Capturing what matters: updating NICE methods guidance on measuring and valuing health

Dawoud, Dalia; Lamb, Alan; Moore, Alan; Bregman, Caroline; Rupniewska, Ewa; Paling, Thomas; Wolfram, Verena; Lovett, Rosemary; Dent, Ross

doi:10.1007/s11136-022-03101-6

Cited by 20 publications

(16 citation statements)

References 23 publications

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“…It must be noted that most of the analyses included in this report were not part of the statistical hierarchy; the results must be viewed cautiously. The individual measures used also have limitations, particularly the EQ-5D-5L, which probably underestimates the impact for patients who did not have a migraine on the day the measure was administered due to its 1-day recall period (i.e., how they feel on the day of assessment) [44][45][46].…”

Section: Study Limitationsmentioning

confidence: 99%

Eptinezumab improved patient‐reported outcomes and quality of life in patients with migraine and prior preventive treatment failures

Goadsby

Barbanti

Lambru

et al. 2023

Euro J of Neurology

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Background and purpose: In the phase 3b, randomized, double-blind, placebo-controlled DELIVER clinical trial, eptinezumab reduced migraine frequency and headache in adults with two to four prior preventive treatment failures. Here, the effect of eptinezumab on coinciding patient-reported outcomes is reported.Methods: Adults were randomized to receive eptinezumab 100, 300 mg or placebo intravenously at weeks 12 and 24. The EQ-5D-5L, measuring overall patient health, and the six-item Headache Impact Test were completed every 4 weeks. The Patient Global Impression of Change was completed at weeks 4, 12 and 24. Patient-identified most bothersome symptom and the Migraine-Specific Quality of Life Questionnaire were administered at weeks 12 and 24.Results: Eptinezumab improved patient-reported outcomes more than placebo, starting at week 4 and at all subsequent time points. By week 12, patients' overall health (EQ-5D-5L visual analog scale score) improved with eptinezumab treatment (difference from placebo in change from baseline: 100 mg, 5.1, 95% confidence interval [CI] 2.2, 8.1, p < 0.001; 300 mg, 7.5, 95% CI 4.5, 10.4, p < 0.0001). At week 12, eptinezumab improved headache-related quality of life (difference from placebo in change from baseline in Headache Impact Test total score: 100 mg, −3.8, 95% CI −5.0, −2.5, p < 0.0001; 300 mg, −5.4, 95% CI −6.7, −4.2, p < 0.0001), including each Migraine-Specific Quality of Life Questionnaire domain (p ≤ 0.0001, all comparisons). Over twice as many patients receiving eptinezumab than placebo reported much or very much improvement on the Patient Global Impression of Change and patient-identified most bothersome symptom. Conclusion:Patients with two to four prior preventive treatment failures receiving eptinezumab versus placebo reported greater improvements in well-being, quality of life and most bothersome symptoms compared to placebo.

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Section: Study Limitationsmentioning

confidence: 99%

Eptinezumab improved patient‐reported outcomes and quality of life in patients with migraine and prior preventive treatment failures

Goadsby

Barbanti

Lambru

et al. 2023

Euro J of Neurology

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“…HRQoL measures are recommended by the National Institute for Health Care Excellence (NICE) in cost-effectiveness analyses of interventions to inform funding decisions [ 7 ]. Specifically for children and young people, NICE guidance favours the use of generic measures with good psychometric performance in the relevant age range [ 8 ].…”

Section: Introductionmentioning

confidence: 99%

Mapping PedsQL™ scores to CHU9D utility weights for children with chronic conditions in a multi-ethnic and deprived metropolitan population

et al. 2023

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Purpose The Child Health Utility-9 Dimensions (CHU9D) is a patient-reported outcome measure to generate Quality-Adjusted Life Years (QALYs), recommended for economic evaluations of interventions to inform funding decisions. When the CHU9D is not available, mapping algorithms offer an opportunity to convert other paediatric instruments, such as the Paediatric Quality of Life Inventory™ (PedsQL), onto the CHU9D scores. This study aims to validate current PedsQL to CHU9D mappings in a sample of children and young people of a wide age range (0 to 16 years of age) and with chronic conditions. New algorithms with improved predictive accuracy are also developed. Methods Data from the Children and Young People’s Health Partnership (CYPHP) were used (N = 1735). Four regression models were estimated: ordinal least squared, generalized linear model, beta-binomial and censored least absolute deviations. Standard goodness of fit measures were used for validation and to assess new algorithms. Results While previous algorithms perform well, performance can be enhanced. OLS was the best estimation method for the final equations at the total, dimension and item PedsQL scores levels. The CYPHP mapping algorithms include age as an important predictor and more non-linear terms compared with previous work. Conclusion The new CYPHP mappings are particularly relevant for samples with children and young people with chronic conditions living in deprived and urban settings. Further validation in an external sample is required. Trial registration number NCT03461848; pre-results.

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“…The National Health Service in the United Kingdom has some specific measures to support caregivers [ 55 ]. The National Institute for Health and Care Excellence, UK has included an assessment of caregivers’ quality-of-life in economic evaluation in its health technology evaluation manual published in January 2022 [ 56 , 57 ].…”

Section: Discussionmentioning

confidence: 99%

Understanding caregiver burden and quality of life in Kerala’s primary palliative care program: a mixed methods study from caregivers and providers’ perspectives

Kochuvilayil,

Varma

2024

Int J Equity Health

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Background Family caregivers are vital for long-term care for persons with serious health-related suffering in Kerala. Long-term caregiving and ageing may become burdensome and detrimental to patients and caregivers. We compared the caregiver burden and quality-of-life of ageing caregivers with younger caregivers. We also explored the palliative care nurses’ perceptions of the family caregivers’ issues. Methods We did a mixed method study focusing on two groups: (i) three in-depth interviews and a cross-sectional survey among 221 caregivers of palliative care patients in five randomly selected panchayats (most peripheral tier of three-tier local self-government system in India concerned with governance of a village or small town) of Kollam district, Kerala, as part of development and validation of the Achutha Menon Centre Caregiver Burden Inventory; (ii) five in-depth interviews with purposively selected primary palliative care nurses as part of a study on local governments and palliative care. We used a structured interview schedule to collect cross-sectional data on sociodemographic and caregiving-related characteristics, caregiver burden, and health-related quality of life using the EuroQol EQ5D5L and interview guidelines on caregiver issues tailored based on participant type for qualitative interviews. Results Older caregivers comprised 28.1% of the sample and had significantly poorer health and quality-of-life attributes. More senior caregivers experiencing caregiver burden had the lowest mean scores of 0.877 (Standard deviation (SD 0.066, 95% confidence intervals (CI) 0.854–0.899) followed by younger caregivers with high burden (0.926, SD 0.090, 95% CI 0.907–0.945), older caregivers with low burden (0.935, SD 0.058, 95% CI 0.912–0.958) and younger caregivers with low burden (0.980, SD 0.041, 95% CI 0.970–0.990). Caregivers faced physical, psychological, social, and financial issues, leading to a caregiver burden. The relationships between the palliative care nurses and family caregivers were complex, and nurses perceived caregiver burden, but there were no specific interventions to address this. Conclusion In our study from Kollam, Kerala, three out of ten caregivers of palliative care patients were 60 years of age or older. They had significantly lower health-related quality of life, particularly if they perceived caregiver burden. Despite being recognized by palliative care nurses, caregiver issues were not systematically addressed. Further research and suitable interventions must be developed to target such problems in the palliative care programme in Kerala.

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Capturing what matters: updating NICE methods guidance on measuring and valuing health

Cited by 20 publications

References 23 publications

Eptinezumab improved patient‐reported outcomes and quality of life in patients with migraine and prior preventive treatment failures

Eptinezumab improved patient‐reported outcomes and quality of life in patients with migraine and prior preventive treatment failures

Mapping PedsQL™ scores to CHU9D utility weights for children with chronic conditions in a multi-ethnic and deprived metropolitan population

Understanding caregiver burden and quality of life in Kerala’s primary palliative care program: a mixed methods study from caregivers and providers’ perspectives

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