Concerns and expectations in women with polycystic ovary syndrome vary across age and ethnicity: findings from PCOS Pearls Study.

Objective: To understand and explore the perceptions and opinions of women with polycystic ovary syndrome (PCOS) and further delineate the variations across age and ethnicity. Design: Qualitative survey focussed on lived experiences of people with PCOS. Participants could share their views either as written text or as voice note audio recording(s) on WhatsApp. The data from the audio were transcribed verbatim. Responses were coded by two study members independently, using a thematic inductive method with NVivo 12. Two senior study members then reviewed these codes to identify common themes. Subjects: Women with PCOS aged 18-60 years. Results: 43 of 45 participants had a formal diagnosis of PCOS, the remaining two had suspected PCOS which was under investigation. Four participants opted to share their views as voice note recordings. Poor mental health was the most reported (83.3% of participants), followed by dermatological (81.0%) and menstrual issues (76.2%). Participants were generally dissatisfied with the care they received (88.1%). A lengthy diagnostic journey was reported in 35.7% of cases. 52.6% felt less feminine, particularly regarding weight gain and infertility. As part of the recommendations by participants, it was emphasised that others with the condition should educate themselves and be proactive in their management. 46.3% reported that being more enlightened regarding their condition improved their health outcomes and enabled them to advocate for their own care. Women in their 20s expressed distress due to poor mental health, needing a longer time to get the diagnosis, and having weight and eating concerns. While women with PCOS in their 30s discussed their menstrual irregularities and fertility issues, those in their 40s expressed their concerns about the societal expectations of women when diagnosed with PCOS. The concerns varied across ethnicities as well. Conclusion: PCOS has wide-ranging consequences for women living with the condition, with many dissatisfied with the clinical support they currently receive. The concerns and expectations vary across ages and ethnicities. Therefore, we propose involving women with PCOS to co-create clinical and educational resources informed by lived experiences to provide end-user-informed services.

A qualitative study exploring the lived experiences of patients living with mild, moderate and severe frailty, following hip fracture surgery and hospitalisation.

It is well recognised that hip fracture surgery is associated with a negative impact on short and long-term post-operative physical health and emotional well-being for patients. Furthermore, these patients are known to be frail with multiple co-morbidities. This study explores how frailty shapes the lived experiences of rehabilitation and recovery for patients who have undergone hip fracture surgery. Semi-structured interviews were conducted with sixteen participants, recently discharged from hospital following hip fracture surgery. Interpretative phenomenological analysis was applied to explore the lived experiences of frail patients and ascertain important themes. Patient experiences were captured in seven overarching themes: 1) the hospital as a place of "safety", 2) placing trust in others, 3) the slow recovery journey impeded by attitude and support, 4) maintaining autonomy and dignity whilst feeling vulnerable, 5) seeking a new normal, 6) loneliness and social isolation and 7) the ageing body. Based on our study findings, we have been able to suggest a number of opportunities to improve support for frailer patients in finding a new routine to their everyday lives, these include on-going physical and psychological support, information and education and a robust pathway for transition of care into the community. A conceptual thematic diagram is presented which helps to understand the experience and the complex needs of frail older people undergoing hip fracture surgery.

A systematic review of lived experiences of people with polycystic ovary syndrome highlights the need for holistic care and co-creation of educational resources.

Introduction: PCOS-related literature is mostly dominated by the medical perspective. However, the condition's lifelong, far reaching, and multifaceted impacts highlight the importance to gain the perspectives from those with PCOS. Therefore, we performed a systematic review to explore the current literatures and gaps around the experiences and perceptions of those living with PCOS. Method: A comprehensive search of seven electronic databases was conducted between July and October 2021. A total 34 from 1615 screened articles were included in this systematic review and subsequently coded using NVivo 12 software. The quality of individual studies was assessed by adaptation to the Critical Appraisal Skills Program (CASP) quality assessment tool. Results: Five domains were generated from the data: Signs/Symptoms, Diagnosis, Management, Perceptions, Resources and Improving Outcomes. Dissatisfaction surrounding the experience of diagnosis was common. Concerns surrounded perceived lack of knowledge from healthcare professionals and delays in diagnosis. Individual studies on adults and adolescents shared similar feelings. The consensus was found to be that current management was vague and generalised. Symptoms such as hirsutism, obesity, irregular menstruation challenge personal and societal expectations of femininity. Online PCOS resources are popular amongst those with PCOS but most of them lack evidence. A call for more culturally specific resources was found to be common ground amongst those with PCOS. Conclusion: Overall dissatisfaction amongst adults and adolescents regarding their diagnostic journey of PCOS. Tailored and culturally specific PCOS advice and management is necessary and can be achieved through co-creation of resources between healthcare professionals and those with PCOS. Systematic review registration: https://www.crd.york.ac.uk/prospero/, identifier CRD42021272371.

A meta-ethnography of adult smokers' exploring the meanings of tobacco dependency medications adherence behaviours during smoking cessation.

AIMS: To synthesize the experiences and adherence of adult smokers' with tobacco dependence medications. DESIGN: Meta-ethnography. DATA SOURCES: Seven bibliographic databases were systematically searched until April 2016. REVIEW METHODS: A standardized appraisal tool evaluated the quality of the selected studies. RESULTS: Seven studies met the eligibility criteria. Three major themes described the experiences and adherence of adult smokers' with tobacco dependence medications; the psychosocial context, predilection for willpower and "natural" methods and a tendency to resist medications. CONCLUSION: The findings of this meta-ethnography are important to future clinical practice guideline development so health professionals contribute effectively to further reduction in smoking prevalence. Further research is needed to understand resistance to tobacco dependence medications and to inform the design of person-tailored interventions to improve tobacco dependence medication adherence that can be incorporated into smoking cessation interventions. IMPACT: Smoking causes more death and disability in the world than any other avoidable factor. Research on smoker perspectives on tobacco dependence medications is sparse. Tobacco dependency is a unique treatment context with specific adherence issues. Smokers are active decision-makers regarding tobacco dependence medications. Inconsistent adherence to tobacco dependency medication regimens was apparent. Implications for health professionals, healthcare policy and clinical practice guidelines regard the structure of consultations with smoking patients. It is critical for all health professionals to assess the person seeking to stop smoking and foresee the possible causes of non-adherence behaviour. Addressing non-adherence will to lead to more effective health communications and positively contribute to quality of smoking cessation care.

Investigating the impact of headaches on the quality of life of patients with glioblastoma multiforme: a qualitative study.

OBJECTIVES: Headaches and facial pain have been identified as the most prevalent form of pain among patients with glioblastoma multiforme, the most common malignant primary brain tumour. Despite this, minimal research has been undertaken investigating the direct and indirect impact these headaches have on their quality of life. Therefore, in this study, we aimed at gaining a personal insight into the importance and impact that these headaches have on the quality of life of patients with glioblastoma multiforme. DESIGN: Exploratory study using face-to-face semistructured interviews. Interviews were audio-recorded, transcribed verbatim and then qualitatively analysed using thematic analysis. SETTING: Participants recruited from a tertiary referral hospital in Birmingham, UK. PARTICIPANTS: Purposive sampling of 14 registered outpatients recently diagnosed with glioblastoma multiforme. RESULTS: 3 themes were identified: (1) an underlying attitude of determination and positivity; (2) impact of headache unpredictability on social interaction; (3) headaches found to act as a springboard onto thoughts regarding their disease and future. CONCLUSIONS: While the quality of life of patients with glioblastoma multiforme is clearly multifactorial, headaches do indeed play a part for some. However, it is not the direct pain of the headache as one might expect that impacts on the quality of life of these patients, but the indirect effect of headaches through limiting patients' social lives and by serving as a painful psychological reminder of having a life-threatening illness. In clinical practice, using headache diaries for these patients may help provide a more comprehensive assessment and further aid management plans. Alongside acting as an important reminder of the potential secondary implications of this disease, suggestions for future research include quantitatively investigating whether headaches can act as a prognostic indicator for quality of life within this patient demographic and determining whether these conclusions also hold true for a wider spectrum of patients with brain tumour.

Influence of primary care practices on patients' uptake of diabetic retinopathy screening: a qualitative case study.

BACKGROUND: The NHS Diabetic Eye Screening Programme aims to reduce the risk of sight loss among people with diabetes in England by enabling prompt diagnosis of sight-threatening retinopathy. However, the rate of screening uptake between practices can vary from 55% to 95%. Existing research focuses on the impact of patient demographics but little is known about GP practice-related factors that can make a difference. AIM: To identify factors contributing to high or low patient uptake of retinopathy screening. DESIGN AND SETTING: Qualitative case-based study; nine purposively selected GP practices (deprived/affluent; high/low screening uptake) in three retinopathy screening programme areas. METHODS: Semi-structured interviews were conducted with patients, primary care professionals, and screeners. A comparative case-based analysis was carried out to identify factors related to high or low screening uptake. RESULTS: Eight possible factors that influenced uptake were identified. Five modifiable factors related to service and staff interactions: communication with screening services; contacting patients; integration of screening with other care; focus on the newly diagnosed; and perception of non-attenders. Three factors were non-modifiable challenges related to practice location: level of deprivation; diversity of ethnicities and languages; and transport and access. All practices adopted strategies to improve uptake, but the presence of two or more major barriers made it very hard for practices to achieve higher uptake levels. CONCLUSIONS: A range of service-level opportunities to improve screening attendance were identified that are available to practices and screening teams. More research is needed into the complex interfaces of care that make up retinopathy screening.

Appearance concerns and psychosocial adjustment following head and neck cancer: A cross-sectional study and nine-month follow-up.

Psychosocial difficulties have been reported in head and neck cancer (HNC) patients, yet only few studies have assessed the impact of altered appearance following HNC treatment using theoretically selected measures of appearance-related distress. This study investigated appearance-related adjustment following HNC, and demographic and socio-cognitive predictors of adjustment. HNC patients (n=49) completed baseline questionnaires and a nine-month postal follow-up (n=20). Participants showed considerable variation in appearance-related adjustment, with females reporting higher levels of appearance-related distress (derriford appearance scale [DAS-24]) than females in the general population and male HNC survivors. Depression scores on the hospital anxiety and depression scale were higher than UK norms whilst anxiety was similar to UK norms. There were no significant differences between baseline and follow-up data. Fear of negative evaluation (a central feature of social anxiety) was a significant predictor of appearance-related adjustment at baseline, whilst dispositional optimism was a significant predictor of appearance-related adjustment at baseline and follow-up. Qualitative responses showed themes of appearance and disability, and coping strategies. Findings suggest that appearance-related adjustment post-HNC varies considerably and psychosocial services working with HNC patients should consider this broad pattern of response. Future research to examine the role of socio-cognitive predictors of appearance-related adjustment could progress development of effective psychological interventions.

Patient engagement with a diabetes self-management intervention.

OBJECTIVES: To explore how people living with type 2 diabetes self-manage their condition in everyday life and the impact of the Diabetes Manual programme, a one-to-one structured educational intervention aiming to increase skills and confidence for self-management. METHOD: Semi-structured interviews with 12 participants on the Diabetes Manual trial, sampled purposively according to baseline self-efficacy and educational attainment. RESULTS: When describing their experience of living with diabetes, there was little difference between intervention and control participants, although those who had received the programme talked more about the use of blood glucose self-assessment. Programme users were grouped into three categories, Programme Engagers (n = 2), Programme Browsers (n = 4) and Information Seekers (n = 6). Of the two participants engaging with the programme, one described a very positive experience, the other felt unsupported by their practice. None noticed a difference in the approach used by their health professional. Participants' approach to the Diabetes Manual programme suggests they will continue to use it as a resource in the future. CONCLUSION: Participants used the Diabetes Manual programme in different ways, choosing the timing and depth of engagement. Their experience suggests that the programme requires close communication and openness towards collaborative approaches to improve skills and confidence for self-management.

Oral and maxillofacial surgery and chronic painful temporomandibular disorders--a systematic review.

PURPOSE: To provide a systematic review of the best available research literature investigating the relation of oral and maxillofacial surgical procedures to the onset or relief of chronic painful temporomandibular disorder (TMD). MATERIALS AND METHODS: A comprehensive review of the databases CINAHL, Cochrane Library, Embase, Medline, NHS Evidence--Oral Health, PsycINFO, Web of Knowledge, and MetaLib was undertaken by 2 authors (P.S., M.H.) up to June 2009 using search terms appropriate to establishing a relation between orofacial surgical procedures and TMD. The search was restricted to English-language publications. RESULTS: Of the 1,777 titles reviewed, 35 articles were critically appraised but only 32 articles were considered eligible. These were observational studies that fell into 2 groups; 9 were seeking to establish a surgical cause for TMD. Of these, only 2 of a series of 3 claimed that there was a significant link, but this claim was based on weak data (health insurance records) and was abandoned in a subsequent report. Twenty-three studies were seeking to achieve relief by orthognathic surgical intervention. These were also negative overall, with 7 articles showing varying degrees of mostly nonsignificant improvement, whereas 16 showed no change or a worse outcome. No published report on the putative effect of implant insertion was found. CONCLUSION: These apparently contradictory approaches underline a belief that oral surgical trauma or gross malocclusion has a causative role in the onset of TMD. However, there was no overall evidence of a surgical causal etiology or orthognathic therapeutic value. This review emphasizes that it is in the patients' best interest to carry out prospective appropriately controlled randomized trials to clarify the situation.

Peer support telephone calls for improving health.

BACKGROUND: Peer support telephone calls have been used for a wide range of health-related concerns. However, little is known about their effects. OBJECTIVES: To assess the effects of peer support telephone calls in terms of physical (e.g. blood pressure), psychological (e.g. depressive symptoms), and behavioural health outcomes (e.g. uptake of mammography) and other outcomes. SEARCH STRATEGY: We searched: The Cochrane Library databases (CENTRAL, DARE, CDSR) (issue 4 2007); MEDLINE (OVID) (January 1966 to December 2007); EMBASE (OVID) (January 1985 to December 2007); CINAHL (Athens) (January 1966 to December 2007), trials registers and reference lists of articles, with no language restrictions. SELECTION CRITERIA: Randomised controlled trials of peer support interventions delivered by telephone call. DATA COLLECTION AND ANALYSIS: Two review authors independently extracted data. We present results narratively and in tabular format. Meta-analysis was not possible due to heterogeneity between studies. MAIN RESULTS: We included seven studies involving 2492 participants.Peer support telephone calls were associated with an increase in mammography screening, with 49% of women in the intervention group and 34% of women in the control group receiving a mammogram since the start of the intervention (P 12). The peer support intervention significantly decreased depressive symptomatology at the 4-week assessment (odds ratio (OR) 6.23 (95% confidence interval (CI) 1.15 to 33.77; P = 0.02)) and 8-week assessment (OR 6.23 (95% CI 1.40 to 27.84; P = 0.01). One study investigated the use of peer support for patients with poorly controlled diabetes. There were no significant differences between groups for self-efficacy, HbA1C, cholesterol level and body mass index. AUTHORS' CONCLUSIONS: Whilst this review provides some evidence that peer support telephone calls can be effective for certain health-related concerns, few of the studies were of high quality and so results should be interpreted cautiously. There were many methodological limitations thus limiting the generalisability of findings. Overall, there is a need for further well designed randomised controlled studies to clarify the cost and clinical effectiveness of peer support telephone calls for improvement in health and health-related behaviour.

Family health narratives: midlife women's concepts of vulnerability to illness.

Perceptions of vulnerability to illness are strongly influenced by the salience given to personal experience of illness in the family. This article proposes that this salience is created through autobiographical narrative, both as individual life story and collectively shaped family history. The article focuses on responses related to health in the family drawn from semi-structured interviews with women in a qualitative study exploring midlife women's health. Uncertainty about the future was a major emergent theme. Most respondents were worried about a specified condition such as heart disease or breast cancer. Many women were uncertain about whether illness in the family was inherited. Some felt certain that illness in the family meant that they were more vulnerable to illness or that their relatives' ageing would be mirrored in their own inevitable decline, while a few expressed cautious optimism about the future. In order to elucidate these responses, we focused on narratives in which family members' appearance was discussed and compared to that of others in the family. The visualization of both kinship and the effects of illness led to strong similarities being seen as grounds for worry. This led to some women distancing themselves from the legacies of illness in their families. Women tended to look at the whole family as the context for their perceptions of vulnerability, developing complex patterns of resemblance or difference within their families.