DUNCAN RADLEY,1 KEVIN J DREW,2 CATHERINE HOMER,3 TAMARA BROWN,2 KARINA KINSELLA,2 CHIRAG BAKHAI,4 LOUISA ELLS2
1 Obesity Institute, School of Sport, Leeds Beckett University, Headingley Campus, Leeds
2 Obesity Institute, School of Health, Leeds Beckett University, City Campus, Leeds
3 Sport and Physical Activity Research Centre, Sheffield Hallam University, Olympic Legacy Park, Sheffield
4 Larkside Practice, Churchfield Medical Centre, Luton, Bedfordshire
Address for correspondence: Dr Duncan Radley Obesity Institute, School of Sport, Leeds Beckett University, 204 Cavendish Hall, Headingley, Leeds, LS6 3QW, UK.
E-mail: duncan.radley@leedsbeckett.ac.uk
https://orcid.org/0000-0003-3458-7201
Background: In 2020, NHS England commissioned independent commercial service providers to deliver a Low Calorie Diet Programme pilot, offering Total Diet Replacement alongside behavioural support.
Methods: This paper presents participant experiences of the programme using both quantitative and qualitative data derived from four cross-sectional surveys, and examines differences by sociodemographics, delivery model and provider.
Results: The majority of participants reported a positive experience with the referral process, with a small proportion feeling that insufficient information was provided and that they did not feel respected or listened to by their healthcare professional. Participants’ relationship with their coach was generally positive throughout each phase of the programme, and highlights the importance of coach-participant relationships. The relationship with the coach via digital delivery was less favourable compared to other delivery models, as was the perceived adequacy of support provided.
Conclusions: The experience of the referral from general practice and the relationship with the coach are key elements of the participant experience. They demonstrate the importance of, and need for, person-centred care.
Br J Diabetes 2024;24:ONLINE AHEAD OF PUBLICATION
https://doi.org/10.15277/bjd.2024.431
Key words: type 2 diabetes, obesity, Low Calorie Diet, Re:Mission study, survey
The 52-week NHS Low Calorie Diet (LCD) programme consists of 12 weeks of Total Diet Replacement (TDR), followed by 4-6 weeks of phased food reintroduction and ongoing weight maintenance support for the remaining duration; behaviour change support is delivered using one of three models (group, one-to-one and digital).1 The programme was available to adults aged 18-65 years, with a BMI >27kg/m2 (adjusted for ethnicity), and a diagnosis of type 2 diabetes (T2DM) within the previous six years (full eligibility criteria).1 In addition to the quantitative demonstration of clinical efficacy,2 a qualitative evaluation was commissioned to explore participant experiences, to inform service development and to provide recommendations relevant to healthcare professionals, service providers, local health economies and commissioners. An overview of the methods used in the qualitative evaluation is reported by Homer et al.3
Study design
This study used anonymous online surveys (Qualtrics, Provo, UT), distributed to participants at baseline, end of the TDR phase (12-week survey), end of the food reintroduction phase (18-week survey), and end of the weight maintenance phase (52-week survey). Participants were invited to take part by email (which included a link to the survey and freephone number to complete the survey over the telephone) via their service providers. Service providers were requested to distribute surveys, estimated to take between 20 to 30 minutes to complete, to all service users between September 2021 and April 2023. In cases where access to email was limited, paper copies of the invitation and survey were provided. Participants were requested to complete surveys at all time points. However, due to a low number of completed longitudinal responses the date presented are cross-sectional.
Surveys
Surveys were co-developed with the study Patient and Public Involvement and Engagement group,4 NHSE, Diabetes UK and service providers, then tested with 12 NHS LCD participants to ensure acceptability. The content of each survey was divided into two parts: (1) experiences of the programme, and (2) lifestyle, physical health and wellbeing (a copy of the surveys can be found in supplementary file 1). This paper reports findings from the first part of the surveys which explored: the referral process; initial contact and support from service providers; TDR products; perceived positives and negatives of each stage of the programme; and views on possible improvements. Section two of the survey is reported elsewhere.5
Analysis
To enable analyses of participant experiences by sociodemographics, delivery model and provider, survey responses were anonymously linked (via a unique referral ID) to data collected by NHS England as part of the services’ standard operating practices. Any variations noted based on sociodemographics, delivery model or provider are highlighted in the Findings section; otherwise, no differences were observed. For Likert scale questions, the frequency and distribution of survey responses were calculated using SPSS (version 28). For free text responses, thematic analysis was conducted by KD and DR,6 using NVivo software (Version 12) for storage and organisation.
Participants
At baseline 719 participants responded, which fell to 269 at 12 weeks, 167 at 18 weeks and 78 at 52 weeks (note, the number of respondents to individual questions varies because question responses were not mandatory). The sociodemographic characteristics of participants are presented in Table 1 and their distribution by delivery model in Table 2. Sociodemographic characteristics were available for 580 (81%) individuals at baseline, 220 (82%) at 12 weeks, 138 (83%) at 18 weeks and 69 (88%) at 52 weeks. Data linkage was not possible for the remaining participants due to erroneous unique referral IDs. Participant sociodemographics and programme characteristics were representative of the overall LCD programme, according to interim data presented to the advisory group in summer of 2023.
The referral process
Seven hundred and eight participants answered Likert scale response questions related to their contact with their referring healthcare professional (HCP) (Figure 1), the majority of whom (81% to 88%) indicated a positive experience (‘strongly agree’ or ‘agree’ responses). Approximately 10% of participants did not agree that their HCP answered all their questions, explained what would happen next in the referral process, or listened to their needs and treated them with respect. Free text responses when asked about possible referral process improvements included 33 participants stating that referral staff needed to better understand the programme and referral process, and to provide more information at the point of referral. Nineteen participants commented that it took a long time to start the programme after referral and 14 participants (nine from the group delivery model) reported a lack of communication during this time.
Initial contact and support from service providers
Six hundred and eighty four participants answered Likert scale response questions related to their early contact with their service provider. Overall, 90% ‘agreed’ or ‘strongly agreed’ that the people doing their initial assessment were helpful and supportive, and that the process gave them an understanding of what to expect on the programme. Consideration by provider indicated some differences in participant experience: positive (‘agreed’ or ‘strongly agreed’) responses were obtained by more than 92% of participants for four providers, 79% by one provider and 47% by another (although it should be noted that 49% of respondents reported ‘don’t know / not applicable’ for this last provider).
Free text responses when asked what to improve in their initial contact with service providers indicated that some participants (n=15) felt the provider needed to provide information earlier to help to manage their expectations, raise awareness of potential side effects, and provide a TDR product start date. Forty participants reported the need for better communication, including clearer and more streamlined information, and the need to be able to contact the provider more easily. The desire to receive a phone call, rather than just app messages or chat, was highlighted by 5 out of 25 participants from one of the digital providers.
Total diet replacement product
Two hundred and sixty four participants rated their TDR products: 63% rated them as ‘nice’ or ‘very nice’, 31% as ‘okay’ and 6% as ‘not very nice’ or ‘horrible’. There were some differences by provider: positive (‘nice’ or ‘very nice’) responses ranged from 57% to 87% and only two providers obtained positive responses from more than 65% of their service users. Of the 264 participants, 173 provided additional detail on TDR products improvements (see table 1 in supplementary file 2 for example free text quotes). A desire for more variety in products was most frequently noted (n=70), followed by the need to improve flavour/taste and texture (n=65), with all the different TDR products being referenced. Twenty nine participants felt the products were too sweet or wished that more savoury options were available, and
16 participants wanted more solid food options. Eighteen participants (15 of whom had a particular service provider) also highlighted challenges in obtaining the products advertised on suppliers’ websites.
TDR phase
Two hundred and sixty seven participants answered Likert scale response questions about their experiences during the TDR phase (Figure 2). The majority of participants (85% to 88%) indicated that the information provided by the programme was clear, the programme was easy to incorporate into their lives and that it helped them to achieve their goals. Furthermore, participants felt supported in the programme (84%) and had a good relationship with their coach (83%). There were consistently positive experiences for the majority of participants across providers and delivery models, with more than 70% of participants responding positively to all questions.
Of the 267 participants, 109 provided information on the positive aspects of TDR, which included: “weight loss” (n=88), “lower blood sugar” (n=48) and other health benefits n=34, including “reduced blood pressure”, “feeling fitter”, “increases in energy”, “more confidence” and “feeling healthier”. Some participants also highlighted the ease of TDR (n=16) and not feeling hungry (n=7). Two hundred and fifty two participants indicated they felt positive (e.g. “very pleased”, “really happy”, “over the moon”, “great”, “excellent”) about their weight change during this phase.
Perceived negatives of the TDR phase were provided by 43 participants and included: inhibiting going out socially (n=23), missing eating real food (n=9), hunger (n=10), the level of determination required to stick to the TDR products alone (n=6) and negative side effects (n=15). One hundred and thirteen participants provided additional detail about possible improvements, which included addressing the TDR product issues described above, with 59 participants focusing their responses on variety, supply, quality and delivery of TDR products. This theme was consistent across providers, with the exception of comments in relation to stock issues being predominantly related to one provider. Increased support was also highlighted as a need by 24 participants (from across a variety of socio-demographics, delivery models and providers), who wanted more support from their coach, and opportunities for peer support (see table 2 in supplementary file 2 for example free text quotes).
Food reintroduction phase
One hundred and fifty five participants answered Likert scale response questions related to the food reintroduction phase (Figure 3). The majority of participants (84% to 89%) indicated that the information provided by the programme was clear, the programme was easy to incorporate into their lives and that it helped them achieve their goals. Furthermore, they felt supported in the programme and had a good relationship with their coach. While there were generally consistently positive responses across providers and delivery models, there were two areas of difference: participants’ perceptions of the clarity of information from one provider, which only obtained 66% positive feedback, and the participant–coach relationship for the digital delivery model, which only obtained 67% positive feedback in comparison to 90% and 87% positive feedback for the 1-2-1 and group delivery models, respectively.
Of the 165 participants, 125 provided information on positive aspects of food reintroduction (see table 3 in supplementary file 2 for example free text quotes). Being able to eat ‘real’ food was most frequently noted (n=39), followed by consumption of / appreciation for healthy food (n=35) and feeling more in control / being more mindful of the food being consumed (n=34). Social eating (n=19), changes in weight (n=12) and the reduction in negative side effects (n=5) were also highlighted. There were no noticeable differences in participants’ positive experiences by sociodemographics, delivery model or provider.
Perceived negatives of this phase were provided by 60 participants and included: a need to plan, purchase and prepare food (n=23); increases in weight / anxiety about weight regain (n=19); concern about the level of motivation required to stick to the programme (n=9); anxiety over what food to eat (n=7); and the amount of support / guidance provided (n=6). When asked if they were confident about the types of food to reintroduce into their diet, 63 participants (43% of respondents) indicated ‘to some extent’ and eight participants (5% or respondents) indicated ‘no’. This varied by delivery model, with ‘to some extent’ being chosen by 60% of participants on the digital model, compared to 36% and 45% for those on the 1-2-1 and group models, respectively.
Participants were also asked how they felt about any weight change during the food reintroduction phase. In general, participants who continued to lose weight expressed positive emotions while those not doing so described mixed feelings.
Thirty nine participants provided additional detail on how they felt the food reintroduction phase could be improved. Fifteen would have liked additional meal planning resources, 13 needed more support from the service provider, and 13 suggested a slower transition from TDR products. When asked about the pace of food reintroduction, 29 (19% of respondents) indicated they felt it was ‘too fast’, 120 (76% of respondents) felt it was ‘about right’, and eight (5% of respondents) felt it was ‘too slow’; this finding was consistent across providers and by participant sociodemographics.
Weight maintenance phase
Seventy three participants answered Likert scale response questions related to the weight maintenance phase (Figure 4). The majority of participants (75% to 90%) felt that they had enough support to maintain lifestyle changes, the programme supported them to achieve their goals, and that they had a good relationship with their coach. There was variability by provider (there were sufficient responders for four providers) and delivery model in participants’ perception of the adequacy of support, with positive feedback from 60%, 63%, 84% and 87% of responders from each provider, and positive feedback from 67%, 80% and 82% for the digital, 1-2-1 and group models, respectively.
Twenty participants provided additional detail on how the maintenance phase could be improved: 15 stated they would have liked additional support / contact with their service provider, three would have liked more resources to support meal preparation, and two noted the need for more education.
Fifty seven participants provided information on how they felt about any weight change during the weight maintenance phase (see table 4 in supplementary file 2 for example free text quotes). Forty participants were happy with their weight change, 13 were disappointed and four indicated they were okay.
Seventy four participants answered the question about continued use of TDR products during the weight maintenance phase; of these, 23 (31%) indicated they had consumed further TDR products provided by their service provider (likely as part of a rescue package offered for weight regain), whilst 14 (19%) indicated they had purchased the products themselves.
This is the first paper to explore the experiences of a large, diverse sample of service users participating in the NHS LCD pilot programme in England. The journey begins with a HCP referral, which was regarded positively in most cases. This finding is supported by other components of the wider programme evaluation,7 which found that most HCPs found the referral process to be easy and straightforward, though some considered themselves to have insufficient expertise and knowledge.8-10 This variation may be explained by the different approaches taken in each area to mobilising the programme, including training, incentivisation and the management of referrals.11 Around 1 in 10 participants did not feel that the referring HCP had listened to their needs or treated them with respect. The detailed reasons for this are unclear and would benefit from further research: it is possible that, in some cases, this could relate to the expression of weight bias, which has been shown in previous studies and carries a risk of healthcare avoidance.12-15
The majority of participants felt supported on the programme, though a small proportion reported needing additional support from their coaches across its duration. Interviews with participants have previously highlighted a need among some for strengthened support outside the sessions and increased support frequency.16,17 Survey responses showed differences by delivery model, with participants on the digital model highlighting a desire to receive phone calls rather than in- App messages, and digital service providers receiving less favourable responses to questions about the adequacy of support provided and the participant coach relationship. This is important given the growth in digital weight management services.18
A desire for peer support was also reported by some participants, which aligned with findings from participant interviews at 12 weeks (end of the TDR phase).19 The importance of peer support was highlighted in a recent meta-analysis which demonstrated greater post-intervention weight loss and lower BMI in individuals who received peer support compared to usual care.20 Ufholz also demonstrated the positive participant perception of peer support, which may be particularly effective in supporting vulnerable at-risk populations and may improve long-term adherence.21
The food reintroduction phase of the programme was accompanied by several positive experiences related to returning to ‘normal’ eating patterns, including being able to eat ‘real’ food and eat socially again. Participant interviews also reported the enjoyment of eating out socially again, but highlighted potential challenges in finding healthy options in restaurants.16 However, some participants also reported feeling more equipped to follow a healthy diet, with an increased appreciation of healthy food, and feeling more in control of their consumption. Similarly, interview participants also spoke about a heightened appreciation of taste, although the feeling of control was not consistent, with some interview participants reporting anxiety about returning to unhealthy eating habits.16 This was evidenced by a notable proportion of survey participants who were not completely confident in the types of food they should be reintroducing, with the least confidence observed in participants taking part in the digital delivery model. Responses to the 52-week survey were smaller in number but do offer important insights into the continued use of TDR products. As part of the service specification, providers offer a ‘rescue’ package, permitted once during the weight maintenance phase, to provide participants with four additional weeks of TDR products, if they have gained more than 2kg. Findings from the survey indicated that 31% of participants took this rescue package, with an additional 19% consuming further TDR products not provided by their service provider. These findings are consistent with those from participants interviewed at the end of the food reintroduction and weight maintenance phase, when approximately one in three were either actively using TDR products or expressed an intention to continue doing so in order to manage their weight and offset unhealthy dietary choices.16,17
Strengths and limitations
This study is the first to examine the experiences of a significant number of service users who participated in the NHS LCD programme. The study's strengths include its representativeness of the delivery models and socio- demographics of the main programme, as well as the large number of participants at baseline. The study encountered several limitations that need to be acknowledged. First, there was a poor longitudinal update. Additionally, the lack of information on the proportion of programme participants invited to provide feedback meant it was not possible to calculate uptake rates for the surveys. Other limitations stemmed from the reliance on service providers to distribute the survey (although they had a contractual obligation to support the evaluation) and reliance on participants to report ID numbers accurately – hindering data linkage for participant socio-demographics. Further, the study may have been subject to selection bias, whereby those with negative views or those who had withdrawn from the programme were less likely to participate in the survey. Lastly, it should be recognised that participants may have found the surveys burdensome and repetitive, possibly contributing to the reduction in responses at each stage.
Recommendations for policy and practice
Recommendations for future research
This survey offers insights into the participant experience of the NHS LCD programme and gives recommendations for improvement to the service for commissioners, providers and referrers, many of which have already informed the development of the NHS programme.22
© 2024. This work is openly licensed via CC BY 4.0.
This license enables reusers to distribute, remix, adapt, and build upon the material in any medium or format, so long as attribution is given to the creator. The license allows for commercial use. CC BY includes the following elements: BY – credit must be given to the creator.
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Conflict of interest The authors declared the following potential conflicts of interest with respect to the research, authorship and/or publication of this article: LE has received funding from NIHR, MRC, Leeds City Council and OHID/PHE in the last three years and has had an honorary contract with OHID. CB is a primary care adviser to the national diabetes programme for NHS England.
Funding This work was supported by the National Institute for Health Research, Health Services and Delivery Research [NIHR 132075]. The NHS LCD programme is funded by NHS England. For the purpose of open access, the author has applied a Creative Commons Attribution (CC BY) licence to any author accepted manuscript version arising. The views expressed in this publication are those of the author(s) and not necessarily those of the MRC, NIHR or the Department of Health and Social Care.
Acknowledgements The authors would like to acknowledge the Patient and Public Involvement team that have worked on the coproduction of the Re:Mission study, including Ken Clare, Abimbola Ojo, Jennifer Teke, Mike Willis, Gulsoom Akhtar, Beth Clegg and Clair Goddard.
Members of the steering and oversight groups are also acknowledged by the authors for their input and involvement in the Re:Mission study, including the clinical lead Dr Mark Ashton.
The Re:Mission study includes a multidisciplinary team of academics from across the North of England. The authors would like to acknowledge all members of the team including Dr Jamie Matu, Prof Jim McKenna, Dr Maria Maynard, Pat Watson, Dr Susan Jones, Dr Simon Rowlands, Dr Tanefa Apekay, Dr Stuart Flint, Prof Janet Cade, Dr Adam Martin, Dr Maria Bryant, Dr Jordan Marwood, Dr Wendy Burton, Mick Martson, Pooja Dhir and Tamla Evans.
Ethical approval Ethical approval was received from the Health Research Authority (REF 21/WM/0126) and Leeds Beckett University (REF 107887 and 79441). Participants provided informed consent to participate in the Re:Mission study, including consent for publication. All participant data were anonymised and where photos have been used in publications or presentations, permission was sought from each participant.