Self-management in people living with and beyond cancer

Self-management in people living with and beyond cancer

Self-management in people living with and beyond cancer in a rural and urban setting: a comparative mixed methods study Excellent Ageing Event, University of Lincoln 13th January 2017 David Nelson, Macmillan Fellow Mental Health, Health and Social Care (MH2aSC) Research Group School of Health & Social Care [email protected] www.lincoln.ac.uk Background

Two million people living with and beyond cancer in UK and this is set to rise to 4 million by 2030 (Maddams et al, 2012). Many survivors have unmet needs particularly at end of treatment (Armes et al, 2009). Shift in thinking of cancer as an acute illness to a chronic one (Yaganti, 2015) has led to a growing body of work around self-management and people affected by cancer. Increases in survivorship, ageing population, have personal and economic implications for the patient, their family and wider healthcare system. PABC who reside in rural areas report greater anxiety and depressive symptoms, emotional problems and poorer mental functioning compared with those in non-rural areas (Burris & Andrykowski, 2010). Need to travel for treatment cause practical, emotional and financial problems (Butow et al, 2012). Physical and emotional isolation Rural setting can be detrimental to health, can also promote health eg: availability of outdoor recreation,

peaceful and quiet environment (Winters et al, 2006). We lack research exploring whether living in rural or urban area has a significant bearing on cancer survivors ability to manage their health following medical treatment. www.lincoln.ac.uk Defining self-management Awareness and active participation by the person in their recovery, recuperation and rehabilitation, to minimise the consequences of treatment, and promote survival, health and well-being (DH, Macmillan & NHS Improvement, 2010). Managing the consequences of cancer and its treatment, understanding how and when to seek support, recognising and reporting signs and

symptoms of possible disease progression and making lifestyle changes to promote health, wellbeing and survival (Foster et al, 2014) SM practices into the following six broad categories; support groups, diet, exercise, psychological therapies, complementary and alternative medicine, and spirituality and religious practices (Shneerson et al, 2015). www.lincoln.ac.uk Macmillans Nine Outcomes Macmillan Cancer Support (2014) Cancer in the UK 2014: State of the nation report

www.lincoln.ac.uk The Recovery Package Macmillan Cancer Support (2013) The Recovery Package www.lincoln.ac.uk Aims Identify and compare health promoting behaviours in cancer survivors from a rural and urban setting Identify and compare patient activation in cancer survivors from a rural and urban setting

Identify and compare self-management self-efficacy in cancer survivors from a rural and urban setting To explore the relationship between health promoting behaviours, patient activation and self-management self-efficacy To identify, and explore the barriers and facilitators to selfmanagement in a rural and urban setting. www.lincoln.ac.uk Why? Findings used to help support PABC at local and national level Increased understanding of the rural and urban context and whether geography enables or prevents effective self-management. Identify groups most in need of support to self-manage and a better understanding of their needs.

More robust evidence base for providing tailored and appropriate support. Potential to inform future interventions. www.lincoln.ac.uk Study Design and Methods and Data Analysis Mixed methods design Phase 1 (Quant) followed by Phase 2 (Qual) Self-completion postal questionnaire Collect information on demographics (age, gender, socio economic status etc.) POST CODE to code for rural/urban according to ONS classifications Validated instruments (Health Promoting Lifestyle Profile ii; PAM-13; Cancer Survivors

Self-Efficacy Scale) Qualitative interviews purposively select based on survey responses. Approx. 30 or until data saturation. Surveys coded upon receipt and SPSS used to analyse the data. Qualitative data will be recorded, transcribed verbatim and analysed thematically using Nvivo. www.lincoln.ac.uk Recruitment Recruited via Cancer Centre staff at ULHT and UHL

www.lincoln.ac.uk Recruitment Study purpose and inclusion/exclusion criteria explained to Cancer Centre Staff. Recruit on behalf of research team using patient database. Research team has no access to identifiable data. Participants assigned a unique ID code. Check patient vital status and cross ref NHS no. with PAS for address. Research team provides a research pack to both cancer centres. Reminder letter sent after two weeks. No further correspondence after. Survey gives opportunity register interest in qual work via reply slip with name and contact details.

www.lincoln.ac.uk Survey measures Health Promoting Lifestyle Profile II (Walker et al, 1995) 52 item measure that intends to assess behaviours that are linked with health promoting lifestyle, and how frequently the individual practices these behaviours. Also broken down into six subscales; health responsibility, physical activity, nutrition, spiritual growth, interpersonal relations and stress management. PAM-13 (Hibbard et al, 2005) assesses the persons knowledge, skills and confidence in managing their own health and health care. 4 point likert scale. (eg: know how to prevent problems with my health, ability to maintain lifestyle changes) The Cancer Survivorship Self-Efficacy Scale (Foster et al, 2013) used to measure cancer related self-efficacy. Respondents rate their confidence to perform SM behaviours (eg:

confidence to access info about cancer and effects of the diagnosis and treatment, contact doctor about problems caused by cancer/treatment). www.lincoln.ac.uk Steering Group Oversee the research process. Meet three times a year (University of Lincoln)

Dr Ros Kane, Dr Ian McGonagle, Dr Christine Jackson (University of Lincoln) Dr Cathy Henshall (Oxford Brookes) and Dr Jan Pascal (Keele) Senior Staff from Macmillan in East Midlands Macmillan Lead Cancer Nurse (ULHT) Public Representative www.lincoln.ac.uk Patient and Public Involvement The importance and value of involving members of the public and healthcare service users in research. Appropriate and relevant materials for target population

Service user sitting on the Steering Group Recruited 5 volunteers to comment on research materials feedback and comments have been fed into updated versions. All participants given the opportunity view the results of the study (online or hard copy) Disseminate findings through local support groups in the Lincolnshire and Leicestershire www.lincoln.ac.uk Ethical considerations Ethical approval from School and HRA. Participation is voluntary and free to withdraw (up to the point of analysis) Criminal or other disclosures?

Returning the questionnaire implies informed consent. Also take written consent prior to qualitative interview. All personal data (digital and paper) treated confidentially and stored securely in locked metal filing cabinet. 5 years then destroyed. Anonymised data may be shared with external partners where appropriate. Questionnaires individually coded with unique ID code on front page (by Cancer Staff). Data is anonymised and consistent pseudonyms used throughout qual transcripts/analysis. Contact details for qualitative work stored separately. Participant distress during interview Macmillan contacts, relevant literature. If very upset should stop the interview. Universitys Lone Worker Policy www.lincoln.ac.uk

Dissemination Final Study Report presented and made available to primary funder Macmillan Cancer Support. Made available on University of Lincolns Institutional Repository ( http://eprints.Lincoln.ac.uk). Notify participants of findings (online and hard copy). Disseminated locally with Macmillan Cancer Support. Appropriate academic journals and national/international conferences. PhD Thesis! www.lincoln.ac.uk the next 12 months

School/ HRA Ethics submission Jan/Feb 2017 Expected approval Feb/March 2017 Patient recruitment March 2017 Quant data collection March/April 2017 Quant data analysis April July 2017 Qual recruitment July/August 2017 Qual data analysis Nov Jan 2018 www.lincoln.ac.uk References Armes, J., Crowe, M., Colbourne, L., Morgan, H., Murrells, T., Oakley, C., Palmer, N., Ream, E., Young, A. and Richardson, A. (2009) Patients supportive care needs beyond the end of cancer treatment: A prospective, longitudinal survey, Journal of Clinical Oncology, 27(36), pp. 6172

6179. doi: 10.1200/JCO.2009.22.5151. Burris, J. & Andrykowski, M. (2010) Disparities in mental health between rural and nonrural cancer survivors: A preliminary study PsychoOncology, 19(6), 637-645. Department of Health, Macmillan Cancer Support and NHS Improvement (2010) National Cancer Survivorship Initiative Vision, (May). Foster, C., Breckons, M., Hankins, M. and Fenlon, D. (2013) Developing a scale to measure self-efficacy to self-manage problems following cancer treatment, Psycho-Oncology, 22, (S1): 16. Hibbard, J. H., Mahoney, E. R., Stockard, J. and Tusler, M. (2005) Development and testing of a short form of the patient activation measure, Health Services Research, 40(6 I), pp. 19181930. doi: 10.1111/j.1475-6773.2005.00438.x. Maddams, J., Utley, M. and Moller, H. (2012) Projections of cancer prevalence in the United Kingdom, 2010-2040, Br J Cancer, 107(7), pp. 11951202. doi: 10.1038/bjc.2012.366. Macmillan Cancer Support (2014) Cancer in the UK 2014: State of the nation report Macmillan Cancer Support (2013) The Recovery Package Shneerson, C., Taskila, T., Greenfield, S. and Gale, N. (2015) A survey investigating the associations between self-management practices and quality of life in cancer survivors, Supportive Care in Cancer, 23(9), pp. 26552662. doi: 10.1007/s00520-015-2626-8.

Walker, S., Sechrist, K., & Pender, N. (1995). The Health-Promoting Lifestyle Profile II. Omaha: University of Nebraska Medical Center, College of Nursing. Winters et al (2006) The rural context and womens self-management of chronic health conditions Chronic Illness, 2, 273-289 Yaganti, S. (2015) Cancer as a long term condition: A review of Cancer Care Reviews and a proposed model for London www.lincoln.ac.uk Thank you for listening! Questions or comments? For further info: David Nelson, School of Health and Social Care, Bridge House, Room 3103 [email protected]

01522 837343 @davenelson88 @MH2aSC_UoL @macmillancancer www.lincoln.ac.uk

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