Tuesday 12th June 2012
Sandra White, Nurse Consultant, discusses the development, evaluation and sustainability of a 12-week cancer rehabilitation programme in Scotland.
Cancer rehabilitation can be defined as ‘a dynamic, ongoing health-orientated process, designed to promote maximum levels of functioning in individuals with cancer related health problems, and is an ethical commitment by cancer care providers’. It can therefore be said that the aim of cancer rehabilitation is to improve quality of life and promote independence, thereby reducing dependency on healthcare services regardless of prognosis. With this in mind, it should be considered an integral part of cancer care.
Current cancer rehabilitation programmes have been shown to have a positive effect on physical functioning, active daily living, shoulder movement, cardiovascular fitness, mood and quality-of-life. No adverse events have been reported.
The local picture
Cancer Scenarios: An aid to planning cancer services in the next decade provides a foundation for forward planning cancer care in Scotland until 201 . Its model projects a continuing downward trend in mortality over the period, but also an inexorable increase in the incidence of cancer, with an estimated total of 33,000 new cases each year by 2015.
Prior to 2008, rehabilitation programmes in NHS Ayrshire and Arran were well-established for chronic conditions such as cardiac disease, osteoporosis, chronic obstructive pulmonary disease, and diabetes, but these had not been extended to other patient groups, including those with cancer.
In 2008, a community-based cancer rehabilitation programme for people in NHS Ayrshire and Arran was proposed. The aim was to help people with cancer improve their function and psychological wellbeing during and/or after cancer treatment. It would link with existing community rehabilitation services, but have specific components tailored for people with cancer. The lead cancer clinician and nurse consultant for cancer presented a paper to the Scottish Government and obtained funding. This was used to commission the pilot programme and its evaluation, support a physiotherapist, and train health development officers from local councils.
Patient and public consultation was carried out through the Macmillan patient and public involvement officer (cancer) and gathered directly from people who were attending or had recently completed cancer treatment. Feedback was incorporated into the pilot programme. Following discussion with the Research and Development Department, it was decided that ethical approval was not required to evaluate the programme as it was seen as a service development.
A steering group was formed and chaired by the nurse consultant. It met for a period of three months to plan the programme. The primary aim of the programme was to test:
- the feasibility and format of recruitment uptake
- participants’ adherence to the programme
- the physical and psychological benefits to those participating.
An additional aim was to provide a cost neutral service by linking with existing community rehabilitation provision. Many NHS and voluntary sector staff supported the programme within their current remit, which significantly cut down the overall running cost of the programme.
Dr Anna Campbell, Research Fellow at the University of Stirling’s Cancer Care Research Centre, was commissioned to evaluate the programme and provide cancer-specific exercise training to the health development officers and a physiotherapist.
A two-day workshop for 14 health development officers from North, East and South Ayrshire councils was run by Dr Campbell in June 2008. This workshop included a general overview of:
- cancer, its treatments and side effects
- the benefits of physical activity during and after cancer treatment
- current guidelines and contraindications
- practical examples of exercise and class formats for people with cancer
- behaviour change research in cancer survivors.
An exam was taken and passed by all participants, which ensured that they grasped the benefits of exercise-based cancer rehabilitation before the pilot programme began. Health development officers were also required to run at least two classes before receiving a certificate for the workshop.
A four-week recruitment period began in July 2008. Posters were displayed in healthcare areas across NHS Ayrshire and Arran, and information was sent to clinical nurse specialists, GPs, local voluntary sectors, consultants involved in cancer services, clinical nurse managers, ward managers from oncology areas, and the regional cancer centre. All documentation was channelled through the nurse consultant’s office. Most of the participants were recruited by clinical nurse specialists, oncologists and the voluntary sector.
The programme was open to anyone with cancer, with any cancer type, as long as they had been treated within the last 12 months. People were only excluded if they had uncontrolled cardiac disease/hypertensive disease, or last received treatment for cancer over 12 months ago. All concurrent, major health problems were recorded on the referral form by the recruiter.
During the recruitment period, we recorded that 59 patients were made aware of the programme and of those, 30 agreed to take part.
Information on those who consented and attended
Seven men and 23 women agreed to participate in the programme. However, 11 did not attend any of the cancer rehabilitation classes. The average age of those attending was 60 (range from 46–86) and included people with a variety of cancer types:
- breast cancer (9 participants)
- myleoma (1)
- colorectal (2)
- ovarian (1)
- lung (2)
- non Hodgkin Lymphoma (1)
Six participants had completed active treatment before the programme; 10 were on active treatment (mostly chemotherapy) during the programme; and three were on palliative care treatments.
Three participants attended the first class but did not return. The average attendance rate was 73% for the 16 participants who returned after the first session. One woman died after attending the first four weeks of the programme.
12 out of the 16 participants attended the last session providing data on pre and post-programme outcomes. The results opposite show the mean, standard deviation and average change (and range of change) after the 12-week programme for each outcome.
The programme ran for two hours a week from August to November 2008. Carers were welcome to attend. The programme included educational talks from a variety of professionals including a dietitian, a psychologist, cancer nurse specialists, allied health professionals and information and support professionals.
- managing side effects of treatment
- managing fatigue/coping with tiredness
- benefits awareness and financial issues
- nutritional issues
- positive psychology
- finding meaning in illness
- body image
- support in the community
- how to navigate the health system.
Following the talks, the physiotherapist and health development officers ran a tai chi class, followed by guided relaxation. The topics covered in the programme were identified through the patient consultation mentioned earlier, and mirrored current research findings. A space in a community hospital was used in the north of Ayrshire to reduce costs. Transport wasn’t offered to participants as a self-management approach was favoured by the steering group.
Week 1 and week 12
On the first day, the participants’ physical ability was assessed by the physiotherapist through sit to stand repetitions. Participants were also timed walking a certain distance. This was repeated at week six and week 12. Results were monitored and any abnormality was addressed. Validated tools included:
- Distress Thermometer
- FACT-G – Quality of Life (QoL) (General)
- FACT-F – Quality of Life (Fatigue)
- Self-efficacy for specific exercise tasks
- Self-efficacy for exercise despite barriers
- HADS – Anxiety subscale
- HADS – Depression subscale.
The programme commenced with an introduction to the team and the programme, participants’ expectations and sharing of experiences. This was followed by the assessments mentioned above and tea. Time was given to allow participants to get to know the team and each other. A 30-minute talk was given followed by time for discussion, an exercise session and relaxation. Diaries were also given out so that the participants could record their daily activity.
Subsequent weeks followed the same pattern apart from week six when the Distress Thermometer and the HADS were completed. Week 12 mirrored week 1.
The exercise component of the programme lasted approximately 15 minutes at the beginning and was gradually extended to 40 minutes.
Feedback from participants
Participants were asked to rate aspects of the programme through a questionnaire. The overall average rating for the programme was 9.2 out 10 (1 being ‘very disappointed’ and 10 being ‘very pleased’). 90% of participants felt their fitness level had improved.
Analysis of outcomes
Week 12-week 1 (range)
Decrease in distress of 1.5 units (-9 to +7)
FACT-G - Quality of Life (QoL) (General)
Increase in general QoL of 6 units (-5 to +15)*
FACT-F - Quality of Life (Fatigue)
Increase in QoL (fatigue related) of 3.1 (-20 to +21)**
Distance walked in 6 minutes
Increase by 4.6 hall lengths (-18 to +12)
Sit to stand repetitions
Increase by 2.2 reps (-14 to +11)
Self-efficacy for specific exercise tasks
Increase by 17% (-15% to +50%)
Self-efficacy for specific exercise despite barriers
Increase by 11% (-6% to +63%)
HADS – Anxiety subscale
Decrease by 1.5 (+3 to -7)
HADS – Depression subscale
No change (+4 to -4)
* Some 12 week questionnaires incomplete
** Clinically significant difference
- ‘Put benefits talk earlier on in the programme’
- ‘When we sat closer in the circle it was more relaxed and we could hear better for the talks. Felt it was maybe a little bit too long in the first two weeks – felt better once we were more familiar with the programme’
- ‘Possibly more on alternative medicine’.
Reasons for not attending any classes
- ‘Was very ill with chemo and could not walk to the hospital and unable to drive’
- ‘Only scans prevented 100% attendance’
- ‘Illness, hospital tests and appointments’
- ‘Chemo, radiotherapy appointments and Hickman line removal op’.
What do you intend to do to keep up your rehabilitation programme?
- ‘Wait til you start up again’
- ‘Do the exercises and keep up the positivity’
- ‘Keep up regular exercise indoors and walking outdoors’.
All participants were interested in participating in another programme.
Feedback from health professionals
Ten forms were received from referring health professionals. Their comments included:
- 'Very positive feedback, presentations well-evaluated and exercise manageable and enjoyable’
- ‘Well-valued and everyone had enjoyed the exercise as well as the social aspect’
- ‘One patient commented on the name – didn’t like the word cancer being used’
- ‘One patient felt the programme was more suited to patients undergoing treatment’
- ‘One patient found it difficult to attend regularly during chemotherapy treatment’.
Views of the referral process
- ‘Form quite lengthy’
- 'Referral process seems to be clear and should be effective’
- ‘Too limited numbers to comment, but seemed a bit haphazard, I was offering to patients when programme already was full so wasn’t working particularly well’
- ‘Patient referred and very keen to participate but was refused entry because she was going on to have radiotherapy. Recruitment plan states that patients can attend when they are undergoing radiotherapy’
How do you value the content of the programme?
- ‘I feel that the exercise component is very important as research has shown it will improve survival’
- ‘Very comprehensive and covers wide range of topics’
- ‘The contents more appropriate for patients undergoing treatment’
- ‘Excellent combination of exercise and educational information given’.
All 10 referring professionals were invited to attend the classes. Of these, only four attended as most said they were unaware that this was an option. Three said they may attend a class in future.
Feedback from health development officers
All health development officers said that the training was informative, educational and interesting. One commented that it ‘furthered my interests, was relevant to my job, excellent, made me more aware of the varying side effects of cancer, and more confident to prescribe exercise to someone with cancer.’
Most health development officers ran at least two tai chi classes, while everyone indicated that they would like to have heard all the speakers and would like refresher training now and again as the guidelines are constantly evolving. The format of the class was approved by most of the staff and a circuit class was suggested as a potential component to enable those of differing abilities to work together.
None of the health development officers were able to commit to taking the next programme for the full 12 weeks due to constraints with work commitments. Some stated that they would be interested but it would be at the discretion of their line managers. Two had already referred some patients to their own classes at the end of the programme.
Recruitment numbers and procedure
Only 59 patients were approached about the rehabilitation programme during the four-week recruitment period. Assuming that around 42 patients are diagnosed daily with cancer in Ayrshire and Arran, the number of patients told about the study appears to be very low. Reasons may include: more people may have been approached but this was not noted; the numbers coming through Ayr and Crosshouse Hospitals were lower than predicted; or selective recruitment is occurring.
Of the 30 who consented, 16 attended the programme. Future recruitment therefore should assume a 50% dropout rate. No major socio-demographic differences were obtained from the referral forms between those who attended and those who refused or did not attend. Fewer men than women appear to have been approached. No men with prostate cancer were included in the study.
Women with breast cancer were the most likely to be recruited and attend.
It is unclear whether this programme is best suited to those during treatment or after treatment, or if it should be left up to the patient to decide.
Benefits of the programme
From the pre and post assessments, it is clear that most participants benefited physically and psychologically from the programme. The perceived levels of distress and anxiety decreased and their overall quality of life andlevels of fatigue improved. Physical functioning – both aerobic and muscular – increased, and their motivation to continue being active despite barriers was significantly higher. This is re-enforced by the views of the participants.
Conclusions and action points
The following recommendations were made after the pilot:
- A smaller, more intimate venue accessible by public transport would be more suitable.
- Assign one or two health development officers/physiotherapists to attend all classes to maintain the standard and progression of the exercise component and develop familiarity with participants.
- Have a dedicated member of staff whose clinical role is provide appropriate recruitment procedure and forms; to manage monitoring and data of all participants before, during and after programme.
- Recruit more patients and carers to compensate for the expected drop out.
- Widen or narrow eligibility to the programme (see next page).
- Train all staff assisting with baseline and 12 week questionnaires and exercise tests to ensure all forms are completed properly and the exercise testing is standardised.
- Ensure effective monitoring of participants during the programme, and that appropriate action is taken when the data is collected and analysed (eg referral to relevant health professional).
- Ensure a smooth transition at the end of the programme to the relevant community-based venue and exercise class.
- Look at cost/benefit of the programme in more detail.
Outcomes of these recommendations
A smaller, centrally-located venue nearer to public transport is now in place.
- We were not able to assign any more health development officers/physiotherapists due to the financial climate, however, physiotherapy and health development staff felt that this is not needed.
- Dedicated secretarial support is now in place to manage the running of the programme.
- Recruitment has expanded, mainly due to word of mouth as professionals and patients have confidence in the programme.
- All professional staff are able to assist with baseline data collection and assist with the walking section of the exercise component.
- All patient assessment is monitored and appropriate referrals followed up.
- We have had limited success with referral to community-based leisure programmes due to difference in policy across Ayrshire and Arran.
- Repeat evaluation is yet to be completed but we are currently looking to funding bodies to support this.
2012 – where we are now
The programme is now in its eighth round. It historically ran twice a year, but due to patient and staff demand, it is now running three times.
On average,18 patients attend each programme. We now accept people who last received treatment up 24 months before starting the programme at the request of clinical staff. The venues have also changed from a range of community health centres to local churches. To date, there hasn’t been any problem with the different cancer types or stages of disease within the patient groups. All groups have bonded and supported each other very well and many of them still meet up.
The professionals that run the programme enjoy it and have great respect for the participants.
There is no dedicated funding for the programme, however, the service director for physiotherapy has supported the programme and only now due to financial pressures is unable to continue to do so. We secured funding for a physiotherapist but we now have a retired member of the health development team, who is trained in cancer rehabilitation, to support the exercise component. This is working very well.
Due to cuts within local council leisure departments all support was stopped a few years ago, but this did not stop the programme thankfully. It does however reduce the links to council leisure services. We can refer patients through a paper referral process, but this is not quite the same as having them there.
Staff that incorporated the programme into their current post continue to do so and the remaining resource is funded from cancer budgets within NHS Ayrshire and Arran.
This programme has only been made possible due to the dedication of all staff that run and support the programme – at times over and beyond the call of duty.
See References - Sharing Good Practice - Summer 2012.
Contact Sandra White, Macmillan Nurse Consultant at Ayr and Crosshouse Hospitals, NHS Ayrshire and Arran on 0156 382 6024 or email Sandra.
About the author
Sandra is a nurse consultant in cancer and is currently implementing support services to sit alongside the cancer rehabilitation programme. The main aim is to deliver a 'health and well-being support model of enablement' regardless of type or stage of disease. Sandra also sits on the Scottish Government Transforming Care Group and on the National Nurse Consultants Group for cancer and palliative care.
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