Dietetics clinical outcomes

Clinical outcomes are measurable changes in health, function or quality of life that result from our care. Constant review of our clinical outcomes establishes standards against which to continuously improve all aspects of our practice.

The Dietetics service at Great Ormond Street Hospital (GOSH) works in partnership with all of the hospital’s specialist clinical services. The service works with children and young people and their families who have a condition where nutrition and special diets can be used as treatment. Many of these conditions result in:

• delayed growth
• poor oral intake
• feeding difficulties
• inability to swallow
• increased requirements for energy (calories) and nutrients

Our specialist assessment identifies the most appropriate dietary management, and we work with patients and families on how to carry out this at home. We also monitor children and young people’s growth and development ensuring the prescribed diet meets their needs. We work with GPs, health visitors, school nurses and local health workers who can provide support at home.

The Blood, Cells and Cancer Dietetics team works in close partnership with the clinical specialties haematology and oncology, bone marrow transplant (BMT), immunology, dermatology, rheumatology, and infectious diseases. Children and young people with conditions treated by these specialities have a higher risk of malnutrition (eg caused as an effect of cancer or the side effects of the treatment) and may have complex nutritional needs. The team assess the nutritional and dietary needs of patients and work to support their growth and long term health.

Here, we provide our outcomes from the perspective of parents and carers, and young people themselves (aged 8 and over). The NDPOQ is a validated self-reported questionnaire developed for use with patients and their carers to inform the quality of the nutrition and dietetic care they receive. The NDPOQ gives us information about how our dietetic service assists with health-related knowledge and empowerment, and the effects of our care on daily living. Below is a summary of results from across all specialties within the Blood, Cells and Cancer Dietetics team during 2020 and 2019. The NDPOQ-Young person questionnaire was available for children and young people aged 8 and over, and the NDPOQ-Parent version for all parents and carers with a child receiving specialist nutrition and dietetic care.

The Blood, Cells and Cancer Dietetics team at GOSH undertook an evaluation between October and December 2019 (see section 2. below) with a plan to repeat every 2 years or during periods of change to the department. Due to the outbreak of the COVID pandemic in the UK in March 2020, the dietetics team were moved off site and advised to work remotely. This meant a change to practice, where patients would previously have been seen face to face, all patient care was offered as telephone calls.

The NDPOQ tool was converted into an online survey to allow for children and their families to complete the survey from an electronic device either at home, or from the hospital setting.

Overall a total 37 of NDPOQ Adult and Young persons were completed in 2020. This was less than anticipated compared to number of patients reviewed. This could be due to a number of reasons including other priorities of families during the pandemic, as well as the change from paper/bedside screens to online surveys. Unfortunately, no patients from Butterfly ward completed the survey. This is likely due to the survey being only available in English and many families on this ward do not have English as their first language. Additionally, during the pandemic, access to interpreters on the wards was reduced. Also, disappointingly, there was limited feedback from the patients themselves. It is thought that as patient reviews were completed via telephone, parents and carers spent more time talking to dietitians than did the children so tended to complete the surveys themselves.

Due to only having two responses from children, the results below show only the responses from the parents and carers in 2020 (n=35) compared to responses in 2019 (n=68).

Figure 1.1 Blood, Cells and Cancer Dietetics service NDPOQ results, understanding

The results show in 2020, 80% (28/35) of parents and carers strongly agreed or agreed that the advice and support from the dietitian with remote dietetic input helped them get a better understanding of their condition. However, this decreased from 87% (59/68) in 2019.

Figure 1.2 Blood, Cells and Cancer Dietetics service NDPOQ results, lifestyle

In 2020, 86% (30/35) of parents and carers strongly agreed or agreed that the dietitian tailored the plan to their lifestyle, similar to responses in 2019 (87% 59/68). However, 26% (9/35) strongly agreed in 2020 compared to 49% (38/68) in 2020.

Figure 1.3 Blood, Cells and Cancer Dietetics service NDPOQ results 2019, weight

Most parents and carers 81% (28/35) said the dietitian helped them feel able to manage their child’s weight in 2020, which is similar to responses in 2019 (83%, 55/68).

Figure 1.4 Blood, Cells and Cancer Dietetics service NDPOQ results, general well-being

Although the majority of parents and carers felt the dietitian helped their child’s well-being improve 86% (30/35), this was a slight decrease from 2019 (89% 61/68). Whether this was impacted due to the pandemic, or whether the lack of face-to-face interaction between the dietitian and the child is unclear.

In summary, the results show a positive experience for parents and carers relating to the dietetic input for their child when provided remotely via telephone. However, to ensure an overall improvement in dietetic experience, remote provision needs further streamlining. Following this survey, dietitians covering inpatients returned to working at the hospital, following feedback and requests from the dietetic team, together with the wider multidisciplinary team. Outpatient reviews remained virtual via telephone clinic. A further survey will need to be undertaken to assess this change in practice to determine the plans for permanent changes to the service.

Below we show the results of 83 questionnaires that were completed during two phases in September and December 2019, 68 NDPOQ-Parent questionnaires and 15 NDPOQ-Young person questionnaires.

Figure 2.1 Blood, Cells and Cancer Dietetics service NDPOQ results 2019, understanding

Figure 2.2 Blood, Cells and Cancer Dietetics service NDPOQ results 2019, management

Figure 2.3 Blood, Cells and Cancer Dietetics service NDPOQ results 2019, weight 

Figure 2.4 Blood, Cells and Cancer Dietetics service NDPOQ results 2019, general well-being

The results in 2019 show that 87% (59/68) of parents and carers strongly agreed or agreed that the advice and support from the Blood, Cells and Cancer Dietetic team helped them get a better understanding of their child’s condition. The same proportion of young people, 87% (13/15), also strongly agreed or agreed that it helped them get a better understanding of their condition. 87% (59/68) of parents and carers report they felt the dietetic care was tailored to their lifestyle and 81% (55/68) felt the dietitian helped them manage their child’s weight. Overall, 90% (61/68) of parents and carers and 73% (11/15) of young people felt the dietitian helped their or their child’s well-being improve.

In summary, the results showed a positive experience relating to the dietetic input their child received and patient experience. Specifically, the results showed that adults/parents had a more positive experience in relation to the dietetic care provided to their children than young people directly.

This information was published in May 2021, and will be updated in two years.