• cancer
• data visualization
• pain management
• palliative care
• patient and caregiver dyads
• remote health monitoring and digital health

• HIV
• HIV prevention
• PrEP
• apps
• data visualization
• digital health
• human immunodeficiency virus
• mHealth
• men who have sex with men
• patient-reported health information
• preexposure prophylaxis
• usability

• Humans
• Male
• Mobile Applications/statistics & numerical data
• Pre-Exposure Prophylaxis/methods
• Pre-Exposure Prophylaxis/statistics & numerical data
• Homosexuality, Male/statistics & numerical data
• Adult
• Young Adult
• HIV Infections/prevention & control
• Sexual Behavior/statistics & numerical data
• Telemedicine
• Medication Adherence
• Adolescent

• U01 PS005229 NCHHSTP CDC HHS

• Readiness and Enablement Index for Health Technology
• clinical training
• clinician
• data analysis
• data representation
• health care system
• health professional
• patient-reported outcome
• text vignette
• understanding

• Humans
• Patient Reported Outcome Measures
• Female
• Male
• Health Literacy
• Middle Aged
• Adult
• Aged
• Pulmonary Disease, Chronic Obstructive/psychology
• Surveys and Questionnaires

• cancer
• clinical trials
• patients
• podcast
• quality of life
• safety

• Humans
• Quality of Life
• Neoplasms/therapy
• Neoplasms/psychology
• Clinical Trials as Topic
• Patient Safety
• Comprehension

• Daiichi Sankyo Company

• Health-related quality of life
• Patient communication
• Patient-reported outcome measures
• Personalized care
• Quality of care

• 05160472110001 ZonMw
• 05160472110001 ZonMw

• Cancer
• Co-creation
• Medical infographics
• Patient – Healthcare professional communication
• Symptom communication

• Report
• stakeholder
• surgery

• Humans
• Child
• New Zealand
• Parents
• Specialties, Surgical
• Australia
• Cardiac Surgical Procedures

• clinical decision support systems
• data visualization
• electronic health records
• nursing
• standardized nursing terminology

• Humans
• Decision Support Systems, Clinical
• Language
• Electronic Health Records
• Research Design
• Nurses

• R01 NR018416 NINR NIH HHS
• National Institutes of Health
• National Institute of Nursing Research

• Data displays
• comprehension
• decision-making
• graphic
• systematic review
• visual

• Humans
• Data Display
• Health Personnel
• Physicians
• PubMed

• FD999999 Intramural FDA HHS

• Activity trackers
• BIA weighing scales
• Food diaries
• Inflammation
• Kynurenine pathway
• PROFILES registry
• Patient reported outcomes
• Thyroid cancer

• Advertising
• Clinical trials
• Content analysis
• Data displays
• Healthcare providers
• Prescription drugs

• Humans
• Prescription Drugs
• Advertising
• Data Display
• Drug Industry
• Health Personnel

• FD999999 Intramural FDA HHS

• epidemiology
• health & safety
• public health
• quality in health care
• stroke

• Australia
• Feedback
• Health Facilities
• Hospitals
• Humans
• Patient Reported Outcome Measures

• Victorian Agency for Health Information (VAHI)
• NHMRC Research Fellowship support

• Cohort retention
• Colorectal cancer
• Individual feedback report
• Patient-reported outcomes
• Prospective Dutch ColoRectal Cancer Cohort
• Quality of life

• Cohort Studies
• Colorectal Neoplasms/complications
• Colorectal Neoplasms/therapy
• Feedback
• Humans
• Patient Reported Outcome Measures
• Prospective Studies

• Data visualization
• Patient reported outcome measures
• Shared decision-making
• Systematic review

There has been a cultural shift toward patient engagement in health, with a growing demand from patients to access their results.

The Lymphoma Intervention (LIVE) trial is conducted to examine the impact of return of individual patient-reported outcome (PRO) results and a web-based self-management intervention on psychological distress, self-management, satisfaction with information, and health care use in a population-based setting.

Return of PRO results included comparison with age- and sex-matched peers and was built into the Patient-Reported Outcomes Following Initial Treatment and Long-Term Evaluation of Survivorship registry. The self-management intervention is an adaptation of a fully automated evidence-based intervention for breast cancer survivors. Patients with lymphoma who completed the web-based questionnaire were equally randomized to care as usual, return of PRO results, and return of PRO results plus self-management intervention. Patients completed questionnaires 9 to 18 months after diagnosis (T0; n=227), 4 months (T1; n=190), 12 months (T2; n=170), and 24 months (T3; n=98).

Of all invited patients, 51.1% (456/892) responded and web-based participants (n=227) were randomly assigned to care as usual (n=76), return of PRO results (n=74), or return of PRO results and access to Living with lymphoma (n=77). Return of PRO results was viewed by 76.7% (115/150) of those with access. No statistically significant differences were observed for psychological distress, self-management, satisfaction with information provision, and health care use between patients who received PRO results and those who did not (P>.05). Use of the self-management intervention was low (2/76, 3%), and an effect could therefore not be determined.

Return of individual PRO results seems to meet patients’ wishes but had no beneficial effects on patient outcome. No negative effects were found when individual PRO results were disclosed, and the return of individual PRO results can therefore be safely implemented in daily clinical practice.

Netherlands Trial Register NTR5953; https://www.trialregister.nl/trial/5790

RR2-10.1186/s13063-017-1943-2

• lymphoma
• patient-reported outcomes
• randomized controlled trial
• return of individual results
• self-management

General population normative data for the European Organisation for Research and Treatment of Cancer (EORTC) QLQ-C30 questionnaire facilitates interpretation of data assessed from cancer patients. This study aims to present normative data of the general Spanish population.

Data were obtained from a prior larger study collecting EORTC QLQ-C30 norm data across 15 countries. Data were stratified by sex and age groups (18–39, 40–49, 50–59, 60–69 and > 70 years). Sex and age distribution were weighted according to population distribution statistics. Sex- and age-specific normative values were analysed separately, as were participants with versus those without health conditions. Multiple linear regression was used to estimate the association of each of the EORTC QLQ-C30 scales with the determinants age, sex, sex-by-age interaction term, and health condition.

In total, 1,165 Spanish individuals participated in the study. Differences were found by sex and age. The largest sex-related differences were seen in fatigue, emotional functioning, and global QOL (Quality of Life), favouring men. The largest age differences were seen in emotional functioning, insomnia, and pain, with middle-aged groups having the worst scores. Those > 60 years old scored better than those < 60 years old on all scales except for physical functioning. Participants with no health conditions scored better in all QLQ-C30 domains.

The present study highlights differences in HRQOL between specific sex/age strata and especially between people with and without a health condition in the general Spanish population. These factors must be considered when comparing general population HRQOL data with that of cancer patients.

The online version contains supplementary material available at 10.1186/s12955-021-01820-x.

• EORTC QLQ-C30
• General population
• Normative values
• Quality of life
• Questionnaire
• Spain

• Computer adaptive design
• Electronic patient-reported outcome
• Outcomes evaluation
• Patient reported outcome measures

• Clinical audit
• audit
• health services administration& management
• public health

• Delivery of Health Care
• Feedback
• Health Personnel
• Health Services
• Humans
• Patient Reported Outcome Measures
• Quality of Life

• health-related quality of life
• immunotherapy
• measures
• patients with cancer
• real world
• social media use

The European Organisation for Research and Treatment of Cancer (EORTC) QLQ-C30 is a widely used cancer-specific questionnaire assessing 15 domains of health-related quality of life (HRQoL). Our aim was to facilitate the interpretation of scores on this questionnaire by providing Austrian normative data based on a general population sample.

The calculation of normative data was based on the EORTC QLQ-C30 data collected from an Austrian general population sample that was part of an international online panel study on the development of European normative data. Data reported herein were stratified and weighted by age and sex. Normative data were calculated for all 15 HRQoL domains of the EORTC QLQ-C30. For precise predictions of EORTC QLQ-C30 scores, a regression model based on sex, age and the presence of health conditions was built.

The Austrian sample comprised 1002 Austrian participants (50.1% female, 51.4% when weighted by age and sex based on United Nation statistics). The mean age was 53.7 years (weighted: 47.7 years) and 53.6% (weighted: 47.4%) reported at least one health condition. Men reported better physical (Cohen’s d = 0.17) and emotional (Cohen’s d = 0.17) functioning as well as less fatigue (Cohen’s d = 0.18) and insomnia (Cohen’s d = 0.25) compared with women. Younger individuals (< 40 years) reported less dyspnea (Cohen’s d = 0.61) and pain (Cohen’s d = 0.51), whereas older individuals (≥60 years) reported better emotional functioning (Cohen’s d = 0.55).

We present Austrian normative data for the EORTC QLQ-C30. Differences by age and sex are mostly in line with the findings of other European normative studies. The Austrian population sample shows higher HRQoL and lower morbidity compared with other European countries. The normative data in this study will facilitate the interpretation of EORTC QLQ-C30 scores in oncological practice and research at a national and international level (including cross-cultural comparisons).

• Austria
• EORTC QLQ-C30
• General population
• Normative data
• Oncology
• Patient-reported outcome measures
• Quality of life

Quality of life (QoL) assessments, or patient-reported outcome measures (PROMs), are becoming increasingly important in health care and have been associated with improved decision making, higher satisfaction, and better outcomes of care. Some physicians and patients may find questionnaires too burdensome; however, this issue could be addressed by making use of computerized adaptive testing (CAT). In addition, making the questionnaire more interesting, for example by providing graphical and contextualized feedback, may further improve the experience of the users. However, little is known about how shorter assessments and feedback impact user experience.

We conducted a controlled experiment to assess the impact of tailored multimodal feedback and CAT on user experience in QoL assessment using validated PROMs.

We recruited a representative sample from the general population in the United Kingdom using the Oxford Prolific academic Web panel. Participants completed either a CAT version of the World Health Organization Quality of Life assessment (WHOQOL-CAT) or the fixed-length WHOQOL-BREF, an abbreviated version of the WHOQOL-100. We randomly assigned participants to conditions in which they would receive no feedback, graphical feedback only, or graphical and adaptive text-based feedback. Participants rated the assessment in terms of perceived acceptability, engagement, clarity, and accuracy.

We included 1386 participants in our analysis. Assessment experience was improved when graphical and tailored text-based feedback was provided along with PROMs (Δ=0.22, P<.001). Providing graphical feedback alone was weakly associated with improvement in overall experience (Δ=0.10, P=.006). Graphical and text-based feedback made the questionnaire more interesting, and users were more likely to report they would share the results with a physician or family member (Δ=0.17, P<.001, and Δ=0.17, P<.001, respectively). No difference was found in perceived accuracy of the graphical feedback scores of the WHOQOL-CAT and WHOQOL-BREF (Δ=0.06, P=.05). CAT (stopping rule [SE<0.45]) resulted in the administration of 25% fewer items than the fixed-length assessment, but it did not result in an improved user experience (P=.21).

Using tailored text-based feedback to contextualize numeric scores maximized the acceptability of electronic QoL assessment. Improving user experience may increase response rates and reduce attrition in research and clinical use of PROMs. In this study, CAT administration was associated with a modest decrease in assessment length but did not improve user experience. Patient-perceived accuracy of feedback was equivalent when comparing CAT with fixed-length assessment. Fixed-length forms are already generally acceptable to respondents; however, CAT might have an advantage over longer questionnaires that would be considered burdensome. Further research is warranted to explore the relationship between assessment length, feedback, and response burden in diverse populations.

• WHOQOL
• computer-adaptive testing
• feedback
• outcome assessment
• patient-reported outcome measures
• psychometrics
• quality of life

• visualization
• symptom science
• communication

• Attitude to Computers
• Computer Graphics
• Health Personnel
• Humans
• Patients
• Symptom Assessment
• User-Computer Interface

• P30 NR016587 NINR NIH HHS
• T32 NR007969 NINR NIH HHS
• K99 NR017651 NINR NIH HHS

• display
• patient-reported outcome
• pediatric cancer

Providing feedback to patients on their patient-reported outcomes (PROs) can help patients in monitoring their functioning and symptoms and may help empower them.

The objective of this study was to investigate whether patients with lymphoma wished to receive PRO feedback, including the option to compare their scores with those of their peers, and how this feedback was evaluated.

We invited 64 patients participating in a lymphoma cohort who were eligible for a follow-up questionnaire and gave them the option to receive PRO feedback. Patients completed questions about health-related quality of life (HRQoL) and symptoms. PRO feedback was provided via bar charts.

Of the 64 invited patients, 45 participated (response rate 70%) and 36 of those (80%) wished to receive PRO feedback. The vast majority (34/36, 94%) compared their scores with those of a lymphoma reference cohort, and 64% (23/36) compared their score with those of a normative population without cancer. All patients wished to receive feedback on their HRQoL, and 29 (81%) to 33 (92%) wanted feedback on their functioning, fatigue, neuropathy, anxiety, and depressive symptoms. Of the 36 participants wishing to receive PRO feedback, 35 (97%) viewed it as being useful, with reassurance and knowledge about their own functioning in relation to what is “normal” being the most frequently mentioned reasons.

A high number of patients with lymphoma wished to receive PRO feedback. Patients reported the comparison of their scores versus a lymphoma reference cohort as most valuable. Further research should investigate whether PRO feedback could increase empowerment and possibly improve HRQoL.

• access to information
• health-related quality of life
• lymphoma
• personalized feedback
• population-based research
• self-care

• adult palliative care
• health informatics
• patient reported outcomes
• sarcoma

• Adult
• Antineoplastic Agents, Alkylating/therapeutic use
• Computers, Handheld
• Dioxoles/therapeutic use
• Feasibility Studies
• Female
• Humans
• Male
• Palliative Care
• Patient Reported Outcome Measures
• Patient Satisfaction
• Proof of Concept Study
• Quality of Life
• Sarcoma/physiopathology
• Sarcoma/psychology
• Sarcoma/therapy
• Severity of Illness Index
• Tetrahydroisoquinolines/therapeutic use
• Trabectedin

• PharmMar S.A., Spain

Audit and feedback on professional practice and health care outcomes are the most often used interventions to change behaviour of professionals and improve quality of health care. However, limited information is available regarding preferred feedback for patients, professionals and health insurers.

Investigate the (differences in) preferences of receiving feedback between stakeholders, using the Dutch Head and Neck Audit as an example.

A total of 37 patients, medical specialists, allied health professionals and health insurers were interviewed using semi‐structured interviews. Questions focussed on: “Why,” “On what aspects” and “How” do you prefer to receive feedback on professional practice and health care outcomes?

All stakeholders mentioned that feedback can improve health care by creating awareness, enabling self‐reflection and reflection on peers or colleagues, and by benchmarking to others. Patients prefer feedback on the actual professional practice that matches the health care received, whereas medical specialists and health insurers are interested mainly in health care outcomes. All stakeholders largely prefer a bar graph. Patients prefer a pie chart for patient‐reported outcomes and experiences, while Kaplan‐Meier survival curves are preferred by medical specialists. Feedback should be simple with firstly an overview, and 1‐4 times a year sent by e‐mail. Finally, patients and health professionals are cautious with regard to transparency of audit data.

This exploratory study shows how feedback preferences differ between stakeholders. Therefore, tailored reports are recommended. Using this information, effects of audit and feedback can be improved by adapting the feedback format and contents to the preferences of stakeholders.

• audit and feedback
• feedback preferences
• head and neck cancer
• health care quality improvement
• integrated health care
• quality indicators

Patients with lymphoma are at risk of experiencing adverse physical and psychosocial problems from their cancer and its treatment. Regular screening of these symptoms by the use of patient-reported outcomes (PROs) could increase timely recognition and adequate symptom management. Moreover, self-management interventions intend to enhance knowledge and skills and empower patients to better manage their disease and related problems. The objective of the Lymphoma InterVEntion (LIVE) trial is to examine whether feedback to patients on their PROs and access to a web-based, self-management intervention named Living with lymphoma will increase self-management skills and satisfaction with information, and reduce psychological distress.

The LIVE randomised controlled trial consists of three arms: (1) standard care, (2) PRO feedback, and (3) PRO feedback and the Living with lymphoma intervention. Patients who have been diagnosed with Hodgkin lymphoma, non-Hodgkin lymphoma, including chronic lymphocytic leukaemia, as registered in the Netherlands Cancer Registry in various hospitals will be selected for participation. Patients are invited via their haemato-oncologist 6 to 15 months after diagnosis. The PRO feedback includes a graphical overview of patients’ own symptom and functioning scores and an option to compare their scores with those of other patients with lymphoma and a normative population of the same age and sex. The Living with lymphoma intervention is based on cognitive behavioural therapy components and includes information, assignments, assessments, and videos. Changes in outcomes from baseline to 16 weeks, 12, and 24 months post intervention will be measured. Primary outcomes are self-management skills, satisfaction with information, and psychological distress. Secondary outcomes are health-related quality of life, illness perceptions, fatigue, and health care use.

The results of the LIVE trial will provide novel insights into whether access to PRO feedback and the Living with lymphoma intervention will be effective in increasing self-management skills and satisfaction with information, and reducing distress. The LIVE trial is embedded in a population-based registry, which provides a unique setting to ascertain information on response, uptake, and characteristics of patients with lymphoma in web-based intervention(s). When effective, PRO feedback and Living with lymphoma could serve as easily and widely accessible interventions for coping with lymphoma.

Netherlands Trial Register, identifier NTR5953. Registered on 14 July 2016.

The online version of this article (doi:10.1186/s13063-017-1943-2) contains supplementary material, which is available to authorized users.

• Information provision
• Intervention
• Lymphoma
• PRO feedback
• Patient-reported outcomes
• Population-based
• Psychological distress
• Randomised controlled trial
• Self-management

Patient‐reported outcomes (PROs) (eg, symptoms, functioning) can inform patient management. However, patients and clinicians often have difficulty interpreting score meaning. The authors tested approaches for presenting PRO data to improve interpretability.

This mixed‐methods study included an Internet survey of cancer patients/survivors, oncology clinicians, and PRO researchers circulated via snowball sampling, plus individual in‐person interviews. Clinical importance was conveyed using 3 approaches (presented in random order): normal score range shaded green, concerning scores circled in red, and red threshold lines indicating normal versus concerning scores. Versions also tested 2 approaches to score directionality: higher = more (better for function, worse for symptoms) and higher = better for both function and symptoms. Qualitative data from online comments and in‐person interviews supplemented quantitative results on interpretation accuracy, clarity, and the “most useful” format.

The survey included 1113 respondents: 627 survivors, 236 clinicians, and 250 researchers, plus 10 patients and 10 clinicians who were purposively sampled interviewees. Interpretation accuracy ranged from 53% to 100%. The formats in which higher = better were interpreted more accurately versus those in which higher = more (odds ratio [OR], 1.30; 95% confidence interval [CI], 1.07‐1.58) and were more likely to be rated “very”/“somewhat” clear (OR, 1.39; 95% CI, 1.13‐1.70) and “very” clear (OR, 1.36; 95% CI, 1.18‐1.58). Red circle formats were interpreted more accurately than green‐shaded formats when the first format presented (OR, 1.29; 95% CI, 1.00‐1.65). Threshold‐line formats were more likely to be rated “very” clear than green‐shaded (OR, 1.43; 95% CI, 1.19‐1.71) and red‐circled (OR, 1.22, 95% CI, 1.02‐1.46) formats. Threshold lines were most often selected as “most useful.”

The current results support presenting PRO data with higher = better directionality and threshold lines indicating normal versus concerning scores. Cancer 2017;123:1848–1859. © 2017 The Authors. Cancer published byWiley Periodicals, Inc. on behalf of American Cancer Society. This is an open access article under the terms of the Creative Commons Attribution‐NonCommercial‐NoDerivs License, which permits use and distribution in any medium, provided the original work is properly cited, the use is non‐commercial and no modifications or adaptations aremade.

Patient‐reported outcomes (PROs) (eg, symptoms, well being) can be used for patient management and monitoring. This study informs best practices for displaying PRO results so that patients and clinicians can understand what the scores mean.

• cancer
• clinical practice
• interpretation
• patient management
• patient-reported outcomes

• Cancer
• EORTC QLQ-C30
• Graphic display of data
• Patient-centred care
• Patient-reported outcomes
• Quality of life

• Adolescent
• Adult
• Aged
• Aged, 80 and over
• Brain Neoplasms/psychology
• Comprehension
• Computer Graphics
• Fatigue
• Female
• Health Literacy
• Humans
• Interviews as Topic
• Longitudinal Studies
• Male
• Middle Aged
• Patient Reported Outcome Measures
• Qualitative Research
• Quality of Life
• Surveys and Questionnaires

• Daily clinical routine
• EORTC Quality of Life Group
• Guideline
• Implementation
• Manual
• Neoplasms
• Patient-reported outcomes
• Quality of life

• Europe
• Humans
• Neoplasms
• Patient Reported Outcome Measures
• Practice Guidelines as Topic
• Quality of Life

• Cancer
• Need assessment
• Pain
• Patient-reported outcome
• Questionnaire
• Screening

• Internet
• chronic disease
• health education
• neoplasms
• power (psychology)
• review
• technology