Leprosy - then and now

In Mark 1:40, Jesus heals a man with leprosy. 

I think in the past I came across the idea that "leprosy" in the Bible might not actually be the leprosy that we know today.   Indeed, there is work by Biblical scholars and others to back up my memory.  This article by Cochrane (not Archie), material from Cornell, and an article from the Jewish Encyclopedia.  There is also Encyclopedia Judaica, made available online by the Bureau of Jewish Education in Indiana (search for "leprosy").

A PubMed search for leprosy AND bible finds 54 items, the oldest 1873 and the most recent October 2013.

Patient.co.uk has information (for professionals). Public Health England has advice, with statistics.  Leprosy is rare in the UK, although it is a notifiable disease.  Between 2001 and 2010 there were 129 cases.  No case has definitely been acquired indigeneously since 1925.  However, globally, (figures from that same document) there were 244796 cases in 2009, over half of them in the South East Asia region of WHO.  Numbers of cases have been falling year on year since 2003, and in 1985 there were around 5 million.  There is a figure of "prevalence" for 2008 nearby, which is lower than the number of new cases detected, so I am not sure what this figure is, but whatever it is, the fall is striking.   

The same statistics, but containing 2010 and 2011 are in this WHO Weekly Epidemiological Record.  This also includes figures for the number of new cases, by country.


So, back to "leprosy" in the Bible.  

It's certainly interesting to explore whether "leprosy" in the Bible was leprosy as we know it, and if it was not, what it was.  It is also important to think about how it was regarded in the Bible (Jewish and Christian) and how Jesus regarded people with it, whatever it might have been.


Mark 1:40 has resonance today.   A longstanding friend of ours, Stephen Haward, wrote a Sunday School syllabus for the United Church of Zambia called Believing and Belonging, and uses the story to address the topic of HIV.  What do the stories talk about for me?   What is leprosy for the UK?

In closing, have a look at the work of the Leprosy Mission, a Christian organisation working with people affected by leprosy.   There is still discrimination against people with leprosy, and they have a programme of advocacy.  Their "Don't call me a leper" campaign addresses discrimination and stigma in the UK by campaigning for the word "leper" to be lost from current usage.   Have a look too at their information about leprosy.

SciELO and LILACS - a way into the Latin American literature

SciELO and LILACS are databases covering literature from Latin America and the Caribbean, and in the case of SciELO, other places.   It will include material that Medline, Embase and other “usual” sources miss.  

I have seen both mentioned as sources searched for systematic reviews.   In addition to that, of course, they will be useful if you have an interest in those parts of the world or health issues endemic there.

SciELO

SciELO (“Scientific Electronic Library Online”) is a database of open access journal articles published in Latin America, the Caribbean, Spain, Portugal and South Africa.  It is really, I think, an online publishing platform.  It covers many subjects, but includes health sciences, social sciences and biological sciences.  In addition to being available at www.scielo.org, SciELO Citation Index has been made available to subscribers to Web of Science.  A quick search for the same topic via the usual interface and via Web of Science suggests that the two interfaces do not cover the same date range.  In WoS you are of course using the standard WoS interface, although WoS subject categories are available via the usual interface.  The default search interface at that "usual" place is in Portuguese (SciELO is based in Brazil), but there are interfaces in English and Spanish.    I cannot see a search guide on the site, so will need to write one!

LILACS

LILACS (“Latin-American and Caribbean System on Health Sciences Information”) covers health subjects only, and involves the WHO.  It has an English interface, and is a database of journal articles, books and theses from Latin America and the Caribbean.   Some of it is available in full text via links to SciELO.   Topic specific queries available from the home page include Millennium Development Goals, gender and health and social determinants of health.   There are also queries for specific study types.   The FAQs tell you more about LILACS.

Influenza in France, India, and England and Wales

Le Monde is reporting 600000 new cases of flu in a week, the article referring to a bulletin from the INVS, the Institut Veille Sanitaire.

Another article in Le Monde describes this year's outbreak of flu as the most important in the last five years, and has graphs of the number of people hospitalised, the incidence per 100000 people, and one depicting the cases in the last five years.  The INVS is suggesting this year's outbreak, mostly due to H3N2, is nearing its peak.

Thinking of flu, the HPA's weekly bulletin for England and Wales is here (for 19th February), and the New York Times has a topic page drawing together all its material about influenza.  This page carries its report that India is currently experiencing an epidemic, due to H1N1.

Eclampsia

My son is fascinated by whales and other sea creatures, and so my eye was caught by the title of Jacqueline Wilson's book "The Longest Whale Song".  I had a look at it, and then my attention was caught by the subject matter.

Warning - spoiler alert!   If you are reading the book at the moment, you might not want to read the bit below!

Ella's mum is pregnant at the start of the book.   A few pages in, she goes into labour and into hospital.  Her stepdad is very slow to let Ella know about the new baby, and this is because there have been complications, and Ella's mum has gone into a coma.  This is because of eclampsia.  Ella visits every day, and talks to her mum.  Ella discovers whales and draws them, writes about them, and makes her own book (my son would like to meet her!).   She is captivated by whales' songs, and is given a CD by a friend's mum, which she then plays to her mum in hospital.   What happens?  Read the book to find out! 

That is enough material for a story, but there is more.  We see how Ella's relationship with her stepdad changes, and with her friends.  We see people's reactions to what has happened, including of course Ella's and her stepdad's.  

We see how the nurses and doctors interact with Ella's mum, and with Ella.   Some of them are good at it, others definitely not, and there is much material that could be used with healthcare students!

Eclampsia






Eclampsia is what can develop if pre-eclampsia is not addressed (although it does not develop in all cases). Eclampsia involves high blood pressure, seizures, and I think (some sources below mention it, though not all), can involve coma.

Here is some information:

NHS Choices about pre-eclampsia - there is a bit about eclampsia under "Complications".

MedlinePlus about eclampsia

Patient.co.uk about both

Action on Pre-Eclampsia is a UK charity and has leaflets about eclampsia and pre-eclampsia.

GAIN, the Guidelines and Audit Information Network in Northern Ireland, have a guideline on Management of severe pre-eclampsia and eclampsia, published in 2012.

Clinical Knowledge Summaries on Hypertension in pregnancy. 

Genetics Home Reference about pre-eclampsia, but mentioning eclampsia.

Finding Serious Case Reviews

Last year, in response to an enquiry, I put together a handout for social work students at the University of Leicester about how to find Serious Case Reviews.  I have revised the text for this posting, and made the revised handout available to students via the "My Subject" page for Social Work. I checked the links on 5th August 2015.

What is a Serious Case Review (SCR)?

In England, Local Safeguarding Children Boards (LSCB) conduct a review of any “serious case”.  A case is a “serious case” if abuse or neglect of a child is known or suspected, and if a child has died or been seriously harmed and where there is concern about how agencies have worked together to safeguard that child.  SCRs are conducted in accordance with guidance published as chapter 4 of the 2013 publication Working together to safeguard children.

The Serious Case Review Panel is a national panel of independent experts who advise LCSBs about conducting and publishing SCRs. 

The NSPCC have information about Serious Case Reviews. In Scotland, Wales and Northern Ireland, there are different arrangements, and the NSPCC has information (scroll down). 

Publication of SCRs

The guidance states, in relation to publication of reports:

“All reviews of cases meeting the SCR criteria should result in a report which is published and readily accessible on the LSCB’s website for a minimum of 12 months. Thereafter the report should be made available on request.”   

(Working together to safeguard children, p. 71)

This suggests that SCRs are easy to find.  However, LSCBs must consider, when publishing SCRs, how to manage the impact of the report on the child and the family, and must comply with the Data Protection Act and any court orders.  They must also send the report to the national panel of independent experts one week before publication, so that the panel can advise if the report should not be published.   

In my (limited) experience, reviews seem to be available only in edited or redacted form, or only as summaries.  This is perhaps explained by the presence of court orders or legal proceedings, of data protection issues, or of guidance from the national panel.

Finding SCRs

Names of subjects
Legal and other issues may mean that names of children and families are removed.  This may make it difficult to find a specific report.  If you cannot find it by name of child, try searching by name of place.

NSPCC Library Catalogue
LCSBs are asked to submit published reports to the NSPCC for inclusion in a national repository of SCRs, which was set up in late 2013.  The repository forms part of the NSPCC’s Library catalogue.  There is a link to the National Case Review Repository here, and links to reviews published in 2014 and 2015 (scroll down).   
 

Social Care Online
Some SCRs are indexed in Social Care Online.    Doing an Advanced search for the subject term serious case reviews seems to find many, and searching for relevant search terms will find particular ones.

LSCB websites
Otherwise you should be able to locate a report via the website of the LSCB in question.  You can find the LSCB website by following links from the appropriate local authority or by a web search.

Research funding and conflicts of interest

The Guardian reports Susan Jebb's response to a BMJ piece about the food industry funding research into food and nutrition topics.  Professor Jebb is chair of the Public Health Responsibility Deal, and the Guardian reports several people who defend her independence, which she herself asserts.   The three articles referenced in the BMJ piece appear to be peer reviewed articles.  The ICMJE Conflicts of Interest form (found via the EQUATOR site) indicates that authors need to declare any associations with entities relevant to the work.  Do peer reviewers need to take this into account?   Nothing I have found indicates they have to.  Do they in fact know who funded the research they are reviewing?   Would it give them information that might help them identify who wrote the research?   They do of course have to critique the methodologies used.   If the funders had any influence over the research, would it show up in the choice of methodology, the presentation of results, or the discussion of those results.  Interestingly, Behind the Headlines and CASP checklists both appear to make no reference to who funded the research being critiqued.

The World Association of Medical Editors have a document about conflict of interests, which describes what authors, editors and reviewers have to do, but reviewers' COI seems to relate to conflicts of interest with the authors, or their field of research, rather than whether they shoudl know or take into account the authors' COI regarding sources of funding.  

EQUATOR has guidance on industry sponsored research, largely about using industry "ghost" writers to produce the papers, but it does include links to guidance for pharmaceutical companies.

Another Guardian piece reports that research into plain cigarette packaging in Australia, which was publicised by the tobacco industry as showing no effect, and which was funded by a tobacco company, has been criticised "on the BMJ website".  Actually, the piece concerned is not on the BMJ website but a peer reviewed article published online in the journal Tobacco Control (which is a BMJ journal).

This research was not peer reviewed.  I (along with at least one commenter on the Guardian site) wondered why not. But, looking for the paper online reveals it is a working paper, published by the Department of Economics at the University of Zurich.  My limited understanding (I am a medical librarian, really!) of economics literature is that "working papers" are an important way to publish research in economics, and are discussion papers, preliminary results, not peer reviewed before publication.  Rather, they are  in effect peer reviewed after publication.

So, the Tobacco Control article is perhaps part of that post publication review.  The Guardian link to it, but you will need to pay or have a subscription to read the full article.   The University of Leicester has a subscription, so I have seen the full thing.   The Tobacco Control paper authors say that the Zurich authors were provided with the data (from an Australian market research company) by the tobacco company in question, which I can't immediately see in their working paper, but their arguments seem really to be with the statistical methods employed by the Zurich authors.  That would perhaps have been picked up by peer reviewers, but is now being picked up by this post publication review of a working paper.

Perhaps accepting funding will restrict the places where you can publish (Tobacco Control, for example, will not accept work funded by the tobacco industry).  I do think that research funders should not be able to influence what the researchers find or report.  That should be made clear to them when the funding is accepted and presumably is the sort of thing that your institution would advise you about when considering whether to accept funding or not.  

However, there is a Cochrane Review (Lundh A, Sismondo S, Lexchin J, Busuioc OA, Bero L. Industry sponsorship and research outcome. Cochrane Database of Systematic Reviews 2012, Issue 12. Art. No.: MR000033. DOI: 10.1002/14651858.MR000033.pub2), which suggests that industry sponsorship does in fact influence results.

More research needed on my part, perhaps. 

Karl Bonhoeffer

Many years ago I read a lot about Dietrich Bonhoeffer, the minister and theologian.  His ideas about the church and Christianity I found interesting, and I was also interested in his involvement in plots to kill Hitler.  He was executed in 1945 for that involvement.  

And so I discovered that his father, Karl (1868-1948) was a psychiatrist.  And because at the time I worked at the Royal Society of Medicine Library in London, which was (and is) a research library of historical record which kept all sorts of things, and we had Index Medicus in print and Medline on CD Rom, I could find material about him and then find the actual articles.  

Karl seemed to have been a psychiatrist of some note.   People published Festschriften in his honour when he reached significant ages (and we had them, in German).  But what did he know about what his family were doing?   Two sons and two sons in law were executed by the Nazis.   I seem to remember reading in one biography of Dietrich that Dietrich had used Karl's car to transport material to use in an attempt on Hitler's life.    And what did he think of the Nazis' policy of sterilisation?   Was he involved?  I seem to remember material that indicated he was.  But why?  


I had at the time written an article about Jean-Paul Marat, the French revolutionary, who was a doctor, and meant to write something about Karl Bonhoeffer.  But other things happened instead, and I never did.  Perhaps this is it!   

Anyway, I have just looked again for material about Karl, using the University of Leicester Library search, and found a new thing, and a thing I am not sure I have found before.  

The new thing comes from a symposium about Karl's role in Nazism, and is an article by Hanfried Helmchen published in German this year in Der Nervenarzt, and asking about his position on sterilisation (1).   And a short piece in the American Journal of Psychiatry in 1944 (2), which seems to be a reprint of a Lancet obituary, reporting that Karl had died the previous year at the age of 75.   In fact, he did not die until 1948, which leaves me wondering where that report came from and why.

I hope this is a work in progress!

References

(1) Helmchen H. Bonhoeffers Position zur Sterilisation psychisch Kranker. Nervenarzt 2015;86:77-84.  doi: 10.1007/s00115-013-3999-x
 
(2)  Karl Bonhoeffer. Am J Psychiatr 1944;101:127-8.

Searching PROSPERO

Prospero is an international database of systematic reviews.  Reviewers can register review protocols in it, and link to publications once they appear.   Prospero is hosted by the Centre for Reviews and Dissemination at the University of York.  There is information about registration and the data that is required here.

Searching Prospero before you start a review could stop you duplicating work that is already in progress.  

As part of an enquiry at work, I was searching Prospero for reviews to include in a review of reviews (an "umbrella review").   Searching Prospero would locate reviews in progress, and would identify published reviews (alongside those identified using Medline and other databases). 

I have not found any search help specific to Prospero.  I am fairly sure the search help at http://www.crd.york.ac.uk/crdweb/GuideToSearching.asp applies to the other CRD databases.  

The References and Resources section contains a lot of useful information, including reviews of progress, and there are some interesting articles about Prospero under "Registering a systematic review", but the main emphasis of all the material seems to be about registration, not searching.  So, I thought it might be useful to "publish" my notes about searching Prospero.

Complex search strategies are difficult.  You can't see a search history, and so can only submit one query at a time.  If you use one search box, you can't use Boolean operators, although you can use * to truncate.  You can't enter phrases in inverted commas, but I wonder if phrase searching is the default.  Using more than one search box does give you a way to search using Boolean in one field (change the drop down box at the top) or across fields, but you have to have just AND or OR.  

You can't export results, only view them, so reviewing results for items to include in your research would need to be done on screen, and I am not sure how you would then put those items into reference management software for retention.

The Participants/Population field records details about the group(s) being studied in the review.  My enquiry involved finding material relating to older people.  Searching for aged did not work, as this found phrases like "patients aged 10 or above".  Older worked better, although that still found phrases like "30 years and older".  Elderly and geriatric worked as well.  There is no standardisation in this field, and no equivalent of Medline's age limits.

You can display all published records, and doing so shows that at the moment there are 5739 records, so the dataset is a lot smaller than something like Medline, and this combined with the fact that searching Prospero would be to augment more systematic searches done elsewhere, means that broader searches are still practical.