Brain tumour patient forum Danette Langbecker keynote speech

CRICOS No. 00213J!

Meeting the unmet needs of Brain Tumour Patients Dr. Danette Langbecker, Keynote

Hosted by Cure Brain Cancer Foundation

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i 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!

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!


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)


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!


!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?


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)


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%


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%


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


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


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. 2006; Parvateneni et al. 2011


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


Development of a QPL!•  Thematic analysis of existing resources!•  Feedback from patients, families, health

professionals!•  Readability analyses!•  Redrafting!

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


Resulting QPL!


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!


Acceptability of the QPL!


Use of the QPL!


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.” !


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!


Current & future work!•  Unmet needs depend on what services are

available & used!–  what services do people actually use? !–  why or why not?!!


!•  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?!


Thank you!!

Dr Danette [email protected]!

Ph: 07 3138 6123!

CRICOS No. 00213J!

Brain tumour patient forum Danette Langbecker keynote speech

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Transcript of Brain tumour patient forum Danette Langbecker keynote speech