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THE JAMES LIND ALLIANCE

Tackling treatment uncertainties together

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Research Priorities: top 10s

This page lists the top 10 research priorities, shared by patients, carers and clinicians, for each completed JLA Priority Setting Partnership.

1a. What are the adverse effects associated with long term use of short and long actingbronchodilators; inhaled and oral steroids; and combination and additive therapies in adults? (N.B this includes children aged 12 years old and over)

1b. What are the adverse effects associated with long term use of short and long acting bronchodilators; inhaled and oral steroids; and combination and additive therapies in children?

2. What is the most effective way of managing asthma with other health problems?

3. What are the key components of successful "Self Management" for a person with asthma?

4. What is the most effective strategy to educate people with asthma and health professionals about managing the adverse effects of drug therapies?

5. What is the most effective way of managing asthma triggers?

6. What is the role of complementary therapies in asthma management?

7. What are the benefits of breathing exercises as a form of physical therapy for asthma?

8. What type of patient (children and adults) and health professional education is most effective in gaining asthma control?

9. What is the most effective way to manage consultations and asthma control in adolescence and young people?

10. Psychological interventions for adults with asthma?

For more information on the Asthma Partnership, click here.

1. What types of psychological intervention (individual therapy, community or school based) and at what time (from diagnosis to adulthood) are most helpful for patients with a cleft of the lip and/or palate and their families?

2. What are the educational, employment and personal (eg relationships) outcomes for individuals with a cleft of the lip and/or palate during childhood, adolescence and in the long term?

3. What is the best protocol for primary repair of both the lip and palate, including technique/timing and sequence?
4. In individuals with a cleft of the lip and/or palate when is the most effective age to begin speech therapy?

5. What is the best treatment for otitis media with effusion (glue ear) in individuals with a cleft of the lip and/or palate?

6. Can stem cells be used to improve palate repair (both primary and secondary)?

7. What interventions would enhance the educational outcomes for children with a cleft of
the lip and/or palate?

8. What is the impact of having a baby born with a cleft of the lip and/or palate on maternal/child attachment?

9. What is the best way to manage infants with a cleft of the lip and/or palate undergoing primary surgery before, during and after hospital Eg. Fluids, pain control, antibiotics, probiotics, arm splints, feeding practices?

10. What are the genetic and environmental causes of clefts of the lip and/or palate?

11. How can we improve the diagnosis of cleft palate (without cleft lip)?

12. What is the best way to prevent tooth decay in children with a cleft of the lip and/or palate?

1. What is the optimal process for GP education and training for improved diagnosis and management of balance disorders?

2. What is the best way of training health professionals in the management of balance disorders?

3. What is the most effective treatment for Vestibular migraine?

4. What are the best interventions to improve balance/minimise symptoms in daily activities such as supermarkets, escalators etc.?

5. Is any specific surgical intervention effective in Ménière's disease and what procedure is best?

6. Are there any effective interventions for the ear pressure symptoms in Ménière's disease?

7. What is the optimum pharmacological strategy for the management of patients with Ménière's disease? In particular, what are the effects of betahistine (including long term effects)?

8. Is it helpful in preventing the severity, frequency and progression of attacks of Ménière's disease to adopt a specific diet, or restrict salt, caffeine or fluid intake?

9. Are the home-based exercises given to patients with balance disorders effective?

10. Are stress management techniques helpful in patients with balance disorders?

For more information on the Balance Partnership, click here.

Shared Priorities:

What is the best and safest way of using topical steroids for eczema: frequency of application, potency, length of time, alternating with other topical treatments, and age limits for treatment?

What is the long term safety of applying steroids to the skin for eczema?

What role might food allergy testing play in treating eczema?

Which emollient is the most effective and safe in treating eczema?

Patient and Carer Priorities:

What is the best psychological treatment for itching/scratching in eczema?

Which is the best way for people with eczema to wash: frequency of washing, water temperature, bath versus shower?

What are the best and safest natural products to apply to the skin for eczema?

How much does avoidance of irritants and allergens help people with eczema?

What is the role of diet in treating eczema: exclusion diets and nutritional supplements?

Healthcare Professional Priorities:

Which is more effective in the management of eczema: education programmes, GP care, nurse-led care, dermatologist-led care or multi-disciplinary care?

Which is safer and more effective for treating eczema: steroids or calcineurin inhibitors?

How effective are interventions to reduce skin infections in the management of eczema?

Which should be applied first when treating eczema, emollients or topical steroids?

What is the best and safest way of using drugs that suppress the immune system when treating eczema?

• What is the best treatment for children and adults presenting with a) early Lyme disease without neurological involvement and not including erythema migrans and b) late Lyme disease of any manifestation? To include consideration of drug(s), dose, duration.

What key questions (clinical and epidemiological) should be considered to help make a diagnosis of Lyme disease in children and adults in the UK and would a weighting table be useful?

How effective are the current UK tests in detecting infections due to the genospecies and strains of B burgdorferi sl in the UK and which single test and what combination of tests performs best in diagnosing or ruling out active Lyme disease. Should stage of the disease and patient age be taken into account when interpreting these tests?

What are the outcomes of cases where long term treatment has been used?

What is the optimal course of action if symptoms relapse after a treatment course is finished?

What is the optimal course of action if symptoms persist after initial treatment: should antibiotic treatment be continued until all symptoms have resolved or should a different dose or different antibiotic be used and what is the course of action if treatment appears to fail completely?

Are continuing symptoms following conventional recommended treatment due to continued infection, or an immune response or other process?

How common is relapse and treatment failure and is it related to disease stage, gender, co-infections or any other factor?

Are there long-term consequences if treatment is delayed?

Can Lyme be transmitted via other means: person to person sexually, transplacentally or by breast feeding; through organ donation; through blood transfusion?

1. How effective is repositioning in the prevention of pressure ulcers?

2. How effective at preventing pressure ulcers is involving patients, family and lay carers in patient care?

3. Does the education of health and social care staff on prevention lead to a reduction in the incidence of pressure ulcers and, if so, which are the most effective education programmes (at organisational and Health/Social Care level)?

4. What is the relative effectiveness of the different types of pressure relieving beds, mattresses, overlays, heel protectors and cushions (including cushions for electric and self-propelling wheelchairs) in preventing pressure ulcers?

5. What impact do different service models have on the incidence of pressure ulcers including staffing levels, continuity of care [an on-going relationship with same staff members] and the current organisation of nursing care in hospitals?

6. What are the best service models (and are they sufficiently accessible) to ensure that patients with pressure ulcers receive the best treatment outcomes (including whether getting people with pressure ulcers and their carers more involved in their own pressure ulcer management improves ulcer healing and if so, the most effective models of engagement)?

7. For wheelchair users sitting on a pressure ulcer, how effective is bed rest in promoting pressure ulcer healing?

8. How effective are wound dressings in the promotion of pressure ulcer healing?

9. Does regular turning of patients in bed promote healing of pressure ulcers?

10. Does improving diet (eating) and hydration (drinking) promote pressure ulcer healing?

11. How effective are surgical operations to close pressure ulcers?

12. How effective are topical skin care products and skin care regimes at preventing pressure ulcers?

1. How can over-treatment for prostate cancer be prevented by indentifying and excluding the treatment of harmless tumours?

2. Is there a genetic marker for prostate cancer that would be both more sensitive and more specific than PSA serum level?

3. What can be done to delay or prevent the onset of hormone independent prostate cancer?

4. Are there any dietary measures that can prevent prostate cancer or slow its progression?

5. Does serial PSA measurement in patients with prostate cancer accurately monitor disease progression?

6. Would prostate cancer screening targeted at high risk groups, i.e. those with positive family history, and ethnic minorities with higher rates, improve the outcomes of treatment in these groups?

7. Does active surveillance work for treatment of prostate cancer?

8. Is there a vaccine that can prevent prostate cancer?

9. Do variations in GP awareness of prostate cancer affect outcomes?

10. Are there any non-intrusive diagnostic tests that will identify aggressive prostate cancers whilst not identifying harmless cancers?

11. What is the effectiveness of new treatments for prostate cancer such as High Intensity Focused Ultrasound (HIFU) and Cryotherapy?

For more information on the Prostate Cancer Partnership, click here.

1. What is the best way to treat people with schizophrenia that is unresponsive to treatment?

2. What training is needed to recognize the early signs of recurrence?

3. Should there be compulsory community outpatient treatment for people with severe mental disorders?

4. How can sexual dysfunction due to antipsychotic-drug therapy be managed?

5. What are the benefits of supported employment for people with schizophrenia in terms of quality of life, self esteem, long-term employment prospects and illness outcomes?

6. Do the adverse effects of antipsychotic drugs outweigh the benefits?

7. What are the benefits of hospital treatment compared with home care for psychotic episodes?

8. What are the clinical benefits and cost-effectiveness of monitoring the physical health of people with schizophrenia?

9. What are the clinical, social and economic outcomes — including quality of life and the methods and effects of risk monitoring — of treatment by acute day hospitals, assertive outreach teams, in-patient units, and crisis resolution and home treatment teams?

10. What interventions could reduce weight gain in schizophrenia?

For more information on the Schizophrenia Partnership, click here.

1. What are the best ways to improve cognition after stroke?

2. What are the best ways of helping people come to terms with the long term consequences of stroke?

3. What are the best ways to help people recover from aphasia?

4. What are the best treatments for arm recovery and function, including visual feedback, virtual reality, bilateral training, repetitive task training, imagery/mental practice, splinting, electromechanical and robot-assisted arm training and botulinum toxin.

5. What are the best ways to treat visual problems after stroke?

6. What are the best ways to manage and/or prevent fatigue?

7. What are the best treatments to improve balance, gait and mobility, including physiotherapy, gait rehabilitation, visual and auditory feedback, electrical stimulation, different types of ankle foot orthoses and electromechanical assisted gait training?

8. How can stroke survivors and families be helped to cope with speech problems?

9. What are the best ways to improve confidence after stroke, including stroke clubs/groups, offering support, one-to-one input and re-skilling?

10. Are exercise and fitness programmes beneficial at improving function and quality of life and avoiding subsequent stroke?

For more information on the Stroke Partnership, click here

  • What management strategies are more effective than a usual model of audiological care in improving outcomes for people with tinnitus?
  • Is Cognitive Behaviour Therapy (CBT), delivered by audiology professionals, effective for people with tinnitus? Here comparisons might be with usual audiological care or CBT delivered by a psychologist.
  • What management strategies are more effective for improving tinnitus-related insomnia than a usual model of care?
  • Do any of the various available complementary therapies provide improved outcome for people with tinnitus compared with a usual model of care?
  • What type of digital hearing aid or amplification strategy provides the most effective tinnitus relief?
  • What is the optimal set of guidelines for assessing children with tinnitus?
  • How can tinnitus be effectively managed in people who are Deaf or who have a profound hearing loss?
  • Are there different types of tinnitus and can they be explained by different mechanisms in the ear or brain?
  • What is the link between tinnitus and hyperacusis (over-sensitivity to sounds)?
  • Which medications have proven to be effective in tinnitus management compared with placebo?

The following question was carefully deliberated and just fell outside of the top ten, however participants in the final meeting felt it was worthy of a special mention:

  • Does stem cell technology (e.g. for hair cell regeneration) provide an effective pipeline to develop new medical interventions for treating

Overarching research aspiration: An effective cure for type 1 diabetes

1. Is it possible to constantly and accurately monitor blood sugar levels, in people with type 1 diabetes, with a discrete device (non-invasive or invasive)

2. Is insulin pump therapy effective? (immediate v deferred pump, and comparing outcomes with multiple injections)

3. Is an artificial pancreas for type 1 diabetes (closed loop system) effective?

4. What are the characteristics of the best type 1 diabetes patient education programmes (from diagnosis to long term care) and do they improve outcomes?

5. What are the cognitive and psychological effects of living with type 1 diabetes?

6. How can awareness of and prevention of hypoglycaemia in type 1 diabetes be improved?

7. How tightly controlled do fluctuations in blood glucose levels need to be to reduce the risk of developing complications in people with type 1 diabetes?

8. Does treatment of type 1 diabetics by specialists (e.g. doctors, nurses, dieticians, podiatrists, ophthalmologists and psychologists) trained in person-centred skills provide better blood glucose control, patient satisfaction and self-confidence in management of type 1 diabetes, compared to treatment by non specialists with standard skills?

9. What makes self management successful for some people with type 1 diabetes, and not others?

10. Which insulins are safest and have the fewest long term adverse effects?

For more information about the Type 1 Diabetes Partnership, click here.

1. What are the optimal pelvic floor muscle training protocols (frequency and duration of therapy) for the treatment of different patterns of urinary incontinence?

2. Can guidance or training for general practitioners on appropriate pathways of care improve the management of patients with urinary incontinence?

3. What is best practice for the treatment of combined stress urinary incontinence and detrusor overactivity?

4. What catheter regimens are most effective in preventing urinary tract infections in patients using intermittent self-catheterisation for the management of a neurogenic bladder?

5. Which treatment is most effective for the reduction of urinary frequency and urgency?

6. Is urodynamic testing prior to surgery for urinary incontinence associated with better continence rates and quality of life than surgery indicated without such testing?

7. What is best practice for the management of stress urinary incontinence following failed tension free vaginal tape surgery?

8. What are the most effective treatments of daytime urinary incontinence in children?

9. Are disposable catheters more or less acceptable than reusable catheters in terms of effective bladder management, patient experience and urinary tract infections?

10. In women with prolapse (symptomatic or asymptomatic) and SUI, should suburethral tapes be inserted at the same time as repairing the prolapse?

For more information about the Urinary Incontinence Partnership, click here.

1. How effective are systemic immunosuppressants in treating vitiligo?

2. How much do psychological interventions help people with vitiligo?

3. Which treatment is more effective for vitiligo: light therapy or calcineurin inhibitors?

4. How effective is ultraviolet B therapy when combined with creams or ointments in treating vitiligo?

5. What role might gene therapy play in the treatment of vitiligo?

6. How effective are hormones or hormone-related substances that stimulate pigment cells (melanocyte-stimulating hormone analogues, afamelanotide) in treating vitiligo?

7. Which treatment is more effective for vitiligo: calcineurin inhibitors or steroid creams/ointments?

8. Which treatment is more effective for vitiligo: steroid creams/ointments or light therapy?

9. How effective is the addition of psychological interventions to patients using cosmetic camouflage for improving their quality of life?

10. How effective is pseudocatalase cream (combined with brief exposure to ultraviolet B) in treating vitiligo?

In addition, two treatment uncertainties were suggested as ‘ones to watch’, as these interventions were still in an early investigative stage.

11. How effective is piperine (black pepper) cream in treating vitiligo?

12. What role might stem cell therapy play in treating vitiligo?

More more information on the Vitiligo Partnership, click here.



Copyright 2013 James Lind Alliance