Patient Information and Decision-making

This last weekend I have been reading a Picker Institute (an NGO) report entitled Evidence on the effectiveness of strategies to improve patients’ experience of cancer care commissioned (I assume that means paid for) by Macmillan Cancer Relief (another NGO) for the Department of Health’s (DoH) Cancer Reform Strategy.

It is not very good.It is mainly based on more general research into patient participation in their healthcare with very little specific to cancer treatment. This may be due to a lack of cancer-specific research, in which case, why commission an expensive report that pretty much reports the same findings of non-cancer patient participation reports?

However, I have more gripes about how the report deals with certain issues. Obviously, the discussion below is based on our own experience.

Firstly, there is a big difference between patient/carer information and patient/carer participation in clinical treatment decision-making. The two are overlapped in this report. As long as Kezia is responding as expected by the doctors, we are going to follow the UKALL 2003 protocol as representing the best T-cell ALL treatment knowledge to date.

If Kezia were to react badly to protocol medications and modifications to her treatment were required, I would expect information from the consultant, I would expect recommendations and we would certainly follow them. Who are we to know better?

Onto other gripes …

Given the DoH’s stated emphasis on correcting ethnic inequality in healthcare provision it is surprising to see “[Patient information needs] are shaped by demographic characteristics including gender and socio-economic beliefs, preferences and styles of coping”. No mention of ethnicity, no mention of Sickle Cell Anaemia in African or Afro-Caribbean communities, no mention of the problems of HPV/cervical smearing in Muslim communities, no mention of consultation with Muslim communities over the forthcoming HPV vaccinations for young teenagers.

The report does not adequately distinguish between public participation in preventive programmes – smoking cessation, HPV/cervical smears, breast examinations etc – from active participation in cancer treatment.

Our own participatory needs are most important in the active treatment of Kezia (yes, of course, I need to give up smoking and Nanda needs to have a cervical smear). Home chemotherapy treatment has been an empowerment, especially with the administration of Cytarabine through her Hickman Line during the first year of treatment. We received training and, being able to execute a seemingly complex and daunting procedure, increased enormously both our confidence and sense of participation.

Equally, explanation and provision of Kezia’s blood test reports has helped.

Information – the report states “The research indicates that many patients want more information than they currently receive and that health professionals tend to overestimate the amount of information they supply”. Leaflets have little real impact and websites are often full of Quackery – patients/carers need to be led to reputable sites which provide information at the level of general, health and scientific literacy they require. And it has been reported that information personalised to the individual is better (hence the importance of medical personnel communication skills).

Health literacy is identified as an issue – Nanda and my own levels of health literacy are at very different levels.

Let us start with me. I want to know all about Acute Lymphoblastic Leukaemia at all levels. The information provided by Cancer Research UK was finally not adequate, the slightly more sophisticated information provided by the Leukaemia Research Fund just wetted my appetite and then I found Patty Feist’s Pediatric Oncology Resource Center which admirably explains or points to explanations at all health literacy levels.

I am not a scientist. Yes, I have a Masters degree. And over the years here I have developed knowledge of biology – I roughly know a gene from a chromosome, DNA from RNA …

The scientific journals fail us patients/carers – dear publishers, you would not have many of us asking for an article and you could easily create a system to check up if we were bona-fide patients - or the UN you could put us in the WHO free medical journal scheme … Open-source …

Patty, whose son had leukaemia and being the Laboratory Coordinator at Columbia University’s Organic Chemistry faculty also found the level of material low for her personal needs. She was not even allowed to see a copy of the treatment protocol and had to obtain a “blackmarket” copy – so I am very happy at the openness of the UKALL 2003 trial in making their protocol free information over the internet.

Let us move over to Nanda. Most information is not available in any other language. A few leaflets are available in Urdu, Punjabi etc. Nothing in EU languages. No NHS or DoH websites seem to be available in other languages. The Cancer Research UK, Leukaemia Researh Fund, Clic Sergeant, Macmillan Cancer Support sites are not available in ethnic minority or EU languages.

Conclusion … the DoH and the EU should address these issues, perhaps through European-wide institutions such as European Cancer Organisation (ECCO) or other European-wide cancer organisations.