Core Set of Patient-Reported Outcome Measures for Measuring Quality of Life in Clinical Obesity Care

Participants

The S.Q.O.T. III meeting was attended by 27 participants: nine people living with obesity and 18 healthcare providers. The healthcare providers comprised six bariatric surgeons, two psychologists, three dietitians, two endocrinologists, three researchers, one plastic surgeon, and one physician specialized in obesity treatment. The participants represented twelve different countries from five continents. Seven participants participated online. Thirteen participants had participated in the S.Q.O.T. II meeting.

Selection of PROs and PROMs

First, during a group discussion, the participants decided unanimously that all PROs selected for the research set were also relevant in clinical practice and should be subjected to voting. We held one voting round for each PRO domain. This resulted in PROs for self-esteem, physical function, physical symptoms, mental/psychological function, social function, eating, body image, excess skin, and stigma. Second, participants voted to select the most suitable PROM for each PRO. The PROMs selected per PRO were the Impact of Weight on Quality of Life-Lite (IWQOL-Lite, self-esteem) [24, 25], the BODY-Q (physical function, physical symptoms, psychological function, social function, eating behavior, and body image) [26, 27], and the Quality of Life for Obesity Surgery (QOLOS, excess skin [28] questionnaires (Table 1). This set was identical to the core set selected for research (submitted). Below, we describe the selection process.

Table 1 Overview of the selection of the patient-reported outcomes and the patient-reported outcome measures for the core setSelf-esteem

Practically all participants voted to include the PRO for self-esteem (25 votes, 92%, healthcare providers 93.8%, participants living with obesity 87.5%). They selected the IWQOL-Lite self-esteem subscale as the most suitable PROM (23 votes, 56.5%, healthcare providers 50%, participants living with obesity 100%) [24, 25]. Some healthcare providers expressed concern about the costs associated with the IWQOL-Lite questionnaire [24, 25].

We should really consider the worthiness of incorporating a PROM with associated costs into the outcome set. The self-esteem IWQOL-Lite is very similar to the BODY-Q (psychological function subscale). Therefore, it may be recommended to consider removing the self-esteem IWQOL-Lite scale due to associated costs. (Quote from an endocrinologist).

There is some overlap between the IWQOL-Lite self-esteem and BODY-Q psychological function. However, self-esteem and psychological function are clearly different, and self-esteem is a very important concept to measure in obesity treatment. Both domains should be incorporated in the outcome set. (Quote from a psychologist).

Physical Function

Practically all participants voted to include the PRO for physical function (25 votes, 96%, healthcare providers 100%, participants living with obesity 85.7%). They selected the BODY-Q physical function subscale as the most suitable PROM (22 votes, 90.9%, healthcare providers 100%, participants living with obesity 80%) [26, 27].

Physical Symptoms

Practically all participants voted to include the PRO for physical symptoms (25 votes, 96%, healthcare providers 93.3%, participants living with obesity 100%). They selected the BODY-Q physical symptoms subscale as the most suitable PROM (23 votes, 100%) [26, 27].

Mental/Psychological Function

Well over three-quarters of the participants voted to include the PRO for psychological function (24 votes, 87.5%, healthcare providers 86.7%, participants living with obesity 85.7%). They selected the BODY-Q psychological function subscale as the most suitable PROM (22 votes, 95.5%, healthcare providers 92.3%, participants living with obesity 100%) [26, 27].

Social Function

Almost three-quarters of the participants voted to include the PRO for social function (22 votes, 72.7%, healthcare providers 69.2%, participants living with obesity 85.7%). They selected the BODY-Q social function subscale as the most suitable PROM (24 votes, 70.8%, healthcare providers 61.5%, participants living with obesity 100%) [26, 27].

I like the BODY-Q (social function subscale) questionnaire because it includes situations I encounter in daily life. (Quote from a participant living with obesity).

Eating

Almost all participants voted to include the PRO eating (24 votes, 95.8%, healthcare providers 100%, participants living with obesity 87.5%). They selected the BODY-Q (eating behavior subscale) as the most suitable PROM (22 votes, 86.4%, healthcare providers 92.9%, participants living with obesity 66.7%) [26, 27].

I think there are a couple of important aspects to measure for eating: hunger, satiety, and how long satiety lasts. From what I hear from people living with obesity, these aspects seem to be very important for quality of life. The BODY-Q (eating behavior subscale) comes closest to measuring these aspects. (Quote from a psychologist).

Body Image

Two-thirds of the participants voted to include the PRO body image (24 votes, 66.7%, healthcare providers 78.6%, participants living with obesity 50%). A considerable difference was observed in the preference of healthcare providers and participants living with obesity. Several participants living with obesity mentioned that they did not want the focus of body image to be on physical aesthetics. They suggested that a PROM assessing body image should focus on the individuals’ perceptions of their own bodies. Conversely, healthcare providers reported that the PROMs available for assessing body image should accurately capture the individuals’ feelings towards their own bodies. They emphasized that body image changes drastically after weight loss treatments, and therefore, it is an important measure.

In my experience as a dietitian, body image is a very important domain because weight loss interventions have such a big effect on body image. Patients tell me that the perspective of their body changes drastically after weight loss treatments. (Quote from a dietitian).

After a group discussion, re-voting on body image resulted in more votes in favor of including body image (25 votes, 80%, healthcare providers 92.3%, participants living with obesity 62.5%), and the BODY-Q (body image subscale) was selected as the most suitable PROM (23 votes, 78.3%, healthcare providers 69.2%, participants living with obesity 100%) [26, 27].

Excess Skin

More than three-quarters of the participants voted to include the PRO excess skin (23 votes, 78.3%, healthcare providers 76.9%, participants living with obesity 87.5%). They selected the QOLOS (excess skin subscale) as the most suitable PROM (25 votes, 68%; healthcare providers 64.3%, participants living with obesity 71.4%) [28].

We like the QOLOS questionnaire because it covers how excess skin makes you feel, how it stops you from doing sports, and the medical consequences of excess skin such as hygiene and pain. (Quote from a participant living with obesity).

Stigma

Approximately three-quarters of the participants voted to include the PRO stigma (24 votes, 70.8%, healthcare providers 64.3%, participants living with obesity 87.5%). No PROM was selected because none of the available PROMs were considered suitable. Reasons included the absence of questions on general experiences of stigma, the inability to use the questionnaires longitudinally, and the absence of validation evidence in people undergoing obesity treatment. Below, one healthcare provider highlights the importance of assessing both internalized weight stigma and the effect of experiences of weight stigma.

Internalized weight stigma refers to the stigma directed towards oneself. There is a correlation between internalized weight stigma and the impact or acceptance of weight stigma. It is important to not only assess internalization, but also the effect of weight stigma, such as its impact on healthcare engagement and mental or social health. (Quote from a researcher).

This healthcare provider is supported by a participant living with obesity who also highlighted the importance of capturing the impact of weight stigmatizing experiences.

None of the questions assess the impact of stigma, they only focus on the prevalence of stigma. No scale is considered suitable for use in obesity treatment. (Quote from a participant living with obesity).

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