Screening for psychosocial distress in patients with long-term home parenteral nutrition

Roskott, Anne Margot; Waal, Getty Huisman–de; Wanten, Geert; Jonkers-Schuitema, Cora F.; Serlie, Mireille J.; Baxter, J.; Hoekstra-Weebers, Josette E. H. M.

doi:10.1016/j.clnu.2012.08.023

Cited by 20 publications

(27 citation statements)

References 19 publications

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“…Patients also report body image issues, which reduce QOL 7 , 9 . Identifying clinically relevant psychosocial distress and providing appropriate professional referrals for HPN‐dependent patients are important for improving QOL 16 …”

Section: Psychosocial Burdensmentioning

confidence: 99%

“…Winkler et al's 8 , 9 , 13 , 14 series validated QOL from the patient‐oriented outcomes approach, specifically identifying the distinction between eating for social pleasure and eating for survival, with each having a strong impact on QOL. In addition, other specific instrument measures for SBS and QOL have been designed in Europe and now provide validated mechanisms to establish how new treatments for SBS influence QOL 15 , 16 …”

Section: Introductionmentioning

confidence: 99%

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Clinical, Social, and Economic Impacts of Home Parenteral Nutrition Dependence in Short Bowel Syndrome

Winkler

Smith

2014

J Parenter Enteral Nutr

105

109

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Home parenteral nutrition (HPN) provides nourishment and hydration to patients with short bowel syndrome and intestinal failure and is thus a life-sustaining therapy for these patients. However, measures of quality of life (QOL) are lower among the HPN-dependent population than among patients with other intestinal diseases who do not require HPN. Multiple factors contribute to lower QOL in HPN-dependent patients, including fears surrounding the increased risk of HPN-associated adverse events, such as catheter-related complications, parenteral nutrition−associated liver disease, and metabolic bone disease. In addition, HPN-dependent patients report impaired sleep and daytime fatigue because of pump noises, equipment alarms, and nocturia. Psychosocial burdens on families of HPN-dependent patients include decreased social activities, disrupted family relationships and friendships, and depression. These families also face imposing financial constraints, including decreased employment and large out-of-pocket expenses for insurance premiums and nonreimbursed copayments, medications, and supplies. Furthermore, HPN technology and HPN-related complications and sequelae contribute to the rapid overall increase in the costs of healthcare systems. Additionally, family caregivers provide unpaid healthcare services for patients who require HPN, often to the detriment of their own physical and mental well-being. Nonetheless, patients dependent on HPN and their caregivers often demonstrate considerable resilience and are frequently able to normalize their response to illness and disability. Interventions that may improve QOL among HPN-dependent patients and caregivers include patient education, affiliation with support groups, treatment of concomitant symptoms, and pharmacotherapies that decrease HPN requirements. (JPEN J Parenter Enteral Nutr. 2014;38(suppl 1):32S-37S)

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Section: Psychosocial Burdensmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Clinical, Social, and Economic Impacts of Home Parenteral Nutrition Dependence in Short Bowel Syndrome

Winkler

Smith

2014

J Parenter Enteral Nutr

105

109

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“…These concerns are confounded by recurrent admissions to hospital that are required from HPN‐related complications, as well as patient worry over developing such complications. It is therefore understandable that significant psychological distress symptoms, including anxiety, fear, depression, shame, and grief, are often experienced by patients dependent on HPN …”

Section: Introductionmentioning

confidence: 99%

Poor Social Support and Unemployment Are Associated With Negative Affect in Home Parenteral Nutrition–Dependent Patients With Chronic Intestinal Failure

Ablett

Vasant

Taylor

et al. 2018

J Parenter Enteral Nutr

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Background: Home parenteral nutrition (HPN) provides life‐sustaining treatment for people with chronic intestinal failure (CIF). Poor quality of life is reported in association with the burden of HPN and the underlying condition leading to intestinal failure (IF). However, levels of negative affect (NA), incorporating anxiety and depression, have not been reported in CIF. This study examined the occurrence and risk factors for NA in a large CIF population using the validated Hospital Anxiety & Depression Scale (HADS) and Multidimensional Scale of Perceived Social Support (MSPSS) questionnaires. Methods: A survey pack including HADS and MSPSS were distributed to patients managed by a specialist IF center. Data from these measures were analyzed against factors including underlying disease, length of time receiving HPN, employment status, and demographics. Results: Of 85 patients who completed this study, 56% had clinical levels of anxiety and/or depression. Linear regression analysis confirmed significant correlations between social support and HADS scores, with poorer perceived social support associated with higher levels of NA (−0.26 MSPSS + 33.24; R2 = 0.29; P < .0001). There were also significant associations between unemployment and higher anxiety (P = .004), depression (P = .008), and NA scores (P = .003). By contrast, there were no significant associations between patient age, duration of time receiving parenteral nutrition, pathophysiological mechanisms of CIF, and NA levels. Conclusions: Clinical anxiety and depression are common, affecting more than half of patients with CIF. Patients with poor social networks and those of working age who have ceased employment are particularly vulnerable and should be prioritized for psychological support because of their elevated risk.

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“…A recently developed shorter self‐assessment version highly correlated with the HPN‐QOL but not with patients’ physical symptoms during HPN 15 . QOL assessment should become part of routine clinical management of HPN patients, but no specific time frame or frequency of conducting an evaluation has been suggested 5 , 10 , 12 , 13 . To the authors’ knowledge, there have been no published reports using the HPN‐QOL to facilitate communication between healthcare providers and patients.…”

Section: Introductionmentioning

confidence: 97%

“…Home‐based care, with support from family members and trained healthcare professionals, provides patients the opportunity to receive nutrition support in a familiar and comfortable environment outside of a hospital or institutional setting. However, known factors negatively affect the quality of life (QOL) of HPN patients, including decreased physical, psychological, and social function along with increased occurrences of depression, drug dependency, sleep disturbance, frequent urination, fear of therapy‐related complications, inability to eat, and financial distress 1 – 7 . Furthermore, the emotional and physical complications associated with HPN and underlying disease require extensive lifestyle adaptation for patients and their families 4 , 8 , 9 …”

Section: Introductionmentioning

confidence: 99%

Content Validation of a Home Parenteral Nutrition–Patient‐Reported Outcome Questionnaire

et al. 2017

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Screening for psychosocial distress in patients with long-term home parenteral nutrition

Cited by 20 publications

References 19 publications

Clinical, Social, and Economic Impacts of Home Parenteral Nutrition Dependence in Short Bowel Syndrome

Clinical, Social, and Economic Impacts of Home Parenteral Nutrition Dependence in Short Bowel Syndrome

Poor Social Support and Unemployment Are Associated With Negative Affect in Home Parenteral Nutrition–Dependent Patients With Chronic Intestinal Failure

Content Validation of a Home Parenteral Nutrition–Patient‐Reported Outcome Questionnaire

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