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BACKGROUND The Endometriosis Health Profiles (EHPs), the EHP-30 and EHP-5, are patient-reported outcome measures that were developed to measure the health-related quality of life (HRQoL) of women living with endometriosis. Prior to their development, a systematic review was undertaken which identified that the HRQoL of women living with endometriosis was poorly understood, with only three medical and one surgical study identified. OBJECTIVE AND RATIONALE The 20-year anniversary of the EHP-30 provided a timely opportunity to assess how the tools have been used and explore what the findings tell us about the impact of endometriosis and its associated treatments upon women's QoL. Applying robust systematic review methodology, following PRISMA guidelines, we sought to answer: How many studies have used the EHP and for what purpose?; What are the demographic characteristics and international context of the studies?; What is the methodological nature and quality of the studies?; Which interventions have been assessed and what are the reported EHP outcomes?; and Can the EHP outcomes of these interventions be analysed using a meta-analysis and, if so, what do the results show? SEARCH METHODS The electronic databases MEDLINE, CINAHL, PsycINFO, PubMed, and Google Scholar were searched from the year the EHP was first published, in 2001 to 26 February 2020 using the search terms 'EHP30', 'EHP5', 'EHP-30', 'EHP-5', 'endometriosis health profile 30', and 'endometriosis health profile 5'. We updated the searches on 9 April 2021. All included studies were quality assessed using the Mixed Methods Appraisal Tool (MMAT). OUTCOMES The review included 139 papers. In clinical intervention studies, the EHPs were deployed most frequently to measure the outcomes of medical (n = 35) and surgical (n = 21) treatment. The EHPs were also used in 13 other intervention studies, 29 non-interventional studies, 32 psychometric/cross cultural validation studies; six diagnostic studies, and in three other studies to measure outcomes in related conditions. They were mainly deployed in studies undertaken in Europe and North America. Overall, regardless of the nature of the intervention, most women reported improvements in HRQoL after treatment. Surgical interventions generally resulted in significant improvements for the longest amount of time. There was also evidence that when participants stopped taking medication their EHP scores worsened, perhaps reinforcing the temporary impact of medical treatment. Younger patients reported more negative impact upon their HRQoL. Further evidence using classical test theory to support the EHPs' robust psychometric properties, including acceptability, dimensionality, reliability, validity (including cross-cultural), and responsiveness, was demonstrated, particularly for the EHP-30. Strikingly, using anchor-based methods, EHP-30 responsiveness studies demonstrate the largest mean changes in the 'control and powerlessness' domain post-intervention, followed by 'pain'. MMAT outcomes indicated the quality of the papers was good, with the exception of five studies. A meta-analysis was not undertaken owing to the heterogeneity of the interventions and papers included in this review. WIDER IMPLICATIONS Women with endometriosis face a lifetime of surgical and/or medical interventions to keep the condition under control. Less invasive treatments that can lead to improved longer term physical and psycho-social outcomes are needed. The EHPs are reliable, valid, acceptable, and responsive tools, but more assessment of EHP outcomes using modern psychometric methods and in the context of women from ethnically diverse backgrounds and in routine clinical care would be beneficial. Given the brevity of the EHP-5, it may be the most appropriate version to use in routine clinical practice, whereas the longer EHP-30, which provides more granularity, is more appropriate for research. [ABSTRACT FROM AUTHOR]

Background informal carers provide the majority of the support for persons with dementia living at home. Restrictions imposed due to COVID-19 have had a profound impact on the daily life of the entire population. This study provides insight into the impact of these restrictions on carers of people with dementia living at home. Design qualitative semi-structured interviews. Participants purposive sample of carers who provide at least 10 hours of care a week for the person with dementia living at home. Setting UK. Results twenty-three carers were interviewed, and thematic analysis identified three main themes—Changes to daily life, impact on carer health and wellbeing and reduced support from health and social support networks. The results highlight the impact of restrictions imposed on daily life and routines due to the pandemic, wellbeing of carers, reduced social support, lack of access to health and care professionals and respite for carers. The restrictions have had negative consequences on carers' wellbeing, and they have experienced difficulties in accessing formal care services and respite care. Conclusion carers attempt to continue to provide physical, emotional and practical support for persons with dementia in the community throughout the COVID-19 restrictions. To prevent a future carer crisis, carers need better support systems including formal carer services, telecare solutions that work for them and additional support for respite, as the restrictions from this pandemic continue. [ABSTRACT FROM AUTHOR]

Adjuvant radiotherapy in patients with high-risk cutaneous Squamous Cell Carcinoma After surgery (SCC-AFTER): patient and carer views regarding a proposed clinical trial It's certainly worth doing (Patient)If you ... said it [radiotherapy] only benefits thirty percent of patients then there is a school of thought which would say, "Well a hundred percent of patients will want it", and hope that they are in the thirty percent. Dear Editor, Cutaneous squamous cell carcinoma (cSCC) represents the second most common cancer in the UK.1 High-risk cSCC represents a subgroup of this disease with higher risk of metastasis and death,2 and management remains unclear due to a shortage of randomized controlled trials (RCTs).3 We undertook Patient and Public Involvement (PPI) consultations with 13 patients and 3 carers with experience of cSCC, to explore their views about a trial that will investigate effectiveness of treating high-risk cSCC using surgical excision alone compared with surgery plus adjuvant radiotherapy. [Extracted from the article]

Background: the Parkinson's Disease Questionnaire (PDQ-39) is the most widely used Parkinson's specific measure of health status. It is increasingly used in treatment trials, sometimes as a primary end-point, where any missing data can potentially cause difficulties in analyses. Objectives: the purpose of this article is to evaluate the Expectation Maximisation (EM) algorithm for the imputation of missing dimension scores on the 39-item PDQ-39. Methods: a postal survey of patients diagnosed with Parkinson's disease (PD). A total of 1,372 patients were surveyed and 839 (61.15%) questionnaires returned completed or partially completed. Of these, complete PDQ data were available in 715 (85.22%) cases. Data were deleted from this complete dataset and a sub-set of 200 respondents from this dataset and then imputed using the EM algorithm; results were then compared to the dataset before data deletion. Results: results gained from imputation of data closely mirrored that of the complete dataset in each case. Descriptive statistics, mean scores and spread of scores were almost identical between original and imputed datasets. Furthermore, original and imputed datasets were highly correlated [intra-class correlation coefficient (ICC) = 0.93 or greater], and mean differences were small (+1.00). Conclusions: the results suggest that the use of EM for the PDQ-39 provides data that closely mirrors the original when this has been deliberately removed. Consequently, EM is likely to be appropriate for trials using the PDQ that contains missing data points. [ABSTRACT FROM AUTHOR]

Background: Responsiveness to patients is now seen as a key characteristic of effective health systems. This study aimed to learn more about European people's views on the responsiveness of their country's health systems and healthcare providers. Methods: Telephone survey with random samples of the populations in Germany, Italy, Poland, Slovenia, Spain, Sweden, Switzerland and the UK using random digit dialling. Results: Responses were obtained from 8119 people aged 16 and over. Just over half the respondents said that doctors always listened carefully to them, gave them time for questions and provided clear explanations. Respondents from Switzerland and the UK reported consistently high rates of satisfaction with doctors' communication skills, while respondents from Poland were significantly less satisfied. Younger people were more critical than older people. Expectations of patient involvement in treatment decisions were high, particularly among younger people, with 74% indicating a desire to be actively involved. Most respondents felt they should have a choice of primary care doctor, specialist doctor and hospital, but less than half felt they had sufficient information to make an informed choice. There were significant variations between the countries in reported levels of involvement and in satisfaction with opportunities for choice. Conclusions: The results suggest that many European patients want a more autonomous role in health care decision-making. Policy-makers and clinicians should consider how to narrow the gap between public expectations and patients' experience. [ABSTRACT FROM AUTHOR]

Background The purpose of this study was to compare the performance of the 15‐item Picker Patient Experience questionnaire (PPE‐15) when embedded in a short form instrument as compared with a longer form measure. [ABSTRACT FROM PUBLISHER]

Background The aim of this study was to gain population norms for the COOP Charts in a large community sample, and to explore the construct validity, and whether the inclusion of the illustrations influences response rates. Methods A postal survey was carried out using a questionnaire booklet, containing the COOP Charts and a number of other items concerned with lifestyles and illness, sent to 6007 randomly selected subjects over the age of 18 years. Respondents were randomized to receiving the questionnaire booklet with a copy of the COOP Charts including illustrations, or the same booklet but including the COOP items without illustrations. The sample was drawn from the Family Health Services Authority (FHSA) computerized register for Oxfordshire. Outcome measures were scores for the eight dimensions of the COOP Charts. Results The survey achieved an adjusted response rate of 56.72 per cent. There was no difference in response rate or scores on the eight dimensions of the COOP Charts when broken down by those who received the illustrated Charts or simply the items from the measure without illustrations. Normative data for the COOP Charts are reported, broken down by age, sex, social class and whether respondent reported chronic illness or not. Conclusion The illustrations included in the original charts do not appear to influence response rates, or responses given to the questions. The evidence suggests that items of the COOP Charts provide a short and comprehensive survey of health status. The normative data provided in this paper may further facilitate their validation and use. [ABSTRACT FROM AUTHOR]

Background The aim of the study was to determine the construct validity of the 12‐item Short Form health survey questionnaire (SF‐12) across ethnic groups in a large community sample of the United Kingdom. [ABSTRACT FROM PUBLISHER]

Background. The new UK National Statistics Socio-Economic Classification (NS-SEC) is theoretically based on differences in employment relations and conditions. Differences in employment relations could account for some of the often observed social class differences in health in the United Kingdom. This study investigates the associations of the NS-SEC with a well-validated health outcome measure - the Short Form health survey (SF-36). [ABSTRACT FROM PUBLISHER]

Background. The SF-36 is a widely used measure of health status that can be scored to provide either a profile of eight scores or two summary measures of health, the Physical Component Summary and Mental Component Summary (PCS and MCS). Scoring of the summary scales is undertaken by weighting and summing the original eight dimensions. These weights are gained from factor analysis of data from a general population and have been assumed to be country specific. However, it has been suggested that the weights gained from the US developers could be applied to all datasets, throughout the world, for purposes of comparability and simplicity. The purpose of this study is to evaluate US and UK scoring schemes in a UK population dataset, and in a cohort study of elderly congestive heart failure patients receiving standard therapy and a trial of open vs laparoscopic surgery for hernia repair. [ABSTRACT FROM PUBLISHER]

Background Population norms for the attributes included in measurement scales are required to provide a standard with which scores from other study populations can be compared. This study aimed to obtain population norms for the Short Form 36 (SF-36) Health Survey Questionnaire, derived from a random sample of the population in Britain who were interviewed at home, and to make comparisons with other commonly used norms. [ABSTRACT FROM PUBLISHER]

Presents a survey which outlines the development and validation of the Parkinson's disease Questionnaire (PDQ-39) in Great Britain. Details on the PDQ-39; How the survey was conducted; Details on the results; Discussion on the findings.

Evaluates treatment for congestive heart failure of older patients using generic measures of health status measures. Form 36 (SF-36) and Dartmouth COOP charts; Angiotensin converting enzyme inhibitor treatment; Indication for SF-36 and COOP charts health status measures; Standardized questionnaires and methods inappropriate for patient group.

This prospective cohort study of patients who consulted general practitioners complaining of excessive menstrual bleeding measured changes in quality of life and patients' satisfaction following different forms of treatment for menorrhagia. Three hundred and forty-eight patients were followed-up for 18 months using self-completion questionnaires which included generic measurements of health-related quality of life (SF-36) and a disease-specific questionnaire to measure the social impact of menstrual symptoms. Only 15 patients (4%) received no active treatment, 132 (38%) underwent surgical treatment (hysterectomy or endometrial resection), and the remainder were prescribed drugs. Those in the surgical group with both moderate and severe symptoms experienced significant improvements in their quality of life. Patients with moderate symptoms who did not undergo surgery improved in the social functioning and energy dimensions of the SF-36, but those with severe symptoms who received drug treatment only experienced no significant quality-of-life benefits. Patients who had not had surgery were significantly more likely to be dissatisfied with their treatment (21%) than those in the surgical group (5%). Since menorrhagia can have adverse effects on many aspects of a patient's daily life, it is important to measure the effects of treatment on quality of life. This study has demonstrated the feasibility of doing so. [ABSTRACT FROM PUBLISHER]

Jenkinson C and Fitzpatrick R. Measurement of health status in patients with chronic illness: comparison of the Nottingham health profile and the general health questionnaire. 1990; 7:121–124. The results of two commonly used instruments for measuring health status were compared in patients with chronic illness. The Nottingham health profile (NHP) is a measure of perceived health, while the general health questionnaire (GHQ) is a measure of non-psychotic psychiatric disturbance. The questionnaires were completed by patients suffering either rheumatoid arthritis or migraine. The results provide evidence that, despite some specific problems in the measurement of pain and emotional reactions, the NHP and GHQ may be used to assess the impact of illness upon sufferers' lives, not only in severely disabling disorders such as rheumatoid arthritis, but in health problems such as migraine which have often been considered as relatively minor ailments. [ABSTRACT FROM PUBLISHER]

Background The SF-36 is a generic health status measure which has gained popularity as a measure of outcome in a wide variety of patient groups and social surveys. However, there is a need for even shorter measures, which reduce respondent burden. The developers of the SF-36 have consequently suggested that a 12-item sub-set of the items may accurately reproduce the two summary component scores which can be derived from the SF-36 [the Physical Component Summary Score (PCS) and Mental Health Component Summary Score (MCS)]. In this paper, we adopt scoring algorithms for the UK SF-36 and SF-12 summary scores to evaluate the picture of change gained invarious treatment groups. Methods The SF-36 was administered in three treatment groups (ACE inhibitors for congestive heart failure, continuous positive airways therapy for sleep apnoea, and open vs laparoscopic surgery for inguinal hernia). Results PCS and MCS scores calculated from the SF-36 or a sub-set of 12 items (the‘SF-12’) were virtually identical, and indicated the same magnitude of ill-health and degree of change overtime. Conclusions The results suggest that where two summary scores of health status are adequate then the SF-12 may be the instrument of choice. [ABSTRACT FROM PUBLISHER]

The author discusses the importance of patient reported outcome measures (PROMs) as a source of information in healthcare. He mentions the clinical measures such as EQ-5D, Health Utilities Index (HUI) and SF-6D which are designed to provide information based on the reports of patients. The issues on PROM which include usability of PROMs in patient level and thresholds as a set for measures are also discussed by the author.

A letter to the editor and a reply are presented in response to the article "Properties of the Picker Patient Experience questionnaire in a randomized controlled trial of long versus short form survey instruments" by Crispin Jenkinson and colleagues in the 2003 issue is presented.

A letter to the editor is presented in response to the article "Self-reported functioning and well-being in patients with Parkinson's disease: comparison of the Short-form 36 and the Parkinson's Disease Questionnaire" published in a 1995 issue and a response to the letter is offered by the authors.

Objective:  to determine minimally important differences for dimensions of the PDQ-39, a 39-item Parkinson's disease questionnaire. A minimally important difference is defined as the smallest change between two scores that is subjectively meaningful to patients. Data on minimally important differences are essential for the calculation of sample sizes in trials and surveys. Methods:  we conducted a postal survey of randomly selected members of 13 local branches of the Parkinson's Disease Society, asking them to complete the PDQ-39 on two occasions, 6 months apart. On the first occasion respondents received the PDQ-39, demographic questions and a request to provide their name and address if they were willing to take part in the follow-up survey. After 6 months, we sent those who had agreed another copy of the questionnaire and also asked them to indicate how much change they had experienced since baseline in overall health and in each of the eight domains of the questionnaire. Results:  we calculated minimally important difference for each dimension and the index score for those reporting minor change since baseline. The minimally important difference varied across dimensions. Conclusions:  these results indicate the minimum magnitude of change that should be sought when designing studies to evaluate change over time in Parkinson's disease. Since minimally important differences differ across dimensions, those designing studies in which sample size calculations are based on the PDQ-39 as an outcome measure should select the dimension which is the primary variable of interest. [ABSTRACT FROM AUTHOR]