Background Children and their families attending palliative care have not been able to benefit from the use of person-centred outcome measures due to the lack of a valid tool. A key step in tool development and validation is cognitive interviewing, especially for children, for whom appropriate language and format is critical. Aim To adapt the African Children’s Palliative Care Outcome Scale (African C-POS) and establish its comprehensibility, comprehensiveness, relevance, and acceptability. Design: Stage 1: Co-design workshops to refine the C-POS. Stage 2: 3 rounds of cognitive interviews were conducted using 'think aloud' and verbal probing techniques. Setting/participants: Health care providers, academics and commissioners, Children 7–19 years old with life-limiting conditions and parents/carers of children 0->19 years with a life limiting condition, were recruited from three tertiary care centres in Uganda. Results Stage 1: Drawing on existing evidence of priority needs, a stakeholder workshop developed seven versions from the original African C-POS. We added three items to address conceptual gaps on spiritual and psychosocial concerns and to address developmental and cognitive age differences of the children. Response scales were revised to 3 levels for children aged 5–7 years, and 5 levels for other age groups. Stage 2: Cognitive testing, 27 children, 19 proxy family/caregivers and 14 proxy health professionals across the 7 C-POS versions participated in 3 interview rounds. Content, recall times, and length were acceptable. Conclusion Co-design and cognitive interviewing enhanced the face and content validity of the African C-POS. The current versions address the developmental/cognitive age, symptoms, and concerns of children living with life-limiting conditions.
BACKGROUND:To achieve benefits of person-centred outcome measures within routine children's palliative care, implementation plans and the intended pathways to impact must be established. AIM:To develop a Theory of Change and Implementation Plan for sustained implementation of a novel person-centred outcome measure into routine hospital care for children with life-limiting conditions and to identify potential causal mechanisms. DESIGN:Participatory workshops and a directed content analysis developed a Theory of Change. Framework analysis of workshop qualitative workshop data, supported by Normalisation Process Theory Informed an implementation plan. SETTING/PARTICIPANTS:Health and social care professionals and parent/carers were recruited to six online workshops through social media and networks. RESULTS:Eight health and social care professionals and eight parents participated. The Theory of Change identified overall impact of improved care and quality of life, through improved identification of symptoms and concerns and improved communication between healthcare teams. However, for this to happen, education and training on the outcome measure, anticipated benefits, how to implement and use it are required. Logistical, resource and staffing barriers must be addressed, alongside the development of a detailed implementation plan. Analysis of workshop transcripts identified seven themes relating to the domains of Normalisation Process Theory: education and information needs, the importance of a tailored approach, stakeholder engagement and the role of champions, healthcare records and IT system support requirements, improved health outcomes, improved experience of care and evidence for service provision, development, evaluation and expansionConclusion:Future work should pilot test the Theory of Change and Implementation Plan.
BACKGROUND:Globally, over 21 million children need palliative care each year. Although guidelines exist to support paediatric palliative care delivery, they are not informed by the experiences of children themselves. OBJECTIVE:We aimed to determine what constitutes good quality palliative care from the perspectives of children with life-limiting or life-threatening conditions and their parents. METHODS:We analysed semi-structured qualitative interviews using reflexive thematic analysis informed by the European Association for Palliative Care charter of palliative care for children and young people, and Bronfenbrenner's bioecological model. Participants included 26 children aged 5-17 years, and 40 parents of children aged 0-17 years, with a range of cancer and non-cancer diagnoses in nine UK paediatric palliative care services (hospitals and hospices). RESULTS:Quality paediatric palliative care can be both enacted or interrupted across the five domains of the bioecological model. Honest timely communication with the child and family (microsystem), and collaborative relationships between care teams and others in the child's life (mesosystem), are vital. Care experiences are negatively affected by inequities in care provision (exosystems), and society's reluctance to discuss mortality in childhood (macrosystem). Children need to enjoy what matters to them, and maintain social connections, and plan for the future, even if facing a shortened life (chronosystem). CONCLUSIONS:Children and parents are experts in their condition and should be actively involved in care discussions, through communication tailored to the child's pace and preferences, and support advocating for and coordinating care services. Fostering strong and collaborative relationships builds trust and helps children and families to feel safe, included and supported.
Background: Development of a paediatric palliative care child and family centred outcome measure is a priority for health care professionals, researchers and advocates. It is methodologically challenging to develop a measure relevant for such a heterogenous population with complex needs. Involving children in measuring development is vital. Objective: To develop C-POS:UK (Children’s Palliative Care Outcome Scale, UK), a person-centred outcome measure (PCOM) for children with life-limiting conditions and their families, and to test its psychometric properties. Design: Sequential mixed-methods approach to PCOM development, guided by Rothrock’s measure development process and COnsensus-based Standards for the selection of health Measurement Instruments (COSMIN) methodology. Methods: (i) Qualitative interviews about priority symptoms and concerns, with embedded exploration of measure design for children with life-limiting conditions; (ii) systematic review of measure design for children; (iii) modified Delphi survey, and consultation with children, on priority items for new measure; (iv) expert item generation meeting to develop C-POS:UK; (v) cognitive testing to refine C-POS:UK; (vi) psychometric validation. Results: (i) 106 participants described physical, emotional/psychological, spiritual/existential, social and practical concerns. Measure design was discussed by 79 participants comprising preferred response format, recall period and measure administration for children with life-limiting conditions; (ii) systematic review highlighted need for: different versions of measure accounting for child’s developmental stage and cognitive ability; parent/carer involvement as proxies for very young children; and testing to clarify recall periods and response formats at different developmental stages; (iii) Delphi survey: 82 participants (in the first round), with a move towards consensus, but with some differing priorities in stakeholder groups: professionals prioritised physical symptoms, parents prioritised psychosocial and practical matters, while consulted children prioritised normality; (iv) 22 experts contributed to item generation meeting, resulting in five versions of C-POS:UK accounting for child’s developmental stage and cognitive ability, and proxy involvement; (v) 48 participants cognitively tested initial C-POS:UK, informing comprehension, comprehensiveness and acceptability; (vi) psychometric validation is ongoing. Conclusion: A sequential approach informed by Rothrock and COSMIN has supported development of the first version of C-POS:UK. Psychometric validation is underway and will be followed by implementation planning.
Background: The Children’s Palliative Outcome Scale (C-POS) is being developed using best methodological guidance on outcome measure development, This recommends cognitive testing, an established method of item improvement, prior to psychometric testing. Aim: To cognitively test C-POS within the target population to establish comprehensibility, comprehensiveness, relevance and acceptability. Design: Cross-sectional cognitive interview study following COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) methodology and Rothrock guidance on outcome measure development. Cognitive interviews were conducted using ‘think aloud’ and verbal probing techniques. Setting/participants: Children 5–⩽17 years old with life-limiting conditions and parents/carers of children with life-limiting conditions were recruited from 14 UK sites. Results: Forty-eight individuals participated (36 parents; 12 children) in cognitively testing the five versions of C-POS over two to seven rounds. Content and length were acceptable, and all questions were considered important. Refinements were made to parent/carer versions to be inclusive of non-verbal children such as changing ‘share’ to ‘express’ feelings; and ‘being able to ask questions’ to ‘having the appropriate information’. Changes to improve comprehensibility of items such as ‘living life to the fullest’ were also made. Parents reported that completing an outcome measure can be distressing but this is anticipated and that being asked is important. Conclusion: Cognitive interviewing has facilitated refinement of the C-POS, especially for non-verbal children who represent a large proportion of those with a life-limiting condition. This study has enhanced the face and content validity of the measure and provided preliminary evidence for acceptability for use in routine practice.
Background: Children and young people with life-limiting and life-threatening conditions have multidimensional needs and heterogenous cognitive and communicative abilities. There is limited evidence to support clinicians to tailor their communication to each individual child.Aim: To explore the language children and young people use to describe their own condition, to inform strategies for discussing needs and priorities.Design: Positioned within a social constructivist paradigm, a secondary discourse analysis of semi-structured interview data was conducted incorporating the discourse dynamics approach for figurative language.Setting/participants: A total of 26 children and young people aged 5-17 years with life-limiting or life-threatening conditions (6 cancer; 20 non-cancer) were recruited from nine clinical services (six hospitals and three hospices) across two UK nations.Results: The language children and young people use positions them as 'experts in their condition'. They combine medical terminology with their preferred terms for their body to describe symptoms and treatments, and use comparatives and superlatives to communicate their health status. Their language depicts their condition as a 'series of (functional and social) losses', which single them out from their peers as 'the sick one'. Older children and young people also incorporate figurative language to expand their descriptions.Conclusion/discussion: Children and young people can provide rich descriptions of their condition. Paying attention to their lexical choices, and converging one's language towards theirs, may enable more child-centred discussions. Expanding discussions about 'what matters most' with consideration of the losses and differences they have experienced may facilitate a fuller assessment of their concerns, preferences and priorities.
Background: There is a growing evidence-base underpinning implementation of person-centred outcome measures into adult palliative care. However evidence on how best to achieve this with children facing life-threatening and life-limiting conditions is limited. Aim: To identify the anticipated benefits, risks, barriers and facilitators to implementing person-centred outcome measures for children with life-limiting and life-threatening conditions. Design: Cross-sectional qualitative semi-structured interview study with key stakeholders analysed using Framework analysis informed by the adapted-Consolidated Framework for Implementation Research. Setting/participants: A total of n = 26 children with life-limiting or life-threatening conditions, n = 40 parents/carers, n = 13 siblings and n = 15 health and social care professionals recruited from six hospitals and three children’s hospices and n = 12 Commissioners of health services. Results: All participants were supportive of future implementation of person-centred outcome measures into care. Anticipated benefits included: better understanding of patient and family priorities, improved communication and collaborative working between professionals and families and standardisation in data collection and reporting. Anticipated risks included increased workload for staff and measures not being used as intended. Implementation barriers included: acceptability and usability of outcome measures by children; burden and capacity of parents/carers regarding completion; privacy concerns; and language barriers. Implementation facilitators included designing measures using language that is meaningful to children and families, ensuring potential benefits of person-centred outcome measures are communicated to encourage ‘buy-in’ and administering measures with known and trusted professional. Conclusions: Implementation of person-centred outcome measures offer potential benefits for children with life-limiting and life-threatening conditions. Eight recommendations are made to maximise benefits and minimise risks in implementation.
Background: Despite being a core domain of palliative care, primary data on spiritual and existential concerns has rarely been collected among children with life-limiting and life-threatening conditions and their families. Existing evidence has tended to focus on the religious aspects among children with cancer. Aim: To identify the spiritual needs of children with life-limiting and life-threatening conditions. Design: Cross-sectional semi-structured, qualitative interview study with children, families and health and social care professionals. Verbatim transcripts were analysed using Framework analysis Setting/participants: Purposively sampled children with life-limiting and life-threatening conditions, their parents and siblings, health and social care professionals recruited from six hospitals and three children’s hospices in the UK, and commissioners of paediatric palliative care services recruited through networks and a national charity. Results: One hundred six participants were interviewed: 26 children (5–17 years), 53 family members (parents/carers of children 0–17 years and siblings (5–17 years)), 27 professionals (health and social care professionals and commissioners of paediatric palliative care). Themes included: living life to the fullest, meaning of life and leaving a legacy, uncertainty about the future, determination to survive, accepting or fighting the future and role of religion. Children as young as 5 years old identified needs or concerns in the spiritual domain of care. Conclusions: Addressing spiritual concerns is essential to providing child- and family-centred palliative care. Eliciting spiritual concerns may enable health and social care professionals to identify the things that can support and enhance a meaningful life and legacy for children and their families.
Background: There is no validated outcome measure for use in children’s palliative care outside sub-Saharan Africa. Stakeholders must be involved in the development of such measures to ensure face and content validity. Aim: To gain expert stakeholder consensus on items for inclusion in a paediatric palliative care outcome measure to establish face and content validity. Design: This study was conducted in two phases following Rothrock and COSMIN guidance on patient-reported outcome measure development. Phase 1: Three-round modified Delphi survey to establish consensus on priority items. Phase 2: Item generation meeting with key stakeholders to develop initial measure versions. A young person’s advisory group was also consulted on priority outcomes. Setting and participants: Delphi survey: Parents and professionals with experience of caring for a child with a life-limiting condition. Young person’s advisory group: young people age 10–20 years. Item generation meeting: bereaved parents, academics and clinicians. Results: Phase 1: Delphi survey ( n = 82). Agreement increased from Kendall’s W = 0.17 to W = 0.61, indicating movement towards consensus. Agreement between professional and parent ranking was poor (Cohen’s kappa 0.13). Professionals prioritised physical symptoms, whereas parents prioritised psychosocial and practical concerns. Advisory group: Children ( n = 22) prioritised items related to living a ‘normal life’ in addition to items prioritised by adult participants. Phase 2: Five age/developmental stage appropriate child and proxy-reported versions of C-POS, containing 13 items, were drafted. Conclusions: This study highlights the importance and feasibility of involving key stakeholders in PROM item generation, as important differences were found in the priority outcomes identified by children, parents and professionals.
Background Person-centred outcome measures (PCOMs) are commonly used in routine adult healthcare to measure and improve outcomes, but less attention has been paid to PCOMs in children’s services. The aim of this systematic review is to identify and synthesise existing evidence of the determinants, strategies, and mechanisms that influence the implementation of PCOMs into paediatric healthcare practice. Methods The review was conducted and reported in accordance with PRISMA guidelines. Databased searched included CINAHL, Embase, Medline, and PsycInfo. Google scholar was also searched for grey literature on 25 th March 2022. Studies were included if the setting was a children’s healthcare service, investigating the implementation or use of an outcome measure or screening tool in healthcare practice, and reported outcomes relating to use of a measure. Data were tabulated and thematically analysed through deductive coding to the constructs of the adapted-Consolidated Framework for Implementation Research (CFIR). Results were presented as a narrative synthesis, and a logic model developed. Results We retained 69 studies, conducted across primary ( n = 14), secondary ( n = 13), tertiary ( n = 37), and community ( n = 8) healthcare settings, including both child self-report ( n = 46) and parent-proxy ( n = 47) measures. The most frequently reported barriers to measure implementation included staff lack of knowledge about how the measure may improve care and outcomes; the complexity of using and implementing the measure; and a lack of resources to support implementation and its continued use including funding and staff. The most frequently reported facilitators of implementation and continued use include educating and training staff and families on: how to implement and use the measure; the advantages of using PCOMs over current practice; and the benefit their use has on patient care and outcomes. The resulting logic model presents the mechanisms through which strategies can reduce the barriers to implementation and support the use of PCOMs in practice. Conclusions These findings can be used to support the development of context-specific implementation plans through a combination of existing strategies. This will enable the implementation of PCOMs into routine paediatric healthcare practice to empower settings to better identify and improve child-centred outcomes. Trial registration Prospero CRD 42022330013.
Objectives Children with life-limiting and life-threatening conditions (LLLTC) have complex needs and are high users of health and social care. Several quality standards exist that highlight the importance of addressing the needs and wishes of children and young people (CYP) with LLLTC in paediatric palliative care. However there is limited evidence about what children themselves think is important. The aim of this study is to consider what constitutes good quality care from the perspectives of CYP with LLLTC. Methods Nine UK inpatient and outpatient settings supported recruitment of CYP aged 5–17 with LLLTC to participate in qualitative semi-structured interviews. Care quality was coded within a larger framework analysis. Analysis of verbatim transcripts was supported by NVivo. Results 26 children and young people with a range of LLLTCs (10 gastrointestinal, 6 cancer, 5 neurological, 3 congenital, 1 metabolic, 1 respiratory) were interviewed. Three domains of quality care were identified: 1) good communication with the health and social care professionals that care for CYP; 2) being enabled to be a CYP during their care; and 3) how professionals can best alleviate their symptoms and concerns. Children and young people spoke about the significance of being cared for attentively, by professionals that they know and who make an effort to know them. They want symptom relief in comfortable settings tailored to their needs and interests. It was important to facilitate activities that are appropriate to their cognitive age. CYP also value being included in conversations about their care in an appropriate way. When health and social care professionals ask CYP about things that are important to them it demonstrates that they care. Conclusion Children and young people with life-limiting and life-threatening conditions have unique and important views about what they want from their care. CYP appreciate professionals making an effort to know them in a way that is appropriate to their developmental stage, and explicit opportunities to be part of communication about their care. Quality care must be informed by CYP views, including those with serious, complex illness. Our study has demonstrated that they can provide useful and specific input. Experiential data on quality of care should be collected alongside outcome data. Funding European Research Council [Grant ID: 772635]
Objectives Person-centred outcome measures are commonly used in adult healthcare to measure and improve health outcomes and to support service planning and commissioning [1], but less is known about their use in children’s services [2]. The aim of this systematic review is to identify and synthesise evidence of the determinants, strategies, and mechanisms that influence the implementation of person-centred outcome measures into paediatric healthcare practice. Methods The review (Prospero CRD 42022330013) was conducted and reported in accordance with PRISMA guidelines. Studies were included if the setting was a children’s (0–18 years old) healthcare service, investigating the implementation or use of an outcome measure or screening tool (measure) in healthcare practice, and reported outcomes relating to use of a measure. Data were tabulated and thematically analysed through deductive coding to the constructs of the adapted-Consolidated Framework for Implementation Research. A narrative synthesis was conducted. Results 69 studies met inclusion criteria for the review, conducted across primary (n=14), secondary (n=13), tertiary (n=37), and community (n=8) healthcare settings, including both child self-report (n=46) and parent-proxy (n=47) measures. The most frequently reported barriers to implementation included lack of staff knowledge about how the measure may improve care and outcomes; the complexity of using and implementing the measure; and a lack of resources including funding and staff to support sustained use. The most frequently reported facilitators of implementation and sustained use include educating and training staff and families on: how to implement and use the measure, the advantages of using measures over current practice, and the benefit their use has on patient care and outcomes. Addressing logistical and resource barriers, including time, staffing, and provision of funding and resources such as office supplies, was particularly important for facilitating implementation and sustained use in lower-middle income settings. Conclusion Multiple strategies targeting different mechanisms are needed to address the determinants influencing implementation to successfully embed person-centred outcome measures into routine practice. Key strategies to address barriers to implementation include educating professionals, children and families on using measures and the benefit they have on patient care, and addressing logistical and resource barriers. A combination of the strategies identified can be used to support the development of context-specific implementation plans. This will enable the implementation of person-centred outcome measures into routine paediatric healthcare to empower health and social care providers to better identify and improve child-centred outcomes. References Øvretveit J, Zubkoff L, Nelson EC, Frampton S, Knudsen JL, Zimlichman E. Using patient-reported outcome measurement to improve patient care. International Journal for Quality in Health Care. 2017;29(6):874–9. Huang I-C, Revicki DA, Schwartz CE. Measuring pediatric patient-reported outcomes: good progress but a long way to go. Quality of Life Research. 2014;23(3):747–50.
Self-reported health data from children with life-limiting conditions is rarely collected. To improve acceptability and feasibility of child and family-centred outcome measures for children, they need to be designed in a way that reflects preferences, priorities and abilities. The aim was to identify preferences for patient-reported outcome measure design (recall period, response format, length, administration mode) to improve the feasibility, acceptability, comprehensibility and relevance of a child and family-centred outcome measure, among children with life-limiting conditions and their family members. A semi-structured qualitative interview study seeking the perspectives of children with life-limiting conditions, their siblings and parents on measure design was conducted. Participants were purposively sampled and recruited from nine UK sites. Verbatim transcripts were analysed using framework analysis. A total of 79 participants were recruited: 39 children aged 5–17 years (26 living with a life-limiting condition; 13 healthy siblings) and 40 parents (of children aged 0–17 years). Children found a short recall period and a visually appealing measure with ten questions or fewer most acceptable. Children with life-limiting conditions were more familiar with using rating scales such as numeric and Likert than their healthy siblings. Children emphasised the importance of completing the measure alongside interactions with a healthcare professional to enable them to talk about their responses. While parents assumed that electronic completion methods would be most feasible and acceptable, a small number of children preferred paper. This study demonstrates that children with life-limiting conditions can engage in communicating preferences regarding the design of a patient-centred outcome measure. Where possible, children should be given the opportunity to participate in the measure development process to enhance acceptability and uptake in clinical practice. Results of this study should be considered in future research on outcome measure development in children.
CONTEXT:Evidence is needed to inform expansion of hospital-based palliative care in low and middle-income countries.OBJECTIVES:This study aimed to measure need for palliative care among adult inpatients at five hospitals in Sudan. Objectives were to 1) measure point prevalence of life-limiting and life-threatening illness (LL/LTI); 2) determine patient insight into diagnosis and prognosis; 3) assess palliative care-related symptoms and concerns.METHODS:In this two-day census, data were extracted from charts on documented LL/LTI for each occupied bed. For patients with LL/LTI, self-report data was collected on symptoms, concerns and understanding of diagnosis and prognosis using Integrated African Palliative Outcome Scale (IAPOS).RESULTS:1) Prevalence of LL/LTI in general hospitals was 30.9%-70.5%. 2) n = 439 patients gave self-report data (response rate 89.8%). Mean age was 52.3 (SD 17.8), 59% of patients correctly knew their diagnosis, and 36% knew their illness was progressive. Those with a non-cancer diagnosis were significantly less likely to know their prognosis (28.4% vs 40.7% respectively, P = 0.012). 3) Family anxiety was most burdensome (56.7% scoring on the two most severe categories on a 6-point Likert), followed by pain (52.4%), poor mobility (40.5%), patient worry (39.9%), and fatigue (36.9%). Patients unaware of prognosis had higher total IAPOS scores than those aware their prognosis was progressive, 38.9 (SD = 15.6) (t = -3.297, P = 0.001, mean difference = -5.010, 95% CI: -7.997, -2.023).CONCLUSION:Care for those with life-limiting and life-threatening illness places a significant occupancy burden on public hospitals. Communication skills are required to provide patients with insight, and core palliative care skills for acute hospital clinicians are needed to manage the high burden of symptoms and concerns.
This study aims to identify the symptoms, concerns, and care priorities of children with life-limiting conditions and their families. A semi-structured qualitative interview study was conducted, seeking perspectives from multiple stakeholders on symptoms, other concerns, and care priorities of children and young people with life limiting and life-threatening conditions and their families. Participants were recruited from six hospitals and three children’s hospices in the UK. Verbatim transcripts were analysed using framework analysis. A total of 106 participants were recruited: 26 children (5–17 years), 40 parents (of children 0–17 years), 13 siblings (5–17 years), 15 health and social care professionals, 12 commissioners. Participants described many inter-related symptoms, concerns, and care priorities impacting on all aspects of life. Burdensome symptoms included pain and seizures. Participants spoke of the emotional and social impacts of living with life-limiting conditions, such as being able to see friends, and accessing education and psychological support. Spiritual/existential concerns included the meaning of illness and planning for an uncertain future. Data revealed an overarching theme of pursuing ‘normality’, described as children’s desire to undertake usual childhood activities. Parents need support with practical aspects of care to help realise this desire for normality. Conclusion: Children with life-limiting conditions and their families experience a wide range of inter-related symptoms, concerns, and care priorities. A holistic, child-centred approach to care is needed, allowing focus on pursuit of normal childhood activities. Improvements in accessibility, co-ordination, and availability of health services are required to achieve this.
This study implemented a Delphi Method, a systematic technique which relies on a panel of experts to achieve consensus, to evaluate which questionnaire items would be the most relevant for developing a new Propensity to Trust scale. Two surveys were administered to academic lecturers, professors and Ph.D. candidates specialising in the fields of either individual differences, human robot interaction, or occupational psychology. Results from 28 experts produced 33 final questionnaire items that were deemed relevant for evaluating trust. We discuss the importance of content validity when implementing scales, while we also emphasise the need for more documented scale development processes in psychology. Furthermore, we propose that the Delphi approach could be utilised as an effective and economical method for achieving content validity while also providing more transparency of a scale’s creation.
CONTEXT:Children and young people with life-limiting or life-threatening conditions and their families are potentially vulnerable during COVID-19 lockdowns due to pre-existing high clinical support needs and social participation limitations.OBJECTIVES:To explore the impact of the COVID-19 pandemic and lockdowns on this population.METHODS:Sub-analysis of an emergent COVID-19 related theme from a larger semi-structured interview study investigating priority pediatric palliative care outcomes. One hundred and six United Kingdom-wide purposively-sampled Children and young people with life-limiting or life-threatening conditions, parent/carers, siblings, health professionals, and commissioners.RESULTS:COVID-19 was raised by participants in 12/44 interviews conducted after the United Kingdom's first confirmed COVID-19 case. Key themes included loss of vital social support, disruption to services important to families, and additional psychological distress.CONCLUSION:Continued delivery of child- and family-centered palliative care requires innovative assessment and delivery of psycho-social support. Disruptions within treatment and care providers may compound support needs, requiring cordination for families facing multiagency delays.