The impact of percutaneous endoscopic gastrostomy feeding on quality of life

Brotherton, Ailsa M (2005) The impact of percutaneous endoscopic gastrostomy feeding on quality of life. Doctoral thesis, University of Central Lancashire.

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The provision of enteral feeding continues to increase with approximately 20,000 people in the United Kingdom feeding at home. Health care professionals have an ethical duty to recognise and treat malnutrition, though in clinical practice they are often faced with difficult decisions to ensure that the benefits of tube feeding are greater than the burdens; that the provision of a tube feed is in the patient's best interests.
The aim of this study was to evaluate how the provision of enteral nutrition via a Percutaneous Endoscopic Gastrostomy (PEG) impacts on the Quality of Life (QoL) of patients from the patients' and carers' perspectives.
Initially, QoL was measured using the SF36 Health questionnaire. A longitudinal, prospective pilot study was undertaken including clinical and QoL assessments prior to PEG placement, and at one week, one month, three months and six months following PEG insertion. The results of the pilot study of 22 patients clearly demonstrated that the SF-36 was not an
appropriate tool for measuring QoL in this patient group. A semi-structured interview approach was developed to determine the concerns relating to PEG feeding and how feeding impacted on QoL. Health care professionals' views were also sought using a postal questionnaire and the results compared to those of patients and carers. These data informed the development of a preliminary QoL assessment tool which involved item generation, item reduction, response scale generation and pre-testing for acceptability and feasibility. Sixteen adult patients, 27 carers of adults and 24 carers of children were interviewed. In general, patients living in their own home viewed their QoL as acceptable. However, the
carers of adult patients were less positive about the patients QoL. In contrast, the carers of children frequently reported their child's QoL to be acceptable.
The reported impact of feeding on daily and social lives ranged from the PEG feeding being totally disruptive to the PEG having no impact at all. Delayed and disturbed sleep, restricted ability to go out, difficulties finding a place outside the home to feed, childcare problems, the negative attitudes of others towards feeding and family divisions emerged as key issues and
concerns. A wide range of feelings towards the PEG feeding including feelings of anger, gratitude, relief and fear were expressed. Healthcare professionals, carers and patients disagreed on key issues of patient and carer involvement in the decision making process, the quantity of information provided prior to PEG placement, appropriateness of patient selection
for the procedure and acceptability of QoL.
The delivery of patient centred care must be based on appropriate patient selection, decisionmaking, setting of treatment goals for PEG feeding and the evaluation of the impact of treatment. Current generic QoL measures are highly likely to be inappropriate to measure the impact of feeding upon QoL and a validated PEG specific QoL tool is required to measure
the impact of PEG feeding upon QoL. A research proposal has been developed to fully validate the tool for use in clinical practice.
The impact of PEG feeding on QoL was variable. Although it is recognised that the results are not generalisable to wider populations, the results support increased patient and carer involvement in the decision-making process, more appropriate information, timely explanations of the procedure and flexible care in the community to meet patients' needs.

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