Cleft Care UK study. Part 5: child psychosocial outcomes and satisfaction with cleft services.

OBJECTIVES: To describe the impact of cleft service centralization on parental perceptions of child outcomes and satisfaction with care from the Cleft Care UK (CCUK) study and compare them to the Clinical Standards Advisory Group (CSAG) study that took place 15 years earlier. SETTING AND SAMPLE POPULATION: A subgroup of respondents from a UK multicentre cross-sectional study (CCUK) of 5-year-olds born with non-syndromic unilateral cleft lip and palate. MATERIALS AND METHODS: Data on parents' perceptions of child self-confidence and their satisfaction with treatment outcomes and service provision were collected via self-report questionnaires. Data were compared with findings from the 1998 CSAG study. RESULTS: Fewer parents in the CCUK study perceived their children as having poor self-confidence than in the 1998 CSAG study (8 and 19%, respectively). At least 81% of parents report satisfaction with the child's facial features after surgery and 98% report being satisfied with the care received. These results are similar to those reported in 1998. There is no evidence of an adverse impact on families' ability to attend appointments at the cleft clinic following centralization. Levels of reported problems (around 30%) with attendance were similar to those reported by CSAG. CONCLUSION: Centralization of cleft services appears to have improved parental perceptions of some child outcomes but has made little difference to already high levels of parental satisfaction with cleft care services. Centralization is not associated with an increase in the proportion of families who find it difficult to attend appointments.

Evaluation of the effectiveness of Face IT, a computer-based psychosocial intervention for disfigurement-related distress.

Some people who have a visible difference (disfigurement) experience psychosocial adjustment problems that can lead to social anxiety and isolation. The aim of this study was to assess the effectiveness of a new computerised CBT-based intervention (Face IT) in reducing anxiety and appearance-related distress for individuals with visible differences. Face IT was tested against a non-intervention control group and standard CBT-based face-to-face delivery. Eighty-three participants were assessed at four time points using the Hospital Anxiety and Depression Scales, Derriford Appearance Scale-24, Body Image Quality of Life Inventory and Fear of Negative Evaluation (FNE). The findings indicate a significant reduction in anxiety and appearance-related distress in both the Face IT intervention and the face-to-face condition. Similar findings were reported for depressive symptoms and FNE. Results at the three and six months follow-up demonstrate increased improvements in psychological functioning with both interventions. This new online psychosocial intervention has been found to be effective at reducing anxiety, depression and appearance concerns amongst individuals with disfigurements, whilst increasing positive adjustment. A remote-access, computer-based intervention offers the potential to provide psychosocial support more easily and in a cost-effective manner to adults with appearance-related distress.

Psychosocial adjustment to skin conditions resulting in visible difference (disfigurement): What do we know? Why don't we know more? How shall we move forward?

This article offers an overview of the current understanding of the psychological factors and processes that play a part in the continuum of distress and positive adjustment in people who are affected by dermatological conditions that affect appearance. Despite research demonstrating the significant psychosocial challenges posed by visible difference and mounting evidence of the role played by psychosocial variables in the etiology, exacerbation, and treatment of skin conditions, current healthcare provisions focus predominantly on the amelioration of physical manifestations. Impediments to progress in the understanding of psychological adjustment, blocks to the development of effective interventions, and challenges to the implementation of integrated psychological and medical care are reviewed. A route map to advance current understanding and care provision is proposed.

Consensus research priorities for facial palsy: A Delphi survey of patients, carers, clinicians and researchers.

Despite the potential negative impact of facial palsy, major gaps in understanding persist surrounding the treatment and care of those affected. This collaborative three-round Delphi process aimed to identify priorities for future facial palsy research, from the perspective of clinicians, researchers, patients and carers. It also determined whether the research priorities of patients and carers aligned with those of health professionals and researchers. In Round 1, participants (n = 85) were asked to generate research questions by focus groups or an online or postal survey. In Rounds 2 (n = 72) and 3 (n = 78), participants were asked to rate the priorities identified on a 5-point ordinal scale. Thirty-six questions reached the definition of 'high priority' consensus. Seven of each groups' top ten research priorities were shared. Prioritised questions included the provision and pathways of care, the psychosocial impact of living with facial palsy and the effective management of side effects. Establishing the research priorities in the field of facial palsy is a significant first step in ensuring that the future research agenda is focussed on topics that are considered important by both patients and health professionals.

The psychosocial benefits of corrective surgery for adults with strabismus.

BACKGROUND: Few papers have addressed the psychological impact of strabismus in adults, with none comparing preoperative and postoperative data using standardised questionnaires relating surgical results and psychosocial outcomes. METHODS: 46 participants were seen at their 6 week preoperative and 3 month postoperative appointments. Standardised measures of anxiety and depression (Hospital Anxiety and Depression Scale), social anxiety (Derriford Appearance Scale), and quality of life (WHOQoLBref) were completed. RESULTS: Preoperatively, levels of depression were comparable to relevant population norms; however, levels of general anxiety were slightly raised and levels of social anxiety and social avoidance were significantly poorer than population norms. Surgery resulted in significant improvements in psychosocial adjustment with improvements on all study variables for the participant group as a whole. The non-diplopic group made more significant gains than the diplopic group. Approximately one third of study measures were significantly correlated with the objective measure of eye misalignment preoperatively dropping to only one variable postoperatively. Calculations involving the subjective measure of eye misalignment and study variables showed the opposite pattern with five variables achieving significance postoperatively. There were no clear sex or age effects apparent in the data. CONCLUSION: Strabismus surgery offers significant improvements to psychological and physical functioning.

A systematic review of patient reported outcome measures (PROMs) used in child and adolescent burn research.

INTRODUCTION: Patient reported outcome measures (PROMs) can identify important information about patient needs and therapeutic progress. The aim of this review was to identify the PROMs that are being used in child and adolescent burn care and to determine the quality of such scales. METHODS: Computerised and manual bibliographic searches of Medline, Social Sciences Index, Cinahl, Psychinfo, Psycharticles, AMED, and HAPI, were used to identify English-language articles using English-language PROMs from January 2001 to March 2013. The psychometric quality of the PROMs was assessed. RESULTS: 23 studies met the entry criteria and identified 32 different PROMs (31 generic, 1 burns-specific). Overall, the psychometric quality of the PROMs was low; only two generic scales (the Perceived Stigmatisation Questionnaire and the Social Comfort Scale) and only one burns-specific scale (the Children Burn Outcomes Questionnaire for children aged 5-18) had psychometric evidence relevant to this population. CONCLUSIONS: The majority of PROMs did not have psychometric evidence for their use with child or adolescent burn patients. To appropriately identify the needs and treatment progress of child and adolescent burn patients, new burns-specific PROMs need to be developed and validated to reflect issues that are of importance to this population.

Prognostic significance of positive peritoneal cytology in clinical stage I adenocarcinoma of the endometrium.

One hundred fifty-seven consecutive patients with clinical stage I endometrial adenocarcinoma who underwent primary surgical therapy between July 1979 and January 1986 were evaluated prospectively for malignant peritoneal cytology. No treatment was directed specifically for positive peritoneal cytology. Thirty patients (19%) had malignant peritoneal cytology. In univariate statistical analysis, positive cytology was significantly associated with depth of myometrial invasion (P = .02) and histopathology (P less than .025), but not with disease recurrence (P = .33). Recurrence developed in five (17%) of 30 patients with positive cytology and 11 (9%) of 127 patients with negative cytology. Using multivariate analysis, the presence of extrauterine disease spread other than lymph node metastasis was the only variable significantly associated with time to recurrence (P = .009). When patients with poor prognostic factors (grade 3 tumors, deep myometrial invasion, tumors larger than 2 cm, positive lymph nodes, and other extrauterine disease spread) were excluded from analysis, malignant peritoneal cytology still had no influence on time to recurrence. Of the five patients with positive peritoneal cytology who had disease recurrence, only one recurrence arose within the peritoneal cavity. The presence of positive peritoneal cytology in clinical stage I endometrial adenocarcinoma does not appear to have independent prognostic significance and probably should not influence treatment decisions in the absence of other poor prognostic factors.

A developmental study of children's stereotyping of facially deformed adults.

A frequent complaint of facially deformed people is that they are rejected by others. This study was designed to examine whether negative reactions to facially deformed people would be demonstrated by girls and boys aged 5-11 years. The children were asked to attribute positive or negative characteristics to photographs in which adults were shown before and after minor oral surgery. Despite the relatively small differences in appearance between each adult's before- and after-operation photographs, it was found that, whereas overall the younger children selected faces at around chance level (i.e. 50 per cent), the 11-year-olds on 75 per cent of occasions selected in response to questions concerning friendliness and helping (deemed 'positive') the after-operation photographs, and in response to questions concerning fear and anger (deemed 'negative') the before-operation photographs. When the children's own judgements of facial attractiveness were related to the faces they had chosen in response to positive and negative questions, while again for the five-year-olds only chance responding (50 per cent) was observed, by age seven 75 per cent, and by age 11 90 per cent, of choices suggested facial stereotyping.

Exploring the psychosocial concerns of outpatients with disfiguring conditions.

OBJECTIVE: This study was undertaken to establish the extent and type of psychosocial need in outpatients attending for treatment for a variety of disfiguring conditions. METHOD: A total of 220 outpatients receiving treatment for burns, skin conditions or head and neck cancer, together with those seeking plastic surgery for other appearance concerns, completed standardised measures of anxiety, depression, social anxiety and quality of life. Participants also completed a semi-structured interview exploring individual concerns and satisfaction with care. RESULTS: A considerable proportion of the outpatients with disfiguring conditions experienced psychosocial difficulties, displaying raised levels of anxiety, depression, social anxiety and social avoidance and reduced quality of life. Levels of psychosocial distress were not well predicted by the severity of disfigurement. CONCLUSION: The psychosocial needs of these patients are not well met in the outpatient setting. Recommendations are made on how patients' concerns might be more effectively addressed.

The psychological well-being and appearance concerns of patients presenting with ptosis.

PURPOSE: Ptosis affects both the function and appearance of the eyes and face, because of drooping of the eyelids. Previous research has focused on functional impairment; however, similar appearance altering eye conditions have been demonstrated to have major impacts on psychosocial functioning. METHODS: This study examines the psychological well-being and appearance concerns of patients presenting with ptosis recruited from Bristol Eye Hospital using validated questionnaires focusing on demographics and psychosocial factors before surgery. RESULTS: Patients reported higher levels of anxiety, depression, and appearance concern than population norms, with scores comparable to previous research examining the impact of other disfiguring eye conditions. Gender differences were observed, with almost half of females experiencing significant psychosocial issues related to appearance concern about their ptosis compared with 20% of males. Linear regressions revealed that the main predictor of poor adjustment to the appearance of ptosis was the level of concern an individual had regarding the negative perceptions of other people. These results implicate psychosocial factors and demographics as predictors of the development of appearance-related distress and compromised psychological well-being for patients with ptosis who are currently seeking surgery. CONCLUSIONS: This study provides clinicians with a greater understanding of the concerns of affected patients, and treatment motivations. The findings may also inform the development of patient reported outcome measures and support for patients, which targets the psychosocial impact of the condition.

Using service rationalisation to build a research network: lessons from the centralisation of UK services for children with cleft lip and palate.

In the UK around a thousand children are born annually with a cleft lip and/or palate that requires treatment. In the last decade services have been centralised in the UK reducing the 57 centres operating on these children in 1998, down to 11 centres or managed clinical networks in 2011. While the rationale for centralisation was to improve the standard of care (and in so doing the outcome) for children born with cleft lip and/or palate, research was central to this process. We illustrate how research informed and shaped this service rationalisation and how it facilitated the emergence of a research culture within the newly configured teams. We also describe how these changes in service provision were linked to the development of a national research strategy and to the identification of the resources necessary to support this strategy.

Mixed methods in health psychology: theoretical and practical considerations of the third paradigm.

This article has two purposes: to examine why mixed methods is a legitimate approach particularly well suited to health psychology; and to describe the challenges inherent in conducting mixed methods research. First, arguments justifying the status of mixed methods as a third paradigm alongside solely quantitative and qualitative frameworks are discussed. Second, a qualitatively driven model of mixed methods is illustrated using examples from a research programme exploring the psychosocial impact of a rare, genetic skin disorder. The flexibility of a mixed methods approach enables the researcher to be responsive to a range of issues, but it is important the approach is used thoughtfully and appropriately.

'You're whatever the patient needs at the time': the impact on health and social care professionals of supporting people with epidermolysis bullosa.

OBJECTIVES: Professionals working with people who encounter pain and suffering can experience adverse emotional effects themselves. However, to provide effective support it is necessary to understand specific work-related experiences and contexts. This study investigated the impact on professionals of supporting people with the skin condition 'epidermolysis bullosa'. METHODS: A two-part mixed methods design was utilized. Part one comprised interviews with specialist nursing and social care professionals (n = 7). Part two comprised a survey administered to a range of EB specialist professionals (n = 26). RESULTS: The interview data were analysed inductively and informed the survey design. The survey data were analysed deductively and compared to the interview findings. Three integrated themes were subsequently depicted: the intensity and depth of involvement; managing with limited resources; and the need to look after yourself. DISCUSSION: Findings show the ways in which the work can affect well-being and how the impact is intensified by the low numbers of specialist professionals in the field. But the support of team members, access to effective supervision and the rewards of working with a remarkable population make the professional role worthwhile. Adequate clinical supervision, skills training and access to multi-disciplinary expertise were all highlighted as beneficial for well-being.

Psychological aspects of breast reconstruction: a review of the literature.

AIM: This paper critically examines the research literature relating to the psychological aspects of breast reconstruction. Particular attention is given to the role of specialist breast care nurses in supporting women faced with the decision of whether or not to opt for reconstructive surgery. BACKGROUND: Breast reconstruction is intended to offer psychological benefits (e.g. improvements to quality of life, body image, anxiety and depression) to women treated by mastectomy following diagnosis of breast cancer. METHODS: A literature search was carried out on the PSYCHINFO, MEDLINE and CINAHL databases using the terms "breast reconstruction", "mastectomy", "reconstructive surgery", "breast surgery", "breast implants", "transverse rectus adominis myocutaneous (TRAM) flap" and "Lat-dorsi". Further relevant articles were identified from the reference lists of papers detected by this literature search. Finally, proceedings of recent psychological and surgical meetings were scrutinized to identify any conference papers on this topic. FINDINGS: A thorough search of the existing literature revealed a lack of theoretically based studies examining breast reconstruction in terms of relevant psychological constructs, especially in relation to coping and decision-making. This review highlights the methodological flaws with much of the existing research in this area, in particular the reliance upon retrospective designs and the inappropriate use of randomised controlled trials. Suggestions are given for further research in this topical area. CONCLUSIONS: Existing research into the psychological aspects of breast reconstruction is limited and not sufficiently conclusive to inform changes to policy and the provision of care. More methodologically rigorous research is needed.

An evaluation of the impact of social interaction skills training for facially disfigured people.

Facially disfigured people can experience significant psychological problems, commonly relating to difficulties in social interaction. The effect of social interaction skills workshops on the psychological well-being of 64 facially disfigured participants is described. Participants completed the Hospital Anxiety and Depression Scale (HAD), the Social Avoidance and Distress Scale (SAD) and an open-ended questionnaire, before a workshop and at 6 weeks and 6 months follow-up. The high levels of anxiety evident prior to the workshop fell significantly 6 weeks post-workshop (HSD = 1.297, P < 0.01) and remained significantly lower at 6 month follow-up (HSD = 1.563, P < 0.01). Similarly, SAD scores fell significantly at 6 weeks (HSD = 1.89, P < 0.05) and again at 6 month follow-up (HSD = 2.26, P < 0.01). 6 weeks post-workshop, participants reported feeling more confident in the company of strangers (HSD = -1.266, P < 0.01) and about meeting new people (HSD = -1.159, P < 0.01). This increase in confidence was maintained at 6 months (HSD = -1.068 and -1.042 respectively, P < 0.01 for both). 61% of those who experienced problems before the workshop reported a positive change in these situations. The potential of these workshops as an addition to surgical intervention is discussed.

Psychological aspects of cleft lip and palate.

In addition to the influences of family dynamics, educational and vocational factors on the social development and rehabilitation of CLP patients, psychological problems, such as lowered self-esteem and difficulties during social interaction, are also experienced by CLP individuals. As only 20 per cent of cleft teams world-wide carry out a psychological assessment for their patients, it is likely that the prevalence of psychological problems is higher than the literature suggests. To maximize the chances of a positive outcome in the care of cleft affected individuals, CLP patients who are concerned about their appearance or who experience psychosocial problems need to be identified by cleft teams. Interventions, such as counselling or social interaction skills training, should be offered in order that the patient's self-esteem and social self-confidence can be increased. Current research surrounding patient and parent satisfaction with cleft care suffers from several areas of methodological weakness.

Factors implicated in the decision whether or not to join the tamoxifen trial in women at high familial risk of breast cancer.

Why, given similar medical circumstances-high familial risk of breast cancer-will some women elect to join a trial of drugs designed to reduce that risk but others choose not to take part? The aim of this study was to identify measurable differences between women who elect to join a placebo-controlled, double-blind randomised trial of the drug tamoxifen and women who elect not to join. One hundred and six women attending a breast care clinic completed questionnaires covering demographic details, health locus of control, perception of risk and adequacy of medical communication. All were eligible for inclusion in the tamoxifen trial. Only half (n=53) of the sample elected to join, the other half (n=53) declined. Those who declined the trial were significantly more aware of lifestyle factors thought to influence the development of cancers-diet, exercise and oestrogen-prolonging activities (p<0.001), and they also appeared to find the information given by the hospital about tamoxifen harder to understand than did the group who had joined the trial (p=0.01). They could think of significantly fewer positive reasons for joining (p<0.001) and were significantly younger (p=0.001). Participants in both groups significantly overestimated the relative risks of breast cancer. The average estimation of risk for women aged 30 with a family history of breast cancer was 22 times higher than that given by their consultant. This gives rise to considerable concerns about the information underpinning informed consent.