Social Difficulties & Appearance Concerns in Lymphoedema Secondary to Cancer Study

1. Service User Research into Social Difficulties and Appearance Concerns in Lymphoedema Secondary to Cancer A Macmillan Cancer Support funded Study Mental Health Nurse Academics UK Bradford 18th Oct 2011 Dr Sally Barlow S.barlow1@bradford.ac.uk

2. Background – What is Lymphoedema? • Lymphoedema is the persistent swelling of a limb or midline body region resulting from the accumulation of lymph fluid. • Increased limb size can interfere with mobility and affect body image (Moffatt et al., 2006). Picture courtesy of Lymphoedemapeople.com simmsmanncenter.ucla.edu

3. Lymphoedema Secondary to Cancer/Cancer Treatment Secondary lymphoedema (SL) is a common complication following cancer or its treatment • Breast Cancer – Upper Limb Lymphoedema • 20% developing arm swelling • Manual Lympatic Drainage, Compression bandaging • Compression Sleeve and hand gauntlet • May also lead to Truncal Lymphoedema • Low incidence • Lack of effective treatment options • Wear Compression Vest

4. Lymphoedema Secondary to Cancer/Cancer Treatment • Gynaecological surgery - Lower Limb Lymphoedema • 28 and 47% • Manual Lymphatic Drainage, Compression bandaging • Compression Stockings/Tights • Psychological Assessment • There is a lack of psychological assessment to determine the change in lifestyle occurring from a SL diagnosis: • Maintenance of a lifelong condition. • Change in appearance. • Garment appearance. • Physical limitations. • Psychosocial factors may impact on concordance of treatment

5. Aims and Objectives of the Study • To identify the nature of social difficulty, avoidance and reaction to visible difference in people with SL as a result of cancer, and its treatments. • To explore the extent to which questionnaires validated in other contexts capture social anxiety, avoidance and isolation, and reaction to visible difference in people with SL. • To identify the validated measures most acceptable to people with SL. • To survey a large group of people with SL. • Validation of a new psychometric scale – Lymphoedema-specific questionnaire developed by our research team.

6. Design of the Study Purposive Sample – Advert placed in the national service user newsletter produced by the Lymphoedema support network (LSN) lymph line ‘ Have you experienced difficulty socializing since you developed lymphoedema?’ NO YES/NO YES • Individual Qualitative Interviews • Semi-structured • n = 14 • Focus Groups • - Semi-structured • London and Leeds • n= 15 • Postal Survey • - Standardised scales below and LQ • n= 104 • Derriford Appearance Scale (DAS24) • Work and Social Adjustment Scale (WSAS) • Brief Fear of Negative Evaluation Scale (BFNE) • Hospital Anxiety and Depression Scale (HADS) • Scale Validation Study • Lymphoedema Questionnaire (LQ) Ethics approval was obtained from the University of Bradford Research Ethics Committee

7. Thematic Analysis Responses from participants with social difficulties – Individual interviews Impact of Lymphoedema. “it rules your life it does…it does rule your life… it affects every part of your life...I could be constantly worrying about it every morning when I got up and stay indoors and hide or wrap myself in cotton wool or I tend to forget, I just get on with my life until the crisis hits me (referring to cellulitis) and then it all hits me all at once which is horrific… yeah it affects every corner of your life...”(SJ) Psychological Implications and Self-Perceptions “..I find my personal arm so ugly, it offends me is what it is...and I can’t come to terms with it...I don’t want to look at myself in the mirror with it and that sort of thing’” (RP) ‘…but the first year was, I was depressed, I was crying...... it it...was awful … I think the depression and just constantly looking at my leg and wondering what was going to be the next stage and would it get bigger and bigger.’ (JE)

8. Thematic Analysis Cont… Other People’s Perceptions “then you get the ignorant people that…give the odd snidey remarks…like “oh god look at the size of her arm”.. (SJ) ‘That’s the big thing when people ask what you have done to your hand. And I don’t want to tell them that I’ve had breast cancer. I choose who I tell. (AW) Clothing Restrictions. ‘…clothes shopping is, used to be one of my favourite past times it’s not anymore… it can be it’s not the embarrassment it’s more of a…frustration, you just can’t find anything to fit.’ (SM) (Having the compression sleeve on show) ‘I have tried but I’ve just felt soooo self-conscious, I’ve even had to go to the toilet and take it off because I just couldn’t… I’m not saying everyone else was looking at it but I felt they were.’ (AW)

9. Physical Limitations. ‘…working with it and that, that was quite difficult...and I did end up having to give up work...I think that’s made the biggest difference to me’ (BL) ‘oh I used to avoid if we went out at night, we once went out to a club with friends and because everyone stands at the bar drinking I can’t stand and there again if you go to a pub and everyone’s standing and talking and I say can we get a seat you know often that’s not the sociable thing to do...People do often congregate and stand at the bar talking.’ (GB) Management of Treatment ‘to be honest before I’d had me surgery and before I’d got involved with lymphoedema I didn’t really know what it was so I didn’t know how it would affect me, so when I filled the form in consenting for my operation and they just go through the different things, lymphoedema, nobody actually explains to you what lymphedema is…it’s just lymphoedema…and sign here’. (GF) It’s like most people with lymphoedema become experts because you go on the internet, because GPs know nothing... Even now, so you make sure that you’re an expert… ‘(GB)

10. Responses from Participants without Social Difficulties • Reflective of those from participants with social difficulties – less emotionally charged accounts, often referring to emotional responses in the past tense. • Specific reference and agreement was made to the requirement for assertive temperaments in order to gain the treatment required “I think positive I do... I mean I’ve had the worry about cancer for 30 years, but I’m still here... and the longer I go... I was just glad to be 50...now I’m 72 going on 73, there’s always positive...‟ I think about getting control about it has helped me because some time ago I didn’t know as much as I do now... and when it was out of control I found it difficult to cope with…because you do if something’s happening out of your control whether it’s the initial cancer or whatever...the more you get to know the more you’re in control...

11. Acceptability of Standardised Questionnaires With Social Difficulties • Generally positive • DAS24 to be most preferable and the BFNE least preferred. • Generally acceptable • Concerns about their relevance Without Social Difficulties Measures are not acceptable to the whole lymphoedema population Lack confidence in the face validity of the instruments if the population for whom it is intended do not see it as acceptable and relevant Unlikely that the instrument will be useful in clinical practice

12. Design of Lymphoedema Specific Questionnaire (LQ) 24 item scale designed to assess psychosocial difficulties in people with lymphoedema. Responses: strongly agree to strongly disagree. N/A response is included where appropriate Score 0-5 (A score of 5 indicates more distress) – Higher total score = More Distress • I am concerned that other people may notice my lymphoedema • I hide/cover up my lymphoedema: • a) when attending social events/special occasions • b) when working/volunteering/attending college • c) in my free time (e.g. completing errands, taking walks) • d) when a photo is being taken • Demographic Information • Duration, type, location, time of onset after cancer diagnosis, rating of social difficulties before and after lymphoedema diagnosis • 2 items concerning cancer treatment and lymphoedema are included but not scored

13. Quantitative Analysis Distress scores p=0.013 DAS24 p=0.100 HADS Anxiety p=0.020 HADS Depression p=0.004 Lymphoedema Questionnaire

14. Validation of the Lymphoedema Questionnaire • was accessible, acceptable and relevant to participants and this showed good face and content validity • The LQ was developed as a measure of concerns with appearance and social interactions. The best single measure which examines these two concerns in other contexts is the Derriford Appearance Scale 24 (DAS). • -High correlation between these two scales – Convergent validity • Factor analysis suggests the existence of 4 meaningful separate subscales (self/other perceptions, camouflage tactics, self-perception of appearance, perceptions of others). The measure also appears to be more acceptable to participants than the validated measures.

15. Recommendations • Screening for Psychosocial Difficulties • Implement the DAS24 and Lymphoedema-specific questionnaire as screening tools to identify people with social interaction and appearance concerns. • Information available to Cancer Patients • Raise awareness of risk of lymphoedema following cancer amongst patients and routinely inform patients pre-operatively of the related risk. • Improvements in Healthcare Provisions • Provide training about lymphoedema for generalist health professionals. • Improve communication about lymphoedema by health care professionals. Co-ordinate care between oncology, physical therapy and lymphoedema services. • Health professionals should provide information about support groups to patients. • Practical Aspects • Make improvements in the provision of compression garments – ensure garments are accurately fitted, provided more quickly and multiple garments are made available. • Improve appearance of compression garments. • Treatment for those identified with social difficulties • Develop a stepped care model approach to psychosocial interventions for the management of secondary lymphoedema, with higher levels of support available to patients experiencing greatest psychosocial difficulties.

16. Acknowledgements This project was generously funded by Macmillan Cancer Support • Professor Rob Newell – Professor of Nursing Research • Dr Jacquelyne Todd - Physiotherapist Consultant in Lymphoedema • Dr Vanessa Taylor – Senior Research Fellow/Senior Lecturer • Professor Rachael Dixey – Professor of Health Promotion and Service User • Ms Sarah Carney – Service User • Mrs Ros Lam - Service User and Committee member of Lymphoedema Support Network (LSN) • Julie Cottam – Wharfedale Lymphoedema Clinic • Macmillan Cancer Support Advisors – Katie Booth, Steve Edwards and Albhe Bowe. • Dr Tracy McClelland – Training qualitative techniques. People who responded to our advertisements and participated in the study, giving their time and insights with such care and detail.