Overview:
WHO Collaborating Centre
Quality of life among people affected by myeloma
Patient and Family Myeloma Infoday
Saturday 23th November 2013
Christina Ramsenthaler MSc
1. Background
2. Aims of the research
3. Study to develop a new quality of life questionnaire for clinical practice
a) Interviews with patients
b) Large UK‐wide survey
4. Future plans
This work is supported by a Health Services Research Grant awarded by Myeloma UK
Chief Investigator............Professor Irene Higginson
Co‐Investigators..............Professor Steve Schey, Dr Richard Siegert and Dr Polly Edmonds
Researchers.....................Dr Thomas Osborne and Christina Ramsenthaler
Follow us on twitter @csi_kcl
What is quality of life and why is it important:
www.csi.kcl.ac.uk
Physical function
–
–
–
–
–
–
Well‐being; multiple aspects important to QoL
Myeloma patients report low physical, psychological and social functioning [1‐3] and have unmet supportive care needs [4] People with myeloma may suffer more different symptoms and problems than in other haematological cancers [5]
QOL assessment should become part of routine care [6]
Routine QOL assessment in clinical practice can help screen for unmet needs, facilitate communication and prioritize problems [7]
Existing QoL questionnaire are predominantly designed for use in research [8]
Follow us on twitter @csi_kcl
Emo‐
tional wellbeing
Social relation‐
ships
QoL
Spiritual wellbeing
Financial issues
Study Aims:

To develop and validate a questionnaire to assess the quality of life of people with multiple myeloma which is suitable for use in clinical practice.

To describe the quality of life of people with multiple myeloma.
Work / Usual activities
www.csi.kcl.ac.uk
Follow us on twitter @csi_kcl
Phase 1 Results: What issues matter to QOL?
Overview of the study:
Phase 0: Literature review Identify and evaluate existing QOL questionnaires
Phase 1: Qualitative interviews and focus groups
Identify issues important to QOL and build conceptual model
Activity & Participation:
Support: Health service factors
Support: Non‐health service factors
•Ambulation and mobility
•Family and family life
•Friendships and social life
•Independence
•Leisure and hobbies
•Self Care, usual activities
•Sex and Intimacy
•Work life
•Accessibility of healthcare
•Care & respect from professionals
•Communication and information
•Competency of professionals
•Consistency of healthcare
• Financial
• Housing
• Support from employer
• Support from friends and family
• Transport
Phase 2: Design questionnaire and carry out ‘pre‐testing’
Construct new questionnaire and test it using interviews
Phase 3: Questionnaire survey and validation
Multi‐centre questionnaire survey to measure QOL & validate new questionnaire
Follow us on twitter @csi_kcl
www.csi.kcl.ac.uk
www.csi.kcl.ac.uk
“what I miss at the moment, because [of] being neutropenic and my wife having colds, we can’t have cuddles and things. We’re sort of living together but, you know, not living together. I’m just waiting till I’m sort of not neutropenic so at least we can sit on the settee and give each other a cuddle”
Follow us on twitter @csi_kcl
“But I would like to know ... the steps of this, the progression of myeloma...I mean I’ve heard of people who live a long while, you know, but then I hear of people who have had relapses, and I want to know how they’ve relapsed ... and nobody tells me anything. They just keep saying “Look on the bright side”
“I think the most important thing for people is that, you know, that everybody’s got someone that they can talk to...I think the mental side of it is massive ... having someone to talk to and to, to share, you know, to share your burden with”
www.csi.kcl.ac.uk
Phase 1: Importance of emotional wellbeing
Phase 1: Do symptoms affect QOL?

Symptoms affect QoL if they have an impact on physical function and being able to do the things that people want to do:
Activity and Participation:
•Ambulation and mobility
•Family and family life
•Friendships and social life
•Independence
•Leisure and hobbies
•Self Care, ADLs, usual activities
•Sex and Intimacy
•Work life
“The quality of life...it’s just having the back problem... you can’t do nothing..., so obviously your quality of life’s gonna change due to you can’t do nothing, and it was literally ...couldn’t drive, couldn’t do anything with the kids, obviously cos I was in so much pain”
QOL
“I’ve found living with the pain in my hip and my back quite difficult because I’ve figured that wasn’t good quality of life because if I can’t bend down to do my shoes on or get in and out of bed easily that isn’t what I want... you know that isn’t good quality of life.”
Follow us on twitter @csi_kcl
www.csi.kcl.ac.uk
“I didn’t know what came over me. It’s like my whole life shattered. I thought God, this is the end. It’s like someone took a sledgehammer and hit me and the tears was coming down and my throat was, my, I can’t explain the feeling in my body”
“When I come out of here what’s going to happen? You know, how am I going to be, how long is it going to be before I’m the next one going under the ground? And when I come out, how much can I do to fix everything that I would like to fix... and there was no answer coming to me”
“I would have gone out with my grandchildren. Had a good old snow fight with them...but I wouldn’t do anything like that now. I wouldn’t take any chances... You know, you worry about sort of falling over or, infections too”
Follow us on twitter @csi_kcl
www.csi.kcl.ac.uk
Conceptual model of QOL in people with myeloma:
Adaptation
Coping
Expectations
Spirituality
Biological Status:
•Anaemia
•Bone lesions
•Clotting disorder
•Fractures
•Hypercalcaemia
•Infections
•Neutropenia
•Renal failure
•Spinal cord compression
How do all these issues
relate to one another?
Follow us on twitter @csi_kcl
• Hospital admissions
• Injections &blood tests
• Radiotherapy
• Stem cell transplant
• Bone marrow • Steroids • Surgery
aspiration • Chemotherapy • Tablets & other medication
• Clinic visits
• Transfusions
• Dialysis
• Hickman lines • X‐rays and scans
www.csi.kcl.ac.uk
What did participants tells us about existing questionnaires?
Activity & Participation
•Ambulation and mobility
•Family and family life
•Friendships and social life
•Independence
•Leisure and hobbies
•Self Care, ADLs, usual activities
•Sex and Intimacy
•Work life
Follow us on twitter @csi_kcl
QOL
www.csi.kcl.ac.uk
Summary: What have we learned about QOL tools for use in clinical practice?
• Questionnaire should cover issues most important to QOL:
– Emotional status, activity, participation, health services, other external factors
• Most important items (mobility, pain, care‐related)
• Length (shorter generally preferred)
• Questions about symptoms should ask their effect on function, rather than just their frequency or severity:
– “How often do you have pain?” VS “How much does your pain affect you?”
• Time frame (3 days not long enough, one week generally preferred)
Doctor’s and nurses’ views:
• Should include questions about the most clinically relevant issues:
– Anxiety, depression, pain, fatigue
• Screen / flag problems unable to uncover in clinical consultation
• Facilitate discussion of embarrassing issues such as sexual function
• Should include questions that are hard to ask in routine practice:
– Sexual function, fear of dying
• Comparison of QoL compared to when treatment started
• Focus the goals of care and tailor treatment
Follow us on twitter @csi_kcl
Treatment Factors:
Symptom Status:
•Appetite change
•Bleeding
•Breathlessness
•Cognitive impairment •Constipation
•Cough
•Diarrhoea
•Disturbed taste
•Dry mouth
•Fatigue or Drowsiness
•Hair loss
•Incontinence
•Insomnia
•Nausea and vomiting
•Neuropathy
•Pain
•Swollen limb
•Syncope
•Tremor
•Weight change
• Should be short and easy to read
– 2 sides A4 maximum
www.csi.kcl.ac.uk
Follow us on twitter @csi_kcl
www.csi.kcl.ac.uk
Developing & Testing the MyPOS
Phase 3: QOL Survey
‐ 13 sites across England
‐ National sample
• Used findings to develop MyPOS questionnaire
Bradford Teaching Hospitals NHS Foundation Trust
Northampton General Hospital NHS Trust
• Carried out ‘cognitive interviewing’ of the MyPOS:
–
–
–
–
The Pennine Acute Hospitals NHS Trust
Small sample of patients (n=12)
Allowed refinement of questions
Questions easy to understand?
Questions cover all issues important to QoL?
Colchester Hospital University NHS Foundation Trust
University Hospitals Coventry & Warwickshire NHS Trust
Guy’s & St Thomas’ NHS Foundation Trust
Wye Valley NHS trust
• Large cross‐sectional survey of 380 patients with myeloma
– To check whether the questions work as intended
King’s College Hospital NHS Foundation Trust
Western Area Health NHS Trust
Maidstone and Tunbridge Wells NHS Trust
Frimley Park Hospital NHS Foundation Trust
Epsom & St Helier University Hospitals NHS Trust
Follow us on twitter @csi_kcl
www.csi.kcl.ac.uk
The MyPOS ‐
The MyPOS ‐ Symptoms
Follow us on twitter @csi_kcl
Follow us on twitter @csi_kcl
www.csi.kcl.ac.uk
The MyPOS –
The MyPOS – Activity & Participation
www.csi.kcl.ac.uk
The MyPOS –
The MyPOS – Emotional wellbeing Follow us on twitter @csi_kcl
Surrey and Sussex Healthcare NHS Trust
Follow us on twitter @csi_kcl
www.csi.kcl.ac.uk
The MyPOS –
The MyPOS – Health care support, information
www.csi.kcl.ac.uk
Follow us on twitter @csi_kcl
www.csi.kcl.ac.uk
The MyPOS –
The MyPOS – Open questions
The MyPOS –
The MyPOS – Description of quality of life
Most prominent symptoms (n=380)
Follow us on twitter @csi_kcl
www.csi.kcl.ac.uk
Future plans:
•
•
•
•
We would like to thank all participants who have volunteered their time and shared their views on quality of life in the interviews or filled in the questionnaires.
We also thank the nurses and doctors for their support.
Thank you to Myeloma UK for funding the study.
– New study to understand how symptoms and quality of life develop over time – Longitudinal survey of people with myeloma and their family member
– Ask them to assess quality of life every two months using the MyPOS
– Develop this further into a set of questions which can help people with myeloma monitor their own quality of life + link with clinic system
This work is supported by a Health Services Research Grant awarded by Myeloma UK
www.csi.kcl.ac.uk
Literature
1.
Gulbrandsen N, et al. Health-related quality of life in multiple myeloma patients receiving high-dose
chemotherapy with autologous blood stem-cell support. Medical Oncology, 2001. 18(1): p. 65-77.
2.
Sherman AC. Psychosocial adjustment and quality of life among multiple myeloma patients
undergoing evaluation for autologous stem cell transplantation. Bone Marrow Transplantation,
2004. 33: p. 955-962.
3.
Uyl-de Groot CA, et al. Health related quality of life in patients with multiple myeloma undergoing a
double transplantation. European Journal of Haematology, 2005. 74(2): p. 136-43.
4.
Molassiotis A, et al., Unmet supportive care needs, psychological well-being and quality of life in
patients living with multiple myeloma and their partners. Psycho-Oncology, 2011. 20(1): p. 88-97.
5.
Johnsen AT et al. Health related quality of life in a nationally representative sample of
haematological patients. European Journal of Haematology, 2009. 83(2): p. 139-148.
6.
Sherman AC et al. Changes in quality-of-life and psychosocial adjustment among multiple myeloma
patients treated with high-dose melphalan and autologous stem cell transplantation. Biology of
Blood & Marrow Transplantation, 2009. 15(1): p. 12-20.
7.
Higginson I and Carr A. Using quality of life measures in the clinical setting. BMJ, 2001. 322(7297):
p. 1297-1300
8.
Osborne TR, Ramsenthaler C et al. What issues matter most to people with myeloma and how well
are we measuring them? A systematic review of quality of life tools. European Journal of
Haematology, 2012. 89(6): p. 437-57
Follow us on twitter @csi_kcl
www.csi.kcl.ac.uk
Thank you
Publication
Myeloma UK Website
Handbook/checklist for clinicians
The MyCare study: Follow us on twitter @csi_kcl
Follow us on twitter @csi_kcl
Relationship between performance status and Functioning measured by the MyPOS (n=380)
www.csi.kcl.ac.uk
Follow us on twitter @csi_kcl
www.csi.kcl.ac.uk