Dataset Information

Patient-Reported Dysphagia After Thyroidectomy: A Qualitative Study.

ABSTRACT: Importance:It is important that clinicians understand consequences of thyoridectomy on swallowing from the patient perspective to better care for this population. Objective:Using rigorous qualitative methodology, this study set out to characterize the effect of swallowing-related symptoms after thyroidectomy on patient quality of life and swallowing-related outcomes. Design, Setting, and Participants:Prospective, grounded theory analysis of interviews with 26 patients at 3 time points after thyroidectomy (2 weeks, 6 weeks, and 6 months). Data were collected from an ongoing clinical trial (NCT02138214), and outpatient interviews were conducted at the University of Wisconsin Hospital and Clinics. All participants were age 21 to 73 years with a diagnosis of papillary thyroid cancer without cervical or distant metastases and had undergone total thyroidectomy. Exclusion criteria were preexisting vocal fold abnormalities (eg, polyps, nodules), neurological conditions affecting the voice or swallowing ability, and/or development of new-onset vocal fold paresis or paralysis (lasting longer than 6 months) after total thyroidectomy. Interventions:Total thyroidectomy. Main Outcomes and Measures:Symptoms of dysphagia and related effects on quality of life elicited through grounded theory analysis of semistructured interviews with patients after thyroidectomy designed to foster an open-ended, patient-driven discussion. Results:Of the 26 patients included, 69% were women (n?=?18); mean (SD) age, 46.4 (14.1) years; mean (SD) tumor diameter 2.2 (1.4) cm. Two weeks after thyroidectomy, 80% of participants (n?=?20) reported at least 1 swallowing-related symptom when prompted by the interview cards; during the open interview, 53% of participants (n?=?14) volunteered discussion of swallowing-related symptoms unprompted. However, only 8% of participants in this study (n?=?2) qualified for a follow-up dysphagia evaluation, indicating that the majority of reported symptoms were subjective in nature. Six weeks and 6 months after thyroidectomy, 42% (n?=?11) and 17% (n?=?4) of participants, respectively, reported continued swallowing symptoms using the prompts; 12% (n?=?3) discussed symptoms without prompting cards at both time points. Conclusions and Relevance:Swallowing symptoms after thyroidectomy are underreported in the literature. This study revealed that as many as 80% of patients who have thyroidectomy may experience swallowing-related symptoms after surgery, and many develop compensatory strategies to manage or reduce the burden of these symptoms. Considering the large number of individuals who may experience subjective dysphagia, preoperative counseling should include education and management of such symptoms.

SUBMITTER: Krekeler BN

PROVIDER: S-EPMC5876907 | biostudies-literature | 2018 Apr

REPOSITORIES: biostudies-literature

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Patient-Reported Dysphagia After Thyroidectomy: A Qualitative Study.

Krekeler Brittany N BN Wendt Elizabeth E Macdonald Cameron C Orne Jason J Francis David O DO Sippel Rebecca R Connor Nadine P NP

JAMA otolaryngology-- head & neck surgery 20180401 4

<h4>Importance</h4>It is important that clinicians understand consequences of thyoridectomy on swallowing from the patient perspective to better care for this population.<h4>Objective</h4>Using rigorous qualitative methodology, this study set out to characterize the effect of swallowing-related symptoms after thyroidectomy on patient quality of life and swallowing-related outcomes.<h4>Design, setting, and participants</h4>Prospective, grounded theory analysis of interviews with 26 patients at 3 ...[more]

PMID: 29522149

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Project description:BACKGROUND:This article addresses patient-reported outcome (PRO)-based follow-up used as a substitute for regularly scheduled follow-ups. In PRO-based follow-up, patients' PRO data filled in by the patients at home are used by clinicians as a decision aid to identify those who need clinical attention based on an automated PRO algorithm, clinical attention being either a phone call or a physical consultation. A physical consultation in the outpatient clinic prompted by the patient's PRO is termed a "PRO consultation." In this multi-perspective qualitative study, we explored the influence of patients' self-reported data on patient-clinician interaction during PRO consultations in epilepsy outpatient clinics. Interpretive description was the methodological approach, applying data from participant observations, informal interviews with clinicians, and semi-structured interviews with clinicians and patients. RESULTS:We found that application and deliberate use of patients' PRO measures can affect patient-clinician interaction, promoting patient involvement in terms of improved communication and increased patient activation. These findings reflect the general patterns that have been reported in the literature. In addition, we found that PRO measures also may induce unmet expectations among some patients that can have a negative effect on patients' experiences of the interaction and their follow-up experience in general. We extracted two thematic patterns that represent PRO measures' potential for patient involvement in the patient-clinician interaction. The first pattern represents enablers, and the second pattern represents barriers for PRO measures to affect patient involvement. CONCLUSIONS:Applying PRO measures in clinical practice does not automatically enhance the patient-clinician interaction. To strengthen the benefits of PRO measures, the following supplementary clinical initiatives are suggested: summarizing and reporting the PRO measures back to the patient, considering carefully which PRO measures to include, training clinicians and assuring that the patients' introduction to PRO-based follow-up clarifies expectations.

Project description:BackgroundUse of patient-reported outcome measures (PROM) in clinical practice can offer clinicians important information about the impact of illness on patients and their quality of life. Electronic reporting of patient-reported outcomes (ePROs) provide quick access of this information to the health care team. Although this type of information is acknowledged to be critical to not only improving the quality of care but also involving patients in care planning, little is known about how ePRO reports can be used in nephrology clinics to enhance person-centered care.ObjectiveThe purpose of this research was to examine how ePROs were used in home dialysis clinics.DesignA pilot qualitative research design was employed.SettingThe study was conducted in 2 home dialysis clinics over 6 months.PatientsA total of 99 home dialysis patients and 12 nurses participated in the study.MeasurementsPatients completed 2 ePROs (the Edmonton Symptom Assessment System revised for renal patients and Kidney Disease Quality of Life-36) prior to their clinic appointment, and results were given to their health care providers. Nurses saw patients first, along with ePRO data. Patients and nurses consented to having their clinic interactions observed and audio recorded (n = 169).MethodsSummative content analysis was used to synthesize the data.ResultsThe ePRO data were used to discuss 24 specific issues (brought up a total of 456 times over 165 interactions), most frequently: itchiness (n = 55), appetite (n = 51), problems with sleeping (n = 50), tiredness (n = 46), and shortness of breath (n = 45) as well as overall patient health and the general effects of kidney disease on the patient's daily life. The issues that most often prompted a change in care plan, referral to another health care professional, or further assessment included itching (n = 23), depression (n = 18), tiredness (n = 13), sleeping (n = 12), anxiety (n = 11), and disease interfering with daily life (n = 7).LimitationsLimitations include the duration of follow-up (6 months), the restriction to 2 home dialysis clinics, and the potential for the Hawthorne effect due to observation.ConclusionsUse of these ePROs in the home dialysis clinics provided useful information that guided focused assessments and augmented standard assessments to support person-centered care. Further studies are warranted to identify whether this practice offers benefits over usual care.

Project description:BackgroundThe use of patient-reported outcome measures (PROMs) to provide healthcare professionals with peer benchmarked feedback is growing. However, there is little evidence on the opinions of professionals on the value of this information in practice. The purpose of this research is to explore surgeon's experiences of receiving peer benchmarked PROMs feedback and to examine whether this information led to changes in their practice.MethodsThis qualitative research employed a Framework approach. Semi-structured interviews were undertaken with surgeons who received peer benchmarked PROMs feedback. The participants included eleven consultant orthopaedic surgeons in the Republic of Ireland.ResultsFive themes were identified: conceptual, methodological, practical, attitudinal, and impact. A typology was developed based on the attitudinal and impact themes from which three distinct groups emerged. 'Advocates' had positive attitudes towards PROMs and confirmed that the information promoted a self-reflective process. 'Converts' were uncertain about the value of PROMs, which reduced their inclination to use the data. 'Sceptics' had negative attitudes towards PROMs and claimed that the information had no impact on their behaviour. The conceptual, methodological and practical factors were linked to the typology.ConclusionSurgeons had mixed opinions on the value of peer benchmarked PROMs data. Many appreciated the feedback as it reassured them that their practice was similar to their peers. However, PROMs information alone was considered insufficient to help identify opportunities for quality improvements. The reasons for the observed reluctance of participants to embrace PROMs can be categorised into conceptual, methodological, and practical factors. Policy makers and researchers need to increase professionals' awareness of the numerous purposes and benefits of using PROMs, challenge the current methods to measure performance using PROMs, and reduce the burden of data collection and information dissemination on routine practice.

Project description:BackgroundThe outlook for patients with metastatic synovial sarcoma (mSS) is poor. Better understanding of patient experience in this setting, beyond clinical measures, may guide improvements in management. Validated patient-reported outcome (PRO) instruments specific to many types of cancer exist, but for rare cancers this is often not the case.MethodsThis study aimed to characterize patient experiences of symptoms and impacts of mSS and evaluate the content validity and relevance of the novel European Organization for Research and Treatment of Cancer Item Library 31 (EORTC IL31) Disease Symptoms PRO tool assessing synovial sarcoma symptoms. This tool comprises items from preexisting, validated cancer-specific PRO instruments from the EORTC Item Library. It was developed as an mSS-specific add-on to the EORTC Quality of Life Questionnaire Core 30 (QLQ-C30), which evaluates general cancer and treatment-related symptoms and functioning. This was a non-interventional, qualitative interview study involving semi-structured, concept elicitation (CE) and cognitive debriefing (CD) telephone interviews in adults with mSS. CE explored symptoms and their impact on functioning and quality of life; CD assessed participant understanding and relevance of the PRO tools.ResultsAmong the 8 participants, the most common disease-related symptoms reported during CE were fatigue and pain, while shortness of breath was one of the most bothersome. The greatest negative impacts of mSS occurred in domains of physical functioning and sleep. Key treatment priorities for patients were to improve disrupted sleep and ability to undertake strenuous activities.ConclusionsThe interviews showed that, when used together, the EORTC IL31 and EORTC QLQ-C30 covered symptoms and impacts of most relevance and importance to patients with mSS, with no notable gaps and good conceptual coverage. This study therefore supports the content validity of 2 tools in mSS, advocating their use in clinical trials to assess treatment impact on PRO measures of importance to these patients.

Project description:IntroductionWhen thyroidectomy is performed under optimal conditions within a milieu of sound anatomical and physiological knowledge combined with meticulous surgical skills, complications are minimal. However, thyroidectomy can be difficult, and its complications can be life-threatening. The factors that predict difficult thyroidectomy can be patient-, thyroid-, or surgeon-related, and we aimed to study these three factors. .Materials and methodsThis prospective study was performed in a tertiary care center between September 2016 and March 2017. We developed and validated modified thyroidectomy difficulty scale (TDS), with 11 items. Preoperatively, height, weight, neck length, and other parameters were recorded. Postoperatively, the modified TDS form was filled out by the surgeon and assistant, blinded to each other's responses. The minimum score was 19 and maximum was 54. The surgeon's baseline pulse rate was monitored throughout the procedure using a pulse oximeter probe that was On-The-Go (OTG) compatible. The probe was placed over the ear lobule/pinna of the surgeon and connected to an Android phone that was comfortably placed in the surgeon's pocket inside the gown. An application USB SPO2, was used in recording the pulse rate.ResultsA total of 52 patients undergoing hemi- or total thyroidectomy were included in this study. All had benign cytology on fine needle aspiration cytology (colloid, 71.42%). A total of 104 modified TDS questionnaires filled by the operating surgeon and assistant were analyzed. The pulse rate of the operating surgeon, as measured by the novel pulse oximeter, was recorded in 52 surgeries. The minimum score was 20, maximum score was 35.50, and mean score was 26.85 ± 2.80. There was an interobserver agreement in most domains of the modified TDS except mobility. The surgeon was found to have the maximum heart rate when performing recurrent laryngeal nerve (RLN) dissection in 38 patients (73.07%).DiscussionWe found that majority of the trainees found thyroidectomy to be a vigorously intense activity. Thyroidectomy is a demanding surgery, which requires meticulous identification and dissection of the RLN and parathyroid glands for optimum outcome.

Dataset Information

Patient-Reported Dysphagia After Thyroidectomy: A Qualitative Study.

Publications

Patient-Reported Dysphagia After Thyroidectomy: A Qualitative Study.

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