Interventions for patients and caregivers to improve knowledge of sickle cell disease and recognition of its related complications.


BACKGROUND:Sickle cell disease is a group of genetic diseases which is especially prevalent in tropical and subtropical regions; however, forced migration and ongoing population movement have spread it throughout the world, with estimated birth rates reaching 0.49 per 1000 in the Americas, 0.07 per 1000 in Europe, 0.68 per 1000 in South and Southeast Asia, and 10.68 per 1000 in Africa. Life for individuals with sickle cell disease can be affected by repeated acute complications and compounded by progressive organ damage. Studies reveal that when people with chronic illness learn self-management, their clinical outcomes and quality of life improves; and they show lower dependence on healthcare services. There are, however, no reviews identifying which interventions improve knowledge and little is known about the impact of patient or care-giver knowledge on clinical and psychosocial outcomes in people with sickle cell disease. OBJECTIVES:1. To determine the effectiveness of patient- and caregiver-centred educational interventions for changing knowledge and understanding of sickle cell disease among patients as well as caregivers of people with the disease.2. To assess the effectiveness and safety of patient- and caregiver-centred educational interventions and programs for the recognition of signs and symptoms of disease-related morbidity, adherence to treatment and healthcare utilization in patients with sickle cell disease. SEARCH METHODS:The authors searched the Cochrane Cystic Fibrosis and Genetic Disorders Group Haemoglobinopathies Trials Register, compiled from electronic database searches and handsearching of journals and conference abstract books. Additional trials were sought from the reference lists of the trials and reviews identified by the search strategy.Date of last search: 11 April 2016. SELECTION CRITERIA:Randomized and quasi-randomized controlled trials which evaluate the effectiveness of individual- and group-based interventions for either the patient with sickle cell disease or their caregivers, or both. Eligible interventions will aim to change knowledge, attitudes or skills, improve psychosocial aspects of the disease as well as treatment adherence and healthcare utilization. Trials evaluating the intervention versus no program, comparing two interventions and those which are part of a multi-faceted intervention to improve a range of sickle cell-related health outcomes are all eligible for inclusion. DATA COLLECTION AND ANALYSIS:Two review authors independently selected trials based on stated inclusion criteria and thereafter examined each selected report to extract data using a prepared, piloted, data collection form. A third author assisted in reaching consensus if there were any discrepancies. Similarly, risk of bias was assessed by two authors and verified by a third author. MAIN RESULTS:A total of 12 trials (11 randomized controlled trials and one quasi-randomized trial) of 563 people with HbSS, HbSC or HbSβthal, aged six to 35 years old, were included in the review; the majority of participants were African-American. Interventions ranged from a total of one hour to weekly sessions for eight weeks and the post-intervention assessments ranged from the end of the intervention period to 12 months after completion. The heterogeneity of the included trials, which encompasses setting, inclusion and exclusion criteria, interventional method and time of assessment, ranged from 'not important' to 'moderate to substantial' for different review outcomes. The overall risk of bias was low for selective reporting, unclear for random sequence generation, allocation concealment, blinding of participants and blinding of outcome assessment. Incomplete outcome reporting and blinding of personnel showed mixed bias representations.Patient knowledge was assessed by four trials (160 participants) with moderate to substantial heterogeneity. There was evidence that educational programs improved patient knowledge, standardised mean difference 0.87 points (95% confidence interval 0.28 to 1.45, moderate quality evidence), which improved further when a trial with high bias was removed in a sensitivity analysis. Caregiver knowledge, reported in a single trial of 20 families, also showed an improvement, standardised mean difference 0.52 points (95% confidence interval 0.03 to 1.00, moderate quality evidence). The effect on patient knowledge was sustained at longer follow-up periods, whereas the effect on caregiver knowledge was not sustained.There were two primary outcomes related to the effectiveness of educational programs on the recognition of signs and symptoms of disease-related morbidity. No comparative data were reported for patients or caregivers (or both) recognising signs and symptoms leading to self-management. Data from two trials were analysed for the utilization of health services and showed no evidence of an effect, mean difference 0.33 (95% confidence interval -0.57 to 1.23, moderate quality evidence).With regard to the review's secondary outcomes, depression showed a statistically significant decline in intervention groups, standardised mean difference -0.66 points (95% confidence interval -1.18, to -0.14, moderate quality evidence). Adherence to treatment was not assessed in any of the identified trials. No effects of interventions were seen on coping, family relationships or health-related quality of life of patients.The quality of evidence was low for positive coping and moderate for child knowledge, healthcare utilization and depression. This suggests that further research is likely to have an important impact on our confidence in the estimate of effect and may change the estimates. AUTHORS' CONCLUSIONS:This review identifies important positive effects of educational interventions on improving patient knowledge of sickle cell disease and depression. Effects on patients' knowledge were maintained for longer than for caregivers. The effect on knowledge was significant but small and whether it offers any clinical benefit is uncertain. Significant factors limiting these effects could be trials being under powered as well as attrition rates. Effects were not statistically significant in assessments of secondary outcomes, possibly due to the paucity of the number of trials and patients and caregivers. Trials showed moderate to high heterogeneity which might impact the results. To better study effects on outcomes, further controlled trials are needed with rigorous attention given to improve recruitment and retention and to decrease bias. Predetermined protocols using similar measurements should be used across multiple sites.


Asnani MR,Quimby KR,Bennett NR,Francis DK




Has Abstract


2016-10-06 00:00:00








  • Celecoxib for rheumatoid arthritis.

    abstract:BACKGROUND:Rheumatoid arthritis (RA) is a systemic auto-immune disorder, involving persistent joint inflammation. NSAIDs are used to control the symptoms of RA, but are associated with significant gastro-intestinal toxicity, including a risk of potentially life threatening gastroduodenal perforations, ulcers and bleeds...

    journal_title:The Cochrane database of systematic reviews

    pub_type: 杂志文章,meta分析,评审


    authors: Garner S,Fidan D,Frankish R,Judd M,Shea B,Towheed T,Wells G,Tugwell P

    更新日期:2002-01-01 00:00:00

  • Skin preparation for preventing infection following caesarean section.

    abstract:BACKGROUND:The risk of maternal mortality and morbidity (particularly postoperative infection) is higher for caesarean section (CS) than for vaginal birth. With the increasing rate of CS, it is important to minimise the risks to the mother as much as possible. This review focused on different forms and methods of preop...

    journal_title:The Cochrane database of systematic reviews

    pub_type: 杂志文章,meta分析


    authors: Hadiati DR,Hakimi M,Nurdiati DS,da Silva Lopes K,Ota E

    更新日期:2018-10-22 00:00:00

  • Self-management education and regular practitioner review for adults with asthma.

    abstract:BACKGROUND:A key component of many asthma management guidelines is the recommendation for patient education and regular medical review. A number of controlled trials have been conducted to measure the effectiveness of asthma education programmes. These programmes improve patient knowledge, but their impact on health ou...

    journal_title:The Cochrane database of systematic reviews

    pub_type: 杂志文章,评审


    authors: Gibson PG,Coughlan J,Wilson AJ,Abramson M,Bauman A,Hensley MJ,Walters EH

    更新日期:2000-01-01 00:00:00

  • Pharmacological treatments for psychosis-related polydipsia.

    abstract:BACKGROUND:Polydipsia is the intake of more than three litres of fluids per day. Primary polydipsia occurs when excessive drinking cannot be explained by an identified medical condition, and is not secondary to polyuria. The prevalence of this problem in psychiatric inpatients has been estimated at between 6 and 17%. I...

    journal_title:The Cochrane database of systematic reviews

    pub_type: 杂志文章,评审


    authors: Brookes G,Ahmed AG

    更新日期:2002-01-01 00:00:00

  • Trihexyphenidyl for dystonia in cerebral palsy.

    abstract:BACKGROUND:Cerebral palsy occurs in up to 2.1 of every 1000 live births and encompasses a range of motor problems and movement disorders. One commonly occurring movement disorder amongst those with cerebral palsy is dystonia: sustained or intermittent involuntary muscle spasms and contractions that cause twisting, repe...

    journal_title:The Cochrane database of systematic reviews

    pub_type: 杂志文章,评审


    authors: Harvey AR,Baker LB,Reddihough DS,Scheinberg A,Williams K

    更新日期:2018-05-15 00:00:00

  • Natalizumab for induction of remission in Crohn's disease.

    abstract:BACKGROUND:The pathogenesis of Crohn's disease involves migration of leukocytes into gut tissue and subsequent inflammation. Natalizumab (Tysabri(R), Elan Pharmaceuticals and Biogen Idec) a recombinant humanized IgG4 monoclonal antibody that blocks adhesion and subsequent migration of leukocytes into the gut by binding...

    journal_title:The Cochrane database of systematic reviews

    pub_type: 杂志文章,meta分析,评审


    authors: MacDonald JK,McDonald JW

    更新日期:2007-01-24 00:00:00

  • Nutritional supplementation for hip fracture aftercare in the elderly.

    abstract:BACKGROUND:Fractures of the hip are an important cause of later ill health and mortality in elderly people. People with hip fractures are often malnourished at the time of fracture, and have poor food intake in hospital. OBJECTIVES:This review assesses the effects of nutritional interventions in elderly people recover...

    journal_title:The Cochrane database of systematic reviews

    pub_type: 杂志文章,评审


    authors: Avenell A,Handoll HH

    更新日期:2000-01-01 00:00:00

  • Recombinant factor VIIa for the prevention and treatment of bleeding in patients without haemophilia.

    abstract:BACKGROUND:Recombinant factor VIIa (rFVIIa) is licensed for use in patients with haemophilia and inhibitory allo-antibodies. It is also increasingly being used for off-license indications to prevent bleeding in operations where blood loss is likely to be high, and/or to stop bleeding that is proving difficult to contro...

    journal_title:The Cochrane database of systematic reviews

    pub_type: 杂志文章,meta分析,评审


    authors: Lin Y,Stanworth S,Birchall J,Doree C,Hyde C

    更新日期:2011-02-16 00:00:00

  • Single or double-level anterior interbody fusion techniques for cervical degenerative disc disease.

    abstract:BACKGROUND:The number of surgical techniques for decompression and solid interbody fusion as a treatment for cervical spondylosis has increased rapidly, but the rationale for the choice between different techniques is unclear. OBJECTIVES:The goal of this study was to determine which method of anterior cervical interbo...

    journal_title:The Cochrane database of systematic reviews

    pub_type: 杂志文章,meta分析,评审


    authors: Jacobs WC,Anderson PG,Limbeek J,Willems PC,Pavlov P

    更新日期:2004-10-18 00:00:00

  • Interventions for emergency contraception.

    abstract:BACKGROUND:Emergency contraception (EC) is using a drug or copper intrauterine device (Cu-IUD) to prevent pregnancy shortly after unprotected intercourse. Several interventions are available for EC. Information on the comparative effectiveness, safety and convenience of these methods is crucial for reproductive healthc...

    journal_title:The Cochrane database of systematic reviews

    pub_type: 杂志文章,meta分析,评审


    authors: Cheng L,Che Y,Gülmezoglu AM

    更新日期:2012-08-15 00:00:00

  • Community-based antibiotic delivery for possible serious bacterial infections in neonates in low- and middle-income countries.

    abstract:BACKGROUND:The recommended management for neonates with a possible serious bacterial infection (PSBI) is hospitalisation and treatment with intravenous antibiotics, such as ampicillin plus gentamicin. However, hospitalisation is often not feasible for neonates in low- and middle-income countries (LMICs). Therefore, alt...

    journal_title:The Cochrane database of systematic reviews

    pub_type: 杂志文章,meta分析


    authors: Duby J,Lassi ZS,Bhutta ZA

    更新日期:2019-04-11 00:00:00

  • Rescue high frequency oscillatory ventilation vs conventional ventilation for infants with severe pulmonary dysfunction born at or near term.

    abstract:BACKGROUND:Pulmonary disease is a major cause of mortality and morbidity in term and near term infants. Conventional ventilation (CV) has been used for many years but may lead to lung injury, require the subsequent use of more invasive treatment such as extra corporeal membrane oxygenation (ECMO), or result in death. T...

    journal_title:The Cochrane database of systematic reviews

    pub_type: 杂志文章,评审


    authors: Bhuta T,Clark RH,Henderson-Smart DJ

    更新日期:2001-01-01 00:00:00

  • Screening for colorectal cancer using the faecal occult blood test, hemoccult.

    abstract:BACKGROUND:Colorectal cancer is a leading cause of illness and death in the Western world. In Australia, the United Kingdom and the United States, it is the second commonest cancer for women after breast cancer (age-standardised incidence 22-33 per 100,000), and men after prostate or lung cancer (age-standardised incid...

    journal_title:The Cochrane database of systematic reviews

    pub_type: 杂志文章,评审


    authors: Towler BP,Irwig L,Glasziou P,Weller D,Kewenter J

    更新日期:2000-01-01 00:00:00

  • Corticosteroids as adjuvant to antiviral treatment in Ramsay Hunt syndrome (herpes zoster oticus with facial palsy) in adults.

    abstract:BACKGROUND:Inflammation and oedema of the facial nerve due to viral infection by the herpes zoster virus are implicated in the aetiology and clinical manifestation of Ramsay Hunt syndrome (herpes zoster oticus with facial palsy). Corticosteroids, with their powerful anti-inflammatory effect, have a potential role to pl...

    journal_title:The Cochrane database of systematic reviews

    pub_type: 杂志文章,评审


    authors: Uscategui T,Doree C,Chamberlain IJ,Burton MJ

    更新日期:2008-07-16 00:00:00

  • Continuing education meetings and workshops: effects on professional practice and health care outcomes.

    abstract:BACKGROUND:Educational meetings are widely used for continuing medical education. Previous reviews found that interactive workshops resulted in moderately large improvements in professional practice, whereas didactic sessions did not. OBJECTIVES:To assess the effects of educational meetings on professional practice an...

    journal_title:The Cochrane database of systematic reviews

    pub_type: 杂志文章,meta分析,评审


    authors: Forsetlund L,Bjørndal A,Rashidian A,Jamtvedt G,O'Brien MA,Wolf F,Davis D,Odgaard-Jensen J,Oxman AD

    更新日期:2009-04-15 00:00:00

  • Music during caesarean section under regional anaesthesia for improving maternal and infant outcomes.

    abstract:BACKGROUND:Evidence on the benefits of music during caesarean section under regional anaesthesia to improve clinical and psychological outcomes for mothers and infants has not been established. OBJECTIVES:To evaluate the effectiveness of music during caesarean section under regional anaesthesia for improving clinical ...

    journal_title:The Cochrane database of systematic reviews

    pub_type: 杂志文章,评审


    authors: Laopaiboon M,Lumbiganon P,Martis R,Vatanasapt P,Somjaivong B

    更新日期:2009-04-15 00:00:00

  • Chest radiograph in acute respiratory infections in children.

    abstract:BACKGROUND:Chest radiography is widely used in children with acute lower respiratory infections, but the benefits are unknown. OBJECTIVES:To assess the effects of chest radiography for children with acute lower respiratory infections. SEARCH STRATEGY:The searches were updated in November 2004. We searched the Cochran...

    journal_title:The Cochrane database of systematic reviews

    pub_type: 杂志文章,评审


    authors: Swingler GH,Zwarenstein M

    更新日期:2005-07-20 00:00:00

  • Vitamin supplementation for preventing miscarriage.

    abstract:BACKGROUND:Miscarriage is a common complication of pregnancy that can be caused by a wide range of factors. Poor dietary intake of vitamins has been associated with an increased risk of miscarriage, therefore supplementing women with vitamins either prior to or in early pregnancy may help prevent miscarriage. OBJECTIV...

    journal_title:The Cochrane database of systematic reviews

    pub_type: 杂志文章,meta分析,评审


    authors: Balogun OO,da Silva Lopes K,Ota E,Takemoto Y,Rumbold A,Takegata M,Mori R

    更新日期:2016-05-06 00:00:00

  • Maternal nutrient supplementation for suspected impaired fetal growth.

    abstract:BACKGROUND:One way of attempting to improve fetal growth has been nutrient supplementation for the mother when fetal growth is impaired. Different nutrients such as carbohydrates and amino acids have been suggested as treatments for impaired fetal growth. OBJECTIVES:The objective of this review was to assess the effec...

    journal_title:The Cochrane database of systematic reviews

    pub_type: 杂志文章,评审


    authors: Say L,Gülmezoglu AM,Hofmeyr GJ

    更新日期:2003-01-01 00:00:00

  • Cognitive-behavioural therapy (CBT) interventions for young people aged 10 to 18 with harmful sexual behaviour.

    abstract:BACKGROUND:Around 1 in 1000 adolescents aged 12 to 17 years old display problematic or harmful sexual behaviour (HSB). Examples include behaviours occurring more frequently than would be considered developmentally appropriate; accompanied by coercion; involving children of different ages or stages of development; or as...

    journal_title:The Cochrane database of systematic reviews

    pub_type: 杂志文章,meta分析


    authors: Sneddon H,Gojkovic Grimshaw D,Livingstone N,Macdonald G

    更新日期:2020-06-22 00:00:00

  • Plasma exchange for Guillain-Barré syndrome.

    abstract:BACKGROUND:Guillain-Barré syndrome (GBS) is an acute paralysing disease caused by peripheral nerve inflammation. This is an update of a review first published in 2001 and last updated in 2012. OBJECTIVES:To assess the effects of plasma exchange for treating GBS. SEARCH METHODS:On 18 January 2016 we searched the Cochr...

    journal_title:The Cochrane database of systematic reviews

    pub_type: 杂志文章,meta分析,评审


    authors: Chevret S,Hughes RA,Annane D

    更新日期:2017-02-27 00:00:00

  • Frequency of endotracheal suctioning for the prevention of respiratory morbidity in ventilated newborns.

    abstract:BACKGROUND:Endotracheal suctioning consists of the mechanical aspiration of pulmonary secretions from the endotracheal tube (ETT) to prevent obstruction. The optimal frequency of ETT suctioning has not been defined. OBJECTIVES:To determine the effect of specific ordered frequency of ETT suctioning ('as scheduled') ver...

    journal_title:The Cochrane database of systematic reviews

    pub_type: 杂志文章,评审


    authors: Bruschettini M,Zappettini S,Moja L,Calevo MG

    更新日期:2016-03-07 00:00:00

  • Single dose intra-articular morphine for pain control after knee arthroscopy.

    abstract:BACKGROUND:Knee arthroscopy is a common procedure and is associated with postoperative pain. Intra-articular (IA) injection of morphine for pain control has been widely studied, but its analgesic effect after knee arthroscopy is uncertain. OBJECTIVES:To evaluate the relative effects on pain relief and adverse events o...

    journal_title:The Cochrane database of systematic reviews

    pub_type: 杂志文章,meta分析,评审


    authors: Zou Z,An MM,Xie Q,Chen XY,Zhang H,Liu GJ,Shi XY

    更新日期:2016-05-03 00:00:00

  • Interventions for treating scabies.

    abstract:BACKGROUND:Scabies is an intensely itchy parasitic infection of the skin caused by the Sarcoptes scabiei mite. It is a common public health problem with an estimated global prevalence of 300 million cases. Serious adverse effects have been reported for some drugs used to treat scabies. OBJECTIVES:To evaluate topical a...

    journal_title:The Cochrane database of systematic reviews

    pub_type: 杂志文章,meta分析,评审


    authors: Strong M,Johnstone P

    更新日期:2007-07-18 00:00:00

  • Early enteral nutrition within 24 hours of lower gastrointestinal surgery versus later commencement for length of hospital stay and postoperative complications.

    abstract:BACKGROUND:This is an update of the review last published in 2011. It focuses on early postoperative enteral nutrition after lower gastrointestinal surgery. Traditional management consisted of 'nil by mouth', where patients receive fluids followed by solids after bowel function has returned. Although several trials hav...

    journal_title:The Cochrane database of systematic reviews

    pub_type: 杂志文章,meta分析


    authors: Herbert G,Perry R,Andersen HK,Atkinson C,Penfold C,Lewis SJ,Ness AR,Thomas S

    更新日期:2018-10-24 00:00:00

  • Interventions for cough in cancer.

    abstract:BACKGROUND:Cough is a common symptom in patients with malignancies, especially in patients with lung cancer. Cough is not well controlled in clinical practice and clinicians have few management options to treat it. OBJECTIVES:The primary objective of this review was to determine the effectiveness of interventions, bot...

    journal_title:The Cochrane database of systematic reviews

    pub_type: 杂志文章,评审


    authors: Molassiotis A,Bailey C,Caress A,Brunton L,Smith J

    更新日期:2010-09-08 00:00:00

  • Dietary interventions (plant sterols, stanols, omega-3 fatty acids, soy protein and dietary fibers) for familial hypercholesterolaemia.

    abstract:BACKGROUND:A cholesterol-lowering diet and several other dietary interventions have been suggested as a management approach either independently or as an adjuvant to drug therapy in children and adults with familial hypercholesterolaemia (FH). However, a consensus has yet to be reached on the most appropriate dietary t...

    journal_title:The Cochrane database of systematic reviews

    pub_type: 杂志文章,meta分析,评审


    authors: Malhotra A,Shafiq N,Arora A,Singh M,Kumar R,Malhotra S

    更新日期:2014-06-10 00:00:00

  • Antibiotic therapy for chronic infection with Burkholderia cepacia complex in people with cystic fibrosis.

    abstract:BACKGROUND:Cystic fibrosis (CF) a life-limiting inherited disease affecting a number of organs, but classically associated with chronic lung infection and progressive loss of lung function. Chronic infection by Burkholderia cepacia complex (BCC) is associated with increased morbidity and mortality and therefore represe...

    journal_title:The Cochrane database of systematic reviews

    pub_type: 杂志文章


    authors: Frost F,Shaw M,Nazareth D

    更新日期:2019-06-13 00:00:00

  • Vascular access specialist teams for device insertion and prevention of failure.

    abstract:BACKGROUND:Most people admitted to hospitals worldwide require a vascular access device (VAD). Hundreds of millions of VADs are inserted annually in the USA with reports of over a billion peripheral intravenous catheters used annually worldwide. Numerous reports suggest that a team approach for the assessment, insertio...

    journal_title:The Cochrane database of systematic reviews

    pub_type: 杂志文章,评审


    authors: Carr PJ,Higgins NS,Cooke ML,Mihala G,Rickard CM

    更新日期:2018-03-20 00:00:00

  • Trastuzumab-containing regimens for metastatic breast cancer.

    abstract:BACKGROUND:Patients with breast cancer are classified as having cells that over-express the human epidermal growth factor receptor 2 (known as HER2-positive) or not (HER2-negative). Typically, patients with HER2-positive disease have a worse prognosis. Trastuzumab is a selective treatment that targets the HER2 pathway....

    journal_title:The Cochrane database of systematic reviews

    pub_type: 杂志文章,meta分析,评审


    authors: Balduzzi S,Mantarro S,Guarneri V,Tagliabue L,Pistotti V,Moja L,D'Amico R

    更新日期:2014-06-12 00:00:00