Five themes emerged on factors that influence patients’ choice for specific treatments for obesity from the World Café which were 1) lack of resources, 2) lack of knowledge from HCPs, 3) lack of understanding, 4) emotional impact, and 5) support needs. The World Café results were consistent with the existing themes that emerged from the previous two study components of one-to-one interviews [14] and Photovoice [15]. The process of triangulation resulted in four main themes being identified which were structural factors, physical and emotional impact, knowledge (of HCPs and patients), and support needs.
Two significant sub-themes highlighted by participants in the World Café study were access to treatment options for obesity and the cost associated with treatment options. A major barrier was a lack of access to treatments for obesity such as nutritional therapy, pharmacotherapy, or surgical therapy. The lack of resources would often manifest as a sporadic referral to a dietitian. Participants who were considering bariatric surgery reported that HCPs would usually respond by suggesting they try harder or that they could try to have surgery abroad because the waiting time for surgery in the public system was exceptionally long. Having surgery privately was an option but the cost was often prohibitive. Pharmacotherapy was even more challenging to access. Patients without diabetes had to pay privately even if they had other complications from obesity. This prevented many participants from benefiting from this treatment. All the above are barriers experienced by patients trying to seek treatment.
In addition, the lack of consistency in care was not helpful, especially because by the time patients were asking their HCP for help, they had already tried many other options, often including commercial weight loss programmes. This resonates with recent research by Kim et al. who outlined barriers to obesity care including misinformation, insufficient training in obesity, and a lack of recognition of obesity as a disease and cost [18]. Cost was a major influencing factor. Rutstein et al. outlined that while cost-effective analysis is a useful tool for evaluating health-related interventions in resources-limited settings may violate the ethical principles of equity and distributive justice conflicting with societal values [17].
Patients may have different perspectives on what they want for their healthcare and their quality of life, and this can be influenced by their knowledge and the impact of their disease [19]. A lack of mobility, and deterioration in different complications such as diabetes, were key motivators to consider pharmacotherapy or surgery. Mobility particularly affected participants when attempting to go shopping, work, or do activities with their children. Obesity is a disease associated with a higher risk of anxiety and depression. Anxiety was repeatedly highlighted as impacting their quality of life, which motivated them to gain advice from their HCPs regarding treatment options to improve their health [20]. Furthermore, the constant medical appointments reminded patients that their lives were limited because of their obesity and its complications. From a patient’s perspective, it appeared that many HCPs had limited knowledge about obesity treatment options. This meant patients did not receive appropriate help to decide on treatment options [21, 22]. In addition, some participants experienced obesity stigma from the HCP which affected their engagement in seeking care. A lack of knowledge about treatment options as well as experiencing a lack of knowledge on the part of their HCPs was a barrier to the participants attempting to choose treatments.
Participants had difficulty accessing appropriate, curated information about the disease of obesity. This raised concerns about health literacy. Benjamin R et al. (2010) outlined that limited health literacy can affect the patient in several ways including challenges in explaining symptoms or to follow self-care instructions [23]. The European Health Literacy Survey (HLS-EU) conducted in eight countries: Austria, Bulgaria, Germany, Greece, Ireland, the Netherlands, Poland, and Spain found that 47% (1 in 2) of Europeans have limited levels of health literacy [24, 25]. They found that this has significant implications for patient health outcomes, health behaviours, equity of access to health services, health service utilisation, and public health expenditure [24, 25]. Bridging the gap between information received, understanding it, and how to implement it is essential for patients and requires HCPs to communicate and support better knowledge exchange [23]. There is a need for a strategy to address the knowledge gaps of HCPs at every level regarding treatments for their chronic diseases.
Another key influencing factor for participants was the vital need for support. Support from family, friends, community, and their HCPs enables better decision-making regarding treatment options. Patients discussed the challenges they had managing their disease and complications not just from a physical aspect, but an emotional one as well. Patients expressed the need for tangible psychosocial support and HCP support as two key areas that would facilitate decision-making regarding treatments [26]. Support works best when it is done collaboratively with the HCP and the patient [26]. Including a framework that allows the patient and HCPs to incorporate their values and beliefs can help establish the best course of action for each patient [8]. This involves partnerships between HCPs and patients with obesity and improves healthcare quality and outcomes [27]. The advantage is that the medical teams will know the wants and needs of the patients, thus helping them to understand the concerns of each patient [28]. This increases patients’ autonomy so that they can make treatment decisions best suited to them based on their values and needs [2]. While the concept of integrating patients’ wishes is just gaining momentum, there is currently limited research on how to best involve patients with obesity in evidence-based decision-making, particularly in terms of engaging patients in decision-making about treatment and interpretation of their health [28].
Taking patient preferences for treatment options into consideration when identifying their treatment plan might play an important role in the successful management of chronic disease in patients with obesity complications, as patients become more informed and have a sense of control over their health. Quality in healthcare involves reviewing patient experiences, satisfaction, and outcomes [29]. Integrating patients’ wishes into decision-making facilitates a patient-centred approach that can improve the effectiveness of interventions. This could be valuable for patients because this collaborative decision-making process might help all parties consider the factors that will enhance the quality of life for each patient as obesity affects a patient’s mental and physical well-being [29]. Patients with chronic diseases driven by obesity are almost a hidden group, as they attend multiple clinics managing multiple diseases driven by obesity. There is a deficit of information on patient’s preferences. This study looked at their treatment preference to represent their voice in what their experiences, satisfaction, and hopeful outcomes maybe if they had input in the treatment pathway discussion.
In our review of the literature, the themes identified such as knowledge, support, cost, and physical and emotional impacts all resonate with the views and experiences the patients expressed in our study. Patients with obesity complications are put into the chronic disease category and attend multiple clinics for these conditions but expressed there was no cohesion in their care especially if their conditions were driven by obesity. For example, cost was a recurring theme in the literature. In Kyle et al. cost was seen as a barrier, particularly with a younger age group of 44.7% compared with 20.7% of older adults [30] citing it as a main issue. Craig et al. found that cost was an important factor in influencing decision-making for treatments for intentional weight loss, especially considering choosing medication as this would be a lifelong treatment [31]. Some participants who were prescribed anti-obesity medications did not adhere to them as the participants couldn’t afford it [14]. Tang et al. (2018) reviewed the factors affecting the choice of bariatric surgery and found that those whose health insurance covered the cost had a higher rate of acceptance of bariatric surgery than those who had to pay out-of-pocket [32]. In addition, the cost was seen as a factor in healthy eating as Manning et al. found that the cost of more nutritious foods was also a barrier to participating in lifestyle interventions for treating obesity [33]. Discussing the practical side from monetary costs to care coordination might assist in establishing how to support patients’ preferences in treatment options [34].
This study indicates the importance of developing effective treatment plans with clear information and access to obesity treatments and support for chronic disease management to help patients better manage their disease. This has implications for health policy for ensuring more equitable care and patient engagement and the value of shared decision-making. Shared decision-making helps the patient and HCP decide the best course of action for the patient to improve their quality of life, and this may include several factors [6, 8]. The only way to identify what a patient want is to actively involve them in the initial discussions. Patients with obesity complications attend a variety of clinics but are often not attending an obesity clinic. The challenge for them, as they expressed it, was the lack of integration between each discipline. From their perspective, there was no coordination of services for patients with obesity complications. Good care was received from the designated clinics for an obesity-related complication, whereas obesity care was lacking.
When health policymakers decide on a policy, they engage with several stakeholders including the HCPs, patient groups, and other interested parties. In the case of obesity, they must direct the response to the epidemic to provide strategies for obesity control through community, health, workplace, and school interventions [35]. Obesity contributes to and, in some cases, causes other diseases such as diabetes, cancer, metabolic dysfunction-associated steatotic liver disease (MASLD), and kidney disease, which then involve a lot of health resources to manage them. Patients can become overwhelmed when dealing with multiple obesity-related complications such as diabetes. The challenge then becomes how health policymakers ‘empower’ the individuals and families if they do not know what the patient’s preferences would be, and how can policymakers identify preferences to allow empowerment in terms of interventions and treatment options. Gaining the perspectives of patients with obesity complications on treatment options enables us to represent their voices, enhancing patient-centred care. The concept of patient-centred care is a goal for most healthcare organisations. The development of public patient involvement (PPI) programmes and participatory action research has become an essential component to the development of quality health services. PPI is seen to inform health policy and ensure the system is patient-focused [36]. In addition, participatory action research (PAR) has several benefits from clinical, patient, and health policy perspectives as it can enable the development of new ideas and solutions. It can help inform changes in health management by optimising services for the benefit of patients and can provide equity by giving marginalised groups a voice and creating a greater level of access to policy development [36, 37].
Taking a rights-based approach to health policy advocates for more equity and more participation. True participation requires that all stakeholders, including non-state participants, are included in all areas of healthcare provision [38, 39]. As they are directly affected, patients with obesity complications are one of the key stakeholders to be considered in any health policy development. A rights-based approach is a framework that puts human rights at the forefront of any policy or process [40]. It is a mechanism designed to empower people to participate in decision-making. A rights-based approach to health policy advocates for more equity and more participation [38, 39]. The absence of knowing what choices for treatment options patients would prefer for obesity treatment can impede the development of effective treatment plans or indeed obesity health policy.
Key recommendations
The European Commission has formally classified obesity as a chronic disease, consequently, it should now be viewed and treated like all other chronic diseases. Taking patient preferences into consideration when identifying their management plan facilitates patient engagement, plays an essential role in their adherence to treatment, and should result in improved treatment outcomes. Providing a structure that allows informed decision-making between the patient and the healthcare professional may help establish the optimal approach for patients. This can be done through 1) Education of health professionals to increase knowledge and improve support of health professionals on obesity and treatment planning strategies. 2) Improve patients’ health literacy by developing programs and information systems for patients to improve their knowledge of obesity and its complications. 3) Expand access to affordable obesity treatment to ensure equity and access to disease services and support for all citizens. 4) Create the legal framework and guidance to expand research on health care and promote opportunities to promote fairness, independence, dignity, respect, and equity through developing and enhancing patient-centred care systems in shared decision-making for patients with obesity. Future research on patient preferences on a larger scale from the state bodies would be important to gain further information that could benefit future care and provide key information for those trying to provide care for patients with obesity. Important to note that clinicians working in specialists’ obesity services often have an acquisition bias for example if they predominantly provide pharmacotherapy as part of their care they think all patients want pharmacotherapy, the same applies to specialist dieticians who provide high-quality nutritional therapies because often patients have already decided whether they will attend a specific service based on what is provided.
Strengths and limitations
One key strength is that the findings are based on the lived experiences of the participants. In addition, building a rapport with the study participants allowed them to talk and have their opinions considered, small groups led to a relaxed environment that encouraged participation, as demonstrated by their quotes which contributed to the depth of the data. Several participants mentioned that partaking in the study has made them think about what they can do or change to make things better for themselves, which is consistent in other studies [41]. The participatory action research approach enabled participants to work in a group setting in a collaborative way to portray their voices. Developing the coding scheme and having two coders code the transcripts was a great strength especially because the second coder was a highly experienced qualitative researcher. Notwithstanding this, there were limitations including the small recruitment was particularly the case for the World Café method, because people must give a certain amount of time to participate, and some participants do not feel comfortable speaking in a group. While 50 participants were contacted, only 12 participants participated in the World Café; nevertheless, saturation was achieved which was determined as no new concepts or ideas emerged following the last discussion. Saturation was agreed upon with multiple researchers present at World Café.
An inherent limitation of all qualitative research is that the findings only pertain to those studied, albeit the emerging themes can be used in subsequent qualitative and quantitative research to better understand the research question. Another limitation is the views of HCPs are not known as these findings are the perspectives and views of the participants.
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