The Impact of Percutaneous Endoscopic Gastrostomy Feeding upon Quality of Life in Adults

1
The Impact of Percutaneous Endoscopic
Gastrostomy Feeding upon Quality of Life in
Adults

• Dr Ailsa Brotherton
• Senior Research Fellow
• (ambrotherton_at_uclan.ac.uk)

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Introduction of the paper

• This paper is part of a larger research project
  which
• Included a pilot study to measure QoL of adult
  patients on a PEG using the SF36
• Developed a semi structured interview approach to
  explore the issues and concerns of living with a
  PEG and the impact upon daily life in 3 subgroups
  (adult patients, carers of adults, carers of
  children)
• Compared the perceptions of health care
  professionals with those of patients and their
  carers
• Developed a preliminary PEG QoL assessment tool

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Background

• Very few studies have been reported that formally
  measure QoL in the PEG population
• Loeser et al, 2003 assessed QoL by proxy
  rating and self-rating
• Karnofsky and Spitzer indices (purely
  functional scales)
• European Organization for Research
  and Treatment of Cancer EORTC QLQ C30
• Concluded QoL is reduced in patients on
  HETF, partly explained by malnutrition.
• 
  
  
• (Schneider et al, 2000Roberge et al,
  2000 Klose et al, 2003)
• The available QoL measures are not specifically
  designed to measure the impact of feeding on QoL
  and do not contain questions to determine this
• No known validated QoL assessment tools that have
  been developed and validated specifically for
  patients with a PEG
• Numerous methodological difficulties in measuring
  disease specific health related QoL
• (Abbott, Webb and Dodd, 1997, Abbott and
  Gee, 2003)

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Aim

• To understand how the provision of enteral
  feeding via a PEG impacts on the daily life and
  QoL of adult patients, from both the patients
  and carers perspectives
• Approval was obtained from the Local Research and
  Ethics Committee and informed consent was sought.

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Methods

• Cross sectional qualitative design
• Purposive sampling
• Semi-structured interview approach developed to
  provide a consistent framework of questions for
  the patients and carers
• Semi-structured interviews
• Format developed based on
• Available literature
  regarding patients/carers views of PEG feeding
• Personal experiences of
  clinical practice
• Discussions with HCPs in
  the field.
• Open and closed questions falling broadly into
  two categories
• Service provision
• Impact of feeding on daily
  life
• Eligibility All adult patients receiving enteral
  feeds via a PEG within an NHS Trust, in the
  Northwest of England.

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Data collection and analysis

• Data Collection
• Subjects 15 adult patients
• 19 carers of adults
• Location subjects choice - primarily own homes,
  some hospital.
• Interviews All taped except in 2 patients who
  could not speak communication aids were used
  and their own words were documented exactly as
  written
• Data analysis
• Interviews transcribed and analysed manually
• Open questions
• Systematic searching for
  relevant phrases
• Extracting and coding of
  phrases
• Sequential stages of
  reduction and ordering
• Identification of emerged
  themes
• Closed Questions Results presented as
  percentages of the responses given.
• Independent analysis of one third of the
  transcripts by second researcher

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Results Difficulties arising from PEG feeding
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Results responses to closed questions

• Do you experience any difficulties administering
  the feed?

Are you happy with the
feeding regimen?
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Results cont.

• In your view, do you (the patient) have an
  acceptable QoL?

• Do you receive sufficient
• support from the HCPs?

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Emerging themes from open questions the impact
of feeding on daily life

• Relief of pressure to eat at mealtimes
• It has taken the pressure off mealtimes I
  was finding it very difficult to eat. I was
  spending hours on each meal and not finishing it
• Disturbed sleep
• It disturbs my sleep so much. When you go
  to bed and this tube is just sticking out of your
  stomach you cannot move
• Restricted ability to go out
• Well, I just dont go out anymore
• Well I have to be here all day everyday
  one carer comes in to sit with him for 2 hours a
• week while I go and do my shopping
• Everything about his regimen restricts my
  life. Hes feeding during the day now and it is
  stopping us from going out. Im quite bitter
  about it because he hasnt got that long to live
• Restricted choice of clothes/leakage of feed on
  clothes
• I cant wear a bikini or cropped tops on my
  holidays like all my friends
• It permanently leaks I have to cover up
  and wrap up though you cant afford to let it
  affect you, lifes too short to be self
  conscious
• Difficulties finding a place to feed
• I gave him the feed on a bench in town once
  and I vowed I would never do that again

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Themes cont

• Missing food / drinks
• I just miss eating and drinking
• I only cook dishes that I know he didnt
  like .I couldnt sit and eat his favourite meal
  while he cannot have even one mouthful
• Social occasions Christmas, birthday parties
• It affects your social life when you go to
  parties. I go but I feel alienated and other
  people feel uncomfortable because they are eating
  and I cannot
• We cant even have a drink together at
  Christmas or even a piece of cake or a cup of
  tea. I dont like drinking in front of him
  because I know he would love a cup of tea
• Negative attitudes of others towards feeding
• If we are in a restaurant people can be
  really put off
• My husband is frightened of the tube hes
  frightened to give me a hug
• Burden placed on other family members
• Fancy getting to seventy six and having to
  get up at six every morning (to let the carers
  in). I would welcome that Shipman here. I would
  if he had two lethal injections, one for him and
  one for me

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Feelings towards PEG feeding

• Depression
• Anger
• Frustration
• Relief
• Fear
• Worry
• Gratitude

• Carers only
• Upsetting
• Queasiness

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Conclusion

• Wide range of patient and carer experiences and
  perspectives
• Cannot generalise about the impact of PEG feeding
  on individual patients and their families
• Increased social support / support for daily life
  required, planned on an individualised basis
• Need to develop objective way to measure the
  impact of PEG feeding on QoL
• Further planned research
• Psychometric validation of the PEG QoL tool for
  the 3 subgroups Adult patients, carers of
  adults, carers of children

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Acknowledgements

• Sincere thanks to
• The patients and carers who participated.
• My supervisory team
• Professor Janice Abbott - Director of
  Studies
• Professor Peter Aggett - Second
  supervisor
• Seedcorn Funding Committee/ NHS Trust

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References

• Loeser,C, von Herz U, KÜchler T, et al. Quality
  of Life and Nutritional State in Patients on Home
  Enteral Tube Feeding. Nutrition.2003. Vol
  19,605-611.
• Klose J, Heldwein W, Rafferzeder M, et al.
  Nutritional Status and Quality of Life in
  patients with Percutaneous Endoscopic Gastrostomy
  (PEG) in practice. Prospective one-year follow
  up. Digestive Diseases and Sciences. 2003. 48, No
  10 2057-2063
• Schneider SM, Pouget I, Staccini P, et al.
  Quality of Life in long-term home enteral
  nutrition patients. Clinical Nutrition. 2000. 19
  (1) 23-28
• Roberge C, Tran M, Massoud C, et al. Quality of
  life and home enteral tube feeding a French
  prospective study in patients with head and neck
  or oesophageal cancer. British Journal of Cancer.
  2000. 82 (2) 263-269
• Abbott J, Webb AK, Dodd M. Quality of Life in
  Cystic Fibrosis. Journal of the Royal Society of
  Medicine, 1997 90 37-42.
• Abbott J, Gee L. Quality of Life in Children and
  Adolescents with Cystic Fibrosis Implications
  for Optimising Treatments and Clinical Trial
  Designs. Paediatric Drugs, 2003 5(1) 41-56.