MEASURE YOURSELF CONCERNS AND WELLBEING (MYCaW)
What is MYCaW?
MYCaW is an individualised questionnaire designed for evaluating holistic and personalised approaches to supporting people. It only takes a few minutes to complete and can routinely be incorporated into a consultation to understand and prioritise what a person most wants support with. MYCaW allows a more rigorous approach to capturing the voice of service users beyond the anecdotal.
First form - Each person writes down the thing that most concerns them, that they want help with, in a box. MYCaW can record two main concerns in total. The concerns are rated for severity using a simple numerical Likert scale and a person’s wellbeing is also scored.
At follow-up - the original concerns are rescored, and wellbeing is rescored. Two further questions ask if anything else important is happening in a person’s life and what has been most important about the service received.
MYCaW will capture concerns that are medically related, but more often people report concerns that affect their psycho-emotional wellbeing. People also report practical concerns around finance, housing, job status, concerns about their future, their life purpose, relationships and carer burden. All of these concerns may impact a person’s overall wellbeing, yet, many of these topics are not routinely recorded.
MYCaW was initially developed in the holistic cancer settings where people’s concerns were not often about their medical situation. MYCaW has also been used in social prescribing schemes, medical-legal settings, and to improve workforce wellbeing. MYCaW has primarily been used in adult populations (including carers), but also with adolescents and young adults who may be under 18 years old. It is used in service provision in the UK, Israel, Spain, Belgium, Denmark, Canada, and the United States.
Yes. MYCaW scoring was validated against FACIT-SPEx - a 50 item Health-Related Quality of Life measure, which has been extensively researched and used in cancer care. The validation showed that MYCaW scores were as responsive to change as the FACIT-SpEx scores and were able to detect deterioration as well as improvements in scoring.
The concerns stated by service users are analysed using a validated framework, developed using data from several sites in the UK and from international collaborators in Canada. There is one framework for adults using holistic and personalised services and another framework specifically designed to capture the concerns of carers about themselves and the people they care for. These frameworks provide a standardised way of reporting concerns of people who are receiving personalised support in any setting.
Yes it is. Validation of a questionnaire is done to check whether a questionnaire measures what it was designed to measure. The validation of MYCaW has shown that it can identify the unmet needs of service users as well, if not better, than other standard Patient Reported Outcome Measures (PROMs) and the scoring is sensitive to change. Because the service user determines the item to be scored, the tool itself can be used in any setting where a service provider wants to determine and measure how well their service meets the needs of the service users.
MYCaW can be used as a standalone tool but also works well alongside other PROMs. There are several reasons that MYCaW adds value to existing PROMs:
- To understand all service users’ needs:
MYCaW enables 100% of service users' needs to be captured. Our research showed that in a holistic cancer setting, MYCaW picked up at least five concerns from service users that were never asked on the 30 PROMs we crossed checked against that were being used in this area. These items are often less about medical issues and more about what a person can be doing to support themselves.
- To develop a service fully responsive to service users’ needs:
MYCaW aids in identifying and understanding the full range of concerns of people. The amalgamated data on a service user’s concerns can support decision making by service providers when developing services further, enabling a service or organisation to prioritise the type and amount of support to provide across their service. Furthermore, the full range of benefits of your service can confidently be communicated to commissioners and funders using MYCaW.
MYCaW produces both qualitative and quantitative data. Together the mixed methods output of the tool allows for sophisticated data analysis.
MYCaW concerns: These are categorised using standardised frameworks, developed using several datasets of service user and carer concerns. You can then determine the frequency of the different concerns. It helps to show if your provision may or may not match the unmet needs of the services users.
MYCaW concern scores: The analysis of concern score changes ascertain if a person’s initial concern or unmet need has improved at a follow-up appointment compared to the initial score at first consultation. Statistical analysis can be performed to understand when statistically significant and clinically meaningful changes are occurring. This quantitative data also enables benchmarking of services for audit purposes, when expanding services into new locations. All of this informs future pathways of care and efficient use of funding.
MYCaW wellbeing: Similar to the concerns scores, the wellbeing score change is also calculated, and statistical analysis performed to determine statistically significant and clinically meaningful changes.
Is anything else important is happening in a person’s life? This identifies major life events that may affect a person’s wellbeing e.g. relationship breakdown, bereavement, change in job status, house move or holiday. These changes can be very negative or very positive and will impact on the degree of score change as demonstrated in our research. This provides more explanation and understanding on what confounders may be influencing concern score changes
What has been most important about the service/ centre used? This question enables a person to explain what the service has offered that was useful or could have negatively impacted them and acts as a patient reported experience question. The most common responses identify the supportive and caring aspects of the service/ centre and its staff. This is very useful to feedback to staff. Responses can include identifying particular interventions as useful or being listened to and time with other like-minded people.
No, the format of MYCaW is now protected by a licence, to prevent the format being changed and therefore invalidated. There are specific instructions on how to administer it as it was intended by its originator. If you are interested in developing MYCaW in some way, we welcome a chat about your specific needs.
Key MYCaW publications to date:
Paterson C, Thomas K, Manasse A, Cooke H, Peace G. Measure Yourself Concerns and Wellbeing (MYCaW): an individualised questionnaire for evaluating outcome in cancer support care that includes complementary therapies. Complement Ther Med. 2007 Mar;15(1):38-45. https://doi.org/10.1016/j.ctim.2006.03.006
Polley MJ, Seers HE, Cooke HJ, Hoffman C, Paterson C. How to summarise and report written qualitative data from patients: a method for use in cancer support care. Support Care Cancer. 2007 Aug;15(8):963-71. https://doi.org/10.1007/s00520-007-0283-2
Seers HE, Gale N, Paterson C, Cooke HJ, Tuffrey V, Polley MJ. Individualised and complex experiences of integrative cancer support care: combining qualitative and quantitative data. Support Care Cancer. 2009 Sep;17(9):1159-67. https://doi.org/10.1007/s00520-008-0565-3
Frenkel M, Cohen L, Peterson N, Palmer JL, Swint K, Bruera E. Integrative medicine consultation service in a comprehensive cancer center: findings and outcomes. Integr Cancer Ther. 2010 Sep;9(3):276-83. https://doi.org/10.1177/1534735410378663
Harrington JE, Baker BS, Hoffman CJ. Effect of an integrated support programme on the concerns and wellbeing of women with breast cancer: a national service evaluation. Complement Ther Clin Pract. 2012 Feb;18(1):10-5. https://doi.org/10.1016/j.ctcp.2011.05.002
Selman LE, Williams J, Simms V. A mixed-methods evaluation of complementary therapy services in palliative care: yoga and dance therapy. Eur J Cancer Care (Engl). 2012 Jan;21(1):87-97. https://doi.org/10.1111/j.1365-2354.2011.01285.x
Ben-Arye E, Steiner M, Karkabi K, Shalom T, Levy L, Popper-Giveon A, Schiff E. Barriers to integration of traditional and complementary medicine in supportive cancer care of Arab patients in northern Israel. Evid Based Complement Alternat Med. 2012;2012:401867. https://doi.org/10.1155/2012/401867
Ryan AM, Kutob RM, Suther E, Hansen M, Sandel M. Pilot study of impact of medical-legal partnership services on patients' perceived stress and wellbeing. J Health Care Poor Underserved. 2012 Nov;23(4):1536-46. doi:10.1353/hpu.2012.0179.
Briscoe J, Browne N Effects of complementary therapies in cancer care. Nursing Times; 2013 109: 41, 18-20. Available
Polley M, Jolliffe R, Jackson S, Boxell E, Seers H. Penny Brohn Cancer Care:
Service Evaluation of 'Living Well with the Impact of Cancer' Courses,
Penny Brohn Cancer Care, University of Westminster, 2013. Available
Seely D, Weeks L, Flower G, Young S, Pitman A, & Cordell R. Whole Person Care at the Ottawa Integrative Cancer Centre. International Journal of Whole Person Care, 2014 1(1). https://doi.org/10.26443/ijwpc.v1i1.44
Jolliffe R, Seers H, Jackson S, Caro E, Weeks L, Polley MJ. The responsiveness, content validity, and convergent validity of the Measure Yourself Concerns and Wellbeing (MYCaW) patient-reported outcome measure. Integr Cancer Ther. 2015 Jan;14(1):26-34. https://doi.org/10.1177/1534735414555809
Ben-Arye E Aharonson ML, Schiff E and Samuels N. Alleviating gastro-intestinal symptoms and concerns by integrating patient-tailored complementary medicine in supportive cancer care. Clinical Nutrition 2015 34(6) 1215-1223. https://doi.org/10.1016/j.clnu.2014.12.011
Polley MJ, Jolliffe R, Boxell E, Zollman C, Jackson S, Seers H. Using a Whole
Person Approach to Support People with Cancer: A Longitudinal, Mixed-Methods
Service Evaluation. Integr Cancer Ther. 2016 Dec;15(4):435-445. https://doi.org/10.1177/1534735416632060
Lopez G, McQuade J, Cohen L, Williams JT, Spelman AR, Fellman B, Li Y, Bruera E, Lee RT. Integrative Oncology Physician Consultations at a Comprehensive Cancer Center: Analysis of Demographic, Clinical and Patient Reported Outcomes. J Cancer. 2017 Feb 10;8(3):395-402. doi:10.7150/jca.17506
Bromley-By-Bow Centre. Tower Hamlets Social Prescribing Report,2018. Available
Jolliffe R, Collaco N, Seers H, Farrell C, Sawkins MJ, Polley MJ. Development of Measure Yourself Concerns and Wellbeing for informal caregivers of people with cancer-a multicentred study. Support Care Cancer. 2019 doi: 10.1007/s00520-018-4422-8.
Jolliffe RC, Durrant JR, Seers HE, Churchward SF, Griffiths M, Naidoo M, Ben-Arye E, Polley MJ, Zollman C. Impact of Penny Brohn UK's Living Well Course on Informal Caregivers of People with Cancer. J Altern Complement Med. 2018
Sep/Oct;24(9-10):974-980. doi 10.1089/acm.2018.0195
Seely D, & Ennis J. Whole person integrative cancer care in action - an overview of its implementation and patient related outcomes. International Journal of Whole Person Care, 2018. 5(1). https://doi.org/10.26443/ijwpc.v5i1.136
Frostick C, Bertotti M. Social prescribing in general practice. Br J Gen Pract. 2019;69(688):538-539.d 2019 Oct 31. doi: 10.3399/bjgp19X706157
Polley M, Seers H and Fixsen A (2019). Evaluation Report of the Social Prescribing Demonstrator Site in Shropshire – Final Report. University of Westminster, London. Available.
Ijaz N, Rioux J, Elder C, Weeks J. Whole Systems Research Methods in Health Care: A Scoping Review. J Altern Complement Med. 2019;25(S1):S21-S51. doi:10.1089/acm.2018.0499
Schwarze ML, Buffington A, Tucholka JL, et al. Effectiveness of a Question Prompt List Intervention for Older Patients Considering Major Surgery: A Multisite Randomized Clinical Trial. JAMA Surg. 2019 Oct 30;155(1):6–13. doi:10.1001/jamasurg.2019.3778