The under reporting of recruitment strategies in research with children with life-threatening illnesses: A systematic review

Hudson, Briony; Oostendorp, Linda; Candy, Bridget; Vickerstaff, Victoria; Jones, Louise; Lakhanpaul, Monica; Bluebond-Langner, Myra; Stone, Patrick

doi:10.1177/0269216316663856

Cited by 39 publications

(44 citation statements)

References 239 publications

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“…Of the 281 families contacted and eligible, 71 (25%) participated. This participation rate is consistent with a systematic review of recruitment strategies in research with children with life-threatening illnesses (Hudson et al 2017). …”

Section: Methodssupporting

confidence: 87%

Surviving Siblings’ Illnesses, Treatments/Health Services over 13 Months after a Sibling’s Death

et al. 2018

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Two million children experience sibling death annually and have problems that require clinical intervention although few receive such help. Effects on surviving siblings’ mental health has been well documented, however their physical health has not. This study described surviving siblings’ illnesses, treatments/health services at 2, 4, 6, and 13 months post-sibling death. The 132 children (76 girls, 56 boys, M 10.6 years, SD 3.43); 30% Hispanic, 51% Black, 26% White were recruited via hospital ICUs and published obituaries. Using a longitudinal design, parents reported types and numbers of surviving siblings’ illnesses, treatments/health services, and dates post-sibling death. Most of the 207 illnesses and 674 treatments/health services occurred in the first 6 months post-sibling death. While girls had more illnesses (131) than boys (76) and Hispanic children had more illnesses than White or Black children, these differences were not statistically significant. Girls accounted for 66% of the treatments/health services and boys 34%. There was no significant difference in treatments/health service use by gender of the children (F = 1.00, p = .32). Hispanic children had significantly more treatments/health service use than Black children (F = 6.81, p = .002). Sibling death affects surviving siblings’ physical health. Study data document the importance of monitoring the health, treatments and health service use of surviving siblings especially in the first 6 months after a sibling death, regardless of the child’ s gender. On average, Hispanic children had greater health service use, which may warrant greater attention.

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Section: Methodssupporting

confidence: 87%

Surviving Siblings’ Illnesses, Treatments/Health Services over 13 Months after a Sibling’s Death

et al. 2018

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“…Furthermore, some studies did not report the recruitment strategies and as such potential bias could not be assessed, compromising our judgement regarding the methodological quality of the studies included. 157 Many conditions require palliative care and different terminologies are used in different settings and consequently relevant articles may not have been identified. 154…”

Section: Strengths and Limitationsmentioning

confidence: 99%

Symptoms and Concerns Among Children and Young People with Life-Limiting and Life-Threatening Conditions: A Systematic Review Highlighting Meaningful Health Outcomes

Namisango

Bristowe

Allsop

et al. 2018

Patient

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Background: The design and provision of quality paediatric palliative care should prioritize issues that matter to children and their families, for optimal outcomes. Aim: This review aims to identify symptoms concerns and outcomes, that matter to children and young development of a relevant framework of health outcomes. Study Design: This is a systematic literature review across multiple databases for identification of eligible primary evidence. Data sources: Data sources such as PsychINFO, Medline, EMBASE, CINAHL, OpenGrey, and Science Direct Journals have been searched from 1 August 2016 to 30th July 2017. The study also incorporates consultations with experts in the field, citation searchers via Scopus, and a hand search for reference lists of included studies. Results: Out of the 13,567 articles that have been evaluated, 81 studies were included. Of these, (n=68) are from high-income countries and (n=58) are cancer patients studies. A total of 3,236 young people, 2,103 family carers, 108 families, and 901 healthcare providers are included in the studies. Young people have not contributed to data in 30% of studies. Themes on priority concerns are presented by domain and health outcome; for example, 1) Physical (n=62 studies); e.g. physical symptoms, 2) psychological (n=65); e.g. worry 3) psycho-social (n=31); e.g. relationships, 4) existential Conclusion: Burdensome symptoms and concerns affect young people with malignant and nonmalignant conditions and occur across the disease trajectory, so paediatric palliative care should not be limited to the end of life phase. A child-family centred framework of health outcomes, spanning the patient, family, and quality of service levels is proposed to inform service development. Future

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“…This is even more true for pediatric trials recruiting infants. Recruitment strategies [ 10 ] and participant characteristics that predict recruitment are rarely reported [ 11 ]. For preventive trials in asymptomatic children the problem of slow recruitment seems to be even more evident [ 12 ] but not much information is available on this topic.…”

Section: Introductionmentioning

confidence: 99%

Recruiting young pre-symptomatic children for a clinical trial in type 1 diabetes: Insights from the Fr1da insulin intervention study

Kick

Assfalg

Aydin

et al. 2018

Contemporary Clinical Trials Communications

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BackgroundAlthough detection of children at high risk of developing type 1 diabetes and diagnosis of early stages is possible, up to now there exists no approved therapy to delay or prevent type 1 diabetes. Thus it is vital to develop evidence-based interventions. For this a sufficient number of trial participants is crucial but difficult to obtain especially in asymptomatic children.AimIdentifying family characteristics that lead to or impede trial participation and analyze reasons stated by families for non-participation.MethodsParticipants for the Fr1da Insulin Intervention study are recruited from the Fr1da study, a population based screening for early stage type 1 diabetes in Bavaria. Families with eligible children were invited to enroll. We analyzed sex and age of the child, distance of the family to the study center in Munich and the existence of a first degree family member with type 1 as possible influential factors for study participation. We also analyzed reasons stated by families who declined study participation in a phone interview.ResultsOf 146 eligible children 77 (53%) were enrolled into the trial. None of the tested family characteristics differed significantly between the enrolling and the families not participating, but in general enrolling families lived closer to the study site than families not participating. This is also reflected in the reasons given by non-participating families. The most frequent reason stated were time restrictions. The second most frequent reason was the venous blood draw.ConclusionThe factors for non-participation identified in this project need be taken into account for the design of future trials in young children to ensure proper recruitment and thus to generate valid results for medical treatment of children. More research on the reason of participation and non-participation in clinical trials is needed.

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The under reporting of recruitment strategies in research with children with life-threatening illnesses: A systematic review

Cited by 39 publications

References 239 publications

Surviving Siblings’ Illnesses, Treatments/Health Services over 13 Months after a Sibling’s Death

Surviving Siblings’ Illnesses, Treatments/Health Services over 13 Months after a Sibling’s Death

Symptoms and Concerns Among Children and Young People with Life-Limiting and Life-Threatening Conditions: A Systematic Review Highlighting Meaningful Health Outcomes

Recruiting young pre-symptomatic children for a clinical trial in type 1 diabetes: Insights from the Fr1da insulin intervention study

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