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Introduction: A breast cancer diagnosis may result in disabling effects which may persist after treatment. The aim of this study was to identify patient factors that are associated with increased cancer worry, fatigue, and impact on work. Methods: Women with a history of breast cancer, aged ≥18 years, and English-speaking were recruited through the Love Research Army between October and November 2019. Participants completed demographic and clinical questions alongside the BREAST-Q Cancer Worry, Fatigue, and Impact on Work scales. Univariable and multivariable regression analyses were used to identify participant characteristics associated with each scale. Results: Cancer Worry, Fatigue, and Impact on Work scales were completed by n = 1680, n = 1037, and n = 873 participants, respectively. Most participants were older than 50 (n = 1,470, 87.5%), married (n = 1229, 73.2%), white (n = 1557, 92.7%), and had undergone surgery for cancer treatment (n = 1,472, 87.6%). Increased Cancer Worry was significantly associated (P < .04) with younger age, less time since diagnosis, pain related to cancer/treatment, recurrence, prior chemotherapy, and ongoing breast edema. Increased Fatigue was significantly associated (P < .01) with elevated BMI, less time since diagnosis, ethnicity, employment status, recurrence, prior chemotherapy, ongoing pain, and difficulty sleeping secondary to treatment. Decreased Impact on Work scores was significantly associated (P < .04) with chemotherapy administration, shorter time since diagnosis, employment, fatigue related to treatment, breast edema, and ongoing pain. Conclusion: This study reveals patient characteristics associated with increased cancer worry, fatigue, and a negative impact on work following a breast cancer diagnosis. These findings can inform clinical and research initiatives to better support patients through treatment and survivorship.
Introduction: Un diagnostic de cancer du sein peut avoir des effets dévastateurs qui persistent après le traitement. Le but de cette étude était d'identifier les facteurs liés au patient qui sont associés à une augmentation de l'inquiétude face au cancer, à la fatigue et aux répercussions sur l'activité professionnelle. Méthodes: Des femmes ayant eu un cancer du sein, âgées ≥ 18 ans, anglophones, ont été recrutées par le biais du programme Love Research Army entre octobre et novembre 2019. Les participantes ont rempli des questionnaires démographiques et cliniques, ainsi que les échelles BREAST-Q Cancer Worry (inquiétude), Fatigue et impact sur le travail. Des analyses en régression uni- et multifactorielles ont été utilisées pour identifier les caractéristiques des participantes associées à chaque échelle. Résultats: Les échelles Cancer Worry, Fatigue and Impact on Work ont été remplies par, respectivement, n = 1680, n = 1037 et n = 873 participantes. La plupart des participantes étaient âgées de plus de 50 ans (n = 1470, 87,5%), mariées (n = 1229, 73,2%), blanches (n = 1557, 92,7%) et avaient subi une chirurgie à visée thérapeutique du cancer (n = 1472, 87,6%). L'inquiétude face au cancer était significativement (P < 0,04) augmentée parmi les plus jeunes patientes, avec un délai plus court depuis le diagnostic, une douleur liée au cancer/son traitement, une récidive, une chimiothérapie antérieure et un Ådème mammaire persistant. L'augmentation de la fatigue était significativement associée (P < 0,01) avec un IMC élevé, un délai plus court depuis le diagnostic, l'ethnicité, le statut face à l'emploi, la récidive, une chimiothérapie antérieure, une douleur persistante et des troubles du sommeil secondaires au traitement. La baisse des scores de répercussion sur le travail était significativement associée (P < 0,04) avec l'administration d'une chimiothérapie, un délai plus court depuis le diagnostic, l'emploi, la fatigue liée au traitement, un Ådème du sein et une douleur persistante. Conclusion: Cette étude révèle les caractéristiques des patients associées à une augmentation de l'inquiétude face au cancer, à la fatigue, et aux répercussions négatives sur le travail après un diagnostic de cancer du sein. Ces constatations peuvent informer les initiatives dans le domaine clinique et celui de la recherche pour mieux soutenir les patientes pendant leur traitement et leur survie.
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OBJECTIVES: Type 2 diabetes (T2D) management requires behavioural engagement to achieve optimal outcomes and continuous glucose monitoring (CGM) technologies may facilitate self-management. In this study we describe the development and validation of a self-report instrument, the Impact of Glucose Monitoring on Self-Management Scale (IGMSS), assessing the impact of device use (primarily CGM but also self-monitored blood glucose [SMBG]) on the capability, motivation, and opportunity to engage in self-management. METHODS: Potential items were generated from 3 sources: themes and quotes from 13 adults with T2D motivated by CGM use who participated in a qualitative study; behaviour change theory identifying capability, opportunity, and motivation to self-manage; and expert committee review of items. An initial pool of 42 items were generated describing CGM as promoting personalized knowledge, improved health (Capability), improved relationships, having positive device characteristics (Opportunity), and improved engagement in self-management (Motivation). Based on expert committee consensus, items were written so as to be completed by those using any glucose-sensing device (SMBG and CGM). Psychometric evaluation was conducted with 514 English-speaking Canadians. Scale reduction (22 final items) was completed using item-response distribution, internal consistency, factor analysis, and expert opinion. Construct and convergent validity were evaluated using the Impact of Glucose Monitoring Satisfaction Scale, the Diabetes Self-Management Questionnaire, the Diabetes Distress Scale, the 5-item World Health Organization Well-Being Index, and the Centre for Epidemiology Depression Scale. Test-retest reliability was determined for 130 participants. RESULTS: Internal consistency was high for all scales, ranging from 0.73 to 0.91. Test-retest reliability ranged from 0.58 to 0.79, except for Device Characteristics. Construct and convergent validity indices were acceptable. There was substantial overlap between the IGMSS and established measures of CGM satisfaction. IGMSS findings were also predictive of self-management behaviour and emotional functioning. CONCLUSIONS: The IGMSS has positive psychometric characteristics and has the potential to screen people with T2D for engagement in diabetes self-management using CGM or any sensing device. Scores can be determined for various aspects of Capability (Personalized Knowledge, Improved Health), Opportunity (Relationships and Device Characteristics), and Motivation.
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The Questionnaire for Patient-Surgeon Relationship (Q-PASREL) is a French "Patient-Reported Experience Measure" for hand surgery patients. It is the only one which considers the impact of the patient-surgeon relationship on time to return to work and cooperation by the surgeon for administrative issues. It has been shown that a good Q-PASREL score is associated with shorter sick leave and faster return to work. To make this instrument available to more countries, we translated the Q-PASREL into six languages (English, Spanish, German, Italian, Arabic and Persian), following a validated "translation and cultural adaptation" process guideline. This process includes multiple forward and backward translations, discussions and reconciliations with final harmonization and cognitive debriefing. For each language, a team was set up, comprising a key in-country hand surgery consultant, native target-language speaker and fluent in French, and several forward and back translators. The final translated versions were reviewed and approved by the project manager. The six versions of Q-PASREL are now available in the appendices of this publication.
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Lenguaje , Cirujanos , Humanos , Traducciones , Encuestas y Cuestionarios , Ausencia por EnfermedadRESUMEN
OBJECTIVE: Almost 80% of the patients responding to the nationwide French patient experience and satisfaction survey (e-Satis) provided free text comments. The objective of this article is to describe an innovative methodology for analysis of this qualitative data. METHODOLOGY: This methodological approach is based on analysis of qualitative data from the comments (verbatims) of respondents to the e-Satis survey. Analysis of the verbatims consists in three main steps: (i) analysis of the meaning of the words, with constitution of a thematic dictionary through exploratory research without preconceived notions; (ii) analysis of the syntax, i.e., the way in which the ideas are articulated, which will enable calculation of a linguistic indicator of speakers' involvement in their speech; (iii) production of statistics and characterisation of the themes, which will include three indicators: occurrence of the themes, the average satisfaction shown in the respondents' discourse, and the positive and negative involvement with which they express themselves. Given these results, a priority matrix of four categories of action is established: strong points, priority areas, good practices, and weak signals. RESULTS: This methodological approach was applied to 5868 e-Satis questionnaires out of a total of 10,061 verbatims by respondents hospitalised at the Hospices Civils de Lyon between 2018 and 2019. The analysis identified 28 major themes with 184 sub-themes. An extract is presented in this article for illustration purposes. DISCUSSION: A methodological approach based on analysis of qualitative data will enable transformation of unstructured data (verbatims) into measurable and comparable data. This methodology is structured to overcome the limitations of closed questions; open questions allow respondents to describe their experiences and perceptions in their own words. Moreover, it is a first step toward comparability of results over time with those of other establishments. This approach is unique in France on account of (a) its exploratory thematic research without preconceived notions and (b) its syntactic analysis of verbatims. CONCLUSIONS: This verbatim analysis methodology should enable precise and operational characterization of Patient Experience and induce prioritized improvement actions in healthcare institutions.
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Instituciones de Salud , Medición de Resultados Informados por el Paciente , Humanos , Encuestas y Cuestionarios , Satisfacción del Paciente , Proyectos de InvestigaciónRESUMEN
Reliable treatment burden measures are needed given the aging population and the associated increase in multimorbidity and polypharmacy. Treatment burden is defined as the effort to care for one's health and the resulting impact on one's daily life. This study aimed to translate the Multimorbidity Treatment Burden Questionnaire (MTBQ) for French-Canadians and assess its reliability and validity. The MTBQ was translated and tested with cognitive debriefing interviews, and the French version (MTBQ-F) was then administered 2 times among 105 participants. Reliability and validity were examined using the intra-class correlation coefficient (ICC), Cronbach's alpha, and Spearman's correlations. The median global MTBQ-F scores were 32.69 (interquartile range [IQR]: 21.15-48.08) and 30.77 (IQR: 21.15-46.15) for the first and second administrations, respectively. Test-retest (ICC: 0.73; 95% CI: 0.63-0.81) and internal consistency reliability (Cronbach's alpha: 0.80) were good. There was a moderate positive correlation between the MTBQ-F score and the number of self-reported conditions (rho: 0.28). This valid instrument could identify patients experiencing a high treatment burden and assess the impact of interventions among them.
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Comparación Transcultural , Multimorbilidad , Humanos , Anciano , Reproducibilidad de los Resultados , Psicometría , Canadá , Encuestas y Cuestionarios , Calidad de VidaRESUMEN
The relationship between patient-reported outcome measures and objective measures is important for understanding patient expectations. The aim of this study was to investigate the relationship of each section of the Michigan Hand Outcomes Questionnaire (MHQ) to objective measurements in patients with distal radius fracture (DRF). Eighty-four patients who were treated operatively or non-operatively for DRF were included. Injury severity was assessed by the Modified Hand Injury Severity Score. Joint motion was assessed at 6 and 12 weeks and grip strength at 12 weeks after non-operative treatment or surgery. The MHQ was used to assess hand functionality. The relationships between measurements were analyzed by Spearman correlation analysis. Statistical significance was set at p < 0.05. Fifty-one patients (60.7%) were women and 33 (39.3%) men. Mean age was 48.17 ± 12.26 (range, 20-64) years. Fifty-two (61.9%) patients were treated surgically and 32 (38.1%) non-operatively. Forearm pronation-supination and wrist flexion and ulnar deviation at week 6 and forearm pronation-supination, wrist extension and radial deviation at week 12 correlated with MHQ scores, unlike wrist extension and radial deviation at week 6 and flexion and ulnar deviation at week 12. Gross and fine grip strength at week 12 correlated with MHQ, except for the overall hand function, work performance and pain subsections. The MHQ subsections correlated with joint motion and grip strength in the early period after DRF. These findings clarified patient expectations in the early period.
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Fracturas del Radio , Adulto , Femenino , Fijación Interna de Fracturas , Humanos , Masculino , Persona de Mediana Edad , Fracturas del Radio/cirugía , Rango del Movimiento Articular , Muñeca , Articulación de la MuñecaRESUMEN
Current literature surrounding functional outcomes after total wrist arthrodesis is limited by short follow-up or limited use of validated patient reported outcome measures (PROMs). The primary aim of this study was to describe long-term functional outcomes following wrist arthrodesis. Secondary aims were to describe the incidence of complications and patient satisfaction. This was a retrospective single-center study. Patients with a minimum of 10-year follow-up completed a questionnaire including the Patient-Rated Wrist Evaluation (PRWE), the Quick version of the Disabilities of the Arm, Shoulder and Hand (Quick-DASH) score, the EQ-5D-5L score, and a question assessing satisfaction. Presence of a complication was also assessed. During the study period 66 patients underwent total arthrodesis. At a median follow-up of 15 years, complete patient reported outcomes were available for 34 patients. Thirty-two patients were lost to follow-up. Mean age at surgery was 49 and 16 patients were female. Mean PRWE and Quick-DASH scores were 44.8 (SD 27.7; range 0-96) and 41.9 (SD 23.6; range 2.3-97.7) respectively. Twenty-eight patients were satisfied. Nine patients reported complications. There were six cases of hardware removal and two cases of prominent metalwork. One patient underwent revision surgery for non-union. Presence of a complication did not affect the Quick-DASH or PRWE scores. Median EQ-5D-5L score was 0.7. This long-term follow-up suggests high levels of patient satisfaction and health related quality of life, despite significant functional disability. The complication rates are not insignificant, although the presence of a complication did not affect functional outcomes.
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Calidad de Vida , Muñeca , Artrodesis , Femenino , Humanos , Masculino , Estudios Retrospectivos , Articulación de la Muñeca/cirugíaRESUMEN
The aim was to identify determinants of satisfaction in patients with inflammatory diseases who underwent hand reconstruction using silicone metacarpophalangeal (MCP) arthroplasty. We hypothesized that patients taking biologic drugs would be more satisfied with the outcome. Patients who underwent silicone arthroplasty and had a minimum follow-up of 1 year were included. Patients rated their satisfaction with the treatment result and hand appearance on a 5-point Likert scale with a score of 5 indicating "very satisfied" and 1 indicating "very dissatisfied" and completed the brief Michigan Hand Outcomes questionnaire (MHQ). MCP range of motion (ROM), ulnar drift and grip strength were measured. Ordered logistic regression modelling and the Mann-Whitney U test were used. Forty-one patients with 118 operated fingers were available for follow-up at an average of 5.6 years after surgery. Patients were satisfied with the overall treatment result (score 4.4; SD 0.8), but only somewhat satisfied (score 3.3; SD 1.5) with their hand's appearance. Total MCP ROM was 61° (SD 21) with an ulnar deviation of 10° (SD 14). Appearance and ulnar deviation were significant determinants of satisfaction (R2=0.35). There was no difference in outcomes between patients using biologics and those who were not. Our hypothesis that patients taking biologics are more satisfied after surgery could not be proven. Hand appearance and ulnar drift are the most important determinants of satisfaction after reconstruction of MCP deformity.
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Artroplastia para la Sustitución de Dedos , Deformidades Adquiridas de la Mano/cirugía , Articulación Metacarpofalángica/cirugía , Satisfacción del Paciente , Siliconas , Anciano , Artritis/complicaciones , Femenino , Estudios de Seguimiento , Deformidades Adquiridas de la Mano/etiología , Fuerza de la Mano , Humanos , Lupus Eritematoso Sistémico/complicaciones , Masculino , Rango del Movimiento Articular , Esclerodermia Sistémica/complicacionesRESUMEN
OBJECTIVE: Diet-related quality of life has not been explored previously in patients with type 2 diabetes using sodium glucose cotransporter 2 (SGLT-2) inhibitors, the latest class of diabetes medications. In this study, we sought to describe the patient experience on SGLT-2 inhibitors and examine whether there have been improvements in dietary perception and satisfaction with these drugs. METHODS: Adults ≥40 years of age with type 2 diabetes and using SGLT-2 inhibitors for at least 1 month were recruited to take part in one-time 1-on-1 interviews. An interpretive descriptive methodology was used. Data collection and analysis occurred concurrently and a constant comparative analysis was used. RESULTS: An overall positive response to SGLT-2 inhibitor use was observed. Interviews revealed 3 themes: Recognizing, Reckoning and Realizing. In Recognizing, all patients reported a significant relationship with food that was typically negative and included feelings of food restriction and deprivation. Positive side effects of the drug in Reckoning included better glycemic control, weight loss and improved energy. Some participants were motivated in Realizing to pursue additional behavioural changes to improve their diabetes management. CONCLUSIONS: An improved dietary-related quality of life was described by some participants. Although not all individuals were seen to move into the Realizing phase after initiating an SGLT-2 inhibitor, there appeared to be an opportunity to create a behaviour change after positive Reckoning experiences.
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Diabetes Mellitus Tipo 2/tratamiento farmacológico , Satisfacción del Paciente , Inhibidores del Cotransportador de Sodio-Glucosa 2/uso terapéutico , Anciano , Femenino , Humanos , Masculino , Persona de Mediana Edad , Calidad de VidaRESUMEN
OBJECTIVES: To describe patient-reported outcomes (PROs) after initiation of treatment with canagliflozin (CANA) for type 2 diabetes mellitus (T2DM) in a real-world Canadian setting. METHODS: CANadian CAnagliflozin REgistry (CanCARE) is a prospective, observational, single-arm, real-world Canadian study of the effectiveness and safety of CANA for the treatment of T2DM in 527 subjects. PRO measures were collected in CanCARE using the Current Health Satisfaction Questionnaire (CHES-Q) at baseline and after 3, 6 and 12 months of CANA treatment to examine patient satisfaction regarding weight and overall health. Associations between changes in satisfaction with weight, systolic blood pressure (SBP) and glycated hemoglobin (A1C) levels were also investigated. RESULTS: Proportion of patients satisfied with their body weight and overall health increased from 22.1% and 26.9% at baseline to 32.4% and 49.2% after 12 months of CANA treatment, respectively. Satisfaction rates also increased on CHES-Q domains representing physical and emotional health. Correlations were found between improvement in satisfaction with body weight and weight loss (r=-0.29; p<0.01) and between improvements in satisfaction with overall health and weight loss (r=-0.13; p=0.03) and SBP (r=-0.17; p<0.01), but not with changes in A1C level. CONCLUSIONS: Treatment with CANA is associated with improvements in satisfaction with body weight and overall health, which may be important drivers of patient self-management and hold the potential to positively influence long-term outcomes in T2DM.