Multidimensional Outcome Research Articles

Multidimensional Outcome Measurement of Children and Youth With Neuropathy Following Treatment of Leukemia: Cross-sectional Descriptive Report

Background: Children/youth with chemotherapy induced peripheral neuropathy (CIPN) experience many impairments, activity limitations, and participation restrictions. Objective: The objective of this study was to describe the use and feasibility of selected multi-dimensional outcome measures of functioning, disability, and health in children/youth with CIPN following treatment for acute lymphoblastic leukemia. Methods: A selection of clinician evaluated and patient reported outcome measures encompassing all dimensions of the International Classification of Functioning, Disability and Health was collected from seventeen children/youth with CIPN within a study of 3D instrumented motion analysis. Measures included the pediatric modified Total Neuropathy Scale, ankle strength and range of motion, six-minute walk test, Edinburgh Visual Gait Score, Oxford Ankle and Foot Questionnaire, Bruininks-Oseretsky Test of Motor Proficiency running speed and agility subtest, and Pediatric Outcomes Data Collection Instrument Transfers and Basic Mobility, Sports/Physical Functioning, and Pain/Comfort scales. Results: The measures were shown to be feasible and were able to demonstrate differences compared to normative data. They showed variability within the group of children/youth with CIPN except for the running speed and agility test, which had a floor effect. The Edinburgh Visual Gait Scores correlated significantly (r = −0.668, p <0.001) with the Gait Deviation Index, a summary score of kinematic gait data from the 3D motion analysis study. Conclusion: These measures can contribute clinical practice, research, and the development of core outcome set registries.

On the construction of a feasible range of multidimensional poverty under benchmark weight uncertainty

There are infinitely many alternative benchmark weights that decision makers could choose to measure multidimensional poverty. To overcome the resulting uncertainty, we derive a feasible range of multidimensional poverty that considers all admissible weights within the chosen lower and upper bounds of weights. We use Kenyan and Canadian data to illustrate the use of our methodology, which is an adaptation of existing methods for portfolio analysis based on stochastic dominance. These two-empirical analyses suggest that different weights allocated to poverty dimensions can produce very different multidimensional poverty outcomes for a given population even in cases with small weight perturbations.

Three distinct physical behavior types in fatigued patients with multiple sclerosis

BackgroundMultiple sclerosis often leads to fatigue and changes in physical behavior (PB). Changes in PB are often assumed as a consequence of fatigue, but effects of interventions that aim to reduce fatigue by improving PB are not sufficient. Since the heterogeneous nature of MS related symptoms, levels of PB of fatigued patients at the start of interventions might vary substantially. Better understanding of the variability by identification of PB subtypes in fatigued patients may help to develop more effective personalized rehabilitation programs in the future. This study aimed to identify PB subtypes in fatigued patients with multiple sclerosis based on multidimensional PB outcome measures.MethodsBaseline accelerometer (Actigraph) data, demographics and clinical characteristics of the TREFAMS-ACE participants (n = 212) were used for secondary analysis. All patients were ambulatory and diagnosed with severe fatigue based on a score of ≥35 on the fatigue subscale of the Checklist Individual Strength (CIS20r). Fifteen PB measures were used derived from 7 day measurements with an accelerometer. Principal component analysis was performed to define key outcome measures for PB and two-step cluster analysis was used to identify PB types.ResultsAnalysis revealed five key outcome measures: percentage sedentary behavior, total time in prolonged moderate-to-vigorous physical activity, number of sedentary bouts, and two types of change scores between day parts (morning, afternoon and evening). Based on these outcomes three valid PB clusters were derived.ConclusionsPatients with severe MS-related fatigue show three distinct and homogeneous PB subtypes. These PB subtypes, based on a unique set of PB outcome measures, may offer an opportunity to design more individually-tailored interventions in rehabilitation.Trial registrationClinical trial registration no ISRCTN 82353628, ISRCTN 69520623 and ISRCTN 58583714.

CaringGuidance\u2122 after breast cancer diagnosis eHealth psychoeducational intervention to reduce early post-diagnosis distress

PurposeSignificant cancer-related distress affects 30–60% of women diagnosed with breast cancer. Fewer than 30% of distressed patients receive psychosocial care. Unaddressed distress is associated with poor treatment adherence, reduced quality of life, and increased healthcare costs. This study aimed to evaluate the preliminary efficacy of a new web-based, psychoeducational distress self-management program, CaringGuidance™ After Breast Cancer Diagnosis, on newly diagnosed women’s reported distress.MethodsOne-hundred women, in five states, diagnosed with breast cancer within the prior 3 months, were randomized to 12 weeks of independent use of CaringGuidance™ plus usual care or usual care alone. The primary multidimensional outcome, distress, was measured with the Distress Thermometer (DT), the Center for Epidemiologic Studies Depression Scale (CES-D), and the Impact of Events Scale (IES) at baseline and months 1, 2, and 3. Intervention usage was continually monitored by the data analytic system imbedded within CaringGuidance™.ResultsAlthough multilevel models showed no significant overall effects, post hoc analysis showed significant group differences in slopes occurring between study months 2 and 3 on distress (F(1,70) = 4.91, p = .03, η2 = .065) measured by the DT, and depressive symptoms (F(1, 76) = 4.25, p = .043, η2 = .053) favoring the intervention.ConclusionsResults provide preliminary support for the potential efficacy of CaringGuidance™ plus usual care over usual care alone on distress in women newly diagnosed with breast cancer. This analysis supports and informs future study of this self-management program aimed at filling gaps in clinical distress management.

Patient assessment and selection for pulmonary rehabilitation.

Pulmonary rehabilitation (PR) is beneficial for people with several forms of chronic respiratory disease. Given the existing limitations on availability of PR services, it is important to identify participants who are most likely to benefit from it. Identification of criteria for patient referral to PR is challenging, as chronic respiratory diseases and their medical and psychosocial co-morbidities place a complex and multifaceted burden on patients. Although research studies have attempted to identify key parameters predictive of 'responsiveness to PR', to date no firm physiological, psychosocial or other criteria exist by which optimal patient candidacy can be determined. Moreover, individual factors do not reliably predict successful multidimensional PR outcomes. In general, individuals who remain symptomatic with dyspnoea, fatigue and exercise intolerance; who have difficulty performing activities of daily living (ADL); and who are having difficulty coping with or managing their disease despite optimized pharmacological therapy are potential candidates for PR. Patient assessment and outcome measurement are core essential features of PR. To be considered as a PR programme, rehabilitation programmes must demonstrate, at a minimum, assessment and outcome measurement in regard to exercise capacity, dyspnoea and health-related quality of life. Additional parameters, including physical activity, nutritional status, tobacco use status, patient knowledge and self-efficacy, performance of ADL, fatigue, disease exacerbations, hospitalizations and other urgent healthcare utilization, and behavioural outcomes, including coping styles, patient satisfaction and programme metrics, are other relevant and important aspects of patient assessment and outcome measurement that should be considered and undertaken in PR, where feasible.

Development and Psychometric Properties of a Social Problem Solving Test for Adolescents

This study examined the psychometric properties of the social problem solving test (SPST) using two samples of Vietnamese high school students: 247 regular students (referred to as normal students) and 168 “disruptive” students who had been diagnosed as having behavioral problems. The SPST is a performance measure of interpersonal problem-solving competence in adolescents. The SPST consists of 24 interpersonal problematic situations, set in two parts, 12 stories in SPST-A (stories-a) and 12 stories in SPST-B (stories-b). The SPST-A was structured into five subscales that were designed to assess the five components of social problem-solving competency based on the modified multi-dimensional problem-solving model. The SPST-B was divided into two scales to assess overall problem-solving abilities: problem affect-cognitions (orientation) and problem-solving actions (strategies or skills). The Social Problem-Solving Inventory-Revised standardized, was used to appraise the validity of the SPST-A. The preliminary data concerning the reliability and validity of these instruments were reported. The results provided evidence that the scales had acceptable internal consistency, concurrent validity and construct validity and that the SPST seem to be a promising multidimensional outcome measure of social problem-solving competence in Vietnamese adolescents.

Community-Based Watershed Change: A Case Study in Eastern Congo

Conflict and environmental degradation in the Democratic Republic of the Congo are interrelated and complex. The authors conducted a case study of a community-based environmental restoration project in Eastern Congo and provide early results which suggest a link between community environmental action and multidimensional outcomes such as peace and reconciliation. The project examined in this study is based on a framework (Theory of Change) which networks communities through autonomous savings groups, churches, mosques, schools, and a community leadership network with the goal of catalyzing sustainable farming, reforestation, and community forest management. The primary project input was training, and the resulting voluntary community action included tree planting and the management of common forest areas. A mixed-methods approach was used to evaluate project results comparing two watersheds, and included a difference in differences analysis, participatory workshops, remote sensing analysis, and community activity reports. Positive change was observed in the treatment watershed in terms of ecosystem health and household economic condition. Results suggest a possible influence on peace conditions which, while fragile, offers hope for continued restorative action by communities. This study provides evidence that a community-based approach to environmental restoration may have a positive influence on multidimensional issues such as forests, watershed health, economic well-being, and peace.

O5.7. THE FIRST EPISODE PSYCHOSIS OUTCOME STUDY: PRELIMINARY 15 YEAR PHYSICAL HEALTH OUTCOMES OF FIRST EPISODE PSYCHOSIS PATIENTS WHO WERE TREATED AT THE EARLY PSYCHOSIS PREVENTION AND INTERVENTION CENTRE BETWEEN 1998–2000

Abstract Background Specialist early intervention (SEI) service models are designed to treat symptoms, promote social and vocational recovery, prevent relapse, and resource and up skill patients and their families. While the immediate benefits of SEI are clear, and have been demonstrated, the long-term impact of SEI on illness course is less clear. The First Episode Outcome Study involves the long-term follow-up of a representative sample of first episode psychosis patients who were first treated at the Early Psychosis Prevention and Intervention Centre (EPPIC) between 1998 and 2000. In this presentation the preliminary data on physical health outcomes are reported. Methods Between January 1998 and December 2000, 661 patients between the ages of 15–29 years were treated at the Early Psychosis Prevention and Intervention Centre, Melbourne Australia. The 18-month treatment characteristics of this cohort have been extensively examined in the First Episode Psychosis Outcome Study (FEPOS). The long-term outcomes of this cohort are now being examined in a new study (known as FEPOS15). Results The rates of self-report physical health problems in 100 participants 15 years after being treated for a first episode psychosis were significant for high cholesterol (41%), asthma (33.7%), chronic pain (25.3%), allergies (19.3%), respiratory problems (16.9%) anemia (12.2%), arthritis (12.0%), hepatitis C (10.8%) and diabetes (6.3%). Cardiovascular problems were also noted including heart attack (2.4%), other heart problems (8.4%), and stroke (3.6%). Sexual health problems are explored. Physical health findings pertaining to Coroners’ findings on those who had died will be also used to describe the long-term impacts of psychotic disorder. Discussion This follow-up study is one of the longest, largest and most comprehensive studies of the multidimensional outcomes of a SEI service for psychosis. The physical health outcomes of individuals 15-years after the first episode psychosis are poor. The importance of monitoring and managing physical health problems in those with psychotic disorder is highlighted.

Defining and Measuring Moral Injury: Rationale, Design, and Preliminary Findings From the Moral Injury Outcome Scale Consortium.

In the current paper, we first describe the rationale for and methodology employed by an international research consortium, the Moral Injury Outcome Scale (MIOS) Consortium, the aim of which is to develop and validate a content-valid measure of moral injury as a multidimensional outcome. The MIOS Consortium comprises researchers and clinicians who work with active duty military service members and veterans in the United States, the United Kingdom, the Netherlands, Australia, and Canada. We describe the multiphase psychometric development process being conducted by the Consortium, which will gather phenomenological data from service members, veterans, and clinicians to operationalize subdomains of impact and to generate content for a new measure of moral injury. Second, to illustrate the methodology being employed by the Consortium in the first phase of measure development, we present a small subset of preliminary results from semistructured interviews and questionnaires conducted with care providers (N = 26) at three of the 10 study sites. The themes derived from these initial preliminary clinician interviews suggest that exposure to potentially morally injurious events is associated with broad psychological/behavioral, social, and spiritual/existential impacts. The early findings also suggest that the outcomes associated with acts of commission or omission and events involving others' transgressions may overlap. These results will be combined with data derived from other clinicians, service members, and veterans to generate the MIOS.

Do prognostic variables predict a set of outcomes for patients with chronic low back pain: a long-term follow-up secondary analysis of a randomized control trial

ABSTRACTObjective: The objective was to explore for universal prognostic variables, or predictors, across three different outcome measures in patients with chronic low back pain (LBP). We hypothesized that selected prognostic variables would be ‘universal’ prognostic variables, regardless of the outcome measures used.Methods: This study was a secondary analysis of data from a previous randomized controlled trial comparing the McKenzie treatment approach with placebo in patients with chronic LBP. Ten baseline prognostic variables were explored in predictive models for three outcomes: pain intensity, disability, and global perceived effect, at 6 and 12 months. Predictive models were created using backward stepwise logistic and linear multivariate regression analyses.Results: Several predictors were present including age, expectancy of improvement, global perceived effect; however, we only identified baseline disability as a universal predictor of outcomes at 6 months. The second most represented universal predictor was baseline pain intensity for outcomes at 12 months.Discussion: Only two predictors demonstrated an association with more than one outcome measure. High baseline disability predicts multidimensional outcome measures at 6 months in patients with chronic LBP while baseline pain intensity can best predict the outcome at 12 months. Nevertheless, other predictors seem to be unique to the outcome used.Level of evidence: 2c.

Australian children undergoing selective dorsal rhizotomy: protocol for a national registry of multidimensional outcomes

IntroductionSelective dorsal rhizotomy (SDR) is a neurosurgical intervention intended to permanently reduce spasticity in the lower limbs and improve mobility in selected children with cerebral palsy (CP). Despite SDR having...

Facilitating patient-centered care: the development of illustrated multidimensional patient-reported outcome measures for children/adolescents with juvenile idiopathic arthritis.

To assess the validity, reliability, comprehensibility, and responsiveness to change of an illustrated child/parent multidimensional patient-reported outcome measures (PROMs) questionnaire which can assess construct outcome measures of children with juvenile inflammatory arthritis. A total of 122 children with juvenile idiopathic arthritis were included in this work in a multicenter study. The questionnaire included seven categories: (1) functional ability; (2) health-related quality of life; (3) disease activity measures: pain, global assessment, fatigue, and morning stiffness; (4) self-reported joint tenderness; (5) current medication, side effects, and adherence to therapy; (6) comorbidities; and (7) patient motivation. All the items were supported by illustrations to provide children with a visual impression of what was meant by the questions. The questionnaire has parent and patient versions. The disease activity status was assessed using JADAS-27. The questionnaire was reliable as demonstrated by a high-standardized alpha (0.890-0.978). The questionnaire items correlated significantly (p < 0.01) with clinical parameters of disease activity. The patient-reported tender joints correlated significantly with the physician's scores (0.842). Changes in functional disability, quality of life, and the motivation score showed significant variation (p < 0.01) with disease activity status in response to therapy. The illustrated PROMs questionnaire showed also a high degree of comprehensibility (9.6). Integrating PROMs into standard clinical practice is feasible and applicable. The illustrated questionnaire was valid and reliable. It provides an informative, quantitative measure for the disease activity score set data, and in the meantime, facilitates the assessment of the children's adherence to therapy, comorbidities, and motivation on an individual basis.

Surgical training in spine surgery: safety and patient-rated outcome.

The aim of this study was to investigate the difference in patient-reported outcomes and surgical complication rates between lumbar procedures carried out either by experienced board-certified spine surgeons (BCS) or by supervised spine surgery residents (RES) in a large Swiss teaching hospital. This was a single-center retrospective analysis of data collected prospectively within the framework of the EUROSPINE Spine Tango Registry. It involved the data of 1415 patients undergoing first-time surgery in our institution between the years 2004 and 2016. Patients were divided into three groups based on the surgical procedure: lumbar single-level fusion (SLF), single-level decompression (SLD) for lumbar spinal stenosis and disc hernia procedures (DH). Patient-reported outcome measures (primary outcome) included the multidimensional Core Outcome Measures Index (COMI) preoperatively and 3 and 12months postoperatively plus single items concerning satisfaction with care and global treatment outcome (GTO). Secondary outcomes included surgical variables such as blood loss, duration of surgery, complication rates and length of stay. There were no significant differences between the RES and BCS patient groups for most of the demographic and baseline clinical variables with the exception of age in the SLD group (p = 0.012), BMI in the DH group (p = 0.02) and leg pain in the SLF group (p = 0.03). COMI scores improved significantly after all three types of procedure (p < 0.0001) without significant difference (p > 0.05) between the patients of RES and BCS. There was no significant difference (p > 0.05) between RES and BCS patients with regard to satisfaction and GTO. There were no significant differences between RES and BCS (p > 0.05) in the surgical or medical complication rates. In the given setting, surgical training of spine surgery residents under guided supervision by board-certified spine surgeons was shown to be safe, as it was not associated with greater morbidity or mortality. Furthermore, it had no detrimental influence on patient-reported outcomes. The findings can be used to give reassurance to prospective patients that are to be operated on by supervised spine surgery residents. These slides can be retrieved under Electronic Supplementary Material.

Instruments to Measure Outcomes in Pediatric Palliative Care: A Systematic Review.

Pediatric palliative care (PPC) is intended to promote children's quality of life by using a family-centered approach. However, the measurement of this multidimensional outcome remains challenging. To review the instruments used to assess the impact of PPC interventions. Five databases (Embase, Scopus, The Cochrane Library, PsychInfo, Medline) were searched. Inclusion criteria were as follows: definition of PPC used; patients aged 0 to 18 years; diseases listed in the directory of life-limiting diseases; results based on empirical data; and combined descriptions of a PPC intervention, its outcomes, and a measurement instrument. Full-text articles were assessed and data were extracted by 2 independent researchers, and each discrepancy was resolved through consensus. The quality of the studies was assessed by using the Standard Quality Assessment Criteria for Evaluating Primary Research Papers From a Variety of Fields checklist. Nineteen of 2150 articles met the eligibility criteria. Researchers in 15 used quantitative methods, and 9 were of moderate quality. Multidimensional outcomes included health-related quality of life, spiritual well-being, satisfaction with care and/or communication, perceived social support, and family involvement in treatment or place-of-care preferences. PPC interventions ranged from home-based to hospital and respite care. Only 15 instruments (of 23 reported) revealed some psychometric properties, and only 5 included patient-reported (child) outcome measures. We had no access to the developmental process of the instruments used to present the underlying concepts that were underpinning the constructs. Data on the psychometric properties of instruments used to assess the impact of PPC interventions were scarce. Children are not systematically involved in reporting outcomes.

The Correlation Between Disease Activity Assessed by DAS28-ESR and Quality of Life Assessed by SF-36 in Rheumatoid Arthritis Patients

Background Rheumatoid arthritis is the most prevalent form of inflammatory arthritis. One of the key components for its multidimensional outcome is the disease activity, measured by DAS28-ESR. The physical, emotional, and social aspects of RA contribute to the quality of life, and SF-36 questionnaire can be used to measure it. This study aims to ascertain the correlation between the disease activity (DAS28-ESR) and the quality of life (SF-36) in RA patients. &#x0D; Method This study was an analytical, descriptive study with a cross sectional design that took primary data from RA patients undergoing treatment in Rheumatology Clinic of Hasan Sadikin Hospital from February to April 2015. The patient’s data included sex, age, marital status, employment status, educational level, serostatus (RF and Anti-MCV), duration of diagnosis, total number of medications, total number of DMARD, DAS28-ESR scores, and SF-36 scores. The data was analysed with the Shapiro-Wilk normality test, followed by the Rank-Spearman correlation analysis.&#x0D; Result There were 42 subjects, with an average age of 41 ± 12. The ratio between females and males was 20:1, and the majority of subjects (73,8%) had a positive serostatus (RF and/or anti-MCV). The score median of DAS28-ESR was 4,3, with the score median for SF-36 PCS being 39,8 and the score median for SF-36 MCS being 48,2. Based on the the Rank-Spearman analysis (CI of 95%), there was a correlation between DAS28-ESR score and SF-36 PCS score, with the correlation coefficient (r) of -0,577 (p &lt; 0,001), and there was also a correlation between DAS28-ESR score and SF-36 MCS score with r of -0,368 (p = 0,008).&#x0D; Conclusion There was a strong negative correlation between disease activity and physical component of quality of life, and a moderate negative correlation between disease activity and mental component of quality of life, and the two correlations were statistically significant.

Buy-In for Back Pain: Does Individualization Matter?

ABSTRACT Background: The aim of this study was to investigate the effect of individualization of an exercise program on the buy-in received from chronic low back pain (CLBP) patients. Methods: Participants were randomized to 8 weeks of an individualized (IEP) or general exercise program (GEP). All participants were required to attend one 1:1 session per week with an exercise physiologist and 4 home-based sessions. Clinical outcomes were assessed with the Oswestry Disability Index (ODI) and visual analog pain scale (VAS) measured before and after the 8-week intervention along with barrier self-efficacy and adherence. Additionally, multidimensional outcome expectations, exercise self-efficacy, and intention to exercise were measured before the intervention, after the first session, and after 8 weeks. Measures were taken after the first session to observe if clinical assessment and informing the patient that the program was individualized manipulated beliefs differently compared to providing a GEP. Beliefs about the program after the first session were elevated in both groups. Results: Adherence to the supervised and home-based sessions was high and similar between groups. Clinical outcome measures were similar with both groups showing significant reduction from baseline in the ODI (P ≤ 0.01). Conclusion: Thus, it appears an individualized program is no more beneficial than a GEP for CLBP. Clinically, it appears a GEP is an intelligent choice for practitioners as it negates the need for clinical assessments, which appear to add no benefit to outcomes or adherence.

Neurotrauma as a big-data problem.

The field of neurotrauma research faces a reproducibility crisis. In response, research leaders in traumatic brain injury (TBI) and spinal cord injury (SCI) are leveraging data curation and analytics methods to encourage transparency, and improve the rigor and reproducibility. Here we review the current challenges and opportunities that come from efforts to transform neurotrauma's big data to knowledge. Three parallel movements are driving data-driven-discovery in neurotrauma. First, large multicenter consortia are collecting large quantities of neurotrauma data, refining common data elements (CDEs) that can be used across studies. Investigators are now testing the validity of CDEs in diverse research settings. Second, data sharing initiatives are working to make neurotrauma data findable, accessible, interoperable, and reusable (FAIR). These efforts are reflected by recent open data repository projects for preclinical and clinical neurotrauma. Third, machine learning analytics are allowing researchers to uncover novel data-driven-hypotheses and test new therapeutics in multidimensional outcome space. We are on the threshold of a new era in data collection, curation, and analysis. The next phase of big data in neurotrauma research will require responsible data stewardship, a culture of data-sharing, and the illumination of 'dark data'.

Gender Differences in Multidimensional Outcomes Among Community-Dwelling Adults With Traumatic Brain Injury

To descriptively characterize gender differences in multidimensional outcomes after traumatic brain injury (TBI).

Outcome measurement in paediatric palliative care: lessons from the past and future developments.

The need for paediatric palliative care (PPC) globally is great yet there is limited evidence of the quality or outcomes of the care provided. The lack of an outcome measure for PPC has been consistently cited as one reason for the lack of robust evidence in the field. Thus recommendations have been made for the development of locally relevant, validated tools to measure outcomes for children. This paper reviews relevant outcomes and quality measures in PPC, the current state of science on outcome measurement for children and young people (CYP) with life-limiting and life-threatening conditions and the development of the African Children's Palliative Outcome Scale (C-POS). Lessons learnt from the past are presented before looking ahead at the need for future developments in outcome measures in PPC. A narrative review was undertaken and authors have drawn upon reflective insights from their collective experiences. Outcomes can be measured in a variety of ways, and due to the multi-dimensional nature of PPC, outcomes can be complex and hard to measure. Whilst there are a variety of outcome measures for use in adult palliative care, a similar range of tools does not exist in PPC. Literature reviews have confirmed the absence of a multi-dimensional PPC outcome measurement tool. Following on from their success in developing an outcome scale for adults in Africa, the African Palliative Care Association (APCA) have developed a multi-dimensional outcome tool for PPC-the African C-POS. Tool development and validation followed the COSMIN guidance. The draft C-POS consists of 12 questions, 8 in Section A for the child, and 4 in Section B for the parents/carers. The tool has been developed across eight African countries and is the first specifically designed, multi-dimensional outcome measure for PPC. Lessons have been learnt in the development of outcome scales in palliative care, including those specifically for PPC such as: undertaking research in PPC; the definition of PPC; if you ask a child what their concerns are they will tell you; do you use child and or proxy report? do you have different tools for different ages? what methods of scoring should be used? is it an outcome tool, an assessment tool or both? the length of the outcome measure; the length of time it takes to develop; and, it won't be perfect. Whilst progress has occurred through the development of the C-POS there is still a long way to go in the development of outcome measures for PPC. Future developments include: finalization and publication of the African C-POS; utilization of the C-POS in clinical practice, research and audit; collation and review of data sets; and the development of C-POS in different settings. The measurement of outcomes in PPC is an imperative. Whilst there are challenges in developing outcome tools and utilizing them in practice, these should not prevent us from advancing the field. The development of the first outcome measure for PPC the African C-POS is a key milestone in the ongoing development and utilization of outcome measures for PPC.

Modeling symptom drivers of oral intake in long-term head and neck cancer survivors.

This study examined the relationship between self-reported symptom severity and oral intake in long-term head and neck cancer (HNC) survivors. An observational survey study with retrospective chart abstraction was conducted. HNC patients who had completed an MD Anderson Symptom Inventory-Head and Neck (MDASI-HN) questionnaire and also had clinician graded oral intake ratings (Functional Oral Intake Scale [FOIS]) were included. Correlation coefficients were computed. FOIS scores were regressed on MDASI-HN symptom items using stepwise backwards elimination for multivariate models. One hundred and fifty-two survey pairings were included in the analysis (median 44months follow-up, range 7-198). Per FOIS, 28% of survivors maintained a total oral diet with no restrictions, 67% reported a restricted oral diet (without tube), 3% were partially tube-dependent with some oral intake, and 2% were NPO. Of the 22 symptom items, the most severe items in decreasing order were dry mouth, difficulty swallowing\chewing, problems with mucus, tasting food, and choking/coughing. Significant bivariate correlations, after Bonferroni correction for multiple comparisons, were present for 8 of 22 symptoms with FOIS. On multivariate analysis, symptom severity for difficulty swallowing and problems with teeth/gums remained significantly associated with FOIS. Oral intake in HNC survivorship is a multidimensional issue and functional outcome that is impacted not only by dysphagia but also by dental status. Symptom drivers of oral intake likely differ in acute survivorship. Nonetheless, these findings highlight the lack of specificity in this end point and also the need for multidisciplinary supportive care to optimize oral intake in survivors.