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1Ailsa Brotherton Senior Research Fellow (email@example.com) The Impact of Percutaneous Endoscopic Gastrostomy Feeding upon Quality of Life in AdultsAilsa BrothertonSenior Research Fellow
2Small group discussions What is QoL?Define QoL in one sentenceDiscuss the factors that are important to your QoL.
3QoLQoL is a dynamic construct which is constantly being negotiated by the individual in association with his/her environment and those around him.Health Related Quality of Life (HRQoL)Meaningful measure of the health related issues associated with an individual’s QoL e.g. measures of the impact of symptoms and treatment interventions.
4Introduction 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 SF36Developed 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 carersDeveloped a preliminary PEG QoL assessment tool
5BackgroundVery few studies have been reported that formally measure QoL in the PEG populationLoeser 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 C30Concluded: QoL is reduced in patients on HETF, partly explained by malnutrition.(Schneider et al, 2000;Roberge 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 thisNo known validated QoL assessment tools that have been developed and validated specifically for patients with a PEGNumerous methodological difficulties in measuring disease specific health related QoL(Abbott, Webb and Dodd, 1997, Abbott and Gee, 2003)
6AimTo 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’ perspectivesApproval was obtained from the Local Research and Ethics Committee and informed consent was sought.
7Methods Cross sectional qualitative design Purposive sampling Semi-structured interview approach developed to provide a consistent framework of questions for the patients and carersSemi-structured interviewsFormat developed based on:Available literature regarding patients’/carers’ views of PEG feedingPersonal experiences of clinical practiceDiscussions with HCP’s in the field.Open and closed questions falling broadly into two categories:Service provisionImpact of feeding on daily lifeEligibility: All adult patients receiving enteral feeds via a PEG within an NHS Trust, in the Northwest of England.
8Data collection and analysis Subjects: 15 adult patients19 carers of adultsLocation: subject’s 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 writtenData analysisInterviews transcribed and analysed manually:Open questions:Systematic searching for relevant phrasesExtracting and coding of phrasesSequential stages of reduction and orderingIdentification of emerged themesClosed Questions: Results presented as percentages of the responses given.Independent analysis of one third of the transcripts by second researcher
9Results: Difficulties arising from PEG feeding Difficulties experiencedAdult Patients (n=15)Yes No UnsureCarers of Adult Patients (n=19)Yes No UnsureNausea1 (7%)12 (80%)2 (13%)1 (5%)15 (79%)3 (16%)Vomiting3 (20%)10 (67%)4 (21%)14 (74%)Diarrhoea6 (32%)12 (63%)Infection of the PEG site5 (33%)9 (60%)13(68%)2 (11%)Leakage8 (42%)9 (47%)Over granulation11 (73%)5 (26%)11 (58%)
10Results: responses to closed questions Are you happy withthe feeding regimen?Do you experience any difficulties administering the feed?
11Results cont.In your view, do you (the patient) have an acceptable QoL?Do you receive sufficientsupport from the HCP’s?
12Propensity for disagreement Ranking of the questions by propensity to generate disagreement and estimated odds forrelationshipsPropensity for disagreementEstimated odds* (probability)PatientandCarerProfessionalQ3 Has feeding been successful?Least0.10 (0.09)0.08 (0.08)0.05 (0.05)0.02 (0.02)Q4. Is the feeding regimen appropriate?0.15 (0.13)0.13 (0.11)0.08 (0.07)0.04 (0.03)Q5. Would you be in favour of the patient having the PEG reinserted?0.31 (0.23)0.26 (0.21)0.07 (0.07)Q2. Did the patient/carer receive sufficient information?0.45 (0.31)0.38 (0.28)0.22 (0.18)0.11 (0.10)Q8. Is sufficient support provided from HCPs?Q7. Does the patient have an acceptable QoL?0.67 (0.40)0.57 (0.36)0.33 (0.25)0.16 (0.14)Q6. Would you choose to stop feeding if given the choice?0.72 (0.42)0.61 (0.38)0.36 (0.26)0.17 (0.15)Q1. Did you/ the patient have a choice in the decision to place the PEG?Most0.77 (0.43)0.65 (0.39)0.18 (0.15)Questions 3 and 4 generate similar perceptions between respondents.Differences in perceptions are greater for Questions 5, 2 and 8The differences in perceptions are greatest for Questions 7, 6 and 1.* The odds are the relative odds of disagreement to non-disagreement. Hence odds of 0.18, for example, imply 18 disagreements for every 118 adults with PEG and hence a probability of 18/118 = Similarly odds of 0.02 imply 2 disagreements for every 102 adults, giving 2/102 = 0.02.
13Implications for clinical practice The effect of role pairing was significant (p<0.025).Broadly speaking:Disagreement between a carer and a health care professional is estimated at one and a half times as likely as between two health care professionals.The gap in perceptions between patient and professional is larger with patient and professional estimated as two and a half times as likely to disagree as two professionals.Perhaps even more surprising, the largest gap in perceptions is between the patient and their carer, since the patient and their carer are estimated almost three times more likely to disagree compared with two professionals.
14Emerging 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 sleepIt 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 don’t go out anymore’‘Well I have to be here all day everyday; one carer comes in to sit with him for 2 hours aweek while I go and do my shopping’‘Everything about his regimen restricts my life. He’s feeding during the day now and it is stopping us from going out. I’m quite bitter about it because he hasn’t got that long to live’Restricted choice of clothes/leakage of feed on clothes‘I can’t 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 can’t afford to let it affect you, life’s 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’
15Themes cont…Missing food / drinks‘I just miss eating and drinking’‘I only cook dishes that I know he didn’t like .I couldn’t 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 can’t even have a drink together at Christmas or even a piece of cake or a cup of tea. I don’t 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; he’s 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’
16Feelings towards PEG feeding DepressionAngerFrustrationReliefFearWorryGratitudeCarers onlyUpsettingQueasiness
17ConclusionWide range of patient and carer experiences and perspectivesCannot generalise about the impact of PEG feeding on individual patients and their familiesIncreased social support / support for daily life required, planned on an individualised basisNeed to develop objective way to measure the impact of PEG feeding on QoLFurther planned researchPsychometric validation of the PEG QoL tool for the 3 subgroups: Adult patients, carers of adults, carers of children
18Steps in the Development and testing of QoL Tools
19Acknowledgements Sincere thanks to: The patients and carers who participated.My supervisory team:Professor Janice Abbott - Director of StudiesProfessor Peter Aggett - Second supervisorSeedcorn Funding Committee/ NHS Trust
20ReferencesLoeser,C, von Herz U, KÜchler T, et al. Quality of Life and Nutritional State in Patients on Home Enteral Tube Feeding. Nutrition Vol 19,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 , No 10;Schneider SM, Pouget I, Staccini P, et al. Quality of Life in long-term home enteral nutrition patients. Clinical Nutrition (1): 23-28Roberge 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 (2)Abbott J, Webb AK, Dodd M. Quality of Life in Cystic Fibrosis. Journal of the Royal Society of Medicine, 1997; 90: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):