scholarly journals On the receiving end: have patient perceptions of the side-effects of cancer chemotherapy changed since the twentieth century?

2022 ◽  
Author(s):  
Janette L. Vardy ◽  
Andre Liew ◽  
Anne Warby ◽  
Alexander Elder ◽  
Itay Keshet ◽  
...  
Keyword(s):  
Physical Symptoms ◽  
Patient Reported Outcome ◽  
Patient Perceptions ◽  
Curative Intent ◽  
Cross Sectional ◽  
Patient Demographics ◽  
General Weakness ◽  
Patient Reported ◽  
The Future ◽  
Chemotherapy Patients

Abstract Background Studies in 1983 and 1993 identified and ranked symptoms experienced by cancer patients receiving chemotherapy. We repeated the studies to obtain updated information on patient perceptions of chemotherapy-associated symptoms. Patients and methods A cross-sectional interview and patient-reported outcome questionnaires were administered to out-patients receiving chemotherapy. Patients selected from 124 cards to identify and rank the severity of physical and non-physical symptoms they had experienced and attributed to chemotherapy (primary endpoint). The patient’s medical oncologist and primary chemotherapy nurse were invited to rank the five symptoms they believed the patient would rank as their most severe. We analysed the association of symptoms and their severity with patient demographics, chemotherapy regimen, and patient-reported outcomes. Results were compared to the earlier studies. Results Overall, 302 patients completed the interview: median age 58 years (range 17–85); 56% female; main tumour types colorectal 81 (27%), breast 67 (22%), lung 49 (16%); 45% treated with curative intent. Most common symptoms (reported by >50%) were: alopecia, general weakness, effects on family/partner, loss of taste, nausea, fatigue, difficulty sleeping, effects on work/home duties, and having to put life on hold. The most severe symptoms (ranked by >15% in top five) were: concern about effects on family/partner, nausea, fear of the future, fatigue, not knowing what will happen, putting my life on hold, and general weakness. Perceptions of doctors and nurses of patients’ symptom severity closely matched patients’ rankings. Conclusions Compared to earlier studies, there was an increase in non-physical concerns such as effects on family and future, and a decrease in physical symptoms, particularly vomiting, but nausea, fatigue and general weakness remained bothersome. Highlights • Symptoms related to chemotherapy have changed over time, likely due to less toxic regimens and improvements in supportive care. • Effects on family/partner, fear of the future, not knowing what will happen, and “life on hold” were major issues for patients. • Vomiting has decreased but nausea, fatigue and general weakness remain common symptoms for chemotherapy patients.

scholarly journals Development of a patient-reported outcome measure for neck pain in military aircrew: qualitative interviews to inform design and content

BMJ Open ◽  
2021 ◽  
Vol 11 (2) ◽  
pp. e039488
Author(s):  
Anna Dowling ◽  
Ellen Slungaard ◽  
Nicola R Heneghan
Keyword(s):  
Neck Pain ◽  
Outcome Measure ◽  
Physical Symptoms ◽  
Patient Reported Outcome ◽  
Direct Access ◽  
Specific Patient ◽  
Concept Elicitation ◽  
Patient Reported Outcome Measure ◽  
Patient Reported ◽  
The Impact

IntroductionThe prevalence of flight-related neck pain is 70% in UK fast jet pilots; much higher than the general population. The Aircrew Conditioning Programme and direct access physiotherapy exist to minimise the impact on military capability, but a population specific patient-reported outcome measure (PROM) is required to investigate the effectiveness of these. We aimed to explore the experiences of flight-related neck pain to inform the content validity and development of a population specific PROM.MethodsQualitative semistructured interviews combining phenomenological and grounded theory methods, reported using Consolidated criteria for Reporting Qualitative research guidelines. A purposive sample of 10 fast jet pilots with neck pain was recruited. Concept elicitation interviews were audio recorded, transcribed verbatim along with field notes. Data analysis involved subject and methodological expertise used a concept elicitation approach.ResultsParticipants included 10 male fast jet pilots, age 34.7 years. Identified themes included: (1) physical symptoms associated with flying activities; (2) occupational effects revealed modifications of flying, or ‘suboptimal’ performance owing to neck pain; (3) psychological effects revealed feelings or worry and (4) social and activity effects showed impact on out of work time.ConclusionPopulation-specific occupational, psychological and social factors should be considered alongside physical symptoms when managing neck pain in military aircrew. Findings support the development of a PROM specifically designed for military aircrew with neck pain.

scholarly journals The Correlation of Communication Effectiveness and Patient Satisfaction

2021 ◽  
Vol 8 ◽  
pp. 237437352199883
Author(s):  
Yvonne Versluijs ◽  
Maartje Lemmers ◽  
Laura E. Brown ◽  
Amanda I. Gonzalez ◽  
Joost T. P. Kortlever ◽  
...  
Keyword(s):  
Pain Intensity ◽  
Patient Reported Outcome Measures ◽  
Cross Sectional Study ◽  
Patient Reported Outcome ◽  
Communication Effectiveness ◽  
Cross Sectional ◽  
Patient Reported ◽  
Ceiling Effects ◽  
As Relationship ◽  
Current Experience

This study assessed the correlation of 9 questions addressing communication effectiveness (the Communication Effectiveness Questionnaire [CEQ]) with other patient-reported experience measures (PREMs; satisfaction, perceived empathy) as well as patient-reported outcome measures (PROMs; pain intensity, activity tolerance) in patients with musculoskeletal illness or injury. In a cross-sectional study, 210 patients visiting an orthopedic surgeon completed the CEQ and measures of satisfaction with the visit, perceived empathy, pain intensity, and activity tolerance. We evaluated correlations between CEQ and other PREMs and CEQ and PROMs. We measured ceiling effects of the PREMs. Communication effectiveness correlated moderately with other PREMs such as satisfaction (ρ = 0.54; P < .001) and perceived empathy (ρ = 0.54; P < .001). Communication effectiveness did not correlate with PROMs: pain intensity (ρ = −0.01; P = .93) and activity tolerance (ρ = −0.05; P = .44). All of the experience measures have high ceiling effects: perceived empathy 37%, satisfaction 80%, and CEQ 46%. The observation of notable correlations of various PREMs, combined with their high ceiling effects, direct us to identify a likely common statistical construct (which we hypothesize as “relationship”) accounting for variation in PREMs, and then develop a PREM which measures that construct in a manner that results in a Gaussian distribution of scores. At least within the limitations of current experience measures, there seems to be no association between illness (PROMs) and experience (PREMs).

scholarly journals Patient-reported outcome measures in hemodialysis patients: results of the first multicenter cross-sectional ePROMs study in France

2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Abdallah Guerraoui ◽  
Mathilde Prezelin-Reydit ◽  
Anne Kolko ◽  
Marie Lino-Daniel ◽  
Charlotte Dumas de Roque ◽  
...  
Keyword(s):  
Outcome Measures ◽  
Recovery Time ◽  
Patient Characteristics ◽  
Patient Reported Outcome Measures ◽  
Cross Sectional Study ◽  
Patient Reported Outcome ◽  
Dialysis Session ◽  
Cross Sectional ◽  
Cardiovascular Comorbidities ◽  
Patient Reported

Abstract Background Kidney failure with replacement therapy and hemodialysis are associated with a decrease in quality of life (QOL). Self-reported QOL symptoms are not always prioritized by the medical team, potentially leading to conflicting priorities with patients. Electronic patient-reported outcome measures (ePROMs) allow physicians to better identify these symptoms. The objective was to describe the prevalence of symptoms self-reported by hemodialysis (HD) patients. Methods A multicenter cross-sectional study was conducted in three HD centers. Patients were included if they were 18 years old or over treated with HD for at least 3 months in a center. Data were collected by the patient via a self-administered ePROMs questionnaire. Data included patient characteristics, post-dialysis fatigue and intensity, recovery time after a session, perceived stress, impaired sleep the day before the dialysis session, current state of health and the change from the past year. A multivariate analysis was conducted to identify relations between symptoms. Results In total, we included 173 patients with a mean age of 66.2 years, a mean ± SD hemodialysis duration of 48.9 ± 58.02 months. The prevalence of fatigue was 72%. 66% had a high level of stress (level B or C). Recovery time was more than 6 h after a HD session for 25% of patients and 78% declared they had a better or unchanged health status than the previous year. Sleep disturbance was associated with cardiovascular comorbidities (OR 5.08 [95% CI, 1.56 to 16.59], p = 0.007). Conclusions Fatigue and stress were the main symptoms reported by HD patients. The patient’s care teams should better consider these symptoms.

scholarly journals Digital patient-reported outcome measures (PROMs) for remote monitoring of patients on cancer treatment: a cross-sectional questionnaire feasibility study (Preprint)

2020 ◽  
Author(s):  
Mayuran Ananth Sivanandan ◽  
Catherine Sharma ◽  
Pippa Bullard ◽  
Judith Christian
Keyword(s):  
Cancer Treatment ◽  
Outcome Measures ◽  
Remote Monitoring ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Severe Toxicity ◽  
Cross Sectional ◽  
Treatment Pathways ◽  
Face To Face ◽  
Patient Reported

BACKGROUND Oncology has increasing outpatient activity related to increased cancer incidence, better survival rates and more treatments. Innovative technological solutions could help deal with this increasing demand and digital patient-reported outcome measures (PROMs) to identify those patients that need a face-to-face (FTF) appointment is one potential approach. OBJECTIVE Our study aimed to assess the feasibility of digital PROM questionnaires to enable remote symptom monitoring for patients on cancer treatment and their ability to determine the requirement for a FTF appointment. METHODS This study was performed at a tertiary oncology centre between December 2018 and February 2019. Target clinics covered both systemic therapy and radiotherapy cohorts. The Common Terminology Criteria for Adverse Events (CTCAE) helped form the basis for acute toxicity questionnaires which were adapted into patient-friendly language. Treatment-specific digital PROM questionnaires were answered by patients and their clinicians alongside face-to-face appointments. Patients and clinicians did not see each other’s results, which were not used for clinical decisions. Agreement between patients and clinicians was assessed through descriptive statistics. Patient and staff feedback was also obtained. RESULTS 90 patients took part in the study across 10 different treatment pathways. By comparing paired patient and clinician responses, the sensitivity of the patient-completed questionnaires in correctly determining the need for FTF review was 93.6% and no patients with severe toxicity would have been missed with the questionnaires. Digital PROMs revealed 28.9% of participating patients did not need FTF review based on their symptoms. Certain oncological treatment pathways, such as immunotherapy, were found to have a larger proportion of patients with minimal symptoms compared to others, such as conventional chemotherapy. Patient and staff feedback showed high approval with digital PROMs and their potential for use in remote monitoring. CONCLUSIONS Digital PROM questionnaires can feasibly determine the need for FTF review in ‘on treatment’ oncology clinics. Their use with specific treatments could safely reduce the requirement for FTF care and future work should evaluate their application in the remote monitoring of patients.

scholarly journals DELIVERY OF COMMON KNEE PATIENT-REPORTED OUTCOME INSTRUMENTS BY AUTOMATED MOBILE PHONE TEXT MESSAGING IN PEDIATRIC SPORTS MEDICINE

2019 ◽  
Vol 7 (3_suppl) ◽  
pp. 2325967119S0004
Author(s):  
Xochitl Mellor ◽  
Matthew J. Buczek ◽  
J. Todd Lawrence ◽  
Theodore J. Ganley ◽  
Alexander J. Adams ◽  
...  
Keyword(s):  
High School Students ◽  
Mobile Phone ◽  
Sports Medicine ◽  
Text Messaging ◽  
Text Message ◽  
Patient Reported Outcome ◽  
Message Delivery ◽  
School Students ◽  
Patient Demographics ◽  
Patient Reported

Background: Patient-reported outcome (PRO) instruments measure a patient’s health status in a variety of domains, including physical, mental and social well-being. The delivery of such instruments has become an integral part of healthcare, commonly employed to assess treatment efficacy and outcomes in sports medicine. With the proliferation of mobile phones, administration of PROs across patient-friendly platforms (e.g. apps, text messaging) may increase completion rates, particularly among younger patients. The purpose of this study was to validate the collection of common knee PROs with text messaging in sports medicine, by correlating text messaging responses with traditional paper delivery in adolescents and young adults. Methods: Patients presenting to a hospital-based pediatric orthopaedic sports medicine clinic with a knee injury were enrolled in this prospective investigation. Patients were excluded if they were undergoing a same-day office procedure, underwent surgery within the previous 90 days, and/or had no access to a mobile phone. Paper versions of the Pediatric International Knee Documentation Committee (Pedi-IKDC) Subjective Knee Evaluation Form and the Pediatric Functional Activity Brief Scale (Pedi-Fab Scale) questionnaires were completed during the patients’ initial clinic visit. Over the next 72 hours, the patients subsequently completed the mobile phone portion of the study outside of the clinic (Figure 1), which included text message delivery of the Pedi-IKDC and Pedi-Fab Scale, assigned in a random order. Correlations between paper and text message delivery of the two PROs were assessed. Secondary analyses were conducted to examine overall completion time and associations between patient demographics and text compliance. Results: Of the 91 patients (Age M=16.0 ±2.0 years; 48% female) initially enrolled in the study, 55 (60.4%) completed the text Pedi-Fab Scale, 48 (52.7%) completed the text Pedi-IKDC, and 39 (42.9%) completed both PROs. Among the evaluable sample, the intraclass correlation coefficient (ICC) between the paper and mobile phone delivery of the Pedi-Fabs was 0.95 (95% CI, 0.91-0.97). The ICC between the paper and mobile phone delivery of the Pedi-IKDC was 0.96 (95% CI, 0.93-0.98). Average Pedi-Fab scores on paper (M=12.7) and mobile phone (M=12.3) were not significantly different (p=0.52). Similarly, average Pedi-IKDC scores on paper (M=68.8) and mobile phone (M=67.7) were not significantly different (p=0.41). A Bland-Altman plot and linear regression revealed there was no proportional bias between the mean and difference for the Pedi-Fab scores (p=0.55) and Pedi-IKDC scores (p=0.56). The average completion time for the text delivered Pedi-Fab and Pedi-IKDC were 102±224 minutes and 159±155 minutes, respectively. For Pedi-Fab, there were no patient demographics that were significantly associated with text completion. However, high school students (p=0.025), female sex (p=0.036), and race (p=0.002), were significantly associated with the text completion of Pedi-IKDC. In addition, order of the delivery of the questionnaires and paper scores were not associated with text completion for either survey. Conclusion: Text message delivery using mobile phones permits valid assessment of Pedi-IKDC and Pedi-Fabs scores in this prospective observational study. Questionnaire delivery by automated text messaging allows asynchronous response and may increase compliance among high school students while also reducing the labor cost of collecting PROs.

Defining the Minimal Clinically Important Difference for Patients With Vestibular Schwannoma: Are all Quality-of-Life Scores Significant?

Neurosurgery ◽  
2018 ◽  
Vol 85 (6) ◽  
pp. 779-785 ◽  
Author(s):  
Panagiotis Kerezoudis ◽  
Kathleen J Yost ◽  
Nicole M Tombers ◽  
Maria Peris Celda ◽  
Matthew L Carlson ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Acoustic Neuroma ◽  
Minimal Clinically Important Difference ◽  
Patient Reported Outcome ◽  
Cross Sectional ◽  
Prospective Data ◽  
Clinically Important Difference ◽  
Patient Reported ◽  
Spearman’S Correlation

Abstract BACKGROUND The diagnosis of vestibular schwannomas (VS) is associated with reduced patient quality of life (QOL). Minimal clinically important difference (MCID) was introduced as the lowest improvement in a patient-reported outcome (PRO) score discerned as significant by the patient. We formerly presented an MCID for the Penn Acoustic Neuroma QOL (PANQOL) battery based on cross-sectional data from 2 tertiary referral centers. OBJECTIVE To validate the PANQOL MCID values using prospective data. METHODS A prospective registry capturing QOL was queried, comprising patients treated at the authors’ institution and Acoustic Neuroma Association members. Anchor- and distribution-based techniques were utilized to determine the MCID for domain and total scores. We only included anchors with Spearman's correlation coefficient larger than 0.3 in the MCID threshold calculations. Most domains had multiple anchors with which to estimate the MCID. RESULTS A total of 1254 patients (mean age: 57.4 yr, 65% females) were analyzed. Anchor-based methods produced a span of MCID values (median, 25th-75th percentile) for each PANQOL domain and the total score: hearing (13.1, 13-16 points), balance (14, 14-19 points), pain (21, 20-28 points), face (25, 16-36 points), energy (16, 15-18 points), anxiety (16 [1 estimate]), general (13 [1 estimate]), and total (12.5, 10-15 points). CONCLUSION Current findings corroborate our formerly shared experience using multi-institutional, cross-sectional information. These MCID thresholds can serve as a pertinent outcome when deciphering the clinical magnitude of VS QOL endpoints in cross-sectional and longitudinal studies.

Sign in / Sign up

Export Citation Format

Share Document