The Potential Role of Symptom Questionnaires in Palliative and Supportive Cancer Care Delivery

The American Society of Clinical Oncology (ASCO) palliative care recommendations have been updated into a full guideline. Symptom questionnaires—completed and reviewed with patients during care delivery—are poised to play a large role in this guideline because they provide a more comprehensive understanding of symptoms. This article provides an overview of the guideline and describes how symptom questionnaires can be used to satisfy the guideline

Using Stakeholder Engagement to Overcome Barriers to Implementing Patient-reported Outcomes (PROs) in Cancer Care Delivery: Approaches From 3 Prospective Studies

Introduction: Patient-reported outcome (PRO) measures used during cancer care delivery improve communication about symptoms between patients and clinicians and reduce service utilization for uncontrolled symptoms. However, uptake of PROs in routine cancer care has been slow. In this paper, we describe stakeholder engagement activities used to overcome barriers to implementing PROs. Implementation occurred in 2 study settings: PROs completed in the waiting room and reviewed during clinical visits to guide symptom management for multiple myeloma (visit-based PROs); and weekly PROs completed by cancer patients between chemotherapy visits to monitor symptoms at home (remote PROs). Methods: PRO implementation steps across studies included: (1) clinician and patient input on key symptoms, PRO measures, and identifying which PRO responses are clinically concerning to better target nursing actions; (2) developing PRO-based clinical decision support (CDS) for responding to concerning PROs; (3) training clinicians and clinical research assistants to interpret PROs and use software; and (4) describing implementation impact (frequency of concerning PRO responses and nursing actions). Discussion: Clinician and patient input was critical for identifying key symptoms, PRO measures, and clinically concerning response options. For the visit-based PRO observational study, all symptom scores appeared on a clinician dashboard, and those rated ≥1 by patients (on a 0–4 or 0–10 scale) had PRO-based CDS available for access. For the 2 remote PROs trials, stakeholders recommended that the 2 “worst” response options (eg, PRO responses of “often”/“always” or “severe”/“very severe”) would trigger an automated email alert to a nurse along with PRO-based CDS. In each study, PRO-based CDS was tailored based on clinician input. Across studies, the most common nursing response to concerning PROs was counseling patients on (or providing care plans for) self-management of symptoms. In the trials, the percentage of weekly remote PROs generating an alert to a nurse ranged from 13% at an academic center to 36% in community oncology practices. Key Points: Across 3 prospective studies, PROs implemented into cancer care enabled tailored care based on issues identified on PROs. Stakeholder engagement was critical for successful implementation. This paper assists in addressing important PRO implementation challenges by describing a stakeholder-driven approach

Urinary incontinence and health-related quality of life among older Americans with and without cancer: a cross-sectional study

Abstract Background Few studies have investigated the impact of urinary incontinence (UI) on health-related quality of life (HRQOL) among cancer survivors. UI is prevalent in the general population and can be both an indicator of cancer and a side effect of cancer treatment. UI and cancer diagnoses have been associated with decreases in HRQOL. This study evaluates the prevalence of UI and the impact on HRQOL among older cancer survivors. Methods The prevalence of UI among cancer survivors (breast, prostate, bladder, colorectal, lung, and endometrial/uterine cancers) and those without cancer was estimated using the SEER-MHOS database. Factors associated with UI were investigated using logistic regression and the impact of UI on SF-36 scores was determined using linear regression. Results Over 36% of SEER-MHOS beneficiaries without cancer reported UI and higher prevalence was noted among cancer survivors (37%-54% depending on cancer type). History of bladder, breast, endometrial/uterine, or prostate cancer was associated with higher prevalence of UI. UI was independently associated with both lower physical component scores (PCS) (−1.27; 95%CI:-1.34,-1.20) and mental component scores (MCS) (−1.75; 95%CI −1.83, -1.68). A suggested decreasing trend in the prevalence of UI was associated with a longer time since cancer diagnosis. Conclusions UI was highly prevalent, especially in bladder, endometrial/uterine, and prostate cancer survivors. Improved recognition of UI risk among cancer survivors will help clinicians better anticipate and mediate the effect of UI on individuals’ HRQOL

The association between clinician-based common terminology criteria for adverse events (CTCAE) and patient-reported outcomes (PRO): a systematic review

Symptomatic adverse events (AEs) are monitored by clinicians as part of all US-based clinical trials in cancer via the U.S. National Cancer Institute’s Common Terminology Criteria for Adverse Events (CTCAE) for the purposes of ensuring patient safety. Recently there has been a charge toward capturing the patient perspective for those AEs amenable to patient self-reporting via patient-reported outcomes (PRO). The aim of this review was to summarize the empirically reported association between analogous CTCAE and PRO ratings

Coexistence of urinary incontinence and major depressive disorder with health-related quality of life in older Americans with and without cancer

This study evaluates the prevalence and factors associated with major depressive disorder (MDD) in a population of cancer survivors and the impact of co-occurring MDD and urinary incontinence (UI) on health-related quality of life (HRQOL)

Quality of Life Changes during the Pre- to Post-Diagnosis Period and Treatment-Related Recovery Time in Older Women with Breast Cancer

Healthcare providers have little population-based evidence about health-related quality of life (HRQOL) changes, from the pre- to post-diagnosis period, and treatment-related recovery time for women ages 65 and older diagnosed with breast cancer

Pilot randomized trial of an electronic symptom monitoring and reporting intervention for hospitalized adults undergoing hematopoietic stem cell transplantation

Purpose: Patients undergoing a hematopoietic stem cell transplantation (HCT) have varied symptoms during their hospitalization. This study examined whether daily symptom reporting (with electronic patient-reported outcomes [PROs]) in an inpatient bone marrow transplant clinic reduced symptom burden on post-transplant days +7, +10, and +14. Methods: A prospective, single-institution1:1 pilot randomized, two-arm study recruited HCT patients. HCT inpatients (N=76) reported daily on 16 common symptoms using the PRO version of the Common Terminology for Adverse Events (PRO-CTCAE). Fisher’s exact test was used to examine differences in the proportion of patients reporting individual symptoms. Multivariable linear regression modeling was used to examine group differences in peak symptom burden, while controlling for symptom burden at baseline, age, comorbidity, and transplantation type (autologous or allogeneic). Results: HCT patients receiving the PRO intervention also experienced lower peak symptom burden (average of 16 symptoms) at days +7, +10, and +14 (10.4 vs 14.5, p =0.03). Conclusions: Daily use of electronic symptom reporting to nurses in an inpatient bone marrow transplant clinic reduced peak symptom burden and improved individual symptoms during the two weeks post-transplant. A multi-site site trial is warranted to demonstrate the generalizability, efficacy, and value of this intervention

An evaluation of physicians’ engagement of children with asthma in treatment-related discussions

Our objectives were to examine whether providers engage children with asthma in treatment-related discussions at the level children prefer (engagement concordance) and to determine whether engagement concordance is related to child, caregiver, and provider characteristics. Children with asthma (n = 296) aged 8–16 years were recruited at five pediatric practices in North Carolina. Using audiotaped medical visit transcripts, we documented the number of treatment-related questions the providers asked the children. Children reported their preferred level of provider engagement. A logistic generalized estimating equation was used to determine which variables predicted engagement concordance. Most children (96.6%) wanted to be involved in treatment-related discussions. One-third of the providers did not ask children any treatment-related questions. Only 36.1% of provider–child dyads were concordant. Most discordant dyads were under-engaged (83.1%). Better engagement concordance was observed among older children (odds ratio (OR) = 1.19, 95% confidence interval (CI) (1.07, 1.33)), male children (OR = 1.67, 95% CI (1.03, 2.70)), and among providers with fewer years in practice (OR = .97, 95% CI (.94, .99)). Providers engaged in treatment-related discussions with younger children and females less frequently than these children preferred. Providers should ask children how much they want to be involved in treatment-related discussions and then attempt to engage children at the level they prefer

The Piper Fatigue Scale-12 (PFS-12): psychometric findings and item reduction in a cohort of breast cancer survivors

Brief, valid measures of fatigue, a prevalent and distressing cancer symptom, are needed for use in research. This study’s primary aim was to create a shortened version of the revised Piper Fatigue Scale (PFS-R) based on data from a diverse cohort of breast cancer survivors. A secondary aim was to determine whether the PFS captured multiple distinct aspects of fatigue (a multidimensional model) or a single overall fatigue factor (a unidimensional model)