COMMUNITY CONVERSATION FOR FAMILIAL HYPERCHOLESTEROLAEMIA STUDY Brief report

Transcription

1 COMMUNITY CONVERSATION FOR FAMILIAL HYPERCHOLESTEROLAEMIA STUDY Brief report Analysis undertaken by A/Prof Caroline Bulsara School of Nursing and Midwifery and Institute for Health Research University of Notre Dame Australia

2 Contents Summary of views... 3 Introduction... 4 Raising awareness of FH in the general community... 4 Media and advertising... 4 General Practitioner education... 5 Better patient education and information provision... 5 The best way to contact trace family members... 5 Health practitioners... 5 The importance of targeted information... 6 Direct family contact... 6 Suggestions for how to deliver information and awareness... 6 Creating awareness... 6 How to deliver awareness information... 7 Suggested locations for awareness raising... 7 Screening... 7 Information needs of families... 7 Fertility and family planning... 8 Psychological impact... 8 Clear and realistic information needed for families... 9 Strategies for managing FH... 9 Appendix 1 Word Cloud from NVivo Appendix 2 Graphical representation of key themes... 11

3 Summary of views How can we raise awareness of FH in the general community? Media and advertising approaches. GP education so they can be an information resource. Patient education and provision of better information. When there is a diagnosis, what s the best way for family members to be contacted? Direct family contact through the GP was considered most effective Provide information on FH through health practitioners (GP, possibly chemists pamphlets) Information should be targeted such as fact sheets. What information family members need to be given? Clear and realistic information needed about FH Fertility and family planning information would be helpful How to cope with the psychological impact Strategies for managing FH More information on treating children

4 Introduction A community conversation on primary care research in familial hypercholesterolaemia was facilitated through the WA Consumer and Community Health Research Network and included members of the FH Support Group and FH Australasia Network. There were 14 participants involved in the discussion. Two members of the research team attended to answer research specific queries. The research team provided a brief overview of the planned study. The key questions discussed were as follows: How can we raise awareness of familial hypercholesterolaemia (FH) in the general community? Question 2: When there is a diagnosis, what s the best way for family members to be contacted? Question 3: What information do those family members need to be given? Responses from community members were as follows: Raising awareness of FH in the general community Q1. How can we raise awareness of FH in the general community? A number of key areas were identified by participants as to how to raise awareness in the general community. They were as follows: Media and advertising approaches. GP education and as an information resource. Patient education and information needs. Media and advertising Community members spoke of a number of media events and outlets to notify the community about FH. Primarily these pertained to advertising such as buses and television. Other participants suggested the more targeted events such as forums and community events may be effective, Community events and forums. For example like telethon or HBF Run for a Reason. And broader suggestions such as a World FH day were also noted. It was also noted that providing straightforward, simple information would be best, Help make info simple to explain to general public. Other media suggestions included articles in newspapers and online, television advertisements, specific program such as Today Tonight, use of social media particularly for younger persons and could include a fund raising challenge. Finally, it was also suggested that FH awareness could be included through a larger not for profit organisation such as the Heart Foundation, Tack on to Heart Foundation to piggy back on the profile. And,

5 Use the Heart Foundation to give the information. General Practitioner education A number of participants also highlighted to crucial role of the GP in raising awareness through provision of information. This also included a number of strategies from flyers and posters in GP practices and also more directly in assisting GPs to educated patients. For example, Posters at GP surgery on walls general info not too detailed. GP education they need to give info to patients, they need to be able to ID FH better so patients don t get wrong info GPs are not picking it up patients are better educated than doctors. One participant also spoke of the need for GPs to monitor the physical impacts on patients and education to raise awareness between, the difference between FH and high cholesterol. Other participants also believed that there needed to be a broader strategy around providing GP education and professional development workshops. Better patient education and information provision Participants also pointed out that it was equally important for patients to be educated about FH and to also receive better information than what was currently available. We need better info for FH patients i.e. They didn t know about the deposits. Participants also pointed out the need for more options for patients and the need for patients to be well enough informed to educated others too. It was suggested that a website which is comprehensive and provides clear information would be useful along with leaflets about medications. The best way to contact trace family members Q2. When there is a diagnosis, what s the best way for family members to be contacted? A number of best ways to contact family members were proposed by participants. Key areas were as follows: Through health practitioners (GP, chemists etc) Targeted information such as fact sheets. Direct family contact through the GP. Health practitioners It was suggested that the chemist could give out information as scripts were being filled on the importance making family members aware, Chemist could give out when giving out cholesterol medicine script. Participants also suggested that doctors could play a role in notifying / contacting family members either directly or indirectly, Doctor[could] call family member Doctor needs to be informed. Give a preform letter which would show the Index results.

6 And indirectly, GP could give a pamphlet and link it to the index relative with FH and that person would then go to the GP. One participant felt that this would be a more targeted and strategic approach. Letter from doctor [would be] tangible, important, mention FH and not just cholesterol. The importance of targeted information Participants also pointed out that correct and targeted information was very important. As one participant worded this, Correct information and not Dr Google. Perhaps a fact sheet. Another defined what type of information should be included, Include what important early intervention and why. Need direct information and not beat about the bush. There should also be a registry, cascade testing and a manual. Direct family contact Participants noted that having direct contact with family would very much depend on family dynamics. Others felt that having a patient inform their family would be appropriate, Let patient inform family plain language questions you could ask. Patient let family know. Through patient or to family direct. Suggestions for how to deliver information and awareness One participant suggested a word of mouth approach and another felt that presenting case studies to family members would help them to understand the FH testing and possible diagnosis. Word of mouth by the converted advocates Word of mouth to other mums they still didn t do anything about testing their kids. Creating awareness Lack of information or specific information was noted as being hard to find. Additionally, misinformation was also an issue at times. One participant said, Nutrition awareness, fighting the misinformation e.g. coconut oil, statins bad. Another spoke of the fear mongering and misguided advice as problematic, in particular regarding statins,

7 Fear mongering about statins e.g. Catalyst program on television. Negative publicity on Lipitor/statins on internet, nothing to support taking it. Lots of info on the web on herbal remedies. Some patients stopped taking meds due to negative publicity. The new sugar movement - fat cure, still not ok for people with FH. Other participants felt that having a designated website would prevent the misinformation. We need a designated website. It was also noted that creating greater awareness would ensure correct and targeted information to avoid hysteria in the general public. How to deliver awareness information Participants had a number of suggestions around delivering awareness information. These ranged as follows: A designated awareness day. Social media. Raising awareness of needing tests in 20 year old age range. Support groups. Having an ambassador a celebrity to promote a specific day of awareness. Need a new name snappier!. Suggested locations for awareness raising Participants suggested that children s hospitals and schools through food awareness programs would be useful. In addition, chemists could provide information and awareness. Information stalls in public places such as libraries were also recommended. Promotion at hospitals, Royal Perth Hospital, Charities, Private stall at expos, shopping centres free tests. Screening Screening was suggested at a number of life stages by participants. One said that screening at birth would be useful but that this might be too costly. Another spoke of creating an awareness to have children screened. One participant said that checks could be free and health insurance providers could include FH with cholesterol testing. Information needs of families Q3. What information do those family members need to be given? The information needs of families were identified by participants across the following areas: Fertility and family planning Coping with the psychological impact Clear and realistic information needed Strategies for managing FH

8 Fertility and family planning There was a call for greater information around the topics of fertility, family planning. One participant said, Need more info on Fertility and trying for baby, planning etc. How can they manage condition and carry baby to term? Will the condition get passed on? In addition to this another highlighted that patients had been advised not to have children. In terms of GP management of the condition, it was suggested that having a clear management plan in place for pregnant women and those planning pregnancy. On participant was unsure as to how to avoid taking statins when pregnant or breastfeeding. In terms of family management of the condition, it was suggested that they be referred to an FH clinic and depending on severity, that this be managed either through a GP or a specialist. One participant spoke of a teenager that was diagnosed but not managed and that the person should not feel guilty for not exploring family history for FH. They said, Patient diagnosed with high cholesterol at 15years old. For the first 8 years nothing done. Lots of doctors would ask did you parents have high cholesterol? But you need to know it s not your fault. You don t have control over it. Next steps were also important to parents of young children. One explained, I am the mother of 2 girls and 1 son. I got told to go to GP to diagnose children and if diagnosed then Dr will put on medication. I want to know how this will be managed when the girls want to try to get pregnant. Psychological impact This was a theme for some around the psychological impact of an FH diagnosis. One participant said that a person requires psychological support and another that the initially diagnosed person should not be responsible for following up family members, The Initial (diagnosed) family member needs to be relieved of the burden. Doctor or someone else needs to follow up with the family members. Another spoke of doctors poorly handling the management of the diagnosis and the condition. Sometimes this was due to lack of education about FH amongst GPs, Difficulties with doctors to approaches to treatment e.g. [GP should say] if you don t take this medication you will die. Where we stated that many GPs don t know about FH. Make sure that family members do pursue and ask for more info on FH because if FH, it may not be cured.

9 Clear and realistic information needed for families Some participants said that the information should be individualised. Others expressed concern over the insurance policy guidelines and whether insurance policy might change to adverse effect families. Insurance policies does it affect them? E.g. If die of heart related condition does this mean less money to the family? Better information was also sought around what to do in the longer term if a child is diagnosed. Another added that it was difficult to know when to start children on medication. A further concern with medication for children was that participants felt that there was not enough information and research on children taking statins. Not enough research on children who take statins. For example, a child from age 11 and child from age 7 were on statins, doubled the dose, now stopped. Participants were also asked what tactics might be used to create better awareness about the importance of screening. One felt strongly that scare tactics would work better to highlight the seriousness of the situation. He said, What the problem is? Scare them. Create the fear of death take it seriously. I have four sons and none take it seriously. How to proceed was also highlighted or next steps. This is what it is, next steps, how to find out more info, general treatment be really clear and concise. Another participant reiterated this as follows whilst highlighting how important the wording is, Graded what you can expect. Whoever is delivering the info needs to tailor it to the individual, e.g. some need neutering, some just say, give me the pack and away they go. The word may. You may have it, it could be treatable. Strategies for managing FH Participants also spoke of the importance of diet and exercise in managing FH. It was highlighted as very important to let the community know that it doesn t just affect the older members of the community, Not just relevant to mature aged people. It can affect anyone. It was highlighted by number of participants that management of young adults was particularly problematic and that greater awareness was needed. One participant asked, Youth - What if that stop taking their medication? For example if they cannot be bothered and it is difficult to manage long term conditions.

10 Appendix 1 Word Cloud from NVivo

11 Appendix 2 Graphical representation of key themes