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

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.

Dealing with loss: food and eating in women with ovarian cancer on parenteral nutrition.

BACKGROUND: Malignant bowel obstruction is a common complication of ovarian cancer, resulting in limited oral intake. Home parenteral nutrition (HPN) may be offered to patients in this condition to meet nutritional requirements. However, it is not known how they experience being unable to eat. The present study reports how patients related to food when receiving HPN. METHODS: The investigation was a qualitative study underpinned by phenomenology with women with advanced ovarian cancer in bowel obstruction receiving parenteral nutrition. Interview transcripts were analysed thematically guided by the techniques of Van Manen. RESULTS: We recruited 20 women to the study. Participants were interviewed a maximum of four times and a total of 39 in-depth longitudinal interviews were conducted. Participants could tolerate minimal amounts of food, if they had a venting gastrostomy. Not being able to eat engendered a sense of sadness and loss, and most women found it challenging to be in the presence of others eating. They adopted strategies to cope, which included fantasising about food and watching cookery programmes. These approaches were not a long-term solution; either participants came to terms with their loss or the strategies became less effective in providing relief. CONCLUSIONS: Home parenteral nutrition meets the nutritional requirements of patients with malignant bowel obstruction but cannot replace the non-nutritive functions of food. Healthcare professionals can offer a patient-centred approach by acknowledging the difficulties that patients may face and, wherever possible, encourage them to focus on the positive benefits of interacting with people rather than the loss of eating on social occasions.

The impact of home enteral feeding on the daily lives of people with head and neck cancer: a metasynthesis of qualitative studies.

BACKGROUND: Home enteral feeding (HEF) may have a wider impact on peoples' daily lives beyond influencing their nutritional and clinical status. This metasynthesis aimed to determine the impact of HEF on peoples' daily lives. METHODS: Qualitative studies were included with adults, who had been diagnosed with head and neck cancer and had finished their cancer treatment, with a feeding tube in place. Medline, PubMed and Cinahl were searched (August 2009 to August 2019). Thematic synthesis was conducted to interpret findings from the included studies. The 'Confidence in the Evidence from Reviews of Qualitative research' (GRADE-CERQual) approach was used to assess the level of confidence associated with each review finding. RESULTS: Seven qualitative studies met the eligibility criteria. Four overarching themes were identified. 'Loss of life as they once knew it' encompassed loss of normality. 'Developing personal coping strategies works towards restoring a sense of normality' encapsulated active adjustment and acceptance of the feeding tube. 'Navigating the hurdles when transitioning back to eating' comprised the trials and tribulations of returning to oral intake. Overall, participants recognised that they could not have managed without the feeding tube and this is encapsulated in 'Feeding tube valued'. CONCLUSIONS: In many cases, initial feelings of change and loss as a result of HEF were replaced with empowerment, adaptation and acceptance following a period of adjustment. Despite the challenges associated with HEF, participants acknowledged its purpose as being functional, as well as reassuring. Future research should explore barriers and facilitators to self-management and patient empowerment amongst those receiving HEF.

The impact of living with home enteral feeding: perspectives of people who have had a diagnosis of head and neck cancer.

BACKGROUND: The number of people with head and neck cancer who are home enterally fed continues to grow each year. Insertion of a feeding tube is common place in these patients and is considered to have a detrimental effect on quality of life. The present study aimed to investigate the daily impact of home enteral feeding (HEF) from the perspective of people who have had a diagnosis of head and neck cancer. METHODS: The methodology aligned with interpretative phenomenology analysis. People who were home enterally fed, with head and neck cancer, and aged ≥18 years were recruited. Data were collected using semi-structured interviews and analysis focused on what the daily impact of HEF meant for participants. RESULTS: Data saturation was achieved after interviewing 15 participants. Five cluster themes were identified. 'Deviation from the norm' encompassed change and loss of normality. 'Regaining control leading to empowerment' encompassed participant empowerment through development of new skills and adjusting the feeding regime. 'Creating a new normal' involved making adjustments to facilitate inclusion and participation. 'External modifiers of the HEF experience' and 'internal modifiers of the HEF experience' encompassed the identification of external and internal HEF factors that influenced HEF adaptation. CONCLUSIONS: HEF was found to influence peoples' daily lives substantially and required extensive adjustments for individuals to find a new normal. A greater level of interpretation was provided beyond the current evidence-base for this group. Policymakers and clinicians should recognise the wider impact of HEF and ensure that this awareness is embedded in clinical practice.

A systematic review of the use of ketogenic diets in adult patients with cancer.

BACKGROUND: A growing body of evidence indicates the importance of nutrition in cancer treatment. Ketogenic diets are one strategy that has been proposed to enhance traditional anticancer therapy. This review summarises the evidence concerning the effect of oral ketogenic diets on anthropometry, metabolism, quality of life (QoL) and tumour effects, at the same time as documenting adverse events and adherence in patients with cancer. METHODS: We searched electronic databases using medical subject headings (MeSH) and text words related to ketogenic diets and cancer. Adult patients following a ketogenic diet as a complementary therapy prior, alongside or after standard anticancer treatment for more than 7 days were included. Studies were assessed for quality using the Critical Appraisal Skills Programme tools (https://www.casp-uk.net). RESULTS: Eleven studies were included with 102 participants (age range 34-87 years) from early-phase trials, cohort studies and case reports. Studies included participants with brain, rectal or mixed cancer sites at an early or advanced disease stage. The duration of intervention ranged from 2.4 to 134.7 weeks (0.5-31 months). Evidence was inconclusive for nutritional status and adverse events. Mixed results were observed for blood parameters, tumour effects and QoL. Adherence to diet was low (50 out of 102; 49%) and ranged from 23.5% to 100%. CONCLUSIONS: High-quality evidence on the effect of ketogenic diets on anthropometry, metabolism, QoL and tumour effects is currently lacking in oncology patients. Heterogeneity between studies and low adherence to diet affects the current evidence. There is an obvious gap in the evidence, highlighting the need for controlled trials to fully evaluate the intervention.

Pretreatment health measures and complications after surgical management of elderly women with breast cancer.

BACKGROUND: Elderly patients with breast cancer are less likely to be offered surgery, partly owing to co-morbidities and reduced functional ability. However, there is little consensus on how best to assess surgical risk in this patient group. METHODS: The ability of pretreatment health measures to predict complications was investigated in a prospective cohort study of a consecutive series of women aged at least 70 years undergoing surgery for operable (stage I-IIIa) breast cancer at 22 English breast units between 2010 and 2013. Data on treatment, surgical complications, health measures and tumour characteristics were collected by case-note review and/or patient interview. Outcome measures were all complications and serious complications within 30 days of surgery. RESULTS: The study included 664 women. One or more complications were experienced by 41·0 per cent of the patients, predominantly seroma or primary/minor infections. Complications were serious in 6·5 per cent. More extensive surgery predicted a higher number of complications, but not serious complications. Older age did not predict complications. Several health measures were associated with complications in univariable analysis, and were included in multivariable analyses, adjusting for type/extent of surgery and tumour characteristics. In the final models, pain predicted a higher count of complications (incidence rate ratio 1·01, 95 per cent c.i. 1·00 to 1·01; P = 0·004). Fatigue (odds ratio (OR) 1·02, 95 per cent c.i. 1·01 to 1·03; P = 0·004), low platelet count (OR 4·19, 1·03 to 17·12: P = 0·046) and pulse rate (OR 0·96, 0·93 to 0·99; P = 0·010) predicted serious complications. CONCLUSION: The risk of serious complications from breast surgery is low for older patients. Surgical decisions should be based on patient fitness rather than age. Health measures that predict surgical risk were identified in multivariable models, but the effects were weak, with 95 per cent c.i. close to unity.

Is lack of surgery for older breast cancer patients in the UK explained by patient choice or poor health? A prospective cohort study.

BACKGROUND: Older women have lower breast cancer surgery rates than younger women. UK policy states that differences in cancer treatment by age can only be justified by patient choice or poor health. METHODS: We investigate whether lack of surgery for older patients is explained by patient choice/poor health in a prospective cohort study of 800 women aged ≥70 years diagnosed with operable (stage 1-3a) breast cancer at 22 English breast cancer units in 2010-2013. DATA COLLECTION: interviews and case note review. OUTCOME MEASURE: surgery for operable (stage 1-3a) breast cancer <90 days of diagnosis. Logistic regression adjusts for age, health measures, tumour characteristics, socio-demographics and patient's/surgeon's perceived responsibility for treatment decisions. RESULTS: In the univariable analyses, increasing age predicts not undergoing surgery from the age of 75 years, compared with 70-74-year-olds. Adjusting for health measures and choice, only women aged ≥85 years have reduced odds of surgery (OR 0.18, 95% CI: 0.07-0.44). Each point increase in Activities of Daily Living score (worsening functional status) reduced the odds of surgery by over a fifth (OR 0.23, 95% CI: 0.15-0.35). Patient's role in the treatment decisions made no difference to whether they received surgery or not; those who were active/collaborative were as likely to get surgery as those who were passive, that is, left the decision up to the surgeon. CONCLUSION: Lower surgery rates, among older women with breast cancer, are unlikely to be due to patients actively opting out of having this treatment. However, poorer health explains the difference in surgery between 75-84-year-olds and younger women. Lack of surgery for women aged ≥85 years persists even when health and patient choice are adjusted for.

Bladder cancer: worse survival in women from deprived areas.

In a case-note review of 120 women and 227 men presenting with muscle-invasive bladder tumours in 1998, survival was worse for women in 3 years of follow-up, with the greatest difference, of 19.9%, at 6 months. For more deprived women, 6-month survival was 52.3%, and 32 (37.2%) presented with advanced disease, compared with 73.5%, and three (8.8%) for less deprived women.

Validation of a nutrition screening tool: testing the reliability and validity.

BACKGROUND: The aim of this study was to validate a nutrition screening tool for use in South Manchester University Hospitals Trust. METHOD: A sample of 100 patients was selected from medical, surgical and elderly care wards. To test the reliability of the screening tool, nurses and dietitians completed the screening tool on the same patient. These results were compared for interobserver error to determine whether the screening tool was reproducible with different observers. To ascertain if the screening tool identified malnutrition at ward level, four markers commonly used to assess nutritional status were collected. These included body mass index (BMI), mid upper arm circumference MUAC, percentage weight loss, and energy intake calculated from the patient's first full day in hospital and expressed as a percentage of their estimated average requirements (EAR). RESULTS: There was a 95% level of agreement between nurses and dietitians within +/-3. The screening tool had a sensitivity level of 78% and a specificity of 52% when compared to all patients who had one or more markers indicating malnutrition. This association was found to be statistically significant (P < 0.005). CONCLUSION: The screening tool is reliable when completed by different observers and is valid for wide scale nutritional assessment. The screening tool identifies an acceptable number of patients who are malnourished but overestimates patients at moderate risk.