Results of our Evaluations
Positive Care Programme 2005-2007

I think it is a really fantastic project that helps people with all aspects of their lives. The therapies and workshops are really inspiring and everybody is so friendly and positive. It was a lifeline to me at a really difficult time in my life, and has definitely helped with my recovery. It would be great if it could be extended to help people all over the country
(A Participant)

What is the Positive Care Programme?

The Positive Care Programme (Registered Charity Number: 1112401) is a 30 week course (24 weeks in year one and 6 weeks follow-up in the subsequent year) of complementary therapies and motivational workshops for people over the age of 18 years, who have long-term illness and carers. It is based on the principle that people are made up of body, mind and spirit and all these need attention for wellbeing.

Our Evaluations
The following is a combined summary of the evaluations of the Positive Care Programme 2005 to 2006 and that of 2006 to 2007. In these two years:

Participants

• 97 people (73, 75%) women; 24, 25%) men) enrolled onto the programmes. Of these:
• 80 people were aged 16-64 and 17 were aged 65+
• Approximately 80% were people with long-term illness and 20% classed themselves as carers (but many of these also had long-term illnesses themselves)
• The majority of participants had mental health problems. Of these, over 60% had both physical and mental health problems; only a few had physical problems only.
• Ethnicity was as follows: White British – 57 (59%), White Irish - 2, White Other - 8, Black Caribbean – 10, Black African - 1, Black Other - 1, Asian Indian – 14, Asian Pakistani - 1, Asian Bangladeshi - 1, Other Asian background - 1, Mixed ethnic background (White and Black Caribbean) - 1

‘I think this has been very beneficial to my general health and wellbeing….It’s excellent!! I’ve started to laugh again. It’s helped me get out the house more. As I had become agoraphobic and my anxiety was getting worse. This is not as bad now… and I have taken charge with some of my life as I have stopped smoking for 4 weeks.….I have noticed a great improvement in my memory, confidence and happiness (I’m not crying as much). Thank you’.
(A participant)

About the Evaluation Measures

We asked participants to complete health-related quality of life questionnaires (HRQOL) when they started the programme, and again following 24 weeks after enrolment, to record change. The questionnaires used were:

a) COOP/ WONCA1 measure of functional status, which records the following topics as visual charts (physical fitness, feelings, daily activities, social activities, changes in health, overall health). This scale is particularly useful in a multi-ethnic environment as it does not rely solely on language to convey meaning, but also uses visual pictures and matchstick figures.

b) MYCAW2 (Measure Yourself Concerns and Wellbeing) is an individualised outcome tool which gives the participant a voice in assessing the impact of their care. This records patient identified problems which might not be addressed by a generic HRQOL tool. E.g ‘itchy scalp’, ‘lacking meaning in life’.

c) In addition we used a questionnaire (‘You and Your Project’), specifically designed to ask participants about the components of the programme, so that we could identify which parts they found most and least beneficial.

Results after 24 weeks (the first year of the programme)

We do not expect people to attend every session over the 24 weeks and therefore we consider attendance between 12 and 24 times to be full attendance.

• 18.5% (18/97) only attended 1-3 times
• 22.5% (22/97) attended between 4 and 11 times
• 59% (57/97) attended between 12 and 24 times (‘full’ attendance)

We had estimated that one third of participants would hardly attend at all, one third, for half the expected time and a third would fully attend. The fact that many more people attended than expected is very pleasing.
After approximately 24 weeks of the programme, we asked participants to complete the two HRQOL questionnaires again. There was a 95% follow-up rate (92/97).

COOP-WONCA Results

These results represent improvements in general mental, physical and social health.

The best possible individual score = 6 and the worst possible individual score = 30
Taking all participants, irrespective of attendance (This gives a very conservative result):

• Mean baseline score = 20.1 (97 participants)
• Mean follow-up score = 17.5 (92 participants)

Thus overall, mean scores improved to a highly statistically significant level (t=5.5 p<0.001) at the end of the first 24 weeks of the programme.
The domains of highest improvement were:

1. ‘Changes in health’
2. ‘Social activities’
3. ‘Overall health’

MYCAW Results

The MYCAW results represent improvements in the concerns which participants stated were the ones with which they would most like to have help.

The best possible individual mean score = 0 and the worst possible individual mean score = 6
Taking all participants, irrespective of attendance (Again, this gives a very conservative result):

• Mean baseline score = 4.6 (97 participants)
• Mean follow-up score = 3.2 (92 participants)

Thus overall, mean scores also improved to a highly statistically significant level (t=9.54 p<0.001) at the end of the first year and the largest improvement was in the group which attended fully (a mean score of 3). Those who attended between 4 and 11 times improved to a lesser extent (a mean score of 4) and those who only attended 1-3 times had scores which were similar to those of when they enrolled (a mean score of 4.5).

Being on the PCP has helped me to accept and cope with my condition better, which has improved my confidence and outlook on life
(A participant)

Results after 30 weeks (the second year of the programme)

In the second year of the programme, participants are invited back for 6 weeks during the year. The results of the health related quality of life questionnaires for the people who enrolled in 2005 and who have now completed the whole programme are as follows:

COOP-WONCA Results

The best possible individual score = 6 and the worst possible individual score = 30
Taking all participants, irrespective of attendance (Giving a very conservative result):

• Mean baseline score = 20.8 (46 participants)
• Mean year 1 follow-up score = 16.1 (45 participants, 98% follow-up rate)
• Mean year 2 follow-up score = 17.5 (42 participants, 91% follow-up rate)

This demonstrates that improvements in general mental, physical and social health have continued over the two years since people were first enrolled onto the programme, to a highly statistically significant level (t=4.0 p<0.001). This indicates that the Positive Care Programme appears to have long-term benefit.

MYCAW Results

The best possible individual mean score = 0 and the worst possible individual mean score = 6
Taking all participants, irrespective of attendance (This gives a very conservative result):

• Mean baseline score = 4.6 (46 participants)
• Mean year 1 follow-up score = 3 (45 participants, 98% follow-up rate)
• Mean year 2 follow-up score = 3.3 (39 participants, 85% follow-up rate)

These results demonstrate continued improvements in the concerns which participants stated were the ones with which they would most like to have help, over the two years since people were first enrolled onto the programme. Again, these results are highly statistically significant (t=4.9 p<0.001) and indicate that the Positive Care Programme appears to have long-term benefit.

I felt the course has been valuable to me in many ways and have felt privileged to take part in the course
(A participant)

You and Your Project Questionnaire

Fifty eight participants who had attended sufficient times to enable them to evaluate the effectiveness of the programme completed this questionnaire.
The table below outlines how participants viewed the programme:

Numbers of participants (n =58) who agreed or strongly agreed that PCP had helped to:

Number of visits to GP

Participants were asked, how often they now needed to visit their GP and was this less often / more often / the same as before they started the Positive Care Programme?
37% (21/57) said that they visited less often, 53% (30/57) the same, 5% (3/57) more often and 5% (3/57) not stated or unclear.

Reduction in Medication?

This was not encouraged in the programme (and indeed, not expected as many participants required on-going medication e.g. to control diabetes), but the question was asked out of interest. Considering that participants had long-term illnesses, we were pleased that 30% were able to reduce their medication (mainly painkillers, antidepressants, sleeping tablets and anti-inflammatory medication).

Participants were asked, ‘Have you been able to able to reduce the amount of medication which you take?’

• 30% (13/43*) said Yes
• 2% (1/43) temporarily only
• 67.5% (29/43) said No

*[Not included were: 13 - who were not taking medication and 2 - who did not answer this question]

This is a great workshop which the GP practices / NHS should adopt; a lot more people would benefit from all you’ve offered
(A participant)

‘My general wellbeing has improved this winter - I’m far less stressed and depressed, less frustrated too. Thanks!’
(A Participant)

Numbers in the study are relatively small and the results can only be said to be suggestive, nevertheless, both quantitatively and qualitatively, for the second year running, we have demonstrated that the Positive Care Programme benefits the participant’s wellbeing.

References

1. Beaufait, D. W. et al. Research Methods for Primary Care. 1992;2:151-167
2. Paterson, C. et al Complementary Therapies in Medicine 2007;15:38-45

Thanks

We would like to thank all the participants of the Positive Care Programme who completed the evaluation forms. Their contributions are much appreciated.
Also thanks go to Philip McShane, Medical Statistician of the Clinical Trials Research Unit, University of Leeds, who performed the statistical analysis.