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How to summarise and report written qualitative data from patients: A method for use in cancer support care

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The goal of this study is the determination of key themes to aid the analysis of qualitative data collected at three cancer support centres in England, using the Measure Yourself Concerns and Wellbeing (MYCaW) questionnaire. People with cancer who use complementary therapies experience and value a wide range of treatment effects, yet tools are urgently required to quantitatively measure these outcomes. MYCaW is an individualised questionnaire used in cancer support centres providing complementary therapies, scoring 'concerns or problems' and 'well-being' and collecting qualitative data about other major events in a patient's life and what has been most important to the patient. Content analysis on 782 MYCaW questionnaires from people at these cancer support centres was carried out. The 'concerns,' 'other things going on in their life' and 'important aspects of centre' were thematically categorised and externally validated by a focus group, and the inter-rater reliability was calculated. Clinical information from a cancer patient's perspective was collected that is not measured on standard quality-of-life questionnaires; furthermore, some themes acknowledge the multi-faceted aspects of complementary and alternative medicine provision, rather than information only relating to the therapeutic intervention. Categories for qualitative MYCaW analysis have been established providing a tool for future research and/or service delivery improvement within cancer support centres such as these. The established themes provide a framework to aid analysis of qualitative aspects of complementary therapy care for people with cancer, improving our understanding of how the patient's cancer experience can be aided by complementary therapies in specialised cancer centres.
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WestminsterResearch
http://www.wmin.ac.uk/westminsterresearch
How to summarise and report written qualitative data from
patients: a method for use in cancer support care.
Marie J. Polley
1
Helen E. Seers
2
Helen J. Cooke
3
Caroline Hoffman
3
Charlotte Paterson
4
1
School of Integrated Health, University of Westminster
2
Penny Brohn Cancer Care, Chapel Pill Lane, Pill Bristol, BS20 0HH, UK
3
Breast Cancer Haven, Effie Road, London, SW6 1TB, UK
4
Institute of Health and Social Care Research, Peninsula Medical School, St Luke’s
Campus, Heavitree Road, Exeter, EX1 2LU, UK
This is an electronic author-formatted version of an article published in Supportive
Care in Cancer, 15 (8). pp. 963-971, August 2007.
http://dx.doi.org/10.1007/s00520-007-0283-2
The original publication is available at www.springerlink.com
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1
Marie J. Polley
1
, Helen E. Seers
2
, Helen J. Cooke
2
, Caroline Hoffman
3
, Charlotte Paterson
4
How to summarise and report written qualitative data from patients: A method for use
in cancer support care
1
Department of Complementary Therapies
University of Westminster, 115 New Cavendish Street
London W1W 6UW
United Kingdom
2
Penny Brohn Cancer Care
Chapel Pill Lane, Pill
Bristol BS20 0HH
United Kingdom
3
Breast Cancer Haven
Effie Road
London SW6 1TB
United Kingdom
4
Institute of Health & Social Care Research
Peninsula Medical School
St Luke's Campus, Heavitree Road
Exeter EX1 2LU
United Kingdom
Part of this work was supported by a £20,000 grant received from Glaxo SmithKline, by the
corresponding author whilst working at Breast Cancer Haven. The rest of the work has been
funded through Penny Brohn Cancer Care and University of Westminster.
Address for Correspondence:
Dr. Marie J Polley
Department of Complementary Therapies
University of Westminster, 115 New Cavendish Street
London W1W 6UW
UK
Tel: 020 7911 5000 Extn 3917
Fax: 020 7911 5028
Email: polleym@wmin.ac.uk
2
Abstract
Goals of work: Determination of key themes to aid the analysis of qualitative data collected at
three cancer support centres in England, using the Measure Yourself Concerns and Wellbeing
(MYCaW) questionnaire. Patients and methods: People with cancer who use complementary
therapies experience and value a wide range of treatment effects, yet tools are urgently
required to quantitatively measure these outcomes. MYCAW is an individualised
questionnaire used in cancer support centres providing complementary therapies, scoring
‘concerns or problems’ and ‘wellbeing’ and collects qualitative data about other major events
in a patient’s life and what has been most important to the patient. Content analysis on 782
MYCaW questionnaires from people at these cancer support centres was carried out. The
“concerns”, “other things going on in their life” and “important aspects of centre” were
thematically categorised, externally validated by a focus group and the inter-rater reliability
calculated. Main results: Clinical information from a cancer patient’s perspective was
collected that is not measured on standard quality of life questionnaires; furthermore some
themes acknowledge the multifaceted aspects of CAM provision, rather than information
only relating to the therapeutic intervention. Categories for qualitative MYCaW analysis have
been established providing a tool for future research and/or service delivery improvement
within cancer support centres such as these. Conclusions: The established themes provide a
framework to aid analysis of qualitative aspects of complementary therapy care for people
with cancer, improving our understanding of how the patient’s cancer experience can be
aided by complementary therapies in specialized cancer centres.
Keywords: Cancer, Complementary therapies, MYCaW, Qualitative analysis, Outcome
measures
3
Introduction
Complementary and alternative medicine (CAM) is being increasingly used in Western
countries, mainly in a complementary and supportive role after a cancer diagnosis [4, 7, 16].
In the UK, cancer support services have developed as a result of the needs of people with
cancer and these centres often use complementary therapies and self-management techniques
as part of individualized patient-centred care. This care can address patient needs on a
physical, emotional, psychological and spiritual level.
From experience, staff at these support services understand the necessity of evaluating
the internal quality of their service for clinical improvement, as well as the outcome of the
care provided for future patients, potential funding and regulatory bodies. The use of
Integrative Health Care (IHC) in the field of cancer support therefore requires tools that can
encompass the whole range of benefits and problems that are important to patients.
Research on CAM and cancer has described a range of different outcomes
experienced by cancer patients usually using self-report questionnaires that have collected
quantitative data [3, 5, 6, 8, 9, 11, 21]. Not initially designed for CAM and cancer research,
these questionnaires, such as traditional quality of life measures, are ill suited to capture the
range of likely treatment effects from CAM experienced by people with cancer [3, 8, 21]. It is
increasingly recognized that these measures do not capture the complete range of benefits
reported by patients, such as spirituality [5, 6, 9, 11]. To illustrate this point further, a recent
systematic review of 52 quantitative studies, including a range of methodologies from
standardised questionnaires to semi-structured interviews, cited ‘a perceived beneficial
response, wanting control, a strong belief in CAM, CAM as a last resort, and finding hope’ as
the main reasons that people with cancer give for using CAM [17].
In order to augment the evidence base for the use of CAM in the cancer setting all
aspects of the experience of receiving cancer support care are recorded. Self-report
4
questionnaires aim to encompass the main patient-reported outcomes, but essentially do not
allow patients to define their own priorities nor to describe their experiences in their own
words. Since 1996, 42 qualitative investigations have been published on PubMed explaining
why people with cancer seek CAM treatments and the benefits they experience, if any. These
studies not only allow the patient’s perspective to be expressed more directly and in more
depth, but they also extend our understanding of what components of the process and
outcomes of CAM are experienced and valued by people with cancer. For example, a study
of cancer patients attending an integrative clinic in Vancouver found that participants
identified six types of benefits: improved physical wellbeing, change in physiological
indicators, improved emotional wellbeing, personal transformations, feeling connected,
global state of wellbeing, and cure [18].
[Insert Figure 1 about here]
The Measure Yourself Concerns and Wellbeing (MYCaW) tool is an individualized
questionnaire for measuring outcomes in cancer support care (See Figure 1)
1
. It was
developed and piloted at the Cavendish Cancer Centre and Penny Brohn Cancer Care (PBCC)
(formerly Bristol Cancer Help Centre) to evaluate the complete experience of a patient with
cancer using complementary therapies [12]. The main difference with this tool and other self
report questionnaires is that it allows the cancer patient to describe and score the severity of
their most pressing concerns and their wellbeing. Written qualitative information regarding
other major events going on in their life and what has been most important to the patient is
recorded at the end of their treatment package. MYCaW is also quick to fill in, so it does not
interfere with the therapeutic consultation.
1
The inclusion criteria category information and instructions for new users can be accessed on the MYMOP
website: http://www.hsrc.ac.uk.mymop/MYCaw.htm
5
MYCaW has now become a popular tool to obtain patient reported outcomes
regarding many aspects of complementary therapies, being used in at least 10 other cancer
care centres in the UK and a few centres in North America. Currently the MYCaW tool is
recognised as appropriate to the cancer service offered, acceptable to patients, practitioners
and researchers and responsive to change. Because of the inherent difficulty in summarising
written qualitative data, much of the data that is collected is not systematically reported and
therefore is lost in terms of research and evaluation outputs. Not only is this wasteful, but
unacceptable in terms of asking patients their views and then not reporting them.
This paper draws on the data from 782 patients, collected over the years of 2004-2006
during the systematic use of MYCaW as an evaluation tool in 3 cancer support centres in
England. Breast Cancer Haven (BCH) is a registered charity that runs two ‘day centres’
offering support, information and complementary therapies to anyone affected by breast
cancer. The Haven Programme has been designed to help patients feel better and develop a
healthier lifestyle. BCH works with the NHS and other healthcare professionals to promote
and provide responsible and effective integrated breast cancer care. PBCC is the UK’s
leading holistic cancer charity working hand-in-hand with medical treatment, to provide a
unique combination of physical, emotional and spiritual support using complementary
therapies and self-help techniques, including practical advice on nutrition for all types of
cancer.
This study describes the method by which we have conducted a thematic analysis of
the MYCaW qualitative data and used this process to develop robust categories. These
category systems are provided as a tool to use alongside the MYCaW questionnaire, so that
future use of MYCaW will result in an analysis of both the quantitative and qualitative data,
thus providing richer and more meaningful outcomes. A more extensive analysis of the
6
quantitative and qualitative data from this study will be reported in a subsequent paper (Seers
H et al. in preparation).
Patients and methods
Administration of the questionnaire
Data were collected from 782 patients between 2004-2006 at BCH in London (n=268) and
Hereford (n=153) and at PBCC (n=361). At Breast Cancer Haven the MYCaW form was
completed between September 2004 and January 2006, and, at Penny Brohn Cancer Care the
data were collected between January 2004 and December 2005. At Breast Cancer Haven
Centres the baseline MYCaW form was administered during the therapy assessment (prior to
receiving therapies) and subsequently at the end of the therapy programme. The follow-up
MYCaW form was sent with a stamped addressed envelope, when a patient had received 10
hours of individualised therapies or had not returned for three months. There is no time limit
on when patients take their appointments, as the programme is designed to fit around the
conventional cancer treatment regime, hence the duration between the forms ranged from 2
months to 12 months. For PBCC, the baseline MYCaW was sent out in the post prior to
arriving at the 2 day or 5 day residential course for the person to reflect on prior to their visit
and then filled upon their arrival. The Follow-up MYCaW form was sent out with a stamped
addressed envelope 4 weeks after the residential course was completed.
Briefly, a patient recorded ‘one or two concerns or problems’ that they most wanted
help with and scored the severity between 0 (not bothering me at all) to 6 (bothers me
greatly). ‘Wellbeing’ was also scored using 0 (as good as it can be) to 6 (as bad as it can be).
On the follow-up MYCaW questionnaire the patient rescored their concerns and wellbeing
without seeing their original scores (they could refer to the concerns they described). Patients
7
also had the option of completing two additional questions ‘other things affecting your
health’ and ‘what has been most important for you?’
Qualitative analysis of the data
Three aspects of the MYCaW form required qualitative data analysis - the ‘concerns and
problems’ category on the first form and ‘other things affecting your health’ as well as ‘what
has been most important for you?’ from the follow-up form.
Inductive content analysis was performed first independently and then together by
two researchers, one at BCH and one at PBCC. Inductive analysis was used alongside the
researcher’s own contextual understanding and experience of working at the centres which
allowed the qualitative data to be interpreted in a meaningful way. It was acknowledged that
the diversity of backgrounds, experience and qualifications, as well as the research views of
the wider team broadened our perspective on the research data and their categorization. As a
tool for examining our theoretical stance to ensure clear communication within the research
team, reflective questions developed by Barry et al. were used [2, p. 38]; these were answered
by each member of the research team and circulated for discussion.
Initially, BCH’s London data (n=268) was analysed independently by each researcher
from BCH (MJP) and PBCC (HS). The researchers then compared their results to define the
emerging themes and a set of categories were recorded. During the independent coding, there
was an initial overlap in emerging themes of approximately 90% by the researchers. The
differences in categories were discussed in detail during weekly phone meetings until
agreement was reached and improved categories developed. Each researcher then
independently applied the improved categories to the data set from BCH in Hereford
(n=153). The process of comparing results and discussing amendments between the
8
researchers was repeated and the amended categories were once again tested independently,
but this time using the data set from PBCC (n=361). Minor adjustments were made to some
categories to ensure that the categories were suitable to all cancer types and were clear for the
researcher who worked at the ‘other’ cancer support centre.
Detailed descriptions of what the researchers included in each category were recorded
as the categories were developed to enable a set of ‘category inclusion criteria’ to be
developed. For example, Figure 2 shows a section of the inclusion criteria for categorising
‘body image concerns’ and ‘confidence issues’ in the Psychological and Emotional Concerns
Supercategory (see Table 1). The instructions describe what other words may be associated
with the category, how broad the remit of the category is and in some cases when to refer to a
different category.
[Insert Figure 2 about here]
Internal validation by service-user focus group
To ensure that the internal validity of the qualitative categories derived from each aspect of
the questionnaire, five women (age range 49-71) who were previous users of PBCC (4 had a
previous diagnosis of cancer, 1 was a supporter of a person with cancer), attended a focus
group. Recruited was facilitated through posters in the PBCC building, advertising for a focus
group needing people who were previous service users. The focus group was also attended by
one of the authors of this paper (HS) and was facilitated by a researcher from the University
of West of England who had extensive experience of working with people with cancer.
Specifically, the language used to name and describe each category was assessed for
acceptability to the users. The definitions derived for each category were then reviewed and
9
discussed for clarity of language and appropriateness of interpretation of the comments.
Finally, the group members were asked to create supercategories from the number of
categories of ‘concerns and problems’. This was done by forming two subgroups with
enlarged cut-out photocopies of the categories with their corresponding definitions. The cut-
out categories were re-arranged into “supercategories” by the two groups for 10 minutes;
groups were free to create as many supercategories as they wanted. The groups were also told
there was no right or wrong answer. They then fed back their supercategories to the group
facilitator who wrote them on a flip chart.
Results
Content analysis and categorisation of the qualitative MYCaW data
‘Concerns and Problems’
The concerns and problems section was filled in by a total of 782 patients (268 from BCH in
London, 153 from BCH in Hereford and 361 from PBCC). Figure 3 shows the type of
concerns and problems that were recorded by the patients. The patients were encouraged to
be succinct in their answers; even so, some answers that on the surface constituted one
concern actually represented multiple key concerns. In that case, each subject/category was
treated as a separate concern when categorising the data. Table 1 shows the categories of the
‘concerns and problems’ and how they were subsequently arranged into supercategories by
the service-users focus group.
[Insert Figure 3 about here]
[Insert Table 1 about here]
10
‘Other things affecting your health’
Figure 4 records a few of the comments made by the cancer patients in this section. Clear
themes emerged from this data which were organised into categories and then supercategories
upon advice from the service-users focus group (Table 2). The data were derived from
London (n=101), Hereford (n=69) and PBCC (n=237); the numbers of responses were lower
for this question, as not all follow-up forms were received and not every person felt that they
had anything relevant to insert in this section. The categories were generally either negative
or positive in inference although this was impossible to determine for approximately 15% of
the data.
[Insert Figure 4 about here]
[Insert Table 2 about here]
‘What has been most important for you?’
The data came from BCH (n=151), Hereford (n=86) and PBCC (n=351). Not every person
felt the need to fill out this section which is reflected in the lower numbers involved. This
section yielded some of the longest reflective data about the important aspects of the centre
that was visited (See Figure 5 for examples). These rich data support the multifaceted
benefits derived from complementary therapy interventions as a whole, as well as highlight
the importance of the environment, the attitude of the therapists and other staff, as well as the
benefit of being able to communicate with other patients in similar circumstances. The
themes that emerged in this section are in Table 3. As only 11 themes emerged, it was felt
unnecessary to create supercategories.
[Insert Figure 5 about here]
11
[Insert Table 3 about here]
Feedback from the service-user focus group
After the initial content analysis had been performed a focus group was convened to
externally validate details of these categories. The group considered the appropriateness and
acceptability of category names, for instance the word ‘Tamoxifen’ was changed to hormone
treatment to be more inclusive of different cancer types and hormone-based treatments.
Service-users also created a set of supercategories for the ‘concerns and problems’ data.
Although the suggested supercategories initially overlapped, a single set of supercategories
were easily agreed on by all in attendance. Finally, the focus group debated the usefulness of
organising the ‘what else is going on in your life’ categories as positive and negative
experiences. The group agreed that this was a useful distinction to make even though it risked
classifying experiences in a polarised way.
Inter-rater reliability
After validating the content and language of the established categories with the focus group,
the inter-rater reliability score was calculated to establish the consistency of the content
analysis of the data by two different researchers. The kappa value was 0.85, representing
excellent agreement between the coding of the categories by the two researchers.
12
Discussion
Content analysis of the data and perspective of the researcher
The researchers (MJP and HS) both found that the approach in which the data were
categorised was influenced by their differing academic perspectives. HS had a background in
psychological research and MJP had a biomedical background, hence, the categorisation of
words was influenced by the perspective of these academic disciplines. This was the primary
reason for a 10% difference in category derivation for the initial analysis of the ‘concerns and
problems’ data. To reach agreement, extensive negotiation was carried out which usually
consisted of each researcher explaining their rationale for the categorisation to the other
researcher. Detailed notes made to reflect how this final decision was made were used to
construct the ‘coding inclusion criteria’ (Figure 2). Similar observations were made by
Waitzkin [19] when describing two research assistants ‘thrashing out’ their agreements and
disagreements in coding qualitative data. The difference in academic backgrounds again
created conflict between the researchers when deriving supercategories for the ‘concerns or
problems’ data (Table 1), and ‘other things affecting your health’ (Table 2). Armstrong et al.
demonstrated that when 6 researchers analysed one transcript they derived “consensus in the
identification of themes between different analyses but that the ‘packaging’ of the themes
showed a number of different configurations” [1].
MJP and HS had a similar experience when trying to configure the 32 initial
categories into supercategories for the ‘concerns or problems’. In fact, when the wider
research team was consulted, no complete agreement on organisation of supercategories was
reached, as everyone had a different academic perspective. The importance of involving the
‘users’ in this research was recognised as essential [10, 15], and to resolve the supercategory
derivation, the researchers felt it was necessary to let the service-users make the decision
13
within a focus group setting, hence reflecting upon their own experience of cancer. The
benefits of focus group methodology are succinctly described by White and Verhoef [20].
During the focus group, participants also discussed whether the interpretation and use of
language in the categories was acceptable to them. Very few changes in language or
categorisation were suggested which demonstrated external validation of the content analysis,
and reassured the researchers that the qualitative analysis accurately reflected the experiences
of the cancer patients.
Elucidating what had been most important for the patient (Table 3) was dependent on
the knowledge of how the therapy programmes worked in each cancer support centre.
Inductive content analysis was used to evaluate the qualitative data on the MYCaW forms as
the researchers recognised that some of the analysis could be dependent upon the research
training and perspective of the researcher within each organisation. During the initial content
analysis of the question: ‘what had been most important for you?’ separate categories
of ’individual therapies’ and ‘group therapies’ were created. Some complementary therapies
can be practised on an individual basis or as a group, and unless the researchers knew the
details of a centre’s therapy programme, they found it difficult to accurately distinguish
between these categories.
The researchers were particularly keen to construct a tool that is meaningful beyond
an individual organisation or the background of a researcher, thus not requiring a researcher
to work within the organisation to accurately use the qualitative analysis tool. In the example
highlighted above, the 2 categories relating to therapies were merged to create the final
category 2 - ‘individual and group therapies’. It would be possible for a researcher to further
analyse the ‘individual and group therapies’ category should their particular organisation
want more detail, although it was noticed that some comments pertained to particular
therapists rather than the therapy. Identifying particular therapists could create a difficult
14
atmosphere in a group of therapists within an organisation, if some therapists are mentioned
when others are not. Further analysis of this category should therefore be carried out with
discretion if the cancer setting employs many different therapists.
The deliberate step of forming supercategories where possible was taken to provide a
relatively quick and easy method of analysis, for an organisation that may not have a
researcher available but still wants to monitor their data. This approach further helped to
create a tool that could be generalised to different research and evaluation contexts.
Furthermore, the analysis framework has now been used by an independent research group to
analyse their data evaluating healing for cancer in a community setting (Vaghela C et al. in
press).The categories proved very useful in analysing their data and very few problems were
encountered by this independent group. The feedback received from the group was very
useful in clarifying minor details on ‘coding inclusion criteria’.
Several studies have picked up on similar categories to those derived in this research
study. Most notably Peace and Manasse [13] used MYMOP to measure the outcome of
cancer patients using the Cavendish Cancer Centre, and, Paterson et al. [12] went on to report
the use of MYCaW in the 2 cancer support centres in England. Both studies reported similar
‘concerns and problems’ data which were categorised into ‘Physical, Emotional, Stress
Management, Support, Hospital related and Need for a Positive Outlook’. These categories
concur with our own findings.
Verhoef et al. reviewed the reasons and characteristics associated with CAM use in
adult cancer patients [17]. Of the 52 studies reviewed, 60% had reasons for CAM use
associated with them and the majority of reasons stated across the studies can be found within
the MYCaW analysis framework. These include Supportive practitioner (category 1, Table 3);
Avoidance of progression or recurrence (S2g Table 1); Build inner strength, Improve
wellbeing, increase quality of life (S4b, Table 1); Physical distress (S2, Table 1); Searching
15
for psychological support (S1l, Table 1); Pain control (S2d Table 1); Relieve symptoms (S3
Table 1); Increased coping (S1a Table 1); Want to feel hopeful / Increase feelings of hope (S1
Table 1); Stress reduction (S1k Table 1); Relaxation (S4f Table 1); Lessening menopausal
symptoms (S2b or S3d Table 1). The studies reviewed were from Britain, Germany, Italy,
Finland, Australia, New Zealand, Canada, United States and China. Risberg et al. [14] also
examined why cancer patients in Norway use non-proven therapies, but since predetermined
reasons were provided on a multiple choice list, the range of possible answers is limited. The
study cited issues pertaining to progression and recurrence of the disease and improvement of
general condition; again these were also identified in our content analysis.
Further work by Verhoef et al. evaluated how one determines whether patients of
integrative healthcare benefit [18]. Six types of benefits were determined from 42 personal
interviews. Although our MYCaW study was not evaluating benefits in the same manner,
similarity between can be drawn Verhoef et al. [18] and the concern or problems our
participants reported. Verhoef’s categories were: ‘improved physical well-being, change in
physiological indicators, improved emotional well-being, personal transformation, feeling
connected, global sense of well-being and cure’. Feeling connected was cited by Verhoef as a
benefit of integrated health care and was also stated as a benefit in our study (see Table 3),
being with other visitors.
It is important for research and evaluation in the CAM field to acknowledge the wider
context of people’s lives. If no change or a decrease in scores on an outcome measure is
observed after a therapy package, it is very important to understand why this might be. The
initial conclusion may be to suspect that the therapies did not have their desired effect and
this may truly be the case; however, the ability to elicit wider information in order to draw a
firm conclusion is dependent on the design of the research study or the outcome measure
being used. Many other life events affect peoples’ quality of life at that point in time that may
16
also act as a negative confounding factor in their CAM treatment. It is important to
understand that these other situations may have equal or greater bearing on how a person
scores his/her wellbeing compared to the experience of having cancer. The MYCaW tool is
partly made up of scales to quantitatively measure the changes in the concerns and wellbeing
but participants are also asked to state if there were any other things affecting their health,
such as other things happening in their life. Table 2 clearly demonstrates how many
categories were cited for this question, many of which, such as bereavement, divorce, lack of
social support, family problems and change in work situations can be very stressful situations
(see Figure 3 for examples).
For many organisations, understanding the reasons for use and benefits of their
service can be essential. The information derived from the ‘concerns or problems’ can enable
an organisation to understand the breadth of problems for which help is being sought and thus
provide therapies addressing all patients’ needs. Being aware of wider issues in a person’s
life as well as their cancer has an important bearing on the perception of wellbeing for the
patient and the therapist. The benefit of complementary therapies is, however, more than just
the specific therapy. Qualities such as professionalism, experience, kindness, and
understanding were all important aspects of the whole therapeutic experience; in addition, the
environment, the resources provided, building relationships with other patients in similar
situations and stopping to listen to their own needs also contributed to this healing experience.
Conclusion
MYCaW is quick to administer and an analysis can be carried out at 2 levels of depth
depending on the resources available. A good inter-rater reliability has been established for
the qualitative analysis, and good external validity demonstrated via a service-user’s focus
group, the analysis of data from 3 cancer support centres covering all cancer types and 3
17
geographical locations. Furthermore the analysis tool has already been used by an
independent research group to analyse their MYCaW data (Vaghela C et al. in press).
Despite the numerous outcomes and quality of life questionnaires available MYCaW
is the only tool specifically designed for CAM and cancer support settings that can now
provide systematic and rigorous reporting of the patient’s experience of cancer through their
own words. Given the different research settings, methodologies and qualitative analysis
styles [14, 17, 18] similar themes are now being reported worldwide for cancer patient's
experiences, all of which should be heard and recognised when carrying out research in this
area and taken into account in the clinical setting.
Acknowledgements
The authors kindly thank Glaxo SmithKline for a £20,000 grant received by the
corresponding author whilst they were working for Breast Cancer Haven. The rest of the
work has been funded through the University of Westminster Research Development Fund
and Penny Brohn Cancer Care. The authors would like to thank all the Visitors, volunteers
and staff at BCH and PBCC who contributed to this study. Lastly, the authors would like to
thank the members of the focus group that met on 5
th
September 2006 at PBCC along with
Pat Turton who facilitated the event.
18
References
1. Armstrong D, Gosling A, Weinman J, Marteau T (1997) The place of inter-rater reliability
in qualitative research. Sociology 31:597-606
2. Barry C, Barry CA, Britten N, Barber N, Bradley C, Stevenson F (1999) Using reflexivity
to optimise teamwork in qualitative research. Qual Health Res 9:26-44
3. Bowling A (1995) Measuring disease. A review of disease-specific quality of life
measurement scales. Buckingham: Open University Press, p 21
4. Ernst E, Cassileth BR (1998) The prevalence of complementary and alternative cancer: A
systematic review. Cancer 53:2736-40
5. Long AF, Mercer G, Hughes K (2000) Developing a tool to measure holistic practice: a
missing dimension in outcomes measurement within complementary therapies. Complement
Ther Med 8:26-31
6. Meenan R (2001) Developing appropriate measures of the benefits of complementary and
alternative medicine. J Health Serv Res Policy 6:38-43
7. Molassiotis A, Fernadez-Ortega P, Pud D, Ozden G, Scott GA, Panteli V et al. (2005) Use
of complementary and alternative medicine in cancer patients: A European survey. Annals of
Oncol 16:665-63
8. Moris J (1991) Measurement of quality of life: How to choose an appropriate test. Cancer
Topics 8:75-6
9. Paterson C (2004) Seeking the patient’s perspective: a qualitative assessment of EurQol,
COOP-WONCA charts and MYMOP. Qual Life Res 13:871-81
10. Paterson C (2005) How to involve consumers in your research team. Complement Ther
Med 13:61-64
11. Paterson C, Britten N (2000) In pursuit of patient-centred out-comes: a qualitative
evaluation of MYMOP, Measure Yourself Medical Outcome Profile. J Health Serv Res
Policy 5:27-36
12. Paterson C, Thomas K, Manasse A, Cooke H, Peace G (2006) Measure Yourself
Concerns and Wellbeing (MYCaW): An individualised questionnaire for evaluating outcome
in cancer support care that includes complementary therapies. Complement Ther Med 15:38-
45
13. Peace G, Manasse A (2002) The Cavendish Centre for integrated cancer care: assessment
of patients’ needs and responses. Complement Ther Med 10:33-41
14. Risberg T, Kaasa S, Wist E, Melsom H (1997) Why are cancer patients using non-proven
complementary therapies? A cross-sectional multicentre study in Norway. Eur J Cancer
33:575-580
19
15. Rodeheaver PF, Taylor AG, Lyon DE (2003) Incorporating patients’ perspective in
complementary and alternative medicine clinical trial design. J Altern Complement Med
9:959-67
16. Sparber A, Wootton JC (2001) Surveys of complementary and alternative medicine: Part
II use of alternative and complementary cancer therapies. J Altern Complement Med 7:281-7
17. Verhoef M, Balneaves LG, Boon H, Vroegindewey A (2005) Reasons for and
characteristics associated with complementary and alternative medicine use among adult
cancer patients: A systematic review. Integr Cancer Ther 4:274-86
18. Verhoef MJ, Mulkins A, Boon H (2005) Integrative health care: How can we determine
whether patients benefit? J Altern Complement Med 11:S57-S65
19. Waitzkin H (1991) The politics of medical encounters. Yale University Press, New Haven
20. White MA, Verhoef MJ (2005) Toward a patient-centred approach: Incorporating
principles of participatory action research into clinical studies. Integr Cancer Ther 4:21-24
21. Zebrack S (2000) Cancer survivors and quality of life: a critical review of the literature.
Oncol Nurs Forum 27:1395-401
20
Table 1 Breakdown of the supercategories of ‘concerns and problems’ stated on the first
MYCaW form
Supercategory (S) Breakdown of Supercategory
S1. Psychological and
Emotional Concerns
a. Adapting and coping
b. Body image concerns
c. Confidence issues
d. Depression
e. Emotional problems
f. Family and relationships
g. Fear and anxiety
h. Psychological issues
i. Regaining balance and normality
j. Sleep problems
k. Stress and tension
l. Support
m. The future
S2. Physical Concerns
a. Arm problems
b. Hot flushes and night sweats
c. Fertility
d. Pains / Aches
e. Physical problems
f. Poor energy levels
g. Recurrence and spread
S3. Hospital Cancer
(Medical) Treatment
Concerns
a. Cancer treatment in general
b. Lymphedema
c. Side effects of chemotherapy
d. Side effects of hormonal
treatment
S4. Concerns about
Wellbeing
a. Exercise
b. General wellbeing and mind/
body connection
c. Healing
d. Information and guidance on
complementary therapies
e. Nutrition
f. Relaxation
The categories were derived using independent content analysis of two data sets from Breast
Cancer Havens in London (n=268), Hereford (n=153) and from one data set at Penny Brohn
Cancer Care (n=361).
21
Table 2 Breakdown of the supercategories from the data regarding “other things affecting
your health”, stated on the follow-up MYCaW form
Supercategory (S) Breakdown of Supercategory
S1. Awareness of
Wellbeing
a. Taking exercise
b. Improved awareness of
own wellbeing
c. Improved nutrition
d. Difficulties in maintaining change
S2. Receiving
complementary therapies
a. Benefit of therapies at the
centre
b. Benefit of therapies outside of the
centre
S3. Major Life Events
a. Positive change of
environment
b. Negative change of
environment
c. Bereavement
S4. Social Support
a. Increased social support
b. General lack of support
c. Family problems
S5. Work Situation
a. Changed work set-up b. Work problems
S6. Health Issues
a. Cancer related and
positive
b. Cancer related and
negative
d. Non cancer related
S7. Other
The categories were derived using independent content analysis of two data sets from Breast
Cancer Havens in London (n=101), Hereford (n=69) and from one data set at Penny Brohn
Cancer Care (n= 237). Not every person felt the need to fill out this section which is reflected
in the numbers involved.
22
Table 3 The categories from the question ‘What are the important aspects of the centre you
have visited’, stated on the follow-up MYCaW form
1. Support and understanding
received
6. Being with other people with
cancer
2. Individual and group
therapies
7. Relaxation and time for ones
self
3. Access to therapies 8. The environment and
atmosphere
4. Confidence in the therapists 9. General appreciation of the
centre and its resources
5. Care and kindness 10. Negative feedback
The categories were derived using independent content analysis of two data sets from Breast
Cancer Havens in London (n=151), Hereford (n=86) and from one data set at Penny Brohn
Cancer Care (n=351). Not every person felt the need to fill out this section which is reflected
in the numbers involved.
23
Figure 1 The MYCaW tool – Follow-up form
24
Figure 2 An example of the coding inclusion criteria
b. Body Image Concerns – often breast cancer specific due breast surgery. Anything
with direct reference to body image, appearance or ‘looking’ different/better i.e.
acceptance of new body.
c. Confidence Issues – include direct references to confidence or self-confidence. If the
comment refers to confidence in the physical self then go to category S1b
25
Figure 3 Examples of ‘concerns or problems’ that patients wanted help with (stated on the
first MYCaW form)
.
Taken from Breast Cancer Haven data set:
Concern 1. Feelings of anxiety”
Concern 2. Stress and worry”
Concern 1. “To reduce my stress levels and I need a boost”
Concern 2. “Make sure my nutrition levels are OK, i.e. If there is anything I can do to
reduce my hot flushes”
Taken from Penny Brohn Cancer Care data set:
Concern 1. “Helping me to find ways of dealing with my dominant emotions of
anger and grief”
Concern 2. “Helping me to find ways of coping with my fear of the future”
Concern 1. “Pain control”
Concern 2. “Energy levels”
26
Figure 4 Examples of “other things affecting your health” (stated on the follow-up MYCaW
form)
Taken from Breast Cancer Haven data set:
“Other illnesses, Unemployment due to inability to be confident with lymphodema as a
major reason for being afraid to return to full time work.”
“Have decided to let more go and generally to slow down, accept that I am tired and not
to worry so much about what others think. I have a new enthusiasm for feeding myself and
family well and lots of new interests.”
“General support dealing with having problems, mentally I feel anxious and depressed
due to my operation, feel very depressed.”
“Keeping a family going (children and elderly father) inevitably take up time alongside
treatment, but are also important in keeping me strong.”
“I stopped eating all dairy products, which has made a quite improvement in my digestion
system. My mother has got terminal cancer and is dying any day - Her sister died already
(3 breast cancers between two sisters).”
“I reorganised my working hours in order to have an afternoon free each week.”
Taken from Penny Brohn Cancer Care data set:
“I have some anxiety regarding my parents who are both physically disabled and
becoming more frail - they are both at a point at which they need to decide whether to
move home (and nearer to us) but can't seem to reach a decision.”
“Stress and sadness due to recent divorce.”
“I have been having some financial problems, with 2 out of 3 bosses not paying me full
pay, national insurance contributions gone missing and can't get incapability benefit, car
accident, GP told me to get another GP.”
“Bereavement and family illness concerns.”
“I married my long term partner 2 weeks ago and we are expecting a grandchild in the
next week or so - both very happy events.”
27
Figure 5 Examples of “What has been most important for you?” (stated on the follow-up
MYCaW form)
Taken from Breast Cancer Haven data set:
“A wonderful calm place to be able to go to. The opportunity to try things that were new
to me. Such enjoyable and beneficial treatments. Information learnt and meeting other
people affected . Only place I learnt about food and diet for during treatment and
onwards.”
“Having someone that understands me more.”
“Getting the advice and support to help me to help myself i.e. feeling that I could do
things to promote my recovery/healing ( in small senses) rather than just feeling like an
NHS patient on the receiving end of medical treatment. So thank you Haven!”
“The mind body spirit therapy was a very powerful transition point. Following this my
healing has been accelerated with cranial therapy. I will soon be able to leave the Haven
and Marsden and walk on my own. "I bless the day I got breast cancer" now I am living"
Thank you"”
“Support help with nutrition and wellbeing, hope I can continue relying on it especially as
the medical after care is none existent.”
Taken from Penny Brohn Cancer Care data set:
“Meeting other people who are in similar situations and the incredible warmth and
supportiveness of all the "staff" who made it so much more possible to be positive and
optimistic about the future.”
“The most important aspects of my time at the Centre were the individual interviews with
practitioners. I have never had the chance to discuss myself holistically; to really stop and
consider all my needs, physically, mental and spiritual. THANK YOU FROM THE
BOTTOM OF MY HEART.”
“Impartial information and advice - holistic approach!! Having someone to check in with
re personal/medical path. Meeting other women with breast cancers - have kept in touch -
invaluable! Safe haven from the traditional medical realm - being able to relate to people
who speak the same language.”
“The most important aspect is the change in the way I think about myself and the
compassionate caring I had - I couldn't have made these changes without support and I
found the group work especially valuable.”
... We initially used the My Wellbeing and Concerns Assessment (MYCAW) (Polley et al., 2007) a six-point scale commonly used in complementary therapies to assess client outcome. ...
... We used two approaches to categorise topics. The first, using the themes associated with the use of MYCAW in patients using complementary therapies identified 4 major subthemes including psychological and emotional concerns, physical concerns, hospital cancer treatment concerns and concerns about wellbeing (Polley et al., 2007). ...
... Use of the same MYCAW coding scheme (Polley et al., 2007) with sample CROMS goals identified the 3 main categories of • adapting and coping • family and relationships • confidence ...
Presentation
Sharing the experience of developing a coaching service for cancer patients and their families
... We initially used the My Wellbeing and Concerns Assessment (MYCAW) (Polley et al., 2007) a six-point scale commonly used in complementary therapies to assess client outcome. ...
... We used two approaches to categorise topics. The first, using the themes associated with the use of MYCAW in patients using complementary therapies identified 4 major subthemes including psychological and emotional concerns, physical concerns, hospital cancer treatment concerns and concerns about wellbeing (Polley et al., 2007). ...
... Use of the same MYCAW coding scheme (Polley et al., 2007) with sample CROMS goals identified the 3 main categories of • adapting and coping • family and relationships • confidence ...
Conference Paper
Full-text available
Experience of setting up a coaching service for cancer patients and their families
... After screening the title, abstract, and keywords, we retrieved 34 articles in full text. We finally included 16 studies, evaluating four questionnaires (MYMOP and three adaptations: MYCaW, PSYCHLOPS, and MYMOP-P) [20,[30][31][32][33][34][35][36][37][38][39][40][41][42][43]. The new questionnaires were adapted for evaluation of therapies in cancer [42,43], psychiatry [31][32][33][34]37], and acupuncture [35,36]. ...
... We finally included 16 studies, evaluating four questionnaires (MYMOP and three adaptations: MYCaW, PSYCHLOPS, and MYMOP-P) [20,[30][31][32][33][34][35][36][37][38][39][40][41][42][43]. The new questionnaires were adapted for evaluation of therapies in cancer [42,43], psychiatry [31][32][33][34]37], and acupuncture [35,36]. Table 1 presents the general characteristics of these studies. ...
... MYCaW [42,43,45] was adapted from MYMOP to evaluate cancer patients undergoing integrative treatments ( Table 2). Like MYMOP, it allows patients to define and measure their two most important concerns and general wellbeing on a seven-point ordinal scale; higher score signifies poorer health [46]. ...
Article
Full-text available
Background Health-related quality of life (HRQL) is increasingly recognized for its importance in health research. As there is increasing recognition of the inter-individual difference in response to therapeutic interventions, it may be helpful to apply individualized measures of HRQL. The MYMOP is a commonly used example of such measures, although several adaptations have been developed. Objective This review was conducted to identify adaptations of MYMOP, and evaluate the measurement properties of MYMOP and its adaptations. Methods Adaptations were identified using MYMOP website and personal communication, supplemented by a SCOPUS search in April 2017. Bibliographies of included studies were hand-searched. COSMIN criteria were used to evaluate the measurement properties. Results Sixteen studies were included in this review. Adaptations were developed to evaluate individualized therapies in cancer, psychiatry, and acupuncture. The included measures were MYMOP, measure yourself concern and wellbeing, psychological outcome profiles (PSYCHLOPS), and MYMOP-pictorial (MYMOP-P). The quality of the measurement properties varied; none of the included measures met all currently recommended quality criteria for measurement properties. Conclusion Current literature provides evidence that MYMOP and its adaptations offer individualized assessment of patient-centered outcomes, and thereby provide a means to understand heterogeneity of treatment effects. However, current recommendations for psychometric testing suggest further validation of these measures would be beneficial.
... Integrative oncology (IO) as part of holistic supportive cancer care (SC) provides a powerful platform to meet the symptom control and holistic care needs of patients [11][12][13][14][15][16][17]. Over the last 15 years, the use of PROMs in integrative oncology has been established as standard of care in many leading centres, notably the Edmonton Symptom Assessment Scale (ESAS) [18][19][20][21]. ...
... Eighteen participants had been at the hospital for more than a year. Median interview length was 21 min (range [15][16][17][18][19][20][21][22][23][24][25][26][27][28][29][30][31][32][33]. ...
Article
Full-text available
Purpose Patient-reported outcome measures (PROMs) are useful clinical tools to recognise symptoms, patient needs and their severity. Whilst PROMs are routinely utilised in integrative oncology (IO) and supportive care (SC) services to improve patient care, they are not as common in general oncology. We explored our patients’ symptom burden, the approach taken by clinicians to identify and manage patient needs, and barriers and facilitators to using PROMs in an Australian tertiary comprehensive cancer centre to inform wider implementation of PROMs. Methods From 2017 to 2018, PROM data collected for patients accessing IO and SC was retrospectively analysed. Semi-structured interviews with oncology doctors and nurses explored their approach to patient needs assessment and their use of PROMs. Results A total of 404 patients completed the Edmonton Symptom Assessment Scale (ESAS). The most frequently identified symptoms were sleep disturbance, fatigue and lack of wellbeing. Symptom clusters included drowsiness, fatigue and shortness of breath; anxiety and depression; sleep and pain; appetite and nausea. In total, 9 nurse consultants, 5 surgeons, 7 medical and 5 radiation oncologists were interviewed. Most participants took an intuitive approach to identifying and managing patient needs and did not routinely use PROMs. Perceived risks, barriers and facilitators to using PROMS are presented. Conclusions High and complex symptom burden was found in our IO and SC patient population, reinforcing the need for screening. Whilst wider clinical use of PROMs within the hospital may improve clinical outcomes, the barriers and facilitators identified by Health Care Professionals (HCPs) need to be addressed before implementing PROMs more broadly.
... The qualitative data generated by the MYCAW was categorized according to 5 super-categories and subcategories. 26 All concerns were scored on a scale of 0 to 6. ...
Article
Full-text available
Background Patients with cancer are often impacted by a significant symptom burden. Cancer hospitals increasingly recognize the value of complementary and integrative therapies to support the management of cancer related symptoms. The aim of this study is to provide a better understanding of the demographic characteristics and symptoms experienced by cancer patients who access acupuncture services in a tertiary hospital in Australia. Methods A retrospective audit was conducted of patients that presented to the acupuncture service at Chris O’Brien Lifehouse between July 2017 and December 2018. Edmonton Symptom Assessment Scale (ESAS) and Measure Yourself Concerns and Wellbeing (MYCaW) outcome measures were used. The quantitative data was analyzed using descriptive statistics and Principal Component Analysis. Results A total of 127 inpatients and outpatients (mean age 55, range 19-85) were included with 441 individual surveys completed (264 ESAS, 177 MYCaW). Patients were predominantly female (76.8%) and breast cancer was the most prevalent primary diagnosis (48%). The most prevalent symptoms in the ESAS were sleep problems (88.6%), fatigue (88.3%), lack of wellbeing (88.1%), and memory difficulty (82.6%). Similarly, symptoms with the highest mean scores were numbness, fatigue, sleep problems and hot flushes, whilst neuropathy, and hot flashes were scored as the most severe (score ≥7) by patients. Cluster analysis yielded 3 symptom clusters, 2 included “physical symptoms” (pain, sleep problems, fatigue and numbness/neuropathy), and (nausea, appetite, general well-being), whilst the third included “psychological” symptoms (anxiety, depression, spiritual pain, financial distress). The most frequent concerns expressed by patients (MyCaW) seeking acupuncture were side effects of chemotherapy (24.6%) and pain (20.8%). Conclusion This audit highlights the most prevalent symptoms, the symptoms with the greatest burden and the types of patients that receive acupuncture services at an Australian tertiary hospital setting. The findings of this audit provide direction for future acupuncture practices and research in hospital settings.
... MYCaW responses were coded and described according to validated and published guidelines. [17][18][19] Qualitative feedback from MYCaW, internally developed questionnaires, and semi-structured interviews was pooled and assessed for common and unique themes. ...
Article
Full-text available
Background Lung cancer is the leading cause of cancer mortality in Canada, yet patients are often under-supported. A six-week program called Inspire Now, created to address unmet supportive care needs, was evaluated in this study. Feasibility and preliminary outcomes were assessed in order to inform future changes to the program. Objectives (1) Assess the feasibility of the program and its evaluation; (2) pilot the collection of patient-reported outcomes; (3) identify outcomes that may be positively influenced; and (4) inform program modifications. Methods Participants were recruited from the first session of Inspire Now for an observational pilot study. The primary outcome was feasibility. Secondary outcomes included within-person changes in Functional Assessment of Cancer Therapy – Lung (FACT-L) and Measure Yourself Concerns and Wellbeing (MYCaW), and program satisfaction and qualitative experiences of participants and facilitators through internally-developed questionnaires and semi-structured interviews. Analysis was primarily descriptive, within person changes in FACT-L and MYCaW were analyzed using the Wilcoxon signed-rank test and qualitative data was assessed for common themes. Results The program and its evaluation were feasible; 8 of 9 (89%) participants consented to the study, median attendance was 6 of 6 sessions (IQR 4.5-6), and questionnaire completion was 100% at baseline and 75% at follow-up. There were clinically meaningful improvements in MYCaW concern 1 (−1.2, 95% CI −2.0 to −0.4) and overall wellbeing (−0.9, 95% CI −2.1 to 0.4). Seven of eight FACT-L sub-sections trended toward improvement, with absolute changes ranging from −1.7 to 10.8%. Participant feedback was overwhelmingly positive; group support and social interactions were highly valued. Conclusions The group intervention for people with lung cancer was feasible to both run and evaluate. Participants responded positively to the program. Findings will inform changes to future sessions and an analysis of multiple sessions is planned.
... Although not used in this study, the Measure Yourself Concerns and Well-being (MYCAW) is another validated measure of patient concerns, unmet needs, and impact of therapy received. It has been applied in clinical practice particularly in the integrative oncology space [18], providing information to tailor supportive care to individual needs and to improve and monitor wellbeing [30,31]. The coupling of patient reported outcomes to the CTCAE is not only acceptable but also may improve patient care by facilitating communication between patients and healthcare providers to discuss strategies to address symptoms of concern [32]. ...
Article
Full-text available
Introduction Increasing numbers of metastatic melanoma (MM) patients are receiving immunotherapy treatment, including pembrolizumab, and the impact on their well-being is underexplored. Objectives To assess the feasibility of a multimodal supportive care program to MM patients being treated with pembrolizumab. Methods This pre-post-test feasibility cohort study recruited MM participants treated with pembrolizumab: (i) supportive care intervention with usual care and (ii) usual care. The intervention comprised comprehensive medical assessment by supportive care physician (SCP), exercise physiologist (EP), and dietitian then a tailored supportive care program. Programs included exercise, dietary advice, non-invasive complementary therapies, and psychology consultation. Outcome measures included adherence, patient-reported symptoms, anxiety and depression, and toxicity. Descriptive data are reported. Results We recruited 28 participants: 13 intervention and 15 control; three did not complete the study. Most were male, with median age 66 (range 42–85) years. All intervention participants completed baseline assessments with SCP, EP, and dietitian. Two missed follow-up with EP or dietitian. Symptoms most troubling at baseline were as follows: fatigue (n = 6), sleep (n = 6), general aches and pains (n = 5), and memory (n = 4). All intervention participants were prescribed 16 exercise sessions; 8 (50%) completed all; overall exercise adherence was 85%. Integrative therapies were accessed by 85% (11) participants. Immunotherapy-related adverse event rates were low and SCP consultation identified symptoms not captured by CTCAE 4.0. Conclusions A holistic supportive care intervention tailored to individual needs is feasible. The symptom burden in MM patients was low. Further investigation of the intervention is warranted, focused on populations with higher symptom burden to improve outcomes.
Article
Introduction: Existing patient reported outcome measures (PROMs) do not capture all holistic outcomes observed in Traditional, Complementary and Integrative Medicine (TCIM). This study reports development and validation of a PROM to support research on craniosacral therapy (CST) and other TCIMs. Methods: Using a conceptual framework and items developed and evaluated with clients and practitioners in a CST setting, a questionnaire was developed and tested using mixed methods approaches. Evaluation included an iterative process. Psychometric tests: structural validity (exploratory factor analysis, EFA), internal consistency (Cronbach's alpha), convergent validity (correlations with Warwick-Edinburgh Mental Wellbeing Scale, Short Form-12v2 (SF-12), Harry Edwards Healing Impact Questionnaire), repeatability and responsiveness (t-tests; intra class coefficients, ICC). Results: The Warwick Holistic Health Questionnaire (WHHQ-18) was resolved covering mental, physical, emotional and spiritual wellbeing, self-awareness, engaging in life, responsibility for self, living in the moment and satisfaction with life. EFA revealed four correlated sub-scales. Internal reliability was good (alpha=0.852). Convergent validity showed strong positive correlation with other wellbeing measures, but no correlation with health-related quality of life (SF-12). Repeatability testing showed good agreement (ICC=0.822) and no differences in scores for test-retest (paired t-test: t=0.355, p=0.723). Responsiveness analysis showed significant differences in scores (paired t-test t=6.15, p<0.001) with 46% of participants having an effect size of 0.5 or more. Conclusion: WHHQ-18 is the first PROM developed for CST practice and captures outcomes important to TCIM more broadly. Good internal consistency, test-retest reliability and responsive at individual and group level make this new PROM an attractive resource for evaluators. Lack of convergent validity with SF-12 scales suggests WHHQ-18 be added to rather than replace HRQol measures in clinical studies.
Article
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Assessing inter-rater reliability, whereby data are independently coded and the codings compared for agreements, is a recognised process in quantitative research. However, its applicability to qualitative research is less clear: should researchers be expected to identify the same codes or themes in a transcript or should they be expected to produce different accounts? Some qualitative researchers argue that assessing inter-rater reliability is an important method for ensuring rigour, others that it is unimportant; and yet it has never been formally examined in an empirical qualitative study. Accordingly, to explore the degree of inter-rater reliability that might be expected, six researchers were asked to identify themes in the same focus group transcript. The results showed close agreement on the basic themes but each analyst `packaged' the themes differently.
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Complementary and alternative medicine (CAM) is growing in popularity and consumes increasing amounts of resources. Economic evaluations such as cost-effectiveness analyses (CEAs) are intended to inform decision-makers about the relative efficiency of different interventions, including CAM. To be generalizable, economic evaluations should use the same metric to assess health benefits--e.g. quality-adjusted life years (QALYs). However, the recurrent conditions for which CAM is typically used suggest that the health benefits of CAM will manifest themselves primarily as quality-of-life improvements that appear in CEA as 'utilities' attached to health states. Therefore, appropriate utility measures will be critical to the production of valid CEAs of CAM therapies. Some economists assert that the process of health care, as well as its outcome, can contribute to patient utility. This essay argues that process utility is especially relevant to CAM; accurate assessment of process utility will be important to valid economic evaluations of CAM; existing utility assessment methods do not directly account for process utility; and, therefore, techniques such as qualitative analysis that can inform more appropriate and complete assessments of the benefits of CAM should be explored. The heterogeneity of CAM modalities suggests that the arguments made in this essay will apply with similar force to economic evaluation of conventional therapies with which CAM is likely to be compared.