A Core set of patient-reported outcome measures to measure quality of life in obesity treatment research.

The lack of standardization in patient-reported outcome measures (PROMs) has made measurement and comparison of quality of life (QoL) outcomes in research focused on obesity treatment challenging. This study reports on the results of the second and third global multidisciplinary Standardizing Quality of life measures in Obesity Treatment (S.Q.O.T.) consensus meetings, where a core set of PROMs to measure nine previously selected patient-reported outcomes (PROs) in obesity treatment research was established. The S.Q.O.T. II online and S.Q.O.T. III face-to-face hybrid consensus meetings were held in October 2021 and May 2022. The meetings were led by an independent moderator specializing in PRO measurement. Nominal group techniques, Delphi exercises, and anonymous voting were used to select the most suitable PROMs by consensus. The meetings were attended by 28 and 27 participants, respectively, including a geographically diverse selection of people living with obesity (PLWO) and experts from various disciplines. Out of 24 PROs and 16 PROMs identified in the first S.Q.O.T. consensus meeting, the following nine PROs and three PROMs were selected via consensus: BODY-Q (physical function, physical symptoms, psychological function, social function, eating behavior, and body image), IWQOL-Lite (self-esteem), and QOLOS (excess skin). No PROM was selected to measure stigma as existing PROMs deemed to be inadequate. A core set of PROMs to measure QoL in research focused on obesity treatment has been selected incorporating patients' and experts' opinions. This core set should serve as a minimum to use in obesity research studies and can be combined with clinical parameters.

"Treated as second class citizens" - the lived experience of obesity-related stigma: an IMI2 SOPHIA study.

PURPOSE: Obesity-related stigma impacts on and shapes the physical and psychosocial wellbeing of individuals living with obesity. Often absent from the literature in the field is the voice(s) of those living with obesity capturing the nuances of the lived experiences of obesity-related stigma. METHODS: This study adopted a qualitative approach encompassing individual (n = 15) and photovoice method (n = 12), with a purposeful sample of patients accessing treatment for obesity within the healthcare setting during 2021. Analysis was undertaken using thematic analysis. RESULTS: Key themes developed from the analysis related to experiencing obesity-related stigma as exposure to external judgement, societal exclusion and felt environmental stigmatization. Exposure to external judgement was described as judgemental comments resulting in hypervigilance to societal judgement. Participants reported how being overlooked and ignored by others had various negative effects and compounded obesity-related stigma through societal exclusion. Public spaces lacking suitable equipment further made obesity-related stigma visible through felt environmental stigmatization when pursuing hobbies and in everyday life. CONCLUSIONS: Obesity-related stigma had a profoundly negative impact on participants in this study, particularly in shaping social interaction, limiting life experiences and impacting psychosocial wellbeing.

Changing the global obesity narrative to recognize and reduce weight stigma: A position statement from the World Obesity Federation.

Weight stigma, defined as pervasive misconceptions and stereotypes associated with higher body weight, is both a social determinant of health and a human rights issue. It is imperative to consider how weight stigma may be impeding health promotion efforts on a global scale. The World Obesity Federation (WOF) convened a global working group of practitioners, researchers, policymakers, youth advocates, and individuals with lived experience of obesity to consider the ways that global obesity narratives may contribute to weight stigma. Specifically, the working group focused on how overall obesity narratives, food and physical activity narratives, and scientific and public-facing language may contribute to weight stigma. The impact of weight stigma across the lifespan was also considered. Taking a global perspective, nine recommendations resulted from this work for global health research and health promotion efforts that can help to reduce harmful obesity narratives, both inside and outside health contexts.

Language Frames and Shapes the Response to Obesity.

Because the scientific understanding of obesity has grown, explicit expressions of weight bias have steadily become less acceptable. However, implicit weight bias and stigma remain common impediments to health. Language frames the public perception of obesity. It is problematic when public discourse or scientific publications reflect misinformation or bias against people with obesity because this can promote stigma and barriers to health. Examples of stigmatizing language include descriptions of obesity as an identity rather than a disease, language that describes obesity as a crisis or a cause for panic, and excessive focus on weight or appearance rather than health outcomes.

Stratification of obesity phenotypes to optimize future therapy (SOPHIA).

INTRODUCTION: Obesity is considered a poor lifestyle choice. 'Obesity' is not a sufficient definition for patients, any more than 'cancer' or 'arthritis' would be. A major obstacle is the lack of understanding of pathogenesis. The disease of obesity is considered homogenous, while response to treatment is thought of as heterogeneous. This can change if pathogenesis, risk profiles for complications, and treatment responses are viewed within the context of obesity consisting of several subsets of disease. AREAS COVERED: The European Union-funded Innovative Medicine Initiative project Stratification of Obesity Phenotypes to Optimize Future Obesity Therapy is part of a momentum shift. Operational variables are being used to develop tests and therapies which may allow the prediction of risk of obesities and the prediction of response to obesity treatments. However, changing stakeholder perspectives on obesity may require more than high-quality data and analysis. EXPERT OPINION: For patients to benefit, clinicians need to integrate evidence-based treatments and payers need to reimburse the management of the disease of obesity. This will generate commercial opportunities for industry. We need to involve stakeholders (patients, clinicians, regulators, payer, patient organisations) to create a shared value for mutual gain.

Development of an Assessment Tool for Completion by Patients with Overweight or Obesity.

INTRODUCTION: Discussions of weight-management strategies between patients and healthcare providers can yield positive outcomes for people with overweight or obesity. Nonetheless, people with overweight or obesity encounter communication challenges and other barriers to pursuing effective weight-management strategies with their healthcare providers. The aim of this study was to develop a new self-completed assessment tool to initiate and facilitate conversations related to weight management between patients and healthcare providers. METHODS: Developing the assessment tool involved a series of steps and draft versions of the tool, based on feedback from key opinion leaders in the field of obesity (N = 4) and input from people with overweight or obesity (N = 18). Three iterative rounds of qualitative interviews were conducted in the USA. A targeted review of prior qualitative research was conducted to identify common and important impacts of obesity on patients' functioning. Standard qualitative analytical methods were used to identify concepts of importance in a concept elicitation exercise during the interviews and were evaluated for potential inclusion in the tool. Potential problems with the tool were flagged during cognitive debriefing of the draft tool. RESULTS: During 18 individual interviews, participants referenced the impact of their weight on their lives, including health and comorbidities, physical function, emotional/mental functioning, social life, and physical appearance. Over the course of the tool's development, 24 common and important impacts of obesity on patients' functioning were reduced to a final set of eight concepts in the final tool that were deemed important and relevant to both patients and key opinion leaders. CONCLUSIONS: The assessment tool is a five-item, self-completed measure expected to foster patient self-advocacy for individuals with overweight or obesity by giving them an opportunity to define their weight-management goals and discuss these, along with various medical interventions, with a healthcare provider.

At home and at risk: The experiences of Irish adults living with obesity during the COVID-19 pandemic.

Background: People living with obesity are at elevated risk of hospitalisation, serious illness and mortality due to COVID-19. Little is known about their experience of living with obesity during the pandemic and its associated stay-at-home orders. This study sought to understand the experiences of people living with obesity during the COVID-19 pandemic. Methods: A stratified sample of Irish adults (n = 15) living with obesity engaged in open, phenomenological, interviews and a participatory photovoice methodology to capture both verbal and visual accounts of their experiences during the COVID-19 pandemic. Interviews, conducted throughout 2021, were transcribed verbatim and analysed thematically. Findings: Two overarching themes were identified. A) The pandemic and associated stay-at-home orders had a positive impact on the health and well-being of some participants; a negative impact on others; and this impact changed over time as the pandemic progressed. B) People living with obesity reported feeling stigmatised and 'othered' by their 'at risk' categorisation. Public health messaging and public discourse relating to obesity resulted in some people feeling segregated and punished by society. Interpretation: Changes in lifestyle initiated by the pandemic's stay-at-home orders had a varied impact on the health behaviours and outcomes of people with obesity. This variance offers helpful insight into the psychosocial aspects of obesity. Furthermore, the 'othering' effect of public health messaging during the pandemic warrants caution in light of the already stigmatised nature of this disease. Funding: This study is part of the SOPHIA project which received funding from the Innovative Medicines Initiative 2 Joint Undertaking under grant agreement No 875534.

The lived experience of patients with obesity: A systematic review and qualitative synthesis.

Although the deleterious effects of obesity have been well documented in terms of morbidity and mortality, less is known about what it is like to live with this complex and chronic disease. This study systematically reviewed and synthesized peer-reviewed studies relating to the lived experience of patients with obesity. A total of 12,388 records were screened, resulting in the inclusion of 32 final studies. Meta-ethnographic synthesis of these 32 studies generated five "third-order constructs" or themes: the development of obesity; a life limited; stigma, judgment, shame, and blame; treatment and; experiences of specific or minority groups. These constructs describe, from the patient's perspective, the factors associated with the development and maintenance of obesity; the effects of the disease on their day-to-day lives; the impact of the stigma and judgment many patients are subjected to; and their experience of accessing, or trying to access, treatment for their healthcare needs. This synthesis reveals the dearth of studies that focus solely on the experience of the patient and highlights the tendency for participant-informed, rather than participatory, methods in obesity research. It concludes with a call for further participatory research into the experiences of people living with obesity.

The lived experience of people with obesity: study protocol for a systematic review and synthesis of qualitative studies.

BACKGROUND: Obesity is a prevalent, complex, progressive and relapsing chronic disease characterised by abnormal or excessive body fat that impairs health and quality of life. It affects more than 650 million adults worldwide and is associated with a range of health complications. Qualitative research plays a key role in understanding patient experiences and the factors that facilitate or hinder the effectiveness of health interventions. This review aims to systematically locate, assess and synthesise qualitative studies in order to develop a more comprehensive understanding of the lived experience of people with obesity. METHODS: This is a protocol for a qualitative evidence synthesis of the lived experience of people with obesity. A defined search strategy will be employed in conducting a comprehensive literature search of the following databases: PubMed, Embase, PsycInfo, PsycArticles and Dimensions (from 2011 onwards). Qualitative studies focusing on the lived experience of adults with obesity (BMI >30) will be included. Two reviewers will independently screen all citations, abstracts and full-text articles and abstract data. The quality of included studies will be appraised using the critical appraisal skills programme (CASP) criteria. Thematic synthesis will be conducted on all of the included studies. Confidence in the review findings will be assessed using GRADE CERQual. DISCUSSION: The findings from this synthesis will be used to inform the EU Innovative Medicines Initiative (IMI)-funded SOPHIA (Stratification of Obesity Phenotypes to Optimize Future Obesity Therapy) study. The objective of SOPHIA is to optimise future obesity treatment and stimulate a new narrative, understanding and vocabulary around obesity as a set of complex and chronic diseases. The findings will also be useful to health care providers and policy makers who seek to understand the experience of those with obesity. SYSTEMATIC REVIEW REGISTRATION: PROSPERO CRD42020214560 .

Measuring What Matters: Beyond Quality Performance Measures in Caring for Adults with Obesity.

Obesity is a chronic disease that poses serious health and societal burdens. Although guidelines exist for obesity management in primary care, evaluating the success of obesity treatment programs is hampered by lack of established, robust quality measures. This study aimed to develop, and test for feasibility, measures for operational tracking, quality performance, and patient-centered care in the context of a national collaborative to develop a model for obesity management in the US primary care setting. The authors developed and evaluated 7 measures used to track the care of patients with overweight or obesity (n = 226,727 at baseline) receiving care within 10 health care organizations (HCOs). Measure categories included: (1) operational tracking (obesity/overweight prevalence and prevalence of obesity-related complications); (2) quality performance (obesity diagnosis, change in weight over time, anti-obesity medication prescriptions, and assessment of obesity-related complications); and (3) patient-centered care (patient-reported outcomes). Measures were tested for feasibility, variability across HCOs, ability to detect differences over time, and value to the HCOs. All measures were feasible to collect, provided value to the participating HCOs, and demonstrated variation and ability to detect differences over time (eg, rates of documented diagnosis of obesity classes 1, 2, and 3 increased from 29%, 46%, and 66%, respectively, at baseline to 35%, 53%, and 71% at study end). This study confirmed the feasibility and perceived value of 7 operational, performance, and patient-centered measures collected in primary care practices in 10 HCOs over an 18-month period.

Joint international consensus statement for ending stigma of obesity.

People with obesity commonly face a pervasive, resilient form of social stigma. They are often subject to discrimination in the workplace as well as in educational and healthcare settings. Research indicates that weight stigma can cause physical and psychological harm, and that affected individuals are less likely to receive adequate care. For these reasons, weight stigma damages health, undermines human and social rights, and is unacceptable in modern societies. To inform healthcare professionals, policymakers, and the public about this issue, a multidisciplinary group of international experts, including representatives of scientific organizations, reviewed available evidence on the causes and harms of weight stigma and, using a modified Delphi process, developed a joint consensus statement with recommendations to eliminate weight bias. Academic institutions, professional organizations, media, public-health authorities, and governments should encourage education about weight stigma to facilitate a new public narrative about obesity, coherent with modern scientific knowledge.

Awareness, Care and Treatment In Obesity maNagement to inform Haemophilia Obesity Patient Empowerment (ACTION-TO-HOPE): Results of a survey of US patients with haemophilia and obesity (PwHO) and their partners and caregivers.

BACKGROUND: The ACTION study identified barriers to initiating and maintaining weight loss in patients with obesity; however, joint-related issues (pain, mobility and bleeding) may affect perceptions of patients with haemophilia and obesity (PwHO). AIM: To identify patient and caregiver insights on the unique challenges of PwHO. METHODS: Following IRB approval, adults who self-identified as PwHO, spouses/partners of adult PwHO, and caregivers of adolescent PwHO (aged 12-17 years) completed an online survey between December 2017 and April 2018. RESULTS: Respondents included 124 adult PwHO, 45 spouses/partners and 42 caregivers. By calculated BMI, most adults were overweight (43%) or had obesity (51%); this differed from self-reported weight category. PwHO goals were improving health conditions (60%), having more energy (54%), reducing risks of weight (46%), and losing any weight (44%). Issues related to joint health were secondary for PwHO but frequently reported by spouses/parents. Most perceived weight loss to be a high priority (66%) and their responsibility (64%) but required a complete lifestyle change (63%). Most anticipated that weight loss would reduce joint pain (62%), bleeding (58%) and factor use (52%) and increase mobility (62%). Weight discussions with healthcare providers (HCPs) were commonly reported (51%). HCP discussions targeted improving health conditions (46%), achieving any weight loss (44%), being more active (73%) and improving eating habits (72%). Most PwHO (65%) perceived obesity as a disease and believe that 10% weight loss would be extremely beneficial (78%). In the past 5 years, 80% discussed being overweight and 68% losing weight; a minority reported being successful (9%) or somewhat successful (38%) with weight loss. More realistic or specific (51%/47%) goals, resources (46%), referrals to weight-loss programmes (41%) or dietitians (38%), meals or recipes (54%/50%), local or national (42%/41%) programmes for PwHO and success stories of PwHO (40%) are needed or would be helpful. CONCLUSIONS: PwHO, spouse/partners and caregivers exhibited awareness of general and haemophilia-specific consequences of excess body weight. Most have tried general approaches to improve eating and increase activity with little success and desire more education on weight management and more details on specific actionable recommendations distributed through existing haemophilia channels. These insights will better inform the creation of weight-loss programmes for this community.

Correction to: Understanding the Bariatric Patient Perspective in the National Patient-Centered Clinical Research Network (PCORnet) Bariatric Study.

In the original article the list of author names and affiliations were incorrect.

Understanding the Bariatric Patient Perspective in the National Patient-Centered Clinical Research Network (PCORnet) Bariatric Study.

BACKGROUND: In 2016, the Patient-Centered Outcomes Research Institute funded the National Patient Centered Clinical Research Network (PCORnet) Bariatric Study (PBS). Understanding the experience of postoperative patients was a key component of this study. METHODS: Nine focus groups were conducted in Southern California, Louisiana, Pennsylvania, and Ohio and in a national advocacy conference for patients with obesity. Participants were identified and recruited in both clinical and community settings. Focus group transcripts were analyzed using an iterative inductive-deductive approach to identify global overarching themes. RESULTS: There were 76 focus group participants. Participants were mostly women (81.4%), had primarily undergone gastric sleeve (47.0%), were non-Hispanic white (51.4%), had some college education (44.3%), and made $100,000 annual income or less (65.7%). Qualitative findings included negative reactions patients received from friends, family, and co-workers once they disclosed that they had bariatric surgery to lose weight; and barriers to follow-up care included insurance coverage, emotional and situational challenges, and physical pain limiting mobility. CONCLUSIONS: These findings confirm the other qualitative findings in this area. The approach to bariatric surgery should be expanded to provide long-term comprehensive care that includes in-depth postoperative lifetime monitoring of emotional and physical health.

Obesity Stigma and Bias.

Overweight and obesity are escalating in epidemic proportions in the United States. Individuals with overweight and obesity are often reluctant to seek medical help, not only for weight reduction but also for any health issue because of perceived provider discrimination. Providers who are biased against individuals with obesity can hinder our nation's effort to effectively fight the obesity epidemic. By addressing weight bias in the provider setting, individuals affected by obesity may be more likely to engage in a meaningful and productive discussion of weight. Providers need to be the go-to source for obesity-focused information on new and emerging treatments.