scholarly journals Psychosocial and Quality of Life in Women Receiving the 21-Gene Recurrence Score Assay: The Impact of Decision Style in Women with Intermediate RS

2012 ◽  
Vol 2012 ◽  
pp. 1-8 ◽  
Author(s):  
Nadiyah Sulayman ◽  
Elizabeth Spellman ◽  
Kristi D. Graves ◽  
Beth N. Peshkin ◽  
Claudine Isaacs ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Decision Making ◽  
Early Stage ◽  
Recurrence Score ◽  
Breast Cancer Patients ◽  
Decision Style ◽  
Patient Reported ◽  
The Impact ◽  
Test Result

Multigene assays such as the 21-gene recurrence score (RS) quantify risk for recurrence and potential benefit from chemotherapy in early-stage, ER+ breast cancers. Few studies have assessed the impact of testing on patient-reported outcomes such as cancer-related distress or quality of life. The few studies that have assessed these outcomes do not consider potential modifiers, such as the patients’ level of involvement in the treatment decision-making process. In the current study, 81 breast cancer patients who received the RS assay completed cross-sectional surveys. We used linear multiple regression to assess whether test result, decision-making role (passive versus shared/active), and their interaction contributed to current levels of distress, quality of life, and decisional conflict. There were no associations between these variables and test result or decision-making role. However, women who received an intermediate RS and took a passive role in their care reported higher-cancer-related distress and cancer worry and lower quality of life than those who took a shared or active role. These data should be confirmed in prospective samples, as these poorer outcomes could be amenable to intervention.

scholarly journals Quality of Life Assessment After Conserving Breast Surgery and Intraoperative Radiotherapy (IORT) in Breast Cancer Patients Using the BREAST-Q Questionnaire

2020 ◽  
pp. 183-188
Author(s):  
Marina Caldana ◽  
Davide Lombardi ◽  
Silvia Urbani ◽  
Francesca Pellini ◽  
Sara Mirandola ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Quality Of Life ◽  
Breast Surgery ◽  
Early Stage ◽  
Univariate Analysis ◽  
Intraoperative Radiotherapy ◽  
Life Assessment ◽  
Breast Cancer Patients ◽  
Patient Reported

Background: In women undergoing breast surgery, Measurement of Patient Related Outcome Measures (PROMs) is important for improving the process of care, focusing on the patient's perspective. BREASTQ is a validated patient-reported outcome measure used increasingly in aesthetic and recostructive surgery. Only recently a breast conserving therapy module (BREASTQ-BCT) has been available. The aim of this study was to assess patient satisfaction and quality of life using BREAST-Q questionnaire in patients undergoing breast conserving surgery (BCS) plus IORT.Methods: Women undergoing BCS plus IORT for an early-stage breast cancer for at least a year were invited by telephone to partecipate. We scheduled dedicated outpatient visits to our center. The medical interviewer collected medical history information and administered the BREASTQ-BCT in paper format. Data were inserted in a de-identified database. Univariate regression analysis was used to identify clinicopathological variables associated with "satisfaction with breast" domain score.Results: Overall, 38 women completed the questionnaire. The domains of the questionnaire that obtained the lowest scores were ‘satisfaction with IORT information’ and ‘satisfaction with breasts’ (median score 59, IQR 55-73 and 51-69.5). Weight of specimen and vascular invasion were risk factors for lower ‘Satisfaction with breasts’ at univariate analysis. There was a moderate-strong correlation between 'satisfaction with the breasts' and 'psychosocial wellbeing' and 'Sexual wellbeing'.Conclusions: In this retrospective study, without a pre-operative questionnaire, changes in individuals’ satisfaction and quality of life could not be identified. A prospective study comparing BCS plus external RT group and BCS plus IORT group could be informative.

scholarly journals The Impact of Payer and Reimbursement Authorities Evidence Requirements on Healthcare Solution Design for Muscular Dystrophies

2020 ◽  
Author(s):  
Maximilian Lebmeier ◽  
Fleur Chandler ◽  
Josie Godfrey ◽  
Jonathan Dando
Keyword(s):  
Quality Of Life ◽  
Decision Making ◽  
Care Pathway ◽  
Standards Of Care ◽  
Optimal Care ◽  
Healthcare Decision Making ◽  
Key Stakeholders ◽  
Patient Reported ◽  
The Impact

For rare diseases that start early and are slowly degenerative, despite the desire to create solutions that benefit the patient, healthcare system realities can be prohibitive to generate an affordable and effective solution. The optimal care pathway for muscular dystrophy, similar to all degenerative diseases, would be a rapid and accurate diagnosis, pathophysiological confirmation and application of therapeutics that slowly replaces damaged tissue with healthy tissue, supported by adjuvant solutions that stimulate the tissue to repair and reduce inflammation and fibrosis. This would increase the lifespan and quality of life in an affordable way. For all diseases, two key stakeholders, the paying entity and the patient, fundamentally define whether revenue can be generated. Healthcare decision-making commissioners who agree to pay for the product and patient-reported outcomes jointly inform whether the intervention increases the quality of life related to existing standards of care and, therefore, if it should be paid for. This chapter explains why this has not yet happened and efforts initiated to correct this and addresses how the components and data used in this decision-making process could be updated, adapted and integrated into every stage of the development of solutions and how organisational innovation may enable the field.

Measuring and understanding quality of survival in oncology.

2016 ◽  
Vol 34 (3_suppl) ◽  
pp. e291-e291
Author(s):  
Stacie Hudgens ◽  
Anna Forsythe ◽  
Andrew Lloyd ◽  
Pablo Lapuerta
Keyword(s):  
Quality Of Life ◽  
Clinical Decision Making ◽  
Early Stage ◽  
Burden Of Illness ◽  
Symptom Improvement ◽  
Blood Levels ◽  
Early Stage Disease ◽  
Patient Reported ◽  
The Impact

e291 Background: Health status, burden of illness, and quality of life (QOL) are considered crucial for clinical decision making in cancer. More specifically, quality of survival (QOS) in patients with cancer must be paramount in treatment considerations from early stage disease to palliative care. Measuring QOL provides information beyond biomedical outcomes, offers a unique understanding from the patient's perspective, and has demonstrated influence over study conclusions where differences in QOL are more often detected in studies comparing intervention to no intervention rather than comparative studies with systemic therapies. Methods: This panel presentation is focused on the crossfunctional perspectives of critical research areas for understanding QOS in oncology. As such, this presentation seeks to address the need for patient-focused research in oncology including: 1) the importance of the patient's voice in early and metastatic disease, 2) what endpoints should we consider in oncology trials for understanding the impact on patients, 3) modeling time to patient reported decline as a critical endpoint in understanding survival, 4) quality of life as a story rather than a statistic, 5) understanding health states for response and progression. Results: The authors of this panel seek to present real world examples for each of the above topics as well as introduce methodologies for improving QOS value messaging in oncology. Conclusions: In cancer studies, the primary response is measured as survival benefit with the ability to measure biomarkers such as tumor response, blood levels, etc. However, measureable endpoints in oncology from patient report contribute to the understanding of symptom improvement or decline (change over the course of treatment), change in function (e.g., physical functioning), side effects (treatment toxicity; e.g., patient reported potential with the PRO common terminology criteria for adverse events), economic aspects, interaction between biomarkers of progression or response and patient-reported symptoms, function, and QOL should be carefully estimated to fully understand treatment efficacy and safety, and inform patients of duration and cycle of toxicity onset; disease symptoms and changes.

Decision Support for Patients With Early-Stage Breast Cancer: Effects of an Interactive Breast Cancer CDROM on Treatment Decision, Satisfaction, and Quality of Life

2001 ◽  
Vol 19 (6) ◽  
pp. 1676-1687 ◽  
Author(s):  
Sjaak Molenaar ◽  
Mirjam AG Sprangers ◽  
Emiel J. Th. Rutgers ◽  
Ernest JT Luiten ◽  
Jan Mulder ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Quality Of Life ◽  
Decision Making ◽  
Early Stage ◽  
Treatment Decision ◽  
Early Stage Breast Cancer ◽  
Specific Information ◽  
Breast Cancer Patients ◽  
Decision Satisfaction

PURPOSE: To investigate the effects of the Interactive Breast Cancer CDROM as a decision aid for breast cancer patients with a choice between breast conserving therapy (BCT) and mastectomy (MT). PATIENTS AND METHODS: Consecutive patients with stage I and II breast cancer were enrolled. A quasi-experimental, longitudinal, and pretest/posttest design was used. Follow-up was scheduled 3 and 9 months after discharge from the hospital. Control patients (n = 88) received standard care (oral information and brochures). The CDROM was provided to patients in the experimental condition (n = 92) as a supplement to standard procedures. Outcome variables were treatment decision, satisfaction, and quality of life (QoL). RESULTS: No effect on treatment decision was found. CDROM patients expressed more general satisfaction with information at 3 and 9 months (95% confidence interval for the difference (d) between the means (d: 4.1 to 12.5 and 5.7 to 14.2 respectively). CDROM patients were also more satisfied with their treatment decision at 3 and at 9 months (d: 0.1 to 0.4; 0.2 to 0.5). Moreover, at 9 months, CDROM patients were more satisfied with breast cancer–specific information (d: 0.9 to 16.5), the decision-making process (d: 0.1 to 0.4), and communication (d: 0.2 to 11.0). At 3 and 9 months, a positive effect was found on general health (d: 0.2 to 14.5 and 0.3 to 15.0). Moreover, at 9 months, CDROM patients reported better physical functioning (d: 5.1 to 19.8), less pain (d: -17.9 to -4.5), and fewer arm symptoms (d: -14.1 to -0.5). CONCLUSION: The Interactive Breast Cancer CDROM improved decision making in patients with early-stage breast cancer with a choice between BCT and MT, as evaluated in terms of patients’ satisfaction and QoL.

scholarly journals The use of multiple sclerosis condition-specific measures to inform health policy decision-making: mapping from the MSWS-12 to the EQ-5D

2011 ◽  
Vol 18 (6) ◽  
pp. 853-861 ◽  
Author(s):  
A Hawton ◽  
C Green ◽  
CJ Telford ◽  
DE Wright ◽  
JP Zajicek
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Decision Making ◽  
Health Policy ◽  
Policy Decision ◽  
Health State ◽  
Patient Reported ◽  
Policy Decision Making ◽  
The Impact

Background: Walking impairment has a major influence on the quality of life of people with multiple sclerosis (MS). The Multiple Sclerosis Walking Scale (MSWS-12) assesses the impact of MS on walking ability from the patient’s perspective, but in its current form, is not amenable for use in many policy decision-making settings. Objectives: Statistical ‘mapping’ methods were used to convert MSWS-12 scores to EQ-5D health state values. Methods: The relationship between the measures was estimated using cohort data from people with MS in South West England. Regression analyses were conducted, estimation errors assessed, and predictive performance of the best models tested using longitudinal data. Results: Model performance was in line with that of other mapping studies, with the best-performing models being an ordinary least squares (OLS) model using MSWS-12 item scores, and an OLS model using the total MSWS-12 score and its squared term. Conclusions: A process has been described whereby data from a patient-reported outcome measure (MSWS-12) can be converted to (EQ-5D) health state values. These values may be used to consider the health-related quality of life of people with MS, to estimate quality adjusted life-years for use in effectiveness and cost-effectiveness analyses, and to inform health policy decisions.

The effect of surgery in tenosynovial giant cell tumours as measured by patient-reported outcomes on quality of life and joint function

2019 ◽  
Vol 101-B (3) ◽  
pp. 272-280 ◽  
Author(s):  
F. G. M. Verspoor ◽  
M. J. L. Mastboom ◽  
G. Hannink ◽  
W. T. A. van der Graaf ◽  
M. A. J. van de Sande ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Giant Cell ◽  
Diffuse Type ◽  
Joint Function ◽  
Population Means ◽  
Sf 36 ◽  
Patient Reported ◽  
The Impact

Aims The aim of this study was to evaluate health-related quality of life (HRQoL) and joint function in tenosynovial giant cell tumour (TGCT) patients before and after surgical treatment. Patients and Methods This prospective cohort study run in two Dutch referral centres assessed patient-reported outcome measures (PROMs; 36-Item Short-Form Health Survey (SF-36), visual analogue scale (VAS) for pain, and Western Ontario and McMaster Universities Osteoarthritis Index (WOMAC)) in 359 consecutive patients with localized- and diffuse-type TGCT of large joints. Patients with recurrent disease (n = 121) and a wait-and-see policy (n = 32) were excluded. Collected data were analyzed at specified time intervals preoperatively (baseline) and/or postoperatively up to five years. Results A total of 206 TGCT patients, 108 localized- and 98 diffuse-type, were analyzed. Median age at diagnosis of localized- and diffuse-type was 41 years (interquartile range (IQR) 29 to 49) and 37 years (IQR 27 to 47), respectively. SF-36 analyses showed statistically significant and clinically relevant deteriorated preoperative and immediate postoperative scores compared with general Dutch population means, depending on subscale and TGCT subtype. After three to six months of follow-up, these scores improved to general population means and continued to be fairly stable over the following years. VAS scores, for both subtypes, showed no statistically significant or clinically relevant differences pre- or postoperatively. In diffuse-type patients, the improvement in median WOMAC score was statistically significant and clinically relevant preoperatively versus six to 24 months postoperatively, and remained up to five years’ follow-up. Conclusion Patients with TGCT report a better HRQoL and joint function after surgery. Pain scores, which vary hugely between patients and in patients over time, did not improve. A disease-specific PROM would help to decipher the impact of TGCT on patients’ daily life and functioning in more detail. Cite this article: Bone Joint J 2019;101-B:272–280.

Patients With a History of Oronasal Fistula Repair Exhibit Lower Oral Health Measured With Patient-Centric Outcomes Measures

2020 ◽  
pp. 105566562098133
Author(s):  
Alyssa Fritz ◽  
Diana S. Jodeh ◽  
Fatima Qamar ◽  
James J. Cray ◽  
S. Alex Rottgers
Keyword(s):  
Quality Of Life ◽  
Oral Health ◽  
Cleft Palate ◽  
Fistula Repair ◽  
Old Patients ◽  
Oronasal Fistula ◽  
Patient Reported ◽  
History Of ◽  
The Impact

Introduction: Oronasal fistulae following palatoplasty may affect patients’ quality of life by impacting their ability to eat, speak, and maintain oral hygiene. We aimed to quantify the impact of previous oronasal fistula repair on patients’ quality of life using patient-reported outcome psychometric tools. Methods: A cross-sectional study of 8- to 9-year-old patients with cleft palate and/or lip was completed. Patients who had a cleft team clinic between September 2018 and August 2019 were recruited. Participants were divided into 2 groups (no fistula, prior fistula repair). Differences in the individual CLEFT-Q and Child Oral Health Impact Profile-Short Form 19 (COHIP-SF 19) Oral Health scores between the 2 groups were evaluated using a multivariate analysis controlling for Veau classification and syndromic diagnosis. Results: Sixty patients with a history of cleft palate were included. Forty-two (70%) patients had an associated cleft lip. Thirty-two (53.3%) patients had no history of fistula and 28 (46.7%) patients had undergone a fistula repair. CLEFT-Q Dental, Jaw, and Speech Function were all higher in patients without a history of a fistula repair; however, none of these differences were statistically significant. The COHIP-SF 19 Oral Health score demonstrated a significantly lower score in the fistula group, indicating poorer oral health ( P = .05). Conclusions: One would expect that successful repair of a fistula would result in improved function and patient satisfaction, but the consistent trend toward lower CLEFT-Q scores and significantly increased COHIP-SF 19 Oral Health scores in our study group suggests that residual effects linger and that the morbidity of a fistula may not be completely treated with a secondary correction.

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.

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