Stroke survivor follow-up in a national registry: Lessons learnt from respondents who completed telephone interviews

2018 ◽  
Vol 14 (2) ◽  
pp. 112-114
Author(s):  
Karen M Barclay-Moss ◽  
Natasha A Lannin ◽  
Brenda Grabsch ◽  
Monique Kilkenny ◽  
Dominique A Cadilhac
Keyword(s):  
Patient Reported Outcomes ◽  
Stroke Survivor ◽  
National Registry ◽  
Clinical Registry ◽  
Telephone Interviews ◽  
Disease Registries ◽  
Patient Reported ◽  
Health Related ◽  
Mailed Survey

The Australian Stroke Clinical Registry (AuSCR) collects patient-reported outcomes at 90–180 days post-stroke. During telephone interviews, stroke survivors or their carers/family members often explain why they did not respond to a previously mailed survey. This feedback is useful to explore respondents’ experiences of the follow-up process. Three main reasons for not returning surveys included: health-related time constraints, confusion about survey questions, and stroke denial. Such information is helpful in improving procedures for clinical quality disease registries and researchers using postal questionnaires.

Moving from a ‘One Size Fits All’ to Personalized Follow-Up in Breast Cancer Survivors—Connecting Patient-Reported Outcomes with Economic Considerations

2019 ◽  
pp. 307-316
Author(s):  
Carmen Dirksen ◽  
Merel Kimman ◽  
Manuela Joore ◽  
Liesbeth Boersma
Keyword(s):  
Breast Cancer ◽  
Economic Evaluation ◽  
Patient Reported Outcomes ◽  
Care Delivery ◽  
Process Of Care ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related ◽  
Economic Considerations

Abstract: In the Netherlands, two studies were performed to investigate the effectiveness of several alternative follow-up strategies in terms of patient-reported outcomes (health-related quality of life and satisfaction), and to address economic considerations in breast cancer follow-up care. This chapter describes the economic evaluation of four follow-up strategies after breast cancer treatment. As such, it provides an example of the application of economic methods to evaluate the relative value of breast cancer care. Whereas economic evaluation is outcome-focused, the process of care delivery is also a major determinant of patient value. Insight into patients’ preferences for outcome and process is crucial in order to tailor care to individual patients’ needs. Therefore, in a second study, patients’ preferences for the process of care delivery were evaluated.

scholarly journals Assessment of Patient-Reported Outcomes After Polytrauma: A Systematic Review

2020 ◽  
Author(s):  
Michaela Ritschel ◽  
Silke Kuske ◽  
Irmela Gnass ◽  
Silke Andrich ◽  
Kai Moschinski ◽  
...  
Keyword(s):  
Social Participation ◽  
Patient Reported Outcomes ◽  
Short Form ◽  
Data Extraction ◽  
Postal Survey ◽  
Study Results ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related

Abstract Background: Tools assessing patient-reported outcomes (PROs) after polytrauma have not been systematically reviewed so far. Therefore, we sought to: (1) collect instruments that assess health-related quality of life (HRQoL), activities of daily living (ADL), and social participation during follow-up after polytrauma, (2) describe their use (e.g. frequency of application during follow-up), and (3) investigate other relevant PROs assessed in the included studies (e.g. pain, depression, anxiety).Methods: The search was conducted in MEDLINE, Embase, CINAHL, PsycINFO, CENTRAL, the trials registers ClinicalTrials.gov, and WHO ICTRP. All original empirical research published between January 2005 and April 2018 was included. Data extraction, narrative content analysis, and a critical appraisal were performed.Results: The search yielded 3496 hits and 54 publications were included in the review. Predominantly, HRQoL was assessed (in 48 of 54 publications), with Short Form-36 Health Survey (SF-36) applied most frequently. ADL and (social) participation were rarely assessed. The follow-up period lasted between 8 days and 17.5 years; assessments were performed between one and five times. Most used were a single assessment of PROs, a follow-up period of 1 to 1.5 years, and a postal survey. Other relevant PRO areas reported were function, mental disorders, and pain.Conclusions: There is a large variation in the assessment of PROs after polytrauma, impairing comparability of outcomes. First efforts to standardise the collection of PROs have been initiated, but further harmonisation between central players, such as trauma registers, is required. Definition and continuous collection of core outcome sets would improve comparability of study results, creating the basis for more targeted treatment. Additional knowledge on rarely reported PRO areas like (social) participation and social network may lead to their consideration in health services provision.Registration: PROSPERO (CRD42017060825)

Individualized cancer follow-up supported by electronic Patient-Reported Outcomes: Development and evaluation (Preprint)

2020 ◽  
Author(s):  
Sissel Ravn ◽  
Henriette Vind Thaysen ◽  
Lene Seibaek ◽  
Victor Jilbert Verwaal ◽  
Lene Hjerrild Iversen
Keyword(s):  
Ct Scan ◽  
Advanced Cancer ◽  
Patient Reported Outcomes ◽  
Cost Benefit Analysis ◽  
Cost Benefit ◽  
Structured Interviews ◽  
European Organization ◽  
Individualized Care ◽  
Patient Reported

BACKGROUND Cancer survivors experience unmet needs during follow-up. Besides recurrence, a follow-up includes detection of late side effects, rehabilitation, palliation and individualized care. OBJECTIVE We aimed to describe the development and evaluate the feasibility of an intervention providing individualized cancer follow-up supported by electronic patient-reported outcomes (e-PRO). METHODS The study was carried out as an interventional study at a Surgical and a Gynecological Department offering complex cancer surgery and follow-up for advanced cancer. The e-PRO screened for a priori defined clinical important symptoms and needs providing individualized follow-up. We included following questionnaires in the e-PRO; the general European Organization for Research and Treatment of Cancer (EORTC) QLQ-C30 and the EORTC validated for colorectal and ovarian cancer patients. To support individualization, we included three prioritized issues of the patient’s preference in each e-PRO. The response-algorithm was aggregated based on the severity of the patient’s response. To ensure the sensitivity of the e-PRO, we performed semi-structured interviews with five patients. All clinicians (surgeons and gynecologists) performing the consultations reviewed the e-PRO. The evaluation was divided in two, 1)The feasibility was assessed by a)Patients’ response rate of the e-PRO, b)Number of follow-up visits documenting the use of e-PRO and c)Patients’ prioritized issues prior to the consultation(‘yes’ / ‘no’), and after the follow-up 2)Patients assessment of a)The need and purpose of the follow-up visit and b)the support provided during the follow-up visit. RESULTS In total, 187 patients were included in the study, of which 73%(n=136/187) patients responded to the e-PRO and were subjected to an individualized follow-up. The e-PRO was documented as applied in 79% of the follow-up visits. In total, 23% of the prioritized issues did not include a response. Stratified by time since surgery, significantly more patients did not fill out a prioritized issue had a follow-up >6 months since surgery. In total, 72 % follow-up visits were evaluated to be necessary in order to discuss the outcome of the CT scan, symptoms, and/or prioritized issues. Contrary, 19% of the follow-up visits were evaluated to be necessary only to discuss the result of the CT scan. A range from 19.3–56.3% of patients assessed the follow-up visit to provide support with respect to physical (42% of patients), mental (56%), sexual (19%) or dietary (27%) issues. Further, a range from 34–60% of the patients reported that they did not need support regarding physical (43% of patients), mental (34%), sexual (63%) or dietary (57%) issues. CONCLUSIONS An individualized follow-up based on e-PRO is feasible, and support most patients surgically treated for advanced cancer. However, results indicate that follow-up based on e-PRO may not be beneficial for all patients and circumstances. A thorough cost-benefit analysis may be warranted before implementation in routine clinic.

Minimum 10-Year Outcomes of Primary Arthroscopic Transosseous-Equivalent Double-Row Rotator Cuff Repair

2021 ◽  
pp. 036354652110154
Author(s):  
Adam M. Johannsen ◽  
Justin W. Arner ◽  
Bryant P. Elrick ◽  
Philip-C. Nolte ◽  
Dylan R. Rakowski ◽  
...  
Keyword(s):  
Rotator Cuff ◽  
Revision Surgery ◽  
Rotator Cuff Repair ◽  
Patient Reported Outcomes ◽  
Long Term Results ◽  
Double Row ◽  
Kaplan Meier ◽  
Patient Reported ◽  
Cuff Repair

Background: Modern rotator cuff repair techniques demonstrate favorable early and midterm outcomes, but long-term results have yet to be reported. Purpose: To determine 10-year outcomes and survivorship after arthroscopic double-row transosseous-equivalent (TOE) rotator cuff repair. Study Design: Case series; Level of evidence 4. Methods: The primary TOE rotator cuff repair procedure was performed using either a knotted suture bridge or knotless tape bridge technique on a series of patients with 1 to 3 tendon full-thickness rotator cuff tears involving the supraspinatus. Only patients who were 10 years postsurgery were included. Patient-reported outcomes were collected pre- and postoperatively, including American Shoulder and Elbow Surgeons (ASES), 12-Item Short Form Health Survey (SF-12), Single Assessment Numeric Evaluation (SANE), shortened version of the Disabilities of the Arm, Shoulder and Hand (QuickDASH), and satisfaction. Kaplan-Meier survivorship analysis was performed. Failure was defined as progression to revision surgery. Results: A total of 91 shoulders (56 men, 31 women) were included between October 2005 and December 2009. Mean follow-up was 11.5 years (range, 10.0-14.1 years). Of 91 shoulders, 5 (5.5%) failed and required revision surgery. Patient-reported outcomes for patients who survived were known for 80% (69/86). Outcomes scores at final follow-up were as follows: ASES, 93.1 ± 10.8; SANE, 87.5 ± 14.2; QuickDASH, 11.1 ± 13.5; and SF-12 physical component summary (PCS), 49.2 ± 10.1. There were statistically significant declines in ASES, SANE, and SF-12 PCS from the 5-year to 10-year follow-up, but none of these changes met the minimally clinically important difference threshold. Median satisfaction at final follow-up was 10 (range, 3-10). From this cohort, Kaplan-Meier survivorship demonstrated a 94.4% survival rate at a minimum of 10 years. Conclusion: Arthroscopic TOE rotator cuff repair demonstrates high patient satisfaction and low revision rates at a mean follow-up of 11.5 years. This information may be directly utilized in surgical decision making and preoperative patient counseling regarding the longevity of modern double-row rotator cuff repair.

scholarly journals Sex differences in outcomes after arthroscopic bankart repair

2020 ◽  
Vol 6 (1) ◽  
pp. e000965
Author(s):  
Natalie A Lowenstein ◽  
Peter J Ostergaard ◽  
Daniel B Haber ◽  
Kirsten D Garvey ◽  
Elizabeth G Matzkin
Keyword(s):  
Mental Health ◽  
Sex Differences ◽  
Patient Reported Outcomes ◽  
Strength Function ◽  
Bankart Repair ◽  
Level Of Evidence ◽  
Arthroscopic Bankart Repair ◽  
Patient Reported ◽  
Males And Females

ObjectivesRisk factors for anterior shoulder dislocation include young age, contact activities and male sex. The influence of sex on patient-reported outcomes of arthroscopic Bankart repair (ABR) is unclear, with few studies reporting potential differences. This study’s purpose was to compare patient-reported outcomes of males and females following ABR.MethodsProspectively collected data was analysed for 281 patients (males: 206, females: 75) after ABR with preoperative, 1-year and 2-year follow-up responses. The Wilcoxon signed-rank and χ2 tests, preoperative, 1 year and 2 year follow-up results were examined to determine differences of scores in males versus females.ResultsNo statistically significant sex differences were observed in Simple Shoulder Test (SST), American Shoulder and Elbow Surgeons (ASES), Visual Analogue Scale (VAS) or Single Assessment Numerical Evaluation (SANE) Scores at 1-year or 2-year follow-up. Females had lower Veterans RAND 12-item health survey (VR-12) mental health subscores at 2-year follow-up (females: 52.3±9.0, males: 55.8±7.6, p=0.0016). Females were more likely to report that treatment had ‘exceeded expectations’ at 2-year follow-up regarding motion, strength, function and normal sports activities.ConclusionResults of study demonstrate that ABR has similar outcomes for both males and females. There were no statistically significant sex-related differences in SST, ASES, VAS or SANE scores following ABR. VR-12 mental health subscores showed a minimal difference at 2-year follow-up, with lower scores in females.Level of evidenceRetrospective cohort study; level II.

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