1. FACET - European Journal of Cancer Care December 2002 Slide One slides available at: www.blackwellpublishing.com/journals/ecc Notes Slide Two Measuring cancer rehabilitation outcomes: using a multidisciplinary tool What is the purpose of rehabilitation programmes? They help cancer patients cope both physically and psychologically with problems that may develop as a result of their cancer or its treatment. Rehabilitation teams typically include the following disciplines: Nurses Doctors Occupational therapists Physiotherapists Speech and language therapists Dietitians Complementary therapists Why is it important to measure the outcomes of rehabilitation programmes? Outcome measures determine the effectiveness of rehabilitation interventions. They should be able to show change in a patients status over time. Measuring rehabilitation outcomes is integral to effective practice. An outcome measures tool serves several purposes: It can provide information to the patient and ensure clarity with patient goals and patient satisfaction. It can can be used to evaluate the impact of an intervention, or treatment. It can be used to establish contracts for rehabilitation programmes with patients and agree their length of stay. It can evaluate care through quantifying patient outcomes. It can indicate areas where service developments are required or additional services deployed. It can indicate an effective use of health care resources. LOWRIE, D 1,. HOFFMAN, C. & VAN DER MOLEN, B. Rehabilitation is an integral part of cancer care. Cancer rehabilitation programmes can help patients maximize their independence and improve their quality of life, regardless of life expectancy. Patients are assessed for their rehabilitation needs, which can include physical, emotional, spiritual and social concerns. A multi-professional team of therapists and specialists working together provides individualised cancer rehabilitation programmes. Consider what your organisation offer in terms of a rehabilitation programme. Are inpatient rehabilitation programmes provided in a specialist setting or as part of care on a general ward? The number of different professional disciplines you work with will, of course, depend on the type of cancer treated and treatment modalities available in your centre.

2. FACET - European Journal of Cancer Care December 2002 Slide Three slides available at: www.blackwellpublishing.com/journals/ecc Notes Slide Four Measuring cancer rehabilitation outcomes: using a multidisciplinary tool (continued) How do you select an instrument to measure outcomes? Choose an instrument that is relevant to your intervention. The instrument should be: Reliable Valid Responsive to change Useful in the clinical setting Practical to use Example: a rehabilitation ward in a UK cancer centre Markus Ward is the new rehabilitation inpatient area at the Royal Marsden Hospital, London that opened in November 2001. The ward provides a welcoming, relaxing and informal environment that is a step between hospital and home. While it is clearly acknowledged that there is a need to measure outcome in rehabilitation, how to do it is less obvious. There are a variety of measurement tools available that have been developed in different settings. The key to selecting an appropriate tool is to be clear about the issues you wish to measure. For a measurement tool to be effective in a clinical setting, consider the following points: How can you introduce the use of outcome measures into routine clinical practice? What educational initiatives will be needed to help members of the rehabilitation team implement the measurement tool? How will you analyse the results? How will the results be used to change practice? Markus Ward provides inpatient facilities, with specialist nurses and rehabilitation therapists to provide support in dealing with the physical and the psychological effects of cancer. Markus Ward currently takes up to ten patients every five-day week. The Nurse Consultant or ward sister assesses each patient to make sure that they would benefit from admission.

3. FACET - European Journal of Cancer Care December 2002 Slide Five slides available at: www.blackwellpublishing.com/journals/ecc Notes Slide Six Measuring cancer rehabilitation outcomes: using a multidisciplinary tool (continued) Markus Ward rehabilitation programmes Patients are assessed individually for their rehabilitation needs, which can include physical, emotional and spiritual concerns. Patients staying on Markus Ward follow individualised cancer rehabilitation programmes provided by staff from the multidisciplinary rehabilitation team. Choosing an outcome measure for Markus Ward There was a need for a validated and reliable tool that could address: Physical concerns and functional ability Emotional well-being and psychological functioning Social and occupational functioning Spirituality, sexuality and altered body image Family well-being and financial concerns Treatment satisfaction Future plans Patients are assessed individually for their rehabilitation needs. Programmes are then planned to help patients make the most of their functional ability following problems that may develop as a result of their cancer or its treatment. The aims of the programmes are to help patients return home better able to cope with the ongoing challenges of living with cancer. In addition to interventions from therapists such as physiotherapists, occupational therapists, dietitians and speech and language therapists, patients may also be offered therapies such as relaxation, massage, art therapy, and psychological and spiritual support. Some patients may also be offered strategies to cope with cancer and be taught self-help techniques. The rehabilitation team considered various quality of life issues when selecting a tool for use in cancer rehabilitation. In addition, the tool needed to be validated and reliable. Using outcome measures in your practice is a way of evaluating the care you are providing for your patients. What instrument, if any, are you currently using to measure outcomes? How effectively does it measure the outcomes of your rehabilitation interventions? If you are not using an outcome measure, think about how it could enhance your practice. Consider a number of tools that could be appropriate in your setting. You will then need to examine them to see if they fit your criteria.

4. FACET - European Journal of Cancer Care December 2002 Slide Seven slides available at: www.blackwellpublishing.com/journals/ecc Notes Slide Eight Measuring cancer rehabilitation outcomes: using a multidisciplinary tool (continued) Canadian Occupational Performance Measure (COPM) It enables clients to specify functional goals that are important to them. Following the rehabilitation process, it measures clients perceptions of the changes in their performance in and satisfaction with their chosen functional tasks. Choice of outcome measure for Markus Ward A number of outcome measures were reviewed for use on Markus Ward including a variety of nursing assessment tools. The Canadian Occupational Performance Measure (COPM) was chosen for its client centred quality and holistic parameters. COPM 2 was developed as a result of discussions between the Canadian Association of Occupational Therapists and the Department of National Health and Welfare in Ottawa in 1980. It is now used by multidisciplinary teams in many countries and has been translated into a number of different languages. It is a patient-centred measure which detects change in a patients self-perception of task performance over time. COPM is administered in a five step process using a semi-structured interview conducted by the health professional together with the patient and/or caregiver. The five steps of administration are: Problem identification Problem weighting Scoring Re-assessment Follow-up The perfect tool to measure outcomes probably does not exist and you will need to consider the specific needs of your own rehabilitation unit. The staff on Markus Ward decided that the Canadian Occupational Performance Measure (COPM) would best capture the breadth of possible rehabilitation outcomes. It is a reliable and validated patient centred outcome measure. It measures only the problem areas considered by the patient to be worth examining in the areas of self-care, productivity and leisure i.e. issues of lifestyle. COPM is not restricted to specific age groups, disabilities or cognitive levels. It is sensitive enough to detect change in performance and it considers the subjective data of patient satisfaction.

5. FACET - European Journal of Cancer Care December 2002 Slide Nine slides available at: www.blackwellpublishing.com/journals/ecc Notes Slide Ten Measuring cancer rehabilitation outcomes: using a multidisciplinary tool (continued) Using COPM Self-care –Personal care –Functional mobility –Community management Productivity –Paid/unpaid work –Household management –Play/school Leisure –Quiet recreation –Active recreation –Socialisation How COPM was implemented on Markus Ward Two additional categories were added to ensure that COPM could be used effectively by the whole rehabilitation team. The Occupational Therapy team designed and implemented an education programme to promote awareness of the measure amongst the rehabilitation team and train the Rehabilitation Nurses to use it. Using the COPM as an initial assessment establishes the therapeutic relationship between the patient and the health professional. It can help focus on the issues that the patient feels are important which in turn, helps to establish appropriate interventions. The health professional interviews the patient about daily activities in self-care, productivity and leisure. The patient is first asked what daily activities they wish to do or need to do. They are then asked to identify which of these activities they find difficult to do to their satisfaction. The five most important problems are recorded and rated for performance and satisfaction using scoring cards. Re-assessment occurs at a time agreed between the assessor and the patient, when the patient is asked to rate each problem on performance and satisfaction again. While the COPM is designed for use by occupational therapists, some multidisciplinary teams have used the COPM as an assessment tool to identify the patients concerns when other members of the rehabilitation team need to be involved. The rehabilitation team was granted permission to use the copyrighted COPM by its chief author. Although the original COPM form cannot be altered, by using an additional sheet of paper, other areas of care relating to the different disciplines can be explored and scored in the same way. These areas can be identified by the various professional disciplines wishing to use the tool. The rehabilitation team on Markus Ward added two further categories, Mobility & Transfers and Communication. The occupational therapists implemented teaching sessions for all members of the multidisciplinary team. Team members initially joined the occupational therapists when assessments were performed, in order to gain confidence and competency in using the tool.

6. FACET - European Journal of Cancer Care December 2002 Slide Eleven slides available at: www.blackwellpublishing.com/journals/ecc Notes Slide Twelve Measuring cancer rehabilitation outcomes: using a multidisciplinary tool (continued) Review of rehabilitation outcomes on Markus Ward An interim review of rehabilitation outcomes took place after three months. Clinically significant positive changes in performance and satisfaction were achieved in areas of self-care or functional mobility and transfers. Outcomes need to be improved with regard to productivity and leisure goals. Conclusions: selecting a tool to measure rehabilitation outcomes Decide on what you want to measure. Identify what tools may be appropriate to your clinical setting. Agree on an outcome measurement tool. Decide on how will you implement the tool. Review the use of the tool after an agreed period of time. Decide on a strategy for using the results to change practice. The COPM is being used for a trial period of six months before being formally reviewed. An interim review of rehabilitation outcomes took place after three months. Out of the review came recommendations for the future. These included the need to: Maximise rehabilitation resources to improve performance outcomes. Improve patients therapeutic goals. Improve co-ordination and communication. Increase completion rate of and clarity of information from the COPM. Monitor progress frequently. Initially a variety of tools were considered including the Enderby Therapy Outcome Measure, the COPM and other nursing assessment tools. The nursing assessment tools were not felt to adequately meet the breadth of perspective from the multi-professional team. The COPM was chosen because of its holistic, patient focus. In addition, it had been validated and was proven to be a reliable tool. A timetable was set for further education of staff and further in-depth training for members of staff using the tool. The tool will be audited after six months, to evaluate appropriateness, the benefits to patients rehabilitation and the perceptions of patients and staff.

7. FACET - European Journal of Cancer Care December 2002 slides available at: www.blackwellpublishing.com/journals/ecc Measuring cancer rehabilitation outcomes: using a multidisciplinary tool (continued) Literature and other information sources Doyle, D., Hanks, GWC. & MacDonald, N. (1983) Oxford Textbook of Palliative Medicine OUP, Oxford. Enderby, P. (1998) Therapy Outcomes Measures Singular Publishing Group, London Law, M., Baptiste, S., Carswell, A. et al (1994) Canadian Occupational Performance Measure (2 nd Ed.) Canadian Association of Occupational Therapists, Toronto. Law, M., Baptiste, S., Carswell, A. et al (1990) Canadian Occupational Performance Measure: An outcome measure for occupational therapy. Canadian Journal of Occupational Therapy. 57(3): 82-87. Footnotes 1 Dan Lowrie is a Senior Occupational Therapist working in the Markus Centre, The Royal Marsden NHS Trust, London, UK. Caroline Hoffman is the Nurse Consultant in Cancer Rehabilitation at The Royal Marsden NHS Trust, London, UK. Beverley van der Molen is the Patient Information Services Manager at The Royal Marsden NHS Trust, London, UK. Correspondence address: Daniel.Lowrie@rmh.nthames.nhs.uk 2 Further information about the Canadian Occupational Performance Measure (COPM) can be found at www.caot.ca/copm/