Patient-Reported Morbidity Instruments: A Systematic Review

Objectives: Although comorbidities play an essential role in risk adjustment and outcomes measurement, there is little consensus regarding the best source of this data. The aim of this study was to identify general patient-reported morbidity instruments and their measurement properties. Methods: A systematic review was conducted using multiple electronic databases (Embase, Medline, Cochrane Central, and Web of Science) from inception to March 2018. Articles focusing primarily on the development or subsequent validation of a patient-reported morbidity instrument were included. After including relevant articles, the measurement properties of each morbidity instrument were extracted by 2 investigators for narrative synthesis. Results: A total of 1005 articles were screened, of which 34 eligible articles were ultimately included. The most widely assessed instruments were the Self-Reported Charlson Comorbidity Index (n = 7), the Self-Administered Comorbidity Questionnaire (n = 3), and the Disease Burden Morbidity Assessment (n = 3). The most commonly included conditions were diabetes, hypertension, and myocardial infarction. Studies demonstrated substantial variability in item-level reliability versus the gold standard medical record review (κ range 0.66-0.86), meaning that the accuracy of the self-reported comorbidity data is dependent on the selected morbidity. Conclusions: The Self-Reported Charlson Comorbidity Index and the Self-Administered Comorbidity Questionnaire were the most frequently cited instruments. Significant variability was observed in reliability per comorbid condition of patient-reported morbidity questionnaires. Further research is needed to determine whether patient-reported morbidity data should be used to bolster medical records data or serve as a stand-alone entity when risk adjusting observational outcomes data

Exercise and pregnancy in recreational and elite athletes: 2016/17 evidence summary from the IOC Expert Group Meeting, Lausanne. Part 3 - Exercise in the postpartum period

This is Part 3 in the series of reviews from the IOC expert committee on exercise and pregnancy in recreational and elite athletes. Part 1 focused on the effects of training during pregnancy and on the management of common pregnancy-related complaints experienced by athletes1; Part 2 addressed maternal and fetal perinatal outcomes.2 In this part, we review the implications of pregnancy and childbirth on return to exercise and on common illnesses and complaints in the postpartum period. The postpartum period can be divided into hospital-based (during hospital stay), immediate postpartum (hospital discharge to 6 weeks postpartum) and later postpartum (6 weeks to 1 year, corresponding sometimes to cessation of breast feeding).3 In the literature, the postpartum period is usually defined as the first 6 weeks after pregnancy, during which time women have not typically been encouraged to exercise, except for strength training of the pelvic floor muscles. However, 6 weeks is an arbitrary time point and, anecdotally, many elite athletes report starting exercise inside that period. For the purpose of the present review, we consider the postpartum period to be up to 12 months following birth

Ambulatory cancer care electronic symptom self-reporting (ACCESS) for surgical patients: A randomised controlled trial protocol

Introduction An increasing proportion of cancer surgeries are ambulatory procedures requiring a stay of 1 day or less in the hospital. Providing patients and their caregivers with ongoing, real-time support after discharge aids delivery of high-quality postoperative care in this new healthcare environment. Despite abundant evidence that patient self-reporting of symptoms improves quality of care, the most effective way to monitor and manage this self-reported information is not known. Methods and analysis This is a two-armed randomised, controlled trial evaluating two approaches to the management of patient-reported data: (1) team monitoring, symptom monitoring by the clinical team, with nursing outreach if symptoms exceed normal limits, and (2) enhanced feedback, real-time feedback to patients about expected symptom severity, with patient-activated care as needed. Patients with breast, gynaecologic, urologic, and head and neck cancer undergoing ambulatory cancer surgery (n=2750) complete an electronic survey for up to 30 days after surgery that includes items from a validated instrument developed by the National Cancer Institute, the Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE). Information provided to patients in the Enhanced Feedback group is procedure-specific and based on updated PRO-CTCAE data from previous patients. Qualitative interviews are also performed. The primary study outcomes assess unplanned emergency department visits and symptom-triggered interventions (eg, nursing calls and pain management referrals) within 30 days, and secondary outcomes assess the patient and caregiver experience (ie, patient engagement, patient anxiety and caregiver burden). Ethics and dissemination This study is approved by the Institutional Review Board at Memorial Sloan Kettering Cancer Center. The relationships between the study team and stakeholders will be leveraged to disseminate study findings. Findings will be relevant in designing future coordinated care models targeting improved healthcare quality and patient experience. Trial registration number NCT03178045

International mixed methods study protocol to develop a patient-reported outcome measure for all types of chronic wounds (the WOUND-Q)

INTRODUCTION: Most patient-reported outcome measures (PROM) for chronic wounds are specific to a single wound type (eg, pressure ulcer) or part of the body. A barrier to outcome assessment in wound care and research is the lack of a rigorously designed PROM that can be used across wound types and locations. This mixed method study describes the protocol for an international collaboration to develop and validate a new PROM called the WOUND-Q for adults with chronic wounds. METHODS AND ANALYSIS: In phase I, the qualitative approach of interpretive description is used to elicit concepts important to people with wounds regarding outcome. Participants from Canada, Denmark, the Netherlands, and the USA are aged 18 years and older and have a wound that has lasted 3 months or longer. Interviews are digitally recorded, transcribed and coded. A conceptual framework and preliminary item pool are developed from the qualitative dataset. Draft scales are formed to cover important themes in the conceptual framework. These scales are refined using feedback from people with chronic wounds and wound care experts. After refinement, the scales are translated into Danish and Dutch, following rigorous methods, to prepare for an international field-test study. In phase II, data are collected in Canada, Denmark, the Netherlands, and the USA. An international sample of people with a large variety of chronic wounds complete the WOUND-Q. Rasch Measurement Theory analysis is used to identify the best subset of items to retain for each scale and to

Oncoplastic Breast Consortium consensus conference on nipple-sparing mastectomy

Purpose Indications for nipple-sparing mastectomy (NSM) have broadened to include the risk reducing setting and locally advanced tumors, which resulted in a dramatic increase in the use of NSM. The Oncoplastic Breast Consortium consensus conference on NSM and immediate reconstruction was held to address a variety of questions in clinical practice and research based on published evidence and expert panel opinion. Methods The panel consisted of 44 breast surgeons from 14 countries across four continents with a background in gynecology, general or reconstructive surgery and a practice dedicated to breast cancer, as well as a patient advocate. Panelists presented evidence summaries relating to each topic for debate during the in-person consensus conference. The iterative process in question development, voting, and wording of the recommendations followed the modified Delphi methodology. Results Consensus recommendations were reached in 35, majority recommendations in 24, and no recommendations in the remaining 12 questions. The panel acknowledged the need for standardization of various aspects of NSM and immediate reconstruction. It endorsed several oncological contraindications to the preservation of the skin and nipple. Furthermore, it recommended inclusion of patients in prospective registries and routine assessment of patient-reported outcomes. Considerable heterogeneity in breast reconstruction practice became obvious during the conference. Conclusions In case of conflicting or missing evidence to guide treatment, the consensus conference revealed substantial disagreement in expert panel opinion, which, among others, supports the need for a randomized trial to evaluate the safest and most efficacious reconstruction techniques

Sun Protection Behavior Following Skin Cancer Resection and Reconstruction

Increased exposure to ultraviolet radiation (UVR) is associated with an increased risk of nonmelanoma skin cancer. Cutaneous surgery can be negatively influenced by UVR, causing delayed wound healing, hyperpigmentation of the scar, and an increased incidence of additional skin cancers. By changing sun protection behavior, these risks can be limited. Therefore, this study evaluates changes in patients' sun protective behavior after Mohs micrographic surgery (MMS). Patients undergoing MMS between December 2017 and November 2019 were included. Patients were asked to complete the FACE-Q Skin Cancer - Sun Protection Behavior checklist before and 3 months and 1 year post-surgery. A total of 125 patients completed the pre-operative and 3-months post-operative checklists, and 89 (71.2%) completed the 1-year post-operative checklist. Reported sun protective behaviors increased post-surgery at all time points (p < 0.001). Patients with a prior history of facial skin cancer demonstrated a larger increase in sun protection behaviors after surgery than patients without a history of facial skin cancer (p = 0.04). Patients with defects located on the ear or scalp demonstrated a lesser increase in sun protection behaviors than patients with defects located in more conspicuous areas as the face (p = 0.02). Our study demonstrates a change in sun protection behavior, with an increase in sun protection behavior over time in patients after MMS. However, more improvement is possible. Targeted counseling can increase sun protection behavior in patients without a history of facial skin cancer and patients with skin cancer located on the ears or scalp

Applying Computerized Adaptive Testing to the FACE-Q Skin Cancer Module: Individualizing Patient-Reported Outcome Measures in Facial Surgery

Background: Skin cancer is among the most frequently occurring malignancies worldwide, which creates a great need for an effective patient-reported outcome measure. Providing shorter questionnaires reduces patient burden and increases patients' willingness to complete forms. The authors set out to use computerized adaptive testing to reduce the number of items needed to predict results for scales of the FACE-Q Skin Cancer Module, a validated patient-reported outcome measure that measures health-related quality of life and patient satisfaction in facial surgery. Methods: Computerized adaptive testing generates tailored questionnaires for patients in real time based on their responses to previous questions. The authors used an open-source computerized adaptive testing simulation software to run item responses for the five scales from the FACE-Q Skin Cancer Module (i.e., scar appraisal, satisfaction with facial appearance, appearance-related psychosocial distress, cancer worry, and satisfaction with information about appearance). Each simulation continued to administer items until prespecified levels of precision were met, estimated by standard error. Mean and maximum item reductions between the original fixed-length short forms and the simulated versions were evaluated. Results: The number of questions that patients needed to answer to complete the FACE-Q Skin Oncology Module was reduced from 41 items in the original form to a mean of 23 +/- 0.55 items (range, 15 to 29) using the computerized adaptive testing version. Simulated computerized adaptive testing scores maintained a high correlation (0.98 to 0.99) with the score from the fixed-length short forms. Conclusions: Applying computerized adaptive testing to the FACE-Q Skin Cancer Module can reduce the length of assessment by more than 50 percent, with virtually no loss in precision. It is likely to play a critical role in the implementation in clinical practice

To see or not to see: Impact of viewing facial skin cancer defects prior to reconstruction

Patient expectations of the scar after Mohs micrographic surgery (MMS) are often not realistic, leading to subsequent psychosocial sequelae such as anxiety, depression, and avoidance of social situations. When patient expectations are not met, this may also contribute to a decrease in patient satisfaction after surgery. Therefore, altering expectation levels may change patient satisfaction and psychosocial distress levels after surgery. To assess whether patient satisfaction improves in patients after MMS when patients view the surgical defect prior to reconstruction. Patients undergoing facial MMS between December 2017 and September 2019 were included. Patients received or did not receive a mirror after MMS to view the surgical defect before closing the defect. Patients were asked to complete the Dutch FACE-Q Skin Cancer before, one-week, three-months, and one-year after MMS. A total of 113 patients where included. One-hundred-eight (95.6%), 113 (100%), and 93 (82.3%) questionnaires were completed, one-week, three-months, and one-year follow-up, respectively. Satisfaction with facial appearance and appraisal of scars significantly improved over time for all patients, no such improvement was seen for appearance-related distress. Female patients who looked in the mirror had higher satisfaction with facial appearance than female patients who did not look in the mirror. Also, lower appearance-related distress scores were seen in patients who looked in the mirror prior to a flap reconstruction. Showing the defect in the mirror prior to the reconstruction may result in higher patient satisfaction in female patients and patients before undergoing a flap reconstruction