Development of consensus-based considerations for use of adult proxy reporting: an ISOQOL task force initiative.

AIMS: Many large-scale population-based surveys, research studies, and clinical care allow for inclusion of proxy reporting as a strategy to collect outcomes when patients are unavailable or unable to provide reliable self-report. Prior work identified an absence of methodological guidelines regarding proxy reporting in adult populations, including who can serve as a proxy, and considerations for data collection, analysis, and reporting. The primary objective of this work by the ISOQOL Proxy Task Force was to review documents and clinical outcome assessment measures with respect to proxy reporting and to develop, through consensus, considerations for proxy reporting. METHODS: We assembled an international group with clinically relevant and/or methodological expertise on proxy use in adult populations. We conducted a targeted review of documentation based on regulatory, non-regulatory, professional society, and individual measure sources. Using a standardized collection form, proxy-related information was extracted from each source including definitions of a proxy, characteristics of a proxy, domains addressable or addressed by a proxy, and observer-reporting. RESULTS: The definition of proxy was inconsistent across 39 sources, except regulatory documents which defined a proxy as a person other than the patient who reports on an outcome as if she/he were the patient. While proxy report was discouraged in regulatory documentation, it was acknowledged there were instances where self-report was impossible. Many documentation sources indicated proxies would be well-justified in certain contexts, but did not indicate who could act as a proxy, when proxies could be used, what domains of patient health they could report on, or how data should be reported. Observer-reported outcomes were typically defined as those based on observed behaviors, however there was not a consistent differentiation between proxy and observer reporting. Based on information extracted from these resources, we developed a checklist of considerations when including proxy-reported measures or using proxies in study design, data collection, analysis, interpretation and reporting of proxy reported data. CONCLUSION: Our targeted review highlights a lack of clarity in capturing, interpreting and reporting data from proxies in adult populations. We provide a checklist of considerations to assist researchers and clinicians with including proxies in research studies and clinical care. Lastly, our review identified areas where further guidance and future research are necessary.

Psychometric performance of the Chichewa versions of the EQ-5D-Y-3L and EQ-5D-Y-5L among healthy and sick children and adolescents in Malawi.

OBJECTIVES: The EuroQol Group has developed an extended version of the EQ-5D-Y-3L with five response levels for each of its five dimensions (EQ-5D-Y-5L). The psychometric performance has been reported in several studies for the EQ-5D-Y-3L but not for the EQ-5D-Y-5L. This study aimed to psychometrically evaluate the EQ-5D-Y-3L and EQ-5D-Y-5L Chichewa (Malawi) versions. METHODS: The EQ-5D-Y-3L, EQ-5D-Y-5L and PedsQL™ 4.0 Chichewa versions were administered to children and adolescents aged 8-17 years in Blantyre, Malawi. Both of the EQ-5D-Y versions were evaluated for missing data, floor/ceiling effects, and validity (convergent, discriminant, known-group and empirical). RESULTS: A total of 289 participants (95 healthy, and 194 chronic and acute) self-completed the questionnaires. There was little problem with missing data (< 5%) except in children aged 8-12 years particularly for the EQ-5D-Y-5L. Ceiling effects was generally reduced in moving from the EQ-5D-Y-3L to the EQ-5D-Y-5L. For both EQ-5D-Y-3L and EQ-5D-Y-5L, convergent validity tested with PedsQL™ 4.0 was found to be satisfactory (correlation ≥ 0.4) at scale level but mixed at dimension /sub-scale level. There was evidence of discriminant validity (p > 0.05) with respect to gender and age, but not for school grade (p < 0.05). For empirical validity, the EQ-5D-Y-5L was 31-91% less efficient than the EQ-5D-Y-3L at detecting differences in health status using external measures. CONCLUSIONS: Both versions of the EQ-5D-Y-3L and EQ-5D-Y-5L had issues with missing data in younger children. Convergent validity, discriminant validity with respect to gender and age, and known-group validity of either measures were also met for use among children and adolescents in this population, although with some limitations (discriminant validity by grade and empirical validity). The EQ-5D-Y-3L seems particularly suited for use in younger children (8-12 years) and the EQ-5D-Y-5L in adolescents (13-17 years). However, further psychometric testing is required for test re-test reliability and responsiveness that could not be carried out in this study due to COVID-19 restrictions.

Lung Herniation Associated With Crack Cocaine Use: An Uncommon Cause of Chest Pain.

Lung herniation is an uncommon clinical entity characterized by protrusion of pulmonary tissue through an area of weakness in the chest wall. We present the case of a 56-year-old man with a history of chronic obstructive pulmonary disease (COPD) and crack-cocaine use who presented to the emergency department due to left-sided lateral chest pain, as well as a two-week history of cough, shortness of breath, and wheezing. Chest imaging revealed a contusion on the left flank and intercostal widening with a left-sided pulmonary herniation between ribs 8 and 9. Cardiothoracic surgery was consulted for assessment of pulmonary herniation and recommended conservative management. His pain was managed with multimodal analgesia and the patient was deemed stable for discharge. At outpatient follow-up two weeks later, his pain was well-controlled. To our knowledge, this is the first reported case of pulmonary herniation in which crack cocaine use is implicated as a contributing cause. The outcome achieved in our case supports the use of conservative management with analgesia as a valid strategy for select patients with lung herniation.

Cross-Cultural Adaptation of the Beta EQ-5D-Y-5L Into Chichewa (Malawi).

OBJECTIVES: The EuroQol Group is developing a new EQ-5D-Y-5L version with 5 severity levels for each of the 5 dimensions. The 5 severity levels describe different health severities and there is a potential for severity level inversion. This article aims to report the process of cross-cultural adaptation of the beta EQ-5D-Y-5L into Chichewa (Malawi) using the card ranking exercise, which has been added to the EQ-5D-Y-5L translation protocol. METHODS: To assess the correct hierarchical ordering of severity levels, the adaptation followed the EQ-5D-Y-5L translation protocol. Cognitive interviews were undertaken to establish conceptual equivalence. Thereafter, 4 iterations of ranking exercises were conducted, leading to amendments of the translated Chichewa version to arrive at a final version. RESULTS: The iterations were assessed by 18 participants aged 8 to 14 years. Health proved to be a difficult concept to translate as was "discomfort." Cognitive interviews identified further conceptual issues, particularly with the "looking after myself" dimension. Considerations about lack of soap or water indicated that some children did not fully comprehend this dimension as being about the ability to wash and dress themselves. The iterative card ranking exercise detected severity level inversion between "a little bit" and "some," and between "a lot" and "extreme" and alternative Chichewa words/phrases were then tested. Ultimately, the intended hierarchical severity ranking was achieved and an acceptable Chichewa version was produced. CONCLUSIONS: Conceptual and linguistic equivalence to the English EQ-5D-Y-5L was established for the Chichewa EQ-5D-Y-5L version. The card ranking exercise was instrumental in correcting severity level inversion and supporting the comprehensible translation.

A Systematic Literature Review of Preference-Based Health-Related Quality-of-Life Measures Applied and Validated for Use in Childhood and Adolescent Populations in Sub-Saharan Africa.

OBJECTIVES: Consideration of health status in children and adolescents now includes broader concepts such as health-related quality-of-life (HRQoL). Globally, there is a need for relevant preference-based HRQoL measures (PBMs) for use in children and adolescents, yet measurement of HRQoL in these groups presents particular challenges. This article systematically reviews the available generic childhood PBMs and their application and cross-cultural validation in sub-Saharan African (sSA). METHODS: A systematic review of published literature from January 1, 1990, to February 8, 2017, was conducted using MEDLINE (through OvidSP), EMBASE (OvidSP), EconLit (EBSCOhost), PsycINFO, Web of Science, and PubMed. RESULTS: A total of 220 full-text articles were included in a qualitative synthesis. Ten generic childhood PBMs were identified, of which 9 were adapted from adult versions and only 1 was developed specifically for children. None of the measures were originally developed in sSA or other resource-constrained settings. The Health Utilities Index Mark 3 (HUI3) and the EQ-5D-Y were the only measures that had been applied in sSA settings. Further, the HUI3 and the EQ-5D-Y were the only generic childhood PBM that attempted to establish cross-cultural validation in sSA. Five of the 6 of these validation studies were conducted using the EQ-5D-Y in a single country, South Africa. CONCLUSIONS: The findings show that application of generic childhood PBMs in sSA settings has hitherto been limited to the HUI3 and EQ-5D-Y. Most adaptations of existing measures take an absolutist approach, which assumes that measures can be used across cultures. Nevertheless, there is also need to ensure linguistic and conceptual equivalence and undertake validation across a range of sSA cultural contexts.

Assessment of a patient-reported outcome measure in men with prostate cancer who had radical surgery: a Rasch analysis.

OBJECTIVES: To evaluate the psychometric properties (and identify specific anomalies to be resolved) of urinary and sexual function scales of the Symptom Tracking and Reporting (STAR) instrument for use in clinical practice with individual men using Rasch analysis. DESIGN: Prospective cohort study. SETTING: 9 UK surgery centres in secondary care. PARTICIPANTS: 403 men diagnosed with prostate cancer and completed at least one questionnaire immediately before and at 1 or 3 months after radical prostatectomy. PRIMARY AND SECONDARY OUTCOMES: STAR instrument before surgery and 1 and 3 months afterwards. RESULTS: Neither scale fitted the Rasch model (both scales p<0.001). Both urinary (seven items) and sexual function (six items) had disordered thresholds, suggesting response categories are not working as intended. Both scales (three urinary items; five sexual function items) showed problems with item fit (large fit residuals, significant χ2, an inspection of item characteristic curves). Both scales showed items that were unstable over time (differential item functioning (DIF) by time). Both scales (four pairs of items in each scale) showed local response dependency (residual correlations >0.2 above the average). Internal consistency was acceptable at the group level for both scales. Targeting was poor for both scales, indicating an inadequate match between the location of items and the distribution of the patients, suggesting that the underlying constructs that the scales purport to measure are not clear. CONCLUSION: Using Rasch analysis as a diagnostic tool, we identified that both the urinary and the sexual function scales have issues that need to be resolved before STAR can be used with confidence in clinical practice. The sexual function scale, in particular, is unlikely to provide precise estimates for the outcomes experienced by men after radical prostatectomy. These results demonstrate the need to evaluate the suitability of any patient-reported outcome measure before implementation in routine clinical practice, preferably using modern psychometric methods.

Impact of a system-wide multicomponent intervention on administrative diagnostic coding for delirium and other cognitive frailty syndromes: observational prospective study.

BACKGROUND: We determined the impact of a system-wide multicomponent intervention to improve recognition and documentation of cognitive frailty syndromes on hospital administrative coding for delirium. METHODS: A multicomponent intervention including introduction of structured patient assessment including cognitive/delirium screen, regular audit/feedback and educational seminars was undertaken (2012-17). Sensitivity and specificity of administrative International Classification of Diseases, 10th revision (ICD-10) delirium codes for the gold standard of prospectively clinically diagnosed delirium were calculated in consecutive patients admitted to acute medicine over five 8-week cycles (2010-18). RESULTS: Among 1,281 consecutive unselected admissions to acute medicine overall (mean / standard deviation age = 70.0/19.2 years; n=615 (48.0%) male), 320 had clinical delirium diagnosis (n=220 delirium only; n=100 delirium on dementia). Sensitivity of delirium coding increased from 12.8% (95% confidence interval (CI) 5.6-26.7) in 2010 to 60.2% (95% CI 50.1-69.7; ptrend<0.0001) in 2018 while specificity remained at >99% throughout. CONCLUSION: A multicomponent intervention increased sensitivity of hospital administrative diagnostic coding for delirium almost six-fold without increasing the false positive diagnosis rate.

Measuring violence perpetration: Stability of teachers' self-reports before and after an anti-violence training in Cote d'Ivoire.

BACKGROUND: Epidemiological studies of interpersonal violence commonly use self-reported violence perpetration as an outcome measure, but few studies have investigated the stability of and influences on self-reports. OBJECTIVE: To assess changes in teachers' self-reported use of physical violence against students before and after a one-day violence prevention training, and factors associated with changed reports in Cote d'Ivoire. METHODS: Before and after the training, 157 teachers completed surveys containing 32 questions adapted from the ICAST-CI. Changes in physical violence usage were summarized over lifetime, past school term, and past-week timeframes, and the consistency in responses assessed via intraclass correlation coefficients (3,k), percent agreement, and kappa statistics. Factors associated with changed reports were assessed using robust multiple linear regression with 1,000 bootstrapped replications. RESULTS: Although reports before and after the training should have remained constant, the proportion of teachers reporting 1+ act of violence dropped substantially (lifetime: 73% to 47%). Most teachers (73%) changed 1+ response. Kappa for individual items showed ranging disagreement (lifetime: 0.275-0.795). Variables significantly associated with greater numbers of changed reports included: greater mental health distress (lifetime: beta = 1.061, 95% CI = 0.229, 2.404), older age (past school term: beta = 0.067, 95% CI = 0.018, 0.113); and variables targeted during training, including increasing awareness of consequences of violence (past week: beta = 0.241, 95% CI = 0.046, 0.435) and decreasing acceptance of physical discipline practices in schools (past school term: beta= -0.169, 95% CI= -0.338, -0.045). CONCLUSIONS: Interpreting self-reports of violence perpetration requires caution. Formal investigations into reliability and validity of self-reported violence perpetration and victimization are needed.

DEMQOL and DEMQOL-Proxy: a Rasch analysis among those diagnosed with dementia.

BACKGROUND: In previous work we concluded that DEMQOL and DEMQOL-Proxy can provide robust measurement of HRQL in dementia when scores are derived from analysis using the Rasch model. As the study sample included people with mild cognitive impairment, we undertook a replication study in the subsample with a diagnosis of dementia (PWD). PWD constitute the population for whom DEMQOL and DEMQOL-Proxy were originally developed. METHODS: We conducted a Rasch model analysis using the RUMM2030 software to re-evaluate DEMQOL (441 PWD) and DEMQOL-Proxy (342 family carers). We evaluated scale to sample targeting, ordering of item thresholds, item fit to the model, and differential item functioning (sex, age, severity, relationship), local independence, unidimensionality and reliability. RESULTS: For both DEMQOL and DEMQOL-Proxy, results were highly similar to the results in the original sample. We found the same problems with content and response options. CONCLUSIONS: DEMQOL and DEMQOL-Proxy can provide robust measurement of HRQL in people with a diagnosis of dementia when scores are derived from analysis using the Rasch model. As in the wider sample, the problems identified with content and response options require qualitative investigation in order to improve the scoring of DEMQOL and DEMQOL-Proxy.

Caregiver burden and quality of life 2 years after attendance at a memory clinic.

OBJECTIVES: We aimed to describe (1) the burden and health-related quality of life (HRQL) of informal caregivers of new patients attending a memory assessment service (MAS), (2) changes in these outcomes over 2 years, and (3) satisfaction with services. METHODS: Informal caregivers of patients attending one of 73 MASs throughout England completed questionnaires at the patient's first appointment, and 6 and 12 months later. Participants from 30 of these MASs were also followed up at 24 months. Questionnaires covered caregivers' sociodemographic characteristics, Zarit Burden Interview, EQ-5D-3L, and satisfaction with services. We used multivariable linear regression to assess relationships between burden, HRQL, and caregiver and patient characteristics. RESULTS: Of 1020 caregivers at baseline, 569 were followed up at 6 months, 452 at 12 months, and 187 at 24 months. There was a small increase in caregiver burden over 2 years (effect size 0.30 SD). These changes were not associated with most caregiver or patient characteristics, except socio-economic deprivation, which was associated with larger increases in burden at 2 years. Caregivers' HRQL was weakly associated with burden and showed a small reduction over time (0.2 SD). Most caregivers were satisfied with services, but caregivers who were not satisfied with the services they received reported greater increases in burden. CONCLUSIONS: Increases in caregiver burden and reductions in HRQL appear to be small over the first 2 years after attending a MAS. However, the longer term impact on caregivers and those they care for needs investigating, as do strategies to reduce their burden.

Caregiver burden and quality of life two years after attendance at a memory clinic.

OBJECTIVES: We aimed to describe 1) the burden and HRQL of informal caregivers of new patients attending a memory assessment service (MAS), 2) changes in these outcomes over two years and 3) satisfaction with services. METHODS: Informal caregivers of patients attending one of 73 MASs throughout England completed questionnaires at the patient's first appointment, and 6 and 12 months later. Participants from 30 of these MASs were also followed up at 24 months. Questionnaires covered caregivers' sociodemographic characteristics, Zarit Burden Interview, EQ-5D-3L and satisfaction with services. We used multivariable linear regression to assess relationships between burden, HRQL and caregiver and patient characteristics. RESULTS: Of 1020 caregivers at baseline, 569 were followed up at 6 months, 452 at 12 months and 187 at 24 months. There was a small increase in caregiver burden over two years (effect size 0.30 SD). These changes were not associated with most caregiver or patient characteristics, except socioeconomic deprivation which was associated with larger increases in burden at two years. Caregivers' HRQL was weakly associated with burden and showed a small reduction over time (0.2 SD). Most caregivers were satisfied with services but caregivers who were not satisfied with the services they received reported greater increases in burden. CONCLUSIONS: Increases in caregiver burden and reductions in HRQL appear to be small over the first two years after attending a MAS. However, the longer-term impact on caregivers and those they care for needs investigating, as do strategies to reduce their burden.

A novel method of proxy reporting questionnaire based measures of health-related quality of life of people with dementia in residential care: a psychometric evaluation.

BACKGROUND: In research in residential care, health-related quality of life (HRQL) is usually measured using either observational methods or standardized questionnaires. DEMQOL-Proxy is a standardized questionnaire measuring HRQL of people with dementia and is usually reported by a family carer. However, not all residents have a family carer who visits often enough to act as a proxy. OBJECTIVES: We evaluated the psychometric performance of DEMQOL-Proxy when reported on behalf of people with dementia in residential care by a "trained proxy" (DEMQOL-Proxy-TP). PARTICIPANTS: We recruited a sample of 87 people with dementia living in care homes around the UK. METHODS: We used modern psychometric methods (based on the Rasch model) to evaluate DEMQOL-Proxy-TP (on behalf of 85 residents) in a cross-sectional study. We evaluated scale-to-sample targeting, ordering of item thresholds, item fit to the model and differential item functioning (sex, age, type of dementia), local independence, unidimensionality and reliability on the full set of items (31 items) and also a smaller item set (26 items). RESULTS: The smaller item set (DEMQOL-Proxy-TP-26) performed better than the original item set and was found to fit the model (p = 0.68). Nevertheless, 17 items were found to have disordered thresholds, and 24 pairs of items showed local dependency (residual correlations >0.3). There were also some areas where scale-to-sample targeting could be improved. CONCLUSION: After resolving the identified anomalies, DEMQOL-Proxy-TP can provide adequate measurement of HRQL of people with dementia living in residential care, particularly when no family carer is available. This can be interpreted at the group level but is not yet robust enough for use at the individual level. Future work will compare these results with the psychometric performance of DEMQOL-Proxy reported by family carers and DEMQOL self-reported by the residents.

Memory assessment services and health-related quality of life: 1-year follow-up.

OBJECTIVES: Our group has already demonstrated that patients' health-related quality of life (HRQL) improves in the first 6 months after their first appointment at memory assessment services (MASs), but the sustainability of such gains is unknown. We aimed to describe changes in patients' HRQL at 12 months after their first MAS appointment and to examine associations with patient and MAS characteristics. METHODS: We collected data from 702 patients and 452 lay caregivers at the first appointment and 12 months later. Multivariable linear regression was used to examine the relationships of change in HRQL (self-reported and proxy-reported) with patients' characteristics and use of post-diagnostic interventions, and multilevel models were used to analyse the relationships of HRQL with MAS characteristics. RESULTS: In the whole group, self-reported HRQL improved over 12 months (+3.5 points, 95% CI 2.7 to 4.2). Among people diagnosed with dementia, improvement in HRQL was more than double that among those with mild cognitive impairment or no diagnosis. Proxy-reported HRQL improved only in those diagnosed with dementia (+1.2 points, 95% CI 0.2 to 2.2). Changes in HRQL were not associated with any patient characteristics. The only feature of MASs associated with larger improvements in HRQL was the presence of advisory and support staff. CONCLUSIONS: Improvements in HRQL observed at 6 months are maintained up to 1 year after the first MAS appointment, more so among those who receive a diagnosis of dementia. Continued follow-up will determine if the improvement is even longer lasting.

Is the effectiveness of memory assessment services associated with their structural and process characteristics?

OBJECTIVES: The aim of this study was to investigate whether structural and process characteristics of memory assessment services (MASs) are associated with outcomes (changes in patients' health-related quality of life (HRQL), carers' HRQL and carers' burden) over the first 6 months following the first appointment. METHODS: Data from 785 patients referred to 69 MASs and 511 of their lay carers, collected at the first appointment and 6 months later. Data on MAS characteristics were collected using a questionnaire at baseline. We used multilevel linear regression models to explore the associations of patients' HRQL and carers' outcomes with structural and process characteristics of MASs. Analyses were conducted on the full sample of patients and carers, and separately on those patients diagnosed with dementia. RESULTS: None of the structural (skill mix, workload, volume, provision of clinical assessments and provision of psychosocial support) or process (waiting time, length and number of appointments, anti-dementia drug use and psychosocial interventions use) characteristics included in the analyses were associated with patients' or carers' outcomes at 6 months, apart from the presence of allied health professionals (AHPs), which was associated with a DEMQOL score 2.7 points higher. When only those with a diagnosis of dementia were considered, the association with presence of AHPs was no longer observed. CONCLUSIONS: Apart from involving AHPs, alterations to the way MASs are structured or function appear unlikely to improve their effectiveness in improving patients' and carers' HRQL. It is possible that the characteristics of MASs may influence patients' and carers' experience, but this was not studied. Copyright © 2017 John Wiley & Sons, Ltd.

DEMQOL and DEMQOL-Proxy: a Rasch analysis.

BACKGROUND: DEMQOL and DEMQOL-Proxy are widely used patient reported outcome measures (PROMs) of health related quality of life in people with dementia (PWD). Growing interest in routine use of PROMs in health care calls for more robust instruments that are potentially fit for reliable and valid comparisons at the micro-level (patients) and meso-level (clinics, hospitals, care homes). METHODS: We used modern psychometric methods (based on the Rasch model) to re-evaluate DEMQOL (1428 PWDs) and DEMQOL-Proxy (1022 carers) to ensure they are fit for purpose. We evaluated scale to sample targeting, ordering of item thresholds, item fit to the model, and differential item functioning (sex, age, relationship), local independence, unidimensionality and reliability on the full set of items and a smaller item set. RESULTS: For both DEMQOL and DEMQOL-Proxy the smaller item set performed better than the original item set. We developed revised scores using the items from the smaller set. CONCLUSIONS: We have improved the scoring of DEMQOL and DEMQOL-Proxy using the Rasch measurement model. Future work should focus on the problems identified with content and response options.

Implementing and Evaluating a Counseling Program in Partnership With a Community-based Domestic Violence Service Provider.

BACKGROUND: Given the burden of intimate partner violence (IPV), effective counseling interventions that are accessible to women in their own communities are needed. OBJECTIVES: To describe the collaborative process of implement ing and evaluating a new counseling program for IPV-the Women's Initiative for Safety and Health (WISH)-in a community setting and present results of its Thrst pilot test. METHODS: WISH is a stage-tailored, eight-session counseling program based on the transtheoretical model. Imple men tation evaluation addressed program exposure/Thdelity, counselor experience, and client experience. Outcome evaluation measured change in IPV-related incidents, self-efficacy, decisional balance, overall health, quality of life, and stage of change among 19 women. RESULTS: Both counselors and clients perceived the WISH intervention positively. Across all outcomes, there were improvements among some women, most notably in perceived self-efficacy, decisional balance, and stage of change. CONCLUSIONS: Academic-community partnerships can facilitate the translation of theory-based interventions for use in community-based settings.

Patient-reported outcome (PRO) questionnaires for men who have radical surgery for prostate cancer: a conceptual review of existing instruments.

To critically review conceptual frameworks for available patient-reported outcome (PRO) questionnaires in men having radical prostatectomy (RP), psychometrically evaluate each questionnaire, and identify whether each is appropriate for use at the level of the individual patient. We searched PubMed, the Reports and Publications database of the University of Oxford Patient-Reported Outcomes Measurement Group and the website of the International Consortium for Health Outcomes Measurement (ICHOM) for psychometric reviews of prostate cancer-specific PRO questionnaires. From these we identified relevant questionnaires and critically appraised the conceptual content, guided by the Wilson and Cleary framework and psychometric properties, using well established criteria. The searches found four reviews and one recommendation paper. We identified seven prostate cancer-specific PROs: the Expanded Prostate Cancer Index Composite-26 (EPIC-26), Expanded Prostate Cancer Index Composite-50 (EPIC-50), University of California-Los Angeles Prostate Cancer Index (UCLA-PCI), Functional Assessment of Cancer Therapy - Prostate Cancer Subscale (FACT-P PCS), European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire - prostate specific 25-item (EORTC QLQ-PR25), Prostate Cancer - Quality of Life (PC-QoL), and Symptom Tracking and Reporting (STAR). Six out of seven measures purported to measure health-related quality of life (HRQL), but items focused strongly on urinary and sexual symptoms/functioning. The remaining questionnaire (STAR) claimed to assess functional recovery after RP. The psychometric evidence for these questionnaires was incomplete and variable in quality; none had evidence that they were appropriate for use with individual patients. Several questionnaires provide the basis of measures of urinary and/or sexual symptoms/functioning. Further work should explore other aspects of HRQL that are important for men having RP. Further psychometric work is also needed to determine whether they can be used at the individual level.