Needs-based quality of life in adults dependent on home parenteral nutrition

Burden, S.; Jones, D.J.; Gittins, Matthew; Ablett, Joanne; Taylor, Michael; Mountford, C; Tyrrell-Price, Jonathan; Donnellan, Clare; Leslie, Fiona; Bowling, Tim; Gabe, Simon; Rahman, Farooq; McKenna, SP; Wilburn, Jeanette; Heaney, Alice; Allan, Phil; Lal, Simon

doi:10.1016/j.clnu.2018.06.1362

Cited by 12 publications

(59 citation statements)

References 0 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Patients’ desire for greater freedom and normalcy was further reinforced when discussing a perfect or ideal treatment with a reduction in hours or nights on PN being the most commonly reported theme. This aligns with other research demonstrating that health‐related quality of life is related to the number of nights patients receive PN ( 6 ) .…”

Section: Discussionsupporting

confidence: 91%

“…Much of the available literature tends to be quantitative in nature using generic quality of life patient‐reported outcomes, which lack content validity for specific disease populations ( 5 ) , or using quality of life instruments focused on PN rather than on SBS‐IF ( 6,7 ) . This research indicates that patients on PN have a reduced health‐related quality of life compared to matched controls ( 5 ) , with psychological symptoms, as well as sexual and social dysfunction ( 8–10 ) , and describe an inability to act spontaneously because daily life involves considerable planning around infusions ( 11 ) .…”

Section: Introductionmentioning

confidence: 99%

See 1 more Smart Citation

Short bowel syndrome and the impact on patients and their families: a qualitative study

Sowerbutts

Panter

Dickie

et al. 2020

J Human Nutrition Diet

Self Cite

View full text Add to dashboard Cite

Background Short bowel syndrome (SBS) is a malabsorptive condition that can result in intestinal failure (SBS‐IF). Many patients with SBS‐IF require home parenteral nutrition (PN) for survival. However, PN has profound effects on patients and their family members. The present study aimed to understand the lived experience of SBS‐IF for patients and their families. Methods In‐depth semi‐structured qualitative interviews were conducted with 15 patients with SBS‐IF and five adult family members living with someone with SBS‐IF. A patient‐centric approach was taken, with a patient steering group providing input and guidance to develop the interview guide. Key concepts were identified using thematic analysis of interview transcripts. Results Patients’ lives were dominated by having SBS‐IF. They described physical impacts that included patient‐reported signs and symptoms and physical restrictions comprising of restrictions on daily life, actives of daily living and physical functioning. In addition, they encountered emotional impacts with a plethora of negative feelings and social impacts, such as difficulties socialising and maintaining relationships. Patients coped by adapting their life around SBS‐IF, having support and adopting an attitude of gratitude and acceptance. Family members were also affected and, along with patients, appreciated the respite of a night off from infusions. Conclusions Patients and families face many difficulties with SBS‐IF. Healthcare professionals can support patients by facilitating them explore what others have found beneficial; adapting their life around PN, viewing PN with acceptance and trying to cultivate gratitude. Further research into the support required for families may be beneficial.

show abstract

Section: Discussionsupporting

confidence: 91%

Section: Introductionmentioning

confidence: 99%

Short bowel syndrome and the impact on patients and their families: a qualitative study

Sowerbutts

Panter

Dickie

et al. 2020

J Human Nutrition Diet

Self Cite

View full text Add to dashboard Cite

show abstract

“…Two patients who reflected on stopping did not seriously consider it as an option at that point. Most immediately dismissed the idea, which is consistent with other studies, which have demonstrated that patients with advanced cancer do not find HPN more burdensome than those with benign disease [31].…”

Section: Discussionsupporting

confidence: 71%

Palliative home parenteral nutrition in patients with ovarian cancer and malignant bowel obstruction: experiences of women and family caregivers.

Sowerbutts

Lal

Sremanak

et al. 2019

Preprint

View full text Add to dashboard Cite

Background Malnutrition is a problem is advanced cancer, particularly ovarian cancer where malignant bowel obstruction (MBO) is a frequent complication. Parenteral nutrition is the only way these patients can received adequate nutrition and is a principal indication for palliative home parenteral nutrition (HPN). Giving HPN is contentious as it may increase the burden on patients. This study investigates patients’ and family caregivers’ experiences of HPN, alongside nutritional status and survival in patients with ovarian cancer and MBO. Methods This mixed methods study collected data on participant characteristics, clinical details and body composition using computed tomography combined with longitudinal in-depth interviews underpinned by phenomenological principles. The cohort comprised 38 women with ovarian cancer and inoperable MBO admitted (10/2016 to 12/ 2017) to a tertiary referral hospital. Longitudinal interviews (n=57) were carried out with 20 women considered for HPN and 15 of their family caregivers. Results Of the 38 women, 32 received parenteral nutrition (PN) in hospital and 17 were discharged on HPN. Nutritional status was poor with 31 of 33 women who had a CT scan having low muscle mass, although 10 were obese. Median overall survival from admission with MBO for all 38 women was 70 days (range 8 - 506) and for those 17 on HPN was 156 days (range 46 – 506). Women experienced HPN as one facet of their illness, but viewed it as a “lifeline” that allowed them to live outside hospital Nevertheless, HPN treatment came with losses including erosion of normality through an impact on activities of daily living and dealing with the bureaucracy surrounding the process. Family caregivers coped but were often left in an emotionally vulnerable state. Conclusions: Women and family caregivers reported that the inconvenience and disruption caused by HPN was worth the extended time they had at home.

show abstract

“…We have previously reported a rate of 0.21 per 1000 catheter days for all patients discharged from our service subsequent to 2011 (21) , whereas other studies have reported rates as high as 11.5 per 1000 catheter days (22)(23)(24)(25)(26)(27)(28)(29)(30)(31) . Studies demonstrating the improvement in quality of life with the use of palliative HPN report that reduced readmission rates are of particular importance, such that avoidance of HPN-related complications, including catheter infections, remains a very pertinent issue (5)(6)(7)10,11,32) . Thus, the CRBSI rate of 0.169 per 1000 catheter days reported in the present study is key to avoiding admissions and maintaining quality of life, at the same time as emphasising the importance of meticulous catheter care protocols.…”

Section: Figurementioning

confidence: 99%

A novel discharge pathway for patients with advanced cancer requiring home parenteral nutrition

Bond

Teubner

Taylor

et al. 2019

J Human Nutrition Diet

Self Cite

View full text Add to dashboard Cite

Background The use of home parenteral nutrition (HPN) for palliative indications is increasing internationally and is the leading indication in some countries. Discharge on HPN can be complex in metabolically unstable patients and requires intestinal failure expertise. Methods Between 2012 and 2018, we performed a retrospective analysis aiming to assess the impact of a novel remote discharge pathway for palliative HPN patients. This was evaluated using a quality improvement approach. Results One hundred and twenty‐five patients with active malignancy [mean (range) age 58 (25–80) years] were referred to the intestinal failure unit (IFU) for remote discharge. Of 82 patients were discharged from the oncology Centre on HPN using the pathway. The remaining 43 patients either declined HPN or the Oncology team felt that the patient became too unwell for HPN or died prior to discharge. There was an increase in patients referred for remote discharge from 13 in 2012 to 43 in 2017. The mean number of days between receipt of referral by the IFU to discharge on HPN from the oncology centre reduced from 29.4 days to 10.1 days. Following remote discharge, the mean number of days on HPN was 215.9 days. Catheter‐related blood stream infection rates in this cohort were very low at 0.169 per 1000 catheter days. Conclusions This is the first study to demonstrate the remote safe, effective and rapid discharge of patients requiring palliative HPN between two hospital sites. This allows patients with a short prognosis more time in their desired location.

show abstract

Needs-based quality of life in adults dependent on home parenteral nutrition

Cited by 12 publications

References 0 publications

Short bowel syndrome and the impact on patients and their families: a qualitative study

Short bowel syndrome and the impact on patients and their families: a qualitative study

Palliative home parenteral nutrition in patients with ovarian cancer and malignant bowel obstruction: experiences of women and family caregivers.

A novel discharge pathway for patients with advanced cancer requiring home parenteral nutrition

Contact Info

Product

Resources

About