Health outcomes for children with neurodisability: what do professionals regard as primary targets?

Janssens, Astrid; Williams, Jane; Tomlinson, Richard; Logan, Stuart; Morris, Christopher

doi:10.1136/archdischild-2013-305803

Cited by 19 publications

(16 citation statements)

References 19 publications

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“…To undertake this work we would aim to continue to incorporate the opinions of key players (experts, families, parents, caregivers and patients). This approach has recently been undertaken successfully in the UK [38, 39]. This paper highlights the value of including patients and the public in the process, particular in a developing country setting where this has been rarely done.…”

Section: Discussionmentioning

confidence: 99%

Exploring neurodevelopmental outcome measures used in children with cerebral malaria: the perspectives of caregivers and health workers in Malawi

et al. 2017

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BackgroundProgress has been made in tackling malaria however there are still over 207 million cases worldwide, the majority in children. As survival rates improve, numbers of children with long-term neurodisabling sequelae are likely to increase. Most outcome studies in cerebral malaria (CM) have focused only on body function and structure and less on outcomes within the broader framework of the International Classification of Functioning and Disability (ICF). The aim of this study was to utilise qualitative methods to identify relevant clinical outcomes in CM to support formulation of a core outcome set relevant to CM and other acquired brain injuries for use in future clinical trials.MethodsIn depth interviews with parent/caregivers (CGs) of children with/without previous CM (N = 19), and in depth interviews with health professionals (N = 18) involved in their care were conducted in community and clinical settings in and around Blantyre, Malawi. Interviews were audio taped, transcribed, translated and a thematic content analysis was conducted. Themes were categorised and placed firstly in an iterative framework derived from the data but then within the ICF framework.ResultsOutcomes perceived as important to carers and professionals fulfilled each level of the ICF. These included impairment in body function and structure (contractures, impaired mobility, visual problems, seizures, cognitive function and feeding); activity and participation outcomes (learning, self-care, relationships in school, play and activities of daily living). Other issues emerging included the social and emotional implications of CM on the family, and balancing care of children with neurodisability with demands of daily life, financial pressures, and child protection. Themes of stigma and discrimination were described; these were perceived to negatively influence care, participation and integration of carer and child into the community.ConclusionsOutcomes considered important for parents/caregivers and professionals working with children post CM cross all aspects of the ICF framework (impairment, functioning and participation). Outcomes emphasised by families and carers in cross-cultural settings must be given adequate attention when conducting clinical studies in these settings.Electronic supplementary materialThe online version of this article (doi:10.1186/s12887-016-0763-y) contains supplementary material, which is available to authorized users.

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Section: Discussionmentioning

confidence: 99%

Exploring neurodevelopmental outcome measures used in children with cerebral malaria: the perspectives of caregivers and health workers in Malawi

et al. 2017

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“…77,83 Concept elicitation and illness experience studies highlight pain control as a priority in cancer and noncancer disease groups. 19,27,45,51,74,76,91,92 Other commonly reported physical symptoms are lack of energy, nausea, vomiting, dry mouth, weight loss, and drowsiness 78,85,93-95 27,43,52,85,93,94,96-98 . Symptoms associated with severe distress during cancer treatment include difficulty in swallowing and shortness of breath.…”

Section: Physical Symptoms and Concernsmentioning

confidence: 99%

“…43,46,57 Studies that address concerns in neuro-disability and, particularly, the one on the development of the suffering scale in adolescents with cancer, prioritised physical symptoms and associated distress as core domains, which should be included in outcome measures for young people with LLC. 27,74 It is noticed that children tend to use unique language to describe their symptoms and, at times, have difficulty explaining their feelings. 106 62,107 T and has been interpreted as a form of denial, lack of specific symptoms, or unchanged health status.…”

Section: Physical Symptoms and Concernsmentioning

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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“…Through reference searches of the included papers an additional seven papers [16–22] were identified as part of the included COS development exercises. Of these, four [16, 19, 21, 22] were not archived on COMET at the point of the final search and three [17, 18, 20] papers were not returned in the initial search because they did not include patients or carers as participants; however, they described part of a COS pathway which included patient or carers reported in a separate publication.…”

Section: Resultsmentioning

confidence: 99%

A review of patient and carer participation and the use of qualitative research in the development of core outcome sets

Jones

Keeley

et al. 2017

PLoS ONE

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BackgroundTo be meaningful, a core outcome set (COS) should be relevant to all stakeholders including patients and carers. This review aimed to explore the methods by which patients and carers have been included as participants in COS development exercises and, in particular, the use and reporting of qualitative methods.MethodsIn August 2015, a search of the Core Outcomes Measures in Effectiveness Trials (COMET) database was undertaken to identify papers involving patients and carers in COS development. Data were extracted to identify the data collection methods used in COS development, the number of health professionals, patients and carers participating in these, and the reported details of qualitative research undertaken.ResultsFifty-nine papers reporting patient and carer participation were included in the review, ten of which reported using qualitative methods. Although patients and carers participated in outcome elicitation for inclusion in COS processes, health professionals tended to dominate the prioritisation exercises. Of the ten qualitative papers, only three were reported as a clear pre-designed part of a COS process. Qualitative data were collected using interviews, focus groups or a combination of these. None of the qualitative papers reported an underpinning methodological framework and details regarding data saturation, reflexivity and resource use associated with data collection were often poorly reported. Five papers reported difficulty in achieving a diverse sample of participants and two reported that a large and varied range of outcomes were often identified by participants making subsequent rating and ranking difficult.ConclusionsConsideration of the best way to include patients and carers throughout the COS development process is needed. Additionally, further work is required to assess the potential role of qualitative methods in COS, to explore the knowledge produced by different qualitative data collection methods, and to evaluate the time and resources required to incorporate qualitative methods into COS development.

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Health outcomes for children with neurodisability: what do professionals regard as primary targets?

Abstract: This Delphi survey identified nine key domains that provide a professional perspective on a core set of outcomes for evaluating services for children and young people with neurodisability.

Cited by 19 publications

References 19 publications

Exploring neurodevelopmental outcome measures used in children with cerebral malaria: the perspectives of caregivers and health workers in Malawi

Exploring neurodevelopmental outcome measures used in children with cerebral malaria: the perspectives of caregivers and health workers in Malawi

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

A review of patient and carer participation and the use of qualitative research in the development of core outcome sets

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