Information Resources Evaluation - Headline final results for Macmillan Cancer Support July2013

Introduction Who responded to the survey / feedback forms? Who has fed back on which format of information? How do information needs change over time? Who benefits the most from which information? What happens after reading the information? How do benefits change over time? Content-specific findings Summary of findings Next steps – Areas for particular investigation – Follow-up offers received – Project elements Contents Introduction

The Information Resources Evaluation focuses on the following booklets and web pages: – Cancer-specific Breast cancer Colon cancer Lung cancer (Early localised) prostate cancer – Generic Benefits and financial help / Help with the cost of cancer Chemotherapy Fatigue This report provides the findings from: – 672 survey respondents (452 online survey and 220 paper feedback forms), collected between 8 Jan and 6 Jun 2013 – XX telephone interviewees, conducted between XX and XX 2013 – XX in-depth interviewees (two face to face, and XX telephone), conducted between 29 May and XX 2013 For this headline report, outcome ratings are aggregated in most cases The number of respondents (n) is shown where appropriate. Although the demographic spread of responses is good, some questions have relatively low responses rates and this should be taken into account when interpreting the results Methodology Introduction

Who has been involved in this evaluation?

Breast cancer information has generated the most responses overall (almost a quarter) There has been a good spread of respondent’s status: 53% of respondents are living with/beyond cancer; 35% are family, friends and carers; 5% are professionals Women make up over two thirds of all respondents Almost 80% of all respondents are over 45 90% of all respondents areWhite. There is too little variation for detailed analysis by ethnic group at this stage Findings Who has been involved in this evaluation? Update

Respondents’ status Who has been involved in this evaluation? n = 653 (respondents were able to choose more than one situation) and 59 Just over half of respondents (59%) are people who are living with/beyond cancer Telephone interviews Survey

Topic Who has been involved in this evaluation? n = 672 Breast cancer information has generated the most survey responses (23%) Survey Telephone interviews

Topic and format Who has been involved in this evaluation? Responses are broadly representative of distribution and unique online visit monitoring Type Booklet distribution rank Booklet respondents rank Unique visits rank Online respondents rank Benefits and financial helpGeneric1257 FatigueGeneric2176 ChemotherapyGeneric3315 Lung cancerCancer-specific4643 Colon cancerCancer-specific5634 Breast cancerCancer-specific6421 Prostate cancerCancer-specific7562

Age and gender Who has been involved in this evaluation? 79% of respondents are over 45; 67% are female Age groupMaleFemaleTOTAL Under to to to Over Prefer not to say 33 TOTAL n = 648 and 59 Telephone interviews Survey Age groupMaleFemaleTOTAL Under to to to Over Prefer not to say 000 TOTAL213758

n = 653 Ethnic groups Who has been involved in this evaluation? 84% of survey respondents were White British Survey

10 interviews: In-depth interviews Who has been involved in this evaluation? Update

Who responded to which format of information?

Booklets responses were mostly about generic information (rather than cancer-specific) Respondents who look after someone with cancer have been more likely to provide feedback on booklets (as opposed to online information) than other respondents Carers and people undergoing treatment have been more likely to feedback on generic information Respondents from older age groups have been more likely to feedback on online information* Respondents from older age groups have been more likely to respond to cancer-specific information* There are only slight differences between genders in terms of format and topics fed back on * This may be reflecting preferred method of providing feedback rather than preferred means of accessing information, and so requires further investigation Findings Who has fed back on which format of information? Update

Format, by topic Who responded to which format of information? n = 208 Responses relating to booklets were primarily about generic information (77%) rather than cancer-specific (23%) Survey

The mix of booklet and online responses was similar across genders The mix of generic and cancer-specific information was similar across genders There was no indication of older respondents being put off by answering an online survey (over half of responses from Over 65’s were via the online survey) Other findings Who responded to which format of information?

What happens after reading the information? – Next steps

One out of five respondents apply for benefits soon after reading information on benefits and financial help, and 40% intend to do so in future Females are more likely to recommend information than men (8% more) The 26 to 45 age group are most likely to recommend information Early indications are that respondents are more likely to recommend booklets than online information Findings What happens after reading the information? Update

Actions taken / intended (Benefits & financial only) What happens after reading the information? n = 70 survey (only five of these were health professionals); 7 telephone interviews. * Low base number 26% of respondents apply for benefits soon after reading information on benefits and financial help; 40% intend to Action Already taken this action Now intend to take this actionTOTAL 35 to 96 days after survey* Contact a welfare rights adviser/benefits adviser 41%40%81%71% Contact the Macmillan Support Line 44%26%70%57% Apply for a Macmillan Grant 19%29%47%14% See a health or social care professional for more information 21%37%59%n/a Apply for benefits and/or financial support 26%40%66%57%

Likeliness to recommend, by age and gender What happens after reading the information? n shown in brackets Older males are less likely to recommend information, especially online information Survey

n = 612 (showing ethnic groups with 10 or more respondents) Likeliness to recommend, by ethnic group What happens after reading the information? White European and White Other respondents are less likely to recommend information Survey

What happens after reading the information? - Outcomes

In general, the information (booklet and online combined) has the biggest immediate impact on enabling PABC to have a better understanding of the topic or condition. Booklets generally have a bigger immediate impact on PABC than online information (4% to 39% higher) Level of immediate impact is similar across respondent types (e.g. living with cancer, friends/family/carers) Female respondents are more likely to say they know what to do next after reading the information compared to male respondents Level of immediate impact are broadly similar across age groups* * The under 16s age group has too few responses to be robust, so requires further investigation Findings Who benefits the most from which type of information? Update

By topic – Generic Who benefits the most from which information? n varies Online info provides less benefit relative to booklets (Fatigue online info in particular) Survey

By topic – Cancer-specific Who benefits the most from which information? n varies Online info provides less benefit relative to booklets (Lung cancer online info in particular) Survey

By format of information Who benefits the most from which information? n varies ‘Better understanding’ is the biggest immediate impact; feeling less anxious is lowest OutcomeBooklet (paper) Online info (online) Difference (booklet –v- online) Have information needed % Have better understanding % Feel less anxious % Feel more in control % Feel better able to make decisions % Know what to do next % Average of averages (aggregated) Survey

Outcomes measured in survey Who benefits the most from which information? Information provides relatively lower benefits in terms of feelings Survey

Outcomes measured in telephone interviews Who benefits the most from which information? n shown in brackets. * These were only asked of respondents based on situation Mental and physical wellbeing are less influenced by information resources, particularly latter Telephone interviews

All outcomes, over time Who benefits the most from which information? CategoryOutcomeAt time of survey Two to three months after survey Next stepsKnow what to do next FeelingsFeel less anxious Knowledge & understandingHave better understanding4.3 FeelingsFeel more confident 4.3 CommunicationBetter able to communicate with PABC*4.3 Next stepsFeel better able to make decisions Knowledge & understandingHave information needed4.1 CommunicationBetter able to communicate with your health / social care prof'l(s)* 4.1 FeelingsFeel more in control FeelingsFeel less alone 3.9 WellbeingMental / emotional wellbeing improved3.9 WellbeingPhysical wellbeing has improved3.0

All outcomes, over time Who benefits the most from which information? In order of highest average rating, descending

Benefit over time Who benefits the most from which information? Only showing the 93% of interviews conducted 30 to 90 days after survey response. n shown in brackets Whilst understanding continues to improve over time, other benefits deteriorate

By respondent status Who benefits the most from which information? n = 653 Benefits experienced are broadly similar across respondent status Survey

People living with / beyond cancer Who benefits the most from which information? n = 653 Some benefits peak early during treatment Survey

People living with / beyond cancer Who benefits the most from which information? n = 653 Other benefits peak during later treatment Survey

By gender Who benefits the most from which information? n = 648 Outcome ratings are broadly similar across gender OutcomeMales (average outcome rating out of 5) Females (average outcome rating out of 5) Difference Have better understanding Have information needed Feel less anxious Feel more in control Know what to do next Feel better able to make decisions Average of averages

By Gender Who benefits the most from which information? Only showing the 93% of interviews conducted 30 to 90 days after survey response. Whilst understanding continues to improve over time for males, other benefits deteriorate faster

By age group Who benefits the most from which information? n is shown in brackets Outcome ratings are broadly similar across age groups Survey

By age group Who benefits the most from which information? n is shown in brackets Outcome ratings are broadly similar across age groups Telephone

n shown in brackets (only showing ethnic groups with 10 or more respondents) Ethnic groups - outcomes Who benefits the most from which information? White European and White Other respondents benefit less across all outcomes Outcome White British (547) White European (34) White Other (12) Asian or Asian British (19) …I have all the information about the topic that I need at this time …I have a better understanding of the topic/condition …I feel better able to make the right decisions for me …I feel less anxious …I now know what to do next (e.g. who to speak to, what services to access) …I feel more in control

Only showing ethnic groups with 10 or more respondents White European and White Other mainly responded about online information (88% and 83%, compared to 67% across the whole sample) Asian and Asian British respondents were overrepresented by females (89%, compared to 67% across the sample) Asian and Asian British respondents were overrepresented by ages 16 to 25 (23% aged, compared to 3% across the sample) Ethnic groups – causal analysis Who benefits the most from which information?

By format of information, over time Who benefits the most from which information? Online infoBooklet CategoryOutcomeAt time of survey Two to three months after survey At time of survey Two to three months after survey Next stepsKnow what to do next FeelingsFeel less anxious Knowledge & understanding Have better understanding FeelingsFeel more confident CommunicationBetter able to communicate with PABC* 4.3 Next stepsFeel better able to make decisions Knowledge & understanding Have information needed CommunicationBetter able to communicate with your health / social care prof'l(s)* FeelingsFeel more in control FeelingsFeel less alone WellbeingMental / emotional wellbeing improved WellbeingPhysical wellbeing has improved3.03.1

By type of information, over time Who benefits the most from which information? GenericCancer-specific CategoryOutcomeAt time of survey Two to three months after survey At time of survey Two to three months after survey FeelingsFeel more confident CommunicationBetter able to communicate with PABC* Knowledge & understanding Have better understanding4.3 Next stepsKnow what to do next FeelingsFeel less anxious Knowledge & understanding Have information needed Next stepsFeel better able to make decisions FeelingsFeel more in control FeelingsFeel less alone CommunicationBetter able to communicate with your health / social care prof'l(s)* WellbeingMental / emotional wellbeing improved WellbeingPhysical wellbeing has improved2.93.2

Summary and conclusions

In terms of who has responded to date, there was a good spread across respondents’ status but almost 80% of respondents were over 45 and 90% of respondents were White. Female respondents feel more able to take the next steps after reading the information compared to male respondents. Respondents who look after someone with cancer were more likely to feedback on the booklets (as opposed to online information) than other types of respondents Carers and people undergoing treatment were more likely to feedback on generic information The information has the biggest immediate impact on PABC having a better understanding of the topic or condition after reading The emerging findings indicate that booklets have a bigger immediate impact than online information (4 to 39% higher) Outcome ratings from those who have / had cancer are broadly similar for respondents with other status’ (e.g. carers, friends/family) One sixth of respondents apply for benefits soon after reading information on benefits and financial help, plus almost half intend to do so in future Summary of findings Update

How do typical distribution numbers compare for booklets, to assess how representative the respondent mix is This will help differentiate between those preferring to access information in particular ways, and those more likely to provide feedback in particular ways Do women experience greater benefits, or are there are other factors (e.g. starting point earlier than males, bias in the way they have responded)? Are the experiences of under 16s significantly different? Are there barriers to applying for Macmillan grant or seeing a health or social care professional? Why does the information have a comparatively smaller immediate impact on reducing anxiousness / feeling more in control? Explore differences between ethnic groups further (response numbers too low at present) Finer grain analysis of each outcome, and each topic of information across booklets and online information How do outcomes change over time? Areas for further investigation Next steps Update

Follow-up offers received Next steps n = 546 DELETE? Ethnic group Survey respondents Telephone interview volunteers Discussion group volunteers White British47639%15% White European3033%13% White Other128%0% Black or Black British633%17% Asian or Asian British1540%27% Chinese10% Mixed650%0%

A written report will be drafted and sent to Macmillan for comment The written report will be revised based on Macmillan’s comment, and issued as a final version Project elements Next steps

1 Naoroji Street, LONDON, WC1X 0GB