The impact of Home Parenteral Nutrition on the lives of adults with Type 3 Intestinal Failure

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

doi:10.1016/j.clnesp.2018.02.003

Cited by 29 publications

(43 citation statements)

References 22 publications

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“…7,30,35 Other pub-lished QoL data are primarily based on qualitative interviews with open questions, rendering meaningful, quantitative cross-comparison difficult. 37,38 Therefore, this is 1 of the largest structured, quantitative QoL studies in PNdependent adults with IF published to date that showed an association between determinants of QoL such as citrulline levels, presence of ostomy, and oral intake status and 4 of 10 SF-36 categories by multivariable analyses (Table 4).…”

Section: Discussionmentioning

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: Discussionmentioning

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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“…HPN is experienced in the context of living with other symptoms of illness, which may be burdensome [8,26,28]. Other recurring themes are restrictions imposed from being connected to the HPN and the lack of autonomous control over their body [8,26,29]. Moving about with the feed was particularly problematic for frailer patients.…”

Section: Discussionmentioning

confidence: 99%

Palliative home parenteral nutrition in patients with ovarian cancer and malignant bowel obstruction: experiences of women and family caregivers.

Sowerbutts

Lal

Sremanak

et al. 2019

Preprint

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Background Malnutrition is a problem is advanced cancer, particularly ovarian cancer where malignant bowel obstruction (MBO) is a frequent complication. Parenteral nutrition is the only way these patients can received adequate nutrition and is a principal indication for palliative home parenteral nutrition (HPN). Giving HPN is contentious as it may increase the burden on patients. This study investigates patients’ and family caregivers’ experiences of HPN, alongside nutritional status and survival in patients with ovarian cancer and MBO. Methods This mixed methods study collected data on participant characteristics, clinical details and body composition using computed tomography combined with longitudinal in-depth interviews underpinned by phenomenological principles. The cohort comprised 38 women with ovarian cancer and inoperable MBO admitted (10/2016 to 12/ 2017) to a tertiary referral hospital. Longitudinal interviews (n=57) were carried out with 20 women considered for HPN and 15 of their family caregivers. Results Of the 38 women, 32 received parenteral nutrition (PN) in hospital and 17 were discharged on HPN. Nutritional status was poor with 31 of 33 women who had a CT scan having low muscle mass, although 10 were obese. Median overall survival from admission with MBO for all 38 women was 70 days (range 8 - 506) and for those 17 on HPN was 156 days (range 46 – 506). Women experienced HPN as one facet of their illness, but viewed it as a “lifeline” that allowed them to live outside hospital Nevertheless, HPN treatment came with losses including erosion of normality through an impact on activities of daily living and dealing with the bureaucracy surrounding the process. Family caregivers coped but were often left in an emotionally vulnerable state. Conclusions: Women and family caregivers reported that the inconvenience and disruption caused by HPN was worth the extended time they had at home.

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“…All needs-based PROMs contain items derived directly from patients, as they are the only people who could be considered "experts" in living with a specific disease 21,22 . 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.…”

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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The impact of Home Parenteral Nutrition on the lives of adults with Type 3 Intestinal Failure

Abstract: The study illustrates how patients' lives are affected by HPN. Statements generated from this qualitative study were used to produce the Parenteral Nutrition Impact Questionnaire (PNIQ), a patient-centric measure of quality of life specific to people using HPN.

Cited by 29 publications

References 22 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

Palliative home parenteral nutrition in patients with ovarian cancer and malignant bowel obstruction: experiences of women and family caregivers.

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

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