Tracking Anxiety in Chronic Intestinal Failure: The Role of Time in Healing
Abstract
1. Introduction
2. Methods
2.1. Study Design
2.2. Participants
2.3. Instruments
- 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).
2.4. Intervention and Data Collection
2.5. Ethical Considerations
2.6. Statistical Analysis
3. Results
3.1. Patient–Caregiver Comparisons
3.2. Patient–Caregiver Comparisons (Overall Sample)
3.3. Between-Group Comparisons (Group Y vs. Group N)
4. Discussion
4.1. Summary of Main Findings
4.2. Emotional vs. Somatic Symptom Profiles
4.3. Theoretical Rationale for the Psychotherapeutic Model
4.4. Interpretation in Light of the Results
4.5. Clinical Implications and Future Directions
5. Study Limitations
5.1. Sample Size and Study Design
5.2. Measurement Tools
5.3. Unmeasured Confounding Variables
5.4. Limited Existing Literature
5.5. Accessibility and Participation Barriers
5.6. Duration and Intensity of the Intervention
6. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
References
- 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]
- 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]
- 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]
- 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]
- 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]
- 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]
- 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]
- 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]
- 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]
- 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]
- 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]
- 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]
- Kumpf, V.J. Challenges and obstacles of long-term home parenteral nutrition. Nutr. Clin. Pract. 2019, 34, 196–203. [Google Scholar] [CrossRef] [PubMed]
- 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]
- 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]
- Stern, J. Home parenteral nutrition and the psyche: Psychological challenges for patient and family. Proc. Nutr. Soc. 2006, 65, 274–277. [Google Scholar] [CrossRef]
- 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]
- 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]
- 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]
- 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]
- 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]
- 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]
- 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]
- 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]
- 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]
- 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]
- 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]
- 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]
- 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]
- 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]
- 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]
- Hamilton, M. The assessment of anxiety states by rating. Br. J. Med. Psychol. 1959, 32, 50–55. [Google Scholar] [CrossRef]
- Thompson, E. Hamilton Rating Scale for Anxiety (HAM-A). Occup. Med. 2015, 65, 601. [Google Scholar] [CrossRef] [PubMed]
- 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]
- 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]
- 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]
- 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]
- 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]
(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. | ||
Gender | 9 F/1 M | 19 F/21 M | - | ||
Disease duration (yrs) | 7.1 ± 6.2 | 6.4 ± 5.3 | n.s. | ||
Primary disease | 3 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) | 3/10 | 9/40 | |||
Colon in continuity (% Cummings) Median (range) | 70 (0–100) | 70 (0–100) | |||
Days of infusion/week | 5 (3–7) | 5 (3–7) | |||
Education level | 2 secondary school/7 high school license/1 university degree | 5 primary/15 secondary school/16 high school license/4 university degree | |||
Employment | 1 housewife/4 employed/1 retired, 4 unemployed | 15 housewives/15 employed/4 retired/6 unemployed | |||
Total HAM-A score | Group Y (10) | Group N (40) | Statistic test | p-value | Effect size |
basal | 26.9 ± 10.7 | 19.5 ± 10.3 | t (48) = 2.025 | 0.048 | d = 0.716 |
6 months | 24.3 ± 8.1 | 18.4 ± 12.4 | t (48) = 1.436 | n.s. | d = 0.508 |
12 months | 24.0 ± 10.5 | 20.4 ± 12.2 | t (48) = 0.863 | n.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. | ||
Gender | 6 F/4 M | 28 F/12 M | - | ||
Education level | 4 secondary school/6 high school license | 3 primary/14 secondary school/17 high school license/6 university degree | |||
Degree of kinship | 5 husband/wife 4 mothers 1 sister | 25 husband/wife 6 son/daughter 7 mother/father 2 brother/sister | |||
Employement | 5 housewives 1 retired 4 without work 3 payed work | 15 housewives 3 retired 2 without work 20 payed work | |||
Total HAM-A score | Group Y (10) | Group N (40) | Statistic test | p-value | Effect size |
basal | 25.9 ± 12.1 | 20.5 ± 10.4 | t (48) = 1.429 | n.s. | d = 0.505 |
6 months | 22.8 ± 8.1 | 20.6 ± 10.3 | t (48) = 0.614 | n.s. | d = 0.217 |
12 months | 21.6 ± 5.0 | 21.6 ± 11.4 | t (48) = 0.034 | n.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. |
© 2025 by the authors. Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https://creativecommons.org/licenses/by/4.0/).
Share and Cite
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
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 StyleSantarpia, 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 StyleSantarpia, 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