Using an integrated competence model to evaluate a health visitor cascade training programme for the Family Resilience Assessment Instrument and Tool (FRAIT).

This paper reports on an evaluation of health visitor trainers' experience of a cascade training programme delivered in Wales, UK. Health visitors used Driscoll's model (What, So What, Now What) to organise their feedback and an integrated competence model developed by Weeks et al. was used to analyse the feedback via category analysis of free text. As well as feedback on the logistics of running the training, the evaluation allowed for cognitive and functional competence to be identified along with personal and meta competence. There was limited scope for identifying ethical competence in the Health Visitor cascade trainer feedback. Suggestions are made for how this may be addressed.

Are UK Policies and Practices for Regulated Donor Insemination Forcing Women to Find Unregulated Sperm Donors Online? A Perspective on the Available Evidence.

In recent years, there has been an increase in women obtaining donor sperm via unregulated websites and social media. In this article, we bring together the disparate evidence in this emerging field to consider whether restrictive UK policies and practices for regulated clinical donor insemination (DI) are a potential explanation for the growing use of the currently unregulated, online route to donor insemination. To this end, we examine the nature of the National Institute for Health and Care Excellence (NICE) guidelines, recent data provided by the Human Fertilisation and Embryology Authority (HFEA), and prior research on who uses online sperm donation and their reasons for doing so. In addition, we highlight why this issue is important by outlining some of the benefits and drawbacks of the unregulated route. We argue that, whilst there are many factors driving the unregulated route to DI, restrictive UK policies and practices for regulated DI might be one of these. We conclude that turning our attention to structural barriers, such as regulated DI policies and practices, is necessary to produce more definitive evidence of this potential issue, and that adopting a Reproductive Justice framework could lead to more equitable provision of regulated DI services.

Understanding the relationship between social determinants of health and maternal mortality: Scientific Impact Paper No. 67.

Within this document we use the terms pregnant woman and women's health. However, it is important to acknowledge that it is not only people who identify as women for whom it is necessary to access care. Obstetric and gynaecology services and delivery of care must therefore be appropriate, inclusive and sensitive to the needs of those individuals whose gender identity does not align with the sex they were assigned at birth.

A Baby at All Costs? Exploring the Use and Provision of Unproven Adjuvant Treatments in the Context of IVF.

The year 2018 marked 40 years since the birth of Louise Brown, the first baby born as a result of pioneering in vitro fertilization (IVF) treatment. Since then, advances have seen a wide range of reproductive technologies emerge into clinical practice, including adjuvant treatments often referred to as IVF "add-ons." However, these "optional extras" have faced growing criticism, especially when they have often come at additional financial cost to the patient and have little evidence supporting their efficacy to improve pregnancy or birth rates. Despite this, according to the latest national patient survey by the Human Fertilisation and Embryology Authority, three quarters of patients who had fertility treatment in the United Kingdom in the past two years had at least one type of treatment add-on highlighting the growing demand for these interventions. This article uses a psychosocial perspective to consider the motivations behind patient and clinician behavior along with the wider societal and economic factors that may be impacting upon the increase in the use of adjuvant treatments in fertility clinics more widely. It suggests the reasons fertility patients use unproven "optional extras" are complex, with interpersonal, psychological, and social factors intertwining to generate an increase in the use of IVF add-ons.

Incorporating Process Utility into Cost-Effectiveness Analysis via a Bolt-On Domain to the SF-6D: An Exploratory Study.

BACKGROUND: Within the UK, standard methods of economic evaluation centre on the maximisation of the quality-adjusted life-year (QALY). However, preference-based measures used to estimate QALYs may not be suited to all economic evaluations, as they routinely measure only health outcomes. AIM: This study used an economic evaluation alongside a clinical trial (EEACT) comparing patients' preferences for a telephone versus a face-to-face consultation to incorporate process utility into cost-effectiveness analyses. METHODS: An EEACT is described that generates QALYs using Short-form 6-dimension version 1 (SF-6Dv1) responses. These results exclude specific consideration of process utility. A health state valuation study is then reported that bolts a process domain onto the SF-6Dv1 using data obtained from the EEACT. These results therefore include the consideration of process utility. The results of the EEACT with and without process utility are then compared. RESULTS: This study shows that the QALY, in its current form, does not capture patient benefits associated with the process of receiving healthcare. The EEACT illustrates this, showing a statistically significant difference between control and intervention groups for the patient experience questionnaire communication domain, indicating that patients preferred the intervention. This preference was not identified in the cost-effectiveness outcomes, and the point estimates lie in the north-west quadrant of the cost-effectiveness plane. The preference is captured after adding a communication domain. The point estimate moves to the north-east quadrant, where the intervention is more effective and more costly than the control. CONCLUSION: This study indicates that it is possible to capture patients' preferences for processes associated with care, in a format compatible with the QALY.

Developing a family resilience assessment tool for health visiting/public health nursing practice using virtual commissioning, high-fidelity simulation and focus groups.

UK public health nurse assessment of family resilience is a necessary component of monitoring family health and children's development and identifying areas for change. This research was part of an exploration of Welsh public health nurses' understanding of 'family resilience' as a concept underpinning their practice. From it, the Family Resilience Assessment Instrument Tool (FRAITTM www.frait.wales/) was developed for public health nurses use. We report on a virtual commissioning process using focus groups and an immersive simulation suite to test a FRAIT prototype in a safe environment before field testing. Virtual commissioning design: Hydra-Minerva Immersive Simulation Suite - individual public health nurses presented with a multi-media scenario as they used the prototype FRAIT. Follow-up focus groups for usability insights before field testing. Virtual commissioning raised real-world issues which public health nurses discussed in focus groups. Issues were scoring, absence of information, focusing on family resilience, identifying adults caring for children, potential for use, identifying need and monitoring change, potential impact of using FRAIT and fitting it to everyday practice. Prototype testing like this allowed us to fine tune the FRAIT for field testing.

Development and initial validation of an electronic personal assessment questionnaire for menstrual, pelvic pain and gynaecological hormonal disorders (ePAQ-MPH).

OBJECTIVE: Menstrual disorders, pelvic-pain and gynaecological hormonal conditions in women can have a significant impact on quality-of-life. Reliable assessment and monitoring of these intimate conditions is challenging. Patient reported outcome measures (PROMs) can be invaluable in providing objective assessment, but no comprehensive PROM assessing all of these conditions and their impact on quality of life is currently available. The purpose of this study was to develop and undertake initial psychometric testing of a comprehensive interactive electronic patient reported outcome measure for these conditions. STUDY DESIGN: A prototype electronic PROM (ePAQ-MPH) was developed following systematic literature review, semi structured interviews with 25 patients and expert panel review. Exploratory factor analysis was undertaken in 291 women attending a menstrual-disorders clinic; establishing a domain structure and enabling item reduction. Two validated PROMS (Women's Health Questionnaire and Menstrual Distress Questionnaire) were completed to assess criterion validity in 213 patients. Test-retest reliability was carried out in 30 women completing ePAQ-MPH at least one week apart. Patients' views on 'Value' and 'Burden' were assessed in 278 women using a validated 10-item survey measuring questionnaire utility (QQ-10). Confirmatory factor analysis (CFA) of the revised version of ePAQ-MPH following item reduction was undertaken in a different sample of 254 women. RESULTS: Exploratory factor analysis identified 18 domains (Cronbach's α > 0.7) and 30 redundant items. Test-retest analysis found acceptable intra-class correlations of 0.6-0.9 (p < 0.05). Eight domains were compared with Menstrual Distress Questionnaire showing moderate or strong correlation in seven domains. Ten domains were compared with Women's Health Questionnaire, six of which showed moderate correlation. Mean QQ-10 Value and Burden scores were 76 and 25, respectively (SD=15.8 and 15.5). The mean completion time for ePAQ-MPH was 31 min. CFA of the revised version 2 instrument with 15 domains showed good model fit. CONCLUSIONS: Whilst wider psychometric testing of the revised version of ePAQ-MPH is required, including in different settings and in assessments of data quality and responsiveness, initial analysis provides some evidence for reliability, validity and acceptability of this multi-dimensional electronic PROM. ePAQ-MPH shows potential for both patient assessment and roles in service evaluation and research.

What are the concerns and goals of women attending a urogynaecology clinic? Content analysis of free-text data from an electronic pelvic floor assessment questionnaire (ePAQ-PF).

INTRODUCTION AND HYPOTHESIS: Understanding patients' concerns and goals is essential for providing individualised care in urogynaecology. The study objectives were to undertake a content analysis of free-text concerns and goals recorded by patients using an electronic pelvic-floor questionnaire (ePAQ-PF) and measure how these related to self-reported symptom and health-related quality-of-life (HRQOL) data also recorded using ePAQ-PF. METHODS: A total of 1996 consenting patients completed ePAQ-PF. Content analysis was undertaken of free-text responses to the item: 'Considering the issues that currently concern you the most, what do you hope to achieve from any help, advice or treatment?' Key content themes were identified by the lead researcher, and three researchers read and coded all recorded responses. Student's t test was used to compare ePAQ-PF domain scores for patients reporting concerns in the relevant domain with those who did not. RESULTS: In total, 63% of participants who completed the questionnaire, recorded at least one free-text item. Content analysis identified 1560 individual concerns coding into the 19 ePAQ-PF domains. Symptom scores were significantly higher for patients reporting free-text concerns in 18 domains (p < 0.05). Additional concerns relating specifically to body image were recorded by 11% of patients. Key areas of importance emerging for personal goals included cure/improvement, better understanding, incontinence pad use, sexual function and surgery. CONCLUSIONS: Free-text reporting in ePAQ-PF is utilised by patients and facilitates self-expression and discussion of issues impacting on HRQOL. The significant relationship between recorded free-text concerns and ePAQ-PF domain scores suggests convergent validity for the instrument. Development and psychometric testing of a domain to assess body image is proposed.

Developing the health visitor concept of family resilience in Wales using Group Concept Mapping.

INTRODUCTION: A health visitor's ability to assess and analyse aspects of family resilience in daily practice is essential to enable practitioners to support families and facilitate positive lifestyle choices, and improve child health and developmental outcomes. The purpose of this research was to undertake an in-depth exploration of the concept of family resilience as understood by health visitors in Wales and to develop a concept map. This knowledge has been used to develop the Family Resilience Assessment Instrument Tool (FRAIT). This is a standardised form of assessment, measuring instrument, guidance, training package and community of practice for use in health visitor daily practice. This article presents the first stage of the FRAIT research study, that of identifying the clusters within the concept map of what health visitors perceive as 'family resilience'. METHODS: A structured Group Concept Mapping (GCM) methodology using Concept Systems' Global Max online software was used to gain a consensus of the understanding of the concept of family resilience from 62 invited health visitors practising across Wales. This is an integrated qualitative and quantitative approach to brainstorming, idea synthesis, idea sorting, idea rating and group analysis. GCM has six clear steps, with four steps described in the method: 'preparing for concept mapping', 'generating ideas', 'structuring the statements' and 'concept mapping analysis'. Steps 5 and 6, 'interpreting the maps' and 'utilisation', are considered in the results section. RESULTS: Use of multi-dimensional scaling and hierarchical cluster analysis enabled point, cluster, rating and pattern matching maps to be presented to the study group. These were then interpreted, understood and consensus gained on how the concept of family resilience was constructed from both the study group and the health visitor participants. Family resilience understood by health visitors in Wales comprises five clusters: 'family health', 'responsive parenting', 'engagement', 'family support' and 'socioeconomic factors'. Each of the clusters has an identified number of underpinning statements from a total number of 117 statements. CONCLUSION: Family resilience as understood by health visitors is a multidimensional concept. Using online software such as Concept Systems' Global Max enabled health visitors working across Wales to achieve a consensus and generate the data in preparation for building FRAIT for use in their daily practice as required by Welsh Government policy.

A prospective observational study of the impact of an electronic questionnaire (ePAQ-PO) on the duration of nurse-led pre-operative assessment and patient satisfaction.

OBJECTIVE: Standard pre-operative assessment at our institution involves a comprehensive history and examination by a nurse practitioner. An electronic pre-operative assessment questionnaire, ePAQ-PO® (ePAQ, Sheffield, UK) has previously been developed and validated. This study aimed to determine the impact of ePAQ-PO on nurse consultation times and patient satisfaction in low-risk patients. METHODS: The duration of pre-operative assessment consultation was recorded for American Society of Anesthesiology physical classification 1 and 2 patients undergoing pre-operative assessment by an electronic questionnaire (ePAQ-PO group) and standard face-to-face assessment by a nurse practitioner (standard group). Patients were also asked to complete an eight-item satisfaction questionnaire. Eighty-six patients were included (43 in each group). RESULTS: After adjusting for the duration of physical examination, median (IQR [min-max]) consultation time was longer in the standard compared to the ePAQ-PO group (25 (18-33 [10-49]) min vs. 12 (8-17 [4-45]) min, respectively; p <0.001). Response rate for the satisfaction questionnaire was 93%. There was no significant difference in patient satisfaction scores (38/39 in standard group vs. 39/41 in ePAQ-PO group were fully satisfied with their pre-operative assessment; p = 0.494). CONCLUSION: Pre-operative assessment using ePAQ-PO is associated with a significant reduction of over 50% in the duration of the assessment without impacting on patient satisfaction.

Evaluating the impact of a 'virtual clinic' on patient experience, personal and provider costs of care in urinary incontinence: A randomised controlled trial.

OBJECTIVE: To evaluate the impact of using a 'virtual clinic' on patient experience and cost in the care of women with urinary incontinence. MATERIALS AND METHODS: Women, aged > 18 years referred to a urogynaecology unit were randomised to either (1) A Standard Clinic or (2) A Virtual Clinic. Both groups completed a validated, web-based interactive, patient-reported outome measure (ePAQ-Pelvic Floor), in advance of their appointment followed by either a telephone consultation (Virtual Clinic) or face-to-face consultation (Standard Care). The primary outcome was the mean 'short-term outcome scale' score on the Patient Experience Questionnaire (PEQ). Secondary Outcome Measures included the other domains of the PEQ (Communications, Emotions and Barriers), Client Satisfaction Questionnaire (CSQ), Short-Form 12 (SF-12), personal, societal and NHS costs. RESULTS: 195 women were randomised: 98 received the intervention and 97 received standard care. The primary outcome showed a non-significant difference between the two study arms. No significant differences were also observed on the CSQ and SF-12. However, the intervention group showed significantly higher PEQ domain scores for Communications, Emotions and Barriers (including following adjustment for age and parity). Whilst standard care was overall more cost-effective, this was minimal (£38.04). The virtual clinic also significantly reduced consultation time (10.94 minutes, compared with a mean duration of 25.9 minutes respectively) and consultation costs compared to usual care (£31.75 versus £72.17 respectively), thus presenting potential cost-savings in out-patient management. CONCLUSIONS: The virtual clinical had no impact on the short-term dimension of the PEQ and overall was not as cost-effective as standard care, due to greater clinic re-attendances in this group. In the virtual clinic group, consultation times were briefer, communication experience was enhanced and personal costs lower. For medical conditions of a sensitive or intimate nature, a virtual clinic has potential to support patients to communicate with health professionals about their condition.

Systematic review of health-related quality of life and patient-reported outcome measures in gestational trophoblastic disease: a parallel synthesis approach.

Gestational trophoblastic disease is a rare complication of pregnancy that can develop into cancer. Medical outcomes of gestational trophoblastic disease are well researched, but the effect of the disease on health-related quality of life (HRQOL) requires attention if care is to be improved. This systematic review was designed to establish the effect of gestational trophoblastic disease and its treatment on HRQOL and to identify the appropriateness of HRQOL measures. Quantitative studies found HRQOL in long-term survivors of gestational trophoblastic disease to be at or above population norms. The disease had a negative effect on HRQOL for patients who experienced physical, psychological, and social sequelae related to the condition. Clinically significant levels of anxiety, depression, sexual dysfunction, and fertility-related distress were found in these patients. The results should be treated with caution because the evidence base was limited to small heterogeneous samples, data were retrospective, and a range of measures was used. Within qualitative studies on HRQOL for survivors of gestational trophoblastic disease, new conditions emerged, including nerve damage, fatigue, amenorrhoea, and grief. These areas are not captured in existing patient-reported outcome measures, and the content might not be valid for this population. Further qualitative research might lead to the development of a specific patient-reported outcome measure for gestational trophoblastic disease, providing reliable, meaningful, and valid assessments, and allowing longitudinal data to be obtained.

Assessment of the face validity, feasibility and utility of a patient-completed questionnaire for polymyalgia rheumatica: a postal survey using the QQ-10 questionnaire.

BACKGROUND: The development of a patient-reported outcome measure (PROM) for polymyalgia rheumatica (PMR), a condition that causes pain, stiffness and disability, is necessary as there is no current validated disease-specific measure. Initial literature synthesis and qualitative research established a conceptual framework for the condition along with a list of symptoms and effects of PMR that patients felt were important to them. These findings were used to derive the candidate items for a patient-completed questionnaire. We aim to establish the face validity of this initial "long form" of a PROM. METHODS: People with a current or previous diagnosis of PMR were recruited both from the community and from rheumatology clinics. They were asked to complete the PMR questionnaire along with the QQ-10 questionnaire, which is a measure used to assess the face validity, feasibility and utility of patient healthcare questionnaires. RESULTS: A total of 28 participants with an age range of 59-85 years and a length of time since diagnosis from 4 months to 18 years completed the QQ-10. The overall mean "value" score was 79% (SD 12), and the mean "burden" score was 21% (SD 18). The free-text comments were analysed thematically and were found to focus on layout, content, where in the clinical pathway the questionnaire would be most beneficial, specific items missing and other areas for consideration. CONCLUSIONS: The high mean value score and low burden score indicate that the questionnaire has good face validity and is acceptable to patients. The questionnaire now needs to undergo further psychometric evaluation and refinement to develop the final tool for use in clinical practice and research.

Patient-completed, preoperative web-based anaesthetic assessment questionnaire (electronic Personal Assessment Questionnaire PreOperative): Development and validation.

BACKGROUND: Worldwide, guidelines support the routine use of anaesthetic preoperative assessment (POA), a process that is frequently supported by pro formas and unvalidated questionnaires. Electronic questionnaires can provide reliable data. A local initiative has seen the development of a computerised electronic Personal Assessment Questionnaire (ePAQ). OBJECTIVE: To develop and validate a novel electronic instrument for POA. DESIGN: The content and face validity were evaluated in 30 patients. The questionnaire was then modified and completed by a further 300 patients, evaluating the reliability of its items and scoring algorithms for BMI and American Society of Anesthesiologists (ASA) physical status. The study was approved by the South Yorkshire Regional Ethics Committee (REC 09/H1308/127). SETTING: The study was conducted in a tertiary teaching hospital in the United Kingdom between January 2011 and February 2012 and was funded by a research grant from the Charitable Trustees of Sheffield Teaching Hospitals National Health Service Foundation Trust. PATIENTS: A total of 330 patients aged 18 years or older, listed for surgery and able to read and understand English, were recruited. Neurosurgery; ear, nose and throat; orthopaedics; gynaecology; general and plastic surgery; ophthalmology and urology patients were included. All participants provided written consent. MAIN OUTCOME MEASURES: Validation including test-retest analysis, assessment of patient value and burden, assessment of accuracy, mean score difference of BMI estimation and comparison of inter-rater ASA grading. RESULTS: In all, 77% of patients reported that the ePAQ helped with communication, 99% that it was easy to complete and 98% that they would be happy to use it again. ePAQ preoperative assigned ASA grades matched consultant-assigned grades more frequently than nurse-assigned grades. Self-reported BMI classification was correct in 78% of patients and within one WHO category in a further 21%. Test-retest scores were good. CONCLUSION: Initial evaluation suggests that ePAQ is acceptable to patients. Data collected using the system were found to be reliable, and its intrinsic scoring systems for ASA and BMI are comparable with values assigned by clinicians.

Deprivation and poor psychosocial support are key determinants of late antenatal presentation and poor fetal outcomes--a combined retrospective and prospective study.

BACKGROUND: Published guidelines emphasise the need for early antenatal care to promote maternal and neonatal health. Inadequate engagement with antenatal care is associated with adverse pregnancy outcomes including maternal death. The factors that influence the uptake and utilisation of maternity care services are poorly understood. We retrospectively explore a large maternity database of births in a large referral UK hospital to capture the socio-demographic factors that influence late pregnancy booking, and then prospectively compare the stress and social support status of consenting early and late-booking women. METHODS: Retrospective socio-demographic and clinical outcome data on 59,487 women were collected from the maternity database record of births between 2002 and 2010 at the Jessop Wing Hospital, Sheffield UK. In a follow-on prospective survey between October 2012 and May 2013 a convenience cohort of early and late bookers for antenatal care were then studied using validated scales for fetomaternal attachment, stress and anxiety, and social support. RESULTS: In our retrospective study, pregnancy during the teenage years, higher parity, non-white ethnic background, unemployment and smoking were significantly associated with late access to antenatal services and poor fetal outcomes (P < 0.001). However, late booking per se did not predict adverse fetal outcomes, when socio-demographic factors were accounted for. A high index of multiple deprivation (IMD) score remained independently associated with late booking when confounding factors such as ethnicity and employment status were controlled for in the model (P = 0.03). Our prospective data demonstrated that women who book late were more likely to be unmarried (OR: 3.571, 95 % CI: 1.464-8.196, p = .005), of high parity (OR: 1.759, 95 % CI: 1.154-2.684, P = 0.009), and have lower social support than early bookers (P = 0.047). CONCLUSIONS: Of the many complex sociocultural factors that influence the timing of maternal engagement with antenatal care, multiple deprivation and poor social support remain key factors. Improving access to prenatal care requires in-depth exploration of the relationship between maternal psychosocial health indices, social support mechanisms and engagement with antenatal care. Findings from these studies should inform interventions aimed at improving access to care.

Primary care support for tackling obesity: a qualitative study of the perceptions of obese patients.

BACKGROUND: Obesity has become a major public health issue and there is concern about the response of health services to patients who are obese. The perceptions of obese patients using primary care services have not been studied in depth. AIM: To explore obese patients' experiences and perceptions of support in primary care. DESIGN OF STUDY: Qualitative study with semi-structured interviews conducted in participants' homes. SETTING: Five general practices contrasting in socioeconomic populations in Sheffield. METHOD: Purposive sampling and semi-structured interviewing of 28 patients with a diverse range of ages, backgrounds, levels of obesity and experiences of primary care services. RESULTS: Participants typically felt reluctance when presenting with concerns about weight and ambivalence about the services received. They also perceived there to be ambivalence and a lack of resources on the part of the health services. Participants showed a strong sense of personal responsibility about their condition and stigma-related cognitions were common. These contributed to their ambivalence about using services and their sensitivity to its features. Good relationships with primary care professionals and more intensive support partly ameliorated these effects. CONCLUSION: The challenges of improving access to and quality of primary care support in tackling obesity are made more complex by patients' ambivalence and other effects of the stigma associated with obesity.

Uterine fibroids: a review of health-related quality of life assessment.

OBJECTIVE: To summarize the literature describing the impact of uterine fibroids on health-related quality of life (HRQOL), the measures used to assess HRQOL, and related areas for future research. METHODS: A search of three electronic databases (MEDLINE, Embase, and Current Contents) was performed, and 40 papers were identified referencing leiomyoma or uterine fibroids and (health-related) quality of life (HRQOL). Studies including women with benign gynecological conditions other than uterine fibroids were also reviewed. RESULTS: The EQ-5D, SF-36, and related generic measures are used to assess HRQOL in women with diverse gynecological conditions, including uterine fibroids. The UFS-QOL, a condition- specific measure, provides scores on symptom severity and six HRQOL dimensions. All instruments consistently demonstrate that HRQOL is considerably impaired in women with symptomatic uterine fibroids and that appropriate treatment can lead to improved QOL. CONCLUSIONS: The published data on HRQOL associated with uterine fibroids report significantly lower HRQOL scores for women with fibroids than for women without this disorder. Additional research is needed to confirm these findings and provide greater detail describing the specific domains most affected by uterine fibroids. These advances are necessary to effectively compare new treatment modalities vs. standard invasive therapies, such as hysterectomy.