Effect of Augmentative Technology on Communication and Quality of Life After Tracheostomy or Total Laryngectomy

2021 ◽  
pp. 019459982110137
Author(s):  
Catherine T. Haring ◽  
Janice L. Farlow ◽  
Marie Leginza ◽  
Kaitlin Vance ◽  
Anna Blakely ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Total Laryngectomy ◽  
Electronic Communication ◽  
Well Being ◽  
Chi Square ◽  
Communication Device ◽  
Patient Reported ◽  
Communication Devices ◽  
Related Quality

Objective Surgical procedures that render patients acutely aphonic can cause them to experience significant anxiety and distress. We queried patient perceptions after tracheostomy or laryngectomy and investigated whether introducing augmentative technology was associated with improvement in patient-reported outcomes. Methods Participants included hospitalized patients who acutely lost the ability to speak due to tracheostomy or total laryngectomy from April 2018 to December 2019. We distributed questions regarding the patient communication experience and relevant questions from the validated V-RQOL questionnaire (Voice-Related Quality of Life). Patients were offered a tablet with the electronic communication application Verbally. Pre- and postintervention groups were compared with chi-square analyses. Results Surveys were completed by 35 patients (n = 18, preintervention; n = 17, postintervention). Prior to using augmentative technology, 89% of patients who were aphonic reported difficulty communicating, specifically noting breathing or suctioning (56%), treatment and discharge plans (78%), or immediate needs, such as pain and using the bathroom (39%). Communication difficulties caused anxiety (55%), depression (44%), or frustration (62%), and 92% of patients were interested in using an electronic communication device. Patients reported less trouble communicating after the intervention versus before (53% vs 89%, P = .03), including less difficulty communicating about treatment or discharge plans (35% vs 78%, P < .01). V-RQOL scores were unchanged. Discussion Acute loss of phonation arising from surgery can be highly distressing for patients, and use of augmentative technology may alleviate some of these challenges by improving communication. Further studies are needed to identify what additional strategies may improve overall well-being. Implications for Practice Electronic communication devices may benefit patients with acute aphonia.

scholarly journals Vision-related quality of life in adults with severe peripheral vision loss: a qualitative interview study

2021 ◽  
Vol 5 (1) ◽  
Author(s):  
Ryan Lange ◽  
Abigail Kumagai ◽  
Sara Weiss ◽  
Katherine B. Zaffke ◽  
Sherry Day ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Contrast Sensitivity ◽  
Qualitative Interviews ◽  
Well Being ◽  
Vision Impairment ◽  
Qualitative Interview Study ◽  
Patient Reported ◽  
Related Quality ◽  
The Impact

Abstract Background Existing patient-reported outcome (PRO) measures may not be relevant to the full range of functional and vision-related quality of life (VR-QOL) concerns of individuals with vision impairment due to severe peripheral field loss (PFL). Measurement of VR-QOL in severe PFL is important in order to determine the effectiveness of vision rehabilitation interventions for this population. The purpose of this study was to characterize the impact of severe PFL due to retinitis pigmentosa (RP) and glaucoma on VR-QOL as the initial phase in the development of a novel PRO measure. Methods Individuals with severe PFL due to RP or glaucoma were recruited from the Kellogg Eye Center and the Association for the Blind and Visually Impaired. Participants completed semi-structured qualitative interviews, the Impact of Vision Impairment (IVI) questionnaire and the RAND 36-Item Health Survey. Interviews were analyzed by two coders using thematic analysis. A matrix analysis was conducted to compare VR-QOL by cause of severe PFL. Sample size was determined by thematic saturation. Results The study included 37 participants (19 RP, 18 glaucoma). Median best-corrected visual acuity for those with RP and glaucoma was 20/40 and 20/27.5, while Pelli-Robson contrast sensitivity was 1.2 log contrast sensitivity (logCS) and 1.1 logCS, respectively. Median domain scores on the IVI (reading, mobility, well-being) ranged from a low of − 0.2 to a high of 0.7 logits in those with RP and from 0.5 to 1.2 logits in those with glaucoma. Qualitative interviews identified six VR-QOL themes relevant across participants with both RP and glaucoma, including activity limitations, driving, emotional well-being, reading, mobility, and social function. VR-QOL concerns were largely consistent among those with severe PFL due to RP and glaucoma. These overarching themes contained content relevant to specific challenges related to severe PFL. Conclusions There are commonly occurring VR-QOL concerns among individuals with severe PFL due to RP and glaucoma. The outlined themes will serve as the basis for development of the Low Vision Severely Constricted Peripheral Eyesight (LV-SCOPE) Questionnaire.

scholarly journals Validation of a simple disease-specific, quality-of-life measure for diabetic polyneuropathy

Neurology ◽  
2018 ◽  
Vol 90 (23) ◽  
pp. e2034-e2041 ◽  
Author(s):  
Kelly G. Gwathmey ◽  
Reza Sadjadi ◽  
William B. Horton ◽  
Mark R. Conaway ◽  
Carolina Barnett-Tapia ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Diabetic Polyneuropathy ◽  
Well Being ◽  
Ease Of Use ◽  
Sensorimotor Polyneuropathy ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related ◽  
Disease Specific

ObjectiveWe studied the performance of a 15-item, health-related quality-of-life polyneuropathy scale in the clinic setting in patients with diabetic distal sensorimotor polyneuropathy (DSPN).MethodsPatients with DSPN from 11 academic sites completed a total of 231 Chronic Acquired Polyneuropathy Patient-Reported Index (CAPPRI) scales during their clinic visits. Conventional and modern psychometric analyses were performed on the completed forms.ResultsConventional and modern analyses generally indicated excellent psychometric properties of the CAPPRI in patients with DSPN. For example, the CAPPRI demonstrated unidimensionality and performed like an interval-level scale.ConclusionAttributes of the CAPPRI for DSPN include ease of use and interpretation; unidimensionality, allowing scores to be summed; adequate coverage of disease severity; and the scale's ability to address relevant life domains. Furthermore, the CAPPRI is free and in the public domain. The CAPPRI may assist the clinician and patient with DSPN in estimating disease-specific quality of life, especially in terms of pain, sleep, psychological well-being, and everyday function. The CAPPRI may be most useful in the everyday clinical setting but merits further study in this setting, as well as the clinical trial setting.

Health-Related Quality of Life Measurement in Public Health

2021 ◽  
Vol 43 (1) ◽  
Author(s):  
Robert M. Kaplan ◽  
Ron D. Hays
Keyword(s):  
Public Health ◽  
Quality Of Life ◽  
Patient Reported Outcomes ◽  
Well Being ◽  
Publication Date ◽  
Health Related Quality ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related

Patient-reported outcomes are recognized as essential for the evaluation of medical and public health interventions. Over the last 50 years, health-related quality of life (HRQoL) research has grown exponentially from 0 to more than 17,000 papers published annually. We provide an overview of generic HRQoL measures used widely in epidemiological studies, health services research, population studies, and randomized clinical trials [e.g., Medical Outcomes Study SF-36 and the Patient-Reported Outcomes Measurement Information System (PROMIS®)-29]. In addition, we review methods used for economic analysis and calculation of the quality-adjusted life year (QALY). These include the EQ-5D, the Health Utilities Index (HUI), the self-administered Quality of Well-being Scale (QWB-SA), and the Health and Activities Limitation Index (HALex). Furthermore, we consider hybrid measures such as the SF-6D and the PROMIS-Preference (PROPr). The plethora of HRQoL measures has impeded cumulative science because incomparable measures have been used in different studies. Linking among different measures and consensus on standard HRQoL measurement should now be prioritized. In addition, enabling widespread access to common measures is necessary to accelerate future progress. Expected final online publication date for the Annual Review of Public Health, Volume 43 is April 2022. Please see http://www.annualreviews.org/page/journal/pubdates for revised estimates.

Relationship between financial toxicity and health-related quality of life in patients with advanced solid tumors.

2014 ◽  
Vol 32 (30_suppl) ◽  
pp. 31-31
Author(s):  
Jonas A. De Souza ◽  
Bonnie J. Yap
Keyword(s):  
Quality Of Life ◽  
Well Being ◽  
Tumor Type ◽  
Financial Toxicity ◽  
Health Related Quality ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related ◽  
The Cost

31 Background: Financial toxicity is an important Patient-Reported Outcome (PRO). Its relationship with health-related quality of life (HRQOL) has not been previously described. Therefore, we report the relationship between financial toxicity and health-related quality of life (HRQOL) in patients with advanced cancers. Methods: The global HRQOL was measured by the Functional Assessment of Cancer Therapy-General (FACT-G) and its subscales Physical Well-Being (PWB), Social/Family Well-Being (SWB), Emotional Well-Being (EWB) and Functional Well-Being (FWB). Financial toxicity was assessed by the COST (COmprehensive Score for financial Toxicity), a PRO measure previously developed in 155 patients with advanced cancers. Correlations were calculated using Spearman's correlation. Subject data on tumor type, age, gender, race, income, insurance type and educational level were collected. Results: Fifty patients were assessed. All participants were diagnosed with advanced cancers, were receiving treatment at the time of participation, and had received treatment for at least 3 months. The median COST was 22 (range 0-44), and mean 22.51 (s.d. ±10.80). A negative correlation existed between the COST and HRQOL as measured by the FACT-G (r = -0.47, P <.001), and its subscales: PWB (r=-0.35, p < 0.05), SWB (r=-0.33, p < 0.05), EWB (r=-0.32, p < 0.05) and FWB (r=-0.41, p < 0.01). In this small sample, there were no correlations between the COST and sociodemographic characteristics. Conclusions: Results demonstrate an inverse relationship between patient-reported HRQOL and financial toxicity, suggesting that higher financial toxicity is associated with worse HRQOL. A larger study is in progress to identify cancer patients at higher risk of financial toxicity.

scholarly journals Longitudinal prospective evaluation of oral health-related quality of life in young patients undergoing fixed orthodontic appliance treatment as part of a randomised trial

2020 ◽  
Author(s):  
Mustafa Elhussein ◽  
Philip Benson
Keyword(s):  
Quality Of Life ◽  
Oral Health ◽  
Orthodontic Treatment ◽  
Well Being ◽  
Health Related Quality ◽  
Patient Reported ◽  
Before And After ◽  
Related Quality ◽  
Health Related

Abstract Background The objectives of this study were to investigate relationships between change in the aesthetic appearance before and after orthodontic treatment and patient-reported change in oral health-related quality of life (OHRQoL), and to assess the responsiveness of two OHRQoL measures to any changes from orthodontic treatment. Methods Two hundred and ten participants in a multicentre (two teaching hospitals and four specialist orthodontic practices), single blinded, randomised clinical trial with 2 parallel groups, were administered one of two age-specific questionnaires, either the Child Perceptions Questionnaire (CPQ11-14-ISF-16) or the Psychosocial Impact of Dental Aesthetics Questionnaire (PIDAQ), before and after orthodontic treatment. Clinical photographs were assessed by two groups of laypeople and orthodontists using the Index of Orthodontic Treatment Need Aesthetic Component (IOTN-AC). Results Two hundred and ten participants were randomised, and 197 completed the trial. Before and after OHRQoL data were successfully obtained from 110 participants. There was a mean reduction in the total CPQ11-14-ISF-16 scores of 3.9 (SD = 8.0), and a mean reduction of 34.2 (SD = 18.5) in the total PIDAQ score. CPQ11-14-ISF-16 demonstrated poor longitudinal construct validity (p = 0.155). Correlations between the change in total CPQ11-14-ISF-16 scores and change in IOTN-AC assessments were small for both orthodontists (r=-0.084; p = 0.516) and laypeople (r=-0.140; p = 0.225). There were higher associations between the improvement in the Social well-being (SWB) subdomain and improvement in IOTN-AC. Correlations between the changes in total PIDAQ scores and the IOTN-AC assessments, were higher in comparison to the correlations with CPQ11-14-ISF-16 (orthodontists; r = 0.223, laypeople; r = 0.025). There were no adverse effects. Conclusion CPQ11-14-ISF-16 and IOTN-AC measure different attributes. This demonstrated the role of SWB on children OHRQoL. Condition-specific measures (PIDAQ) are more responsive to change in self-reported OHRQoL than generic measures (CPQ11-14-ISF-16) after treatment. Trial Registration: The trial was registered at ClinicalTrials.gov NCT01925924.

scholarly journals Coping and Quality of Life after Total Laryngectomy

2012 ◽  
Vol 146 (6) ◽  
pp. 959-965 ◽  
Author(s):  
Tanya L. Eadie ◽  
Brianne C. Bowker
Keyword(s):  
Quality Of Life ◽  
Total Laryngectomy ◽  
Demographic Data ◽  
Cross Sectional Survey ◽  
Ways Of Coping ◽  
Alaryngeal Speech ◽  
Patient Reported ◽  
Global Quality Of Life ◽  
Related Quality

Objective. To investigate how ways of coping and traditional factors (age, sex, time postlaryngectomy, stage of disease, radiation, alaryngeal speech method) predict global quality of life, head and neck cancer–specific quality of life, and voice-related quality-of-life outcomes after total laryngectomy. Study Design. Cross-sectional survey. Setting. University-based laboratory and speech clinic. Subjects and Methods. Sixty-seven individuals who underwent total laryngectomy secondary to cancer were recruited from support groups and professional contacts. Individuals were at minimum 9 months postlaryngectomy. All outcomes were patient reported and included demographic data as well as a number of validated questionnaires: the Ways of Coping–Cancer Version (WOC-CV) scale, the Voice-Related Quality of Life (V-RQOL) scale, and the University of Washington Quality of Life (UW-QOL) composite and global QOL scores. Results. Fifty-three individuals identified a stressful aspect of their laryngectomy. As a set, traditional variables (age, time postlaryngectomy, alaryngeal speech method) accounted for only 5% of global QOL scores but between 25% and 30% of the variance of composite UW-QOL and V-RQOL scores. Time postlaryngectomy was the strongest traditional predictor. Ways of coping accounted for 23% to 32% of all QOL scores. Avoidant coping strategies (both cognitive and behavioral escape) were among the strongest predictors of poorer QOL. When traditional variables were combined with ways of coping, they together accounted for 26% to 46% of the variance of QOL outcomes. Conclusion. Coping is important to consider when evaluating postlaryngectomy outcomes, above and beyond traditionally investigated factors.

scholarly journals Lived Experiences of Adolescent Athletes Following Sport-Related Concussion

2017 ◽  
Vol 5 (12) ◽  
pp. 232596711774503 ◽  
Author(s):  
Tamara C. Valovich McLeod ◽  
Alyssa J. Wagner ◽  
Cailee E. Welch Bacon
Keyword(s):  
Quality Of Life ◽  
Emotional Health ◽  
Well Being ◽  
Health Related Quality ◽  
Adolescent Athletes ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related ◽  
Interscholastic Athletes

Background: Previous studies have identified the effect of sport-related concussion on health-related quality of life through the use of patient-reported outcome measures. However, there has been little research exploring the underlying mechanisms that influence these perceptions of health-related quality of life among adolescent athletes who have sustained a sport-related concussion. Purpose: To explore the psychosocial aspects of concussion among adolescent athletes. Study Design: Case series; Level of evidence, 4. Methods: A total of 12 interscholastic athletes (4 girls, 8 boys; mean ± SD age, 15.7 ± 1.7 years; grade level, 10.2 ± 1.4) were interviewed via a semistructured interview protocol between 15 and 30 days postinjury. Data analysis was guided by the consensual qualitative research tradition. Themes and categories emerged through consensus by a 3-person research team, and bias was minimized through the use of multiple-analyst triangulation. Results: Participants identified numerous postconcussion symptoms that resulted in increasing difficulty with emotions (eg, irritable, easily frustrated), roles at school (eg, concentration difficulties, fatigue), and roles in their social environment (eg, letting the team down, not being able to contribute to sport). As a result, participants expressed how they tried to minimize or mask symptoms to decrease the potential of being viewed differently by their peers. Conclusion: Adolescent athletes perceived a significant effect of sport-related concussion on numerous areas of psychosocial and emotional health and well-being. Anticipatory guidance—with education regarding the possible signs and symptoms, risk factors, and recovery expectations following a concussion—is important to include in postinjury management. A better understanding of sport-related concussion and expected recovery could help to improve perceptions of this injury among interscholastic athletes. Additionally, best practices should be identified to assist health care professionals and school personnel in the development of temporary adjustments or formal academic adjustment policies in the secondary school setting, therefore ensuring that the patients receive the support that they need to maintain their roles as students.

scholarly journals Yoga & Cancer Interventions: A Review of the Clinical Significance of Patient Reported Outcomes for Cancer Survivors

2012 ◽  
Vol 2012 ◽  
pp. 1-17 ◽  
Author(s):  
S. Nicole Culos-Reed ◽  
Michael J. Mackenzie ◽  
Stephanie J. Sohl ◽  
Michelle T. Jesse ◽  
Ashley N. Ross Zahavich ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Cancer Survivors ◽  
Clinical Significance ◽  
Patient Reported Outcomes ◽  
Well Being ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related ◽  
Clinically Significant

Limited research suggests yoga may be a viable gentle physical activity option with a variety of health-related quality of life, psychosocial and symptom management benefits. The purpose of this review was to determine the clinical significance of patient-reported outcomes from yoga interventions conducted with cancer survivors. A total of 25 published yoga intervention studies for cancer survivors from 2004–2011 had patient-reported outcomes, including quality of life, psychosocial or symptom measures. Thirteen of these studies met the necessary criteria to assess clinical significance. Clinical significance for each of the outcomes of interest was examined based on 1 standard error of the measurement, 0.5 standard deviation, and relative comparative effect sizes and their respective confidence intervals. This review describes in detail these patient-reported outcomes, how they were obtained, their relative clinical significance and implications for both clinical and research settings. Overall, clinically significant changes in patient-reported outcomes suggest that yoga interventions hold promise for improving cancer survivors' well-being. This research overview provides new directions for examining how clinical significance can provide a unique context for describing changes in patient-reported outcomes from yoga interventions. Researchers are encouraged to employ indices of clinical significance in the interpretation and discussion of results from yoga studies.

scholarly journals Health-related quality of Life Instrument in Neuromuscular Disorders

2021 ◽  
Vol 39 (2 Suppl) ◽  
pp. 93-109
Author(s):  
Ohyun Kwon
Keyword(s):  
Quality Of Life ◽  
Functional Status ◽  
Neuromuscular Disorders ◽  
Well Being ◽  
Life Questionnaire ◽  
Health Related Quality ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related

Medicine places its ultimate purpose at prolonging people’s healthy lives. Health-related quality of life (HRQoL) has emerged as one of the key measures of medical practice. HRQoL, the most important patient-reported outcome, should include not only functional status and disability as result of a disease but also patient’s handicaps and restriction of social participation as result of the disease. Neuromuscular disorders as a whole comprise of wide constellation of various symptoms and signs, which in turn, affect negative influence on patients’ functional status, psychological well-being, and tend to restrict patients’ financial and social achievement. The most influential HRQoL measures, either generic or neuromuscular disease-specific, will be presented and discussed. Medical Outcomes Study Short Form 36-Item, EuroQoL-5 Dimensions, Individualized Neuromuscular QoL Questionnaire, Norfolk Quality of Life Questionnaire-Diabetic Neuropathyare among the lists.

scholarly journals Health-related quality of life in patients with hemoglobinopathies

Hematology ◽  
2012 ◽  
Vol 2012 (1) ◽  
pp. 284-289 ◽  
Author(s):  
Julie A. Panepinto
Keyword(s):  
Quality Of Life ◽  
Well Being ◽  
Health Related Quality ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related ◽  
Patients Experience ◽  
The Impact ◽  
Health And Well Being

Abstract The use of patient-reported outcomes to measure the health and well-being of patients from their perspective has become an acceptable method to determine the impact of a disease and its treatment on patients. In patients with hemoglobinopathies, prior work has demonstrated that patients experience significant impairment in health-related quality of life (HRQL, a type of patient-reported outcome). This work has provided a better understanding of the burden that these patients experience and the factors that are associated with worse HRQL. The recent development of disease-specific HRQL instruments in sickle cell disease heralds new opportunities to explore the impact of the disease and its treatment on patients. The standards necessary to incorporate the measurement of HRQL into clinical trials are now well outlined by regulatory agencies. Measuring HRQL within a clinical practice setting and outside of the healthcare setting while the patient is at home are now possible and present new opportunities to understand the health and well-being of patients with hemoglobinopathies.

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