The Development of a Tracheostomy-Specific Quality of Life Questionnaire

Smith, Kristine A.; Bosch, J. Douglas; Pelletier, G.; MacKenzie, Marianne; Hoy, Monica

doi:10.1177/0003489416644619

Cited by 14 publications

(7 citation statements)

References 14 publications

(37 reference statements)

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“…The mean (SD) PedsQL scores were as follows: total impact score was 76 (SD = 19); parental HRQOL = 76 (19); physical functioning = 73 (19); emotional functioning = 77 (24); social functioning = 77 (27); cognitive functioning = 78 (23); communication problems = 78 23; worry = 69 (24); daily activity 67 (30); and family relationship = 81 (25). See Table II.…”

Section: Resultsmentioning

confidence: 99%

“…The items with the five lowest scores (having the most problems with) were, "I worry about my child's future," mean (SD) = 52 (37); "I feel tired during the day," mean (SD) = 58 (28); "I feel tired when I wake up in the morning," mean (SD) = 60 (27); "Family activities taking more time and effort," mean (SD) = 65 (34); and "Difficulty finding time to finish household task," mean (SD) = 68 (32).…”

Section: Resultsmentioning

confidence: 99%

“…15,26 There are also pilot studies with smaller sample sizes or used less well-known instruments examining quality of life among tracheostomy. [26][27][28][29][30][31] The results have shown that tracheostomy patients and their families can adjust to their condition but overall QOL scores are lower when compared to healthier populations.…”

Section: Discussionmentioning

confidence: 99%

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The Family Impact of Having a Child with a Tracheostomy

2020

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Objectives: Measure the quality of life among families with children with tracheostomies. Methods: We performed a prospective cross-sectional analysis of families with children with tracheostomies utilizing the PedQL Family Impact Module-a validated quality of life assessment. We determined if scores were impacted by demographics using regression analysis. We also compared the tracheostomy sample's scores to a previously published cohort of children with severe cerebral palsy and birth defects that required home nursing or nursing home placement using the student's t-test. We determined the effect size of the difference between the two groups using the Cohen's d test. Results: Ninety-eight families are included in the study. The average (SD) age of tracheostomy placement was 1.6 (3.5) years. The population was 60% (59/98) male and 39% (38/98) Hispanic. The principal reason for tracheostomy was due to respiratory failure (76 out of 98; 78%). The mean (SD) total Family Impact score was 76 (19). The lowest domain score was daily activity problems, mean (SD) = 67 (30) followed by worry (mean = 69, SD = 24). The lowest question score was, "I worry about my child's future," mean (SD) = 52 (37). When compared to the comparison group of medically fragile children, the scores were statistically similar except for communication totals where tracheostomy patients reported superior scores (78.3 vs. 62.9, 95% CI, −26 to −4.8, P = .005, Cohen's d = −0.66). Conclusion: The presence of a tracheostomy is associated with QOL scores like other medically fragile children.

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

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The Family Impact of Having a Child with a Tracheostomy

2020

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“…At the time of inception, there were no validated tracheostomy-related QOL surveys. However, a more recently published survey and recent systematic review both reiterate these same domains as the primary drivers in tracheostomy patients’ QOL 9 17. Future studies will develop and incorporate a validated QOL survey for tracheostomy patients and will include measuring functional outcomes for speech, breathing and swallowing.…”

Section: Discussionmentioning

confidence: 99%

Patient-specific tracheal stoma plug improves quality of life for tracheostomy patients

et al. 2022

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ObjectiveDespite being life-saving, tracheostomies carry numerous social, functional and quality of life (QOL) drawbacks. The aim of this study was to design and test the use of small, discrete, customised tracheostomy stoma plugs in patients who are not tracheostomy-dependent during the day, with the overall goals to demonstrate the feasibility of creating these patient-specific devices and obtain preliminary results of impact on QOL.MethodsWe developed and evaluated a novel patient-specific ‘stoma plug’ to improve the lives of those with tracheostomies who did not have a daytime ventilation requirement. The stoma plug was designed and manufactured using three-dimensional printing for each subject. Measurements of the patient’s fistula were obtained in the clinic and the features of the stoma plug were created to match the fistula and trach tube dimensions. Patients were monitored for any changes in their eligibility status and for complications associated with using the ‘stoma plug’. A survey questionnaire examining multiple QOL domains was performed predevice and at 1 and 6 months of use.ResultsDevices were designed and produced for 35 patients enrolled across two institutions. The survey results demonstrate statistically significant improvement in quality-of-life scores (p<0.05) in all six domains queried (Overall QOL, voice strength, voice clarity, water tolerance, swallowing and breathing) with substantial improvements in social isolation and skin irritation reported.ConclusionOur study demonstrates that a patient specific device can be created to ameliorate many of the drawbacks associated with a tracheostomy tube, with the potential to revolutionise tracheostomy care.

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“…Changes in body image, breathing and communication seem to condition a person's ability to accept the changes in his/her new self (Bickford et al, 2013). These changes are also likely to reduce self-esteem, the perception of self-efficacy (Valiee et al, 2016), and often limit social activity and interpersonal relations (Bickford et al, 2013;Smith et al, 2016). Thus, the quality of life of these people can be strongly affected (Bickford et al, 2013).…”

Section: Introductionmentioning

confidence: 99%

Nursing interventions for the promotion of tracheostomy self‐care: A scoping review

Queirós

Pinto

Brito

et al. 2021

Journal of Clinical Nursing

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Aims and objectives: To map nursing interventions, their characteristics, and outcomes, in promoting self-care of the person with a tracheostomy. Background: The development of competencies in self-care of a person with a tracheostomy is recognised as one of the most significant nursing intervention areas for the promotion of autonomy, prevention of complications and adaptation. Identifying nursing interventions for the promotion of self-care of the person with a tracheostomy enables enhanced clinical practice knowledge within different care contexts and the identification of gaps in the available evidence. Design: The Joanna Briggs Institute (JBI) methodology was used to perform this scoping review. Method: A search was conducted on the CINAHL, Scopus, Web of Science, PubMed, JBI Database of Systematic Reviews and Implementation Reports, and Cochrane Database of Systematic Reviews. The search for grey literature included Portugal´s Open Access Scientific Repository, OpenGrey, and ProQuest Dissertations and Theses. Studies published in Portuguese, English, Spanish and French were included. The PRISMA-ScR checklist was used.Results: From a total of 4,224 identified articles, 31 were included in this review.Multiple nursing interventions were identified and grouped into four types of action: informing, managing, determining and attending. Although most interventions are implemented with the face-to-face method, there is a growing interest in using technologies for this purpose. The dose is the characteristic most poorly described in interventions. Various results were obtained; however, valid assessment tools were not always used.Conclusions: Designing and testing intervention programmes for the promotion of self-care of the person with a tracheostomy is necessary, based on available and robust evidence to guide clinical practice.Relevance to clinical practice: This review allowed to systematise nursing interventions to promote self-care of the person with a tracheostomy. The use of combined interventions and methodologies is likely to be more effective in care delivery.

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The Development of a Tracheostomy-Specific Quality of Life Questionnaire

Abstract: The TQOL has moderately strong internal consistency, convergence validity, and test-retest reliability. While additional refinement and validation may improve the questionnaire, these initial results are promising and support further development of this tool.

Cited by 14 publications

References 14 publications

The Family Impact of Having a Child with a Tracheostomy

The Family Impact of Having a Child with a Tracheostomy

Patient-specific tracheal stoma plug improves quality of life for tracheostomy patients

Nursing interventions for the promotion of tracheostomy self‐care: A scoping review

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