# Adherence to home parenteral nutrition and/or intravenous fluid infusions in patients with chronic intestinal failure: A multicenter cross-sectional study

G. Abadie, David Seguy, S. M. Schneider, A. Jirka, D. Quilliot, P. Fayemendy, Pauline Rivière, F. Poullenot

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## To cite this version:

G. Abadie, David Seguy, S. M. Schneider, A. Jirka, D. Quilliot, et al., Adherence to home parenteral nutrition and/or intravenous fluid infusions in patients with chronic intestinal failure: A multicenter cross-sectional study. Nutrition, 2025, Nutrition, 138, pp.112831. 10.1016/j.nut.2025.112831. hal-05336182

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Applied nutritional investigation

# Adherence to home parenteral nutrition and/or intravenous fluid infusions in patients with chronic intestinal failure: A multicenter cross-sectional study

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Gabriel Abadie M.D. <sup>a</sup>, David Séguy Ph.D. <sup>b</sup>, Stéphane M. Schneider Ph.D. <sup>c</sup>, Adam Jirka M.D. <sup>d</sup>, Didier Quilliot Ph.D. <sup>e</sup>, Philippe Fayemendy M.D. <sup>f</sup>, Pauline Rivière Ph.D. <sup>a</sup>, Florian Poullenot M.D. <sup>a,*</sup>

## ARTICLE INFO

**Article History:**

Received 21 January 2025

Received in revised form 18 April 2025

Accepted 28 April 2025

**Keywords:**

Chronic intestinal failure

Home parenteral nutrition

Treatment adherence

## ABSTRACT

**Background:** Patients with chronic intestinal failure (CIF) often experience reduced quality of life due to the psychosocial constraints of home parenteral nutrition (HPN) and/or fluid infusions. Despite its major impact on daily life, adherence to these treatments remains poorly documented.

**Aim:** To assess adherence to HPN and/or fluid infusions in adult CIF patients and identify associated factors.

**Methods:** This multicenter, cross-sectional study included CIF patients from six French HPN centers. Eligible patients were ≥18 years old, on HPN and/or fluid infusions for ≥6 months with a stable regimen for ≥3 months. Adherence was assessed via self-reported questionnaires, physician and coordinating nurse evaluations, and phone interviews. Anxiety and depression were evaluated using the Hospital Anxiety and Depression Scale, and the Wake Forest Physician Trust Scale measured trust in the physician.

**Results:** A total of 126 patients were included; 82% had their infusions administered by nurses. Overall, 24% of patients exhibited poor adherence, with 9.5% negotiating treatment and 18% missing infusions. Poor adherence was associated with low weekly infusion volume (<7750 mL, odds ratio [OR] 3.31, 95% confidence interval [CI] [1.09–11.2], *P* = 0.041), high anxiety scores (OR 5.29, 95% CI [1.58–19.2], *P* = 0.008), and low trust in physicians (Wake Forest Physician Trust Scale, OR 0.90, 95% CI [0.82–0.98], *P* = 0.018). Coordinating nurses' perception strongly predicted adherence.

**Conclusions:** One in four CIF patients showed poor adherence. Those with low infusion volumes, high anxiety, or low physician trust require close monitoring. Coordinating nurses play a key role in identifying non-adherence.

© 2025 The Authors. Published by Elsevier Inc. This is an open access article under the CC BY license

(http://creativecommons.org/licenses/by/4.0/)

## Introduction

Chronic intestinal failure (CIF) is defined by the European Society for Clinical Nutrition and Metabolism (ESPEN) as "the reduction

of gut function below the minimum necessary for the absorption of macronutrients, micronutrients and/or water and electrolytes, such that intravenous supplementation is required to maintain health and/or growth" [1].

Home parenteral nutrition (HPN) is the standard treatment for CIF, ensuring long-term intravenous nutrient and fluid support but requiring substantial lifestyle adjustments [2]. CIF significantly impacts patients' quality of life (QoL) and places a heavy burden on their families due to psychosocial and financial constraints [3]. HPN and/or fluid infusions are typically administered overnight, one to seven times per week, via central venous access, either by patients themselves or by homecare nurses. QoL

**Abbreviations:** CI, confidence interval; CIF, chronic intestinal failure; CNIL, Commission Nationale de l'Informatique et des Libertés; ESPEN, European Society for Clinical Nutrition and Metabolism; GLP2, Glucagon-Like Peptide 2; HADS, Hospital Anxiety and Depression Scale; HPN, home parenteral nutrition; IQR, interquartile range; OR, odds ratio; QoL, quality of life; SBS, short bowel syndrome; WFPTS, Wake Forest Physician Trust Scale

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<footnote><sup>a</sup>Service de Gastroentérologie, Hôpital Haut-Lévèque, Pessac, France</footnote>

<footnote><sup>b</sup>Service de Nutrition, CHRU de Lille, Lille, France</footnote>

<footnote><sup>c</sup>Service de gastroentérologie et Nutrition clinique, CHU de Nice, Université Côte d'Azur, Nice, France</footnote>

<footnote><sup>d</sup>Equipe Transversale d'Assistance Nutritionnelle, CHU de Nantes, Nantes, France</footnote>

<footnote><sup>e</sup>Unité Transversale de Nutrition et Unité d'Assistance Nutritionnelle, Service d'Endocrinologie Diabétologie et Nutrition, CHRU de Nancy, Vandúuvre-lès-Nancy, France</footnote>

<footnote><sup>f</sup>Unité de Nutrition, CHU Dupuytren, Limoges, France</footnote>

<footnote>*Corresponding author.</footnote>

<footnote>E-mail address: florian.poullenot@chu-bordeaux.fr (F. Poullenot).</footnote>
is inversely related to the number of infusions required [4]. Indeed, HPN providers report that patients often seek to improve their QoL by reducing their dependence on parenteral nutrition, despite potential medical consequences. A recent study identified QoL as a top research priority in CIF for patients, families, and healthcare professionals [5]. The restrictions imposed by HPN and/or fluid infusions may contribute to treatment adherence challenges at home.

Treatment adherence is defined as the extent to which a person's behavior (taking medication, following a diet, and/or executing lifestyle changes) corresponds with agreed recommendations from a healthcare professionals [6]. This is a crucial issue for population health, both in terms of patients' QoL and health economics. Improving the effectiveness of adherence interventions could have a far greater impact on population health than any improvement in the quality of care. In recent decades, many studies have focused on therapeutic adherence in chronic diseases, with a poor adherence rate to long-term therapy that varies from 25% to 50% [6,7]. These studies are heterogeneous, both in terms of the studied treatments (mainly oral treatments) and the methods used to measure adherence. For example, poor adherence contributes to a lack of good blood pressure control in more than two-thirds of people living with hypertension [8], and ranges between 30% and 70% in asthma treatments [9].

In CIF, poor adherence can take many forms (missing infusions, not returning calls, or missing medical appointments), and very few data are available to date. Comparing adherence to oral treatments and intravenous therapy, such as HPN, may be difficult, with all the constraints implied. HPN (and/or fluid infusions) shares similarities with dialysis in chronic renal failure, requiring multiple weekly sessions and significantly impacting QoL. Adherence studies in dialysis report poor adherence rates of 24% to 34% [10,11], and we may expect a similar rate in poor adherence for infusions in a CIF population. Thus, this multicenter, cross-sectional study aimed to assess HPN and/or fluid infusions adherence in CIF patients, focusing on treatment negotiation during medical appointments (e.g., patients requesting fewer infusions) and adherence at home.

## Material and methods

### Study design

This multicenter, cross-sectional study was conducted in six certified French HPN centers: Bordeaux, Lille, Nice, Nantes, Nancy, and Limoges. Study design, protocol development, and patient enrollment took place between October 2022 and September 2023.

### Participants and recruitment

Eligible patients met the following criteria:

- Adults (≥18 years old) diagnosed with CIF.

- Treated with HPN and/or fluid infusions for at least 6 months.

- With stable parenteral support for at least 3 months.

- Patients receiving only hydration and electrolytes were included, provided they required long-term IV supplementation to maintain fluid and electrolyte balance, in accordance with the ESPEN definition of CIF [1].

Patients were excluded if they were unable to participate in a phone interview for any reason (e.g., deafness, severe neurocognitive impairment). They were recruited during medical appointments or day-care visits to HPN centers and enrolled after providing informed consent. In France, all patients on HPN receive home-delivered parenteral nutrition bags and infusion materials through home-care service providers. As a result, they never need to collect their supplies from a hospital pharmacy.

### Data collection

Data were collected through self-reported patient questionnaires, physician and coordinating nurse assessments, and follow-up phone interviews. All medical data were extracted from patient records and anonymized before analysis.

### Patient questionnaire

Patients completed a standardized questionnaire on the day of enrollment covering:

- Sociodemographic characteristics and HPN regimen.

- Perceived ability to negotiate HPN (Visual Analog Scale, 0–10): 0 = "I cannot negotiate, only the physician decides" → 10 = "I alone decide my HPN prescription."

- Hospital Anxiety and Depression Scale (HADS) [12]:

- 14-item validated scale assessing anxiety (7 items) and depression (7 items).

- A subscale score >10 indicates significant anxiety or depressive symptoms.

- Wake Forest Physician Trust Scale (WFPTS) [13]:

- 10-item scale measuring trust in the specialist physician (score range: 10–50, with 50 indicating complete trust).

### Physician questionnaire

Physicians had to fill out a questionnaire on the enrollment day, after the medical appointment with the patient, covering:

- Perceived patient negotiation ability (Visual Analog Scale, 0–10): 0 = "I refuse to negotiate HPN" → 10 = "The patient alone decides their HPN treatment."

- "Ideal" versus "Final" HPN prescription: Physicians documented the recommended (ideal) HPN regimen versus the final prescription postconsultation to assess negotiation impact.

### Coordinating nurse questionnaire

Coordinating nurses had to fill out a questionnaire on the enrollment day covering:

- HPN logistics

- Coordinating nurse perception of HPN and/or fluid infusions adherence (Visual Analog Scale, 0–10): 0 = "I think that the patient follows treatment perfectly" → 10 = "I think that the patient does not follow HPN at all."

- Patient solicitation of HPN center (Visual Analog Scale, 0–10): 0 = "Under- or over-solicitation" → 10 = "Appropriate solicitation." For example, under-solicitating the HPN center would be to conceal a medical problem concerning the catheter, preventing parenteral nutrition from being carried out, and over-solicitating would be calling the HPN center for trivial matter unrelated to medical issues.

### Phone interview (8 weeks postenrollment)

Patients were contacted for additional questions regarding adherence to HPN at home, including missed infusions. All phone interviews were conducted by a single investigator (GA) to ensure consistency.

### Objectives

The primary objective was to assess adherence to HPN and/or fluid infusions in patients with CIF by evaluating both treatment negotiation during medical appointments and adherence at home.

- Negotiation was assessed by measuring the 10% discrepancy between the "ideal" HPN and/or fluid infusions prescription (based on nutritional needs, disease status, and tolerance) and the "final" prescription given after consultation.

- Home adherence was evaluated through a phone interview, comparing what patients reported receiving versus their prescribed regimen, identifying any 10% discrepancy in infusion volume over a 3-month period.

The secondary objectives were to:

- Assess the coordinating nurse's perception of patient adherence to HPN and/or fluid infusions.

- Identify symptoms of anxiety and depression in the study population (HADS).

- Evaluate trust in the specialist physician (WFPTS).

- Identify factors associated with poor adherence to HPN and/or fluid infusions.
## Outcome measures

**Primary outcome:** The primary endpoint was composite (i.e., composed of several parts). We defined poor treatment adherence to HPN and/or fluid infusions as:

- Negotiation: ≥10% difference between the “ideal” and “final” HPN and/or fluid infusions prescription (weekly volume in mL).

- and/or

- Missing infusions: ≥10% difference between prescribed versus self-reported HPN and/or fluid infusions volume (3-month period).

## Secondary outcomes

- Coordinating nurse perception of adherence (Visual Analog Scale).

- HADS screening for anxiety and depressive symptoms.

- WFPTS measurement of physician trust.

- Factors statistically associated with poor adherence.

## Statistical analysis

Continuous data were expressed as median (interquartile range [IQR]), and qualitative variables were expressed as percentage. Fisher's exact test and chi-square test were used to compare patients with good versus poor adherence to HPN and/or fluid infusions for categorical variables, and Wilcoxon rank sum test for continuous variables. Factors associated with poor adherence were evaluated with a univariable logistic regression with odds ratio (OR) and a 95% confidence interval (CI). Continuous variables were dichotomized at the median when necessary. All variables with a *P* value of <0.20 were included in a multivariable logistic regression model. Variables were selected using a backward stepwise elimination process for the final multivariable model. Two-sided statistical tests were used for all analyses. A *P* value of <0.05 was considered significant. Statistical analyses were performed using R version 3.5.1 (R Development Core Team).

## Ethics

This study was conducted in accordance with the principles of good clinical practice and the Declaration of Helsinki at all times. Study protocol was declared to the CNIL (Commission Nationale de l'Informatique et des Libertés) n°2226985 as required by national recommendations and was approved by our Institutional Review Board.

# Results

## Patients' characteristics

Overall, 100 and 26 patients were enrolled in six HPN centers. Their characteristics are presented in Table 1. Seventy-four were female (59%), and the median (IQR) age was 61.5 years old (48.0–71.8). Sixty-two patients were retired (49%). According to the ESPEN classification [1], the main causes of CIF were short bowel syndrome (89 patients, 71%) and dysmotility (23 patients, 18%). Sixty-eight patients had an ostomy (54%). The median (IQR) duration of HPN was 46.4 months (22.3–90.5) with a median (IQR) number of days per week with HPN of 4 (3.0–6.8) and a median (IQR) volume of HPN per week of 7.75 L (4.85–14.00). Forty-nine patients were treated with compounded nutrition (39%), and 70 (56%) received both hydration and HPN. Fifteen patients (12%) received Glucagon-Like Peptide 2 analogs. HPN and/or fluid infusions were administered by nurses for 100 and three patients (82%) and by the patients themselves for 23 patients (18%). No patient had PN administered by a family member. The type of catheter used was a tunneled catheter for 56 patients (44%), a totally implanted port for 36 patients (29%), and a peripherally inserted central catheter for 36 patients (26%). Seventy-five patients had already experienced catheter-related bacterial infection (at anytime prior to the study enrollment date) (60%), and 10 patients had been hospitalized in the last 3 months (before the study enrollment date) (7.9%).

<table><caption>**Table 1**
Patients' characteristics</caption><thead><tr><th>Characteristics</th><th>N = 126*</th></tr></thead><tbody><tr><td><strong>Sex</strong></td><td></td></tr><tr><td>Male</td><td>52 (41%)</td></tr><tr><td>Female</td><td>74 (59%)</td></tr><tr><td><strong>Age</strong></td><td>61.5 (48.0–71.8)</td></tr><tr><td><strong>Center</strong></td><td></td></tr><tr><td>Bordeaux</td><td>44 (35%)</td></tr><tr><td>Lille</td><td>34 (27%)</td></tr><tr><td>Limoges</td><td>6 (4.8%)</td></tr><tr><td>Nancy</td><td>7 (5.6%)</td></tr><tr><td>Nice</td><td>20 (16%)</td></tr><tr><td>Nantes</td><td>15 (12%)</td></tr><tr><td><strong>Marital status</strong></td><td></td></tr><tr><td>In a relationship</td><td>71 (56%)</td></tr><tr><td>Single</td><td>55 (44%)</td></tr><tr><td><strong>Profession</strong></td><td></td></tr><tr><td>In employment</td><td>9 (7.1%)</td></tr><tr><td>On sick leave</td><td>11 (8.7%)</td></tr><tr><td>Unemployed</td><td>3 (2.4%)</td></tr><tr><td>Retired</td><td>62 (49%)</td></tr><tr><td>Student</td><td>5 (4.0%)</td></tr><tr><td>Other</td><td>36 (29%)</td></tr><tr><td><strong>Primary pathophysiologic mechanism (type)</strong></td><td></td></tr><tr><td>Fistula (F)</td><td>2 (1.6%)</td></tr><tr><td>Mucosal disease (MD)</td><td>3 (2.4%)</td></tr><tr><td>Dysmotility (MOT)</td><td>23 (18%)</td></tr><tr><td>MOT + MD</td><td>1 (0.8%)</td></tr><tr><td>Obstruction (O)</td><td>1 (0.8%)</td></tr><tr><td>Short bowel syndrome (SBS)</td><td>89 (71%)</td></tr><tr><td>SBS + MOT</td><td>7 (5.6%)</td></tr><tr><td><strong>SBS (type)</strong></td><td></td></tr><tr><td>No SBS</td><td>29 (23%)</td></tr><tr><td>Type 1</td><td>52 (41%)</td></tr><tr><td>Type 2</td><td>36 (29%)</td></tr><tr><td>Type 3</td><td>9 (7.1%)</td></tr><tr><td><strong>Ostomy</strong></td><td></td></tr><tr><td>Enterostomy</td><td>54 (43%)</td></tr><tr><td>Enterostomy + colostomy</td><td>2 (1.6%)</td></tr><tr><td>Colostomy</td><td>12 (9.5%)</td></tr><tr><td>No ostomy</td><td>58 (46%)</td></tr><tr><td>HPN and/or fluid infusions duration (mo)</td><td>46.4 (22.3–90.5)</td></tr><tr><td>Number of HPN and/or fluid infusions days per week</td><td>4.0 (3.0–6.8)</td></tr><tr><td>HPN and/or fluid infusions volume per week (mL)</td><td>7750.0 (4850.0–14 000.0)</td></tr><tr><td>Infusion time (h)</td><td>12.0 (12.0–14.0)</td></tr><tr><td><strong>Type of parenteral nutrition</strong></td><td></td></tr><tr><td>No parenteral nutrition</td><td>13 (10%)</td></tr><tr><td>Standard parenteral nutrition</td><td>64 (51%)</td></tr><tr><td>Customized parenteral nutrition</td><td>49 (39%)</td></tr><tr><td><strong>GLP-2 analogs</strong></td><td></td></tr><tr><td>Yes</td><td>15 (12%)</td></tr><tr><td>No</td><td>111 (88%)</td></tr><tr><td><strong>Central venous access</strong></td><td></td></tr><tr><td>Totally implanted port</td><td>36 (29%)</td></tr><tr><td>Tunneled catheter</td><td>56 (44%)</td></tr><tr><td>PICC-line</td><td>33 (26%)</td></tr><tr><td>The patient doesn't know</td><td>1 (0.8%)</td></tr><tr><td><strong>HPN and/or fluid infusions</strong></td><td></td></tr><tr><td>By a nurse</td><td>103 (82%)</td></tr><tr><td>By the patient</td><td>23 (18%)</td></tr><tr><td><strong>History of catheter-related infection</strong></td><td></td></tr><tr><td>Yes</td><td>75 (60%)</td></tr><tr><td>No</td><td>51 (40%)</td></tr><tr><td>HADS (anxiety subscore)</td><td>6.0 (4.0–9.0)</td></tr><tr><td><strong>Pathological HADS anxiety subscore (&gt;10)</strong></td><td></td></tr><tr><td>Yes</td><td>26 (21%)</td></tr><tr><td>No</td><td>100 (79%)</td></tr><tr><td>HADS (depression subscore)</td><td>6.0 (3.0–9.0)</td></tr><tr><td><strong>Pathological HADS depression subscore (&gt;10)</strong></td><td></td></tr><tr><td>Yes</td><td>17 (13%)</td></tr><tr><td>No</td><td>109 (87%)</td></tr></tbody><tfoot><tr><td colspan="2">(continued)</td></tr></tfoot></table>
<table><caption>**Table 1 (Continued)**</caption><thead><tr><th>Characteristics</th><th>N = 126*</th></tr></thead><tbody><tr><td>WFPTS score</td><td>47.0 (43.0–50.0)</td></tr><tr><td>Patients' negotiation (analog visual scale)</td><td>3.0 (0.0–5.0)</td></tr><tr><td>Physicians' negotiation (analog visual scale)</td><td>5.5 (3.0–8.0)</td></tr><tr><td>Coordinating nurses' perception of patients' adhesion</td><td>0.0 (0.0–2.0)</td></tr><tr><td>Coordinating nurses' perception of patients' solicitation</td><td>9.0 (7.0–10.0)</td></tr><tr><td>Problems with the infusion pump</td><td></td></tr><tr><td>Yes</td><td>15 (12%)</td></tr><tr><td>No</td><td>111 (88%)</td></tr><tr><td>Volume of HPN and/or fluid infusions left at the end of infusion</td><td></td></tr><tr><td>None</td><td>61 (48%)</td></tr><tr><td>&lt;1/4</td><td>64 (51%)</td></tr><tr><td>&gt;1/4</td><td>1 (0.8%)</td></tr><tr><td>Hospitalization within the last 3 mo</td><td></td></tr><tr><td>Yes</td><td>10 (7.9%)</td></tr><tr><td>No</td><td>116 (92%)</td></tr><tr><td>Missing infusions</td><td></td></tr><tr><td>Yes</td><td>34 (27%)</td></tr><tr><td>No</td><td>92 (73%)</td></tr><tr><td>Infusions stopped before the end</td><td></td></tr><tr><td>Yes</td><td>7 (5.6%)</td></tr><tr><td>No</td><td>119 (94%)</td></tr></tbody></table>

## Adherence to HPN and/or fluid infusions

In this study, poor adherence to HPN and/or fluid infusions concerned 30 patients (24%): 12 (9.5%) patients for negotiating the HPN and/or fluid infusions prescription, and 23 (18%) patients for missing infusions. 5 patients (3.9%) both negotiated their prescription and missed infusions (Fig. 1). Among patients with poor adherence, median (IQR) number of days missing infusions in the last 3 months was 6 [3–8,9].

Fisher's exact test (Table 2) showed that patients who negotiate their treatment were statistically more likely to miss infusions at home (P value = 0.043). No statistically significant difference was observed between patients receiving compounded bags and those receiving ready-to-use bags (P value = 0.145), between patients receiving extra hydration and those who did not (P value = 0.73), between patients receiving full parenteral nutrition and those receiving IV fluids only (P value = 0.23), or depending on the type of venous access (P value = 0.34).

<table><caption>**Table 2**
Negotiation and missing infusions</caption><thead><tr><th rowspan="2"></th><th colspan="2">Missing infusions (&gt; 10%)</th><th rowspan="2">Total</th><th rowspan="2">P value*</th></tr><tr><th>No</th><th>Yes</th></tr></thead><tbody><tr><td>Negotiation (&gt; 10%)</td><td></td><td></td><td></td><td>0.043</td></tr><tr><td>No</td><td>96 (84%)</td><td>18 (16%)</td><td>114 (100%)</td><td></td></tr><tr><td>Yes</td><td>7 (58%)</td><td>5 (42%)</td><td>12 (100%)</td><td></td></tr><tr><td>Total</td><td>103 (82%)</td><td>23 (18%)</td><td>126 (100%)</td><td></td></tr></tbody></table>

## Factors associated with poor and good adherence to HPN and/or fluid infusions

In univariate analysis (Table 3), poor adherence to HPN and/or fluid infusions was associated with a weekly infusion volume of less than 7750 mL (OR, 3, 95% CI, [1.28–7.53], P value = 0.011), a pathological HADS score (subpart for anxiety symptoms: OR, 4.88, 95% CI, [1.93–12.6], P value <0.001, subpart for depressive symptoms: OR, 4.71, 95% CI, [1.62–14], P value = 0.005), an evaluation of the coordinating nurse (on the analog visual scale) suggesting a poor follow-up of the medical prescription (OR, 5, 95% CI, [2.06–12.4], P value <0.001) and a strong impression of the possibility of negotiation on the part of the patient (OR, 4.58, 95% CI, [1.91–12], P value <0.001).

In the same univariate analysis, good adherence to HPN and/or fluid infusions was associated with a history of catheter-related bacterial infection (OR, 0.36, 95% CI, [0.13–0.88], P value = 0.024), an increased WFPTS score (OR, 0.87, 95% CI, [0.80–0.94], P value <0.001) and an evaluation of the coordinating nurse suggesting that the patient's requests to the HPN center were quite appropriate (OR, 0.85, 95% CI, [0.73–0.99], P value = 0.040).

In multivariate analysis (Table 4), a weekly infusion volume of less than 7750 mL (OR, 3.31, 95% CI, [1.09–11.2], P value = 0.041), a high score on the patient analog visual scale for negotiating (OR, 7.29, 95% CI, [2.37–27.1], P value = 0.001), and a pathological HADS score (subpart for anxiety symptoms: OR, 5.29, 95% CI, [1.58–19.2], P value = 0.008), were independently associated to poor adherence to HPN and/or fluid infusions. A decrease WFPTS score (OR, 0.90, 95% CI, [0.82–0.98], P value = 0.018) was independently associated to good adherence to HPN and/or fluid infusions.

<figure><img src="image_5.png" /><figcaption>**Fig. 1.** Adherence to home parenteral nutrition.</figcaption></figure>

<footnote>*Median (IQR) or frequency (%).</footnote>

<footnote>*Fisher's exact test.</footnote>
<table><caption>**Table 3**
Factors associated with poor adherence to HPN and/or fluid infusions in univariate analysis</caption><thead><tr><th>Characteristics</th><th>OR</th><th>95% CI</th><th>P value</th></tr></thead><tbody><tr><td>Sex</td><td>1.07</td><td>0.47, 2.52</td><td>0.9</td></tr><tr><td>Age</td><td>0.99</td><td>0.96, 1.01</td><td>0.3</td></tr><tr><td>Center</td><td></td><td></td><td></td></tr><tr><td>Bordeaux</td><td>—</td><td>—</td><td></td></tr><tr><td>Lille</td><td>1.01</td><td>0.32, 3.05</td><td></td></tr><tr><td>Limoges</td><td>0.78</td><td>0.04, 5.68</td><td></td></tr><tr><td>Nancy</td><td>0.65</td><td>0.03, 4.51</td><td></td></tr><tr><td>Nice</td><td>1.67</td><td>0.48, 5.54</td><td></td></tr><tr><td>Nantes</td><td>2.59</td><td>0.71, 9.29</td><td></td></tr><tr><td>Marital status</td><td>1.40</td><td>0.61, 3.21</td><td>0.4</td></tr><tr><td>Profession</td><td>0.94</td><td>0.72, 1.25</td><td>0.7</td></tr><tr><td>Primary pathophysiologic mechanism (type)</td><td></td><td></td><td>0.6</td></tr><tr><td>Short bowel syndrome (SBS)</td><td>1.33</td><td>0.51, 3.94</td><td></td></tr><tr><td>Other</td><td>—</td><td>—</td><td></td></tr><tr><td>SBS (type)</td><td>1.06</td><td>0.66, 1.70</td><td>0.8</td></tr><tr><td>Ostomy</td><td></td><td></td><td>0.4</td></tr><tr><td>Yes</td><td>0.68</td><td>0.30, 1.55</td><td></td></tr><tr><td>No</td><td>—</td><td>—</td><td></td></tr><tr><td>HPN and/or fluid infusions duration (mo)</td><td>1.00</td><td>1.00, 1.01</td><td>0.5</td></tr><tr><td>Number of HPN and/or fluid infusions days per week</td><td>0.91</td><td>0.76, 1.09</td><td>0.3</td></tr><tr><td>HPN and/or fluid infusions volume per week (mL)</td><td></td><td></td><td><strong>0.011</strong></td></tr><tr><td>&lt;or =7750 mL</td><td>3.00</td><td>1.28, 7.53</td><td></td></tr><tr><td>&gt;7750 mL</td><td>—</td><td>—</td><td></td></tr><tr><td>Infusion time (h)</td><td>0.96</td><td>0.79, 1.20</td><td>0.7</td></tr><tr><td>GLP-2 analogs</td><td>0.84</td><td>0.26, 3.23</td><td>0.8</td></tr><tr><td>Central venous access</td><td>1.12</td><td>0.67, 1.83</td><td>0.7</td></tr><tr><td>HPN infusions (nurse or patient)</td><td>0.42</td><td>0.09, 1.36</td><td>0.2</td></tr><tr><td>History of catheter-related infection</td><td>0.36</td><td>0.13, 0.88</td><td><strong>0.024</strong></td></tr><tr><td>Pathological HADS anxiety subscore (&gt;10)</td><td></td><td></td><td><strong>&lt;0.001</strong></td></tr><tr><td>Yes</td><td>4.88</td><td>1.93, 12.6</td><td></td></tr><tr><td>No</td><td>—</td><td>—</td><td></td></tr><tr><td>Pathological HADS depression subscore (&gt;10)</td><td></td><td></td><td><strong>0.005</strong></td></tr><tr><td>Yes</td><td>4.71</td><td>1.62, 14.0</td><td></td></tr><tr><td>No</td><td>—</td><td>—</td><td></td></tr><tr><td>WFPTS score</td><td>0.87</td><td>0.80, 0.94</td><td><strong>&lt;0.001</strong></td></tr><tr><td>Patients' negotiation (analog visual scale)</td><td></td><td></td><td><strong>&lt;0.001</strong></td></tr><tr><td>Analog visual scale &lt; or =3</td><td>—</td><td>—</td><td></td></tr><tr><td>Analog visual scale &gt;3</td><td>4.58</td><td>1.91, 12.0</td><td></td></tr><tr><td>Physicians' negotiation (analog visual scale)</td><td></td><td></td><td>0.7</td></tr><tr><td>Analog visual scale &lt; or =5.5</td><td>—</td><td>—</td><td></td></tr><tr><td>Analog visual scale &gt;5.5</td><td>1.19</td><td>0.52, 2.74</td><td></td></tr><tr><td>Coordinating nurses' perception of patients' adhesion</td><td></td><td></td><td><strong>&lt;0.001</strong></td></tr><tr><td>Analog visual scale &lt; or =2</td><td>—</td><td>—</td><td></td></tr><tr><td>Analog visual scale &gt;2</td><td>5.00</td><td>2.06, 12.4</td><td></td></tr><tr><td>Coordinating nurses' perception of patients' solicitation</td><td>0.85</td><td>0.73, 0.99</td><td><strong>0.040</strong></td></tr><tr><td>Problems with the infusion pump</td><td></td><td></td><td>0.7</td></tr><tr><td>Yes</td><td>0.78</td><td>0.17, 2.67</td><td></td></tr><tr><td>No</td><td>—</td><td>—</td><td></td></tr><tr><td>Volume of HPN and/or fluid infusions left at the end of infusion</td><td>1.01</td><td>0.46, 2.12</td><td>&gt;0.9</td></tr><tr><td>Hospitalization within the last 3 mo</td><td></td><td></td><td>0.060</td></tr><tr><td>Yes</td><td>3.64</td><td>0.95, 14.1</td><td></td></tr><tr><td>No</td><td>—</td><td>—</td><td></td></tr></tbody></table>

Values in bold correspond to statistically significant results (with p<0.05).

CI, confidence interval; OR, odds ratio.

## Discussion

In our multicenter cross-sectional study, the rate of poor adherence to HPN and/or fluid infusions in patients with CIF was 24%, aligning with most studies on treatment adherence in chronic diseases. This is particularly comparable to adherence rates in dialysis (24%-34%) [10,11], which shares many constraints with HPN. In contrast, adherence rates in other chronic diseases, such as diabetes, are more heterogeneous. A meta-analysis of adherence to diabetes treatment found adherence rates ranging from 38.5% to 93.1% [14].

The higher rate of poor adherence in our study compared to a 1980 monocentric study from Minnesota [15] (which reported a median compliance score of 95%) may be explained by

methodological differences. That study primarily assessed technical adherence to HPN, particularly aseptic techniques, whereas our study focuses on overall adherence, including patient negotiation and treatment follow-through. Furthermore, comparing adherence over four decades is challenging due to evolving patient care practices and HPN management.

Adherence to HPN and/or fluid infusions encompasses multiple aspects, including adherence to dietary restrictions, oral treatments related to the underlying disease, and proper care of the central venous catheter. These elements are interconnected. Interestingly, our study found that patients with poor adherence were less likely to have a history of central venous catheter infections. This may be because they missed more infusions or, conversely, because prior infections heightened their vigilance regarding
<caption>**Table 4**</caption>

Factors associated with poor adherence to HPN and/or fluid infusions in multivariate analysis

<table><thead><tr><th>Characteristics</th><th>OR</th><th>95% CI</th><th>P value</th></tr></thead><tbody><tr><td>HPN and/or fluid infusions volume per week (mL)</td><td></td><td></td><td></td></tr><tr><td>&lt;or =7750 mL</td><td>3.31</td><td>1.09, 11.2</td><td><strong>0.041</strong></td></tr><tr><td>&gt;7750 mL</td><td>—</td><td>—</td><td></td></tr><tr><td>History of catheter-related infection</td><td>0.34</td><td>0.09, 1.06</td><td>0.076</td></tr><tr><td>Pathological HADS anxiety subscore (&gt;10)</td><td></td><td></td><td></td></tr><tr><td>Yes</td><td>5.29</td><td>1.58, 19.2</td><td><strong>0.008</strong></td></tr><tr><td>No</td><td>—</td><td>—</td><td></td></tr><tr><td>Pathological HADS depression subscore (&gt;10)</td><td></td><td></td><td></td></tr><tr><td>Yes</td><td>2.91</td><td>0.70, 12.8</td><td>0.14</td></tr><tr><td>No</td><td>—</td><td>—</td><td></td></tr><tr><td>WFPTS score</td><td>0.90</td><td>00.82, 0.98</td><td><strong>0.018</strong></td></tr><tr><td>Patients' negotiation (analog visual scale)</td><td></td><td></td><td></td></tr><tr><td>Analog visual scale &lt; or =3</td><td>—</td><td>—</td><td></td></tr><tr><td>Analog visual scale &gt;3</td><td>7.29</td><td>2.37, 27.1</td><td><strong>0.001</strong></td></tr></tbody></table>

Values in bold correspond to statistically significant results (with p<0.05).

CI, confidence interval; OR, odds ratio.

catheter care. These nuances justify our choice of a composite primary endpoint, which integrates both treatment negotiation and adherence at home.

In our study, 18% of patients missed a significant number of infusions, with poor adherence defined as receiving <90% of the prescribed HPN and/or fluid infusions. There is insufficient evidence regarding how many missed infusions result in complications. Indeed, missing infusions may lead to dehydration, electrolyte imbalances, and undernutrition, potentially increasing the risk of hospitalizations. While our study did not directly evaluate clinical consequences, prior research on adherence to chronic therapies suggests that poor adherence can negatively impact patient outcomes [16]. Although our study was not designed to assess clinical consequences, we retrospectively reviewed medical records of the 23 patients who missed infusions. No hospitalizations or acute complications directly attributable to non-adherence were observed during the 3-month observation period. The median number of missed infusion days in this group was 6 over 3 months (i.e., less than 2 days per month), suggesting a limited exposure to risk. Given the modest volume discrepancies, the short follow-up, and the small number of non-adherent patients, detecting measurable clinical consequences would likely require a larger cohort and a longer observation period. These findings should therefore be interpreted with caution. Future prospective studies should assess whether non-adherence to HPN and/or fluid infusions correlates with metabolic instability, weight loss, or increased healthcare utilization.

Interestingly, our analysis revealed that the mode of infusion— whether administered by the patient themselves or by a nurse— was not significantly associated with adherence to HPN and/or fluid infusions (OR, 0.42, 95% CI, [0.09–1.36], P value = 0.2). This suggests that the act of self-administration versus nurse-administered infusions does not inherently influence adherence behaviors.

For the negotiation component, 9.5% of patients exhibited poor adherence, which was higher than expected. This highlights that patients with CIF actively seek to reduce their infusions to improve their QoL, despite potential medical risks. Adherence is a dynamic process influenced by multiple factors, including socioeconomic status, disease severity, treatment burden, and the physician-patient relationship. As our study was based on a single medical appointment, we may underestimate the true extent of patient negotiation over time. A sociological approach could provide deeper insight into the factors driving negotiation behaviors in CIF patients.

Our findings showed that a pathological HADS score was significantly associated with poor adherence to HPN, supporting the link between mental health and adherence behaviors. However, the number of weekly infusions, known to impact QoL, was not linked to poor adherence [4]. On the contrary, poor adherence was associated with smaller volumes of HPN and/or fluid infusions per week. One possible explanation is that patients requiring smaller volumes of HPN and/or fluid infusions may perceive a lower dependency on treatment, leading them to adjust their infusions without medical advice. This raises the question of whether some patients in this category may be receiving more HPN and/or fluid infusions than strictly necessary. This result could also be explained by the fact that patients with a higher HPN volume requirement have a more severe disease, and a breach in treatment could lead to more adverse consequences.

Another key finding of our study is the link between the physician-patient relationship and HPN and/or fluid infusions adherence. Over the past decades, the physician-patient relationship has evolved into a more collaborative model. Our results indicate that patients who trust their physician are more likely to adhere to HPN, while those who negotiate their treatment are at higher risk of poor adherence. This aligns with previous studies showing that greater trust in physicians correlates positively with treatment adherence [17].

A strength of our study is the consideration of coordinating nurses' perceptions, given their close interaction with patients and collaboration with homecare nurses and service providers. Their assessment of adherence and patient solicitations was significantly associated with actual adherence behaviors and appeared more accurate than physicians' assessments. This underscores the crucial role of multidisciplinary teams in tertiary HPN centers. While coordinating nurses are well-positioned to detect adherence issues, effective management requires a broader team approach involving physicians, dietitians, pharmacists, and psychologists. Structured patient education, adherence monitoring programs, and psychosocial support interventions could further enhance long-term adherence. Future studies should also explore the specific contributions of dietitians and pharmacists in optimizing adherence strategies.

The main limitation of this study is that treatment adherence was assessed using subjective methods, such as self-reported questionnaires and phone interviews. However, this approach remains the most meaningful for patients, as it allows for a direct assessment of their perceptions and experiences. Nevertheless, reliance on self-reported data may introduce recall bias and social desirability bias, potentially leading patients to overestimate their adherence. To mitigate this limitation, we included assessments from physicians and coordinating nurses, providing additional perspectives on adherence behaviors. Although this study was conducted across six nationally certified HPN centers, potential differences in local management protocols and patient education strategies may have influenced adherence, affecting the generalizability of our findings. However, practices among certified French centers remain relatively homogeneous, which likely reduces inter-center variability. In addition, although we performed an exploratory review of available records for non-adherent patients, the number of missed infusions was low, and the short follow-up period limited the ability to detect clinical consequences. Therefore, the impact of non-adherence on metabolic or nutritional outcomes could not be reliably assessed.

The World Health Organization report on adherence to long-term therapies states that no single gold-standard method exists for measuring adherence, but combining subjective and objective measures is recommended [6]. In this context, homecare service providers, who are closely involved in patient care, could play a
key role in monitoring adherence, and future studies should con-
sider integrating their assessments. Another promising approach
involves connected infusion pumps, which allow real-time moni-
toring of HPN and/or fluid infusions administration. However,
while these devices could enhance adherence tracking, they also
raise ethical concerns regarding patient autonomy and the physi-
cian-patient relationship, which warrant further investigation.

Conclusion

This study demonstrates that nearly one in four CIF patients
exhibit poor adherence to HPN and/or fluid infusions, either
through negotiating their treatment or missing infusions. Key risk
factors include low weekly infusion volume, active negotiation,
low physician trust, and anxiety-depressive symptoms. From a
clinical perspective, early identification of at-risk patients is crucial
to prevent potential complications such as dehydration, electrolyte
imbalances, and hospitalizations. Coordinating nurses, due to their
close patient interactions, play a pivotal role in adherence monitor-
ing. Integrating multidisciplinary teams—including physicians, die-
titians, pharmacists, and psychologists—could enhance adherence
support and patient education. Future research should focus on
assessing the direct clinical impact of poor adherence on patient
outcomes and developing tailored interventions, such as educa-
tional programs and targeted psychosocial support strategies.
These efforts will be essential in optimizing long-term manage-
ment and improving patient QoL.

Declaration of competing interest

The authors declare that they have no known competing finan-
cial interests or personal relationships that could have appeared to
influence the work reported in this article.

CRediT authorship contribution statement

**Gabriel Abadie:** Writing – review & editing, Writing – original draft, Methodology, Investigation, Data curation, Conceptualization. **David Séguy:** Writing – review & editing. **Stéphane M. Schneider:** Writing – review & editing, Validation. **Adam Jirka:** Writing – review & editing. **Didier Quilliot:** Writing – review & editing. **Philippe Fayemendy:** Writing – review & editing. **Pauline Rivière:** Writing – review & editing. **Florian Poullenot:** Writing – review & editing, Validation, Supervision, Project administration, Methodology, Investigation, Data curation, Conceptualization.

Clinical relevancy statement

One in four patients with CIF is poorly adherent to HPN.

References

[1] Pironi L, Cuerda C, Jeppesen PB, Joly F, Jonkers C, Krznarić Ž, et al. ESPEN guideline on chronic intestinal failure in adults–update 2023. Clin Nutr 2023;42(10):1940–2021.

[2] Pironi L, Goulet O, Buchman A, Messing B, Gabe S, Candusso M, et al. Outcome on home parenteral nutrition for benign intestinal failure: a review of the literature and benchmarking with the European prospective survey of ESPEN. Clin Nutr 2012;31(6):83145.

[3] Castinel J, Pellet G, Laharie D, Zerbib F, Silvain C, Wilsius E, et al. Male gender is associated with informal caregiver burden in patients with chronic intestinal failure treated with home parenteral nutrition. J Parenter Enteral Nutr 2022;46(7):1593601.

[4] Burden ST, Jones DJ, Gittins M, Ablett J, Taylor M, Mountford C, et al. Needs-based quality of life in adults dependent on home parenteral nutrition. Clin Nutr 2019;38(3):14338.

[5] Sowerbutts AM, Lal S, Pironi L, Jones D, French C, Riis M, et al. Patients, family members and healthcare professionals' top ten research priorities for adults receiving home parenteral nutrition for malignant or benign disease. Clin Nutr ESPEN 2023;53:1518.

[6] Sabaté E, World Health Organization. Adherence to long-term therapies: evidence for action éditeurs. Geneva: World Health Organization; 2003. p. 198.

[7] DiMatteo MR. Variations in patients' adherence to medical recommendations: a quantitative review of 50 years of research. Med Care 2004;42(3):2009.

[8] Black HR, Cohen JD, Kaplan NM, Ferdinand KC, Chobanian AV, Dustan HP, et al. The sixth report of the Joint National Committee on prevention, detection, evaluation, and treatment of high blood pressure. Arch Intern Med 1997;157(21):241346.

[9] Bender B, Milgrom H, Rand C. Nonadherence in asthmatic patients: is there a solution to the problem? Ann Allergy Asthma Immunol 1997;79(3):17787.

[10] Freire De Medeiros CMM, Arantes EP, Tajra RDDP, Santiago HR, Carvalho AF, Libório AB. Resilience, religiosity and treatment adherence in hemodialysis patients: a prospective study. Psychol Health Med 2017;22(5):5707.

[11] Ozen N, Cinar FI, Askin D, Mut D, Turker T. Nonadherence in hemodialysis patients and related factors: a multicenter study. J Nurs Res 2019;27(4):e36.

[12] Bjelland I, Dahl AA, Haug TT, Neckelmann D. The validity of the hospital anxiety and depression scale. J Psychosom Res 2002;52(2):6977.

[13] Hall MA, Zheng B, Dugan E, Camacho F, Kidd KE, Mishra A, et al. Measuring patients' trust in their primary care providers. Med Care Res Rev 2002;59(3):293318.

[14] Krass I, Schieback P, Dhippayom T. Adherence to diabetes medication: a systematic review. Diabet Med 2015;32(6):72537.

[15] Hughes BA, Fleming CR, Berkner S, Gaffron R. Patient compliance with a home parenteral nutrition program. JPEN J Parenter Enteral Nutr 1980;4(1):124.

[16] DiMatteo MR. Variations in patients' adherence to medical recommendations: a quantitative review of 50 years of research. Med Care 2004;42(3):200–9.

[17] Hall MA, Dugan E, Zheng B, Mishra AK. Trust in physicians and medical institutions: what is it, can it be measured, and does it matter? Milbank Q 2001;79(4):61339.