancer), over 50 studies • Comparisons across measures and determination of sensitivity, specificity, PNV, PPV • .. And with family members (Zwahlen et al., 2008)
    • National Supportive and Palliative Care Guidelines
    • SIGN 84: Management of breast cancer in women Psychological Care Breast cancer services should routinely screen for the presence of distress and risk factors for very high level of distress from the point of diagnosis onwards. MDT’s should have agreed protocols for distress assessment and management. These should include recommendations for referral and care pathways.
    • BLF Distress Management Project To improve the management of distress of people with cancer by the clinical staff of NHS Ayrshire & Arran. – To ensure that mechanisms are in place for the distress experienced by people with cancer within Ayrshire & Arran are assessed, documented and managed. – To provide NHS A&A staff with access to evidence based information on the management of distress among people with cancer. – To provide training opportunities for staff with NHS A&A on the management of psychological distress among people with cancer.
    • • Distress assessment systems are supported by – Research – Policy – Experience • Decision in Ayrshire and Arran to focus on implementation based on data available – 2001-2002 Process of Application – 2003 Funding – 2004-2007 Implementation
    • Phases of Development • Phase 1: Develop a screening tool to assess and monitor cancer related distress. • Phase 2: Develop a management plan to provide staff with access to evidence based information and resources to help manage the source of the patient’s distress. • Phase 3: Embed into the system a format to encourage the communication of distress to healthcare professionals involved in the patients care. • Phase 4: Invite the teams to learn about the system and to use it as part of their routine clinical practice. • Breast, Lung and Urology teams were included in the 3 month pilot. Training was provided for staff.
    • Big Lottery Fund Cancer Distress Management Project In summary: Step 1 Inform patients that their distress is important Step 2 Provide patients with an opportunity, as part of their routine care, to express their distress using a structured evidenced based tool – not all patients find this easy to do. Step 3 Manage distress with evidence based information Step 4 Communicate distress so that all members of the care team are aware of the difficulties faced by the patient and what is being done about it. Step 5 EVALUATION! – is this the right way to go?
    • Distress Screening Systems Need to Take Account of Risk Factors Individual Characteristics Characteristic disease & treatment • Younger • At time of diagnosis and • Single, separated, or widowed recurrence • Living alone • Advanced stage of disease • Children <21 yrs • Poorer prognosis • Economic problems • More treatment side effects • Lack of (& perceived) social • Greater functional impairment support and disease burden • Poor marital or family function • Lymphodema • History of psychiatric problems • Chronic pain • Cumulative stressful life event • Fatigue • Alcohol/substance abuse • Gender (female)
    • Step 1: INFORMING PATIENTS THAT THEIR DISTRESS IS IMPORTANT! Introduce the distress pilot phase to the patient and give information pack + +
    • Step 2 Complete the distress thermometer and review responses. Aim of step 2 1. Assess distress 2. Monitor distress 3. Communicate distress to team Copies
    • Step 3: Complete and action the management plan referring to resource tools if required. Aim of step 3 1. Manage cancer related distress 2. Communicate management to care team Copies
    • Step 4 Send copies of distress thermometer to clinical staff detailed on forms Medical Notes Patient copy Breast CNS Psychosocial Oncology GP practice
    • Resource Example Dealing with Children “how am I going to tell my children”
    • Resource Tools Resource Box CD
    • Pre-Distress Management System Implementation • The majority of respondents reported that current systems were inadequate - for identification and monitoring over time • Across all domains - ie. emotional, physical, practical • 54% reported that distress and source of distress was documented in medical or clinical casenotes • Clinical casenote audit did not identify that these issues were being recorded • The need for training in the assessment and monitoring of cancer-related distress was widely recognized by clinicians and many thought a structured approach to this would be useful (n=41)
    • SIGOPAC Meeting, 2006 • DT as a communication tool • ‘Add ons’ for specific settings • All patients or targetted groups ? • Resistance based on existing assessments • Talking about distress will cause distress
    • Feedback • Thermometer and management plan user friendly (60%) • Very easy or easy to use (64%) • Very effective or effective in assessing and monitoring patient distress (52%) • Resource box was very useful or useful in helping to provide information to help manage patient distress (52%) • Confident in using the distress thermometer, management plan and resource box • Small sample of patients (n=10) helpful for telling staff about what distressing them
    • Patient Experiences • I found that it helped putting in onto paper as sometimes you don’t want to talk about it or bring it up yourself. • It identified the problem and therefore it could be discusssed to help find a solution to ease the distress. I found it very helpful to use and very easy to use.
    • “It’s always the first thing to go under pressure” Gessler’s Case Study at Beth Israel Cancer Center • Most likely explanation in Ayrshire • In total, 1932 thermometers and management plans were distributed to teams • A total of 223 (12%) distress thermometers and 221(11%) distress management plans were returned to the project team • ‘Enthusiastic allies’; ‘Committed leader who believes in system’, ‘Persistence’
    • Issues • Some staff did not believe that it was part of their role • Others felt that they did not have the time to engage with this • Every GP practice in Ayrshire was sent information and resources • GP’s and district nurses reported that they had never been informed of the project or given the opportunity to use the system • The need to spend time dealing with inappropriate behaviour (forms thrown, staff instructed not to co-operate, sabotage behaviours, verbal abuse of project staff)
    • Barriers to Implementation Schofield et al. (2006). “Barriers to the provision of evidence based psychosocial care in oncology”, Psycho-Oncology, (15), 863-872. • Knowledge of best practice • Clinician and patient beliefs and expectations • Valuing psychosocial care as important • Perceived ability to provide best practice • Time • Skills to detect and manage distress • Systems, reminders and resources • Role definition • Psychosocial care network in place • Feedback on performance, rewards for performance, negative consequences
    • This screen allows the user to connect to a source of demographics held in the local SCI Store database. The SCI Store database is updated twice a day from the national CHI database
    • The user can search and select the patient. The SCI Store will provide the national Unique Identifier, CHI.
    • Once selected the user can progress to creating an assessment for the patient.
    • National CHI All locally developed applications use SCI te hic Store as their da ap s Up ogr source of m demographic data De Local SCI Store For non Scottish residents users are still able to manually enter the ic patient details and ph ra og kup m o assign a temporary De L o CHI number Local Databases
    • Distress Assessment Conclusions • Ultra screening useful for rule out purposes, must be linked with agreement for follow on systematic assessment of domains. • Need for linkage with care pathways, skills and resource to engage with what is identified. • Linked with clinical improvement programme that includes organisational development expertise, clear leadership and performance management.
    • Future Developments • Potential benefits in agreed national approach and data sets to assist with benchmarking services and to inform quality improvement work. – Ultra short screen, with agreed follow-ons • Ayrshire and Arran awarded £250,000 to develop roll-out of the system • Move from validation studies to implementation process research (? based on Redman)
    • Thank You Email craig.white@uws.ac.uk