Professor Alison Richardson

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Professor Alison Richardson Professor of Cancer
and Palliative care Kings College
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Findings from a Multi Method Evaluation of the
Prostate Cancer Charity Specialist Nurse
Programme
Presented by Alison Richardson
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• Setting the scene

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Issues that influence the experience of care in
men with prostate cancer

• Dilemmas faced over treatment choices
• Varied and troublesome side effects of treatment
• Longevity of the disease
• Emotional and sexual health issues
• Treatment and care can be organised over a number
  of different settings

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Potential contribution of specialist nurses in
cancer care

• Support in the treatment decision making process
• Facilitating access to and providing help in
  order to make sense of disease and
  treatment-related information
• Addressing psychosocial needs
• Promoting co-ordination and continuity of care
• Providing interventions to help men better manage
  symptoms, side effects and consequences of cancer
  and its treatment

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The Prostate Cancer Charity Specialist Nurse
Programme

• The role of the prostate cancer specialist nurse
  was introduced to
• Improve the experience of men by appointing and
  placing nurses in treatment centres in the UK
  for 3 year pilot
• Provide emotional support, information and advice
• Address needs of men with, or at risk of,
  prostate cancer who are disadvantaged by virtue
  of age, isolation, disability and ethnicity and
  ensure systems developed that are accessible and
  inclusive
• Identify gaps in service provision and respond to
  these

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Aims and objectives of the evaluation

• The study had four principal objectives
• Determine symptom burden, experience of care and
  quality of life in patients living with prostate
  cancer
• Compare symptom burden, experience of care and
  quality of life in patients cared for by a team
  with a Prostate Cancer Nurse Specialist with
  those receiving usual care
• Assess impact of the Prostate Cancer Nurse
  Specialist programme on service provision from
  perspective of the multi-disciplinary team and
  key stakeholders
• To describe characteristics of, and the ways
  that, the nurses work

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Three element mixed-method study design

• Element 1
• A survey of the outcomes of care for patients
  with prostate cancer across 6 NHS Trusts. The
  survey questionnaire measured
• Supportive care needs
• Symptoms related to conditions of the prostate
• Quality of life
• Experience of, and satisfaction with care
  generally, and
• nurse specialist input in particular

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• Element 2 - a quasi-experiment
• compared outcomes of care between 2 sites that
  have a Prostate Cancer Nurse Specialist service
  with 2 matched sites that do not
• Element 3 - an in-depth case study of care
• 4 sites with Prostate Cancer Nurse Specialists
• Data collected from 3 groups
• the nurses themselves
• patients
• stakeholders

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Findings from the quasi-experiment element of the
evaluation

• 585 patients from 4 sites identified by clinical
  teams
• Patients cared for by team diagnosed over
  preceding 3-36 months
• 2 sites with a prostate cancer nurse specialist
  and 2 matched sites without one (but with a
  urological oncology nurse specialist)
• Invitation sent by clinical team and patient
  asked to reply if interested to research team who
  then sent questionnaire
• 510 completed questionnaires 87

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Comparison of outcomes of patients in terms of

• Supportive care needs
• Supportive Care Needs Survey
• physical and daily living needs, psychological
  needs, patient care and support needs, health
  system and information needs, sexuality needs,
  prostate specific symptoms
• Quality of Life
• EuroQol-5D
• Urological symptoms
• International Prostate Symptom Score (IPSS)
• Experiences of, and satisfaction with, care
• Designed by project team
• Organisation of care, information and advice,
  personal experience of care, satisfaction with
  care in general, satisfaction with specialist
  nurse

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The supportive care needs survey

• This questionnaire asks whether or not needs,
  which may have been faced as a result of being
  diagnosed with prostate cancer, have been met
• 5 possible answers to chose from

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of unmet need in hospital sites with without
a Prostate Cancer Charity Nurse Specialist
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Not all patients saw a specialist nurse

• If you have not seen a nurse specialist in the
  last 6 months please tick this box

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of patients who saw a specialist nurse across
all 4 sites
2 sites with PCNS
2 sites without PCNS
Yes 21
No 62
No 79
Yes 38
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of patients with unmet need in area of physical
issues by patient perception of having seen a
specialist nurse or not
ChiSq 7.09 p0.07
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of patients with unmet need in area of patient
care and support needs by patient perception of
having seen a specialist nurse or not
ChiSq 7.68 p 0.05
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satisfied with nurse compared by patient
perception of receiving care from a specialist
nurse or not
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In depth case study

• Element 3 - an in-depth case study of
• 4 sites with Prostate Cancer Nurse Specialists
• Data collected from 3 groups
• nurses themselves through interview,
  questionnaire and diary (4)
• patient interviews (40)
• stakeholder interviews (19)

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What nurses spent their time on
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time spent on direct patient care to patients
at different points in care pathway
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Comparison of of different elements of care
provided by nurse
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Patients perspectives on nurses contribution to,
and role in, their care
Navigator
Fixer
Anchor
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The Navigator

• I imagine the specialist nurse does a lot of
  work in the background. I mean she arranged
  after Id made my mind up, she went off and set
  up my radiotherapy. I was very happy for her to
  go and do it. If she hadnt been there Id of
  been chasing my way through the system to make an
  appointment
• I think just being there actually a kind of door
  or portal to the next phase. I felt quite
  comfortable with that. Ive mentioned the term
  conduit, and I think for me that describes the
  situation a footstep between me and the surgeon.
  They were like a bridge in actual factthey
  eased the path towards the solution that was
  chosen

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The Fixer

• the fact Id been incontinent and to try help
  and control, it exercises to do to help it on
  its way and that was basically really it. The
  specialist nurse was very helpful, tried to help
  me through, at that stage I wasnt getting on
  terribly well with the control thing.
• I went to the see the specialist nurse about
  impotence, she said try these tablets first and
  then we can take it further so she open her
  magic bag, you know with all the tings in, it
  seemed a funny thing for a nurse to be dealing
  with, but when you think about it, well yeah, why
  not?It is all part of the treatment isnt it.

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The Anchor

• The specialist nurse was the real person I leant
  on for information and guidance
• She reassured me that I was under an umbrella of
  care. I had permission to speak to her at any
  time, I knew I could that was the most
  important thing to me
• I know that Id got a shoulder to lean on before
  and after, knowing that the specialist nurse is
  there at the end of the phone is the most
  valuable. The specialist nurse puts it in
  perspective

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What value does the prostate cancer nurse
specialist add?
Task orientation
Substitution
Innovator
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Key observations from analysis to date

• On the face of it when making a simple comparison
  between sites with, and without, a PCNS the
  prostate specialist nurses made no particular
  difference to outcome
• Those patients who saw a specialist nurse of
  whatever sort had more unmet needs than those who
  did not see a nurse
• BUT those patients who had contact with a
  specialist nurse in site without a PCNS had more
  reported unmet needs than those who had contact
  with a specialist nurse in sites with a PCNS
• Those who had contact with a specialist nurse in
  sites with a PCNS were more satisfied with the
  care they received

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• Interviews with patients revealed aspects of the
  role perceived to be of value and that men used
  the nurses in different ways
• There was considerable role variation between
  nurses with issues over role definition and
  finding a niche
• There was some evidence nurses were experiencing
  role intensification which, if left unchecked,
  will prove unsustainable and possibly harmful

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Messages for the future

• What are some of the factors that might enhance
  the contribution of specialist nurses to the care
  of men with prostate cancer in the future?
• Preparation and training for advanced practice
• Clear understanding within the team of
  anticipated contribution
• Setting boundaries in terms of caseload,
  particularly referral criteria and discharge
  policy
• Supportive and effective management
• Aim for a discrete contribution in order to make
  that all important difference for patients

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Project Team

• Professor Alison Richardson¹, Chief investigator
• Dr Emma Ream¹, Co-investigator and project
  manager
• Dr Sara Faithfull² , Co-investigator
• Dr Vincent Khoo³, Co-investigator
• Professor Dame Jenifer Wilson Barnett¹,
  Co-investigator
• Lorraine Fincham¹, Research Associate
• Dr Veronica Tuffrey4, Statistician
• ¹Kings College London, Florence Nightingale
  School of Nursing Midwifery
• ²University of Surrey, European Institute of
  Health Medical Sciences
• ³The Royal Marsden Hospital NHS Trust
• 4 University of Westminster

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Acknowledgements

• The many men and healthcare professionals who
  took part
• The clinical teams at the sites where we
  collected data
• The Prostate Cancer Charity for giving us the
  opportunity to undertake this work
• The men who helped us refine the questionnaire
• The nurses who freely gave of their time to
  contribute to the evaluation and willingly took
  part