International Development of the Alzheimer’s Patient Partners Life Impact Questionnaire (APPLIQue)

McKenna, Stephen P.; Rouse, Matthew A; Heaney, Alice; Hagell, Peter

doi:10.1177/1533317520951690

Cited by 8 publications

(8 citation statements)

References 42 publications

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“…The authors of the instrument suggested that caregiver burden is quite similar across neurodegenerative diseases such as PD, Alzheimer’s and Huntington’s, since they are all to varying degree associated with mobility problems, cognitive impairment and behavioral change, which could imply similarities in impact on family caregivers [ 15 ]. The questionnaire has been recommended as a measure of caregiver QoL in intervention studies [ 14 ]. They furthermore suggested that the APPLIQue could be a starting point in developing a common caregiver assessment instrument across neurodegenerative diseases [ 15 ].…”

Section: Discussionmentioning

confidence: 99%

“…Informal caregiver QoL was assessed with the Alzheimer’s Patient Partners Life Impact Questionnaire (APPLIQue, score range 0–25, higher = worse) [ 14 , 15 ], a development of the Alzheimer’s Carers’ QoL Inventory (ACQLI, score range 0–30, higher = worse), found useful also in other neurodegenerative diseases [ 16 ], as at the time of the study design in 2013 there were no specific PD caregiver QoL instruments. The patients’ clinical status was assessed with the following instruments.…”

Section: Methodsmentioning

confidence: 99%

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Caregiver Burden and Quality of Life in Late Stage Parkinson’s Disease

2022

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Parkinson’s disease (PD) is a chronic, progressive, neurodegenerative disease involving both motor and non-motor symptoms (NMS). In the late stage of the disease, Hoehn and Yahr (H&Y) stage IV-V, the symptomatology is often severe and patients become increasingly dependent on help in their daily life, resulting in an increased burden for the informal caregivers. To assess the implications of the caregiver burden, caregiver quality of life (QoL) was assessed in 74 informal caregivers to patients in late stage PD, by the Alzheimer’s Patient Partners Life Impact Questionnaire (APPLIQue), which has been found useful also in PD. The majority of caregivers were the spouse/partner. Individual items provided information on which aspects of caregiver burden were the most common, i.e., items: “feel guilty if not there (71% affirmed)”, “the situation wears me down” (65% affirmed) and “always on my mind” (61% affirmed). In simple linear regression analyses, male patient gender (p = 0.007), better cognition (p = 0.004), lower NMS burden (p = 0.012) and not being the partner (p = 0.022) were associated with better caregiver QoL. Multivariable linear regression analyses identified better cognition (p = 0.004) and male patient gender (p = 0.035) as independently associated with better informal caregiver QoL. Identifying and treating NMS as well as recognizing and alleviating caregiver burden seem essential to enhance QoL for both patients and caregivers in late stage PD.

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Section: Discussionmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

Caregiver Burden and Quality of Life in Late Stage Parkinson’s Disease

2022

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“…This is called differential item functioning and is important in specifying the populations required for clinical trials. For example, in the development of the Alzheimer’s Patient Partner’s Life Impact Questionnaire (APPLIQue) it was shown that spousal caregivers were affected differently from other family caregivers 15 , 16 . Grouping all caregivers together in a clinical trial would give meaningless results.…”

Section: Rasch Measurement Theorymentioning

confidence: 99%

Fundamental Outcome Measurement: Selecting Patient Reported Outcome Instruments and Interpreting the Data they Produce

2021

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Over the past 40 years literally thousands of generic and disease specific patient reported outcome (PRO) instruments have been developed. While most were developed for a specific study and were never used again, there is still the question of how manufacturers and others should select a PRO instrument for a study. These studies may be clinical pivotal trials or observational tracking studies to support therapy response. Formulary committees also need to be able to interpret PRO data to make decisions about whether to accept claims for therapy response. It is possible to argue that the many different approaches to outcome measurement have resulted from the lack of agreed methodologies. However, a more likely explanation is that the authors have failed to apply the axioms of fundamental measurement when creating their measures. The result is a plethora of ordinal PRO instruments that inform little about the impact of interventions. Clinical trials rarely report PRO data. Where they do, analyses are generally restricted to (for example) changes in the experimental group’s scores. Comparisons between the treatment and placebo groups or between active groups are infrequently reported, most likely due to the failure of the instrument to show differences or changes in outcome. This is unfortunate as it means no assessment is made of the value that patients gain from the intervention. This commentary is intended to make researchers and formulary committees aware of the issues that need to be addressed when selecting PRO instruments for a study or evaluating publications and claims for therapy response. The latter is crucial as reported data influence the selection of medicines and healthcare products. In the latter case a particular concern is with PRO claims embedded in simulation models.

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“…This is achieved by, as a first step, creating an ordinal score based on item response in the items in the measure. The steps in instrument development are well established, as illustrated in the development of the Alzheimer’s Patient Partners Life Impact Questionnaire (APPLIQue) 19 :…”

Section: The Requirement For Fundamental Measuremementmentioning

confidence: 99%

Fundamental Measurement: The Need Fulfilment Quality of Life (N-QOL) Measure

Langley

McKenna

2021

Innov Pharm

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The quality adjusted life year (QALY) has serious problems related to its failure to adhere to measurement theory. If a QALY is to be meaningful, the utility score that translates time spent to an equivalent time spent in so-called perfect health must have ratio properties (i.e., it must support multiplication). Multiattribute utility scores (e.g. those generated by the EQ-5D-5L) fail to meet this standard. The multiattribute instruments produce ordinal scores that lack a true zero and they generate negative values. The manifest deficiencies of multiattribute utility instruments render them unfit, not only as a measure of therapy response but also in generating QALY claims. After 30 years of belief in their use, utilities and QALYs are clearly analytical dead ends. The purpose of this commentary is to demonstrate a coherent way forward in health technology assessment by focusing, not on clinical attributes as surrogates for quality of life, but on measures that are based on a conceptual model describing patient value in terms of need-fulfilment. Building on an extensive, yet often overlooked literature, need-based measures that fit Rasch Measurement Theory criteria are converted from ordinal scores to interval scores to evaluate response to therapy. These measures meet the requirements of single attribute fundamental measurement which is the standard in the physical sciences. It is proposed that a translation from a Rasch interval scale (defined by logits) can be transformed to a bounded ratio scale. Need based Quality of Life (N-QOL) scales bounded by 0 (where no needs are fulfilled) to 1 (where all needs are fulfilled) form such scales. The N-QOL supports the full range of arithmetic operations. Multiattribute utilities and mathematically invalid QALYs can be put to one side as unfortunate historical curiosities in favor of a disease or target population specific N-QOL scale. Such a scale has the required properties to evaluate disease specific response to therapy This can also support N-QOL adjusted life years with a need- fulfillment life year (NALY) metric with ratio properties.

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International Development of the Alzheimer’s Patient Partners Life Impact Questionnaire (APPLIQue)

Cited by 8 publications

References 42 publications

Caregiver Burden and Quality of Life in Late Stage Parkinson’s Disease

Caregiver Burden and Quality of Life in Late Stage Parkinson’s Disease

Fundamental Outcome Measurement: Selecting Patient Reported Outcome Instruments and Interpreting the Data they Produce

Fundamental Measurement: The Need Fulfilment Quality of Life (N-QOL) Measure

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