world!wonca!prague!2013!. weller.pdf · supac lung cancer follow-up study...
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Cancer & Pallia,ve Care Special Interest Group
Workshop organisers: Anne0e Berendsen, Sco0 Murray, Geoff Mitchell,
David Weller, Alan Barnard
WORLD WONCA PRAGUE 2013
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Cancer & Pallia,ve Care Special Interest Group David Weller
University of Edinburgh
WORLD WONCA PRAGUE 2013
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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
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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
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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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– majority of over-‐65s have 2 or more condiNons – majority of over-‐75s have 3 or more condiNons
Mul$-‐morbidity in Scotland
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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
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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
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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) 35.6 20.7 14.9* (11.3 to18.4)
Cost per patient (£s) 65 195 - 130 * (-149 to -112)
Time cost to the patient (min) 53 82 - 29 * (-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
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Journal of Clinical Oncology
Volume 24, Number 6, February 10, 2006: 848-855
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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Outcome Event
Family Physician (FP) Group
(n=483)
Cancer Centre (CC) Group
(n=485)
Risk Difference CC – FP
(95% CI)
Number of Patients (%)
Recurrence Distanta Locala Contralaterala
54 (11.2%) 36 10 11
64 (13.2%) 38 12 15
2.02% (-2.13, 6.16)
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 compressionb Pathological fractureb Uncontrolled local recurrenceb KPS ≤ 70b Brachial plexopathyb Hypercalcemiab
0 3 2 14 0 2
1 8 0 18 0 2
35 SCEs over 3,240 patient years
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J Clin Oncol. 2009 Jul 10;27(20):3338-‐45. 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.
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‘the majority of breast cancer patients prefer routine tests and periodic routine visits for 10 years or longer by specialists’
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: 1144–1150
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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
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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
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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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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$nence
“I felt it was something that I got on with (alone)”. He described how he “resorted to making home made nappies”. Rather than being offered, or asking for, support.
Describing psycho sexual problems
“Immediately postopera,vely the ques,on of impotence doesn’t really come in to your head… I think it’s only later on you have to… face-‐up to how you handle that… There’s not a lot of… counselling from either the primary care or the hospital in terms of the psychological aspect”.
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Follow-up of lung cancer patients: the role of primary care
Centre for Population Health Sciences University of Edinburgh
David Weller, Sco0 Murray, ChrisNne Campbell, Gill Highet, Chantelle Anandan, Richard Neal et al.
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SuPaC Lung Cancer Follow-Up Study
Should we seek an enhanced role for primary care?
• More paNents surviving ‘long-‐term’ • Evidence from other cancers: breast and colorectal • Co-‐ordinaNon/locus of control • Usage of primary care services by lung ca paNents • Management of co-‐morbidiNes • Nihilism and despondency: educaNonal implicaNons • Current focus on survivorship in cancer care • PaNent preferences for follow-‐up
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Methods • GP case-‐note audit (n = 183, from 60 prac$ces) • Primary care database analysis (n = 2336, n = 689)
• Health care provider interviews (n=84) • 4 x focus groups with pa$ents
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Some of our key findings ConsultaNon rates: • Cases (by Nme from diagnosis)
– months 1 to 3 17 – months 3 to 6 14.4 – Months 6 to 12 14 – Years 1 to 2 10
• Controls 7.1
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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
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QualitaNve data
• Some support for enhanced roles for primary care, but caveats
• Role of pracNce nurses • Perceived disaggregaNon of services
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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)
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• 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)
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SuPaC Lung Cancer Follow-Up Study
IntegraNng lung cancer follow-‐up
Specialist nurses Highly-skilled,specialised knowledge Familiarity with secondary care treatment environment Ready access to hospital- based 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
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Follow-‐up, survivorship and primary care; some key messages
• Evidence on follow-‐up – 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