Next Article in Journal
Evaluating Clinical Pharmacist Interventions in a Tertiary Care Hospital: A Retrospective Study from Saudi Arabia
Previous Article in Journal
Advancements and Future Perspectives of Human Papillomavirus (HPV) Vaccination in Latin America: Insights from Recent Decades
 
 
Font Type:
Arial Georgia Verdana
Font Size:
Aa Aa Aa
Line Spacing:
Column Width:
Background:
Article

Tracking Anxiety in Chronic Intestinal Failure: The Role of Time in Healing

Internal Medicine and Clinical Nutrition, Department of Clinical Medicine and Surgery, Federico II University Hospital, 80131 Naples, Italy
*
Author to whom correspondence should be addressed.
Healthcare 2025, 13(19), 2503; https://doi.org/10.3390/healthcare13192503
Submission received: 3 June 2025 / Revised: 29 September 2025 / Accepted: 29 September 2025 / Published: 2 October 2025

Abstract

Introduction: Chronic intestinal failure (CIF) and the resulting dependence on home parenteral nutrition (HPN) often occur abruptly, profoundly disrupting the daily lives of patients and their caregivers. Both groups face persistent psychological and relational challenges, yet evidence on their long-term mental-health trajectories remains scarce. This study aimed to assess the progression of anxiety symptoms over 12 months in CIF patient–caregiver pairs, and to explore whether participation in a systemic–relational psychotherapy program could influence these outcomes. Methods: The Hamilton Anxiety Rating Scale (HAM-A) was administered to all participating patient–caregiver pairs, who were also invited to attend free biweekly psychotherapy sessions for one year. Pairs who accepted (Group Y) were compared with those who declined (Group N). Results: At baseline, both patients and caregivers in both groups exhibited high anxiety levels. Group Y (n = 10) patients had significantly higher total HAM-A scores than Group N (n = 40) patients (p = 0.048); a similar, non-significant trend was observed among caregivers. Emotional and somatic component scores remained largely unchanged at 6 and 12 months, regardless of group allocation. Conclusions: CIF imposes a substantial and persistent anxiety burden on both patients and caregivers. In this cohort, a brief systemic–relational psychotherapy program, offered quarterly, did not significantly modify anxiety levels over 12 months. These findings highlight the need for more intensive, sustained, and possibly earlier psychological interventions tailored to the dyadic experience of living with CIF and HPN.

1. Introduction

Living with a chronic illness such as chronic intestinal failure (CIF) is a persistent source of emotional and functional disruption for both patients and their caregivers [1]. CIF often develops unexpectedly, as a consequence of ischemic bowel disease, Crohn’s disease, or surgical complications, and requires long-term dependence on home parenteral nutrition (HPN). This condition profoundly alters autonomy, daily routines, and social roles [1,2,3], imposing not only physiological but also substantial psychological burdens. Patients must adjust to a loss of independence and a highly medicalized lifestyle, while caregivers are often thrust into complex roles that combine emotional support with demanding practical tasks—frequently at the expense of their own well-being [4,5,6,7].
The patient’s role undergoes profound changes both socially (e.g., inability to work) and within the family structure [8]. Patients frequently experience fatigue, reduced work capacity, and the constant demands of HPN therapy, which include adhering to dietary and fluid restrictions, monitoring intestinal function, and, in some cases, managing a stoma [9,10]. Dependence on HPN affects autonomy, employability, mobility, and social life, and significantly disrupts sleep when therapy is administered during nighttime hours [11,12,13,14].
Most studies in this field have focused primarily on patients, with limited attention to caregivers, whose daily routines are deeply reshaped by the need to provide ongoing support [15,16,17,18]. While the biomedical impact of CIF and HPN is well documented [7], the psychological dimension—particularly the evolution of anxiety over time and the dyadic nature of patient–caregiver burden—remains underexplored.
Recent research highlights the importance of mutual emotional regulation in long-term illness caregiving relationships and underscores the need for interventions that target both members of the dyad [19,20,21,22,23,24]. From a psychoneuroimmunological and psychosomatic perspective, chronic stress and unresolved anxiety may contribute to systemic dysregulation and reduced quality of life [25]. Evidence supports the value of dyadic psychological interventions in chronic disease management. Meta-analyses indicate that systemic or couple-based therapies can improve anxiety, communication, and emotional resilience in families coping with long-term illness. Specifically, moderate to strong effects of family-based interventions in reducing psychological distress were reported, when caregiving becomes a central component of the patient’s life [18,21,22].
In the context of HPN, where therapy is administered daily and often during the night, caregivers are not only practical assistants but also emotional co-sufferers. Systemic–relational approaches enable both patient and caregiver to explore how the illness affects their relationship and self-perception, fostering shared adaptation rather than isolated coping. Although such interventions require more time than individual therapies, their focus on the relational architecture of distress makes them particularly suited for managing chronic conditions such as CIF [26].
While individual cognitive–behavioural therapies have demonstrated efficacy in reducing anxiety in chronic illness [27,28], systemic–relational psychotherapy directly addresses the emotional dynamics within the patient–caregiver relationship. This approach aims to restore functional communication, emotional reciprocity, and relational balance—especially when chronic illness reshapes personal roles and identities [5,29,30].
Despite growing recognition of these dynamics, there is a lack of longitudinal research evaluating anxiety trajectories in both patients and caregivers with CIF, and the potential impact of dyadic psychological interventions. This study addresses that gap by assessing the progression of anxiety symptoms over a 12-month period using the Hamilton Anxiety Rating Scale (HAM-A) in CIF patient–caregiver pairs who either participated in a systemic–relational psychotherapy program or declined participation. Primary outcomes include changes in overall anxiety scores over time; secondary analyses explore specific symptom domains (e.g., tension, fear, somatization) and potential differences between patients and caregivers.
This work builds on our previous publication, which reported baseline anxiety levels in the same cohort [29,30,31]. The present study extends those findings with two follow-up assessments at 6 and 12 months, providing a longitudinal view of the psychological burden in this population.
Understanding the psychological impact of CIF on both patients and caregivers—and evaluating the potential benefits of systemic–relational psychotherapy—is particularly relevant in Italy, where family members are the primary providers of caregiving. Although the national healthcare system offers universal coverage, psychological support for patients with rare chronic conditions and their caregivers is limited. Moreover, specialized HPN centres are often located far from patients’ homes, exacerbating isolation and perceived burden. These insights may guide the development of holistic care pathways, inform healthcare policies, and contribute to tailored psychosocial interventions aimed at improving quality of life and long-term adaptation in rare chronic conditions.

2. Methods

2.1. Study Design

This was a prospective, observational, non-randomized longitudinal study conducted at a single tertiary care centre in Italy. Data were collected at three time points: baseline (T0), 6 months (T1), and 12 months (T2). The study compared CIF patient–caregiver pairs who agreed to participate in a systemic–relational psychotherapy program (Group Y) with those who declined participation (Group N).

2.2. Participants

All consecutive adult patients (aged 18–70 years) diagnosed with chronic intestinal failure (CIF) and receiving home parenteral nutrition (HPN) for at least one month were invited to participate, along with their primary informal caregivers. Written informed consent was obtained from all participants.

2.3. Instruments

Anxiety levels in both patients and caregivers were assessed using the Hamilton Anxiety Rating Scale (HAM-A), a clinician-administered tool widely used in medical–psychological research to evaluate the severity of anxiety symptoms [32,33]. The Italian version of the HAM-A, previously validated and culturally adapted for clinical use, was administered in structured interviews by trained psychologists.
The HAM-A consists of 14 items covering both somatic and psychological domains, each rated on a 5-point Likert scale (0–4) according to symptom intensity perceived by the participant: 0 = absent, 1 = mild, 2 = moderate, 3 = severe, 4 = very severe. Total scores range from 0 to 56.
The 14 items are as follows:
  • Anxious mood (worries, fear of the worst, irritability);
  • Tension (startle response, fatigability, restlessness, easy tearfulness, trembling, inability to relax);
  • Fears (of the dark, traffic, crowds, being alone);
  • Insomnia (difficulty falling asleep, interrupted or unrefreshing sleep, nightmares, night terrors);
  • Cognitive functioning (poor memory, difficulty concentrating);
  • Depressed mood (loss of interest, anhedonia, feelings of depression, mood lability);
  • Somatic muscular symptoms (aches, stiffness, bruxism, twitching, myoclonus, unsteady voice, increased tone);
  • Sensory symptoms (tinnitus, blurred vision, hot/cold flushes, weakness, paraesthesia);
  • Cardiovascular symptoms (tachycardia, palpitations, chest pain, vascular throbbing, presyncope);
  • Respiratory symptoms (chest tightness, choking sensations, sighing, dyspnoea);
  • Gastrointestinal symptoms (IBS-type symptoms, abdominal pain, bloating, dysphagia, nausea, vomiting, altered bowel habits, weight loss);
  • Genitourinary symptoms (urinary frequency/urgency, menstrual disturbances, sexual dysfunction);
  • Autonomic symptoms (dry mouth, headaches, flushing, sweating, dizziness, goosebumps);
  • Observed behaviour (fidgeting, restlessness, hand tremors, strained facial expressions, sighing, pallor).
Internal consistency for the Italian HAM-A has been reported as Cronbach’s α = 0.88 in clinical samples, indicating good reliability [34]. In our sample, baseline Cronbach’s α was 0.86.
Clinical cut-offs were applied as follows:
0–17: no or mild anxiety;
18–25: moderate anxiety;
≥26: severe anxiety.

2.4. Intervention and Data Collection

Following the baseline interview and initial psychological consultation, participants were invited to join a free systemic–relational psychotherapy program. The intervention consisted of bi-weekly 60 min sessions over 12 months, with both patient and caregiver attending each session. The therapeutic work focused on dyadic interaction patterns, emotional expression, and role clarification; mindfulness-based techniques were selectively integrated to support emotional regulation. All sessions were conducted by the same experienced clinical psychologist to ensure consistency.
Participants who agreed to attend the program were assigned to Group Y; those who declined formed Group N. Reasons for non-participation (e.g., logistical barriers, scepticism toward psychotherapy) were recorded qualitatively but not formally analysed.
Demographic, clinical, and social variables were obtained through structured interviews and medical records, including: age, sex, education (primary school, secondary school, high school, university degree), kinship relationship (spouse, child, parent, sibling), employment status (employed, unemployed, housewife, retired), disease duration, primary diagnosis, stoma status, and residual bowel anatomy.

2.5. Ethical Considerations

The study was conducted in accordance with the Declaration of Helsinki and received approval from the Ethics Committee of A.O.U. Federico II—AORN Cardarelli (approval date: 24 October 2018; protocol no. 317/18).

2.6. Statistical Analysis

All data were entered into a dedicated database and analysed using IBM SPSS Statistics version 28. Descriptive statistics are presented as means ± standard deviation (SD) for continuous variables and as frequencies and percentages for categorical variables.
The normality of data distribution was assessed using the Shapiro–Wilk test, and homogeneity of variances was verified with Levene’s test. For comparisons between groups, Student’s t-test was used for continuous variables with normal distribution; the Mann–Whitney U test was applied for non-parametric data; categorical variables were compared using the Chi-square test or Fisher’s exact test, as appropriate. A p-value < 0.05 was considered statistically significant. Where relevant, 95% confidence intervals and effect sizes (Cohen’s d) were calculated to assess clinical relevance.

3. Results

3.1. Patient–Caregiver Comparisons

A total of 50 patients (28 females, 22 males) and their respective 50 caregivers (34 females, 16 males), all aged between 18 and 70 years, were enrolled. Only 10 patient–caregiver pairs agreed to participate in the psychotherapy program (Group Y), while the remaining 40 pairs declined (Group N). Comparisons between groups were performed at baseline, 6 months, and 12 months.
The demographic and clinical characteristics of patients and caregivers, stratified by participation in the psychotherapy program, are reported in Table 1a (patients) and Table 1b (caregivers). No significant differences were found between Groups Y and N in patients with respect to type or duration of disease or other baseline characteristics.

3.2. Patient–Caregiver Comparisons (Overall Sample)

Regardless of psychotherapy participation, caregivers showed: higher baseline fear scores compared to patients (t (98) = −3.502; p < 0.001; 95% CI: –1.473 to –0.407; d = −0.700); higher anxiety (t (98) = −2.182; p = 0.032; 95% CI: −1.031 to –0.49; d = −0.436); and tension (t (98) = −2.031; p = 0.045; 95% CI: –0.909 to –0.011; d = −0.406) at 6 months; higher observed behaviour alterations during the interview both at 6 months (t (98) = −2.685; p = 0.009; 95% CI: –1.113 to –0.167; d = −0.537) and at 12 months (t (98) = −2.252; p = 0.027; 95% CI: –0.980 to –0.062; d = −0.460).
Conversely, patients exhibited: higher somatic muscular symptoms at baseline (t (98) = 2.385; p = 0.019; 95% CI: 0.111 to 1.209; d = 0.477) and at 6 months (t (98) = 2.045; p = 0.044; 95% CI: 0.016 to 1.064; d = 0.409); higher gastrointestinal symptoms at baseline (t (98) = 3.209; p = 0.002; 95% CI: 0.313 to 1.327; d = 0.642), 6 months (t (98) = 2.172; p = 0.032; 95% CI: 0.048 to 1.072; d = 0.434), and 12 months (t (98) = 2.462; p < 0.001; 95% CI: 0.372 to 1.337; d = 0.718); higher genitourinary symptoms at baseline (t (98) = 2.462; p = 0.016; 95% CI: 0.097 to 0.903; d = 0.492) and 12 months (t (98) = 2.220; p = 0.029; 95% CI: 0.044 to 0.789; d = 0.919).

3.3. Between-Group Comparisons (Group Y vs. Group N)

At baseline, total HAM-A scores were significantly higher in Group Y patients compared to Group N patients (Group Y: 26.9 ± 10.7 vs. Group N: 19.5 ± 10.3; t (48) = 2.025, p = 0.048; 95% CI: 0.053 to 14.847; d = 0.716). No significant differences were found at 6 months or at 12 months. In caregivers, baseline HAM-A scores were also higher in Group Y than in Group N, although not significantly. Similarly, no significant differences were observed at 6 months or at 12 months.
Analysis of individual HAM-A items revealed:
Anxiety: Baseline anxiety scores were significantly higher in Group Y patients than in Group N (t (48) = 3.183; p = 0.003; 95% CI: 0.451 to 1.999; d = 1.125), with no significant differences in caregivers. Anxiety levels in all four groups remained unchanged at 6 and 12 months.
Tension: Baseline tension was high in caregivers from both Groups Y and N and did not change over time. In patients, tension was significantly higher in Group Y than in Group N (t (48) = 2.011; p = 0.017; 95% CI: 0.000 to 1.800; d = 0.711). In Group Y patients, tension significantly decreased from baseline to 6 months (t (9) = 2.333; p = 0.045; 95% CI: 0.021 to 1.379; d = 0.738), with no further improvement at 12 months.
Depressed mood: Baseline scores were significantly higher in Group Y patients (t (48) = 2.063; p = 0.045; 95% CI: 0.024 to 1.826; d = 0.729) and caregivers (t (48) = 2.298; p = 0.026; 95% CI: 0.119 to 1.781; d = 0.813) compared to their respective Group N counterparts.
Sensory symptoms: Baseline involvement was greater in Group Y caregivers (t (48) = 3.054; p = 0.004; 95% CI: 0.410 to 1.990; d = 1.080) and Group Y patients (t (48) = 2.220; p = 0.031; 95% CI: 0.087 to 1.763; d = 0.785) than in their respective Group N counterparts.
No significant differences were found between groups for fear, insomnia, cognitive function, cardiovascular, respiratory, gastrointestinal, genitourinary, or autonomic symptoms, nor for observed behaviour during the interview, except for the previously noted between-patient/caregiver differences.

4. Discussion

Chronic intestinal failure (CIF) encompasses a heterogeneous group of disorders that differ in residual intestinal length, the presence or absence of a stoma, the average daily volume of parenteral nutrition, and the frequency of its administration. The psychological state of patients with CIF is influenced by illness awareness, the anatomical and clinical changes they experience, their dependence on home parenteral nutrition (HPN), and concerns regarding long-term prognosis [5,10,17]. Likewise, the evolving needs of the patient profoundly affect the daily routines and professional lives of caregivers, who usually assume this role not by choice but as a result of emotional and family bonds.

4.1. Summary of Main Findings

This study confirmed high baseline anxiety levels—measured by the total HAM-A score—in both patients and caregivers, with a tendency toward higher scores in the couples who opted for psychotherapy (Group Y). This may reflect either a more distressing initial experience of the condition or a greater emotional awareness and readiness to acknowledge psychological difficulties in Group Y. Notably, only 10 of 50 patient–caregiver pairs agreed to participate in the program. The most frequently reported reasons for declining were scepticism about psychotherapy, logistical difficulties, and lack of time.
The first six HAM-A items—covering anxiety, tension, fear, and depressed mood—were markedly impaired in both patients and caregivers, confirming that CIF and HPN represent destabilizing, chronic challenges to daily life. Although not statistically significant, caregivers consistently exhibited higher anxiety levels than patients, suggesting a greater emotional burden. Over time, patients in Group Y showed a small but significant reduction in tension from baseline to 6 months, though this improvement was not sustained at 12 months.

4.2. Emotional vs. Somatic Symptom Profiles

Somatic HAM-A items—muscular, cardiovascular, respiratory, gastrointestinal, genitourinary, autonomic symptoms, and observed behaviour—can be interpreted as the somatization of psychological distress. In our cohort, these symptoms were generally less pronounced than emotional ones, particularly in caregivers. Exceptions included higher muscular, gastrointestinal, and genitourinary scores in patients, likely reflecting direct consequences of CIF (e.g., abdominal pain, increased bowel sounds, nocturnal diuresis due to HPN). Cardiovascular and respiratory symptoms were mostly absent or mild across groups and time points. Sensory symptoms (e.g., tinnitus, hot flashes, chills) were significantly more frequent in Group Y caregivers and patients than in their respective Group N counterparts.
Overall, the pattern suggests that caregivers were more affected by psychological distress, whereas patients reported more somatic manifestations—possibly reflecting different coping mechanisms and sources of stress.

4.3. Theoretical Rationale for the Psychotherapeutic Model

The choice of systemic–relational psychotherapy was informed by both theoretical and clinical considerations. CIF and HPN disrupt identity, autonomy, and lifestyle for patients, while caregivers face a demanding, often unexpected support role. This creates a dyadic burden—a shared emotional load shaped by interactional dynamics [5,10,17,19].
Unlike individual-focused approaches such as cognitive–behavioural therapy (CBT), systemic–relational psychotherapy conceptualizes symptoms as expressions of relational dysfunction. It targets communication patterns, emotional co-regulation, and role restructuring—especially relevant when illness leads to role reversals (e.g., spouse assuming a parental role, daughter becoming a caregiver to her mother) [20,21,23]. In Mediterranean cultures, these role shifts are particularly pronounced and may foster dependency dynamics that erode the original relationship. The therapeutic process works to re-establish balanced roles, validate both parties’ needs, and encourage shared adaptation rather than unilateral sacrifice [25,35,36,37,38].
This intervention is inherently long-term; meaningful change in relational architecture often requires sustained engagement.

4.4. Interpretation in Light of the Results

Although anxiety scores did not significantly improve overall, the subgroup of patients who chose psychotherapy began with higher anxiety and tension scores, possibly reflecting greater psychological vulnerability but also a higher readiness to seek help. The modest decrease in tension at 6 months among Group Y patients may represent an early sign of relational adjustment, even if not sustained at 12 months. These subtle shifts—difficult to capture in standard symptom scales—are consistent with systemic therapy’s focus on deeper relational restructuring rather than short-term symptom relief.

4.5. Clinical Implications and Future Directions

The findings underscore the need to recognize CIF as a condition affecting both patients and caregivers in an interdependent manner. Given the persistence of emotional distress, future interventions should explore increasing accessibility to psychotherapy through telehealth or home-based formats; offering more intensive or longer-term systemic–relational programs; incorporating psychoeducation and early intervention soon after CIF diagnosis; and integrating caregiver-specific support into multidisciplinary care pathways.
Further longitudinal studies with larger samples are warranted to clarify the trajectories of both emotional and somatic symptoms and to identify predictors of therapeutic engagement and benefit.

5. Study Limitations

This study has several limitations that should be acknowledged.

5.1. Sample Size and Study Design

Due to the rarity of CIF and the variability in its clinical management, this monocentric study included a relatively small number of participants. The limited sample size—particularly in the intervention group—reduced statistical power, increasing the risk of type II errors and limiting the generalizability of results to other settings. Furthermore, the non-randomized design and the self-selection of participants into the psychotherapy program introduce a potential selection bias. Results should therefore be interpreted with caution and considered exploratory in nature.

5.2. Measurement Tools

The HAM-A, while widely used to assess anxiety, is a non-specific instrument that can be applied to various populations and conditions. It is not tailored to the unique characteristics of CIF patients on HPN. The use of a disease-specific or condition-adapted measure could have provided greater sensitivity in detecting relevant psychological changes.

5.3. Unmeasured Confounding Variables

We did not systematically collect data on psychotropic medication use, psychiatric history, or concurrent coping strategies. These factors could have influenced anxiety levels and moderated the effects of the intervention. Future research should incorporate more comprehensive baseline assessments to control for such confounders.

5.4. Limited Existing Literature

The available literature on the quality of life of CIF patients on HPN—and even less so on their caregivers—is scarce. Existing studies often focus on oncological or paediatric populations [23,24,25,26], use heterogeneous methodologies, and target different aspects of burden (emotional, social, or economic). Despite this, our findings are consistent with available evidence and reinforce the need to address the psychosocial dimensions of CIF and HPN [27,28,29].

5.5. Accessibility and Participation Barriers

Only 10 out of 50 patient–caregiver pairs participated in the psychotherapy program. Reported barriers included scepticism toward psychotherapy, logistical difficulties (e.g., distance from the treatment centre), and lack of time. Such obstacles may have prevented the inclusion of individuals who could have benefited from the intervention.

5.6. Duration and Intensity of the Intervention

Systemic–relational psychotherapy is inherently a long-term intervention, often requiring extended engagement to achieve tangible relational changes. The one-year follow-up period of this observational study may not have been sufficient to capture the full therapeutic impact.

6. Conclusions

This study underscores the need for a holistic, dyad-centred approach to the management of chronic intestinal failure (CIF) and home parenteral nutrition (HPN). Emotional distress in this context is not solely an individual experience but a shared, interdependent burden that affects both patients and their caregivers. Interventions that address the needs of both members of the dyad—such as systemic–relational psychotherapy—may foster resilience, improve relational functioning, and support long-term adaptation to the demands of CIF and HPN.
Future research should prioritize randomized controlled trials of dyadic interventions specifically tailored to the CIF–HPN population, with adequate sample sizes and longer follow-up periods. Comparative studies evaluating systemic–relational versus cognitive–behavioural approaches could clarify which therapeutic strategies yield the greatest benefits for emotional well-being, relationship quality, and quality of life in this highly vulnerable group.

Author Contributions

L.S.: data analysis, original draft writing, review and editing, R.O. and L.A.: practical performance; R.O.: data analysis and clinical interpretation; F.P.: study design and critical review; L.S., R.O., L.A. and F.P. contributed to the conception and design of the study, read and approved the final manuscript. All authors have read and agreed to the published version of the manuscript.

Funding

This research received no external funding.

Institutional Review Board Statement

The study was conducted in accordance with the Declaration of Helsinki and received approval from the Ethics Committee of A.O.U. Federico II—AORN Cardarelli (approval date: 24 October 2018; protocol no. 317/18).

Informed Consent Statement

Informed consent was obtained from all subjects involved in the study.

Data Availability Statement

The data presented in this study are available on request from the corresponding author. The data are not publicly available due to privacy restrictions.

Acknowledgments

The authors declare that they received no specific support for this work.

Conflicts of Interest

The authors declare no conflicts of interest.

References

  1. Baxter, J.P.; Fayers, P.M.; McKinlay, A.W. A review of the quality of life of adult patients treated with long-term parenteral nutrition. Clin. Nutr. 2006, 25, 543–553. [Google Scholar] [CrossRef] [PubMed]
  2. Dibb, M.; Soop, M.; Teubner, A.; Shaffer, J.; Abraham, A.; Carlson, G.; Lal, S. Survival and nutritional dependence on home parenteral nutrition: Three decades of experience from a single referral centre. Clin. Nutr. 2017, 36, 570–576. [Google Scholar] [CrossRef]
  3. Burden, S.T.; Jones, D.J.; Gittins, M.; Ablett, J.; Taylor, M.; Mountford, C.; Tyrrell-Price, J.; Donnellan, C.; Leslie, F.; Bowling, T.; et al. Needs-based quality of life in adults dependent on home parenteral nutrition. Clin. Nutr. 2019, 38, 1433–1438. [Google Scholar] [CrossRef] [PubMed]
  4. Wilburn, J.; McKenna, S.P.; Heaney, A.; Rouse, M.; Taylor, M.; Culkin, A.; Gabe, S.; Burden, S.; Lal, S. Development and validation of the Parenteral Nutrition Impact Questionnaire (PNIQ), a patient-centric outcome measure for Home Parenteral Nutrition. Clin. Nutr. 2018, 37, 978–983. [Google Scholar] [CrossRef] [PubMed]
  5. Sowerbutts, A.M.; Panter, C.; Dickie, G.; Bennett, B.; Ablett, J.; Burden, S.; Lal, S. Short bowel syndrome and the impact on patients and their families: A qualitative study. J. Hum. Nutr. Diet. 2020, 33, 767–774. [Google Scholar] [CrossRef]
  6. Carroll, R.E.; Benedetti, E.; Schowalter, J.P.; Buchman, A.L. Management and complications of short bowel syndrome: An updated review. Curr. Gastroenterol. Rep. 2016, 18, 40. [Google Scholar] [CrossRef]
  7. Cuerda, C.; Pironi, L.; Arends, J.; Bozzetti, F.; Gillanders, L.; Jeppesen, P.B.; Joly, F.; Kelly, D.; Lal, S.; Staun, M.; et al. ESPEN practical guideline: Clinical nutrition in chronic intestinal failure. Clin. Nutr. 2021, 40, 5196–5220. [Google Scholar] [CrossRef]
  8. Jeppesen, P.B.; Chen, K.; Murphy, R.; Shahraz, S.; Goodwin, B. Impact on caregivers of adult patients receiving parenteral support for short-bowel syndrome with intestinal failure: A multinational, cross-sectional survey. J. Parenter. Enter. Nutr. 2022, 46, 905–914. [Google Scholar] [CrossRef]
  9. Gulledge, A.D.; Gipson, W.T.; Steiger, E.; Hooley, R.; Srp, F. Home parenteral nutrition for the short bowel syndrome: Psychological issues. Gen. Hosp. Psychiatry 1980, 2, 271–281. [Google Scholar] [CrossRef]
  10. Sowerbutts, A.M.; Jones, D.; Lal, S.; Burden, S. Quality of life in patients and in family members of those receiving home parenteral support with intestinal failure: A systematic review. Clin. Nutr. 2021, 40, 3210–3220. [Google Scholar] [CrossRef]
  11. Winkler, M.F.; Smith, C.E. Clinical, social, and economic impacts of home parenteral nutrition dependence in short bowel syndrome. J. Parenter. Enter. Nutr. 2014, 38 (Suppl. 1), 32S–37S. [Google Scholar] [CrossRef]
  12. Heaney, A.; McKenna, S.P.; Wilburn, J.; Rouse, M.; Taylor, M.; Burden, S.; Lal, S. The impact of home parenteral nutrition on the lives of adults with type 3 intestinal failure. Clin. Nutr. ESPEN 2018, 24, 35–40. [Google Scholar] [CrossRef]
  13. Kumpf, V.J. Challenges and obstacles of long-term home parenteral nutrition. Nutr. Clin. Pract. 2019, 34, 196–203. [Google Scholar] [CrossRef] [PubMed]
  14. Messing, B.; Crenn, P.; Beau, P.; Boutron-Ruault, M.C.; Rambaud, J.-C.; Matuchansky, C. Long-term survival and parenteral nutrition dependence in adult patients with the short bowel syndrome. Gastroenterology 1999, 117, 1043–1050. [Google Scholar] [CrossRef] [PubMed]
  15. Rea, S.A.; Samuel, V.M.; Ferreira, N.; Williams, M.O. Role of psychological flexibility and self-compassion in people on home parenteral nutrition: Psychological, line care adherence and infection outcomes. Mediterr. J. Clin. Psychol. 2023, 11. [Google Scholar] [CrossRef]
  16. Stern, J. Home parenteral nutrition and the psyche: Psychological challenges for patient and family. Proc. Nutr. Soc. 2006, 65, 274–277. [Google Scholar] [CrossRef]
  17. French, C.; Lal, S.; Jones, D.; Sowerbutts, A.M.; Brundrett, D.; Burch, N.; Calvert, C.; Cooper, S.C.; Donnellan, C.; Forbes, A.; et al. Impact of home parenteral nutrition on family members: A national multi-centre cross-sectional study. Clin. Nutr. 2022, 41, 500–507. [Google Scholar] [CrossRef]
  18. Santarpia, L.; Bozzetti, F. Acute impact of home parenteral nutrition in patients with late-stage cancer on family caregivers: Preliminary data. Support. Care Cancer 2018, 26, 667–671. [Google Scholar] [CrossRef]
  19. McGuigan, K.; Laurente, G.; Christie, A.; Carswell, C.; Moran, C.; Yaqoob, M.M.; Bolton, S.; Mullan, R.; Rej, S.; Gilbert, P.; et al. Effectiveness of interventions for informal caregivers of people with end-stage chronic illness: A systematic review. Syst. Rev. 2024, 13, 245. [Google Scholar] [CrossRef]
  20. Scott, A.J.; Correa, A.B.; Bisby, M.A.; Dear, B.F. Depression and anxiety trajectories in chronic disease: A systematic review and meta-analysis. Psychother. Psychosom. 2023, 92, 227–242. [Google Scholar] [CrossRef]
  21. White, V.; Linardon, J.; Stone, J.E.; Holmes-Truscott, E.; Olive, L.; Mikocka-Walus, A.; Hendrieckx, C.; Evans, S.; Speight, J. Online psychological interventions to reduce symptoms of depression, anxiety, and general distress in those with chronic health conditions: A systematic review and meta-analysis of randomized controlled trials. Psychol. Med. 2022, 52, 548–573. [Google Scholar] [CrossRef] [PubMed]
  22. Papola, D.; Miguel, C.; Mazzaglia, M.; Franco, P.; Tedeschi, F.; Romero, S.A.; Patel, A.R.; Ostuzzi, G.; Gastaldon, C.; Karyotaki, E.; et al. Psychotherapies for generalized anxiety disorder in adults: A systematic review and network meta-analysis of randomized clinical trials. JAMA Psychiatry 2024, 81, 250–259. [Google Scholar] [CrossRef] [PubMed]
  23. Cheng, X.; Liu, L.; Ni, S.; Li, C.; Zhang, H.; Mao, B.; Zeng, J. Dualistic perspectives on illness coping experiences of individuals with depression and their spouses: A qualitative study. Int. J. Qual. Stud. Health Well-Being 2025, 20, 2503565. [Google Scholar] [CrossRef]
  24. Xiao, Y.; Sun, J.; Liu, M.; Wang, H.; Guan, J. The effectiveness of dyadic interventions for health outcomes of prostate cancer patients and informal caregivers: A systematic review and meta-analysis. BMC Nurs. 2025, 24, 119. [Google Scholar] [CrossRef]
  25. Beurskens-Meijerink, J.; Huisman-de Waal, G.; Wanten, G. Evaluation of quality of life and caregiver burden in home parenteral nutrition patients: A cross-sectional study. Clin. Nutr. ESPEN 2020, 37, 50–57. [Google Scholar] [CrossRef]
  26. Belza, C.; Patterson, C.; Ghent, E.; Avitzur, Y.; Ungar, W.J.; Fehlings, D.; Stremler, R.; Wales, P.W. “Line care governs our entire world”: Understanding the experience of caregivers of children with intestinal failure receiving long-term parenteral nutrition. J. Parenter. Enter. Nutr. 2022, 46, 1602–1613. [Google Scholar] [CrossRef]
  27. Hofmann, S.G.; Asnaani, A.; Vonk, I.J.; Sawyer, A.T.; Fang, A. The efficacy of cognitive behavioral therapy: A review of meta-analyses. Cogn. Ther. Res. 2012, 36, 427–440. [Google Scholar] [CrossRef]
  28. Graham, C.D.; Gouick, J.; Krahé, C.; Gillanders, D. A systematic review of the use of Acceptance and Commitment Therapy (ACT) in chronic disease and long-term conditions. Clin. Psychol. Rev. 2016, 46, 46–58. [Google Scholar] [CrossRef]
  29. Santarpia, L.; Orefice, R.; Alfonsi, L.; Marra, M.; Contaldo, F.; Pasanisi, F. The anxiety burden in patients with chronic intestinal failure on long-term parenteral nutrition and in their caregivers. Nutrients 2024, 16, 1168. [Google Scholar] [CrossRef]
  30. Pinquart, M.; Sörensen, S. Spouses, adult children, and children-in-law as caregivers of older adults: A meta-analytic comparison. Psychol. Aging 2011, 26, 1–14. [Google Scholar] [CrossRef]
  31. Fellia, T.; Sarafis, P.; Bouletis, A.; Tzenetidis, V.; Papathanasiou, I.; Apostolidi, T.P.; Gkena, N.; Nikolentzos, A.; Patsopoulou, A.; Malliarou, M. Correlation of cancer caregiver’s burden, stress, and their quality of life. Adv. Exp. Med. Biol. 2023, 1425, 267–273. [Google Scholar] [CrossRef]
  32. Hamilton, M. The assessment of anxiety states by rating. Br. J. Med. Psychol. 1959, 32, 50–55. [Google Scholar] [CrossRef]
  33. Thompson, E. Hamilton Rating Scale for Anxiety (HAM-A). Occup. Med. 2015, 65, 601. [Google Scholar] [CrossRef] [PubMed]
  34. Donzuso, G.; Cerasa, A.; Gioia, M.C.; Caracciolo, M.; Quattrone, A. The neuroanatomical correlates of anxiety in a healthy population: Differences between the State-Trait Anxiety Inventory and the Hamilton Anxiety Rating Scale. Brain Behav. 2014, 4, 504–514. [Google Scholar] [CrossRef] [PubMed]
  35. Semonella, M.; Bertuzzi, V.; Dekel, R.; Andersson, G.; Pietrabissa, G.; Vilchinsky, N. Applying dyadic digital psychological interventions for reducing caregiver burden in the illness context: A systematic review and a meta-analysis protocol. BMJ Open 2023, 13, e070279. [Google Scholar] [CrossRef] [PubMed]
  36. Stawnychy, M.A.; Teitelman, A.M.; Riegel, B. Caregiver autonomy support: A systematic review of interventions for adults with chronic illness and their caregivers with narrative synthesis. J. Adv. Nurs. 2021, 77, 1667–1682. [Google Scholar] [CrossRef]
  37. Folwarski, M.; Maciejewska-Cebulak, M.; Skonieczna-Żydecka, K.; Sumlet, M.; Kupiec, M.; Jankowska, B.; Kwella, B.; Balul, G.; Szafrański, W.; Kłęk, S. Quality of life of caregivers of patients on home enteral nutrition. Clin. Nutr. 2024, 43, 1983–1990. [Google Scholar] [CrossRef]
  38. Peters, M.; Rand, S.; Fitzpatrick, R. Enhancing primary care support for informal carers: A scoping study with professional stakeholders. Health Soc. Care Community 2020, 28, 642–650. [Google Scholar] [CrossRef]
Table 1. Demographics and baseline characteristics of patients (a) and caregivers (b) by psychotherapy participation.
Table 1. Demographics and baseline characteristics of patients (a) and caregivers (b) by psychotherapy participation.
(a)
PATIENTS
Group Y (n.10)Group N (n.40)p
Age (years)41.2 ± 15.5 (21–61)50.2 ± 14.5 (18/69)n.s.
Gender9 F/1 M19 F/21 M -
Disease duration (yrs)7.1 ± 6.26.4 ± 5.3n.s.
Primary disease3 intestinal infarction
4 Crohn’s disease
1 intestinal volvulus
1 intestinal pseudobstruction
1 bariatric surgery
14 intestinal infarction
13 Crohn’s disease
4 intestinal volvulus
3 intestinal adhesions
1 intestinal pseudobstruction
1 bariatric surgery
2 mucosal disease
2 radiation enteritis
Residual small bowel length, cm median (range)108 (15–300)
1 pts no resection
25–300
6 pts no resection
Presence of stoma (yes/no)3/109/40
Colon in continuity
(% Cummings)
Median (range)
70 (0–100) 70 (0–100)
Days of infusion/week5 (3–7)5 (3–7)
Education level2 secondary school/7 high school license/1 university degree5 primary/15 secondary school/16 high school license/4 university degree
Employment 1 housewife/4 employed/1 retired, 4 unemployed15 housewives/15 employed/4 retired/6 unemployed
Total HAM-A scoreGroup Y (10)Group N (40)Statistic testp-valueEffect size
basal 26.9 ± 10.7 19.5 ± 10.3t (48) = 2.0250.048d = 0.716
6 months 24.3 ± 8.1 18.4 ± 12.4t (48) = 1.436n.s.d = 0.508
12 months 24.0 ± 10.5 20.4 ± 12.2t (48) = 0.863n.s.d = 0.307
(b)
CAREGIVERS
Group Y (n.10)Group N (n.40)p
Age (years)53.6 ± 14.5 (29–71)50.0 ± 13.0 (21–70)n.s.
Gender6 F/4 M28 F/12 M-
Education level4 secondary school/6 high school license3 primary/14 secondary school/17 high school license/6 university degree
Degree of kinship5 husband/wife
4 mothers
1 sister
25 husband/wife
6 son/daughter
7 mother/father
2 brother/sister
Employement5 housewives
1 retired
4 without work
3 payed work
15 housewives
3 retired
2 without work
20 payed work
Total HAM-A scoreGroup Y (10)Group N (40)Statistic testp-valueEffect size
basal 25.9 ± 12.120.5 ± 10.4t (48) = 1.429n.s.d = 0.505
6 months 22.8 ± 8.120.6 ± 10.3t (48) = 0.614n.s.d = 0.217
12 months 21.6 ± 5.0 21.6 ± 11.4t (48) = 0.034n.s.d = −0.001
Disclaimer/Publisher’s Note: The statements, opinions and data contained in all publications are solely those of the individual author(s) and contributor(s) and not of MDPI and/or the editor(s). MDPI and/or the editor(s) disclaim responsibility for any injury to people or property resulting from any ideas, methods, instructions or products referred to in the content.

Share and Cite

MDPI and ACS Style

Santarpia, L.; Orefice, R.; Alfonsi, L.; Pasanisi, F. Tracking Anxiety in Chronic Intestinal Failure: The Role of Time in Healing. Healthcare 2025, 13, 2503. https://doi.org/10.3390/healthcare13192503

AMA Style

Santarpia L, Orefice R, Alfonsi L, Pasanisi F. Tracking Anxiety in Chronic Intestinal Failure: The Role of Time in Healing. Healthcare. 2025; 13(19):2503. https://doi.org/10.3390/healthcare13192503

Chicago/Turabian Style

Santarpia, Lidia, Raffaella Orefice, Lucia Alfonsi, and Fabrizio Pasanisi. 2025. "Tracking Anxiety in Chronic Intestinal Failure: The Role of Time in Healing" Healthcare 13, no. 19: 2503. https://doi.org/10.3390/healthcare13192503

APA Style

Santarpia, L., Orefice, R., Alfonsi, L., & Pasanisi, F. (2025). Tracking Anxiety in Chronic Intestinal Failure: The Role of Time in Healing. Healthcare, 13(19), 2503. https://doi.org/10.3390/healthcare13192503

Note that from the first issue of 2016, this journal uses article numbers instead of page numbers. See further details here.

Article Metrics

Back to TopTop