WORLD WONCA PRAGUE 2013
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1 WORLD WONCA PRAGUE 2013 Cancer & Pallia,ve Care Special Interest Group Workshop organisers: Anne0e Berendsen, Sco0 Murray, Geoff Mitchell, David Weller, Alan Barnard
2 WORLD WONCA PRAGUE 2013 Cancer & Pallia,ve Care Special Interest Group David Weller University of Edinburgh
3 Why have a Cancer & PalliaNve Care SIG? growing worldwide interest in the role of primary care in cancer diagnosis and management primary care plays a vital role in early diagnosis of cancer yet this is a very significant challenge given the frequency of potennal cancer symptoms in primary care and the relanve rarity of a diagnosis primary care also has a key role in promonng uptake and informed choice in cancer screening programmes there is a growing recogninon that primary care has a vital role in cancer follow- up and survivorship primary care has long had a well recognised role in end of life care in cancer panents and also pallianve care for non cancer panents is of growing importance
4 First session: Anne0e and David 20 minutes PresentaNons: studies on follow- up and survivorship 10 minutes PaNent presentanon Mrs. McCartney 25 minutes Open forum (we will pose some quesnons): key issues for primary care and cancer survivorship
5 Cancer control: why consider primary care? Primary care is central to health care reform internanonally InternaNonal evidence linking more- developed primary care with be0er health outcomes (Starfield et al) Trend towards primary- care based management of chronic diseases (away from hospital- based services)
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7 Mul$- morbidity in Scotland majority of over- 65s have 2 or more condinons majority of over- 75s have 3 or more condinons
8 Follow up - why? detect cancer recurrence treatment side effects, new cancers other co-morbid health conditions incorporate on-going therapy (eg endocrine treatments) quality of life issues psychosocial issues empowerment/self management
9 UK RCT of PCP vs Specialist Follow- up Se6ng: two district general hospitals in England Par,cipants: 296 women with breast cancer on follow- up through specialist clinics 18 month study period Randomiza,on: Group 1 connnued specialist follow- up Group 2 follow- up from their own GP
10 Randomized Trial (18 months follow-up) Trial Group Difference (95%CI) GP n = 148 Specialist n = 141 Time to diagnosis of recurrence (days) 22 days 21 days 1.5 (-13 to 22) Total time with the patient (min) * (11.3 to18.4) Cost per patient ( s) * (-149 to -112) Time cost to the patient (min) * (-37 to -23) n No difference in health-related quality of life over time n No difference in anxiety or depression over time n GP patients more satisfied *p<0.001 Grunfeld et al BMJ 1996
11 Journal of Clinical Oncology Volume 24, Number 6, February 10, 2006: Randomized Trial of Long-Term Follow-Up for Early-Stage Breast Cancer: A Comparison of Family Physician Versus Specialist Care Eva Grunfeld, Mark N. Levine, Jim A. Julian, Doug Coyle, Barbara Szechtman, Doug Mirsky, Shalendara Verma, Susan Dent, Carol Sawka, Kathleen I. Pritchard, David Ginsberg, Marjorie Wood, and Tim Whelan
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13 Family Physician (FP) Group Cancer Centre (CC) Group Risk Difference CC FP Outcome Event (n=483) (n=485) (95% CI) Number of Patients (%) Recurrence Distant a 54 (11.2%) (13.2%) % (-2.13, 6.16) Local a Contralateral a Death (All Causes) 29 (6.0%) 30 (6.2%) 0.18% (-2.90, 3.26) Serious Clinical Events 17 (3.5%) 18 (3.7%) 0.19% (-2.26, 2.65) Spinal Cord compression b Pathological fracture b Uncontrolled local recurrence b KPS 70 b Brachial plexopathy b Hypercalcemia b
14 J Clin Oncol Jul 10;27(20): Epub 2009 Apr 20. Primary care physicians' views of rou$ne follow- up care of cancer survivors. Del Giudice ME, Grunfeld E, Harvey BJ, PilioNs E, Verma S.
15 De Bock GH, Bonnema J, Zwaan RE, et al. Patient s needs and preference in routine follow-up after treatment for breast cancer. Br J Cancer 2004; 90: the majority of breast cancer patients prefer routine tests and periodic routine visits for 10 years or longer by specialists
16
17 Involvement of primary care in cancer follow- up: potennal benefits evidence that strong primary care can lead to be0er health outcomes in chronic disease management cancer panents have mulnple health needs, and require holisnc, co- ordinated care many primary care pracnnoners want to have a greater role many panents want their family doctor to be involved potennally: promotes be0er- integrated care more cost- effecnve
18 Involvement of primary care in cancer follow- up: caveats many cancer panents prefer to stay closely linked to hospitals/specialist services many problems experienced by cancer panents require specialised skills primary care pracnnoners ojen reluctant to take on these kinds of responsibilines may not have sufficient access to services needed quality of primary care varies widely
19 Survivorship the period following first diagnosis and treatment and prior to the development of a recurrence of cancer or death From Cancer Pa,ent to Cancer Survivor, Ins,tute of Medicine, USA, 2006
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21 Experiences of follow- up a?er treatment in pa$ents with Prostate Cancer: A qualita$ve study Follow- up system failure I went to my doctor. I said nothing was done about my six- month check. I suppose I m alright? I feel alright.. He was later re- referred)... Nothing was said about having forgoten about me the last four years I m not picking on anybody but I m just saying that I was forgoten Follow- up system failure I missed out having a blood test and that went up slightly (the next test) I don t think anybody dropped me a note and said Now is the,me to I felt I could handle it quite sa,sfactorily so I was quite happy. So if one was finding fault, that s where there had been a drop off one might say. When I go now, the nurse will say I ll see you again on a par,cular date and I make a note of it and do it Describing Incon$nence I felt it was something that I got on with (alone). He described how he resorted to making home made nappies. Rather than being offered, or asking for, support. Describing psycho sexual problems Immediately postopera,vely the ques,on of impotence doesn t really come in to your head I think it s only later on you have to face- up to how you handle that There s not a lot of counselling from either the primary care or the hospital in terms of the psychological aspect.
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23 Follow-up of lung cancer patients: the role of primary care David Weller, Sco0 Murray, ChrisNne Campbell, Gill Highet, Chantelle Anandan, Richard Neal et al. Centre for Population Health Sciences University of Edinburgh
24 Should we seek an enhanced role for primary care? More panents surviving long- term Evidence from other cancers: breast and colorectal Co- ordinanon/locus of control Usage of primary care services by lung ca panents Management of co- morbidines Nihilism and despondency: educanonal implicanons Current focus on survivorship in cancer care PaNent preferences for follow- up SuPaC Lung Cancer Follow-Up Study
25 Methods GP case- note audit (n = 183, from 60 prac$ces) Primary care database analysis (n = 2336, n = 689) Health care provider interviews (n=84) 4 x focus groups with pa$ents
26 Some of our key findings ConsultaNon rates: Cases (by Nme from diagnosis) months 1 to 3 17 months 3 to Months 6 to Years 1 to 2 10 Controls 7.1
27 Profile of consultanons ~80% of consultanons related to lung cancer 20% led to invesnganon 7% led to a referral prescribing: majority of prescripnons for annbioncs, analgesia, anndepressants li0le direct evidence of structured cancer care or psychosocial management
28 QualitaNve data Some support for enhanced roles for primary care, but caveats Role of pracnce nurses Perceived disaggreganon of services
29 The role of primary care is most variable and poorly defined in relanon to panents who have received oncology treatment and can expect to have a period of relanve stability. From a GPs perspecnve, such panents run the risk of being cast adrij : I remember seeing one man with lung cancer who was actually in a period of being very well, he wasn t going to the hospital anymore because he d had his pallia,ve radiotherapy, he wasn t ill enough to be going to the hospice and so he was in a sort of limbo I would hope that in that period of,me pa,ents would have some contact with us. I think he ended up ge6ng infec,ons and seeing a different doctor each,me (GP, Area 1)
30 From a specialist nurse perspecnve, meenng the needs of panents who ve completed treatment and been discharged back to the community can be problemanc. Such panents may miss out because they don t meet the strict criteria necessary to receive support in the community: The problems we ve had lately is the pa,ents, we ve got these in- between pa,ents, who aren t quite ill enough, they re on the decline, their breathing is bothering them or they get a bit of this and a bit of that but they re not ill enough to get home care, they re not ill enough to get a regular visit off the district nurses (LCNS, Area 4)
31 IntegraNng lung cancer follow- up Specialist nurses Highly-skilled,specialised knowledge Familiarity with secondary care treatment environment Ready access to hospitalbased services Engagement with MDTs Primary care Continuity of care Frequency of contact Management of co-morbidities Established role in co-ordinating care Issues of convenience, access, availability, familiarity Hospital-based services SuPaC Lung Cancer Follow-Up Study
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33 Follow- up, survivorship and primary care; Evidence on follow- up some key messages primary vs secondary: equivalence on key outcome measures views of key stakeholders vary Survivorship typically consulnng in primary care increases ajer a cancer diagnosis acnvity doesn t imply structured approaches role of primary care evolving now greater inclusion in guidelines, survivorship care plans etc
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