Brain tumour patient forum Danette Langbecker keynote speech

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Meeting the Unmet Needs of People Affected by Brain Tumours. By Dr Danette Langbecker, Research Fellow,
Institute of Health & Biomedical Innovation, Queensland University of Technology.

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Brain tumour patient forum Danette Langbecker keynote speech

  1. 1. CRICOS No. 00213J! Meeting the unmet needs of Brain Tumour Patients Dr. Danette Langbecker, Keynote Hosted by Cure Brain Cancer Foundation
  2. 2. ihbii n s t i t u t e o f h e a l t h a n d b i o m e d i c a l i n n o v a t i o n ̋ CRICOS No. 00213J! Meeting the Unmet Needs of People Affected by Brain Tumours! Dr Danette Langbecker! Research Fellow! Institute of Health & Biomedical Innovation! Queensland University of Technology!
  3. 3. CRICOS No. 00213J!CRICOS No. 00213J! Patient and family needs! •  Identify specific issues that people need help (resources, action) with! •  Different from quality of life or satisfaction with care! •  Depend on the services available!
  4. 4. CRICOS No. 00213J!CRICOS No. 00213J! What do we know about the unmet needs of people affected by brain tumours?! •  Focus groups & interviews with 18 patients & 18 family members –  people with any type of brain tumour, any time since diagnosis! –  aimed to identify needs, any support services which would have been helpful, experiences of discrimination! (Janda et al. 2006)
  5. 5. CRICOS No. 00213J!CRICOS No. 00213J! Areas of support! 1.  Unable to name exactly what kind of support! 2.  Information and coping with uncertainty! –  urgent treatment initiation! –  designated staff person! –  preparation for imminent changes through treatment! –  technology to obtain info & support! 3.  Practical support! –  reliance on family & friends! –  support with financial issues & dealing with government agencies!
  6. 6. CRICOS No. 00213J!CRICOS No. 00213J! ! 4.  Return to pre-treatment responsibilities or prepare for long-term care! 5.  Deal with social isolation & organise respite care! 6.  Overcome stigma/discrimination! 7.  Discuss potentially reduced life expectancy! Need support?
  7. 7. CRICOS No. 00213J!CRICOS No. 00213J! How important are these needs and what help is wanted?! •  Survey study (Qld): 75 patients & 70 family members subscribed to Queensland Cancer Fund Brain Tumour Support Service –  people with any type of brain tumour, any time since diagnosis! –  aimed to identify what were the most significant needs, and which services were most preferred to address needs! (Janda et al. 2008)
  8. 8. CRICOS No. 00213J!CRICOS No. 00213J! Highest unmet needs among patients! Rank % reporting moderate to high unmet needs for help 1 Lack of energy/ tiredness 44% 2 Uncertainty about the future 43% 3 Not being able to do the things you used to do 40% 4 Changes in mental or thinking ability 40% 5 Physical side effects of the tumour & treatment 39%
  9. 9. CRICOS No. 00213J!CRICOS No. 00213J! Highest unmet needs among family members! Rank % reporting moderate to high unmet needs for help 1 Addressing fears about the patient’s physical or mental deterioration 40% 2 The impact that caring has on your working life/ usual activities 39% 3 Reducing stress in the life of the person with a brain tumour 39% 4 Adjusting to changes in the mental/thinking ability of the patient 37% 5 Making decisions about your life with uncertainty 36%
  10. 10. CRICOS No. 00213J!CRICOS No. 00213J! Focus on information needs! Continuity of care Consent, participation in decision-making Psychological adjustment & distress Lazarus & Folkman 1984; Carney et al. 2006; Haggerty et al. 2003; Morris &Thomas 2002 How to provide care Family members
  11. 11. CRICOS No. 00213J!CRICOS No. 00213J! Review: Info Needs At Diagnosis ! •  Stress → difficult to assimilate info ! •  Treatment initiated soon after diagnosis! •  Early discharge & out-patient care! •  Proactive provision of info! –  symptoms, complications, neurocognitive changes! •  Avoid ‘too much’, ‘too soon’, & maintain hope! Schmer et al. 2008; Lobb et al. 2011; Keir et al. 2007; Schubart et al. 2008; Janda et al. 2006
  12. 12. CRICOS No. 00213J!CRICOS No. 00213J! How Well Is Info Provided?! •  Insufficient information! –  non-acute issues! –  feel unprepared for the future! •  Information not well understood! –  diagnosis or prognosis! –  ‘glioma’, ‘successful’ surgery! •  30-60% unmet information needs! –  lack of info about illness & treatment! –  need info about symptoms! Davies 1997; Wasner et al. 2007; Diaz et al. 2009; Salander et al. 1996; Halkett et al. 2010; Mackenzie et al. 2010; Arber et al. 2010; Rozmovits et al. 2010; Widenheim et al. 2002; Edvardsson et al. 2008; Durity et al. 2000; Sherwood et al. 2004; Spezeski 2009; Lidstone et al. 2003; Janda et al.
  13. 13. CRICOS No. 00213J!CRICOS No. 00213J! Question Prompt List (QPL)! •  Structured list of questions! •  Assists patients to express their info needs! •  Gives ‘permission’ to ask! •  Evaluated via analysis of audio-taped recordings of consultations! –  increases question asking! •  Not previously developed for people affected by brain tumours! Bruera et al. 2003; Dimoska et al. 2008; Butow et al. 2004
  14. 14. CRICOS No. 00213J!CRICOS No. 00213J! Development of a QPL! •  Thematic analysis of existing resources! •  Feedback from patients, families, health professionals! •  Readability analyses! •  Redrafting!
  15. 15. Main topics! Support Diagnosis Prognosis Symptoms   &  changes Treatment  &   management A7er   treatment   finishes The  health   professional   team •  Tumour  type   •  Loca=on   •  Extent   •  Cause   •  Tests   •  Telling  people  about  the   diagnosis   •  Coping  with  the  diagnosis   •  Cure  or  control   •  Quality  of  life   •  Malignancy  &  spread   •  Natural  history   •  Predic=ng  prognosis   •  Iden=fying  &   understanding   problems   •  Cogni=ve,  behavioural   &  personality  changes   •  Emo=onal  &  mood   changes   •  Seizures   •  Changes  to   appearance   •  Lifestyle  changes   •  Services  &   organisa=ons   •  Informa=on   •  Emo=onal  support   •  Prac=cal  issues   •  Financial  issues   •  Spiritual  &  cultural   •  Peer  support   •  Family  &  friends   •  People  providing  care   •  Mul=disciplinary  team   approach   •  Visits  &  appointments   •  Contac=ng  your  team   •  Help  communica=ng   •  Overall  treatment  plan   •  Understanding  &  choosing   treatments   •  Prac=cal/  procedural   •  Clinical  trials   •  CAMs   •  Self  management   •  Pallia=ve  care   •  Oral  medica=ons   •  Chemotherapy   •  Radiotherapy   •  Surgery   •  Plan  for  the  future   •  Recovery  &   rehabilita=on   •  Recurrence   •  Work   •  Driving   •  End  of  life  issues  
  16. 16. CRICOS No. 00213J!CRICOS No. 00213J! Resulting QPL!
  17. 17. CRICOS No. 00213J!CRICOS No. 00213J! Piloting of the QPL! •  Tested QPL compared to standard information booklet! –  is it helpful? ! –  does it help patients to ask questions?! •  20 patients undergoing treatment!
  18. 18. CRICOS No. 00213J!CRICOS No. 00213J! Acceptability of the QPL!
  19. 19. CRICOS No. 00213J!CRICOS No. 00213J! Use of the QPL!
  20. 20. CRICOS No. 00213J!CRICOS No. 00213J! Comments! •  “The brochure was great to help get an overview and prepare for what was ahead. I had difficulty with talking with doctors beforehand.” ! •  “I gave the brochure to my sons to read, even my 15 year old had no problems, it was easy to understand.” ! •  “The brochure didn't answer enough of what I needed to know, but I liked to be able to take it and ask doctors.” !
  21. 21. CRICOS No. 00213J!CRICOS No. 00213J! Overall! •  QPL acceptable to patients! –  helpful, useful questions, ‘right’ length! –  QPL prompted question-asking! –  may still be overwhelming! •  QPL available for patients & families in hard copy & online!
  22. 22. CRICOS No. 00213J!CRICOS No. 00213J! Current & future work! •  Unmet needs depend on what services are available & used! –  what services do people actually use? ! –  why or why not?! !
  23. 23. CRICOS No. 00213J!CRICOS No. 00213J! ! •  How can we better support family members of people diagnosed with brain tumours? ! –  how to reach people outside of metropolitan areas?! –  what support is wanted & needed?!
  24. 24. CRICOS No. 00213J!CRICOS No. 00213J! Thank you! ! Dr Danette Langbecker! d.langbecker@qut.edu.au! Ph: 07 3138 6123!
  25. 25. CRICOS No. 00213J!

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