Impact of long-term HPN on daily life in adults

Persoon, Anke; Waal, Getty Huisman–de; Naber, Ton A.; Schoonhoven, Lisette; Tas, T. A. J.; Sauerwein, Hans P.; Achterberg, Theo van

doi:10.1016/j.clnu.2004.12.009

Cited by 63 publications

(79 citation statements)

References 23 publications

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“…Other studies showed similar results, mostly evaluated in surveys: the lack of freedom, being dependent and limitations in social life [40,41] . Moreover, Huisman-de Waal et al [42] showed social and somatic impacts of HPN therapy on daily life, which are comparable with our data (e.g.…”

Section: Discussionsupporting

confidence: 57%

Management of Home Parenteral Nutrition: A Prospective Multicenter Observational Study

et al. 2015

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BACKGROUND: There are no specific Swiss home parenteral nutrition (HPN) data showing patient characteristics, quality of life (QoL) and complications. The goal of this study was to collect representative nationwide data on current adult HPN patients in Switzerland for international comparability and benchmarking. METHODS: This was a multicenter, nationwide, observational study. We conducted interviews for demographics, PN characteristics, QoL and complications. The data were assessed at baseline and after a follow-up of 3 months using a questionnaire. RESULTS: Thirty-three adult patients were included. The most common underlying diseases were cancer, radiation enteritis and state after bariatric surgery, and the most prevalent indication was short bowel syndrome. During the 3-month observation period, significant increase or stabilization of body weight occurred in the patients, physical activity scores improved from 34.0 to 39.4 and mental scores improved from 41.9 to 46.4. HPN dependency and traveling restrictions were of the greatest concern. Diarrhea, xerostomia and/or thirst were frequent complaints. CONCLUSION: Anthropometric parameters and QoL improved during the observational period in this HPN cohort. These Swiss HPN data are prerequisite for evaluation and comparison of HPN recommendations and best clinical practice, status of professional care instructions related to HPN effectiveness, quality of treatment and patient safety.

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Section: Discussionsupporting

confidence: 57%

Management of Home Parenteral Nutrition: A Prospective Multicenter Observational Study

et al. 2015

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“…[9][10][11][12] Several investigators have used qualitative research to further explore the complexity of HPN and to describe the lived experience from the point of view of patients and their family caregivers. [13][14][15][16][17] Through quotations and recurrent themes it is possible to "hear" and "see" what it is like to live with HPN through the patient's voice and own words. A number of important themes ( Table 1 ) have emerged from this body of work, including affirmation of life; lifestyle adaptations; complications and side effects of HPN; being unable to eat or drink; negative emotions; social limitations; dependence; incapability; economic stress; psychological and emotional stress; and limited attention to psychosocial problems during contact with the health care team.…”

Section: Methodsmentioning

confidence: 99%

The Impact of Long-Term Home Parenteral Nutrition on the Patient and the Family

Winkler

Smith

2015

Journal of Infusion Nursing

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Home parenteral nutrition (HPN) is a technologically complex, life-sustaining therapy for individuals who have intestinal failure. Accepting an invasive lifelong therapy like HPN is challenging for patients and their family caregivers. There is a desire to maintain a sense of normalcy in life and to carry on as usual. Using qualitative methodology, the authors explored and described the lived experience of HPN-dependent adults and identified normalization as a repeating and strong theme. Understanding how individuals adapt, cope, or experience this complex therapy provides insight into how they manage their lives in as normal a way as possible. By understanding the perspective of normalization, home infusion nurses and nutrition support clinicians can embrace caregiving strategies and tools consistent with the changing social environment in which the HPN experience is lived.

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“…As stated above, quality of life in the HPN population is considerably reduced compared to the disease-free population (Huisman-de Waal et al 2007; Persoon et al 2005). Patients receiving HPN frequently report exhaustion, “loss of energy and optimism, fear”, apprehension due to the future, and concern about the underlying disease (Huisman-de Waal et al 2007; Winkler and Smith 2014).…”

Section: Introductionmentioning

confidence: 93%

“…For instance, extant literature has shown that HPN patients’ experience not only physical complaints (e.g., diarrhea) but also psychosocial concerns related to their treatment. While majority of the physical concerns can be resolved in the home environment, HPN patients’ psychosocial concerns, specifically depression, are left unaddressed (Baxter et al 2006; Huisman-de Waal et al 2006; Persoon et al 2005). Depression as a psychosocial concern accrues an additional cost (around $80 billion) and reduces quality of life (Howard 2006).…”

Section: Introductionmentioning

confidence: 99%