A Systematic Review of the Development and Implementation of Needs-Based Palliative Care Tools in Heart Failure and Chronic Respiratory Disease

Waller, Amy; Hobden, Breanne; Fakes, Kristy; Clark, Katherine

doi:10.3389/fcvm.2022.878428

Cited by 8 publications

(8 citation statements)

References 105 publications

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“…High symptom burden is a recognized trigger for referral for specialist palliative care input, 35,38 and needs-based referrals to palliative care are increasingly in focus as treatment guidelines prioritize the need for patient-centered care. 39 Our study results highlight the significant morbidity associated with SSc, and data focusing on this high symptom burden may in part address this barrier of underrecognized severe symptom burden patients with SSc may face in accessing palliative care. Identification of those patients at higher risk of needing palliative care input, such as those with severe pulmonary and gastrointestinal disease complications, particularly as the disease course progresses, may assist in the appropriate targeting of palliative care interventions.…”

Section: Discussionmentioning

confidence: 73%

Quantifying the Need for Specialist Palliative Care Management in Patients With Systemic Sclerosis

Ross,

McDonald,

Hansen

et al. 2024

Arthritis Care & Research

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ObjectiveThe importance of early integration of palliative care in the management of complex multi‐system diseases has been recognised. In this study, we aimed to quantify the need for specialist palliative care in systemic sclerosis (SSc).MethodsUsing data from 875 patients enrolled in the Australian Scleroderma Cohort Study, we defined need for palliative care as a high symptom burden at ≥2 consecutive study visits, ≥50% of overall study visits or at the study visit immediately prior to death. Symptoms of interest included breathlessness, fatigue, pain, depression, anxiety, constipation, and diarrhoea. Logistic regression analyses evaluated the association between individual symptoms and SSc manifestations. Linear regression analysis evaluated the relationship between palliative care needs and quality of life (QoL) and function.ResultsAlmost three‐quarters (72.69%) of patients met the threshold for specialist palliative care needs. Severe fatigue (54.17%) was most common, followed by breathlessness (23.66%) and severe constipation (21.14%). Concurrent severe symptoms were frequently observed. Severe breathlessness (coef ‐7.95, p<0.01) and pain (coef ‐7.70, p<0.01) were associated with the largest reductions in physical QoL. Severe mood symptoms were associated with the greatest reduction in mental QoL (coef ‐12.91, p<0.01). Severe pain (coef 0.56, p<0.01), breathlessness (coef 0.49, p<0.01) and mood symptoms (coef 0.40, p<0.01) had a significant impact on function.ConclusionSSc is frequently associated with multiple severe symptoms that may be amenable to palliative care intervention. Given the strong association between symptom burden and impaired QoL targeted, effective symptom management in parallel with standard‐of‐care treatments may improve overall patient outcomes.

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Section: Discussionmentioning

confidence: 73%

Quantifying the Need for Specialist Palliative Care Management in Patients With Systemic Sclerosis

Ross,

McDonald,

Hansen

et al. 2024

Arthritis Care & Research

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“…Test-retest validity and inter-rater reliability has been partially demonstrated for the NAT:PD-ILD [137].…”

Section: Summary Of Evidencementioning

confidence: 91%

“…Eleven papers were included in our narrative review [125][126][127][128][129][130][131][132][133][134][135], as well as three systematic reviews [124,136,137]. Within these papers, 23 tools are discussed, of which 9 tools aimed to identify unmet needs of patients (7 tools) [125,[127][128][129][130][131][132][133][134][135] or carers (2 tools) [132,136] (online supplement).…”

Section: Summary Of Evidencementioning

confidence: 99%

“…Whilst some NATs, including the NAT:PD-ILD, NEST-13, SCNS-SF34, MYMOP, IPOS, and PNAP have undergone face, content, or psychometric validation in people with serious respiratory illness with positive results [126,137], this has often been in a restricted group such as cystic fibrosis [131] or chronic bronchitis [135]. Others, such as the SNAP tool, have not undergone formal validation [125].…”

Section: Summary Of Evidencementioning

confidence: 99%

“…Needs assessment is an iterative process that occurs over time, not a one-off task. Clinicians require training to utilize and implement NATS effectively [124,137]. It should be noted that completion of a NAT does not guarantee improved outcomes, and resources must be dedicated to addressing unmet needs that are identified, including shared decision-making regarding treatment plans.…”

Section: Implementation Considerationsmentioning

confidence: 99%

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European Respiratory Society clinical practice guideline on symptom management for adults with serious respiratory illness

Holland,

Spathis,

Marsaa

et al. 2024

Eur Respir J

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Respiratory symptoms are ubiquitous and impair health-related quality of life in people with respiratory disease. This European Respiratory Society (ERS) task force aimed to provide recommendations for symptomatic treatment in people with serious respiratory illness.The ERS task force comprised 16 members, including representatives of people with serious respiratory illness and informal caregivers. Seven questions were formulated, six in the “Population, Intervention, Comparison, Outcome” (PICO) format, which were addressed with full systematic reviews and evidence assessed using Grading of Recommendations Assessment, Development and Evaluation (GRADE). One question was addressed narratively. An “evidence-to-decision” framework was used to formulate recommendations.To treat symptoms in people with serious respiratory illness, the task force suggests the use of graded exercise therapy (conditional recommendation, low certainty of evidence); and suggests the use of a multicomponent services, handheld fan and breathing techniques (conditional recommendations, very low certainty of evidence). The task force suggests not to use opioids (conditional recommendation, very low certainty of evidence); and suggests either administering or not administering supplemental oxygen therapy (conditional recommendation, low certainty of evidence). The task force suggests that needs assessment tools may be used as part of a comprehensive needs assessment, but do not replace patient centred care and shared decision making (conditional recommendation, low certainty of evidence). The low certainty of evidence, modest impact of interventions on patient-centred outcomes, and absence of effective strategies to ameliorate cough highlight the need for new approaches to reduce symptoms and enhance wellbeing for individuals who live with serious respiratory illness.

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Using Latent Class Analysis to Identify Different Clinical Profiles Among Patients With Advanced Heart Failure

Blum¹,

McKendrick²,

Gelfman³

et al. 2023

Journal of Pain and Symptom Management

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A Systematic Review of the Development and Implementation of Needs-Based Palliative Care Tools in Heart Failure and Chronic Respiratory Disease

Cited by 8 publications

References 105 publications

Quantifying the Need for Specialist Palliative Care Management in Patients With Systemic Sclerosis

Quantifying the Need for Specialist Palliative Care Management in Patients With Systemic Sclerosis

European Respiratory Society clinical practice guideline on symptom management for adults with serious respiratory illness

Using Latent Class Analysis to Identify Different Clinical Profiles Among Patients With Advanced Heart Failure

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