HOPE Protocol [PDF, 420KB] - National Cancer Survivorship Initiative

National Cancer Survivorship Initiative
Supported Self Management Workstream
Outline Plan and Proposal for the Delivery and Evaluation
of the HOPE Self-Management Programme for Breast
Cancer Patients as part of the Birmingham East and North
PCT Improvement Project.
Nicola Davies
Lynn Batehup
20/08/09
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Self-Management Programme for Survivors of Breast Cancer
Birmingham Service Improvement Project Protocol
National Cancer Survivorship Initiative, Macmillan Cancer Support
1. Background
1.1. Introduction
In the UK, there are an estimated two million cancer survivors, and this is expected to rise
annually by more than 3% (KCL, 2008). There are currently limited support services
available for people who have completed their primary treatment for cancer, and are living
with and beyond cancer. This includes not only patients in remission, but also patients who
may now live for many years with metastatic disease undergoing repeat cycles of treatment.
The Cancer Reform Strategy (Allberry, 2008) highlights the need to commission services to
support patients who may be dealing with the long-term consequences of cancer and the
enduring effects of cancer treatments.
The Self-Management Workstream of the National Cancer Survivorship Initiative (NCSI) has
agreed the development of national cancer survivorship follow-up models for pilot testing of
self-management support for survivors who will be at different stages of living with or beyond
a diagnosis of cancer. This will be achieved as part of an NHS Improvement test community
for new survivorship services within Birmingham East and North PCT, Good Hope Hospital,
and Pan Birmingham Cancer Network. The programme will be offered to patients who have
completed their treatment for primary breast cancer, as part of testing the redesign of the
pathway for cancer follow-up and support.
Self-management programmes are offering greater utility in the current climate of increased
numbers of people living with chronic long-term conditions. Indeed, chronic disease selfmanagement
has been shown in the US, Canada, and the UK to be effective on both a
patient and health service level (Lorig et al., 1999; Holroyd et al., 1986; Lorig, Mazonson,
and Holman, 1993; Watson et al., 1997).
1.2. Self-Management Programmes
The leading self-management programme is the USA-developed Chronic Disease Self-
Management Program (CDSMP), a community-based generic programme applicable to all
chronic conditions (Lorig et al., 1999). The CDSMP is designed around self-efficacy theory
(Sieving et al., 1997; O‘Leary, 1985), with confidence in one‘s abilities to perform specific
behaviours being one of the key factors in successful health behaviour change (O‘Leary,
1985). In a five-year research project, the CDSMP was found to improve healthy behaviours
(i.e. exercise, cognitive symptom management, coping, and communications with
physicians) and health status (i.e. self-reported health, fatigue, disability, social/role
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activities, and health distress), as well as decrease days in the hospital (The British Liver
Trust, 1999).
This gave rise to the concept of the expert patient and the introduction in the UK of the
Expert Patient Programme (EPP) (an anglicised version of the CDSMP) in 2001 (DH, 2001).
Like the CDSMP, the EPP is a lay-led self-management programme for all long-term
conditions. The programme was motivated by the ‘Your Health, Your Care, Your Say’
consultation showing that people with long-term conditions, for which cancer has now
become, desire more control of their health via self-management (DH, 2006a). Evaluations
of the EPP have provided support for the programme’s utility, but little engagement from
health professionals has been highlighted as a potential limitation for cancer survivors
(Wilson, 2008), and the respective benefits of lay versus professional trainers is yet
unproven (Chodosh and Morton et al., 2005)
Similarly, Macmillan provide the ‘New Perspectives course, a cancer version of the CDSMP
(previously the ‘Living with Cancer’ course), a free six-week course for people living with and
beyond cancer, which is facilitated by trained tutors who have also experienced cancer.
Attendees meet each week for two and a half hours to learn new skills and techniques.
Feedback from participants has been encouraging, and particularly favourable in terms of
the positive thinking and goal-setting components of the course. A limitation of the course is
the inflexibility of the programme, since tutors are required to follow guidelines rigidly.
Interest is being shown in establishing whether a ‘co-creating health model’ might offer better
outcomes. The Health Foundation uses the term ‘co-creating health’ to describe an active
and collaborative partnership between patients and health professionals (Coulter and Ellins,
2006). For guided self-management to be successful, a positive patient/physician
relationship has been shown to be a key factor (Coulter, 1997; Clark and Gong, 2000;
Holman and Lorig, 2000). In terms of patient preference, nurse-delivery is most often
favoured (Pennery and Mallet, 2000).
Taking into consideration the limitations of previous self-management programmes, the
Helping Overcome Problems Effectively (HOPE) SMP, has been selected for this pilot study.
Designed by Dr Andy Turner and Dave McHattie of Coventry University, HOPE is set within
the theoretical framework of positive health psychology. It draws on evidence-based
techniques to help enhance participants’ well-being and motivation and has been shown to
improve positive affect (Barlow et al. 2000). Interestingly, 83% of participants attending
Macmillan’s LWC Programme rated the positive thinking activity as beneficial, indicating the
potential utility of a programme such as HOPE for cancer survivors. The programme also
offers flexibility in that participants contribute to the final content of the course. The aim is to
eventually integrate such a programme into service delivery.
In order for this to be achieved, a mixed methodology approach will be required for the
assessment of the pilot SMP, utilising both quantitative and qualitative data. Such an
approach has been recognised as being essential in gaining a comprehensive
understanding of the human experience (Yardley and Bishop, 2008). Any outcome
measures utilised throughout the assessment will have undergone a comprehensive
appraisal (Davies, 2009a,b).
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2. Aims and Objectives
The primary aim of this study is to pilot the HOPE SMP programme for women survivors of
breast cancer. This will be achieved by meeting the following objectives:
‣ Develop a tailored SMP for breast cancer survivors, based on the previously
validated HOPE programme.
‣ Evaluate course integration into service improvement.
‣ Train professional and peer coaches to deliver the programme.
‣ Evaluate patient-reported improvements.
‣ Evaluate service improvements.
3. Research Process
3.1. Recruitment to Course
Three cohorts of approximately 14 breast cancer survivors per group will be recruited, along
with 4 women being on a ‘waiting list’ in case of drop out. Women diagnosed with breast
cancer will be introduced to the SMP at the time of diagnosis, and provided with more
specific information in the form of participant information packs at the time of entering posttreatment
follow-up (i.e. 6-weeks after their final treatment). Recruitment on to the SMP will
take place during the same post-treatment period.
The inclusion criteria for SMP recruitment are:
Primary Breast Cancer
Post-treatment (i.e. 6-weeks after final treatment session)
The exclusion criteria are:
Metastatic cancers
Under 18 years of age
Recruitment will be on a ‘first-come, first-serve’ basis, with excluded patients being provided
with the opportunity to take part at a later date if the pilot is successful.
Updated recruitment plan
(i) Course 1(commenced 10/11/09)
14 potential participants from the post treatment session Sept 09 7 – participants
commenced – 3 attrition by week four.
Send baseline questionnaires out to the 7 patients who declined the offer of the
course ND – 4/12.
Send end of course questionnaires out to the 3 patients who have dropped out by
4/12 ND
Complete end of course questionnaire on 15/12 – ND
Ask one of the course participants if she would come and talk to patients at the post
treatment group meetings about the course and her experience of it. AL
(ii) Course 2 (to commence April 10)
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Aim to recruit minimum of 20 participants on the basis of drop out.
Raise awareness with key nurses as to the presence of the course – so that they can
promote and inform patients from diagnosis onwards – AL to have some one to one
meetings.
Provide supplies of the course information leaflet in strategic places – clinics etc, and for
Breast Friends, and get some poster size leaflets to put up in strategic places – AL
Post Treatment Groups:
Dec/Jan/Feb/Mar – AL 15 minute presentation and discussion
Full contact details from admin – with NHS numbers and
telephone contact as well as addresses
Administration /completion of the baseline questionnaires at
the end of the session – all
Inform all that irrespective of participation on the course –
would like to complete the Qs
Attempt to have one of the participants from course 1 in
attendance – to describe experience. If this is not possible –
include the co-tutor from course 1.
If Dec group takes place, - send invite letters out before
Christmas – latest 21 st Dec if possible. AL
*21 st January – presentation and discussion to post-treatment
group, accompanied by a cohort 1 attendee who shared a
poem about her experience; 5 BENPCT patients in attendance
and will return forms if interested in attending HOPE.
Venue
Review the experience of the current venue, and consider the need for alternative settings –
non hospital based. AL *To continue at Good Hope Hospital, based on patient preference.
However, held 12-3pm, as opposed to in the evening, based on feedback from tutors.
3.2. Delivery of Course
a) Tutor Recruitment
Each course will be delivered via a co-tutor approach by one trained nurse and one trained
peer (a breast cancer survivor):
Two nurses from Birmingham PCT have volunteered to train as professional tutors
for the SMP. Training will be carried out over three days (2 + 1).
Peer tutors will be invited in the following ways:
o Selected patients who have completed treatment and have been identified by
the Breast Clinical Nurse Specialists at Good Hope Hospital and the
Community Cancer Specialist Nurse
o Breast Friends – the local breast support charity
o Macmillan Cancer Voices – Opportunities Exchange,
the only criteria being that they must have completed their treatment. Interested women will
be invited to an ‘Information Day’ organised to provide them with the necessary details to
make an informed decision regarding their involvement. For those who remain interested,
training will be carried out over 3/4 days.
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) Tutor Training
Training for both tutors will include a highly interactive programme of learning, reflecting on
personal skills, recognising the underlying core values embedded in the programme, and
developing the competences required to deliver the HOPE programme. A manualised
delivery protocol will be produced for facilitators, which will assist future dissemination of the
programme.
The training meets many of the requirements of the NICE ‘Public Health Guidance 6:
‘Behaviour change at population, community and individual levels’ and includes:
Setting and agreeing patient-focused behavioural contracts (i.e. asking people to
share their plans and goals with others)
Intention-formation (i.e. helping people to form plans and goals for changing
behaviours, over time and in specific contexts)
Outcome expectancies (i.e. helping people to develop accurate knowledge about the
health consequences of their behaviours)
Personal norms (i.e. promoting personal commitments to behaviour change)
Positive attitude (i.e. promoting positive feelings towards the outcomes of behaviour
change)
Relapse prevention (i.e. helping people develop skills to cope with difficult situations
and conflicting goals).
Self-efficacy (i.e. enhancing people’s belief and confidence in their ability to change).
c) Venue
The venue for the SMP will be the Partnership Learning Centre at Good Hope Hospital,
Birmingham.
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3.3. Project Timetable
Recruitment onto the three SMP cohorts will be staggered, as shown in Table 1.
Table 1: Project Timetable
Cohort Baseline Taster
Session
1 W/C 5 th
October
2009
2 W/C 8 th
March 2010
29th March
2010
Venue:
Education
Centre,
Good Hope
Hospital
Time: 2pm -
3.30pm
SMP Delivery
November 2009
(10 th ; 17 th ; 24 th )
December 2009
(1 st ; 8 th ; 15th)
April 2010 (22 nd ,
29 th )
May 2010 (6 th ;
13 th ; 20 th , 27th)
6-months
Follow-Up
W/C 14 th
June
2010
W/C 15 th
November
2010
12-months
Follow-Up
W/C 6 th
December
2010
W/C 16 th
May 2011
3 W/C 10 th
May 2010
4th June
2010
Venue:
Library
Time: 2pm -
3.30pm
June
2010 (10 th ; 17 th ;
24 th ) July 2010
(1st; 8 th ; 15 th )
W/C 10 th
January
2011
W/C 11 th
July
2011
4. Measurement of Outcomes
4.1. Expected Outcomes
As a consequence of taking part in the SMP, it is expected that patients will:
Gain confidence in self-management
Gain confidence in seeking information
Gain confidence in communicating with health care providers
Increase their physical activity
Eat more healthily
Feel more hopeful
Experience more gratitude
Experience an improvement in quality of life
Report more productive, collaborative healthcare utilisation.
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4.2. Outcome Measures
Baseline Data:
Identifying Information: Name; Address; Phone Number; Hospital No.
Demographic Data: Age 4 ; Ethnicity; Marital Status 5 ; Educational Status 6 .
Disease-Related Data: Primary or Secondary Disease; Type of Treatment
(Adjuvant v’s Neo-adjuvant; Surgery, Chemotherapy, Radiotherapy, Hormone
Therapy); Duration of Treatment; Medications; Co-morbidities 7 .
Health Behaviour Check: Perceived Health Status 8 ; Self-management efficacy;
Exercise; Diet; Alcohol; Smoking.
A core set of data will be collected through questionnaire completion, at baseline, on the final
session, and then 6 and 12 months post-SMP. Details of data collection and analysis are
presented in Table 2.
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Table 2: Evaluating the HOPE Self-Management Programme
Patient
Experience
Outcome Measure Data Collection Data Analysis
Improved healthrelated
quality of
life
Quality of Life of
Adult Cancer
Survivors (QLACS)
(Avis et al., 2005)
Pre-course, returned by hand on first day of
SMP. Collected by Anna Lynall (Project
Support). 1
Final session, administered and collected by
Nicola Davies (Project Evaluation Coordinator).
6 and 12 months post-SMP, by post. Mailed by
Becky Wadsworth (Macmillan Administrator),
including a SAE for return to Kelly Fisher
(Service Improvement Facilitator). *Two-week
follow-up prompt for return of questionnaires.
Collected from Kelly Fisher by Nicola Davies.
All QLACS 2 data to be analysed by Nicola
Davies, including QLACS from Telecare:
- Significant changes (i.e.
improvement/decline) from:
1) baseline to end of course
2) baseline to 6mths
3) baseline to 12mths
4) end of course to 6mths
5) end of course to 12mths.
- Significant differences between
SMP and Telecare.
- Significant relationships between
changes in quality of life and
changes in self-management
skills (heiQ) and health
behaviours (HBC; GPPAQ).
Increase in
healthy eating
and physical
activity
Health Behaviour
Check (HBC)
(Michie et al., 2008)
General Practice
Physical Activity
Questionnaire
Pre-course, returned by hand on first day of
SMP. Collected by Anna Lynall. 1
Final session, administered and collected by
Nicola Davies.
6 and 12 months post-SMP, by post. Mailed by
Becky Wadsworth, including a SAE for return
to Kelly Fisher. *Two-week follow-up prompt
Nicola Davies to evaluate:
- Significant changes from:
1) baseline to end of course
2) baseline to 6mths
3) baseline to 12mths
4) end of course to 6mths
5) end of course to 12mths.
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(GPPAQ)
2006b)
(DH,
for return of questionnaires. Collected from
Kelly Fisher by Nicola Davies.
- Significant relationships between
changes in health
behaviours/physical activity and
changes in quality of life (QLACS)
and self-management skills
(heiQ).
Confidence and
motivation to
self-manage
condition
Health Education
and Impact
Questionnaire
(heiQ): Selfmonitoring
and
Insight; Skill and
Technique
Acquisition; Health
Service Navigation
(Nolte et al., 2007)
Pre-course, returned by hand on first day of
SMP. Collected by Anna Lynall. 1
Final session, administered and collected by
Nicola Davies.
6 and 12 months post-SMP, by post. Mailed by
Becky Wadsworth, including a SAE for return
to Kelly Fisher. *Two-week follow-up prompt
for return of questionnaires. Collected from
Kelly Fisher by Nicola Davies.
Nicola Davies to evaluate:
- Significant changes from:
1) baseline to end of course
2) baseline to 6mths
3) baseline to 12mths
4) end of course to 6mths
5) end of course to 12mths.
The impact of the SMP will be
represented by three standardised
categories of change derived from
baseline and follow-up course
assessments: 3
+ substantial improvement = effect size
equal to or above 0.5
+ minimal/no change improvement =
effect size of -0.49 to 0.49
+ substantial decline = effect size equal
to or below -0.5.
- Significant relationships between
changes in heiQ scores and
changes in health
behaviours/physical activity (HBC;
GPPAQ) and changes in quality of
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life (QLACS).
Feelings of hope
State Hope Scale
(Snyder et al., 1996)
Pre-course, administered on the first day of
SMP by Andy Turner (HOPE Leader, Coventry
University).
Final session, administered and collected by
Andy Turner.
Andy Turner to assess changes in
feelings of hope from pre-course to final
session, and again at 6 and 12-months
post-course.
6 and 12 months post-SMP, by post. Mailed by
Andy Turner, including SAE.
Feelings of
gratitude
The Gratitude
Questionnaire
Questionnaire
(McCullough et al.,
2001)
Pre-course, administered on the first day of
SMP by Andy Turner.
Final session, administered and collected by
Andy Turner.
Andy Turner to assess changes in
feelings of gratitude from pre-course to
final session, and again at 6 and 12-
months post-course.
6 and 12 months post-SMP, by post. Mailed by
Andy Turner, including SAE
Patterns of
healthcare
utilisation
Lorig’s Healthcare
Utilisation Scale
(Lorig et al., 1996)
Pre-course, administered on the first day of
SMP by Andy Turner.
Final session, administered and collected by
Nicola Davies.
6 and 12 months post-SMP, by post. Mailed by
Becky Wadsworth (Macmillan Administrator),
including a stamped addressed envelope for
return to Kelly Fisher (Service Improvement
Facilitator). *Two-week follow-up prompt for
Nicola Davies to explore patterns of
healthcare utilisation, including any
significant changes, as well as any
relationships between healthcare
utilisation and scores on QLACS,
GPPAQ, HBC, and heiQ.
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eturn of questionnaires. Collected from Kelly
Fisher by Nicola Davies.
Satisfaction with
the SMP
Health Education
and Impact
Questionnaire
(Programme
Evaluation) (Nolte et
al., 2007)
Post-course, at the end of the final session,
administered by Nicola Davies.
Nicola Davies to assess, using
descriptive statistics (i.e. percentages)
to illustrate satisfaction with the SMP.
Satisfaction with
experience of
intervention
5-items of the Picker
Experience of Care
Questionnaire
Administered at the final SMP session by
Nicola Davies.
Administered at the end of the other three
interventions by Project Leads and returned to
Kelly Fisher to forward to Nicola Davies.
Nicola Davies to evaluate any significant
differences between the experiences of
care received across the four
workstreams (i.e. SMP; Telecare;
Bridges, ACM).
1 All participants who declined attendance at the SMP will be sent pre-course baseline questionnaires, as mailed by Becky Wadsworth
with a stamped addressed envelope for return to Kelly Fisher. *Two-week follow-up prompt for return of questionnaires. Collected
from Kelly Fisher by Nicola Davies and evaluated for similarities within the group of non-responders/decliners, as well as differences
between non-responders/decliners and attendees.
2 QLACS returned questionnaire responses will be entered onto an SPSS statistical database by a cancer network Administrator,
using guidelines provided by Nicola Davies.
3 The distribution-based cut-off of 0.5 ES was chosen as a standardised cut-off and approximates a minimal important difference
(MID) derived from several methodologies.
*Each participant’s attendance will be recorded by Course Tutors, as overseen by Anna Lynall.
*Cost-effectiveness will also be examined post-intervention by Birmingham PCT.
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4.3. Focus Groups and Interviews
Focus groups for HOPE participants will be held after the last intervention session. Semistructured
interviews with tutors will be held after each completion of the three HOPE
interventions. A random subsample (n=3) of participants from each HOPE programme will
also take part in a 6-month follow-up semi-structured interview to describe any lasting impact
of the HOPE programme.
5. Methods of Analysis
Quantitative data elicited from questionnaires will be examined for statistical significance via
the Statistics Package for Social Scientists (SPSS). It is anticipated that multiple regression
analyses will be used in order to determine the extent that the SMP contributes to patientreported
outcomes.
Qualitative data will be analysed using Framework Analysis (Ritchie & Spencer, 1994),
which was developed in the context of applied policy research to produce outcomes or
recommendations. Framework analysis is often used where there are specific issues being
addressed and where some themes are generated from a priori of issues identified in the
research questions. However, the methodology is flexible enough to allow other themes to
emerge from the data.
6. Delivery Team
Lynn Batehup - Project Manager for the Self-Management Workstream
o Responsible for the design and coordination of the project and for ensuring that all
aims and objectives are met with a rigorous manner.
Kelly Fisher – Service Improvement Facilitator
o Responsible for facilitating communication between Macmillan and Birmingham PCT.
Nicola Davies – Self-Management Programme Evaluation Coordinator
o Responsible for the methodological preparation and evaluation of the SMP, the
production of protocols and reports, and advising on appropriate outcomes.
Suma Surendranath – Self-Management Learning Programmes Development Manager
o Responsible for the strategic and operational delivery of the SMP, providing ongoing
support to SMP leaders.
Dr Andy Turner – Professional HOPE course leader
o Responsible for the delivery of the HOPE course and the evaluation of the course.
Dave McHattie – Lay HOPE course leader
o Responsible for the delivery of the HOPE course.
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Anna Lynall – Project Support
o Responsible for supplying onsite support, including facilitating data collection.
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Footnotes
1 A rapid review aimed at updating that of ‘Evidence to inform the Cancer Reform Strategy:
The clinical effectiveness and cost-effectiveness of follow-up services after treatment for
cancer, ‘as conducted by the Centre for Reviews and Dissemination (2007) is currently
underway.
2 Davies, NJ (2009a,b) Self-Management Programmes for Cancer Survivors: A Structured
Review of Outcome Measures, commissioned by Macmillan Cancer Support for the NCSI.
3 A report by the Picker Institute, commissioned by NHS Improvement and Macmillan Cancer
Support, demonstrated an implicit assumption among survivors and carers that ‘follow-up’
care occurs when treatment has ended (Sheldon, Davis, and Parsons, 2008). Therefore, the
baseline measurement period of 6-weeks post-treatment encompasses this shared definition
whilst also providing time between final treatment and the intervention for survivors to
become socially reintegrated.
4 Health status evaluations have been demonstrated to change according to age and illness
(Kaplan and Orna Baron-Epel, 2002); Demographic variables such as age and educational
status might be important predictors of quality of life and thus need to be controlled when
analysing data (Wenzel et al, 1999).
5 Evidence exists in the way of social support being a potential buffer against disease
progression (Smith et al., 1994), as well as being positively associated with better
psychological well-being (Stanton and Snider, 1993; Rodrigue, Behen, and Tumlin, 1994)
and better psychosocial adjustment (Heim et al., 1997).
6 It is important to control for socio-economic status (SES) as it is related to health
behaviours, such as breast screening (Yarbrough and Braden, 2001). However, the most
effective method of measuring SES has been under debate, with potential indicators being
income, occupation, postcode, educational status, to name a few (Deonandan et al., 2000;
Shavers, 2007). Educational attainment is perhaps the most widely used indicator of SES
due to the ability to characterise the educational achievement level of most individuals.
Furthermore, education can be seen as the most basic component of SES because of its
influence on other SES indicators such as occupation and income (Adler and Newman,
2002). There are several possible mechanisms through which education might influence
health status. For example, people with higher education may have developed better
information-processing and critical thinking skills, skills in navigating health services, and
abilities required to interact effectively with healthcare providers. Individuals with higher
education may also be more likely to be socialised to health-promoting behaviour and
lifestyles, and have better work, economic conditions, and psychological resources (Ross
and Mirowsky, 1995; Yen and Moss, 1999). An advantage of using education as a measure
of SES for adults is that the likelihood of reverse causation (e.g., which came first, poor
health or low SES)—which can be a problem with other standard SES measures—is
reduced, as education is usually complete before detrimental health effects occur (Stewart,
2001).
7 Co-morbidities have been found to correlate with various dimensions of quality of life in
women with breast cancer (Davies et al., 2008).
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8 Health status and quality of life are distinct concepts; improvement with one doesn’t
necessarily correlate with improvements in the other, yet both are important indicators of
outcome. In a number of studies self-rated health has been found to be an excellent
predictor of future health and so improvements in this will be important for long-term wellbeing
even if benefits are not yet evident. The most widely used measure of self-rated
health is a one-item rating scale used in the National Health Interview Survey (Idler and
Angel, 2000).
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