Cancer  &  Pallia,ve  Care  Special  Interest  Group    

Workshop  organisers:  Anne0e  Berendsen,  Sco0  Murray,  Geoff  Mitchell,  

David  Weller,  Alan  Barnard  

WORLD  WONCA  PRAGUE  2013  

Cancer  &  Pallia,ve  Care  Special  Interest  Group  David  Weller  

University  of  Edinburgh  

WORLD  WONCA  PRAGUE  2013  

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  

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  

 

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)  

                                               

–  majority  of  over-­‐65s  have  2  or  more  condiNons  –  majority  of  over-­‐75s  have  3  or  more  condiNons      

Mul$-­‐morbidity  in  Scotland    

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

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  

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

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

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

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.  

‘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

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  

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  

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  

                                               

   

                                               

   

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”.  

                                               

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.  

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  

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  

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  

 

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  

QualitaNve  data  

•  Some  support  for  enhanced  roles  for  primary  care,  but  caveats  

•  Role  of  pracNce  nurses  •  Perceived  disaggregaNon  of  services  

     

   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)  

•  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)  

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

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