Development and validation of the Parenteral Nutrition Impact Questionnaire (PNIQ), a patient-centric outcome measure for Home Parenteral Nutrition

Wilburn, Jeanette; McKenna, Stephen P.; Heaney, Alice; Rouse, Matthew A; Taylor, Michael; Culkin, Alison; Gabe, Simon; Burden, Sorrel; Lal, Simon

doi:10.1016/j.clnu.2017.04.004

Cited by 41 publications

(45 citation statements)

References 23 publications

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“…9,22 SF-36 is not disease specific and has been translated and validated for speakers of the German language. 23 The self-completed questionnaire includes 36 12 The scores range from 0 to 100, with higher scores representing higher QoL, and were calculated using HTS 5 (Hogrefe, Göttingen, Germany). The patient SF-36 domain values were compared with group scores of the general German population from 1998 (Hogrefe) and published IF patient data from Pironi et al from 2004.…”

Section: Quality Of Lifementioning

confidence: 99%

Determinants of Quality of Life in Patients With Intestinal Failure Receiving Long‐Term Parenteral Nutrition Using the SF‐36 Questionnaire: A German Single‐Center Prospective Observational Study

Blüthner

Bednarsch

Stockmann

et al. 2019

J Parenter Enteral Nutr

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Background Parenteral nutrition (PN) is a life‐sustaining therapy for patients with chronic intestinal failure (IF) but inevitably has an impact on patients’ quality of life (QoL). The purpose of this study was to examine multiple aspects of QoL by utilizing the standardized Short Form 36 (SF‐36) health survey. Methods Between 2014 and 2017, a total of 90 adult patients with IF who were receiving PN were prospectively enrolled in an observational study. All subjects underwent nutrition status assessment, liver assessment, blood tests, and QoL assessment based on the SF‐36. Univariate and multivariable analyses were performed to identify determinants of 8 domains and 2 summary scales of the SF‐36. Results Analysis of the SF‐36 questionnaire data showed that QoL was significantly worse compared with the general German population across all categories. Multivariable analysis revealed that bioelectrical impedance analysis of phase angle (1/10 categories), stoma/fistula (4/10 categories), oral intake (4/10 categories), infusions per week (1/10 categories), duration of PN (1/10 categories), citrulline (4/10 categories), and hemoglobin levels (1/10 categories) are independent risk factors affecting QoL. Conclusion This study uses the largest cohort of IF patients assessed by the standardized SF‐36 questionnaire to comprehensively analyze QoL. Presence of oral intake, presence of ostomy, and citrulline levels were independently correlated with 4 of 10 categories of the SF‐36. These results indicate that to improve QoL for IF patients, clinical care should focus on addressing the social and emotional value of oral intake, educational interventions, early stoma closure, and application of new targeted therapies.

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Section: Quality Of Lifementioning

confidence: 99%

Determinants of Quality of Life in Patients With Intestinal Failure Receiving Long‐Term Parenteral Nutrition Using the SF‐36 Questionnaire: A German Single‐Center Prospective Observational Study

Blüthner

Bednarsch

Stockmann

et al. 2019

J Parenter Enteral Nutr

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“…8 The effect of HPN dependence on patients' lives is substantial and has generated an increasing interest in evaluating quality of life (QoL) in this patient group. 9 Issues important to patients that impact on QoL include the restrictive nature of overnight HPN leading to limited mobility, fatigue, social isolation, sleep interference and psychological problems associated with the highly regulated lifestyle required for intravenous feeding. 10,11 Furthermore, the majority of those on HPN rarely return to gainful or satisfying employment adding to the sense of social isolation and lack of purpose.…”

Section: Introductionmentioning

confidence: 99%

The impact of home parenteral nutrition on the burden of disease including morbidity, mortality and rate of hospitalisations

Burden

Hemstock

Taylor

et al. 2018

Clinical Nutrition ESPEN

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Introduction: Home parenteral nutrition (HPN) provides fluid and nutrition essential for the survival of patients with type 3 intestinal failure (IF). However, it is associated with complications and readmissions to hospital. This study aims to investigate the effect of HPN burden on mortality, morbidity and hospital re-admission rates in patients with IF. Method: This is a retrospective cohort study. All patients newly dependent on HPN discharged over a 4-year period between 2011-2015 were included. Patients' characteristics, nutritional status and diagnosis were recorded, along with frequency and duration of HPN administration. Outcomes collected included hospital re-admissions, morbidity, catheter related blood stream infections (CRBSIs) and mortality. Regression analyses were performed to estimate the rate of different outcomes adjusted for prognostic factors. Results: There were 210 patients included in the analysis, 561 separate HPN prescriptions equating to 110,537 catheter days. A total of 196 re-admissions to hospital were recorded for a total of 5594 days, 69 (33%) of these re-admissions were unplanned (2484 days in hospital). Principle reasons for unplanned re-admissions included: CRBSIs (n=31, 45%); other sepsis (n=10, 14.5%) and abdominal symptoms (n=9, 13%). CRBSIs were recorded in 22 (10%) patients, equating to a rate of 0.199 per 1000 catheter days. Days per week on HPN increased the relative rate (RR) of time in hospital due to any reason or for unplanned re-admissions, RR 1.50 (95% CI: 1.26, 1,78 p<0.001) and RR 1.39 (95% CI: 1.10, 1.75 p=0.006) respectively. However, there was no association between days per week on HPN and CRBSI occurrence. Conclusion: Unplanned re-admissions for patients with IF accounted for a third of all hospitalisations in those on HPN and the majority were due to CRBSI. The number of HPN dependent days per week was related to all-cause unplanned re-admissions, although not to CRBSI rate.

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“…A crucial aspect of these PROMs is that, while the items are all generated directly from relevant interviewees, selection of those to be included in the questionnaires is governed by the conceptual model. All instruments developed since the year 2000 using the needs-based theory fit RMT [23][24][25] . Work is ongoing on the identification of the specification equation linking the needs-based construct theory to scores obtained on the instruments.…”

Section: The Needs-based Quality-of-life (Qol) Theory Modelmentioning

confidence: 99%

Measurement of patient-reported outcomes. 2: Are current measures failing us?

McKenna

Heaney

Wilburn

2019

Journal of Medical Economics

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All instruments designed to measure latent (unobservable) variables, such as patient-reported outcomes (PROs), have three major requirements; a coherent construct theory, a specification equation, and the application of an appropriate response model. The theory guides the selection of content for the questionnaire and the specification equation links the construct theory to scores produced with the instrument. For the specification equation to perform this role, the patient-reported outcome measure (PROM) must employ a response model that generates values for its individual items. The most commonly applied response model in PROM development is the Rasch model. To date this level of measurement sophistication has not been achieved in PRO measurement. Consequently, it is not possible to establish a PROM's true construct validity. However, the development of the Lexile Framework for Reading has demonstrated that such objective measurement is possible for latent variables. This article argues that higher quality PROM development is needed if meaningful and valid PRO measurement is to be achieved. It describes the current state of PROM development, shows that published reviews of PROMs adopt inappropriate criteria for judging their quality, and illustrates how the use of traditional PROMs can lead to incorrect (and possibly dangerous) conclusions being drawn about the efficacy of interventions.

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Development and validation of the Parenteral Nutrition Impact Questionnaire (PNIQ), a patient-centric outcome measure for Home Parenteral Nutrition

Cited by 41 publications

References 23 publications

Determinants of Quality of Life in Patients With Intestinal Failure Receiving Long‐Term Parenteral Nutrition Using the SF‐36 Questionnaire: A German Single‐Center Prospective Observational Study

Determinants of Quality of Life in Patients With Intestinal Failure Receiving Long‐Term Parenteral Nutrition Using the SF‐36 Questionnaire: A German Single‐Center Prospective Observational Study

The impact of home parenteral nutrition on the burden of disease including morbidity, mortality and rate of hospitalisations

Measurement of patient-reported outcomes. 2: Are current measures failing us?

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