Completed Research Projects

One of the objectives of the Thalidomide Trust is to fund research that can help improve the lives of Thalidomide survivors.

The projects that have been conducted cover many different aspects of health, wellbeing and issues that affect the daily lives of those affected by Thalidomide.

Most recent project

The changing health of Thalidomide survivors as they age: A scoping review

Elizabeth Newbronner, M.A. (Cantab), M.B.A

Aims

The aim of the review was to bring together, for the first time, the evidence about the Thalidomide-related health problems Thalidomide survivors are experiencing, as they grow older.

What was found

Twenty-five relevant papers were found. They included biomedical papers focusing on specific health problems, alongside surveys and mixed method accounts exploring the health of Thalidomide survivors. Most studies had physical health as their primary focus.

The two most frequently reported groups of health problems were musculoskeletal and mental health conditions.

Themes

The key health themes reported in the 25 papers are summarised in the table below.

For each theme the author highlights the main issues experienced, and lists the relevant papers that give the details of the studies.

Click on a theme to view the relevant information.

ThemeMusculoskeletal ProblemsPain and Neuropathic SymptomsDental Problems/Facial DamageDeteriorating Sight and/or HearingGeneral HealthMental Health

Key Findings

Relevant Papers and Reports

Key Findings

  • Musculoskeletal problems are the most common health issue amongst Thalidomide survivors
  • The prevalence and severity of musculoskeletal problems appears to increase with the severity of Thalidomide survivor’s impairments but this relationship is not simple or linear
  • Secondary damage to joints and muscles is primarily caused by ‘overuse’ and postural adaptations
  • The pain and movement restriction caused by secondary damage is compounding existing impairments

Relevant Papers and Reports

Ref 12. Kennelly, C. Kelson, M. and Riesel, J. (2002). Thalidomide-impaired People: Quality of Life. The College of Health/Thalidomide Society.

 

Ref 13. Newbronner E, Chamberlain R, Borthwick R, and Baxter M (2011). Taking the Pressure Off: Evaluation of the Health Grant to Thalidomide-impaired People. The Thalidomide Trust: St Neots, UK.

 

Ref 14. Kayamori R (2013). Post-Thalidomide Syndrome 50 Years On. Japanese Journal of Rehabilitation Medicine. 2013; 50; 957-96.

 

Ref 15. Newbronner E, Chamberlain R, Borthwick R, and Baxter M (2012). Looking to the Future: Evaluation of the Health Grant to Thalidomide-impaired People. The Thalidomide Trust: St Neots, UK.

 

Ref 16. Nippert I, Edler B and Schmidt-Herterich C (2002). 40 Years Later: The Health Related Quality of Life of Women Affected by Thalidomide. Community Genet 5: 209–216.

 

Ref 17. Bent N, Tennant A, Neumann V and Chamberlain M A (2007). Living with thalidomide: health status and quality of life at 40 years. Prosthetics & Orthotics International 31(2): 147-156.

 

Ref 18. O’Carroll A, O’Reilly F and Whitford D L (2011). What has happened to people affected by thalidomide 50 years on? Irish journal of medical science 180(2): 475-478.

 

Ref 19. Vermette and Benegabi (2013). Study on the current living conditions of Canadian Thalidomide survivors and projections for the future. Thalidomide Victims Association of Canada.

 

Ref 20. Kruse A, Ding-Greiner C, Beckerr G, Stolla C, Becker A-M, and Baiker D (2013). Regular surveys on problems, special needs and care deficiencies of victims of Thalidomide – synopsis of final report presented to the Contergan Foundation for People with Disabilities. University of Heidelberg.

 

Ref 21. Peters K M, Albus C, Lungen M, Niecke A, Pfaff H and Samel C (2015). Damage to Health, Psychosocial Disorders and Care Requirements of Thalidomide Victims in North Rhine Westphalia from a Long Term Perspective. Federal Health Centre North Rhine Westphalia, Cologne.

 

Ref 22. Newman, R. J. (1999). Shoulder joint replacement for osteoarthrosis in association with thalidomide-induced phocomelia. Clinical Rehabilitation 13(3): 250-252.

 

Ref 23. Ghassemi, S. A. Danielsson, B Karlsson, J. Danielsson, A. J. (2014). Long term follow-up of thalidomide embryopathy: malformations and development of osteoarthritis in the lower extremities and evaluation of upper extremity function. Journal of Child Orthopaedics 2014; 8:423-433.

 

Ref 24. Ghassemi Jahani SA, Danielsson A, Ab-Fawaz R, Hebelka H, Danielson B, Brisby H (2016) Degenerative Changes in the Cervical Spine Are More Common in Middle-Aged Individuals with Thalidomide Embryopathy than in Healthy Controls. PLoS ONE 11(5): e0155493.

 

Ref 25. Meyers E M and Jutai J W (2011) The Disability Experience: Living with a Birth Defect Resulting from Thalidomide Exposure. Interdisciplinary Journal of Health Sciences 2 (2).

Key Findings

  • Neuropathic pain and symptoms are more common amongst Thalidomide survivors (including those with no Dysmelia) than the general population
  • The causes of neuropathic pain and symptoms are disputed and often unclear
  • Thalidomide survivors are more vulnerable to compressive neuropathies but these are hard to diagnose and treat

Key Findings

  • Thalidomide survivors have higher levels of decayed, missing and filled teeth, and tooth wear than the general population
  • The causes of poorer dental health are multiple, including difficulties with dental hygiene, using teeth as tools and regurgitation
  • The dental and facial health of Thalidomide survivors is vulnerable

Key Findings

  • Thalidomide survivors are reporting deteriorating sight and hearing
  • It is unclear whether this deteriorating in sight and hearing is Thalidomide related or due to general aging
  • There is very little evidence about the extent and nature of deteriorating sight and hearing, and the impact on Thalidomide survivors’ quality of life

Key Findings

  • It is difficult to accurately measure blood pressure and body mass index when people have missing or short limbs and this make affect treatment/prevention difficult
  • Some Thalidomide survivors are aware that they are at risk of lifestyle related diseases but find their Thalidomide impairment make it difficult manage their weight or exercise
  • Hypertension may be more common amongst Thalidomide survivors but more evidence is needed

Key Findings

  • Mental health problems appear to be more prevalent amongst Thalidomide survivors than the general population
  • Depressive disorders are the most frequently diagnosed or reported mental health problem
  • The relationship between mental health and severity of impairment is unclear but Thalidomide survivors with severe hearing impairment and facial damage appeared to be at greater risk of developing depression
  • Other risk factors for poor mental health are similar to the general population and include poor social networks; living alone; unemployment; the need for on-going assistance; and recent experience of pain

Importance of the project for people with Thalidomide damage and Professionals

The literature about the health of Thalidomide survivors as they age is not extensive. It is not of the highest level of scientific rigour and many of the biomedical studies have a narrow focus on specific conditions or pathologies.

Nevertheless, the studies in this review make an important contribution to an under researched area and together they do present a picture of the secondary damage people are now experiencing.

The 25 papers above, and the full reference list in the published article provide an important bibliography of available information on this issue at the present time.

 

The full published article can be viewed here:

Elizabeth Newbronner, M.A. (Cantab), M.B.A
The changing health of Thalidomide survivors as they age: A scoping review

10.1016/j.dhjo.2017.09.004


Other completed projects

Clinical Research

Health, Wellbeing and Quality of Life Research

Cost of Living With Thalidomide Research


Peripheral Nerve Dysfunction in Middle-Aged Subjects Born with Thalidomide Embryopathy

Aims

The Thalidomide Trust commissioned a pilot study to evaluate the presence of paraesthesia (pins and needles), numbness and pain (peripheral neuropathy) in adults with thalidomide embryopathy.

What was found

Compressive problems affecting the nerves and spine are shown to be common in adults with thalidomide embryopathy. If pain, pins and needles, numbness, weakness, or alterations in bowel or bladder function occur, it is important for such people to be assessed by specialists with experience in this area.These problems may have specific treatments which would aim to improve these symptoms and/or prevent further damage to the nervous system.

If the symptoms are more widespread, and particularly if they affect both feet in a similar way, there is a chance that they may be due to the long term effects of previous thalidomide exposure. In this situation it remains important that other causes are excluded, as these may have a specific treatment. Examples of other potential causes include nerve compression, diabetes, alcohol exposure and vitamin deficiencies, along with many other rarer causes. Even if no other cause is found, there are particular medications and non-tablet approaches used to treat pain due to nerve damage which may be helpful in all of the above situations. The input of a neurologist or pain specialist may help to optimise these treatments.

 

The full published article can be viewed here:

Peripheral Nerve Dysfunction in Middle-Aged Subjects Born with Thalidomide Embryopathy

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Falls and Balance

Aims

For some time now there has been anecdotal evidence that, as beneficiaries grow older, falls and/or balance problems are becoming more common, and the associated fear of falling is affecting peoples’ daily lives. Research was carried out with beneficiaries in 2016 to discuss the main problems they were experiencing.

What was found

The research was done through completion of an online survey and by taking part in a telephone discussion group. The main subject areas covered were:

  • frequency and causes of falls
  • medical help sought
  • consequences of the fall - physical, psychological and social
  • prevention, solutions and support

The information on the areas varied depending on the severity of the thalidomide damage as well as the age of the beneficiary. However, a common theme was that people were often reluctant to go to their GP as they felt that the GP would not understand the implications of their thalidomide damage in relation to falls.  In addition, many found that fear of falling affected their independence and general wellbeing.

The discussion groups revealed that it was reassuring for the beneficiaries to know that they were not alone in experiencing problems with falls and balance.  It was felt that by providing information about these problems was an important step to help all beneficiaries and GP's understand the issues.

View the full published article here:

Falls and Balance Problems Briefing Paper FINAL

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Bladder and Bowel

Aims

One of the striking findings from the 2015 Health and Wellbeing survey was the number of beneficiaries who reported having bladder and/or bowel problems - 72 (20%) had bladder or continence problems and 98 (28%) had bowel or digestive problems. Research was carried out with beneficiaries in 2016 to find the main problems they were experiencing.

What was found

The research was undertaken through an online or post survey and telephone discussions.  The 2 main areas were to collect information on:

  • bladder and continence problems
  • bowel and digestive issues

The results focused on the type of problem experienced, the length of time that this had been going on and how the respondents had tried to address it, whether that was self managed or through medical treatment.

In addition the beneficiaries also noted how this had affected their daily lives and general wellbeing.

Anecdotal evidence suggests that some conditions such as IBS may be more common amongst thalidomide survivors. Whilst more data is required to support this some participants felt that an additional piece of research into this aspect would be worthwhile.

View the full published article here:

Bladder & Bowel Incontinence Briefing Paper FINAL

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Healthcare Services - Access, Quality and Improving the Care Pathway for Thalidomide Survivors

Aims

To explore beneficiaries' experiences of healthcare services in more depth, and to seek ideas for improving the 'pathway of care'.

This is a follow on piece of research from a Health and Wellbeing survey that the Trust carried out. Beneficiaries had raised concerns over access to appropriate healthcare for their thalidomide damage.  In addition the Trust had received a significant number of enquiries for their support in helping beneficiaries obtain healthcare.

What was found

Information from beneficiaries was obtained through a focus group discussion and a number of one-to-one interviews.  Their personal experiences of accessing healthcare were obtained in the following areas:

  • primary care and referral process
  • monitoring, diagnosis and screening
  • treatment and care
  • rehabilitation and convalescence
  • supported self-management

Feedback was then obtained on a key service provided by the Trust - to provide information, advocacy and advice on health and wellbeing issues, so that beneficiaries can maximise their health, independence and quality of life.  Ideas were provided to build and extend this service to improve the pathway of care. The main initiatives were:

  • Health and Wellbeing team
  • Information about Thalidomide damage and health
  • Network of specialists
  • Clinical research
  • Peer to peer support

View the full published article here:

Access to Healthcare Services

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The Legacy of Thalidomide

Aims

A multidisciplinary meeting was held at the University of York in September 2016 and was attended by beneficiaries, historians, scientists, clinicians, and social scientists to explore what lessons can be learned from the history and use of the drug, its impact and ongoing consequences today; and how this knowledge can benefit thalidomide survivors and others with rare impairments.

What was found

The meeting had three sessions, each highlighting different perspectives: historical, contemporary, and personal. Professor Karl Atkin, Head of the Department of Health Sciences at the University of York, opened the day. He remarked on the importance of understanding the life course when making sense of long-term conditions, and in particular, how ageing with a disability creates specific disadvantages which need to be addressed.

The information presented at the meeting showed that there is still much to learn from thalidomide, both from its complex history and its impact on peoples’ lives today. For thalidomide survivors, the origi- nal impairments caused by the drug are being compounded by the consequences of a lifetime of living with a rare dis- ability, and early onset age-related health problems. Their health and functioning is changing, and this has profound implications for their quality of life and need for health and social care services.

View the full published article here:

Legacy of Thalidomide Meeting Report 2017

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Health and Wellbeing

Aims

In 2015 the Thalidomide Trust invited all beneficiaries to take part in a survey to find out about their current health and wellbeing, any problems they are currently facing and any (other) challenges they expect in the future.  A massive three-quarters (75%) of beneficiaries replied to the survey. This means we can be confident the survey gives an accurate picture of their current situation and future anxieties. Overall, we now have a detailed picture of the challenges involved in growing older with Thalidomide damage.

What was found

A survey of all 467 beneficiaries took place to find out about their current health and wellbeing, any problems currently faced and challenges expected in the future. 75% responded to the survey giving a detailed picture of the challenges involved in growing older with Thalidomide damage.

The following issues were explored:

  • Health problems
    • physical health
    • mental health
    • hearing, sight, dental and other health problems
  • Health and social care services
    • Use of health services in the past ten years
    • Access to health services
    • Use of social care services
  • Health related quality of life and mental wellbeing
  • Homes and cars
  • Work and pensions
  • Concerns for the future

The evidence compiled was used to develop the Trusts' own services and identify topics that the Trust may need to investigate further. In addition it was sent to the Departments of Health in England, Scotland, Wales and Northern Ireland. This will demonstrate to the Health Departments how beneficiaries continue to experience growing health problems and how important the Health Grant is in helping meet at least some of their extra needs for services, special housing and mobility.

View a summary of the survey results and the full published report here:

Health and Wellbeing Report Summary

Health and Wellbeing Full Report 2016

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Health, Quality of Life and Employment among Thalidomide-affected People

Aims

There is growing evidence, both here in the UK and internationally, that Thalidomide survivors are experiencing an increasing number of Thalidomide-related health problems as they age. It is also costing people more to live with these problems. The new ten year (2013 – 2022) Health Grant funded by the Health Departments in England, Scotland, Wales and Northern Ireland, is now in place. For many people it will be central in helping them to manage their changing health needs and maintain their quality of life.

This research aims to gather details of the health-related quality of life and employment situations of all Thalidomide survivors in the UK, including an indication of how they spend their Health Grant.

The research was commissioned by the UK Thalidomide Trust and carried out by Firefly Research.

What was found

There were two parts to the research – a survey of the health-related quality of life and employment situations of all Thalidomide-affected people in the UK; and in depth telephone interviews with around 50 Thalidomide- affected people.

The findings were summarised into the main areas:

  • Health related quality of life
  • Thalidomide related health problems
    • Reduced flexibility and mobility
    • Pain and stiffness
    • Tingling and numbness
    • Mental and emotional health
  • Employment
  • Concerns about the future
  • Ten year Health Grant - current use

View a summary of the survey results and the full published report here:

Health Quality of Life Employment Summary Report

Health, Quality of Life and Employment amongst Thalidomide-affected People – Evidence from the UK

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Evaluation of the Health Grant to Thalidomide-Impaired People

Aims

The Trust commissioned Firefly in 2010 to undertake a three year study to provide evidence of the impact of the Health Grant on the health and well-being of individual thalidomide-affected people in the U.K.

The evaluation began in May 2010 and ran for three years until summer 2013. Its main aims were to:

1)  Provide evidence of the impact of the grant on the health and well-being of individual Thalidomiders
2)  Assess how the provision of the Health Grant has (or may have) enabled individual Thalidomiders to reduce or avoid predicted future health needs
3)  Bring together the learning from the evaluation to support a decision on whether and how to create a permanent scheme after the current three-year pilot has ended
4)  Examine the effectiveness of working through a national organisation to meet the needs of other geographically dispersed groups with highly specialised needs

What was found

There are two main parts to the evaluation – a review of the operation of the Health Grant scheme which took place in the first and last years of the evaluation and an in-depth study of the experiences of 60 Thalidomide-impaired people (the ‘study group') of using their Health Grants, which ran across all three years.

The key conclusions are summarised:

Over the three years of the Health Grant evaluation a number of clear themes have emerged. The final year of the evaluation has confirmed and developed them, as well as highlighting wider issues about the potential of the Health Grant ‘model’ for addressing the health needs of other groups of people with rare conditions or specialist needs.

Thalidomide-impaired people are experiencing deterioration in their health. In the final year of the evaluation, concerns about further deterioration and new or additional health problems were again evident.

For many people the things they had been able to do, or the lifestyle changes they had been able to make, as a result of the Health Grant, were helping to either slow down this deterioration or at least enable people to manage it. People felt the impact of the Health Grant had been overwhelmingly positive, even “life changing”.

View the full published reports for all 3 years here:

Health Grant Evaluation Report 3 2013

Health Grant Evaluation Report 2 2012

Health Grant Evaluation Report 1 2011

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Securing Our Future: the disability and health costs of UK thalidomide-affected people

Aims

This study of 80 thalidomide-affected people living in the UK identifies the health problems they were experiencing, the implications for daily living and the costs associated with meeting their increased health needs. It reveals a significant gap in the funding available to meet their needs.

What was found

Thalidomiders are now experiencing premature, excessive, painful and debilitating wear and tear on their bodies after 50 years of having to use them in extraordinary ways to compensate for missing, shortened or malformed limbs and organs – damage which has been compounded by their inability to invest in their special needs through lack of funds.

The Securing our Future (SOF) study, initiated and managed by thalidomiders, collected data on and investigated the financial costs of living with disabilities caused by thalidomide, over and above the general costs of living.

Over a 2-year period (2010-2012) 80 of the 430 or so UK-born thalidomiders recorded their costs of coping with their thalidomide disability.

The headline finding is that an average thalidomider spends £40,594 per annum on needs directly attributable to thalidomide disabilities, and that for many, there is still a gap in their ability to invest in their real needs.

Never before have the true financial costs of thalidomide been calculated – costs that thalidomiders live with every day due to the damage caused 50 years ago. The evidence from this study is that the ever-increasing cost of trying to stay mobile, independent and healthy, combined in many cases with the cost of reduced family income, has resulted in the financial cost of thalidomide-related disabilities increasing year on year.

View the full published report here:

Securing our Future: the disability and health costs of UK thalidomide-affected people

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Loss of Earnings and Pensions among UK Thalidomide Survivors

Aims

The beneficiaries of the UK Thalidomide Trust, now in their 50s, are experiencing consequential Thalidomide damage that is having an increasingly severe effect on their working lives, incomes and future pensions.

This report provides detailed evidence of the extensive challenges experienced by beneficiaries of the UK Thalidomide Trust in sustaining paid work and careers as they experience rapidly increasing health problems; and of the earnings and pensions entitlements they have consequently lost or foregone.

What was found

A representative survey of UK Thalidomide survivors shows that consequential damage has forced three out of five to change their work situations since 2000; at that time they were in their early 40s, some 25 years before statutory retirement age.

The survey looks at the following issues related to this fact:

  • Changes in work status
  • Impact on earnings
  • Impact on pensions
  • Relationships between work and health
  • Future work plans
  • The impact of Thalidomide on family members employment and earnings
  • Lifetime discrimination

View the executive summary report and full published reports here:

Executive Summary Loss of Earnings Report 2016

Loss of Earnings Report 2016

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