Patterns of diagnoses among children and young adults with life-limiting conditions: A secondary analysis of a national dataset

Fraser, Lorna; Lidstone, Victoria; Miller, Michael G.; Aldridge, Jan; Norman, Paul; McKinney, Patricia A.; Parslow, Roger C

doi:10.1177/0269216314528743

Cited by 48 publications

(46 citation statements)

References 19 publications

(34 reference statements)

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“…There is also a need to explore the commissioning of appropriate services. Young adults with LLCs have some distinctive psychosocial and physical needs compared with the adult population using adult hospice services, including sexuality, decision‐making and consent, a reliance on parents rather than self‐advocacy and limited peer support (Fraser et al., ; Pritchard et al., ). The planning of services for young adults with LLCs needs to acknowledge that they are not a homogenous group and their needs will vary depending on their comorbidities, age of diagnosis, severity of complex needs, life experiences, knowledge of their condition, personal goals and expectations of services (Bomba et al., ; Lidstone, ; Together for Short Lives, ).…”

Section: Discussionmentioning

confidence: 99%

Meeting the needs of young adults with life‐limiting conditions: A UK survey of current provision and future challenges for hospices

Knighting

Bray

Downing

et al. 2018

Journal of Advanced Nursing

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Section: Discussionmentioning

confidence: 99%

Meeting the needs of young adults with life‐limiting conditions: A UK survey of current provision and future challenges for hospices

Knighting

Bray

Downing

et al. 2018

Journal of Advanced Nursing

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“…Although impact of time pressures on effective practice was one of the highest ranked consensus statements (20:3,3,3,6) GPs still prioritised PPC patients. Time pressures also underpinned the identified challenges faced developing effective relationships with families 3 4 5. Unlike other disease groups (where a more prolonged period of palliation may provide additional opportunities for GP contact) the recognised often short duration of palliation for children with cancer4 5 highlights the need for close collaboration with the RCCC.…”

Section: Discussionmentioning

confidence: 99%

“…GPs often have minimal contact with these families, in part due to the rarity of the condition but also because the child's first contact when unwell during treatment is the hospital 3. The often short duration of palliative care (weeks to months) compared with other life-limiting conditions (which can be years),4 5 can also result in minimal opportunities for the GP to meet, and develop an effective working relationship, with the family. However, GPs recognise their role in paediatric palliative care (PPC) as important, acknowledging they can add value to the care provision and gain personally from the experience 3 6 7.…”

Section: Introductionmentioning

confidence: 99%

GPs and paediatric oncology palliative care: a Q methodological study

Neilson

Jeffares

Greenfield

2017

BMJ Support Palliat Care

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ObjectiveThis mixed methods study set in the West Midlands region of the United Kingdom demonstrates the effectiveness of Q methodology in examining general practitioners' (GPs') perception of their role in children's oncology palliative care. Methods Using data obtained from the analysis of semi-structured interviews with GPs who had cared for a child receiving palliative care at home and bereaved parents, 50 statements were identified as representative of the analysis findings. 32 GPs with a non-palliative child with cancer on their caseload were asked to rank the statements according to their level of agreement/disagreement on a grid. They were then asked to reflect and comment on the statements they most and least agreed with. The data were analysed using a dedicated statistical software package for Q analysis PQMethod 2.20 (Schmolck 2012). A centroid factor analysis was undertaken initially with 7 factors then repeated for factors 1-6. Varimax and manual flagging was then completed. Results Four shared viewpoints were identified denoting different GP roles: The General Practitioner, The Compassionate Practitioner, The Team Player Practitioner and The Pragmatic Practitioner. In addition consensus (time pressures, knowledge deficits, emotional toll) and disagreement (psychological support, role, experiential learning, prior relationships) between the viewpoints were identified and examined. Conclusions Q methodology, used for the first time in this arena, identified four novel and distinct viewpoints reflecting a diverse range of GP perspectives. Appropriately timed and targeted GP education, training, support, in conjunction with collaborative multiprofessional working, have the potential to inform their role and practice across specialities.

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“…These are broadly categorised into four typologies that include congenital anomalies, metabolic diseases, neurological conditions and conditions that are non-progressive, like cerebral palsy [9]. In fact, the cohort with oncological diagnoses number just around 20-30% [10,11] in most PPC patient census.…”

Section: Introductionmentioning

confidence: 99%

Who needs and continues to need paediatric palliative care? An evaluation of utility and feasibility of the Paediatric Palliative Screening scale (PaPaS)

Chong¹,

Soo

Yeo³

et al. 2020

BMC Palliat Care

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Background: While the populations of children who can benefit from paediatric palliative care (PPC) have been broadly defined, identifying individual patients to receive PPC has been problematic in practice. The Paediatric Palliative Screening scale (PaPaS) is a multi-dimensional tool that assesses palliative care needs in children and families to facilitate timely referrals. This study evaluates its use to manage new referrals and ongoing review of patients receiving home-based PPC in Singapore. Methods: Using a retrospective cohort study design, 199 patients admitted to receive PPC via clinician screening were scored using PaPaS. Eighty-four patients in two groups were scored again at one of two following milestones: one-year service continuation mark or point of discharge before a year. Accuracy measures were compared against clinical assessment.Results: 96.98% of patients scored 15 and above on admission (indicating need for PPC). Patients assessed at following milestones were effectively stratified; those who continued to receive service after 1 year scored significantly higher (M = 19.23) compared to those who were discharged within a year (M = 7.86). Sensitivity and specificity for PaPaS were calculated at 82.54 and 100% respectively. Overall congruence with clinician-based decisions supports the utility of PaPaS as a screening tool in PPC. Recommendations to improve the scale further are proposed. Conclusion:The PaPaS is a practical screening tool that signposts PPC needs within the clinical setting. This facilitates early referrals to PPC, without having to specify individual prognoses that are often uncertain. Other benefits include optimised continuity of care and implications for resource allocation.

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Patterns of diagnoses among children and young adults with life-limiting conditions: A secondary analysis of a national dataset

Abstract: Background

Cited by 48 publications

References 19 publications

Meeting the needs of young adults with life‐limiting conditions: A UK survey of current provision and future challenges for hospices

Meeting the needs of young adults with life‐limiting conditions: A UK survey of current provision and future challenges for hospices

GPs and paediatric oncology palliative care: a Q methodological study

Who needs and continues to need paediatric palliative care? An evaluation of utility and feasibility of the Paediatric Palliative Screening scale (PaPaS)

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