Cancer Survivorship: longer term issues and the role of primary care - Prof Eila Watson (Oxford Brookes University)


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A presentation given at the Irish Cancer Society's Survivorship Research Day at the Aviva Stadium, Dublin on Thursday, September 20th, 2013.

Cancer Survivorship: longer term issues and the role of primary care - Prof Eila Watson (Oxford Brookes University).

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Cancer Survivorship: longer term issues and the role of primary care - Prof Eila Watson (Oxford Brookes University)

  1. 1. Cancer Survivorship: longer term issues and the role of primary care Irish Cancer Society Survivorship Research Day Eila Watson Professor Supportive Cancer Care
  2. 2. Outline  Key issues for cancer survivors  Follow-up – what is the purpose and how well does it work?  Role of Primary Care – now and in the future….  NCRI Primary Care Clinical Studies Group – Survivorship sub-group
  3. 3. Prevalence • 2 million+ people in the UK living with a diagnosis of cancer now • 1.24 million cancer survivors had their diagnosis more than 5 years ago • 3.2% growth per year in the number of cancer survivors • 4 million cancer survivors by 2030 (Maddams et al, BJC, 2009)
  4. 4. Cancer survivors by time since diagnosis in the UK (Macmillan Cancer Support, Throwing light on the consequences of cancer and its treatment, 2013) 2010 2030 220,000 570,000 1,290,000 2,680,000 990,000 370,000 <1 year 1-5 years >=5 years
  5. 5. Survivorship Issues  Physical problems  Immediate  Long term effects of treatment- ongoing / persistent  Late effects of treatment  Psychological problems  Anxiety and depression  Fear of recurrence  Social problems  Relating to friends and family  Practical and financial issues  Return to work  Parenting
  6. 6. Health and Supportive Care Needs – long term  Postal Q survey to patients 5 -15 yrs post- diagnosis who remain disease-free, and their partners / close family members  Breast, colorectal and prostate cancer (Survivors N= 659, Partners N = 257)  Participants identified via cancer registry, invited by GP  Measured anxiety and depression, quality of life, unmet needs
  7. 7. Results: Anxiety and depression Patients % cases Family Member % cases UK norms % cases Anxiety HADS Possible case (8-10) 13.6% 14.4% 20.6% Probable case (11+) 9.3 % 9.3% 12.6% Depression HADS Possible case (8-10) 7.3% 3.9% 7.8% Probable case (11+) 2.1% 3.1% 3.6%
  8. 8. Results: Unmet needs 35 items – comprehensive cancer care, existential survivorship, information, quality of life, relationships At least one unmet need % (n) At least one moderate or strong unmet need % (n) Patients 47.4 (255) 36.6 (197) Partners/ Family Members 49.4 (127) 26.5 (68)
  9. 9. Results: Most common unmet needs Unmet need Patient % Partner % I need help to manage my concerns about my (my partners) cancer coming back 20.8 15.6 I need to know that my (my partner’s) doctors all talk to each other to coordinate their care 20.6 14.4 I need local health services that are available when I (my partner) needs them 18.8 9.3 I need to feel like I am managing my health (involved in my partner’s health) together with the medical team 18.0 11.7 I need any complaints regarding my (my partner’s) care to be properly addressed 14.7 8.9 I need information to be provided in a way I can understand 12.8 I need information about the chance of one of the members of my family developing cancer - 17.5
  10. 10. Predictors of health status, psychological morbidity, unmet need • Trait anxiety significantly associated with health status, anxiety, depression and unmet need • Hormone therapy, still attending hospital follow- up, and dissatisfaction with discharge were significantly associated with unmet need
  11. 11. Conclusions  Strategies required for identifying and addressing the needs of the minority, whilst allowing the majority to resume normal life  Need to find better ways to include partners / FM in cancer follow-up care (Harrison et al, JCO, 2009) (Turner et al, Psycho-oncology, 2010)
  12. 12. Consequences of pelvic radiotherapy treatment  Pelvic radiotherapy is a common treatment for gynaecological, prostate, rectal, anal and bladder cancers  Around 17,000 people are treated each year in the UK  Side-effects are common, but not well recognised or managed ….
  13. 13. Late Effects of Pelvic Radiotherapy “Dear Doctor…. I have been coming to your clinic for 6 years now. Last week I was seen by your registrar who informed me everything was fine. He said that it would be very unlikely for the cancer to return and there was no longer any need for me to come back for follow-up. I was sorry that I didn’t see you though. You were right about the cancer not coming back - that is a relief and I am grateful. But you know we never had a proper conversation about it all, about what it has really been like. Perhaps you would be surprised to know how my life is……. …. At first I would tell you I would be a bit loose or having to rush to the loo. I didn’t like to tell you I was having accidents – how embarrassing. You did ask me once if were managing intercourse. I know I said yes, but I couldn’t tell you how sore and uncomfortable it was . My husband gave up after a while…. I wanted to know if everyone was like me but I never had the courage to ask…… …..I don’t mean to grumble … I just wan’t specialists like yourself to realise it’s all the little things together that wear us down…..”.
  14. 14. SYMPTOM FEMALES (N = 223) MALES (N=195) Bowel urgency 58.7% (131) 45.1% (88) Difficulty controlling bowels 18.4% (41) 15.4% (30) Bowel incontinence 10.8% (24) 14.3% (28) Late effects in long term survivors of pelvic radiotherapy (1-11 years post-treatment)
  15. 15. SYMPTOM FEMALES (N = 223) MALES (N=195) Urine urgency 49.3% (110) 46.2% (90) Incontinence of urine 38.1% (85) 8.7% (17) Erectile dysfunction n/a 77.9% (152) Ability to have sexual relationship affected 23.8% (53) 53.3% (104) Late effects in long term survivors of pelvic radiotherapy (1-11 years post) Adams E, et al., Clinical Oncology (2013),
  16. 16. Implications • Increased efforts to monitor and document symptoms • Establish optimal way of eliciting symptoms and unmet needs from patients? • Appropriate assessment of patient with symptoms • Evidence-based management strategies / referral guidance • Education for secondary & primary care health professionals  A more coherent and co-ordinated approach to follow- up has potential to improve QoL
  17. 17. Current follow-up system  one size fits all approach  routine hospital follow-up (usually for 3-5 years)  focus on detection of recurrence BUT  outpatient clinics struggling to cope  is the system meeting patients needs?
  18. 18. New model of risk stratified care
  19. 19. Where does Primary Care fit in?  Main role: screening, diagnosis, end of life  Communication between secondary and primary care - limited  Uncertainty amongst patients regarding role of primary care in on-going cancer care  Scope and support (from secondary and primary care) for primary care to play a greater role in follow-up / survivorship care  Education, follow-up systems, access back to secondary care, resourcing
  20. 20. Role for primary care •Information and psychological needs •Assessment and management of long term and late effects •Screening – recurrence, second primary •Preventative care and chronic health issues
  21. 21. How can GPs best deliver cancer survivorship care? • Treatment summaries and personalised care plans • Currently GPs do not feel well-informed: less than 50% felt received adequate info on follow-up required, potential late effects, signs and symptoms of recurrence, when to refer back (Watson et al, J Cancer Surviv (2010) 4: 159-166) • Cancer Care Reviews • QOF points for conducting review within 6 months of diagnosis - BUT no clear guidance on how review should be conducted • Most done opportunistically • Most patients unaware had review
  22. 22. Cancer Care Reviews – patient views •Acknowledgement of diagnosis, and general support very important to patients. •Most patients and FMs would welcome the offer of a specific appointment to review their care •“ “ ….I think that would be a good idea… because it’s too easy just to say ‘are you ok’, and I’m one of these people that…says ‘yes, I’m fine’; whereas if you’re given an actual appointment …it’s a much better outlet…” “…I think if it’s an optional thing then you don’t have to go…but if it’s there I certainly would have gone,… know, it’s filling in those grey areas that I’ve got”
  23. 23. Recommendations 1. Practice contacts patient at time of diagnosis 2. Cancer care review appointment offered at end of active treatment - ?by practice nurse 3. Patient / FM sent list of potential issues they may wish to discuss prior to appointment 4. More guidance to primary care teams on content of review 5. Repeat review annually if patient / FM wishes. Adams et al, BJGP, 2011; 61:274-275.
  24. 24. Other models of care  Nurse-led follow-up in primary care  Nurse-led telephone follow-up (secondary care)  Nurse-led postal follow-up (secondary care)  Key worker  Others…
  25. 25. NCRI Primary Care Clinical Studies Group Screening; Early Diagnosis; Survivorship Multi-disciplinary group Aim: foster collaborations; generate trials Role of primary care in follow-up: What is the optimal role for primary care in the follow-up care of men with prostate cancer? - Guidelines review; interviews with patients; interviews with professionals; primary care notes audit
  26. 26. Prostate follow-up • Men with prostate cancer – physical, sexual, psychological needs • Current follow-up practices variable and often failing to meet these needs • Both secondary and primary care see a greater role for primary care in cancer follow-up Can a nurse-led psycho-educational intervention delivered in primary care will lead to greater improvements in prostate-related quality of life than
  27. 27. PROSPECTIV: pilot trial of a nurse-led psycho-educational intervention delivered in primary care to prostate cancer survivors Phase 1 – questionnaire (N=300) • How common are problems with urinary, bowel, sexual and hormonal functioning following treatment? •What follow-up care do men receive, what unmet needs do they have? Phase 2 – pilot trial (N=80) •Can nurse-led follow-up in primary care lead to greater improvements in prostate-related quality of life than usual care?
  28. 28. Nurse intervention Initial appointment in local GP surgery, tailored to address issue(s) of most importance to individual’s quality of life • Needs assessment • Identify any medications / treatments that may be helpful • Promote self-management by giving information, helping with goal setting and establishing coping strategies • Refer to GP, continence service, ED service etc as appropriate •Follow-up appointment(s) according to need, with telephone follow-up for all at six months
  29. 29. Preliminary findings Phase 1 Response rate: 56% On-going problems: 70% of respondents On-going problems AND interested in Phase 2: 51% of respondents Phase 2 •Intervention now being delivered •Well received thus far…..
  30. 30. In the words of the patients “The British approach to medical treatment isnot sufficiently holistic – we treat the symptomor the immediate disease and have littleconcern about the overall good health of thepatient” – 185 “Talking to other men in support groups has been a great help, especially when deciding which treatment to have" “I don’t consider I have cancer any more, although of course there’s a bit of anxiety when I get the next PSA test results – “How do we manage if needs are not met? 1) Purchase services 2) Rely on friends for emotional support, personal care and practical assistance 3) Suffer in resigned disappointment” - 331 “Great team in urology @ [hospital] – AAA+” “You ask about ‘after care’ – I get an injection every three months and see a junior doctor at [hospital] who can’t answer a simple question!” “Most helpful of all has been the ability to get in touch (usually very quickly) with the prostate nurse at [hospital]” – 493 “…. I constantly fear that I’m wasting time and they want me out of the consulting room as quickly as possible. […] Thank you for the chance to fill in this questionnaire […] feels good to know that somebody cares enough to try to improve things.” - 429
  31. 31. Future work for primary care survivorship group Cancer recurrence • Patient and health professional knowledge and awareness of important signs of recurrence • Assessment and management of fear or recurrence • Development of methods / symptoms for early diagnosis of recurrence
  32. 32. Conclusions • Increasing numbers of long term cancer survivors • Growing evidence of reduced health status, psychosocial concerns and unmet needs amongst some…….but not all • Impact on family • Need for targeted approaches
  33. 33. Conclusions (2) • Need to understand more about how common specific problems are at various time points and who is at risk of developing these problems • Need further work developing and testing interventions to support cancer survivors • Need to rigorously test new models of service delivery
  34. 34. Acknowledgements Oxford Brookes Oxford University Mary Boulton Peter Rose Eike Adams Nada Khan Daniel Turner Sian Harrison Emma Frith Clare Wilkinson; Richard Neal; David Weller; Christine Campbell Cancer Research UK; Macmillan Cancer Support; Prostate Cancer UK
  35. 35. Thank you for listening!
  36. 36. GPRD analysis • The General Practice Research Database (GPRD) is the world's largest database of anonymised medical records from primary care. • Records for > 3.6 million currently registered patients and >10 million patients in total • 450 practices covering approximately 4.6% of UK population • Records clinical events, prescriptions, referrals, tests • Case control study of breast, colorectal and prostate cancer survivors diagnosed more than 5 years ago (n=26,213)
  37. 37. Main findings • Cancer survivors consult more than age-matched controls • Cancer survivors have increased incidence of chronic illness • Breast cancer: Heart failure, Coronary artery disease, Hypothyroidism, Osteoporosis • Colorectal: Diabetes, Osteoporosis, Dementia • Prostate: Osteoporosis • Consulting for anxiety and depression similar, but breast and prostate cancer survivors more likely to be prescribed anti-depressants • Cancer screening and preventive care comparable between survivors and controls