Shared decision-making about treatment for colorectal cancer: The perspective of older patients

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1 Shared decision-making about treatment for colorectal cancer: The perspective of older patients Dr Jaqualyn Moore, Dr Karen Gillett, Harriet Watson, Claire McGilly, Dr Cath Taylor

2 Background Shared decision making (SDM) The White Paper, Equity and Excellence: Liberating the NHS set out the Government s plan for a patient centred National Health Service based on the principle of shared decision making: no decision about me without me (DOH, 2010, p. 13). SDM is a process whereby: patients are actively involved in shared decision making and supported by healthcare professionals to make fully informed choices about investigations, treatment and care that reflect what is important to them. (NICE, 2012)

3 Older Adults and colorectal cancer Approximately 40,000 new cases of colorectal cancer each year in UK Almost 75% occur in people over 65 (Cancer Research UK, 2014) Half of people with colorectal cancer survive for at least 5 years but older people have a worse prognosis than younger patients (Dekker, 2011) Older people increasingly likely to have multiple health problems, lack social support and find travel difficult (DOH, 2012) Most common treatment is surgery (80%) but may also receive chemotherapy after surgery (Cancer Research UK, 2014)

4 What existing research tells us UK cancer survival rates for older people are the worst in Europe (Moller et al, 2011) Overall cancer survival rates are improving but less so for people aged 74 to 84 and survival for 85+ is getting worse (Moller et al, 2011) Cancer clinical trials often exclude older people on the basis of age or morbidity (Seymour et al. 2011) Older people less likely to have their symptoms fully investigated and are less likely to be referred for essential treatment (British Geriatric Society, 2011 survey of 200 geriatricians) Lack of research into the influences of emotional and social factors on treatment decision making (Tariman et al, 2010) Often incongruence between family and patient if family make decisions on part of patient (Siminoff et al, 2006) A UK survey of medical oncology trainees (n=64) found that 21% confident of ability to treat older patients compared to 81% confident to treat younger patients (Kalsi et al, 2013)

5 Treatment decision making Patients should have the opportunity to make informed decisions about care and treatment in partnership with health professionals and families (NICE, 2011: Guidelines for colorectal Cancer Treatment) Diagnosis and treatment of colorectal cancer involves discussion of bodily functions and invasive procedures Intensive cancer treatment improves clinical outcomes but potentially decreases quality of life (DOH. 2012) Patients may focus initially on being cancer free and getting through surgery rather than longer term implications (Park et al, 2014) Post cancer treatment there may be uncertainty about future, change in bowel function and altered body image

6 Treatment decision making contd. Dekker et al. (2011) compared population survival data for 9397 patients with colorectal cancer in the Netherlands. They found that patients over 75 tended to present later, have more comorbidity, receive less aggressive treatment, and be more likely to discontinue treatment early If older patients survived the first year, they had the same cancer related survival as younger patients (Dekker et al. 2011)

7 Basis for this research Matthias et al. (2013) argue that a tendency of research into SDM to focus on easily observable aspects of the decision making process which misses the complexity Johnson (2012) recommends research to develop an understanding of the treatment decision-making process for older patients to facilitate the provision of relevant information and support Strohschein et al. (2011) suggest research needs to focus on the patient s actual experience of health related decisions and on understanding the structure, content, influencing factors, and consequences of patient decision making itself

8 The missing piece? Geriatrician? Family Other Health Professionals GPs Patient perspective Oncologists Surgeons Guidelines /Protocols

9 Study aim To understand the experience of treatment decision making from the perspective of the older person with colorectal cancer

10 Eligibility Inclusion criteria Age: We purposively selected patients from the young old (65-74), old (75-84) and older old (85+) age ranges Diagnosis of potentially curative colorectal cancer Patients who had the option of treatment With recent experience of treatment decision making (past 18 months) Those who health care professionals judged to have the capacity to give informed consent to participate in research

11 Study participants by age/gender Age Male Female Totals Totals

12 Methodology Qualitative interview study Patient and public involvement study, information sheet and topic guide reviewed by patient research group Beating Bowel Cancer Proportionate Review - NHS Research Ethics Committee Potential participants initially approached by Colorectal Clinical Nurse Specialist and given information sheet Contacted by researcher who answered questions and if they wanted to go ahead arranged time for interview Interviews conducted in person or by telephone Interviews lasted between 35 and 90 minutes

13 Framework approach to analysis (Ritchie & Lewis, 2003) Data management and interpretation sequential with the aim of ordering data to facilitate interpretation Initial themes based on topic guide Interpretation involved: 1. Thematic analysis and categorisation e.g.. Information sources, outcomes of shared decision making 2. Explanatory analysis e.g. Factors influencing the decision made, what influences the way people feel about the decision made

14 Findings Factors influencing decisions Previous experience of treatment (especially chemotherapy) Fears about treatment (chemotherapy, colostomy, ileostomy) Age I have had a good life Previous experience having cancer Family history of cancer It was inevitable Family wishes Concerns about own ability to cope Wanting to live Quality of life don t want to be sick and bald Happy to trust the consultant to make the right decision Comorbidity

15 Treatment pathways after diagnosis No treatment Surgery Further treatment No further treatment patients choice No further treatment medical decision Patient sometimes unaware of decision making process happy with decision Patient more aware of decision making process happy with decision Patient less clear about decision making process not always happy with decision

16 Treatment pathways after diagnosis No treatment Further treatment Patient less aware of decision making process happy with decision 'I have no family which is a terrible disadvantage in this situation and I wouldn t Surgerywish that on anybody, you really need either a supportive partner or family or something because No further you are out No there further in the wilderness treatment and all my treatment friends that I patients spoke to choice were very medical against decision my ideas, they thought I should have the operation which of course upset me Patient more aware of more decision than making ever. I just wanted decision to making somebody process happy to say with you must process do not what s always decision happy with decision right for you (Julia, 79) Patient less clear about

17 Treatment pathways after diagnosis No treatment Further treatment Surgery If you want to hang around a bit you ve got to No further No further go along treatment with what the treatment hospital patients says choice (Alan 79 medical decision married) Patient sometimes unaware of decision making process happy with decision Patient more aware of decision making process happy with decision Patient less clear about decision making process not always happy with decision

18 Treatment pathways after diagnosis No treatment Surgery There is no way they did anything Further I did not treatment want them to do (Amy 84, widowed) No further treatment patients choice No further treatment medical decision Patient less aware of decision making process happy with decision Patient more aware of decision making process happy with decision Patient less clear about decision making process not always happy with decision

19 Treatment pathways after diagnosis No treatment Surgery They said I am not well enough to stand chemotherapy and so the position is I am left as I am. I don t feel very happy about that I think about the end all the time (Iris, 83. Single) Further treatment Patient less aware of decision making process happy with decision No further treatment patients choice Patient more aware of decision making process happy with decision No further treatment medical decision Patient less clear about decision making process not always happy with decision

20 Factors influencing feelings about decision Family support Prognosis Effects of cancer and treatment Ownership of the decision Social support Overall health Medical follow up (or lack of)

21 Limitations??geriatrician Family Other health professionals GPs Patient perspective Oncologists surgeons Guidelines /protocols

22 Conclusion and what next? Many older people have clear ideas about what treatments are acceptable to them Most older people are cognitively intact and able to make their own decisions We were unable to answer the question posed by Macmillan Cancer Support regarding don t offer or don t want. However, we found a number of our participants did not want treatment What next? Exploring the older person s preconceptions of chemotherapy

23 References Cancer Research UK (2014) Treating Bowel Cancer at documents/generalcontent/treating-bowel-cancer.pdf (accessed 19th August 2014). Dekker, J., van den Broek, C., Bastiaannet, E., van de Geest, L., Tollenaar, R, and Liefers, G. (2011) Importance of the First Postoperative Year in the Prognosis of Elderly Colorectal Cancer Patients Annals of Surgical Oncology, 18: Department of Health (2012) The Impact of Patient Age on Clinical Decision Making in Oncology, (accessed 19th August 2014). Kalsi, T.; Payne, S.; Brodie, H.; Mansi, J.; Wang, Y.; Harari, D. (2013) Are the UK oncology trainees adequately informed about the needs of older people with cancer? British Journal of Cancer, 108 (10): MacMillan Cancer Support (2012) The Age Old Excuse: The under treatment of older cancer patient at Documents/GetInvolved/Campaigns/AgeOldExcuse/AgeOldExcuseReport-MacmillanCancerSupport.pdf (accessed 19th August 2014). Matthias, M., Salyers, M., Frankel, R. (2013) Re-thinking shared decision-making: Context matters, Patient Education and Counseling, 91 (2): Moller, H., Flatt, G., Moran, A (2011) High cancer mortality rates in the elderly in the UK, Cancer Epidemiology, 35 (5): NICE (2011) Colorectal cancer: The diagnosis and management of colorectal cancer, NICE guidelines [CG131] NICE (2012) Shared decision making: Quality statement at experience/shareddecisionmaking.jsp (accessed 19th August 2014). Park, J., Neuman, H., Bennett, A., Polskin, L., Phang, P., Wong, W., Temple, L. (2014) Patient expectations of functional outcomes after rectal cancer surgery: a qualitative study, Diseases of the Colon and Rectum, 57 (2): Seymour, M., Thompson, L., Wasan, H., Middleton, G., Brewster, A., Shepherd, S., O Mahony, S., Maughan, T., Parmar, M., Langley, R. (2011) Chemotherapy options in elderly and frail patients with metastatic colorectal cancer (MRC FOCUS2): an open-label, randomised factorial trial, Lancet; 377 (9779): Siminoff, L., Rose, J., Zhang, A., Zyzanski, S. (2006) Measuring discord in treatment decision-making; progress toward development of a cancer communication and decision-making assessment tool, Psycho-Oncology, 15 (6), Strohschein, F., Bergman, H., Carnevale, F., Loiselle, C. (2011) Patient decision making among older individuals with cancer, Qualitative Health Research, 21 (7): Tariman, J., Berry, D., Cochrane, B., Doorenbos, A., Schepp, K. (2010) Preferred and actual participation roles during health care decision making in persons with cancer: a systematic review, Annals of Oncology, 21 (6):

24 Contact details/for more information Dr Karen Gillett +44 (0)

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