Periodic Reporting for period 4 - C-POS (Children's Palliative care Outcome Scale)
Okres sprawozdawczy: 2023-03-01 do 2024-08-31
Person-centred care is a core value of modern health care. Repeated reviews and policies have called for scientific advancement to develop, validate and implement person-centred outcome measures (PCOMs) for children, young people (CYP) and their families affected by life-limiting and life-threatening conditions (LLLTCs) [1-2]. Currently no valid tool exists [3], because self-report among children is complex, there are sensitivities around the subject, and a lack of evidence on their symptoms and concerns. The C-POS study addresses these gaps.
2,500 CYP die annually from LLLTCs in England and Wales, accounting for 50% of all CYP deaths [4]. Increased survival rates due to treatment advances has led to trajectories with slow deterioration and high dependency and disability, with palliative care needed over a potentially long and unpredictable trajectory [5]. Recent data shows rising prevalence of childhood LLLTC. In England, LLLTCs in CYP (aged 0-19 years) increased from 26.7 per 1000 in 2001/2 to 66.4 per 10000 in 2017/18 [6]. Globally, it is estimated that 21 million children require palliative care each year [7].
The overall objective of the C-POS study is to develop a child and family-centred outcome measure that can be used by CYP and their families affected by LLLTCs, and to test its psychometric properties. We will do this in three phases: 1) development, 2) testing, and 3) implementation of C-POS:UK.
2,500 CYP die annually from LLLTCs in England and Wales, accounting for 50% of all CYP deaths [4]. Increased survival rates due to treatment advances has led to trajectories with slow deterioration and high dependency and disability, with palliative care needed over a potentially long and unpredictable trajectory [5]. Recent data shows rising prevalence of childhood LLLTC. In England, LLLTCs in CYP (aged 0-19 years) increased from 26.7 per 1000 in 2001/2 to 66.4 per 10000 in 2017/18 [6]. Globally, it is estimated that 21 million children require palliative care each year [7].
The overall objective of the C-POS study is to develop a child and family-centred outcome measure that can be used by CYP and their families affected by LLLTCs, and to test its psychometric properties. We will do this in three phases: 1) development, 2) testing, and 3) implementation of C-POS:UK.
PHASE 1: DEVELOPMENT
We spoke to 106 people, including 26 CYP with LLLTCs (aged 5-17), 13 siblings, 40 parents/informal carers (of CYP with LLLTCs, aged 0-17), 15 healthcare professionals and 12 commissioners to understand the priority symptoms and concerns of CYP with LLLTCs and their families. Participants spoke about symptoms and concerns spanning physical, emotional/psychological, spiritual/existential, social and practical matters [8-10].
We also investigated the preferences of CYP with LLLTCs for a new measure, including how far back they could recall, how they could respond, how many questions to ask, and whether to ask on paper or on computer [11-12].
We systematically gathered and assessed the evidence on response scale type, recall period, and administration mode, and how they can affect children’s engagement in reporting their health outcomes. We included any health outcome, for all CYP under 19 years of age. Eight recommendations were made from the 81 articles assessed to support all those involved in measure development for CYP, including the need for a short recall period, visual appeal, and having different versions for different CYP age groups [13].
We conducted a Delphi study with parent/caregivers and professionals to obtain consensus on which outcomes to include in the C-POS measure. A young person's advisory group (YPAG) of CYP aged 10-21 years was also consulted to review outcomes ranked by parents and professional, to ensure children's views were also considered[14].
All the research described above was then presented to experts at a meeting to generate C-POS:UK. The 22 participants included paediatric palliative care clinicians, clinical academics with expertise in PCOM development, bereaved parents and members of the research team.
PHASE 2: TESTING
We conducted cognitive interviews to ensure that CYP with LLLTCs and their parents can complete and interpret the proposed C-POS:UK. In total, 48 people participated, including 12 CYP with LLLTCs, and 36 parents[15]. These interviews informed small but important changes to C-POS:UK.
We used the final versions to test C-POS:UK in a large national questionnaire study. 105 CYP (aged 5-17), 347 parents/carers of CYP < 18 years, and 77 health and social care professionals completed C-POS:UK. Full results will be published soon.
PHASE 3: IMPLEMENTATION
We conducted a systematic review of the evidence to understand what is known about what helps and hinders implementation of paediatric PCOMs in routine practice [16]. We also conducted a qualitative study to understand similar factors specific to paediatric palliative care [17]. Teaching staff and families how to use a PCOM and ensuring there was enough resource (e.g. staff time) to facilitate implementation was particularly helpful. An implementation plan was then developed through workshops with professionals and parents, in partnership with the expert steering group, and involvement work with CYP.
REFERENCES
[1] R Harding et al., International Journal of Palliative Nursing 25 (2), 72 (2019).DOI: 10.12968/ijpn.2019.25.2.72
[2] A Booth et al., Palliative Medicine 32 (10), 1552 (2018).DOI: 10.1177/0269216318800172
[3] LH Coombes et al., Palliative Medicine 30 (10), 935 (2016).DOI: 10.1177/0269216316649155
[4] P Sidebotham et al., The Lancet 384 (9946), 904 (2014).DOI: 10.1016/S0140-6736(13)61090-9
[5] SS Jassal, in Oxford Handbook of Palliative Care, edited by Max Watson, Stephen Ward, Nandini Vallath et al. (Oxford University Press, 2019).
[6] LK Fraser et al., 2020. ‘Make Every Child Count’
[7] SR Connor et al., J Pain Symptom Manage 53 (2), 171 (2017).DOI: 10.1016/j.jpainsymman.2016.08.020
[8] L Coombes et al., European Journal of Pediatrics 181 (10), 3739 (2022).DOI: 10.1007/s00431-022-04566-w
[9] HM Scott et al., Palliative Medicine 37 (6), 856 (2023).DOI: 10.1177/02692163231165101
[10] HM Scott et al., J Pain Symptom Manage 64 (1), e1 (2022).DOI: 10.1016/j.jpainsymman.2022.02.330
[11] L Coombes et al., The Patient - Patient-Centered Outcomes Research 16 (5), 473 (2023).DOI: 10.1007/s40271-023-00627-w
[12] K Bristowe et al., Palliative Medicine 38 (3), 379 (2024).DOI: 10.1177/02692163241233977
[13] L Coombes et al., Quality of Life Research 30 (7), 1803 (2021).DOI: 10.1007/s11136-021-02814-4
[14] L Coombes et al., Palliative Medicine 37 (10), 1509 (2023).DOI: 10.1177/02692163231205126
[15] L Coombes et al., Palliative Medicine 38 (6), 644 (2024).DOI: 10.1177/02692163241248735
[16] HM Scott et al., Health and Quality of Life Outcomes 21 (1), 63 (2023).DOI: 10.1186/s12955-023-02143-9
[17] HM Scott et al., Palliat Med 38 (4), 471 (2024).DOI: 10.1177/02692163241234797
We spoke to 106 people, including 26 CYP with LLLTCs (aged 5-17), 13 siblings, 40 parents/informal carers (of CYP with LLLTCs, aged 0-17), 15 healthcare professionals and 12 commissioners to understand the priority symptoms and concerns of CYP with LLLTCs and their families. Participants spoke about symptoms and concerns spanning physical, emotional/psychological, spiritual/existential, social and practical matters [8-10].
We also investigated the preferences of CYP with LLLTCs for a new measure, including how far back they could recall, how they could respond, how many questions to ask, and whether to ask on paper or on computer [11-12].
We systematically gathered and assessed the evidence on response scale type, recall period, and administration mode, and how they can affect children’s engagement in reporting their health outcomes. We included any health outcome, for all CYP under 19 years of age. Eight recommendations were made from the 81 articles assessed to support all those involved in measure development for CYP, including the need for a short recall period, visual appeal, and having different versions for different CYP age groups [13].
We conducted a Delphi study with parent/caregivers and professionals to obtain consensus on which outcomes to include in the C-POS measure. A young person's advisory group (YPAG) of CYP aged 10-21 years was also consulted to review outcomes ranked by parents and professional, to ensure children's views were also considered[14].
All the research described above was then presented to experts at a meeting to generate C-POS:UK. The 22 participants included paediatric palliative care clinicians, clinical academics with expertise in PCOM development, bereaved parents and members of the research team.
PHASE 2: TESTING
We conducted cognitive interviews to ensure that CYP with LLLTCs and their parents can complete and interpret the proposed C-POS:UK. In total, 48 people participated, including 12 CYP with LLLTCs, and 36 parents[15]. These interviews informed small but important changes to C-POS:UK.
We used the final versions to test C-POS:UK in a large national questionnaire study. 105 CYP (aged 5-17), 347 parents/carers of CYP < 18 years, and 77 health and social care professionals completed C-POS:UK. Full results will be published soon.
PHASE 3: IMPLEMENTATION
We conducted a systematic review of the evidence to understand what is known about what helps and hinders implementation of paediatric PCOMs in routine practice [16]. We also conducted a qualitative study to understand similar factors specific to paediatric palliative care [17]. Teaching staff and families how to use a PCOM and ensuring there was enough resource (e.g. staff time) to facilitate implementation was particularly helpful. An implementation plan was then developed through workshops with professionals and parents, in partnership with the expert steering group, and involvement work with CYP.
REFERENCES
[1] R Harding et al., International Journal of Palliative Nursing 25 (2), 72 (2019).DOI: 10.12968/ijpn.2019.25.2.72
[2] A Booth et al., Palliative Medicine 32 (10), 1552 (2018).DOI: 10.1177/0269216318800172
[3] LH Coombes et al., Palliative Medicine 30 (10), 935 (2016).DOI: 10.1177/0269216316649155
[4] P Sidebotham et al., The Lancet 384 (9946), 904 (2014).DOI: 10.1016/S0140-6736(13)61090-9
[5] SS Jassal, in Oxford Handbook of Palliative Care, edited by Max Watson, Stephen Ward, Nandini Vallath et al. (Oxford University Press, 2019).
[6] LK Fraser et al., 2020. ‘Make Every Child Count’
[7] SR Connor et al., J Pain Symptom Manage 53 (2), 171 (2017).DOI: 10.1016/j.jpainsymman.2016.08.020
[8] L Coombes et al., European Journal of Pediatrics 181 (10), 3739 (2022).DOI: 10.1007/s00431-022-04566-w
[9] HM Scott et al., Palliative Medicine 37 (6), 856 (2023).DOI: 10.1177/02692163231165101
[10] HM Scott et al., J Pain Symptom Manage 64 (1), e1 (2022).DOI: 10.1016/j.jpainsymman.2022.02.330
[11] L Coombes et al., The Patient - Patient-Centered Outcomes Research 16 (5), 473 (2023).DOI: 10.1007/s40271-023-00627-w
[12] K Bristowe et al., Palliative Medicine 38 (3), 379 (2024).DOI: 10.1177/02692163241233977
[13] L Coombes et al., Quality of Life Research 30 (7), 1803 (2021).DOI: 10.1007/s11136-021-02814-4
[14] L Coombes et al., Palliative Medicine 37 (10), 1509 (2023).DOI: 10.1177/02692163231205126
[15] L Coombes et al., Palliative Medicine 38 (6), 644 (2024).DOI: 10.1177/02692163241248735
[16] HM Scott et al., Health and Quality of Life Outcomes 21 (1), 63 (2023).DOI: 10.1186/s12955-023-02143-9
[17] HM Scott et al., Palliat Med 38 (4), 471 (2024).DOI: 10.1177/02692163241234797
We have worked closely with parents of CYP with LLLTCs throughout this study. You can read more about their experiences here: https://arc-sl.nihr.ac.uk/news-insights/blog-and-commentary/power-involvement-ensuring-parents-voices-are-heard-development(odnośnik otworzy się w nowym oknie)
We worked with parents of CYP with LLLTCs and professionals to develop videos to support C-POS:UK implementation:
- for families of CYP with LLLTCs: https://www.youtube.com/watch?v=0UMJdSAzz9U(odnośnik otworzy się w nowym oknie)
- for professionals supporting CYP with LLLTCs and their families: https://www.youtube.com/watch?v=wNeOWqFkz-Q(odnośnik otworzy się w nowym oknie)
You can register your interest in the measure here: https://pos-pal.org/maix/c-pos-uk-download.php(odnośnik otworzy się w nowym oknie)
We worked with parents of CYP with LLLTCs and professionals to develop videos to support C-POS:UK implementation:
- for families of CYP with LLLTCs: https://www.youtube.com/watch?v=0UMJdSAzz9U(odnośnik otworzy się w nowym oknie)
- for professionals supporting CYP with LLLTCs and their families: https://www.youtube.com/watch?v=wNeOWqFkz-Q(odnośnik otworzy się w nowym oknie)
You can register your interest in the measure here: https://pos-pal.org/maix/c-pos-uk-download.php(odnośnik otworzy się w nowym oknie)