532693

research-article2014

NCPXXX10.1177/0884533614532693Nutrition in Clinical PracticeKwong et al

Clinical Research

The Experiences of Patients With Advanced Head and Neck Cancer With a Percutaneous Endoscopic Gastrostomy Tube: A Qualitative Descriptive Study

Nutrition in Clinical Practice Volume 29 Number 4 August 2014 526­–533 © 2014 American Society for Parenteral and Enteral Nutrition DOI: 10.1177/0884533614532693 ncp.sagepub.com hosted at online.sagepub.com

Janna P. Y. Kwong, RD, BASc1,2; Edith J. Stokes, RD, BASc1; Elaine C. Posluns, RD, BASc1; Margaret I. Fitch, RN, PhD1; Alison McAndrew, BA, RAP1,3; and Katherine A. Vandenbussche, RD, MHS1

Abstract Background: While the percutaneous endoscopic gastrostomy (PEG) tube has become an established part of the management regimen for patients with head and neck cancer (HNCA) with impaired nutrition and functional status, limited research has explored the impact and experiences of living with a PEG tube from the patient’s perspective. This qualitative study serves as a follow-up investigation undertaken to describe the experiences of patients with advanced HNCA living with a PEG tube. Materials and Methods: Eligible patients from convenience sampling were invited to participate until data saturation was reached. In-depth interviews were conducted with consenting participants. Qualitative descriptive design guided the content analysis of the interview transcripts. Results: Of the 49 patients invited, a total of 15 participants’ interviews were transcribed and analyzed. Each interview was 15–90 minutes in length. Four of 22 content codes were chosen to describe the overarching ideas of the progressive experience of a patient’s journey from the initial decision-making process around tube insertion through to its removal. Difficulty swallowing and weight loss emerged as primary factors for PEG tube insertion, and all participants became accustomed to living with the tube. Resuming a complete oral diet was a gradual transition. All participants recognized the value of the tube, and most acknowledged its necessity for their survival. Conclusions: Results describe the overall PEG tube experience as a dichotomy. While there were issues with the PEG tube, all participants found the tube to be beneficial. This study provides invaluable insight from a practice perspective. (Nutr Clin Pract. 2014;29:526-533)

Keywords enteral nutrition; gastrostomy; quality of life; head and neck cancer; nutritional status; qualitative research; cancer treatment; feeding tube; nutritional support

Head and neck cancer (HNCA) is among the top 10 most frequent types of cancers worldwide with evidence that the incidence is increasing.1,2 It is estimated that more than 52,000 Americans developed HNCA in 2012.3 Of patients with HNCA, 37.7%–59% are malnourished, having lost 10% of their body weight, at time of presentation.4 Deterioration of nutrition status is multifactorial and often associated with eating and swallowing difficulties.5 Side effects of multimodal cancer treatment in the HNCA population, such as mucositis, xerostomia, nausea, and vomiting, contribute to decreased nutrient intake and weight loss, which leads to increased adverse outcomes such as decreased treatment response and increased morbidity and mortality.1,6 Maintaining adequate nutrition status poses a significant challenge for patients with HNCA, and therefore, providing supportive nutrition therapy to facilitate sufficient nutrition and hydration during medical treatment is typically part of their management regimen.7,8 Feeding by gastrostomy tube (G-tube) is recognized as a supportive nutrition therapy. Patients who have a G-tube experience less overall weight loss and fewer hospitalizations and treatment interruptions.7-9 The Odette Cancer Centre (OCC) is an outpatient cancer treatment facility at Sunnybrook Health

Sciences Centre (SHSC) in Toronto, Canada. Patients with HNCA at high risk of malnutrition receiving combined chemotherapy and radiation are offered the percutaneous endoscopic gastrostomy (PEG) tube as one type of G-tube inserted as an outpatient procedure prior to or within the first few weeks of treatment initiation. The benefit of PEG tube insertion from a nutrition and health perspective is well known.2,8-11 However, previous research addressing quality of life (QoL) with advanced HNCA reports a worsening of QoL after feeding tube insertion. Primary outcomes of these studies suggest negative impacts, From 1Sunnybrook Health Sciences Centre, Toronto, Canada; 2 Runnymede Healthcare Centre, Toronto, Canada; and 3Toronto Central Regional Cancer Program, Toronto, Canada. Financial disclosure: None declared. This article originally appeared online on May 28, 2014. Corresponding Author: Edith J. Stokes, RD, BASc, Sunnybrook Health Sciences Centre, 2075 Bayview Avenue, Toronto, ON M4N 3M5, Canada. Email: [email protected]

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including leakage, disturbed sleep, restricted ability to go out, and burden placed on family members.12,13 In a more recent study, Merrick and Farrell4 used Q-methodology—a systematic study of subjectivity combining qualitative and quantitative research techniques—to rank statements according to the extent to which these reflected HNCA patients’ experience of PEG tube feeding. The results revealed that most participants adapted positively and accepted the feeding tube. Undergoing treatment for HNCA brings with it a plethora of challenges affecting physical, emotional, and psychological well-being. When treatment necessitates placement of a feeding tube, understandably there are often a host of emotions and adaptations required. To gain better insight of the experience of the HNCA population with feeding tubes, as well as allow further evaluation of the OCC outpatient G-tube program, Osborne et al14 used a questionnaire with closed- and openended questions to explore the associated QoL. Results revealed that 84% of the 51 participants expressed the PEG tube had a positive/neutral effect on their QoL. It was also discovered that participants had an abundance of information they were willing to share about their experience. This study serves as a follow-up investigation to further describe experiences of patients with advanced HNCA registered in the OCC program regarding living with a PEG tube. The aim of the study was to (1) lend support to the decisionmaking process for future PEG tube candidates, (2) enhance clinicians’ understanding of the patient’s perspective to provide sound patient care, and (3) allow for ongoing improvements of the OCC outpatient G-tube program.

Methods The study used a qualitative descriptive design to capture the rich narratives of the HNCA participants’ perceptions of the experience living with a PEG tube. Convenience sampling was used to recruit eligible participants from a database containing all patients with HNCA who received PEG tubes as outpatients at the OCC until data saturation was achieved. Inclusion criteria included patients with advanced HNCA who had completed their course of cancer treatment (typically combined chemotherapy and radiation therapy) as an outpatient at the OCC, were at least 18 years of age, were English speaking (since no translator was provided), and had the PEG tube inserted and removed within 3 years of the interview. Hence, all participants had their PEG tube removed at the time of the interview. Exclusion criteria included patients who had the PEG tube inserted for palliative reasons, had difficulty communicating due to neurological conditions or mental impairment, and took part in previous studies and wished not to be contacted. At the time this research was conducted, PEG tubes were offered exclusively, and hence, only participants who had a PEG tube inserted were included. Presently within the OCC’s

outpatient program, G-tubes are provided by 2 services: (1) gastroenterology and (2) intervention radiology. The G-tube program is coordinated by the OCC dietitians and consists of the physicians and nurses within a multidisciplinary head and neck cancer team. Tubes are offered to appropriate patients with advanced disease typically undergoing combined modality treatment. The team works together to educate patients regarding placement, care, and use of the tube and provide ongoing follow-up to ensure sufficient nutrition and hydration, minimize risk of complications, and ensure success for patients with a G-tube. The study was approved by SHSC’s Research Ethics Board. A letter of introduction, with an option of declining participation, was sent to eligible participants. Follow-up phone calls formally inviting these individuals to the study were made. Those who expressed interest were mailed consent forms and interviews scheduled. Interviews were conducted as per the participant’s request either via the telephone or face-to-face in a private, comfortable environment at SHSC between February 2011 and February 2012.

Data Collection An objective, highly trained research coordinator, unfamiliar to the patients, conducted the interviews. A semi-structured interview guide with open-ended questions was designed to gather selected demographics and learn about participants’ experience with the PEG tube from initial introduction and insertion, as well as living with the tube until its removal. The neutral questions were used to guide the participants in sharing their experience with the PEG tube, including its benefits and challenges. After 2 interviews were completed and transcribed, the research team reviewed the transcripts to ensure that the questions elicited information that answered the research question. Ineffective questions were eliminated and replaced.15 Responses were reviewed for congruency with the study’s purpose; as new aspects emerged and were explored, the interview guide was reevaluated and revised. The semi-structured interview guide is depicted in Table 1.

Data Analysis All interviews were tape-recorded and transcribed verbatim. Qualitative data analysis occurred concurrently with data collection. After 3 interviews were completed and transcribed, 1 transcription was randomly selected for development of a coding manual. Each investigator reviewed the entire transcription separately and identified text segments that appeared meaningful in addressing the research questions. The investigators then discussed their impressions of the interview data together and worked to gain consensus on meaningful content text segments for the creation of a coding system. Using the coding system, each transcript was fully coded by 1 investigator and the data

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Table 1.  Semi-Structured Interview Guide Questions Designed to Gather Selected Demographics and Learn About Participants’ Experience With the PEG Tube. Semi-Structured Interview Guide Questions 1. Tell me a bit about your experience with cancer which led to the tube being inserted. 2. What was it like living with the percutaneous endoscopic gastrostomy (PEG) tube? 3. How was your family/social life impacted? 4. What kinds of challenges did you face while living with the tube? 5. What were the benefits you saw in having the PEG tube? 6. What were the drawbacks you experienced in having the PEG tube? 7. What was it like for you after the tube was removed? 8. What kinds of improvements could be made to improve future patients’ experiences? 9. If you could give one piece of advice to another patient, what would be that advice? 10. Anything else you would like to add or comment on? Additional probes were used to guide the conversation and add depth.

managed using NVivo 9 (QSR International, Doncaster, Victoria, Australia). After the content in each category was drawn together, the investigators reviewed and discussed each code to understand key ideas and summarize the perspectives participants have shared.

Measures to Enhance Rigor Measures were taken to enhance the rigor of the qualitative research and ensure that participants’ experiences were accurately represented and the data and analytical process could be deemed credible, applicable, consistent, and neutral.16 The letter of introduction and consent form clearly outlined the intent and purpose of the study to the potential participants. Notes were made throughout the study to document the decisionmaking trail and concepts that emerged during the data collection and analysis process. The recorded interviews were transcribed and checked against the original recording by different individuals. After each content coding session, a debriefing with the research team members ensured consistency in coding and analysis. This process helped to ensure the experiences captured were a true representation of the participants’ perspectives and helped validate researcher content categories and interpretation of the findings. In the Results section, italics represent direct quotations, ellipses (. . .) depict omitted words/phrases, and brackets [] denote words included for clarification.

Results The eligibility and enrollment of study participants are shown in Figure 1. Of the 16 participants who were interviewed, 1 participant’s data were ineligible due to an inability to converse well in English and hence were not analyzed. Data saturation was reached within the 15 interviews. A summary of the participants’ demographics is shown in Table 2. Most participants interviewed were male, older than 50 years, and married; had postsecondary education; received

radiation and chemotherapy; and lived with a PEG tube

The Experiences of Patients With Advanced Head and Neck Cancer With a Percutaneous Endoscopic Gastrostomy Tube: A Qualitative Descriptive Study.

Background: While the percutaneous endoscopic gastrostomy (PEG) tube has become an established part of the management regimen for patients with head a...
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